A critique of “consensus” in autism research—how inclusion becomes performance, power remains untouched, and cure rhetoric persists. Yet amid it all, autistic-led scholarship rises—quiet, defiant, building truth brick by brick open.substack.com/pub/autside/...

Steve Silberman is so pissed about this Tylenol bullshit that he's screaming from the afterlife he didn't even believe in. Increased rates of autism are due to testing, a broadened definition, and greater awareness. It's not vaccines. It's not Tylenol. It's like his work never happened.

Three incredible books and writers, for when you allow yourself to step back from screaming at the world: Death of the Author, by @nnedi.bsky.social. The Book of Love, by @kellylink.bsky.social Indiginerds, edited by @alinapete.bsky.social What are your current three "take me away" reads?

Explore 10 key ideas for neuro-affirming practice. Building neurodivergent competency means creating safety & belonging. Inspired by David… https://autisticrealms.com/creating-autistic-safety-and-belonging-10-ideas-for-neurodivergent-competency/?utm_source=bluesky&utm_medium=jetpack_social

My research, "‘It's Really Who They Are and What They Want’: Staff Perspectives on Supporting Autonomy for Autistic Adults With Intellectual Disabilities", has been published! Read it here: doi.org/10.1111/jar.... #publishedarticle @wileyinresearch

To anyone who is NOT #autistic, you need to know this. A person can be an #autist AND an #arsehole, but one does not cause the other! This is true no matter what defence lawyers (or the gutter press) tell you. #Autism does not make you saint or sinner; you do that yourself. #GreggWallace #ElonMusk

Repost if you’re still calling it the Gulf of Mexico. ✋🏽

With @michealsandbank.bsky.social @shanclapoint.bsky.social @jhinsonwilliams.bsky.social @yueyangshen.bsky.social Ruoxi Guo, and Tiffany Woynaroski

We conclude that, because of a lack of appropriate conceptualization of what constitutes "problem behavior" and poorly validated measures, we know very little about how interventions might support autistic children who engage in behavior that could be harmful to themselves or others. 4/4

and all but one measure mixed together behaviors that were inherently harmful (e.g., aggression) and behaviors that were nonnormative but not inherently harmful (e.g., hand flapping). 3/4

and only 8% of studies defined the behavior construct they targeted. For the most common "problem behavior" measures, only two were validated along six different validation dimensions in autistic children, 2/4

Curious about how autism intervention researchers define and measure "problem behavior"? We examined 102 intervention studies with young autistic children and found that only 1/3 of studies give a reason for targeting the behavior they aim to reduce, 1/4 acamh.onlinelibrary.wiley.com/doi/10.1111/...

~5 Manipulation Tactics Premier Danielle Smith Uses These tactics appeared in Danielle Smith's May 5th speech to Albertans.

Really thrilled to be able to announce this! Writing this with Robert has been a huge honour and I can’t wait to hear what readers think of it.

"I want parents to learn what disability advocates taught me, what I wish I had known before my son’s diagnosis: that autistic people have always been part of our societies, & are valuable human beings who deserve unqualified love, acceptance, & access to supports." www.buzzfeed.com/shannonrosa/...

@drstevenkapp.bsky.social's panel at International Society for Autism Research on Neurodivergence-affirming research practices for autistic people w/ high support needs illustrates relevance of neurodiversity framework for people w/ significant disabilities - an important principle of our MSc course

Question: How can we include autistic people with high support needs who also have motor difficulties that can interfere with some forms of successful AAC use? Sutherland: Simpler methods like PECs can help. But important to acknowledge that some people don't yet have successful AAC. #INSAR2025

An excellent website full of Holly's excellent PhD work, presentations & publications:

Sutherland: when they've talked to care providers, they find out via that they actually do share goals with the #neurodiversity paradigm. And then the research speaks for itself, because it's addressing those shared goals. #INSAR2025

Completely agree with Blasko and Jaswal: Access to AAC is a human rights issue for non-speaking and semi-speaking Autistic people. #INSAR2025

Now Q&A (though we have to leave in 5 min for #AutINSAR prep, darn it). First question: How do we overcome the manufactured divide of #ProfoundAutism? #INSAR2025

Blasko: (using AAC in real time) I hope the questions are kind, and I have strong feelings but I am respectful [*got up to pace*] of all perspectives. #INSAR2025

Blasko using AAC: "I hope the questions are kind, and I habe strong feelings, and I am respectful of all perspectives." #INSAR2025

Jaswal and Blasko highlight the importance of ensuring that no autistic person with high support needs is left behind in research. THIS is the discussion that I would have expected in a SIG about research priorities for autistic people with HSN. We need more authentic representation. #INSAR2025

Chat GPT state that participation in research involves: - communication skills - critical thinking - collaboration - self-advocacy Therefore, autistic people with HSN need to have formal & informal opportunities to learn & develop these skills to address the gatekeeping that exists. #INSAR2025

