Friday, August 5, 2016



















Autism is not life or death.






Yuval Levental said...

"Suzanne to us, as spectrum participants in the spectrum wars, was uneducated love bestowed with immense power." And yet Michael John Carley himself didn't want to be a headbanger.

I will probably extensively promote this post.

jonathan said...

No one wants to be a head banger, nothing wrong with that, Carley just didn't want to call himself autistic because he didn't want to be lumped in with headbangers and diaper wearers. You can promote it if you want, but hopefully people won't think we're the same person. Some people on reddit and other places won't believe it, but you and I both know we're both two different people.

Robin Cain said...

I love your passion and commitment in defense of those who maybe can't speak for themselves, Jonathan. Though I'm not familiar with the people you mention, it's obvious you are very involved in trying to make a difference. Good for you.

jonathan said...

thanks for reading my blog robin, though i know you're not interested in autism and i have not been in the writer's workshop in a while, but hope all is well in your life.

lurker said...

It's stunning that some of these "self-advocates" come close to acknowledging functioning disparities, only to shamelessly distort and deny them in their statements. A lot of those involved in this issue who have interacted with the anti-cure crowd with disagreement, haven't usually approached it in a highly effective way. They seem to be under the impression that the "diversity" proponents have good intentions, that they just don't understand that other autistics have intense and intrusive disabilities, like that is what leads to their twisted and outrageous ideas. So they try to be nice, to reason with them, and even placate them as they can in their professional or personal positions.
I wonder if they will realize it hasn't resulted in a compromise from those who initially castigated them, that some who encounter this extreme ideology go with a public acceptance of complete indoctrination and go along with the program, while other entities like Autism Speaks try to appease them even though the condemnation of them by rabble rousers continues unabated. I think those who are confronted by these malicious characters with a regressive agenda, should respond with no less vitriol, not back down, and offer no absurd concessions.

Dena said...

I too, felt the timing and lack of sympathy was insensitive here. I do have to say though, I disagree in small part with your statement that "no parent has..." about attacking self-advocates. Simply stating that my son and I are both autistic resulted in one parent spitting a rejection at that in the most hostile manner at the Senate hearings. At a recent meeting at the GAO on transition, one parent said she wished that "her ....[son's name] could only become like me some day" clearly disregarding an entire day of tearful, heart wrenching sharing of my personal history of vulnerability, abuse, assault and near homelessness. That said, I wholeheartedly agree that we must find solutions for the most severely affected and support the less obviously disabled autistics toward as successful a life as possible, such that they can contribute to the overall well-being of all humanity.

jonathan said...

Deena, perhaps that parent did not know your whole story and I don't know it either. I just know you can get a ph.d. in social work, get married and support a child. I'd also heard you'd been fired from a lot of jobs allegedly due to your autism and your claim that your original diagnosis was bipolar which any competent professional should be able to differentiate from autism I would think and then being diagnosed with an ASD well into adulthood after your son was born. I can't speak for the parent who spate, but certainly the story of the parent who says he wishes your son was like you is not like members of neurodiversity calling parents nazis, claiming that autism speaks is out to deliberately exterminate autistic people and blaming parents who want a cure for the cases in which some autistic children are murdered, it's an apples and hurricane comparison.


then if that's the case then I don't understand why you participated in that despicable No Myths video with Ari Ne'eman about eight years ago in which it would seem you supported the idea that it was a myth that autism was tragedy and that the prognosis was poor for most individuals.

Aspie-Autistic1957 said...

This is how I interpreted Carley's column, she was a better person then I. Was it perfect? No, condolences should have been there as an acknowlegement of how pancreatic cancer is a hellish way to go. My view of Autism speaks success has been money and connections as well as excellent marketing strategies. That Autism Speaks supporters loved her because she was a super loving person combined with inner toughness was not something that I have thought of so Carley's column was enlightining to me and gives me things to think about.

On an unrelated topic you should not have questioned Carley's diagnoses as you seem to do with your comment "if he is really disabled" . We have too much armchair diagnosing going on both inside and outside of the community be it the you are not really autistic type or as you yourself pointed out the celebrity/historical figure is or was Autistic type.

jonathan said...

@Aspie-Autistic. I felt Carley's article went deeper than that, as he spoke of really irrelevant things such as Suzanne Wright's being a cop's daughter and not born into wealth and the Wright's have a stable marriage (unlike his own first one). He was using what he claimed were Wright's techniques in order to incite internet flame wars for neurodiversity and crusading for their causes, and using someone's death to aggrandize himself which i believe was in poor taste.

I don't know if Carley's diagnoses are legitimate or not. I remember he wrote that he was diagnosed by two different clinicians and named them. After reading his memoir, I don't understand who any responsible clinician could give him a legitimate diagnosis but I suppose there could be an explanation that I don't understand.

Anonymous said...

When a cure is found, maybe not in our lifetimes but in someone else's. I imagine this scene from LOTR when Gandalf frees Theoden. "I will draw you, autism, as poison is drawn from a wound!"

Anonymous said...


In some subcultures there's a tradition of pressuring kids to be anti-social and focus on grades alone so that they won't have enough people skills to find romantic partners themselves, arranging their marriages by choosing spouses for them according to their test scores and academic degrees instead of their compatibility, and then watching the ones who enjoy getting sex (it's easier to pressure someone into sex within marriage, especially if he or she can't run to his or her parents either because they helped arrange the marriage) without bothering to learn people skills continue the tradition in the next generation and pressure their own kids...

Maybe that's why she ignored an entire day of tearful, heart wrenching sharing of your personal history of vulnerability, abuse, assault and near homelessness (paying attention and bothering to remember what you said would take more social skills!) and wants her son to be like her (if his adult self is less able to find any girlfriend on his own, he'll certainly be less able to find a girlfriend of whom his mother doesn't approve)

Anonymous said...

"whereas most autistics, myself included, will have none."

even the ones around the world whose relatives want to arrange or even force marriages for them?

You keep forgetting that marriage and sex don't always require social skills.

jonathan said...

@ anonymous 3:45, I doubt that arranged marriages are very common if not non-existent in 21st century western nations.

Anonymous said...

You didn't specify only in the western nations.

Meanwhile, some immigrant communities and some non-immigrant ultraconservative religious communities in the Western nations do still have subcultures that still try to force marriages.

Sometimes an anti-social man even converts to some very strict version of Christianity so he can marry her after only a few dates or whatever. The shorter the time he's keeping up the façade, the easier it is and the fewer people skills he needs to convince her and/or her parents (getting to know someone over a year or more before deciding whether or not to marry him or her is against their customs).

Unknown said...

Hi Johnathan. I'm learning and understanding more than ever.
Thank you for sharing this and every other entry in your blog.

Dang Pal said...

Being autistic doesn’t mean you cant get a girlfriend or get married.Disabled people can have meaningful relationship and have sex, it all comes down to attitude and confidence. Its simple. Being in a relationship and sex doesn’t require perfect social skills.