Steve Silberman’s 2015 book NeuroTribes: The Legacy of Autism and the Future of Neurodiversity made a splash by popularizing the notion that autism is not a disability but part of the natural diversity of human life, and sometimes even, a super ability. Temple Grandin, the autistic animal expert, related in her memoirs how she had struggled with social skills throughout her life, but then used her disabilities to create a unique career.
In The Way I See It, Grandin speculates, “What would happen if the autism gene was eliminated from the gene pool?” There would be no science, no tools, no development, she believes. “You would have a bunch of people standing around in a cave, chatting and socializing and not getting anything done.” According to Grandin, autistic people may be bad at chit-chat, but they are very good at building things.
Read more at my newsletter, The Great Leap
Apt. 11d 
I agree that the world is simply not going to change to accommodate all differences and that we all need to learn to accommodate the world to some extent. I know someone who worked for a disability rights legal services organization and the clash of accommodations could be seen there.
Take, for example, chemical sensitivities. They could, and did, instruct other workers at the organization to respect the sensitivities and not wear perfume. But, they couldn’t make that a condition of their service to their disabled clients, and not continue to serve them. Sometimes individual accommodations will clash.
I do think, though, that it is very hard to know how essentially embedded some quirks are and what it takes to remove them. Thinking person’s guide to autism has a description of videos in which Autistic children are forced to make eye contact,. It might be possible to train some humans for which the natural inclination is to look away to inhibit the behavior to look away without significant stress. But, for some animals, including primates, the direct eye contact is a threat behavior and forcing an animal to look in the face of that threat is very hard and ultimately results in physiological stress and poor health. I don’t know where we draw those lines for others, neurotypical or not.
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bj wrote, “Thinking person’s guide to autism has a description of videos in which Autistic children are forced to make eye contact.”
There may be some cheats.
Years ago, I was talking to a Korean friend, and she was saying that in her culture, it’s polite to focus on the other person’s chin (!) as opposed to eyes.
I think that might be close enough to look appropriate, without being super uncomfortable.
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The Thinking person’s guide to autism is written by parents with very high needs autism. We see things differently. They are very “flap proudly” and neurological rights and all. They’ve given up on ABA. I do think that ABA or any behavioral training does help families quite a bit, but those individuals will never be employed or go to college. They will live at home with their parents, attend day programs, and eventually be institutionalized.
Higher functioning individuals can be employed or get further education, but ONLY if they blend in. If they can’t blend in, then they are actually in a worse position that the higher needs individuals, because there are no programs at all for them. Nothing to keep them busy all day. So, the parents either have to devote their lives to keeping their adult child moving forward, or they just give up and walk away.
Without the tools to blend in, things like this happen …. https://www.dailymail.co.uk/news/article-10779163/Parents-autistic-Louisiana-woman-insisted-decision-remain-couch.html
You know the number one cause of death for autistic people is? Suicide. Between Ian’s epilepsy and his high functioning autism, he has a life expectancy of age 35. Sitting in your house all day is extremely depressing. Autistic people need more opportunities, for sure, but schools and parents have to do everything possible to help them
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I think that there’s another group that argues for an extreme version of accommodation: those who have strong skills (often in communication, though potentially only in written form), who identify as autistic as adults and want accommodations of their quirks and may get them because they have strong skills in general (i.e. the ones who want to be able to wear cards that say whether they want people to speak to them are not). I just read a column in the Harvard Crimson by a student who has ADHD and writes about neurodiversity in which she argues that the neurodiverse are not included at Harvard though it argues that it is in an inclusive organization. She wants her needs to be met but, she can also pass the bar to get into the exclusive institution at Harvard.
Parents of those who are not going to be participants in our market economy or live independently (high support, as Sharon at Thinking People calls her son) seem to collaborate with those autistic/neurodiverse individuals because they also want extreme accommodation, but the other group gets it because they have skills that the exclusive institution wants to acquire, Ultimately, the accommodation will be mostly transactional.
