Yves here. It seems noteworthy that NPR, which also republished this Kaiser Health News article, used a markedly different spin in its headline: “Kids with autism struggle to adapt to adulthood. One doctor is trying to change that.” God forbid the press highlight failings in our best of all possible worlds health care system.
Two friends independently observed, before this story came out, that American society hates (or at best is pathologically indifferent to) children and the elderly. To that list, as this article makes clear, you can add the disabled.1
Some of the displays are appalling. One of the tenants had a regular visitor who limped and used a cane. Male, around 50, otherwise looked very hale.
I was in the elevator when one of the female tenants (middle aged, always well dressed) accosted the man with the cane and asked him when was he going to do something about it, as in his limp. This was clearly a demand (she spoke with force) and not an inept effort to converse. She thought she had the right to try to humiliate him over her now obvious discomfort with his physical difficulty. I was I was so horrified on his behalf that I didn’t know what to say.
Admittedly, many routinely offer to assist those with limitations, like with packages or loading walkers into cars, but I have a sneaking suspicion that the mean-spiritedness is more common than most of us (who have the good fortune not to be on the receiving end) realize.
And back to the article. Here we have a well recognized developmental issue, which is also in many cases treatable (as in autistic kids can be steered towards careers and hobbies that use their capabilities, and also taught how to cope with their difficulties in dealing with emotions). And plenty of kids of affluent parents have it, so one would think their means and knowledge of how to work the system would get proper programs put in place. Yet we see otherwise, perhaps because autism is treated as falling between the stools of a medical versus an education/skill acquisition need.
Even worse, notice that many of the supposed experts that the protagonist, Dr. Mai Pham, sought out, tried to make her autistic son someone else’s problem. that a significant percentage of MDs are Or maybe this gap is yet another symptom of advanced neoliberalism: everyone is supposed to cope on their own, the hell with helping each other.
By Noam N. Levey, Kaiser Health News Senior Correspondent who previously worked at the Los Angeles Times and the San Jose Mercury News and has been published in Health Affairs, JAMA and the Milbank Quarterly. Originally published at Kaiser Health News
Alexander Roodman was packing up his room, preparing for a gap year before college, when I met him at his family’s Washington, D.C., townhouse.
The room was a typical teenage disaster zone, with clothes and books strewn everywhere.
Then, Alex picked up an origami sculpture that rippled with dozens of ridges and depressions. “It’s kind of a repetitive pattern,” he said. “First, you make the diagonal folds and these lateral folds to cut the paper in half.”
It’s pretty complicated. Alex, a slim teenager with long black hair and penetrating eyes, is gifted with the focus for this. But the way his brain works can be a challenge.
Alex is autistic.
And like many parents of children with autism, Alex’s mother and father have spent years trying to find a doctor or school or therapist who could help.
“I think he always believed we were on his side. But he could also see that we were sometimes helpless,” said Dr. Mai Pham, Alex’s mother. “It’s a little bit like hot potato. Is the school supposed to counsel me? Is the pediatrician supposed to counsel me? … Am I supposed to figure that out?”
The U.S. has made major strides in recent decades in raising awareness about autism and other intellectual and developmental disabilities, which affect as many as 1 in 20 Americans.
Improvements in screening, new therapies, and burgeoning specialty clinics have made available care that was unthinkable a generation ago. But the health care system is still failing millions of Americans from the time they are children, experts and advocates say.
When Alex was born, this world and its frustrations were an abstraction for Pham and her husband, David Roodman, a Harvard-trained policy analyst.
There were signs their second child was a little different. Pham remembers taking Alex on a trip when he was 3 months old.
“In a hotel room in Miami, we put him on the floor thinking, ‘OK, we have five minutes now before the baby acts up,’” Pham said. “He actually spent 20 minutes being nearly still, just his eyes tracking the shadows of a palm frond on the walls.”
