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| Some of the onsite #AutINSAR participants, left to right: Jon Adams, Sara Luterman, Donna Bish, Andrew Colombo-Dougovito, Lily Levy, Laura Crane, Mel Bovis, Carol Greenburg, Georgina Perez Liz, and Shannon Rosa. Not pictured: Jelle van Dijk Photo by Josie Blagrave. [Image description: Neurodiverse adults smiling and posing together] |
The #AutINSAR chat was an in-person and online Twitter discussion about autism research priorities, with the conversation taking place directly between autistic and/or autism researchers on May 11, 2018, at #INSAR2018, the International Society for Autism Research conference in Rotterdam, Netherlands.
Many thanks to participants, and partners NOS Magazine, Autistic Self Advocacy Network, Autistic Women and Nonbinary Network, autchat, and We Are Like Your Child.
We discussed the following questions:
Q1: What should be the top three priorities for autism research?
Q2: Which topics do #ActuallyAutistic people discuss that are missing from research conversations?
Q3: What kind of technology research do you think would most improve #ActuallyAutistic people’s lives?
Q4: What are examples of existing autism research that look promising for helping #actuallyautistic people?
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: How can we better support #ActuallyAutistic autism researchers?
Q8: Any topics we’ve missed that you’d like to discuss?
Welcome to #AutINSAR chat, a conversation between #autistic people & #autism researchers about autism research priorities. #INSAR2018
— Thinking Person’s Guide To Autism (@thinkingautism) May 11, 2018
Who participated in #AutINSAR?
Preparation for #AutINSAR : Comfy chair, check. Wi-Fi, check. Caffeination, check. Open mind and heart, working on it.
— Douglas Bass (@douglasbass) May 11, 2018
If you’re joining #AutINSAR today, let us know who you are. I’m @shannonrosa, TPGA senior editor, will be moderating the chat. #INSAR2018
— Thinking Person’s Guide To Autism (@thinkingautism) May 11, 2018
Getting ready for the highlight of my #INSAR2018 calendar – #AutINSAR – let’s go! 🎉@thinkingautism
— Laura Crane (@LauraMayCrane) May 11, 2018
prep for #AutINSAR: purring cat nearby – check. drink – check. Corina Becker for the Autistic Women & Nonbinary Network @awnnetwork_ here!
— Corina Lynn Becker (@CorinaBecker) May 11, 2018
Are you at #INSAR2018! Come up to the press room ASAP to hang out with the #AutINSAR chat (including me!) in person. We have snacks! Even if you can’t make it, you can still engage in an awesome dialogue between #ActuallyAutistic adults and researchers by following #AutINSAR!
— Sara Luterman (@slooterman) May 11, 2018
Hi! @S_daVanport here with AWN #AutINSAR #INSAR2018
— Autistic Women & Nonbinary Network (@awnnetwork_) May 11, 2018
I’m Laura Crane – researcher at @CRAE_IOE in London, UK #AutINSAR
— Laura Crane (@LauraMayCrane) May 11, 2018
I’m Sue, I’m a developmental psychologist and I work in @PWCentre doing autism research – trying to make it as participatory and co-led as I can get (not perfect, I freely admit!)#AutINSAR
— Sue Fletcher-Watson (@SueReviews) May 11, 2018
hi everyone, i’m endever*, one of the #autchat mods
i’m autistic, crazy, trans, queer, a ravenclaw, a writer, a crafter
i go to university part time but am not involved in research or anything #autinsar
— ⚡️ homo qui vixit ⚡️ (@endeverstar) May 11, 2018
Greetings! ASAN is here. For people who would like to learn more about us, check out our About Us page: https://t.co/aMoJLSyd3z #autinsar
— autselfadvocacy (@autselfadvocacy) May 11, 2018
Hi! We run a weekly Twitter chat for autistic and similarly neurodivergent people on a variety of topics – #autchat. We’ve been running for 3 years.
Co-mods @theoriesofminds and @endeverstar will also be posting some from their personal accounts. #AutINSAR #INSAR2018
— #autchat mod (@autchatmod) May 11, 2018
CRAE are here and ready for more great discussions (as per last year!) #AutINSAR
— CRAE (@CRAE_IOE) May 11, 2018
I’m Emily, moderator for AWN, co-editor of “What Every Autistic Girl Wishes Her Parents Knew” anthology, and co-editor of We Are Like Your Child! #AutINSAR
— Emily Paige Ballou (@epballou) May 11, 2018
Hi, I’m Carol @Aspieadvocate a co-editor at @thinkingautism Thinking Person’s Guide to Autism. #AutINSAR
— Carol Greenburg (@Aspieadvocate) May 11, 2018
Hi all! I’m Elizabeth, one of the #autchat mods. I’m a writer and autistic advocate. I recently edited an anthology by adult-diagnosed autistic people that will be out later this year from ASAN. #AutINSAR
— theories of minds (@theoriesofminds) May 11, 2018
Hi #AutINSAR! I’m Meryl Alper, an Assistant Professor at Northeastern University in Boston, studying the everyday media & technology practices of autistic youth and their families, as well as non-speaking kids with developmental disabilities.
— Meryl Alper (@merylalper) May 11, 2018
Hi! I’m Sara. I’m #ActuallyAutistic and run @NOSeditorial. I also freelance and I’ve been published in @thinkingautism and @Spectrum, among other outlets. #autINSAR
— Sara Luterman (@slooterman) May 11, 2018
Hello! I’m Jack and am #ActuallyAutistic. I have quite a wide portfolio of roles, but a few are in my bio to get an idea. #AutINSAR
— Jack Welch (@MrJW18) May 11, 2018
Andy, here, I research physical activity and motor skills across the lifespan at @UNT_KHPR and @untautismcenter #AutINSAR
— Andy Colombo-Dougovito (@amcdphd) May 11, 2018
Maxfield Sparrow here, representing We Are Like Your Child, a collective of writers who discuss the challenges and solutions of our Autistic lives. #AutINSAR
— We Are Like Your Child (@wearelikeyrkid) May 11, 2018
Hi, I’m Ryan, i’m #ActuallyAutistic and the Press Officer for @AutisticUK . I’m the irish fellow who tweets far too much #AutINSAR
— Ryan Hendry (@RyanHendry94) May 11, 2018
He’s also our resident complainer #AutINSAR
— Autistic UK (@AutisticUK) May 11, 2018
Hi all – looking forward to #AutINSAR! I’m a geographer in the environmental sciences who currently self-identifies as somewhere between having many autistic traits and being formally diagnosable. Occasional participant in #autchat.
— S Hydrae (@shydrae) May 11, 2018
Hi am Chris Connor, autistic, non-binary and social housing tenant. Interested in housing and homelessness issues in autistic community. #autinsar
— Chris Connor (@ChiDeltaWithNOR) May 11, 2018
Hi all! I’m Viv, founder and director of @CanadianAut. Chinese autistic living on unceded Coast Salish territories. Also a neuroscience student at @SFU! Participating during my morning commute on the train today. #AutINSAR
— Vivian Ly (@viv__ly) May 11, 2018
I’m @gperezliz, early career autism researcher at @Drexelautism and mother of a child on the spectrum. Strong interest in early detection & supporting families to become strong advocates #AutINSAR #INSAR2018
— Georgina Pérez Liz (@gperezliz) May 11, 2018
Forgot to introduce myself! 🤭
I’m Sarah an autistic student (most of the time), disability activist (some of the time) and very interested in autism research (all of the time) #AutINSAR
— aut sarah (@Sarahmarieob) May 11, 2018
Hi, #autinsar. I’m an occasional #AutChat participant. I was diagnosed in my 20’s.
— Jacob Sanders (@Tribble314) May 11, 2018
Hi all! I’m Lily, early career researcher looking at outcomes for autistic people, particularly related to social camouflaging and its impact on mental health and wellbeing/quality of life. I also coordinate an NHS autism assessment clinic for 5-13 year olds in the UK. #AutINSAR
— Lily Levy (@lilyhannahlevy) May 11, 2018
Got so distracted/excited here in person at #AutINSAR that I forgot to say:”Hi, my name is Josie, I’m interested in physical activity, health outcomes and first experiences of the autistic community.” Loving this convo.
— Josie Blagrave (@blagraveaj) May 11, 2018
Q1: What should be the top three priorities for autism research?
Following from beside my poster! #AutINSAR https://t.co/2E2B4dJV1T
— Dr. Melanie Penner (@drmelpenner) May 11, 2018
Q1: What should be the top three priorities for autism research? #AutINSAR #INSAR2018
— Thinking Person’s Guide To Autism (@thinkingautism) May 11, 2018
Q1 – The top three research priorities should be decided by autistic people themselves. For too long, non-autistic researchers have been setting the agenda. This needs to change #autinsar
— Laura Crane (@LauraMayCrane) May 11, 2018
A1 Research into needs of autistic adults, research on best practices in services & supports, and research to improve access to communication, are all critically important and severely underfunded. They can all make a difference in the daily lives of autistic folks. #AutINSAR https://t.co/8i3pOdUF1o
— autselfadvocacy (@autselfadvocacy) May 11, 2018
Q1 – I like this paper by @liz_pellicano and @TonyASDorAFC (@CRAE_IOE) on what autism research should focus on, from the perspectives of the autistic and broader autism communities, in @journalautism : https://t.co/zgP6SsWEfp#AutINSAR
— Laura Crane (@LauraMayCrane) May 11, 2018
a1 personally i’d pick aac, gender variance, and co-occuring psychiatric conditions/treatment (including a focus on eating disorders and other apparently high-prevalence conditions in our population) #autinsar
— ⚡️ homo qui vixit ⚡️ (@endeverstar) May 11, 2018
a1 but those are sort of just my babies 😀
probably to meet a wide range of people’s needs better the three should be aac, increased options for meeting adults’ support needs (like daily living skills etc), and more about the effects of masking including burnout #autinsar
— ⚡️ homo qui vixit ⚡️ (@endeverstar) May 11, 2018
A1: robust evidence to test the predictions of neurodiversity theories.
e.g there’s fab emergent evidence from psychology, supporting double empathy problem and I think this strengthens the autistic rights movement (as well as challenging older theories)
— Sue Fletcher-Watson (@SueReviews) May 11, 2018
A1. Of course agree with Sue regarding the double empathy problem (unsurprisingly) and other theories that need looking into like monotropism and ecological theories of self/experience. Other stuff – soundscaping design/tech eh @theblub? Also peer support, social well-being.
