Toronto Star Interview on ABA/IBI

Back in April, I was approached by a colleague of mine on Twitter about being interviewed by a reporter for the Toronto Star.  The story was about the recent changes to Ontario funding to ABA/IBI. If you aren't aware, Ontario just stopped direct funding for ABA/IBI for over the age of 5 years old, with something of a hazy declaration for more funding to other therapies and supports.

Which, pro-ABA/IBI people don't like, cause the parents have been told that this is the only thing that works, and the professionals, well, they have an industry, even if they mean well, it's an industry that causes harm.

Anyways, the reporter of the article was looking for autistic points of view, and found me.  I prefer email interviews, which has upsides and downsides. Downside, no nice sound-clips to put on the radio.  Upside, despite only having a couple of my sentences actually used in the article, I have the entire email interview to post.

I understand that the reporter may not have had complete control of the editing process; pictures and stories of children sure are more appealing than those of a 31-year old autistic woman, after all.  But I like being fully represented, signed no documents to keep the interview quiet, and so I retain my rights to publicize my side of the interview.

So.  Here is the article that was published by the Toronto Star. 

And here is the complete interview that I gave them:

 You wrote that autistic narratives and issues are being completely overlooked in the  discussion. Can you elaborate on what is being left out that most concerns you?

1) In Canada, there has been a silencing of autistic narratives.  It’s subtle, but it’s there.  It can be seen with how there are barely any services for autistic adults, for autistic women. It can be felt with our absence in discussions about our lives, our past, present, and future. But autistic people notice it acutely, as this absence affects our lives, in the supports we receive, in how organizations and support staff treat us.  And the only real cure for this is for us to a part of those discussions, part of the decisions made by support organizations and provincial committees, to have our voices and narratives be included in all the ways that affect our lives.  To put it simply, I am a Canadian citizen, myself and other autistic people want to be part of the process in shaping our futures in our nation.

Do you have an opinion about ABA principles or IBI, and the belief expressed by many parents that their children's futures depend on intensive behavioural intervention? 

 

2) There are two problems with ABA and IBI; that it is the best chance for an autistic person’s future, despite a lack of scientific and ethically sound evidence, and that ABA/IBI principles are based on wrong assumptions regarding behaviour and autistic people. ABA/IBI is based on behaviourism, which states that if you change a person’s outward behaviour, you change how a person thinks.  It was this same premise that created gay conversion therapy, also by the creator of ABA/IBI, Ivar Lovaas. We no longer think of autism as a mental illness, knowing that it is neurological wiring, how our brains work, but the premise of behavourism still remains in ABA/IBI.  Thus, ABA/IBI doesn’t really teach life skills, or offers the best hope for an autistic person’s future, but teaches that our behaviour, our way of thinking and acting, is wrong and must be eliminated, often with a lot of traumatic stress. The accounts of autistic survivors account for a large percent of PTSD caused by ABA/IBI therapy throughout their lives, and the fact that these narratives are ignored does a huge injustice for the survivors, present autistic children, and future autistic people.

But autistic children are given poor prognosis, with claims that ABA/IBI is the only chance they have, when, quite frankly, this just isn’t true. So the decision about ABA/IBI in Ontario has mixed results; a decrease in focus on ABA/IBI, and some encouragement to look into other supports and approaches for autistic people.

 

What are your thoughts on what the provincial government's priority should be when it comes to meeting the needs of children with autism and their families? Can you talk about your own experiences -- what supports you think were most important as a child, and what would have helped that you didn't receive?

3) (tying in a little from above) What the provincial government’s priority, and all service providers, need to do is look into services beyond ABA/IBI.  It does not help that a lot of current research is into what causes autism, and few little is researching what helps us throughout our lives.  Listening to what autistic adults say about what services we need as adults is one of the steps to providing supports for autistic teens, children, and elders.  I would like to see more supports for non-verbal communication, in conjunction with mental health and emergency services, as well as dealing with issues about racism, violence against women, and poverty, as a start. Ideally, the supports we receive as children should transition with us into adolescence, adulthood, and into old age. Yet, there are hardly if any services for adults, and they do not support the full range of abilities and impairments that autistic people have.

Do you have suggestions on how to better include the voices of Ontario people with autism on this particular topic and in media stories? When we're talking about the specifics of IBI this can be challenging, as older teens and young adults who have experienced the therapy aren't always able to recall the experience or express how it affected them

 

4) When talking about autism, parents and professionals are usually the ones taking the stage right now. However, I think there is a huge disservice by not including the voices of autistic people, in government decisions.  Parents, professionals, and other caregivers want what’s best for their children, whether age they might be, but it is autistic adults who can say “this was harmful for me, these other supports are more appropriate” or “making these changes to a classroom would have helped me”, because we’re the ones with direct experience.  It just makes sense to ask willing autistic people for advice on what needs to change in policy and practices. And for this to happen, people also need to be open to various styles in which someone’s narrative is expressed, not so much dependency on speaking, but valuing other methods of communication. 

