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.
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.
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.
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
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.)
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.
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.
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.
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.
In pre-modern societies, children who were deemed incapable of contributing to the tribe and/or a burden on resources were left for dead. Now we force parents to care for them but provide them with inadequate resources & institutional support. Both are brutal, but I think the former practice was more humane than what we have now.
I can relate to that. But that sounds like a relatively small group. And I m thinking more about all the severe cases that you described vs people who are relatively functional and could do with simple, down to earth jobs and an overall support that comes naturally with a tighter community.. it’s the latter, described as “high functioning” by the modern language, whom I m wondering about.
Whether they could lead a normal life in a more traditional society, with simple jobs and tighter community?
I grew up on the other side of the pond in a waaaaayyy more traditional community. And I know of someone who is in her 40s now and she has seriously deteriorated way into her 20s, after she gave birth. Now, her daughter, who is 18 now has deteriorated much earlier, in her teens. Her daughter came into a drastically different society, born in the early 2000. Her mom was born in 1970s and she was able to keep it together for much longer..
And because my 1970s happened in the USSR, those were some very different 1970s, than what you know in the US.
Ours were much earthier and basic and tribe like environment. All of us, Soviet kids of the 1970s still picked berries and mushrooms in the woods and canned them with our parents in our kitchens so that we could make it through the winter with the variety of foods. Not to mention tons of other survival skills that we all thought of as a daily routine. So, how come I now know of only a one or two severely disabled cases back in the old country and nothing about the so called “high functioning on the spectrum..?”
I do not think these “high functioners” are fake. No. I think they are the high risk group who suffered because of all the post-industrial changes.
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.
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.
Penny, my daughter is 18 and I'm right behind you. I've already asked my family that - should I die who can step in to help - and they are all refusing to. There are no siblings. I am 67 and thankGod for summer camps as that's the only time I can get a break. Everything is on me and me alone. If something happens to me, she'll be out in the streets.
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.
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.
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.
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."
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.
What is the end game for these “activists?” Genuine True Believers, latching onto a cause to feel superior, other?
The medical and care needs of these people are stupefying and seeing that our beleaguered medical system can’t manage simpler cases I’m not sure the answer but sending best wishes to all the parents here who are worried about after they’re gone.
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.
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?
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.
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
Hello
That was a test
Hello, and welcome!
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.
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?
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.
Really good thought.
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..?
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.
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.
yes, I wouldn't want to take attention further away from those who are in most dire circumstances and need so much support and help..
No offense meant, but no.
Any ideas what, then?
None taken.
In pre-modern societies, children who were deemed incapable of contributing to the tribe and/or a burden on resources were left for dead. Now we force parents to care for them but provide them with inadequate resources & institutional support. Both are brutal, but I think the former practice was more humane than what we have now.
I can relate to that. But that sounds like a relatively small group. And I m thinking more about all the severe cases that you described vs people who are relatively functional and could do with simple, down to earth jobs and an overall support that comes naturally with a tighter community.. it’s the latter, described as “high functioning” by the modern language, whom I m wondering about.
Whether they could lead a normal life in a more traditional society, with simple jobs and tighter community?
I grew up on the other side of the pond in a waaaaayyy more traditional community. And I know of someone who is in her 40s now and she has seriously deteriorated way into her 20s, after she gave birth. Now, her daughter, who is 18 now has deteriorated much earlier, in her teens. Her daughter came into a drastically different society, born in the early 2000. Her mom was born in 1970s and she was able to keep it together for much longer..
And because my 1970s happened in the USSR, those were some very different 1970s, than what you know in the US.
Ours were much earthier and basic and tribe like environment. All of us, Soviet kids of the 1970s still picked berries and mushrooms in the woods and canned them with our parents in our kitchens so that we could make it through the winter with the variety of foods. Not to mention tons of other survival skills that we all thought of as a daily routine. So, how come I now know of only a one or two severely disabled cases back in the old country and nothing about the so called “high functioning on the spectrum..?”
I do not think these “high functioners” are fake. No. I think they are the high risk group who suffered because of all the post-industrial changes.
No ideas. I've been puzzling on this since my son was four. I'm out of ideas.
A 🫂
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.
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.
Penny, my daughter is 18 and I'm right behind you. I've already asked my family that - should I die who can step in to help - and they are all refusing to. There are no siblings. I am 67 and thankGod for summer camps as that's the only time I can get a break. Everything is on me and me alone. If something happens to me, she'll be out in the streets.
😭 I also hate the fact they won’t qualify for disability but are clearly disabled.
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
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.
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.
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.
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."
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.
What is the end game for these “activists?” Genuine True Believers, latching onto a cause to feel superior, other?
The medical and care needs of these people are stupefying and seeing that our beleaguered medical system can’t manage simpler cases I’m not sure the answer but sending best wishes to all the parents here who are worried about after they’re gone.
Thank you for all you do.
Why are Xtianity, Judaism, and Islam all called "Abrahamic religions"?