Jaswal highlights the potential harm that not including autistic people with HSN can (and does) have. Blasko & Jaswal highlight that there is a need for going further than accommodations, but true involvement is providing opportunities to enable HSN autistic people to participate. #INSAR2025

Now hearing from Grant Blasko & Vikram Jaswal, who are the discussants for this panel. Opening the discussion by highlighting why it is important that there is a panel on neuroaffirming and inclusive research practices for autistic people with HSN. #INSAR2025

Blasko and Jaswal: To truly participate in research, autistic people with HSNs, we need to support their: Communication skills Critical thinking Collaboration Self-advocacy #INSAR2025

Blasko and Jaswal: Important to presume competence, have intentional and ongoing conversations about power sharing, and ensure that accessibility is "baked in" to all research efforts involving autistic people with the highest support needs. #INSAR2025

Blasko and Jaswal: Questions & commentary: How do we make CBPR (community based participatory research) possible for autistic people with the highest support needs? Because it's the right thing to do morally, ethically, and scientifically. #INSAR2025

Blasko and Jaswal: Why is this panel happening? Well, some people here don't understand how autistic with HSNs can participate, and don't understand the #neurodiversity paradigm. Previous panelists talked about how to include autistic people with HSNs successfully in research. #INSAR2025

Now: AAC user and UW college student Grant Blasko and Dr. Vikram Jaswal. Blasko, via AAC: He is trying to broaden his understanding of complex issues, grateful to be included and for support of fellow panel members. Jaswal works at UVA on communication in folks like Blasko. #INSAR2025

Blasko and Jaswal: Many autistic people with the highest support needs have not been provided with appropriate AAC (augmentative and alternative communication). #INSAR2025

Blasko: We talked for a long time about the barriers to inclusion for autistics with HSNs. Researchers need to develop the skills to do it. We need less gatekeeping, and to dismantle that power imbalance. Researchers needs to provide better access. I hope we are patient with each other. #INSAR2025

Sutherland: Who gets to be the expert? Who gets to speak for the autistic people? Sustained self-advocacy is often very difficult for autistic people with high support needs. Very important to center the #neurodiversity and double empathy problem paradigms. #INSAR2025

Sutherland: Both parties needed to adapt their communication styles and preferences to accommodate each other for successful engagement. Sometimes staff adopted more autistic styles of communication and behavior as a result. #INSAR2025

"Who gets to be the expert" @heasutherland.com discusses the dilemma about who the perceived expert is. Sustained self-advocacy often difficult for autistic people w HSN. - long-term staff often seen as experts - new staff have new ideas - autistic people have autism-specific insight #INSAR2025

"Supported people clearly had people they preferred working with certain people and vice versa." Successful communication was an important part of friendship & rapport. Many supported people would adapt their communication to be understood. Adapting communication styles to accommodate each other

Sutherland: So even though the supported people provided many different channels of communication, the staff did not always recognize those openings. And miscommunications ensued, especially when autistic "behaviors" were involved. #INSAR2025

Sutherland: Sometimes communication difficulties were due to staff's normative assumptions about communication. So if someone could speak a bit they assumed they should be able to speak more, instead of trying to use AAC or other communication methods. #INSAR2025

"Sometimes communication difficulties were down to the staff's use of neuronormative expectations." This resulted in staff missing communication from supported people, which meant that communication was not understood. Another factor is "running through motions" so not noticing cues. #INSAR2025

Participants: - 21 staff members: mostly white women, working class, age 18+, many neurotypical but some autistic people - 12 supported people: mostly white, male, working class, receiving 1:1 support. Examples created based on profiles of various people observed during study. #INSAR2025

Sutherland: So they wanted to characterize communicative interactions between staff and supported people. #INSAR2025

Sutherland: Support people for autistics with HSNs are unfortunately unlikely to be autistic. #INSAR2025

Methods: - ethnography study that was minimally invasive to day-to-day routines and flexible to the needs of each individual - participant observation - formal and informal interviews of staff - participation in day-to-day routines - shadowing staff - grounded analysis #INSAR2025

Now hearing the fantastic @heasutherland.com present on her PhD research looking at communication in social care setting for autistic people with high support needs. Holly opens by highlighting that there is a gap of research in this area. #INSAR2025

Results: A toolkit was created using feedback, an autistic graphic designer commissioned to design the toolkit (will be avaliable once ready). Co-designed, neuro-affirming toolkit. Absolutely fantastic! Cannot wait for the resources to be available & I'd love to chat, @proudmum95.bsky.social!

Ryan: It's crucial for those supporting autistic people with high support needs to focus on trust, clear communication, and mutual respect. You can engage with Dr. Ryan at @proudmum95.bsky.social. #INSAR2025