— Damian Milton (@milton_damian) May 11, 2018
A2: This. Until research is informed by valid theoretical models, the risk is that it will be built on a bed of sand, directionless. (see Nick Chown). This lack also informs the disconnect b/n researchers and the #ActuallyAutistic and b/n researchers and autism itself. #AutINSAR
— Autvntg (@autvntg) May 11, 2018
A1:
How to undo side effects of passing/masking autistic traits
Effective treatments for sensory sensitivities
How to convey our experiences in ways that neurotypical people will understand and believe#AutINSAR #INSAR2018
— #autchat mod (@autchatmod) May 11, 2018
A1 What does autism look like in adults across the lifespan? How can we best support every autistic person to access effective communication? ***What does the autistic community identify as priorities for research, and how can we meet those needs in true partnership?*** #AutINSAR
— Julia Bascom (@JustStimming) May 11, 2018
A1: More research on community supports for adults, race & autism, and accessible communication #AutINSAR #INSAR2018
— Autistic Women & Nonbinary Network (@awnnetwork_) May 11, 2018
A1. Top 3 research priorities –
(i) mental health @LauraMayCrane
(ii) employment @annaremington
(iii) lifelong learning
As a rule: research must involve autistic ppl #AutINSAR
— CRAE (@CRAE_IOE) May 11, 2018
A1; in no particular order; access to healthcare, quality of life, and improved communication tools/methods #AutINSAR
— Ryan Hendry (@RyanHendry94) May 11, 2018
A1: another priority for me would be how to create facilitative learning environments for autistic kids
I think our best chance here is to work out how self-taught autistic people have acquired skills and see if we can replicate this to achieve curriculum goals. #AutINSAR
— Sue Fletcher-Watson (@SueReviews) May 11, 2018
…We #ActuallyAutistic people have used self-teaching techniques we have designed for our individual needs as an authentically self-designed accommodation. My, perhaps entirely visceral, reaction to your comment is #Ifitain‘tbrokedon’tfixit #AutImfar https://t.co/o4SsNRobs6
— Carol Greenburg (@Aspieadvocate) May 11, 2018
Yes, though I think educational environments could do a much better job at LETTING us do that. Many of the worst times of my childhood & education were simply not being *allowed* to self-accommodate. #AutINSAR
— Emily Paige Ballou (@epballou) May 11, 2018
e.g. more immersive learning opportunities and less fractionation of learning into discrete components?#AutINSAR
— Sue Fletcher-Watson (@SueReviews) May 11, 2018
check out The Swimming Pool theory (the edge of the swimming pool = how I learn). I have to do many specific examples, rather than learn a “concept” abstractly on its own. It doesn’t make sense if it’s completely abstract.https://t.co/9Y9SW0PBWJ#AutINSAR #INSAR2018
— AutisticScienceLady (@AspieHuman) May 12, 2018
A1: supports throughout the lifespan, so not only childhood, but also teen, young adult, students, older adults, and seniors. Mental health, poverty. All the intersections that fit into those #autinsar
— Corina Lynn Becker (@CorinaBecker) May 11, 2018
A1
– autism across the lifespan research
– diagnostic/ identification methods to reflect developing understanding of autism
– focus on learning disability and the co-occurrences of other conditions with autism#AutINSAR https://t.co/8umR56lqRZ
— aut sarah (@Sarahmarieob) May 11, 2018
A1: reduction of mortality rates, independent and supported living, and housing options. #AutINSAR
— Chris Connor (@ChiDeltaWithNOR) May 11, 2018
A1: top research priorities: anything that helps Autistics better access healthcare, housing, employment, and other life necessities. Anything that directly improves quality of life. #AutINSAR
— We Are Like Your Child (@wearelikeyrkid) May 11, 2018
#AutINSAR #INSAR2018 a1 What happens in the UK when autistic people ask for help with mental health problems. There seems to be a problem in places of people being turned away because they are autistic.
— Liz (@Lizreally10) May 11, 2018
For me, it would be:
1. Inequalities in healthcare
2. Societal attitudes and generational changes over years
3. Mental health – but for those who are not/limited in verbal communication and over 25#AutINSAR #INSAR2018 https://t.co/cjAXjK5FkU
— Jack Welch (@MrJW18) May 11, 2018
#AutINSAR A1: Reducing autistic mortality in adolescence and middle age, assisting autistic people in higher ed and employment, investigating the long term consequences of ABA and its variants.
— Douglas Bass (@douglasbass) May 11, 2018
A1 I’ll pick mental health issues at all ages, understanding autism across the entire lifespan, and understanding how autism interacts with culture. #AutINSAR
— S Hydrae (@shydrae) May 11, 2018
#AutINSAR A1 @DrLaurenBF has an #INSAR2018 paper on the subject of autistic mortality that might help.
— Douglas Bass (@douglasbass) May 11, 2018
A1 communication support, autistic friendly in home & community supports/service equities and employment equities #INSAR2018 #AutINSAR
— AutisticNotSilent (@AutismDogGirl) May 11, 2018
A1: – perception of autism in different countries / regions
– perception of autistic women in various countries and it’s influence on their camouflage
– autism and discrimination#AutINSAR #INSAR2018
— Zaan Tucker (@zaan_tucker) May 11, 2018
A1: Ah! #AutINSAR chat just started. I’m going to quote-tweet any questions I answer, because it does my head in when people just post ‘A1:’ (or, worse, ‘Q1:’) with no easy way to find what they’re answering.
Oh yeah, top research priorities.
(1) Anxiety
(2) Sleep
(3) Loneliness https://t.co/CNoFPGmU6u
— Oolong (@MxOolong) May 11, 2018
A1 Top 3 research priorities:
– improving access to services & supports across the lifespan, across different marginalized identities
– finding what the autistic community defines as helpful/unhelpful supports
– investigating the trauma & long-term effects of ableism#AutINSAR
— Vivian Ly (@viv__ly) May 11, 2018
A1 communication supports, employment and independent living supports no institutions! #AutINSAR #INSAR2018
— MultiplyAutistic (@MultplyAutistic) May 11, 2018
Belated A1: focus on autistic parents & parenting. Many reasons, including reliance on parent-child play as a measure used in research. We need a sense of how autistic parents play with their children so we can adjust our normative views of “correct” forms of play. #AutINSAR
— Sue Fletcher-Watson (@SueReviews) May 11, 2018
A1- I’d like to see some research into AAC and Autism. #AutINSAR #INSAR2018
— iRoam (@Roamites) May 11, 2018
Q1
Mental health – with good MH your potentially capable of doing whatever you wish & better at coping with the NT world around you
Sleep in autism – reasons as above
Early mortality – because we want to & should be here (mostly)#AutINSAR #insar2018
— jon adams (@soundcube) May 11, 2018
A1:
+ Support systems for autistic adults struggling with independence
+ Skill loss and difficulties learning new skills in autistic adults
+ Connection between autism and difficulty driving/operating machinery
Basically anything re: autism in adults#AutINSAR
— Shepard Fairfax 🦖⛤⚧ (@therifax) May 11, 2018
Ooh, yes – I would love to see the topic of driving, and its intersections with sensory processing and motor control, discussed in autism research. One of those life skills that can be limiting in unexpected ways if you can’t do it as an adult. #AutINSAR https://t.co/b6gQXGBHjO
— codeman38 (@codeman38) May 11, 2018
Definitely I agree because driving needs to be researched more for those Autistics that can or cannot. #AutINSAR
— Jason Ross (@theamazinj) May 11, 2018
A1: Top three priorities for research, in my opinion:
1) sensory overload and modulation
2) autistic health (as in physical health like GI issues as well as mental health like high rate of suicides)
3) low rates of diagnosis for women, people of color, trans folx#AutINSAR
— Megan Lambert (@negamlambert) May 11, 2018
#AutINSAR A1: Equality, Equality, Equality (This applies to all facets of anything. Mental health. Quality of life. Employment. Etc.) https://t.co/g5Hm06dOQ6
— #Thinker (@tb_thinker) May 11, 2018
[cn:abuse,sa] I want to see research on long-term effects of compliance-based training on autistic children. Does it make it harder for us to escape abuse later in life? What about sexual consent? Can we say no when we should, or when we want to?#AutINSAR #INSAR2018 https://t.co/vbEBLxbNU8
— Solveig ⚧ – Autistic Acceptance Worldwide (@autisticb4mmr) May 12, 2018
@autisticb4mmr is spot on. Compliance training = training #autistic children to ignore their instincts & obey authoritative instruction. It trains vulnerable people to be compliant prey to any predator. Horrible & frightening
— Cos (@autismage) May 12, 2018
I would love there to be more study on autistic culture, done by autistic people. Actually, I want to go back to school and study this very thing myself. If you have ideas, please @ me. REALLY. Please @ me.#autINSAR #INSAR2018
— Solveig ⚧ – Autistic Acceptance Worldwide (@autisticb4mmr) May 12, 2018
By the way, I think the way autistic people experience (or do not experience) romantic and/or sexual attraction is important. Especially looking at non-allocisheteronormative situations. #autINSAR #INSAR2018
— Solveig ⚧ – Autistic Acceptance Worldwide (@autisticb4mmr) May 12, 2018
And we must consider how being on housing subidies and/or other social security benefits can impact how disabled people can navigate relationships. Because the state can and will dictate how we’re allowed to be in close relationships.#autINSAR #INSAR2018 A1
— Solveig ⚧ – Autistic Acceptance Worldwide (@autisticb4mmr) May 12, 2018
A1:
-The autistic people are placed at the heart of the research.
-Research focuses on autism acceptance and improving QOL of life for autistic people, NOT cures, ABA or anything harmful.
-Increasing the number of autistic researchers in charge of autism research.#AutINSAR https://t.co/iVaEPJLzRn
— Subtle aka Haru’s Greatest Fanperson (@subtlykawaii) May 12, 2018
1. Communication options for autistic people.
2. Employment opportunities for autistic adults.
3. How schools can accommodate autistic students better—with input from autistic people themselves.
— Kris Young ✝️🏳️🌈♿️ (@AfroAutPunk) May 12, 2018
Burn out research, money to actually help struggling autistic people and not just because I am one, devices and technology for communication
— 🕷️Anansi Acolyte, Spider Demon Lord, Satanael🕷 (@chromesthesia) May 12, 2018
AAC for verbal and non verbal autistic people
Autistic Burnout
Mental health and adjustments for autistic people with mental health conditions
— Trish (@AutisticTubie) May 11, 2018
Q2: Which topics do #ActuallyAutistic people discuss that are missing from research conversations?
Q2: Which topics do #ActuallyAutistic people discuss that are missing from research conversations? #AutINSAR #INSAR2018
— Thinking Person’s Guide To Autism (@thinkingautism) May 11, 2018
A2 The disconnect starts with deciding what to research. Most research priorities center biomedical info, while the autistic community wants information that can be useful in our day to day lives. #AutINSAR https://t.co/mk5kxbhW9J
— autselfadvocacy (@autselfadvocacy) May 11, 2018
A2 Autism research is often normed off of 4 year old white, autistic boys. That means research is missing the experiences of the rest of the autistic community. #AutINSAR
— autselfadvocacy (@autselfadvocacy) May 11, 2018
a2 it seems like there’s still a gap between the amount we discuss sensory issues versus it showing up in research
same with masking/camouflaging/passing
and same with late diagnosis #autinsar
— ⚡️ homo qui vixit ⚡️ (@endeverstar) May 11, 2018
#AutINSAR A2; I think researchers don’t look enough at how their research will impact upon the people they are researching. I also think inclusion is still talked about as an add-on to the process, rather than a central plank.
— Ryan Hendry (@RyanHendry94) May 11, 2018
Q2: Feel slightly cheeky even answering this as an NT researcher, but get asked a lot by #actuallyautistic people why there is so little research on longitudinal outcomes and trajectories, wellbeig/QoL, peer support for those with autism and identity! #autINSAR
— Lily Levy (@lilyhannahlevy) May 11, 2018
Q2 – From conversations with autistic people, many appear to want more diversity and representation in autism research (e.g., beyond White, intellectually able, young people). #AutINSAR
— Laura Crane (@LauraMayCrane) May 11, 2018
A2: Yes I think intersectionality and autism is massively under-explored
and there’s an incredibly privileged, narrow cohort in the academic community, which exacerbates this problem. #AutINSAR https://t.co/Odmj814rgL
— Sue Fletcher-Watson (@SueReviews) May 11, 2018
A2: I’m not autistic so I guess I don’t know…
But I think the concept of “flow states” is barely being researched (and should be)
Also monotropism as a theoretical model#AutINSAR https://t.co/bLOta8gQ6C
— Sue Fletcher-Watson (@SueReviews) May 11, 2018
A2 Often topics related to our daily lives—especially as adults—are missing or under-researched. Practical things like navigating transportation or food prep. #AutINSAR #INSAR2018
— #autchat mod (@autchatmod) May 11, 2018
A2 So, my homework always took a lot longer to complete. This took time away from learning basic self care skills, like cooking and cleaning, and to some extent, hygeine.
