Positives of parenting autistic children | Fixated HHS leaders | Later-life diagnosis
“There is nowhere else that I’d rather be than with them.” Those are the words one autistic parent used to describe their feelings about their autistic child in a new study from autistic researcher Melanie Heyworth and colleagues.
Positives of parenting autistic children
“There is nowhere else that I’d rather be than with them.”
Those are the words one autistic parent used to describe their feelings about their autistic child in a new study from autistic researcher Melanie Heyworth and colleagues.
For the study, published July 6 in Autism & Developmental Language Impairments, the researchers conducted interviews with 80 parents, half of whom are autistic. From the interview material, Heyworth and co-authors sorted out five main themes that are likely relatable for most parents:
- Parenting is challenging and enjoyable, with “the highs and the lows.”
One non-autistic parent described their relationship with their child as “fragile, but it's solid as well.” Parents commented on feeling challenges, describing parenting as “fraught” and saying that “It’s really hard to enjoy any part.” Other parents said things like:
“It’s impossible to not find joy in his smile.”
And one parent asked, “Is parenting supposed to be joyful? I mean it can be pleasant but it's not like I’m expecting some joy… it's not about me anymore, it's just about the kids.”
- Parents value time with their children, shared activities that are “moments of joy.”
One parent said that “one of my favorite things is when she gets excited, she’ll jump, the Autistic excited jump thing, and I love that.” Another said:
“She makes me laugh so much.”
- Parents value their child’s personality and empathy, saying that even if their child “shows it in a different way than a lot of kids … it's, it's very clear, very clear.”
Caring, empathy, and physical affection were all highlighted, with one parent saying, “She just knows when I’ve having a hard time.” Parents appreciated their children’s authenticity, noting, “He’s weird and just embraces being weird.” One described their child as “the most interesting person I know,” and another said:
“He knows how to embrace his Autistic truth.”
- Parenting is fulfilling, including being the “safe person” when their child is “trusting me with something so important” and sharing that trust. Parents said that they knew they “must be doing something right” and “when he’s happy, it’s an infectious type of thing.”
One parent said:
“He gives the best cuddles. So that's where I find the joy.”
For many parents, being the safe person for their autistic child was immensely satisfying. One parent described it as mutual: “the ability that we can show each other our feelings, that we’re safe in that sense, that we trust and believe in each other strongly.”
- Collaboration, learning, and acceptance are all crucial to that fulfillment.
They said that acceptance “helps with that connection” to their child and that reframing expectations promotes acceptance:
“You’re having to really reframe everything.”
One autistic parent said that the experience of parenting was “uncomfortable and it's required huge amounts of energy and focus and commitment to unlearning and relearning, but:
“… we are all so much better off for it.”
***
HHS leaders fixated on out-of-date autism beliefs
As we noted in “Bits and bobs” in our August 4 newsletter, a recent large study from Denmark put to rest yet another claim that a vaccine ingredient could be linked to autism. The huge study included data for 1.2 million people and was published in the highly respected Annals of Internal Medicine. It showed no links between aluminum in vaccines and a suite of outcomes, including autism.
That wasn’t enough for Health Secretary Robert F Kennedy Jr, who is fixated on pseudoscientific beliefs about autism that emerged at the turn of the 21st century, almost entirely based on a retracted study widely characterized as a fraud. Among these beliefs is the repeatedly researched and debunked notion that vaccine components cause autism.
After the July publication of the new Danish study, Kennedy wrote an essay claiming that the work was "a deceitful propaganda stunt by the pharmaceutical industry” (it was funded by the Danish government) and implying that the results were manipulated. In that piece, he also called on the Annals to retract the study.
Reuters reported on August 11 that the journal’s editor in chief, Christine Laine, who also is professor of medicine at Thomas Jefferson University, says that she “sees no reason for retraction.”
The journal plans to respond more formally to Kennedy’s claims. But in the meantime, the Danish researchers expressed understandable bafflement at this response from the head of a national health agency. The lead author, Anders Peter Hviid, head of the epidemiology research department at the Statens Serum Institut in Denmark, told Reuters:
"I am used to controversy around vaccine safety studies - especially those that relate to autism, but I have not been targeted by a political figurehead in this way before.”
He added, “I have confidence in our work and in our ability to reply to the critiques of our study."
Hviid has already replied to claims in Kennedy’s essay on the site where it was published. Obviously, for the near future, we can anticipate much more wasted time and resources on this and other, related, already thoroughly addressed questions.
Meanwhile, the NHS’s NIH director Jay Bhattacharya doesn’t seem to understand autism very well. He spoke with the libertarian outlet “Reason” in defense of the “Autism Data Science Initiative” we wrote about in the August 11 TPGA newsletter. Advocates are concerned that this “initiative” will translate into a privacy-invading, exploitative autism registry. Here’s some of what Bhattacharya had to say about autism:
“I personally have a cousin who has a severely disabled autistic child who is now a young adult. It's a very, very different thing, it seems to me, biologically, than someone who's just simply neurodiverse.”
In addition to suggesting that there’s a category of person called “simply neurodiverse,” Bhattacharya also wants to waste more money on artificial divisions of autistic people:
“I think folks that are high-functioning autistic, the kind of help they need would be very, very different than the kind of help that someone on the more severely disabled part of the spectrum might need. There's also, on some parts of the spectrum, co-occurring conditions that are more biologically derived in origin.”
