Psychiatrist writes about his views on Autism/Neurodiversity

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http://slatestarcodex.com/2015/10/12/ag ... ism-cures/

He writes about the people on the spectrum that he knows in his life, and he also works with severely autistic people that can't even talk. He also talks about employment, life outcomes, and general contentedness with people on the Spectrum.

There's nothing there I disagree with and his views are very similar to my own. Very interesting read, thanks for linking it.

Thanks, my pleasure

He agrees with 99% of what he hears from the neurodiversity movement and disagrees with 1%, specifically with those who reject research because of the cure idea. Fair enough. This is essentially an endorsement of the neurodiversity movement.

I think it's a little repellent that he holds the most self destructive and violent lives of some autistic people as somehow more real or more valid than the less self destructive, less violent lives of others, but I understand his perspective.

I think with a little education about what the issues mean and why some people are so passionate about the 1% he finds fault with, he would probably see that position in a different light.

Interesting read, thanks for sharing.

It looks one sided because he was only talking about the 1% because he wanted to talk about his view on the cure. He is otherwise 99% with neurodiversity from what I understand.

Thanks for sharing.
I sure wouldn't want to be institutionalized for life... might as well die.
Whether a cure for LFA is appropriate or not is difficult to make a statement about, especially because of the amount of accomodations needed and work it takes from caregivers... Aspies have it very easy by comparison. From a utilitarian standpoint it would certainly make sense.

My reply was the 865th so I do not expect it to be to be read. But I think he is the type of person who will read a lot of the replies and really listen to what is bieng said. And that is all that one could ask for.

Good article. I think it highlights an issue that has been coming up for me, that the conversation we should be having is not whether or not to research a cure, but how public and charitable funds should be allocated, and in what percentages. I've heard TV documentaries and read articles about how there's all this money in the US for researching the causes of ASD and possible cures, but very little money to support families who are struggling to pay for therapies and young adults transitioning out of the publicly funded programs they get until they are 22. I won't get into the morality of cures so much, since I don't really want one, but I do see a lot of people struggling with very little support, even through insured care.

I thought the writer had a lot of good thoughts, but I disagreed with his distinction between LFA and HFA, which I think is an artificial distinction. There are the obviously LFA who are nonverbal and constantly destructive, and the obviously HFA who hold down jobs and are parents, but a lot of us have a bit of both. On good days, I'm working at my job, cleaning house, or going to the movies or the park, happily flapping my hands if I see a goldfinch or chipmunk. Wheee! On danger nights, I'm freaked out because the subway was overwhelming, sobbing for an hour, unable to speak, rocking, screaming, picking pieces of my skin off and punching myself in the head. So am I HFA or LFA? Well, both.

I am both the person who can debug your website in 15 minutes and the person who can't remember to do any new procedure if it's less than a year old. I am the person who can solve a client's problems and the person who struggles to understand what people are saying in a staff meeting. I can manage three web projects but forget to pay my bills (I have a wife to do that, thank you wife). On two occasions, I had a meltdown in public so bad, cops thought my wife was abusing me and almost arrested her.

My point, and I do have one, is that we need to prioritize what our community needs most. I think the causes of autism are a nifty, interesting mental exercise, but ultimately the cure is far off. There are more pressing matters NOW: people who need help coping, getting therapies, learning how not to self-harm, getting jobs, getting emotional support, getting healthcare.

Yeah, disagreed with him calling HFAs “introverted, likes math and trains, some unusual sensory sensitivities, and makes cute hand movements when they get excited”. Does seem a bit demeaning if I'm honest, as though we don't have genuine problems. Most people are somewhere between his two descriptions. Someone with what he called HFA would be NT/BAP due to the lack of clinical impairment. But I suppose it's nitpicking.

Lot of it was very hard to read. So he gets lot of autistic patients who are violent and suffering and act out and we are apparently the minority who are posting here and living on our own. I have visited nursing homes and group homes and they were all okay. I guess I was just lucky. Even my grandma lived in a home and she was very happy there. The only problem was that she gained weight because the caregivers there would give her lot of sweets because she wouldn't remember she just had a piece so they kept giving her more. But the next one she was in, they didn't keep giving her more and with her short term memory loss and having Alzheimer's she would even forget about the cake or pie or any other sweet. All they had to do was distract her and she would literally forget about the food. It's unfortunate he has seen lot of those places bad but yet also knowledge there are good ones too.