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Let's Talk About The AODA

I'm finding that people inside and outside Ontario don't know what the AODA is, and especially Ontarians, that's not good, cause the AODA is a big thing.  I'm taking a course on it right now, so here's what I got so far. 

AODA stands for the Accessibility for Ontarians with Disabilities Act (2005).  It will eventually replace the also-in-effect Ontarians with Disabilities Act (2001), which applies only to making government accessible.  The AODA affects not just the government, but everywhere else.  

The goal of the AODA is to make Ontario completely accessible (or as reasonably accessible as possible) by the year 2025 in customer service, employment, information and communication, built environments, and transportation.  This includes the public sector (government, education, medical, religious organizations) and private sector (businesses). 

Basically, the government of Ontario recognizes that 1 in 7 Ontarians are disabled (approximately 1.7 million Ontarians) and that this number will rise in years to come.  Especially with the aging population, it's been estimated that about 60% of the population will be disabled.  And the province needs to be accessible, to follow human rights, equality, participation of citizens and to change perceptions on disability. 

What's exciting about the AODA is that it was created by non-political people, people who usually don't get involved with government and it was unanimously passed by government.  It is legislation from the people, rather than from the government.  It takes the burden of accessibility off the disabled (in theory), and makes it an issue of the province.  So instead of having to fight for Accessibilty case by case, violations of the AODA are seen as a crime against the province and the province is responsible for pursuing crimes of inaccessibility.  

So how is this suppose to work?  Well, there are five committees, for transportation, employment, customer service, information and communication, and built environments.  These committees release standards that various businesses and organizations have to meet by certain time periods.  For example, just this year, the standards for large businesses and non-profits came into effect.  They have to meet these standards, or, failing an inspection or non-compliance, face a fine of $50,000.  

Smaller businesses have more time to comply, but there's still arguments saying that the government should help them to achieve accessibility on time.  

But part of compliance is to submit a report, I believe every five years, the same way that the standards are reviewed and renewed every five years.  But this is why you'll see hospitals, schools, and businesses releasing accessibility plans on their websites in Canada; it's part of the AODA that they have this information available to the public.  They also are responsible for training their staff.  

Municipalities with populations over 10,000, and places that want to, are required to have an accessible advisory committee.  These people advises the municipality on leases, purchases, constructions, and renovations of buildings the city is in charge of, and to review the plans and drawings of development projects.  

There is also an Accessibility Directorate of Ontario.  This person is in charge of accessibility in public education.  I'm not entirely sure how they are suppose to work yet, to be perfectly honest.  

Yes, the AODA has some problems.  For example, as mentioned in the Beer Report (PDF) there are issues with government leadership and involvement, notably with compliance and enforcement.  There are also issues with harmonization between the standards, with confusing overlaps and inconsistencies.  Think about how transportation and built environments must overlap, or customer service and built environments, or employment and customer service.  

There are also issues with awareness.  A growing number of news articles report disabled people being turned out of restaurants with their service animals, because the owners weren't aware of the AODA or refused to acknowledge a service animal.  But there's also public awareness that the AODA is a part of their legislation, that accessibility is part of their rights.  

Obviously, the AODA isn't in complete effect yet, and what is in effect is not perfect.  However, it's suppose to be elections in the next year or so, and this is working to make a difference, not only for current disabled people, but for the future as well.  

For more information, I do recommend reading the Beer Report (PDF) as it's called, as it is a good breakdown of the AODA.  For AODA news, I recommend the AODA Alliance. 

Goal Reached!

My ChipIn goal has been reached!

Thank you all who contributed!!!

It'll take a few days for the money to clear from Paypal to my bank, but it shouldn't be more than a week.  

I'll be covering the taxes myself; I figure it's only fair that I do pay some of the costs myself.  And with all of the support I've gotten with everyone, it won't be quite a burden on my limited funds! 

Now comes the fun part; what colour should I get it in?  Hmmmmmmm.....  

Assistive Apps for iPad

[edit:  I also have a page on ChipIn available through this link, if the widget below is not working]

As I'm raising money for my own educational iPad, I thought I should let you know what I'll be using it for and what will be put on it.