All autistic people are “biologically derived,” and how that would be distinguished for co-occurring conditions is unclear. Readers can probably come up with some ideas about his meaning. But Bhattacharya appears to think that autistic people exist in fixed regions of a “spectrum” with no overlap among other parts of this imaginary “spectrum."
Bhattacharya seems stuck right around the same historic time point as Kennedy. The concept of a “spectrum” made its way into public consciousness and clinic-speak with the 1994 edition of the DSM. It took hold and led to many efforts focused on a favorite pastime of humans: dividing other humans into discrete categories.
Pushback against the metaphor of the spectrum began to build by the end of the aughties, at least, and has continued ever since. This pushback is especially important given efforts to bury some autistic people under the dehumanizing label of “profound autism,” which separates them from other autistic people.
As autistic people have repeatedly sought to communicate, the experiences of any one autistic individual can vary in intensity from day to day and lead to fluctuations in their function. But autistic people do not form a fixed spectrum with clear segments of “high functioning” and “low functioning” and “profound.”
Science is, at its heart, the intellectually honest practice of updating conclusions as new information warrants. It is the opposite of adhering at all costs to old ideas.
News you can use
- The Autistic Self Advocacy Network is hosting a series of back-to-school learning sessions from now until the end of August. Sessions include expert guests talking about racialized ableism in education, anti-fatness and ableism, and understanding fascist disability policy.
- The Wall Street Journal ran a (paywalled) piece on addressing the dangers of genAI chatbots for some autistic people. FYI: It refers to Autism Speaks as a “leading autism advocacy organization” and quotes Simon Baron-Cohen. It also leads with, “The very qualities that make chatbots appealing — they always listen, never judge, and tell you what you want to hear — can also make them dangerous. Especially for autistic people,” which doesn’t sound at all like something a lot of autistic people we know would find appealing. Anyway, broken clocks can still be right twice a day (once if they’re a 24-hour clock), and this essay is about calls to develop guardrails on genAI chatbots.
- A non-peer-reviewed study published by a company that develops commonly used medical software is getting some media attention for its conclusions that autistic boys are still being diagnosed at an earlier age than autistic girls. At the same time, diagnoses among women are on the rise, potentially one outcome of these delays.
- Reform applied behavioral analysis (ABA)? That’s the question posed in a study published in the Journal of Autism and Developmental Disorders. Based on responses in the study, some goals such as improving quality of life might be OK to keep, but reducing stimming or focusing communication interventions only on speech are not. The authors highlight the pushback on ABA practices from autistic adults. Read and participate in the lively, thoughtful discussion on this question and these findings over at the TPGA Facebook page.
New post at TPGA
https://thinkingautismguide.com/2025/08/diane-j-wright.html
People you should know
- Read at the 19th News about the passing of Patty Berne, a leading light in the disability justice movement. Journalist Sara Luterman writes, “Disability justice was first developed in the early 2000s by Berne and other activists, including Mia Mingus and the late Stacey Park Milbern, who felt excluded by the mainstream disability rights movement as queer people and women of color. They felt frustrated by single-issue advocacy and decided to create something different.”
- Speaking of women being diagnosed later in life, Sue Nelson, BBC’s former science correspondent, talked with The Telegraph about being diagnosed as autistic at age 60.
- Rethabile Moshoeshoe-Molapisane, a pharmaceutical scientist and PhD candidate at the Tshwane University of Technology in South Africa, is working locally, nationally, and internationally to promote “inclusion and neurodiversity through accessible science communication.”
- In another story about diagnosis in adulthood, PhD candidate Matteo de Vuyst writes in Science about his experiences continuing with his studies after being diagnosed as autistic in his first year of graduate school. He found that insights from other neurodivergent researchers was one of many resources that helped him succeed. He also learned to become more comfortable with himself, writing that “instead of trying to squeeze myself into a space, I’m gently reshaping it to fit me.”
- And this anonymous author, a woman, writes in the BMJ about being diagnosed as autistic at age 46. For them, it was also a matter of an undiagnosis because they’d carried the label of “emotionally unstable personality disorder” for 23 years, which led them to lose trust in doctors. Even as some researchers still focus on trying to categorize instead of more readily recognize and support autistic people, this autistic woman feels that the missed years left her with “grief about how my life could have been if I had known I was autistic as a young woman.” Yet, she writes, “I forgive myself for past mistakes using my newly developed self-compassion.”
Got a suggestion for someone we should know? Share it with us!
Bits and bobs
- Speaking of spending time and money on research that gets autistic people nowhere, here’s another study of “environmental factors.” It relies on tiny differences and very small numbers of people to make claims from a confusing set of findings. The ableist language does not elevate the material.
- Results published in Infant and Child Development suggest that leveraging the communication strengths of autistic people would serve them better than trying to force communication techniques or “fix” spoken language.
- Autistic students heading for college experience anxiety and depression at higher rates than non-autistic peers, according to findings published in the Journal of Autism and Developmental Disorders.
- “Hidden Barriers: Autism and Airports” is a UK documentary made by the North-East Autism Society. It examines airport navigation for autistic people from start to finish and includes autistic people as interviewees, offering insights from them about what would make the experience easier.
Thanks for reading, and here’s to finding joy in a smile.
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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.