IMFAR: Now With More Autistic Priorities! TPGA's 2017 Conference Report

Shannon Des Roches Rosa 
Senior Editor, TPGA

Welcome to IMFAR 2017!
[image: three white autistic folks: Corina Becker,
Steven Kapp, & Carol Greenburg, posing by
the "Welcome to IMFAR 2017" sign.]

We have been reporting from IMFAR, the annual International Meeting for Autism Research, since 2011. This year we provided general live coverage via Twitter, with select roundups including the Press Conference, and highlights from sessions such as Autism and Aging, Understanding Barriers to Autism Diagnoses for Children from Racial/Ethnic Minority Groups in the U.S., Mental Health Crises in Autistic Youth, and Autism and Sexuality. We also co-hosted the #AutIMFAR chat with autistic and autism research community members.

While the research presented at IMFAR continues to be varied in scope, and is still too disproportionately skewed towards prenatal, infant, and early childhood findings, our takeaway is that the 2017 meeting in San Francisco had the biggest increase in neurodiversity-oriented content and attendees we've seen so far. This is a welcome shift.

There were no fewer than five autistic media members at the press conference, including first-time IMFAR attendees John Marble for NOS Magazine, and Elizabeth Bartmess of #autchat, along with IMFAR veterans Carol Greenburg of TPGA, Corina Becker of Autism Women's Network, and Dena Gassner. In addition to this increase in (openly) autistic participants, several events were dedicated to autistic feedback on the direction of autism research. And I can't imagine acceptance-based research being included in IMFAR's early years, yet in 2017, there it was:

According to Nikko Da Paz of UCSF her study shows the healthiest thing you can do is accept your child's autism #imfar2017

— John Elder Robison (@johnrobison) May 13, 2017

Even though IMFAR 2017 saw improvement in the direction(s) of autism research, there was also much of the same old same old, according to University of Edinburgh researcher Sue Fletcher-Watson. And the needed epiphanies and attitude shifts resulting from focusing more on autistic needs often meant discussing unpleasant under-scrutinized realities, as Emily Willingham reported, in Half Of Autistic Adults Feel A Low Sense Of Well Being. But overall, a positive shift in including and respecting autistic people themselves was palpable:

"The focus at IMFAR on an autistic perspective and autistic adults represents a change in attitudes and emphasis at this enormous international conference over the years. Five years ago, the phrasing in most of these talks was “people with autism” and “subjects” with a distinct tone of condescension, and the populations in the studies were mostly boys. This year, people are “autistic people,” the tone is one of much greater respect and care, autistic people were visible and participating, and researchers seem to have realized that not all autistic people are little boys."

The more people talked about unmet autistic needs, the more under-examined topics emerged. Sue Fletcher-Watson (in person) and John Elder Robison (online) emphasized the need for researchers to pay attention to autism subjects autistic people and their allies consider common knowledge, then reinforce that knowledge with studies and data to both legitimize areas of need, and make them actionable. Precedents discussed during the conference include Liz Pellicano and Felicity Sedgwick's findings on autistic women's friendships, Noah Sasson and crew's observations on non-autistic people's harshly judgmental attitudes towards autistic people, and Lynsey Calder and team's confirmation that autistic children don't always share non-autistic social motivations. Autistica UK, a UK autism research charity that aims to be "the bridge between people with autism and researchers, ensuring that research responds to the needs of individuals with autism and their families," has even provided a list of Top 10 Questions for Autism Research.

Researchers who addressed autistic needs at IMFAR itself include Sarah Cassidy, of Coventry University, who followed up on last year's groundbreaking autism and suicidality SIG with a SIG dedicated to asking the right questions and developing autism-appropriate support methods. Laura Crane and the team from University College London's Centre for Research in Autism and Education (CRAE) talked about helping autistic people, specifically minors, navigate Family Court systems (a TPGA interview with Dr. Crane is forthcoming). And the researchers in the panels on Mental Health Crises in Autistic Youth and Autism and Sexuality were mostly on point, according to autistic audience members.

But part of the problem, as CRAE's Liz Pellicano reported in 2014, remains that:

"Research into effective ways of responding to the immediate needs of autistic people is, however, less advanced, as are efforts at translating basic science research into service provision. Involving community members in research is one potential way of reducing this gap."

Which is exactly what was discussed during Dena Gassner's Special Interest Group on Incorporating Autistic Intellect (a follow-up to her IMFAR 2016 panel), for example:

Stephen Shore @Tumbalaika talking about need to research what is preventing #autistic ppl from getting proper medical care. #IMFAR2017

— ThinkingAutismGuide (@thinkingautism) May 12, 2017

…because #autsitic ppl are NOT getting proper medical care, as evidenced by shortened life span, elevated suicidality, etc. #IMFAR2017

— ThinkingAutismGuide (@thinkingautism) May 12, 2017

IMFAR 2017 Autistic Intellect SIG panelists:
Steven Kapp, John Robison, Dena Gassner, Stephen Shore
[image: four white autistic people posing in a hotel conference room.]

Another IMFAR 2017 event channeling autistic priorities and knowledge was AutIMFAR, a Twitter chat with both onsite and online participants from the autistic and/or autism research communities, co-hosted by #autchat, The Autistic Self Advocacy Network, Autism Women's Network, NOS Magazine, and Thinking Person's Guide to Autism. During the chat, we asked participants these 10 questions:

1. What top three priorities would you pick for autism research, if you could? 
2. What are some really obvious-to-autistic people under-researched autism areas? 
3. What are some disconnects you’ve observed between research findings and #actuallyautistic experiences?
4. What kinds of feedback from autistic people are most useful to researchers? 
5. How can autistic communities support researchers whose work we value? Can we provide leverage in getting funding?
6. How can autistic & autism research communities better support autistic autism researchers and increase their numbers?
7. What shifts have you seen in inclusion of autistic community feedback on research over time? How can this improve?
8. For people with experience interfacing with both communities: What has surprised you about each?
9. What disconnects do you see between autism research and clinical practice? 
10. Any topics we’ve missed that you’d like to discuss? 

