A few years ago, I had a bit of a falling out with a dear friend. Both of us have kids with disabilities, though with different strengths and weaknesses. She felt that my son and I were snobby for not attending an after-school program that worked for her son. We’ve since made our peace, but now I avoid all discussions with her about my son and his education. It’s just too touchy.
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Apt. 11d 
I often get frustrated by terminology debates, beyond the general rule that I will use the words people want me to when I can.
I remember the process of incorporating the medical definition of “morbid” (contributing to disease) and “morbidity” in my vocabulary when my study of biology moved slightly clinically adjacent.
Does it make a difference if we refer to epilepsy as co-occuring with autism or co-morbid with autism? Co-morbid is calling epilepsy a condition of disease. And, epilepsy might or might not be a disease, in the sense of having a consequences for living. When epilepsy is fully controlled it can have no serious consequences on living. Co-occuring could be referring to a condition that has consequences, has no consequences, or even has positive consequences.
And I’ll listen if changing terms helps change treatments and outcomes and will experiment. More accurate terms are also good, but not at the expense of constantly changing terminology. And I’ll listen if someone wants me not to use a term with them. But, we often expect terminology to do more of the work of change than it can and then spend a lot of time arguing about it.
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I’m having problems with the terms “autism” and “disabilities” for two reasons.
1. Ian’s current autism issues — irritability, stress, higher level social skills — are very, very different from others with autism. So, it’s very had to find programs that help him with his particular needs. Rather than finding treatment on the whole autism menu, we’re going a la carte and finding medications/treatments that help his particular issues. Not the end of the world.
2. Ian is very high functioning. He is currently taking two college classes and getting 100 percent on everything. He doesn’t do the reading or what the lectures, he goes straight to the homeworks, exams, and projects. Now, it’s still early in the semester and these are entry level classes. He’s going to have work harder, I’m sure, when things get tougher. But right now, he’s flying through his coursework with no help or tutoring. We’re starting to make plans for him to finish his degree (down the line) at a technical college.
At the same time, I have friends who are shopping around for day programs for their young adults. Their kids will be plopping in front of a TV all day or walk around the mall. My friend see Ian’s problems as minor. His problems are “issues” rather than autism. I can’t talk to them about Ian’s stuff, because it’s too painful for them. Their kids are watching Finding Nemo and Ian is programming in Java.
I might stop writing my disability newsletter, because I know that it upsets people.
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“My friend see Ian’s problems as minor. His problems are “issues” rather than autism. I can’t talk to them about Ian’s stuff, because it’s too painful for them. Their kids are watching Finding Nemo and Ian is programming in Java. I might stop writing my disability newsletter, because I know that it upsets people.”
That’s awful.
Given that a lot of high-functioning autistic adults are underemployed/unemployed, isn’t there a need for what you do?
We do need to calibrate our personal interactions to the audience, of course!
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I do feel like you are exploring an area of the space of services for an adult child with autism that’s different from other versions that I see. The parents I’ve read for years have children with, as Sharon De. The children I know personally with autism diagnoses have challenges but don’t search for access to special programs or get government funding (and the ones who are really struggling won’t participate in therapy or other services as adults) so I’ve been learning about those services from your newsletters and here.
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I know that the term “Asperger’s” has fallen out of favour.
But it did help people comprehend the differing needs of people who had a combination of high-level technical skills and low-level inter-personal skills.
It was immediately clear that a program which was intended for ‘Aspie’ kids or young adults, was in no way suitable for non-verbal severely autistic kids; and vice-versa.
There seems to be this conflict between not wanting to put people into categories or boxes (and, fair enough, each person is different, and their needs and the accommodations they might need are different, too); and giving everyone else enough clues so they can usefully work with that person.
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Sadly, Dr. Asperger turned out to be a big Nazi.
Otherwise, the term is very useful.
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Aspergers in the DSM-IV, where it was identified, was difficulty in social interactions and repetitive behaviors accompanied with no language delay (normal language development by the age of 3) and no cognitive delays and normal self care (feeding, etc).
People started to use it casually for “light” autism and the distinction between Aspergers and Autism became difficult to define when the different criterion did not always co-occur (for example, no intellectual disabilities but delayed language).
True that Asperger participating in Nazi euthanasia programs: https://www.nature.com/articles/d41586-018-05112-1 makes casually referring to people as “Aspies” problematic but I think they would have renamed the diagnosis if it was thought to be helpful.
