No Stereotypes Here - Neurodiversity activist blog

Ableism at the Children's Hospital

2012-01-14T14:07:00.001-05:00

What a way to start the new year, I came across this on tumblr, and feel the need to share this as an example of ableism that exists in the world.

As seen in this post by Amelia's parents, doctors at the Nephrology department at Children’s Hospital of Philadelphia are refusing to proceed in a kidney transplant because Amelia has Wolf-Hirschhorn Syndrome, an intellectual and developmental disability.

I don't think I have the words to express the outrage I feel regarding this. This should not be allowed to continue. I'm planning to try and follow the events regarding this, and give as much support as I can. Hopefully Amelia will be able to get the transplant, and doctors will get the message that treating disabled people like this in not appropriate.

Edit: There is now a petition to sign to allow Amelia to have a life-saving transplant. Please sign!!

Musings on the ASAN Celebration

2011-12-07T09:54:00.000-05:00

I know I'm a bit late posting this, but I was processing my thoughts, as well as juggling many things. This morning is pretty much the first chance I've had to sit down and write it all out.

I remember when I first came online into the greater Autism communities, ASAN was one of the first groups I encountered.   It's been a bit of a shock to realize that it's only been in existance for 5 years, when it feels like it has been around for so much longer. Five years is both a long time and a short time for non-profit organizations, and is one that is significant because it not only is a matter of surviving, but it shows that there is a need for ASAN to exist and to continue existing. The day in which we no longer need the ASAN will be bittersweet, since it will mean the end to ASAN, but it also means that ASAN and other disability rights groups has succeeded, and both Autistic people and disabled people are equally included in all matters concerning us.

Today, however, is not that day. On Wednesday, November 16th, I celebrated ASAN's 5-Year Anniversary, in Washington D.C.

I have to admit, I am honoured that I was invited to attend the event. I've always looked to ASAN for inspiration on the type of impact I'd like to make. However, for me to do the work that ASAN does is a bit daunting. Thinking that I don't have the expertise or knowledge to work on a governmental level (at least yet), I've decided a long time ago to do what I can, to work on a more individualized and community level, doing talks with my local organizations, talking with other Autistics, our parents and support workers, and blogging.

It is this decision that has led to this blog, as well as to my other contributions around the internet. This decision also led me to Autistics Speaking Day. Over the few years, I made contacts with other Autistic individuals and allies who shared the same views. I have never claimed to speak for everyone on the Autism spectrum, declaring that "I speak for me!", and yet I found myself surrounded by people who said "I agree with what you said."   And at the same time, I encountered people who said "I hadn't thought it that in that way; you have changed my mind. Thank you."

I felt encouraged. Even though it might have been just a little difference for someone else, I feel like what I do has worth and that I am capable of making a difference. I felt empowered, that maybe all these little differences will add up and I'll be capable of reaching a lot of people one day and making a big difference. And so I continued. I read things, I responded and wrote things.

And then I came across Communication Shutdown. Because of the previous decision I had made, and the empowerment I had gained from that decision, it was an easy decision for me to come up with Autistics Speaking Day. I didn't even think about it, really, I just thought something needed to be done, grabbed a name at the top of my head, and put it on my blog.

I don't think I ever imagined the kind of effect that Autistics Speaking Day would have. I've kinda gotten used to working on a small-scale that the concept of Autistics and allies from all over the world would participate still stuns me. It was an accident, a very happy accident, from what I gather as I read all the wonderful things written about Autistics Speaking Day.

When I got the email from Kathryn about going to Washington for the award, at first I wasn't sure whether I could or whether I should. While I had dedicated my time to Autistics Speaking Day, and I acknowledge that it was my idea that started everything, I've been a little uneasy about taking much credit for it. Maybe it's lingering self-esteem issues, or my upbringing to be as modest as possible, but I don't really consider Autistics Speaking Day as mine. To me, it belongs to every person who contributed blogs, read posts, tweeted about and did anything to do with Autistics Speaking Day. To me, it belongs to the community, so it felt a bit wrong of me to take a substantial amount of credit for it. It felt like a mixture of egotism and a bit like super-crip-ism.

But then it dawned on me on where the award was coming from; this is the ASAN, an orgranization created by Autistics, run by Autistics, for Autistics and cross disability issues. These were people that I had been talking to, blogging with, signing petitions and protesting with since 2009. These are my people, saying that what Kathryn and I did, what I imagined and put forward to the community, has worth and made a significant impact to our community. It's that acknowledgement that means a lot to me.

So I went to Washington, all nervous and excited. I heard Ari speak live for the first time, passionately and powerfully about the need for Autistic people to be involved with matters that concern us. I felt myself inspired, recalling the motivation and determination that has kept me blogging these past amost-three years. I accepted the award, and thankfully didn't stumble over my little acceptance speech too much.

But you know what the best part of it all was? It was meeting my people, Kathryn, Savannah, Ari, Melody, Lydia, Stimey, Lori and Karen and all the others who are my community.   It was the best time ever.

Functioning labels and meaning

2011-12-06T11:19:00.001-05:00

This is going to be a short post; I've written a more extensive article for the Autism Women's Network on this that I need to just finish editing before it goes up.

Most to the time when I come across the terms high-functioning and low-functioning, they are used as descriptors for Autistic people, whether well-meaning or as a way to dismiss Autistic opinion. However, at the time of writing this, the last time I had it directed towards myself directly was in a conversation just a few days ago at a store I go to on a weekly basis. For context, the staff at this store know I am Autistic, ADHD and some of my various other disabilities. They also know that quite a few other regulars also are on the spectrum and have disabilities.

I was talking with one staff member and the topic of disability came up, Autism amongst my family members in particular, and how some of them aren't diagnosed even though we're pretty sure they're on the spectrum, with some comparison to my own rather belated need for a diagnosis. In response, the staff member replied "well, you're pretty high-functioning yourself, right?"

Knowing that she didn't know how quite loaded that term is for me, and she didn't mean to step into the "but you don't look disabled" fallacy, I attempted to explain it's not a constant state (I don't know about how well I came across; i had a migraine and had just worked a 7-hour retail shift, was hanging on with the last of my batteries and my last remaining spoons). As I did so, I came to understand something, what people really mean by high- and low-functioning.

It's not about vocal skills or IQ scores, as I've seen proposed in the Autism communities, or frequency of symptoms and self-harming behaviour, as defined by the Global Assessment of Functionality. It's about visibility.

Think about it; that's what really is meant when people label functioning status to disabled people, the level in which the disability is visible to other non-disabled people. A person like myself, whose disabilities are largely invisible due to the nature of my disabilities themselves and the work I put into surviving outside my safe space, is more likely to be automatically considered "high-functioning". This is because unless I let people in and show others my private life, my daily struggles, the moments where I'm not working on "passing", people have no idea how much that label is inconsistent with my actual reality and a lot of times, a lie. In the paraphrased words of a few of my friends "it wasn't until I lived with you that I fully understood the impact and implications of what you told me what your life is like; until then, I thought I knew, but I didn't."

Autism is already an invisible disability, being that by clinical definition, it is a developmental disorder, a mental disability, not a physical disability. This means that unless we are very visibly Autistic, most people have no idea that we're disabled. Someone who is highly visible as being Autistic is more likely to be considered "low-functioning", and treated with all the stigma that entails, due to sheer ignorance. There is, of course, problems with both scenarios, based on assumptions made about disabilities in general and functioning labels on specific.

As part of the Autism and Disability rights movements, I think we should be correcting the terms. Let's call out the fallacies in functioning labeling, and call it what those descriptors really mean, highly-visible and highly-invisible disabilities. This way, not only are we rejecting the assumptions made about us, but we're also confronting ableist attitudes hidden in the words used to describe us. It makes clear that what they're using to divide and label us is false and superficial and makes it uncomfortably clear on what they really mean. Maybe then we can change more minds on how they treat us.

Edit: Of course, there are problems with the terms highly-visible and highly-invisible, in that there are also times when someone is more visibly disabled than others. This certainly isn't going to be the ending solution to the problems with high-/low-functioning labels. However, I think it's a step towards confronting non-disabled people on what exactly they mean by those labels and the underlying attitudes that are expressed. It's a step towards addressing the ableism behind it, so that we can work on descriptors that are more accurate and are still respectful of every disabled and Autistic person.

Self-Advocates Sonnet

2011-11-10T20:35:00.001-05:00

This is one of the poems that I submitted to the Perspectives Anthology 2

Self-Advocates Sonnet

Shall I consider how my day is spent

in this land, far and great and wide

where I seek what others try to hide

examining where rules and ethics bent

twisted, reworded my nature present

while armed with truth, I speak tochide

too often, my voice cut off, silenced,denied

shouted down by demands for birthsmine-kin prevent

whilst ignoring human rights, thebasics we need

another sigh of patience, I maintain todo my best

to advocate, create changes to thecurrent state

of services, supports, implement at tooslow speed

I tire, but have far to go before Idare to rest

For the sake of life, we cannot affordto wait

My ASDay

2011-11-02T23:42:00.003-04:00

I never did get to finishing and posting the two posts I had planned for Autistics Speaking Day. I was going to explore the link between poverty and disability, as well as take a look at how crisis lines are ableist (aka, why aren't there online crisis chat services, why aren't there mental health services that disabled people who find leaving their homes or picking up a phone to be a challenge?).

But it never happened. There was just a flood of posts coming in that between taking care of them (I read pretty much every single one) and doing my own daily tasks, I didn't have time to write my own!

Luckily, I had a plan in case this happened, and took photographs throughout the day. The ones I posted on Twitpic can be clicked on to see the full photo.

So, I bring you, My ASDay:

First, I started the day at the Sleep Clinic. I have severe sleep apnea and had stayed the night in order to get my CPAP pressure checked. Turns out, my pressure needed to be raised.

my room at the sleep clinic

I woke up at 6am, and made my way home from the Clinic. My monthly bus pass had expired (new month), so I made a mental note to get it renewed. I'm on a Municipal Fee Assistance program, so I get a discount on monthly bus passes. I pay 46$ a month, instead of $60-something (the prices just went up, I used to pay $44).

I got home and noticed that I need to replace my bandaid. I had cut my finger at work. Here is a photo of it (which I'm not displaying here, for trigger warnings)

I also made sure to take my morning medications. I have two main meds that I take, one in the morning and one in the evening. The rest of my medications are as-needed meds, for things like acid reflux or when I need an extra boost to beat anxiety.

my morning meds

I sat down and started working on getting updating the ASDay blog. So many posts!!

ASDay Headquarters no.1!

At one point, I noticed a bit of a crash in the hall. A bit later, I went to investigate. The maintenance guy had been around, trying to fix the small window in our front door that had broke. He's been working on it for some time, and I think that it might be cheaper if the non-profit housing organization just replaced the door. It's an old door, original to the house, and it has quite a few cracks and leaks.

our front door and the glass for our front door

After that I spent some time chatting to my boyfriend, Dave, on Skype while I worked on putting up submissions.

Chatting with Dave aka Noyer on Skype

Then my house-mate B asked whether I'd like to go grocery shopping with him. His case worker came to pick us up and took us to the grocery store. I got some new hair clips, because I am forever trying to find clips that won't fall out of my hair and I just got my hair cut. I also picked up some of the Halloween makeup glitter on sale, and a few treats. I mostly got things I needed, including things for my lunches to go to work.

my groceries, about $60, a tad over budget but I figure I can afford it with a new job!
(stuff on the bottom rack are B's)

Since we were near one of the pharmacies that sells bus passes, I ran inside to renew my monthly pass!! B ran to the pet store for kitten food (for his kitten) and to the bank (to get cash to pay his share of the internet bill). We came home and put our groceries away.

Between semi-obsessional food hoarding and donations from friends, I'm stocked for winter!

I put away my non-grocery items as well, and opened up the hair clips to wear for the day.

Had bigger ones as a kid, I used to pretend they were alien monsters

I got back to work on updating posts, but also got a little distracted by housework. I did a little tidying around my room, swept/swiftered my floor and took out my recycling and garbage. Garbage days are Sunday nights, so I usually take the recycling and garbage from my room after Sunday, about every other week. Garbage/recycling is one of the chores around the house. My chore is to vacuum the carpets, which I try to do at least every other week. Right now, the upstairs carpets are fairly good, but since the kitten's litter box is downstairs, I think I need to do it soon.

Sweeping and taking out recycling

Then, I worked on ASDay posts again, and starting fixing my supper in the slow cooker. I made chicken with a pesto-cream cheese sauce, which I had with vegetable juice and rice. I usually put on these seasonings on my rice, and I'm pretty much out. Next time I'm near the Asian Market, I need to pick up some more. As I started up the ASDay IRC chatroom with the GimpGirl Community I made Apple Crisp for my Dungeons and Dragons group, who came over to play.

Remainder of DnD Apple Crisp

Before I played a quick session of DnD, I did a bit of work on my schoolwork, handing in an assignment due that day, and working on discussion questions. I also have an essay due next week.

Coursework, really!

Unfortunately, I couldn't get a photograph of my DnD group, but we had some fun. Afterwards, people left for home (one slept on the couch though, she was too tired to head home) and I got back to work on ASDay posts. Kathryn and I divided up the rest of the work, based on our strengths, and I managed to get completely caught up with the submission form list!

Caught up with posts! Yay!

By that time, it was kinda late for me, who had gotten up at 6am and had work the next day, plus school to work on. Kathryn had Wednesdays off, so it was mutually agreed upon that she continue on while I went to bed. So I did.

my bed! Bedtime!

Ta-Da! That was my day!

ASAN 5-Year Anniversary Celebration

2011-10-28T00:27:00.001-04:00

So I guess I should post the news. Kathryn and I have been invited to the ASAN 5-year Anniversary Celebration, at the National Press Club in Washington D.C., to receive the 1st Annual Award for Exceptional Service. We're being recognized for our work creating Autistics Speaking Day.

Um. Apparently, this is a big deal. I wasn't sure whether I'd be able to go, but my parents and I are going to drive nine hours to attend. So I'll be there.

I'm kinda embarrassed. I don't do all the work I've done for awards, although it is nice for both of us to be recognized for what we've done.

But I get to meet quite a lot of the people I've been emailing and chatting with online for the past... two years, at least? I'm really excited for that.

So if you're going to the celebration, I hope to see you there!!

Occupy Toronto: Disability Pride March

2011-10-25T22:26:00.001-04:00

(This was passed my way by the Disability Studies program at Ryerson. As much as I would love to attend, I am unable to do so, and so I spread the word. ~Corina)

Toronto Disability Pride March

Saturday, October 29 · 12:00pm - 3:00pm

Nathan Philips Square to Occupy Toronto (St. James park)

Please forward and share far and wide!!!

PLEASE SHARE/INVITE OTHERS!!!
Join us at the square, and come down to Occupy Toronto if you can! They're making great efforts to be accessible down there.

Why Disability Pride?
Because Rob Ford, or somebody under him, cancelled International Day of Persons with Disabilities Celebrations ...
Because when cuts happen, people with disabilities are often the first to be hit, wheeltrans was almost on the chopping block, and social housing still is.

Because there have been way too many deaths and injuries to people with disabilities in interaction with Toronto Police, and considering the amount of funding they get, there should me some disability training. No one should be dying in police interactions in Toronto! http://www.youtube.com/watch?v=yhhkOMTgq30

It's time we showed Toronto that Torontonians with Disabilities have a voice, and we will not be sold out or discriminated against!

Facebook link: http://www.facebook.com/#!/event.php?eid=150322745067099&notif_t=event_update

Isaac Stein, M.Ed

Disability Counsellor

Accessibility Services

St. George Campus

University of Toronto

Loathing Words by Dave Hingsburger

2011-10-04T11:18:00.000-04:00

Dave Hingsburger is one of my favourite disability bloggers. I find that he just has this way this words that says exactly what needs to be said. This is one of his most recent posts, Loathing Words, which I asked permission for to be reblogged.

Loathing Words!!

Words.

Piles and piles of words.

So many of the things I've been reading recently, about disability, have infuriated me. There are words that appear over and over again. Words that appear benign. Words that appear to be about something BIG, about something GRAND, about something IMPORTANT. Words that assume what I want, as a person with a disability, what we want as people with disabilities. Words crafted by others, that pretend to be about us, about our needs, but are only, really, about the sense they get about being gifted in the presence of what they see to be our deficits. Its is only really a fool that could say, "There but for the grace of God go I," and not understand what it says and what it means. There are words that feel good in the mouth of the privileged but burn in the ears of the dispossessed.

Words like: Empower.

I hate this word. I see it all the time. I've written about it before and I will do again, but for now let me rant. Who the hell wants, ever, to be empowered by another? Who the hell wants to be seen as so weak and so passive that they wait for the benevolent help of one's 'betters' for the 'gift' of power? We can only, of course, empower ourselves. We can only, of course, embrace the power we've always had and begin to use it. We can only, of course, raise ourselves. No one can do these things for us. No one can do these things for another. The word 'empower' - where it bothers me most, is when I see it used by those within systems. Systems that have routinely disempowered, routinely disengaged, routinely disregarded those with disabilities. Those they SAY they SERVE. It's a word used without irony, which is, itself, ironic. They first rob of power and then give tiny pieces of it back and call it 'empowerment'. It's like a thief stealing from someone a dollar and then giving a quarter back in an effort to 're-enrich' the victim. Right.

Empower.

I call Bullshit.

Words like: Tolerance

I do not wish to be tolerated. I do not wish to be the 'one' tolerated by the 'many'. I do not wish anyone making the supreme effort to tolerate the mere fact of my presence. I do not wish to be the fart in the elevator that everyone pretends is not there. Existing with the understanding and tolerance of another, existing with the gift of someone's making an exception, someone's making an effort ... as if my existence here, in this place, is not a right but a privilege granted by another. Those who tolerate get to tut tut the tolerated. Those who tolerate get to roll their eyes and glance conspiratorially at the other tolerators at the antics of the tolerated. Those who tolerate get to determine what is acceptable and what is 'just to much my dear'.

Tolerance.

I call Bullshit.

Words like: Kindness

Let me dissuade you of an idea. I do not want your kindness because I do not wish your pity. And let's be honest, kindness most often grows as a weed around the wellspring of pity. Grabbing a door for a pregnant woman who is struggling with parcels to get in is not KINDNESS, for God's sake, it's CIVILITY. We have become a society who wants kindness credited to their humanity card for simple acts of civility. While I do not wish kindness, certainly not more or less kindness than offered to any other, I do wish for civility. I do wish for behaviour that considers me as a person and my needs in the moment. Just as I wish to consider the needs of you as a person and your needs in the moment. Civility is not kindness. Civility is increasingly rare but that does not make it's occurrence exceptional or it's practitioner kind.

Kindness.

I call Bullshit.

Words like: Blindness

Saying to someone with a disability that 'I just can't see disability' or 'when I see you I don't see your disability' or 'I only see abilities', and this is the worst of course, 'I'm just blind to disability.' Oh, freaking, please. PLEASE. No one is 'blind' to my disability and furthermore I DON'T WANT YOU TO BE BECAUSE I'M NOT ASHAMED OF IT. I don't see how you think I should be flattered or, God Forbid, think you are magnificent, because you don't see what is plainly there. I am disabled. Get that. I am freaking disabled. I am in a freaking, fracking, wheelchair. See it? It's the thing under my fat ass!! Don't try to get me to 'play pretend' that my disability doesn't exist to you or to the world. Don't get me to give in to your desire to play 'dress up reality' and feel that you have RAISED ME OUT OF DISABILITY AND INTO EQUALITY. No, don't. Just don't. I am disabled. I don't like the idea of being verbally euthanized by words like 'challenged' or 'special' or 'exceptional'. I don't like being taken out of language and I don't like being taken out of my wheelchair and into fantasy-land. I live here, in reality, and I FREAKING LIKE IT HERE. I do not wish to move into your world where you pretend I don't have a disability and I pretend that you are a saint.

'Blindness.'

I call, double Bullshit.

Hey, here's a word I'd like to hear a little more often: Respect.

Why don't we try that for a little while? Why don't we empower ourselves though kindness and tolerance towards a disability blindness so that we can ... oh, sorry the word respect doesn't fit in that sentence. Respect Difference. Respect Diversity. Respect Disability. Respect engenders respect. None of the other words have that capacity. None of the other words have within it a deep need for mutual change. None of the other words call us out into real interaction and real comradeship in the real world. Respect knocks at the door of social change. I'm guessing that's why kindness, and tolerance, and 'blindness' and empowerment never answer.

Words.

I love some.

I fear others.

I loathe these.

Why "Retard" is a Hate Crime

2011-09-20T14:23:00.001-04:00

It doesn't happen often, but every once in a while I get confronted with a very ugly word.

"Retard"

It's used a slang, as an insult. People know that it's offensive, but they still use it. They seem to think "oh, it's slang, it's just a word, it doesn't matter." But you see, it does matter. Just because there isn't a person with intellectual disabilities there, or apparent, doesn't mean it doesn't matter. Because connotations matter. The thought behind the word, it matters.

Let me show you how.

The noun "retard" comes from "mental retardation". Despite some popular belief, it is actually still used as a diagnosis for people with a low IQ score and two or more adaptive behaviours. According to the ICD-10 and the DSM-IV-TR, there are even varying degrees of it. It is considered to be an intellectual disability, and in fact, most advocates prefer the term intellectual disability rather than "mental retardation".

Why? Because of how the term "retard" is used. It is used not just towards people with intellectual disabilities, it is also used against any disabled person. It gets flung at children in the schoolyard. It gets tossed around as an insult by adults. It has been used to mock, ridicule and insult, not only non-disabled individuals, but disabled people specifically by the simple act of using a diagnosis as slang.

When you use the term "retard", you are specifically taking defining aspects of people, in this case disability, and mocking them. It's kind of like taking a person's skin colour or sexual orientation and using that as an insult. We don't use the words "nigger" or "faggot" anymore? We know better, or at least, we should know better, because there is a history of discrimination against the groups that it refers. In our supposedly more progressive society, it is no longer acceptable to use those words.

The same is with "retard", but it seems like the same regard is not applied to disabled people. It's discrimination. It says that you can target disabled people, mock and insult them, and get away with it because you can.

When you can hurt them in your head and with your words, what's to stop you from hurting them psychically? Because believe me, you're already hurting people mentally and emotionally with your words, and it doesn't take much for those types of attitudes to shift from being merely words to physical violence.

It already happens.

Right now.

Go on, look up "disabled victim", "disabled crime", "disabled violence", or "disabled murder". It is said that disabled people have at least two to five, possibly up to ten times, the risk of violence than non-disabled (Sobsey 35).

Disabled people have been beaten, robbed, sexually and physically assaulted, and murdered because of how people think of them. Because people think it's okay to use us as an insult, to mock us and degrade us, then it's okay to take things one step further and target us specifically for crimes, not just the individual, but the entire group.

Do you know what it's called when an offence is motivated by a person's membership with a group?

Hate crime

The question is, do you really mean it? Do you really want to potentially endanger people with the carelessness of your words?

Understand that ignorance as an excuse only goes so far, and intent does not mean that you are exempt from the consequences. Once you know about the potential results, you got to ask yourself how you would feel if someone mocked you for being right- or left-handed. Or being beaten because of your ethnic background? Or murdered for speaking another language? And then the people did that to you just walks away without facing any consequences, legal or otherwise?

Don't like it?

Yeah, neither do we.

Works Cited

Sobsey,Dick. Violenceand Abuse in the Lives of People with Disabilities: the End of Silent Acceptance?. Baltimore: P.H. Brooks Pub. Co., 1994. Print.

The Beginnings of Autistics Speaking Day

2011-09-09T11:30:00.002-04:00

Hi all!! I wanted to let you know that I wrote a post on the beginnings of Autistics Speaking Day for the Thinking Person's Guide to Autism, and it just went up today.