The #AutIMFAR chat's full responses were valuable, varied, and voluminous (and very much worth your time). Some highlights:

Q1: Research on co-occurring conditions needs to happen. Especially epilepsy and suicidality. They're our biggest killers. #AutIMFAR

— NOS Magazine (@NOSeditorial) May 12, 2017

A1) Steven Kapp says reliable communication (like AAC), services, and adulthood! #AutIMFAR

— the tiniest doomwook (@drdebah) May 12, 2017

A1 More research is needed for
1. Females
2. People of color
3. Adults #AutIMFAR

— 🕊The Healstorian (@TheHealstorian) May 12, 2017

A1 Ageing and autism, Supported decision-making protocols. #AutIMFAR

— Carol Greenburg (@Aspieadvocate) May 12, 2017

A1: Integrating autistic athletes to pro and college sports, creating culture for autistic POCs, autism & sexual ids #AutIMFAR #IMFAR2017

— Timotheus Gordon Jr. (@timgordonjr) May 12, 2017

A2: Sensory processing differences.*** Motor/movement differences*** Echolalia as alternate pathway for language acquisition. #AutIMFAR

— Julia Bascom (@JustStimming) May 12, 2017

A2: stop w ALL THE FALSE BINARIES, like low and high function, gender binaries, etc. #autimfar

— Emily Willingham🏁 (@ejwillingham) May 12, 2017

A5: If we had funding, we'd contribute to and support research. Unfortunately, many of us are in poverty. #AutIMFAR

— NOS Magazine (@NOSeditorial) May 12, 2017

A4. Most useful feedback: How to make participation in studies as easy as possible. #AutIMFAR

— Chris Gunter (@girlscientist) May 12, 2017

A5: If we had funding, we'd contribute to and support research. Unfortunately, many of us are in poverty. #AutIMFAR

— NOS Magazine (@NOSeditorial) May 12, 2017

A8: Academic community's not-so-well-veiled stigma re my autistic colleagues.
#autimfar

— Christina Nicolaidis (@cnicolaidis) May 12, 2017

And a few responses that need to be plastered on the wall of every autism research area, such as:

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

— Julia Bascom (@JustStimming) May 12, 2017

The #AutIMFAR Onsite Crew
[image: hotel conference room gathering of autistic & non-autistic researchers
& community members, of various genders & races, mostly white & female,
which is fairly representative for IMFAR.]

Even the traditional stakeholder's lunch pivoted on autistic input. Emcee John Elder Robison put representatives from Autism Speaks, SPARK, and the Autism Science Foundation on the spot, by asking them to tell the audience how they incorporate autistic people and priorities into their efforts, and why he thinks this is important:

@johnrobison =asking @autismspeaks, @AutismScienceFd & @SPARKforAutism to talk about what they’re doing to include #autistic ppl. #IMFAR2017

— ThinkingAutismGuide (@thinkingautism) May 12, 2017

@johnrobison is heartened by upcoming generation of young #autistics who are working to improve QoL for their entire community. #IMFAR2017

— ThinkingAutismGuide (@thinkingautism) May 12, 2017 

The autism research organizations' representatives' responses to Robison's challenge ranged from enthusiastic and exemplary, to surprised and tentative, but the message is clear: Autistic people are holding autism research organizations accountable, and need to be included in autism research efforts. It is no longer acceptable for autism research conference participants to talk about autistic people as "them"; these discussions need to be about "us."

IMFAR selfie: Shannon Rosa & Deb Karhson
[image: a white woman with red hair and duck lips,
and a smiling Sri Lankan/Nigerian-American woman
with glasses and long curly black hair]

I also spent time chatting with Stanford's Dr. Deb Karhson, whom TPGA recently interviewed, and whose adult brother is a high-support autistic dude like my own son. When weren't politely but firmly dual-info-firehosing a journalist who unwittingly dropped the oh-no-he-didn't of an "autism is like cancer because" comparison on us during Deb's poster on blood-based biomarkers, we were musing about how people with ability profiles like the beloved autistic men in our lives were still mostly sidelined, disrespected, pitied, or objectified during IMFAR 2017:

I'm real tired of people describing high support autistics as "difficult to test". How abt ur study isnt adaptive? #IMFAR2017

— the tiniest doomwook (@drdebah) May 12, 2017

Wondering why I’m not covering more sessions for high-support #autistic ppl like Leo? It’s bc rsrch rarely presumes competence. #IMFAR2017

— Shannon Rosa (@shannonrosa) May 12, 2017

Most (not all) research about high-support #autistic ppl assumes they are burdens, beyond hope, need controlling, etc. Insulting. #IMFAR2017

— Shannon Rosa (@shannonrosa) May 12, 2017

I’d like to see more research into how #autistic commonalities can translate to improving high support ppls’ QoL. #IMFAR2017

— Shannon Rosa (@shannonrosa) May 12, 2017

Hopefully future IMFARs (which will be rebranded as INSARs, starting in 2018) will make progress in addressing and respecting the needs of autistic people of all abilities as well. Deb and I and many others will certainly be monitoring the situation.

----

P.S. It's not a contest, but, we did win #IMFAR2017—purely in terms of our Twitter coverage. Spectrum's team won for articles published during and about the conference.

TPGA earns its media press pass, once again
[image: Twitter analysis of the top influences of #IMFAR2017:
two columns: top ten by mentions, & top 10 by tweets;
TPGA as @thinkingautism holds the top position in both columns]

Read More

What Are Autistic Research Priorities? Full #AutIMFAR Discussion at IMFAR 2017

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).

The onsite #AutIMFAR chat crew! Fab convo w/autistic and autism research folk. 
[image: hotel conference room gathering of autistic & non-autistic researchers
 and community members, of various genders & races, mostly white.]

#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.

[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:  http://www.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

#autchat mod@autchatmod
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

Carol Greenburg@Aspieadvocate
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

the tiniest doomwook@drdebah
This is @drdebah as a researcher, participating in the #AutIMFAR!

the tiniest doomwook@drdebah
Steven Kapp and I, @drdebah, will both be tweeting our response thru my twitter! #sharingiscaring #IMFAR2017 #AutIMFAR

#autchat mod@autchatmod
Elizabeth Bartmess here helping represent #autchat for #AutIMFAR! I think we'll have some other #autchat community members here tonight too.