I know lot of higher ASD people don't like hearing this stuff and I keep hearing how lot of us are not violent and then I hear that lot of us are. Even Dr. Phil said that Issy was the ten percent and also said lot of autistic kids are not violent. I keep going around in circles with this fact.

No, he doesn't call HFA that way.
He refers to people that he knows who identify as being autistic:

Does seem to be implied, though, even if not outright stated.

Meh he is assuming people who dislike the idea of a cure are opposed to any and all psychiatric treatment for those on the spectrum. Why does a non verbal low functioning autistic that harms themselves have to be made 'neurotypical' to improve...what would be wrong with perhaps becoming milder?

And with the women in restraints...did they try anything besides physically restraining her? Did they attempt to see if there was communication potential like finding out if she could write or type? I mean sure someone who is trying to scratch their face off obviously needs some psychiatric care but what them becoming 'neurotypical' would be the only hope?

He also doesn't seem to understand any kind of 'cure' would be quite invasive either involving physical tampering with the brain trying to rewire it as normal(which isn't even entirely clearly defined yet and everyone's brain is different), or it would involve drugs that drastically alter neurology....that is what a lot of people oppose. That and currently there is no 'cure' proven to take away anyone's autism to begin with so there is the idea that more funding/energy should go to helping the autistic population instead of wasting it all on the hope that 'one day there will be a cure'.

Also he mentions a lot of co-morbid disorders that 'curing the autism' in an individual wouldn't for sure get rid of...you think if you make an epileptic autistic neurotypical they will just magically not have epilepsy anymore? And guess what CBD a chemical found in marijuana treats epilepsy more proven than curing autism being a treatment for epilepsy....what is wrong with treating co-morbids with effective treatments whilst trying to help someone become the best 'autistic' they can be.

He kind of seems to sneer at those of us who are higher functioning on the spectrum...about how great we function, well why couldn't the goal be helping lower functioning autistics move up on the scale be a goal...I think i have read someones level of functioning on the spectrum is not set in stone.

Also even if my autism was removed I still wouldn't be a go lucky, upper middle class person who can just 'throw money at my problems' like the author claims to be.

But ones severity of autism is not set in stone...so why should 'a cure' be the only option for lower functioning individuals. If the severity is not set in stone that would imply LFA autistics can become higher functioning yet still autistic. I think that is a more reasonable goal than trying to make them neurotypical.

Now granted some individuals would still continue needing support and care, and still not all autistics would be 100% independent....but that is why there are supposed to be accommodations and help available to the disabled. Also what about all the LFA autistics who are found to be quite articulate just not verbally? But yeah I say a child constantly disturbed by sensory imput, having constant meltdowns and behavior that harms them-self moving up to say a meltdown every so often, safer stims when overwhelmed and either learning to verbalize or otherwise communicate their thoughts even at a basic level would be quite an improvement. Sometimes language used seems to indicate the real concern is simply 'how do we get rid of this burden' not so much how do we really help these people have improved lives.

Trouble is if they use all the time, money and resources on finding the ever evasive 'cure'...then everyone gets stuck thinking a cure is the only possible way that autistic s life can improve.

Agreed on all points, Sweetleaf. I also think of autistic people whose parents were told, back in the fifties and sixties, that they were destined for institutionalization and that they would never speak. Temple Grandin and Daryl Hannah are two examples of this. We don't know what has been tried with these people and what hasn't. Is the institution experience itself leading to destructive behaviors, as the author admitted might be part of the issue? Is self-injury because of feelings of self-loathing or frustration at being unable to communicate? What nonverbal communication has been attempted? Is the person being abused in some way? People are too quick to assume that because someone has difficulty communicating, there is nothing going on in there.

I wonder, too, if the parents and autistic advocates have differing definitions of "cure." Some parents may simply mean "not hurting themselves or others," "not destroying the house," or "able to communicate." This could possibly be accomplished through much drastic means. As far as they are concerned, people like us are already "cured" or not in need of a cure.

Well, I at least agree with him on the autism-influenced-abortions angle if nothing else, as I firmly believe that the non-Autistic are always and necessarily Lebensunwertes Leben.