General Autism Discussion

From a recent New York Times article (paywall):

I've heard the whole "slipping through the cracks" thing many times before. The idea that if you're able to fake being "almost normal," people don't believe you have autism, so you're left with the condition and no diagnosis, support or understanding.

It also puts into sharp relief the two articles I read several years ago - one from the New York Times, one from Spectrum - about autistic people who lose their diagnosis. Both articles show significant hints that the people still have autism and merely lost the diagnosis, not the condition. They both show examples of the "residual symptoms" the people still have, and examples of how they try to stifle their stimming (like hand flapping), and one person even says that losing autism meant losing happiness. Seriously.

There just seems to be, from what I read (both anecdotally, and with evidence behind them), that when autistic people lose the diagnosis, they still have problems... and are those problems actually undiagnosed autism or were they misdiagnosed with autism in the first place when they had something else?

I fully believe the woman in the article has autism, and that it was hard for people to recognize due to her mimicry. I mean, look at this:

Autism is typically defined by its visible behaviors. There is some talk of changing the definition to be about physical causes rather than outward displays of those symptoms. The current definition could be a big part of why people lose the autism diagnosis despite what's going on internally.

Finally, an irony:

Edited by BonsaiForest on Dec 19th 2020 at 2:47:29 PM

I was diagnosed in my early twenties and it was remarked to me during my diagnosis that on the test of how I act socially I passed for neurotypical, it was when they tested how I thought about my social interaction that I displayed clear signs of being on the spectrum.

If you’re only testing the social output then you’re going to miss people who manage to create the correct output via learned behaviour.

I'm very curious; do you have examples?

I’ve found my scoring, so it’s two sections, the scoring based on the interview with my mother about my childhood, then the interview with me in person.

For the childhood one: on Communication I scored 8, at the cut-off score of 8. On Qualitative Impairments in Reciprocal Social Interaction I scored 9, below the cut-off of 10, on Repetitive Behaviours and Stereotyped Patterns of Interest I scored 4, above the cut-off of 3. 6 items however were not scored due to difficulty recalling enough details.

Then you have the adult scoring: on a communication I scored 0, under the cut-off of 2 for Autism Spectrum/3 for Autism. On Social Interaction I scored 6, at the cut-off of 6 for Autism/over the cut-off of 4 for Autism Spectrum. For Imagination I scored 1 (no cut-off) and for Stereotyped Behaviour and Restricted Interested I scored 1 (again no cut-off).

Note that the adult scoring was done by a clinical research worker, but that was then fed into my full assessment and final interview, done by the Consultant Psychiatrist, who did pick up on a number of things for me, combine that with the obvious childhood symptoms it lead to them diagnosing me.

I suspect that that’s they key thing, once a person on the spectrum builds a lot of experience presenting their symptoms aren’t visible unless you both dig deeper and know what to look for. That means being assessed by a fully trained specialist.

It’s entirely possible that if I’d been assessed somewhere other than the largest mental health training institute in the UK I’d not have a diagnosis.

Looking back over it the key thing that shows me learning is how my scores moved over time, and how the Psychiatrist picked up behaviours that I was effectively able to hide from the research worker.

I remember that the psychiatrist and I had a lengthy meta discussion about my autism and how I manage it, that’s what lead to them commenting that I was particularly “clinically interesting” because of the depth of my meta-knowledge of my own condition and intersections.

So to answer your actual question, I slightly misspoke, they didn’t test how I thought about my interaction, they asked me and I was able to explain the autistic thought process from an insider perspective, showing that I was not only thinking that way but was able to observe and comment about my own thought process.

Edited by Silasw on Dec 19th 2020 at 9:10:25 AM

Some discoveries about "autism genes". (The article is about multiple subjects; it's a roundup of the notable research of the year.

Most of this makes sense to me and some of it isn't surprising, but why would rare, spontaneous mutations be more likely to cause a lower IQ than other types of genetic mutations?