#autchat mod@autchatmod
I'm helping represent the #autchat community, a twitter chat by/for autistic & similar people, running for >2 years. #AutIMFAR

#autchat mod@autchatmod
Personally, I'm a former researcher, currently a writer, autistic. Personal account @theoriesofminds. #AutIMFAR

Julia Bascom@JustStimming
I'm the Executive Director at @autselfadvocacy, and an autistic woman with other disabilities myself. Excited for #AutIMFAR!

homo qui vixit@endeverstar
Hi i'll be here a little while. I'm 31, from the usa, autistic, queer, trans, crazy. #AutIMFAR

Meryl Alper@merylalper
Hi #AutIMFAR! I'm Meryl Alper, an Asst. Prof. at Northeastern U. in Boston, studying the media & technology practices of autistic youth.

NOS Magazine@NOSeditorial
.@JHMarble is at #IMFAR2017 reporting for NOS Magazine. #AutIMFAR

NOS Magazine@NOSeditorial
NOS Magazine is the only professional, paid publication entirely by and for neurodivergent people. #ActuallyAutistic #AutIMFAR

Deborah Budding@Nebula63
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

Hansel Asper@hanselasper
Hi All. I'm Aspie volunteer for autism mental health research in UK. #autimfar

Chris Gunter@girlscientist
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@CRAE_IOE
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

Alex Plank@alexplank
I'm participating in the #AutIMFAR chat!  https://twitter.com/thinkingautism/status/862827599898202112 …

Laura Crane@LauraMayCrane
Hi! I'm an autism researcher based at @CRAE_IOE. I'm also #socialmedia editor at @journalautism - looking forward to chatting! #autimfar

Spectrum@Spectrum
Spectrum is joining today's #AutIMFAR at #IMFAR2017 — @ClaireHCameron tweeting!

Emily Paige Ballou@epballou
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 …)

Chris Connor@ChiDeltaWithNOR
HI am Chris Connor, autistic & housing campaigner. Interested how autism research can help improve QoL in area of housing policy #AutIMFAR

⚜️Julia Joy@TheHealstorian
Hello all. Julia Joy. #ActuallyAutistic and Mom of Aspie #AutIMFAR

Kim Elmore@KimEl
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 C-D@amcdphd
Andy, here. Recent PhD from @UVA & future faculty at @UNT_KHPR. I focus on motor skills & phys activity of individuals & families. #AutIMFAR

Anna Mʻ@Unuhinuii
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).

Aria Sky@mamautistic36
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

Lorcan Kenny@LorcanKenny
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

Laura Crane@LauraMayCrane
A1: Number 1 - mental health #autimfar

Alex Plank@alexplank
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

Damian Milton@milton_damian
@SueReviews A1: yes, but your third pick needs socially contextualised (sociological) research. #AutIMFAR

Hansel Asper@hanselasper
A1: yes, mental health & quality of life. #autimfar

Chris Gunter@girlscientist
A1. yikes that's hard in 140! Better ascertainment/diagnosis; involving more people in research; community viability of treatment. #autIMFAR

#autchat mod@autchatmod
A1 Sensory oversensitivities, psychotherapy (what works, what doesn't, developing effective ones), co-conditions. #AutIMFAR #IMFAR2017

homo qui vixit@endeverstar
A1 I'd pick mental health, sexual/gender diversity, and idk what else #AutIMFAR

EyesLikeEels@EyesLikeEels
I agree and think #intersectionality has been glaringly absent from #IMFAR2017 or at least the tagged posts. #AutIMFAR  https://twitter.com/endeverstar/status/862828877709692928 …

Meryl Alper@merylalper
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 …

NOS Magazine@NOSeditorial
Q1: Research on co-occurring conditions needs to happen. Especially epilepsy and suicidality. They're our biggest killers. #AutIMFAR

the tiniest doomwook@drdebah
A1) Steven Kapp says reliable communication (like AAC), services, and adulthood! #AutIMFAR

Carol Greenburg@Aspieadvocate
A1 1. Treating co-occurring conditions in a way that doesn't interfere w/ services Autistics are already getting. #AutIMFAR

⚜️Julia Joy@TheHealstorian
A1 More research is needed for 1. Females 2. People of color 3. Adults #AutIMFAR

Julia Bascom@JustStimming
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

the tiniest doomwook@drdebah
A1) @drdebah says biomarkers for better diags, sensory reactivity, and successful adulthood. #AutIMFAR #IMFAR2017

Laura Crane@LauraMayCrane
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 …

homo qui vixit@endeverstar
@LauraMayCrane *high fives* #AutIMFAR

Spectrum@Spectrum
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

Hansel Asper@hanselasper
A1) Would also like to have more thorough assessment of difficulties included in diagnosis to make it easier to get support. #autimfar

CRAE@CRAE_IOE
A1. Top 3 priorities; autism & ageing, autism & mental health, autism research with more ethnically diverse groups #autimfar

Deborah Budding@Nebula63
@thinkingautism A1: Sensorimotor differences contributing to self-regulation and communication challenges; mental health; epilepsy #AutIMFAR

Spectrum@Spectrum
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

Chris Connor@ChiDeltaWithNOR
A1: Homelessness in autistic community, evidence based studies on housing best practice & autism public housing policy. #autimfar

Carol Greenburg@Aspieadvocate
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

Andy C-D@amcdphd
A1 Physical activity and motor skill improvements to build QoL and help improve access to active leisure activities. #AutIMFAR

Kim Elmore@KimEl
A1. Programs & conditions that improve independent living, AAC and other assistive tech, mental health over the lifespan #AutIMFAR

Kim Elmore@KimEl
A1b. Also participatory research and far better rep of marginalized communities and adults in autism research - so 5? #AutIMFAR

NOS Magazine@NOSeditorial
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

Julia Bascom@JustStimming
A1 & documenting/validating the insights the autistic community has been sharing for years, for a new foundation for research . #AutIMFAR

JinJin@dianejwright
A1 #AutIMFAR. Interesting if sensory amplification, pattern recognition & multiple rapid streams of consciousness were quantified.

the tiniest doomwook@drdebah
@thinkingautism A1) non-verbal communication (ie ASL), functionality of positive compensatory mechanisms, benefit of stimming #AutIMFAR #IMFAR2017

Anna Williams@StarFeuri
@thinkingautism A1. Debunking 60 years of mythology, effective psychotherapies, interventions for #allistics #autisticnotbroken #AutIMFAR

Anna Mʻ@Unuhinuii
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

Deborah Budding@Nebula63
@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

Emily@mosaicofminds
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 …

Emily Paige Ballou@epballou
A1: Outcomes for older autistic adults. Communication needs of non-verbal/non-speaking people. Co-occurring conditions. #AutIMFAR