In preschool, Alex had difficulty connecting with other kids and sometimes became agitated when classmates didn’t seem interested in what he wanted to talk about.
Still, Pham and Roodman were assured by their pediatrician and others that there was no cause for alarm. Even when a school assessment established that Alex was autistic, Pham and Roodman received few warnings about the challenges ahead.
As Alex got older, he attended a private middle school that specializes in working with students like him. He did well, according to his parents
The transition to high school proved more difficult, however. Although a gifted math student, Alex increasingly struggled with subjects like English and history that require explaining the perspective of others.
His autism fueled crippling anxiety. Alex had trouble sleeping and picked at his hands until they bled. There were frequent breakdowns.
“He might slam the wall with things. … He broke the tip off a knife,” Pham said. “He always felt contrite afterward. He just didn’t have any other avenue for, you know, adequately expressing how frustrated he was.”
Pham thought she’d be better prepared than most parents to find help. She’s an internist and former senior Medicare and Medicaid official with degrees from Harvard and Johns Hopkins.
Pham scrambled to find help, tapping a wide social and professional network around Washington, D.C. The metropolitan area boasts the highest concentration of child and adolescent psychiatrists in the country, 10 times the level in some rural parts of the country, according to one analysis.
Yet, as Alex struggled, Pham said, their family was lost. Time and again, pediatricians, psychiatrists, and therapists minimized Alex’s symptoms or shuffled him to someone else.
That’s a common experience, said Monica Adler Werner, a counselor who works with patients with autism around Washington, D.C. “The odyssey that parents have to go on in order to find what their children need is really a shame of our society,” she said.
Long waitlists for therapy remain the norm nationwide. So are medical bills that can reach tens of thousands of dollars.
“We were lucky we could afford those services,” Pham said. “We have health insurance. … I had the kind of jobs where I could hop in the car once or twice a week and drive 50 minutes each way to get him to therapy.”
Millions of Americans face even bigger barriers to care. Families in rural areas often travel hours for services. Many Black and Hispanic families face persistent inequities in the U.S. health care system.
Nationally, parents of children with autism are 10 times as likely to say they’re “usually or always” frustrated in their efforts to get services.
Primary care physicians — a convenient option for many families — could fill some of those gaps if the doctors had better training, said Dr. Kristin Sohl, a pediatrician who teaches these skills at the University of Missouri. “We’ve got to make this accessible so that people can have access to what they need when and where they need it,” Sohl said.
But many physicians feel ill equipped to provide this care.
In one survey, just 40% said they were very confident that their care for patients with disabilities was as good as for other patients. Only about half strongly agreed that they welcome patients with a disability.
Training remains one barrier. Even though as many as 16 million Americans have autism or another intellectual or developmental disability, the subject is a small part of the curriculum at most medical schools.
Another obstacle, Sohl and others say, is a tendency in American health care to simply refer patients to specialists. “It’s so hierarchical,” Sohl said.
Changing that has become Mai Pham’s life’s work.
She quit her job at a major health insurer in 2020 to start Institute for Exceptional Care. The nonprofit aims to overhaul the way doctors are trained and paid so they can spend more time with patients with disabilities, instead of rushing through visits because of billing pressures.
“We’ve made huge investments in the science and in some ways the clinical aspects of care,” Pham said. “But we haven’t thought about how to make any of that sustainable.”
Pham said that is particularly important because so many patients are aging — and developing medical conditions such as diabetes, heart disease, and dementia.
“How you communicate to someone like my son or how you manage chronic conditions for him will need to be different,” Pham said. “The health system hasn’t thought about that.”
Help for Alex ultimately came from a specialist. Adler Werner, whom Pham found through friends, became what Pham described as an “autism coach,” helping the family understand what Alex was experiencing.
Adler Werner, now a cognitive behavioral therapist, focused on empowering Alex so he could appreciate his strengths and develop tools to navigate challenging tasks like communicating verbally and managing stress.