First of all, I fully intend my iPad to be an assistive device.  I'll either be taking it to school or using it to test out apps for the Autistic Adult App Project.  As I am in Disability Studies focusing on social change, I hope that I'll be able to use what I learn with my iPad to give back to the greater Autism and disability communities.

Now, I'm planning to install very specific apps on my iPad.  I think that it's fair to let people who are investing in me know what I'm going to do with their donations.

Inspiration Maps: based on Inspiration software that I've been using for the past ten years.  It's a visual brainstorming program that turns a mind-map into an outline.  I can't count all the ways this program has been vital to my essay writing. With this, I can work on essays even away from my computer. (if interested, there is also a free version)

Full Version: $9.99

Blackboard Learn Mobile: this is actually a required app.  A lot of my courses has online content, and my school uses Blackboard systems.  This app thus will allow me to access my course materials anywhere that I have an internet connection.

 Free

Open Word:  a word processor, simple enough.  I picked this one because I'm used to the freeware Open Office, and this app supports .odt, .doc, and .docx formats.  Plus it looks like it can connect to Dropbox, Google Drive, and other networks.  
Always good to have a decent word processor.  

$3.99

 myHomework: homework organizer.  Definitely handy for when I have multiple courses with lots of assignments. 



Free

Miracle Modus: I reviewed this on the Autistic Adult App Project earlier.  This is an app created by an autistic programmer to deal with stress and sensory overload.  I find it quite useful and effective.


Free

EpicWin: one of the first apps I reviewed, and worth every penny.  A to-do list that integrates RPG gaming to give immediate rewards for completing tasks.  I use it to help me remember to do things like take meds, do laundry, and other functioning tasks.  Cause even when I'm away at school, I got to do things like eat, eh. 

$2.99

Talk Assist:  Another of the first apps I reviewed.  This is a text to speech app, for when I'm having difficulty speaking.  Free and easy to use.


Free

Dictionary.com: a dictionary and thesaurus, pretty basic, but meets most of my immediate needs until I can get to my large volumes.



Free

eSleep Lite: I recently reviewed this one on the Autistic Adult App Project. While designed to help people relax to sleep, I find it useful to relieve stress in order to work!  This is one of the better apps I've found out there. 

Free

Wikipedia: While I'd never suggest referencing Wiki as a source on an essay, it's a good place to look up general information about a topic that I'm unfamiliar with.  At least, most of the time, and until I can get to a library.

Free

ICE Standard: It's not assistive or educational software per say, but I think that it's important to have this one.  In short, it's a medical emergency ID card app.  I have one on my iPod, and I've used the notes section to put in autism-related information for first responders.  While I love the medical jewellery I make, I can include all my meds and contact information, which if I don't have to use in an emergency, can be handy if I ever have to talk to a doctor, especially a doctor that doesn't know me.           Free


I haven't decided yet, but I'm looking into an APA and MLA format guide.  As part of the social sciences, Disability Studies uses APA style, but I find it rather difficult and confusing.  Since I can practically cite MLA in my sleep, and my professors have been pretty good so far about it, I use MLA instead.  However, it's good to have style reference guides to double check, for both styles.  The ones that I am looking at right now are between $1.99 and $3.99.

Now, you'll notice that is eleven apps I have planned for my iPad, and that most of them are 1) free or cheap and 2) not necessarily disability-related.  I don't think I need to explain the cheap part; I have a very limited budget, and if there's something out there that suits my needs without (much) adjustment, I'll use it.

As for the disability aspect, well, part of it is the nature of my disabilities; most of which is information decoding and processing.   When I'm in the classroom, I have a number of accommodations set up, mainly note-takers (who usually emailed me their notes, oh hey look, email access on an iPad! Bam! Got my notes to study wherever I go), and I have texts scanned in for me, access to books on tape, and so on.  When the courses are online, the materials are online, and are in a format that automatically meets my accessibility needs.  At least, most of the time.  So the issue then is my own productivity.

Which leads me to the next part; what you need to remember is that I'm a late-diagnosis.  While diagnosed with ADHD in Grade 1, I didn't know about it until Grade 6, and accommodations were whatever my parents could scramble up with my teachers, cause I had no formal IEP until Grade 10 and I was in a private elementary/junior high school with no special needs programs at all.  I didn't feel comfortable using accommodations until at least Grade 12, which is also the year I was diagnosed as autistic.

So I have a strong belief in doing more with less.  I also had something of a crash course in learning what works best with me.  So I'm not about to waste my or anyone else's time and money on things that is not going to work. Now, I know these apps above are the best apps for me, or most like to be the best apps for me.  It's kinda hard to tell when I've never had an iPad before, and it might be that in the future I'll find more wonderful apps.  But from my experiences and research, these are the best. 

