Monday, October 12, 2009

Some medical advocacy groups fight FOR the cure. We autistics are unique - we fight ABOUT it.

Our society is confronting many serious, chronic medical issues, including AIDS, diabetes, obesity, cancer, Alzheimer’s, MS, heart disease, and autism. What do all those conditions have in common? Every one is something you live with for a long period of time; in some cases all your life. Furthermore, every one has one or more strong advocacy organizations who speak for people affected by the condition.

What makes autism unique?

I’ll tell you. Autism is the one medical condition I can think of where no one can agree on the legitimacy of any of its so-called advocacy groups. Why is that, and what does it mean? The recent Autism Speaks video debacle and the continuing controversy over neurodiversity and a “cure” makes me think this is something worth talking about.

The problem starts with autism itself, and how people see it. Unlike cancer and most other medical issues in the news, autism is a stable neurological difference. It’s not a progressive disease. At the same time, autism’s impact on people varies tremendously. Some people are totally disabled which others are merely eccentric. It’s no surprise that the individuals at the two extremes would have totally opposite views of their condition.

The “High Functioning” autistic group says, “We don’t need to be cured. We just need tolerance and understanding.”

The Highly Impaired group says, “Enough with the understanding! We need some cures, fast!”

Parents of affected kids say, “I want my kid to have a good life, whatever that means or takes.”

To a large extent, those points of view are mutually exclusive. HF people tend to see the HI desire for a cure as an indictment of their very being. “Get rid of autistic disability” morphs into “get rid of people like me,” in their minds. From the HI perspective, the desire for tolerance and the HF statement that, “we are fine the way we are,” seems to be a callous dismissal of their very real disabilities.

Unfortunately, each person who’s touched by autism thinks his autism experience is representative of everyone else’s. And why wouldn’t he? That’s how it is with most other medical conditions. Within reason, my broken leg is like yours. So’s my flu, or even my bypass operation, should I ever have one. Some of us have complications and we do better or worse, but there is indeed a common shared experience.

Autism, by virtue of its diversity, is totally different. Unless he makes a point to study nonverbal autistic life, a high functioning Aspergian will have no concept of life at the other end of the spectrum. And of course the opposite is true too. This misunderstanding is compounded by autism itself, as one characteristic of our condition is an inability to put oneself in another person’s shoes. So conflict is bound to arise.

And then there’s the conflict with the parents. They say, “My kid has this terrible condition,” and high functioning adults see that as an indictment of themselves. After all, they live with the so-called “terrible condition” every day.

What can we do to resolve this strife? I have a fairly simple solution.

First, stop talking about a “cure for autism,” and, “getting rid of autism.”

Second, talk about finding fixes for specific components of autistic disability, like speech impairment.

We should all be able to agree that the ability to talk is a good human trait. So is the ability to eat whatever you want, without getting sick. Therefore, we should be able to agree that therapies that allow autistic people who couldn’t do those things in the past to do them in the future are good. We'd get a long way if we tackled each disability component of autism in this way. Not every one of us is affected by each thing, but the sum total would touch us all in some way.

It seems to me that one change in focus could go a long way to resolve the controversy.

The other thing we all need is some tolerance for differing views. For example, I may see some benefits and some disabilities to my own high functioning autism. There are other people who see zero benefit and much handicap to autism in themselves. Both of us deserve the right to hold our differing opinions and live our lives in peace. There is no reason that can’t happen, though you’d never know it to read many of today’s blogs and articles on the topic.

I certainly recognize the solution is more than my simple two steps. There are still some major ethical questions remaining. For example, who should decide if a treatment or therapy should be given to a person who can’t advocate for himself? Those are the issues our advocacy groups should tackle together, rather than fighting with each other. That's one question; there are many more.

There are also some emotion-charged controversies like the vaccine question that can only be solved by the advance of science. Of course, both sides will say, “The question is solved, my way!” but the lack of consensus suggests it’s far from resolution. That said, it does not have to tear the community apart the way it does today.

When you count the autistic population, plus our families, teachers, and caregivers, there are many millions of people affected by autism in the United States alone. Most of us are just individuals, with little ability to advocate for ourselves regionally or nationally or in some cases, even locally. We NEED strong advocacy organizations to play this role; organizations we can all embrace and get behind.

Can today’s autism advocacy groups embrace this concept? Time will tell.

Until they do, I am sorry to say, none of them speak for me. I know I am not alone in that somewhat cynical view. And that’s a sorry state of affairs for advocacy groups who are supposed to look out for the interests of all people on the spectrum.

14 comments:

Izgad said...

From my experience people who are high functioning have no problem acknowledging that there are people on the spectrum have real problems and require help. The problem is that there are people, like Hating Autism for example, who either deny that people who are high functioning are actually on the autism spectrum or claim that we really are sick; so sick in fact that we do not realize that we are sick and must therefore be handed over to the care of neurotypicals who will try to cure us.
If we are going to change the conversation to curing specific problems relating to people on the spectrum than we need to put an end to this language of “curing autism” and acknowledge that autism in of itself is a problem.

Eric said...

