August 11, 2025

HHS autism registry | 4 autism subtypes – or hype | Minecraft makes for family fun

Blaming everything from mothers to mercury for autism is not new. But the fervor around these debunked claims has been revived under the new HHS leadership.

HHS autism registry

The specter of a US autism registry rises again

Anti-autistic language has returned to the national spotlight under the new leadership at the US Department of Health and Human Services (HHS).  

Blaming everything from mothers to mercury for autism is not new. But the fervor around these debunked claims has been revived under the new HHS leadership. CBS News covers how “parents, especially mothers, of autistic children feel blamed by the “Make America Health Again” (a.k.a., MAHA) leadership. A parent of an autistic son describes hearing that:  

… administration officials suggest that food dyes and pediatric vaccines cause autism and ADHD. That stance, she said, unfairly blames parents.

"There's no evidence to support it," [she says]. "As a parent, it's infuriating."  

CBS News reminds readers that in April, HHS Secretary Robert F Kennedy Jr said that autistic children:

‘… are kids who will never pay taxes. They'll never hold a job. They'll never play baseball. They'll never write a poem. They'll never go out on a date … Many of them will never use a toilet unassisted.’

This ableist language characterizes autistic people as needing to be prevented if they can’t, for example, pay taxes or hold a job or go on a date. As CBS News notes:

The statements are more than rhetoric. These attitudes, ranging from judgments about individual behaviors to criticism of the chronically poor, are shaping policies that affect millions of people.

One of the HHS secretary’s plans for autistic people is to create an “autism registry” based on a failed, discredited attempt at a research registry of people with Alzheimer’s. According to exclusive reporting by Josh Kovensky at the progressive outlet Talking Points Memo (TPM), one reason the Alzheimer’s project failed is that organizers did not “prepare for risks like potential cyberattacks or other privacy problems” and there was no evidence of an effort to ensure participant privacy.  

In April, HHS leaders said they planned to develop such a platform to register autistic people. Per TPM, the registry was expected to:

... amass a huge amount of data … collecting information from medical claims, wearable devices, and more to provide real-time coverage of where autism is appearing and what information correlates with it.

After pushback, the project was apparently shelved. But it seems to have been revived, according to TPM’s reporting. An internal NIH slideshow from late July indicates an agreement with Centers for Medicare and Medicaid Services, now under the direction of Mehmet Oz, to share data about autistic enrollees, TPM reports.

According to the slide show, HHS leaders expect the project to start within four months.  

TPM alerted on this registry revival thanks to a report from a US Senate committee that oversees spending. The committee noted the similarity of the plan to the previous, failed Alzheimer’s project, stating “serious reservations.”

This plan is especially of concern given Kennedy’s apparently unchanged perspective about people with disabilities over the years. From the Center for American Progress:  

• Kennedy has said that “autism destroys families.”

• He has supported putting people with mental health and substance use disabilities in labor camps called ‘wellness farms’ because he believed that there is an “over-reliance on medication and treatments.”

• He said at his confirmation hearing that “a healthy person has a thousand dreams [while] a sick person has only one.”

Researchers describe 4 autism subtypes

Real categories or contrived divisions?

A study published July 9 in Nature Genetics describes four categories or “subtypes” of autistic children. The authors say that the children could be categorized based on shared key features – some specifically autistic-related and others not so much – in each category. The researchers also report that children within a behavioral category shared more genetic variants with each other than with children in other categories.  

The study got a lot of attention, mostly for the genetics findings. One long-time autism researcher noted to Scientific American that the work had a “rediscovering the wheel” aspect to it. Another veteran researcher told the outlet that these broad categories “follow lots of findings by other researchers.”  

As with all such genetics studies, it’s unclear what the results offer for autistic people. The coverage and the published study itself refer only to how parents could use this information, and how this information could be used to tailor unspecified forms “treatment.” Given that applied behavioral analysis is usually the only form of “treatment” insurance covers in the United States, the idea of tailoring that for autistic children is not appealing.

As is common, most children whose information was included in the study were white. European ancestry is highly represented in the genetics data, which is limited for other ancestries. How these findings might bear up or apply for children of non-European ancestry is not known.

It’s also hard to say whether these categories are an improvement on the DSM’s current three “severity” levels based on support needs. The clear assumption underlying these levels is that the needs they describe are fairly consistent and static. That isn’t the experience for a lot of autistic people.  

Here are those current levels:

• Level 1: requiring support

• Level 2: requiring substantial support

• Level 3: requiring very substantial support

Support for what? Things like verbal and nonverbal communication (a.k.a., “communication”), “inflexibility” of behavior, switching between activities, coping with change, and “restricted and repetitive behaviors” that get so much focus. Autistic people can confirm that support needs in these categories change a lot, depending on what’s going on around them.

The four categories the researchers present in the new study are summarized below. Note that children in each category still had behaviors that overlapped with those in other categories. All of the children are still autistic children:

• Social and Behavioral Challenges (37% of the children), primarily distinguished from other categories by having no “significant developmental delay,” along with more anxiety, “disruptive behavior,” and difficulty with attention.

• Mixed ASD with Developmental Delay (19% of the children): an variable repertoire of social communication abilities and “restrictive and repetitive behaviors” (which are pathologized when autistic people engage in them), with some developmental delays.

• Moderate Challenges (34% of the children): overall, less obvious autistic features compared to other autistic children, and no record of developmental delays.