Aria Sky@mamautistic36
A1: Co-occurring conditions, effective practical support for #ActuallyAutistic (esp during transitions), & mental health support. #autimfar

Ann Memmott@AnnMemmott
#AutIMFAR Research focus; anything that looks at the positives. Would be so good not to live in 'deficit-land'. #autism

Lorcan Kenny@LorcanKenny
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 …

Mr. Rai MBPsS@carryonlearning
@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

#autchat mod@autchatmod
A2 Autism in adults. Aging. Parenting as an autistic person. Trauma. #AutIMFAR

Spectrum@Spectrum
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

homo qui vixit@endeverstar
A2 sensory differences, impact of ableism on our access to services and our health/quality of life #AutIMFAR

Hansel Asper@hanselasper
A2) Housing requirements, e.g. need for quiet housing. #autimfar

Laura Crane@LauraMayCrane
A2: Anything that actually affects #actuallyautistic ppl's day to day lives - relevance of so much research isn't clear #autimfar

Alex Plank@alexplank
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

Chris Connor@ChiDeltaWithNOR
A2: Quite a lot of social policy and practical supports #autimfar

Julia Bascom@JustStimming
A2: This one will be fun. #AutIMFAR

CRAE@CRAE_IOE
A2. The fab @robyn_steward is researching puberty & #autistic women #autimfar

⚜️Julia Joy@TheHealstorian
A2: 1. Sleep/Stress 2. Transition into adulthood 3. Housing 4. Success strategies (comparing auties w/ ourselves) #AutIMFAR

Julia Bascom@JustStimming
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

EyesLikeEels@EyesLikeEels
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

EyesLikeEels@EyesLikeEels
yes a lot of social skills programs and professionals impose heteronormative expectations on #ActuallyAutistic people #autIMFAR #IMFAR2017  https://twitter.com/timgordonjr/status/862831377426903046 …

Deborah Budding@Nebula63
This so very much #AutIMFAR  https://twitter.com/EyesLikeEels/status/862831827555364864 …

Julia Bascom@JustStimming
A2: Functional value of stims. Behavior as communication. Increased likelihood of being autistic & LGBT. #AutIMFAR

Julia Bascom@JustStimming
A2: Impact of bullying, abuse, & trauma on mental health, social comfort, QOL. Relationship between certain "treatments" and PTSD. #AutIMFAR

Julia Bascom@JustStimming
A2 Impact of motor differences on social experiences and, subsequently, social communication. Impact of gendered expectations. #AutIMFAR

Andy C-D@amcdphd
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 …

Deborah Budding@Nebula63
@amcdphd Same; issues around core stability and voluntary vs. automatic movements are super important #AutIMFAR

homo qui vixit@endeverstar
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

NOS Magazine@NOSeditorial
A2: "Aggressive behavior" isn't a symptom. It's a way for someone with communication difficulties to express something is wrong. #AutIMFAR

homo qui vixit@endeverstar
A2 also autistic language acquisition and learning to use aac etc framed as normal (just different) #AutIMFAR

Aria Sky@mamautistic36
A2: Under-researched areas - gender, sexuality, best support systems as we age, parenting while Autistic. #autimfar

Emily Paige Ballou@epballou
A2: Both language and motor linguistic and "dialect" differences. Many #autistic people can read each other better than others. #AutIMFAR

Anna Mʻ@Unuhinuii
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

Sarah Frisch@realautistic
@thinkingautism A2: Ableism. Addressing our side problems, like nutritional deficits and absorption issues. Quality of life. Transitional issues! #AutIMFAR

Ann Memmott@AnnMemmott
@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

Emily@mosaicofminds
Yes. Researchers need to learn difference between trying to take another's perspective & accurately understanding it  #autIMFAR #IMFAR2017  https://twitter.com/SueReviews/status/862831015143776256 …

Emily Paige Ballou@epballou
Also b/w realizing other person *has* distinct perspective, and ability to decipher it. #AutIMFAR  https://twitter.com/mosaicofminds/status/862854207774359552 …

Emily Paige Ballou@epballou
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

Chris Gunter@girlscientist
A3. So many disconnects in language to even talk about research, and then surprise at why people don't want to participate. #AutIMFAR

⚜️Julia Joy@TheHealstorian
A3 Research needs to stop comparing non autistics with autistics. It's like campfire apples to oranges. #AutIMFAR

Hansel Asper@hanselasper
A3) Huge gap between research findings and knowledge of policy makers. #autimfar

#autchat mod@autchatmod
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

Ann Memmott@AnnMemmott
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 …

Jax Blunt@liveotherwise
#headdesk methinks some of these researchers displaying distinct lack of imagination and extreme rigidity of thought themselves #AutIMFAR  https://twitter.com/SueReviews/status/862831613406658561 …

Spectrum@Spectrum
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

Chris Gunter@girlscientist
@Spectrum caveat: there are a lot of years of development between the toddlers studied and adults, and those years make a difference. #AutIMFAR

Meryl Alper@merylalper
A3: That autistic kids in front of screens are anti-social; media/tech provide new ways to be intimate, share space & perspective #AutIMFAR

Meryl Alper@merylalper
@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

Meryl Alper@merylalper
@slooterman Whoops, better link:  https://dmlhub.net/wp-content/uploads/files/DigitalYouthwithDisabilities.pdf … #AutIMFAR #IMFAR2017

Chris Connor@ChiDeltaWithNOR
A3: Listen to us or keep on making the same mistakes! #autimfar

Kim Elmore@KimEl
A3. Research into "effective" interventions that autistic people find not so effective and even traumatizing #AutIMFAR

Kim Elmore@KimEl
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 …

the tiniest doomwook@drdebah
@thinkingautism A3) Steven Kapp says the Theory of Mind Deficit like Dr. Damian Milton talks about, #AutIMFAR #IMFAR2017

NOS Magazine@NOSeditorial
A3: Scientific community often confuses our interests with our parents interests. We are distinct people.  http://www.thinkingautismguide.com/2017/05/you-are-not-your-child.html?m=1 … #AutIMFAR

Carol Greenburg@Aspieadvocate
A disconnect I've noticed, diagnostic criteria designed for autistic boys are incorrectly applied to girls, trans kids#AutIMFAR

