Autism research is highly focused on causation and autism “treatments,” areas most autistic people neither benefit from nor want studied. Enter AutINSAR, a much-needed discussion between autistic people, autism researchers, family members, and professionals about priorities in autism research.
This year’s AutINSAR chat took place during INSAR 2025, the annual meeting of the International Society for Autism Research, in Seattle, Washington—both in person, and simultaneously as on BlueSky. The discussion—compiled below—was lively, pointed, and covered a diverse range of topics too-often neglected by autism researchers.
Content note: This discussion includes eating disorders, abuse, and mental health issues including suicidal ideation.
Question 1: What are your top three priorities for autism research?
Steven Kapp @drstevenkapp.bsky.social: Autism researchers need to appreciate and unite around the relevance of the neurodiversity movement for autistic people with high support needs (HSN). We need better understanding of AAC (and apraxia of speech) for HSN autistics. Also, high-quality research on how services impact lives.
Charlie Hamilton, CRAE (answers via email): engagement and co-creation with autistic communities; life trajectory and experiences of older professional autistic women; practical tools for PNT managers seeking to develop inclusive workspaces and create sustainable employment opportunities for autists.
Mary Doherty @autisticdoctor.bsky.social:
- My top priority is for senior researchers in the field to examine their own positionality, for many of them to realise that they too are autistic, to embrace this, explore what it means for themselves & our community, and then—when ready—to own it and come out publicly.
- Next, mental health, in particular how autism stigma is embodied as shame & how this contributes to our poor mental health. What are the steps we can take to reject this shame—which is imposed on us—how we can become confidently autistic instead? How will this affect MH?
- My third priority is sensory processing. Differences in sensory processing are at the core of our experience as autistic people, yet sensory issues are under recognised & under researched. Deeply grateful for research & leadership of @nickputs.bsky.social in this area.
[response] @alangwitzki.bsky.social Yes, but research into how environments can be improved is important, not how autistic people can be pressed into current society with biomedical methods.
Clear Autism @clearautism.bsky.social:
- Autism and ADHD, aka AuDHD, and other co-occurring conditions. Autism rarely if ever comes unaccompanied, so why do we still silo neurodivergence like this? Is this not part of what allows #ProfoundAutism to get traction? Can we examine neurodivergence holistically?
- Can we get more on mental health understanding and support for autistic people? And, related, the relationship between self medication, addictions and neurodivergence. This is also related to ND people within the criminal justice system, but maybe that’s a separate question.
- Others have already said it, but please please please: SLEEP. Sleep deprivation is against the Geneva Convention because it’s considered a form of torture, but when autistic people don’t sleep, it’s just “part of autism.” Why do we accept being fobbed off like that?
Dots and Lines @dotsandlines.bsky.social: There are other topics which are worth studying as well, but off the top of my head at the moment, in no particular order:
- Burnout (esp. prevention and recovery)
- Co-occuring conditions (personally, PMDD [Premenstrual Dysphoric Disorder])
- Autistic culture (inherently valuable + acknowledging it humanizes us)
[response] Pipper @piperine.bsky.social: There definitely needs to be research on how hormone cycles affect us, PMDD ruined my life and most birth control makes me psychotic. Autistic menstruators are suffering and most doctors don’t even acknowledge the link
[response] Louise Ting @neuro-observant.bsky.social: Totally agree. I’m currently taking part in a study on autistic experiences of menstruation! It’s over a number of years though so results are a long time away but it’s great that it’s happening and the duration will mean more details are captured about what it’s like for autistic people 🙂
morninggloryvt.bsky.social @morninggloryvt.bsky.social:
- Mental health (including trauma and suicide)
- Physical health and chronic illness (including MCAS, POTS, EDS, Long Covid, ME/CFS, autoimmune issues, migraines, etc.)
- Long-term effects of ABA therapy and alternatives to ABA
Ivanova Smith @ivanova1994.bsky.social: I want research things that keep us out of institutions or other abusive treatments. I want reseach that helps us keep our autonomy and freedom.