So go ahead and check it out!

~Corina

Self Definitions of Recovery

2011-09-03T11:14:00.000-04:00

Recently, I took a class called "Mad People's History" at Ryerson University. It's a course that explores the narratives of psychiatric survivors, on their stories of their experiences in institutions and outside institutions. Some of the stories we looked at were those of the leaders in the Survivor movement from the 1970s to today, and how they affect how mental health services are operated now.

As part of our assignments, we had to go out and explore our local "mad" community, keeping a diary as we went to record our observations. One of the things that I noticed was how mental health organizations used the term "recovery".

Instead of enforcing an externally conceived notion of recovery, it is the clients themselves who defines their goals and terms for recovery. This returns power to the patient and gives them control over the services and supports involved with their lives. This also rejects the notion that recovery is the same for every person.

What I think is that the concept of recovery is different when applied to different diagnosis. Just like there are different causes to disabilities and disorders, there are different reactions and progression after the onset of disability. This applies to all kinds of disorder, disabilities and what is considered to be mental illness.

In some cases, the term recovery is apt; it describes the process of regaining, restoring and healing from injury, trauma and disease. These are the times when the disability is temporary and possibly easy to repair without long term effect. Such cases may be rare, since even as temporary, the experience can have a lasting effect on a person mentally.

Most of the time, recovery and healing can only be partial, compared to skills and abilities before the disabling event. These can range from barely noticeable differences to huge developments for a person, and can be the result of a large variety of rehabilitation therapies. The focus with the use of recovery in this setting is to give the person choice in what therapies to pursue and whether or not they want to undergo treatment, under the person's definition of recovery.

However, there are also permanent disabilities that the term recovery is completely inappropriate. These are the cases where disability happens early on, either through genetics or other forms of causations, and affects development of skills from the get-go. I'm including Autism, ADHD, and Learning Disabilities, whereas skills and abilities have not been taken away, but rather develops to a different outcome at an individual rate. In such cases, there is nothing to recover, since those skills and abilities might never have been there in the first place.

It is not a matter of recovery, and so using the term recovery is completely inappropriate. A more appropriate term is development. A diagnosed child with these disabilities is going to develop skills at their own rate, but there is also more conscious involvement of parents, teachers, caregivers and professionals in observing and encouraging the development progress. At the same time, it is difficult to give an accurate prognosis of a child, since there is little to compare a child to other than other children, which is not an appropriate gauge. Since each child develops at their own rate, it is more accurate to compare a child's progress by the skills that have been developed so far, and try to use that as, at best, an educated guess at the rate the child will develop.

In any case, since a person with developmental and early-occuring disabilities will be following a more unique and individualized development growth. As a person progresses, they will be building completely new skills, instead of regaining old skills. Unlike situations where a disabled person may be actively compensate for impairments, the term recovery is completely inappropriate. While the use of recovery may empower individuals, it can also de-power individuals.

To use the term recovery in such case is to perputrate the myth that there is or was a "normal" individual that can fixed or cured to the state where a person is no longer disabled. This is a very medical model of disability, which places the burden of impairment and disability on the individual in a manner that is very victim-blaming. In fact, in the medical model of disability, a disabled person is more or less a victim, whether by accident, the actions of other individuals, or the genes one inherited from parents. It is then the responsibility of the individual to take up the burden of disability, and make oneself as less-disabled as possible. This leads back to the idea of cure and recovery.

If a person is the one defining recovery and is making decisions on how to achieve recovery for skillls and abilities that are capable of reclaiming and compensating, then the use of recovery is appropriate. But for in the case where a person is progressing with new skills and abilities, then the term recovery is not apppropriate and should be replaced with more suitable terms such as development and growth. This way a person is empowered by their own accomplishments instead of being improperly compared to unrelated others and potentially being disabled through the medical model.

Response to Review of Social Assistance

2011-08-29T19:39:00.004-04:00

In Ontario, the Social Assistance programs are under review. The Commission involved is in charge of "examining social assistance in Ontario through engagement, research and analysis to provide the government with a concrete action plan to improve the system for the people who need it."

There are comment and response forms for people to reply and contribute, found on the Commission for the Review of Social Assistance in Ontario website.

Being a recipient of ODSP, I contributed my own comments, as seen below:

When determining social assistance rates, the cost of living needs to be considered. Depending on location and the fluctuation of the economy, the cost of living changes. In such cases such as the present, when the cost of living rises, so should the rates in order to ensure that recipients are able to afford necessary items such as food, clothing, rent (which for any higher quality of life is much higher than the amount given for rent with ODSP), as well as be able to pay the bills.

As a recipient of ODSP, I find it a challenge to find work that makes it worth the deductions from social assistance. Part of the problem is that it seems that the deductions are taken off with the assumption that any income we make in the previous month will be used for the next month. I can tell you that it is not. Often, because ODSP does not adequately cover all the costs of living, recipients who are working use income in the same month that they earn it. This means that there is no saving for the month ahead, and the deductions actually serve to create a cycle of debt and poverty that is increasingly harder to break.

Also, with the current economy and job market, it is extremely difficult for persons with and without disabilities to get a job that would lead to coming off of social assistance. The amount paid by most jobs available are not sufficient to take the place of the deductions in a person's social assistance and so there is a constant need to find a better job, leading to an inconsistent history of employment, as well as an increased risk of a person burning out and becoming depression and/or further disabled mentally.

By the time a person is able to find a decent paying job that does not cost a huge amount of emotional stress and is able to gradually have social assistance withdrawn, the person is in quite a bit of debt due to the cycle created by earning deductions in social assistance. In such a situation, it is near impossible for a person to save for the future, either for needed items for a new job, or items to enhance quality of life, or to put towards miscellaneous costs such as over the counter flu and cold medications as well as other medical costs that are not covered by benefits, or towards retirement in old age.

The Registered Disability Saving Plan is an attempt to allow persons with disabilities to save towards their old age, however, there are some concerns about being able to get accounts registered. For accounts to be registered, a person must have the Disability Tax Credit, which has a different definition and set of requirements than ODSP. What is puzzling is the mix of seemingly specific yet vague criteria needed on the applications. What is needed is a standardized definition of disability so that ODSP recipients applying for the tax credit in order to register their RDSP is able to be approved and thus be granted financial security for the future by saving what they can afford from jobs, especially if they are able to get jobs that just barely gets them off social assistance but not improve their quality of life.

What is also problematic is how education is handled by ODSP. ODSP is suppose to not deduct earnings if a recipient is taking post-secondary education classes. However, there are times in which earnings are deducted despite the recipient informing and even providing documentation of their student status. This is especially the case during the summer months, when there are also classes available for students.

Between being unable to save for the future, and being unable to save for post-secondary education that may especially prove to lead to higher-paying employment, ODSP often hinders the efforts of recipients to gain adequate employment to no longer require social assistance and be able to improve one's quality of life. Rather than aiding people, social assistance as it currently operates perpetuates and increases poverty conditions for low-income persons, families and disabled people.

Getting Ready for ASDay 2011!

2011-08-22T10:22:00.002-04:00

Whew!! Things have been busy for me this summer!

I'm currently working on an essay on violence and disability for school, an article on functioning labels for AWN, and a piece on self-definitions of recovery for here. Some of them, just when I think I have all the materials I need to finish them, someone mentions some very good resources that make me rethink some of my points or what to include more information.

However, I'm also getting ready for Autistics Speaking Day 2011. It was an overwhelming success last year, with such a small amount of planning and advertisement. I'm excited to see the results of this year. I've read some of the responses to ASDay last year, and it's been incredible!! I am still blown away and amazed at people's responses.

So we're doing it again!!! We're a little bit more organized this year, got our Facebook event up in advance, and Kathryn and I have started an official blog so that we can compile everyone's contributions in one spot. It's still under some work, but it's up and running!

We're also going to be looking for people to help us out. Last year, we were a little overwhelmed by the flow of blogs. Kathryn was incredible being able to keep on track of everything on Facebook, and I had my hands full on Twitter. We'd like someone who is fairly familiar with social networking sites to help us out. But more on that later.

Yay!!! Our blog is up!!

To Yeti

2011-08-01T22:30:00.000-04:00

If you see my twitter and Facebook being flooded with pictures of a little white cat, it is because today Yeti is being put down.

Mom and dad say that she wasn't feeling well, not eating or drinking. They took her to the vet. Turns out all her organs are shutting down and she's dying. The vet can only make it happen painlessly and quick.

So afterwards, we're bringing her back home and laying her to rest amongst the roses she loved so much, by the house.

I remember bring Yeti home for the first time. It was after Lunamus died, we had gotten used to being a two-cat house. And we wanted a cat that would mentally stay young. So mom called all the pet stores and requested to be put on the notification list for simease- cross kittens.

I was walking home from high school, in my kilt and rowing jacket, when mom and Loren pulled up. "we're picking up Loren's cat," they said, and I got in. We were the first to respond, so we had the pick of the litter. And so we got the prettiest, more playful girl there.

She would climb up curtains and furniture, so Loren named her Yeti. Since I had Nibbles, an older cat that didn't like the young kitten, Yeti stayed in Loren's room for the night until Nibbles got used to her. At Christmas, she'd climb up the Christmas tree and sit in fake branches. As she got older, she loved to curl up under the tree and in boxes and corners.

Lately, she took to curling up at the foot of my paintings, which I found funny. I had used her temperament as inspiration for my character Kithara, and her colouring for another character, Joshi, both of Amhelaki Misadventures. The painting she liked was of those two characters.

She liked going outside and exploring, constantly getting into places where she shouldn't be. I've caught her sneaking downstairs into the basement, where the cats aren't allowed because of the sewing machines and because we keep it free of cat hair for guests with allergies. It was also routine to check a couple times a day where she was, especially at night. Once or twice, she did let locked outside for the night, but in the morning, she'll be on the porch, sitting on the rockers, waiting.

She loved sitting on the patio furniture, or in the flowerbeds by the house when she wasn't exploring the yard. She hunted birds, catching one last june, and bugs. When the neighborhood cats came by, she'd chase them off, but never got into fights.

She liked people, loved having attention and being petted, although only when she wanted it. She and dad had a routine; he would sit down to put on his shoes for work on the stairs, and she would circle around him, purring and then crawl into his lap. They would sit there for a while until she would jump off and he would go to work.

For everyone else, if she rubbed your leg and purred in the kitchen, you could pick her up and cuddle with her, but she fully expected food afterwards. Elsewhere, she's walk away and expect you to follow her to where she curled up. There you could pet and comb her, but not pick her up. She would just wiggle out of your grip, and jump down, or else walk down your back and jump.

She liked exploring too, would get into the neighbor's yards and then run back when she heard our door opening. Couldn't keep her on a leash or collar; she was double jointed and very flexible, would just slip through it. But we didn't worry, once we found that she knew the boundaries and didn't go near the road. She liked to go out the front door, and then circle around the house to the back to be let in.

The two times she stayed on her leash was when we took her for walks. Once, to the lemoint point conservation area. She'd walk for a bit, then stop to check out things off the path. Some times we'd carry her, when it looked like she was tired. Second time, we took her on a walk to the convience store for milk. She was doing the same for that, but the way back she walked the entire way, in the lead.

Even though she'd wander the longer she was outside, she always came home.

Canadian Autism Bills Pt 4: Petition

2011-07-08T21:15:00.002-04:00

So yeah, both Glenn and Ted haven't responded to me. However, I'm going ahead in my plans. I started a petition on Change.org!!!! You can find it and sign it here!

I need to come up with an image, but I don't know whether I can do it until I can get back to my very old version of Photoshop. Which won't be until after my DST 501 Rethinking Disability course ends, next Saturday.

Canadian Autism Bills Pt 3: Open Letter to Ted Hsu

2011-07-05T11:08:00.001-04:00

With the concerns about the Canadian Autism Bills, and the lack of response from Glenn Thibeault, I have decided to contact my own MP and address the issue with him. The following email was sent Ted Hsu, MP for Kingston and the Islands, on the morning of July 5th, 2011:

Dear Ted Hsu,

First of all, I want to congratulate you on your appointment to Member of Parliament for Kingston and the Islands. I am very pleased to be represented by such an upstanding representative, and hope that together, much good will come of it.

However, I need to come to the main reason as to why I am writing to you. Recently, Glenn Thibeault has re-introduced two Private member’s Bills, Bill C-219 and C-218, that has me concerned on many levels. Before I get started, I do need to disclose to you that I am a person diagnosed with Asperger Syndrome, and consider myself an Autistic individual, as Autism is a part of who I am, how I think and interact with the world. It is because of my identity as such that has me especially interested in these legislations.

Bill C-219 is the National Strategy for Autism Spectrum Disorders. To be honest, I am not sure what to make of it, since it seems a little vague. I am worried about the potential misuse of a national surveillance program, especially with the ongoing research into pre-natal testing for Autism. However, I am also hopeful for “the provincial government in providing education, professional training and other required supports for Canadians with Autism Spectrum Disorders”. I do hope that this includes adults and students, as a university student myself finding it difficult to both work and attend courses on social assistance.

What really has me and other Autistics worried is Bill C-218, the amendment to the Canada Health Act to include Applied Behavioural Analysis (ABA) and Intensive Behavioural Intervention (IBI) as services “medically necessary or required… for persons suffering from Autism Spectrum Disorders”. In fact, given the language and potential negative consequences of the Bill, I strongly oppose it.

As an Autistic individual, I can tell you that I do not suffer from Autism. Both my-self and many other Autistic people will tell you that what we suffer from is a society and environment that is inaccessible, and unable to understand and accommodate our needs so that we can flourish as active and contributing members of society. Part of this is the fact that often Autistic individuals are not included in local, provincial and national discussions about Autism, thus silencing our voices in matters that effect us and future generations. In correction of this error, I hope that you will work with us to make sure that Autistic voices are being heard within our communities, with our social services and organizations, and in our government.

The second part of language that I object to is the term “medically necessary”. I understand that the term is a legislative term, apparently used to ensure “that such services cannot be withheld by any province or territory” (Glenn Thibeault, email Wed June 29, 2011 at 11:59am to myself). However, it has the implications that Autism is a disease that is contagious and/or full of suffering and misery. This re-enforces harmful negative stigma and stereotypes about Autism, and can hinder Autistics from gaining meaningful education, employment and involvement within our own communities. This also gives a false impression as to the reality of our existence and our lives, making us out to be living lives full of tragedy, suffering and misery. In some cases, because we are “diseased” and because we are disabled, we are seen as sub-human, and this justifies abuse, discrimination and even murder of Autistic people, usually in the case of relieving us of our “suffering” or else in plain cruelty towards perceived inferior individuals. Thus, such language as “suffering” and “medically necessary” poses negative consequences on the lives of Autistic individuals and creates barriers for us to be a part of society and our country, if not outright threatening our lives.

And then there is the matter of ABA and IBI in terms of the legislation and in of itself. Glenn has tried to assure me that no one will be forced into ABA and IBI treatment, but both are early intervention treatments that focus on children, as young as possible. This means that recipients of ABA/IBI are not always given a choice, or even an informed choice, about whether they receive treatment. In the cases where they do object to the treatment, it is often taken as more proof that the child requires treatment. This leads to a situation where the child’s wants are not being met, in favour for the wants and perhaps ease of the parents, and even for the benefit of ABA/IBI providers.

There is a large community of Autistic individuals who object to ABA/IBI, because of how it traditionally treats Autistics, its philosophy and methods, and the possible failure for it to equip Autistics for life in the long-term.

Applied Behavioural Analysis and Intensive Behavioural Intervention is often toted as an effective treatment for Autistic children, usually citing studies where treatment has been found to successfully render children “indistinguishable from their peers”, which is the whole aim of ABA/IBI. However, such treatments suppress the natural coping strategies and communication styles of Autistic people, leaving them unable to cope with everyday stresses and situations. Individuals then experience a melt-down when entering adult-hood and are unable to cope with being independent, a valued ability in our society. This, combined with some of the dog-obedience-school like training of ABA/IBI treatment, leaves Autistic individuals completely dependent on caregivers. It should also be noted that this leaves them vulnerable to various abuses at the hands of caregivers and strangers alike, including potential sexual predators. It is noted that disabled people, men and women, are more likely to be sexually assaulted than non-disabled people.

There is also the issue of quality of life of a child undergoing ABA/IBI treatment. Most treatments call for up to 40 hours a week of sessions, on top of a child’s regular schooling and possible other therapies such as occupational, physical and speech therapy (depending on the needs of the child). Given the other stresses in a child’s daily life, 40 hours is a lot of work for a child. It is comparable to a 40 hour job for an adult, and leaves very little time for a child to engage in other developmental activities such as one’s regular routines to de-stress, plus a child’s natural desire to play and simply be a kid. Myself and other Autistic individuals consider this amount of time in ABA/IBI to be child labour, and is an inexcusable stress on a child’s life.

A counter-argument to the one I just presented is that ABA/IBI is worth it if it is effective in diminishing disabling aspects of Autism in the long-term. First, I would question what would be considered disabling aspects of Autism, and whether it is really something that is disabling a person, or whether it is society’s inaccessibility that is really the disabling aspect. In such a case, such arguments is then victim-blaming the disabled instead of working towards becoming more accessible and accepting of human diversity.

Second, I question the actual sources of their success rates. As noted by researchers such as Michelle Dawson, a lot of the studies concerning Autism do not meet quality standards required by other studies. Plus data from such studies do not always meet the conclusions made about it and represent false impressions as to the long-term effects of treatments for Autism, including ABA/IBI. I highly recommend Michelle Dawson’s work, as an Autistic individual herself with highly informative research at the University of Montreal, plus her experiences at the Supreme Court. Her work can be accessed at her website No Autistics Allowed.

Looking into the studies, it can be seen that when comparing treatments for Autism, ABA/IBI scores no higher than any other treatment. Even then, the treatments are not entirely clear as to the efficiency and success in the long-term, compared to no treatment at all. There are even some suggestions that treatments for some Autistics are unnecessary, due to the fact that Autism is a developmental disorder, meaning that development may progress in an unique manner, but does occur. It should be noted that this does not mean that Autistics do not require accommodations and supports in the classroom as disabled students, but rather that treatments to improve developmental milestones may be misguided.

There is one study that does highly suggest success for ABA/IBI treatment, and this is often the study that all other studies reference or depend on for proof of success. However, that study was done when ABA was developed, and uses the original methods designed by Lovaas in the late 1950s. Studies to replicate the results are impossible, since the original Lovaas method included aversives such as electric shock, physical restraint, yelling and hitting, purpose exposure to unpleasant physical stimuli such as loud noises, smells, and various forms of pain. These techniques were used on children and teenagers in treatment for Autism (in most cases, ironically, to reduce self-injury behaviour) and homosexuality. Since such techniques are now illegal, current studies are unable to replicate results, and thus prove that ABA/IBI is in any way effective or superior to other treatments.

I will repeat, the goal of such treatments is to render children to be as indistinguishable from their peers as possible by suppressing Autistic behaviours, coping strategies and interests. Given the long-term negative effects of such treatment, many Autistic people oppose ABA/IBI due to their own experiences upon reaching adulthood. Also given the many advances in art and technology that Autistic people have provided, I wonder whether such disabling treatments are necessary, especially if our society is striving to become more accessible, accepting and inclusive of disabled persons.

If our society is truly striving to be more inclusive of disabled persons, including Autistic individuals, then such legislation as Bill C-218 is a grave error. While attempting to improve the lives of Autistic people, it servers to re-enforce negative stigma and stereotypes that creates barriers to accessibility and inclusion, if not outright threatening our lives. I think that the Autistic people in Canada would be better served if we were included in discussions and conversations that ultimately concern us in our communities and on a national scale. There are many alternatives to Bill C-218 that would benefit Autistics more than this very flawed and limited source to a particular treatment.

Instead of treatments such as ABA/IBI, which are extremely costly with questionable benefits, Canadian Autistics would be better served with more teachers educated in teaching methods for an inclusive classroom, access to Alternative Augmentative Communication devices and assistive technology, education in inclusive classrooms that are designed to assist students to learning everyday living skills such as cooking and nutrition. Post-secondary students and adults could benefit from workshops to learn living skills, support groups and more opportunities to funding for post-secondary education, professional training and employment that suits their abilities and meeting their needs. There is a lack of supports for Autistic women in particular, in support groups, self-advocacy workshops and in women’s shelters. Often Autistic women do not know whether shelters can support them, and will remain in abusive situations.

This is just a brief list, limited in that it is only me thinking of alternatives. But if there were more Autistic persons involved, I am sure that a more complete list of ways that Autistics can be better served by our government will be created. I am proud to be Canadian, but I think that Canada can do better, and that Autistics deserve better than legislation such as Bill C-218. To us, Bill C-218 does not properly serve our needs, and I hope that you will part of including Autistic Canadians to create an accessible and inclusive Canada, and help us to oppose this bill.

Thank you for your time,

Corina Lynn Becker

Here's hoping for a good response!

Canadian Autism Bills Pt 2: Email Exchange with Glenn Thibeault

2011-07-04T23:02:00.000-04:00

As you might have known from my previous post, there are two Private member bills being re-introduced that concern Autism, and I have been attempting to have a discussion with Glenn Thibeault, the MP who is doing the re-introduction. Alas, his replies have been.... less than assuring....

Here's the discussion, so far:

June 24
To Glenn

Hi, I would like to have more information on the autism spectrum disorder bills, especially on what the national strategy would entail and the reasoning for ABA/IBI, especially when there is very little good evidence that demonstrates that it is effective and beneficial for individuals with autism spectrum disorder. In fact, many adults with ASD strongly disagree with ABA methods and traditional philosophy. It would be beneficial for all people, children, teens and adults, if autistic people are included in the creation of legislation that ultimately affect them.

~Corina Becker

To Corina

Corina,

I can assure you that I spent a great deal of time liaising with autism groups before bringing these bills forward, and I have personal experience working with individuals with autism as prior to being elected to Parliament, I graduated from the Developmental Service Workers program at Cambrian College in Sudbury and I worked as a behavioural consultation in Vancouver.

Neither of these bills would force individuals to use ABA/IBI; they would simply ensure that no individual who wished to have access to the treatments could be refused by their provincial health service.

The two bills can be found online at:
1) http://www.parl.gc.ca/HousePublications/Publication.aspx?Language=E&Mode=1&DocId=5091810

2) http://www.parl.gc.ca/HousePublications/Publication.aspx?Language=E&Mode=1&DocId=5092022

All the best,

Glenn

June 28

To Glenn

Hello Glenn, it's very nice of you to provide links to the Bills.

I am aware of your time as manager of Residential Programs for Youth and Adults with Disabilities. It is conceivable that you had contact with some Autistic individuals there. However, there is quite a spectrum of individuals and autism groups. It would be beneficial to know which autism groups you have liaised with, as to be fully aware of your specific experiences. This is especially important given the rather offensive wording in Bill C-218.

Far from assuring me, you have deepened my concerns, and have not answered my questions. So I will ask again, as an Autistic individual and voting citizen. Upon which scientific studies and knowledge did you base your decision to make ABA/IBI as "medically necessary", despite the numerous scientific studies that prove it to be no more effective than other teaching methods? Why did you single out ABA/IBI specifically, even though the majority of the Autistic community is strongly opposed to its methods and philosophy?

Why is it that you are not paying attention to the vast amount of Autistic citizens who oppose this bill, and persist to pass C-218? Especially when your own National Strategy for Autism Spectrum Disorders renders C-218 to be useless should ABA/IBI be an appropriate and safe method of teaching an Autistic individual?

I would appreciate more specific answers.