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“You know the number one cause of death for autistic people is? Suicide. Between Ian’s epilepsy and his high functioning autism, he has a life expectancy of age 35”
This made my heart thump, and I am not his mother. I believe that the data is not that dire (including those with severe symptoms, ID, lack of support, in long term care, . . . . ) But, that’s why when I think that it is important for parents to listen to the perspectives of, say, Temple Grandin and other communicative autistics and take what they find useful from the conversation, it doesn’t mean that I support those others drawing lines about the appropriate interventions for other people’s children. Parents are trying to do the best by their children.
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Ugh, clicked through on your link and of course, the blanket statement about parents isn’t true in these egregious examples. But, how to prevent those outcomes while still respecting the fact that except in the worst cases, parents usually care more about their children than anyone else?
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At my academy we do have autistic staff members. And yes there have been moments where someone definitely deconstructed some mistakes or were exceptional at pointing out small slips in routine. It’s hard on the autistic staff to have to deal with the actual things; for the rest of us, merely adjusting to receiving the feedback immediately and directly is a small tweak. It would not work if those things had to be fixed immediately for the autistic instructors to be okay to keep working though, and I can see that as a real possibility.
One difference between us and most workplaces is that we have a very specific culture and etiquette and routine and we teach it to the kids, who then become instructors – so that covers the greetings/customer service some; it’s developed over years and years. Also, we do things over and over (and over and over) the same way every week. I know this probably can’t be replicated…but we have a lot of autistic students, and so having autistic staff is a logical result. The better we get at teaching and creating a good environment the better we get at potentially hiring…I hope. I mean that’s putting it out as if it’s systemic and it only kind of is accidentally – the autistic staff on my team are just M. and A., and we kind of just work it out as we go (they’ve actually been there longer than I have.)
I also am not them, so I may have a rosier picture than they experience.
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I really want Ian to go to your program!!
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If you think he would like martial arts and any of the Satori NJ schools are near you, we have a lot of common elements in our curriculum and approach, especially on the instructor training side. I only know Nancy by reputation but her reputation is stellar. If one’s near you, let me know and I can see if I can get you some more info!
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Thanks!
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“We’re hoping that Ian can do well enough in his college classes, so he can find other jobs that do not require the niceties of a burrito joint. But in the short term, he has to learn how to blend.”
So I’ve been watching your Ian stories with interest, because I have been in software for 25 years, first as an engineer and now in management. I have hired and worked with some openly neuroatypical/autistic people who were up-front about their disabilities, and many many more who were just… unusual. The running half-joke is that if you are relatively neurotypical and extroverted, you will get put into eng mangement whether you like it or not.
I don’t want to be horrible and burst your bubble, because I can sense the hope that you have for Ian’s computer abilities being his ticket to a brighter future. I think that’s great and there’s a lot of promise there. That said, people who don’t work in software often have the perception that software engineering is sitting alone in a room all day by yourself coding with your headphones on. That’s not how it works for the vast majority of us.
While we all have periods of focus time, you also have to do things like go to daily standup meetings every day where you give meaningful updates on your progress and discuss your work. You and your peers review each other’s code for potential errors and problems, and it’s expected that this be helpful and not dissolve into nit-pickery. You’ll sit in discovery meetings with the product folks, who are not engineers, and try to collaboratively figure out how a feature is supposed to work. You’ll do estimation meetings, where you and the other engineers on your team try to estimate the size of work, and brawling is frowned upon. Your manager will do what I did today and tick off your whole team that we’re not going to fix the problem the right way, because there are other business priorities that take precedence, so the best we can do is this awful hacky band-aid solution. She expects not to be shouted at or openly disobeyed when that happens.
The burrito joint turns out to be surprisingly good preparation for all of that. Some of my best employees have hefty doses of non-software employment in their backgrounds that gives them the soft skills they need for their and the team’s success.
