Report: Tensions build between autism researchers and the autistic community

Interesting video with lots of overlap with us, although some of it is the exact opposite. I have been noticing that, generally speaking, things are just as dysfunctional in autism research in terms of conflict between perception and reality.

It's the exact same story of not listening to patients, except the main difference with us is that the conflict is somewhat starting to be recognized, whereas we are still at the totalitarian phase of imposing control and aggressively dismissing all opposition.

What's especially interesting is that the same issue is happening as with us, but in complete reverse: a research community focused almost exclusively on understanding the biology of autism, so they can fix it, whereas the patients want clinical and mental health support. Completely upside down.

Very notable: there has been a widely publicized genetic study that the patient community stopped through a boycott, as the patient community thinks it will be used to identify and terminate pregnancies, in effect ending autism.

It shows more than anything a medical community completely at odds with reality, doing things that interest and motivate them, rather than what the patients need. I see much of the same criticism everywhere, especially the horrible backstory and how it was never properly addressed. There is no smooth transition away from basically torture and mass disrespect.

In order to get the healthcare we need, patients will need to simply do it for ourselves, to move away from the top-down authoritarian control and towards an accountable and representative model, about as radical a change as going from hereditary monarchy to a free democracy, and facing the same problem with that change: the totalitarian monarchy has to agree to those changes.

https://www.youtube.com/watch?v=FbR3K4L2XnA

 

The same thing is happening with ME research.

 

The core issue here is the failure from doctors to adequately categorize patients. "Autism" is extremely heterogeneous, some of the people could clearly use a treatment, others are fine with being who they are. The ones that make the most noise, of course, are the high functioning folks. The low functioning ones do not have a voice.

The simple solution here is: biomedical research for the low functioning group, psych support (if they want it) for the high functioning folks. But you know, basic logic and common sense does not exist in medicine. While the rest of the world is building supercomputers and cutting edge AI, doctors are still stuck after decades with the most basic issues imaginable.

 

Actua11y, they are being represented by parenta1 groups, who have a much stronger voice than autistic peop1e themse1ves who are obvious1y extreme1y disadvantaged by their communication and socia1 disabi1ities.

 

Now having watched the c1ip, I can add Dr Damian Mi1ton (an autistic researcher) has what wou1d be c1assed as a '1ow functioning' autistic son himse1f (a1though he wou1dn't use this offensive term), so is ab1e to see 'both sides' of this issue. I've spent a 1ot of time with Damian in the past at Autscape.

I've heard Francesca Happe speak at conferences. I wou1d say she has come a 1ong way from her ear1ier approach under her initia1 mentor Uta Frith, and has at 1east tried to 1isten to the autistic community. I won't write what I fee1 about this other 'Sir Simon' as it wou1d definite1y break forum ru1es....

 

I'm autistic and I support biomedical research that respects autism as a difference rather than necessarily a disability. Unfortunately the research climate just isn't providing this.

 

Yes, abso1ute1y it wou1d be good to have he1p with aspects of autistic difficu1ties. The same goes for ADHD. My ADHD is comp1ete1y debi1itating. I doubt I'd have been ab1e to stay in work throughout my adu1thood because of this (and the autism) even if I hadn't had ME.

 

Interesting vid. There's basically a shift happening towards "not about us without us" in a field where working in the exact opposite way (about them without them, by people with no personal experience of what they're building their career on taking an authority position "above" their study subjects, without having to be accountable to those subjects) has been the norm.


I just saved a Twitter thread related to this a couple of days ago.

There apparently are problems with CBT getting touted as a success while the actual participants say it doesn't help them, but in a different way than we do:
CBT gets trialled on autistic kids - the self-reported outcomes show no difference, but those based on informants, clinicians, and task-perforance do. The conclusion is made that "These findings indicate that CBT may significantly improve the symptoms of ASD and social-emotional problems in children or adolescents with ASD."

So while the people it is for report it doesn't work, their surroundings (in a place of authority, like parents and clinicians) say it does, which raises questions as to who is "served" with CBT for autistic youngsters. That the surroundings notice autism less while the people with autism say they feel the same looks problematic.

https://twitter.com/user/status/1637037343088558082

 

Ann Memmott is another autistic researcher/speaker - she is autistic herse1f and I seem to remember that she a1so has an autistic chi1d/chi1dren (at 1east one because I reca11 her ta1king about parenting). I've heard her speak at conferences and have a great dea1 of respect for her. I be1ieve she is one of the few who gets 1istened to by po1iticians.

 

Yeah actually this is a huge point where it's also the exact opposite of us: most of the autism community, that I can see, does not see autism as a disease, it's not something to fix. The medical community sure does, however the framing has slowly adjusted.

And yet ME is clearly a disease, but instead framed as a difference of thinking. It's almost as if you could swap between our contexts and everyone would be better off, even the researchers.

But in both cases, what you find is that the mistakes that caused this are in the distant past, made by people who are long dead, and a system that is utterly unable to let go of its baggage.

Oh yeah and I even remember from a few weeks ago the same issue with CBT used as "treatment" for autism, with researchers gushing at how effective it is, and the patients overwhelmingly saying it's definitely not.

It's beyond obvious that the issues are systemic, even most physicians recognize the systemic nature of most of their problems, but they never want to change anything, even though only they can.

This report ends up saying there is work to be done by both sides, but to hell with that. When one side has controlled everything for decades, they have all the responsibility, even more so for never having listened from that position of absolute power.

 

And presumab1y no way of b1inding this type of research either!

 

What I find sad is that many of the difficulties that people with ASD are dealing with (e.g. anxiety, depression) might not have become that severe if the necessary accomodations would have been implemented from early on (school etc.).

So the researchers are looking into biology while patient advocates want treatment while society denies their needs.