Outside the Activists

Ari and members of ASAN deserve credit for trying to increase awareness of adults with autism and their unique needs. They are voices that should be heard. But, what of adults with autism spectrum disorders who disagree with some dominant ASAN positions? It often felt those were not only unwelcome, but disliked by ASAN members.

Understand: I encourage people to learn about ASAN and know that it is serving an important purpose. If your personality is suited for it, I think ASAN would benefit from gaining more members who can work within an activist organization. I'm definitely more restrained in my mindset. I'm also not aligned with the dominant political views of ASAN members, which was uncomfortable.

Over time, ASAN will evolve and I have great hope that it will develop into an organization with divergent views. Ideally, there will be a realization that we want services, supports, and tolerance. Not all autistic people share the same views on autism.

At the Autism Society of America conference there was a Townhall of People on the Spectrum. (I might have that title incorrect, but the concept is clear.) I won't reveal names or give any direct statements, but I want to explain my personal reaction to some of the thoughts expressed in the Townhall and during ASA. These views reflected some of the statements I read on the ASAN mailing list, before I left the list. I do not know which people at ASA were or were not ASAN members, so do not assume these comments are universal.

1) Autism is a gift, not a disorder.

I do consider myself disabled. I am not "gifted" with autism, palsy, migraines, or social anxiety. Autism is not a blessing, nor is it a minor difference. For me, it is crippling to be so sensitive to stimuli. It is crippling, socially, to not understand people. Just as I cannot deny my right arm is atrophied from a palsy, I cannot deny I have "social atrophy" caused by whatever is different in my wiring. I have talents that might be associated with my neurology, but I'm not sure they outweigh the skills I lack. Everyone feels that way sometimes, I suppose. I dislike being "autistic" on the bad days. (I do not "embrace" my autism, but I also never embraced my other limitations.)

I don't like the word "disorder" in ASD and wish something else were used. "Autism" by itself seems much better than "ASD" since that includes the disorder. I also don't care for the "spectrum" language, but have nothing better to offer. I do think my needs and experiences differ from those of people I have met with classic autism.

2) The families searching for a cure are wrong and selfish.

I cannot say that. I have no idea if it is wrong or not because I'm not a parent. Kanner's autism (classic autism) is horrible. Don't try to argue that the child with a bloody and bruised forehead, bleeding fingers, and missing clumps of hair is simply an example of diversity. I can't imagine the exhaustion the parents feel trying to protect a child engaging in self-injurious behaviors to that extreme. I doubt I'd sleep at night. Who am I to tell parents who spend every waking moment protecting their children that they are wrong to want a cure for these symptoms, at the very least?

Parents seeking a cure are not all selfish. Some are, I am sure, because they want a "normal" child. Others simply fear that their children will be harmed or will harm themselves. These parents don't want a cure simply for reasons of ego -- they want a cure because they wonder what will happen after the child is "alone" in the world. Maybe the fears reflect shortcomings in how we care for people as a society, but the parents have to deal with how life is, not how it should be.

3) Protests have to be loud.

No, they don't. You don't need to destroy books, yell at managers of Toys R Us, or picket against Autism Speaks to be an effective self-advocate. In fact, many forms of loud protest feed the worst stereotypes about autism. Those of us who would rather see teach-ins and peaceful protests are not accepting the way things are, but we have chosen a different path towards change. Riots didn't always help in the 1960s, 70s, or even 80s. I know, because I was in Los Angeles during the Rodney King affair. All the violence did was reinforce ignorant stereotypes and destroy good people. I realize self-advocates aren't calling for riots, but my point is that disruptive behavior seldom changes hearts and minds. I choose a different path.

4) Certain people are traitors.

Actually, I have read and heard worse than "traitor" used for these people with autism who have chosen to work within some organizations or research areas. They are not "traitors" or even "self-loathing" autistics. Someone compared a writer with autism to being a gay evangelical opposed to gay rights or even seeking to cure homosexuality. That's hyperbole, I hope. I think there are people, like myself, who simply do hope that education and cooperation is more helpful over the long-term than shouting and getting angry.

5) The medical establishment (especially the mental health establishment) is our enemy.

Yes, I heard the word "enemy" used. I'm torn on this. There is no doubt that psychology has a history of misuse, and I have written about that. But, I think most people in the medical and mental health professions are well-intentioned and would listen to people with autism if we engaged the professionals in a polite and reasonable manner. If we could put our views into words, explaining there are a variety of views within the autism community and those views deserve respect and consideration, things might improve between clinicians, researchers, and people with autism.

These are simply my views. I want a nice, quiet, logical discussion of how to pursue equal opportunities for individuals with autism. I'm not a radical protester, and I understand that about myself. Anger might be justified, but I cannot function when angry or when around angry people. I don't know why, but strong emotions overwhelm me and lead to a "flight" reaction. I leave tense situations.

Again, I appreciate ASAN and all self-advocates. I simply think it would be best if we all demonstrated more tolerance and understanding. Some people are wrong; I'm not claiming all views are equal or even reasonable. But, education and rational discussion might help correct those people who are mistaken about what it means to be a person with autism.

Let us all learn to embrace not only physical and emotional differences, but also variety of opinion. After all, my views might be incorrect, too.