Tuesday, July 21, 2009

Can we all get along?



Just this morning I was reading a post on Autism’s Gadfly, and it made me think about the tremendously different wants and needs of people at various points on the autism spectrum.

His motto is, We don’t want no stinkin neurodiversity! We need a cure.

In my writing, I have said, I don’t need a cure; I just want compassion and understanding.

Those statements seem pretty opposite to me. Yet we are both adults with autism. How can our views be so different? That is the essence of the problem. We have the same diagnosis, but we are impacted very differently.

Too much of anything isn’t good for you. Maybe a touch of autism makes some of us creative, and gives us advantages that outweigh the components of disability. However, the fact that I am high functioning and only mildly impaired does not mean that all autistic people are like me.

I do not have speech impairment. In fact, I have unusually good speech. I don’t have digestive issues, or growth limitations, or other autism-related health problems. Yet autism has still shaped my life, in many fundamental ways, and that continues today.

I have participated in several experimental studies that measured brain parameters that correlate with autism, and I match people with far greater impairment in many key ways. So I may be less impaired but our brains still share certain essential differences.

That tells me that folks like me and Jonathan may have a lot in common neurologically, but our thinking may be miles apart based on the different ways autism has shaped our lives. When Jonathan describes the way autism affects him, he sees many disabilities and few if any offsetting gifts. I see some real components of disability in myself, but also some great gifts.

Seen from my perspective, Jonathan’s desire to cure his disability is perfectly reasonable. At the same time, I hope he can agree that my desire to live as I am and seek acceptance is reasonable too.

I look at mothers whose kids are on the spectrum and see the same thing. Kim Stagliano wants more than almost anything else for her kids to talk. She might call that a cure. Kyra Anderson is more like me, in that she wants to help her child fit in and find acceptance.

Samwick writes in to my blog, taking me to task for portraying Asperger’s as less of a disability that it is, in his eyes. Yet I don’t want to understate the potential for growth we all have. And my stories do reflect my own life on the spectrum.

All of us in the autism community should keep in mind the tremendous range of impact autism can have. When one person talks of a cure, and someone else talks neurodversity, we should recognize that those individuals may be coming from very different places.

One man’s cure seems like another’s poison.

Autism is a condition that can leave one person totally disabled while making another an eccentric genius. The problem is, the totally disabled can’t speak for themselves, and high functioning people like me can make autism appear less serious than it is, for those more impaired individuals.

When the less informed public looks at me, and thinks, “There goes a successful guy with autism,” it may create the impression that anyone on the spectrum can be equally functional. That is simply not true. Everyone can grow and improve, but some people always go farther than others.

If a person has serious speech difficulty as a consequence of autism he’s going to have a much harder time making it in American society. If he does not progress as far as someone else, that does not mean he’s lazy or stupid.

It’s very hard to maintain a balance between recognizing latent potential in people, giving them hope, while still being cognizant of the fundamental limitations autism may impose.

I just wish people could discuss these issues without the bitterness and hostility that breaks out.

26 comments:

Juliana Porto said...

Great blog.
Great writer.
Great person.

=*

ToniMay said...

Dear John Elder: I read your book and found it fascinating. I've a 48 year old AS son with an IQ of 180. He went thru school doing all the things boys do, encountering cruel adults along the way. He won a scholarship to MIT and graduated for that university. His 10 year old son, however, also AS, has been forced to be on drugs all his life, suffering all the side effects. There is nothing wrong with him except that he is AS. Unlike his father, he's been stuck in Special Ed and isolated. He has been on the anti-psychotic Risperdal for 3-1/2 years: I fear for his life, let alone his mind. The parents are divorced and share custody. The mother, who doesn't know boys, let alone little Aspies, has been able to get a Santa Cruz County psychiatrist to keep filling the scrips, dismissing all the side effects. The father has not been able to stop this madness. Do you know of other AS children so treated? Antoinette May 831-661-0432; tonimay@comcast.net

jess wilson said...

oh john, a-friggin-men.

these are emotionally charged issues to be sure. raw and often battered nerves can make it awfully difficult to see anyone else's view.

but once we delve below the hurt and the anger and start not only talking at but listening to one another, we might just find some level of understanding.

some time ago, i wrote the following .. i thought it was worth repeating here ..

‘As advocates for people with autism, we ask people to open their hearts to those who are different from themselves. We ask them for compassion and tolerance. I hope that we can interact with one another from that place – a place of tolerance and understanding and above all, respect.

I’d hate to see any of us spend what could be useful and productive energy tearing people down.’

john c. said...

