Comments
1080

Thank you for an honest and raw piece on autism. As the mother of a 32 year old on the spectrum who can’t keep a job and stopped trying before the pandemic, I appreciate it. I am so tired of the autism is cute crowd and specials like Love on the Spectrum who make it appear as though this is a lovable and easily manageable problem for most people. My heart goes out to you and your family.

Expand full comment

for all those wanting to dig further into the issue the midwestern Dr just brought out this piece explaining some possible causality for autism https://www.midwesterndoctor.com/p/how-do-vaccines-cause-autism?

Expand full comment

My autistic son, another Jonathan, is 28, and I agree completely about the autism is cute image. 10 years ago, the DSM eliminated Aspergers Syndrome as a diagnosis and folded it into Autism Spectrum Disorder. This gave the public a distorted image of what autism actually looks like for the overwhelming majority of families. And it created the identity politics neurodiversity movement. Because people with Aspergers can speak for themselves and people with more profound autism cannot, this spread the idea that autism looks like Extraordinary Attorney Woo.

Thank you, Jill, for your article, and Bari, for publishing it. It is true that public services are not prepared to handle the tsunami of autistic adults who are in desperate need of services. In the short term, it is up to those parents who can to help fill in the gap. In our community, we started a nonprofit that provides job training and employment for autistic adults (we serve about 100 young people a year), and we are in the process of starting a group home. Yes, government needs to do more, but parents can do a lot. And the more parents start programs, the more models are out there to show what works and what doesn't.

Expand full comment

agreed. i keep having people ask me if my 8 year old son is a genius, whether i've seen any extraordinary tendencies emerge. Is he the next Elon......I'm honestly just excited that he used a fork correctly today. Little things really

Expand full comment

That was a test

Expand full comment

Hello, and welcome!

Expand full comment

I have a 22 yo who still struggles with utensils, he has poor fine

motor skills. But boy oh boy, can he ever hit a golf ball.

Expand full comment

I have a 32 year-old son living with me. When he was tiny, I called him, "Sunny Jim." Absolutely no fear of anyone, no night terrors, always so very happy and well-behaved, loved by everybody instantly. He seemed quite precocious and dearly loved any machinery; I still have a video of him digging a giant hole with my backhoe on my farm, three years old and alone on the machine - so small that he had to stand behind the levers to operate them, rather than sitting on the seat.

Once he reached school age, it was a very different thing. He was very disruptive in school, with almost zero impulse control; a classroom observer's report related that the most amazing thing was that the other children could get anything done at all. He was eventually diagnosed with ADHD, and after more than a year of resisting, we put him on medication. As is the usual case, his behavior improved, but his grades did not.

He tested IQ 118 all across the board - basically high normal. His "splinter skills," we called them - such as self-taught computer programming - were nothing less than spectacular, but if he had no interest in a subject, he could not pass.

Fast forward. He is now 32, has never been able to hold a job, and lives with me. I'm working to get him out in the workforce, but secondarily planning long-term support for when I'm gone. (I just turned seventy.)

There IS an answer for this. What is it?

Expand full comment

I can see a use for AI here. Let's say the autistic person has a job like flipping burgers. The AI is hooked up to the incoming orders list, and can prompt the autist what to make. For a normal person this would mean displaying the orders list as is, but depending on the various ways the autistic person can become distracted or lose focus, they may need steering along various paths to get back on track. Steering inputs might include a generated voice talking continuously in their ear, visual cues (possibly delivered via augmented reality glasses), and bracelets or gloves that vibrate in a variety of ways. In short, turn the autist into an industrial robot with an AI control system. A single feedback system that also prompts for narratives like "go shopping", "do laundry" and "clean my room" would spread any available development funding over as much of patients' lives as possible, while allowing the control system to match the autist's mood over a whole day, not just a single activity.

Expand full comment

Really good thought.

Expand full comment

Could it be that these people like your son are simply not designed for a post modern society? Hunters, gatherers, high intuitive ones, broken things fixers, bakers, community mood creators / maintainers..?

I can’t help thinking about all these important human roles that got abandoned in a post industrial society.

Could this be an answer..?

Expand full comment

For some. If I'd been caught a lot earlier.... Not a lot of help though if you are Classical/Kanners. For every idiot-savant who gets to be a media darling or whose particular whizz can be monetised, there will be 99 who never get out of the Terrible Twos and worse. I'd pretty much alienated my Mum and all my siblings long before I found out what was actually going on. I think we'll have to catch the train pretty much as, if not before, it derails. Once those neural pathways are set it is going to be very uphill even if it becomes possible.

