autisticenough.bsky.social
Autistic parent of autistic artist, athlete etc. about whom I’ll never stop kvelling. Editor at @thinkingautism.bsky.social. Fan of democratic governance & real science. U should read Steve Silberman’s NeuroTribes. Love gardens & teatime.
340 posts
588 followers
1,104 following
Getting Started
Active Commenter
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Glad you made it home safe, Dr. Fletcher.
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Agreed. This is exactly what we've aimed to do in the @aims2trials.bsky.social Autism Representatives group & we've seen hugely positive change as a result, which I think is also impacting positive change at #INSAR2025
#AutINSAR
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A7: Dena Gassner says that there are a lot of people who have good hearts and then realize that they've done harm. And there's no support for them to be supported through growth. We need to be more welcoming and forgiving, and provide a safe landing space.
#AutINSAR #INSAR2025
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You can find our SDM stuff here: autisticadvocacy.org/actioncenter...
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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
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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
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Girolamo: She focuses on how to get autistic people with high support needs services and supports, full stop.
Sutherland: An issue is that people are speaking in slightly different languages when it comes to #neurodiversity and autistic people with highest support needs.
#INSAR2025
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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
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Blasko and Jaswal: Many autistic people with the highest support needs have not been provided with appropriate AAC (augmentative and alternative communication).
#INSAR2025
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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
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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
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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
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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
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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
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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
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And w/o denigrating the urgency of HSN people’s needs, mostly speaking autistics like me lose speech more frequently than non-autistics may think. However short my periods of speech loss may be, at those times my self-advocacy skills dip too.
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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
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Sutherland: However, both staff and supported people had friends amongst the other group. Successful communication was an important part of friendship and rapport.
#INSAR2025
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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
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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
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Sutherland: On Fear and Control: Some staff would lose their curiosity about appropriate support techniques and ended up "running through the motions."
#INSAR2025
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Sutherland: Some subjects' hand flapping can mean happiness or distress.
For more information on the study, go to heasutherland.com.
#INSAR2025
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Sutherland: 21 Staff participants were usually white, female, working class, left education at age 18 and were neurotypical.
The 12 supported autistic people were mostly white, male, working class, 1:1 support with additional diagnoses.
#INSAR2025
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Sutherland: So they wanted to characterize communicative interactions between staff and supported people.
#INSAR2025
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Sutherland: Support people for autistics with HSNs are unfortunately unlikely to be autistic.
#INSAR2025
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Now Dr. Holly Sutherland, an AuDHD multiply disabled academic, talking about communicatively resourceful, interpretatively curious" (mis)communications in social care settings for autistic people with high support needs. So basically what some term #ProfoundAutism.
#INSAR2025
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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
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Ryan: There is currently not a tool for helping staff/caregivers to clearly communicate with autistic people with high support needs. So Ryan's team created a toolkit/tip sheet.
#INSAR2025
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Ryan: Always be kind and respectful. Allow autistic people to say yes, and also to say no. Be mindful of deficit-based and dehumanizing language that contributes to stigma.
#INSAR2025
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Ryan: Also, don't make assumptions. Just because an autistic person can do something one day doesn't mean they can do it the next day. Presume competence.
#INSAR2025
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Ryan: The approaches included these principles: Getting to know the autistic person, including signs of dysregulation and how they best re-regulate.
#INSAR2025
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And please remember that most autistics have a history of being shamed 4 dysregulation. I suspect many of us, particularly elders, know on some level when we r becoming dysregulated, but go into denial or push through anyway b/c of the shame we have internalized over our dysregulation. #INSAR2025
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Ryan: Wanted to know what implementation of potential strategies would look like from the perspectives of autistic people as well as support staff and clinicians.
#INSAR2025
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Ryan: Worked on developing an Experience-Based Co-Design approach (EBCD). The project included autistic and non-autistic participants.
#INSAR2025
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Ryan: A crucial component is creating in-the-moment choice-making tools that support immediate decisions for autistic people with HSNs.
#INSAR2025
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Ryan: How do we design a toolkit of practical resources that staff/caregivers can use to promote autonomy for autistic people with high support needs?
#INSAR2025
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One important avenue for discussing autistic people’s autonomy in depth is exploring the Supported Decision Making Movement. Autistic Self Advocacy Network offers some helpful material on this subject, including some material in an Easy Reading format.
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Next, Dr. Jackie Ryan @proudmum95.bsky.social, prerecorded. She is an autistic autism researcher. She is talking on Promoting the autonomy of autistic adults with high support needs in daily life choices.
#INSAR2025
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Girolamo: CBPR is rare in autism research, especially with autistic people as parents. This is not OK as >60% of autistics have some form of language impairment.
#INSAR2025
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Girolamo: Interpersonally, Structural Language Impairment can impede relationships, social interactions, community access (esp. for people who require 1:1 care, and especially after they access school), and societal inclusion.
#INSAR2025
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Girolamo: The focus is also on racialized folks within the target population.
What is structural language impairment? Refers to difficulties in among other things syntax. It can be difficult to handle everyday environmental demands, especially as people age.
#INSAR2025