John:

One of your best blogs and one of the best statements on Autism Spectrum issues I've ever read.

The term "neurodiversity" is relatively new to me. But I embrace the term and what it means.

Getting others who are "neurotypical" to accept the term and concept would go a long, long way to helping AS citizens to be accepted without the stigma of what others attach to the lives and situations because they are 'different.'

They don't need to be shunned or showered with sympathy. They do need to have their medical conditions cared for and accomodations made so they can lead a useful life as they see it.

My 24 year old Aspie son will be a sophomore at Arizona State next month, and is doing fine with some accomodations for tests.

pixiemama said...

I'm glad you went there with your blog, John.

This is a terrible, touchy subject that can end friendships in a heartbeat.

In addition to the disagreements about AS and how to deal with it, I know that among mothers of children with autism, there is something of a "survivors guilt," where those of us whose children are higher functioning feel as though we should be apologetic that are children don't have the same issues as others.

I am one of those mothers, because just like you, my son has never had a speech impairment. He actually has quite the opposite - he has always spoken with the vocabulary and articulation of a 40-year-old professor. And yet, that doesn't mean he doesn't have AS.

Beth said...

I couldn't agree more with your post. I am one of the moms who wouldn't seek to "cure" my son, even if such a thing was possible. He is moderately learning-disabled but is making progress with much support. I cherish who he is and know that he would not be the same person without AS.
However, I can empathize that, under different circumstances, I might feel differently. I would never love him less but if he were unable to communicate and experiencing severe frustration, I might fall into the "cure" camp. I try not to judge.
Thanks for your insightful posts!!

RtPt said...

I don't think there is necessarily anything that is completely curable about an ASD.

There are some therapies and medications which can hopefully aid an individual if needed. No one should have any issue with someone that needs assistance obtaining it.

The issue is about acceptance. Accept the diagnosis and the situation then see what can be done to help the individual. Some of the problem that goes along with an ASD can be dealt with but the person will always have an ASD.

If there is a correct diet, pill, therapy, etc., then fantastic. Let's investigate and prove them scientifically. But enough with the vaccine nonsense which has tainted the whole discussion.

Thomas Thomas said...

We are all so different. It is easy to place someone in a box as soon as they are classified as 'Autistic'. Of course, since it it the Autism Spectrum it is obvious (at least to me) that there is quite a bit of diversity there.

Since I have not been professionally diagnosed with Aspergers it is difficult for my family to consider it to be true. Since my older son (25) likes to argue we have had some good discussions about this. One thing he said was that by calling myself Autistic could stigmatize me in people's eyes. I think it doesn't matter, since I think that people know (at least instinctively) and I have always been stigmatized.

I don't care what people think of me. In reality a classification of Aspergers/Autism narrows the reality of who you are. Yet, it does help to focus on the issue. Maybe that is why I am content to being the only one who is sure about who I am. In looking at the Autism Spectrum I have been able to look at myself as if in a mirror when I look at different aspects of what defines someone with Autism.

After 54 years I have learned to look at life in a more positive perspective (and it was a difficult lesson since I tend towards the dark and negative). I would rather look at the way I am by seeing the positive aspects. The thing is that if I didn't look at it in a positive point of view I would find it hard to want to live. I have a few things I want to do and not living will severely hinder that prospect.

I can totally understand someone who wants to change from being autistic. Yet, by the time I looked at Aspergers and saw that this might be my experience I was glad to be me. I guess if there were a cure I would say no thank you (would that then make me more unique?)

Matt said...

it is, as they say, a spectrum...

cath c said...

excellent and compassionate words, j.e.r.

it is tough, on all of us who deal with autism every day.

i still hope for the best possible outcome for my son, an independent life as an adult. it may take him longer to get there, but i think it's possible for him. i know others are not so lucky to be able to consider the possibility.

much is sensitive around the topic of autism. thanks for your point of view.

Cheryl Kauffman said...

My daughter doesn't see her Asperger's as a disability but a gift. She just wants people to stop bullying her and accept her as she is. My heart goes out to great moms like Kim and I do think more research needs to be done to help find a cure.

Michelle S. said...

I don't know how I compare, but my son is not Aspergers, he is classic autistic. He has speech, a LOT of it, but his receptive language is way way behind. He can read a 6th grade level (going into 7th) but only understands at a 3rd. I think a lot of the time some of this line is drawn because of cognitive disabilities, but I for one, wouldn't "cure" him. He is who he is. He loves who he is and frankly people LOVE being around him. He's fun. Do I think life would be easier without the cognitive impairments he has? Sure. But there are still areas he excels at. He's only 12. He has a lot of growing to do and I for one can't wait to watch what happens.

