Do some tall people have "profound tallness?" (This is an autism labels side-eye)
You can’t take the tallness out of someone, not in any ethical way. “Tall” is just what they are.
We are all human and we all have height, but some of us have higher cruising altitudes than others (I am not among those people). The physical contributors to that higher altitude vary among those with that trait. Some have relatively long legs. Others have relatively long waists. Others have waists and legs that are proportional but both with a length to contribute to greater-than-average height. Nevertheless, tall people are all readily recognizable as having higher than average cruising altitudes.
The genetic contribution to height is about 80 percent, similar to what a lot of experts ballpark for being autistic. About 12,000 gene variants have been identified as potential contributors to human height (there are probably more). Only a handful of genetic variants are linked to “big-hit” effects on height. Beyond genetics, the rest of height is attributable to environmental factors, from protein and other nutrient intake to various conditions to actual altitude where a person grows up.
All people who are taller than average must deal with a similar set of incommoding issues in daily life, including airplane seats, doorways, dangling light fixtures, tiny cars, weirdly small toilets, clothing at regular clothing stores, and not-tall people asking constantly “How’s the weather up there?” as though they were the first to ever, ever make that “joke.” Anyone who is tall would benefit from accommodations for tall people, no matter how over-average in height they are. There’s not a category of ceiling height that would be great only for some tall people and not others – they all would have to duck a little less and sustain fewer banged heads. There’s not an embiggening of an airplane seat that wouldn’t help tall people be at least a little less painfully uncomfortable – they’d all have a little more room for their femurs. Accommodations for tallness are useful for all tall people. And being tall carries risks, including for specific kinds of heart disease, skin and bone diseases, and nerve problems.
There are many roads to what we humans view as “being tall,” but in the end, the outcome is, well, being tall. We don’t spend a lot of time discussing tall people as being “profoundly tall” or subdividing them in some way based on their tallness. We don’t have pages of handwringing in the news media and scientific literature about how to prevent tall people from existing or indirectly implying that aim by going on and on about causes. We don’t perseverate in op-eds and 24-hour news channel commentary on how tall people discompose us at movies and public events because we can’t see over them. We don’t talk about how distracting tall people are, how much space they require just to exist, or what a burden their clinical needs are on society, and we don’t ask why we have to have tall people around at all when they are just so much trouble for not-tall people (to be clear, I live with and love several tall people). And one other thing: You can’t take the tallness out of someone, not in any ethical way. “Tall” is just what they are.
You can probably see where this is going. For most autistic people, their autism also arises from the combinations of a huge number of gene variants. Just like being tall, a subset of autistic people arise from “big-hit” variants that also carry other conditions with them. Just like being tall, autism entails the more frequent presence of some co-occurring conditions. Just like being tall, all autistic people, regardless of how their status arises, could benefit from the same kinds of considerations and accommodations for shared autism-associated traits, including sensory sensitivity, communication difficulties, and enduring oblivious, cliched assumptions and commentary from people who aren’t autistic.
Any single accommodation for one autistic person would almost invariably serve as a useful accommodation model for another autistic person. Assisted communication devices? Even the most chatty autistic person could find benefit in that on some days – maybe many days. A calm, cool, dimmed place to go when the overwhelm crosses a threshold? Find me an autistic person who wouldn’t benefit from that. A society that doesn’t assume a total lack of empathy in someone who’s autistic? Inject that into my veins.
The traits that define autism define all autistic people. The concept of “profound autism” is dehumanizing and separatist. It’s probably not exactly shocking that it was recently centered yet again in the national media, this time on the pages of the New York Times (not linking to that). Even less shocking is that the NYT reporter pushing the idea has already gained, let’s say, a certain reputation in the trans community (and those who love them) for performing “intrepidly objective reporter just asking questions” (and betraying the trust of trans people, which I am linking). People do show you exactly who they are when they join in the attack on the most vulnerable in our society, do they not?
Just to be clear: A lack of recognition, supports, and accommodations and the presence of co-occurring conditions does not mean that some people have “profound autism” any more than a tall person indoors at Bag End would be viewed as having “profound tallness.” Autistic people are all autistic. Period.
I’ve said it here before, and I’ll say it here again: 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.” Hope this helps.
News you can use
- This coverage at The 19th News of the recent dog-and-pony-pooping-a-nothingburger from the current administration regarding Tylenol gives the much-needed history of how the birthing parent has long been “blamed” for having an autistic child. In this case, it comes with a twist unique to this administration: Tiffany Hammond, an autistic mother of autistic sons, “sees the focus on Tylenol and vaccines not only as a way to blame moms, but as a way to distract from Trump’s cuts to the services and supports families like hers need.” She “expressed frustration that federal officials are pointing to acetaminophen instead of finding more ways to support autistic people here and now. Hammond’s older son, in particular, is non-speaking and requires significant support.”
- Relatedly, a low fraction of Americans bought the bullshit. A Yahoo/YouGov survey shows that only 15% of respondents believed the nonsense claim of a link between acetaminophen and autism. Way to go, Americans.
- The Arc has published a summary of how the ongoing federal government shutdown could affect people with disabilities. Most immediately crucial: “Social Security and Supplemental Security Income (SSI) payments will continue during a shutdown.” However: “While these critical needs will continue to be met, a prolonged shutdown could exacerbate ongoing customer service issues created by the underfunding of the Social Security Administration (SSA).”
- FDA Commissioner Marty Makary apparently thinks autism isn’t genetic. I love it when the person heading up one of our key scientific agencies shoves decades of scientific evidence aside and goes with the vibes in his head, instead. Reader, I do not actually love this and wish we could get off of this particular ride.
People you should know
- Aimee Grant is an associate professor in public health at Swansea University who is autistic and a wheelchair user. She has also participated in the “Science Finds a Way” podcast to talk about autism from menstruation to menopause, which is something a whole lot of us could stand to understand better.
- Marcy Hannah Waring, an autistic self-advocate of color, has written a piece for the American Association of People with Disability detailing why she’s not interested in a cure. She writes: “You cannot honestly claim to love an autistic person while simultaneously wishing they weren’t born the way they were. You cannot claim that changing someone’s identity is in their best interest unless you are a proponent of conversion therapy. I ask you to consider that autism itself has the power to bring people joy. I experience happiness to the extreme. My partner loves my vocal stims. I can be entertained by the simplest things. I show people love in the most unique ways.”
- Molly Siobhan Parker is an autistic actor and writer who talked with the BBC about her diagnosis. She says about her experience: "From my research around autistic women, it happens a lot with women being late diagnosed … We mask all our lives through high school, through education, through university, and then boom, it kind of blows up, we can't mask anymore, we're in severe burnout and we struggle mentally."
Bits and bobs
- Check out this video from Irene at The Thought Spot, where she talks about nonverbal ways to connect with your person.
Thanks for reading, and may we all continue to show people love in the most unique ways.
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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.