Edited by BonsaiForest on Dec 24th 2020 at 7:37:49 AM

Rare spontaneous mutations are probably rare because they are more heavily selected against than the common ones. Which would imply that people carrying them have more than just regular ASD.

Teach social skills as values, not like computer programs

Yes, Applied Behavioral Analysis is based entirely around "do behavior at moment." "If other person does this, you do this." "First do this, then this." This is pretty much exactly how computer programs are made.

Contextless and fundamentally useless. Someone who says the right things at the right times without an understanding as to why these are the right things and times, will make more social mistakes than a person who understands context. But social skills are either taught to autistic people in terms of "you're supposed to do this when people do this", or in terms of getting in trouble for doing it wrong, assuming the mistake was something done on purpose.

But autistic people were assumed to be incapable of understanding context! That things are done for a reason!! I understand that it's not an instinct that we pick up on, but that doesn't mean we can't learn it. But the teaching method wasn't based around that at all. It was based around teaching robotic mimicry.

Books explain why characters do what they do, and describe their thought processes and emotions. It makes sense that this would teach social skills far better than robotic mimicry does.

That's why I hate the "non-optional social convention" gag in The Big Bang Theory.

... That and that my mom used that line on me afterwards, as if she thought I didn't grasp why people do things.

I would say that the best approach would be experimental: try, observe, learn. The assumption would be that autistic people should experiment with different approaches in different situations, and come to their own conclusions regarding what works and what doesn't, for them. They should expect to screw up a lot, at least at first, but to also believe that they can learn from their mistakes and eventually acquire the ability to achieve their own goals for interpersonal communication, whatever their goals may be (you may have to experiment with different goals as well—you may not be able to find your true love at work, for example). Keep your hands still sometimes, and let them move other times, observe if it makes any difference to the outcome. Above all, distinguish between your own emotional reactions and what objectively happens in a given situation: no one else may know how embarrassed you are besides yourself.

Call it the "Pirates of the Caribbean" approach to social interactions: "They're really more guidelines than actual rules."

Heh. Reminds me of a conversation I had with a fellow autistic friend of mine. He was working an internship, and he didn't understand why his supervisor was getting angry at him for being late all the time. "I work fast enough to finish my work by the time my shift is up, and if I don't a stay a bit longer. Who cares if I start thirty minutes late?"

His supervisor either wouldn't or couldn't give him a satisfactory answer, so I had to explain to him that by arriving late, he was acting disrespectful towards his boss and colleagues who do show up on time as per their agreement with the employer, and thus setting himself apart form the team.

After having "common sense social conventions" explained to him, he seemed to regret it, but unfortunately, he had finished that internship months ago, so he can't make amends. I worry that this miscommunication has seriously hurt his chances at finding employment in his field of study.

Social observation alone doesn't seem to cut it for autistic people. I've read a lot of people saying that when they were a kid or a teen, they'd study other people's behavior and mimic it closely, to try to come across as "normal."

Explaining why the social conventions exist, from the perspective of how allistics think, is what is probably ideal, I think.

Sometimes even that doesn't go very well. I kinda get the impression that a lot of allistics know their social conventions by pure intuition, and would not be able to explain them in words.

Indeed, they don't explain them in words really well, due to that instinct.

For example, have you ever heard that if you want to make friends, you should just go up to people and introduce yourself? Try literally doing that and see how well it works to walk up to people and introduce yourself at virtually any moment.

Oof, yeah, people told me that. I never took them up on that advice because I knew for a dang fact it didn't work that way.

I’d put good money on the fact that the best approach for teaching social skills and rules is going to be to treat autistics not as robots, but as foreigners.

As a society we often teach people who move to a new country what’s appropriate and what’s not, we do it knowing that they come from a context with different rules and that social expectations, with an understanding that they do care and want to get things right but that they’re operating in a context for which they have no grounding.

There’s a reason I’m as functioning as I am, and that reason is my school. It’s not only a school with a lot of kids with either special needs or difficulties, but it’s also a school with a main focus on learning to be a productive and caring member of society. Academic learning always came second, the school culture was so strange socially that everyone had to relearn the social rules to some degree, and to top it off with two thirds of the kids being from abroad almost everyone had to learn about proper social conduct anyway.

