I Must Be Missing Something

I would just like to say that there is no proof that Albert Einstein or Andy Warhol had Aspergers and I think the movement to authenticate this is ill-conceived, on many fronts.

I tell you, I must be missing something because I don’t get it. I don’t get what sounds like this debate: either embrace, celebrate, and accept your ASD child or rescue them. And the reason I don’t get it is that, (1) I am not trying to rescue, cure, or fix my son (2) I already embrace, celebrate, and accept my son, and (3) I most definitely AM trying to remediate the autism that my son has, not the autism that my son IS because my son IS NOT AUTISM. Or Asperger’s. He is a human being, uniquely gifted as all children are, with magnificent qualities and his own perfect expression of self.

And he has challenges, as we all do. And his challenges resulted in missing the developmental train, so to speak. Unless he’s provided with the opportunity to develop the ability to navigate the dynamic system of social interaction, things will be harder for him in the world, harder than those who didn't miss the train.

Will he die? Will he wander the globe, lost, alone, and destitute? Not necessarily. Will he find a niche? Bring to light some singular achievement, expression, invention, work or art or technology? Maybe. Is the possibility of that taken away if the core deficits present in all those on the spectrum are ameliorated and even eliminated through remediation? I doubt it.

I wonder why this irks me so, because it really does--the idea that if you remediate the autism, you remove the gifts and rob children of their identity. What also irks me is the list of names that I found doing a google search “Famous people with Aspergers”. Here are some of them:

Jane Austen
Béla Bartók
Ludwig van Beethoven
Alexander Graham Bell
Emily Dickinson
Thomas Edison
Henry Ford    
Thomas Jefferson
Carl Jung
Franz Kafka 
Wasily Kandinsky   
Wolfgang Amadeus Mozart
Isaac Newton
Friedrich Nietzsche
Bertrand Russell
George Bernard Shaw
Henry Thoreau
Mark Twain
Vincent Van Gogh
John Denver
Jim Henson
Alfred Hitchcock
Howard Hughes
Andy Kaufman
Charles Schulz
Andy Warhol
Woody Allen
Bob Dylan
Bill Gates
Al Gore
Michael Jackson
Garrison Keillor
Keanu Reeves
Oliver Sacks   
James Taylor

People: get a grip.

Does it begin to sound a teeny bit like those spoofs of darling Shirley Maclaine out there on her limb? Wherein, for a time, everyone discovered they had been Joan of Arc or Cleopatra or Mary Queen of Scots during past life regression therapy?

We all have autistic traits and tendencies. We all have sparks of genus. We all have untapped power, potential and vision.

When my son yells, ‘get out, go away” to a boy who trots by him at the playground, I know what I know by mothering with my heart. I don’t need to read a memoir to imagine what it must feel like to him. I know he’s not feeling right, safe, centered. And I know I want to do what I can so that he has the chance of experiencing life on the playground as fun, interesting, enjoyable.

Is there any mother out there not doing this? Not motivated by the same thing? Please help me with this; I really want to know. For those of you who are calling for greater acceptance, for a wider embrace of our differences as human beings, for a matter of fact inclusion of all personality types, learning styles, neurological landscape, for slashing ‘normal’ from our vocabulary, for valuing everything along the actual spectrum of minds out there, I say, yes! yes! a million times yes! And while we’re at it, let’s also remediate the autism.

I’ve been engaged in my own very personal story for most of the last year and a half. When I first started blogging I didn’t know of one other autism blog. I was too absorbed in what was going on within the walls of my home and those of my mind and heart. I know of many now because they found me and then I found more of them and I’m glad for that. I try to add every autism blog link to my sidebar. If I’ve neglected to include yours, please let me know. We need voices. We need connection and community. We need each others’ stories.

The politics of autism are explosive. There are many different views on autism beginning with whether or not autism and treatment are two words that belong together. Maybe I add ammunition by my position. Maybe I fan the flames. But I tell you this: I would never tell a grown person that they ought to be some other way, that they are wrong or in need of fixing, unless of course, they are my husband. We each have to find our own way in this world and I have the deepest admiration for the journey.

As a mother of a small child with a neurologic difference, a difference that I witness impacts him every day, that separates him from others, that distorts his self-image, the impedes what would be his natural feeling of competence and confidence, I am pulled not toward books on autism, but to books on human development. I want to maximize his own potential. He is my son. I want to help him build a solid hull, fit it with mast, tiller, rudder, keel, the proper ballast, and sails. And then I want to watch from the shore as he sets out on his own.

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[LadyB]

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[Adonya Wong]

You are my new BFF!

My son was diagnosed in '05. I wish I had known about blogging back then because I probably would have come across your blog sooner vs. later.

Either way, I'm wicked glad I did, and I have www.SusanSenator.com to thank for the introduction.

Looking forward to catching up on your posts.

Adonya Wong
Author | Autism Activist | Blogger | Mom

www.throughtheeyesofautism.wordpress.com

[MommyGuilt]

Hey lady -

I've been reading everyone's comments (backwards, apparently), and it seems as though there's a pretty mixed opinion on "the list", but that there is general agreement on...hey, your the mom, you know your child best theory. Ain't that the truth?

Personally, I use the list to help SmallBoy (and stupid Ex) discover that ASDs are NOT disabilities, that he is not LIMITED by the Asperger's. He is a total computer/video game geek. When I told him about Gates and Einstein, he thought it was incredibly cool, first of all that there were grown-ups like him and, that they've done some really awesome things, including in his interest areas.

I don't know who made the comment about Bert, but WOW! Looking back - I would definitely say Bert had some Aspie traits. But that's neither here nor there.