@tamamamamara.bsky.social: My priorities would be ensuring basic human rights for autistic people, addressing inequities in health and resources, and combating autism-related stigma and discrimination.
Question 2: Which topics do #ActuallyAutistic people discuss that are missing from research conversations?
John Marble @johnmarble.bsky.social: Research into HOW autistic people think (thinking patterns, learning patterns, etc.). I haven’t seen much of that presented at #INSAR2025.
Ava Gurba (she/her) @avanicole23.bsky.social: Motor difficulties experienced by autistic people from a neuroaffirming perspectives.
Nahime G. Aguirre Mtanous, AM, LSW: @nahime.bsky.social: How to teach MH [mental health] clinicians how to talk more like us; it’ll affirm our experiences and feelings and behaviors if we have therapists that actually understand our language processing differences.
Lopsided Jones @lopsidedjo.bsky.social: Barriers to accessing medical care, including mental health care; effective modes of therapy as assessed by autistic adults—not caregivers.
Steven Kapp @drstevenkapp.bsky.social: Research on
- How many “profound autism” supporters support segregation etc.
- How internalized stigma relates to reduced quality of life & especially its relation to support for “losing” an autism diagnosis
- Non-autistic neurodivergent people’s views on neurodiversity beyond autism
Dr. Alyssa (they/them) @yesthattoo.bsky.social: I can still count the number of articles *about/addressing* AAC for substantially speaking autistic people that I’m not an author for on one hand.
(Quite a few more reference my work, but … often to say AAC is good for nonspeaking kids??)
@morninggloryvt.bsky.social: Autistic parenting experiences, chronic health issues, trauma, masking, autistic burnout.
Charlie Hamilton, CRAE: Brain fog during menopause and autistic processing, why many late-diagnosed autistic women identify as AuDHD. Additionally, why academia promotes inclusivity while its systems remain exclusive, particularly regarding grant applications that demand definitive responses, undermining the principles of community engagement and co-creation.
Ivanova Smith @ivanova1994.bsky.social: how videos games benefit autistic people. Reseach on sensory issues and why it causes us pain.
Mary Doherty @autisticdoctor.bsky.social: Sensory needs. Meltdowns, variable support needs, variable capacity for speech—what happens in my brain when I can’t access speech? Stimming—what happens in my brain when I’m stimming? What do we share despite our heterogeneous profiles & support needs?
chaws eternally exhausted @saltntights.bsky.social: On burnout and also how we metabolize medication differently, or our sensitivities to medication. Seconding the sleep issues as well.
Dots and Lines @dotsandlines.bsky.social:
- Autistic joy, and firsthand experiences more broadly
- Examination of non-autistic behavior and society from an autistic point of view
- Experiences of autistic people who are marginalized in other ways (thankfully occasionally mentioned, but we need to hear from more of us)
Christine Jenkins, Canada @christineajenkins.bsky.social: Bullying/abuse due to insistence on compliance, isolation due to sensory overwhelm, and inability to attend #INSAR this year due to politics and lack of virtual option.
[response IRL] Thinking Person’s Guide to Autism @thinkingautism.com I think we are ALL upset at the lack of a virtual option at #INSAR2025 #AutINSAR. At least almost all the people at this table are! -SR
Brian Irvine @brianirvine.bsky.social: A virtual version is desperately needed.
But – coming from across the pond – Seattle has given me hope. There is seems to be a quiet resistance to political shenanigans that never hits our news cycle.
[response IRL] (group) to autistic people who are LGBT, we don’t have enough supporters/providers who understand the LGBT experience. And this is crucial because the autistic community members are more likely to be LGBT.
Also Ava Gurba (she/her) @avanicole23.bsky.social wants more on meltdowns from ND perspex.
Question 3: What concerns do you have about the direction of autism research based on the work at INSAR or elsewhere?