Plus hours of cognitive therapy. But no time to be a kid. Can we talk about this?#autINSAR @INSAR2018 https://t.co/eCiaLmnGV1
— Solveig ⚧ – Autistic Acceptance Worldwide (@autisticb4mmr) May 12, 2018
A2 I think these often aren’t seen as “part of autism” but there’s no “autism” separate from being autistic in the contexts of our lives. #AutINSAR #INSAR2018 https://t.co/0rPNgiVAZa
— theories of minds (@theoriesofminds) May 11, 2018
#AutINSAR hmmmm, I think my A1 might work into A2…. supports across the lifespan that AREN’T ABA, poverty, and all the ways that intersectionality interacts with that, more with mental health https://t.co/eyC2vgSxCm
— Corina Lynn Becker (@CorinaBecker) May 11, 2018
A2 Oh god where to start. Challenges with daily living skills. Self-determination. Ways that autism orgs reinforce stigma. Privacy. Our similarities, and just how superficial things like oral speech or IQ are. Echolalia as meaningful communication. Burnout. (1/2) #AutINSAR
— Julia Bascom (@JustStimming) May 11, 2018
And elitism through conceptual terms such as the commonly espoused “meltdown”. #AutINSAR https://t.co/ah3vYLdUEa
— Gerry Bennison (@AlresfordBear) May 11, 2018
A2 Skill loss in adulthood. Surviving abuse. The violence and dehumanization inherent in many “gold-standard” therapies, congregate housing, sheltered work, etc. Functional value of stimming, intense interests, etc. Meaningful diagnostic criteria. Everything else. (2/2) #AutINSAR
— Julia Bascom (@JustStimming) May 11, 2018
As someone who is suffering intense skill loss in adulthood, I am curious how things like sensory overload, unpredictable schedules, autistic burnout, etc. contribute to this.
I would also love to find out if any of my lost skills will ever come back.#autINSAR #INSAR2018 A2 https://t.co/UGup3qr3uY
— Solveig ⚧ – Autistic Acceptance Worldwide (@autisticb4mmr) May 12, 2018
Wow that is a depressing tweet.
But seriously. While trying to balance all life’s demands, I am finding my abilities slipping away, and I don’t know what to do with that. How do we best address this issue? #autINSAR #INSAR2018
— Solveig ⚧ – Autistic Acceptance Worldwide (@autisticb4mmr) May 12, 2018
A2: Also, what autism really is, in ways that go beyond social communication disability. #AutINSAR https://t.co/2dRpvoTOst
— Emily Paige Ballou (@epballou) May 11, 2018
A2: #ActuallyAutistic folks spend a lot of time talk about all the issues that affect those of us who aren’t three year old caucasian boys (aka most of us). I’m heartened to see more diversity in research at #INSAR2018. There’s a lot of room to grow, though. #AutINSAR
— Sara Luterman (@slooterman) May 11, 2018
A2: REPRESENTATION matters….. in ALL aspects of research! #AutINSAR #INSAR2018 https://t.co/Vrw6ITPTbR
— Autistic Women & Nonbinary Network (@awnnetwork_) May 11, 2018
A2. Sensory issues are a *huge* aspect of autistic experience for myself and a lot of other people I’ve talked to, but this seem to often be ignored in research where it’s relevant. #AutINSAR #INSAR2018 https://t.co/5dmsa6cC6q
— codeman38 (@codeman38) May 11, 2018
A2: It was only from talking to autistic adults and autistic researchers that sensory issues became a major theme in my research on autistic kids and media use: https://t.co/P1qGxmz6gx https://t.co/44K51w9JP7 #AutINSAR
— Meryl Alper (@merylalper) May 11, 2018
A2: Experiences of having multiple disabilities, incl. multiple developmental/psychiatric disabilities, and interactional effects of those experiences. #AutINSAR https://t.co/2dRpvoTOst
— Emily Paige Ballou (@epballou) May 11, 2018
#AutINSAR also including chronic illnesses and pain management https://t.co/PFJB5YJA3m
— Corina Lynn Becker (@CorinaBecker) May 11, 2018
A2. Discuss mismatch between research that is conducted and what is wanted, disappointment in the research process, lack of follow-up info from researchers/studies, constantly disclosing very personal info#AutINSAR
— CRAE (@CRAE_IOE) May 11, 2018
A2: inertia. For decades we’ve been trying to figure out why it is so hard to change gears and what we can do to help ourselves and each other get “unstuck.” We could really use some help understanding and coping with not being able to do what we want to do. #AutINSAR
— We Are Like Your Child (@wearelikeyrkid) May 11, 2018
Oh heck, yes. I probably should have included this myself.
Relatedly, I think monotropism is by far the most promising explanation for autistic inertia, among other things, so… any research directly addressing that would be extremely welcome.#AutINSAR #INSAR2018 https://t.co/ikspm29u8W
— Oolong (@MxOolong) May 11, 2018
A2 Aging. cPTSD. EDS. #AutINSAR
— theories of minds (@theoriesofminds) May 11, 2018
A2: Samples not being representative- too white, too middle class, too male, no diversity and often too small.
Use of language, while @LorcanKenny & @CRAE_IOE have done great work we are still having PFL and IFL discussions.#AutINSAR https://t.co/u82yz6BqSJ
— aut sarah (@Sarahmarieob) May 11, 2018
A2(cont) also burnout and it’s links within so many parts of overt and covert behaviours. An autistic may know why it happens but we’re waiting for research to give anecdotes voice.#AutINSAR
— aut sarah (@Sarahmarieob) May 11, 2018
A2: social policy and outside of the clinical field areas of support. eg. housing, employment, homelessness. #autinsar
— Chris Connor (@ChiDeltaWithNOR) May 11, 2018
A2: Lived experiences of autistic adults esp. re: atypical developmental trajectories beyond childhood. #AutINSAR https://t.co/2dRpvoTOst
— Emily Paige Ballou (@epballou) May 11, 2018
#AutINSAR A2 To be fair, I believe researchers are getting around to it, but #ActuallyAutistic people talk a lot more about gender divergences than neurotypical people. I have no good reason why this should be so, but there it is.
— Douglas Bass (@douglasbass) May 11, 2018
A2. Past/current mistreatment by police, poor social care provision/ending up in residential homes at a young age, welfare sanctioning.
(Largely based upon issues in the UK especially)#AutINSAR #INSAR2018 https://t.co/erB1m7rLEk
— Jack Welch (@MrJW18) May 11, 2018
A2 #eyegaze for #AAC access for autistic! impact of executive functioning on daily life skills for autistic adults, in home supports so those of us with higher support needs can live independently and keep our rights #INSAR2018 #AutINSAR
— AutisticNotSilent (@AutismDogGirl) May 11, 2018
#Pi can’t say this enough #AaC! And #EyeGaze as an device #AAC access method for #ActuallyAustistic people! We need smaller more portable and highly accurate #EyeGazeAAC #AutINSAR #INSAR2018
— AutisticNotSilent (@AutismDogGirl) May 11, 2018
Q2 #ptsd in Autistic people#ptsd in Autistic people #ptsd in Autistic people #ptsd in Autistic people #ptsd in Autistic people#ptsd in Autistic people #ptsd in Autistic people #ptsd in Autistic people #AutINSAR
— jon adams (@soundcube) May 11, 2018
A2 Trying to understand autistic lived experience seems pretty absent from research conversations, especially among the molbiol crowd. #AutINSAR
— S Hydrae (@shydrae) May 11, 2018
A2: So much. Like… most autism research is so divorced from autistic experiences that even as someone generally fascinated by brains and science and what makes people tick, it’s just not that interesting to me.
I feel like gender, sexuality, depression are big ones.#AutINSAR https://t.co/91dpwYUpBO
— Oolong (@MxOolong) May 11, 2018
Sensory Processing Difficulties#AutINSAR#ActuallyAutistic #AutismAcceptance https://t.co/0VYtQpBKx1
— ^_^ (@meowcarriemeow) May 11, 2018
A2 Oh wow, there’s too many to count. More generally? Anything that impacts the day-to-day life of autistics, especially in adulthood & transition to adulthood /middle ages / senior ages#AutINSAR
— Vivian Ly (@viv__ly) May 11, 2018
A2 There needs to be more research into ABA and trauma/PTSD, there needs to be more people looking into the harms of #ABA #AutINSAR #INSAR2018
— MultiplyAutistic (@MultplyAutistic) May 11, 2018
A4 that one study that linked #ABA to OTSD? That? That was great! We need more of those! Like 15 or 20 please #AutINSAR #INSAR2018
— MultiplyAutistic (@MultplyAutistic) May 11, 2018
cosigned – and especially investigating the kinds of aba that AREN’T lovaas style discrete trial instruction, to see to what extent they are still harming us like dti
(it seems to me most conversation in the community is abt dti and i want more info abt other aba) #autinsar https://t.co/8fDl4GRjL3
— ⚡️ homo qui vixit ⚡️ (@endeverstar) May 11, 2018
A2:
– how to deal with neurotypical family members (parents, parents-in-law, spouse, etc) without playoing someone else
– how to negotiate with people
– how to talk to your physician
… and so on#AutINSAR #INSAR2018
— Zaan Tucker (@zaan_tucker) May 11, 2018
Communication supports for autistics #DID ( Dissociative Identity Disorder) and #Autism #PTSD and #Autism
Executive functioning issues are disabling as fuck and autism
— MultiplyAutistic (@MultplyAutistic) May 11, 2018
oh cosigned on DID too, there seems to be a significant overlap #autinsar https://t.co/qLwxY3NOsi
— ⚡️ homo qui vixit ⚡️ (@endeverstar) May 11, 2018
A2:
Sensory issues. Almost completely ignored by “professionals”.
Hyperempathy – experienced by many of us but also ignored for stereotypes.
The unique experiences of trans, bipoc, female, queer autistic people.#AutINSAR
— Megan Lambert (@negamlambert) May 11, 2018
A2 It would be very useful to have help for *reducing hyperempathy* to normal levels. It can be disabling in and of itself. Sometimes it can actually make it *harder* to help other people. #AutINSAR #INSAR2018 https://t.co/HSRWnJAvsj
— theories of minds (@theoriesofminds) May 11, 2018
#AutINSAR #INSAR2018 a2 Could there be research into which pattern of mental illness in a young person should lead a clinician to consider a diagnosis of autism. Maybe looking back at the MH history of very late diagnosed autistics.Could save a lot of suffering @LauraMayCrane
— Liz (@Lizreally10) May 11, 2018
A2:
Autism spectrum disorders in adulthood, in AFAB people, and the comorbidity with physical illness (particularly GI disorders) #AutINSAR
— Shepard Fairfax 🦖⛤⚧ (@therifax) May 11, 2018
#AutINSAR A2: The most prevalent I can think of is that the research community is too single-minded on cause, cure, and other treatments. Very few #ActuallyAutistic people are asking for a cure. https://t.co/NLRSMmLhYb
— #Thinker (@tb_thinker) May 11, 2018
The increase in cope that comes with eg headphones, stim toys, tinted glasses.
How to manage in general and find help with the things we can’t manage.
The impact of culture and media perceptions on our psyches and social prospects.#AutINSAR https://t.co/78iMLMmDK7
— That Mog One✨🧜♂️ (@MogTheConfessor) May 11, 2018
A2: Motherhood. EDS. Depression. (These are the things I discuss with myself.)
— Lowinchen (@lowinchen) May 11, 2018
Also adult diagnosis of autistic women. #AutINSAR
— Lowinchen (@lowinchen) May 11, 2018
A2: research on autistic burn-out would be very valuable. #INSAR2018 #AutINSAR @thinkingautism https://t.co/8R8psgqoEH
— Ruminate like a Dutch Aspie (@RuminateAspie) May 11, 2018
#AutINSAR Links between autistic shutdown/meltdown and possible epileptiform conditions. Seeing huge similarities in self reports.
