Even though IMFAR is all about autism, researchers don’t always connect with #autistic concerns. Hence the #AutIMFAR Twitter Chat at IMFAR 2017, which was a conversation among autistic community members and autism research community members (with plenty of participants who were both).
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| The onsite #AutIMFAR chat crew! Fab convo w/autistic and autism research folk.
[image: hotel conference room gathering of autistic & non-autistic researchers |
#AutIMFAR chat was a partnership with #autchat, The Autistic Self Advocacy Network, Autism Women’s Network, NOS Magazine, and Thinking Person’s Guide to Autism. We provided pre-chat guidelines and details.
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| [image above: The Twitter logos for five organizations:
autchat: a rainbow background with a black infinity symbol and black text reading: “#autchat“; The Autistic Self Advocacy Network: a spiraling rainbow heptagon on a white background; Autism Women’s Network: a pink lowercase “a” overlaid on a light-blue-and-brown illustrations of dragonflies and flowers, above the lowercase black text “autism women’s network”; NOS Magazine: a black circle on a white background, with an illustration of an incandescent light bulb drawn in white and surround by a sunburst in dashed rainbow colors; and Thinking Person’s Guide to Autism: All-caps black text on a white background reading “Thinking Person’s Guide to Autism,” with “Person’s” in white text on a black arrow.] |
During the chat, we asked 10 questions, and the participants responded (at length!). We’ve highlighted the questions themselves, and organized the responses below each question heading to make the discussion easier to follow.
Before the chat began, we asked people what they wanted to discuss at #AutIMFAR. Folks had a lot to say.
@thinkingautism: What conversations do you want to see happen between the #autistic community and #autism researchers? #AutIMFAR
Respondents on Twitter had a lot to say. Highlights:
- Topics #actuallyautistic ppl find important often misread by NT researchers. Need to address approach 2 research first.
- Explore possible relationship between long term effects of sensory overwhelm and PTSD
- I need some support to figure out how to deal with aging parents. I am an executive function mess w/it, skilled only in avoidance 🙁
- Especially if your parents are autistic, too — not 2x or 3x the issues, rather issues-squared or-cubed. Exciting! 😉
- My understanding of whatr esearch there is indicates that people tend to adapt/adapt their surroundings to being autistic with age BUT
- Can we have social research on improving lives of#autisticpeople, not the usual clinical blather on causation & ways 2 change us 2 fit in?
- Autistic people should be deciding what the research priorities are. I believe we mostly wouldn’t choose looking for genes and causes.
- I think research on mental health support is a also a big unaddressed need. Lack of support services with specialization in autism.
- I agree about including perspectives of#ActuallyAutisticresearchers. Important to determine what will have most long term benefit.
- What contexts and experiences make the difference between coping and not coping for people with ASD in workplace?
- Many researchers are autistic! Need more support for autistic ppl to be researchers.
- Participants’ time & contribution must be compensated.
- Poverty
- I’d like to see more research into our strengths, not just our deficits. Like advanced musical skill?
- More research on how autism affects appropriate medication doses, prescriptions please!!
- Including effects of complex interpersonal trauma. Extremely important, common, understudied.
- Looking for resources on autistic inertia, burnout, regression particularly with reference to late diagnosis.
@thinkingautism: Autism and Suicide: What are #autistic concerns, & where is more research needed? #AutIMFAR-y convo: https://thinkingautismguide.com/2017/05/autism-and-suicidality-conversations.html … #IMFAR2017 #TPGA
@thinkingautism: @johnrobison on the urgent need to prioritize #autistic concerns in #autism research @statnews: https://www.statnews.com/2017/05/10/autism-science-research-studies/ … #IMFAR2017 #AutIMFAR
The chat itself was a wonderful and catalyzing experience, with autistic people and researchers (and those who are both) being incredibly frank, passionate, collaborative, and informative. The transcript below is lot of Tweets to parse, but trust us — if you’re interested in what kinds of autism research will actually benefit autistic people, it’s worth your time and eyeball strain.
ThinkingAutismGuide@thinkingautism
Welcome to #AutIMFAR chat, a discussion among #autistic & #autism research community members about autism research. #IMFAR2017
ThinkingAutismGuide@thinkingautism
#AutIMFAR is a partnership with @autselfadvocacy, @autism_women, @autchatmod, & @NOSeditorial #IMFAR2017
ThinkingAutismGuide@thinkingautism
Sincere thanks @theoriesofmind, @johnrobison, @drdeb_ah and Twitter contributors, for help with Qs. #AutIMFAR #IMFAR2017
Looking for the #AutIMFAR questions? Click here: https://twitter.com/search?f=tweets&q=%23AutIMFAR%20%20from%3A%40thinkingautism&src=typd … #IMFAR2017
The participants were an excellent cross-section of autistic people and autism researchers (and some are both, of course).
ThinkingAutismGuide@thinkingautism
If you’re joining #AutIMFAR today, let us know who you are. I’m @shannonrosa, TPGA senior editor, will be moderating the chat. #IMFAR2017
Hi, I’m Carol Greenburg. I’m one of the editors at @thinkingautism I am also the autistic mother of an autistic teen #AutIMFAR
AutismWomen’sNetwork@autism_women
I’m Corina, the Vice President of AWN, here at IMFAR #AutIMFAR
This is @drdebah as a researcher, participating in the #AutIMFAR!
Steven Kapp and I, @drdebah, will both be tweeting our response thru my twitter! #sharingiscaring #IMFAR2017 #AutIMFAR
Elizabeth Bartmess here helping represent #autchat for #AutIMFAR! I think we’ll have some other #autchat community members here tonight too.
I’m helping represent the #autchat community, a twitter chat by/for autistic & similar people, running for >2 years. #AutIMFAR
Personally, I’m a former researcher, currently a writer, autistic. Personal account @theoriesofminds. #AutIMFAR
I’m the Executive Director at @autselfadvocacy, and an autistic woman with other disabilities myself. Excited for #AutIMFAR!
Hi i’ll be here a little while. I’m 31, from the usa, autistic, queer, trans, crazy. #AutIMFAR
Hi #AutIMFAR! I’m Meryl Alper, an Asst. Prof. at Northeastern U. in Boston, studying the media & technology practices of autistic youth.
.@JHMarble is at #IMFAR2017 reporting for NOS Magazine. #AutIMFAR
NOS Magazine is the only professional, paid publication entirely by and for neurodivergent people. #ActuallyAutistic #AutIMFAR
Hi all #autimfar folk, I’m Deborah Budding, neuropsychologist specializing in neurodevelopment. Especially interested in sensory/motor stuff
Sue Fletcher-Watson@SueReviews
Hi, I’m Sue, autism researcher based in Edinburgh. Psychologist. #AutIMFAR
Hi All. I’m Aspie volunteer for autism mental health research in UK. #autimfar
Hi #AutIMFAR! I’m Chris Gunter, a researcher in autism genetics, science communication & engagement. Excited to hear different perspectives.
autselfadvocacy@autselfadvocacy
I’m Savannah, I do social media here at ASAN. 🙂 #AutIMFAR
CRAE are in the room – lovely to see lots of familiar faces & new ones! 🙂 CRAE are a group of autism researchers from London, UK #autimfar
I’m participating in the #AutIMFAR chat! https://twitter.com/thinkingautism/status/862827599898202112 …
Hi! I’m an autism researcher based at @CRAE_IOE. I’m also #socialmedia editor at @journalautism – looking forward to chatting! #autimfar
Spectrum is joining today’s #AutIMFAR at #IMFAR2017 — @ClaireHCameron tweeting!
I’m Emily Paige Ballou, volunteer for the Autism Women’s Network and co-editor of our recent anthology! #AutIMFAR ( https://www.amazon.com/What-Every-Autistic-Wishes-Parents/dp/0997504528/ref=sr_1_1?ie=UTF8&qid=1484509446&sr=8-1&keywords=what+every+autistic+girl+wishes+her+parents+knew …)
HI am Chris Connor, autistic & housing campaigner. Interested how autism research can help improve QoL in area of housing policy #AutIMFAR
Hello all. Julia Joy. #ActuallyAutistic and Mom of Aspie #AutIMFAR
Hi, I’m an autistic doctoral student researching in field of science & med rhetoric. Also coordinate @DREAMdisability. #AutIMFAR
Beth Greene Perera@Old_Snowflake
#AutIMFAR Hi. I will watch this chat but it is too hard for me to follow in real time
Andy, here. Recent PhD from @UVA & future faculty at @UNT_KHPR. I focus on motor skills & phys activity of individuals & families. #AutIMFAR
shamelessly an aspie with sensory impairment & sensitivities = unique perspectives. interested in psychology among other topics #autimfar
Christina Nicolaidis@cnicolaidis
Joining #AutIMFAR. I’m the co-director of AASIPRE. Doing participatory research with autistic adults since 2006 (but 1st time tweeting).