~Corina

June 29

To Corina

Corina,

Thank you for your continued correspondence. I have worked with a number of autism groups – both provincial and national - over the past three years while I have been in Parliament regarding these bills. ‘Medically necessary’ is a legislative term used in the Canada Health Act to mean that such services cannot be withheld by any province or territory. It has no influence on whether an individual should or should not have any specific treatment. While I understand your criticism of ABA and IBA, Bill C-218 would simply assure that individuals who wish to received these treatments have equal access to them, and this was an issue that numerous groups brought to my attention and asked for legislative chances to rectify.

All the best,

Glenn

July 1

To Glenn

Dear Glenn,
You have still failed to answer my questions sufficiently enough to address my concerns and fears. As such, I feel as though my voice as a voting Canadian citizen is not being heard.
I ask again, which autism organizations in specific have you worked with?
This is so that I can have a better understanding as to the scope of your autism experience. Some Autism organizations, for example, do not represent my concerns and needs as an Autistic adult.

Also, which scientific studies do you base your decisions that ABA/IBI is deemed to be more effective than other teaching methods to warrant it being singled out for Bill C-218?
This is despite the increasingly large amount of data that suggests that it is no more effective than other means of teaching, and various accounts that it might actually be harmful to individuals, as it suppresses their natural coping mechanisms and renders them unable to adjust to the realities of adulthood and independence. Which then leads them to be vulnerable to being dependent on service providers, some of which take advantage of their state.

I highly recommend reading the work of Michelle Dawson, an Autistic researcher at the University of Montreal who has covered numerous studies on Autism and has been involved with cases at the Supreme Court about ABA/IBI. You can see her work at her website No Autistics Allowed

Plus, ABA/IBI are early intervention therapies; they are directed to young children who are often not given a choice about whether or not they receive these treatments. When they do try to object, the manner in which they do so are often taken as more reasoning on why the children need treatment.

Furthermore, why do you use the term "suffering" in Bill C-218? This is problematic because I can tell you that numerous Autistic individuals, myself included, do not suffer from Autism; we suffer from society and autism organizations not being able to meet our needs, and misrepresenting us in our communities and in our governments.

Also, in terms of " medically necessary", while a legislative term, it suggests to the general public that Autism is a disease. While medically, it suits the definition, Autism is not a contagious disease, which is implied by the "medically necessary" and "suffering" terms. It may not be your intention, but the connotations of these words matter a lot. The connotations of these words support the negative stigma and stereotypes about Autistic individuals, that our existence is a tragedy full of misery and suffering. At best, these stereotypes make it difficult for us to gain meaningful education, employment and interaction within our communities; at worse, these stereotypes justify the discrimination, abuse and even murders of Autistic individuals, as we are seen as sub-human and our lives so full of suffering that it is a mercy to put us out of our misery.

With these connotations in mind, I ask that you rethink the terms that you use to create legislation, and not degrade the lives and experiences of Autistic people. I would also ask that you be more specific with your answers, as to reassure me.

Thank you for your continued correspondence,

~ Corina

Glenn hasn't responded to me yet. It could be the long weekend that has him busy, but I'm not entirely sure. I wonder whether I will get a reply, or rather, having patted me on the head, he has dismissed the contents of my emails entirely. Time will only tell.

Canadian Autism Bills

2011-06-25T16:54:00.001-04:00

So I was on twitter yesterday, and a link in a tweet caught my eye. It was a link to this piece.

Curious and worried, I emailed Glenn Thibeault:

Hi, I would like to have more information on the autism spectrum disorder bills, especially on what the national strategy would entail and the reasoning for ABA/IBI, especially when there is very little good evidence that demonstrates that it is effective and beneficial for individuals with autism spectrum disorder. In fact, many adults with ASD strongly disagree with ABA methods and traditional philosophy. It would be beneficial for all people, children, teens and adults, if autistic people are included in the creation of legislation that ultimately affect them. (my signature)

And he responded:

Corina,

I can assure you that I spent a great deal of time liaising with autism groups before bringing these bills forward, and I have personal experience working with individuals with autism as prior to being elected to Parliament, I graduated from the Developmental Service Workers program at Cambrian College in Sudbury and I worked as a behavioural consultation in Vancouver.

Neither of these bills would force individuals to use ABA/IBI; they would simply ensure that no individual who wished to have access to the treatments could be refused by their provincial health service.

The two bills can be found online at:

1) http://www.parl.gc.ca/HousePublications/Publication.aspx?Language=E&Mode=1&DocId=5091810

2) http://www.parl.gc.ca/HousePublications/Publication.aspx?Language=E&Mode=1&DocId=5092022

All the best,

Glenn

Now, as I'm not at home right now and am using my iPod, and it takes me a while to sort through and process what I'm reading on a bigger screen, I was wondering whether anyone had any more information on this? Or even thoughts and feelings about these two bills?

The Limitations of the word "Neurotypical"

2011-05-12T00:35:00.000-04:00

The word Neurotypical, or NT, is used quite a bit in the Autistic community to refer to non-Autistic individuals. Lately, I've noticed some discussion on whether it is an accurate term, or whether there is a better term to use without being discriminating to the non-Autistic population.

As I understand it, the term Neurotypical was created by Autistic persons in response to the use of the word "normal" when being compared to the rest of the human population. Many times, it's been used mockingly, through parody sites such as the Institute for the Study of the Neurologically Typical.

I've also seen it used as a shorthand, or as an alternative for non-Autistic people.
From what I can see, there has also been some debate on whether Neurotypical includes or excludes other variants of neurological diversity, and how exactly the term should be used, if at all.

However, if one considers the Neurodiversity philosophy, then the term Neurotypical is at worse a flawed term, and at best a term that will become, in time, irrelevant and fall out of use. Or else will come to encompass Autistic individuals as well as other forms of diverse neurology.

This is because Neurodiversity philosophy considers Autism as a natural part of human diversity, thus making it a part of human typicality, or normal. As this becomes a fully embraced concept applied to all forms of neurological diversity, there will be no need to make and use the term Neurotypical as a division between neuro-types.

In a sense, we will all be Neurotypical, so there will be no need to use the term anymore, except for an explanation of previous articles and texts.

In this context, I don't really see a point in creating an alternative term, since if there are improvements in the world, the term will be discontinued. It is a term with a very limited period of use. To create an alternative, then, is to halt the progress that we have been making, and even to discriminating to other members of diverse neurology.

After all, the ultimate goal of creating the term Neurotypical is to eventually not use it.

Press Release from ASAN on PBS' Autism Now

2011-04-27T23:44:00.001-04:00

Whew! I'm currently recovering from the end-of-school-year crunch. I had several papers due within days of each other, plus an online exam and a relapse in Panic attacks. PLUS I've been doing some work for the Canadian elections advance polls, because democracy is cool.

However, I just got this press release from the Autistic Self Advocacy Network, and since I've been paying some attention to what's been going on, decided to share.

AUTISTIC COMMUNITY CONDEMNS PBS NEWSHOUR'S "AUTISM NOW" PROGRAM FOR IGNORANT REMARKS

Robert MacNeil claims needs and perspectives of Autistic adults today not an "urgent issue"

WASHINGTON, DC (April 27th, 2011) - An outpouring of widespread anger emerged from the Autistic adult community last night as journalist Robert MacNeil of PBS NewsHour claimed that issues facing Autistic adults were not "an urgent issue" and not important enough to merit coverage. Asked why his "Autism Now" series failed to include autistic adults amongst those invited to participate, MacNeil stated, "We tried to concentrate on what we thought were urgent issues, urgent problems. And a lot of adults with autism, particularly those who describe themselves as a kind of neurodiversity community, are high-functioning people with autism, who have busy and productive lives in the world, who serve a wonderful purpose of helping the community at large to understand and witness autism and be tolerant of it. But they speak for themselves. And we didn't see them as an urgent issue, as urgent as the impending arrival into adulthood of hundreds of thousands of teenagers with autism."

"Robert MacNeil's comments last night displayed a level of ignorance that is shocking to hear for a professional journalist," stated Ari Ne'eman, President of the Autistic Self Advocacy Network (ASAN), "To ignore the widespread discrimination, lack of services, un- and under-employment, stigma and countless other issues facing hundreds of thousands of Autistic adults todayis unconscionable. Furthermore, to pretend that any comprehensive account of autism is meaningful without substantively engaging with Autistic people ourselves is disgraceful and offensive."

The series had already attracted significant criticism from self-advocates and other community members, who were disappointed in comments MacNeil had made in promotional interviews claiming that Autistic adults were disproportionately violent and lacked empathy, popular and inaccurate stereotypes about adults on the autism spectrum. Numerous e-mails, blog posts, phone calls and other communications from self-advocates on the autism spectrum had expressed that inappropriateness of those remarks as well as failing to interview or involve Autistic people themselves in what was billed by PBS as "the comprehensive look at the disorder and its impact that's aired on American television in at least five years."

"I am an Autistic person who does struggle with daily living needs. I am really bothered by Robert MacNeil saying that people like me don't have 'urgent' challenges," said Savannah Logsdon-Breakstone, an Autistic woman and neurodiversity advocate in Utica, Pennsylvania. "By not talking to Autistic adults in his series, Mr. MacNeil is ignoring the unemployment, risk of homelessness and many other problems that people like me face."

The Autistic Self Advocacy Network (ASAN) is the nation's leading advocacy organization run entirely by and for Autistic adults and youth. ASAN's supporters include Autistic adults and youth, cross-disability advocates, family members, professionals, educators and friends. ASAN was created to provide support and services to individuals on the autism spectrum while working to change public perception and combat misinformation by educating communities about persons on the autism spectrum. The organization's activities include public policy advocacy, community engagement to encourage inclusion and respect for neurodiversity, quality of life oriented research and the development of Autistic cultural activities and other opportunities for Autistic people to engage with others on the spectrum.

Note: The previous quote has not been edited by me. Other than font size, cause it was a little hard to read. Also, my general response to Robert MacNeil have not been nice, so I will refrain from posting them here.

Buttons!!!

2011-03-30T10:38:00.000-04:00

I love buttons, the pin kind that I have a small collection of, and the image kind for links and stuff. I've been busy working on assignments for school, but I do manage to browse a couple of places online, and decided I need a button. So I made one.

Feel free to use if you link to here.

And in other news, April is Autism Awareness Month, apparently. Huh, that time of year again. I always have fun with this, because I'm in Canada, and usually we have an Autism Awareness week sometime in Fall....

April is a rough month for me, to be honest. The demands of schoolwork aside, it's an emotionally rough month. April 1st is the anniversary of my Grandpa's death, and that was an event that deeply impacted me. Each year, when it comes around, I am always struck with great grief. Some years are better than others, some years I can get by just fine, other years I am struck with depression and anxiety, which shakes me up pretty badly.

Hopefully this year won't be so bad, but please excuse me if I'm a bit absent a while longer.

I have written a piece for The Thinking Person's Guide to Autism for April. I'm not sure when it'll be up, but I'm pretty sure that it will be, and I highly encourage people to check out all the stories they'll be posting for this month.

Developing Apps for Autistic Adults

2011-03-07T11:19:00.000-05:00

First and foremost, I want to apologize to my regular readers for the lack of updates lately. I've never been good at being consistent at the best of times, and being in school adds a whole 'nother level of distraction for me. The two courses that I'm taking are online, which apparently means that it requires a lot of feedback, which, given my learning disabilities, becomes problematic. As well as new opportunities to test some apps, but that's a different post.

Second, I was recently contacted by Johanna Manikiza, asking my help and advise about apps for Autistic adults. She is an ASD Regional Support Officer at the Social Services Improvement Agency in Wales, UK. Her team supports the implementation of the Strategic Action Plan for ASD, and they are looking into the use of mobile phone apps to support Autistic Adults. They have been able to secure funding to develop an app, and was thinking about developing one to support sequencing daily activities.

However, they've decided to gain feedback and suggestions from the Autistic community, and contacted me due to a comment on one of my blogs about the need for a social skills app to support Autistics in adulthood. Johanna has asked for both my input, and the input of others that I know.

I want to say thank you to Johanna and her team, for making the step to include us in decisions and supports for us. It demonstrates true community-building attitudes that can really make a difference.

As for my readers and fellow Autistics, this is a chance for us to work with others to support one another. I highly recommend getting in touch with Johanna's team with your suggestions and advise about developing apps to support Autistic adults.

They can be contacted at ASDinfo @ WLGA.gov.uk, and would appreciate any feedback that we can provide them.

50 Best Blogs from OnlineUniversities.com

2011-02-09T02:33:00.002-05:00

Edit: I've been notified that the whole 50 Best lists thing may be a scam. For the safety of my readers, I've removed the link to the post until further investigation.

I got this email sometime after my last post, and was first distracted by jubilant glee, the fact that I have two assignments due Friday, and a complete emotional crash that I'm not going to get into on here. Let's just say I had my hands full, and bounced around the entire range of human emotions, and almost the entire spectrum of functionality, within less than 12 hours.

Anyways, the email I got is this:

Hi Corina, We at “Onlineuniversities.com”, wanted to let you know that we featured your blog in one of our recent articles on our own blog. 50 Best Blogs for Special Needs Teachers, is linked below and could be a fun way to share this announcement with your readers. Either way, I hope you continue putting out great content through your blog. It has been a sincere pleasure to read. Thanks, Kaitlyn cole

I'm number #26, in the Neurodiversity section, where I am described as such: "In spite of its relatively lax update schedule, No Stereotypes Here still provides special education teachers with straightforward talks about the autism spectrum."

I'm mentally adding "from an autistic adult" onto the description, but am fairly pleased (and laughing; I have an update schedule?).

There are also some other interesting blogs on the list, some which I know, others than are new and which I'm hoping to get to know soon.

Questioning Autism Speaks

2011-02-08T10:39:00.001-05:00

I recently had a discussion with the Autism Speaks twitter account, which was an interesting experience. It is very easy, I think, to generalize when talking to an organization's account. I was constantly editing myself from saying "you" to "your org" (org stands for organization), and remind myself that while the person on the other side is speaking on the behalf of the Autism Speaks, that person is not the whole of Autism Speaks.

That aside, the conversation was started when I found Autism Speaks following me on Twitter, and a friend and I were discussing why, even though I strongly dislike the organization, I wasn't outright blocking it. This is because although I oppose a lot of what Autism Speaks says and does, I still maintain that it's possible for the organization to change and become something that I might actually support, and part of that is keeping lines of communication open.

What sparked a rather heated discussion was when the Autism Speaks twitter asked me why I disliked them so much. Some of the reasons included the censorship of an autistic teen's parody website; the many "awareness" videos that have demonized and offended not only Autistics around the world, but over 60 disability organizations; the fact that according to their own IRS 990 forms for 2009, only approximately one cent from every dollar raised when to providing assistance to Autistic families and most of the money goes to CEO salaries, first class expenses, advertising, and research for things that many of us disagree with, such as a "cure" to Autism; and the resounding fact that despite it's slogan of Autism speaking and listening, Autism Speaks ignores a lot of what Autistics say and have made some public relations attempts to appease us, without addressing the fact that there is not one Autistic individual on the Board of Directors or in any major influential position that indicates that Autism Speaks is actually speaking for Autism.

It is the opinion of myself and many others in the Autism and cross-disability community that until these issues are met and dealt with, that Autism Speaks has no right to claim to be the voice of Autism, and that it is a corrupt organization posing as a non-profit.

I went into the conversation thinking that maybe I could at least talk to one person in Autism Speaks about the issues I had with it, and found myself becoming increasingly angry. Despite the links to their own website, the person on the Autism Speaks account denied everything, and said that my facts were wrong. That because the Better Business Beau gave them a high rating, that my facts on where the money goes, and how Autism Speaks treats Autistic individuals, is wrong. They refused to make discuss anything else regarding my disagreements with them, ignoring my questions on how Autism Speaks is changing for the better and just repeatedly stating that I was wrong, wrong, wrong.

Which, if you imagine, doesn't endear them to me any more, and if anything, has only re-enforced to me the issues that I have with them.

What I wonder is this, is it really bad PR for Autism Speaks to admit that they've done wrong? To say "Yes, we did this this and this badly; this is what we plan to change about ourselves"? I understand not wanting to admit that they made a mistake; no one really does. But I think that Autism Speaks will gain far more by being more open about these issues.

By admitting their mistakes, they show humility, compassion, and respect towards the Autistic individuals who they've wronged. It sparks not only healing and commitment to change towards those individuals, but within the organization itself, and prompts it to be responsible.

By committing and then doing those changes, Autism Speaks will actually win over all the Autistic and supporting activists, bringing together the community for the better.

So really, I wonder, how can they afford not to do this? Or are they that paralyzed by fear? Or are they really as corrupt as we think they are?

Poverty and Affordable Housing

2011-01-06T20:38:00.001-05:00

This may seem a bit off topic-ish, especially with the news about Wakefield going on. To be perfectly honestly, I'm not entirely surprised that he's been found to have changed the children's data and it really hasn't changed my opinion about him (see The Triggering of Wakefield). So I'm going to continue on and address an issue that affects a lot of people, not just Autistic people.

Poverty and homelessness is an issue that face Autistic people, as well as people with and without other disabilities. A concern for those with disabilities is whether homeless shelters, women's shelters and other services are supportive of their disabilities, and uncertainty may be a big factor in whether disabled people access such services. Which kinda creates a cycle unless it's specified that services are accessible to disabled people.

My government has been working to create unique programs and services for people with disabilities specifically. One of these has been the Ontario Disability Support Program (ODSP), a social assistance program that provides the basics: a little over $500 for living costs such as food, telephone, etc, and up to $450 for rent, per month. It's basically a safety net for people with disabilities if they are between jobs, or recovering from a bad period, and the program even includes an Employment Support services, and will cover some additional medical costs, such as service dogs, diabetes supplies, breathing machines, etc.

For the other services it doesn't cover, being on ODSP qualifies people to other programs. There's a lot of paperwork involved, of course, and it requires people to be as productive as possible while describing their worst days. But one of those programs in my city is the centralized housing list for subsidized housing, since $450 doesn't get you a decent place to live in this area.

The problem is that there's a lot of people on that wait list. My city does a magazine, profiling restaurants, venues, and highlighting city issues. In the latest issue, it reports that as of July 2010, there are 1,133 applicants currently waiting for access to social housing. With the given rate of vacancies in the city, it can take at least six months for a three- or four-bedroom unit, or up to eight years for a single-room unit.

Obviously, there needs to be more available units and in the magazine article, the issues surrounding making decisions on where to build mixed-income housing is discussed. However, due to various difficulties (such as the city's own zoning and building restrictions), it can take up to eight years for many housing units to start being built. In the meanwhile, there's still a lot of people waiting for places to live and call home.

I faintly recall a few years ago a plan to start a portal subsidized housing. The idea is that people on the housing list can find a place to live on their own and get off the housing list a lot quicker.

It's like this: say I'm on the housing list. I've gone through the application process and have been approved for social housing. Instead of spending eight years couch-surfing or hopping between shelters or enduring abusive situations, I can look around for a place that meets my needs.

After some looking, I find a nice apartment that's easy for me to access the public transit system, a grocery store, as well as other services, or at least to be able to get to other services. I'm on ODSP though, and can only afford $450 a month, and the apartment is $750 a month.

I talk to the landlord/lady/person, and make an agreement with him that he'll hold the apartment while I apply to the housing list. Then I fill out a form, asking for support for the other $300 for rent from the social housing program. The landlord/lady/person and I fill out the details of the place, sign it, and submit it. If everything checks out, the housing list approves of it, and there you go, I have a place to live and I'm off the housing list a lot quicker.

Of course, I don't know all the specifics that this would have to be put into place, but I think it's better than a waiting game where one never knows when they're going to have a place to live. Also, it gives the people a sense of respect, dignity and control over their own fate.

Edit: minor editing over the difference between rent and ODSP; I really can't do math in my head.

A year in review: 2010

2010-12-31T08:35:00.002-05:00

It has been a pretty intensive year, so busy that I think I missed the first anniversary of No Stereotypes Here!

About this time last year, the board of directors and myself at the Autism Women's Network was preparing to launch the website for the first time. Since then, it's been non-stop excitement working on various issues. I'm actually surprised I found time to blog and keep track of it all, especially with the new DSM drafts, our board members working with the White House, and the whole Pepsi refresh contest. It's a lot to try and keep up with and blog about.

As for my own events, it's been a little tipsy turvy, with two moves, the drama of new house mates, the usual fussing over medical issues, and my own personal studies.

In the beginning of this year, I had been studying in a Library and Information Technician program, but after all the blogging I've been doing, I decided to sit back, give myself a summer vacation, and think. I thought about being employed, and how much energy and resources that would cost me. I thought about trying to balance work with what I do the most, writing. Writing novels and writing about Autism.

And then I made another decision. I decided that I would be perfectly miserable if I could not write, and was not involved with Autism issues. And if I was miserable, I would be setting myself up to fail, crash and burn out, over and over again. And I do not like those experiences.

So I decided to dedicate myself more to Autism and disability issues, and to educate myself more. Because it's all good that I sit here and write my opinions and thoughts, and I hope that even that has made a difference for at least one person. But I'd like to try and make a large difference, because I see things that don't seem right, and I don't see anyone stepping up to change things for the better. And to do that, I need to know more things about how to make changes in my own country, province and town.

And so, I applied for the Disability Studies program at Ryerson University. Earlier this month, I was accepted and am preparing to take courses on-line, starting in January. For me, this is a big and exciting step towards being an active citizen, despite financial difficulties. I hope that I'll be able to share with all my readers the things that I'll be learning, and how I plan to apply them to practical use.

As the year draws to a close, I think back on what has happened on this blog over the year, the success of ASDay, and everyone I've met online. And I think about the year to come with hope that as good as this year has been, that next year will be even better!!!

Happy New Year everyone!

Merry Christmas!

2010-12-25T00:00:00.004-05:00

Two characters from my webcomic Amhelaki and I want to wish you all a Merry Christmas and a Happy New Year!

Recipes for Autism Hope

2010-12-03T19:42:00.000-05:00

I'm going to be extremely honest; there are some things about myself I don't like, and one of them is how I'm still angry and hurt over the Autism Speaks "Autism Every Day" video, especially the parts with Alison Singer. However, I understand that she's changed, left Autism Speaks, and started the Autism Science Foundation. Recognizing this, I am working towards healing the hurt I feel and beginning the process to forgive her. I hope that one day I'll be able to fully forgive her, and I am very glad that I've made this decision.

Because really, there needs to be more science-based knowledge about Autism, and I think that the Autism Science Foundation plays a key part in "providing funding and other assistance to scientists and organizations conducting, facilitating, publicizing and disseminating autism research" and contributing to Autism Awareness.

They consider strict scientific standards and values to be essential in Autism research. This is crucial to understanding Autism as it makes as sure as possible that the results are accurate, and better understanding means better approaches and supports in our communities. Truly, this is one of the best gifts that can be given to families and individuals on the Autism Spectrum.

Currently, ASF is raising funds with Recipes4Hope, and every dollar raised will go towards science-based Autism research dedicated to discovering better ways to recognize Autism and implement better supports and enhance the lives of Autistic persons.

With the hope of a better future for all Autistic persons, I encourage everyone to contribute as you wish, to donate if you can, and to spread the word as far as you can.

Meeting the Autistic Artist

2010-11-29T19:07:00.001-05:00

I don't think I've mentioned it a lot here, but I also do quite a bit of artwork, and sometimes I let people see my work. For the past month and a half, I've had a lot of my work at the Kerry's Place Autism Services Resource Centre in Belleville, Ontario, as part of the Spectrum Art Show. I kinda started the Show five years ago when I worked for KPAS.