• Broadly Affected (10% of the children): described as having greater difficulties with social communication, “restrictive and repetitive behaviors,” and others, in a wider range, with developmental delays.

Questions for autistic readers: 

• Do you see yourself defined here in a way that would consistently reflect your experience as an autistic person?  

• What changes or supports, if any, would you find most useful for the kinds of features these authors describe here (e.g., social communication, “restrictive and repetitive behaviors,” anxiety, attention difficulty, “disruptive behavior”). 

 

Science news you can use

• Sight: A study published in the Journal of Neuroscience offers some explanation for how light sensing can be different for autistic people in ways that could explain other sensory experiences.  

• Sound: A study published in Autism Research showing how autistic people process sound in a distinctly autistic way.  

• Taste: Why do some of us find certain foods absolutely repulsive that others find irresistible? Also from Australia’s ABC, a podcast episode on that very subject, including autistic chef Matthew Broberg-Moffitt, author of Colour, Taste, Texture.

• I’ve written in defense of Minecraft as a game that promotes creativity and social interaction. Back in 2014, I wrote at Forbes: “Minecraft. Perhaps you've heard of it … I agree that many autistic folks I know love their Minecraft, but there is also a bucketload of children (and let's face it, adults) out there who love it, too.” Now, clinical psychologist Naomi Fisher is highlighted in a piece at Australia’s ABC suggesting that parents should get involved in Minecraft fun with their autistic children, who may find the screen time “regulating.”  

• The American Academy of Pediatrics has published an endorsement of augmentative and alternative communication (AAC) technology. The authors write: “Decades of research confirm that use of AAC promotes language development; therefore, primary care physicians can reassure families that AAC will likely help their child to learn to communicate more effectively.” The publication does refer readers to the American Speech-Language Hearing Association, which has a contentious position statement recommending against one form of AAC, called rapid prompting.

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People you should know

• Chloe Ayling, a model who was recently diagnosed as autistic, was kidnapped after being lured to a fake photoshoot in Milan in 2017. Some authorities and others met her story of the kidnapping with skepticism. In a new BBC documentary, described in Cosmopolitan, Ayling discusses her belief that authorities’ misreading of her autistic communication played a role in their doubts. The person who kidnapped her was convicted and sentenced to a prison term.

• Reed Richards is technically a superhero character and not a person you can know. But Comic Book Club Live has an essay arguing that Reed, played by Pedro Pascal in the new “Fantastic Four: First Steps” movie, codes as an “autistic dad.” The essay’s author Joshua Epstein writes: “Pedro Pascal’s Reed Richards … presents an uncommon character for a superhero film, in his delivery of an aspirational figure for neurodivergent fathers.”

• Amber Crabtree is an autistic researcher and doctoral student at Vanderbilt University, where she works on a device that could dampen hearing frequencies that autistic people find overwhelming. Politically motivated blocks to federal grant funds left Crabtree without the money she needed to continue her work … until a private donor stepped in. Crabtree shared with “CBS This Morning” her experiences as an autistic person dealing with painful high-pitched sounds and the devastating loss of funding, likely because her work focused on accessibility.

Got a suggestion for someone we should know? Share it with us!

Bits and bobs

• The Stanford Neurodiversity Summit is scheduled for September 13–15 this year. The theme is “Leveraging Neurodivergent Strengths to Create a Better Future Together.” Organizers “hope to weave strength-based approaches, collaboration, novelty, evidence-based, and real-world applications into each session and have more interactive conversations.” Find more information and registration details here.

• Check out the Goldbook Guide! Curated by Autastic, it’s a directory of neurodivergent-friendly shops and services around the world. If you have a listing you’d like to suggest, you can let them know here.    

• We didn’t put this under our science listings because the work wasn’t especially scientific: A study claiming that prenatal exposure to a Covid mRNA vaccine “induced autism-like behaviors in rats” has been retracted. We would like to highlight (again) that autism is very genetic and that rats are not people and can’t be autistic.

• Dating is difficult, regardless of your brain’s status. Rebecca Ellis, a researcher at Swansea Univeristy in South Wales, writes about the specific issues autistic people may encounter in this era of online dating and meetups in obnoxiously loud bars and restaurants. They also offer some useful tips for the autistic person considering a venture into these wilds. Perhaps most useful is their appeal to being authentic: “... autistic people continue to build meaningful relationships, often by challenging the rules of dating and redefining them on their own terms.”

• Speaking of a brave new digital world, the Autistic Self Advocacy Network has released a statement on generative artificial intelligence (AI): “ASAN Says No Generative AI in Plain Language.” ASAN writes: “We hope you understand why people shouldn’t use generative AI for plain language. But there are other AI tools that can be helpful for plain language. Reading level checkers like Readable or Hemingway are not generative AI. They show specific words or sentences that are a high reading level. But they don’t replace words for you, or tell you what words to use. It is up to you to make the changes you need to make your writing accessible. These tools are helpful because they give advice, but don’t change things for you. We think people should only use these kinds of AI tools for plain language.”

Thanks for reading, and keep redefining on your own terms.

Got something autism-related to share with us? Send it along to editorial@thinkingautism.com .

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About the Author

Dr. Emily Willingham is a 2022 MIT Knight Science Project Fellow, and the author of several books, including the upcoming If Your Adolescent Has Autism: An Essential Resource for Parents from Oxford University Press, and has served as a regular contributor to Scientific American and other national publications.