@zahrablue.bsky.social: I’m concerned people are just doing research to do research I went to a lot of the panels and it just seemed like they were just researching to research things that have no benefit to autistic people and their lives.
[response] KarenAnnTimm (Flutters are my Âûn) @kt-neurorealme.bsky.social: …a prime example of why Autistic-led research is so essential. For us, it is more than just a degree requirement or a poster presentation. It’s our lives.
[response] Die andere Perspektive @andereperspektive.bsky.social: Yeah, I’ve been thinking that, too.
I think there are a lot of geneticists/ neurologists/ gastroenterologists who just consider how they could get any research funded, and then turn to autism, look up the criteria in the DSM and copy-paste from the introductions of other articles from their field.
It’s uninformed and uninspired, and that way they only ever come up with projects to “causes” and “cures”.
But I think they could be able to do meaningful research in their fields if they started to listen to the experiences of autistic people.
John Marble @johnmarble.bsky.social: I’ve seen research at #INSAR2025 moving in a generally positive direction. But I’m concerned about how some are using funding pressures and INSAR board influence to push incredibly outdated ideas, including the adoption of the term “profound autism,”. #AutINSAR
@tamamamamara.bsky.social: It seems like most researchers continue to place the burden of change on autistic people instead of building the capacity of communities and service systems to support autistic people in thriving. Very little seems to be meaningfully beneficial to us, and people are profiting off it.
Tacking on a statement at the end like “though we only focused on changing autistic people, we intend to address the rest of the landscape on X issue vaguely at some undefined point in the future” is not helpful at all.
PHCUK conference 2025 is coming! @mccheapo.bsky.social:
- Lots of meta, not enough constructive research into measures to reduce symptoms like sensory sensitivity, meltdowns and so on.
- The few studies that try to do this don’t seem to allow for the “many autisms” – a given diet / supp / drug might only help a % of patients, but that’s still useful.
Ivanova Smith @ivanova1994.bsky.social: I am concerned research is focusing on controlling autistic people and not work with us. I worried research can be used to justify discrimination like promoting institutions and treatments that take away autonomy.
KarenAnnTimm (Flutters are my Âûn) @kt-neurorealme.bsky.social: Concerns—lack of attention on aging amongst Autistics; too many non-Autistics doing research on Autistics without considering ethics and without understanding Autistic ways of being; too many efforts to ‘cure’/ find causality (again); huge lack of attention on #BetterWaysThanABA.
@alangwitzki.bsky.social: eugenics, prenatal testing/embryo selection, “curing” autism in utero or in children because parents hate them; calling eugenics a matter of women’s rights like TERFs attack trans people.
Steven Kapp @drstevenkapp.bsky.social: The term “profound autism” threatens to become increasingly entranched, while its supporters may support the work of RFK Jr. to institutionalize and stigmatize etc. autistic people.
Also, subtyping autism more broadly and AI-based diagnosis are not well-supported but may be abused.
Charlie Hamilton, CRAE: I am notoriously optimistic, but I am worried about the potential uses being put forward for AI and the limited/non-existent involvement of ND researchers and the continued “cure” narrative.
Dots and Lines @dotsandlines.bsky.social: By far my biggest concern is the way US and UK politics are moving more towards stigmatizing and even eliminating autistic people, especially autistic trans people. It’s going to be harder to study much without putting us at risk, plus many of us who can hide at all probably will.
Christine Jenkins, Canada @christineajenkins.bsky.social: I can’t see the whole program because I don’t qualify to be a member, but the biomedical stream still seems overpowering. Not enough lifespan issues (past 25 or 30 yrs of age). If we want to save lives, then Autistic people need to co-create and co-produce #ResearchAutisticsWant.
Question 4: How do you think your research will improve the lives of #ActuallyAutistic people who are here and not just future generations?
Monique Botha @drmbothapsych.bsky.social: IRL says that so much of the research is underpinned by ableism & dehumanization it is not going to return benefits.
