Tuesday, April 30, 2019

The Concept of Cure and prevention divides the autism community: It should not have to.

Neurodiversity has completely taken over all facets of the autism discourse.  Autism speaks reversed itself saying they will no longer look for a cure or prevention of autism.  They appointed two neurodiversity proponents alleging to have autism to their board of directors.  One has said that autism is a superpower.  The other has said that autism is not a disability, but a strength.  The Simons Foundation's newsletter, Spectrum routinely publishes articles from some of the most hardcore neurodiversity proponents such as Julia Bascom, Shannon Rosa and Sara Luterman.  The U.S. Government no longer will combat autism and has appointed seven neurodiversity proponents as public members, six of them identifying as being on the autism spectrum.  As far as I know, they've appointed one anti-vaxxer, one or two parents who support the concept of prevention and cure and zero pro-cure, pro-treatment autistics, though two applied to be on the IACC and were turned down.  They also have multibillionaire George Soros on their side who has given over $300,000 to the autistic self advocacy network, the premiere neurodiversity organization in the United States.

Last, but as far as this post goes, not least, they have completely taken over the International Society of Autism Research.  Their president is Simon Baron-Cohen, a neurodiversity proponent.  On their board of directors is well-known neurodiversity proponent John Elder Robison who has recently called for an adult prevalence study and should be in the Guiness Book of World Records for writing a journal article with the most factual errors of all time.  Autism Research, INSAR's journal, published his article.

However, this is not enough for them.  In a redux of SB's BS, Simon Baron Cohen has published an article attempting to make a case for why neurodiversity is a legitimate philosophy and should not be controversial He gives a rehash of all of his old and ignorant talking points.

In trying to say that the autistic brain is a variation of normal, he again neglects to cite the findings of gliosis in Bailey's postmortem studies.   This is a response of glial cells to damage of neuronal cells, clearly a pathology and not just a different form of brain wiring.  He neglects to cite the work of Wegiel which finds heterotopias in four autistic brains and none of the controls.  This is where germinal cells fail to migrate to their proper spots during fetal development, causing seizures and other brain abnormalities.  It is no less of a normal variation than an ectopic pregnancy or inguinal hernia.

He goes on to talk about the superiority of autistics on the block design subtest of the Wechsler as showing autism to be a variation of normal, but neglects to mention the subpar scores on the comprehension subtest which results in autistics having severe social judgment impairments and getting into trouble in social situations.

In his statements about genetic variations, he neglects to discuss the research showing autism in a number of cases is the result of de novo mutations, such as the research of Jonathan Sebat demonstrates.  He neglects to discuss the evidence for environmental factors in autism such as the California twin studies and the work of Tanai in Japan showing much larger concordance in fraternal twins than in non twin siblings, even though they have the same genetic makeup. Not to mention thalidomide and various types of birth complications which have been found in association with autism.

However, these are old talking points of SB's BS and I've commented on them before

What's new is that he says the concept of neurodiversity should not be controversial, but apparently the concepts of curing autism and prevention should be.  This man who attempts to be the voice of reason  has stated  anyone who wants to cure and prevent autism is no different than a nazi or a member of the Ku Klux Klan,  Ergo, cure and prevention are controversial positions and neurodiversity is a benign thought that should have no controversy whatsoever.

He has admitted there are autistic people who can't speak and have other serious impairments.  Yet, the neurodiversity movement he emboldens has constantly insulted parents who want cures for their children or to prevent other children from going through the hell they have gone through.

Why should wanting to cure self-injurious behavior, seizures, etc. be controversial?

Even a cure for more mild problems such as the one's I've had with holding down jobs, fine motor problems, celibacy, etc is controversial?  Why should this be so?

Perhaps it's time to rethink what should be controversial and what shouldn't be in the field of autism.


Joseph said...

Maybe autism can be kind of idiot savant. The disadvantages usually strongly overwhelm any strengths.

I had most of the problems mentioned in today's post here.

StonedKrows said...

Wait, you're an incel? I've wondered this about you for years but that titbit cinches it. Had you ever—at any point—considered that misdiagnosis is a possibility? I've had a partner for seven years and I've been told that it's thanks to my empathy that I initially caught their eye and maintained their interest.

I think you may have a branch of sociopathy coupled with mild ADHD, this combination can often be misdiagnosed as autism.

Anonymous said...

There`s already been semi cures for autism, not counting the 9% of kids who naturally fall off the spectrum before 18.

Some interesting recent breakthoughs:-

"Autism symptoms can be reduced 50% in children who received faecal transplants,"


"Boys who got Suramin had autism severity scores drop from 8.6 to seven, the lowest point on the spectrum, many kids started talking for the first time within days further trials expected."


