Autism redux
The topic of autism has come back into the news lately. Or perhaps it never left. So this might be as good a time as any to call your attention to this 2008 post of mine in which I deal with the explanations for the increasing numbers of diagnoses of autism.
An excerpt:
I am not going to present all the pros and cons of the research involved; that would require a book. But I will say that, having read a good deal of it, I come down fairly strongly at this point on the side of thinking the epidemic is almost entirely an artifact of statistics and diagnostic changes.
Increasing reimbursement also fuels the increase. And the vaccine connection theory was revealed a few years later to have been a hoax.
I also want to call your attention to a Frontline documentary I saw on television way back in 1993. It’s extremely sad and very well-done. The topic is facilitated communication in cases of profound autism. Parents desperately (and understandably) wanted to believe that their previously nonverbal autistic children were thinking deep thoughts and aching to communicate, and that the technique of facilitated communication had unlocked riches that had always lurked hidden within them. But it was actually – if not exactly a hoax, then a case of yearning and wishful thinking on the part of both health professionals and the relatives of the autistic children.
Here’s the link to the documentary:
True Autism is a tragedy and should not be trivialized by the hoaksters.
We have a connection to the family of an Autistic man. We cannot know what goes on in his mind, but he seems content for the most part; although prone to outbursts if frustrated.
While his is the tragedy of a life profoundly restricted, another aspect is his Mother, who is failing badly herself. She has grieved, and has worried for most of his life about what will happen when she is gone. Fortunately, he has a sister who is prepared to take on the responsibility for his care, so it will hopefully be a relatively smooth transition. Emphasis on relatively.
The scourge of Autism can cast a wide net of worry, grief and debilitating burdens over loved ones.
The people who are “profound autistics” are actually a small portion of what is now called Autism. A lot of us used to be labeled as “Asperger Syndrome” until the expansion of the autism definitions in 2015, in the DSM-5, published by the American Psychiatric Association. And yes, I used the term “us”–I am on what some call the “high-functioning” end of the autism spectrum. Some are using the terms Level 1, 2, and 3, with 1 being those who used to be labeled as Aspergers, and 3 being the profound and often non-verbal.
I still think a major part of the “epidemic” of autism is that they are finally looking for us. I’m 76 years old; when I was a kid, nobody was looking for us at all. A few parents were concerned about their kids and consulted a doctor (Professor Temple Grandin’s mother was one of them–she’s now well-known as an advocate for autism.) Personally, I never even heard of Aspergers until I was 55 years old, and it was like the lights coming on for a lot of things, both in my childhood and as an adult. In the years after, my grandchildren started being diagnosed–all ten of them. several also with ADHD. Why do we have so many? Because it’s primarily genetic–you get it from your parents. The CDC’s website page on autism labeled it as 70-80% genetic–years before RFK Jr. got into the government. But in our family, what we have figured out is that in our families–both my own and my wife’s–we have been marrying others on the spectrum for at least 3 generations. It may go back farther, but we don’t know enough about people’s behavior to be sure.
It’s the old ” if you look for it you will find it”.
Phil
It’s a loaded subject. Say something about causes and you might end up allied with RFK, jr, and be cast out of polite society, whether or not it’s anything like he’s speculated.
AI, checking around, says the most common scientific guess is a “spontaneous genetic glitch at conception”. Which, if it were as rare as we think it is, wouldn’t account for concentration in families. But there is no genetic marker in parents (as with the sicklint cell trait, a recessive) which can be determined from a live person with the warning not to marry another such person. If it’s spontaneous, how are there families with two of two kids, or, in one case I know of, three of three? And there’s nothing discernible in the parents? Leaves something in the environment, even if the issue happens while the kid is in utero. Which leaves you with RFK,jr.
Fascinating documentary, and thank you for posting it !
The only worry I have about AI is if.it becomes self- replicating.
Phil — nice summary. Very nice.
“Asperger’s” syndrome was named after a Viennese paediatrician who identified it during WWII. Unfortunately, he was also a loyal and enthusiastic Nazi Party member, so our defenders of moral rectitude had to change it. Nonetheless, nothing other than the term “Aspie” for high functioning blokes on the autistic spectrum, have caught on with normal folks.
The 2016(?) action film has Ben Affleck playing an Aspie using great mathematician’s names for himself, as a cover for being a genius-level forensic accountant in “The Accountant.” The marginalized talent finds his unique niche in life. See it!
Like Christopher Nolan’s signature plot structure, it teasingly unfolds at least 4 or even 5 character timelines, clashing together by the end. “The Accountant” therefore makes my top 10 list for the best film of previous decade.
This neo-noir film perfectly fits into the genre, because he endured a uniquely distressing youth — but learned new skills and adapted. By the end of this Cable TV movie staple, we see that, like the classic film noir hero, he also lives out strong moral code of conduct. Like the Knights Errant of old. The Aspie as hidden hero.
My old university roommate Mike is an Aspie. He earned his PhD in statistics, and spent 5 years teaching at MIT, the number one ranked applied math department in the world.
Unknowingly, however, he retreated from the tough task of successfully interacting with the non-Aspie neurotypical social environment. The non-Aspie’s world is ruled by common cue-based or implicit emotional signalling. Therefore, his career stalled when his Italian MIT mentor named Rota died and he became professionally too isolated to keep moving up.
