ManonFeb 11, 2023

This article in spectrumnews.org gives deep insight into problems around autism reseach.

However, I'm unhappy that it comes across as if the now louder voices of autistic advocates and researchers stir the problems in the first place.

What do you think?

https://www.spectrumnews.org/features/deep-dive/autism-research-at-the-crossroads/?utm_source=Spectrum+Newsletters&utm_campaign=f182bcfb28-WEEKLY+20230128+CROSSROADS&utm_medium=email&utm_term=0_529db1161f-f182bcfb28-169086610

#actuallyautistic #autismresearch
@actuallyautistic

Autism research at the crossroads | Spectrum | Autism Research News

The power struggle between researchers, autistic self-advocates and parents is threatening progress across the field.

Spectrum | Autism Research News
Show thread🌟ジギーくんFeb 11, 2023
@manon @actuallyautistic I've read some people mentioned there expressing grievance that their position has apparently been misrepresented by the article's author.
Show thread🌟ジギーくんFeb 11, 2023
@manon @actuallyautistic This is one of twitter threads I came across regarding it:
https://mobile.twitter.com/DrMBotha/status/1618274775608197120
Monique Botha is actually they/them 🤷🏻‍♀️ on Twitter

“We are going to talk about this article so buckle up. I am featured and I am not particularly happy with how I am featured in it, given the depth and breadth of what I discussed in my interview. I am not happy at the lack of nuance in the portrayal of autistic people 1/”

Twitter
Show threadKevin Davy
@zigi_now9 @manon @actuallyautistic
To me it seemed to be suggesting that whilst the anger of Autistic's was understandable, if done to excess it could be counter productive and especially if the anger is aimed at scientists or because of poorly understood science. That to some degree is fair. That it could be a useful tool in the fight, but that it should not necessarily be the one always reached for. Whilst this does in some regards make sense also, it also ignores the underlying frustrations that cause the anger, especially with regards to the nature, aim and direction of so much research. Also highlighting the role of twitter advocates and suggesting that they are not representative of Autistic's as a whole, is very much missing the point of where so many of them stand and where so much of the anger comes from, not to mention the actual reach and impact of those advocates.
Feb 12, 2023 at 1:53amWeb
Show threadTheautisticcyclistFeb 12, 2023
@Pathfinder @zigi_now9 @manon @actuallyautistic I think social media pile ons are unhelpful and all sides need to listen to each other. However, the side that needs to do by far the most listening is the non-autistic scientists who are so used to talking about us as objects of research. The anger is justified
Show threadManonFeb 12, 2023
@Pathfinder
The article is not „symmetric“.
Take the first story about the lady who spent 3 years on researching for her paper and was proud of it, and then came the nasty autistic folx and dissected it.
I’m sorry for the young researcher. It must have been terrible for her to have her high-quality research work gutted because of a requirement (proper language) that nobody had communicated to her in the first place.
Well, this happens to autistic people every day.
@zigi_now9
Show threadKevin DavyFeb 12, 2023
@manon @zigi_now9
It was definately more towards the, stop picking on the "experts" with your pesky truths side of things. Forgetting as usual who the actual experts are. Sometimes if "something isn't broke" it just means that it hasn't been hit hard enough yet.