Tomorrow, November 30th, I'll be at the Resource Centre from 2pm to 6pm for a "Meet the Artist" event. I'm being presented as an Autistic artist and Autism advocate.

If any of my readers are in the area, and have the time, it'll be awesome to meet some of you!

(yeah, a little last minute, I know. I'm sorry)

Surviving the Holidays with Autism

2010-11-22T18:06:00.000-05:00

Up here in Canada, we had our Thanksgiving back in October, so we're all getting ready for Christmas/Hanukkah/other winter holidays. I'm going to be very honest: I celebrate Christmas, so my default for the holiday season is Christmas. This doesn't mean that stuff I say cannot be used for other holidays, it's just a religious difference, use as need.

But I'm kinda using my own experiences for this, so I'm going to resort to my default of Christmas. Also, I'm mainly addressing parents in this post, but I'm certain that some of these pointers can be used for Autistics of all ages.

But yes, the winter holiday season is approaching, and it's a very busy, hectic and overwhelming time of year, full of all the things that set off Autistics and other highly sensitive individuals. The season is full of parties, religious events, meeting a lot of people and having relatives all crowd together, malls full of shoppers and noisy music, and regular family festivities.

From my own experiences, there's nothing really new in terms of needs and challenges, just that the time of year makes everything more chaotic and intense. Add in the excitement for a countdown, the anxiety of a lot of surprises, plus a lot of the goodies that get passed around, and it's no wonder that things get overwhelming. The trick is to manage the new sources of over-stimulation and stress while still participating in the holiday so that everyone can enjoy.

Social:
The holidays are filled with meeting people, lots of relatives, crowded house, parties, and other social complications that can make the basics, such as manners for receiving presents, more difficult to remember and perform.

Please keep in this in mind when interacting with others, that even if you know an autistic that is capable of being more polite, the overwhelming pressure on their social skills (and other skills) may mean that they are functioning on a lower level than their norm. It may be taxing for them to remember simple Please and Thank Yous.

Be mindful of this, and be patient. Little reminders on manners are okay, but don't be too insistent, because this is a very hard time of year and keeping the stress levels as low as possible all around is a good idea.

At events where its available, explain your and/or your child's needs, find a time-out corner for breaks, be mindful but try not to freak out at little slip ups, and if you find the stress becoming too high, leave early. Understanding friends and family won't mind too much, and you can get back to the ones who do. There might be some grumpy faces, but catching the stress at "grumpy" is better than "meltdown", where pretty much anything can set off a meltdown. So be very mindful of the warnings signs.

And if you think that so many events is too taxing, skip them. Take a break and pace yourselves. Friends and family members may not totally understand or be happy about it, but you're taking care of both your autistic child, and/or yourself. You could have a relaxing night at home, everyone doing a relaxing activity, maybe do something special if you think everyone can handle it.

I know that there are events that you can't skip, like certain religious events, or that mandatory company party. And to be honest, some of those are, well, boring for kids, and overwhelming in general, especially if it's formal (see sensory below). But don't be afraid to find a babysitter and go, even if it's for a little while so that you can fill the "I attended" requirements.

As for babysitters, it's good to give them some information about autism, so they know, but don't expect them to be professional respite workers. Look for someone who is friendly and flexible, and maybe have them meet the kids a few days in advance, if it's a new babysitter, so that everyone knows each other and you can see whether they get along. My parents tried to keep the same few babysitters, so even if there was an emergency, my brother and I would know the babysitter.

Also, parents, don't be afraid to take the time to go off by yourselves and have a night together. Everyone needs a break every once in a while during the holidays.

Sensory:
You probably could name quite a few sensory issues we Autistics have this time of year, as every thing becomes more intense, and we tend to react more because of that. I'm talking the crowds in mall, the rushing here and there, all the loud music and holiday jingles, strange and new foods, smells and textures, and winter clothes.

Again, a lot of it is the same issues each of us have, just more intense during the holiday season. As a result, it may be better to plan shopping trips for times when it's not so busy, or if that's not possible, to shorten the trips as to accommodate a lowered tolerance limit. It'll probably mean more trips, but it might also reduce overload.

Another sensory issue is foods, and there are many strange things to eat, with rather strange names. Don't worry about having your autistic test new foods; while it's certainly an opportunity to try new things, it may be more that they can handle during the holidays. If they consent to try a bite of something you think they might like, awesome. But be okay if they decide not to try it right now.

As for music, if you want to have it on, keep the volume down. If there's people over, well, you might want to just turn it off, because it becomes another source of noise.

The final issue I can think of for sensory is clothes. For me at least, this is big challenge during the winter months. I find that during winter, there's less moisture in the air, and so my skin becomes dry and more sensitive. This means even more sensitive to the feel of cloth, textures, and seams, especially after bathing when water has dehydrated my skin. Even sensory-soothing clothing can become irritants during this time of year.

To counter-act difficulties dressing due to this, I suggest bathing well in advance of events to give the skin time to hydrate and produce its own oils.

Also, in winter, fabrics are heavier, which is good for those who need more sensory input, but clothing contains more seams and restrictions of movement. Given the time of year, some articles of clothing are necessary to wear outside. So try to use the hat, mitts, scarves and other winter gear that your child seems able to wear the longest, but when possible, limit the amount of time they need to be wearing their gear.

As for the times where formal wear is required, it becomes a matter of how much your autistic can tolerate. Try to buy formal wear that can be worn for long periods of time, or else bring along a spare set of clothes, just in case. Otherwise, let your child wear what's comfortable and looks good.

Schedule:
Another source of distress during the holidays is the deviancy from our regular schedules. Understandably, there's a lot of things to keep track of, and it can get very busy and overwhelming. What I think is key is keeping as much of the regular schedule, with more cool-down periods. The normalcy of it will be grounding and calming, reassuring your autistic that things are still under control, and it helps transitioning between the holiday season and the non-holiday season.

For all the different events and activities, if possible and when appropriate, try to include your autistic in the decision making process. This will help them to be involved and be more informed about what's happening. This also gives them the opportunity to express what they'd like to do and experience the holiday better.

I also suggest to try to do the same things year after year; this makes the holiday a part of the yearly schedule, and as time goes on, may make the holidays easier as your autistic has a better idea of what to expect.

What I find is that after the holidays, or any big and draining events, I have a period of transition and adjustment to get back into the regular schedule. Sometimes this includes period where I regress in skills, tolerance and energy as I am recovering from the event, especially when I have been unable to maintain my regular schedule and practice skills.

During this recovery period, be patient and mindful that your autistic may be drained from the holiday, get back into the regular schedule as soon as possible, and allow them to have more quiet time periods. For me, to recover from a weekend usually takes about a week, but it's different for everyone.

As well as what I have above, I asked my mother for some tips and advice on handling the holidays. After all, she did raise myself and my brother, both of us with a wide range of difficulties for this time of year. So, from my mother:

1) Don't do too much on any one day; usually one event per day is enough.

2) Each morning, share that day's schedule with the kids, and only that day's schedule. Don't overwhelm them with future days and activities; stay day by day. Also have it that the kid can carry it along and refer to it.

3) Keep clothes soft and comfortable.

4) Have quiet time, and let them know that it's quiet time, so that they can relax properly.

5) For children who have a hard time staying at the table, have a candle on the table. Makes meal times more special, and keep their attention so they don't leave. Keep a plate under the table, and watch for fingers that start playing with wax. (Candles are a two-edged sword; can keep kid at table, but they may want to play with the melted wax)

6) Always serve some of the kid's favourite foods at every meal, so that if they don't like the big meal they at least have something to eat.

7) Make sure that relatives and guests know the kid's needs.

8) Limit the amount of people coming over and in the house at any given time.

9) Have a safe place for your kid to withdraw.

10) If you have a large family gathering, rent a hall. But make sure to keep a safe corner.

11) Don't force the kid to do greetings and farewells; it's too much commotion in the front hall.

12) Allow your kid to choose toys to hide away that they do not have to share, but at the same time, have your kid pick toys that they do have to share with other children.

13) If playing music in the background, have calm music and be careful of the volume.

14) When opening gifts, clean up the boxes and wrappers as you go, so that it's not too chaotic. After opening, take gifts to each person's respected places to keep the central space calm.

15) If the kid like puzzles, create a puzzle corner where they can interact with others one-on-one as they work on a puzzle.

16) Find some way that the child can contribute and make the holiday their own. Give them suggestions and work together on whatever the child chooses, such as help decorate, help making food, setting the table, putting stamps on and licking shut Christmas card envelops, etc

If you have any questions about this list, or you think I've missed something, feel free to ask and comment.

Merry Christmas and Happy Holidays!

Preservating for Causes

2010-11-15T13:12:00.000-05:00

While I'm pretty sure it can be annoying in some situations, preservating and being stubborn or determined can have some benefits. One being keeping at competing in contests for a long time, such as how the Autism Women's Network has kept in the Pepsi Refresh contest for so long.

Yes, I blogged about this some time ago; however, AWN did not make the top ten then, but since then has kept in the top 100 and kept in the running.

This month, AWN started at rank #5, and has slipped to #12. With the combined help and voting of the community, we can get back up into the top ten and finally be able to run the workshops and programs that this funding hinges on.

As a reminder of what AWN is planning to do with the money, here's the project profile on the Pepsi site.

The Autism Women's Network is unique in that it was founded by women on the autism spectrum. Our mission is to provide effective supports to autistic females of all ages through a sense of community, advocacy, and resources.

AWN's Project FAIM (Female Autistic Insight Mentoring) workshops will be the 1st of its kind.

We plan to set up 5 Project FAIM Workshops across the USA which will focus on qualities specific to females on the autism spectrum. Topics will include: peer supports, adolescence, adult life, relationships, vulnerabilities and successful communications.

Project FAIM Workshops will include active supports and information for everyone (autistics, parents, educators, etc.)

The participants will meet renowned autistic females whereby gaining valuable insight.

We will secure the Autism Women's Network non-profit status so we can continue to provide Community Events, online Forum support & E-Mentoring as well as our AWN Radio Show.

Please help us to continue to support Autistic females who may not have access to supports and accommodations otherwise. The workshops may be a small step towards a greater change and difference in many women's lives.

Thank you very much.

(Please pardon the decreased quality of my writing in this post; I am having some communication difficulties today)

(Disclosure: Corina Becker is the Director of Networking for the Autism Women's Network. However, all opinions and views expressed on this site are solely the property of Corina Becker and does not reflect the official view of AWN and other organizations unless specifically stated. )

Remembering

2010-11-11T21:19:00.001-05:00

Today is Remembrance Day and as I browse through the blog posts and twitter updates, I've been thinking.

I come from a Mennonite family, and so am a pacifist. I don't believe in war or that killing people is the answer to problems. I believe that a peaceful resolution is possible, and will work towards reaching that goal. And so, alongside a poppy, I don a button that reads "To remember is to work for PEACE".

It's a reminder that today, we don't just honor our veterans, but also acknowledge the goals to which our veterans made sacrifices for, the purpose in which they serve. Not only to protect us from potential physical harm, but to defend our rights and freedoms and the rights and freedoms of people all over the world.

Because when we remember war on this day, we remember the horrors of war. The rape, the torture, the mass murders of ethnic groups and the disabled.

We remember them as well, and we say "never again".

Never again will we silently witness the atrocities that occurred in the past.

But we're not done yet, are we? There are still wars going on, there is still people being discriminated against, people being abused, tortured, raped and murdered for no good reason. And there's really no justification for any of it. But as long as there is injustice, as long as there is hate, as long as every man, woman and child of every background and origin (and I mean, EVERY) cannot feel safe everywhere, we're not done yet.

And so, for the sacrifices of the past, the sake of the present and the hopes of the future, today we remember what has gone on before, in order to work for peace.

(this post was actually a little hard to write. I keep remembering my grandparents, Oma and Opa. They survived WWII in Russia. From what we know, Opa was drafted by gunpoint first by the Russian army, and then the German army before running away and surrendering to the American army. Oma apparently walked across Russia to follow the German army out of the country. They met in a refugee camp. Opa had apparently been engaged to another woman, but couldn't find her, and so married Oma. They moved to Canada when my Dad was 2 years old. That's what we know. They wouldn't say more and records from then are scattered and incomplete. Honestly, from what I do know, I can't blame them for not talking about it.)

What #ASDay Meant to the Autism Community

2010-11-06T00:00:00.000-04:00

Jeanne Holverstott has written an awesome post on Autistics Speaking Day, from the perspective of a service provider. With her permission, I've reposted it here.

Now that there is some distance and time from November 1, 2010, Autistics Speak Day, I have had time to reflect and put the experience in context.

In many ways, #ASDay was really any other day. Each person who moderated (thank you to the @TheCoffeeKlatch for allowing me to do so) and who participated in the Tweet chat brought their thoughts, feelings, experiences, two cents, and expertise. For those who are on the spectrum (i.e. @TMBMT, @CorinaBecker, @Heather_Sedlock), #ASDay was a moment in the spotlight. Not the interrogation spotlight that makes your heart race and your body sweat. Rather, the sharing spotlight, the all-eyes-on-you and what you say because this is a time to learn.

While listening to those in spotlight, I was amazed to read many Aspies and auties continually reminding everyone that their personal experiences captured their perspective but did not speak for the entire community. As the old saying goes: If you’ve met one person on the spectrum, you’ve met one person on the spectrum.

I was amazed by this contextualizing of personal experiences because it allowed the space for all voices to be heard equally. When I think about the public persona of ASD (a topic I’ve mentioned in my blog post, “Keep Your Clothes on, Jenny; Autism is Better than That”), Temple Grandin is the most well-known person on the spectrum. Many NTs use her as the paradigm for all experiences with ASD. #ASDay was in direct contrast. I spoke to many individuals on the spectrum who shared their life’s story while knowing it was only representative of their particular color on the spectrum. In so doing, they encouraged me to seek out others and ask, beg, and plead for their opinions on a particular subject, too. Crudely, I could compare it to a chili cook-off: Taste all the flavors. But, don’t pick just one. Get all of the recipes and savor them all.

I can only imagine what this day meant to individuals on the spectrum. I felt like part of a larger community that was often silenced and misunderstood. I tweeted as an “autism specialist” and had my spectrum of knowledge broadened (pun intended), but this is a selfish perspective. Those individuals on the spectrum, who countered the idea of being silent for a day to increase awareness (Communication Shutdown), were the main characters. And they were gracious, well-intentioned, determined, and respectful. They shared their day-to-day experiences in ways that people take for granted and can’t even begin to fathom.

#ASDay became more than just another day. It was a large-scale dialogue about daily struggles, successes, and challenges that we didn’t know about, couldn’t guess about, and, perhaps, never dreamed of. Lifetimes of day-to-day experiences congealed to document what it’s like to be a person with an autism spectrum disorder. #ASDay was a living, breathing, and talking personal and community history book with pages filled by unsung heroes with powerful stories.

I am glad I read a few pages.

The Success of Speaking

2010-11-02T17:42:00.005-04:00

[Nov 24, 2010 Update: updated the list of participant blogs]

Yesterday, November 1, was Autistics Speaking Day, and it was a resounding success!! I am completely speechless trying to describe it; I keep using the words "incredible" and "awesome", but truly these are weak words to accurately express it. The responses and contributions from everyone greatly exceeded my expectations.

I will be honest, when I proposed Autistics Speaking Day, I thought that at best it would be myself and a few others, tweeting on Twitter and maybe putting up a few blog posts. And when the criticisms came in, with people saying that much wouldn't happen, so why bother, I thought of two things. The two things that leads me to be active in the Autism and Disability communities.

I thought "Well, it might not reach too many people, but it's worth it if I can make even a little difference in someone's life."

And then I thought, "Well, you don't know that for sure, so what's the harm in me trying?"

Hope for the best, expect the worst, and be pleasantly surprised. And I was totally surprised. I don't think I have ever been so pleased to be so wrong before. It was great to see and hear everyone online. I want to thank everyone for their hard work.

I've gotten messages of people thanking me for putting ASDay together, but I don't think that's right. I don't deserve all of the credit. Yes, I thought of holding a counter to Communication ShutDown, and I thought of the name, and I nearly spammed Twitter getting the word out and explaining it. But on the day itself, what did I do? I did what everyone else participating did, I posted a blog entry, and shared my experiences with others.

I did not do it all; I do not deserve all the praise for the success of ASDay.

It was Kathryn Bjørnstad who started both Facebook groups, the event page, and the more permanent page. It was Melody Latimer that, when we were looking for a shorter Twitter hashtag, suggested #ASDay. It was Kim and Kathleen on the Autism Blogs Directory, Rachel Cohen-Rottenburg at Shift Journal and others getting the word out. It's LizDitz for following all the responses, posts and media attention. It's all sorts of people covering it in the news. It's the Coffee Klatch for hosting such an amazing conversation on Twitter. It was all the parents and professionals who took the time to listen, and supported us.

And most of all, it was every single Autistic person who joined in and participated. It couldn't have happened without any of you.

I am only one person, but together, we are a community of voices. I hope that ASDay was informative for many, and that the day inspired not only parents and professionals, but Autistics to be involved in processes and decisions that ultimately affect us. We should not be silent when we have something to say. And certainly, we weren't on November 1st.

Right now, I want to acknowledge all the participants and contributers who wrote blogs, all their hard work that made ASDay a success. November 1st was your day.

(The following list was made possible by Kathryn)

The participants:

1. Action for Autism’s Mike Stanton explains why Communication Shutdown is offensive, and what it is like when autistic people shut down in real life. http://actionforautism.co.uk/2010/11/01/today-is-autistics-speaking-day/

2. Alexander Cheezem writes an awesome open letter to Buzz Aldrin. http://aspieperspective.blogspot.com/2010/11/open-letter-to-buzz-aldrin.html

3. Allecto on dispelling myths about autism. http://allecto.tumblr.com/post/1456668266/autisticsspeaking

4. Alysia Krasnow Butler on her own son’s autism diagnosis and her friend’s son’s recent unexpected diagnosis. A beautiful post. http://trydefyinggravity.wordpress.com/2010/10/31/voices-carry/

5. Amanda Forest Vivian on problems with the kinds of things non-autistics are trying to “fix” in autistic people. This is really awesome and you should read it if you’re not familiar with the concepts of “ableism” and why it’s not necessary or even beneficial to “pass” for non-autistic. http://adeepercountry.blogspot.com/2010/11/autistics-speaking-day-post.html

6. Ari Ne’eman from the Autistic Self-Advocacy Network on Communication Shutdown and Autistics Speaking Day. http://www.autisticadvocacy.org/modules/smartsection/item.php?itemid=122

7. AS Parenting has an awesome article on autism (including nonverbal autism) and advocacy. http://www.asparenting.com/2010/11/01/asd-autistics-speaking-day/

8. ASD Mommy-I don’t know this blogger’s name, but it is a good post. http://asdmommy.wordpress.com/2010/11/01/i-will-not-be-silent/

9. A.S.S.G.O. (AS Support Group Online)’s post for Autistics Speaking Day. http://www.assupportgrouponline.org/apps/blog/show/5212238-supporting-autistics-speaking-day

10. Bev from Asperger Square 8 on communications and other things. http://aspergersquare8.blogspot.com/2010/11/squawk.html?utm_source=feedburner&utm_medium=feed&utm_campaign=Feed%3A+blogspot%2FZooX+%28Asperger+Square+8%29

11. Brigy Staples on the double standards people use with autistic people. http://speakingon.wordpress.com/2010/11/01/autistics-speaking-day/

12. Britt Kravets on social interaction and acceptance for the whole spectrum. http://blackbird3398.wordpress.com/2010/11/01/autistics-speaking/

13. Clay on Autistics Speaking Day; also contains Ari Ne’eman’s post. http://cometscorner-clay.blogspot.com/2010/11/ari-neeman-on-autistics-speaking-day.html

14. Codeman busting myths about autism. http://aut.zone38.net/2010/11/01/speaking-up-for-autism/

15. The Coffee Klatch on their Twitter event, which you should totally check out if you have Twitter. http://thecoffeeklatchblog.blogspot.com/

16. Corabelle Li Crol on the power of the Internet and autistic people. http://aspiegirlworld.blogspot.com/2010/11/autistics-speaking-day-post.html

17. Corina Becker’s guest blog on things she knows as an autistic person, and her post on her own blog for Autistics Speaking Day. http://blogs.plos.org/neurotribes/2010/10/31/corina-becker-communication-shutdown-for-autism-awareness-no-thanks/ http://nostereotypeshere.blogspot.com/2010/11/autistic-speaking-out-loud.html

18. Craig Thompson posted a video about autism and communication. http://www.youtube.com/watch?v=5wEO2oJ-qKc

19. Cripchick (Stacy Milbern) on the dangers of donating to non-profit autism organizations that are all about profit and do nothing for autistic people. http://blog.cripchick.com/archives/8612

20. Danillion on the Internet and autism. http://dannilion.com/2010/11/autistics-speaking-day-autism-communication-and-the-internet/

21. Darcy Reed is an autistic writer who writes beautiful poetry. http://spectrumhouseart.com/5Darcy1.html

22. Ed Ised had posted some things that I don’t quite agree with but his voice deserves to be heard as much as anyone’s. http://www.facebook.com/l.php?u=http%253A%252F%252Fdiversityrules.typepad.com%252Fmy_weblog%252F2010%252F11%252Fowning-ideas-and-selling-autism-awareness.html&h=2ff90&ref=nf

23. Elaine Caul on awareness. http://one-autistic-in-ireland.blogspot.com/2010/11/but-you-look-normal.html

24. Elspeth Thorne on growing up with autism. http://ysabet.thorne.id.au/2010/10/on-growing-up-as-alien-robot-among.html

25. Emily on autism and bullying. http://daisymayfattypants.blogspot.com/2010/11/autism-and-bulling.html?utm_source=feedburner&utm_medium=feed&utm_campaign=Feed%3A+blogspot%2FZgJi+%28A+life+less+ordinary%3F%29

26. Estee Klar on the dangers of trying to normalize autistic people with medication. http://www.esteeklar.com/2010/11/01/what-are-the-lies-we-believe/

27. Gavin Bollard on why a day of silence doesn’t work. http://life-with-aspergers.blogspot.com/2010/11/day-of-silence.html

28. Gaynell on the harm that society has allowed to be done to autistic people, particularly on physical abuse and restraint. This is an important issue in the community right now. http://wildflowersforjade.blogspot.com/2010/11/autistics-speaking-day-autism-mom.html

29. Gerry Lockhart on ASDay. http://www.asandtheirpartners.org/as-resources/16-interesting-articles/333-autistics-speaking-day.html

30. Heather Sedlock on her autistic son’s life. http://heatherbabes.autisable.com/734878474/thom-part-2/

31. Ian on his experiences with autism. http://youhaventmetyourselfyet.blogspot.com/

32. Jennefer explains what she would like people to know about her three-year-old autistic son, referred to here as HRH. http://www.thekingandeye.com/2010/11/communications-shutdown-day-for-autism.html

33. Jill with some general info on autism and ASDay. http://bookish-nerd.livejournal.com/13273.html

34. John Elder Robinson posts his support here. http://www.facebook.com/JohnElderRobison

35. John Scot Thorburn on how autistic voices should be heard. http://colorvalues.blogspot.com/2010/11/autistics-speaking-day.html

36. Julia on needing to talk. http://flashbackdreamsequence.blogspot.com/2010/11/we-need-to-talk.html

37. Julia Charlotte’s Anatomy of an Autistic. http://www.facebook.com/notes/julia-charlotte/anatomy-of-an-autistic/464893465232

38. Julian Edward Frost posts on his own experience with autism. http://autismjungle.wordpress.com/2010/11/01/autistics-spoke-and-you-listened/