“What we want to be doing is working with young people to allow them to understand their differences, accept and own them, not have them be seen … as character flaws,” Adler Werner explained. “Alexander is really extraordinary and unbelievably interesting.”
I caught up with Alex not long ago in Vermont. He’s at a program that helps teenagers like him develop skills to live independently. He’s taking math at the University of Vermont. He’s been rock climbing and hiking with classmates in the Green Mountains.
Alex said he’s been enjoying himself. “I’m learning about muscles I never knew I had,” he said.
Pham and her husband have been cheered by his progress. But they still worry about what’s ahead for Alex in a health care system that’s unprepared for him.
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Autism, defined by the medical profession as a disorder (Autism Spectrum Disorder or ASD) is not easily diagnosed, like say Downe’s Syndrome. In the US, with its broken healthcare system, getting help is obviously a nightmare. In other countries things are not so hard, but still not easy. “Diagnosis” with ASD is a stigmatising event.
The way a lot of boys show autism traits is more noticeable than it is in girls. Doctors have almost exclusively used boys to research autism and so the male presentation is taken as the norm. And what treatments there are have been tailored to boys.
For example, high functioning autistic boys have more trouble with social cues than girls. So it has been accepted that fewer girls are autistic and this is wrong. There are a lot of undiagnosed female autistics who get no help at all.
We have a young autistic male in our extended family, diagnosed as borderline ASD. He regularly tops his classes in an ordinary high school. He finds the social stuff hard because he is literal in his understanding of the world, and so there is a communication gap with non-autistic kids.
Autistic teens have differently wired brains https://www.sciencedaily.com/releases/2021/03/210312132618.htm But the stigmatising treatment they receive leaves them with very poor mental health because of being made fun of and being excluded. Teachers are not necessarily better in this regard than peers.
There is now a growing movement of high functioning adults with autism who are making waves in academia, changing the framing from “disability” to “differences” in neurology and and communication between autistic and non-autistic people. And highlighting strengths that autistics have by virtue of their amazing brains. https://www.theguardian.com/science/blog/2015/jul/16/autism-doesnt-have-to-be-viewed-as-a-disability-or-disorder
Think Temple Grandin and her 3D abilities which are awesome.
Autistic researchers like Dr Damian Milton – https://noncompliantpodcast.com/tag/damian-milton/ and https://www.reframingautism.com.au/miltons-double-empathy-problem-a-summary-for-non-academics/
Like Dr Jac den Houting – https://www.youtube.com/watch?v=A1AUdaH-EPM
Like Dr Monique Botha – https://www.youtube.com/watch?v=NCAErePScO0
Autistic adults are finding communities of like souls with whom they can interact just as easily as the non-autistic adults do with others the same as them.
My hope is that boys like Alex can find positive autistic role models as more research is done, and that their abilities are not seen as circus tricks, but as evidence of superior intelligence.
As Temple Grandin has said, if there were no autistic people then human beings would still be sitting around the fire outside of their caves, socialising.
Good outline. This is another reason a national jobs guarantee would make sense. Some autistics are very high functioning and can work as surgeons even. Others are lower functioning. Outsourcing simpler work to the third world or China put many autistics in a tough, dependent position.
“And plenty of kids of affluent parents have it, so one would think their means and knowledge of how to work the system would get proper programs put in place.”
*************
About a year ago, I heard Sam Harris, Stanford neuroscientist and podcaster, interview a Doctor. At one point, Harris started asking the Doctor for personal advice on how to navigate the system. I was amazed that a person with Harris’ creds and connections would be so at sea about healthcare.
This raises two questions:
1. Have those at the higher levels of society actually swallowed the Snake Oil? Do they actually believe Doc knows best? Do they willingly comply and accept whatever Big Medicine asks them to do or be done to them?
