Tuesday, January 4, 2011

My beliefs about autism, research and more . . .




In a recent article on About.Com, Lisa Jo Rudy asks who, if anyone, should speak for the autism community. That raises the question . . . speak to whom? And for what goal?

Throughout history, when we read of “speaking for xxxxx,” it’s in reference to some oppressed or marginalized group, whose cause is advanced before a reluctant government or church.

For example:

Who speaks for the Arab population in Israel?

Who speaks for Gay soldiers in the Armed Forces?

Who speaks for migrant workers in California?

In almost every case, someone “speaks up” to obtain some semblance of wage or life equality for the oppressed group. I do not see myself as such a spokesperson. I’m not political, nor am I any kind of activist. That said, I am aware that I have a good many readers. So whatever you call my activity, I’ve got an opportunity to speak out for what I believe in.

So what do I believe in? I thought it might be appropriate to use this column to state some of my beliefs, which are always subject to change as my knowledge grows and I continue to evolve . . .

First of all, I recognize that the autism spectrum is very broad, encompassing verbal, commercially successful, eccentric geeks at one end and non-verbal, unemployed, disabled individuals at the other. There is a broad range of humanity between those two extremes, and their wants and needs are not only different, they are often mutually exclusive.

I believe some in the autism community waste a great deal of time arguing for or against the concept of cure. Let me state my position on “curing autism.” While I think autism is a naturally occurring brain difference, and is not “curable” in the way an infection might be cured, I believe we should develop tools to remediate autistic disability. For example, I believe we should develop ways to help non-verbal people communicate. I also think we should try to develop therapies that will minimize the impact of (for example) genetic differences that lead to autistic disability in infants.

I am very much in favor of using science to make the lives of autistic people as full and satisfying as they can be. I don’t call that a cure, but other people may use that word for the work it encompasses and I hope we can accept that idea without fighting over semantics.

At the same time, I am opposed to forcing any treatment or therapy on anyone against their will, and I am opposed to programs that lead to development of genetic tests for the purpose of abortion.

I believe all people deserve to be treated with respect, and I believe there is room in this world for many different points of view.

I think autistic people deserve the right to advocate for themselves, and make their own decisions with respect to therapy or treatment to help fit into society. That said, I understand that some autistic people cannot do this, and others need to look out for their interests.

I recognize there are many ethical dilemmas in the autism world, such as who needs a guardian and who doesn’t, or what right parents should have to choose controversial treatments for their children. I don’t have absolute answers to those questions but I’m willing to contribute to the dialogue.

I believe the medical community has a duty to search for ways to remediate the disabling aspects of autism, and I support their efforts to do that. I recognize some autistic people will embrace new therapies, while others will choose to live as they are. I believe we should respect both paths.

I think the causes and cures for autistic disability are going to be complex and hard to find. If there were easy answers, we’d have them already. I believe we need to put more money into research, while also finding family services and accommodations.

To that end, in addition to medical research, I believe psychologists and mental health professionals should develop new strategies to help autistic people succeed and be happy.

I believe employers should do more to accommodate autistic workers. Autistic people bring a unique set of skills to the workplace, along with unique challenges. I think much more can be done to help our autistic population find satisfying and meaningful employment.

At the same time, as an autistic person, I recognize that we need to learn to behave in ways that will be acceptable to the general public. Businesses should make reasonable efforts to accommodate us, but we need to take our own steps to fit into the workplace as best we can.

I believe in the power of early detection and intervention. Study after study has shown that autism’s disability is minimized through early intervention. I support research into detection and intervention in toddlers and infants.

I believe schools can do more to develop programs for autistic kids. My Aspergian son and I are both high school dropouts, and I’d like to see that sort of thing come to an end.

I believe the scope of autism therapy and treatment covered by health insurance should be dramatically expanded.

I believe autistic people should have greater representation on the governing boards of organizations that purport to serve them. I believe this to be true in both the public and private sectors.

I believe in the value of mentoring, and the value of positive role models.

I welcome your comments and thoughts

14 comments:

David Cameron Staples said...

... yes, I believe that covers just about everything. And what isn't explicit can reasonably be inferred.

TLM0000 said...

I think for the next generation or two the key is going to be in early detection and early intervention. I wish my sons teachers had felt comfortable enough to say the words when he was five. Or even better his pediatrician had been able to see it. Of course, if I had been able to afford health insurance when he was a baby perhaps we would have seen the pediatrician more often and she might have said something.

We can hope for an idealistic world of employers who will adapt their companies, and be able to spot mild autistic behaviors during an interview and know to overlook them and instead look at skills, but it's not realistic. People who are fully functioning and able to get degrees but who just can not socially interact with employers will not be able to get jobs. Perhaps though if we know how to help them as small children learn to interact socially we can start bridging that gap.
So much personality and so much talent is going to waste because we can't see paste the inablity to interact "correctly" with the outside world.