Sometimes discussions at #INSAR2025 are all about “wait and see,” & there’s a big discrepancy in tools we use to describe trauma.
Dena Gassner IRL says that when we have ND researchers, but the non-autistics listen, then autistic people can influence research direction and teach allies how to promote and support autistic researchers.
Chloe Rothschild IRL: If you build it, they will come.
@tamamamamara.bsky.social: I am grateful for the opportunity to work on a variety of research projects that center autistic voices. I am applying a critical autism studies lens to employment-related autism research because so much has been based on non-autistic perspectives without any community input!
Charlie Hamilton, CRAE: I am working on the development of a neuro inclusion measurement tool to support the education of business majors.
Ivanova Smith @ivanova1994.bsky.social: The research that studies making healthy food more accessible to autistic people. The research about how frequency can help autistic person take break from stimming when they want to.
Steven Kapp @drstevenkapp.bsky.social: My research on autism as a construct, diagnosis & identity & supporting autistic ppl has helped to promote nuanced understanding of the neurodiversity movement & its relevance to autism’s complexity, innnateness, autistic ppl with high support needs, and autistic people’s relationships & services
Christine Jenkins, Canada @christineajenkins.bsky.social: Sorry, can’t be impartial about my own research. Up to others to rate its usefulness in regard to menopause and aging.
Question 5: Which co-occurring conditions need more attention?
Clear Autism @clearautism.bsky.social: As mentioned in my earlier response, AuDHD and its role in hiding or blurring what might otherwise be a clear autism (ahem) diagnosis. Do we need a specific AuDHD diagnostic tool?
@tamamamamara.bsky.social: EDS, POTS, MCAS, cPTSD, sleep disorders, eating disorders, anxiety and depression, AuDHD (!!!), eating/GI issues, ID, and many others!
Dots and Lines @dotsandlines.bsky.social: PMDD, anxiety (especially differences from non-autistic experiences), EDS, GI issues, trauma…Is “why” not self-explanatory? To understand autistic people’s experiences (and non-autistic people’s too, when it comes to co-occurring conditions) and help us be healthier and happier.
John Marble @johnmarble.bsky.social: Trauma
Ivanova Smith @ivanova1994.bsky.social: I like see more studies of autistics with FASD and other intellectual disabilities: lots of people think you can’t have both but you can. That true with other IDD too.
Christine Jenkins, Canada @christineajenkins.bsky.social: Sleep is a big one we’re missing. We lose a lot more during the hormonal swings. I’m sure the lack of it has an effect on the young ones’ ability to cope. I worry about the off-label cannabis/CBD use by parents (given to kids not themselves.)
Sleep Quality and Mental Health in Middle-Aged and Older Autistic and Non-Autistic Adults #INSAR2025 poster by
@gavrobstew.bsky.social please post here again!
bsky.app/profile/gavr…
— Dr Gavin R. Stewart (@gavrobstew.bsky.social) May 4, 2025 at 6:44 AM
Menopause and hormonal issues; overlap of autism with ADHD; connective tissue disorders; breast cancer.
Menopause has also screwed up my sleep again, mostly problems with night sweats and returning to sleep.
KarenAnnTimm (Flutters are my Âûn) @kt-neurorealme.bsky.social: Cumulative impact of sensory trauma; Minority stress related illnesses; fibromyalgia; inflammation; IBS; these are minimally understood & rarely mitigated-doctors are not seeing connections we are; Synesthesia, Dyspraxia, & Gestalt Language Processing-communication connections needed.
Larissa Venema-Avezaat @larissava.bsky.social: To add to the above: I find it hard sometimes to separate CPTSD from autism, as they intersect, causing suffering way beyond either would do separately.
Ditto: Trauma/CPTSD. Why: autistic ways of trying to regulate during dissociation etc may be different from gen. population? e.g. autistic flow state/ monotropism as a way to counterbalance dissociation or distress. Or how to use sensory input to stay safe/alert/come back to present?
