AutINSAR happens annually during INSAR, the International Society for Autism Research's annual meeting—both live at the conference and simultaneously on Twitter. The discussion provides an opportunity for autism researchers participating and following along to heed the insights and priorities of the autistic population they are supposed to be serving. This matters because, as The Autistic Self Advocacy Network commented during this year's discussion,
"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."This was the third #AutINSAR discussion, after lively events in 2018 at the Rotterdam conference, and in 2017 at the San Francisco conference. This year was slightly different in that it took place among much eye-rolling by #AutINSAR and other autistic and ally attendees over INSAR leadership's declaration that the conference needed to get back to basic biology research.
Essentially, a "return to basics" would keep the focus of autism research on what professionals are interested in, rather than what autistic people need. This would make said research less, rather than more, useful to autistic people who are already here. Instead, researchers who want to affect autistic people's lives in positive ways would do well to take advantage of resources like the AutINSAR discussions.Let’s be clear: Most biology-based autism research is based in preventing, curing, or treating autism. Said “balance" is being pushed by deficit-model advocates who consistently fail to recognize or advocate for the #autistic people who need quality of life-centered research NOW. https://t.co/roxQ8ldDBE— Thinking Person's Guide To Autism (@thinkingautism) May 14, 2019
Here is how this year's AutINSAR discussion went down:
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| The IRL #AutINSAR crew Back row: Emily and Manuel Casanova, Jon Adams, Bret Heasman, Sue Fletcher-Watson, Anne Fritz, Cat Hughes, Aaron Bouma, Bethan Davies, Corina Becker, Stephanie Vreeland, and Steven Kapp Center row: Sara Luterman, Christina Nicolaidis, Lorcan Kenny, Christine Jenkins, and Louise Tardif. Front: TPGA editors Shannon Rosa and Carol Greenburg [image: Crowd of neurodivergent people posing in the corner of the INSAR press room.] |
Welcome to #AutINSAR, a Twitter chat between #ActuallyAutistic people and autism researchers. If you can’t join live, you can continue to answer questions. #INSAR2019
— Thinking Person's Guide To Autism (@thinkingautism) May 2, 2019We will be asking #AutINSAR questions in the format Q1, Q2, etc. Please answer with A1, A2 if you can, for tracking purposes (we will be compiling an article for TPGA as we have for all previous chats). #INSAR2019
— Thinking Person's Guide To Autism (@thinkingautism) May 2, 2019AutINSAR Questions
- Q1: What are your top three priorities for autism research?
- Q2: Which topics do #ActuallyAutistic people discuss that are missing from research conversations?
- Q3: What concerns do you have about the directions in which autism research is headed, based on work presented at #INSAR2019, or in general?
- Q4: Researchers: How do you think your research (or another researcher’s work) will improve the lives of #ActuallyAutistic people who are already here—as opposed to autistic people in future generations?
- Q5: Which co-occurring conditions need more research attention, and why?
- Q6: What are some concerns of minority autistic community members that don’t get enough research attention?
- Q7: What are some barriers make that make autism research results less accessible to #ActuallyAutistic people (cognitive, financial, etc), and how can we reduce them?
- Q8: Any topics we’ve missed that you’d like to discuss?
AutINSAR Participants
Hi I’m Carol Greenburg, one of the editors @thinkingautism Welcome to #AutINSAR Tweetchat!
— Carol Greenburg (@Aspieadvocate) May 2, 2019Hi! We run #AutChat, a weekly Twitter chat for autistic and similarly neurodivergent people. We’ve been running for >4 years. We’ll post some thoughts from our personal accounts too (@theoriesofminds and @endeverstar). #AutINSAR #INSAR2019
— #AutChat mod (@autchatmod) May 2, 2019 hi #AutINSAR! i'm endever*, one of the #AutChat mods. i'm 33, from usa, trans, queer, autistic, crazy, ravenclaw, writer, crafter.
— ⚡️ homo qui vixit (@endeverstar) May 2, 2019 Very excited to be involved in the #AutINSAR chat https://t.co/AKCOC3qdcX
— Cat Hughes (@naturetable) May 2, 2019 Ready and waiting for #AutINSAR.
Last year it was the best part of the conference and a great participatory activity given the constraints of the conference cost and distance for many autistic people.
— aut Sarah (@Sarahmarieob) May 2, 2019 Last year it was the best part of the conference and a great participatory activity given the constraints of the conference cost and distance for many autistic people.
Hello, I am Solveig! Sometimes I dive into chats without introducing myself. Autistic/nonbinary/library profession. #AutINSAR
— Solveig ⚧ - Autistic Acceptance Worldwide (@autisticb4mmr) May 2, 2019 Just realized I forgot to introduce myself on the #AutINSAR chat! I'm Laura - I'm a researcher based at @CRAE_IOE in the UK (London). You can read more about me and my work in this interview with @shannonrosa @thinkingautism: https://t.co/E5MLRpe5Kh
— Laura Crane (@LauraMayCrane) May 2, 2019 I never introduced myself - sorry! I’m a developmental psychologist based at @EdinburghUni in the UK #AutINSAR
— Sue Fletcher-Watson (@SueReviews) May 2, 2019 Oh I guess I also forgot to introduce my me.
Alyssa, non-binary graduate student in neuroscience. I work on brain-computer interfaces for people with ALS, AAC for autistic adults, and general neurodiversity stuff. #ActuallyAutistic
#AutINSAR
— Alyssa (@yes_thattoo) May 2, 2019 Alyssa, non-binary graduate student in neuroscience. I work on brain-computer interfaces for people with ALS, AAC for autistic adults, and general neurodiversity stuff. #ActuallyAutistic
#AutINSAR
Don’t forget to introduce yourselves for #AutINSAR (like I did).
Hi, I’m Shannon Des Roches Rosa from #TPGA. I’m the parent of an autistic dude who is completely awesome. #INSAR2019
— Thinking Person's Guide To Autism (@thinkingautism) May 2, 2019 Hi, I’m Shannon Des Roches Rosa from #TPGA. I’m the parent of an autistic dude who is completely awesome. #INSAR2019
#AutINSAR Hello I'm just introducing myself to the twitter chat, I'm a postdoctoral researcher @CRAE_IOE and I am tweeting along with Anne Fritz from the CRAE account
— Dr Brett Heasman (@Brett_Heasman) May 2, 2019 HelloAll. My name is Aaron Bouma. Military Specialist for Carleton County New Brunswick Canada. #ActuallyAutistic and owner operator of @BoumaWoodwork. Vice chair of Woodstock NB Autism Family Friendship Group. #AutINSAR #INSAR2019
— Aaron Bouma #Militaryspecialist #Carletoncounty (@CANADA566) May 2, 2019 We’re autistic led - equality and diversity especially thru creative endeavour - passionate about involvement of autistic people in research and the arts
@soundcube tweeting is he a scientist who draws or an artist interested in science?
ambitious about autistic people #AutINSAR
— Flow Observatorium (@ObservatoriumF) May 2, 2019 @soundcube tweeting is he a scientist who draws or an artist interested in science?
ambitious about autistic people #AutINSAR
#AutINSAR Am a #ActuallyAutisticScientist who studies overlap with #EhlersDanlosSyndrome (as well as #genetics). Also have Generalized Hypermobile Spectrum Disorder. Nice to meet you all!
— Emily Casanova, PhD (@EmLyWill) May 2, 2019 Hi everyone! I’m an #ActuallyAutistic writer based in Washington DC. I founded @NOSeditorial. #AutINSAR
— Sara Luterman (@slooterman) May 2, 2019 And to introduce myself: I work at @AutisticaUK with our Discover network and our Insight Group- making sure autistic people get heard and involved in research and policy all the way through!
I’m also autistic myself- diagnosed as a young adult #AutINSAR
— Bethan Davies (@BethAnDavies28) May 2, 2019 I’m also autistic myself- diagnosed as a young adult #AutINSAR
Following Shannon’s lead and introducing myself near the end of #autINSAR I am Max Sparrow @UnstrangeMind, autistic author, educator, and member of We Are Like Your Child, a group of neurodivergent writers sharing stories and ideas about how we navigate life.
— We Are Like Your Child (@wearelikeyrkid) May 2, 2019 #autINSAR I’m the founder of the Campaign Against Phony Autism Cures and a co-founder of Autistics for Autistics (A4A), the Canadian self-advocacy organization 🙂 @A4AOntario
— Campaign Against Phony Autism Cures (@AgainstCures) May 2, 2019Thanks for organising #AutINSAR - I am Lorcan, a non-autistic autism researcher who now works for @AutisticaUK trying to bring autism researchers and autistic people closer together via the Discover network, more info: https://t.co/U3ThvTDB2h https://t.co/AlQOT3UZta
— Lorcan Kenny (@LorcanKenny) May 2, 2019 Late introduction from me - I’m Jac, Autistic postdoctoral research associate at Macquarie Uni, Australia, working with @liz_pellicano. Advocate, psychologist, queer, non-binary, they/them. #AutINSAR
— Dr Jac (@JacdenHouting) May 2, 2019 This is Christina Nicolaidis. I’m a physician, researcher, professor, and parent. I do participatory research with autistic adults. I co-Direct AASPIRE (https://t.co/6BqgySQCLx) and am Editor-In-Chief of Autism in Adulthood (https://t.co/CAwzYkT4P4). #AutINSAR
— Christina Nicolaidis, MD, MPH (@cnicolaidis) May 2, 2019 Thanks @thinkingautism for organising such a fun and fascinating #autINSAR I'm Cat. I spent a long time working in autism and mental health research and now work at @AutisticaUK I'm really passionate about seeing autistic people included and active in all levels of research.
— Cat Hughes (@naturetable) May 2, 2019 Intro tweet: I am an autistic filmmaker, advocate, and video game enthusiast/collector #AutINSAR
— GhillieGuide (@Ghillie_Guide) May 2, 2019 Hello. I'm a Catholic priest (@FrMatthewLC) who is #ActuallyAutistic, but who also reads a lot of research on genetics as it relates to bioethical questions as I'm studying a doctoral degree in ethics. So I'm kind of wearing multiple hats in discussions like #AutINSAR.
— Autistic Priest⛪ (FrMatthewLC) (@AutisticPriest) May 3, 2019Q1: What are your top three priorities for autism research?
A1 Research should focus on how to improve quality of life 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. #AutINSAR https://t.co/QjWJWYNIbX
— Autistic Self Advocacy Network (@autselfadvocacy) May 2, 2019 A1 My top for autism research priorities are Jobs, Mental Health Management, and skills building #AutINSAR
— Aaron Bouma at #INSAR2019 (@CANADA566) May 2, 2019 A1: I think it's REALLY important for the autistic community to decide autism research priorities - rather than autism researchers... #AutINSAR
— Laura Crane (@LauraMayCrane) May 2, 2019 A1: At TPGA, we are behind any #autism research that improves the lives of #ActuallyAutistic people and their families. #AutINSAR #INSAR2019
— Shannon Des Roches Rosa (@shannonrosa) May 2, 2019 A1 #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) May 2, 2019 1. Autistic people’s mental health
2. Suicide in autism
3. Supporting autistic people leading participation and involvement in research
A1: I totally 100% agree with @soundcube that these are fundamental priorities. At @CRAE_IOE, we've done co-produced research on mental health (published in @journalautism, which is free to view here: https://t.co/LWSKztqKwa) #AutINSAR
— Laura Crane (@LauraMayCrane) May 2, 2019 A1: The journal Autism Research has published 29 brief commentaries on current gaps in autism research. We're curious to know how others feel! https://t.co/S9Y5h54xqh #AutINSAR
— Spectrum (@Spectrum) May 2, 2019 A1: What many autistic people are telling us is that mental health is a top priority (e.g., @AutisticaUK research) https://t.co/B2yVVRVX0u #AutINSAR
— Laura Crane (@LauraMayCrane) May 2, 2019 a1 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) May 2, 2019 A1. One of my top priorities is the need for reasearch on QoL for autistic elders like me (55 yrs old) and my 91-year old #Actually Autistic Dad #AutINSAR
— Carol Greenburg (@Aspieadvocate) May 2, 2019 A1 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) May 2, 2019 A1: Sleep, suicidality, and seizure research are my personal top three issues. #AutINSAR
— Sara Luterman (@slooterman) May 2, 2019 A1: top three priorities
1. Co-production being done meaningfully and not to fulfill diversity criteria but in all areas.
2. Practical, applied and applicable research.
3. Lifetime research- we are young and old! #AutINSAR https://t.co/so8NGPFIcH
— aut Sarah (@Sarahmarieob) May 2, 2019 1. Co-production being done meaningfully and not to fulfill diversity criteria but in all areas.