39. Karen Baum writes her first blog post on Autistics Speaking Day, for which I am honored. http://theautisticstepmom.blogspot.com/2010/11/autistics-speaking-day.html

40. Karin has written several posts for today, which can be viewed here: http://bewaretheaspie.blogspot.com/

41. Kassiane on what she can tell you and explain about living with autism, and being on your autistic kid’s side. http://timetolisten.blogspot.com/2010/11/inaugural-post-autistics-speak-day.html and http://timetolisten.blogspot.com/2010/11/im-on-your-kid.html

42. Kathleen on autistic people and communication. http://autismherd.blogspot.com/2010/11/autistic-people-communicate.html

43. Kathryn Bjornstad writes about Autistics Speaking Day and shares a list of participants. http://autistickat.blogspot.com/2010/11/autistics-speaking-day-is-today.html

44. Kerry Cohen on her autistic son, who she has written a memoir about. http://www.kerry-cohen.com/musings.html

45. Kevin Healey shares the voices of autistic people. http://www.kevinhealey.net/?p=1056

46. Kim Wombles on supporting autistic people instead of shutting down. http://kwomblescountering.blogspot.com/2010/10/supporting-autistics-whoever-they-are.html

47. Leah Jane on how the Internet made it possible for her autism club to pull off a successful event. http://quixoticautistic.blogspot.com/2010/11/autistics-speaking-day.html and on the aftermath of ASDay http://quixoticautistic.blogspot.com/2010/11/aftermath.html

48. Lindsay on listening to disabled people. http://autistscorner.blogspot.com/2010/11/stop-look-and-listen-its-autistics.html

49. Luna Lightning on her own experiences with autism and life in general. http://spin-infinity.blogspot.com/2010/11/introduction.html

50. Maddy Keene on her experience with autism/Asperger’s. http://mmkeene.deviantart.com/journal/35987525/

51. Matt Friedman explains how social media has helped him and why autistics must speak for themselves. http://dudeimanaspie.blogspot.com/2010/11/autistics-speaking-day-path-to.html

52. Maya Brown-Zimmerman on battles with the early intervention system. http://marfmom.com/archives/2656

53. Melissa Fields on not feeling welcome in the non-autistic world. http://iamautistic---thisismylife.blogspot.com/2010/10/autistic-i-am.html

54. Nicole Nicholson shares an awesome poem with us for Autistics Speaking Day. She is also sharing other poems, so check them out. http://ravenswingpoetry.com/2010/11/01/wwp-poem-26-back-door-blues/#more-2517

55. Ole Ferme L'Oeil on the wide range of people in the autism spectrum; also includes some awesome links to other important blog posts that you should check out. http://humainsvolants.blogspot.com/2010/11/autistics-speaking-day-jour-de-parole.html

56. Pamela Harvey on the use of silence. http://thestampedenvelope.blogspot.com/2010/11/using-silence.html

57. Paula C. Durbin-Westby shares her e-mail to Buzz Aldrin about Communication Shutdown and Autistics Speaking Day. http://paulacdurbinwestbyautisticblog.blogspot.com/2010/10/facebook-message-to-buzz-aldrin.html

58. Rachel Cohen-Rottenberg on empathy and communication. http://www.journeyswithautism.com/2010/11/01/speaking-my-mind-and-heart/

59. Sandy challenges the idea that verbal communication is the best form of communication. http://www.aspieteacher.com/2010/11/press-pound-for-more-options/

60. Sarah Schneider on Autistics Speaking Day. http://www.kitaiskasandwich.com/2010/10/31/autistics-speaking-day-november/ and http://bit.ly/dkFBp4

61. Savannah posts poems about her experiences with autism. http://crackedmirrorinshalott.wordpress.com/2010/11/01/poem-articulate/

62. Scottish Mum on why Communication Shutdown is not for her. http://scottishmum.com/?p=85

63. Shanti writes about her life, selective mutism, and her obsessions. http://latedx.wordpress.com/2010/10/31/celebrating-autism/

64. Shelly Valladolid on autistic special interests and their validity. I don’t know a better way to put it; it’s a short but good post. http://stillfabulous.blogspot.com/2010/11/fab-speaks.html

65. Socrates from the New Republic on Autistics Speaking Day. http://the-newrepublic.blogspot.com/2010/11/autistics-speaking-day.html

66. Stuart Duncan on breakdowns in communication. http://www.stuartduncan.name/autism-communication/communication-breaking-it-down/

67. Sunday Stillwell writes an informative post on Autistics Speaking Day. http://www.extremeparenthood.com/2010/11/autism-shoutout-loud-and-proud.html

68. Sullivan from Left Brain/Right Brain will be returning to Facebook today. http://leftbrainrightbrain.co.uk/2010/11/catch-me-on-facebook-november-1/?utm_source=feedburner&utm_medium=feed&utm_campaign=Feed%3A+LeftBrain%2FrightBrain+%28Left+Brain%2FRight+Brain%29

and here http://leftbrainrightbrain.co.uk/2010/11/autistics-spoke-and-you-listened/?utm_source=feedburner&utm_medium=feed&utm_campaign=Feed%3A+LeftBrain%2FrightBrain+%28Left+Brain%2FRight+Brain%29

69. TMBMT on the pain of growing up undiagnosed. http://tmbmt.livejournal.com/26305.html

70. Tony Belcastro writes about what autism is like for him and how it has affected his life. http://elsmystery.com/index.php?option=com_content&view=section&layout=blog&id=3&Itemid=43

71. Toxicology Doc on communication. http://www.youtube.com/watch?v=idszVltvc3Y

72. Unstrange Mind on what you would have to do to really understand how her autism affects her. Hint: it’s not turning off your computer. http://unstrangemind.wordpress.com/2010/11/01/will-turning-off-your-computer-for-one-day-teach-you-what-its-like-to-be-autistic/

73. The Untoward Lady on autism and love. http://vibratingsquare.blogspot.com/2010/11/reclaiming-love.html

74. Vector’s post for ASDay. http://thautcast.com/drupal5/content/voices-autistics-speaking-day-alex-olinkiewicz

75. Zachary Lassiter on why many autistic people won’t be participating in Communication Shutdown. http://www.youtube.com/watch?v=2HwgbMTmR3I

76. I missed Nick Walker's post before, but here it is now. http://nickykaa.com/2010/11/an-autistic-speaking/

77. Also missed Jo's blog post here about the difficulties she has encountered raising a son with Asperger's. http://mumtoj.wordpress.com/2010/10/27/an-explanation/

78. Wendy on alt med, food allergies, and other things. http://raisingbutterfly.blogspot.com/

79. Spectrummy Mummy on her experiences with Autistics Speaking Day. http://spectrummymummy.wordpress.com/2010/11/02/an-ongoing-dialogue/

80. Elesia Ashkenazy's ASDay post. http://aspitude.blogspot.com/2010/11/autistics-speaking-day-2010.html

The Media:

http://www.examiner.com/special-needs-kids-in-nashville/communication-shutdown-day-is-answered-with-autistics-speaking-day

http://4zzznews.wordpress.com/2010/10/31/online-communication-shutdown-for-autism-awareness-criticised-by-autism-activists-talkaboutautism/

http://communities.washingtontimes.com/neighborhood/autism-unexpected/2010/oct/31/communication-shutdown-day-does-silence-promote-aw/

http://www.abc.net.au/news/stories/2010/11/01/3054067.htm?section=justin

There are some other lists here.

http://lizditz.typepad.com/i_speak_of_dreams/2010/10/why-i-wont-be-shutting-down-on-november-1.html

http://autismblogsdirectory.blogspot.com/2010/10/not-going-silent-on-november-1.html

Please, if we've missed a post, let us know! We want to acknowledge and thank each person who contributed. You all are awesome!

Autistic Speaking Out Loud!

2010-11-01T01:00:00.001-04:00

I've been thinking about what to post here for today, shifting through all my memories and experiences. To be honest, I'm pretty sure I could write a book covering it all. But the problem is always where to start.

I've had my share of troubles through life, and I still do and will have troubles. But I won't dwell on them or indulge in self-pity. Life is full of difficulties, and we all have our own specific difficulties.

So instead of concentrating on negative aspects, I choose to focus on my strengths and skills. One of these strengths is writing, and expressing myself through writing. Since 2009, I have been writing on this blog about Autism, and so for Autistics Speaking Day, I am listing some of the posts that I feel are some of my best work.

If people participating in Autistics Speaking Day would like to comment with their contributing blog posts or other forms of communication, please do so. I would love to see your words.

Explaining Asperger's as Autistic

On Neurodiversity

Regarding Success

Self Advocacy and Disability

Spoons, Batteries and Autism

Blogging as Communication

Language, Disability, and Injustice

The Triggering of Dr. Wakefield

The Propsed DSM-V Changes: Is it a Step in the Right Direction?

What I Want People To Know

The Perspectives of Luck and Autism

I can't say this enough; thank you all very much for your support and participation. By sheer response, this day has been successful beyond measure, and it is all due to your hard work and contributions.

Thank you, thank you, thank you all.

And here's to raising Autism Awareness and working towards a better future for all.

Addressing Criticism for Autistics Speaking

2010-10-30T15:17:00.002-04:00

Okay, there have been quite a few criticisms for Autistics Speaking Day. I would like to be blunt and address these:

1) this event is about autism awareness. Yes, it is a response to the Communication Shutdown, and counters it, but the ultimate goal is Autism awareness by providing autistic people a united opportunity to share experiences. By whatever method of communication possible.

2) there is no donation goal. Yes, people have suggested alternative organizations and things to donate instead of Communication Shutdown, but that is individual. On a whole, the purpose is about raising awareness.

3) Just because someone is doing something with good intentions doesn't make our feelings invalid. We don't like Communication Shutdown for reasons stated in the information. As autistic persons, we are completely justified in having an opinion on what's being said about us, and have a right to be involved in all matters that relate to us.
Thus, if we are upset by something, we have the right to do something about it.

4) we have never stated there is a limit on ability level for participants. It's rather presumptuous to assume that everyone taking part is of the same "ability" level.

Preparing to be Loud

2010-10-27T15:23:00.000-04:00

In my previous two posts, Real Communication Shutdown and Autistics Speaking Day, I proposed that on November 1st, instead of shutting down our online communication, that online Autistics be loud.

The idea is that since NTs are taking part in Communication Shutdown, and are at least going to not be saying anything on Twitter and Facebook, that we should take the opportunity to share our experiences and our strengths, and what it's like to be autistic.

While this is certainly a response to Communication Shutdown, whether it is a counter-event or protest of the Shutdown depends on whether or not you agree with Shutdown. This can be a complementary event, an alternative event or a counter-protest event. We can agree to disagree on the details about this. What matter though, is that people participate.

This event is open to EVERYONE, in every country and region. You want to take part, awesome! Go ahead; on November 1, tweet, post on Facebook and/or blog.

When I proposed Autistics Speaking Day, I merely thought that it'll be myself plus a couple of others participating. However, it turns out that there are a lot of people who feel the same, and different names for it, from Autism ShoutOut! to our Autistics Speaking Day.

The name for it doesn't matter. This is a day that is supposed to be about spreading Autism Awareness, therefore it's OUR day. It doesn't just belong to me, it belongs to all of us, and what matters is that we stand together to raise Autism awareness.

As I've said before, I would like the day to acknowledge our difficulties, yes, but also share our strengths, our passions, our interests, our "obsessions", while being mindful of the subject matters, as some subjects are triggers for people.

I'm not one for organizing this into an organized event; I'd rather this continue to be a very free-form event where people participate as they choose. As for me? I'll be online, on my Twitter that goes to my Facebook. I hope to post here as well, perhaps link to some of what I consider my best posts.

I will also be dedicating an hour of my Twittering for The Coffee Klatch at 2pm EST.

If you'd like a little more organization, Kathryn Bjørnstad has set up a Facebook Events page for Autistics Speaking Day.

Also, I believe the Autism Blog Directory is complying a list of Autistic blogs and participants, if you'd like to share with them.

Thank you all very much for all your responses and support!! I can't wait to hear you all on November 1st!

Autistics Speaking Day

2010-10-18T23:47:00.000-04:00

As I've previously stated, November 1st is Communication Shutdown, and from the responses, it seems that more and more people are questioning the method of this Autism awareness event. As has been pointed out by bbsmom, it spreads the myth that autistic people don't communicate, when in truth, we communicate in many different ways. While the attempt to understand our difficulties is admirable, I don't think that a non-autistic person can fully understand an autistic reality, even with some intense simulations.

Not that I'm against letting them try to understand us, as much as we try to understand non-autistics. However, from a community perspective, we should be listening to the different ways that Autistic people communicate.

At the end of my last post, I stated that on November 1st, Autistic people should speak up and be heard. That in the absence of NT voices, Autistics should reclaim the Autism community by communicating in our own ways on our life experiences.

Yet, I must also add caution, to be mindful of the subject matters, as some subjects are triggers for people. I would hate to hear that a person had a panic attack, flashback or meltdown and suffered due to something in the information shared.

I would like the day to acknowledge our difficulties, yes, but also share our strengths, our passions, our interests, our "obsessions".

And so, for the intent of raising Autism awareness and battling negative stereotypes about Autism, I call that November 1st be Autistics Speaking Day.

Who will join me?

Real Communication Shutdown

2010-10-15T15:09:00.000-04:00

On November 1, there is an Autism awareness campaign called Communitcation Shutdown, whereas people are encouraged to stay off Twitter and Facebook for the day in order to promote an awareness of the communication difficulties that Autistics face.

A person is supposed to donate in order to get the charity app. The app doesn't really do anything, other than post a little image on your picture to say you're participating. Whether or not you stay off Twitter and Facebook is entirely up to you.

And this is supposed to help simulate the communication difficulties that Autistic people face.

I'm sorry, but no. Just no.

Yes, I know Temple Grandin supports this campaign, and I appreciate their creative approach to this, but I don't think that this gives the NT population a complete experience on the communication issues we face.

Why? Because it relies on the assumption that everyone participating uses Twitter and Facebook to communicate. While I realize that these sites make communication easier, it is not the only way in which NTs can communicate online, and thus subvert the entire exercise of the campaign.

I was recently asked by a person on Twitter to participate, and I responded that there wasn't much of a point, since I am Autistic, and do not require to learn about difficulties that I myself face in communicating. I pointed out to this person that Twitter and Facebook are two of the sites that actually allow Autistics to communicate and connect with others in the community, so I will not be disappearing from the Internet, as it is my lifeline. I also remarked that this is a flawed simulation, since a non-Autistic person still have the capability to text on their phones, and speak verbally, and so would not be totally comprehending the true reality of Autistic disability.

The question now becomes, what would be a better method for Communication Shutdown that would have the most impact for those involved?

Okay, for the NTs participating: do a total communication shutdown. Go all the way. Turn off your cell phones, log out of your instant messengers and email, unplug your home phone*, cover your mouth with a piece of cloth and don't say a word. Don't text. Don't type. Don't write. Don't speak.

If you can help it, turn off your Internet.

Completely and utterly disconnect yourself from any form of typical communication.

I understand that there will be some who can't resist at least signing in and watching feeds go by. For those, just watch.

As for my fellow Autistics, as the NTs disconnect and fall silent, let's speak.

Let us use this day to flood every social networking site we know with our accounts, our experiences, what it feels like to Autistic.

Every sensory pain, every communication frustration, every account of being bullied, every wondrous moment, every peaceful calm, every instant of understanding and joy.

Let them hear our voices and take back the Autism community.

Let us speak.

Let us tell you want it's like to be us.

And that, would be true Autism Awareness.

*except in the case of an emergency. Don't want you to risk your life, eh.

Autism, Apps, and Adults

2010-10-14T09:32:00.001-04:00

There's been quite a bit of news lately about how Apple's iPad can assist Autistic children. The stories I have heard are wonderful and hopeful, on how iPads and iPods could bring about a new era of portable supports, learning, and communicative devices, and independence. It has been pointed out that the portable devices, while not cheap, are inexpensive when compared to other specialized devices -- which are often too bulky to carry around and be applicable to various locations and situations.

With the development of specialized apps, a child, parent, teacher or caregiver can carry a small, slim device filled with programs to communicate, understand how to go places, be prompted on doing tasks, keep organized, learn social skills, filter sensory input, and regain calm from stress. For those with motor control problems, the large screen of the iPad offers more accessibility and opportunities for skill development, while still maintaining the portability and function of the iPod Touch. The added bonus of it being a “cool” item also opens a child up to social interaction and acceptance among peers.

It is, as many have stated, a miracle, or at least as near of a miracle one can get in terms of assistive technology.

This is all very good; there is just one problem. The stories centers on Autistic children, ignoring the potential that this technology has to impact the lives of Autistic adults as well.

Now, I understand why the Autism community is so focused on children; teach skills early enough in life and a child has a supposed better outcome later in life. However, I think that the Autism community in its devotion has forgotten about the Autistic adults, the present ones who have grown up with and without the diagnosis, supports, and services that are available now; the adults our children will become.

I know of many Autistic adults who benefit from the use of apps, myself included.

Even before I discovered the iPod Touch and iPads, I’ve known how little devices helped me out. When I was a child, I used a Walkman on the long rides to my grandparents to ease motion sickness. As a teen, I realized I could use my Discman to block out unwanted sounds when I studied and provided me with my own “soundtrack” to keep me going.

In 2005, I received my first MP3 player, a 30GB iPod Video, which gradually started to go everywhere with me. I took it with me on my walk to class, as a way to keep from getting bored as a way to keep up a pace that got me to class on time. I listened to it while sitting in noisy lounges, food courts, and cafeterias to buffer out the wall of potential overload as I reviewed course materials and waited for my next class. I brought it with me to study, as up-beat music kept me engaged and energetic.

When I returned home from school, my iPod started to come with me during my family’s walks and long trips, to provide some sensory relief so I was able to interact even when strained to the max. As I settled into my new place in the city, I listened to it on the bus, and was able to go grocery shopping, fill out necessary forms, and go pay my rent because I had a musical buffer between me and the overwhelming world of intense sound. By occupying one sense, my other often-beaten senses could tolerate more, and I was able to do more.

For five years, I named my iPod my Personal Sanity Device and took it everywhere. Gradually, I began to pray over it that during this next trip, the battery wouldn’t mysteriously die, or the hard drive suddenly shut down. For five years, it hung on past its warrantee and expected battery life. Until this September.

This September, I looked at my long-lasting friend, and gave a deep sigh as it erased all of its memory on me for the last time. It was time, I decided, to get a new iPod.

And as it happened, I had a pretty good idea of what would be my next iPod, my new Personal Sanity Device, based on the reviews, news articles and feedback from people online.

As I’ve said before, the iPad, iPod, and other pocket computers, have great potential for assisting both autistic children and adults. The question is do we need to develop apps specifically for autistic adults, or can apps used by autistic children and non-autistic adults be used?

In some ways, this is what my blog the Autistic Adult App Project is trying to find out, whether already existing apps are suitable to meet the needs of autistic adults, and how affordable they are for people with a variety of incomes.

While I think that some existing apps are suitable and have their uses, I strongly suspect that there is a need for adult-specific apps, as adults have different needs than children. This isn’t to say that some apps designed for children can’t be used for adults, but rather that some of the subject material within those apps may not be appropriate for an adult, and may not even cover adult needs.

The way I see it, autistic adults do not need the same amount of social skills training and academic related apps as children. However, for those that require and want to develop more skills or work on specific areas of behaviour, the apps should be suitable to the maturity of the adult and allow them either work with a support worker, or self-direct, as per their desires.

For the most part though, I see apps not as a teaching tool, but as a supportive device for managing functional skills, organizing, dealing with stress, and as a means of communication. Sensory overload can be managed by a range of different apps, not to mention by an iPod’s original function: playing music. Text-to-speech and PECS-based apps may need some customizing for adult needs, but are capable of providing alternative communication for non-verbal autistics, or even for those moments of stress where verbal skills are temporarily lost.

Other organizational and productivity apps already exist, but can be used to become more independent in remembering appointments, when to take medications, reminders to bathe, eat, and other daily tasks. As there are versions designed for adults in mind, these may not require as much customization for autistic adults and the main hurdle is learning to use the apps efficiently.

Such apps may not completely eliminate the need for a support worker, but they open up new possibilities in terms of independence, and could that lessen how much a person needs a support worker. This is, of course, the main point of educating and helping children develop from an early age, so that they can be more independent and lead happy and engaged lives as a part of the community, to the best of their abilities.

It is my firm belief that it is possible to support autistic adults with a wide range of abilities and needs in this manner, and that the autism community should be assisting in the development of apps to be used on a long term basis. As we know, a person does not stop being autistic at adulthood, and often requires lifelong accommodations and supports. So when we look towards the future of current children, we should also be regarding the futures of current autistic adults, as a part of our community.

(This article was originally written and posted on the Thinking Person's Guide to Autism, and is reposted here with permission.
Also, while the article addresses Apple products specifically, it can be applied to any of the pocket-computer type phones and tablets in development and on the market with apps from other companies.)

For the Health of It - Dalhousie and the Provincial Autism Centre

2010-10-07T09:22:00.001-04:00

So I received this email from my sister-in-law, who is in New Brunswick working on her PhD. The Medical school she's at is a partnership between the University of New Brunswick and Dalhousie University, and every year, the Health Professions run a fundraising event for a different charity. This year, they're raising funds for the Provincial Autism Centre, and my sister-in-law thought I would be interested.

Here's the letter:

To whom it may concern:
Each year Dalhousie’s Health Professions put together a performance called For the Health of It with the purpose of raising funds for a chosen organization. During this performance each health profession prepares a 12 minute skit with acting, song and dance to tell the story of their role in healthcare. Funds for this event are raised through ticket sales, a silent auction the night of the performance, selling advertisement space in the program, and monetary donations. This year’s performance will be taking place on November 27^th, 2010 at the Rebecca Cohen theatre.
This year the annual fundraiser has chosen to dedicate its proceeds to the Provincial Autism Centre is a non-profit organization dedicated to supporting individuals with autism, their families, educators, healthcare professionals and researchers throughout Nova Scotia.
The Provincial Autism Centre works on a day-to-day basis to provide information materials, research assistance, a variety of program opportunities and a friendly atmosphere to support our members in their desire to understand autism, and assistance to individuals with autism so that they can live full and rich lives.
Their latest project has been to provide a day camp this past summer for children with autism. Providing 1:1 camper-counsellor ratio. It worked to support children with higher support needs to enjoy a well-rounded summer camp experience - an experience that they would not be able to access at any other camp.
Today we are asking for donations to raise money for this great cause. There are a number of ways in which you can help to make this year’s fundraiser a huge success.
These include:
· Donating goods or services for our silent auction.
· Purchasing advertisement space in our program (Information regarding the purchase space is provided on an additional form.)
· Donating funds of any denomination.
Thank you in advance for your kind support!

Of course, I'd like to be able to give you more information about the Provincial Autism Centre. Included in the materials my sister-in-law sent me was a letter that includes a list of some of the programs the Centre provides and runs:

Operate the Provincial Autism Centre Library – the largest specialized resource library related to ASD in the Atlantic Provinces
Deliver the vibrant Autism Arts program in partnership with the Art Gallery of Nova Scotia
Provide Autism 101 information sessions upon request to community and professional groups
Host teen and adult social groups for people with ASD
Deliver Autism Works, a supported employment program to help young people on the Autism Spectrum to gain work experience which supports informed career choices later in life, and to support career success for teens and adults with ASD.
Facilitate yoga classes for adults with ASD
Publish Autistics Aloud – a newsletter written by and for people on the Autistic Spectrum
Facilitate gatherings that bring different professional groups and communities together
Host the Autistic Self-Advocacy Council-Nova Scotia – a group by and for adults on the Autism Spectrum with a mandate to provide access to good information about autism-related issues, educational opportunities and the chance to develop effective self-advocacy skills
Beginning in 2010, operate a summer camp to deliver a safe and rewarding experience to children with ASD

All of these seem, well, pretty nifty to me, so if you're in the Nova Scotia area, I highly suggest attending the performance on November 27th.