I’m Aria Sky, 34yo late-dx Autistic USian mother, writer, musician. Hoping to participate a bit in the #autimfar chat!
AutisticMathie@TheIteratedTri0
Joining as an #ActuallyAutistic plural collective #AutIMFAR
I’m Lorcan Kenny, PhD researcher @CRAE_IOE interested in everyday executive function, joining #AutIMFAR a day late due to clash with poster https://twitter.com/thinkingautism/status/862827599898202112 …
ThinkingAutismGuide@thinkingautism
If you’re not #actuallyautistic and/or an #autism researcher, we’d be grateful for your RTs & signal boosts! #AutIMFAR #IMFAR2017
ThinkingAutismGuide@thinkingautism
Questions will be asked as Q1 etc. Please answer w/ A1, etc., & don’t forget #AutIMFAR hashtag so we can follow yr contributions. #IMFAR2017
Q1: What top three priorities would you pick for autism research, if you could?
ThinkingAutismGuide@thinkingautism
Q1: What top three priorities would you pick for autism research, if you could? #AutIMFAR #IMFAR2017
A1: Number 1 – mental health #autimfar
A1 prioritize research that helps #actuallyautistic people. #AutIMFAR
Sue Fletcher-Watson@SueReviews
A1: evidence base for autistic peer-support programmes. Creating autism-friendly classrooms. Suicide prevention. #AutIMFAR
@SueReviews A1: yes, but your third pick needs socially contextualised (sociological) research. #AutIMFAR
A1: yes, mental health & quality of life. #autimfar
A1. yikes that’s hard in 140! Better ascertainment/diagnosis; involving more people in research; community viability of treatment. #autIMFAR
A1 Sensory oversensitivities, psychotherapy (what works, what doesn’t, developing effective ones), co-conditions. #AutIMFAR #IMFAR2017
A1 I’d pick mental health, sexual/gender diversity, and idk what else #AutIMFAR
I agree and think #intersectionality has been glaringly absent from #IMFAR2017 or at least the tagged posts. #AutIMFAR https://twitter.com/endeverstar/status/862828877709692928 …
A1: Access to services in the global south; research besides genetics; impact of bullying/cyberbullying on autistic girls #AutIMFAR
Sue Fletcher-Watson@SueReviews
Good call – globalisation of autism support, understanding, acceptance is key. #AutIMFAR https://twitter.com/merylalper/status/862829058937294848 …
Q1: Research on co-occurring conditions needs to happen. Especially epilepsy and suicidality. They’re our biggest killers. #AutIMFAR
A1) Steven Kapp says reliable communication (like AAC), services, and adulthood! #AutIMFAR
A1 1. Treating co-occurring conditions in a way that doesn’t interfere w/ services Autistics are already getting. #AutIMFAR
A1 More research is needed for 1. Females 2. People of color 3. Adults #AutIMFAR
A1: autism across the lifespan, healthcare needs, and supports and services to increase self-determination & QOL. #AutIMFAR
elemental1025 🐺🐾🌕@elemental1025
A1. Quality of life w/adult focus, employment support tools. #AutIMFAR
A1) @drdebah says biomarkers for better diags, sensory reactivity, and successful adulthood. #AutIMFAR #IMFAR2017
A1: Really, it shouldn’t be down to me to choose – should be #actuallyautistic people deciding research agenda #AutIMFAR https://twitter.com/thinkingautism/status/862828414956216320 …
@LauraMayCrane *high fives* #AutIMFAR
A1. Gahan Pandina highlights the need for new tools to improve clinical trials for autism therapies: https://spectrumnews.org/opinion/q-and-a/questions-for-gahan-pandina-new-tool-may-aid-autism-trials/ … #AutIMFAR
AutismWomen’sNetwork@autism_women
A1: mental health and access to crisis support, various intersections of privilege/oppression #AutIMFAR
A1) Would also like to have more thorough assessment of difficulties included in diagnosis to make it easier to get support. #autimfar
A1. Top 3 priorities; autism & ageing, autism & mental health, autism research with more ethnically diverse groups #autimfar
@thinkingautism A1: Sensorimotor differences contributing to self-regulation and communication challenges; mental health; epilepsy #AutIMFAR
A1. @J_McPartland suggests brining brain imaging into the real world is crucial for future insight: https://spectrumnews.org/opinion/viewpoint/imaging-of-social-brain-enters-real-world/ … #AutIMFAR
A1: Homelessness in autistic community, evidence based studies on housing best practice & autism public housing policy. #autimfar
A1 Ageing and autism, Supported decision-making protocols. #AutIMFAR
Timotheus Gordon Jr.@timgordonjr
@thinkingautism A1: Integrating autistic athletes to pro and college sports, creating culture for autistic POCs, autism & sexual ids #AutIMFAR #IMFAR2017
A1 Physical activity and motor skill improvements to build QoL and help improve access to active leisure activities. #AutIMFAR
A1. Programs & conditions that improve independent living, AAC and other assistive tech, mental health over the lifespan #AutIMFAR
A1b. Also participatory research and far better rep of marginalized communities and adults in autism research – so 5? #AutIMFAR
Q1: Example of a potentially deadly co-occurring condition we know little abour: Ehlers-Danlos syndrome. http://nosmag.org/we-need-research-on-ehlers-danlos-syndrome/ … #AutIMFAR
autselfadvocacy@autselfadvocacy
A1 greater look at diversity in our communities is needed- racial, ethnic, gender (including trans folks!) LGBQ, and more #AutIMFAR
autselfadvocacy@autselfadvocacy
A1 increasing community and self determination, especially for those more likely to be put in segregated settings. #freedom #AutIMFAR
A1 & documenting/validating the insights the autistic community has been sharing for years, for a new foundation for research . #AutIMFAR
A1 #AutIMFAR. Interesting if sensory amplification, pattern recognition & multiple rapid streams of consciousness were quantified.
@thinkingautism A1) non-verbal communication (ie ASL), functionality of positive compensatory mechanisms, benefit of stimming #AutIMFAR #IMFAR2017
@thinkingautism A1. Debunking 60 years of mythology, effective psychotherapies, interventions for #allistics #autisticnotbroken #AutIMFAR
a1 rsrch in what kind of support works for ASD people in crisis/healthcare/built environments & sensory #autimfar
Timotheus Gordon Jr.@timgordonjr
@thinkingautism A1: In a nutshell, we should look into more of the cultural aspect of autism, plus intersections of race and autism #AutIMFAR #IMFAR2017
@drdebah @thinkingautism A1) This very much; more research on interventions such as Neurologic Music Therapy would be most welcome. #AutIMFAR
The ProtagofProtags!@AskAsperboy
A1. Better quality of life/ addressing comorbid conditions, how to make places more accessible, employment training. #autimfar
Great point! Re: employment training, do we know what skills need to be taught & how to teach them most effectively? #AutIMFAR #IMFAR2017 https://twitter.com/AskAsperboy/status/862832009374089216 …
A1: Outcomes for older autistic adults. Communication needs of non-verbal/non-speaking people. Co-occurring conditions. #AutIMFAR
A1: Co-occurring conditions, effective practical support for #ActuallyAutistic (esp during transitions), & mental health support. #autimfar
#AutIMFAR Research focus; anything that looks at the positives. Would be so good not to live in ‘deficit-land’. #autism
A1 1:interventions with non-autistic people to reduce stigma, 2: reducing early mortality, 3: boosting QoL for autistic people #AutIMFAR https://twitter.com/thinkingautism/status/862828414956216320 …
@thinkingautism A1: transition to adulthood; improving QoL; Autism in women #AutIMFAR #IMFAR2017
Q2: What are some really obvious-to-autistic people under-researched autism areas?