2. If the answer to 1 is No, no and no then were do they go to get honest, competent, one-size-does-not-fit-all healthcare? Is there a Medical Monastery somewhere for the Elite where they can get treatments from proficient, sane and ethical people who have not been trained and programmed by Big Medicine?
In connection with the above, I find it difficult to believe that the Elite are swallowing the Big Medicine Covid Pill. Injected, I think not. Elon Musk comes to mind.
I speak with experience on this subject. A few years back I had a cardio event which necessitated a ten day interaction with Big Med. Fortunately, I had a spouse who intensively researched the situation and based on that I refused the cardio intervention and extensive Big Pharma treatments they recommended. Ten years later, relying on alternative treatments and Doctors, all is well. One of the many authorities I read on this subject was Dr. Nortin Hadler, Professor at UNC:
“Hadler NM. The Last Well Person. How to stay well despite the health-care system. Montreal, McGill-Queens University Press.”
https://www.med.unc.edu/medicine/directory/nortin-m-hadler/
Good luck to all sailing the Healthcare Waters, as we all must do.
thank you maritimer. i’ll be ordering that book on interlibrary loan.
alas, one of the biggest problems with using alternative treatments and doctors is the lack of insurance coverage.
it remains an option only for those with deep enough pockets.
at a certain point, aging over the years with chronic health problems that have long prevented me from working full-time anywhere but home, i could no longer afford the cost of alternative healthcare, and since then have had to rely on the healthcare available within the system–fortunately, medicaid has provided for this, so far.
i often wonder what my life would be like if i had been able to continue on with the very helpful alternative healthcare providers and supplements i had been using–which literally bankrupted me.
Thanks! I have just ordered Hadler’s books “The Last Well Person” and “Rethinking Aging” from betterworldbooks.com. Both used copies “in excellent condition” for $3.98 each.
My late husband, the son of overweight parents, struggled with his weight throughout his life. Regarding the medical profession, he used to say “If you’re overweight or you smoke, doctors basically tell you you’re on your own.” He was on a whole raft of medications for heart disease. I took the book “Worst Pills, Best Pills” with me when we had an appointment with his cardiologist because according to the book, my husband had been prescribed a couple of drugs that were contraindicated with other medications he was already taking, and I wanted to ask the doctor about it. When he saw the book, the great man said “You’d be better off with a diet cookbook than that one.” Clearly, the doctor felt my husband’s weight was my fault. Little did he know we’d only been married for a couple of years and Larry had been overweight for at least 45 years when I first met him. He was the one of the smartest, funniest men I ever met, and I loved him dearly. Isn’t that what counts? Well, not to that doctor, it wasn’t. Larry and I had a wonderful life together, but only for a few years.
A couple of years later, a Kaiser internist (Kaiser was the only insurance we could get because Larry had a pre-existing heart condition) refused to refer him to a cardiologist when he was having unusual heart symptoms and said “I want you to follow this diet. You just need to lose weight.” Larry went on the diet and began to lose weight. A month later, he died of a massive heart attack (never having seen the cardiologist again, but weighing less than the month before.)
I’ve been an advocate and activist for single-payer health care ever since. But for myself, I just try to stay away from doctors. As I get older, that’s getting harder.
Im so sorry for your loss.
Similar experience, my mother kept complaining of stomach pains so the doctor prescribed something, two weeks later she’s in the ER with a tumor blocking her bile duct.
I gave up smoking 15 years ago thru a program offered thru my healthcare plan and yet every time I go to the doctor, a nurse still asks how much I smoke. And each time I still correct the nurse. Apparently once a smoker always a smoker.
May I add an anecdote to Yves elevator story? I use a wheelchair and drive a lift equipped van. I was told last year by my neighbor while he watched me enter the van in preparation for driving myself that, “look at you doing all that, a person looking at you would think you can’t even brush your teeth by yourself and here you are driving.” His intention was a compliment. Bill is actually a nice guy who has also insisted on carrying my trash for me which he means as helping but I see as a message about his belief regarding my lack of ability to do things. But it is a typical belief regarding what a wheelchair using person is capable of.