Adults Count Autism Survey

2010-10-05T12:22:00.000-04:00

Not long ago, I heard about a survey being done by the Redpath Centre on the needs of Autistic Adults. Looking at the website, I see that the purpose of the survey is to gather materials in order to advocate for better services. Curious and always willing to help out, I emailed them, and received this reply:

Thanks for your interest in the Adults Count! Survey which is being led by The Redpath Centre. We wanted to bring you up-to-date on the project.

The survey will launch later this month and will be available for completion until spring 2011. All surveys can be completed on-line unless you request a paper version. The information gathered will be used to understand the needs of adults living with Autism Spectrum Disorders in Ontario. It will take about 30 minutes to complete. There are three versions of the survey depending on who is completing it. It can be completed by:

(1) An individual 16 years old or older who has been diagnosed with an Autism Spectrum Disorder (i.e., “Autism”, “Autism Spectrum Disorder”, “High-Functioning Autism”, “High-functioning Pervasive Developmental Disorder”, “Pervasive Developmental Disorder, Not Otherwise Specified (NOS)” or “Asperger Disorder/Syndrome”) by a professional; OR

(2) A family member (e.g., sibling, parent) who is knowledgeable about the needs of a specific individual, 16 years old or older, diagnosed with an Autism Spectrum Disorder; OR

(3) A professional (e.g., group home worker, Adult Protective Service Worker, therapist) who is knowledgeable about the needs of a specific individual, 16 years old or older, diagnosed with an Autism Spectrum Disorder.
If you have not notified us already, please let us know what version you would like to complete.
We hope to have a large number of people complete the survey to ensure the results are as comprehensive as possible, so please forward this email to individuals who may be interested. They can express their interest by emailing us at: adult.survey@redpathcentre.ca.
Thanks again for your interest in this important project. If you have any questions do not hesitate to contact us.

Given the admirable goal of the survey, and the mission of the centre, I decided to pass this along for anyone who might be interested.

Regarding Kate Winslet and the Golden Hat

2010-09-29T00:00:00.002-04:00

gee, that sounds like a movie or something.... anyways, I had this late night discussion on twitter the other night, and found that I was having trouble expressing myself in 140 characters. It probably did not help that I think the person whom I was conversing with may have been mistaking the topic of some of the other some-what related conversations, with the topic we were discussing. So I made this post on tumblr, to try and clear things up, and decided to share it here.

Explaining it a bit for all the folks on twitter
Having a bit of an interesting conversation on twitter that’s getting hard to do with only 140 characters. So I thought I’d do a break down of my reaction to Kate Winslet’s Golden Hat Foundation.

1) I am a touch jealous, because here is someone seemingly effortlessly set up a foundation to do just the good that many of us in the autism community have been struggling to do. Just a touch. Enough that I need to admit it, but not enough to blind me from the fact that yes, this woman has the connections and resources to make it happen.

2) A bit pissed off at the traces of martyr-parent of autistic child that I’m seeing in the mass media. This is compounded into RAGE over the fact that I have been discussing the rather disgusting fundraising depictions of autism that some orgs use, and ways to protest and ways to describe the depths of my feelings about it.

3) a bit worried. Oh yes, she has the potential to do fabulous things, and maybe the Autism Women’s Network can get in contact with her and we can do partnership things and get supports for under-diagnosed and under-supported autistic women and this will be AWESOMENESS. and I really really really really really really really really really really hope that this is the case. But I gotta keep myself grounded; there is the possibility, however far-fetched, that she might turn down the woo-trail and make more work for us self-advocates. So far, it looks like this isn’t the case, but the foundation has just begun, and sometimes weird stuff happens.

So no, I haven’t actually JUDGED Winslet yet (although I absolutely hated Titanic, but that’s not exactly her fault), although I have started picking through all the language on the website and I have faulted the media for its child-focused approach to autism. There are some pieces that are picking up the slack and including autistic adults, but we still have a long road to go.

Also, the fact that the only faults I can find on the site is that she lists Autism Speaks as a resource. But she also gains points by listing some very good research on autistic intelligence (done in Canada too, yay Canada!).

So as things go, nothing’s set yet, and I’m just waiting to see, and sprouting out my opinions online.

There you go, my opinion on the matter, so far. And of course, since it is an opinion, I have the right to change my mind at a later date. I expect that I'll be letting everyone know if I do.

2010-09-28T12:00:00.000-04:00

I just came across this and wanted to share, from Laura Brydges on Facebook:

Hello! Hidden Disability (on Facebook) has just launched a survey that asks some very important questions about disability. It is a secure and confidential English-language survey that will give adults everywhere their chance to share their opinions on some new disability issues. Just click on the secure web link below... and you will be taken to survey directly.

The survey is the result of advocacy efforts of two women who both have disabilities. They have funded this research through garage sales, and are relying on word-of-mouth for this survey to reach as many people world-wide as possible. So please forward this message onto all of your contacts, friends and family, and ask them to take part too.

The survey should only take 15 to 20 minutes to do. The link is http://www.surveymethods.com/EndUser.aspx?DBFF9389DB918E89DB

Please take part, and remember to forward this message onto everyone you know. Thanks!

Versatile Blogger Award

2010-09-27T18:33:00.001-04:00

Julie of Julie Jabbers recently received the Versatile Blogger Award, and passed it onto seven bloggers, including Big Daddy Autism. He, in turn, passed it on to Kathleen at AutismHerd. And then she has passed it onto me!!! Specifically, this blog.

And as part of the rules, I have to share seven unknown things about myself and pass it along to seven more bloggers.

I am technically published in Scotland. In 2007, I studied at the Scottish Universities' International Summer School in Creative Writing, and wrote a non-fiction piece about my childhood that was published in their 2006-2007 publication.
I hate red-coloured candy. Not only does it not taste good, but I get migraine headaches from them too.
I dislike initiating phone calls, especially to strangers. I prefer to call places after hours and leave a message on the message machine.
I like dressing up and can even imagine writing zombie and scary movies, but I can't watch them.
I am either the best or worse procrastinator you'll ever meet. I can procrastinate at procrastinating at procrastinating to procrastinate.
When watching a TV/anime series, I will not finish it at night. Because I get depressed that the series is over in my head. I will actually put off finishing a series because I don't want it to end in my head.
I have, on occasion, out-geeked my geeky boyfriend. With references to stuff I haven't even watched or played.
EXTRA!!!! I like to hug grumpy cats when they're trying to sleep. (yes, it is my fault if I get bit or scratched)

Really? Seven bloggers? Do I really have to? Sigh, okay, let's see....

Ta-Da!!! I found seven bloggers.

Now the question is whether or not they notice......

:D

A Comment Made on Daybreak

2010-09-26T01:58:00.000-04:00

I made this comment on Daybreak Autism blog:

I just wanted to give you my input, as an autistic person who has heard a lot about ABA, and some of the long-term effects of ABA.

Your goals should not be to render a child to be indistinguishable from his/her peers. This is impossible, as there is no set mold for human beings.

You also should not be aiming to make a child automatically obedient, as this may damage the long-term ability to make decisions for his/her self and be able to avoid potentially abusive situations.

You goal should be to help people in the community, the family and the child to understand the strengths and weaknesses of the child, and help the child to develop skills to overcome disabilities and develop life skills in order to become as independent as possible. The goal is like being a parent, to raise a child to, ultimately, not need you anymore.

The difference is that there are various degrees of independence, and some have different potentials, but what really matters is being able to live freely, interacting as one wishes, and living happily.

this is my opinion as an autistic.

Profiling Autistic Women

2010-09-10T12:00:00.001-04:00

Last month, I wrote about how the Autism Women's Network is participating in the Pepsi Refresh Project in order to get the $50K grant. This grant goes towards hosting workshops across the United States for autistic females to be able to access accommodations and supports in their communities. The money also goes towards legal fees to secure the AWN's non-profit status, as well as site maintenance.

Sadly, the Autism Women's Network was unable to get into the top 10 positions needed to be awarded the grant. However, we were able to make the top 100 and carry over into this month.

As a result, we have decided to help promote our cause this month by profiling autistic females. Each day, strong, courageous, creative and unique females with Autism tell their stories and share with us their personal experiences and perspectives of themselves and about Autism.

Please join us as we discover what it's like to be female and autistic.

(Discloser: Corina Becker is Director of Networking and on the Board of Directors for the Autism Women's Network)
.

The Perspectives of Luck and Autism

2010-09-09T21:25:00.000-04:00

In 2005, during the opening show of an art gallery for autistic artists that I coordinated, a reporter and photographer for the local newspaper interviewed me as one of the artists. He asked me "Do you consider yourself lucky?" At the time, I stumbled a bit to answer his question. My answer then really did not encompass my entire thoughts about his question.

The answer to that question really depends on what does one mean by "lucky" and from which perspective?

After all, by sheer chance I was born in a country rich with health care, education and religious freedom, to a middle-class family that has been more or less stable, with access to many diverse lifestyle opportunities and human rights. I also live in a time and place where women has rights, and gay marriage is legal. By those facts alone, I'd have to say I'm pretty lucky, considering the situations in other areas of the globe.

Of course, the reporter probably meant in terms of being autistic. Well then, that's also complicated, and any simple answer possibly trivializes the struggles of other autistic individuals, as well as their accomplishments.

However, maybe it's easier to answer if I break it down into different perspectives and possible outcomes.

Yes, I have the benefit of having a fairly-supportive family that not only has a good understanding of autism and disabilities, but is willing to do what they can to help me out. Even when our ideas of help differs from time to time.

No, I do not live in a location where autism and disabilities are seen as being demonic possession and I would either be outright killed, abandoned, or undergo extreme exorcism rituals to drive the demon out of me.

Yes, I do not live in an age where anyone considered disabled or abnormal are automatically considered undesirables and are locked away to hide family shame, either in the privacy of homes or institutions where patients were subject to inhumane abuses.

No, I did not receive an early diagnosis.

No, I did not receive any early interventions or therapies.

Yes, I have excellent communication skills and am functional enough to have slipped under the radar, delaying a diagnosis until age 17.

Yes, I did receive some speech therapy as a child, and some anxiety therapy as a teen.

No, I do not currently receive all the supports I require, possibly due to a lack of early diagnosis getting me into the system, or due to being less noticeably disabled.

Yes, as a child, I was bullied, struggled through a lack of accommodations, understanding and support from teachers, and suffered from a devastating amount of guilt, mental pain, low self-esteem, depression and anxiety.

No, I was not put in an institution and did not have to survive the potential dehumanization and trauma that some institutions have inflicted on patients.

I can continue on, but I think that I've made my point.

Am I lucky? In some ways, I'm not sure. I am lucky to have escaped some of suffering that being diagnosed can cause, and in some terms, I'm not so lucky because I've slipped through the cracks. I don't know how much this will effect my life overall, any way that I can predict the future.

So, in the end, it becomes a manner of perspective, as well as one's values and goals. Is it to be considered normal by the rest of society, to fit in? To have a successful job? Or is it to find the way in which you can best be happy?

.

DNA Testing and the Future of Autism

2010-09-06T14:00:00.000-04:00

I was going to post this a lot sooner. Like, early June. However, I got caught up in three of my poems being accepted into the Perspectives anthology, and painting artwork. So now I finish this.

I have recently become aware of several news articles concerning new findings on autism genetics on this study just released. The Globe and Mail article, while short, does address a few key points.

The first is that they have not found specific genes for autism, but rather they speculate that they have found that out of their 996 ASD individuals had a higher rate of copy number variants. However, the genes and segments of DNA affected was different for each individual, and as study co-author Peter Szatmari says they have found "not a cause... but a profile of genes, a pattern of susceptibility".

Second to point out is that the rate of this pattern was found in 10% of their case studies, meaning that they might be able to predict autism in 10% of the autistic population, if the raw data is correct. However, current data is still unclear as to apply this to diagnostic methods, so they caution against any marketing schemes out there.

Both the study's scientists and the articles' author addresses the potential fear that current prenatal diagnostic tests could be used for family planning and abortion, a topic which I'm thankful that they covered. They also stressed that the genetic testing is not to eliminate autism, but to provide earlier intervention and supports.

Personally, I'm not entirely sure that developing a prenatal test is such a good idea, even assuming that they are able to predict autism in more than 10% of the autism population. Of course, I'm not sure the details involved in a prenatal test, but it seems to me that it would be more cost-efficient not to have a prenatal test and have a diagnostic test if a child is suspected of being autistic.

I mean, think about it, with the potential fears of abortion aside, is it really feasible to prenatal test every child? A bit more reasonable is to test in families with a family history of autism, or even to test if a child is showing autistic characteristics.

There is a strong emphasis on early "treatments", "interventions", or even just putting supports and accommodations in place. However, I think that the emphasis has gotten too strong. While certainly a child may do better the earlier diagnosed, it is not a clear-cut prognosis. It is not the end of a child's future if a child is diagnosed at age 3, and earlier diagnosis does not mean that a child will do better. It depends on whether a child has the supports she needs as she grows and develops on her own individual development path, and the guidance of her caregivers.

So what I'm trying to say is that I'm not against early testing. I just would like to caution about how early testing is used and what it means for a child. And of course, before filling a child's day full with skill-building, allow a kid to be a kid.

The Perspectives Anthology

2010-09-02T11:52:00.000-04:00

I'm pleased to announce that the Perspectives Anthology: Poetry Concerning Autism and Other Disabilities is now available through Lulu.com. The anthology is part of the Bards Initiative, in partnership with the Local Gems Press, which has this to say about the book:

With poetry from over 50 poets, the Perspectives Anthology through the art of poetry, conveys different points of view or perspectives concerning the autism spectrum and other neurological, psychological, social, and communicative disabilities. The poems in this volume are from those with disabilities, by those with disabilities, about those with disabilities, as well as from the point of views of family and friends of those affected. Perspectives hopes that its poetry will convey not only understanding, but unity, and a sense that despite different perspectives and different ways of living life, we are all human. (source)

Of course, while I very pleased with the project and anthology, I do have to disclose my own other interests in promoting it: I do have three poems in the anthology, looking at expressing the emotions of being autistic and disabled in the greater community. I do not, however, receive any compensation for any profits made from the book.

I submitted my work to the anthology because I agree with the mission of the project and felt that I could contribute my voice through my poetry. From the reviews coming in about the anthology, it seems that we have accomplished our goal in creating a book illustrating the perspectives of people in the autism community, from autistics to parents and caregivers, in how we truly feel about ourselves and our place within the community.

Now we just need to spread our words to the world, and you can help by ordering a copy yourself. Maybe after you've read it, you can donate it to a local library so that others can read it as well.

Last Day to Vote, the Big Push!!

2010-08-31T15:06:00.000-04:00

from the email sent out by AWN
I was notified only moments ago that approximately 150 contestants in the Pepsi Refresh Contest have banned together & decided to make a last minute run for a spot as a finalist in the Top 100 so they can be carried over to next month's Pepsi Grant Contest. This means that 150 people have formed an alliance ...to get into the Top 100 and boot Autism Women's Network along with other Top 100 contestants OUT!!!

Please VOTE now if you haven't cast your daily vote today!! This contest is not over until midnight!!

I am asking that all of our supporters tweet, facebook and network everywhere throughout the afternoon & tonight - requesting our friends, and followers to cast their final August VOTE for us now. If not, AWN can very easily find ourselves out of the TOP 100 by midnight. We already dropped to #67 in the past 30 minutes!

http://www.refresheverything.com/awn

(disclaimer: Corina is Director of Networking for the Autism Women's Network)

Puzzle-less Autism Awareness Ribbons

2010-08-28T22:51:00.001-04:00

For the longest time, I've been bothered about the autism awareness ribbons and other products displaying puzzle pieces. As a lot of autistics say when we object to it, we are not puzzle, we are people. So, since I've been aware of why it is offensive, I've been avoiding using it for any autism-related images.

Except my Anti-puzzle graphics for protesting Autism Speaks and other organizations.

However, I wanted an autism awareness ribbon that anti-puzzle autistics and other community members could display and use. So I made one, using the concept of my Neurodiversity infinity mobius and the spectrum part of Autism Spectrum.

Actually, I made two, and I've uploaded them so that people may use them freely. Also, I've made some shirts, car stickers and other products using the design, available on my zazzle store. (all proceeds goes towards my tuition fund; I'm applying to the Disability Studies program at Ryerson University, and it kinda costs a lot for someone on social assistance). The textless are below.

Lauren's Hope Review

2010-08-11T02:14:00.000-04:00

For quite a while, I had been wanting to get a medical ID bracelet. An Autism card is good for events where, having trouble communicating, a person can slip out a card and hand it out. For other situations, when I'm possibly unconscious, I want something on me all the time that's noticeable to paramedics. Especially when I consider the medical issues I have and medications I'm on.

I've looked at medical ID bracelet companies, including the ones with the yearly subscription so that you practically have your medical history a phone call away. I've looked at some rather fancy bracelets, some completely plain and utilitarian bracelets, and they were all either too much money or not what I wanted to wear on my wrist every single day.

But then I came across Lauren's Hope and was genuinely surprised. The bracelets are a bit expensive, especially for someone with limited funds, but are elegant and beautiful. They are designed so that you only need one tag that you can remove and use with many different bands. Yes, space is limited on the tag, and you'd have to replace it every time that your medications get changed, but it's a lot cheaper than subscribing to a medic-alert type service.

I love my Lauren's Hope medical ID bracelet, and I hardly ever take it off. So I highly recommend it; at least take a look, you might find something that catches your eye!

.

Pepsi Refresh and The Larger Difference

2010-08-02T00:18:00.002-04:00

It sometimes takes small steps in order to make a larger difference in the world. Small events, such as a stone falling into water, can create larger reactions that ripple outward to have a larger effect, either in the community, or even the entire world. Thus, we are never able to completely disregard even the smallest action.

In this case, I think that this is a recognizable starting point for a greater change. What am I talking about? Well, Pepsi Co is engaged in a wide-scale promotional campaign called Pepsi Refresh Project, that is this humongous contest to do two things: one, to brainstorm ideas to aid the Gulf Coast oil spill, and two, to provide various grants to the top ten voted individual, businesses and non-profit organizations, per category.

Among the contenders this month, the Autism Women's Network takes its first greater steps towards making a larger impact and being recognized as a non-profit organization. As part of its mission to provide support to previously under served autistic females, AWN is competing with 1234 other competitors for a $50,000 grant. With the grant, the AWN plans to run Project FAIM (Female Autistic Insight Mentoring) workshops, pay for legal fees to gain non-profit status, and pay for maintenance costs for the website and online supports.

Most of the grant will be to run Project FAIM, which includes costs for materials, transportation, and rent space. The workshops will be held in five locations across the US, and will focus on qualities that appear to be specific to autistic females. They will cover topics such as peer supports, relationships, vulnerabilities and successful communications, and will include active supports and information for autistics, parents and educators. At each location, renown autistic women will be on hand to provide insight and mentoring, making sure that each person will gain supports available.

This is one step towards a bigger change in how autistic females are supported and served in our communities and society. Recognized now as one of the most under supported population in the autism community, there needs to be a change in how we think about autism, especially in how it autism is understood and recognized. As part of its long-term goals, the Autism Women's Network seeks to make these changes, and so, in my opinion, this is a worthwhile cause to support.

So if you please, vote with me daily to get the AWN in the top ten of its category.

(Disclosure: Corina Becker serves on the board of the Autism Women's Network)

What I Want People To Know

2010-07-14T01:38:00.003-04:00

I wrote this for The Thinking Person's Guide to Autism, where it was originally published on June 30th 2010. With their permission, I have reposted it here.

In my time browsing the online community, I often get asked about my story, what it’s like to be a late-diagnosed autistic and what I want people to know. This is rather odd, because I’m not in the habit of showing off my scars, but there are some things that I think that I can talk about.

I want to be very honest with you. I am an adult living on social assistance, in a shared accommodation run by a non-profit housing organization. Despite being highly educated, I find it difficult to find and maintain a job on my own, and I’m not even sure that I ever will. I struggle to survive with few to no supports, mostly my family and the little that some organizations have been able to provide. It is, at times, very and extremely hard. There is a lot to remember, and each minute, each second, costs me. It costs me strength and energy, to maintain social skills, to remember how to do things, process information and formulate answers. It takes a lot of work, as I’m sure most parents of autistic people can understand.

I am an autistic adult who was diagnosed with Asperger Syndrome when I was 17, in 2002. I wish I had known sooner, and that I knew as a child what I know now.

Maybe I wouldn’t have felt like a defective monster, or that I was too lazy and just needed to work harder for most of my life. Maybe it would have shielded me from the taunts of bullies, and helped to soothe the tears I cried into my pillow for nights on end. Maybe it would have helped me and the other children to better understand, so that maybe I wouldn’t be bearing the scars of social blunders. Maybe it would have mended my mother’s broken heart as she watched me desperately calling up every girl in my class, trying to get someone to play with me for a weekend a month away. Maybe my teachers wouldn’t have been so confused, and helped me more than the little ways they snuck into the classroom. Maybe I would have gotten better supports sooner, and would be more comfortable with accommodations, and more willing to ask for help when I’m in trouble. Maybe my parents would have understood me better, and would have been better prepared to help when I started coming home with meltdowns and severe panic attacks every day.

I could go on with all the "maybes" and "what ifs." But maybe just knowing, just having a diagnosis, would have made all the difference in my life. Or maybe it wouldn’t have. I can’t say for certain, the same way I cannot predict the future or outcome for any child, autistic or not.

What I do know is this; I do not want a single child to slip through the cracks and have to suffer being unsupported, through school and throughout life. I do not want them to suffer even a fraction of the damaged self-esteem, heart-broken pain, overwhelming confusion, exhaustion and self-loathing that I clawed through.

Once, I went to South Africa for a course, and met with anti-apartheid activists. To make a change, they told us, take up a cause that is personal. This is about as personal as I can get, that I share my experiences and advice from those experiences, so that others may learn. And so, I go out and try to find parents and caregivers who would welcome what I have to say, in order to make a change. Change, for a better future, not just for the next generation, and the present generation of autistic children, but for the entire autistic population including autistic adults.

I do not tell my story too often. It is very painful to relive it, and I am thankful that I can focus on using my experiences to think of positive applications to my knowledge.

I want you to understand, that from my point of view, I did not suffer from autism. That is, autism does not cause me pain. It creates struggles and challenges, yes, that can be disabling, but the pain and suffering that I went through happened because of two things: being undiagnosed and not having the knowledge for supports and accommodations.

In other words, I struggled because nobody knew exactly what I was struggling with, and because I did not have the words to describe my difficulties. For me, the rising autism rates represents a rising rate in awareness and knowledge and a hope that less and less children will be mis-, under- and un-diagnosed, until there is no child that slips through the cracks. With that hope, there is a chance to make a difference, to ensure that each child gets exactly what he or she needs and requires in order to succeed.

To me, each child is a unique person with unique strengths, weaknesses and needs. This is all children, and all people. We all grow up with different cultural backgrounds, with different parents and experiences, and become unique people. At the same time, one autistic individual will require unique supports, just as she or he has unique abilities.

I may not be able to speak on the behalf of the entire autistic population in terms of my beliefs and experiences, but I do my best to apply what I know to each situation I come across on the internet, to see whether I can be of any assistance, even if it is just to provide encouragement. By doing so, I hope that my feedback can provide support to parents and caregivers, who in turn support my fellow autistics.