2. Practical, applied and applicable research.
3. Lifetime research- we are young and old! #AutINSAR https://t.co/so8NGPFIcH
#autinsar A1. 1) more participatory research throughout the entire research process. From writing the grants, to designing the study, to analysing and collecting data, to taking the findings back to the community/ developing leads for further research, building future leaders
— CRAE (@CRAE_IOE) May 2, 2019 A1: at @AutisticaUK we are interested in research into the community priorities we established in a priority setting partnership https://t.co/8x4SRiEMGf but there are some qs not in here that are also a priority for us, like addressing early mortality in autistic people #AutINSAR
— Lorcan Kenny (@LorcanKenny) May 2, 2019 A1: 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 #AutINSAR
— Lorcan Kenny (@LorcanKenny) May 2, 2019 yes! i feel like most outcome measures in research are "acts less autistic now yay" (:/) rather than "better quality of life, better mental health, etc" #AutINSAR https://t.co/Fp4hIAV81J
— ⚡️ homo qui vixit (@endeverstar) May 2, 2019 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 drawing boards. #AutINSAR
— aut Sarah (@Sarahmarieob) May 2, 2019 We need to go back to most drawing boards. #AutINSAR
ICYMI: We just published a news story on a study identifying predictors of early death in autism: https://t.co/86RocL9dfo #AutINSAR
— Spectrum (@Spectrum) May 2, 2019 A1
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
— #AutChat mod (@autchatmod) May 2, 2019 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
A1: literally exactly these three, except in reverse order. #AutINSAR https://t.co/B4X93ztE8Y
— Dr Jac (@JacdenHouting) May 2, 2019 A1. 2) to work across discipline boundaries - its not biological versus non-biological!
— CRAE (@CRAE_IOE) May 2, 2019 #autinsarDouble-empathy work such as by @milton_damian. #AutINSAR
— Louise Âû (Louise Tardif is at INSAR 2019!) (@au_louise) May 2, 2019 A1. 3) mental health research. Yet It is important for the autistic community to decide autism research priorities. Not the autism researchers! #autinsar
— CRAE (@CRAE_IOE) May 2, 2019 A1: 1) Helping #ActuallyAutistic young adults to thrive in either education or employment, 2) investigating long-term consequences of ABA, 3) reducing suicidality in autistic people *cough* of a certain age. #AutINSAR
— Douglas Bass (@douglasbass) May 2, 2019 This is personally important to me as the #ActuallyAutistic Mom than #ActuallyAutistic teen who we are trying to help prepare for a transition to adulthood that is successful, first and foremost, in HIS eyes. #AutINSAR
— Carol Greenburg (@Aspieadvocate) May 2, 2019 A1: Only 3? Autism across the lifespan, co-occurring health conditions, and how to improve access to communication (incl how to support families in *IMPLEMENTING*, not just obtaining, AAC.) #AutINSAR
— Julia Bascom (@JustStimming) May 2, 2019 A1 a research priority is best supports for anorexia #ActuallyAutistic. #AutINSAR
— Louise Âû (Louise Tardif is at INSAR 2019!) (@au_louise) May 2, 2019 A1:
1) #AAC as you can guess because it’s what I do.
2) Suicidality and mental health in general
3) Sleep
#AutINSAR
— Alyssa (@yes_thattoo) May 2, 2019 1) #AAC as you can guess because it’s what I do.
2) Suicidality and mental health in general
3) Sleep
#AutINSAR
A1: (1) Identifying alternatives to, e.g., socially performative therapy/counseling which might not be suitable; (2) Examining whether studies showing “recovery” in fact just show deep masking; (3) Developing understanding of effects of diagnosis when late in life. #AutINSAR https://t.co/Pv2ixjVldn
— Hello. My name is Bix. (@bixmediocre) May 2, 2019 A1: Hard to narrow down to three! I think research into autistic people dying younger on average needs to be a priority (including suicide, epilepsy, access to health care) and as a social worker I would like to see abuse of autistic children made a research priority. #AutINSAR
— Brooke Winters (@brookewinters33) May 2, 2019 Q1) To focus on research that supports existing autistic people and how we can inclusion and acceptance.
No cures and nothing that supports harmful therapies and treatments. Yes, this includes ABA.#AutINSAR https://t.co/KKM6gCNF3W
— Milla the four-eyed, nerdy princess! (@subtlykawaii) May 2, 2019 No cures and nothing that supports harmful therapies and treatments. Yes, this includes ABA.#AutINSAR https://t.co/KKM6gCNF3W
Can we just agree that we’d love for all the health mysteries that are hinted at need to actually be recognised, understood and much easier to gain information/ diagnosis about.
#AutINSAR
— aut Sarah (@Sarahmarieob) May 2, 2019 #AutINSAR
I am not autistic but my daughter is and we have found that there is a barrier to treatment because of her complex needs due to co-occurring diagnoses. I would like to see more research on therapies that target these complex cases. #AutINSAR
— Amanda Rackerby (@RackerbyAmanda) May 2, 2019 I am also concerned with the fact that many autistic women have great skills, like my daughter, but because of many reasons are unable to enter the working world. I would like to see more research on females w/ autism and what the barriers are to employment. #AutINSAR
— Amanda Rackerby (@RackerbyAmanda) May 2, 2019 As an #ActuallyAutistic woman who has had many such work-world difficulties, this answer resonates with me. #AutINSAR
— Carol Greenburg (@Aspieadvocate) May 2, 2019 I see different levels of needed research: 1) long term (10+years) for therapy (drug and behavioral/support) development; 2) immediate interventions to target extreme distress reduction and increase life expectancy for people with ASD and their families. #AutINSAR
— Amanda Rackerby (@RackerbyAmanda) May 2, 2019 A1: Priority 1 is an accurate accounting of autistic people at all ages, both in the U.S. and worldwide. We also need far more research on effective supports across the lifespan, and far more collaboration between researchers and #ActuallyAutistic folks. #AutINSAR #INSAR2019 https://t.co/0W3eCFxImv
— Steve Lieberman (@stevemlieberman) May 2, 2019 -Understanding long-term effects of ABA on the autonomy of autistics -- especially with respect to keeping ourself safe from abusive situations.
-Research that includes autistics of all age
-Better ability to recognize autism in girls and people of color
A1 #AutINSAR https://t.co/PWsd89vdsp
— Solveig ⚧ - Autistic Acceptance Worldwide (@autisticb4mmr) May 2, 2019 -Research that includes autistics of all age
-Better ability to recognize autism in girls and people of color
A1 #AutINSAR https://t.co/PWsd89vdsp
I’m also interested in more gender studies specific to neurodivergent people in general — something that would lead us to an easier transition process for those of us who want/need it.
I’m talking autistic transgender studies.#AutINSAR
— Solveig ⚧ - Autistic Acceptance Worldwide (@autisticb4mmr) May 2, 2019 I’m talking autistic transgender studies.#AutINSAR
A1:
1) how to improve life outcomes (health, employment, inclusion, wellbeing);
2) how to treat co-occurring conditions;
3) how to address needs of autistic adults with intersectional identities (eg related to gender, race, sexuality). #AutINSAR
— Christina Nicolaidis, MD, MPH (@cnicolaidis) May 2, 2019 1) how to improve life outcomes (health, employment, inclusion, wellbeing);
2) how to treat co-occurring conditions;
3) how to address needs of autistic adults with intersectional identities (eg related to gender, race, sexuality). #AutINSAR
A1 1) research to ensure reliable communication across the autism spectrum, 2) research on priorities values across autism stakeholders in their own communities, 3) research to try to end abuse against autistic people. #autINSAR
— Steven Kapp (@drstevenkapp) May 2, 2019 I’d like to see a comprehensive de-bunking review of the main forms of autism pseudoscience that can be shared with health professionals and researchers. #autINSAR
— Campaign Against Phony Autism Cures (@AgainstCures) May 2, 2019 Sleep research, why do we experience so much suicidal ideation, how can neurotypical people communicate with us better (note how I phrased that!)#AutINSAR #INSAR2019
— 🏳️🌈Future Dr Valour- They Who Rant 🏳️🌈 (@ValourRain) May 2, 2019 A1: At #APA2019 I’ll be presenting on research priorities from within the autistic community. #AutINSAR
— HelenRottier (@helenrottier) May 2, 2019 A1:
1. trauma - Is anyone doing research into how a lifetime of small compromises and invalidation is traumatic? cPTSD as often comorbid?
2. Ontology - has anyone taken a crowd-sources inventory of autistic traits?
3. Post-behavioral diagnostic criteria.#AutINSAR
— your friend myk (@mykola) May 2, 2019 1. trauma - Is anyone doing research into how a lifetime of small compromises and invalidation is traumatic? cPTSD as often comorbid?
2. Ontology - has anyone taken a crowd-sources inventory of autistic traits?
3. Post-behavioral diagnostic criteria.#AutINSAR
A1:
1) How diagnostic criteria applies to demographics not well represented in existing research.
1) Developing understanding of communication in relationships between autistic and NT.
3) Analysis of social process of disclosing diagnosis in masking autistic adults.#AutINSAR
— GhillieGuide (@Ghillie_Guide) May 2, 2019 1) How diagnostic criteria applies to demographics not well represented in existing research.
1) Developing understanding of communication in relationships between autistic and NT.
3) Analysis of social process of disclosing diagnosis in masking autistic adults.#AutINSAR
R1 #AutINSAR #INSAR2019 Les effets négatifs, traumatisants des interventions recommandées mais qui peuvent être, dans la pratique, irrespectueuses ou violentes dans les différents milieux de vie (école, famille, services, travail)
— Neurodiversité Art (@LucilaGuerrero_) May 2, 2019 [R1 #AutINSAR #INSAR2019 the negative, traumatic effects of the recommended interventions but which can be, in practice, disrespectful or violent in the different living environments (school, family, services, work)]
A1 #AutINSAR
1. Treatment of hypo- and hyperkalaemic sensory overstimulation and cofactors such as iNOS overproduction
2. autistic apraxia (body-mind disconnect)
3. #CRPD violations and trauma in ABA.
4. RCCX Theory.
(Ja, I know you said three...) https://t.co/qHpLzU9f4p
— Tania | AutisticStrategies.Net | #OptimiseAutism (@ekverstania) May 3, 2019 1. Treatment of hypo- and hyperkalaemic sensory overstimulation and cofactors such as iNOS overproduction
2. autistic apraxia (body-mind disconnect)
3. #CRPD violations and trauma in ABA.
4. RCCX Theory.
(Ja, I know you said three...) https://t.co/qHpLzU9f4p
#AutINSAR
The link between self-esteem issues, autism and suicide/suicide attempts/suicidal ideation. Anxiety and depression in relation to autism. Platforms to enable autistic people to find jobs, and to help with work related issues.
— Rowan (@Rowan55388496) May 3, 2019The link between self-esteem issues, autism and suicide/suicide attempts/suicidal ideation. Anxiety and depression in relation to autism. Platforms to enable autistic people to find jobs, and to help with work related issues.
Q2: Which topics do #ActuallyAutistic people discuss that are missing from research conversations?