Steven Kapp @drstevenkapp.bsky.social: Conditions like catatonia can stop autistic ppl from doing things and in one form can even be fatal. Perhaps understanding, supporting movement differences (dyspraxia) as inherent to autism might help here.
Apraxia of speech also might interfere w/ speech but not necessarily language.
Charlie Hamilton, CRAE: Binge-eating disorders, GAD and PTSD (following a traumatic event).
Larissa Venema-Avezaat @larissava.bsky.social: suic*de (ideation). Sorry, not a happy one. Recent Dutch research using psychosocial autopsy showed 44% of Dutch youth that died by suic*de was autistic. I get the ethics part is hard on this one, but please ask us while we’re still alive, don’t (just) dissect us after death.
@zahrablue.bsky.social: Autism hormonal imbalances ik there’s research on autism and pcos but possibly broader hormonal imbalances like pmdd which can actually create intense suicidality, people with personality disorders like, eupd etc and also being autistic less likely to get diagnosed with autism due to convergenc
Carol Greenburg @autisticenough.bsky.social: Eating disorders often co-occur with autism. ARFID (Avoident Restrictive Food Intake Disorder) in particular. Adult onset ARFID is rarely diagnosed at all, but when it is it is rarely discussed in the more typically developing population, but more often recognized among autistics.
[response] Christine Jenkins, Canada @christineajenkins.bsky.social: Yes but I make a distinction between Disordered Eating and ED. Traditional group therapy doesn’t work for us. The motive is not to stay skinny.
[response] Carol Greenburg @autisticenough.bsky.social: True, there is a difference between disordered eating and eating disorders, and body dysmorphia is not always a component of eating disorders.
Question 6: What are some concerns of minority autistic populations that don’t get enough attention?
@zahrablue.bsky.social: Autistic people who grew up in religious institutions backgrounds how that impacted their lens on autism
Erika R. Shira, LMHC, MT-BC @erikashira.com: Black preschoolers not getting a diagnosis because white evaluator was sooo impressed by rote social skills due to not being aware that kids in most Black communities are very explicitly taught don’t touch things that aren’t yours, say excuse me, speak respectfully to adults, etc.
Can we stop publishing any research on autistic children that only lists “boys” and “girls?” I’ve never been in a group of autistic children that didn’t have a whole lot more genders. Obviously this research is based all on reports from out-of-touch parents, not from kids or attuned parents.
More on the (common, despite professionals denying it exists) autistic profile of folks who can do academics, go to college, but are pretty severely disabled in terms of functional pragmatics, novel problem-solving, independent-living skills in general, etc.
[response] Joelle Maslak @jmaslak.bsky.social: YES. I think of myself and a friend, both of us have college degrees. I tend to struggle significantly with taking care of myself, he struggles significantly with written language. We exist.
Bea @autiebea.bsky.social: substance abuse…does it serve a uniquely autistic function in autistic ppl? i’m starting to consider it a form of self-harm, like head-banging…which serves a concrete purpose. for me, it’s so i *can* feel big feelings in their entirety.
[response] Pipper @piperine.bsky.social: This resonates. Recovery looks different for me too. It’s hard to find resources made for autistic people. There isn’t the research on what works for us, so we have to figure it out ourselves.
KarenAnnTimm (Flutters are my Âûn) @kt-neurorealme.bsky.social: Intersectionality; masking paired with code-switching; media representation; diversity of Indigenous Autistic experiences; factors causing school to prison pipeline; impact of cultural biases in diagnostic processes; Teacher interpretations of Autistic “behaviour” of BIPOC students.