Expand full comment

I see why some disagree with you but I agree to the extent that getting jobs in the corporate world in large businesses is a lot harder for some than if they just grew up and did whatever dad did, as kids may have done pre 19th century. I work as a programmer and remember when my old (smaller) company hired this autistic guy who was very quirky and people had this attitude of "we took a chance on him" and I always wondered if it was hard for him to get a job elsewhere because he'd probably bomb the interviews. But he was very verbal, unlike the focus of the kids and young adults of this article.

Expand full comment

No offense meant, but no.

Expand full comment

Sorry, Jim. My boy dropped out of college one semester shy of a biochem degree. He was diagnosed with ADHD as a sophomore and put on Adderall which was a wonder drug according to him. I'm not happy he's on it, his sleep schedule is so messed up. He also has OCD, co-morbidities are very common with Aspies. He can't hold a traditional job. All he's doing now is Door Dash. He does live independently but only because we pay his rent. He struggles so much with everyday life. We are fortunate that we can financially support him, unlike so many others. He has sisters and they know someday he will be their responsibility.

Expand full comment

I had a psychiatry professor who told me that he was preordained for psychiatry. His mother was bipolar - then called manic-depressive psychosis, and he told me that as a high school chemistry lab assistant, he could still see in his mind's eye the lithium carbonate sitting on the shelf, and that he always thought how slipping a teaspoon of it into his mother's coffee would have let the family live a normal life. I have this horrible recurring thought that the answer to autism is somewhere right in front of our face, too, and we just cannot see it.

Expand full comment
Comment deleted
Jul 22, 2023
Comment deleted
Expand full comment

Agree. I am thankful that the Asperger's term is being used again. It might be on the same spectrum, but the symptoms display very differently

Expand full comment

Exactly. I'm actually not certain my boys would qualify (doesn't language delay exclude Aspergers's) but they are closer to that than to Jill's kids described in this piece and I feel weirdly guilty about even using the same words to describe such different levels of impairment and need.

Expand full comment

I think this is a problem across the board in mental health. The dumbing down of mental illnesses into quirkiness, as well as the celebration of 'mental diversity' both do nothing for patients who are smack in the middle of a psychic hurricane and suffering.

Expand full comment

I agree, Pippi and Charlie G. My sons has an ASD diagnosis but he is more "Good Doctor" version but without the savant situation. And even so, it isn't cute or any sort of identity to celebrate.

Expand full comment

To me, I believe the intention is to bring awareness rather than to "cutify." I have an Aspie son and I welcome educating people on how to identify the characteristics so people can think "he's on the spectrum" rather than "he's a weirdo."

Expand full comment

I’m all for efforts that increase opportunities and acceptance for those disabled by autism — I put my heart into many such efforts, at all ends of the spectrum. My primary concern however is with the research and policy spheres increasingly sugar coating autism.

Expand full comment
Comment deleted
Jul 22, 2023
Comment deleted
Expand full comment

Why are Xtianity, Judaism, and Islam all called "Abrahamic religions"?

Expand full comment

This article needs to be re-published and re-read on a regular basis until policy-makers understand. Ms. Escher is soon to publish a book that I hope will educate those who are in a position to do the essential research and make the essential policies we need.

Expand full comment

It is difficult to independently assess the validity of Ms Escher's claim that the vaccine hypothesis is an idea devoid of biological plausibility that has been debunked by rigorous research. She links to the Autism and Vaccines: Read the Science page at the Autism Science Foundation's website. But most of the studies provided there are available only by subscription which most readers like me would not have. Also some links there are simply dead, and others point to articles that are no longer available (and thus presumably retracted). Some of the articles that are available for the general public to download and read have been the subject of critical posted comments or have been attacked in other published studies.

Ms Escher also links to something by Paul Offit, but Mr. Kennedy and Mr. Offut are in a he said/he said dispute. Mr. Kennedy makes a lot of claims about Mr. Offit, and Mr. Offit has a written response claiming that Kennedy is lying. No way to tell who is telling the truth or if they are both telling falsehoods (I'm not saying that either of them does not genuinely believe what he claims).

