STOP Autism Research (There's a BETTER Way)
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- Опубліковано 19 жов 2021
- Autism theories & scientists come & go without making progress on improving autistic lives. It's time for a new approach.
#EngageAutism #AskingAutistics #BoycottSpectrum10K
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Excellent point.
I often think about autism research as an allegory in which a bear expert spends lifetime researching bears by studying their behaviours and one day meets a bear that can talk. This bear wants to tell the researcher about their lived experience as a bear, but the researcher dismisses it, because, after all, it's "only" a bear.
It kind of parallels that philosophical conundrum about "understanding" bats, which is impossible from human perspective, because we can't physically experience the world as bats do.
Then the bear eats him 😉
Thank you. Peer support model replaces the behavior/pathological model. An upgrade for research.
YES!!!! It's amazing the conclusions allistics come to from data which almost any autistic adult could tell them meant something completely different. If they aren't getting us to help design and interpret the studies, the studies aren't going to show what they think they show.
Well I've literally jus screenshot this and email over to a proffesor studying autism an the university's of Manchester and Sheffield so here's hoping it helps ✌️
The scientific community has to deeply engage with their ingrained practices of eugenics before they can create useful research on any disabilities, including autism.
Oof edit2add (I)felt that and I'm not a scientist;merely an interested Autist onlooker I guess could say like that, but ye ✌️
I liked your example of the autistic and non-autistic researcher with the same qualifications. Here is an analogy. There’s a research job for the study of the hearing impaired and how that community can be assisted to live happier, healthier lives, where they are able to more fully participate in and contribute to wider society. A hearing impaired person and a non-hearing impaired person with the same qualifications apply. The hearing impaired candidate will no doubt have greater insight to the challenges faced by their community and the adaptations they’ve already had to make as a starting point. I think most people would agree that the person with lived experience would be the best candidate for the job. Same with autism, no?
Yes! But also there is need for people of regular hearing to be involved to have insight from both sides!
I think non autistic researchers have to involved autistic persons. Because only us, autistic persons who have real experience of life living with autism. Too often bully to us because misinformation, misunderstanding, & misused in autism research.
For sure
Why don't we just create an international organisation which can only be lead by us (autists) who will create regional/national suborganisations who'll fight for autists?
Hi, I am a student with autism and im doing a masters then planning to go onto doing a PhD. I'm trying to decide what research project to do for my masters any ideas are very welcome! For my degree I did a research paper on autistic students experiences of university life. Which I really enjoyed
Thanks a lot :)
I think an alternative horizon for nouroD researchers doing things right and being able to do equally good research would be a better understanding of their own epistemologies, the profound philosophical significations about the materialism that underlies their research, and therefore stay in touch with the current most evolved paradigms of their domains that will probably always by determinism include interdisciplinarity and intersectionnality (for what I know of, "situated cognition" for neuro and cognitive sciences, the broad spectrum of cultural studies for social sciences, bayesianism as methodology; then each specific domain, it's vague enough but always heading towards the same point with the same patterns that erase all form of normative/objectivist/hierarchic thinking).
However I know that's some idealist thinking (in the common sense) since it structurally clashes with the real life of research with awful politics, financement etc... and also the eternal circle problem that it's unlikely many non-autistic people would gather that kind of knowledge, the way I present it from my autistic thought pattern, then fitting it into theirs.. which returns back to "let autists do research". But individually, if non-autistic researchers want to do research about us... then read us, have a social consciousness of domination, bias, and ableism, and have some consciousness of that underlying science/materialism stuff please.
But I'm positive non-autistic researchers can do autism research just like any members of a majority towards a minority group, or non-ill poeple towards precise illnesses.
There's no doubt the ability and the curiosity is there, but sadly the direction has always been towards pathologisation. Many projects attempt to buy legitimacy via "consultation" or hiring an autist as a junior member of staff (or figurehead, "ambassador")but still go off in completely the wrong direction and end up hurting people. The most straightforward way of shifting gear is autistic initiation, management and oversight. As long as the work done is useful in improving the lives of autistic people and by extension, society as a whole.