Claire @isolinearchip.bsky.social: For my own interests, sleep differences. Not sleep disorders (though more research is needed on those too), but more experiential differences in dreaming, for example. Vividness, lucidity, dreaming very quickly upon falling asleep, strong hypnagogic hallucinations, general relationship to dreaming
Steven Kapp @drstevenkapp.bsky.social: Racially and ethnically underprivileged autistic people often do not feel like the autistic community adequately addresses their concerns and is properly intersectional. We need further research on this & better ways to include people & advance social justice in neurodiversity movement
Charlie Hamilton, CRAE: Accumulation of micro-traumas, PTSD in autists who have experienced life-threatening disorders or accidents that have transformed their physical capacities, binge-eating and other disorders and autistic introception.
Ivanova Smith @ivanova1994.bsky.social: I like see more Research on adoption trauma in autistic adoptees
Christine Jenkins, Canada @christineajenkins.bsky.social: minorities missing from the research priorities? The Global South (arguably the global majority) the lost generation 50+, and non-PhD scholarly researchers.
Dots and Lines @dotsandlines.bsky.social: Autistic people of color often have additional safety concerns due to how they are viewed/treated differently than white and/or non-autistic people.
Autistic kids and teenagers rarely have their point of view heard at all, with research typically focusing on their behavior or the point of view of parents/other adults. Meanwhile, older autistic people are often assumed not to exist.
As mentioned in a previous answer, transgender autistic people are currently targets of US and UK politics, which is a whole discussion’s worth of concerns.
Dr Aimee Fletcher (@aimee_speaks) @aimeespeaks.bsky.social: Understanding & supporting nuanced autistic traits in different cultures. Organisations like @semascot.bsky.social [www.sema.scot] are doing a brilliant job in Scotland in addressing these gaps to improve the lives of autistic ethnic minorities.
How can we support & promote these incredible APOs with this work?
Ava Gurba (she/her) @avanicole23.bsky.social: the access and outcomes of autistic people accessing social services e.g., social security, HCBS from the lived perspective
[response] Dr Rasu Shrestha @rasushrestha.bsky.social: It’s about the broader care team. The circle of trust.
Question 7: What are some barriers that make autism research results less accessible to #ActuallyAutistic people (cognitive, financial, etc), and how can we reduce them?
Monique Botha @drmbothapsych.bsky.social IRL says too many researchers are writing for their peers. Because terrified for their jobs. It causes a toxic culture of writing for the wrong people.
@zahrablue.bsky.social says that there’s also a fear of being wrong, so if you say something boldly, you have to be brave, and that’s hard.
[IRL response] Dena Gassner says that there are a lot of people who have good hearts and then realize that they’ve done harm. And there’s no support for them to be supported through growth. We need to be more welcoming and forgiving, and provide a safe landing space.
[IRL response] Monique Botha @drmbothapsych.bsky.social says that being wrong, especially having a paper retracted, can end your career.
[IRL response] Carol Greenburg @autisticenough.bsky.social says that this is less likely for white men. Much more risky for other researchers.
[response] KarenAnnTimm (Flutters are my Âûn) @kt-neurorealme.bsky.social: And I suspect more likely for Autistic researchers not strictly following neuronormative structures. Of note, at table talks this week, we heard of researches losing funding if related to DEI in the US.
[response] Mary Doherty @autisticdoctor.bsky.social: Agreed. This is exactly what we’ve aimed to do in the @aims2trials.bsky.social Autism Representatives group & we’ve seen hugely positive change as a result, which I think is also impacting positive change at #INSAR2025.
@morninggloryvt.bsky.social: Ableist, medical model language is a huge barrier to me. I am not going to wade through multiple paragraphs about how “disordered” my kid and I are or how awful our “deficits” are. Many of us do not have the spoons for dealing with these microaggressions.
@tamamamamara.bsky.social: I think a major problem is that so much research was not designed in a way to be relevant or useful to most autistic people and many find it harmful. We also need to be more creative and provide information in different accessible formats to reach a wider audience of autistic people.
codeman38 @codeman38.zone38.net: Definitely seconding what people have said about plain, accessible language.
I keep hearing about presentations at confs like INSAR which are so full of field-specific jargon that even *grad-level researchers in other fields* can’t decipher them, much less laypeople.