ThinkingAutismGuide@thinkingautism
Q2: What are some really obvious-to-#autistic people under-researched #autism areas? #AutIMFAR #IMFAR2017
Sue Fletcher-Watson@SueReviews
A2: autistic people benefit from peer support by other autistic people. #AutIMFAR
A2 Autism in adults. Aging. Parenting as an autistic person. Trauma. #AutIMFAR
A2. Love and sexuality in autism are under-researched — why? https://spectrumnews.org/features/deep-dive/sex-foreign-words/ … #AutIMFAR
Sue Fletcher-Watson@SueReviews
A2: autistic people feel comfortable / learn best / have good relationships in autistic-led spaces #AutIMFAR
A2 sensory differences, impact of ableism on our access to services and our health/quality of life #AutIMFAR
A2) Housing requirements, e.g. need for quiet housing. #autimfar
A2: Anything that actually affects #actuallyautistic ppl’s day to day lives – relevance of so much research isn’t clear #autimfar
A2 research that is designed to improve life for autistic people and improve cultural acceptance #AutIMFAR https://twitter.com/thinkingautism/status/862829656831008768 …
AutismWomen’sNetwork@autism_women
Q2: notice how most of our answers tend to relate to supports and services that are currently lacking? #AutIMFAR
A2: Quite a lot of social policy and practical supports #autimfar
A2: This one will be fun. #AutIMFAR
A2. The fab @robyn_steward is researching puberty & #autistic women #autimfar
A2: 1. Sleep/Stress 2. Transition into adulthood 3. Housing 4. Success strategies (comparing auties w/ ourselves) #AutIMFAR
A2: Sensory processing differences.*** Motor/movement differences*** Echolalia as alternate pathway for language acquisition. #AutIMFAR
elemental1025 🐺🐾🌕@elemental1025
A2 Tools to help autistic people explain their needs to non-autistics, for personal & in work environment . #AutIMFAR
I have been thinking we could crowd source a googledoc or something of scripts or email templates but should get paid… #AutIMFAR https://twitter.com/elemental1025/status/862831321734815744 …
Timotheus Gordon Jr.@timgordonjr
@thinkingautism A2: Sexual identity (including non-monogamy) and autistic identity as a person of color are under-researched. #AutIMFAR #IMFAR2017
yes a lot of social skills programs and professionals impose heteronormative expectations on #ActuallyAutistic people #autIMFAR #IMFAR2017 https://twitter.com/timgordonjr/status/862831377426903046 …
This so very much #AutIMFAR https://twitter.com/EyesLikeEels/status/862831827555364864 …
A2: Functional value of stims. Behavior as communication. Increased likelihood of being autistic & LGBT. #AutIMFAR
A2: Impact of bullying, abuse, & trauma on mental health, social comfort, QOL. Relationship between certain “treatments” and PTSD. #AutIMFAR
A2 Impact of motor differences on social experiences and, subsequently, social communication. Impact of gendered expectations. #AutIMFAR
Something I am very interested. As well as, motor ability’s impact on physical activity & socialization/social opportunity. #AutIMFAR https://twitter.com/juststimming/status/862832039472627713 …
@amcdphd Same; issues around core stability and voluntary vs. automatic movements are super important #AutIMFAR
A2 oh yeah and shutdown (as opposed to meltdown) and autistic burnout! #AutIMFAR
Emily Willingham🏁@ejwillingham
A2: stop w ALL THE FALSE BINARIES, like low and high function, gender binaries, etc. #autimfar
A2: “Aggressive behavior” isn’t a symptom. It’s a way for someone with communication difficulties to express something is wrong. #AutIMFAR
A2 also autistic language acquisition and learning to use aac etc framed as normal (just different) #AutIMFAR
A2: Under-researched areas – gender, sexuality, best support systems as we age, parenting while Autistic. #autimfar
A2: Both language and motor linguistic and “dialect” differences. Many #autistic people can read each other better than others. #AutIMFAR
a2/2 also: how to navigate healthcare or disability services. hospitals can easily cause ptsd #autimfar
The ProtagofProtags!@AskAsperboy
A2. Services for adult autistics/phasing out of the school system, non-autistics learning how to accept stimming behaviors #AutIMFAR
@thinkingautism A2: Ableism. Addressing our side problems, like nutritional deficits and absorption issues. Quality of life. Transitional issues! #AutIMFAR
@thinkingautism #AutiMFAR #IMFAR2017 Q2 The assumption that #autistic ppl wish to be ‘normal’ & that this is beneficial for us. Really? Research fail so far
Q3: What are some disconnects you’ve observed between research findings and autistic experiences?
ThinkingAutismGuide@thinkingautism
Q3: What are some disconnects you’ve observed between research findings and #actuallyautistic experiences? #AutIMFAR #IMFAR2017
Sue Fletcher-Watson@SueReviews
A3: so-called “lack” of theory of mind. Autistic people I spend time with are so on top of thinking about other ppls perspectives #AutIMFAR
elemental1025 🐺🐾🌕@elemental1025
@SueReviews Yes! See also: “lack of empathy”. #AutIMFAR
Yes. Researchers need to learn difference between trying to take another’s perspective & accurately understanding it #autIMFAR #IMFAR2017 https://twitter.com/SueReviews/status/862831015143776256 …
Also b/w realizing other person *has* distinct perspective, and ability to decipher it. #AutIMFAR https://twitter.com/mosaicofminds/status/862854207774359552 …
But often it’s ourselves that we come to see as inhuman or not real people. (2) #AutIMFAR
AutismWomen’sNetwork@autism_women
Q3: they ask us stuff… but then don’t listen??? And get a different result??? #AutIMFAR
A3. So many disconnects in language to even talk about research, and then surprise at why people don’t want to participate. #AutIMFAR
A3 Research needs to stop comparing non autistics with autistics. It’s like campfire apples to oranges. #AutIMFAR
A3) Huge gap between research findings and knowledge of policy makers. #autimfar
A3 Lack of inclusion of experiences—disproportionate focus on externally visible “behaviors” #AutIMFAR
AutismWomen’sNetwork@autism_women
A3: it’s kinda like the exp of minority groups who have to prove something happens to them #AutIMFAR
Sue Fletcher-Watson@SueReviews
A3: research supposedly tells us that autistic ppl are less imaginative & creative. Nonsense. e.g. @SoniaBoue @ObservatoriumF #AutIMFAR
Yes. Arguably the most creative and imaginative people I’ve ever met are fellow #autistic colleagues, family and friends. #AutiMFAR A3 https://twitter.com/SueReviews/status/862831613406658561 …
#headdesk methinks some of these researchers displaying distinct lack of imagination and extreme rigidity of thought themselves #AutIMFAR https://twitter.com/SueReviews/status/862831613406658561 …
Q3. Research: Toddlers w autism may be indifferent to eye contact. Many adults on spectrum say otherwise. https://spectrumnews.org/news/toddlers-autism-indifferent-eye-contact-study-says/ … #AutIMFAR
@Spectrum caveat: there are a lot of years of development between the toddlers studied and adults, and those years make a difference. #AutIMFAR
A3: That autistic kids in front of screens are anti-social; media/tech provide new ways to be intimate, share space & perspective #AutIMFAR
@slooterman I also wrote about “screen time” as ableist (so, more a kid-focused issue) in my 2014 book: https://dl.dropboxusercontent.com/content_link/P0lQWp0LRpL3J0ToHB4rnofajF936RwUxsAbhGt1Gku2AxWM8IaMMsS7V4QfcMp7/file?dl=1 … #AutIMFAR #IMFAR2017
@slooterman Whoops, better link: https://dmlhub.net/wp-content/uploads/files/DigitalYouthwithDisabilities.pdf … #AutIMFAR #IMFAR2017
A3: Listen to us or keep on making the same mistakes! #autimfar
A3. Research into “effective” interventions that autistic people find not so effective and even traumatizing #AutIMFAR
A3b. …and so much money on genomic research instead of into services and technologies we want to improve daily life in community #AutIMFAR
Timotheus Gordon Jr.@timgordonjr
A3: Research findings of treatments seldom involve #ActuallyAutistic experiences. Just results from medical field. #AutIMFAR #IMFAR2017 https://twitter.com/thinkingautism/status/862830822121889792 …
@thinkingautism A3) Steven Kapp says the Theory of Mind Deficit like Dr. Damian Milton talks about, #AutIMFAR #IMFAR2017
A3: Scientific community often confuses our interests with our parents interests. We are distinct people. https://thinkingautismguide.com/2017/05/you-are-not-your-child.html?m=1 … #AutIMFAR
A disconnect I’ve noticed, diagnostic criteria designed for autistic boys are incorrectly applied to girls, trans kids#AutIMFAR
A3 Studies should be designed with experiences in mind. Autistics should be involved in designing studies. #autimfar https://twitter.com/thinkingautism/status/862830822121889792 …
@thinkingautism A3) SK: the competencies of NonVerbal Autistics #AutIMFAR #IMFAR2017
A3: That autistic ppl can’t make friends, or have to have loads of friends to be happy – see http://ow.ly/54GV30bEvUZ #autimfar
A3. Some disconnects between research findings & #actuallyautistic experiences: what #actuallyautistic ppl want researched #autimfar
A3: The persistence of mouse research when #autistic people say we need support in housing/education/employment. #AutIMFAR
@thinkingautism A3) presuming competence ACROSS the spectrum of autistic abilities! #AutIMFAR #IMFAR2017
A3: It’s truly incredible how every strength can become pathologized if we just reach hard enough. #AutIMFAR
A3 To add to @KimEl and @JustStimming—research on treatments needs to look carefully at harms, including long-term harms. #AutIMFAR
Autistic Before MMR@autisticb4mmr
A3 Researchers forget that I’m a person when I participate in their autism studies and do their brain scans. #AutIMFAR
A3: Where to even start? They need to incorporate our inner experiences, not just their outward observations. #autimfar
A3: Overwhelming emphasis on basic biology, causation, & drug development, despite the urgent needs/stated goals of our community. #AutIMFAR
Emily Willingham🏁@ejwillingham
A3: Also more focus on functional analyses of environments for autistic ppl. Seems like hardly anyone does this. #autimfar #IMFAR2017
Emily Willingham🏁@ejwillingham
A3: also more focus on education, including getting out information abt how wrongwrongwrong restraints are in any environment #autimfar
A3 Add’l thought on harms – have seen people report that some treatments -> automatic compliance in dangerous/abusive situations. #AutIMFAR
@thinkingautism a3 research always pathologizes autism; seems led by PersonsWithoutAutism™ or AutismParents™ instead of #ActuallyAutistic people #AutIMFAR
The ProtagofProtags!@AskAsperboy
A3. Autistics can be overempathetic as opposed to not having any, no such thing as “extreme male brain”, we can/do fall in love. #AutIMFAR
Autistic Before MMR@autisticb4mmr
Q3 I wish the research I took part in wasn’t so pathologizing. And didn’t want to cure me. And shared their results with me. #AutIMFAR
Autistic Before MMR@autisticb4mmr
A3 Whatever research you do, it must be useful for autistics & has to help make our lives better. It has to promote understanding #AutIMFAR
A3: the disconnect between the language/framing used in research and in people’s lives is huge – I know I’m repeating myself but.. #AutIMFAR https://twitter.com/thinkingautism/status/862830822121889792 …
A3 again this is a framing issue, ToM difficulties likely result of executive function issues, can be real but not about empathy #AutIMFAR https://twitter.com/drdebah/status/862832014113751041 …
@thinkingautism A3: pathologised ontology, particularly around social interaction, empathy and the ‘male brain’ urgh. #AutIMFAR
@thinkingautism A3: Anything to do with ‘social skills’ and conceptualisation of the autistic ‘lifeworld’ #AutIMFAR
A3: #autistic ppl may understand other ppl’s perspective, but simply not agree with it. Maybe hard 4 non-autistics 2 understand? #AutIMFAR https://twitter.com/SueReviews/status/862831015143776256 …
Q4: What kinds of feedback from autistic people are most useful to researchers?