A2 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. We promote a CBPR (Community-Based Participatory Research) approach to autism research. #AutINSAR
— Autistic Self Advocacy Network (@autselfadvocacy) May 2, 2019 A2. I’m glad to see that sensory processing is starting to become more of a research interest, but it still feels like it gets low priority relative to how significant it is in my personal experience. #AutINSAR #INSAR2019 https://t.co/TWJbGhMsWM
— codeman38 (@codeman38) May 2, 2019 A2. Other topics that are frequently discussed within the autistic community but seem much less common in research (at least from my experience): how autism interacts with gender (both cis and trans); experiences of adult autistics. #AutINSAR #INSAR2019
— codeman38 (@codeman38) May 2, 2019 A2 AFAICT, executive dysfunction! and supports to cope with it. #AutINSAR
— ⚡️ homo qui vixit (@endeverstar) May 2, 2019 A2 How many areas are overlooked. Access to resources in rural areas, including mental health as well. We need to change that and guide all areas to have a voice. #AutINSAR #INSAR2019
— Aaron Bouma #Militaryspecialist #Carletoncounty (@CANADA566) May 2, 2019 A2: I know nothing about it, but keep hearing about #EhlersDanlosSyndrome in relation to autism (from autistic people). Nice to see some work presented on it at #INSAR2019 https://t.co/wUetdbTdQ6 #AutINSAR
— Laura Crane (@LauraMayCrane) May 2, 2019 A2: Everything. MOTOR DIFFERENCES, including inertia. Mental health, addiction, and suicide. Actual reasons behind behaviors. Different responses to different kinds of prompts or support. Burnout. Fluctuating skills. Actual outcomes of ABA and other interventions. (1/3) #autinsar
— Julia Bascom (@JustStimming) May 2, 2019 A2: Responses to medications. Hypermobility + other common co-occuring health conditions. Ways to support daily living skills. Ways to get free. Access hacks. Experiences of abuse and neglect. Autistic parenting. AT. Combatting stigma, promoting inclusion. (2/3) #autinsar
— Julia Bascom (@JustStimming) May 2, 2019 A2: Also we do actually talk a lot about ACTUAL heterogeneity--we just don't do it in public, because autism researchers have proven over and over again that they aren't ready to handle it. (3/3) #autinsar
— Julia Bascom (@JustStimming) May 2, 2019 A2 We are seeing more of these topics covered at #INSAR2019 than in years past, which gives me hope. Not perfect, but some improvement. #AutINSAR
— Thinking Person's Guide To Autism (@thinkingautism) May 2, 2019 A2 also the broad range of queer/trans identities found in our community, including how we (especially aac users) have conversations about identity, sex ed, and consent #AutINSAR
— ⚡️ homo qui vixit (@endeverstar) May 2, 2019 A2 We talk a lot about our experiences of other people, of physical settings, of practical daily life demands. These aren’t technically “about” autism but they are major areas of concern for many autistic folks. (e.g., food prep, navigating transportation) #AutINSAR
— #AutChat mod (@autchatmod) May 2, 2019 A2 #AutINSAR #INSAR2019
-Definitely Ageing and care changes needed over the lifespan
-Ways trauma effects autistic people and causes - betrayal trauma is a huge issue as we ‘love hard forget not’ as it were
-DSM change esp CatA in PTSD for autistic people - we lose people this way
— Flow Observatorium (@ObservatoriumF) May 2, 2019 -Definitely Ageing and care changes needed over the lifespan
-Ways trauma effects autistic people and causes - betrayal trauma is a huge issue as we ‘love hard forget not’ as it were
-DSM change esp CatA in PTSD for autistic people - we lose people this way
A2 involving high-support needs individuals in all kinds of research. #AutINSAR
— Louise Âû (Louise Tardif is at INSAR 2019!) (@au_louise) May 2, 2019 A2: what’s missing?
Conversations miss the personhood of autistic people, the implications research can have on understanding/ perceptions and that autistic people want to lead full lives we just may need support (school/ work/ health/ care/ leisure).#AutINSAR https://t.co/QQ8CoKYAhz
— aut Sarah (@Sarahmarieob) May 2, 2019 Conversations miss the personhood of autistic people, the implications research can have on understanding/ perceptions and that autistic people want to lead full lives we just may need support (school/ work/ health/ care/ leisure).#AutINSAR https://t.co/QQ8CoKYAhz
A2: So, so many! Basically everything to do with adulthood. Trauma. Long-term consequences of early intervention. #AutINSAR
— Dr Jac (@JacdenHouting) May 2, 2019 A2: I am not autistic so can't speak for autistic people's interests but from conversations I've had it is not always about what is absent entirely but also if the proportion of interest in different topics reflect community priorities #AutINSAR
— Lorcan Kenny (@LorcanKenny) May 2, 2019 A2: some examples include sleep difficulties, food and eating challenges, managing physical health difficulties, keeping employment (rather than simply attaining employment), assessing how autistic involvement actually changes how research gets done #AutINSAR
— Lorcan Kenny (@LorcanKenny) May 2, 2019 A2: I don’t think I’ve ever seen the link between Ehlers-Danlos and autism discussed before. It doesn’t affect me personally, but it is a major source of pain for my friends. I’m also thrilled to see emerging work from @aaspireproject on #AutisticBurnout. #AutINSAR
— Sara Luterman (@slooterman) May 2, 2019 A2: I think the thing really missing from research conversations is how we better include and involve autistic people as research partners. I'm a big fan of the work being led by @cnicolaidis @dora_raymaker in this respect! #AutINSAR
— Laura Crane (@LauraMayCrane) May 2, 2019 A2: To find out more about the @aaspireproject, see this recent paper in @journalautism: https://t.co/E8d7ANMGVu #AutINSAR
— Laura Crane (@LauraMayCrane) May 2, 2019 A2 researching the importance of connecting with each other and our #ActuallyAutistic community. #AutINSAR
— Louise Âû (Louise Tardif is at INSAR 2019!) (@au_louise) May 2, 2019 A2 So many things! Autistic culture, shared understanding and creativity are hugely overlooked. #AutINSAR https://t.co/upYwPbnduV
— Cat Hughes (@naturetable) May 2, 2019 Q2: Some things #ActuallyAutistic people talk about more than researchers: trauma, PTSD, c-PTSD, mid-life Autistic burnout (losing skills and coping abilities after years of struggle/masking), Autistic inertia #autINSAR
— We Are Like Your Child (@wearelikeyrkid) May 2, 2019 A2 (continued) Many Autistic adults need job opportunities that are *not* math and tech oriented and need researchers to help break the stereotypes behind the job program skew #autINSAR
— We Are Like Your Child (@wearelikeyrkid) May 2, 2019 A2 the developing world! I want to know more about my peers across the world. #AutINSAR
— Louise Âû (Louise Tardif is at INSAR 2019!) (@au_louise) May 2, 2019 #autINSAR A2. From conversations with autistic people, CRAE has observed a mismatch between the kind of research that is conducted and the kind of research autistic people would like to see. The funding landscape needs better alignment with autistic research priorities.
— CRAE (@CRAE_IOE) May 2, 2019 A2: Ehlers Danlos, part time aac use, trauma, anything related to adults, how to provide supports for people with significant needs while maintaining autonomy and civil rights #AutINSAR
— Alyssa (@yes_thattoo) May 2, 2019 Oh and myotonic muscular dystrophy:
Type 1 (childhood onset) known to be associated with autism. Type 2 (adult onset)? No one knows. Maybe check?#AutINSAR
— Alyssa (@yes_thattoo) May 2, 2019Type 1 (childhood onset) known to be associated with autism. Type 2 (adult onset)? No one knows. Maybe check?#AutINSAR
A2 I want to know more how are voices are heard in policy development. #AutINSAR
— Louise Âû (Louise Tardif is at INSAR 2019!) (@au_louise) May 2, 2019 A2: Keeping stims hidden, self-care strategies, exhaustion from trying to determine how a certain interaction went, self-esteem issues, being considered lazy or careless #AutINSAR #INSAR2019
— Douglas Bass (@douglasbass) May 2, 2019 A2 It shouldn’t be revolutionary that autistic people might actually make pretty accurate inferences about the possible processes behind autistic thought, behaviour and processing (but it feels that way).
#AutINSAR
— aut Sarah (@Sarahmarieob) May 2, 2019 #AutINSAR
A2 I’d like more research and ensuing documentation of Autistics' atypical or paradoxical reactions to medications. More bluntly put, I find what I called the “medication mambo” a horrible trial for our family every time we have to do it to help our autistic son. #AUTINSAR
— Carol Greenburg (@Aspieadvocate) May 2, 2019 A2: Ehlers-Danlos syndrome (my spelling might be wrong) #AutINSAR
— Sue Fletcher-Watson (@SueReviews) May 2, 2019 I research participatory research methods (yes, it’s very meta). I *hope* this will contribute to more genuine and meaningful co-production of autism research with autistic people - resulting in research that actually addresses our #ActuallyAutistic priorities. #AutINSAR
— Dr Jac (@JacdenHouting) May 2, 2019 You can see some of Dr. de Houting’s work on participatory autism research here: https://t.co/IvNmXsk8wT #AutINSAR #INSAR2019
— Shannon Des Roches Rosa (@shannonrosa) May 2, 2019 A2 Trauma-informed and autism I formed maternity and pregnancy supports. #AutINSAR
— Louise Âû (@au_louise) May 2, 2019 A2: Treating us like human beings would be a start. Certainly there needs to be research on the harm certain “treatments” that silence visible indications of underlying distress have on #ActuallyAutistic people. #AutINSAR #INSAR2019 https://t.co/3Se4QE8z8T
— Steve Lieberman (@stevemlieberman) May 2, 2019 Research is almost entirely focused on children, and I can't find a lot out there with respect to adult autistics.
Then, the research is almost entirely focused on things like neurology and DNA and studying complex proteins... and nothing to do with quality of life. #AutINSAR A2 https://t.co/l3IVKwMxNi
— Solveig ⚧ - Autistic Acceptance Worldwide (@autisticb4mmr) May 2, 2019 Then, the research is almost entirely focused on things like neurology and DNA and studying complex proteins... and nothing to do with quality of life. #AutINSAR A2 https://t.co/l3IVKwMxNi
A random thought, but I am wondering if we can talk about how autistics seem to express emotions differently than allistics. For instance... dad thought I was doing fine because I was humming to myself, but I was humming to myself because I was VERY MUCH NOT OKAY. #AutINSAR
— Solveig ⚧ - Autistic Acceptance Worldwide (@autisticb4mmr) May 2, 2019 Oooh, yes! I’ve had *so many* interactions where my body language was misinterpreted and I legit didn’t even realize that’s what was happening until someone explained it explicitly. #AutINSAR #INSAR2019 https://t.co/ep4D1fhXU7
— codeman38 (@codeman38) May 2, 2019 I’m working on a chapter about cross-neurotype communication connecting to cross-cultural communication and I honestly think that fits what I’m going to be talking about. #AutINSAR
— Alyssa (@yes_thattoo) May 2, 2019 In Canada some of what we talk about is: accessibility in public spaces. Poverty. Inaccessibility in employment. HIV. Sex and safety around dating. Communication barriers to accessing medical care. Need for trauma-informed care. #autINSAR
— Campaign Against Phony Autism Cures (@AgainstCures) May 2, 2019 Poverty is a huge issue in our community in Canada and no one is researching it. We need hard data to work for change. #autINSAR. @A4AOntario
— Campaign Against Phony Autism Cures (@AgainstCures) May 2, 2019 When we measure sensory variability in #ActuallyAutistic people using current methods, we’re measuring behavior, not people’s internal experience or biomarkers. Behavior is not a reliable indicator of how distressing an experience is. #INSAR2019— Sara Luterman (@slooterman) May 2, 2019
Especially not when therapy explicitly teaches us to act like we’re not in distress... #AutINSAR
— Alyssa (@yes_thattoo) May 2, 2019 #AutINSAR I'd love to see more conversations on supporting #ActuallyAutistic people's civic and political participation. From activism and self-advocacy to joining and taking part in political parties, movements, civil society and in communities more broadly. #INSAR2019 https://t.co/8kixA1NSMB
— Adrian Carroll (@adrian_carroll) May 2, 2019 I would like to see that too. I’m #ActuallyAutistic, from the U.S., and volunteered for three local campaigns leading up to the midterms. On a national level, I’ve been honored to volunteer for #PostCardsToVoters for almost all of the two years it has existed so far. #AutINSAR https://t.co/gfNg5MsWE0
— Carol Greenburg (@Aspieadvocate) May 2, 2019 — S Owocki (@swahkee) May 2, 2019
A2. Burnout, masking, trauma, bullying, evolving diagnostic criteria (e.g. not based on allistic observation of traumatizes white male children). How do we reach the many undiagnosed adults suffering in isolation and alienation?#AutINSAR
— your friend myk (@mykola) May 2, 2019 A2: A big thing that’s left out seems to be autistic burnout and suicidal ideation, a lot of the stats that advocates need to make their point on this topic are community generated/not scientifically recognized! #AutINSAR
— GhillieGuide (@Ghillie_Guide) May 2, 2019 A2: Large study on autistic adults and #burnout; more research on positive psychology and approaches; identify "problems" that are actually social constructs to shift the narrative. #ActuallyAutistic #autINSAR #INSAR2019
— Janet Mulligan Bowen, MLS (@theScootorian) May 3, 2019 A2 The small things that make life difficult, people staring at autistic children in shops, thinking autistic people rude if they sometimes don't know what to say - because, in their view, if you know you are autistic you can do something about it, but choose not to. #AutINSAR
— Rowan (@Rowan55388496) May 3, 2019Q3: What concerns do you have about the directions in which autism research is headed, based on work presented at #INSAR2019, or in general?