— Ann Memmott (@AnnMemmott) May 11, 2018
Also missing from conference talks, but frequently discussed by autistics: abuse by parents. Most of my autistic friends were abused by their parents. Some still are.
— Tania Melnyczuk | AutisticStrategies.net (@ekverstania) May 11, 2018
part where you don’t blend as NT, still autistic as ever, and it’s all your fault – get kicked out of the house for “behaviors” and such the family never understood and always “othered” the child. These are so many autistic adults never supported. 🙁
— Eve Reiland (@BadassActivist) May 12, 2018
It is very hard for me to find research that is not clinical in nature, or otherwise focused on deficits. I keep saying, if all we focus on is deficits, all we will see are deficits.
I’m missing topics that aren’t stigmatizing and pathologizing. https://t.co/LNI1IoffND
— Solveig ⚧ – Autistic Acceptance Worldwide (@autisticb4mmr) May 12, 2018
Add in abuse by peers, which can sometimes be trivialized with standard conceptions of bullying, abuse by siblings, teachers…the list sometimes seems endless. #AutINSAR https://t.co/1R93AkWyXP
— Carol Greenburg (@Aspieadvocate) May 12, 2018
By the way, I would really love to explore the ways on how autistic children are heavily stigmatized for having autistic children, and the impact that has on the way they ultimately end up raising their children.#autINSAR #INSAR2018
— Solveig ⚧ – Autistic Acceptance Worldwide (@autisticb4mmr) May 12, 2018
[cn:abuse] So like… better understanding how bad professionals are able to convince parents to do abusive things to their children in the name of finding a cure, or whatever it is they’re trying to do. And why they’re so convincing. And how we stop that.#autINSAR #INSAR2018
— Solveig ⚧ – Autistic Acceptance Worldwide (@autisticb4mmr) May 12, 2018
Q2:
(cn: ABA, ableism, abuse)
-The effects on autistic people from abusive therapies like ABA and ableist rhetoric in society (including how comorbid issues develop)
-The effects of abuse by relatives (ie. autism parents).
-Autistic burnout.
-Sensory overload.#AutINSAR https://t.co/mI0R6jMlbh
— Subtle aka Haru’s Greatest Fanperson (@subtlykawaii) May 12, 2018
Q3: What kind of technology research do you think would most improve #ActuallyAutistic people’s lives?
Q3: What kind of technology research do you think would most improve #ActuallyAutistic people’s lives? #AutINSAR #INSAR2018
— Thinking Person’s Guide To Autism (@thinkingautism) May 11, 2018
A3: we’re working on a new way to conceptualise the role of tech in human-to-human interaction, to create shared meaning between people who are different from each other – e.g. because neurodiversity.
That would be cool… #AutINSAR
(with @theblub @cfrauenberger & co)
— Sue Fletcher-Watson (@SueReviews) May 11, 2018
A3: So many thoughts! Research that challenges the idea that autistic people in front of screens are “anti-social” (and that challenges what it means to be “social”); media/tech provide new ways to be intimate, share space & perspective #AutINSAR
— Meryl Alper (@merylalper) May 11, 2018
A3: Better design against noise pollution in cities and places of public accommodation. #AutINSAR https://t.co/1DPiteuOg5
— Emily Paige Ballou (@epballou) May 11, 2018
a3 aac, aac, aac
with options for people across the full spectrum of needs re communication supports
and we need aac tech that more easily integrates bilingual accents, aave, trans normed voices #autinsar
— ⚡️ homo qui vixit ⚡️ (@endeverstar) May 11, 2018
A3 – I know nothing about tech research, but I would guess it would have to be affordable and accessible (lots of tech I’ve seen here at #INSAR2018 has been very expensive!) #autinsar
— Laura Crane (@LauraMayCrane) May 11, 2018
#AutINSAR #INSAR2018 A3; I think communications technology has moved forward massively and it’s a huge area of potential.
Also, in an employment aspect, the ability to work from home may be a massive help to Autistic People who find some employment workplaces challenging. https://t.co/aduZNkSnls
— Ryan Hendry (@RyanHendry94) May 11, 2018
#autinsar #insar2018 I also think that smart home technology can show huge promise, in terms of helping with organisation and routine.
— Ryan Hendry (@RyanHendry94) May 11, 2018
A3: proper communication tools that work both ways to translate an NT person’s behaviour / speech into something an autistic person (perhaps with a learning disability) might find easier to decode. #AutINSAR
— Sue Fletcher-Watson (@SueReviews) May 11, 2018
A3: Technology research that cuts across disability categories. In my book Giving Voice, which was on AAC, I needed to study users more broadly to identify that families of non-autistic kid AAC users had harder time finding resources https://t.co/M9GabUEqQe #AutINSAR
— Meryl Alper (@merylalper) May 11, 2018
A3: I was really intrigued by @RosalindPicard‘s wearable tech this morning. I’d love a device that lets me know I’m feeling bad before I’m feeling Really Bad. It needs a user interface though. Not just an interface for caregivers. #AutINSAR
— Sara Luterman (@slooterman) May 11, 2018
#AutINSAR A3 Hear, hear! Recalling HAL saying “There is stress in your voice, Dr. Chandra. Is something wrong?” https://t.co/E4W5R4C7u1
— Douglas Bass (@douglasbass) May 11, 2018
#AutINSAR that did look (from what I could see via twitter) very interesting. I’d love to see applications for it to be applied to, oh, migraines or seizures, if it could https://t.co/AapjnKpvbd
— Corina Lynn Becker (@CorinaBecker) May 11, 2018
A3 AAC! And tech that helps with daily living skills, navigation, and decision making. Also movement differences–is there tech that could help people start moving after we get stuck? Tech that can help us regulate sensory and motor stuff? #AutINSAR
— Julia Bascom (@JustStimming) May 11, 2018
A3: I’d like to see technology research that’s about bridging the gap between autistic and allistic people not just focusing on adapting the #ActuallyAutistic for an allistic world. #AutINSAR https://t.co/JVgFRubJlY https://t.co/6bLjOkVWBG
— Bix’s Mediocre Life (@bixmediocre) May 11, 2018
A3: ways to cope with how loud and bright the world is, facial recognition glasses to help with faceblindness, something like a Fitbit that alerts us to emotions like anxiety to help with alexithymia, apps to help manage life. #AutINSAR
— We Are Like Your Child (@wearelikeyrkid) May 11, 2018
#AutINSAR A3 Something that knew the physiological markers of stress or a meltdown, and offered de-escalation strategies. https://t.co/JAKvOIO3So
— Douglas Bass (@douglasbass) May 11, 2018
A3: Ones with #ActuallyAutistic design input has ones of late look like that lack that design input. #AutINSAR
— Chris Connor (@ChiDeltaWithNOR) May 11, 2018
A3: Research that focuses on the long tail of which technologies become useful in what contexts, and how autistic people (across age, class, race, gender, etc.) make technologies useful in ways that can be unexpected to NT researchers like me #AutINSAR
— Meryl Alper (@merylalper) May 11, 2018
A3. Definitely one for autistic ppl to answer! Ancedotally have heard from practitioners and autistic ppl – naf interfaces, too expensive, on closed systems/not readily available #AutINSAR
— CRAE (@CRAE_IOE) May 11, 2018
A3 Tech that supports understanding social interactions in ways that help meet the goals of autistic users (rather than normalization goals). #AutINSAR #INSAR2018
— theories of minds (@theoriesofminds) May 11, 2018
A3 also wearable #AAC and better Bluetooth speakers and #aAC and tech that can go in the ocean for 4 hours and survive! We want #Communication everywhere! #AutINSAR
— AutisticNotSilent (@AutismDogGirl) May 11, 2018
Q3
A wearable that will warn me when someone I’m with is likely to get aggressive or harm me
not one that warns me that I’m about to get aggressive or harm someone else ( like I would 🙁 ) #AutINSAR
— jon adams (@soundcube) May 11, 2018
A3: We still need more research into how autistic people use technology to communicate, and how best to facilitate this. What works best for online peer support, and so on.
Also: stimtoy research! So many sparklies ruined by excessive flashing. Much more to discover…#AutINSAR https://t.co/BdoGCBJS0d
— Oolong (@MxOolong) May 11, 2018
A3. On a basic level, I think anything that helps to allay stress/anxiety and a digital compliment for stim toys. Plenty of potential to build creative apps around this!#AutINSAR #INSAR2018 https://t.co/vC63Xe7vKN
— Jack Welch (@MrJW18) May 11, 2018
A3 Research on tech: AAC for sure! Also any tech that would help with self-regulation re: sensory sensitivies, inertia, burnout. A big no on any tracking technology–invasive of privacy and autonomy. #AutINSAR
— Vivian Ly (@viv_ly_mw) May 11, 2018
A3 integration of assistive technology with physical support. Not limited to communication, executive function planning and working with support workers.#AutINSAR https://t.co/bWeKgvn19u
— aut sarah (@Sarahmarieob) May 11, 2018
A3:
Research into better and cheaper AAC (augmentative and alternative communication).
Not interested in a cure for being autistic, but technology that could help with sensory pain would be much appreciated. It’s unbearable.
LESS “teach autistics empathy” tech.#AutINSAR
— Megan Lambert (@negamlambert) May 11, 2018
A3:
Sign language and AAC. Full stop. Nonverbal communication options are key, even for verbal autistics #AutINSAR
— Shepard Fairfax 🦖⛤⚧ (@therifax) May 11, 2018
“even for verbal autistics” thank you <3 #AutINSAR https://t.co/Gl3kOS595B
— ⚡️ homo qui vixit ⚡️ (@endeverstar) May 11, 2018
#AutINSAR A3: Any kind of assistive tech. (Maybe they can discover a way to track misfires in the brain that would indicate an #ActuallyAutistic person is starting to get overloaded and maybe close to meltdown?) https://t.co/Hej2Vv0eti
— #Thinker (@tb_thinker) May 11, 2018
A3: Because I get in my head so much I forget to eat or correct my posture, don’t realise when I’m stressed, tired, dehydrated.
Some kind of wearable that could detect some of those things and let me know what I need to do would be rad.#AutINSAR https://t.co/JpKiN0N9E4
— That Mog One✨🧜♂️ (@MogTheConfessor) May 11, 2018
A3 co stimming and lining up things as valid social stuff #AutINSAR
— AutisticNotSilent (@AutismDogGirl) May 11, 2018
A3 something that would help with executive dysfunction by helping to break down tasks into smaller steps somehow and then give prompts #AutINSAR
— borderline heterophobic (@torako_tiger) May 11, 2018
I *NEED NEED NEED* there to be better understanding that for many autistic people, having our cell phones out HELPS US pay attention, and doesn’t hurt us.#autINSAR #INSAR2018 A3 https://t.co/mEBaxO83Rp
— Solveig ⚧ – Autistic Acceptance Worldwide (@autisticb4mmr) May 12, 2018
Also I really would like to see a better understanding how AAC apps can benefit autistic people better communicate independently.
But also, we should probably look at how we can get these devices into our hands even without a speech pathologist’s directive. #autINSAR #INSAR2018
— Solveig ⚧ – Autistic Acceptance Worldwide (@autisticb4mmr) May 12, 2018
Q4: What are examples of existing autism research that look promising for helping #ActuallyAutistic people?