That said, some of the studies on the Autism Science Foundation website do appear credible and seem to disprove the premise that vaccines (or thimerosal) cause Autism. These are studies based on very large data sets of millions of children some vaccinated and some not, with no statistical difference in the amount of autism between the two cohorts. Also, there is an article there that purports to show by brain scans that autism is the result of a physical mis-development of the brain. However, the author appears to be basing his conclusion on post-natal brain scans and so apparently he just assumes that the mis-development shown by the scans was pre-natal. He then posits a post-natal treatment that he thinks might possibly correct or improve the developmental deviations from normal brain organization, which begs the question, "if the problem can be corrected post-natal, what is the evidence that it was not pre-natal rather than being caused post-natal?" In other words, if the brain can be rewired post-natal, then any wiring errors shown on post-natal brain scans might have been caused post-natal, rather than being a pre-natal development problem.

It seems like the debate about mercury is that Kennedy and those who claim vaccines may cause autism rely on the fact that methyl mercury (i.e. organic mercury) is known to be a harmful toxin and assume that ethyl mercury (i.e. inorganic mercury) is probably harmful too. On the other hand. Offit and those who claim that thimerosal in vaccines is not a problem claim that the reason that methyl mercury is a toxin is that it can enter inside of cells and disrupt normal cell function, while ethyl mercury (which is what is in thimerosal) cannot enter cells therefore is non-toxic. It seems like both sides are making assumptions for which they do not seem to offer proof. Kennedy assumes that since methyl mercury is toxic, ethyl mercury must be too. Offit assumes that since methyl mercury is toxic because it can enter cells while ethyl mercury cannot, ethyl mercury mercury is both not toxic and is eventually excreted by the body. In the literature cited, I am not finding proof of either assumption. Maybe someone smarter than me can point it out.

Expand full comment

You don't like and don't agree with RFK, but he's probably the best chance we have to figure out the cause and possible treatments for autism. If he gets elected, he will put real money into research looking for the cause of autism and he won't be deterred by naysayers. He thinks it will be the vaccines, but researchers will look at all the possibilities and will have the funding and latitude to do it. I'm rooting for him to get elected.

Expand full comment

Sorry if someone has already raised this. I theorize that the recent (last 50 years) growth in the prevalence oa many health problems (allergies, etc.) Might be.related to oral (as opposed to injected or Intravenous) antibiotics which must pass through the gastrointestinal system and while doing so disrupt the gut biome. Does anyone know if this has been investigated?

Expand full comment

And no one's even mentioned cellphones, 5G, or the fact that Bell Labs and ATT laced all our waterways with lead that was on the phone cables they buried across America.... Just throwing those ideas in the mix, as there are so many potential environmental culprits, along with genetic predisposition. (I've heard a genetic mutation can trigger reactions to the MRNA vaccine and that if we wanted to, we could do prenatal screenings for this...) But question: Are the autism rates rising so exponentially in less developed countries? I refused vaccines at birth for my son and went slow on the others... I'm an older mom with an older partner and the vaccine schedule is toxic overload IMHO, because if you give 5 vaccines at once, there is no way to tell what your kid is reacting to. The idea of givine a child 5 or 10 vaccines at birth is insane to me.

Expand full comment

Thank you for your cogent essay. I agree completely that contemporary wokery is unhelpful in managing the disorder. Commenting as an elderly basic neuroscientist with modest expertise in autism's causes, it seems that you perhaps once bought in to the myth that medical science advances mainly via dramatic breakthroughs. Indeed we are making progress in elucidating autism's causes, but (as with many other serious health problems) it's a really tough problem, and it's unlikely that we'll really understand autism in my lifetime, let alone have a cure for most cases. That's no reason to stop trying.

Expand full comment

Parents of children diagnosed with autism might be interested in watching this movie, about helping those with severe autism communicate https://spellersthemovie.com/watch

Expand full comment

There used to be "meaningful subcategories." The turn toward "celebrating" autism seems to have started a decade ago, which corresponds to the time when the literature phased out the term "Asperger's Syndrome". Hans Asperger had developed the diagnosis to save some children from extermination by the Nazis (explaining they were gifted and could be useful to the Reich), though he knew the rest would be murdered, and some activists wanted to "cancel" the honor of the name.

The bright but awkward now are described by the same term as the more severely challenged, and the public image of autism became the "superpower." Perhaps if the distinction between "autism" and "Aspergers" returned, it could provide better information for everyone, and more appropriate treatment for each.

Expand full comment

This is a beautifully written piece, but I think the math is convoluted. There are now 1 in 36 boys diagnosed with autism - that is only because the category now includes quirky, verbal, sometimes highly verbal people who fit into the neurodiversity category. Those 1 in 38 are NOT nonverbal boys who will never be independent.