Alex Plank@alexplank
A3 Studies should be designed with experiences in mind. Autistics should be involved in designing studies. #autimfar  https://twitter.com/thinkingautism/status/862830822121889792 …

the tiniest doomwook@drdebah
@thinkingautism A3) SK: the competencies of NonVerbal Autistics #AutIMFAR #IMFAR2017

Laura Crane@LauraMayCrane
A3: That autistic ppl can't make friends, or have to have loads of friends to be happy - see  http://ow.ly/54GV30bEvUZ  #autimfar

CRAE@CRAE_IOE
A3. Some disconnects between research findings & #actuallyautistic experiences: what #actuallyautistic ppl want researched #autimfar

Emily Paige Ballou@epballou
A3: The persistence of mouse research when #autistic people say we need support in housing/education/employment. #AutIMFAR

the tiniest doomwook@drdebah
@thinkingautism A3) presuming competence ACROSS the spectrum of autistic abilities! #AutIMFAR #IMFAR2017

Julia Bascom@JustStimming
A3: It's truly incredible how every strength can become pathologized if we just reach hard enough. #AutIMFAR

#autchat mod@autchatmod
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

Aria Sky@mamautistic36
A3: Where to even start? They need to incorporate our inner experiences, not just their outward observations. #autimfar

Julia Bascom@JustStimming
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

#autchat mod@autchatmod
A3 Add'l thought on harms - have seen people report that some treatments -> automatic compliance in dangerous/abusive situations. #AutIMFAR

Anna Mʻ@Unuhinuii
@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

Lorcan Kenny@LorcanKenny
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 …

Lorcan Kenny@LorcanKenny
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 …

Damian Milton@milton_damian
@thinkingautism A3: pathologised ontology, particularly around social interaction, empathy and the 'male brain' urgh. #AutIMFAR

Damian Milton@milton_damian
@thinkingautism A3: Anything to do with 'social skills' and conceptualisation of the autistic 'lifeworld' #AutIMFAR

Cos@autismage
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

Laura Crane@LauraMayCrane
It's ALL useful - often we get no feedback and then we keep getting things wrong!!! #AutIMFAR  https://twitter.com/thinkingautism/status/862832945085599744 …

Anna Mʻ@Unuhinuii
@LauraMayCrane redearchers should not be afraid to ask us; often they assume, don't listen, get it all wrong #AutIMFAR

JinJin@dianejwright
I like to replace "having left-handedness" in statements about "having autism" to point out the silliness. #Imnotbroken. #AutIMFAR

JinJin@dianejwright
...meaning, phrase your research as if you were mapping the genome rather than curing cancer, k? Because language travels. #AutIMFAR

Chris Gunter@girlscientist
A4. Most useful feedback: How to make participation in studies as easy as possible. #AutIMFAR

the tiniest doomwook@drdebah
@thinkingautism A4) Can I say everything? We know very little about the 24/7, 365 life of autistics. #AutIMFAR #IMFAR2017

Meryl Alper@merylalper
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

Chris Gunter@girlscientist
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

JinJin@dianejwright
A4 @girlscientist Good because some of us are sort of stellar at designing systems. Pick us for your team. ;) #autimfar

NOS Magazine@NOSeditorial
A4: Explain what you're researching to people. Make appropriate materials (simple English). Presume competence when explaining. #AutIMFAR

CRAE@CRAE_IOE
A4. Feedback; we want your voice - must value lived experience equally #autimfar

the tiniest doomwook@drdebah
@thinkingautism A4) SK: what autistics think are desirable outcomes! #AutIMFAR #IMFAR2017

Spectrum@Spectrum
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

the tiniest doomwook@drdebah
@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!

Andy C-D@amcdphd
@autselfadvocacy @autisticb4mmr A cognizant interviewer should be able to do this. Only way to provide "voice" to peoples responses. #autIMFAR

Aria Sky@mamautistic36
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 …

Aria Sky@mamautistic36
@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

Aria Sky@mamautistic36
@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

Kim Elmore@KimEl
@autisticb4mmr @amcdphd @autselfadvocacy YES! Just one great reason to include autistic people in research design, not just as participants!!! #AutIMFAR

Lorcan Kenny@LorcanKenny
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 …

Lorcan Kenny@LorcanKenny
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 …

Mr. Rai MBPsS@carryonlearning
@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

Damian Milton@milton_damian
@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

Chris Gunter@girlscientist
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 …

Damian Milton@milton_damian
The biggest issue in autism research - funding and funder attitudes? #AutIMFAR #IMFAR2017  https://twitter.com/suereviews/status/862835316725436416 …

#autchat mod@autchatmod
@girlscientist A5 Very encouraged to hear that your grantors valued community engagement! #AutIMFAR

EyesLikeEels@EyesLikeEels
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

the tiniest doomwook@drdebah
@thinkingautism A5) SK: Invite them to OUR conferences and share their work. #AutIMFAR #IMFAR2017

Chris Gunter@girlscientist
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 …

Deborah Budding@Nebula63
@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

Julia Bascom@JustStimming
A5: In my experience, self-advocates FLOCK to researchers doing good work. We see the enormous, life-changing value. #AutIMFAR

Andy C-D@amcdphd
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 …

the tiniest doomwook@drdebah
@thinkingautism A5) SK says: re funding - Potential lobbying to support/promote more autistic driven efforts #AutIMFAR #IMFAR2017

Chris Connor@ChiDeltaWithNOR
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

Deborah Budding@Nebula63
A5) There needs to be MUCH better links between research and clinical application #AutIMFAR

Emily Paige Ballou@epballou
I'm still hearing absolute nonsense being taught in undergrad & graduate psych programs. #autimfar

Emily Paige Ballou@epballou
Recently, for instance, that autistic people "lack the cognitive skills to deal with emotion." #AutIMFAR

Emily Paige Ballou@epballou
How can this change? I talk to the people I know in this field, but on a broad scale, this has to change. #AutIMFAR

Anna Mʻ@Unuhinuii
@epballou indeed. all psychology books iʻve listened have been written by #neurotypical, sighted, hearing people. let's change that "normal" #AutIMFAR

Julia Bascom@JustStimming
A5 But our community lacks major resources, leverage, funding. We can't bring influence to bear--*we* need support. #AutIMFAR

Julia Bascom@JustStimming
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/?