A3 In General, I’m seeing too much suppressive behaviour research and also cure research. We #ActuallyAutistic people don’t want to be cured. Organizations putting money into this doesn’t help anybody now! #AutINSAR #INSAR2019
— Aaron Bouma #Militaryspecialist #Carletoncounty (@CANADA566) May 2, 2019 A3 I’m very concerned about research being translated uncritically into tech for fine-grained behavioral control and surveillance. We urgently need research on harms done including when implemented as intended. #AutINSARhttps://t.co/52vayHFOJt
— theories of minds (@theoriesofminds) May 2, 2019 A3 #AutINSAR @AutismINSAR has a skewed understanding of "balance". Adult studies, the disability studies field, social work, optimal outcomes as defined by us, participatory research... https://t.co/84QzML6MbG
— Louise Âû (Louise Tardif is at INSAR 2019!) (@au_louise) May 2, 2019 A3: I have lots of concerns about how much reluctance there seems to be about meaningfully including autistic people in research (i.e., not just as research participants) from certain quarters... #AutINSAR
— Laura Crane (@LauraMayCrane) May 2, 2019 A3
Organisations that are gatekeeping and push research topics
Research that has links with organisations determined to cure or prevent us even if that’s not an ‘obvious goal’ it’s an ‘own goal’ as far as autistic people are concerned
Research ‘without us’
#AutINSAR #INSAR2019
— Flow Observatorium (@ObservatoriumF) May 2, 2019 Organisations that are gatekeeping and push research topics
Research that has links with organisations determined to cure or prevent us even if that’s not an ‘obvious goal’ it’s an ‘own goal’ as far as autistic people are concerned
Research ‘without us’
#AutINSAR #INSAR2019
A3: the view that biological and non-biological research should happen separately in silos - we stand to gain a lot from basic science (e.g., in genetics) IF it is done from an autistic-informed perspective and IF it is communicated in a safe, sensible way #AutINSAR
— Lorcan Kenny (@LorcanKenny) May 2, 2019 A3: Also concerned by researchers who talk about their research in a way that suggests they have never met nor spoken with autistic people about how their research relates to their lives #AutINSAR
— Lorcan Kenny (@LorcanKenny) May 2, 2019 A3: There still seems to be a lot of research that happens without having the question ‘how will this benefit autistic people’ running right through from the first initial idea #AutINSAR https://t.co/B299HKDHOM
— Bethan Davies (@BethAnDavies28) May 2, 2019 A3: One simple way to ensure your research does benefit autistic people is to include autistic people from the very beginning - this still seems quite a novel approach in some places #AutINSAR
— Bethan Davies (@BethAnDavies28) May 2, 2019 Considering how many contradictory neuroanatomy results there are, for example, plus psychology’s replication crisis in general... yeah I’ve got this concern too. #AutINSAR https://t.co/lftleLIFUb
— Alyssa (@yes_thattoo) May 2, 2019 A3 see my previous comment on outcome measures is probably my main concerns - if we're measuring the wrong things, we get lauded "evidence based practices" that are actually intensely harmful #AutINSAR
— ⚡️ homo qui vixit (@endeverstar) May 2, 2019 A3 A concern is a lack of discussion on research to practice. #AutINSAR
— Louise Âû (@au_louise) May 2, 2019 A3 We are concerned about the amount of autism research that centers around causation rather than around how best to support our community over a lifetime. #AutINSAR https://t.co/fHdZ2w6Ru2
— Autistic Self Advocacy Network (@autselfadvocacy) May 2, 2019 A3 We hope to see more research that tackles issues around access to long term services and supports that allow us to thrive in the community. #AutINSAR
— Autistic Self Advocacy Network (@autselfadvocacy) May 2, 2019 A3: I am frustrated by the amount of research that assumes being indistinguishable from a neurotypical person behaviorally is the same thing as not being in distress. #AutINSAR
— Sara Luterman (@slooterman) May 2, 2019 A3: I'm concerned about the focus on treatments to literally alter the brains of autistic people rather than change a single thing about the world around us. I'm concerned that success in these studies is measured by how much we blend in, not on how we feel about it. #autinsar
— Julia Bascom (@JustStimming) May 2, 2019 A3 Really surprised by an apparent reluctance from some to include autistic people in research, and a discomfort in communicating findings to them. If communicating research to autistic people makes you uncomfortable, who is it designed to benefit. #AutINSAR https://t.co/fTQC3HwXfY
— Cat Hughes (@naturetable) May 2, 2019 A3: research concerns
Research is so connected but is often segregated. Ideas aren’t cross referenced with those it implicates. I’m concerned that participation isn’t viewed for its value but rather it’s ‘burden’. Going down the wrong rabbit holes. #AutINSAR https://t.co/U2l7Eptgbn
— aut Sarah (@Sarahmarieob) May 2, 2019 Research is so connected but is often segregated. Ideas aren’t cross referenced with those it implicates. I’m concerned that participation isn’t viewed for its value but rather it’s ‘burden’. Going down the wrong rabbit holes. #AutINSAR https://t.co/U2l7Eptgbn
Q3: After seemingly taking small steps towards inclusion in recent years, the move towards more biological research and less inclusive attitudes to Autistic people is very disappointing #AutINSAR
— Dr Jac (@JacdenHouting) May 2, 2019 A3 It’s great to see more research focused on the harm of restraints and seclusion. We need even *more* dismantling of the harms that have become standard treatment for Autistic students, clients, and patients. #autINSAR
— We Are Like Your Child (@wearelikeyrkid) May 2, 2019 A3: I’m hugely concerned that fundamental scientists rarely see community perspectives as relevant to their lab work. This work may yield impact in a decade or more so all the more reason to make sure it’s at the cutting edge of community priorities.
#AutINSAR
— Sue Fletcher-Watson (@SueReviews) May 2, 2019 #AutINSAR
A3: I’m frustrated with the extent to which autistic autism researchers are assumed to be writing only about our own experiences, and not to be doing “hard” science.
My PhD is going to be in neuroscience. I do brain computer interfaces. I can do hard science. #AutINSAR
— Alyssa (@yes_thattoo) May 2, 2019 My PhD is going to be in neuroscience. I do brain computer interfaces. I can do hard science. #AutINSAR
#autINSAR A3. As mentioned previously - there still seems to be a lack of research that meaningfully includes autistic people throughout the entire research processes.
— CRAE (@CRAE_IOE) May 2, 2019 A3: Anything about us without us. Sneaky high-tech efforts for reprogramming, surveillance and control. Agendas to breed autism out of existence #AutINSAR #INSAR2019
— Douglas Bass (@douglasbass) May 2, 2019 A3 concerned about the continued proliferation of animal models. Studying animals to understand autism reduces complex neurological states of being to observable behaviors only. Sensationalized reporting of mouse model studies harm us. #autINSAR
— We Are Like Your Child (@wearelikeyrkid) May 2, 2019 A3 I’m concerned about technology based monitoring systems that aren’t co-created around an autistic-identified need.
Massive risk of normalisation here as well as intrusion and privacy issues. #AutINSAR https://t.co/IBinAw05MD
— Sue Fletcher-Watson (@SueReviews) May 2, 2019 Massive risk of normalisation here as well as intrusion and privacy issues. #AutINSAR https://t.co/IBinAw05MD
A3: The amount of work being done on supports, aging issues, and anything that looks beyond a childhood experience or a clump of cells is minimal. There needs to be a rebalancing of research priorities, and the sooner the better. #AutINSAR #INSAR2019 https://t.co/kjjf14u8jy
— Steve Lieberman (@stevemlieberman) May 2, 2019 The research studies I have personally taken part in are structured in a way that it was literally impossible for them to learn anything accurate about autism.
Like, there was no way to tell the researchers "You're asking all the wrong questions!!!"#AutINSAR https://t.co/EgEARKNRlX
— Solveig ⚧ - Autistic Acceptance Worldwide (@autisticb4mmr) May 2, 2019 Like, there was no way to tell the researchers "You're asking all the wrong questions!!!"#AutINSAR https://t.co/EgEARKNRlX
Another ‘fun’ thing is when researchers think they’re asking one thing but are actually asking another.
One classic example is “Have you heard voices nobody else did?” - supposed to be about audio hallucinations, but also true for hypersensitive hearing. #AutINSAR #INSAR2019
— codeman38 (@codeman38) May 2, 2019 One classic example is “Have you heard voices nobody else did?” - supposed to be about audio hallucinations, but also true for hypersensitive hearing. #AutINSAR #INSAR2019
Hi yes I hear things other people don’t. For example, I still hear 20kHz sounds! #AutINSAR
— Alyssa (@yes_thattoo) May 2, 2019Also I absolutely have unexplained bruises. Because I can’t keep track of all the walls, desks, cabinets, etc. I walk into, not because I bruise easily. #AutINSAR
— Alyssa (@yes_thattoo) May 2, 2019 I say no when I’m asked because it’s just a yes or no question. And I don’t want to be pathologized based on something they badly interpret.
See... I can’t do yes/no questions like this. #AutINSAR
— Solveig ⚧ - Autistic Acceptance Worldwide (@autisticb4mmr) May 2, 2019 See... I can’t do yes/no questions like this. #AutINSAR
A3 How can we prioritize funding for practical and immediate quality of life concerns in autism research and at INSAR? Can we understand that #neurodiversity means supporting both strengths and weaknesses, and make space for it? #autinsar
— Steven Kapp (@drstevenkapp) May 2, 2019 A3: Vasopressin! #AutINSAR
— Damian Milton (@milton_damian) May 2, 2019 A3: Robots for social interaction, I mean please. #AutINSAR
— Damian Milton (@milton_damian) May 2, 2019 CW suicide
A3 Quite frankly, I am concerned by sessions on suicidality in autistic people that don't feel accessible to me, as an autistic person with an autistic sibling who died by suicide who has PTSD related to that.
I don't know what to do about this however. #AutINSAR
— S Owocki (@swahkee) May 2, 2019 A3 Quite frankly, I am concerned by sessions on suicidality in autistic people that don't feel accessible to me, as an autistic person with an autistic sibling who died by suicide who has PTSD related to that.
