What Do Autistic People Want from Autism Research? That is what we discussed at #AutINSAR, a vibrant IRL +online discussion from the last three IRL @AutismINSAR meetings. We aren’t at #INSAR2021, so please see the full 2019 convo:

http://www.thinkingautismguide.com/2019/05/autinsar-2019-discussing-autistic.html

#neurodiversity

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Here is what we talked about in 2019: The disconnect between what autistic people want (and need!) from autism research, and what autism researchers tend to prioritize is why #AutINSAR exists. #INSAR2021

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#AutINSAR is a conversation between autistic people and/or autism researchers about needed autism research directions, priorities, oversights, course corrections, and goals. 3/

The #AutINSAR discussion provides an opportunity for autism researchers participating and following along during INSAR to heed the insights and priorities of the autistic population they are supposed to be serving. 4/

#AutINSAR matters because, as @autselfadvocacy notes,
"Autism research is missing the priorities of autistic people. The voices and experiences of autistic people need to guide autism research, beginning with which areas to study.” 5/

#AutINSAR 2019 Q1: What are your top three priorities for autism research? 6/

@autselfadvocacy: Research should focus on how to improve QoL for autistic people across the lifespan, how to end racial and gender disparities in access to dx and services, and best practices in AAC and supported decision-making for people with all kinds of support needs. 7/

My top for autism research priorities are Jobs, Mental Health Management, and skills building #AutINSAR
— Aaron Bouma ( @CANADA566) 8/

I think it's REALLY important for the autistic community to decide autism research priorities - rather than autism researchers... #AutINSAR
— Laura Crane ( @LauraMayCrane) 9/

At @thinkingautism, we are behind any #autism research that improves the lives of #ActuallyAutistic people and their families. #AutINSAR #INSAR2019
— Shannon Rosa 10/

#AutINSAR #INSAR2019
1. Autistic people’s mental health
2. Suicide in autism
3. Supporting autistic people leading participation and involvement in research
— Flow Observatorium ( @ObservatoriumF) 11/

I totally 100% agree with @soundcube that these are fundamental priorities. At @CRAE_IOE, we've done co-produced research on mental health #AutINSAR
— Laura Crane ( @LauraMayCrane) 12/

The journal Autism Research has published 29 brief commentaries on current gaps in autism research. We're curious to know how others feel! https://onlinelibrary.wiley.com/doi/full/10.1002/aur.2101 #AutINSAR
— Spectrum ( @Spectrum) 13/

hard to choose, but the first things to that come to mind = communication supports (beyond requesting!), comorbidities like eating disorders, and sensory issues #AutINSAR
— homo qui vixit ( @endeverstar) 14/

addressing early death/suicide rates, greater understanding of autism expression and needs in those with marginalized genders/races, addressing basic life needs lacks: food, housing, medical care, etc. in Autistic adults #autINSAR — We Are Like Your Child ( @wearelikeyrkid) 15/

Sleep, suicidality, and seizure research are my personal top three [autism research] issues. #AutINSAR
— Sara Luterman ( @slooterman) 16/

top 3 [autism research] priorities
1. Co-production being done meaningfully & not to fulfill diversity criteria but in all areas.
2. Practical, applied & applicable research.
3. Lifetime research- we are young & old! #AutINSAR https://twitter.com/thinkingautism/status/1123988758565666818
— @Sarahmarieob 17/

More participatory research throughout the entire [autism] research process. From writing the grants, to designing the study, to analysing/collecting data, to taking the findings back to the community/ developing leads for further research, building future leaders
— @CRAE_IOE 18/

I am also interested in research into the development of outcome measures by autistic people and their supporters so that future research can test supports that have autistic-informed outcomes as their primary outcome measures
— @LorcanKenny
#AutINSAR #INSAR2019 #INSAR2021
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Yes! i feel like most outcome measures in [autism] research are "acts less autistic now yay" (:/) rather than "better quality of life, better mental health, etc" #AutINSAR https://twitter.com/LorcanKenny/status/1123990875040882688
— homo qui vixit ( @endeverstar) 20/

You’ll love the work being done by @KerenMacLennan who has definitely seen that current measures aren’t always fit for purpose or make awful inferences.
We need to go back to most [autism research] drawing boards. #AutINSAR
— aut Sarah ( @Sarahmarieob) 21/

Autism research priorities: 1) How to convey our needs to other people in ways that result in getting those needs met
2) Effective treatment for consequences of not receiving needed support (including cPTSD)
3) Effective treatment for co-conditions #AutINSAR
— @autchatmod 22/