I can verify the medical mess and lack of help that most people who are “different” face. My correct diagnoses are osteogenesis imperfecta, dyslexia and dyscalculia. I may also be on the autism spectrum. I have over the years been diagnosed as clumsy to explain the many broken bones, retarded/defiant/lazy to explain the struggle to learn to read and do math. I gave up trying to figure out if I was on the spectrum.
Yes, I am old enough to have been diagnosed as “retarded”. It used to be an allowed word in polite society. I have lived through a number of language changes starting with crippled moving on to the now currently correct differently abled. Those sorts of labels are a different topic though.
The right medical diagnosis/label is essential in our non system of a system. We don’t ever start with a person’s functional limitations and figure out work arounds even though that is the only practical way to move forward. For example, I gave up trying to actually read. Instead, learned the shapes of words and the meanings attached to specific shapes. To this day, I cannot spell and often mispronounce words. I am also a published author in the legal field.
And in a Catch 22, having a diagnosis/label of some sort on your record is often just a way to deny someone access to a service, education, treatment, or benefit. I myself was expelled from UCLA Law School back in the day because of my record of being disabled. I got my JD elsewhere and by then was highly motivated which led me to become a civil rights atty who wrote parts of the Americans with Disabilities Act language. More recently while in the hospital last year due to extreme back pain, I was told by the Orthopedics Chief that I was wrong to request an MRI for a possible fractured vertebrae and that really I just needed some psyc meds and a counselor. Once escaping from the hospital, I got the MRI and yes, the vertebrae was broken. Doctors routinely dismiss information coming from the disabled person in my experience.
Yves and commentators are right. The system is designed to first deny anything is wrong, then pass the issue to someone else, and, if forced to, will finally cough up a diagnosis which then becomes yet another barrier. It is almost as if once one receives a diagnosis, one becomes a patient in all parts of life. Patients are categorized as damaged/incapable and therefore needing someone of expertise from the PMC class to step in and run their life. Yes. The PMC wrecks yet another chunk of humanity.
Ana in Sacramento
That leapt oeut. It describes much of the US’ “pass the buck” management style, and applies in many many fields.
For example: 737 Max.
I am very moved by your story, Ana. In her 20s, my daughter was temporarily in a wheelchair due to injuries sustained in an accident. She got a quick lesson in non-personhood the first time friends took her out to a restaurant and the waitress turned to one of the friends, indicated my daughter, and asked “And what would she like?”
Kudos to you for your guts and persistence, Ana!
Ana, thank you for sharing your story. My spouse is dyslexic and is on the autism spectrum. He is, as well, physically ‘clumsy,’ as in walking somewhat awkwardly and being totally unable to hear a musical beat. He dances anyway :-) One thing he excels at is bicycling; he started early in life going on long solo rides. When we met (in a bike club) he was famous for riding hundreds of miles, with a water bottle and a couple of avocados stuffed in the pockets of his bike jersey.
The child of a truck driver and ‘housewife,’ he was on the ‘manual labor’ track in school, having real difficulties reading. Until a high school math teacher realized he was extremely bright and suggested engineering and college. But, according to my husband, his dyslexia and autism were completely undiagnosed, until I started asking questions.
I envy his ability to focus, although it sometimes is rage-causing. I, on the other hand, flit from subject to subject and project to project. He now can laugh about his total lack of spelling ability. Computers and spell-check have completely changed his life. And, he still constantly asks me how to spell what to me are ‘easy’ words.
I don’t know how early diagnosis, and acceptance, of his different ‘wiring’ would have changed his life.
