Friday, December 18, 2009

From the soap box on the topic of autism…

***steps onto soap box***

Hi y’all!

Longtime readers know that a bitch’s older brother is autistic.

This one goes out to journalists who report on autism and to my fellow members of the autism spectrum community.

My brother Bill is damn near 40. Lawd, have mercy. He’s profoundly autistic, aphasic and a fantabulous adult.

I want you all to think about that for a moment.

My brother is an adult.

He’s going to be 40 years old next year. Autism is a communication disorder...despite some youthful behaviors, autism will not prevent my brother from experiencing all the physical shit that comes with aging.

Autism is not a childhood disorder.

Autistic kids do not grow out of it. I don’t give a shit about celebrities who claim otherwise or books that speculate about blah, blah and another blah.

The current reality is that autistic kids will become autistic adults.

I learned this morning that a study is about to be release that found that there has been a significant increase in youth diagnosed with autism…and I learned that shit through a report that focused on early diagnosis (a god thing) and children with autism (a logical starting point) but stopped there (the very definition of wrongness, because autism is not a childhood disorder).

I’m not pissing in the Corn Flakes of the cure community.

Go forth and get your research on, y’all!

But my brother is gonna be 40 years old and our life is not a scene from the movie Awakenings…we live our lives in the real…in the here and now that includes a never ending lack of funding, programs, options and support.

The autism spectrum disorder community must stand up and include the needs of autistic adults in their policy and research appeals.

I can speak from personal experience…parents do NOT want to wait for their child to become and adult to address the needs of autistic adults.

Any increase in diagnosis increases the urgency of the need for society to look beyond the first 18 years and at the needs of autistic adults too.

So, I’m saying it here and now…I’m making a request – when journalists report on a study that says the autism rate is going up please include some shit about what that means for society in the future, about the needs of autistic adults too and you might want to toss in a profile of a family with an autistic adult so viewers can better understand that shit.

Time is not standing still on this issue…and this bitch wouldn’t wish the anxiety and frustration over care and finding programs and funding the programs we find and getting comprehensive medical coverage and maintaining nutritional support and so forth and so on that my sister and I currently go through on anyone.

Pause…consider…continue.

Plus listening to reports that neglect to touch on autistic adults makes my Afro hurt.

Ugh…okay…I’m done.

***steps down from soap box***

12 comments:

Lydia Encyclopedia said...

As a high functioning autistic adult (20 though, nowhere near 40) I want to thank you for saying this, Shark-fu. I feel like neurotypicals often want to sweep autistic adults under the rug, and want to focus on cures (ugh!) rather than putting their resources towards helping us find jobs, live as independently as possible, or if we can't live independently, have decent housing and care.
We do exist. We're not going away, and it would be wonderful to be acknowledged as such, instead of pretending that autism magically disappears when you turn 18.

Anonymous said...

Thank you...your post is informative. I don't have autistic children or grandchildren, but I hear about this and it concerns me, especially if vaccinations might be the culprit. And like you say, when they become adults. We live in a f'd up world that lacks compassion and intellect. Peace and well being to you and your family.

Shark-fu said...

Thanks Anonymous!

I've lived my entire life with autism in it so I don't fear it...we just have a different kind of normal and it's not the horror show folks make it out to be.

Blessed be!

Cheryl said...

My nephew is an adult who was diagnosed as Asperger's in his teens. He is in his early twenties now and supports for adults with autism are almost completely absent, especially here in the Great White North. Free health care doesn't mean squat when there is no care provided to those who need it. I'm glad you made this post, Shark-Fu.

Also anonymous, the link between vaccines and autism is exceptionally weak. There is plenty of research done on it, and no conclusive link has been found. I'm sorry, I don't mean to take over your comments section, but this particular piece of misinformation is curiously persistent. Anyways, here are a few links:
http://blogs.discovermagazine.com/badastronomy/2008/05/12/vaccines-do-not-cause-autism/

http://blogs.discovermagazine.com/badastronomy/2008/08/22/antivaxxers-must-be-stopped-now/

The second post has a few links with information on vaccinations and autism. I'm sorry, I hope this isn't rude, if it is just delete. I won't mind, I run off at the mouth too often. ;)

Anonymous said...

You're such a persuasive writer. I like to read and learn from your posts. I hope people all over the country are following you so you can influence millions.

Grafton said...

Oh, if they went around doing research about autistic adults, they would probably discover, as the censuses seem to have done in the UK, that the rate of autism is actually the same across age groups, which would indicate that the rate of autism is not increasing, which would make their OMFG EPIDEMIC! squalling less exciting and profitable.

Meghan said...

Thank you thank you thank you! I work in the ASD community and adults with autism are SO often overlooked. There is not enough funding for children and NO funding for adults. So many people think working with children is difficult, but working with a 200lb adult is a whole different story.
Keep educating people and keep the Autism posts coming. It's nice to know we are not alone.

Dusty said...

Bill is so lucky to have you and your sista Shark Fu..because you guys never give up!

I can't imagine the frustration you feel..well, I can a little bit..but in reality I deal with nothing that even comes close to what you and your family deal with.

Anonymous said...

I am newly married to a wonderful 55 y o aspbergers man. Never diagnosed, but sure as hell not neurotypical. I am not sure it is an epidemic as much as it is just now being labled as such. In school he was continually told "you're not working up to your potential". And I don't think it goes away, but just like neurotypical people, they mature. I wish so much there was more information for adults with this issue. We have really good insurance, but that does not really help when there just is no good info on these adults. The only help the psychiatrist gives is amphetamines. They do help a little, mostly with side issues, like his hyperactivity, which is simply a comorbid state, rather than the actual asp. symptoms. Seems the psychiatrist does not believe this even exists. If anyone has suggestions for anything that may help I would surely appreciate. Can't even find much info on the web that is useful.

Grafton said...

Anonymous --

Click on my name; it should take you to this support forum that I administrate, for autistic adults and people in close relationships with them.

Indeed, shrinks often don't know what to do with adults, and often don't quite believe in autism without speech delay. I get a lot of benefit from meds and am not sure if it is correct to say that they treat a comorbid state rather than an AS symptom. Certainly I don't believe that there's anything to be done about the structure of my brain except accept that it is me.

Cheryl said...

I am in the same boat as recently married anonymous. The help for adults with asperger's seems to concentrate on resources for the person him or herself. There is virtually nothing for those who are living with people with asperger's. My nephew does not seem disabled, but he really is. And he has Body dysmorphic disorder to boot. :( It's very hard on him and on his family.

Grafton said...

Hmm? What sort of resources are you looking for?

There are any number of support groups available for parents of autists, including parents those autists who, like your nephew, are young adults. It's not terribly odd for NTs in their early twenties to be living with their parents, and we tend to mature more slowly.

There are also quite a few quite nasty little groups for women married to men with AS to get together and discuss how being autistic is abuse of one's spouse and children.

And of course, considering how popular and accepted is the notion that living with autistic people is horribly hard on you, there's always your friendly script-writing shrink.