ThinkingAutismGuide@thinkingautism
Q4: What kinds of feedback from #autistic people are most useful to researchers? #AutIMFAR #IMFAR2017
It’s ALL useful – often we get no feedback and then we keep getting things wrong!!! #AutIMFAR https://twitter.com/thinkingautism/status/862832945085599744 …
@LauraMayCrane redearchers should not be afraid to ask us; often they assume, don’t listen, get it all wrong #AutIMFAR
I like to replace “having left-handedness” in statements about “having autism” to point out the silliness. #Imnotbroken. #AutIMFAR
…meaning, phrase your research as if you were mapping the genome rather than curing cancer, k? Because language travels. #AutIMFAR
A4. Most useful feedback: How to make participation in studies as easy as possible. #AutIMFAR
@thinkingautism A4) Can I say everything? We know very little about the 24/7, 365 life of autistics. #AutIMFAR #IMFAR2017
A4: Hearing about the mental, physical, and emotional labor often involved in communication for non-speaking autistic folks #AutIMFAR
Sue Fletcher-Watson@SueReviews
A4: advice which recognises the constraints (funding, methods) on my work & helps me problem solve those to deliver good results. #AutIMFAR
Christina Nicolaidis@cnicolaidis
A4 Everything – what to study, how to make the protocols / instruments accessible, how to interpret data, what to do with findings #autimfar
A4. Feedback should be specific, and of course including people with autism in designing the studies would help them succeed. #AutIMFAR
AutismWomen’sNetwork@autism_women
@girlscientist So making studies accessible to participants? #AutIMFAR
A4 @girlscientist Good because some of us are sort of stellar at designing systems. Pick us for your team. 😉 #autimfar
A4: Explain what you’re researching to people. Make appropriate materials (simple English). Presume competence when explaining. #AutIMFAR
A4. Feedback; we want your voice – must value lived experience equally #autimfar
@thinkingautism A4) SK: what autistics think are desirable outcomes! #AutIMFAR #IMFAR2017
A.4 Asking Qs relevant to people’s lived experience. @WillClinPsy @robyn_steward did so in this study: https://spectrumnews.org/opinion/viewpoint/women-autism-hide-complex-struggles-behind-masks/ … #AutIMFAR
Sue Fletcher-Watson@SueReviews
A4: the best advice is not advice but a co-creation of new ideas and knowledge as equal partners #AutIMFAR
@thinkingautism A4) SK says: desires for partnership throughout the research process! #AutIMFAR #IMFAR2017
Timotheus Gordon Jr.@timgordonjr
@thinkingautism A4: Consider ways of asking certain questions and asking autistic people first (don’t default to asking parents first) #AutIMFAR #IMFAR2017
Timotheus Gordon Jr.@timgordonjr
@thinkingautism A4: Include and cite existing works from autistic community, esp. from marginalized communities (e.g. @phineasfrogg) #AutIMFAR #IMFAR2017
Autistic Before MMR@autisticb4mmr
A4 Ask open ended questions so that we have a chance to express ourselves. Research questions are too often pathologizing #AutIMFAR
autselfadvocacy@autselfadvocacy
@autisticb4mmr #AutIMFAR also include options for non open ended- some of us struggle w/open ended and some w/closed, so allow for both!
@autselfadvocacy @autisticb4mmr A cognizant interviewer should be able to do this. Only way to provide “voice” to peoples responses. #autIMFAR
On this note though, having examples of possible responses helps too. Sometimes open-ended is too vague. Too many possibilities. #AutIMFAR https://twitter.com/autisticb4mmr/status/862838915408908288 …
@autisticb4mmr @amcdphd @autselfadvocacy There definitely needs to be an option for expanding upon the responses when desired. Often they overlook important nuances. #AutIMFAR
Autistic Before MMR@autisticb4mmr
@mamautistic36 @amcdphd @autselfadvocacy yes yes yes. I get a lot of yes or no questions I can’t possibly answer correctly. #AutIMFAR
@autisticb4mmr @amcdphd @autselfadvocacy My answer is almost never “yes” or “no” without any qualifications at all. Takes forever to decide between the two. #AutIMFAR
Autistic Before MMR@autisticb4mmr
@amcdphd @mamautistic36 @autselfadvocacy Which is sad bc context is everything. You can’t understand autism without it, can you? #AutIMFAR
@autisticb4mmr @amcdphd @autselfadvocacy YES! Just one great reason to include autistic people in research design, not just as participants!!! #AutIMFAR
A4 I’m not autistic but find it helpful when autistic people tell me how they interpret results in my research #AutIMFAR https://twitter.com/thinkingautism/status/862832945085599744 …
A4 feedback about experience of taking part in research – do we provide the right info beforehand, is feedback useful, was it fun? #AutIMFAR https://twitter.com/thinkingautism/status/862832945085599744 …
@thinkingautism A4: I’d like to find out how we (researchers) can work collaboratively with individuals with #autism #AutIMFAR #IMFAR2017
Q5: How can autistic communities support researchers whose work we value? Can we provide leverage in getting funding?