My son turns 8 this week. He is autistic. High functioning, out going and happy. Goes to public school. Although the staff and teachers have plenty of autistic kids or other developmental delays, they still don’t know what to do with these kids sometimes. My son last week got upset and had a meltdown. To discpline him, he had in school suspension. In second grade, that is sitting in office of the school and doing work. My wife and I explained that he probably isn’t going to see this as punishment, and will like it. He did. Blew through all the work. Chatted with the adults working in office and visitors. He had a great day. Interacting with older people than himself is easier than interacting with his peers.
We are lucky to afford therapy for my son. We spend more on therapy than our mortgage. Insurance covers 3 sessions per year. 3!? Wtf. He has 2 sessions per week. Social and ABA. So many parents don’t know they can get more assistance from public schools. Few schools promote it or drag feet. When I ran a restaurant, I saw so many of bussers undiagnosed who were on the spectrum. The one positive thing I see is how other kids today view kids on the spectrum or with other challenges. Kids are 100 times more accepting/understanding then when I was a kid. Maybe that will make things better.
I’m very close to a number of people on the spectrum and I may be a bit that way myself. I few comments:
Americans are optimists and want to believe every problem has a solution. And I’ve know enough parents of spectrum kids to know why they are desperate for an answer.
But both the diagnosis and the condition are very indistinct. There are no edges just gradients. And except for cognitive therapy and sympathetic teachers I don’t know of anything that works- and neither of these are really medical. So parents who see this as a treatable disease or condition are bound to be disappointed by doctors because this is really not a disease with a cure.
And being optimists, we write articles about the parents faced with the issue. And the “solution” (almost always mentioned more than 2/3 into the article as in this piece), is to create a non-profit which wants more public money spent on the issue. The obvious problems- every dollar spent on one thing is taken away from another and one disruptive kid in a class can make it hard for the 20 other kids to learn- are ignored. As I said, we’re optimists. And if you’ve seen the level of family disruption a spectrum kid can cause, you’ve got to have sympathy with the parents.
But an article headlined “This Doctor Thought She Could Navigate US Health Care. Then Her Autistic Son Needed Help.” assumes that if “I can only navigate the system” the problem can be solved. I’m an optometrist, but I’m not sure navigation the system is the issue. I’d like to see a more international perspective of how other liberal, democratic nations see and deal with the issue.
As an aside, we seem to be seeing many more such kids. Is this a consequence of the assortative mating we have that delays marriage and moves mate selection from “the one next door” to “the one like me I met in my PHD program”?
The most successful far-spectrum kid I know went from “My only friend was a toy talking robot” to a PHD program in CS and a crazy-but-attentive spouse-equivalent… so there is hope.
Dave in Austin says: “I’d like to see a more international perspective of how other liberal, democratic nations see and deal with the issue.”
I’d like to see how health care systems in other “liberal, democratic” countries handle issues related to autism, too… although I’m not sure the USA fits in that category. All the other “liberal, democratic” countries and many that are neither provide universal health care, with the higher income countries and many lower income ones having healthier populations and significantly longer life expectancies.
Its true that there is no cure for autism. In my experience in working with many persons with it or who seem to have it, knowledge of the co-morbidity (thank you Covid for this fancy word) of gut dysbiosis can often help to some degree.
For those of you who have someone you care about with this issue, I strongly suggest doing some research inputting “autism and gut dysbiosis” and “autism and methylation” in the search engine of your choice. When these are issues along with autism in a specific individual, I have seen the improvements it can bring. I know its yet another thing doctors have no clue about so you are on your own but it really can bring some help to some of the people who are on the spectrum.
I also strongly suggest joining a local or online group for two reasons. First, others have done this research and can give you an immediate head start. Second, its a huge relief to find others who are rowing the same boat and thus understand what is going on and who can suggest specific solutions, service providers and medical people for problems that are not unique to you or your loved one.
Ana in Sacramento
Here in Toronto it’s The Geneva Centre, this is what they do. When they were my client 30+ years ago it was mostly kids, their parents, and training social workers but they seem to have branched out now.