Regarding Kate Winslet and the Golden Hat

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.

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

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.

1. 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.
2. I hate red-coloured candy. Not only does it not taste good, but I get migraine headaches from them too.
3. I dislike initiating phone calls, especially to strangers. I prefer to call places after hours and leave a message on the message machine.
4. I like dressing up and can even imagine writing zombie and scary movies, but I can't watch them.
5. I am either the best or worse procrastinator you'll ever meet. I can procrastinate at procrastinating at procrastinating to procrastinate.
6. 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.
7. I have, on occasion, out-geeked my geeky boyfriend. With references to stuff I haven't even watched or played.
8. 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....

1. Mama Be Good
2. Genderbitch
3. Cracked Mirror in Shalott
4. Abnormaldiversity
5. Neuroskeptic
6. Autist's Corner
7. Comet's Corner

Ta-Da!!! I found seven bloggers.

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

:D

A Comment Made on Daybreak

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.

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Profiling Autistic Women

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)
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The Perspectives of Luck and Autism

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? 

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DNA Testing and the Future of Autism

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

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.