Q4: What are examples of existing autism research that look promising for helping #actuallyautistic people? #AutINSAR #INSAR2018
— Thinking Person’s Guide To Autism (@thinkingautism) May 11, 2018
Oh, I guess this fits better in Q4. #AutINSAR https://t.co/nbIlG78kQD
— Jacob Sanders (@Tribble314) May 11, 2018
A4: defo @Noahsasson ‘s work on how disclosure of diagnosis changes other people’s impressions. Clear evidence for how NT people create a hostile environment for autistic ppl, and signs of how to change that too. #AutINSAR https://t.co/hrV8PjZtzb
— Sue Fletcher-Watson (@SueReviews) May 11, 2018
A4: Add to that work of Liz Sheppard and @Brett_Heasman #AutINSAR https://t.co/v8QwyKIFdu
— Damian Milton (@milton_damian) May 11, 2018
a4 i’m hoping the initial prevalence studies on gender variance in autistic people will (hopefully sooner rather than later) lead to more competent support services, mh care, and access to medical transition #autinsar
— ⚡️ homo qui vixit ⚡️ (@endeverstar) May 11, 2018
A4: Maria Brinker & Elizabeth Torres’s research on the informational feedback we get from movement, and how that may impact on things like motor skills & communication. #AutINSAR https://t.co/ierpvOrKvz
— Emily Paige Ballou (@epballou) May 11, 2018
A4: kind of a grim answer, but the thin slice studies on likability. We are never going to get past social stigma and marginalization until we figure out visceral responses to us and how to best educate NTs out of those negative responses. #AutINSAR
— We Are Like Your Child (@wearelikeyrkid) May 11, 2018
A4 – At #INSAR2018, I’ve been impressed by @Sarah_NottsUni‘s work, looking at developing screening tools for suicidality in autistic people. So important (and, rightly, is underpinned by a strong participatory ethos). #autinsar
— Laura Crane (@LauraMayCrane) May 11, 2018
Q4
Suicide & mental health in #autistic people
Vital in the #autistic community this becomes wider and policy written for MH services#AutINSAR
— jon adams (@soundcube) May 11, 2018
A4: there are some great SIGs here on suicidality, sex & romance etc. There is a build up of interest in these areas – and people using participatory of community-informed methods. It’ll just take the academy a while to produce the stuff the community needs!#AutINSAR https://t.co/hrV8PjZtzb
— Sue Fletcher-Watson (@SueReviews) May 11, 2018
A4: There’s been some really incredible work presented on quality of life and improving outcomes from Newcastle, all the work on gender differences and the female autism phenotype… and it might be distressing, but the work on autism and bullying and suicidality. #AutINSAR
— Lily Levy (@lilyhannahlevy) May 11, 2018
A4: a UK study on possible links to autism in street homelessness pop. Its got potential for more studies ideally with housing academia. #AutINSAR
— Chris Connor (@ChiDeltaWithNOR) May 11, 2018
A4 #autinsar #INSAR2018 not a bit of research as such, but @AutisticaUK ‘s plans to ensure that Autistic People and Researchers are brought together is a great blueprint for how all research should be done. https://t.co/awItXl5IrH
— Ryan Hendry (@RyanHendry94) May 11, 2018
A4: I love @MHAutism‘s research. Finally, researchers are looking into WHY autistic people are more likely to attempt or commit suicide. As an #ActuallyAutistic suicide survivor, this is so needed.m I hope it leads to fewer people going through what I went through. #AutINSAR
— Sara Luterman (@slooterman) May 11, 2018
A4. Have to highlight *co-produced* research from CRAE’s @LauraMayCrane & @MrJW18 @mindtheflap @FernRaineach @AmbitiousAutism on #mentalhealth in young #autisitc ppl in UK. Results highlight HUGE need for change but evidence was so sorely needed #AutINSAR https://t.co/bnhmNaZ7OA
— CRAE (@CRAE_IOE) May 11, 2018
#autinsar Q4: it’s frustrating w/o being there, but the starting to address mental health and gender is encouraging.
— Corina Lynn Becker (@CorinaBecker) May 11, 2018
A4 We’re glad to see more research into suicidality (including its relationship to passing/masking), and into gender diversity. #AutINSAR #INSAR2018
— #autchat mod (@autchatmod) May 11, 2018
A:4 Research where #ActuallyAutistic ppl are writing the questions & playing a pivotal role in the entire study! Sensory considerations must be a rule and not exception! #AutINSAR https://t.co/yb65nq3RAi
— Autistic Women & Nonbinary Network (@awnnetwork_) May 11, 2018
#AutINSAR live twitter discussion rolling at full speed pic.twitter.com/is1gNq7EQl
— jelle van dijk 🌍 (@theblub) May 11, 2018
A4: It’s been great to see @AutisticaUK getting its institutional teeth into questions around sleep, depression, anxiety and so on.
Research relating to the double empathy problem (@Brett_Heasman‘s for example) and what to do about it: why do people misread autistics?#AutINSAR https://t.co/VplMxunviW
— Oolong (@MxOolong) May 11, 2018
A4 Researchers looking into sensorimotor aspects of autism. Elizabeth Torres’ work is great. From a theoretical perspective Hanne de Jaeger is really insightful. #AutINSAR
— S Hydrae (@shydrae) May 11, 2018
#AutINSAR A4 Specifically, the @AutisticaUK Suicidality in Autism Summit. It would be nice if there was one of these in the US. https://t.co/B2NyDkDuBK
— Douglas Bass (@douglasbass) May 11, 2018
A4 Heartened to see research on mental health & suicide, masking, eating disorders, sleep, thin slice judgments, & gender. #AutINSAR
— Vivian Ly (@viv_ly_mw) May 11, 2018
A4. The #KnowYourNormal campaign produced a toolkit, alongside research with @CRAE_IOE, to find practical ways of supporting young #autistic people https://t.co/JiIxX7hZuI. #AutINSAR #INSAR2018 https://t.co/UrqtOhAUcN
— Jack Welch (@MrJW18) May 11, 2018
A4 Aut specific mental health treatments rather than generic treatments and through that wider understanding of autistic difference & needs.
Work around stigma, employment and disclosure & how to improve outcomes in these situations#AutINSAR https://t.co/50By8Hfm9m
— aut sarah (@Sarahmarieob) May 11, 2018
A4: I haven’t really seen very much research that I’m actually interested in. Most of it, despite possibly good intentions, are deeply ableist.
Most research I have found that is good is not tech-related, but things like anthologies, or studies on our mental health. #AutINSAR
— Megan Lambert (@negamlambert) May 11, 2018
A4:
I’m not well versed in research but I heard about someone getting into online/virtual coaching for ASD/ADHD adults that sounds like a dream.#AutINSAR
— Shepard Fairfax 🦖⛤⚧ (@therifax) May 11, 2018
Q5: Which co-occurring conditions need more research attention, and why?
Q5: Which co-occurring conditions need more research attention, and why? #AutINSAR #INSAR2018
— Thinking Person’s Guide To Autism (@thinkingautism) May 11, 2018
A5; #AutINSAR #INSAR2018 Learning Disabilities, epilepsy and ADHD, for me.
We also need to focus on how we include folks who are Autistic and also have a learning disability, into events like #INSAR2018 https://t.co/c1N1xAcvVJ
— Ryan Hendry (@RyanHendry94) May 11, 2018
A5. Depression (glad to see some research on it was being presented today!). Auditory / sensory processing disorder. #AutINSAR #INSAR2018 https://t.co/9YRfRxUvFA
— codeman38 (@codeman38) May 11, 2018
a5 eating disorders please! and ptsd including caused by aba and institutionalization etc #autinsar
— ⚡️ homo qui vixit ⚡️ (@endeverstar) May 11, 2018
a5 eating disorders please! and ptsd including caused by aba and institutionalization etc #autinsar
— ⚡️ homo qui vixit ⚡️ (@endeverstar) May 11, 2018
A5: PTSD. Give me one good reason why not? #AutINSAR
— Damian Milton (@milton_damian) May 11, 2018
Q5: ADHD, because everyone tells me that I can’t be autistic and ADHD even though I’ve yet to see in the DSM this to be true; also, ALL THE EXECUTIVE FUNCTIONING I mean, what’s executive functioning????? #autinsar #INSAR2018
— Corina Lynn Becker (@CorinaBecker) May 11, 2018
A5: Comorbid conds needing more research? Ehlers-Danlos. Intestinal conditions and sensory sensitivities that might impact in eating and eating disorders. Dyspraxia/DCD in women as a placeholder for an actual autism diagnosis. All mental health problems. ALL OF THEM. #AutINSAR
— Lily Levy (@lilyhannahlevy) May 11, 2018
A5: Epliepsy as if am correct its that the co-occuring condition that creates the biggest impact on life expectancy to date? #AutINSAR
— Chris Connor (@ChiDeltaWithNOR) May 11, 2018
Q5
Epilepsy as it harms us
Poor Mental health as it harms us
PTSD as it harms us
Anything that harms us #autINSAR
— jon adams (@soundcube) May 11, 2018
A5: anxiety/depression- as they may look different, but are as important as in any other group (and across all ages!) #AutINSAR #INSAR2018
— Georgina Pérez Liz (@gperezliz) May 11, 2018
A5: cPTSD. It’s incredibly common, and disabling. Connective tissue disorders—common and underresearched, and being autistic makes negotiating with doctors for support harder. Sensory and auditory processing disorders, and effective treatments. #AutINSAR #INSAR2018
— #autchat mod (@autchatmod) May 11, 2018
YES.
(‘Q5: Which co-occuring conditions need more research attention, and why?’ #AutINSAR #INSAR2018) https://t.co/YfLEr8mJmV
— Oolong (@MxOolong) May 11, 2018
A5: PTSD as a direct result from ABA and eating disorders. #AutINSAR #INSAR2018 https://t.co/MEI6nIUyes
— Autistic Women & Nonbinary Network (@awnnetwork_) May 11, 2018
A5: Ehlers-Danlos is super overlooked. @Shannon_Haworth wrote a great piece for NOSmag about the topic. https://t.co/jhJb4PlIED #AutINSAR
— Sara Luterman (@slooterman) May 11, 2018
#AutINSAR A5 Many of my #ActuallyAutistic tweeps talk about Ehlers-Danlos Syndrome. I never hear it spoken of in the neurotypical part of my world. https://t.co/svZjUhKq3x
— Douglas Bass (@douglasbass) May 11, 2018
A5: Pregnancy. There is so little information or support for what kinds of issues autistic people uniquely may face when pregnant, including sensory issues but also communication with healthcare, social services providers. #AutINSAR https://t.co/zTx05srwvW
— Emily Paige Ballou (@epballou) May 11, 2018
Pregnancy. #AutINSAR #INSAR2018 https://t.co/LciZUlH01W
— Rabbi Ruti Regan 🏳️🌈♀🇺🇸 (@RutiRegan) May 11, 2018
Pregnancy & beyond on so many levels. Depression & anxiety during, not just post-pregnancy. Reframing postpartum depression and panic disorder in #ActuallyAutistic mothers as cascading meltdowns exacerbated by rapid hormonal shifts? Could be what happened 2 me. #AutINSAR https://t.co/zgOE63baWo
— Carol Greenburg (@Aspieadvocate) May 12, 2018
and the rest of gynecological care
— Zaan Tucker (@zaan_tucker) May 11, 2018
In regards to autistic mothers and pregnancy/ birth care (2 screenshots with questions and concerns) pic.twitter.com/b7eTVQjcRz
— Hilary Krzywkowski (@Sardonixxx) May 11, 2018
A5. (joining #AutINSAR late) I hear lots of people expressing concern about anxiety in ASD, so would like to see more research attention there.
— Chris Gunter (@girlscientist) May 11, 2018
A5: learning disability.