So much for genetic causes, the lazy parking space for scientists who have no idea!

Many autistic people call a cure an existential threat, which is a bit weird since that word is used to describe a threat to life as opposed to simply a medical cure.

There is no real evidence that a cure would really change someone’s personality a great deal since a lot goes into that – memories, family, friends, community, history etc. Maybe it would be like the slow transition from childhood to adulthood, where one slowly looses interest in certain childish things.

Basically, its just the fear of the unknown, one of the saddest things about mental illness is the reluctance to acknowledge that you have a problem, like so called “special interests” basically just another form of OCD under a different name.

Mr_Alex said...

Jonathan, I can sympathise with you, a year ago, I appeared before the New Zealand Government to have Autism Spectrum made a qualifying condition for medical cannabis when the government had a select hearing for it. As usual, the neurodiversity Movement opposed it and also it left parents who had children on the autism spectrum very disappointed. Also with new research coming out from Israel citing Cannabis is a effective treatment for Autism Spectrum, the Neurodiversity Movement in New Zealand has continued to lobby the Government to ignore the research on Cannabis being used as a treatment for autism in Israel.

Mr_Alex said...

Jonathan, I am not sure if you can comment on this, there have been parents who have children on the autism spectrum who have tried to get autism as a qualifying condition for medical cannabis. From what I am reading lately, groups like MAMMA (Mothers Advocating Medical Cannabis for Autism) have been attacked by the Neurodiversity movement and from what I seen in the Neurodiversity Movement, they have begun including Social Justice Warriors and they have begun labelling parents who want to have Autism made a qualifying condition for medical cannabis as Nazis, Alt-Right, Anti-semites, Racists, Ableists, White Nationalists and etc.

Anonymous said...

"This man who attempts to be the voice of reason has stated anyone who wants to cure and prevent autism is no different than a nazi or a member of the Ku Klux Klan"

Wasn't the line between Asperger's and autism the line between the patients Dr. Asperger recommended the Nazis recruit and the patients Dr Asperger recommended the Nazis kill?

Unknown said...

My daughter has an autism diagnosis, I don't but definitely have autistic tendencies, a colleague once called me "badly programmed robot"! Autism is such a broad nebulous thing now, ironically my Aspie tendencies make me a skeptic about the whole thing, I'm a guns blazing empericist! Unless you can come up with a hard and fast definition of it I'll say bin the concept, it's shite. What gets me is that people defend something so vague, so passionately, they brook no dissent, it looks less like science and more like a party line. Or a religion, with articles of faith. The most important of which is "Autism Can Not Be Cured" Is there scientic proof of this? Has anyone ever set out to prove it? Can it be proved? You'd think that answering this would be fairly important, but nah, we KNOW the answers, no science needed here.
Unfortunately this no cure paradigm means we merely attempt to manage the systems, we have the therapeutic approach, parents are turned into their child's psychologists, we attend courses, and of course there's money in running these courses and the whole ASD infrastructure. In my case we were offered Prozac for our 10 year old kid
Yep, an expert was prepared to do that to developing brain.
About this time I decided to seek my information elsewhere, the wonderful world of internet "quacks" and came to my own conclusions about how to sort out my daughter's autism, if not cure it at least to address the root causes.
Now that was three years ago and she's not cured but she's a lot better than she used to be.
What's my point here? That the no cure mantra stops us addressing the causes of autism and the autism management model may even be dangerous, peddling anti depressives to children will have consequences!

Anonymous said...

I am diagnosed with autism and have a condition called FLNA deletion syndrome—one of the syndromes you mention….involving a neuronal failure to migrate properly in the brain of a fetus while in utero. These neuronal migration processes at times can at times be linked to autism. Unlike those leaders of the advocacy movement who have accumulated celebrity status with huge followings, and who will go after other autistics simply for disliking them—I struggle pretty much every day and I do wish there was some form of alleviation. I’m so infuriated that many in the mainstream autism circles are stealing peoples voices by bullying struggling autistic people who question the authority of the leaders to define how others experience things. I’m not a victim, and I wouldn’t change myself—but wtf I would love to experience friendship; would love to keep a job or even simply get by socially; would love to see what it’s like to have a normal conversation without losing everything a person says; would like to know what stillness feels like, would enjoy not getting lost wherever I go. I would like to eat—actually get food down my throat. I have serious food aversions that have affected me physically. I don’t want pity. But what sucks is that pretty much the only place I’ve found where I actually feel an affinity to people is closed to people like me because I question its dogmatism around cures. I know how things go down: I’ve witnessed group harassment on various pages, led by prominent autistic people, and FA it is brutal. While I support the idea of neurodiversity it’s proponents have turned into doxxing, trolling, mindless followers who one day will be led right off a cliff by its leaders.