That, plus that his retreat included marrying another Aspie who actively “protects” him from dealing with the socio-emotional challenges of navigating the non-Aspies world. In other words, he accepted a love story that exchanged stark challenge for comfort and belonging.
But I hope to have a reunion soon with our other genius roommate (a PhD, MD, degreed neuroscientist), where we open up with him to share our perceptions on his life, and our understandings of his career under achievement.
We could update Tolstoy on family drama. “All genius failures fail in their own unique way — unlike the ungifted who all fail the same way.” (Well. I will work on this parallelism.)
Pretentious much, TJ?
TJ, your old roommate completed a STEM degree, got a job in his field, and married a comparable woman. That sounds pretty darn good to me.
Richard Aubrey–the latest reports I have seen on the genetics of autism is that it isn’t one or two genes; there may be as many as 800 involved. That’s the likely reason they cannot diagnose autism in embryos. And as I mentioned, even the CDC has said it’s 70-80% genetic–that leaves room for other factors that can make it better, or worse. And that many genes involved is likely why there is so much variation among autistic people; one reason the term “neurodiverse” has caught on with autistics is that we are diverse from each other as well as from the “neurotypicals.” Tony Attwood, a British psychologist who is one of the modern experts on autism, has his own take on this: instead of “If you’ve seen one, you’ve seen them all,” Attwood says, “If you’ve met one person with autism, you’ve met one person with autism.” Meaning, the next one you meet could be very different. In my own family, we have a computer programmer, artists, musicians, and more.
Phil. if it can’t be diagnosed in the embryo, it likely can’t be diagnosed in the parent. The latter would be preferable.
Hypo: Presume a parent is on the mild end of the spectrum. A kid is not at all affected. But is raised in an environment where conversations are frequently like. ‘this:
Party A–not affacted. Says, “We’re going to see Cherokee Park in Louisville. Fabulous homes. ” Party B, the affected one, says in alarm, “But we were going to visit the Seminary.” As if the preplanned visit to the Seminary is suddenly off the plan. But the Seminary is just across the street and you can hardly get there without going through Cherokee Park. This could be a part of being somewhere on the spectrum. If a kid is raised in an atmosphere where this sort of conversational misunderstanding is frequent, will he be inclined toward it himself, or away from it?
Re om. Not at all. I know I’m outclassed by old roomies (higher IQs). Plus, they’ve got the resumes that I don’t. But I’m working on catching up a bit! That’s the best I can do in later life.
AppleBetty. True. His wife was forced to leave nursing (alleged medical misdeeds). So she got her MS in Stat’s too. They both taught at Iowa State and NC State.
But Mike came from a large Catholic family. He was well socialized. Just need to go further that way to go further professionally
Phil — Interesting. Except that Aspie females are much less common than rare high functioning autistic men. Ye5, somehow, I’ve managed to find and befriend or even date some 6 like that! Go figure.
Aspies are very literal minded. But because of my parents, I’m highly intuitive.
This makes for eventual mutual disappointment with intimacy with them. Only in late middle age did I learn to deny myself.
One old saw about them is the lack of “a theory of mind”. Or the lack an internalized model of other’s minds, allowing one to projectively identify with an individual’s needs. Which makes mutual closeness with Aspies…tricky as the Devil! Intuitions mess it up.
.
TJ:
Not pretentious:
That ought to be a fun last get together.(sarc)
I have taught kids Sunday school for years. A few years ago, a friend asked me if I could take her autistic granddaughter, and of course I agreed. But I didn’t know anything about autism, so I thought I ought to learn a little bit. In the course of reading, I picked up Temple Grandin’s autobiography. As I read through the book, I kept thinking: “Hmmm. That kinda sounds like me.”
The more I learn about autism, the more I think I might be somewhere on the spectrum. Well, I’m a socially inept engineer, so I fit the common stereotype. Dunno what anyone could have done if it was identified early on, but if someone had taught me how to talk to girls, I would have had much more pleasant teen and early adult years.
I definitely believe that autism is syndrome where both nature and nurture contribute.
AesopSpouse was actually diagnosed at about age 7 as a “typical absent-minded professor” as the symptoms for Asperger’s were not yet commonly known even among doctors, but we all knew the stereotypical example. He has 3 college degrees and ended up as director of his division in the company, so not too limited, but his social skills are not going to rival P.T. Barnum’s.
Our oldest grandson, now 22, is a high-functioning autist, completed high school (not with a sham degree), and works as a helper in the high school cafeteria, which allows him to buy the video games and movies that he enjoys. He can carry on a conversation, although in a rather robotic monotone, takes care of the cats and dog, and has earned his Eagle Scout award.
He did attend a special needs program, and his parents found Temple Grandin’s work very helpful in guiding his development.
His dad and mom are almost certainly on the spectrum somewhere on the higher functioning end, but in different ways, as are his brothers.
Except for the youngest, who admitted a few years ago that it had taken him a long time to accept that he was the only neurotypical member of a very neurodivergent family.
I just told people “he’s the normal one.”
Richard Aubrey–Throughout its history, since it was first labeled in the 1940s, autism was never diagnosed by genetics–it was diagnosed by behavior. I have read that Hans Asperger suspected it was genetic, because he recognized some of the same traits in the parents of the children he was working with.