I don't know what to do about this however. #AutINSAR
#AutINSAR Pathologization of autism in autism research: https://t.co/f6INnSFcTk
— AutisticScienceLady (@AspieHuman) May 2, 2019 A friend of mine may not be able to finish their dissertation as it is stuck in ethics cos they’re being restrictively overprotective. The study is of autistic ppl she works with every day! #AutINSAR
— Stu (Autism ACCEPTANCE not just awareness) Ferrol (@TheFerretLives) May 2, 2019 A3: Those who are gatekeeping agendas and they don't walk the talk, big pharmas/ABA organisations funding some good research thinking they can get away (And they do!) Robots to teach emotions, lack of a humanised philosophical approach, tokenistic autistic participation #AutINSAR
— Dr Georgia Pavlopoulou (@JoPavlopoulou) May 2, 2019 A3: The primary concern I have with the current direction of autism research is a failure to seperate from the traditional care and support structures of government.
I fear the business of autism being put ahead of the support of autistic people!#AutINSAR
— GhillieGuide (@Ghillie_Guide) May 2, 2019 I fear the business of autism being put ahead of the support of autistic people!#AutINSAR
A3. Exploring genetics can be good if used to help those diagnosed early by such methods. However, I fear that our current mindset that devalues autistic life will mean that genetics is often used to abort babies because they're autistic. #AutINSAR https://t.co/B4WaaLw6fv
— Autistic Priest⛪ (FrMatthewLC) (@AutisticPriest) May 3, 2019 A3: Anything about us without us. Sneaky high-tech efforts for reprogramming, surveillance and control. Agendas to breed autism out of existence #AutINSAR #INSAR2019
— Douglas Bass (@douglasbass) May 2, 2019A3
Very worried about future uses of genetic testing. When my sons were diagnosed (before I was) I had many, many comments to the effect that at least I knew now, so I wouldn't have more children. As if the world would be better off without autistic people in it. #AutINSAR
— Rowan (@Rowan55388496) May 3, 2019Very worried about future uses of genetic testing. When my sons were diagnosed (before I was) I had many, many comments to the effect that at least I knew now, so I wouldn't have more children. As if the world would be better off without autistic people in it. #AutINSAR
Q4: Researchers: How do you think your research (or another researcher’s work) will improve the lives of #ActuallyAutistic people who are already here—as opposed to autistic people in future generations?
A4 @soundcube giving the autistic POV alongside @MHAutism @Sarah_NottsUni er al ‘Suicidality in autism’ is important for those of us ‘still’ here - it gives hope that autistic people belong #AutisticNarrative counts 101% in research. #AutINSAR #INSAR2019
A4: I've been involved in research about how autistic people wish to be described, how they wish to be educated and the knowledge doctors have about autism #AutINSAR
— Lorcan Kenny (@LorcanKenny) May 2, 2019 A4: Also, my PhD focused on executive function (planning, multi-tasking and organising skills) that shows autistic people without learning difficulties may need some help with these skills but they are often not assessed in clinical/educational practice #AutINSAR
— Lorcan Kenny (@LorcanKenny) May 2, 2019 My research on terminology preferences of autistic people can be found here: https://t.co/ik5jOJ2Uu5 #AutINSAR https://t.co/4irp0SKR90
— Lorcan Kenny (@LorcanKenny) May 2, 2019A4: I'm proud of the work we did with GPs too (https://t.co/Vq7kqj2rIk). Carole Buckley did some amazing work building from this survey to ensure that GPs in the UK better support their autistic patients #AutINSAR
— Laura Crane (@LauraMayCrane) May 2, 2019 Executive functioning is my primary difficulty with both feeding myself and making progress in my own research, so yeah I care about this. #AutINSAR https://t.co/LcYWKrdfPy
— Alyssa (@yes_thattoo) May 2, 2019 A4: One of my favourite research studies was evaluating an autistic-led post-diagnostic/identification group run by @carolinehearst. Was amazing to document the benefits of autistic-led support #AutINSAR
— Laura Crane (@LauraMayCrane) May 2, 2019 A4: I hope that more autistic people who find out they are autistic (either self-identifying or newly diagnosed) benefit from autistic-led support. #AutINSAR
— Laura Crane (@LauraMayCrane) May 2, 2019 A4: Well some people are already using my paper to argue for AAC access for people who also have oral speech. So that’s a now thing. https://t.co/8aHiGq4NJF
#AutINSAR
— Alyssa (@yes_thattoo) May 2, 2019 #AutINSAR
A4 in my role with @AutisticaUK, all research funded is based on community priorities and addressing actual, practical challenges. Our projects driven by autistic people really demonstrate this (welfare, maternity, gastrointestinal issues, parenting) #AutINSAR https://t.co/zbrMVT03Ko
— Cat Hughes (@naturetable) May 2, 2019 #autINSAR A4. Many social barriers autistic people face are because autism is so poorly understood in society. With research on employment, there is an opportunity to change organisational culture to suit autistic employees, rather than changing the employee to fit the culture.
— CRAE (@CRAE_IOE) May 2, 2019 A4 small shout out for some fundamental science @PWCentre looking at how sensory sensitivities are underpinned at the cellular and network level. I think this is a good example of how lab science can develop knowledge relevant to people’s lives wxperience #AutINSAR
— Sue Fletcher-Watson (@SueReviews) May 2, 2019 A4: I feel really blessed to have had the opportunity to do participatory research on suicide and access to mental health care. Here’s a white paper I contributed to with @TheArcUS. #AutINSAR https://t.co/PsusjHBGAr
— Sara Luterman (@slooterman) May 2, 2019 A4: I'm happy for the efforts of @Sarah_NottsUni in reducing suicidality, and the efforts of @DrLaurenBF In improving quality of life across the lifespan #AutINSAR #INSAR2019
— Douglas Bass (@douglasbass) May 2, 2019 A4 My research on autism and the neurodiversity movement provides evidence that activists view autism as a *complex* difference that requires support, and similarly that even strengths have *complex* effects that depend on various influences. @thinkingautism #autinsar
— Steven Kapp (@drstevenkapp) May 2, 2019 A4: I’m hoping to improve the healthcare experiences of autistic adults and improve the knowledge, skills and confidence of health professionals working with autistic adults... all in collaboration with autistic adults themselves. #AutINSAR
— Anna Urbanowicz (@aurbanowicz) May 2, 2019 A4: My research includes creating student communities for autistic students in post-secondary education. Hopefully, the students I’m working with and learning from are also benefitting! #AutINSAR
— HelenRottier (@helenrottier) May 2, 2019 Today during my @IllinoisLEND presentation, a social work educator told me that they had previously taught/required person-first language, but my research changed their perspective! #AutINSAR
— HelenRottier (@helenrottier) May 2, 2019 #AutINSAR
A4
Research into methods of learning, eg AIMS in South Africa, an alternative to ABA, could be researched more internationally and implemented in schools where developing autistic children using their interests and abilities is preferable to attempts to "cure" them.
— Rowan (@Rowan55388496) May 3, 2019A4
Research into methods of learning, eg AIMS in South Africa, an alternative to ABA, could be researched more internationally and implemented in schools where developing autistic children using their interests and abilities is preferable to attempts to "cure" them.
Q5: Which co-occurring conditions need more research attention, and why?
A5 Sleep disorders have a major impact on our lives, and there is minimal research about it. There is also little research about effective treatments for depression and anxiety in autistic people, particularly for people who don’t have access to communication. #AutINSAR https://t.co/YXfAIEMvWO
— Autistic Self Advocacy Network (@autselfadvocacy) May 2, 2019 A5: -cPTSD and trauma in autistic people specifically, with a focus on developing effective treatments. Very common.
-Ehlers-Danlos Syndrome—common, complex, underdiagnosed and poorly treated.
-Sensory and auditory processing disorders.
-Sleep. #AutINSAR
— #AutChat mod (@autchatmod) May 2, 2019 -Ehlers-Danlos Syndrome—common, complex, underdiagnosed and poorly treated.
-Sensory and auditory processing disorders.
-Sleep. #AutINSAR
A5 hypermobility, eating disorders, sleep problems, seizure disorders...
eating disorders are especially important to me personally bc i haven't found treatment that understands how my experience/needs might differ from an allistic person w an ed #AutINSAR
— ⚡️ homo qui vixit (@endeverstar) May 2, 2019 eating disorders are especially important to me personally bc i haven't found treatment that understands how my experience/needs might differ from an allistic person w an ed #AutINSAR
A5. Spectrum published an explainer on co-occurring conditions and #autism: https://t.co/p3gdJQ1iss More than half of #autistic people have four or more other co-occurring conditions. #AutINSAR
— Spectrum (@Spectrum) May 2, 2019 A5. One of our most recent features addressed the overlap between #autism and #OCD: https://t.co/xiQeCQYT48 #AutINSAR
— Spectrum (@Spectrum) May 2, 2019 A5 With me, it’s #OCD. I was diagnosed with OCD in grade 6. This comes along side my autism. I think that more focus on mental health and access to it is needed. #AutINSAR #INSAR2019
— Aaron Bouma #Militaryspecialist #Carletoncounty (@CANADA566) May 2, 2019 Q5 co-occurring conditions that need more research: EDS; many autoimmune conditions individually and as an overall phenomenon; anxiety, depression, and suicidality. #autINSAR
— We Are Like Your Child (@wearelikeyrkid) May 2, 2019 A5: Number one has to be autism and learning/intellectual disability. This really important study from Ginny Russell and colleagues showed that, of research published in autism journals, 94% of participants did not have an LD/ID https://t.co/0KWPfKqekF #AutINSAR
— Lorcan Kenny (@LorcanKenny) May 2, 2019 A5: Also, research into non-autistic people's (especially professionals who work with autistic people) understanding the difference between autism and co-occurring conditions, e.g., lots of people think anxiety is an intrinsic part of autism #AutINSAR
— Lorcan Kenny (@LorcanKenny) May 2, 2019 A5: Agree with @LorcanKenny. At @CRAE_IOE, we run a research-schools partnership with autism special schools in London. Most researchers who approach these schools about research only want to include children without LD/ID... #AutINSAR
— Laura Crane (@LauraMayCrane) May 2, 2019 I had to push back against this thinking during my dissertation-some pushed for autism only, I pushed for including co-occurring conditions. I won and included kids with various co-occurring conditions such as LD and ADHD.
— Andy Colombo-Dougovito (@amcdphd) May 16, 2019 A5: Sleep issues, eating disorders, and Ehlers-Danlos in general.
Ehlers-Danlos and myotonic muscular dystrophy type 2 personally. #AutINSAR
— Alyssa (@yes_thattoo) May 2, 2019 Ehlers-Danlos and myotonic muscular dystrophy type 2 personally. #AutINSAR
A5 this is a bit of a spinoff, but i'd also like to see research that works towards increasing provider competence at differential diagnosis
SO MANY of us get misdiagnosed and it leads to ineffective or even harmful treatment #AutINSAR
— ⚡️ homo qui vixit (@endeverstar) May 2, 2019 SO MANY of us get misdiagnosed and it leads to ineffective or even harmful treatment #AutINSAR
A5 #AutINSAR #INSAR2019
Sleep deprivation - it reduces our ability to cope or strength of will to stay - it’s also very human thing not to cope without sleep - #Ptsd makes it worse
Links 2 mental health issues and suicidality as we get ‘2 tired’ to carry on #AutisticSimplyHuman
— Flow Observatorium (@ObservatoriumF) May 2, 2019 Sleep deprivation - it reduces our ability to cope or strength of will to stay - it’s also very human thing not to cope without sleep - #Ptsd makes it worse
Links 2 mental health issues and suicidality as we get ‘2 tired’ to carry on #AutisticSimplyHuman
A5: Mental health conditions. All of them. Ehlers-Danlos and hypermobility. GI disorders. #AutINSAR
— Dr Jac (@JacdenHouting) May 2, 2019 A5 a co-occurring condition that is NOT a disease or disorder but needs much more research: gender divergence. Not on causation of the high rate of intersection, but research that helps us live better lives, get past gatekeepers, be supported in our challenges, etc. #autINSAR
— We Are Like Your Child (@wearelikeyrkid) May 2, 2019 A5 Translational research. Sometimes there is research being done in an area, but it never reaches autistic people because it isn't being translated into practice, or it is but almost no one is doing it, or it's being translated in ways that don't respond to needs. #AutINSAR
— theories of minds (@theoriesofminds) May 2, 2019 A5: Also as well as focusing on co-occurring conditions separately, looking at how multiple conditions work together (or not).