This has been one of the best blogs that I have seen in a long time regarding this issue. I've had responses ranging from "Oh, you have Aspergers? Well, you're high functioning, you wouldn't understand what real autism is" to "What's Aspergers?" The sad thing about that second remark is that it came from my Pastor who also has a degree in Psychology. It's only been through blogs like yours John and friends that I have met; who either have Aspergers or have family member who have it, that I have been able to communicate what I go through or have gone through.
As for 'curing' Autism, forget it. Lets concentrate on the individual issues that come with each stage of Autism, and make it easier for the individual or his/her family members to live with it. The more communication between the groups, the better.

Ghost said...

Right on! I don't mind being able to focus intensely on something for hours at a time, but I would love to be able to hear well enough in a restaurant to hold a conversation, like normal people. If we could stop saying "cure autism" and instead say "find effective treatments for central auditory processing disorder and other autism-linked neurological disorders" -- there's a cause I could support :) I suspect people stick with "cure autism" because it doesn't take so long to type.

kevathens said...

I feel similarly about the Human Rights Campaign. I'm not gung-ho about them, but hey, go for it!

Baloney said...

I'm so glad you posted this. I totally agree. Well said.

mama edge said...

"We should all be able to agree that the ability to talk is a good human trait. So is the ability to eat whatever you want, without getting sick. Therefore, we should be able to agree that therapies that allow autistic people who couldn’t do those things in the past to do them in the future are good."

Sounds like a mission statement for a new advocacy group, John. I'll join!

Gavin Bollard said...

I really feel that the word "Autism" is broken. It's been used incorrectly and out of context to refer to so many different things that it now has lost its meaning.

For the most part, aspergers is a good word for the HFA/Aspergers series of traits.

We probably need a bunch of other words to describe different groups (and impacts) of traits elsewhere on the spectrum.

In your leg example, it's akin to saying "my leg is sore" for...

1. An itchy leg
2. A cut or graze on the leg
3. A broken leg
4. A completely missing (shark-eaten) leg.

One definition really can't cover it all.

cath c said...

i have felt this way about the advocacy groups ever since my son's initial pdd-nos dx when he was 2.9yo.

i think some of the problem with disagreements within the autism community is due to one major symptom: rigidity. tough to convince someone with autism that other colors in the sky are possible when they are certain the sky is blue.

Kanani said...

Bravo.
I've never understood "cure" or "ridding" autism.

Now, what I do understand is informing people to gain acceptance of a way of being.

And what I also understand is to help Aspergians cope with the world at large.

I also advocate for a strong system of support that includes a wide range of services that address the emotional, physical, social and financial issues that both the Aspergian and their parents or spouses experience.

But it has always seemed to me that "cure" or "rid" were very easy (and perhaps a cop out) way of taking a short cut to a deeper, meaningful and accepting understanding.

So, if we're talking about "healing," I think we're speaking first and foremost about a spiritual and emotional healing. Which includes a lot of related issues like acceptance, love, and encouragement over the long haul. But in order for this to happen, both sides need to listen. Because in truth, the neurotypical who enters into the picture either as a parent or spouse is quickly consumed by a lot of contrasting messages. So yup, it's a big big picture that needs to be sketched.

jess wilson said...

I wish I had time to write more, but for now this will have to suffice ... AMEN, my friend. AMEN

Niall_Moffat said...

my name is Niall. i am a 27 year old currently living at home and have Asperger's. i spend most of my time at my computer but i also recently started working out. ive lost all my friends and have never learned to drive. i pretty much do the same thing every day because i thought school was an option which never worked. from what i understand JE Robison is the only "successful" Aspie out there. ive tried to have relationships with girls i met at school and church but as always it didnt work out. what im wondering though is whether or not i can be successful.

Miss S. said...

Interesting post; I am not intimately familiar with the autism advocacy community, but I do notice that in general, "projecting" you own experiences as the same experience as others is an all too common problem. I agree with Gavin Bollard in that we need to rethink how we use the term "autistic". On the other hand, those who head these advocacy groups need to realize that their experience is not all encompassing. So instead of really helping anyone with any form of autism, these groups become a platform to launch some pretty self-serving publicity. It is selfish and sad. But I see no immediate fix. (Well unless Oprah wants to get involved.)

codeman38 said...

There's a bit of a false dichotomy and hasty generalization at work in your post, in the part where you claim that 'high functioning' individuals have one attitude toward autism and 'highly impaired' individuals have another.

At least on the lists and forums I participate in, I've found the attitudes to be quite varied. I've seen 'high functioning' autistics who are pro- and anti-cure, and 'highly impaired' individuals who are pro- and anti-cure. It's not even remotely as monolithic as you seem to think.

I actually dislike the terms 'high-functioning' and 'highly-impaired', incidentally, for a number of reasons. Among them is that, although I'm diagnosed on the HF end of the spectrum, I tend to find I empathize far more with the sort of people you refer to as 'highly impaired' than I do with many neurotypicals.

Patrice said...

Thank you for your blog. I have never found a resource that I thought would be helpful before now. Your honesty is appreciated. As a classroom teacher, mother and an ABA therapist in training,I am struggling with finding a way to help. My son has amazing strengths and areas that need some help like all people. I am finding that finding my balance is essential before helping him. I am hoping to find like minded persons to share with and it seems that this blog has quite a few. Thank you for writing. I am reading!