Erasing Autism: A Controversial Question

A recent article in Newsweek Magazine summarizes the controversy surrounding Autism Research from the perspective of Ari Ne'eman, Founder of the Autistic Self-Advocacy Network and AAPD Congressional Intern.

Excerpts from Newsweek (May 2009):

Erasing Autism

Scientists are closing in on the genes linked to autism. So why is Ari Ne'eman so worried?

By Claudia Kalb

... The task [Ari Ne'eman] has taken on is daunting and controversial: he wants to change the way the world views autism. Autism is not a medical mystery that needs solving, he argues. It's a disability, yes, but it's also a different way of being, and "neurodiversity" should be accepted by society. Autistic people (he prefers this wording to "people with autism," a term many parents use, because he considers the condition intrinsic to a person's makeup) must be accommodated in the classroom and workplace and helped to live independently as adults—and he is pushing to make this happen for everyone on the spectrum. They should also be listened to. "We're having a national conversation about autism without the voices of people who should be at the center of that conversation," he says...

...Not everybody stands behind Ne'eman, and some adamantly op-pose his views. One major area of contention: scientific research, which includes the hunt for autism genes.

I knew Ne'eman had a surprising outlook on this and figured he'd have something to say about the recent news that scientists have found common gene variants that may account for up to 15 percent of all autism cases. This is big in a disorder that varies so enormously from one individual to the next. Environmental factors also play a role, but if scientists can test for specific genes—most of which have yet to be discovered—they may be able to intervene much sooner to help kids. One day they might even find a cure. This is exciting for parents who want to understand the roots of the disorder. Therapies—some helpful, some shams—vie for their attention and their pocketbooks, and they'd welcome better, more targeted treatments. But the new genetic advances concern Ne'eman. He doesn't believe autism can be, or should be, cured. His ultimate fear is this: a prenatal test for autism, leading to "eugenic elimination." If a test is developed one day, it will be used, he says. And that means people like him might cease to exist...

>>> For the Whole Article

Comment Below: The questions brought up in the Autism controversy and Ne'eman's position are ones that affect many in our  community.  Where do you stand? For a cure to restore a person to full functionality? or for valuing the disability as an integral part of the person as a whole? Are there shades of gray between these two extremes?  What are they for you?  Does it necessarily have to be an either/or scenario? Is it different for different disabilities?

Comments

[Patricia Lockwood]

I had to smile as I read this article and read about the "controversy". The same discussion has surrounded persons with Downes syndrome as well as other disabilities.

I have been lucky enough to work along side and with people with autism. Because of this positive influence I did not grieve or go woe to me when my grandson was diagnosed with autism. Instead we thought of that part of the ADA that says disability is a normal part of the life process and moved on.

We are now 2 years into the process and I realize that his autism is so much of who he is. It is an essential part of how he views the world..how he interacts with the "norms" in the neighborhood.

If we truly believe in disability rights, in acceptance of ourselves as persons with disabilities can we expect any less of a degree of acceptance by persons with autism just because their disability is more stigmatizing.

Maybe its time to put less focus on the cures and more emphasis on providing the supports needed so all can be included in our communities.

[Cory Deal]

I have to disagree. When a person is left vulnerable to every conceivable harm out there and has no voice to even tattle or complain. It is unconscionable to not try to give a voice to that person. It bothers me that a person who has a voice and has a life would try to speak for those who don’t. I absolutely love him the way he is and honor all he is with all his gifts BUT he needs the freedom of having a voice! I vote for a cure. Not a fair comparison to Down Syndrome either. I love people who happen to have that syndrome but if the syndrome impacts negatively on their quality of life, I vote for a cure. I vote for a cure to cancer, to heart disease and every malady that takes away the opportunity to lead a full life of their own choosing. If an “autistic” wants to stay that way and has a voice to make that decision – go for it! Just don’t steal another person’s right to freedom just because you think it is fun to be a little weird. My friend with autism has been robbed, abandoned, starved, beaten, and raped. He has no defense - so he is a victim. He needs a cure.

[Jon]

Empowering someone to communicate isn't a cure - it is simply empowering someone to communicate.

[TLynn]

I am a full time advocate with AS. I love who I am, and the unique gifts that Aspergers has given me. I do not see it as a malady, but something that is part of my personality. Makes me Tiffany. And I don't want anyone to take that away. But also, I work professionally with people who are on the other side of the spectrum, and I watch them suffer, and I swear, it looks like they are trapped within themselves! This may be a wee bit controversial, but I'll say this, if we could somehow improve enough to get people to fuction more along the lines of AS and HFA instead of the other side of the spectrum, perhaps that would give them a voice, and not take away from thier autistic idenity and thier unique personality and gifts.

[Anemone Cerridwen]

Maybe people with other disabilities see things differently, but when it comes to autism, autistic people generally do not believe in the possibility of a "cure". Help with specific issues, sure. But curing autism in autistic people would mean erasing the way our brains are hard-wired, which is impossible to do without causing irreparable damage to the rest of our selves. It's not as if we're broken only in a particular place: we appear to be hard wired differently at a very fundamental level.

A genetic cure for autism would involve eradicating the genes from the gene pool (if possible), by killing autistic people before we are born, thus curing the gene pool of us. So this question is not about cure, as some people with disabilities might see a cure, but eugenics. Eugenics is only controversial if you think it's open to discussion in the first place.

[Curtis Maybin]

Great stuff on autism looking forward to more.

Thanks
Curtis Maybin