And final part.  The iPad itself.  I know I go on about apps and the wonderful things app technology means for disabilities.  However, let's look at the iPad itself.  I know I just said that I never had an iPad, but I've tested out tablets in stores and whenever I could get them away from friends.  To me, tablet computers are exciting in of themselves, because it is the device that makes apps possible.  It is a small, lightweight computer that is portable, (generally) easy to use, conceivably compatible with various systems, and adaptable to meet many needs.   This opens doors for many disabled people, not just autistic people.  And there are so many styles and models to choose from, something almost unheard of in assistive technology until recently.

For me, the iPad means more than just the latest gadget to show off to my friends (ironically, the reason my parents bought my first iPod when all I asked for was an mp3 player).   It is a device that helps me to organize my thoughts, to keep track of my schoolwork, to manage my stress levels, and to help me learn.  It does this in part by the apps it provides, and also by its design.  Yes, there are a lot of tablets out there, a lot of which are cheaper.  However, as I pointed out above, I know what works for me.  When I tested tablets, I found that the iPad was the only one with a big enough screen for me to work the most comfortably, that I could type easier and use the system more fluidly.  To most people, my difficulties with perception and motor skills is unnoticeable, but to me, it is a source of frustration.

Which is why being able to get an iPad means so much to me.  It will allow me an ease of access in the classroom that I never had before.  Each donation towards my iPad makes me wordlessly excited! I want to thank everyone, and I don't know how!!  Every little bit goes towards helping me give back to the communities.

So please, if you haven't already done so, make even a small donation, or help spread the word!  Every little bit helps! And if you have already done so, I thank you immensely. 


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ChipIn for School iPad

[edit: I also have a page on ChipIn, available though this link, in case the widget below isn't working.] 

I remember back in 2003, when I was first setting out to university, it was suggested that I get both a laptop and a palm pilot.  Remember Palm Pilots?  I vaguely do.  From what I remember, I was to use one as a digital calender/schedule book to keep me on track.  Given the recent developments in technology, I'm not sure whether they're even still made nowadays.

PalmPilot

I was suppose to use a laptop as a glorified typewriter, to take class notes and write essays on.  I wasn't too keen on that, given how bulky, heavy and expensive laptops were (and still kinda are).  My parents and I found a compromise, getting me a Dana from AlphaSmart.

AlphaSmart Dana, now known as NEO

Basically it was a PalmPilot with a full keyboard and a big enough memory that I could type up research, pieces of essays, and some class notes with ease.  It would sync with a computer and transfer a document into, well, any open window.  I had a note taker in class, so I mainly used my Dana for research.  I'd go into the library, find passages of information I needed, then copy it down with references.  It was light-weight enough that I could take it to school regularly in my backpack.  Unfortunately, the battery passed on some time ago.

Now, my needs have changed over the years, as I've gone from being on campus all the time, to being on campus occasionally.  I need something less like a Dana, and more like a laptop, without being as bulky and heavy (cause yes, they are still that) as one.  I need something that I can take to my intensive sessions, whether for two weeks or a weekend, that has the assistive technology of my full computer and iPod, but can do notes and be portable.

People have suggested I get an iPad.   To be honest, I've thought about it, for over a year now.  At IMFAR, I got to see iPads in action.  For the past year, I've browsed through iPad apps and sighed as I wishlisted them.  Every chance I got, I'd test out the display models in stores.  And in long last, I have decided that I should get an iPad.

It's light and portable.  It has full keyboard and word processing capabilities.  It has apps, for functioning, stress relief and communication, plus testing.  It'll be used for school and education purposes only.

The only issue is money.  I'm a low-income student, with a part-time job and two courses.  I could maybe afford the apps that I need for on the iPad, but I can't afford the iPad itself.  So, I've started up a ChipIn.  I'll be grateful for whatever people donate.  Every little bit helps!

Expanding Spoons

The original Spoon Theory was created by Christine Miserandino to explain living with Lupus to her friends.  Since then, many people have picked up the metaphor and applied it not only to diseases, but to various disabilities as well.  I know many people in the Autism communities who use the metaphor as an expression.  I myself have attempted to merge Spoon Theory with my own metaphors of Batteries, and use the expressions in my regular life, with spoons being used more frequently than batteries 

Lately, I have found myself and my friends being creative with the metaphor. For example, "my spoons are too big for that", "my spoons are too small" and "I don't have the right type of spoon for that".