It seems very rare for a person to be autistic and one single other diagnosis. #AutINSAR https://t.co/x5dZti1hwm
— Bethan Davies (@BethAnDavies28) May 2, 2019 It seems very rare for a person to be autistic and one single other diagnosis. #AutINSAR https://t.co/x5dZti1hwm
#autINSAR A5. Anxiety!! Anxiety is common in autistic people, yet there is a lack of accepted and reliable autism-specific measures of anxiety. Especially for autistic adults.
— CRAE (@CRAE_IOE) May 2, 2019 In case anyone is interested in #anxiety and #autism, we have a deep dive into the overlap here: https://t.co/EA8fRLKx55 #AutINSAR
— Spectrum (@Spectrum) May 2, 2019 A5 I want research on the co-occurrence of Tourette’s syndrome and Autism. So many clinicians assume Tourette’s symptoms are simply an intrinsic part of autism and not a separate condition. Eductional methods alone 4 autistics and people w/ Tourette’s are at odds w/ one another #AutINSAR
— Carol Greenburg (@Aspieadvocate) May 2, 2019 A5: Connective tissue disorders, sleep disorders, eating disorders, substance misuse disorders. Epilepsy. anxiety and mood disorders yes, but with a big focus on trauma and PTSD, and how to recognize them, especially in ppl w/limited language. (1/3) #autinsar
— Julia Bascom (@JustStimming) May 2, 2019 A5: Apraxia and movement disorders, including catatonia. Specifically--to what extent CAN these actually be distinguished from autism? If most autistic people have some degree of apraxia, as research is suggesting, does it make sense to call that co-occuring? (2/3) #autinsar
— Julia Bascom (@JustStimming) May 2, 2019 A5: Finally, intellectual disability. Not even just as a co-occuring condition: it's just blazingly obvious that most researchers have never met a single person with an ID. It's causing some pretty embarrassing, highly preventable problems. (3/3) #autinsar
— Julia Bascom (@JustStimming) May 2, 2019 Seriously if you’re doing research and haven’t met anyone with the conditions you’re researching there’s a problem. #AutINSAR
— Alyssa (@yes_thattoo) May 2, 2019 A5. Depression. There’s some good research coming out about this lately, but it still feels very underexplored. #AutINSAR #INSAR2019 https://t.co/VnOxoouDyc
— codeman38 (@codeman38) May 2, 2019 A5 high trauma rates. Are Autistic people more likely to be traumatized? How can we lower trauma through the lifespan? Can we design and implement trauma-informed Autistic access? Are there additional qualities to Autistic trauma that we should understand? #autINSAR
— We Are Like Your Child (@wearelikeyrkid) May 2, 2019 Researcher Katherine Stavropoulos is digging into #PTSD and #autism in children on the spectrum. More on her research here: https://t.co/8EEsk8LDBH #AutINSAR
— Spectrum (@Spectrum) May 2, 2019 A5: I think we need to address health inequalities for autistic people by understanding physical health and experiences of accessing physical health services. #AutINSAR #INSAR2019 https://t.co/rhoegXdWkv
— Sue Fletcher-Watson (@SueReviews) May 2, 2019 A5: it’s not exactly a co-occurring condition but we definitely need to know more about older autistic people including:
-Cognitive decline
-Physical health
-Dementia risk and resilience
-Preferred later life and end-of-life care#AutINSAR (tweeting again with hashtag)
— Sue Fletcher-Watson (@SueReviews) May 2, 2019 -Cognitive decline
-Physical health
-Dementia risk and resilience
-Preferred later life and end-of-life care#AutINSAR (tweeting again with hashtag)
A5: Epilepsy, Ehlers-Danlos, depression. Depression is the greatest hindrance to #ActuallyAutistic well-being, in my opinion. #AutINSAR #INSAR2019
— Douglas Bass (@douglasbass) May 2, 2019 A5 so many: suicidality, EDS, sleep disorders. I'd also love to see work on how autistic people measure and understand their own health. It's hard to benchmark what you experience if descriptions are based on non-autistic understanding and perception of pain/discomfort #AutINSAR
— Cat Hughes (@naturetable) May 2, 2019 Not that I really know what *is* getting research attention right now, but +1 re: pain perception. I've spent so much time questioning whether certain things I experience even are pain or not, to say nothing about trying to rate them on a 1-10 scale.
— Minty (@minty_things) May 2, 2019 A5: the overlap between autism and epilepsy, especially in autistic people with learning disabilities urgently needs more research attention #AutINSAR
— Lorcan Kenny (@LorcanKenny) May 2, 2019 A5: ID is number 1 IMO, because the entire concept of so-called “functioning” labels begins there. Certainly more attention should be paid to sleep issues, EDS, and epilepsy. And can we get an accurate read on the causes of premature death? #AutINSAR #INSAR2019 https://t.co/XVCB92aquS
— Steve Lieberman (@stevemlieberman) May 2, 2019 EDS [Ehlers-Danlos] POTS [Postural Orthostatic Tachycardia Syndrome] dyspraxia apraxia ADD/ADHD and misophonia #AutINSAR https://t.co/xxu9xJhTOK
— Solveig ⚧ - Autistic Acceptance Worldwide (@autisticb4mmr) May 2, 2019 I’d like to see more research on epilepsy, including management and also access issues and public awareness #autINSAR
— Campaign Against Phony Autism Cures (@AgainstCures) May 2, 2019 Alexithymia, and how that interacts with social deficits
— ya boi frankles (@wheeflop) May 19, 2019 The overlap of Autism and Disorders such as Anxiety/Depression/ADHD. Anxiety and Depression in both Chemical Imbalance and borne from trauma related to being autistic in an intolerant/insufficiently-equipped environment (at home, school, work, etc)#AutINSAR #INSAR2019
— Sneaky Bunyip (Cannon Fodder Comics) (@sneakybunyip) May 2, 2019 A5:
-Mental Health
-PTSD/C-PTSD
-Insomnia
I think it’s pretty easy to make the case for co-occurring conditions people can see but advocates can struggle to make clear co-occurring mental health/invisible ones.#AutINSAR
— GhillieGuide (@Ghillie_Guide) May 2, 2019 -Mental Health
-PTSD/C-PTSD
-Insomnia
I think it’s pretty easy to make the case for co-occurring conditions people can see but advocates can struggle to make clear co-occurring mental health/invisible ones.#AutINSAR
Sleep, delayed pain receptors, lack of temperature regulation, epilepsy, sensory issues
— Edge of The Playground (@PlaygroundEdge) May 3, 2019 A5
Depression, suicidal ideation and suicide attempts, anxiety, because of the negative impact these have on quality of life. #AutINSAR
— Rowan (@Rowan55388496) May 3, 2019Depression, suicidal ideation and suicide attempts, anxiety, because of the negative impact these have on quality of life. #AutINSAR
Q6: What are some concerns of minority autistic community members that don’t get enough research attention?
A6: intersectionality in general is almost entirely disregard in autism research and often practice.
Eg the vulnerability of black autistic people in relation to police violence
#AutINSAR
— Sue Fletcher-Watson (@SueReviews) May 2, 2019 Eg the vulnerability of black autistic people in relation to police violence
#AutINSAR
A6 Autistic people of color often face discrimination when it comes to obtaining a dx, supports, or accommodations, especially as adults. Disparities in special education, the school-to-prison pipeline, and police violence are all relevant issues that merit research. #AutINSAR https://t.co/pegqCsMy5Z
— Autistic Self Advocacy Network (@autselfadvocacy) May 2, 2019 A6 disparities in access to diagnosis and accommodations, systemic inequalities that impact quality of life, increased risk of harm when not hardcore masking #AutINSAR
— ⚡️ homo qui vixit (@endeverstar) May 2, 2019 A6 actual data on non-binary #ActuallyAutistic communities in many fields of research!
— Louise Âû (@au_louise) May 2, 2019 Can we please yes? Saw a paper on gender and sexual diversity that still classified everyone as either a man or a woman while some responses indicated they were non-binary... #AutINSAR https://t.co/5zejnfvTBD
— Alyssa (@yes_thattoo) May 2, 2019 A6: I did a survey of over 1000 parents' experiences of their children getting an autism diagnosis - 95% of the respondents were White (https://t.co/CGBQT3Qz1s). We need to do more to include the views/perspectives of minority ethnic groups in research #AutINSAR
— Laura Crane (@LauraMayCrane) May 2, 2019 A6: We subsequently did some work (led by a brilliant Somali student, Amal Hussein) with Somali parents of autistic children, highlighting some specific issues to the Somali community: https://t.co/rKkph6crYJ #AutINSAR
— Laura Crane (@LauraMayCrane) May 2, 2019 A6 Seniors! Where is the data on #ActuallyAutistic that are aging? #AutINSAR
— Louise Âû (@au_louise) May 2, 2019 I believe many #ActuallyAutistic minorities are frustrated (in Canada) such as First Nations for example with being under federal jurisdiction and not being able to get resources for autism which are mainly in a provincial setting. That means they don’t have access. #AutINSAR
— Aaron Bouma #Militaryspecialist #Carletoncounty (@CANADA566) May 2, 2019 Q6 Police violence against disabled people, particularly against disabled people of color. Undue gatekeeping against Autistic transgender people seeking medical transition. Zero research on anything ever that recognizes non-binary transgender people. #autINSAR
— We Are Like Your Child (@wearelikeyrkid) May 2, 2019 A6. Minority families often miss out on access to therapies or get left out of #autism research — an ethical failure. Back in 2016, we featured some of the initiatives underway trying to address the issue. https://t.co/LkyAlydlLI #AutINSAR
— Spectrum (@Spectrum) May 2, 2019 A6: shout out to @AutisticaUK who have a call at the moment for research with underrepresented groups #AutINSAR
— Sue Fletcher-Watson (@SueReviews) May 2, 2019 A6: More info on this call for proposals for UK-based researchers can be found here: https://t.co/VWaqD49AqK #AutINSAR https://t.co/BG2MPpgS5E
— Lorcan Kenny (@LorcanKenny) May 2, 2019 A6: Police violence, and the actual efficacy (or lack thereof) of police training programs. How to scale good supports to families with different resources or cultural contexts. How to identify autistic folks trapped in the criminal justice system. (1/4) #autinsar
— Julia Bascom (@JustStimming) May 2, 2019 A6 There's research about how parents of color flag different things about their kids development than white parents--and are often less scared. This is framed as a deficit and it really shouldn't be! What can we learn from these families? (2/4) #autinsar
— Julia Bascom (@JustStimming) May 2, 2019 A4 Anything about adult diagnosis disproportionately benefits marginalized communities, since we are diagnosed later and less often. Same with issues like homelessness, and other ways we fall through the cracks. How can you find us, and how can you help? (3/4) #autinsar
— Julia Bascom (@JustStimming) May 2, 2019 A4: Finally: why are we so gay? (4/4) #autinsar
— Julia Bascom (@JustStimming) May 2, 2019 :D SUCH A THING
(although, i am personally curious about the why but am also afraid if researchers latch onto this it will turn into "and how can we stop it") #AutINSAR https://t.co/STxNyrrw2B
— ⚡️ homo qui vixit (@endeverstar) May 2, 2019 (although, i am personally curious about the why but am also afraid if researchers latch onto this it will turn into "and how can we stop it") #AutINSAR https://t.co/STxNyrrw2B
Considering that in a study I read noting more autistic people in a bunch of trans kids, at least one autistic trans kid had designated-gender-appropriate behavior as a therapy goal, that’s already a thing. #AutINSAR
— Alyssa (@yes_thattoo) May 2, 2019 Relatedly: There seems to be a *lot* of overlap among autism, asexuality, and nonbinary gender, and I am genuinely interested in seeing more research on why that is. #AutINSAR https://t.co/llkYDz81Z8
— codeman38 (@codeman38) May 2, 2019 A6: I don’t know the answer to this but there seems to be fewer opportunities for minority autistic community members to safely speak up and say what their concerns are and be listened to #AutINSAR
Looking forward to our Equality, Diversity and Inclusion project @AutisticaUK https://t.co/kvvPYOaldW
— Bethan Davies (@BethAnDavies28) May 2, 2019 Looking forward to our Equality, Diversity and Inclusion project @AutisticaUK https://t.co/kvvPYOaldW
A6: Yes! And the problem is, we design all of our autism services around the views of the majority, and then wonder why minority groups don't engage with them...sigh! #AutINSAR
— Laura Crane (@LauraMayCrane) May 2, 2019 A6: ways to successfully include minority autistic community members in autism research, the first and easiest step is to consistently report the breakdown of the socioeconomic status, gender, race and ethnicity of participants #AutINSAR
— Lorcan Kenny (@LorcanKenny) May 2, 2019 A6: Are there even any autistic minority community members here on the chat? If not, that's a lowdown dirty shame. #AutINSAR #INSAR2019
— Douglas Bass (@douglasbass) May 2, 2019 A6 I see many Autistic People of Color say that the advice generally given to Autistic people would get them or their children killed. There needs to be more understanding of the intersections that lead to such social injustice and ways to address it. #autINSAR
— We Are Like Your Child (@wearelikeyrkid) May 2, 2019 A6: Participatory research needs to make sure multiply marginalized autistic people are part of the work. I see a good bit where it’s autistic white boys on computers, and that’s pretty narrow. #AutINSAR
— Alyssa (@yes_thattoo) May 2, 2019 A6: we absolutely need research on autism and gender identity and sexual orientation.