As I do this, I hope that people remember the following:

Have understanding. Sometimes just knowing that we are having a hard time is enough. Be aware of what affects each of us and understand that we try very hard with what we have, even when we have nothing left. Even if it does not lead to supports and accommodations, just knowing and giving us a little more room to work can make a big difference.
Have patience. A lot of us can take longer than others to develop and learn things. But autism is a developmental disorder, not a delay. So we do develop and grow, but we need your help, and you need to keep your cool. It may take a saint’s level of patience, but we need someone stable that we can depend on, a steady hand to help guide us when life gets more confusing.
Be caring. More than anything, we are still your children and students. We are still people capable of feeling, of loving and being hurt. Make sure to not just be a service provider or educator. Be our friends, our family. Learn what we love, and use that to speak to us that you care. Learn how we can show you that we also care for you, and to look for how we communicate to you.
Be positive. This is really hard to do sometimes, with all the challenges that arise, but it’s very important. We tend to pick up our attitudes from those we’re around, either being over-sensitive or under-sensitive, and so your attitude becomes ours. With all the difficulties we face together, it’s very easy to be discouraged. Do what you can to keep a positive perspective on things.
And finally, be good to yourself. You and I are only human. We aren’t perfect. It’s okay if you make mistakes. Forgive yourself, and take the time to take care of yourself. If you need to, seek respite and take a day off. We all need personal time to rest and recharge. So when you feel yourself worn thin, don’t be afraid to reach out for help and take a break.

I don’t believe I am alone when I say I don’t expect you to be superhuman. Raising children and taking care of others can be very hard, and sometimes it’s hard to find help. But there are people who can help, and we want to be there for you.

I hope that my words reach people and provide help in some way. While I strive to make big changes, I believe that all that I’ve gone through and all that I work for is worth it if I can make even just one small change. Maybe that small change can make all the difference.

~Corina

Response to The Thinking Mother

2010-07-01T02:57:00.000-04:00

Late May, I received an email from LizDitz about questions that a home-schooling mother had about Asperger Syndrome. Originally posted on June 2, 2010, this is my response to her questions.

Hi, I'm an autistic adult, diagnosed with Asperger's. My friend Liz Ditz passed this along to me, thinking that I could be of help. (I just got back from an anime convention, and am still recovering from the overload and sleep deprivation, so please excuse any mistakes/politely tell me if I'm not making sense).

You have a lot of questions, and I'll do my best to cover all of them.

I don't think that neurotypicals (NTs) should have a different set of standards. I don't think that the diagnosis of ASD, ADHD, or anything really, is an excuse for a child to not try to reach the same standards as others.
It's one thing if a person is proven to be unable to reach a standard or a task, but unless that happens, it's not an excuse not to try.

Now, these are kids that are being homeschooled. Like you, their parents have for one reason or another, decided that home schooling is a better place for their children. It might be that regular classrooms and even special ed classrooms are too much for them to handle.
That being said, if these kids are going to be in any way independent and interact with mainstream society, they need to know at least basic manners and social skills. If not, then they will be hampered by their lack of skills, and may even be set up to be institutionalize.

Then it's a matter of whether or not the kids really are autistic or not. It could be a case where some of the kids are rude. Then you deal with it as you would with any other child: talk to the parents.

If the child is autistic, there are reasons to disclose that information, and reasons not to disclose. The benefit of disclosure is that if the kid is trying really hard, and does mess up, there is more understanding and support. The potential downside is that there may be some discrimination, either from other children or from parents.

As you've pointed out, disclosing can lead to a lot of supports, even if it's just a general understanding that the child has trouble and doing what can be done to help.

As for the benefits for a child to have an official diagnosis of Asperger's, well, it depends where you are. In some areas, Asperger's is considered a disability and there are accommodations and supports. However, not every where. I live in Canada, and I know a few autistic people who were diagnosed as high-functioning Autism, instead of Asperger's (it's the same thing, really; the only difference seems to be less noticeable difficulties with verbal skills, although someone with AS can be dysfunction-ally verbal: can speak, but not very good at getting things across).
This is so that the person can access services that would otherwise be denied. In Canada, there is a legislative in the process of being passed that will get Asperger's to be qualified for services, which will bridge the gap between now and when the DSM-V comes out (Asperger's has been combined into Autism Spectrum Disorder).

I'm not entirely sure that there is no benefit to knowing whether a homeschooled child has Asperger's or not. If the child requires outside assistance at times, then yes, it is very helpful to know.

It would also probably be helpful to know about the learning method they are using for the child, so that you can also help out when you see the child is needing assistance, or can prompt the child with social skills, and maybe even offer to have the child over to give the parents and caregivers some respite. This would also have the added bonus of exposing the child to more social situations where he/she can practice and develop skills.

As for college and adulthood... well, I was diagnosed in my late teens. I would have benefited greatly from knowing much sooner that I am autistic, just even so that I know. It has taken me seven years of self-learning to understand how being autistic affects my ability to communicate, social skills, sensory issues and general hygiene. That's development that could've been done as a child. Also, knowing that I am autistic earlier could've helped me to navigate the minefield that is the teenage years, whereas I was in meltdown every day. With an early diagnosis, I figure that supports for me would have been put into place a lot sooner, so that I wasn't being overloaded. And that would have saved me a lot of mental grief alone, not to mention helped me with my academics.

When I was in university, I would give a little talk to the tutors and staff of the Special Needs Office, to explain how autism affects my studies and every part of my life.
So I would say that it is extremely useful to know, throughout the lifespan, because it affects everything.

I'm not entirely sure why a parent would deny the diagnosis. Maybe they still believe there is a stigma involved with ASD. But I know that high intelligence is not a pass that says the child does not has Asperger's. Take myself for example: I'm a brightly, fairly social female who as a child would talk to adults and even laughed at adult level jokes. And I'm most definitely on the spectrum.

.

To Be, or Not, Normal

2010-06-07T16:11:00.003-04:00

The following personal essay was written August 21, 2002 as part of a series called "From the Kore" that was published in my church's bulletin/newsletter-thing. I was 17, and not yet diagnosed with Asperger Syndrome, so I attributed a lot to my diagnosis of ADD and to personal preference.

At this time, I speak of peer pressure in context of doing drugs, smoking, and other public-service-announcement type of illegal activities that I considered Very Bad Things.

Also, I was not as experienced and knowledgeable as I am today, and so worded things differently than I would today. However, this is my past, and I have decided to repost the piece intact, without editing.

From the Kore no Nine: To be, or not, Normal

I’ve always noticed the differences in people. It’s like something of a past time for me to observe the ways that a person operates and acts to certain situations, especially to other people. I really don’t appreciate the remarks people make about each other, especially when they can’t understand that people are all different and seem to blame others for the way that they are. It’s rather a personally experience.

I don’t expect everyone to understand me, or relate to me, because I know that I’m different from typical girls my age. I find myself the social alien in my high school simply for the way I act, and apart from being lonely sometimes, I don’t mind. I’d never go shopping to buy a wardrobe that’s in style, because it’s a waste of time and money. I usually buy what’s available in my size. It’s just not me to go crazy about guys. I just believe that using all my time just so that I can fit in to a certain crowd is just not worth it. I refuse to be what society defines as ‘normal’, and that makes a lot of people unhappy.

I don’t like the way society defines normal. It makes people act a certain way, stunting their personal growth. To a teen, so much depends on who you are, that I think most teens see society’s normal as something to work for, and in doing so, taking the easy way out. They make themselves act this way and buy that, all so they can have the feeling that they belong, that this is who they are without having to really look at their selves. I think that if all teens looked at who they really are, they will find that there is no real definition for normal; it doesn’t exist. A Fruitopia ad asks ‘What if there is no normal?’ and I say, it doesn’t. At least, not in the way we think about it. I looked up normal in the dictionary, and it told me that normal is to conforming to an accepted standard, model or pattern. The Media, which influences society more than we admit, defines normal as going along with the crowd, being popular, pretty and fashionable. And media says that’s where self-esteem and self worth comes from. Well, it might be true for some people, but there’s an exception everywhere.

I take normal to be seen as two things, with regards to the dictionary definition. What’s first thought of is being a part of the pattern of society, to be average of society. Sometimes I see this getting distorted by corruption. A person that is different is rejected as normal because they don’t follow what everyone else is doing, or acting, or whatever. Society seems to reject them because they don’t need what everyone else needs to be him or herself, they don’t follow the standards, if you will. Standards that allow companies who control the media get rich because that’s what they’ve been taught to do, and that’s how they feel they will be successful in life. It’s a cycle that keeps going because it feeds on confused teenagers looking for their identity. What isn’t understood is that if people were all unique, then the definition of normal is completely obsolete if you follow society’s way. And I’ve noticed that society is hypocritical in itself. Lately I’ve seen ads that encourage people to be different, to be unique. But it’s an ad for a certain brand of clothing, for a certain store. So the message I’m getting is that it’s great to be different, but only if you’re wearing this kind of clothing from this store only and heaven help you if you don’t accessorize. And so on and so on.
To follow the crowd isn’t unique, it’s doing what everyone else is doing. Quoting a well-known question, I ask you this: if everyone considered normal were to all jump off a cliff to his or her deaths, would you follow?
Thought so. No, we would haul them off to the mental hospital. At least, I would.

I have a different definition of normal. To be normal is to follow a set pattern, regularly and faithfully. But here’s the difference. The pattern is different for everyone. What is normal for one person may be alien to another; what is good for one is not necessarily good for everyone. Take, for example, myself. I’m definitely not like most students in my high school. This is partly because I’m part of the population labelled Attention Deficit Disorder. Although it really sounds like something bad, it’s not. It’s just that A.D.D. people are good at making other’s lives interesting, to say the least, in both good and bad ways. But back to my point, one of the reasons I’m just an outsider is that I can’t take part in some activities that they can. I simply cannot take the time or effort to do what is considered normal. I look at what some people do, shake my head and walk away. I don’t follow that way of life. However, I do have my own ‘normal’ behaviour, which includes all the wacky weird things I do. If there’s food, I eat. If there’s a friend who needs a shoulder to cry on, I will jump into my car and drive across town to give that friend my shoulder. It’s sometimes taxing on my resources (and at times, grades), but its part of my behaviour. I know that my peers at high school look at my values and think them strange, but then, I think wasting money to see certain films really stupid.

I get in contact with a large variety of people, each one with their own values and patterns for normal. We may not see eye to eye on some issues, but we can get along. One of the problems, however, is labelling. Is it really right to make all these unique people try to become a certain way? Do we consider suppression of personal freedom right? To become an outside-defined type of normal? Isn’t there a word for that, like, peer pressure? Do we consider peer pressure right? I rest my case.

.

Call out to Autistic Families

2010-04-12T17:23:00.003-04:00

I recently got an email from Liz Ditz. Richard Everts of the Tommy Foundation is looking for families and individuals with "higher-functioning autism or aspergers, non-biomedical, or any variation along those lines" that are part of the neurodiversity community.

This is for a film called The United States of Autism, a documentary about autistic families. You can find more information here, and the application, which is due Wednesday.

Personally, I think that this is an excellent opportunity for our voices be heard and spread awareness. I can't participate, since I'm Canadian, so I'm hoping that many other members of the community be able to take part. Even though Autism Speaks, AutismOne and other question-ables are involved.

Also, I would like to quote a bit from the email forwarded to me from Richard Everts:

We recently started our new 3 year strategic initiative for The Tommy Foundation, as we are changing out focus to support the larger autism community. We have not altered our website to reflect this yet, so if you could please let individuals know that we are not ND averse or unsupportive of their views at this time.

I thank you for your help and look forward to speaking with you more in the future about the film.

So, go on and spread the news, and if you think you'd like to be apart of it, go right ahead!

.

Perspectives Anthology

2010-04-08T10:59:00.004-04:00

If you haven't heard, there is an anthology by the Long Island Examiner that is currently taking submissions. Their mission statement is

It is the goal of this anthology to convey, through the art of poetry, different perspectives concerning the autism spectrum and other neurological, psychological, social, and communicative disabilities. The poems can be from those with disabilities, by those with disabilities, about those with disabilities, or come from the point of views of family or friends of those as well. Perspectives hopes to use poetry to convey not only understanding, but unity, and a sense that despite different perspectives and different ways of living life, we are all human.

Currently, there is no deadline for submissions, and there is no limit as to the physical location of contributers. As long as the poems are in English and convey the spirit of the mission statement, anyone is able to submit up to 3 poems. On the website link above, there are more details about where to submit poems.

Of course, as a writer I have occasionally done a little poetry, and while it's not my strongest writing style, I did pull together a poem to submit.

Being Human

I’m reminded once again
why being human is a sin
with subtle language all confused
and sensory tolerance a short fuse
causing loss of anger control
and chances of inner peace half stole
wondering how I came to be
in a strange land with a stranger me

I’m not sure how to act
I’m sure that I’m lacking tact
I make the wrong movements
and I seem to be socially tense
taking things the wrong way
and enduring stares at odd words I say
unfunny jokes and really bad puns
wide open pain sky filling suns
lacking the basic of social graces
unable to look at people’s faces
who eat the bad food on their plates
along with those sounds I really hate

Thanking my fortune for sanity’s sake
the value of friendship and companions not fake
willing to listen, accept and understand
helping me with skills to find
changing the world, together to stand
not a society divided by disability
but a mosaic united

Instead of struggling, alone and confused
letting my faults, frustration take toll
now it is safe for me to muse
with allies that help and not control
and reminding me once again
why being human is not a sin

A Mocking Compassion

2010-03-30T00:01:00.001-04:00

It has come to the attention of many bloggers that a mother by the alias of Smockity Frocks has posted a blog entry whereas she mocks what appears to be an autistic girl, claiming that the girl is rude, impatient, and making mocking jokes about the girl's flapping. She has since removed the post for this, however, a copy of it remains on Google's cache.

I know that a couple of other bloggers have picked up on this story, and once again, Lizditz is compiling an excellent list of responses, from Storkdork, Kim Wombles, Terri Mauro, and other autism bloggers. However, I feel that I need to address this as well. As I posted on Kim Wombles' Countering AoA:

Smockity seems fixated on the fact that Grandma did not try to direct the girl's attention to books, backing up her assertion that the girl is being a spoiled brat because of this. She seems unable to understand that the highly-likely autistic girl was fixated on the computers, and would be unable to be distracted and even be upset by the interference.

In the comments for the post, I noticed that people remarked that it's possible that 1) the grandma is not the primary caregiver, and so is only following the guidelines the parents have set out to the best of her ability and 2) that this is a small step in a larger lesson in patience, and that interrupting the practical application of the lesson would hinder the girl's learning.

Personally, I think the girl has the lesson of patience down pat pretty well. Especially for a 4-5 year old.

I'm rather proud of the girl; she maintained appropriate behaviour. I don't care that Smockity thinks that she was being impatient; the girl was being very polite and not complaining about the wait (although, I suspect that her repeated patience comments were her version of "is it my turn yet?" hints).

Instead of making a tantrum, she politely tapped the other child on the shoulder, and did not get upset when refused. She maintained her coping stims, and waited in line. It's better manner than some NTs that I've seen.

Now that I have gotten my personal reaction to this out of the way, I wanted to examine this incident a little more.

April 2nd is World Autism Awareness Day, and despite the involvement of Autism Speaks, the SMART Foundation and the National Autism Association (the last two being supporters of the vaccine-causes-autism myth), I would like to contribute a little and make perhaps a few comments.

I think that Smockity gives us an excellent example of some of the mild challenges that autistic people face today, coming from the problem of ignorance. In Smockity's case, ignorance over autism caused her to be snarky and judgmental towards the grandmother and girl.

This response is a fairly common concern for many parents of autistic people that I have encountered, with an underlining fear that the response may escalate to the point where autistic people, seniors, adults, teens and children, will be excluded from society. Parents share autistic people's fears of a prevalent historical attitude where people with "abnormalities" and particular disabilities are warehoused in institutions and special "schools", where various abuses can occur.

Currently, the disability movements are working towards abolishing the abusive practices used on disabled people, from new laws regarding restraints and seclusion, to getting the public to pay close attention to abusive shock therapy and in impact of being institutionalized on mental health. Looking at past experiences, many of them their own, activists work towards creating a safe place for disabled and autistic people to live and be a part of society.

There is no doubt in my mind that these are huge achievements in disability rights, however, there are also other present day-to-day concerns. For those who fears of institutionalization and abusive treatments are not quite as large a reality, there is the common struggle to interact with a society that still is very ignorant and insensitive to autism and disabled persons, especially people with "invisible" disabilities.

As much progress has been made in the past years to eliminate negative stigma surrounding disabilities and autism, there are those who are still unaware as to what autism and disabilities actually mean. The incident with Smockity is an example, one incident of many where parents encounter an autistic person and have no understanding to the autistic's behaviour and mannerisms. To many parents that I have seen respond, Smockity's reaction reflects their fears of how others are perceiving their children. To many autistics that I have seen express their outrage, her reaction represents the callous treatment they experienced throughout their lives, and continue to face even now.

The negative attitudes and stigma presents real obstacles to autistic and disabled persons and their families, not just a struggle to socially interact. Imagine, if you will, how difficult it is to gain support services if service employees are ignorant of the ways in which autism and various disabilities manifest, the wide diversity of strengths and weaknesses, combined with the various degrees of "functionality", and the unique supports needed for each individual. Imagine social workers who have no concept of disability beyond the strictest definition. Imagine, when convinced of being disabled, of providers who treat you with contempt, scorn, or pity, making you give up your sense of respect in order to get what you need. Imagine, in all the ways Smockity's reaction, contempt and mockery of the little girl and her grandmother in the library could have been avoided.

For some of us, we don't have to imagine: we live it, and struggle ever day to educate our support workers, friends and community not only to understand, but also to put a human face to autism and disabilities. Not only for ourselves, but also for the children, so that they can live happier, more community included lives.

For understanding when we go out into the world, for respect and compassion without pity when we need services, and for acceptance that we can be a part of society and humanity.

This is why, for the month of April and for every day of every year, I work the best I can with my abilities to increase autism awareness.

.

A Block to Autistic Self-Advocacy

2010-03-29T09:58:00.011-04:00

If you haven't already heard, a delay has happened in the confirmation of autistic self-advocate Ari Ne'eman's nomination to the National Council on Disability, the youngest nominee in US history. As Ari has demonstrated, age is not a barrier to experience.

Ari is most known for founding the Autistic Self Advocacy Network, a non-profit organization run by and for autistic people to provide support and services to autistic individuals while working to change public views of autism through community education. Embracing the principles of the cross-disability community, ASAN promotes inclusive education, community living, and the inclusion of autistic individuals in the national conversations and decision making that concerns autistic people. Currently, ASAN has chapters in several states in the US, as well as in Australia and Canada, and is engaged in initiatives on both state and federal levels.

While Ari certainly does not work alone as founding President of ASAN, he also has his own personal contributions and outstanding achievements. He has served on the New Jersey Special Education Review Commission, was appointed by Governor Jon Corzine to serve as Vice Chair of the New Jersey Adults with Autism Task Force, was the Policy Workgroup Leader for the Youth Advisory Council to the National Council on Disability, is a board member of TASH and the Autism National Committee, and has served as the first Patricia Morrissey Disability Policy Fellow at the Institute for Educational Leadership. During his time serving on the New Jersey Special Education Review Commission, he wrote a minority report on aversives, restraint and seclusion.

He has been recognized for his work, having received the HSC Foundation "Advocates in Disability" Award and the United Cerebral Palsy's "Expanding Horizons" Award.

Recently, Ari has been involved in the passing of the Preventing Harmful Restraint and Seclusion in Schools Act (H.R. 4247) and on the investigation of the abusive practices of the Judge Rotenberg Center. He has expressed personal interest in the case of Zakh Price, and has been involved with the protests and cross-disability outcry of Autism Speaks derogatory portrayal of autistic people.

On top of it all, Ari is a senior student of Political Science at the University of Maryland, Baltimore County, where he is finishing up his studies for May 2010.

In comparison to the other nominees that were confirmed, Ari's involvement in the autistic and cross-disability fields, plus his own experiences in a secluded special needs education program and post-secondary education makes him an excellent addition to the National Council on Disability. His own achievements and mission statements are very similar to the goals of the NCD, "to promote policies, programs, practices, and procedures that guarantee equal opportunity for all individuals with disabilities, and that empower individuals with disabilities to achieve economic self-sufficiency, independent living, and inclusion and integration into all aspects of society."(NCD)

I am sure that I am not alone in the autistic and cross-disability community when I say that I am confident that the US Senate will not hesitate to maintain the purpose of the National Council on Disability, will not create barriers for all persons to have an active role in society and the government, and will participate in empowering autistic and disabled persons in being included in national discourse.

.

The Propsed DSM-V Changes: Is it a Step in the Right Direction?

2010-03-04T13:50:00.004-05:00

This was written by myself and Amy Caraballo for the Autism Women's Network. It is available on the AWN site here .

The Proposed DSM-V Changes: Is it a Step in the Right Direction?

Lately, the online communities have been talking about the recently released proposed revisions for the the Diagnostic and Statistical Manual of Mental Disorders, version 5 (DSM-V). The proposed revisions embody quite a few differences in the diagnostic criteria for disorders previously under the umbrella of Pervasive Development Disorder (PDD). Available online for comment, the two main concerns appear to be vague wording of the diagnostic criteria and whether or not Asperger Syndrome should remain as a separate diagnosis.

Diagnostic Criteria
Under the DSM-IV, each subcategory of the PDD spectrum was fairly specific in listing criteria for the diagnoses. However, despite that, many children who did not fit the subcategories of Autistic Disorder, Asperger's Disorder or Childhood Disintegrative Disorder were given the diagnosis of Pervasive Development Disorder - not otherwise specified (PDD-NOS). PDD-NOS has included many presentations of the disorder. Over time, the number of children receiving PDD-NOS has been increasing. It is not surprising that the DSM committee felt that something was amiss. "Not otherwise specified" is far from informative.

The proposed changes to the DSM-V include merging Autistic Disorder, Asperger Syndrome, Pervasive Development Disorder - not otherwise specified (PDD-NOS) and Childhood Disintegrative Disorder into the classification Autism Spectrum Disorder. Rett’s Disorder has been removed from the DSM and labeled a "medical disorder". While there are various opinions on the matter, many are extremely concerned over the vague diagnostic criteria in the proposed manual.

1. Clinically significant, persistent deficits in social communication and interactions, as manifest by all of the following:

a. Marked deficits in nonverbal and verbal communication used
for social interaction:

b. Lack of social reciprocity;

c. Failure to develop and maintain peer relationships appropriate to developmental level.

Much of the concern is over criteria one (see above), as many of the deficits cannot be measured in a clinical setting. As most clinicians would be unable to observe children in their natural environments, much of the information used to determinediagnosis would consist of speculation and interpretation by unqualified persons such as teachers and others who work with the child. This makes the diagnosis subjective and dependent on the knowledge of individual observers.

Section 1.a assumes that the average pediatrician has adequate speech and language training in order to determine deficits in a verbal child. While the non verbal children may be easy to identify under criteria a, those without obvious speech deficits may fall through the cracks without proper evaluations by speech and language pathologists.

Other concerns relate to the age in which some of the criteria is appropriate. For instance, section 1.b requires a lack of social reciprocity. Reciprocal social behavior refers to the extent to which a child engages in emotionally appropriate turn-taking social interaction with others. It is normal for very young children to engage in parallel play and thus typical children do not always engage in reciprocal play. Section 1.c indicates that the child must show deficits in peer relationships - something that is not always obvious in early childhood.