Laura Crane@LauraMayCrane
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 …

NOS Magazine@NOSeditorial
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

Julia Bascom@JustStimming
A5 And the funders & institutions with those resources often refuse to take the ethical steps we need to see in order to support. #AutIMFAR

Julia Bascom@JustStimming
A5 (me) "Put some autistic people in charge and tell us what you'll do with our stuff." (them) "...No." #AutIMFAR 2/3

Julia Bascom@JustStimming
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

Meryl Alper@merylalper
A5: I've learned so much from autistic folks on Twitter; you already support when you engage, when you share resources #autIMFAR

CRAE@CRAE_IOE
A5. More funding bodies pushing engagement but need to TRUE engagement and effective evaluation to ensure not tokenistic #autimfar

#autchat mod@autchatmod
@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

JinJin@dianejwright 
A5 @amcdphd @autchatmod Totally! I would LOVE to add to the science but, like, how? #autimfar

Aria Sky@mamautistic36
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

Aria Sky@mamautistic36
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

Anna Mʻ@Unuhinuii
@thinkingautism a5 we can hook the researchers with #ActuallyAutistic people. #AutIMFAR

NOS Magazine@NOSeditorial
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

NOS Magazine@NOSeditorial
A5: If we had funding, we'd contribute to and support research. Unfortunately, many of us are in poverty. #AutIMFAR

#autchat mod@autchatmod
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

#autchat mod@autchatmod
A5 Related to scripting: Not sure what to ask for if I approach researchers. e.g., is offering to review materials too forward? #AutIMFAR

Lorcan Kenny@LorcanKenny
A5: funders increasingly including "people with lived experience" on panels making funding decisions - this is one way to leverage #AutIMFAR

Lorcan Kenny@LorcanKenny
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

codeman38@codeman38
@SueReviews …but my degree is in comp sci / comp linguistics, so my Official Academic Knowledge about autism is only tangential at best. #AutIMFAR

Emily@mosaicofminds
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 …

Emily@mosaicofminds
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 …

Chris Gunter@girlscientist
A6. Modify training programs for different types of people, to encourage learning and inclusion. #AutIMFAR

Laura Crane@LauraMayCrane
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

#autchat mod@autchatmod
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

the tiniest doomwook@drdebah
@thinkingautism A6) Perhaps there should be directed funds from Autism Orgs specifically increase autistic researcher visibility #AutIMFAR #IMFAR2017

Meryl Alper@merylalper
Q6: I hope that making autism research more visible in spaces that scholars don't immediately think of as "about" autism helps #autIMFAR

EyesLikeEels@EyesLikeEels
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

EyesLikeEels@EyesLikeEels
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

Deborah Budding@Nebula63
A6) Most researchers & clinicians are still trained in an outdated cortico-centric model of brain development; has to be updated #AutIMFAR

Julia Bascom@JustStimming
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

JinJin@dianejwright
A6 @JustStimming BOOM! #autimfar

CRAE@CRAE_IOE
A6. Need to respect autistic researchers wishes re: disclosure of diagnosis & work to support them #autimfar

Kim Elmore@KimEl
Q6 More support of autistic students interested in entering a range of research fields: scholarships, mentoring, internships... #AutIMFAR

Carol Greenburg@Aspieadvocate
A6 Institutions need to recognize added value of Autistic study designers. Hire autistics b/c of their autism not despite it. #AutIMFAR

Hansel Asper@hanselasper
A6) One national/international website where diagnosed auties can register to volunteer for research, feedback, etc. #autimfar

NOS Magazine@NOSeditorial
A6: Financial support. Offer scholarships for autistic autism researchers. Help create mentorship and pathways to success. #AutIMFAR

Anna Mʻ@Unuhinuii
@thinkingautism a6 speak up, make noise online & in meatspace; autistic peeps will find you & fortify your words #AutIMFAR

JinJin@dianejwright
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

EyesLikeEels@EyesLikeEels
check out #autisticsinacademia posts about autistic cultural identity #autIMFAR  https://twitter.com/autisticb4mmr/status/862844039204265984 …

Damian Milton@milton_damian
@autisticb4mmr There are a growing number of people working in this area, but funding is a huge issue. #AutIMFAR

Damian Milton@milton_damian
@thinkingautism A6: Someone funding the Participatory Autism Research Collective (PARC) #AutIMFAR #IMFAR2017

Lorcan Kenny@LorcanKenny
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

Chris Gunter@girlscientist
Similar issue raised during #AutiMFAR: researchers with autism may not wish to self-identify for many reasons; must respect that. #IMFAR2017

Patricia@pgzwicker
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 …

Spectrum@Spectrum
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

Chris Gunter@girlscientist
A7. Social media has been a great help in hearing community feedback in autism research! I've learned tons here. #AutIMFAR

the tiniest doomwook@drdebah
@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 …

Laura Crane@LauraMayCrane
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

the tiniest doomwook@drdebah
@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

Meryl Alper@merylalper
A7: Most studies I read on autism/kids/tech are majority abt middle/upper-class white boys, yet make universal claims. Do better! #autIMFAR

Meryl Alper@merylalper
@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

Julia Bascom@JustStimming
A7 There's a definite positive trend. More positive/accurate framing, more acknowledgement of our voices & of past mistakes #AutIMFAR 1/2

Julia Bascom@JustStimming
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

NOS Magazine@NOSeditorial
A7: Researchers confuse embracing neurodiversity with not wanting to talk about actual problems. #AutIMFAR

Emily Paige Ballou@epballou
@NOSeditorial {screams into the abyss} "This!!!!!!!!!!!!" #AutIMFAR

Aria Sky@mamautistic36
Yes! Acceptance and neurodiversity don't mean "doing nothing" about things that are issues. #AutIMFAR  https://twitter.com/NOSeditorial/status/862839116693680128 …

Anna Mʻ@Unuhinuii
@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

Damian Milton@milton_damian
@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

the tiniest doomwook@drdebah
@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

the tiniest doomwook@drdebah
@thinkingautism A8) The willingness to autism researchers to LISTEN to baby sibs when we come in and wanna do better. #AutIMFAR #IMFAR2017

Chris Gunter@girlscientist
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

JinJin@dianejwright
A8 @theoriesofminds Think of stimming as free valium. #autimfar