Another eye-and-mind-opening video. It’s just amazing the number of things that seem obvious once someone says them; but someone does need to say them because the “pathology framework” is still so dominant.
Hear, hear! Brilliant, as usual. Thank you 💜
This sounds like a great idea in theory, but do you have any suggestions on how this would work practically? Would research grants for autistic research require that the researcher provide proof of diagnosis? Would it be run on the honour system? I know a few researchers who are weary of getting a diagnosis due to the stigmatism that may be associated with it, with regards to career advancements. The stigma of being autistic in the academic environment needs to be addressed, but perhaps this can only be addressed once the research itself removes the stigma around "symptoms". Seems a bit of a catch-22. In any event I agree that the academy needs to acknowledge these issues and work closely with self-advocate groups to develop better targeted research programs.
Interesting video, brilliant as ever 😊
I was just discussing this last week. Spot on man.
Very thought provoking video of an idea that should be promoted.
Always appreciate your work.
Well said, mate.
Thankful for your work sharing
ive had to tell so many people that its not something u can fix. its how i am. we would need both for it to be better. monitoring both the researchers and researched peoples brains and other factors.
Links to the worm research please, I am intrigued, although I don't know why.
There should be no Autism research what so ever. I am an Autistic person and I want to be left alone medically. I want medical freedom. I don't want to be poked and prodded and treated like some genetic freak or something like that. I have PDD-NOS.
Cool dramatic lighting 0:04
Indeed! ✊
Excellent and shared
I agree, as usual
Everyone tells me that statistics show that Autistic people are more likely to have intellectual disabilities - so I ask them - how has it been verified that these statistics are actually a result of Autistic people being more _likely_ to have intellectual disabilities, as opposed to, say, a _diagnostic_ bias. Nobody seems to have an answer to that question.
Autism research is like astrology, feng shui, and religion in general. There may have some little points but in the end nothing gets better. It is all so faddish. I feel my age and I know little is there to look forward to, while I still get attacked by so many. I spend most of my days alone.
Yes big faxx
nice motivational speech,
🌟♾
👏 👏👏👏👏👏👏👏👏👏
💫✨🌟🖤🖤🖤🌟✨💫
The lighting in this video looks a bit sinister...
When producing a new video every week alongside a full time job and caring for someone else, sometimes one has to just run with the footage because there isn't time for reshoots😉
@@Autistamatic Just remember the set up for your Hallow e'en episode 🎃
Very Vincent Price.
You must specify what you're going to do about co-occurring conditions that cause true disability, if you're going to get rid of "autism" genetic research. There has to be a path towards complete remedy for those impaired with such conditions.
Co-occurring conditions are not autism though. They exist alongside and are far from unique to us. They cannot be used as an excuse to facilitate intrusive and dangerous knowledge falling into the wrong hands at a time when the value of autistic people is so underestimated. As described in the video title - there's a better way.
@@Autistamatic You haven't rectified this. You know that co-occurring conditions or whatever aren't rare in the spectrum. If the clinicians and researchers were negligent by not getting those other conditions diagnosed in people, actions and explanations are required. Research needs to be organized into the causes and cures for the co-occurring disabilities.
@@nutsndoltz I'm afraid I don't see what your argument is then. You want research into co-occurring conditions and I've agreed. We need research into co-occurring conditions. Autism research is irrelevant to your point because that's not what we want to prevent.
@@Autistamatic I want to make sure practical steps are made towards doing that, so that those with such other conditions aren't turned away into some limbo due to the imposed overreliance on the autism label. Their participation in this shouldn't be neutralized or prevented, but transferred into research into other conditions they have.
@@nutsndoltz That's all any of us want and exactly what campaigners are aiming for. Name any co-occurring condition that affects autistic people and there will be anything from 3 to 30 times as many non-autistic people who are also affected by it. The end goal is to relieve or cure the co-occurring condition itself, not "fix" autism, so autism has no place in such research and there's no shortage of non-autistic research participants to choose from. Speaking personally, an effective remedy for GERD would make my life MUCH more comfortable, but I would rather live with GERD than not be autistic. There's a number of videos on this channel on the subject of autism research which will provide a more comprehensive picture.