ThinkingAutismGuide@thinkingautism
Q5: How can #autistic communities support researchers whose work we value? Can we provide leverage in getting funding? #AutIMFAR #IMFAR2017
Sue Fletcher-Watson@SueReviews
A5: YES! I would love it if autistic-led organisations offered awards, certification, quality markers to groups they approve #AutIMFAR
@SueReviews Got good idea of who we would like to see getting more funding and who not! Rather than name and shame, kite-mark good allies? #AutIMFAR
A5. Yes, in our recent grant we included community engagement as a crucial feature, and it scored better because we did. #AutIMFAR
Sue Fletcher-Watson@SueReviews
This is great but not always the case. We need to change funder attitudes too. #AutIMFAR https://twitter.com/girlscientist/status/862834533288124417 …
The biggest issue in autism research – funding and funder attitudes? #AutIMFAR #IMFAR2017 https://twitter.com/suereviews/status/862835316725436416 …
@girlscientist A5 Very encouraged to hear that your grantors valued community engagement! #AutIMFAR
I think we need to organize and advocate to legislators and organizations to prioritize policies to include #ActuallyAutistic ppl #AutIMFAR https://twitter.com/thinkingautism/status/862834258699628546 …
The ProtagofProtags!@AskAsperboy
A5. Keep giving researchers valuable feedback. #AutIMFAR #IMFAR2017
@thinkingautism A5) SK: Invite them to OUR conferences and share their work. #AutIMFAR #IMFAR2017
A4 and A5: researchers also need to step away from the deficit model in sharing their design and results. #AutIMFAR https://en.wikipedia.org/wiki/Information_deficit_model …
Sue Fletcher-Watson@SueReviews
A5: anyone can claim “excellent links” w/ the community & there’s no way to tell who #actuallyautistic ppl want to be funded #AutIMFAR https://twitter.com/suereviews/status/862834421275041792 …
@thinkingautism A5: Super important to get the word out on people doing new & interesting work, such as Elizabeth Torres https://sites.google.com/site/blurbaboutmywork/home … #AutIMFAR
A5: In my experience, self-advocates FLOCK to researchers doing good work. We see the enormous, life-changing value. #AutIMFAR
A5 I think reaching out to researchers that are valued. Many, myself included, would love to hear feedback & build relationships. #AutIMFAR https://twitter.com/thinkingautism/status/862834258699628546 …
@thinkingautism A5) SK says: re funding – Potential lobbying to support/promote more autistic driven efforts #AutIMFAR #IMFAR2017
A5: If we have resources we should co-fund good research, I think we have political leverage to get funding were it needs to go #autimfar
A5) There needs to be MUCH better links between research and clinical application #AutIMFAR
I’m still hearing absolute nonsense being taught in undergrad & graduate psych programs. #autimfar
Recently, for instance, that autistic people “lack the cognitive skills to deal with emotion.” #AutIMFAR
How can this change? I talk to the people I know in this field, but on a broad scale, this has to change. #AutIMFAR
@epballou indeed. all psychology books iʻve listened have been written by #neurotypical, sighted, hearing people. let’s change that “normal” #AutIMFAR
A5 But our community lacks major resources, leverage, funding. We can’t bring influence to bear–*we* need support. #AutIMFAR
A5 I can’t tell you how many conversations I have had of: “How can we get more autistic participants to give us their stuff?” #AutIMFAR 1/?
More #autism research funders need to do things like this 👇 Needs to be genuine engagement (so often not) #AutIMFAR https://twitter.com/girlscientist/status/862834533288124417 …
A5: I (@slooterman) testified at @US_FDA last week on autism and suicide. I’m happy to do it again. #AutIMFAR
Christina Nicolaidis@cnicolaidis
A5: Autistic support has been very helpful in getting funding for AASPIRE. But it’s only ok to ask in a REAL partnership. #autimfar
A5 And the funders & institutions with those resources often refuse to take the ethical steps we need to see in order to support. #AutIMFAR
A5 (me) “Put some autistic people in charge and tell us what you’ll do with our stuff.” (them) “…No.” #AutIMFAR 2/3
A5 It’s so simple. It’s the most basic stuff. There are folks doing good work, but until we see broad change, we’re stuck. #AutIMFAR 3/3
A5: I’ve learned so much from autistic folks on Twitter; you already support when you engage, when you share resources #autIMFAR
A5. More funding bodies pushing engagement but need to TRUE engagement and effective evaluation to ensure not tokenistic #autimfar
@amcdphd A5 What are good ways to approach researchers? e.g. “Hi, I’m an aut community member, like your research, …” what to ask for? #AutIMFAR
autselfadvocacy@autselfadvocacy
@autchatmod @amcdphd This sounds like it could be useful! Also would be nice is an accessible things to look for before participating in a study #AutIMFAR
A5 @amcdphd @autchatmod Totally! I would LOVE to add to the science but, like, how? #autimfar
A5: I would love it if Autistic-led groups had lists of researchers who want to listen to us and what they’re studying currently. #autimfar
And maybe they already do, but if so, I don’t know about it. #autimfar
Timotheus Gordon Jr.@timgordonjr
@thinkingautism A5: Write, record, and blog about their work and how much their work are important to the autistic community #AutIMFAR #IMFAR2017
@thinkingautism a5 we can hook the researchers with #ActuallyAutistic people. #AutIMFAR
A5: You’ll find that many of us are happy to provide feedback on research. Ask us! #AutIMFAR
Timotheus Gordon Jr.@timgordonjr
@thinkingautism A5: We can provide leverage in getting funding, but lets also shoot for funding by creating our own sources of income #AutIMFAR #IMFAR2017
A5: If we had funding, we’d contribute to and support research. Unfortunately, many of us are in poverty. #AutIMFAR
A5 It’s often easier for autistic people to contact others (incl researchers) if we have some kind of script for what to say #AutIMFAR
elemental1025 🐺🐾🌕@elemental1025
@autchatmod And multiple modes of contact. #AutIMFAR
A5 Related to scripting: Not sure what to ask for if I approach researchers. e.g., is offering to review materials too forward? #AutIMFAR
A5: funders increasingly including “people with lived experience” on panels making funding decisions – this is one way to leverage #AutIMFAR
A5 through connecting researchers and participants – commiting to helping in funding app could help leverage support for projects #AutIMFAR https://twitter.com/thinkingautism/status/862834258699628546 …
Q6: How can autistic & autism research communities better support autistic autism researchers & increase their numbers?
ThinkingAutismGuide@thinkingautism
Q6: How can autistic & autism research communities better support autistic autism researchers & increase their numbers? #AutIMFAR #IMFAR2017
Sue Fletcher-Watson@SueReviews
A6: there must be tons of #actuallyautistic researchers NOT in the autism field. Could they mentor autistic scholars in autism? #AutIMFAR
@SueReviews …but my degree is in comp sci / comp linguistics, so my Official Academic Knowledge about autism is only tangential at best. #AutIMFAR
Your computational knowledge would be super useful for most neuro labs, though. Combine with #autism knowledge? Even better! #AutIMFAR https://twitter.com/codeman38/status/862849918511316993 …
Labs sometimes hire IT people to help w/specific projects. Maybe getting such a job would get your foot in the door? #autIMFAR https://twitter.com/codeman38/status/862849918511316993 …
A6. Modify training programs for different types of people, to encourage learning and inclusion. #AutIMFAR
A6: This is really hard. Some autistic researchers don’t ‘out’ themselves as autistic, and this should be their choice. #autimfar
autselfadvocacy@autselfadvocacy
A6 signal boost the work of autistic researchers! Make sure ppl know names so when a paper comes more likely to recognize & read #AutIMFAR
AutisticMathie@TheIteratedTri0
@thinkingautism A6 allow for accommodations such as low lighting, breaks during the workday #AutIMFAR
Emily Willingham🏁@ejwillingham
@thinkingautism A6: Create envt that makes those already among you comforable enough to say so. Pathologizing tone, cure focus alienate #AutIMFAR #IMFAR2017
A6 I’ve encouraged people who can’t be out to join #autchat chats under pseudonyms for support. #AutIMFAR
AutismWomen’sNetwork@autism_women
Q6: make it safe for autistic researchers, professional trained or citizen scientists, consider social model of disability #AutIMFAR
@thinkingautism A6) Perhaps there should be directed funds from Autism Orgs specifically increase autistic researcher visibility #AutIMFAR #IMFAR2017
Q6: I hope that making autism research more visible in spaces that scholars don’t immediately think of as “about” autism helps #autIMFAR
I think living wage is important while people are working through higher education. Be a mentor and help others coming up. #AutIMFAR https://twitter.com/thinkingautism/status/862835680807759873 …
autselfadvocacy@autselfadvocacy
@EyesLikeEels Yes! Absolutely- living wage and access to supports can make a huge diff for academics and researchers esp those w/o tenure #AutIMFAR
I think autistic researchers also need more platforms to combat media tendency to discuss autism negatively/as epidemic #AutIMFAR https://twitter.com/thinkingautism/status/862835680807759873 …
AutisticMathie@TheIteratedTri0
Question: how should calling out ableism in academic materials be handled? I say direct is best but maybe others have diff ideas? #AutIMFAR
A6) Most researchers & clinicians are still trained in an outdated cortico-centric model of brain development; has to be updated #AutIMFAR
A6 Recognize what it’s like to work in a field where your colleagues talk about your community like animals in a zoo. Start there. #AutIMFAR
Timotheus Gordon Jr.@timgordonjr
@thinkingautism A6: Cross promoting works important to the community or creating platforms where we can share our works. #AutIMFAR #IMFAR2017
AutisticMathie@TheIteratedTri0
@thinkingautism A6 cont also more flexibility in how work is done, somehow. If there is a prob w ableist lang in materials, allow callouts #AutIMFAR
A6 @JustStimming BOOM! #autimfar
A6. Need to respect autistic researchers wishes re: disclosure of diagnosis & work to support them #autimfar
Q6 More support of autistic students interested in entering a range of research fields: scholarships, mentoring, internships… #AutIMFAR
A6 Institutions need to recognize added value of Autistic study designers. Hire autistics b/c of their autism not despite it. #AutIMFAR
A6) One national/international website where diagnosed auties can register to volunteer for research, feedback, etc. #autimfar
A6: Financial support. Offer scholarships for autistic autism researchers. Help create mentorship and pathways to success. #AutIMFAR
@thinkingautism a6 speak up, make noise online & in meatspace; autistic peeps will find you & fortify your words #AutIMFAR
What about web-based research? Many of us can actually respond then, in our own time. +the reach is better than local studies. #autimfar
Autistic Before MMR@autisticb4mmr
A6 I think? Are there any sociology of autism there? We know about deaf culture. I can’t find much on autism culture. #AutIMFAR
check out #autisticsinacademia posts about autistic cultural identity #autIMFAR https://twitter.com/autisticb4mmr/status/862844039204265984 …
@autisticb4mmr There are a growing number of people working in this area, but funding is a huge issue. #AutIMFAR
@thinkingautism A6: Someone funding the Participatory Autism Research Collective (PARC) #AutIMFAR #IMFAR2017
A6 tricky – there are many already who don’t disclose diagnosis but making university better for autistic people would be a start #AutIMFAR https://twitter.com/thinkingautism/status/862835680807759873 …
Q7: What shifts have you seen in inclusion of autistic community feedback on research over time? How can this improve?