Specifically, we need to work out how to include the voices of people with LD in research and practice. If we want to support them to live their life, we need to know what is important to them on an individual level. #AutINSAR https://t.co/2iY3VkHI6c
— Sue Fletcher-Watson (@SueReviews) May 11, 2018
Q5: circadian rhythm disorders, PTSD and C-PTSD, seizure disorders, digestive distress, EDS and hypermobility, depression and anxiety #AutINSAR
— We Are Like Your Child (@wearelikeyrkid) May 11, 2018
YES SLEEP A MILLION TIMES #AutINSAR https://t.co/xFDnxYXVaJ
— Lily Levy (@lilyhannahlevy) May 11, 2018
clarification: learning disabilities in the uk are what we call intellectual disabilities in n. america, yes? so what do you call what we call learning disabilities? cause I think both need study #INSAR2018 #AutINSAR A5 https://t.co/oFSpCma3b7
— Corina Lynn Becker (@CorinaBecker) May 11, 2018
In response to your first question, yes. The second question, I’m no 100% sure. Fully agree with the need for further study. #AutINSAR
— Ryan Hendry (@RyanHendry94) May 11, 2018
Q5: Ways to reduce police violence beyond police training — It’s not even clear if police training is effective. Check out the #AutisticWhileBlack and #AutismTooWhite tags for more info. #AutINSAR
— Sara Luterman (@slooterman) May 11, 2018
#AutINSAR A5 The connection between epilepsy and autism is mysterious and underexplored, in my opinion. I’m not sure why there should even be one at all, but there is.
— Douglas Bass (@douglasbass) May 11, 2018
A5. With many of the children, young people, families, carers, teachers we work with ADHD, epilepsy, sensory processing, eating disorders, mental health conditions #AutINSAR
— CRAE (@CRAE_IOE) May 11, 2018
A5 Epilepsy. Connective tissue disorders. Sleep. Mental health. Also important to compare data on co-occurring conditions in autistic ppl w/data on co-occurring conditions in the DD population generally. Unclear how much of this is actually autism-specific. #AutINSAR
— Julia Bascom (@JustStimming) May 11, 2018
A5 C-PTSD, DID, epilepsy, sensory issues dyspraxia, seriously you need to look into the autistic brain body disconnnect! #AutINSAR #INSAR2018 #AutINSAR
— MultiplyAutistic (@MultplyAutistic) May 11, 2018
Brain-body disconnect is huge, yes! So many of us talk about being disconnected and struggling to access bodily feedback. #AutINSAR
— We Are Like Your Child (@wearelikeyrkid) May 11, 2018
Do you all think this is inherent to some autistic phenotypes or a result of trauma? (or both)
— Joel Schwartz (@DrJoelSchwartz) May 11, 2018
It’s hard to unravel, but I think it’s likely a combination. The way our nervous systems are wired make experiences more intense and more likely to lead to trauma and disconnect but I think there’s also an underlying predisposition toward disconnect in many of us. #autINSAR
— We Are Like Your Child (@wearelikeyrkid) May 11, 2018
Is probably part of benf autistic in my opion but trauma can make it worse #AutINSAR #INSAR2018
— MultiplyAutistic (@MultplyAutistic) May 11, 2018
Is probably part of benf autistic in my opion but trauma can make it worse #AutINSAR #INSAR2018
— MultiplyAutistic (@MultplyAutistic) May 11, 2018
A5: Trauma generally (PTSD, cPTSD and things that don’t quite fit under those headings). A lot of autistic people go through really difficult things to handle, and there seems to be tentative evidence that we’re more likely to be affected badly by it than other people.#AutINSAR https://t.co/RCynaQsLmt
— Oolong (@MxOolong) May 11, 2018
Fascinated by rate of misdiagnosis of autistic women with cPTSD/‘borderline personality disorder’, too. #AutINSAR https://t.co/hJL5HCHvX9
— Lily Levy (@lilyhannahlevy) May 11, 2018
A5 Depression and anxiety. Eating disorders. Epilepsy. #AutINSAR
— S Hydrae (@shydrae) May 11, 2018
A5. Hypermobility and EDS, where even I have weak joints in my hands and difficulty with handwriting etc. #AutINSAR #INSAR2018 https://t.co/oOy43bXDMx
— Jack Welch (@MrJW18) May 11, 2018
A5 trauma, sensory issues brain body disconnect, seizures, executive finctionin #AutINSAR #INSAR2018
— AutisticNotSilent (@AutismDogGirl) May 11, 2018
A5:
– autist vs drug and/or alcohol addictions (unhealthly way of stress managing)
– frequency of physical injuries (because problems with motor coordination and/or indivisibility of attention
– iatrogenic injuries (problems with communicating ailments)#AutINSAR #INSAR2018
— Zaan Tucker (@zaan_tucker) May 11, 2018
A5 Autism, women and Ehlers-Danlos syndromes, all misdiagnosed #AutInSAR #INSAR2018
— janegreen (@JGjanegreen) May 11, 2018
A5 although there is a fair amount of research in this area – anxiety and autism.
Anxiety shouldn’t be an inevitability of being autistic#AutINSAR https://t.co/WcYHOAmagx
— aut sarah (@Sarahmarieob) May 11, 2018
A5: As others have said, Ehlers Danlos. GI issues too.
Also: PTSD. Dissociative disorders. Personality disorders. Depression. Anxiety.
I suspect, if these were looked into, we would learn a lot.#AutINSAR
— Megan Lambert (@negamlambert) May 11, 2018
#AutINSAR A5: Absolutely anxiety and PTSD, as those are quality of life issues. https://t.co/dKDwbO80tI
— #Thinker (@tb_thinker) May 11, 2018
A5:
Either OCD or the GI diseases. Both would be nice but if I had to pick one I’d prefer to learn more of the connection between digestive problems and autism#AutINSAR
— Shepard Fairfax 🦖⛤⚧ (@therifax) May 11, 2018
A5 Co-occurring conditions that need more attention: EDS & joint disorders, epilepsy, mental health (esp. eating disorders, OCD, trauma, depression, anxiety), sleep disorders, chronic pain and chronic fatigue. #AutINSAR
— Vivian Ly (@viv_ly_mw) May 11, 2018
A5:
– autist living with physical disability (e.g. bedridden, on wheelchair)
– autist after accident (mental and physical consequences)#AutINSAR #INSAR2018
— Zaan Tucker (@zaan_tucker) May 11, 2018
A5, same answer as A2. Research on autistic burn-out would be very valuable. @thinkingautism#AutINSAR #INSAR2018 https://t.co/jiIagnrXWu
— Ruminate like a Dutch Aspie (@RuminateAspie) May 11, 2018
Is probably part of benf autistic in my opion but trauma can make it worse #AutINSAR #INSAR2018
— MultiplyAutistic (@MultplyAutistic) May 11, 2018
A5: PTSD#AutINSAR #INSAR2018
— S. (@E_c_h_o) May 11, 2018
Q5
I’d be really interested in seeing the extent to which comorbid anxiety, depression, and OCD are tied to autism as a baseline vs. societal barriers and relative access to support. #AutINSAR #INSAR2018
— (((Jay Edidin))) (@RaeBeta) May 11, 2018
EDS, Anxiety, Depression https://t.co/Mg407zxw9U
— Tanea Paterson (@Tanea_nz) May 12, 2018
POTS and Ehlers-Danols, maybe. I would also be interested in knowing more about motor issues involved in producing (or not being able to produce) oral speech #autINSAR #INSAR2018 A5 https://t.co/cIXyXh37Rp
— Solveig ⚧ – Autistic Acceptance Worldwide (@autisticb4mmr) May 12, 2018
And: Alexithymia as a consequence of NTs gaslighting your emotions.
— Immanuel Brändemo (@trollhare) May 13, 2018
Q6: What are some concerns of minority autistic community members that don’t get enough research attention?
Q6: What are some concerns of minority autistic community members that don’t get enough research attention? #AutINSAR #INSAR2018
— Thinking Person’s Guide To Autism (@thinkingautism) May 11, 2018
A6 – We did a survey of over 1000 parents of autistic children about their diagnostic/post-diagnostic experiences. 95% were White British. We need to learn more about concerns and needs of BAME communities in this regard. #AutINSARhttps://t.co/IlLtjQgkDO
— Laura Crane (@LauraMayCrane) May 11, 2018
A6 – And here’s our @CRAE_IOE @AutismINSAR poster on knowledge and awareness of autism in Somali parents…https://t.co/kxkMVtGra3 #AutINSAR
— Laura Crane (@LauraMayCrane) May 11, 2018
Come and see! @LauraMayCrane presents her poster (w/ Amal Hussein @liz_pellicano) on ‘Knowledge and awareness of #autism amongst #Somali parents in the UK’ #109 #INSAR2018 pic.twitter.com/nxrbqwzKcy
— CRAE (@CRAE_IOE) May 10, 2018
A6 ABA is abuse, #AutINSAR
— MultiplyAutistic (@MultplyAutistic) May 11, 2018
A6: Based on talking with the parents of non/minimally-speaking autistic children of color, police interactions and the threat of violence is very high up there. This is not something that GPS trackers alone can solve (if at all) #AutINSAR https://t.co/mosgSU7XXb
— Meryl Alper (@merylalper) May 11, 2018
A6: https://t.co/0grotXJRsC #AutINSAR
— Damian Milton (@milton_damian) May 11, 2018
A6: I think we still don’t know much about supporting autistic people through gender transition.
I worry that people in gender clinics aren’t well versed in autism? (given that we know even folk in general mental health services aren’t always great on that front!)#AutINSAR https://t.co/kbb5hnd0iZ
— Sue Fletcher-Watson (@SueReviews) May 11, 2018
A6 raising an autistic child, like an autistic child with out forcing them to pass and teaching them sensory and communication supports and ways to do things that work for the mpinstead of acting NT #AutINSAR #INSAR2018
— MultiplyAutistic (@MultplyAutistic) May 11, 2018
A6. Teaching autistics consent and the right to say no! #AutINSAR #INSAR2018
— MultiplyAutistic (@MultplyAutistic) May 11, 2018
Q6
Stimming as positive
Sensory – habituation in autitory and visual processing but from a positive artistic & creative perspective ie music #AutINSAR
— jon adams (@soundcube) May 11, 2018
a6 higher rates of disciplinary action on disabled poc in the school system #autinsar
— ⚡️ homo qui vixit ⚡️ (@endeverstar) May 11, 2018
A6: People of Color are vastly underserved and unprotected and at high risk of negative outcomes including early death. Transgender and gender divergent Autistics need support, validation, and better access to health care. #AutINSAR
— We Are Like Your Child (@wearelikeyrkid) May 11, 2018
A6: Gender binarism as a research default plus low volume of LBGT issues in research. #AutINSAR
— Chris Connor (@ChiDeltaWithNOR) May 11, 2018
Great comment from someone to Female Autism Phenotype panel- we need to develop a phenotype that isn’t just white &middle class. People of colour massively underrepresented in autism clinic populations versus local populations, so it’s kind of a double discrimination. #AutINSAR https://t.co/wxBdt80qq7
— Lily Levy (@lilyhannahlevy) May 11, 2018
A6: An issue I was reminded of shortly before this chat–How can we ensure that autistic people w/ intellectual disabilities are enabled to participate in chats like this? #AutINSAR https://t.co/gQV66mTBqP
— Emily Paige Ballou (@epballou) May 11, 2018
A6 How the same autistic characteristics are interpreted differently—including overlooked entirely, or interpreted more negatively—by providers, educators, peers, etc. #AutINSAR #INSAR2018
— #autchat mod (@autchatmod) May 11, 2018
Oh my goodness, yes. YES. #AutINSAR https://t.co/794mwwcmbb
— Lily Levy (@lilyhannahlevy) May 11, 2018
A6 Police violence, and the ineffectiveness of police trainings. The school to prison pipeline. Bilingualism. Culturally competent (and gender-competent) diagnostic criteria. IDENTIFYING AUTISTIC ADULTS, especially since POC & women are likely to be diagnosed later. 1/2 #AutINSAR
— Julia Bascom (@JustStimming) May 11, 2018
A6 The sheer number of LGBT autistics. How to bring inclusive practices to scale in communities with the least resources/most underinvestment. 2/2 #AutINSAR
— Julia Bascom (@JustStimming) May 11, 2018
A6: And like, how relationships/sexuality may be very different for us than for other LGBTQ people. Favorite piece on this by @emilybrooks89: https://t.co/DocJrfGW1z #AutINSAR https://t.co/l03sHcNPGu
— Emily Paige Ballou (@epballou) May 11, 2018
A6: It’s pretty obvious that autism is massively under-diagnosed in populations that aren’t white. We need good research into why exactly that is – and how clinicians can make sure that fewer are missed out.
