"There are problems with the medical system, of it being deficit-only and that the professional and outsider know best. But also, there are benefits of diagnosis, and it’s the system we have.”
Holistic classification system would be more accurate, helpful: onlinelibrary.wiley.com/doi/full/10.... /3
"Autism is a developmental disability. It affects how ppl move, sense, perceive, think &...communicate...can bring strengths too—for example, some autistic ppl w/ less speech have perfect pitch...Better understanding their unique characteristics can help autistic ppl get the support they need..." 2/
Interviewed for Autism Acceptance Month for BrainWise digital magazine of National Academy of Neuropsychology: for autistics w/ significant disabilities, goals should be accessible communication, community living, meaningful relationships, supported decision-making
brainwisemedia.com/understandin...
Reminder that comments re U.S.'s IACC are due at 5 pm ET today! It's also anniversary of my paper on autism as a lifelong sensory-movement neurodivergence, the last paper in its Topic yet most viewed - thank you! Also much more scientific than IACC - 600+ sources.
www.frontiersin.org/journals/int...
An opportunity to get your voice heard!
The U.S.'s Interagency Autism Coordinating Committee has been rescheduled to Tuesday, 28th April at 9-5 pm, Eastern Time (hybrid): iacc.hhs.gov/meetings/iac...
For new comments, public comments are due this Tuesday at 5 pm ET. iacc.hhs.gov/meetings/pub...
Graphic with a light gray to white horizontal gradient background. Text reads, "Many autistics speak late, a little, or not at all. This is called being “autistic with speech divergence” (A-SD). "A-SD people, even with intellectual (dis)abilities, often have strong visual and hearing skills. These skills are key to how A-SD folks understand and communicate—but are not always recognized in the usual assessments (e.g., IQ testing). "ND-informed assessments & supports can build on A-SD strengths instead of trying to “fix” A-SD autistics." Smaller text in the lower left reads, "Steven K. Kapp &Juliette Gudknecht tinyurl.com/AutisticSpeechDivergence" The Thinking Person's Guide to Autism logo is in the lower right corner.
Focusing on the visual & auditory skills of autistics with speech divergence (A-SD)—including those w/ID—can help them demonstrate intelligence, learn to read, and acquire communicative language skills. @drstevenkapp.bsky.social & @juliettegudkne1.bsky.social
onlinelibrary.wiley.com/doi/full/10....
I've written a brief post about our new book, why its important to me, and what we hope to achieve with it.
open.substack.com/pub/neurodiv...
Holding the small book Neurodiversity: A Very Short Introduction by Robert Chapman and Sue Fletcher-Watson.
New arrival by @drrobertchapman.bsky.social & @suereviews.bsky.social, a brief authoritative text. As far as we know, 1st general academic introduction to neurodiversity studies as distinct field w/ its own body of scholarship. Recommended!
Full disclosure: I reviewed it, applying my due diligence.
I am sorry you had that experience. Yes, whether masking or simply "presenting" differently, autistic women and AFAB individuals are being biased against in diagnostic instruments and by clinicians.
And now people like Uta Frith are outrageously trashing masking, late-diagnosed autistic women, etc.
Other reasons include camouflaging; some autistic women report higher traits than others do: www.frontiersin.org/journals/int.... Adults seeking diagnosis may report similar traits regardless of outcome, but those who do get diagnosed have higher ADOS scores:
journals.sagepub.com/doi/abs/10.1... 8/
We know from studies demonstrating Damian Milton's double empathy problem autistic ppl are often misread, including our facial expressions, especially when naturally "evoked" because we may use our faces differently:
onlinelibrary.wiley.com/doi/10.1002/... onlinelibrary.wiley.com/doi/10.1002/... 7/
Reasons for mismatch of report for autistic ppl include disconnects between our body language & emotions for example, which have been noted since the beginning of autism (e.g. by Georg Frankl's observations since the 1920s & papers beginning in the 1930s): www.thetransmitter.org/spectrum/the... 6/
Mismatches for report include this new study
link.springer.com/article/10.1...
and the one below and this one (no relationship between self-reported autistic adults and ADOS scores of clinical observation/interaction: www.nature.com/articles/s44...).
5/
One reason why diagnosis continues to be controversial is mismatch between autistic people's own and others' experiences. There are multiple studies showing poor agreement between autistic people's (including officially diagnosed adults') self-reports vs informant reports or clinical observation 4/
Heather Brown and I for INSAR (the International Society for Autism Research) recognized the poster for this paper as scoring exceptionally for our topic area on the first-person perspectives of autistic people.
journals.sagepub.com/doi/full/10....
3/
New paper reports overlaps & distinctions btwn autism & borderline personality in women & adults assigned female at birth (sometimes people meet criteria for one or the other or both, or of course neither*):
journals.sagepub.com/doi/full/10....
*Whether BPD is ever valid is beyond scope of this post
Happy Easter to those who celebrate, and there is indeed a "spring" in understanding of autism, including its co-occurrence with other diagnoses. THREAD 1/
Rather than focusing on “‘fixing”’ spoken communication, @drstevenkapp.bsky.social & Juliette Gudknecht argue for approaches that build on autistic strengths (including language in other forms where possible). This means creating ND assessments and supports:
onlinelibrary.wiley.com/doi/full/10....