ThinkingAutismGuide@thinkingautism
Q7: What shifts have you seen in inclusion of #autistic community feedback on research over time? How can this improve? #AutIMFAR #IMFAR2017
Similar issue raised during #AutiMFAR: researchers with autism may not wish to self-identify for many reasons; must respect that. #IMFAR2017
Yes, normalized society can’t both reject us and then seem confused about why we won’t or can’t participate #AutIMFAR #IMFAR2017 #autistic https://twitter.com/girlscientist/status/863051450087124992 …
A7. The feedback from #AutIMFAR and #IMFARChat seem to speak loud and clear: Actually talk to people!
Sue Fletcher-Watson@SueReviews
A7: I am encouraged by the interest PhD students have in learning about good engagement #AutIMFAR
A7. Social media has been a great help in hearing community feedback in autism research! I’ve learned tons here. #AutIMFAR
@thinkingautism A7) There is a trend for more research on nonverbal autistics, which is real nice. #AutIMFAR #IMFAR2017
Emily Willingham🏁@ejwillingham
@thinkingautism A7: hv seen+ signs but still resistance from some. As @autism_women suggests, disability studies classes for all.#AutIMFAR #IMFAR2017
Sue Fletcher-Watson@SueReviews
A7: …and discouraged by the battle they often have with their supervisors to embed this in their projects. #AutIMFAR https://twitter.com/suereviews/status/862836968652025858 …
It’s not just PhD students and supervisors – I have very established colleagues who just don’t ‘get it’ #AutIMFAR https://twitter.com/SueReviews/status/862837315672039424 …
Christina Nicolaidis@cnicolaidis
A7: When AASPIRE first proposed partnering with autistic adults, reviewers couldn’t imagine it. Now it’s far more accepted. 🙂 #autimfar
@thinkingautism A7) That time where researchers realized autistic kids grow into autistic adults, that time was nice. #AutIMFAR #IMFAR2017
Timotheus Gordon Jr.@timgordonjr
@thinkingautism A7: I think researchers and journalists are more ‘properly’ trained to consider autistic community feedback. #AutIMFAR #IMFAR2017
autselfadvocacy@autselfadvocacy
A7 this has come a very long way! I remember yrs ago 1st hearing about AASPIRE & being blown away. Field has ways to go still tho #AutIMFAR
A7: Most studies I read on autism/kids/tech are majority abt middle/upper-class white boys, yet make universal claims. Do better! #autIMFAR
@SamCampbell1933 @ccc_uconn I’ve been working on it! Some of it in my recent book: https://mitpress.mit.edu/books/giving-voice … on disability and intersectionality #autIMFAR
The ProtagofProtags!@AskAsperboy
A7. Slowly but surely, there’s been more services opening for nonverbal and verbal autistic adults in the community. #AutIMFAR #IMFAR2017
A7 There’s a definite positive trend. More positive/accurate framing, more acknowledgement of our voices & of past mistakes #AutIMFAR 1/2
A7 And more involvement of self-advocates in research. And hey, as a result, better research, too! #AutIMFAR 2/2
Timotheus Gordon Jr.@timgordonjr
@thinkingautism A7: Researchers and journalists should include feedback and works from autistic ppl from marginalized comm. more often #AutIMFAR #IMFAR2017
CRAE@CRAE_IOE A7. ShapeARUK seminar series in UK working for inclusion: http://mediacentral-stream.ucl.ac.uk/flash/24517703_hd.mp4 … #autimfar
A7: Researchers confuse embracing neurodiversity with not wanting to talk about actual problems. #AutIMFAR
@NOSeditorial {screams into the abyss} “This!!!!!!!!!!!!” #AutIMFAR
Yes! Acceptance and neurodiversity don’t mean “doing nothing” about things that are issues. #AutIMFAR https://twitter.com/NOSeditorial/status/862839116693680128 …
@thinkingautism a7 at least a lot more people are openly and shamelessly autistic and not just closetaspies. it’s a start #AutIMFAR
Autistic Before MMR@autisticb4mmr
Q7 The biggest shift is @autselfadvocacy exists and reminds us we aren’t broken. I’m slowly becoming more publicly austistic now #AutIMFAR
@thinkingautism A7: This http://www.shapingautismresearch.co.uk #AutIMFAR #IMFAR2017
Q8: For people with experience interfacing with both communities: What has surprised you about each?
ThinkingAutismGuide@thinkingautism
Q8: For people with experience interfacing with both communities: What has surprised you about each? #AutIMFAR #IMFAR2017
@thinkingautism A8) The patience and forgiveness of the autistic community for the fuck-ups and missteps of autism researchers. #AutIMFAR #IMFAR2017
Christina Nicolaidis@cnicolaidis
A8: Academic community’s not-so-well-veiled stigma re my autistic colleagues. #autimfar
Christina Nicolaidis@cnicolaidis
A8 (part 2): Autistic partners’ willingness to collaborate and keep working with us, even when we mess up. #autimfar
@thinkingautism A8) The willingness to autism researchers to LISTEN to baby sibs when we come in and wanna do better. #AutIMFAR #IMFAR2017
A8. Most of us today have stressed the importance of applied research, but basic research is important. Can’t predict benefits… #AutIMFAR
theories of minds@theoriesofminds
A8 I’ll answer this from personal account—the importance autistic community places on stimming surprised me. #AutIMFAR
A8 @theoriesofminds Think of stimming as free valium. #autimfar
@thinkingautism A8) The graciousness of #actuallyautistic people in dealing with professionals who don’t understand them #AutIMFAR
Sue Fletcher-Watson@SueReviews
A8: when I started working more closely w/ autistic ppl there was a lot of distrust & anxiety. I’m happy that’s now not the case. #AutIMFAR
A8. …but often basic (and yes even genetics) research leads to all kinds of things that will be beneficial. #AutIMFAR
Emily Willingham🏁@ejwillingham
@thinkingautism A8: How rigid researchers can be in seeing autistics as rigid while ignoring how flexible autistic ppl are being w them #AutIMFAR #IMFAR2017
The lack of communication and progress is just… beyond words really #AutIMFAR https://twitter.com/thinkingautism/status/862837896868356097 …
A8. Often, their priorities are aligned, but communication between the two is lacking. https://spectrumnews.org/opinion/viewpoint/before-talking-about-autism-listen-to-families/ … #AutIMFAR
A8) SK says: confirmation biases can create rigidities and rationalization in both communities. #AutIMFAR #IMFAR2017
A8. Researchers: Lack of understanding and realisation you are working with REAL people!! #autimfar
A8) While stimming is something EVERYONE does, autistic folks know more about it than anyone & aren’t given credit #AutIMFAR
Timotheus Gordon Jr.@timgordonjr
@thinkingautism A8: I could collaborate with autism researchers now and some have similar values that I share, like social model. #AutIMFAR #IMFAR2017
Timotheus Gordon Jr.@timgordonjr
@thinkingautism A8: Also shocked that despite increased collabs, autistic community and autism researchers are still far apart #AutIMFAR #IMFAR2017
Q8. << [not sure if that number is right now, but 8 in an hour challenges my writing] Collaboration will require respect of… #AutIMFAR
Q8: I’m often surprised by how little professionals who’ve spent their careers working on autistic people actually know about us. #AutIMFAR
Q8. Researchers & fellow auties I met were so knowledgeable re psychology & autism – huge contrast with my experience of doctors. #autimfar
Oh yeah! See new @CRAE_IOE research – https://theconversation.com/gps-urgently-need-training-on-autism-77301 … #AutIMFAR https://twitter.com/hanselasper/status/862841266970800131 …
Timotheus Gordon Jr.@timgordonjr
@thinkingautism A8) I think some autism researchers still latch on archaic ideas and myths of autism, despite increase of self-advocacy #AutIMFAR #IMFAR2017
A8 I, a speaking autistic, often feel I have more in common w/ partially speaking autistic son, than I do with many non-autistics #AutIMFAR
Timotheus Gordon Jr.@timgordonjr
@thinkingautism A8) About autistic community in general…I hate to say it, but can we PLEASE embrace intersectionality?! #AutIMFAR #IMFAR2017
PLEASE, so important. Can’t have ethical conversation about autism research and services w/out discussing intersectionality #AutIMFAR https://twitter.com/timgordonjr/status/862841641073291264 …
Q9: What disconnects do you see between autism research and clinical practice?