Plus, again, variations in gender and sexuality. Common: why?#AutINSAR https://t.co/WW8uU2Tbfx
— Oolong (@MxOolong) May 11, 2018
#AutINSAR A6 How does autism present in girls? Are there really a lot more autistic boys? Do girls do a better job of masking?
— Douglas Bass (@douglasbass) May 11, 2018
Great question, Douglas! We had a talk on this ealier. We know that autistic women engage in more camouflaging behaviour than men, and that our original estimates od gender prevalence were off- it’s not 4 boys to every 1 girl, more like 3 or even 2. #AutINSAR https://t.co/1rCBVPi997
— Lily Levy (@lilyhannahlevy) May 11, 2018
A6. Lack of ethnic miniorities in research & much western-cultured #autism research. CRAE have done research on UK Somali community @LauraMayCrane & published research on autism awareness Nepal @liz_pellicano @journalautism #AutINSAR https://t.co/Eoj4ekZF8s
— CRAE (@CRAE_IOE) May 11, 2018
A6 The concerns of BME autistics, LD autistics and ‘non gender conforming’ autistics. I don’t know what their concerns are because we often don’t get to hear their voices amplified.
These are groups who need more space in research.#AutINSAR https://t.co/CH6YA2eD9s
— aut sarah (@Sarahmarieob) May 11, 2018
A6. Contrasts in localities when it comes to support and quality of life for #autistic children who have comfortable backgrounds and those who are in deprivation, in care etc. #AutINSAR #INSAR2018 https://t.co/Hj7lGt6hd2
— Jack Welch (@MrJW18) May 11, 2018
A6: And like, how relationships/sexuality may be very different for us than for other LGBTQ people. Favorite piece on this by @emilybrooks89: https://t.co/DocJrfGW1z #AutINSAR https://t.co/l03sHcNPGu
— Emily Paige Ballou (@epballou) May 11, 2018
A6:
– generally autistic people in non-western tradition countries (in many “autist” is used as an insult)#AutINSAR #INSAR2018
— Zaan Tucker (@zaan_tucker) May 11, 2018
A6 Experiences of multiply marginalized autistics involve more run-ins with instutitions. School-to-prison pipeline, justice system, adoption, residential schools, poverty.
Trans autistic experiences w/ healthcare.
— Vivian Ly (@viv_ly_mw) May 11, 2018
A6:
Speaking as an autistic women, we need a better understanding and acceptance of autism in girls. I suspect there is actual higher prevelance for boys and men – just a diagnostic one.
Echoing the voices of my friends, the same goes for POC + trans folks.#AutINSAR
— Megan Lambert (@negamlambert) May 11, 2018
A6: SO MANY Autistic people are non binary trans. And yet the paperwork and assessments are all he/she language 🙄#AutINSAR https://t.co/kJ1pnudww4
— That Mog One✨🧜♂️ (@MogTheConfessor) May 11, 2018
A6:
Transgender, nonbinary, and gender nonconforming individuals on the spectrum. The structure of their brain is going to be very different than their cis/gender conforming counterparts#AutINSAR
— Shepard Fairfax 🦖⛤⚧ (@therifax) May 11, 2018
*takes a deep breath*
I have known that I’m transgender, and I knew this since I was maybe three years old.
My language acquisition came primarily through echolalia, and I didn’t have the words for “transgender” and therefore I couldn’t tell anyone.#autINSAR #INSAR2018 https://t.co/mSNwjQuYgf
— Solveig ⚧ – Autistic Acceptance Worldwide (@autisticb4mmr) May 12, 2018
What would my life have been like if I could’ve said something? Of course, would anyone have listened? I really don’t know.
1) I didn’t know the right words
2) I couldn’t speak for myself
3) People like me weren’t represented
4) Gender stereotypes hurt#autINSAR #INSAR2018 A6
— Solveig ⚧ – Autistic Acceptance Worldwide (@autisticb4mmr) May 12, 2018
Autistic while pregnant – why it’s missed, why it’s seen as Ante Natal Depression and the long term ramifications on Autistic women and families.
— Historica (@HistoricaOnline) May 12, 2018
Q7: How can we better support #ActuallyAutistic autism researchers?
Q7: How can we better support #ActuallyAutistic autism researchers? #AutINSAR #INSAR2018
— Thinking Person’s Guide To Autism (@thinkingautism) May 11, 2018
A7: shout out to @AutisticaUK who have a scheme to link up autistic people who want research training with established researchers.
Also we need better training for supervisors / colleagues on supporting autistic folk in the workplace. #AutINSAR https://t.co/WqGVt3gA8a
— Sue Fletcher-Watson (@SueReviews) May 11, 2018
A7 Making the work environment for researchers friendly to #ActuallyAutistic people would go a long way, as well as working on the structural barriers that make it difficult for many autistic people to get through academia. #AutINSAR https://t.co/9RDX1vOmCM
— autselfadvocacy (@autselfadvocacy) May 11, 2018
a7 FUNDING #autinsar
— ⚡️ homo qui vixit ⚡️ (@endeverstar) May 11, 2018
#autinsar A7: connect with local non-profits for research partners, don’t use jargon as much as possible. make events accessible and affordable. #INSAR2018
— Corina Lynn Becker (@CorinaBecker) May 11, 2018
A7: By those getting established (like me) helping others and building networks like https://t.co/neZHa1k4O0 #AutINSAR #autisticsinacademia
— Damian Milton (@milton_damian) May 11, 2018
A7 More support for autistic researchers who can’t do full-time grad school/academia without burning out. #AutINSAR #INSAR2018
— #autchat mod (@autchatmod) May 11, 2018
Move away from the old school bias against “me-search” and stop viewing autism in such a deficit-based light that we’re presumed incompetent. Established researchers mentor and boost new Autistic researchers. #AutINSAR
— We Are Like Your Child (@wearelikeyrkid) May 11, 2018
A7. Improving accessibility of conferences and the like, via real-time captioning, etc. Ensuring better disability accommodations at school. #AutINSAR #INSAR2018 https://t.co/ftIaF4zhHy
— codeman38 (@codeman38) May 11, 2018
A7 (part 2): Better support for *non-academic* challenges that someone might have. I could get plenty of academic support in grad school – but help arranging grocery trips or apartment cleaning was another story. #AutINSAR #INSAR2018
— codeman38 (@codeman38) May 11, 2018
A7 (part 3): Accommodating autistic researchers’ communication preferences. I’m continually amazed at how much more easily I can follow text chats than conference calls or in-person discussions when the option is available. #AutINSAR #INSAR2018
— codeman38 (@codeman38) May 11, 2018
A7 (belated part 4): Another autistic accessibility issue at conferences: really noisy poster rooms. I often have trouble hearing a single presenter over everyone else—and if I have to present myself, I end up completely fatigued at the end. #AutINSAR #INSAR2018
— codeman38 (@codeman38) May 11, 2018
Conference calls are the devil. Huge issue for me in my career field, too. #AutINSAR https://t.co/QHbkw1XkK1
— Emily Paige Ballou (@epballou) May 11, 2018
Q7
The research environment may be #autistic people ‘unfriendly’
Lack of understanding of adjustments
Application and work support needed but on the #ActuallyAutistic researchers terms not #Neurotypical terms#AutINSAR #insar2018
— jon adams (@soundcube) May 11, 2018
Q7. Make it known that autistic students are welcomed and valued in your lab! Not only are the autistic trainees of today the #ActuallyAutistic research leaders of tomorrow, but their perspectives improve the work of any autism research lab in the here and now. #autinsar
— Noah Sasson (@Noahsasson) May 11, 2018
A7 Fund us. Mentor us. Don’t question our ability to research our community when we have men membership in that community.#AutINSAR https://t.co/1OoePz8bCW
— aut sarah (@Sarahmarieob) May 11, 2018
#AutINSAR A7 #ActuallyAutistic autism researchers are rare and relatively unknown. I would like #INSAR to sponsor a workshop on autism research conducted by autistic autism researchers. (Organized by AAR’s too. 🙂)
— Douglas Bass (@douglasbass) May 11, 2018
A7 Autistic people may need more support from mentors, and are also vulnerable to abuse within academia, like we are outside of it. An abusive mentor can end a career. Departments need to take responsibility for preventing this. #AutINSAR #INSAR2018
— theories of minds (@theoriesofminds) May 11, 2018
A7. Schemes which specifically invite aspiring researchers and having the support structures in place to guide them through this area. Credit to @AutisticaUK who are leading the way with this. #AutINSAR #INSAR2018 https://t.co/N6DG3zbLHG
— Jack Welch (@MrJW18) May 11, 2018
#AutINSAR A7: We can make ourselves more available to researchers so they have “in the field” intelligence to work from. (Conversely, researchers need to be more willing to seek us out and ACTUALLY LISTEN.) https://t.co/bmhcHvXEd9
— #Thinker (@tb_thinker) May 11, 2018
A7: Mentorship is key to get autistic researchers in the field. We can’t handle academic ableism alone. Address ableism in academic circles, create academic spaces w/ universal design. And listen to what we need as accommodations, don’t put the onus on us to get them.#AutINSAR
— Vivian Ly (@viv_ly_mw) May 11, 2018
A7 Advocate for holding networking and social events in rooms with good sound baffling. #AutINSAR
— theories of minds (@theoriesofminds) May 11, 2018
A7:
Autistic people will be too scared to join academia until the ableism stops.
No more insistence on person with autism. No more dehumanization. No more infantalization. Don’t say we’re trapped or empty shells or missing.
Accept and believe autistic adults.#AutINSAR
— Megan Lambert (@negamlambert) May 11, 2018
A7 PAY THEM. #AutINSAR
— Julia Bascom (@JustStimming) May 11, 2018
A7 No, seriously, pay us. There are a lot of different ways to make that happen, from putting us on your boards to targeted fellowships to earmarked funds to making the presence of autistic researchers a requirement for grant funding. But it starts with paying us. #AutINSAR
— Julia Bascom (@JustStimming) May 11, 2018
A7 And reconsider the language and framing you use. Don’t make your colleagues feel like animals at the zoo. #AutINSAR
— Julia Bascom (@JustStimming) May 11, 2018
A7:
– providing for researchers constructive criticism from autistic people 😉
(you know, there are some studies totally detached of reality – they could be better if reviewed)
– more international cooperation (less information/filter bubble)#AutINSAR #INSAR2018
— Zaan Tucker (@zaan_tucker) May 11, 2018
A7. Lots of conversations at CRAE of late to practise what we preach in improving work environment – @annaremington @liz_pellicano @AutisticaUK published research on evaluation of an internship for autistic graduate students @DeutscheBank https://t.co/z069X2k63p #AutINSAR
— CRAE (@CRAE_IOE) May 11, 2018
For me, my number one wish for #Autistic research is:
Do #ActuallyAutistic students have better #education outcomes when taught by Autistic #teachers?
Love to do it myself but PhD is too far away, need the data now! #AutINSAR #INSAR2018 #edchat #Autism #disability #Gifted #GLD
— Historica (@HistoricaOnline) May 12, 2018
Please help us get into grad school.
Please help us find scholarships.
Please offer us scholarships.
Help us turn our fuzzy ideas into concrete proposals.
Help us with the actual application processes.
Help us make connections.