Magnus Hedemark (he/they) @magnus919.com: Paywalled journals!
@alangwitzki.bsky.social: having to rely on illegal or borderline illegal ways to access non-open source papers/books.
Dr Aimee Fletcher (@aimee_speaks) @aimeespeaks.bsky.social: Agree about pay walls, lack of accessible language and open access communication.
There are hierarchies that exist within academia, and it is exacerbated in academic publishing
Christine Jenkins, Canada @christineajenkins.bsky.social: if you’re not on faculty, the paywalls that exist in order to even read existing research, get ‘covering’ by an institution to submit a proposal, obtain funds or use a license to publish (APC).
Simplified language, Alt text and enabling other accessibility aids like screen readers.
Charlie Hamilton, CRAE: Language, formats, community engagement, and practical application and funding to support living costs.
Steven Kapp @drstevenkapp.bsky.social: There needs to be more open scholarship (including open access publishing, and open data where ethical). Research should be written as understandably as possible, including at least plain language summaries.
KarenAnnTimm (Flutters are my Âûn) @kt-neurorealme.bsky.social: Barriers to research: perpetual exhaustion from ongoing masking leaves little left for research; burnout; presumption of incompetence by educators reduces chances for post-sec; paywalls; inaccessible texts not WCAG aligned for screen readers; unnecessarily long papers can be boring
Ivanova Smith @ivanova1994.bsky.social: there no hybrid option for autistics who can’t travel. Also not allowing autistics to take picture for accessible notes with out difficult steps including requesting permission from every presentation and hard do that when I am late to presentation because kept getting lost.
Gatekeeping information is not fun. And makes so autistics don’t get have access to importantly information
Question 8: Do you have any other topics to discuss?
Charlie Hamilton, CRAE: Compassion and creating more space for multiple perspectives.
Dr. Alyssa (they/them) @yesthattoo.bsky.social: Research aimed at finding out what a few different stakeholder groups think often don’t handle folks who belong to multiple stakeholder groups/have multiple roles very well. Makes it hard for autistic researchers, for example, or autistic parents of autistic kids.
KarenAnnTimm (Flutters are my Âûn) @kt-neurorealme.bsky.social: Can’t be there due to cost-likely not going south of the border for 3 more years—no virtual option? #AccessibilityMatters All #Autistic researchers should be sponsored to attend, should they choose to do so. Research from Autistics is essential as we have the unique lenses needed.
Ivanova Smith @ivanova1994.bsky.social: I think we need more research that debunks Mental age theory and show the harm of that theory and how it used to restrict rights.
Steven Kapp @drstevenkapp.bsky.social: There are various barriers to being an autistic research student and academic. One is in dealing with internal politics/hierarchies and power imbalances when legal, moral, and ethical injustices happen. Some who publicly claim to support us do not practice what they preach.
Christine Jenkins, Canada @christineajenkins.bsky.social: When you fly solo as an independent researcher, these conferences need to be cheaper to attend. Group travel rates, maybe billets or apartment shares. And obviously for now not holding #INSAR in Amerika.
I know 3 besides me who aren’t there. How many more? Are Autistic numbers down?
[response] Dr Aimee Fletcher (@aimee_speaks) @aimeespeaks.bsky.social: My understanding is that there were 200 people who identified as Autistic at booking. Unsure on independent researcher numbers.
I agree that the conference and where they are held create additional financial barriers, ones I will likely navigate going forward as well. It is definitely a challenge.
Christine Jenkins, Canada @christineajenkins.bsky.social: In 2019 John Robison estimated we were 5% so I wonder what this year looked like. There were only 100 community rate spots—and I don’t think I can get one at $130 anymore. I’ll aim for Prague next year.
The irony is we save up our limited funds to attend, then have to endure hearing from some ‘experts’ how we’ve been minimized, overlooked (as #AutisticElders) denigrated, and potentially prevented from existing.