ThinkingAutismGuide@thinkingautism
Q9: What disconnects do you see between #autism research and clinical practice? #AutIMFAR #IMFAR2017
AutismWomen’sNetwork@autism_women
Q9: all of them #AutIMFAR
A9 All of them. (Lack of connection between research & clinical practice seems common in many fields incl autism-related) #AutIMFAR
Sue Fletcher-Watson@SueReviews
A9: clinic appointments don’t come with basic autism supports – photos of the location, low stimulation environments etc. #AutIMFAR
Sue Fletcher-Watson@SueReviews
If you’re not respectful to ALL autistic people you’re not respectful to ANY autistic people #AutIMFAR
Q9: I think it’s an ecology of disconnection: autism research, clinical practice, informal and formal learning spaces, communities #autIMFAR
A9. It’s important to do the appropriate research to establish an evidence base for clinical practices before implementing them. #AutIMFAR
Emily Willingham🏁@ejwillingham
A9: A grand canyon-sized gap lies btw research that helps autistic ppl most & clinical practices that serve NTs most #autimfar #IMFAR2017
Christina Nicolaidis@cnicolaidis
A9: Severe over-estimation in clinical practice of the evidence base supporting ABA or other early intervention strategies. #autimfar
A9. Disconnect btwn fundamental research + people’s lived experience. Young adults case in point: https://spectrumnews.org/features/deep-dive/twenty-something-free-fall/ … #AutIMFAR
Q9 Drs read reports to get 411 about “disease”. There’s only the language of reports to change attitudes. Still pathologized. #autimfar
@thinkingautism A9) Differences in terminology, ableist approaches, mind-body gulf, to name a few #AutIMFAR
A9 Autistic ppl are adults for the vast majority of our lives. But adults are barely a footnote in the overall research agenda. #AutIMFAR
Especially adults who don’t fit the ‘uber-geek’/violent myths, or those who are LGBT+ #AutiMFAR https://twitter.com/JustStimming/status/862840487551664131 …
A9: Once had to try to make appt. w/ researcher who had no voicemail, no email. I mean, srsly? #autimfar
A9 This. We need help focused on our own identified needs. Too often it focuses on convenience for non-autistic people. #AutIMFAR https://twitter.com/ejwillingham/status/862840249759617025 …
@thinkingautism A9) not putting into practice/translating our science knowledge into reality in real time. I.E. autistic designed waiting rooms #AutIMFAR
@drdebah @thinkingautism i don’t think i’ve ever been to any waiting room fit for my autistic & sensory needs. (dark & quiet please) #AutIMFAR
Emily Willingham🏁@ejwillingham
A9: & worst research is done in service of NT desires; naturally, clinicians who are largely NT prefer that. ABA, ahem. #autimfar #IMFAR2017
Sue Fletcher-Watson@SueReviews
A9: mental health care pathways don’t cater for autistic ppl (nor do any primary care services) #AutIMFAR
@SueReviews could not agree with you more! i hate medical environments, being touched & loud, bright indoor places #autimfar
A9 So that research in lab translates to real world, need input from autistic ppl and professionals throughout research process #autimfar
A9: The entrenchment of clinical practice to the medical model of disability, were research is starting move from that. #AutIMFAR
Emily Willingham🏁@ejwillingham
A9: & failure to address clinical needs of specific populations, like autistic women (menopause, OB-GYN needs, etc.) #autimfar
@thinkingautism a9 being even excluded from research because of disability! clinical practices also often not accessible (online/meatspace) ♿️ #autimfar
Should be considered an ethical issue that researchers/clinicians dealing with autistic people have basic knowledge #autimfar
autselfadvocacy@autselfadvocacy
A9 anyone doing research on how well the research gets applied to clinical, esp in areas being mentions tonight? Wld love to know #AutIMFAR
autselfadvocacy@autselfadvocacy
This area of research is so important esp in policy making contexts but isn’t framed as exciting to the public! #AutIMFAR
Many clinicians who market themselves as experts have little or no knowledge of research. Ask about qualifications if possible #AutIMFAR https://twitter.com/autselfadvocacy/status/862841516536016897 …
A9 Burns my biscuits that there is so little support 4 autistic women’s healthcare. I find menopause + autism quite a challenge. #AutIMFAR
Timotheus Gordon Jr.@timgordonjr
@thinkingautism A9: Who embraces evidence based practice & who are cronies of fads like #antivaxx or GF Diet cure? #AutIMFAR #IMFAR2017
The ProtagofProtags!@AskAsperboy
A9. There seems to be big pushes for ABA, but it seems to cause a lot of trauma for autistics. #AutIMFAR #IMFAR2017
A9 @AskAsperboy Re: ABA. “It seems to cause trauma” doesn’t even begin. #talktoautistics #autimfar
The ProtagofProtags!@AskAsperboy
@dianejwright Of course not. I havent been to a therapy that’s helped me deal with much of anything the non-autistic world does. Just been hurt #AutIMFAR
@dianejwright Yes, we can. So many years of it… And just reading this made me start to tear up. #AutIMFAR
Q9. Need a lot more than 130 character to answer that – could write a book on it!! #autimfar
A9) Lack of language access to get evaluation, services, or even advocacy and support. #autimfar #intersectionality
Autistic Before MMR@autisticb4mmr
Did I A9 yet? A neurologist wanted me institutionalized based on spending 5 minutes with me. Seriously. #AutIMFAR
Autistic Before MMR@autisticb4mmr
A9 I don’t know how to word this. Autism experts need to know how to deal with kids. When I was diagnosed, many didn’t. #AutIMFAR
@thinkingautism A9: where to start!?! #AutIMFAR
so little on this its just absurd. someone said everything earlier and I’m saying everything on this one for sure #autIMFAR #IMFAR2017 https://twitter.com/thinkingautism/status/862839838243934208 …
A9: I get so frustrated at the sheer amount of autism research that doesn’t even *consider* auditory/visual processing issues… #AutIMFAR
A9 …given how significantly sensory processing has played into my own experience as an autistic person. #AutIMFAR
…actually, that’s probably better tagged as A3, now that I read the questions again. Seriously, #AutIMFAR is sensory overload in itself! 😄 https://twitter.com/codeman38/status/862857009863032832 …
Q10: Any topics we’ve missed that you’d like to discuss?
