I see that one of my favorite autism writers Michael Carley is at it again
Carley, an anti-cure member of the neurodiversity movement, is best known for his statements that Autistics universally don't want a cure in his book Autism from the Inside Out, also opposing a cure on an NPR show and then on a subsequent NPR program stated that he didn't want Asperger's eliminated as a DSM diagnosis because if he were called autistic that means he'd be lumped in with "head bangers" and "diaper wearers". He was one of the leaders of circulating a petition to not have AS removed from the DSM which did not succeed.
Carley is now topping himself in his most recent post on Suzanne Wright's death. Even posthumously, he seems to want to disparage the woman who cofounded the organization that he hates so much rather than expressing condolences for her untimely demise. Nowhere does he express sympathy for this woman who died of cancer before reaching her 70th birthday. Though I've disagreed with Autism speaks on many issues, I still expressed sadness at Ms. Wright's passing.
Carley starts out his piece with braggadocio about how he started GRASP and how large it is and how in 2003 no one would think that autistics would be this capable:
As most of my readers know, I founded GRASP in 2003. GRASP was the
world’s largest membership organization for adults on the spectrum.
Back then, even just the thought of such an organization (‘There are adults on the spectrum? They want to be thought of as capable? And they can run their own organizations?”) was taking off…until 2005 when the behemoth called “Autism Speaks” entered the scene.
I have news for Mr. Carley, Jerry Newport, myself, and others started AGUA (Adult Gathering United Autistic) back in 1993, ten years before he started GRASP and probably about seven years before Carley had even heard of autism. It's still in existence 23 years later. We were probably the first adults to start an organization like that, though Jim Sinclair's ANI (Autism Network International) may have started around the same time. (you also missed that Mike, if you happen to read this).
Carley continues, blaming parents of lower functioning children for internet flame wars:
Now back then, families of significantly-challenged spectrumites somehow
felt justified in lashing out at those on the end of the spectrum that
were better able to mirror greater society—those of us they bitterly
referred to as “higher functioning.
Neurodiversity has a history of almost always being the aggressors in these debates, equating parents they disagreed with as Nazis as Martjin Dekker did, equating them with the KKK as Noah Britton and bloggers Kowalski and Turner did. And suggesting parents don't know what's best or will do things out of convenience rather than love for their children as John Elder Robison has. With the exception of John Best and Lenny Schaefer, no parent of an autistic children has leveled harsh unprovoked rhetoric against those on the other side. Harold Doherty and autism's jabberwocky MJ refuted neurodiversity, but always with tempered rhetoric. He just wants to lash out at a few parents who may not have turned the other cheek in internet flame wars that he and other members of ND started.
Rightly or not, Suzanne believed that her toddler grandson, who also
suffered from stomach pain, was crying out for her to go to war for him.
So to war she went; never wavering, never
compromising.
Carley conveniently forgets the articles of understanding discussion he had with Allison Tepper Singer who at the time worked for autism speaks. Not to mention he is not omniscient and can't possibly know the intentions of ms. wright or her grandson.
On our side of the ideological border, where the voices of acceptance,
and education lay, people like Ari Ne’eman and myself were given
enormous faith, and respect by our constituencies. But we were not loved
anywhere near the way Suzanne was loved
One possible explanation that did not occur to Carley was that though Suzanne Wright often espoused harsh rhetoric to explain what a horrible disability autism was and that neurodiversity found that offensive, she never insulted people far more disabled (assuming Carley's disabled at all) by stating they did not want to be lumped in with headbangers and diaper wearers and stating that people who supported autism speaks were morally complicit with murder as Ne'eman did.
Bob and Suzanne had terrible, perhaps even manipulative, opportunistic
advisors when they started Autism Speaks, and that is why they got off
on such a terrible foot (though the fact that they made this regretful
course irreversible, lies on them).
Yeah, right, that's why Autism Speaks has raised tens of millions of dollars and is the best known private funder of autism research (even if Simons is larger they are less well known) or if Carley means they got off on a terrible foot in that they used harsh rhetoric that neurodiversity did not like, then somehow I don't think that's true.
Carley then makes personal statements about Ms. Wright's life, about her being a policeman's daughter and making analyses of their stable marriage of decades, since Carley's first marriage did not work out and he was able to have a second whereas most autistics, myself included, will have none. (I won't paste Carley's remarks here)
Autism is not life or death.
Yeah that's why autistic people have a life expectancy 18 years lower on average than nonautistics, though Carley is functional enough so that it probably won't affect his longevity.
Carley makes statements about Ms. Wright's working class socioeconomic background, trying to claim that those qualities made her some sort of gutter fighter and that is the reason that neurodiversity has not done as well as autism speaks or against them as they could had Ms. Wright had been born into wealth. He encourages neurodiversity proponents to model Ms. Wright's sterling qualities to provoke more flame wars against parents who want to help their autistic children live better lives.
I believe using someone's death as a demagogic attempt to incite more inflammatory rhetoric from neurodiversity and to bait people into starting more flame wars and fighting parents of autistic children who want a better life for their kids is in extremely poor taste.
Maybe I should not have written this blog post but Carley kind of makes my blood boil.
"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.
ReplyDeleteI will probably extensively promote this post.
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.
ReplyDeleteI 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.
ReplyDeletethanks 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.
ReplyDeleteIt'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.
ReplyDeleteI 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.
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.
ReplyDeleteDeena, 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.
ReplyDeleteThat 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.
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.
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.
ReplyDeleteOn 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.
@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.
ReplyDeleteI 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.
https://www.youtube.com/watch?v=iQExgALv9wI
ReplyDeleteWhen 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!"
"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."
ReplyDeleteIn 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)
"whereas most autistics, myself included, will have none."
ReplyDeleteeven 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.
@ anonymous 3:45, I doubt that arranged marriages are very common if not non-existent in 21st century western nations.
ReplyDeleteYou didn't specify only in the western nations.
ReplyDeleteMeanwhile, 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).
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.
ReplyDelete