Developed a lovely proposal with @SedgewickF to look at co-creating relationship and sex ed materials for autistic children and young people. Not funded. 😕
#AutINSAR
— Sue Fletcher-Watson (@SueReviews) May 2, 2019 Developed a lovely proposal with @SedgewickF to look at co-creating relationship and sex ed materials for autistic children and young people. Not funded. 😕
#AutINSAR
A6 How to help Autistic adults who have been institutionalized or otherwise isolated from the larger community become aware of their rights and aware of the ways to solicit support and assistance in taking charge of their lives. #autINSAR
— We Are Like Your Child (@wearelikeyrkid) May 2, 2019 #autINSAR A6. @CRAE_IOE's @LauraMayCrane did a survey with over 1000 participants. A weakness of the sample was a lack of ethnic diversity, with 95% of participants describing themselves as white. https://t.co/XPEp5iQdhW
— CRAE (@CRAE_IOE) May 2, 2019 A6: Yes, I did - thanks for the HT @CRAE_IOE! And the problem is that we use our knowledge from unrepresentative samples to design services and supports for autistic people...then we wonder why minority groups don't engage with services and supports 🙄 #AutINSAR https://t.co/QB6Jcqer4v
— Laura Crane (@LauraMayCrane) May 2, 2019 A6: Lots of stigma amongst minority ethnic groups. There is great work by @NuraAabe that is addressing this: https://t.co/ZHFNqPQgg5 #AutINSAR
— Laura Crane (@LauraMayCrane) May 2, 2019 A6: LGBTQIA+, trans, and non-binary identities. The impact of intersectionality on access to appropriate services and supports for those who are multiply marginalised. #AutINSAR
— Dr Jac (@JacdenHouting) May 2, 2019 A6: In general, more research focused on autistic people of color and autistic women, girls, and non-binary folks! #AutINSAR
— HelenRottier (@helenrottier) May 2, 2019 One of my future dream projects is to examine how gendered social expectations of young children relates to autism symptom presentation. #AutINSAR
— HelenRottier (@helenrottier) May 2, 2019 A6:
Access to diagnostic resources
Barriers to participation in political venues for #autistic adults
Development of sexuality in #autistic brains#AutINSAR
— GhillieGuide (@Ghillie_Guide) May 3, 2019 Access to diagnostic resources
Barriers to participation in political venues for #autistic adults
Development of sexuality in #autistic brains#AutINSAR
#AutINSAR
A6
Not being diagnosed until adulthood, being misdiagnosed with other conditions... and again... and again. Being considered rude or hard or cold because you don't want to be touched, or don't always want to talk. Loss of trust in medical professionals.
— Rowan (@Rowan55388496) May 3, 2019A6
Not being diagnosed until adulthood, being misdiagnosed with other conditions... and again... and again. Being considered rude or hard or cold because you don't want to be touched, or don't always want to talk. Loss of trust in medical professionals.
Q7: What are some barriers that make autism research results less accessible to #ActuallyAutistic people (cognitive, financial, etc), and how can we reduce them?
A7: Perhaps TPGA can have occasional chats between #ActuallyAutistic autism researchers and the #ActuallyAutistic community #AutINSAR #INSAR2019
— Douglas Bass (@douglasbass) May 2, 2019 A7 Accessible language! Use layman terms whenever possible for your diverse audience. #AutINSAR
— Louise Âû (@au_louise) May 2, 2019 Autism in Adulthood does lay summaries! Several people have told me they were glad to see it because it made it easier to understand the main points. #AutINSAR https://t.co/02SWBCg6SR
— Alyssa (@yes_thattoo) May 2, 2019 A7: researcher workload is a big issue. I know it seems whingey - tenured academics are an incredibly privileged bunch. But the skills that get them to that place - doing good research, sharing it with people - quickly get lost in the sheer quantity of tasks expected.#AutINSAR
— Sue Fletcher-Watson (@SueReviews) May 2, 2019 A7We need more accommodations for #ActuallyAutistic people financially to go to participate in research projects, for transportation, and other quiet time, and allocative resources. If they want our accurate voices they need to make space and understand our struggles. #AutINSAR
— Aaron Bouma #Militaryspecialist #Carletoncounty (@CANADA566) May 2, 2019 A7 allistic researchers seem to still be pretty insular such that i'm not sure it occurs to many people that the language they're using or the paywalls they're publishing behind are going to inhibit #ActuallyAutistic people from accessing their research #AutINSAR
— ⚡️ homo qui vixit (@endeverstar) May 2, 2019 A7 #AutINSAR #INSAR2019
Paywall
Paywall
Paywall
Paywall
Autistic people can be often badly hurt by poor engagement
Financial and ideological self interests of some funders
Hidden agendas
— Flow Observatorium (@ObservatoriumF) May 2, 2019 Paywall
Paywall
Paywall
Paywall
Autistic people can be often badly hurt by poor engagement
Financial and ideological self interests of some funders
Hidden agendas
A7 oftentimes academics are welcome to share their published studies person to person, but #ActuallyAutistic people might never have been informed they can ask for that! #AutINSAR
— ⚡️ homo qui vixit (@endeverstar) May 2, 2019 There’s a reason I remind people they can ask me for my papers! On that note, you can ask me for my papers.
And most of my paywalled writing is on https://t.co/1F3s5xhPlb as well. #AutINSAR #ActuallyAutistic https://t.co/g1cNhKHAUW
— Alyssa (@yes_thattoo) May 2, 2019 And most of my paywalled writing is on https://t.co/1F3s5xhPlb as well. #AutINSAR #ActuallyAutistic https://t.co/g1cNhKHAUW
Autism in Adulthood does lay summaries! Several people have told me they were glad to see it because it made it easier to understand the main points. #AutINSAR https://t.co/02SWBCg6SR
— Alyssa (@yes_thattoo) May 2, 2019 A7. Researcher @bhismadev wrote for us about the need to encourage public engagement from researchers at their research institutions. https://t.co/nGLtcNqTDl #AutINSAR
— Spectrum (@Spectrum) May 2, 2019 A7 Making research, results, and the process of consulting on research cognitively accessible is crucial to making sure autistic people with all kinds of support needs, including those with ID, are weighing in on research priorities. #AutINSARhttps://t.co/xWlzaeEzgX
— Autistic Self Advocacy Network (@autselfadvocacy) May 2, 2019 A7 In the DD policy world, ASAN has seen a surge of interest in Easy Read and plain language materials from orgs starting to realize that the people they serve should be able to understand their resources. Would love to see similar access measures in autism research #AutINSAR
— Autistic Self Advocacy Network (@autselfadvocacy) May 2, 2019 A7 And of course, #INSAR2019's backlash, among autism researchers, against the idea that autism research spaces should even *attempt* to be inclusive of and accessible to autistic people shows how far we have to go here. #AutINSAR
— Autistic Self Advocacy Network (@autselfadvocacy) May 2, 2019 A7 the sensory room is not sensory friendly @AutismINSAR. The natural sunlight, noise of the fan, the cooks and workers clanging, and the lack of instructions on the use of the room. #AutINSAR
— Louise Âû (@au_louise) May 2, 2019 A7: the results of research is often only described in scientific papers which might be behind a paywall and written in scientific language. To change this we must get universities to incentivise researchers to do public engagement (i.e., make it a promotion criteria) #AutINSAR
— Lorcan Kenny (@LorcanKenny) May 2, 2019 You never have to pay. Ask you library to get the article for you.
— (((Lisellecae))) (@Lisellecae) May 2, 2019 That’s great if you know about it, but without being told that most people don’t. I worked at a university until recently and yet still just quit out of pages with paywalls because I didn’t know how to do that
— ya boi frankles (@wheeflop) May 3, 2019 A7: the language and format that the research is presented in.
Summarise in lay-terms so that the people the research is about can easily see if it is relevant and the top level results before committing to a 30 page opaque report #AutINSAR https://t.co/3MFl4Xp7ML
— Bethan Davies (@BethAnDavies28) May 2, 2019 Summarise in lay-terms so that the people the research is about can easily see if it is relevant and the top level results before committing to a 30 page opaque report #AutINSAR https://t.co/3MFl4Xp7ML
A7 some barriers: service providers who don’t keep up with the research, research hidden behind paywalls, media sensationalism of mis-understood research, research not getting written about clearly for those who can’t understand statistics and specialized language #autINSAR
— We Are Like Your Child (@wearelikeyrkid) May 2, 2019 A7.
-Paywalls. So much paywalls. Open access or at least willingness to share papers would help immensely.
-Papers filled with jargon, with no lay-friendly abstract/summary available. (In some cases, not even accessible to academics from other disciplines!)#AutINSAR #INSAR2019 https://t.co/ln7nFwE6JH
— codeman38 (@codeman38) May 2, 2019 -Paywalls. So much paywalls. Open access or at least willingness to share papers would help immensely.
-Papers filled with jargon, with no lay-friendly abstract/summary available. (In some cases, not even accessible to academics from other disciplines!)#AutINSAR #INSAR2019 https://t.co/ln7nFwE6JH
A7. I have a graduate degree in computer science, and some of the bio/psych posters that I’ve seen from past INSARs were completely incomprehensible to me due to unexplained field-specific jargon. #AutINSAR #INSAR2019
— codeman38 (@codeman38) May 2, 2019 A7: Researchers who don't want us in the room when they're talking about us. Researchers promoting myths and stereotypes about self-advocacy. Researchers throwing a fit over accessibility. Researchers talking about us like zoo animals. I can go on... #autinsar
— Julia Bascom (@JustStimming) May 2, 2019 #autINSAR A7. Language and visuals! We think its important to ensure that evidence-based knowledge is translated, so that it can have meaningful impact and make a real difference to people’s everyday lives.