Deborah Budding@Nebula63
@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

Chris Gunter@girlscientist
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

EyesLikeEels@EyesLikeEels
The lack of communication and progress is just... beyond words really #AutIMFAR  https://twitter.com/thinkingautism/status/862837896868356097 …

Spectrum@Spectrum
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

the tiniest doomwook@drdebah
A8) SK says: confirmation biases can create rigidities and rationalization in both communities. #AutIMFAR #IMFAR2017

CRAE@CRAE_IOE
A8. Researchers: Lack of understanding and realisation you are working with REAL people!! #autimfar

Deborah Budding@Nebula63
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

Kim Elmore@KimEl
Q8. << [not sure if that number is right now, but 8 in an hour challenges my writing] Collaboration will require respect of... #AutIMFAR

NOS Magazine@NOSeditorial
Q8: I'm often surprised by how little professionals who've spent their careers working on autistic people actually know about us. #AutIMFAR

Hansel Asper@hanselasper
Q8. Researchers & fellow auties I met were so knowledgeable re psychology & autism - huge contrast with my experience of doctors. #autimfar

Laura Crane@LauraMayCrane
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

Carol Greenburg@Aspieadvocate
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

EyesLikeEels@EyesLikeEels
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

#autchat mod@autchatmod
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

Meryl Alper@merylalper
Q9: I think it's an ecology of disconnection: autism research, clinical practice, informal and formal learning spaces, communities #autIMFAR

Chris Gunter@girlscientist
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

Spectrum@Spectrum
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

JinJin@dianejwright
Q9 Drs read reports to get 411 about "disease". There's only the language of reports to change attitudes. Still pathologized. #autimfar

Deborah Budding@Nebula63
@thinkingautism A9) Differences in terminology, ableist approaches, mind-body gulf, to name a few #AutIMFAR

Julia Bascom@JustStimming
A9 Autistic ppl are adults for the vast majority of our lives. But adults are barely a footnote in the overall research agenda. #AutIMFAR

Ann Memmott@AnnMemmott
Especially adults who don't fit the 'uber-geek'/violent myths, or those who are LGBT+ #AutiMFAR  https://twitter.com/JustStimming/status/862840487551664131 …

Emily Paige Ballou@epballou
A9: Once had to try to make appt. w/ researcher who had no voicemail, no email. I mean, srsly? #autimfar

#autchat mod@autchatmod
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 …

the tiniest doomwook@drdebah
@thinkingautism A9) not putting into practice/translating our science knowledge into reality in real time. I.E. autistic designed waiting rooms #AutIMFAR

Anna Mʻ@Unuhinuii
@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

Anna Mʻ@Unuhinuii
@SueReviews could not agree with you more! i hate medical environments, being touched & loud, bright indoor places #autimfar

Laura Crane@LauraMayCrane
A9 So that research in lab translates to real world, need input from autistic ppl and professionals throughout research process #autimfar

Chris Connor@ChiDeltaWithNOR
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

Anna Mʻ@Unuhinuii
@thinkingautism a9 being even excluded from research because of disability! clinical practices also often not accessible (online/meatspace) ♿️ #autimfar

Emily Paige Ballou@epballou
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

EyesLikeEels@EyesLikeEels
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 …

Carol Greenburg@Aspieadvocate
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

JinJin@dianejwright
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

Aria Sky@mamautistic36
@dianejwright Yes, we can. So many years of it... And just reading this made me start to tear up. #AutIMFAR

Hansel Asper@hanselasper
Q9. Need a lot more than 130 character to answer that - could write a book on it!! #autimfar

Anna Perng@annaperng
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

Damian Milton@milton_damian
@thinkingautism A9: where to start!?! #AutIMFAR

EyesLikeEels@EyesLikeEels
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 …

codeman38@codeman38
A9: I get so frustrated at the sheer amount of autism research that doesn’t even *consider* auditory/visual processing issues… #AutIMFAR

codeman38@codeman38
A9 …given how significantly sensory processing has played into my own experience as an autistic person. #AutIMFAR

codeman38@codeman38
…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

#autchat mod@autchatmod
A10 Would be great to have research on what self-advocacy is most effective in navigating systems (e.g. healthcare) #AutIMFAR

Kim Elmore@KimEl
autistic researchers & participants, active listening & willingness to accept differences, communication & sensory accommodations #AutIMFAR

Kim Elmore@KimEl
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

Chris Gunter@girlscientist
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

Meryl Alper@merylalper
Q10: Love to know from #actuallyautistic adults how they think kid-version of them would have wanted to participate in research #autIMFAR

#autchat mod@autchatmod
A10 #AutIMFAR  https://twitter.com/theoriesofminds/status/862810726682906624 …

JinJin@dianejwright
A10 The lack of interest in hidden Autistics. Once we know, you should learn how we went unseen. We can tell you! #autimfar

the tiniest doomwook@drdebah
@thinkingautism A10) SK says: More practical, contextualized research with cross disability applications. science/research behind services. #AutIMFAR

Chris Gunter@girlscientist
A10. for example, would you like a newsletter about the results? A seminar with the researchers? To read the paper? What's best? #AutIMFAR

Aria Sky@mamautistic36
@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

Aria Sky@mamautistic36
@girlscientist Having multiple options and mediums for accessing study results would be fantastic! Bc we're all different #AutIMFAR 🙂

the tiniest doomwook@drdebah
@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

Chris Connor@ChiDeltaWithNOR
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

NOS Magazine@NOSeditorial
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

Carol Greenburg@Aspieadvocate
I have spent so much of my life masking my autism, I'd like 2 spend the rest learning how to unpass #AutIMFAR

#autchat mod@autchatmod
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

Johanna Steele@Johanna_Steele
Indeed. Unmasking leading to a more authentic life and better wellbeing. #AutIMFAR #IMFAR2017 #MentalHealthAwareness  https://twitter.com/Aspieadvocate/status/862842618429947904 …

Emily Paige Ballou@epballou
A10: Cost and undue difficulty of getting evaluated for adults. #autimfar

Anna Mʻ@Unuhinuii
@epballou "here are some pictures of frogs..." 🙄 the same tests for white boys #AutIMFAR

NOS Magazine@NOSeditorial
A10: I'd really love to have more #ActuallyAutistic science writers for NOS Magazine. #AutIMFAR