As my friends and I have discovered, people can have different size spoons and spoons that do different things.  Take a look around a kitchen.  There are measuring spoons, teaspoons, tablespoons, serving spoons, soup spoons, stirring spoons, salad spoons (okay, those are tongs, but they look rather like spoons to me).  There are spoons designed for certain tasks and certain uses, and there are general, all-purpose spoons. 

In the world of spoons, there is a great diversity that can be used to expand the use of Spoon Theory from being a metaphor to being an expression, a key wording to expain why someone is withdrawing or leaving ("I need to get more spoons") or as a short form for why someone cannot currently do something that they might have been able to do before ("I don't have that spoon right now"). 

Spoons are the tools, abilities to access and take our energy (batteries, as I've previously called it) to do things.  Sometimes I've had spoons that are totally not right for the task I'm supposed to do.  Sometimes I have spoons that can't access the energy I know I still have to do something.  Sometimes my spoons are too small for a job.  Sometimes they're too big.  Sometimes I can use what I've got to do things, even if it's not the right spoon, and sometimes I just can't.

My friends say that their spoons are too big if it's tough.  As in, it takes more energy-brain power-ability to do something.   If it's a small spoon job, then it's a pretty easy task, maybe one that can be done without thinking too hard about it.  We joke about each of us having different spoons as our "regular" spoons, some of us using teaspoons, while others use ladles. 

Sometimes I have too many spoons, sometimes I have too many and have left overs at the end of the day.  I wake up each morning never too many spoons I have, because sometimes I don't actually know, like they're hidden and only revealed to me throughout the day.  So I ration spoons carefully, because it might be one of those days where I'm in danger of coming up short in the end.  Because if there's anything that I've learned, it's that I can never totally forget that it costs me to be a part of the world, and that I always could use a few more spoons.

Crisis with the Help Lines

You know those crisis help phone lines?  The woman's shelter lines, the pregnancy lines, the talk help, kids help lines, and mental health crisis lines?  Those.  It has occurred to me that those help lines are kinda ableist.

Think about it.  They all require people call them over the telephone and speak to them.

In a time when you can get customer service over an internet live chat, where are the help lines for people who are non-verbal, people who communicate better in written or typed word, or who are so into crisis mode that they lose all verbal capabilities?  Or people whom English is not their first language or whom aren't fluent in English?  Or who have sensory problems and have difficulties using a telephone? Or are in a situation where they cannot seek assistance through their caregivers to communicate the crisis?

Also, when in crisis, it can be very hard to verbalize the pain and what going through, even if one does retain verbal capabilities. Failure to address the needs of the non-verbal population means that there are people who are not being supported or have access to community resources and accommodations.  This leads people further into crisis, with no where to turn for help. 

So when someone goes into crisis mode, they also go into survival mode, a state where someone purposely or subconsciously shuts down skills in order to cope.  This is dangerous, because now the person have further difficulty in  accessing community help and services, cannot communicate, and is more vulnerable to further crisis, including escalation into self-harm coping strategies.  The longer in this state, the pain caused by the crisis can lead to extreme measures of self-harm, eventually leading to suicidal behaviour. 

At this stage, there are more than one crisis; the initial crisis and the mental health crisis.  The results of care then become dependent not only on the structure of support for that person, but also the preparation of local mental health services in dealing with complicated crisis situations. 

Now, there are online resources available for mental health crisis, such as the list provided by Boggle, including a Forum and live-chat online services.  However, there needs to be access to non-verbal crisis support across the global, and a connection to local mental health services.  With many service providers, crisis support phone lines already exist, and they maintain a team to respond to calls.  What if there was also a way to text into the crisis line?  What about maintaining a Twitter and/or Facebook account, where it's possible to private message the operator? Monitoring Twitter and Facebook messages can be done while monitoring a phone line.  There is also the option of a Forum, where there can be group support and private messaging options for daily support as well as crisis support. 

Non-verbal accessibility is possible, and is incredibly valuable to a wide population, not just non-verbal Autistic people.  It has the possibility of connecting mental health services to the online communities, to people who cannot otherwise access much needed support.  Yes, it does require making adjustments, getting people to write code, retraining employees, and other costly changes.  But this is an area of need within the disability and mental health communities that is not being adequately met, resulting in the isolation and despair of many.  It also sends out a negative message to people, that their needs are not deemed worth to be addressed, that their crisis, their methods of communication, are not significant. 

In my opinion, it is the obligation of mental health services to develop ways to make their services accessible to all.  Otherwise, they are failing to help the people that they are suppose to support, a failure that can have drastic and fatal results.  Yet, it is possible to correct this, to make crisis and other types of support accessible, if service providers are able to embrace alternative, online and text-based methods of communication.  Then truly they will be able to reach those who need their services.