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Similar disparities happen along other “spectrum” type disabilities. Mine is hearing, which is poor but I am not deaf, and can maximize my understanding of speech and other sounds through hearing aids, lip reading, subtitles, and environmental choices (avoid big echoing rooms; choose locations with no background noise, etc). All of this is useless for people with total hearing loss. They have other needs, which I respect. They also sometimes think that my accomodation needs are trivial, when the fact is that I miss out on a lot even with those accomodations (all people with hearing loss, whether minor or major, LOVE LOVE LOVE smart phones and e-mail).
I can understand your friend whose child has more severe autism (and it is a matter of severity, although maybe also a matter of just different symptoms). Ian sounds as if he has a MUCH greater chance to spend his life doing things that are actually gratifying and mind-stretching — in what environment, you don’t yet know — than your friends’ child does. What she may not understand is how frustrating it can be, (as well as time consuming) to try to find the therapy or program that works, to see that potential and not know how to help him fulfill it.
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EB wrote, “They also sometimes think that my accomodation needs are trivial, when the fact is that I miss out on a lot even with those accomodations (all people with hearing loss, whether minor or major, LOVE LOVE LOVE smart phones and e-mail).”
I have minor hearing loss myself (never recovered 100% after an infection that burst my eardrum) and it requires a lot of training to persuade family members not to walk away from me while talking, not to talk to me from two rooms away, and not to expect me to know about a topic that was discussed nearby me but not with me.
Obviously, I’m not deaf, but there are certain limitations.
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“and it requires a lot of training to persuade family members not to walk away from me while talking,”
I don’t think I have hearing loss (yet – though I may be kidding myself).
But I was recently upbraided by my teen for rudeness to a supermarket worker.
My crime?
I asked her (politely) to please speak *to* me, rather than looking away in another direction, while answering a question.
She had a very soft voice, and we were in a loud space, and I literally *could not* hear what she was telling me.
Whereas, if you are speaking while facing someone, they have a much greater chance of both hearing you (the voice projection is in your direction), or, of being able to supplement with lip-reading.
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Ann said, “Whereas, if you are speaking while facing someone, they have a much greater chance of both hearing you (the voice projection is in your direction), or, of being able to supplement with lip-reading.”
Yep!
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True!
I find it helps a great deal in such situations to say, “I’m sorry, but I am hard of hearing.” People do understand. It minimizes the impression that I’m being snobby by ignoring something that’s been said, or that I’m daydreaming.
In any meeting, I’m sure there are many people who a glad someone else makes the request for speakers to speak more loudly.
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Masking is a reverse accomodation for people with hearing loss. The mask distorts and muffles speech sounds, and also makes lip reading impossible. On the other hand, Zoom has its advantages, mostly that you can use a headset with volume control and turn it up to maximum.
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I think it’s tough to talk across the spectrum of needs and that maybe better language can help, but I don’t think it will make the difficulties go away.
I’ve read on autism for a long time, because it is one of the adjacent clinical fields in my subfield of neuroscience, the kind where we casually converse about local microcircuits being atypically interconnected versus long range connections and that neural noise might be elevated as explanations for autism. Then, you can design a project that measures “neural noise” in typical or atypical mice lacking a particular and call it an autism study. A paragraph in the grant application and paper will then refer to autism. Now, with DSM-5, researchers will refer to ASD (“Diagnostic Criteria for 299.00 Autism Spectrum Disorder”) and researchers use those words in lectures or papers, sometimes talking about their mice. And then, some of them get yelled at, including, potentially beginning students who really only know their mice and maybe the mechanism for altering a sodium channel function. https://www.science.org/content/article/disorder-or-difference-autism-researchers-face-over-field-s-terminology
I think the debate on researchers and the language they use (which recently received press) is deeper than language, though, because knowing the researchers (Amaral, for example, editor in chief at Autism Research) I think we are also arguing about different kinds of research. There is significant funding devoted to basic research in neuroscience targeted at understanding the genetics and physiology of autism, some of it unlikely to have short term payoff for autistic people. The money & the people who do the researchers are significant figures in the neuroscience community and there are a number of funders (Simons Foundation, 5 billion, $300 million in grants in 2021, though not all to Autism) who are committed to funding basic neuroscience research, some of which will not have short term payoff for individual autistic people today.
I found someone I worked with as an undergraduate on the list of funded projects at Simons — an interesting guy who had a significant focal interest in comparative primatology (it was unusual in the department, and my project tried to correlate physiological differences in brain anatomy to different behavioral adaptation in primates — in the days before MRI) . At the time, he had pet tamarin monkeys who lived in his house. I think many of the autistic activists do not particularly have an interest in having that research funded.
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