John Elder Robison said...

For those of you who are following the discussion, here is a link to gadfly's response. It was his essay that got the whole thing going in part . . .

http://autismgadfly.blogspot.com/2009/07/john-elder-robison-gives-his-take-on.html

And if you want to read more, take a look at Samwick's thoughts in response to my "schedule of appearances" post. He too makes some worthwhile points, and I tried to address them here.

ToniMay said...

John Elder: any comment on my message? Toni May

John Elder Robison said...

Toni, I am not sure what to say in response to your question. Do I know any AS kids who are medicated to their detriment and against the wishes of the father?

Well, actually, I do not know any such kids but I know they are out there.

Do I know what to do about it? I am not sure how to answer that. It sounds deplorable, but it's more a child custody or kid management problem than an AS probelm. At least that's how I see it

Trilogy said...

John - good blog indeed.

Isn't it ironic that we lack understanding of each others positions and conditions when we seek the understanding of the rest of the world -wether we want "acceptance" or "cure"

Seems like a good time to tell you that my father died in January at age 80 - the last book he read was Look me in the Eye. He found it "most interesting" and read it eagerly and commented that he was "trying to finish it"

As he was clearly preparing for his end I understood hid eagerness to finish. It made sense to him. It made sense about who his grandson is, about who I am, and most of all it was the final word in helping settle his mind about who he was. I believe he died very peacfully and most importantly at peace with himself, knowing finally why he was who he was and knowing we would be okay too.

Knowledge is power.

Trilogy said...
This comment has been removed by the author.
Amanda said...

Well in my humble opinion the way a person on the autistic spectrum feels about the way they are will have a lot to do with the way they are brought up and nurtured by their family. Yep, I'd say the thing Kim would do absolutely anything for would be for her girls to talk but along the way I'm also certain they won't feel less worthy for their communication difficulties. Their successes will be celebrated and they'll get all the help Kim can get them to address everything else. In that we're the same, she and I, but in the cure or not issue we're different. I say a cure of autism is not possible due to it being an organic brain dysfunction. You could no more cure it than grow a leg where there was none before. However, you can alleviate the symptoms, making the impact negligible, and that's something we all want.

While I'm coaxing my girls to spend a little more time in my world and a little less in theirs it would really help if the world would be a place they would want to be in.

This morning a severely autistic boy, the son of a friend, said "Manda help seat belt" because he couldn't get his belt done up in the car on the way to holiday club. I'm walking on air and grinning from ear to ear. He said my name to get my attention. Nothing beats the feeling!

RtPt said...

Amanda

Your post is spot on.

Stimey said...

Hear! Hear! When I first started reading autism blogs they scared me to death, specifically because of the vitriol that was spit around by various factions. I also just want us all to get along. This is a wonderful post. I think it is okay for people to have differences, but still respect each other.

ToniMay said...

Thanks, John Elder. You answered my question. I've not read of any AS children so drugged as my grandson. His father was never on drugs. The drug Risperdal which he's been on unnecessarily for 3-1/2 years has caused the deaths of 31 (known) children. Toni

John Elder Robison said...

Thanks for all your responses. I have written a new blog post to expand on these thoughts

Lori B said...

Great post John. Nice to see someone looking at things from different perspectives. Seems like the rift between cure vs. no cure is becoming more like a war within the community. I know there are good reasons for that, but I think it is also important to look at the bigger picture like you did.

Jane said...

Dear John Elder,
Thank you so much for writing your book. It is helping me understand my brother better. He has never been "officially diagnosed" but has always been in a world of his own. He is very bright, a robotics engineer, does very well with machines and repairing and building things but has difficulty in relating to and dealing with other people, preferring they leave him alone.
He has very few friends and I worry about him. At least I feel like I understand more now. Thanks again.
Kat

kiki mom said...

John also wanted to let you know not only is my son Alex ans Aspie but so is my husband. Life in our home can appear to be very dysfunctional however we come together when we need to be together and we go off to our separate corners as needed. We may not always communicate well but we do so to the best of our abilities. Isn't that the key doing your best, being your best?? Yet as a mother and wife I want so much more for them, I am warn out trying to be the buffer in a very confusing world.

We could use a friend, and Alex could use a mentor.....

Lai Ming said...

wow. thanks for this. I wrote my first post on your facebook wall today, then felt I had to return to explain myself after mentioning that the treatments I implemented with my son took him from sever to high functioning. because of the pain and tention in this nation right now, I feared a shit storm if I even implied that I wanted to "cure" my son's autism!