As harmful autism disinformation campaigns go, grievance parents‘ attempt to break off “ #profoundAutism” as a separate diagnosis via smearing #neurodiversity advocates is notable—mostly for its spitefulness. Select observations by @embergreen.bsky.social:
thinkingautismguide.com/2026/03/debu... 1/
Also the first Autism Acceptance Day for @drstevenkapp.bsky.social’s paper on how sensory and movement differences contribute to autism across the lifespan, related perception and neurological processing, their impacts, and means of supporting or addressing them.
www.frontiersin.org/journals/int...
Neurodiversity movement: autism is difference *&*disability. 1st Autism Acceptance Day for this paper showing strengths eg enhanced auditory perception can contribute to challenges eg speech divergence. *Holistic classification* needed for assessment, support. onlinelibrary.wiley.com/doi/full/10....
White background. There’s a blue puzzle piece with an orange circle crossing it out. Text reads: Before you donate to Autism Speaks, Consider the facts.
White background. Text reads: Very little money donated to Autism Speaks goes toward helping autistic people and families. Only 1/10 of 1% of Autism Speaks’ budget goes towards the “Family Service” grants that are the organization’s means of funding services. Autism Speaks spent more than 188x as much on fundraising. They spent 16x as much on Facebook/ Instagram ads alone. Although Autism Speaks has not prioritized services with a practical impact for families and individuals in its budget, its rates of executive pay are the highest in the autism world: some salaries exceed $415,000 a year. Autism Speaks talks about us without us. Autism Speaks has only 2 autistic people out of a total of 27 individuals on its Board of Directors. By contrast, 16 out of 27 board members represent major corporations, including current and former CEOs and senior executives of AutoZone, Goldman Sachs, SoundCloud, White Castle, MasterCard, and S.C. Johnson & Johnson.
White background. Text at the top reads: Autism Speaks’ Budget. Source: Autism Speaks 990 Non-Profit Tax Exemption Form, 2024* There’s a pie chart with the following sections: 49.4% “Awareness” & Lobbying, 22% Fundraising, 19.4% Research, 9.1% Misc., and 0.1% Family Services. Text at the bottom reads: *“Awareness & Lobbying” figure derived from reported program service expenses on Part III, 4a & 4c less the total amount awarded in family service grants (“Family Services”) and misclassified research grants as reported in Part III, Line 4A; “Research” figure derived from reported program service expenses in Part III, 4b plus the misclassified research grant amount; “Fundraising” figure derived from reported expenses, line 25(D) in Part IX.
Blue background with white text that reads: Instead, donate to organizations that help autistic people: Autistic Self Advocacy Network (ASAN) provides support, community, and public policy advocacy, by and for people on the autism spectrum. autisticadvocacy.org Autistic Women and Nonbinary Network (AWN) seeks to share information which works to build acceptance and understanding of disability, while dispelling stereotypes and misinformation which perpetuate unnecessary fears surrounding an autism diagnosis. awnnetwork.org Self Advocates Becoming Empowered (SABE) works to ensure that people with disabilities are treated as equals and are given the same decisions, choices, rights, responsibilities, and chance to speak up to empower themselves as everyone else. sabeusa.org
Very little money donated to Autism Speaks goes toward helping autistic people and families. This #AutismAcceptanceMonth, considering supporting groups by and for autistic people!
autisticadvocacy.org/considerthef...
Happy Autism Acceptance Day! I came to UK partly as it seemed to be exceptionally accepting of autistic ppl, as research among explored countries supports:
journals.plos.org/plosone/arti... Autism acceptance relates to lower depression. Yet UK Government wants to strip ppl of diagnoses & benefits.
Pulse, magazine for UK primary care, has practiced Autism Awareness rather than Acceptance Month by promoting a path toward fewer diagnoses to be "aware" of.
Three autistic & 3 non-autistic researchers commented on report. All non-autistics, no autistics quoted.
www.pulsetoday.co.uk/news/clinica...
I've got too many thoughts from today. I need to process.
What I can share is our community researcher zine:
A Guide for Allies to Improve Trans+ Access to Healthcare
Useful for people who work in any area of health and social care!
heyzine.com/flip-book/95...
Do you want to learn more about Understanding Neurodiversity and Supporting Neurodivergent People? @drstevenkapp.bsky.social is holding a Webinar on April 30, 2026 at 4 PM GMT (UK time). It's online, and it's free!
www.port.ac.uk/news-events-... #autism #neurodiversity
Presenting my research on neurodiversity as a concept, framework & movement w/ implications for diagnosis, identity, support. A webinar ultimately for @uoppald.bsky.social, & like the session itself, that MSc has recorded sessions. MSc is also competitive priced - under $10k Year 1, under $5k year 2
DSM-5 Neurodevelopmental Disorders Workgroup opposed introduction of severity scale, aware that autistic ppl were unfairly denied services: autisticadvocacy.org/policy/brief...).
Catherine Lord cited, marked that @autisticadvocacy.org policy brief as important: link.springer.com/chapter/10.1... 3/
The accompanying text to the DSM-5 states that “the descriptive severity categories should not be used to determine eligibility for and provision of services” and that “these can only be developed at an individual level and through discussion of personal priorities and targets” (p. 51). 2/
Against the "needs-led approach" of support without diagnosis for autism, ADHD, etc--"at the likely cost of... creating a generation of neurodivergent children and adults who are more distressed, more excluded, less understood, and more unequal"? www.sciencedirect.com/science/arti... commentary