ThinkingAutismGuide@thinkingautism
Q10: Any topics we’ve missed that you’d like to discuss? #AutIMFAR #IMFAR2017
A10 Would be great to have research on what self-advocacy is most effective in navigating systems (e.g. healthcare) #AutIMFAR
autistic researchers & participants, active listening & willingness to accept differences, communication & sensory accommodations #AutIMFAR
NOT avoidance or training to behave like non-autistic, & value of inclusive research that motivates hard work of making it happen. #AutIMFAR
Sue Fletcher-Watson@SueReviews
A10: how can researchers and the autistic community combine forces to change policies and funder priorities? #AutIMFAR
A10. If you participated in a research study on autism, what/how much do you want to know about its conclusions, in the end? #AutIMFAR
The ProtagofProtags!@AskAsperboy
@girlscientist @JustStimming I’d love to find out the study conclusions, and if I could be of further service in studies later on. #AutIMFAR
Q10: Love to know from #actuallyautistic adults how they think kid-version of them would have wanted to participate in research #autIMFAR
A10 #AutIMFAR https://twitter.com/theoriesofminds/status/862810726682906624 …
A10 The lack of interest in hidden Autistics. Once we know, you should learn how we went unseen. We can tell you! #autimfar
@thinkingautism A10) SK says: More practical, contextualized research with cross disability applications. science/research behind services. #AutIMFAR
A10. for example, would you like a newsletter about the results? A seminar with the researchers? To read the paper? What’s best? #AutIMFAR
@girlscientist I’d like to know as much as possible. When I participate in a study, I want to at least be given a decent summary. #AutIMFAR
@girlscientist Having multiple options and mediums for accessing study results would be fantastic! Bc we’re all different #AutIMFAR 🙂
@thinkingautism A10)…cannabis…#AutIMFAR #IMFAR2017
Timotheus Gordon Jr.@timgordonjr
@drdebah @thinkingautism The barriers: Feds, states who don’t legalize it, and how people could think that autistic people are too good for MJ. #AutIMFAR #IMFAR2017
A10: How can autism research improve on multidiscipline work? I like to see more cross-discipline research. #AutIMFAR
AutismWomen’sNetwork@autism_women
Q10) trauma in the autistic community #AutIMFAR
A10: Until adult dx becomes common & affordable, research results (like gender ratios) will be skewed http://nosmag.org/autism-self-diagnosis-is-not-special-snowflake-syndrome/ … #AutIMFAR
I have spent so much of my life masking my autism, I’d like 2 spend the rest learning how to unpass #AutIMFAR
I have seen this sentiment echoed by SO many people. #AutIMFAR https://twitter.com/Aspieadvocate/status/862842618429947904 …
elemental1025 🐺🐾🌕@elemental1025
@Aspieadvocate It’s like finally being given the correct owner’s manual! I want to learn how to use it! #AutIMFAR
Indeed. Unmasking leading to a more authentic life and better wellbeing. #AutIMFAR #IMFAR2017 #MentalHealthAwareness https://twitter.com/Aspieadvocate/status/862842618429947904 …
A10: Cost and undue difficulty of getting evaluated for adults. #autimfar
@epballou “here are some pictures of frogs…” 🙄 the same tests for white boys #AutIMFAR
A10: I’d really love to have more #ActuallyAutistic science writers for NOS Magazine. #AutIMFAR
A10 @NOSeditorial Yes! Why pay $$$ for someone to tell me what’s as obvious as the nose on my face? Will add to research tho #autimfar
@dianejwright I think that research that demonstrates the obvious has value because political policy need concrete, quantitative evidence. #AutIMFAR
Timotheus Gordon Jr.@timgordonjr
@thinkingautism A10: How can autistic people enter and thrive in autism research and journalism, and who to turn to for mentorship? #AutIMFAR #IMFAR2017
@timgordonjr @thinkingautism Re: Journalism, there are autistic journalists who may be available for mentorship/advice. http://nosmag.org/disability-is-not-an-asterisk-eric-garcia-interviews-dylan-matthews/ … #AutIMFAR
A10: Issues that I don’t often read about in research that are HUGE challenges for me… #autimfar
-Exposure anxiety -Selective mutism -Alexithymia -Auditory processing issues #AutIMFAR
SLP later confirmed this. How do you know about yet not investigate a large population of adults w/auditory processing issues? /2 #autIMFAR https://twitter.com/epballou/status/862843967829889024 …
a10 interesting to know more of the intersectionality (other disabilities seem common, glbtqia etc issies) #autimfar
Autistic Before MMR@autisticb4mmr
A10 Talk to me, not my parents. That’s how you learn about autism. #AutIMFAR
AutisticNotSilent@AutismDogGirl
also gender, sexualitysensory issue, autism and PTSD #AutIMFAR https://twitter.com/thinkingautism/status/862829656831008768 …
Yes! & proprioception. If you bump into other kids in line b/c you don’t know where your body is in space, seen as social problem #AutIMFAR https://twitter.com/JustStimming/status/862832039472627713 …
Auditory processing, too! Of course it’s going to affect socialization if you can’t easily hear one person’s voice in a crowd. #AutIMFAR https://twitter.com/mosaicofminds/status/862855343860318208 …
That no one else thinks or feels like I do is a lesson I had down pat from toddlerhood. #AutIMFAR
Autism researchers have said in past that #autistic kids see other people as furniture…. (1) #AutIMFAR https://twitter.com/epballou/status/862861394961719296 …
@epballou Old psych theory of “reflected appraisal”: 1) People keep telling you that you are [x], and treat you as such… #autimfar
@epballou …and pretty soon, 2) you start seeing yourself as [x]—and behaving as such. #autimfar
A10: {yells into the void again} *autism and pregnancy!!!!!!* #AutIMFAR
Seriously, this is probably our #1 request for more information at AWN. And we don’t have any. #AutIMFAR https://twitter.com/epballou/status/862887402196664320 …
ThinkingAutismGuide@thinkingautism
Thank you everyone for an amazing #AutIMFAR chat! We’ll have a summary up soon. #IMFAR2017
#AutIMFAR closing with #ASL clapping, my heart is singing!! #IMFAR2017
Thank you @thinkingautism and all participants for an excellent inaugural #AutIMFAR!
@thinkingautism Thanks for including me! It was amazing #AutIMFAR
Thank you so much @shannonrosa for a great #AutIMFAR twitter chat!
autselfadvocacy@autselfadvocacy
Thank you everyone! Feel free to keep chatting there’s been so many great convos tonight! #AutIMFAR
Thank you so much @shannonrosa for organising such a great chat – what a room of fab people! #autimfar
Thanks all. DM me with questions. You know, to #talktoautistics. 🙂 #autimfar
.@thinkingautism this was fantastic! Looking forward to reading more responses I missed over the next few days. #AutIMFAR
Timotheus Gordon Jr.@timgordonjr
No no, thank YOU for putting the #AutIMFAR chat together, along with the contributors who helped out! https://twitter.com/thinkingautism/status/862843163291000833 …
@thinkingautism Thank you and the participating researchers & journalists for hosting #AutIMFAR chat. Now to go back & read others… not able to during…
Thank you, #AutIMFAR! And get excited about our upcoming coverage of #IMFAR2017.
If any #AutIMFAR participants are interested, please help support NOSmag, neurodivergent journalism #IMFAR2017 https://www.patreon.com/NOSmag
Huge thanks to organisers & contributors. #autimfar
So many good tweets. Can’t keep up with volume to RT everything! #AutIMFAR
Enjoying reading #AutIMFAR. Lots of good answers here.
Thank you all participating in #AutIMFAR chat. I’m learning a lot.
Sorry to miss the last half of #AutIMFAR; too many great convos were going on to keep up.
Great chats yesterday for@#AutIMFAR & #IMFARChat. It was awesome connecting with everyone; I hope it’s in person @ #IMFAR2018.
Agreed – thanks to all for tweets for many who can’t be there. Just catching up on #AutIMFAR too https://twitter.com/KatieCebula/status/862979366170619906 …
I think this is the first time I’ve ever *wanted* to be at IMFAR. Thanks, #AutiMFAR!
The discussion continued even after #AutChat ended, which was cool.
Discussion at our table #IMFAR2017: how do we find people w/autism in our areas to help design research studies? #AutIMFAR
Some of the autism research that’s needed is literature review of other fields for applicable strategies. #AutiMFAR
Eg: apraxia that interferes with movement for communication isn’t unique to autism–what’s been tried for other syndromes? ?#AutiMFAR
Autism research happens in a behaviorist silo but it doesn’t have to. Not all conditions have this research culture problem. #AutiMFAR
For Rhett syndrome, interest in teaching intentional movement for communication is treated as legitimate. #autIMFAR
In the autism world, it’s very hard to talk about movement issues without being treated as a quack. This needs to change. #AutiMFAR
And one reason it needs to change is that there’s a staggering amount of quackery surrounding autism and movement. #AutiMFAR
The presumption that only ABA is “evidence based” creates a fertile environment for dangerous quackery. #AutiMFAR
If you tell people that being “evidence based” means ignoring reality in favor of ABA, you’re teaching them to devalue research. #AutiMFAR
Operant conditioning is not a sufficient explanation of the impairments autistic people have. #AutiMFAR #ActuallyEvidenceBased
When a condition gets declared to be ‘not actually autism, but something else’, the research tends to get a lot better. Why? #autIMFAR
Autism research is a cesspool of lack of rigor and it *doesn’t have to be*. #autIMFAR.
“Not evidence-based” gets used to mean both “proven ineffective” and “not tested in studies”. We need to stop conflating. #autIMFAR
“Evidence based” needs to mean something. First and foremost, it needs to mean trying to figure out what’s true and what isn’t. #autIMFAR
Something I’d like to know more about is risk factors for the progressive form of autistic movement disorders. #AutIMFAR
@CRAE_IOE @thinkingautism @shannonrosa Main themes of #AutIMFAR #IMFAR2017 Ableism, Double Empathy problem / better understanding, interventions for non-autistics, social supports
@CRAE_IOE @thinkingautism @shannonrosa #IMFAR2017 #AutIMFAR Benefits from being autistic, gender fluidity, experience not just observation of behaviour, harms, social change…
@CRAE_IOE @thinkingautism @shannonrosa #IMFAR2017 #AutIMFAR Disconnect with practice, Design, Applying all of the above to work with less verbal autistic people.
@CRAE_IOE @thinkingautism @shannonrosa Things one doesn’t see in #AutIMFAR #IMFAR2017 social communication, social skills, behaviour modification, genetic research, early int.
