Alexander Ludman was preparing for a gap year and cleaning up his room when he met him at his family’s Washington, DC townhouse a year before college.
The room was a typical teenage disaster zone, with clothes and books scattered all over the place.
Then Alex got a wavy origami sculpture with dozens of ridges and pits. “It’s a kind of iterative pattern,” he said. “First, fold it diagonally, fold it sideways, and cut the paper in half.”
It’s pretty complicated. Alex, a slim teenager with long black hair and sharp eyes, focuses on this. However, the way his brain works can be difficult.
Alex has autism.
And like many parents of autistic children, Alex’s mothers and fathers have spent years looking for doctors, schools and therapists to help.
“I think he always believed we were on his side, but he could also see us sometimes helpless,” said Alex’s mother, Dr. Maifam. “It’s a bit like a hot potato. Is the school supposed to advise me? Is the pediatrician supposed to advise me? … Am I supposed to understand it? ? “
The United States has made great strides in recent decades in raising awareness of autism and other intellectual and developmental disorders that affect 1 in 20 Americans.
Screening, new therapies, and improvements in fast-growing specialty clinics have made available care that was unthinkable a generation ago. But the health system has still failed millions of Americans since they were children, experts and supporters say.
When Alex was born, this world and its frustration was an abstraction for Harvard-trained policy analyst Fam and her husband, David Rodman.
There were signs that their second child was a little different. Fam remembers Alex taking him on a trip when she was three months old.
“In a hotel room in Miami, we put him on the floor and thought,’OK, it’s five minutes before the baby acts,'” Fam said. “He actually spent 20 minutes almost stationary. Only his eyes were tracking the shadows of the palm leaves on the wall.”
Before school, Alex struggled to connect with other kids and was sometimes excited that his classmates didn’t seem to be interested in what he wanted to talk about.
Still, Fam and Ludman were assured by their pediatricians and others that there was no reason to be vigilant. Even when Alex was proved to be autistic by a school assessment, Fam and Ludman received little warning about future challenges.
As Alex grew older, he attended a private junior high school specializing in working with students like him. According to his parents, he went well.
However, the transition to high school turned out to be more difficult. Alex is a talented math student, but he is increasingly struggling with subjects that need to explain the perspectives of others, such as English and history.
His autism fueled terrible anxiety. Alex had a hard time sleeping and he picked it by hand until it was bloody. He had frequent breakdowns.
“He may hit the wall with something … he broke the tip of the knife,” Fam said. “He has always felt regret since then. There was no other way to properly express how frustrated he was.”
Fam thought he was more ready to find help than most parents. She is a physician and a former Medicare and Medicaid senior employee with a degree from Harvard University and Johns Hopkins University.
According to one analysis, Fam scrambled for help and used an extensive social and professional network around Washington, DC. The metropolitan area boasts the country’s most concentrated child and adolescent psychiatrists.
Still, when Alex struggled, Fam said, their family was lost. Many times, pediatricians, psychiatrists, and therapists have minimized Alex’s symptoms or shuffled him to someone else.
“This is a common experience,” said Monica Adler Werner, a counselor dealing with autistic patients around Washington, DC. “Odyssey that parents must continue to find what their children need.” Is really disappointing for our society. ” ..
The long waiting list for treatment remains standard nationwide. So are medical costs, which can reach tens of thousands of dollars.
“We were fortunate to be able to provide these services,” Fam said. “We have health insurance …. I used to jump in the car once or twice a week and drive for 50 minutes each way to take him to treatment.”
Millions of Americans face even greater barriers to care. Rural families often travel for hours for service. Many black and Hispanic families face lasting inequality in the US healthcare system.
Nationally, parents of autistic children are ten times more likely to say they are “normally or always” dissatisfied with their efforts to get service.
Dr. Kristin Sohl, a pediatrician who teaches these skills at the University of Missouri, said that primary care physicians (a convenient option for many families) are part of these gaps if doctors are better trained. Said that it can be filled. “We need to make this accessible so that people can access what they need, when and where they need it,” Sohl said.
However, many doctors feel that they are not ready to provide this care.
In one survey, only 40% said they were convinced that the care of patients with disabilities was as good as other patients. Only about half strongly agreed to welcome patients with disabilities.
Training remains one barrier. Although as many as 16 million Americans have autism or other intellectual or developmental disabilities, this subject is only a small part of the curriculum of most medical schools.
Another obstacle, according to Sohl et al., Is that American medical care tends to simply refer patients to specialists. “It’s very hierarchical,” Saul said.
Changing that has become the job of My Fam’s life.
She quit her job at a major health insurance company in 2020 and started the Institute for Exceptional Care. Nonprofits aim to review doctor training and payment methods so that they can spend more time with patients with disabilities, rather than rushing to visit due to billing pressure. It is said that.
“We have made huge investments in science, and in a sense the clinical aspects of care,” Fam said. “But I’m not thinking about how to make it sustainable.”
This is especially important, as so many patients are aging and developing conditions such as diabetes, heart disease and dementia.
“How to communicate with someone like my son, or how to manage his chronic condition, needs to be different,” Fam said. “The healthcare system doesn’t think about it.”
Alex’s help finally came from an expert. Adler Werner, which Fam found through a friend, became what Fam described as an “autistic coach” and helped the family understand what Alex was experiencing.
Adler Werner, now a cognitive-behavioral therapist, empowers Alex to understand Alex’s strengths and develop tools for navigating difficult tasks such as verbal communication and stress management. I focused on that.
“What we want to do is work with young people to understand, accept and own their differences so they don’t see them as character flaws,” explains Adler Werner. did. “Alexander is really extraordinary and incredibly interesting.”
I caught up with Alex in Vermont a while back. He participates in programs that help teens like him develop the skills to live independently. He is taking math at the University of Vermont. He rock climbs and hikes with his classmates in the Green Mountains.
Alex said he was having fun. “I’m learning about muscles I didn’t know I had,” he said.
Fam and her husband were encouraged by his progress. But they are worried about what’s ahead for Alex in a healthcare system that hasn’t been prepared for him yet.
[Editor’s note: KHN aims to use “person-first” language regarding people with autism – describing what they have and not what they are — except when a preference for “identity-first” language is known, such as “he is autistic.” This article reflects that nuance and respects the wishes of the family profiled.]
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