JinJin@dianejwright
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

NOS Magazine@NOSeditorial
@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

NOS Magazine@NOSeditorial
@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

Emily Paige Ballou@epballou
A10: Issues that I don't often read about in research that are HUGE challenges for me... #autimfar

Emily Paige Ballou@epballou
-Exposure anxiety -Selective mutism -Alexithymia -Auditory processing issues #AutIMFAR

Emily@mosaicofminds
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 …

Anna Mʻ@Unuhinuii
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 …

Emily@mosaicofminds
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 …

codeman38@codeman38
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 …

Emily Paige Ballou@epballou
That no one else thinks or feels like I do is a lesson I had down pat from toddlerhood. #AutIMFAR

Emily Paige Ballou@epballou
Autism researchers have said in past that #autistic kids see other people as furniture.... (1) #AutIMFAR  https://twitter.com/epballou/status/862861394961719296 …

dkmnow@dkmnow
@epballou Old psych theory of "reflected appraisal": 1) People keep telling you that you are [x], and treat you as such... #autimfar

dkmnow@dkmnow
@epballou ...and pretty soon, 2) you start seeing yourself as [x]—and behaving as such. #autimfar

Emily Paige Ballou@epballou
A10: {yells into the void again} *autism and pregnancy!!!!!!* #AutIMFAR

Emily Paige Ballou@epballou
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

the tiniest doomwook@drdebah
#AutIMFAR closing with #ASL clapping, my heart is singing!! #IMFAR2017

Spectrum@Spectrum
Thank you @thinkingautism and all participants for an excellent inaugural #AutIMFAR!

Deborah Budding@Nebula63
@thinkingautism Thanks for including me! It was amazing #AutIMFAR

Laura Crane@LauraMayCrane
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

CRAE@CRAE_IOE
Thank you so much @shannonrosa for organising such a great chat - what a room of fab people! #autimfar

JinJin@dianejwright
Thanks all. DM me with questions. You know, to #talktoautistics. :) #autimfar

Julia Bascom@JustStimming
.@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 …

Kim Elmore@KimEl
@thinkingautism Thank you and the participating researchers & journalists for hosting #AutIMFAR chat. Now to go back & read others... not able to during...

NOS Magazine@NOSeditorial

Thank you, #AutIMFAR! And get excited about our upcoming coverage of #IMFAR2017.

NOS Magazine@NOSeditorial

If any #AutIMFAR participants are interested, please help support NOSmag, neurodivergent journalism #IMFAR2017  https://www.patreon.com/NOSmag 

  

Hansel Asper@hanselasper

Huge thanks to organisers & contributors. #autimfar

#autchat mod@autchatmod

So many good tweets. Can't keep up with volume to RT everything! #AutIMFAR

Mike Grosso@mgrossoauthor

Enjoying reading #AutIMFAR. Lots of good answers here.

forfoxessakes@forfoxessakes

Thank you all participating in #AutIMFAR chat. I'm learning a lot.

Andy C-D@amcdphd

Sorry to miss the last half of #AutIMFAR; too many great convos were going on to keep up.

Andy C-D@amcdphd

Great chats yesterday for@#AutIMFAR & #IMFARChat. It was awesome connecting with everyone; I hope it's in person @ #IMFAR2018.

AutismResearchAllies@AuRA_Research

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 …

Kit Albrecht@KitAlbrecht

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.

Chris Gunter@girlscientist

Discussion at our table #IMFAR2017: how do we find people w/autism in our areas to help design research studies? #AutIMFAR

RealSocialSkills@rsocialskills

Some of the autism research that’s needed is literature review of other fields for applicable strategies. #AutiMFAR

RealSocialSkills @rsocialskills

Eg: apraxia that interferes with movement for communication isn’t unique to autism–what’s been tried for other syndromes? ?#AutiMFAR

RealSocialSkills@rsocialskills

Autism research happens in a behaviorist silo but it doesn’t have to. Not all conditions have this research culture problem. #AutiMFAR

RealSocialSkills@rsocialskills

For Rhett syndrome, interest in teaching intentional movement for communication is treated as legitimate. #autIMFAR

RealSocialSkills@rsocialskills

In the autism world, it’s very hard to talk about movement issues without being treated as a quack. This needs to change. #AutiMFAR

RealSocialSkills@rsocialskills

And one reason it needs to change is that there’s a staggering amount of quackery surrounding autism and movement. #AutiMFAR

RealSocialSkills@rsocialskills

The presumption that only ABA is “evidence based” creates a fertile environment for dangerous quackery. #AutiMFAR

  

RealSocialSkills@rsocialskills

If you tell people that being “evidence based” means ignoring reality in favor of ABA, you’re teaching them to devalue research. #AutiMFAR

RealSocialSkills@rsocialskills

Operant conditioning is not a sufficient explanation of the impairments autistic people have. #AutiMFAR #ActuallyEvidenceBased

RealSocialSkills@rsocialskills

When a condition gets declared to be 'not actually autism, but something else', the research tends to get a lot better. Why? #autIMFAR

RealSocialSkills@rsocialskills

Autism research is a cesspool of lack of rigor and it *doesn't have to be*. #autIMFAR.

RealSocialSkills@rsocialskills

"Not evidence-based" gets used to mean both "proven ineffective" and "not tested in studies". We need to stop conflating. #autIMFAR

RealSocialSkills@rsocialskills

"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

RealSocialSkills@rsocialskills

Something I’d like to know more about is risk factors for the progressive form of autistic movement disorders. #AutIMFAR

Damian Milton@milton_damian

@CRAE_IOE @thinkingautism @shannonrosa Main themes of #AutIMFAR #IMFAR2017 Ableism, Double Empathy problem / better understanding, interventions for non-autistics, social supports

Damian Milton@milton_damian

@CRAE_IOE @thinkingautism @shannonrosa #IMFAR2017 #AutIMFAR Benefits from being autistic, gender fluidity, experience not just observation of behaviour, harms, social change...

Damian Milton@milton_damian

@CRAE_IOE @thinkingautism @shannonrosa #IMFAR2017 #AutIMFAR Disconnect with practice, Design, Applying all of the above to work with less verbal autistic people.

Damian Milton @milton_damian:

@CRAE_IOE @thinkingautism @shannonrosa Things one doesn't see in #AutIMFAR #IMFAR2017 social communication, social skills, behaviour modification, genetic research, early int.

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