The manifestation of these difficulties may not be cut and dry. Often, like-minded children flock together. With the rate of Autism diagnoses rising some Autistic children may have developed peer relationships with others on the spectrum. Additionally, renowned specialist, Tony Attwood has found that girls have naturally higher verbal and social skills than boys which can often lead to missing the diagnosis under the old criteria1. Under the proposed criteria, these children would simply not qualify for diagnosis at all.

Since all three criteria are required to receive a diagnosis, it is easy to speculate that many children will not be diagnosed until well past early intervention years when or if they would show obvious deficits.

2. Restricted, repetitive patterns of behavior, interests, and activities, as manifested by at least TWO of the following:

a. Stereotyped motor or verbal behaviors, or unusual sensory
behaviors

b. Excessive adherence to routines and ritualized patterns of behavior

c. Restricted, fixated interests

The wording for criteria two (see above) is not only very vague, but insinuates that these behaviors are undesirable. This is directly in conflict with the current mentality of concentrating on strengths as well as weaknesses. The proposed changes return us tonegative stereotypes that define autism as a series of defects. Compounded by vague wording, criteria 2 fails to define what defines "stereotype", "unusual", "excessive" and "fixated". This lack of clarification allows those using the DSM-V for diagnosis, to rely on their own interpretation and definitions. As with criteria one, the diagnosis becomes subjective with what the diagnostician perceives as being usual, excessive and essentially typical behavior. Instead of clarifying, this criteria not only confounds the diagnosis, but is also contrary to defining autism as a widely diverse spectrum that has particular deficits as well as unique abilities.

3. Symptoms must be present in early childhood (but may not become fully manifest until social demands exceed limited capacities)

Criteria three (above) appears to confirm the fear that young spectrum children will go undiagnosed. Data has shown that early intervention is key to helping Autistic children with potential deficits. Additionally, failure to identify children at an early age could cause severe stress to children who need accommodations to function in mainstream society. It has been confirmed that the earlier accommodations and interventions are put in place, the better the outcome for the Autistic person. However, under the new DSM-V criteria, it is likely that children will go undiagnosed until they are school age and beyond. Children who previously may have been diagnosed Asperger's Disorder and PDD-NOS could easily slip through the diagnostic cracks.

Finally, a large concern is by some in the Asperger's adult population who were previously diagnosed under the DSM-IV. While many of these individuals continue to fit the Asperger's Disorder under DSM-IV, there is concern that as adults, they will be "undiagnosed" under the DSM-V since they now do not present with the new criteria requirements. This presents a very real question; how will the currently diagnosed population fair through this change?

Autism vs. Asperger's
For various reasons, some feel that Asperger's should remain separate. Some speak of pride of being "Aspies" (a term created by the adult population), finding a sense of superiority and self-esteem in the distinction. Along with this view, there are those that feel that Asperger's includes a difference in communication skills and ability to adapt than that of Autistic Disorder. The mindset is that these differences mean that those with Asperger's are not the same as others on the Autism spectrum. The hard working advocates who have toiled endlessly to have Asperger's recognized as a valid diagnosis, see this as a step backwards from what they have worked for, and perhaps, are feeling that they have struggled for nothing.

Inclusion Issues
Under the new DSM-V, there is also a concern that people currently diagnosed as Asperger's will be automatically slotted into specialized Autistic community, and special education programs where they will be segregated from their non-disabled peers. This is a tribute to the prevailing mindset that those with the Autistic Disorder diagnosis are somehow "more disabled" than those with Asperger's. Additionally, this mindset is testimony to the current problems inhibiting proper inclusive programs in our public schools and communities. It appears that society is still more inclined to let labels define the supports and accommodations rather than individual needs.

Currently, the only diagnostic difference between Autistic Disorder and Asperger's has been defined by verbal skills and more specifically, a child's ability to speak. Using this model a person diagnosed with Asperger's is no less Autistic than a person diagnosed with Autistic Disorder. However, under the Individuals with Disabilities Educational Act (IDEA) qualifying diagnostic criteria, this distinction has often excluded Asperger's as an Autistic Disorder. For some, this has prevented access to accommodations, support programs and services that they need to remain stable or reach their full level of independence, both in schools and in the community.

Currently, U.S. states have used Autism, Emotional Disturbance and Other Health Impairment as the qualifying diagnoses for those with Asperger's Syndrome, but not actually Asperger's. Additionally, IDEA has a behavioral qualification which states that a child who has "behavior that impedes his/her learning or the learning of others" also qualifies for IDEA protections. IDEA is supposed to be "needs" based and not strictly applicable to diagnostic labels. It speaks more about the state of accommodations and specially designed instruction than the actual definition of Autism.

One solution to the problem of accommodations is the changing IDEA and other educational criteria by removing static qualifying labels (such as Autism, Emotional Disturbance, etc). Because IDEA does not use the DSM, it is unclear how the proposed DSM-V changes will affect a students ability to receive special education services.

Severity Levels
One unknown is what the severity levels of Autism Spectrum Disorder will look like in the DSM-V. Previously it was thought that Asperger's Disorder was the "highest functioning" Autism, Pervasive Developmental Disorder Not Otherwise Specified was next and finally Autism being the "lowest functioning" diagnosis. However, over time, it has become more apparent that the lines between these diagnoses are not so clear. While those with Autism may have lower IQ scores, it is not obvious how accurate these scores are, as those with the current Autistic Disorder almost always have severe verbal communication impairment.

It is thought by some that breaking down the new Autism Spectrum Disorder by severity may be a step in the wrong direction. Until there are standardized tools to accurately measure a persons ability to "function", severity is subject to speculation and interpretation. However, as there are no proposals published currently, it is too early to say what these severity levels will look like or whether they will exist at all.

Looking toward the future
While there is much scrutiny over what the DSM-V should look like, it is questionable as to why the Autism Spectrum diagnosis is remaining in the DSM at all. While there are many theories about the origins, it has been established that Autism is not a temporary mental health issue, but a life long neurological and biological issue.

Autism has been defined as a spectrum disorder which indicates there are many varied presentations. One could speculate that Autism, itself, is not the disorder and that other commonly co-morbid medical diagnoses are responsible for any impairment.

Many Autistics also have speech and language disorders, sensory processing disorders, fine and gross motor disorders, immune system dis-regulation, and learning disorders. These disorders do not appear in the DSM, but appear in the ICD (International Classification of Diseases) manual which is medical, in nature.

Would it be more appropriate perhaps to place Autism Spectrum Disorder in the ICD manual with the commonly co-morbid diagnoses? This would ensure that every person diagnosed with an Autism Spectrum Disorder is given appropriate interventions and support customized to individual needs. Attempting to find a "one size fits all" diagnosis seems unrealistic when not every presentation is the same. Indeed, doing so would likely alleviate concerns for covering all the diagnostic criteria in the DSM-V. While many Autistics prefer not to be considered diseased, changing the diagnostic process to the ICD manual is preferable because of the many co-morbid issues.

As it stands now, will these proposed revisions to the mental health diagnostic criteria cause more Autistics to fall through the cracks, as opposed to being recognized, and given the appropriate supports as soon as possible. Does the vague criteria reinforce the standard, narrow diagnosis of Autism, instead of reaching out to acknowledge the wide spectrum of Autism?

_{1. The Complete Guide to Asperger's Syndrome, Attwood}

(Disclosure: Corina Becker serves on the board of the Autism Women's Network)

The Triggering of Dr. Wakefield

2010-02-02T14:25:00.007-05:00

There has been a lot of going ons about the hearing of Dr. Andrew Wakefield and his general misconduct in his 1998 Lancet paper. You remember, the one that claimed to have found a connection between the MMR vaccine and Autism.

Now, a decade later, his findings are thoroughly discredited, and he's been taken to task, not for his findings, but the way in which he conducted his research. It is very well likely that Wakefield will lose the official justification to put "Dr." in front of his name over this. Not that this will stop his more .... loyal followers from doing so. But in the eyes of the academic and medical community, no. He is practically stripped from the title, the respect and authority as a medical professional in the unethical and callous methods of his research.

I'm not going to cover all the findings and the commentary about this. Although, Lizditz has done an excellent job, as usual, compiling a list of the commentary, news coverage and general blog-interaction, including the Lancet officially and completely retracting Wakefield's infamous study.

And no, I'm not going to rehash what pretty much everyone who reads here already knows, that I thoroughly disagree with Wakefield. Period.

No, what I'm wondering about is the fact that Wakefield was approached, seemingly, by the lawyer of families convinced that the vaccine had caused their children's autism, and looking for medical justification to take the vaccine companies to court.

Let's just pause and think. Sure, Wakefield has a history of research targeting to slander the MMR, in the interests of promoting his own vaccine. Sure, he accepted the payment from the lawyer and conducted the research horribly. And yes, the fallout from his actions
1) decreased the vaccination rates, allowing measles, mumps and rubella to return, to sicken, to disable and even outright kill
2) poisoned a portion of the population to believe in scam treatments, costing families vast amounts of money and blindly following every charlatan in a desperate false hope to "fix" their "damaged" children , and
3) set back proper scientific research into proper accommodations and supports for autistic people

But, would Wakefield had been looking to connect the MMR to Autism if it wasn't for those families?

I know, I know, it'll be MEAN of me to blame the families for all of this. After all, they were (possibly still are) in the desperation that many families with autistic members experience today.

And in their desperation, I can imagine that they saw that what countless others have noticed, that the autism becomes apparent around the same time that the vaccine is administered. It's the whole seeing causation in correlation thing, making connections that may not (and most likely don't) exist. It's what humans do, try to make sense of the world. I don't want to count or even consider the many superstitions that humans have in place by following this try of reasoning.

However, for some reason, these families took their hunches, and decided to look for proof and decided to look for compensation. And that decision took their lawyers to Wakefield.

It could be a simple reason that there was, at that time, no information concerning a connection between vaccines and Autism. Or maybe that the information was not easily accessible, or in terms that was understandable. I remember 1998 and computers and the Internet weren't exactly the commodity it is today (well, at least it wasn't for our family).

But either case, these families felt that there was a case to be made in this, and looked for proof.

Now, I don't know who's idea it was to approach Wakefield, pay him to conduct a study with some brutal and unnecessary tests on their children, and basically manufacture favourable results. I don't know whether it was the lawyer, or one or many of the parents.

But SHAME on them.

It is that person that I personally consider to be the most responsible for the fallout that has happened from Wakefield's now-fully-retracted study. Yes, that means I consider them partially responsible for the Jenny McCarthy Body Count, for the unsafe, scientifically unproven quack treatments that cause undue suffering of autistic individuals, and for all manner of emotional and mental stresses that this causes autistic families, including those that can drive parents to murder their autistic children because of a lack of support.

With the misery that has been caused as a result of that person, the decision of the parents and lawyers, and the actions of Wakefield, who really has benefited? What good has come from all of these? Other than the resounding evidence proving Wakefield wrong, I don't think that the autistic community has gained very much. In fact, I don't think that the human population has gained at all, given the increase in completely preventable diseases.

Has those families who originally approached Wakefield really benefited from this, and has any of them even considered themselves to be partially responsible for the fallout?

In closing, while I do think that it's proper that Wakefield to bear responsibility for the part that he played, I think that he is not the only one to bear full responsibility for the crime that has been committed against the autistic community. I'm in no position to actually say who all needs to bear responsibility for this, but I think that it is something to be considered.

After all, one can only be responsible for one's own actions.

[edit: Feb 2011] There's been more breaking news about Wakefield, that he actually changed data in his study, and it's adding more flames to the fire. I have heard rumours that Wakefield approached the lawyers, not them approaching him. However, I have yet to confirm those reports, but I still have to maintain that there is a responsibility from the families for their part in Wakefield's actions, in their funding, in their interest in him producing his results, and the fallout that occurred.

Autism Women's Network

2010-01-28T17:50:00.003-05:00

As Director of Networking (a fancy way of saying Forum Moderator), I present to you the Autism Women's Network, which has officially opened it’s website and Forum, as well as a twitter feed, Facebook group and BlogtalkRadio show (all available on the website).

Lately, we welcomed Professor Simon Baron-Cohen, Liane Holliday Willey, and Ari Ne'eman to the Advisory board, and completed shows with Temple Grandin.

The mission of the Autism Women's Network is to provide effective supports to autistic females of all ages through a sense of community, advocacy and resources.

And some words in the "About" section, from the Executive Director, Sharon daVanport:

Greetings and welcome to the Autism Women’s Network. AWN is dedicated to building a community of autistic females, their families, friends, and supporters who have a place where they can share their experiences amongst a diverse, inclusive, and supportive environment. Our website will always be viewable by non members; however, we ask that you take a moment to complete a simple registration in order to have full access to the site which includes: actively participating in the forum, and posting comments on articles. We invite you to take a look around and join us today.

Now, we're newly started, so not everything is completely sorted out. However, we welcome all people, autistic, non-autistic, male, female and the genderdiverse, to AWN, to support one another and provide a community dedicated to autistic women issues, as well as to just have fun.

I hope that the AWN will be a friendly place for everyone here.

(Disclosure: Corina Becker serves on the board of the Autism Women's Network)

Advocating

2010-01-22T18:01:00.001-05:00

I'm looking into some information for my friend Robin on a situation that's happening with her little sister.

Her little sister is 6 years old and in grade 1, in a regular classroom in Catholic school. She was diagnosed as ("severe") Autism Disorder when she was a toddler, and in the past year, she was able to attend school regularly with an IEP and an EA (Educational Assistant, aka, a one-on-one aid). She got along well with that EA.

Sometime last year, the school was asking for more documentation of her diagnosis, even though the documentation that was provided the previous year was enough for her IEP. The school was needing the further documentation for her IEP, her EA and a special assistitive technology laptop.

The family got documentation from their family doctor and held meetings with the school, which resolved that particular issue.

However, this year, her sister no longer has the EA that she got along with so well, and has a new EA who doesn't seem to be actually helping the sister. She and the EA do not get along, and it has gotten to the point that she does not want to go to school.
The school, now, wants her to go to a different school, because they do not want to provide her with further help to find a different EA.

As it is, Robin's sister was working up to attending school full-time, but now her education plan as been completely disrupted. From what I can see, if the school gets its way, either Robin's sister remains with her dysfunctional EA and descends into meltdown and behavioural problems, or else is forced to start again in a different school, which, as you know, can be traumatic.

Now, the question is, is the school allowed to do this, and what can the family do?

Does anyone with knowledge of Canadian education laws know anything that we can do about this?

Please support Zakh

2010-01-13T17:56:00.002-05:00

I want to stress this issue more. Zakh is an 11 year old autistic boy who is being charged with a felony for pushing and kicking two teachers who were attempting to restrain him as he was trying to calm down from a meltdown. The two teachers in question was, at the most, only bruised and did not need medical attention. Yet this boy is being threatened with being placed in a mental hospital that is not equipped to support autistic people, and even has caused Zakh to regress.

There is more information at http://zakhs.blogspot.com/

Please, spread the word about this to the media, and if you even have a few dollars to spare, please donate, as his grandmother is in need to funds for legal fees.

2010-01-09T23:34:00.002-05:00

Bit delayed in posting this, but things have been a bit rough in the recovering from holidays period. Anyways, I received this email on FaceBook, and I decided that it's important to bring this issue to light.

I'm not going to say much, except that if you don't know about the case with Zakhqurey Price and what we're talking about here, please do a quick search to get caught up on the details.

From Ari Ne'eman of ASAN

Hello,

In the past, we've written to you about advocacy issues relating to the rights of adults and youth on the autism spectrum. Our voices have made a difference on all manner of policy concerns and have sent a clear message that those who seek to deprive Autistic people of any age of their rights will have our community to answer to. Now we'd like to ask you to help us take action to help protect an 11-year old Autistic boy in Arkansas named Zakhqurey Price, currently being charged with felony assault after fighting back when two staff members restrained him in response to behavioral challenges. The school has ignored repeated efforts from Zakh's grandmother over the course of the last five months to obtain needed IEP supports to improve his educational options and manage his behavioral difficulties.

According to the suspension notice, the restraint was in response to Zakh destroying school property - something beyond the scope of what would be allowed under recently introduced federal civil rights legislation around restraint and seclusion in schools. Disability advocates, including ASAN, are fighting to pass this crucial legislation that would broaden the protections available to students like Zakh as well as those with other disabilities and with no disability at all. We have asked for your help in passing this important legislation, and together we can succeed in bringing proposed civil rights protections into law - but not in time to help Zakh. That is why we need you to take action now. Find out how below:

School Principal:
Pam Siebenmorgan (One of the charging parties in Zakh's felony hearing - polite but firm calls and e-mails encouraging her to drop the charges would be helpful)
Phone: 479-646-0834
E-mail: psiebenm@fortsmithschools.org

School Superintendent:
Dr. Benny Gooden (The Superintendent runs the entire school district - polite but firm calls and e-mails communicating how this situation is damaging Fort Smith Public Schools' reputation would be helpful as well)
E-mail: bgooden@fortsmithschools.org
School Board Office: 1-479-785-2501 Ext. 1201

We recommend that you both e-mail and call if you can. If necessary, e-mail is the preferable option. If you would like your e-mails to be passed along to Zakh's grandmother, please bcc: info@autisticadvocacy.org. Please stress the importance of Fort Smith Public Schools taking the following steps:

-Drop the charges against Zakhqurey Price

-Work with his grandmother to put in place an IEP that will fulfill Zakh's right for a Free and Appropriate Public Education in the Least Restrictive Environment

-Improve training for school personnel to prevent future such incidents and to ensure that students on the autism spectrum as well as with other disabilities are included, supported and educated in Fort Smith Public Schools.

If Zakh is declared incompetent as part of the hearing scheduled for January 12th, state law requires that he be placed into a mental hospital for at least 30 days. Carole's grandmother fears that, due to the negative repercussions of being taken out of the community and being forced into an institutional setting, Zakh may lose skills in such an environment and not be returned to her indefinitely. That is why we need you to act now. Please distribute and repost this action alert. Thank you for your time and your advocacy, and as always, Nothing About Us, Without Us!

Regards,
Ari Ne'eman
President
The Autistic Self Advocacy Network
http://www.autisticadvocacy.org
info@autisticadvocacy.org
(202) 596-1056

Merry Christmas

2009-12-24T23:33:00.005-05:00

MERRY CHRISTMAS!

I know that I should be saying Season's Greetings and Happy Holidays, and get away with saying Happy New Year.

However, this is my holiday which I'd like to share the celebration. If you are celebrating a holiday, feel free to comment with your greeting. I know that Hanukkah is over, but better late than never?

Updates are going to be delayed right now, as the holidays are causing massive dysfunction in my ability to do things in general. I expect to be holed up in my room playing Kingdom Hearts, or trying not to fall on my ass skating, for quite a while.

Til then, have a good one!!

**Characters are from my comics the Lord of the Shepherd and Amhelaki Misadventures. Also, this image is available on DeviantArt

Youngest Autistic Nominee on National Council on Disability

2009-12-19T19:59:00.000-05:00

Not too long ago I posted the Press Release from the White House announcing that Ari Ne'eman of the Autistic Self Advocacy Network has been nominated by President Obama to the National Council on Disability.

As a part of the NCD, Ari will be representing the neurodiversity perspective in advising the President, Congress and executive branch agencies

"to promote policies, programs, practices, and procedures that guarantee equal opportunity for all individuals with disabilities, regardless of the nature or severity of the disability and to empower individuals with disabilities to achieve economic self-sufficiency, independent living, and inclusion and integration into all aspects of society." (National Council on Disability website, main page)

If you haven't gathered from all the ruckus that's being made across the Internet, this is a big deal, for two reasons:

The first is that he is the first openly autistic appointee, breaking the unsaid barriers keeping autistic people from being a part of the decision process regarding, well, everything about our lives. This marks a major step in the inclusion of autistic people as a part of society, not just in terms of social inclusion, but also on the political and governmental level, and recognizes us as citizens of the countries we live in, with the rights, freedoms and responsibilities that being a citizen includes.

The second is that Ari is also the youngest appointee in the history of the United States, as being 22 years old, Ari is younger than the previous holder, Mike Lopez at the age of 24. However, while his critics are citing that his age makes him ineligible for his nomination, I would argue that age is not an indication of ability in this case.

Just looking at the UMBC, Newsweek Magazine and New York Magazine articles, Ari Ne'eman has been working in the cross-disability civil rights field for quite some time, and while he's not actively involved and outspoken about every issue (or at least, the media hasn't picked up on it), Ari still spearheads and pushes forward on many campaigns. In the very brief mini-bio that the White House produced:

"Ari Ne’eman is the Founding President of the Autistic Self-Advocacy Network, where he initiates and directs efforts to increase the representation of autistic individuals in public policy discussions. He is a leading advocate in the neurodiversity movement, frequently briefing policymakers and speaking publicly on disability and autism policy issues. Mr. Ne’eman also serves as Vice Chair of the New Jersey Adults with Autism Task Force, where he represents autistic adults in reviewing the state’s autism services. He also previously served on the New Jersey’s Special Education Review Commission, where he authored a minority report on the topic of aversives, restraint and seclusion. Mr. Ne’eman previously served as the Policy Workgroup Leader for the Youth Advisory Council to the National Council on Disability. He is a board member of TASH and the Autism National Committee. In 2008, he received the HSC Foundation “Advocates in Disability” Award. Mr. Ne’eman is currently an undergraduate at the University of Maryland-Baltimore County where he studies political science and expects to graduate in May 2010. In 2000, Mr. Ne’eman was diagnosed with Asperger’s Syndrome, an autism spectrum disorder."
(Press Release, Office of the Press Secretary, 16 December 2009)

I'm going to forgive the White House for the slight slip with the "neurodiversity movement", since we're not an organized movement, per say, but we are a thought movement. We agree, more or less, with the same flow of thought that we seek to advocate in our daily actions and lives. However, I have to point it out that we are not an organization, because somewhere out there, some one is thinking that this is a part of some grand evil plot towards world domination, or something. Right, because we renounce autism as a tragedy to be avoided and cured, and want all autistic people to have equal civil rights and access to accommodations and supports, is part of a conspiracy...

Anyways, ending tangent there and moving right along.

The point is, we have a very experienced young man (younger than me, too) being nominated into a position that allows him (as well as other disability rights advocates) the ability to give advice and input directly to the President, Congress and other executive branches, a young man who is dedicated to promoting the human rights of all autistic people across the spectrum and works continually for this cause.

Yet, because he doesn't see autism and disabilities as an automatically negative element, but instead as a person's difference that can result in unique challenges and difficulties in a setting that is ill-suited to accommodate and support individuals, there are groups out there who would rather Ari not be a member of the NCD. Actually, that's a bit of an understatement; they are venomously against Ari and the neurodiversity movement of thought.

But of course, for returning readers of this blog, this really should not be a surprise. And of course, these people are exercising their right of free speech and protestation to encourage people to write to their Senators, stating that they are against Ari.

Now, this is up to each of you, but I would people who support Ari, even marginally, to contact their Senators and give them a balanced view on this, in that there are members of the autistic and cross-disability community who support Ari. Being that I'm Canadian, I don't really have a Senator to contact, but Nicocoer has provided me with some excellent resources to get in touch with Congress here , the various U.S. Senators here, and even President Obama at the White House.

And since the form on the White House site allows for people outside of the US to submit messages, here is mine:

Dear Mr. President,

I would like to let you know how much I am very pleased and delighted in your nomination of Ari Ne'eman to the National Council on Disability.

As an autistic self-advocate myself, I have always admired Ari for his dedication to promote the causes of the Cross-disability community and the best interests of all autistic people in the United States.

It heartens me to see the United States take such a progressive step towards including and accepting autistic people as citizens involved with the nations, and I hope that the rest of the world takes notice and learns.

On behalf of myself and other like-minded autistic individuals, I would like to thank you for including our voice in issues that concern us.

Yours truly,
Corina