Later in the article it states that disabling autism has been measured in California to have gone from 3,262 in 1989 to more than 160,000 in 2022. Again, this is due to a change in definition. More verbal people are in the 2022 category than the 1989, and more nonverbal people previously diagnosed as "mentally retarded" and other no longer used diagnoses and labels are now in the 2022 autism category. As it states elsewhere there has been a RECENT movement in California to identify all disabled adults who need are. People forget how large the rural areas of California are - it's not all SF and LA. And plenty of communities in urban areas were not keen to talk to the state about their disabled family member. Until the California initiative, most disabled adults were not known to the state.

As for now needing institutions for older disabled adults that we didn't need before, that is thankfully due to the longer lifespans of disabled adults.

Nonverbal autistic individuals and the resources they need are not as popular right now as neurodivergent pride. But there's a reason for this. A whole generation of kids diagnosed autistic and put into special education all their lives to learn how to act like neurotypicals ("don't talk about your special interests, sit still, look people in the eyes, don't be too honest, dress better, etc, etc" have reached young adulthood, and they are very reasonably angry about the experience.

I don't think autism is rising. The labels, diagnostic criteria, resources, understanding, and research are always shifting.

Expand full comment

“that some of us are proposing innovative hypotheses that could help explain at least part of the autism surge, relating to how some exposures could disturb the programming of our gametes”

Sadly, Ms. Escher’s has made it clear any innovative hypotheses from her will refuse to include how toxic potions promising protections against future pathogens (ie. the new definition of vaccines) injected into healthy babies and children might, “disturb the programming of our gamates”.

Expand full comment

Thank you. Very well said.

Too bad that terminology (can you say that someone is autistic, or should you say they have autism? can you use the words correction, or disorder, or disability? etc) often seems to be the main topic of discussion, instead of real help and scientific research.

Expand full comment

"It will take splitting the encompassing term into meaningful subcategories with strong internal relevance."

"Asbestos" again. There are three minerals under this umbrella, only one is dangerous.

We had Kanner's; Asperger's; and HFA five minutes ago, then the psychos(sic) changed to Spectrum BS and the wheels seem to have fallen off. Stephen Wiltshire; Temple Grandin; Jill Escher's children; me and several of my friends. None of us are the same thing, quite bloody obviously.

For DSM VI: "Neurotypicals with Late Onset I.D". Because there sure has been an explosion of numptiefication amongst the so-called "experts" and "professionals. And no, this isn't just sarcasm.

Expand full comment

// But unfortunately, the empirical evidence for truly soaring autism rates, based on objective measures, is simply overwhelming. The sweeping upward curves over the past 20–30 years can be seen in almost all sectors //

If occurrence "soared" about a quarter of a century ago, something big happened society-wise then, no? Therefore, ....

Expand full comment

Jill, your voice on this subject is powerful and gives me great hope. As such, please consider the following arguments:

1. https://www.youtube.com/watch?v=Aw16LPVnNco&t=769s "After Skool" with Dr Zach Bush: Chemical Farming and the Loss of Human Health.

2. https://www.youtube.com/watch?v=JszHrMZ7dx4&t=1s "The secret tactics Monsanto used to protect Roundup, its star product"

Expand full comment

When writing as good as this provides a diagnosis of an issue that I, my wife and 3 of our 4 children have sought to understand it’s a public service. Yes the 4th child - J -is Autistic, IQ in the 70’s. 6’5”, consistently angry, confused, friendless and jobless. When he was finally diagnosed aged 8, for a brief moment, we entertained the thought that we could now manage, mitigate and deal with it more effectively. Some of that happened but of course it never made a real difference. J knew he was loved but it was at those who loved him who he directed his rage at the most. We sought special educational needs support (we are British and live in UK) but were informed sending J to a specialist school was ‘clearly and obviously a life style choice for a middle class family’. The neurodiversity movement (cult?) suits a minority of high functioning individuals to frame it in this manner. It only serves to harm and delay serious diagnosis of a growing problem. Those who promote such BS are not much different from those who consider it the result of vaccines. Thank you for calling it out. Thank you for the public service you are performing.

Expand full comment

"We sought special educational needs support (we are British and live in UK) but were informed sending J to a specialist school was ‘clearly and obviously a life style choice for a middle class family’"

Who exactly said this and why did you apparently pay attention to, or have to pay attention to, them?

More widely, paying attention to malevolent idiots is in large part why Britain is a basket case of a multi-national state. We ought to pay less attention to malevolent idiots.

Expand full comment