I would agree that explaining social norms and conventions in general terms is a good idea, and that expert coaches should be in charge of that, because ordinary people do not know the real reasons why they do what they do—they often don't even know they are doing it. Try asking someone how they personally interpret micro-expressions and watch them go "whaat?"

Still, there is no practical way to teach all important interpersonal norms and conventions in a systematic manner, so I suspect that it will come down to observe and learn anyway. A few general guidelines, some observational skills, and someone to ask questions of when necessary, maybe some group role play, and that's probably the best approach.

Neuroscience News reports that there's a new Theory of Everything around autism.

This all makes sense to me and is pretty much what I assumed to be the case, after having read previous articles about how, for instance, allistic parents of autistics show mild forms of the traits of autism (even things like having slightly less smoothness in how they move their body when performing tasks). I figured that people who do not have autism but have very mild forms of some of its traits would marry other people who have mild forms of some of those traits, increasing the chances of a child who has stronger forms of those traits. And if those traits are genetically connected to autism, the kid has a higher chance of actually having autism. This idea has been floated around honestly for decades, and is even mentioned in Steve Silberman's article about autistic children in Silicon Valley.

There's the idea that these traits, such as increased memory, or a preference for objects rather than the social world, can be debilitating in high doses.

There's also the idea that because autism traits are simply intensified versions of traits in the general population, there's nothing that can be done to remove them.

That's a fascinating theory. I have a few nitpicks with it. It sounds like instead of "increased memory" they really mean a less effective process of forgetting (selective forgetting is an active cognitive process and essential to learning). It sounds more like the brains of people on the spectrum may be less effective at identifying specific items of information that should be retained or ignored. This makes some sense, because long term memory is emotionally based, and autism reflects some difficulty with emotional processing.

Which is my other nitpick: where did the difficulty with processing emotional signals go? Is that not still a symptom of the overall condition?

The promise of scientific partnerships with people on the spectrum.

Few people saw value in partnering with autistic people?! Fools. It's obvious that to research a group of people, you should, ya know, have some members of that group involved in the research in some way.

Anyway, super long article, so I won't quote much. Check it out if you're interested.

One part I will quote, to give an example of why autistic people are so important to research on autism:

Yeah, allistic researchers assumed a lot of things about autistic people that weren't true. Autistic people started correcting them.

Edited by BonsaiForest on Jan 14th 2021 at 7:11:58 AM

Ugh. Just talk to autistic people, damn it.

I've recently started a Ph D myself, and I'm really wondering how to deal with this stuff. Though granted, haven't even told my supervisor yet. That's probably step one...

What's your PhD topic, if you don't mind my asking?

Short answer, manufacturing engineering. Long(er) answer, using metrology in powder bed fusion additive manufacturing. There's still a lot of specifics to work out, and some industrial connections.

I envy your seemingly well-defined area of research.

Some Autism related news out of the U.K.

Professor Sir Simon Baron-Cohen has just been knighted for his research into Autism. He specifically seem to have focused on the rule autistic people play in human innervation, how the tendency of autistic people to seek out and create patterns makes autistic brains very similar to the brains of highly accomplished inventors. Another thing he notes is that obsessive autistic behaviour can also be viewed as methodical experimentation, something that is the basis of innovation and invention.

He also talks about the more social aspect of things, how autistic people are generally much more loyal and honest employees, often ending up as whistleblowers.

The last thing I’ll touch on (though I’d recommend reading the entire article) is that he’s made proposals about reworking the traditional education system, specifically trying to ascertain how children learn and dividing them up into groups focused on learning style, specifically hands-on experimental learners and social group-work learners.

Here[1] is the full article from inews, I’d recommend giving it a full read and I’m tempted to look at getting his book.

I know he was involved in the creation of the autism spectrum quotient test, which was the one used for my adult autism assessment.