When I tell strangers that my daughter is autistic, their questions are often so far from my reality, it’s painful. Does she have a unique talent? Special interests? They picture a child who excels at puzzles.
But my daughter hasn’t shown an interest in toys since she was 20 months old and is unable to tell me what she wants to be for Halloween or when she grows up. I fear illnesses like strep throat because she cannot tell me she’s in pain.
It’s difficult to have a national conversation about a condition that includes Elon Musk, Greta Thunberg and also my 7-year-old nonverbal daughter, who will likely need 24/7 care for the rest of her life. That’s why families like mine want a distinct diagnostic category for our children that clarifies our challenges and what we need from the medical community.
In 2021, a Lancet commission report on the future of autism research and care introduced the term “profound autism” for individuals requiring round-the-clock care, with an I.Q. below 50 or minimal verbal ability or both. Just over a quarter of people with autism would qualify.
The commission proposed the term as an administrative label to guide service allocation and research, a recognition of the “vastly different educational and long-term care needs” of this population. Other groups, including the National Council on Severe Autism, have argued for its inclusion in the next edition of the American Psychiatric Association’s diagnostic manual.
Such a change would, in some ways, be a return to an earlier era. Today, autism is considered a unified spectrum. But before 2013, the diagnostic manual included subtypes, such as Asperger’s for people with milder symptoms. They were removed in part because they were applied inconsistently.
But this solution created new problems. We were left with the autism spectrum umbrella, the breadth of which makes coherent conversations about research, causes and policy nearly impossible. The needs of different people with autism vary so widely, we end up talking past one another. While the diagnostic guidelines include levels (my daughter is Level 3 for “high support needs”), that terminology is too euphemistic and unfamiliar to the average American to be useful.
The limitations of our autism paradigm were on display in the reactions to President Trump and Health Secretary Robert F. Kennedy Jr.’s news conference calling for an effort across health agencies to identify causes of autism. They suggested that Tylenol and vaccines might be among them.
The backlash was immediate. Experts said the Trump administration was citing shaky evidence and spreading anti-vaccine myths, which is correct. But absent from the criticism was any urgency to find the cause of a condition that is so severely limiting. Some equated Mr. Trump’s desire to do so with eugenics. Social media was flooded with jokes about taking Tylenol during pregnancy to give babies autistic savant skills.
If profound autism is increasing — of which there is some evidence, but no consensus — we need to know why. We know there are environmental contributors to autism; we should find out what they are.
Millions are poured into autism research, but only about 6 percent of research subjects have intellectual disability, a common feature of severe autism, according to one analysis. Such subjects are too often dismissed, seen as too difficult to test and more likely to have behavioral problems.
In the absence of data, we make assumptions about nonverbal people, equating a lack of speech with nonthinking and nonunderstanding. While my daughter can’t tell me her preferences, I don’t believe it’s because she has none, but because we haven’t taken the time to fully understand her condition. If children like her were in a stand-alone category, we could push for the attention and funding they deserve without being told that autism research is already happening.
To be sure, a return to autism subtypes would bring challenges and edge cases. The spectrum is vast and nonlinear. There are children who have little to no language at ages 2 or 3 but end up speaking. (This is one reason the Lancet commission reserved the profound autism label for after the age of 8, when trajectories are more stable.) Some people would not qualify for a “profound” label but would still need intensive services. I have no desire to participate in the oppression Olympics or insinuate that Level 1 autism is “not disabled enough.”
But as autism advocacy increasingly represents the perspectives of high-functioning autistic people — those who can speak at conferences and write policy papers, the needs of families like mine have been sidelined.
Some disability activists with autism and low support needs have argued against adult guardianship, the legal process that allows families to retain oversight of their adult children, claiming it violates autonomy. This stance feels out of touch to parents who spend thousands on special beds designed to keep children from wandering off in the middle of the night and who live with the grim statistics on autistic children lost to traffic accidents or drowning after straying from caregivers.
Some advocacy groups oppose programs that allow employers to pay some workers with disabilities below minimum wage, arguing that they are discriminatory and ableist. But there is a subset of the disabled population that would not be hired in a traditional employment setting; these programs, which build confidence and skills, are an important lifeline.
I know that President Trump’s comments were downright dangerous when it came to autism and vaccines. I know that Department of Education has canceled research grants focused on students with disabilities transitioning to adulthood, that the National Institutes of Health and the Centers for Disease Control and Prevention have been gutted, and Medicaid funding is being cut, all because of this administration.
But launching “an unprecedented all-agency effort to identify the causes of autism,” as Mr. Kennedy has promised, is what many parents of profoundly autistic children want to hear. Calls for “awareness and inclusion” can feel like the equivalent of “thoughts and prayers” when your child is told they are “too severe” for the third school you’ve tried to enroll them in, even though it specializes in autism, as happened to a friend of mine. It is a difficult life for both child and caregiver, and it feels invisible.
Recognizing profound autism as a distinct diagnosis is not about taking away from those who can advocate for themselves, it’s about making sure that the most stigmatized version of this diagnosis isn’t erased in favor of a more palatable version. I believe my child deserves to be accepted for who she is and seen as inherently valuable, and I also believe scientists should try to learn why she stopped talking before her second birthday, and what treatments would make her life better.
Until then, I will make my best guess for a costume, take her trick-or -treating and give her a pumpkin bucket to hold her candy, blue for autism awareness. I will explain to the neighbors that she is autistic and can’t say trick or treat, but that she loves Reese’s Cups.
Emily May is a writer and the mother of a child with autism.
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