Great post.

Lisa Jo Rudy said...

thanks so much, John. am about to link to this from my blog post!

Lisa Rudy
www.autism.about.com

Kim Rossi Stagliano said...

...World without end, Amen.

Because that felt like a prayer to me. Thank you.

MarcF said...

John,
You have pretty much the most fair, reasoned perspective on these issues that I have read. Your book has been more useful to me in self-examination than the many others I have read in the past few years.

adiaryofamom said...

i love this john, i love everything about this.

and i love that you add - "which are always subject to change as my knowledge grows and I continue to evolve"

may we all continue to evolve - as individuals, as a community, as a society.

thank you for your voice, john, it's invaluable.

Landon Bryce said...

Thank you, John Elder.

I am not aware of anyone who is currently writing with greater wisdom about autism. You inspire me not only in what you say, and what you have accomplished, but in your capacity for growth.

www.couplesextherapy.co.uk said...

Hi re your comment that i am deeply concerned
high functioning as kids do not receive the proper stimulation and end up turning inward to such an extent they can't function socially - I am parent of an 11 yr old who has been out of school most of primary school and finally in an alternative school - but they believe in no intervention.Can you make suggestions about what specific strategies and interventions make a real difference. I agree that field of neuroplasticity indicates that specific deficits can be improved but most of the interventions are geared towards more autistic kids. What really makes a difference in terms of learning the emotional ropes and finding ways to engage. although in top 2 percent my son has totally given up and does simple maths for instance that totally keeps him in comfort zone.
i am doubting he will get to uni in spite of interest on science and physics and am supporting his interests in animation and maybe photography as this emerges....any help recommendations or links would be much appreciated I am in uk

www.couplesextherapy.co.uk said...

Hi re your comment that i am deeply concerned
high functioning as kids do not receive the proper stimulation and end up turning inward to such an extent they can't function socially - I am parent of an 11 yr old who has been out of school most of primary school and finally in an alternative school - but they believe in no intervention.Can you make suggestions about what specific strategies and interventions make a real difference. I agree that field of neuroplasticity indicates that specific deficits can be improved but most of the interventions are geared towards more autistic kids. What really makes a difference in terms of learning the emotional ropes and finding ways to engage. although in top 2 percent my son has totally given up and does simple maths for instance that totally keeps him in comfort zone.
i am doubting he will get to uni in spite of interest on science and physics and am supporting his interests in animation and maybe photography as this emerges....any help recommendations or links would be much appreciated I am in uk

johnw7000 said...

Great post John!
I feel that the uniqueness of people with Autism should be not looked upon as a disability, but as an ability to look at and indeed see things in a much more greater way. Through my Autism I find I have a greater focus on single tasks or subjects that 'Normal' people don't seem to have. I've found that my son has the same and even better tendencies of such. I look at this as an asset to society if used the correct way and to stop saying they have a 'disability'. I feel that without Autism the world would be in a lot worse state, for our uniqueness can never be underestimated and could/must be utilized for the benefit of all man kind. Regards, John from QLD Australia(a very wet one!!)

lordbap said...

I think you should just post and write and do everything else.

**without shame**

Why not? You're as good a candidate as any, and you are a great wrtier.

Some Random Mother said...

Fantastic, John!

Listener said...

To John (and other bloggers):

After doing extensive research, I believe that my 82 year old father has Asperger's. Having gone through many online articles, questionnaires and assessments (and having observed his behavior for 50+ years), this fits him to a T.

My two sister's and I have been trying to understand Daddy all of our lives and had a tough time growing up with him. Although we also embody many valuable lessons he bestowed on us.

I finally learned to have what I call "directed conversations" with him in which I tell him calmly upfront what I expect from him in social interactions - or merely in conversations - my sisters have not. They are too afraid of his criticism. My younger sister has written him off entirely and he is profoundly confused by this, despite my attempts to explain.

My question is this: Should I tell him? If so, how? I know he won't go to a doctor. I can't help but feel that information on this might at least put his mind and heart at ease somewhat. He has gone through his life in a state of emotional anxiety and does not know why. He trusts me and I feel sad for him. I don't want to hurt him.

I bought your book and am really enjoying it. The comparison is also eerily on-the-mark in terms of what both of you faced growing up.

Anyone else who would care to respond? Your comments would be greatly appreciated.

Thank you so much for your candid discussion of your life.

Some Random Mother said...

Listner,

I think it's a tricky thing to self-diagnose and although this information may have helped you to better understand your father and accept his ways I think you may need to pause and ask yourself a very important question. "Who would be served by this conversation, you or him?"

If you can not say with 100% certaintity that it would only help and support your father to hear that you think he may be Autistic than it may be better to let the conversation pass. Use what you have learned to help you communicate with him and allow that knowledge to improve your relationship.