Kyra you and Fluffy have made astounding leaps and bounds. You keep doing what works for you and we'll keep feeding off of you...like little sponges soaking up all of your feedback! You are an awesome mom!

[Kristen]

The famous people list is ridiculous. "Don't worry - your kid could grow up to be the next Thomas Edison!" Would they say about a kid with a physical disorder "don't worry about that pesky limp! If you let him walk more easily he'll LOSE something about himself!" Of course Fluffy's condition has shaped who he is, but that core doesn't go away by teaching him how to manage it and how to get along in the world as successfully as possible - just like when I teach my kid (with no official "diagnosis" of anything) how to manage his intensity in social situations, I'm not changing who he IS, but how he interacts with the world. All parents have to do this! Diagnosis or not.

Great post...

[Laura]

Also, Michael Jackson? Ewww.

[Laura]

My very favorite person (or muppet, as it were) with supposed Asperger's is Bert. He is very particular about the way he likes things, he often has difficulty with social relationships, and he focuses on very specific interests: birds and paper clips. When I feel like all this hoopla is getting me down, I think of Bert. It makes me smile.

In regards to the rest of your post, I agree with you 100%. I would not ever try to cure G. I love her for the way she is, but without the interventions we have done and continue to do, she would not be able to function in neurotypical society. Fitting in is not important - being happy and able to navigate that world is. And I do believe remediation is possible as well. You are a wonderful writer and capture so many thoughts and feelings so eloquently. Thank you.

[Estee]

I agree with teaching methods -- helping our kids, people with autism in a way they want to be helped. We have to help them achieve competence. Agree with you whole-heartedly.

HOWEVER, semantics reflects thought. I have to remind myself all the time, "whose interest am I serving here?" I often think it's a personal need -- having Adam and I meet somewhere in the middle of our two worlds.

We must always pay attention to semantics and how we think about difference as it reflects what or how we might teach our children.

I do not disagree with your argument. Hopefully just adding food for thought.

Estee

[Lora]

I'm with Felicity, I have nothing brillant to say but what an awesome post. Your words are so powerful and significant. Thank you as always for sharing your experience and words of wisdom and thank you for your helpful suggestions on my blog.

[Vick Forman]

Right on Kyra. These kids have honest, genuine difficulties. Their struggles are real, as are those of their families (especially their mothers, thank you very much). To say we are all the "same" is to ignore this very real struggle.

Yesterday a friend asked, quite in earnest, if my non verbal five year old ex super duper multiply disabled preemie "makes his needs known". My typical eight year old daughter was there and I turned to her. "What do you think?" I asked, to which she replied, "um, not really." It would be lovely to hold fast to our fantasies that these kids turn out, as I was told at Evan's birth "just fine." That they "make their needs known". That their mothers, with fierce mother love can make a difference. That our parent instincts don't go into a deep, gut feeling-less void. That is a fantasy for the normals, not for us. We know what it's really like, just as we know that Dan Ackroyd doesn't have autism.

Bless you... My bones are rattling, and in the very best way.

[kyra]

i respectfully disagree with you, estee, on a couple of points. i don't think the debate is about acceptance, as i do accept my son and don't believe that working on remediation contradicts this.i also know that remediation IS possible. kids have come off the spectrum through many avenues. i don't need my son to not have asperger's to be happy or to accept him, but if changes to the way i play and AM with him results in new neural pathways forming that allow for greater flexibility and a feeling of greater competency and confidence, i'm all for that. in fact, it's not different than what parents do with their NT kids ALL THE TIME and without thinking. in the case of ASD kids, you have to think it through, do it more slowly, more deliberately, but in the end it's the same thing--it's shaping a mind, helping your child make sense of the world they live in. all i'm saying is, why WOULD"T WE DO THAT WITH OUR ASD KIDS? that is what the debate is about for me.

[Estee]

"Remediate the autism"

Good luck. Autism stays with a person for life. While we are all trying to help our children be the best they can be (autism or not), autism cannot be remediated. Sorry. Read today's Globe and Mail article on my blog -- Michelle Dawson and Dr. Laurent Mottron are working together. A scientist has finally figured this out. And both were ont the front page of Canada's national newspaper today. Finally.

This debate is about acceptance. It is about regarding anyone with a disability as a sentiant, capable being, no matter how differently they learn, express or interperet the world.

It would be nice if the world could really accept difference instead of playing lip service to it. You can't sit on both sides of the fence. I know it makes uncertain parents sometimes more comfortable in doing so, but hey, this issue ain't comfortable.

Estee
http://joyofautism.blogspot.com

[Kim]

Hi there,
Found your blog a while back and have been hooked. I'm a mom to a 4.7 y/o currently being evaluated for AS, as well as a professional working with kids on the spectrum (I'm a licensed creative arts therapist/registed drama therapist). I completely get where you're coming from, here. But I think that sometimes parents want to know that their kids have the potential to be great, despite their difficulties. At least that's what I hear from parents whose kids I treat, not directly, but that's what drives their questions and comments, I believe. I ran a mental health program in NYC for many years, and there we had a poster that listed all the famous people with mental illness (many of the names on your list were on that poster!) and to be honest, at first I wasn't too fond of it. But it really did give hope to a lot of people that came through our doors - people with serious persistant mental illness (schiziphrenia, bi-polar disorder, etc) who gave themselves the chance to discover their own creativity and talents (with lots of the right supports). So the remediation,in this case, helped people to find their ability to shine - and that's what's at the core, not the illness.
Thanks for the thoughts...
Kim