I can deal with stimming or food aversions or noise sensitivity or needs to understand the office layout prior to the interview, but it’s harder to deal with stuff like “telling your manager that she is stupid and this is wrong and dumb” and “work on what you’re told to work on, not the problem you personally feel like is more important”. And it’s harder for many managers to see those as coming from the same place, especially when the latter is disruptive to the team.
The skills Ian’s learning now will serve him better than you know. I hope you can think of it as training for his future software job, rather than as a purgatory to be endured until he gets through the college classes the software job demands.
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Oh, yes. Totally agree. We’re working to get Ian into a intensive social skill/work program that will drill these skills into Ian in a much more thorough and scientific way. It’s a super expensive program, however, and requires financial support of a school district. Lawyers are involved.
Ian might never be able to part of a programming team. He may be in a basement of a hospital keying in medical codes into forms. As long as he is employed full time, it’s all fine with us.
Ian’s greatest skill is in pattern recognition. Top 1% of IQ for that. He could scan pages and pages of code and find the virus quickly. I’m not sure if that’s a solitary type of job or not, but that’s he’s best talent.
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I knew someone who has a HS student was checking code (for Microsoft). It was a near minimum wage job without collaborative requirements. I’m not sure exactly what it entailed, but it wasn’t coding or the kind of job that EAB describes and sounds like it might have been doable by someone with asynchronous skills.
As I’ve mentioned before, I know someone who does medical coding, and I think, actually, that medical coding involves translating doctor’s descriptions into codes.
I have always found fascinating what jobs actually entail. The example I usually give is that being a principal investigator in charge of a lab (the path to which usually includes an interest in the science that has been done by others, followed by the hands on work of doing it yourself (i.e., pipetting at the bench), and then publishing) turns into a job where you 1) write extensively, papers and grants 2) sell your work through publications 3) manage people, oh, and 4) teach. And you don’t learn those tasks along the way.
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I know some high skills people who struggle in regular employment because they can’t stop themselves from telling their bosses they are stupid (usually not quite so forthright, but the equivalent in various ways). They have found paid employment where they are giving discrete, well-defined projects they do mostly on their own and can arrange their affairs so that they control details of how, where, and when they work. It helps if the work they are doing is completely out of the expertise of the person they are doing the work for (statisticians, computer repair people, . . . ) so that the person can’t effectively critique.
They lose out on jobs and advancement and are usually working for companies where what they do isn’t the main business of the group, but they’ve found spots.
But the people I am talking about or those who have earned PhDs, without accommodations.
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bj said, “I know some high skills people who struggle in regular employment because they can’t stop themselves from telling their bosses they are stupid.”
I have an in-law who is a) EXTREMELY bright and hard-working and has had a number of fancy jobs in tech that seem to require a lot of collaboration but b) tells somebody that they’re stupid at least once an hour in his personal life whenever I’ve been around him.
I don’t know if he makes more of an effort at work, but I’ve always wondered how he manages at work. I suppose you’ve got to be smart enough and productive enough that it’s worth it for people to deal with the jerkishness.
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About that terrible Louisiana case, I would hope the police check up on the daughter’s diagnosis. I have never heard of someone developing Aspergers in middle school. Anxiety, sure. But it is worrying to me that the only source of information about her challenges are her parents, who are not an unbiased source. For example, what do her teachers remember about her?
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I wish that schools and communities would do regular in-home check ups on homeschoolers. She left school in 9th grade.
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Yes about regular checkups. But that’s not what the homeschoolers want and why some leave schools.
I know someone, two phds at Princeton, who have written about their school reported spiral into Child Protective Services that gives an understanding of why that’s a bad thing, until there’s a situation like Louisiana.
I’m feeling that there are big parts of the population that do pretty much agree that children are entirely parent’s responsibility (mostly the mother) and see continued troubled seas with children in very unequal boats.
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