— CRAE (@CRAE_IOE) May 2, 2019 A7: Researchers often assume that we know how autistic people want to learn about research - we need to do more to find out how best to share research findings then focus on prioritizing that (do one thing well rather than lots of things badly!) #AutINSAR
— Laura Crane (@LauraMayCrane) May 2, 2019 A7: Research (and calls for research, which affects publishing) are really jargony. Even if you’re just in a different subfield it can be hard to follow!#AutINSAR
— Alyssa (@yes_thattoo) May 2, 2019 A7 Translation of research findings in an accessibly way. The expense of access. Triggers in research that may not be acknowledged #AutINSAR
— Cat Hughes (@naturetable) May 2, 2019 #AutINSAR er....conference costs?
— Dr Brett Heasman (@Brett_Heasman) May 2, 2019 A7 some ways to reduce those barriers: hire more cognitive interpreters to explain research clearly and accurately for the general public, the media, etc. Support open access academic publishing (our taxes support science, we have a right to be able to read it.) #autINSAR
— We Are Like Your Child (@wearelikeyrkid) May 2, 2019 A7: I think researchers often use terribly offensive language when talking about autism (abnormal, deficit, impaired) - this makes research inaccessible (I cringe at my old research articles where I used words like this...I'm trying to be a better ally now!) #AutINSAR
— Laura Crane (@LauraMayCrane) May 2, 2019 As an early career researcher (some 10-15 years ago), I copied phrases I read in other research articles (which I now feel shamefully embarrassed about). Change needs to come from the top. Plus, it's 2019 people!!! #AutINSAR
— Laura Crane (@LauraMayCrane) May 2, 2019 Researchers ignore everything I say that doesn’t fit their preexisting narrative about us. Speaking from experience. #AUTINSAR https://t.co/5nb6ZFPNSn
— Solveig ⚧ - Autistic Acceptance Worldwide (@autisticb4mmr) May 2, 2019 A7: Accessible language - so many “lay” summaries are NOT lay. Paywalls, obvs. But also topics researched, and the way research is presented. Research so confronting that it triggers meltdown is NOT accessible. #AutINSAR
— Dr Jac (@JacdenHouting) May 2, 2019 A7: Talking about autistic people in dehumanizing terms, and not just about our disability. Reading about trans autistics, racialized autistics, autistic women in scientific literature can expose you to transphobic, racist, and sexist language real fast. #AutINSAR #INSAR2019
— Vivian Ly (@viv_ly_mw) May 2, 2019 A7: #AcademicAbleism is a huge barrier to critical, autistic-led autism researcher. Making higher education and academia more accessible is at the center of my work. #AutINSAR
— HelenRottier (@helenrottier) May 2, 2019 I think my biggest barrier to conferences is I have a huge amount of trouble recognizing people and if I do recognize people, I tend to get stuck at the joining/starting a conversation stage. #AutINSAR
So I guess if you see me, say hi!
— Kayden Stockwell (@KaydenStockwell) May 2, 2019 So I guess if you see me, say hi!
A7: Besides paywalls I think the biggest barrier is the lack of promotion and advertising of self-advocacy communities by mainstream existing support infratructure, autistic people have to do their own research to know organizations like @autselfadvocacy exist.#AutINSAR
— GhillieGuide (@Ghillie_Guide) May 3, 2019 •Academic-only release of information (financial (f), cognitive (c))
•General population releases written for a parents-and-educators audience (c)
•Lack of peer review from qualified readers who are #ActuallyAutistic (c)
•Paywalls (f) and low information literacy (c) on...
— Rebecca (@beccajacket) May 3, 2019 •General population releases written for a parents-and-educators audience (c)
•Lack of peer review from qualified readers who are #ActuallyAutistic (c)
•Paywalls (f) and low information literacy (c) on...
...how to request paywalled articles through one’s library (c).
•Inconsistent accessibly (practical (p)) and user experience (c) of library websites—some are really good, but others are at best confusing and at worst inaccessible. The info, not the staff once you reach someone.
— Rebecca (@beccajacket) May 3, 2019 •Inconsistent accessibly (practical (p)) and user experience (c) of library websites—some are really good, but others are at best confusing and at worst inaccessible. The info, not the staff once you reach someone.
But if you read my blurb, you’ll see I’m biased.
Oh! Last one: controlled vocabulary searches (e.g. Library of Congress subject headings) (c). They’re really good for collecting materials about similar subjects on the same results page, but preferred subject headings ...
— Rebecca (@beccajacket) May 3, 2019 Oh! Last one: controlled vocabulary searches (e.g. Library of Congress subject headings) (c). They’re really good for collecting materials about similar subjects on the same results page, but preferred subject headings ...
Change slowly when they do change (fault the system not the catalogers). A lot of the terms are offensive to the population described (see: “illegal immigrants” as a subject heading), or were outdated for decades before change (May link examples if you like).
— Rebecca (@beccajacket) May 3, 2019 The language of subject headings is historically not written by stakeholders in the subject communities, and the process of changing subject headings involves replacement rather than networking (unless you’re AO3).
— Rebecca (@beccajacket) May 3, 2019 #AutINSAR
A7 Financial aspects. If not a professional, you most likely do not have access to journals and research paper unless they are freely accessible.
Patronising professionals who believe in leaving treatment decisions for yourself or your children to those who know best.
— Rowan (@Rowan55388496) May 3, 2019A7 Financial aspects. If not a professional, you most likely do not have access to journals and research paper unless they are freely accessible.
Patronising professionals who believe in leaving treatment decisions for yourself or your children to those who know best.
Q8: Any topics we’ve missed that you’d like to discuss?
A8: Exploring the phenomena of gender variance in the #ActuallyAutistic population without trying to fix it. #AutINSAR #INSAR2019
— Douglas Bass (@douglasbass) May 2, 2019 I think I say this ever year but I worry we in this chat are in an echo chamber and not reaching the people who REALLY NEED TO HEAR THIS STUFF #AutINSAR
— Sue Fletcher-Watson (@SueReviews) May 2, 2019 A8: I've mentioned it already but I am like a broken record so happy to repeat the need to focus on systemic change to how autism research is done to make sure it is reproducible #AutINSAR
— Lorcan Kenny (@LorcanKenny) May 2, 2019 A8: a major barrier to good participatory working is that university Human Resources protocols are just not helpful when it comes to including paid autism community representatives in research. #AutINSAR
— Sue Fletcher-Watson (@SueReviews) May 2, 2019 A8 ah what else? Apparently if we are 5% of 2500 attendees, I wish I'd know how to meet all of these wonderful #ActuallyAutistic people. #AutINSAR
— Louise Âû (@au_louise) May 2, 2019 A8 #AutINSAR #INSAR2019
Some researchers need to see us as human and holistically plus see where all these research issues fit in the bigger picture of our narrative
If it’s about autistic people living fulfilled lives
then It’s about us being #AutisticSimplyHuman
— Flow Observatorium (@ObservatoriumF) May 2, 2019 Some researchers need to see us as human and holistically plus see where all these research issues fit in the bigger picture of our narrative
If it’s about autistic people living fulfilled lives
then It’s about us being #AutisticSimplyHuman
A8: making autism research globally relevant is a major issue. 80% of autism research is done in 20% of countries. #AutINSAR
— Sue Fletcher-Watson (@SueReviews) May 2, 2019 Has anyone mentioned autism and pregnancy yet? #AutINSAR
— Solveig ⚧ - Autistic Acceptance Worldwide (@autisticb4mmr) May 2, 2019 No but a thing I’ve been wondering about is WHY is autism correlated with breech birth. (Are autistic pregnant people more likely to have their kids present breech?)#AutINSAR https://t.co/1gxEZeF4Lj
— Alyssa (@yes_thattoo) May 2, 2019 Here's the needed agenda:
#1-Work to make life better for actually autistic people.
#2-If you have a problem with #1, get the fuck out!
Simple.— Randy Germain (@ElBrutoBastardo) May 1, 2019
#AutINSAR Not mincing words here.
Far too many researchers have a problem with #1.
They need to find a different line of work. https://t.co/qTrI66gFYz
— Randy Germain (@ElBrutoBastardo) May 2, 2019 Far too many researchers have a problem with #1.
They need to find a different line of work. https://t.co/qTrI66gFYz
#autINSAR A8. Making conferences more accessible to the autism community and young and old researchers (autistic and non-autistic).
— CRAE (@CRAE_IOE) May 2, 2019 A8 Let’s talk about our interests. If anybody wants. Mine is Military, Military history. Model building. #Military #Fitness #ActuallyAutistic #INSAR2019 #AutINSAR pic.twitter.com/33JOUrihmU
— Aaron Bouma #Militaryspecialist #Carletoncounty (@CANADA566) May 2, 2019 We have a decent amount of evidence that being religious reduces anxiety and depression, and we also have research autistics are less religious. Can we make religion more accessible to have those effects on us?
— Autistic Priest⛪ (FrMatthewLC) (@AutisticPriest) May 3, 2019 I think we should offer people purposeful involvement in their communities (which is what generates this positive impact in religious groups), without them having to believe in gods if they don't want to. (Also, I wouldn't be comfortable in organisations like the Catholic church)
— Unicorn Ball (@Semilocon) May 3, 2019 I think community helps, but there is a positive impact on mental health even compared to people involved in non-religious community groups. There are deeper factors like the realization of ultimate meaning found in God. Religion, if done well, provides both community and meaning.
— Autistic Priest⛪ (FrMatthewLC) (@AutisticPriest) May 3, 2019 #AutINSAR
A8 Correcting common misconceptions about autistic people - a million carbon copied robots who are somehow both emotionless and suicidal, do not understand any social norms whatsoever and have no empathy. Also, that all parents of autistic children will get divorced.
— Rowan (@Rowan55388496) May 3, 2019 A8 Correcting common misconceptions about autistic people - a million carbon copied robots who are somehow both emotionless and suicidal, do not understand any social norms whatsoever and have no empathy. Also, that all parents of autistic children will get divorced.
Talking about being mindful of Stigma, this is a continuous problem even in research. #ActuallyAutistic @AutismINSAR #AutINSAR #AutismINSAR #AnAutisticAtINSAR
— Aaron Bouma #Militaryspecialist #Carletoncounty (@CANADA566) May 3, 2019 Addenda
Cats have been mentioned! :) #AutINSAR pic.twitter.com/dTXgmlulW2
— Flow Observatorium (@ObservatoriumF) May 2, 2019  |
| [image: Tabby cat with an embroidered felt Cheshire Cat head stuck in front of the tabby's face.] |
— Neurodiversité Art (@LucilaGuerrero_) May 2, 2019
[I read everything you shared here, thank you. 😍 A non-English #ActuallyAutistic from Montreal]
@AutismINSAR #AUTINSAR #INSAR2019 #ActuallyAutistic researcher attendee with a suggestion to make this a scent-free event...PLEASE (i.e., cologne, perfume, eating strong smelling food in meeting spaces). And if you’re following this # and in attendance please take note
— jÂcqûelyn (@fedej44) May 3, 2019 An important, community-cleaving debate at #INSAR2019 and #AutINSAR: why do so many #ActuallyAutistic people prefer cats over dogs?
I jest. Actual convo:
“Yay cats!”
“Yay dogs”
“Animals are unpredictable!”
“…and all these opinions are fine!”
pic.twitter.com/63WLihBmsa
— Thinking Person's Guide To Autism (@thinkingautism) May 11, 2019 I jest. Actual convo:
“Yay cats!”
“Yay dogs”
“Animals are unpredictable!”
“…and all these opinions are fine!”
 |
| [image: black-and-white cat in a carboard box.] |
Notes
We removed the original Twitter formatting as this many embedded tweets takes forever to load, plus are challenging for many of our community members to parse. If you want to see any tweet in its original context, please click on the date link (e.g., "May 2 2019") at the end of its entry.
Also, please know that some participants have private Twitter accounts. For this reason their comments, though valuable, will not be included here.
AutINSAR is a partnership between our team at Thinking Person's Guide to Autism, and The Autistic Self Advocacy Network (ASAN), NOS Magazine, Autism Women and Nonbinary Network (AWN Network), AutChat, and We Are Like Your Child. This year we welcomed new partners Flow Observatorium and Autistics 4 Autistics Ontario.
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