Help us find accommodations.#AutINSAR #INSAR2017 A7 https://t.co/thJQsa38m5
— Solveig ⚧ – Autistic Acceptance Worldwide (@autisticb4mmr) May 12, 2018
Yep. I have 0 idea what I’m going to do after my PhD. I suddenly had the realization today that getting a job requires talking to other people, esp. strangers. Even at conferences, I never make “connections” or know how, even if I talk to people. #AutINSAR https://t.co/qiFx8tvW9V
— AutisticScienceLady (@AspieHuman) May 13, 2018
Q8: Any topics we’ve missed that you’d like to discuss?
Q8: Any topics we’ve missed that you’d like to discuss? #AutINSAR #INSAR2018
— Thinking Person’s Guide To Autism (@thinkingautism) May 11, 2018
#AutINSAR #INSAR2018 a1 What happens in the UK when autistic people ask for help with mental health problems. There seems to be a problem in places of people being turned away because they are autistic.
— Liz (@Lizreally10) May 11, 2018
It’s really unfortunate to experience huge inconsistencies, eg neighbouring West Midlands areas, one with good MH assistance for autistics, while a few miles away, disaster. It’s all down to GPs apparently…
— The Neurodivergent Civil Rights Movement #NDCRM (@Aspergreatness) May 11, 2018
We (@CRAE_IOE @liz_pellicano) have done some work on this – co-produced with a team of young autistic people (@MrJW18 @mindtheflap @FernRaineach)
Free to read here https://t.co/LWSKztqKwa #AutINSAR
— Laura Crane (@LauraMayCrane) May 11, 2018
Thank you. This is very interesting and revealing. What I was thinking about was where and why there is a policy of refusing mental health support to adults BECAUSE they are autistic, as if autism made them beyond help, and if this is becoming NHS policy? #INSAR2018 #AutINSAR
— Liz (@Lizreally10) May 11, 2018
Lots of the young people we spoke to raised concerns about this (and it’s not acceptable – it really needs to be addressed urgently) #AutINSAR
— Laura Crane (@LauraMayCrane) May 11, 2018
For the benefit of those in the #AutINSAR press room, here’s the article I mentioned…
“The influence of media suggestions about links between criminality and autism spectrum disorder”https://t.co/xcG48dHemD in @journalautism
— Laura Crane (@LauraMayCrane) May 11, 2018
This chat format has a lot of accessibility issues, IMO. I wish there were an easier way to find the original question for an answer – sentence-fragment answers w/ no context are confusing. #AutINSAR #INSAR2018 https://t.co/mPD5t2OHSL
— codeman38 (@codeman38) May 11, 2018
It also moves really fast. I know folks at #INSAR2018 in person are pressed for time, but I’d love to see more than an hour available for the chat. #AutINSAR
— Emily Paige Ballou (@epballou) May 11, 2018
Understood. We’ll work on that for next year. And we will publish a nice in-time summary #AutINSAR
— Shannon Rosa (@shannonrosa) May 11, 2018
A8 – Final thoughts? How awesome the @thinkingautism #AutINSAR chat is! No douchebags in the press room 😉
— Laura Crane (@LauraMayCrane) May 11, 2018
Thank you, Laura. We will work on a mot juste to express that final concern in the lead-up to next year’s #AutINSAR chat. At TPGA, we keep our priorities in the proper order. 😉 https://t.co/4seQR8qv30
— Carol Greenburg (@Aspieadvocate) May 11, 2018
A8 The Autism CARES Act directs federal agencies regarding autism research. If we want a place to start advocating for research that benefits autistic people, this is it. This bill is up for re-authorization this year – keep an eye out for advocacy opportunities! #AutINSAR https://t.co/w5EdFicRIT
— autselfadvocacy (@autselfadvocacy) May 11, 2018
Rhetorical A8: Why is it the usual suspects in terms of researchers (in good way) following and commenting here but not wider appeal? #AutINSAR
— Damian Milton (@milton_damian) May 11, 2018
Q8
Why when were told it’s bad for #autistic people to have #SpecialInterests which are often whispered in hushed disappointed voices by NTs
When there are
‘Special interest groups’
for researchers here!!!
Is that why they’re early so we don’t notice?#AutINSAR #insar2018
— jon adams (@soundcube) May 11, 2018
Irreversible photographic proof that ‘special interests’ are utterly valid & just common to all #neurodiversity NT & ND included
If it’s good enough for them
it’s good enough for us
Lol#INSAR1018 #AutINSAR #AutisticCultureShift #autistic #SpecialInterests pic.twitter.com/sFJHfTWsMj
— jon adams (@soundcube) May 11, 2018
#autinsar Q8: I’d like to invite researchers to take the time to learn about disability studies and the neurodiversity paradigm. I’d also suggest that researchers studying LGBT+ autistic people move away from binary results pages? #INSAR2018
— Corina Lynn Becker (@CorinaBecker) May 11, 2018
A8: Yes on multidisciplinary research; is the field still slow to make that a norm or is the resistance to change with other reasearch fields? #AutINSAR
— Chris Connor (@ChiDeltaWithNOR) May 11, 2018
A8: As someone who studies autistic kids’ tech use (because my background is as a children’s media researcher), I’m always interested in best qualitative methods: how to observe, interview, understand autistic kids’ lives that isn’t exploitative or adds more stress #AutINSAR
— Meryl Alper (@merylalper) May 11, 2018
A8: We need to support those who are Autistic AND parents. There are jewels of wisdom there that repeatedly get passed by to focus on what NT parents have to say about autism. The entire world needs to hear more from Autistic parents. #AutINSAR
— We Are Like Your Child (@wearelikeyrkid) May 11, 2018
Yes, I wish the bias that so many issues are about autistics vs. parents would end. So many autistics ARE parents, to both autistic & non-autistic kids. #AutINSAR
— Emily Paige Ballou (@epballou) May 11, 2018
A8: I see it happening to an extent, but would love to see more research moving away faster from view of autism as primarily a disorder of social skills, sociability, or empathy. Range of topics I saw in program book online was promising, though. #AutINSAR https://t.co/M3OhQDDV1q
— Emily Paige Ballou (@epballou) May 11, 2018
This ties in with the thing I was mentioning earlier about sensory issues being underrepresented in research! #AutINSAR https://t.co/xn87huP2Ba
— codeman38 (@codeman38) May 11, 2018
#AutINSAR A8 Is autism a form of human evolution? What can #ActuallyAutistic people contribute to human survival? Given the difficulties the neurotypical world faces, maybe autism is a necessary corrective.
— Douglas Bass (@douglasbass) May 11, 2018
A8: Something I wish researchers/clinicians would rethink is “rigidity.” Saw results of Allison Ratto’s study re: rigidity & bilingualism w/ interest…. 1/2 #AutINSAR https://t.co/M3OhQDDV1q
— Emily Paige Ballou (@epballou) May 11, 2018
…But wish research would focus more on increasing comfort, confidence, autonomy, rather than just considering rigidity bad/undesirable. “Rigidity” is often way of trying to keep ourselves safe. 2/2 #AutINSAR
— Emily Paige Ballou (@epballou) May 11, 2018
Believe it or not, we often DO know our own limits, even as very young children, and resist having them violated. #AutINSAR https://t.co/CDtVLRXAtl
— Emily Paige Ballou (@epballou) May 11, 2018
2/3 Dealing with rigidity before addressing causes of anxiety is backwards
— Kelly Priest (@KellyPriest3) May 11, 2018
In general, I wish researchers (and others) would start by asking “what does this trait/tendency/behavior do that helps the autistic person doing it, and what environmental/social features is it a response to?” #AutINSAR https://t.co/8IgCHrIcZj
— theories of minds (@theoriesofminds) May 11, 2018
A8 like @milton_damian often argues there should be many more disciplines in #INSAR2018 research. Social studies, anthropology, critical studies, design research, action research, law… https://t.co/yvMIAN4fkd
— jelle van dijk 🌍 (@theblub) May 11, 2018
DISABILITY STUDIES #INSAR2018 #AutINSAR
— Corina Lynn Becker (@CorinaBecker) May 11, 2018
A8 Not to be a broken record, but 2% of autism research funding in the US goes to adults, and 2% goes to services. Come on. We are adults who need services for the majority of our lives–we can’t even get to 10% of funding? #AutINSAR
— Julia Bascom (@JustStimming) May 11, 2018
A8 INSAR absolutely needs to start developing ties with scholars in the humanities. For instance this horrifying result below cries out for the perspective of gender and society scholars e.g. #AutINSAR https://t.co/53B6XcmE9p
— S Hydrae (@shydrae) May 11, 2018
A8. We’re vocal about research that isn’t in our best interests, but what tips would we give to researchers who are thinking of new #autism studies. #AutINSAR #INSAR2018 https://t.co/ypj7FElw4V
— Jack Welch (@MrJW18) May 11, 2018
A8 the role of non autistics in failed social interactions #AUTINSAR
— AutisticNotSilent (@AutismDogGirl) May 11, 2018
A8:
– changes in the reception of autistic people at different times and cultures (autism as a necessary part of civilization)#AutINSAR #INSAR2018
— Zaan Tucker (@zaan_tucker) May 11, 2018
Why I so distrust 3rd party reports of autistic people’s impaired decision-making. Just b/c we have different priorities, wouldn’t make the same decisions you would, doesn’t mean we can’t make meaningful decisions. #INSAR2018 #AutINSAR https://t.co/AHCoQB8KzM
— Emily Paige Ballou (@epballou) May 11, 2018
Something related to #autINSAR and #INSAR2018 that I can’t quite piece to a question is… I wonder if there’s connection between growing up needing facilitated communication, and experiencing alexythemia.
Like, when my mom tells me how I feel, but gets it wrong?
— Solveig ⚧ – Autistic Acceptance Worldwide (@autisticb4mmr) May 12, 2018
Thanks so much for joining #AutINSAR!
Thanks so much for joining #AutINSAR! We’re going to end our official posting, but please feel free to keep answering the questions. We’ll post a summary in two or three days once everyone’s had a chance to join. #INSAR2018
— Thinking Person’s Guide To Autism (@thinkingautism) May 11, 2018
thanks everyone who worked on making #autinsar happen!
— ⚡️ homo qui vixit ⚡️ (@endeverstar) May 11, 2018
Thank you for hosting this chat. It was pleasant and informative. Excellent work here from everyone. #autINSAR
— We Are Like Your Child (@wearelikeyrkid) May 11, 2018
So fantastic to be in the room where it happened for #AutINSAR – such interesting conversations with brilliant people, makes me really hopeful about the future of autisn research! One of the conference highlights for me. #INSAR2018 pic.twitter.com/97bumHHb5H
— Lily Levy (@lilyhannahlevy) May 11, 2018
I took great encouragement in #AutINSAR, getting to put in my $.02 worth. Looking forward to future conversations! (I might need to go lie down now.)
— Douglas Bass (@douglasbass) May 11, 2018
Happy to participate in the #AutINSAR chat in person this year… perhaps one of my favorite things from #INSAR2018!
— Andy Colombo-Dougovito (@amcdphd) May 11, 2018
A: Not solvable, but on personal level to help build bridges…humility, effort and compassion. #AutINSAR https://t.co/BcM6LJNNBN
— Damian Milton (@milton_damian) May 11, 2018
Thank you for the encouragement & support over the last few days @thinkingautism @shannonrosa @slooterman
Please to meet you both in the ‘real world’ & chat – plot – share #INSAR1018 #AutINSAR
— jon adams (@soundcube) May 11, 2018
We need a wider spread of #actuallyautistic people involved with in #INSAR2018 #AutINSAR for the widest variation & richness of lived experience view & talent – I feel no one person can represent ‘all the community’ at any ‘one point’ – we need an #AutisticCultureShift
— jon adams (@soundcube) May 12, 2018
So #Rotterdam ‘from the roof’ in between sessions #INSAR1018 #AutINSAR pic.twitter.com/ZTQUD1nh57
— jon adams (@soundcube) May 11, 2018
