It was typical teenage disaster zone with books and clothes all over the place.
Alex then picked up an origami piece that rippled with many ridges, depressions, and more. He said, “It’s kinda a repetitive pattern.” You first fold the paper diagonally and then you fold the lateral folds.
It’s quite complicated. Alex is a tall, slim teenager with black hair and sharp eyes. His brain can be difficult because of the way it works.
Alex is autistic.
Alex’s parents, like many other parents of autistic children, have spent years searching for a school, therapist or doctor who could help.
It’s a bit like a hot potato. What is the role of the school in counseling me? What is the role of the pediatrician? “… How do I figure this out? Alex’s mother, Dr. Mai Pham. “I believe he believed that we were always on his side. He could see that sometimes we were helpless.
In recent decades, the U.S. has made significant progress in raising awareness about autism and other developmental disabilities. As many as 1 out of 20 Americans are affected by them.
New therapies, improved screening and the emergence of specialty clinics mean that care is now available in a way that was impossible a generation ago. Experts and advocates claim that the health care system continues to fail millions of Americans, even though it was created when they were children.
Alex: Get to Know Him
Alex was born in a world where the frustrations of the world were abstracted by Pham and David Roodman. David Roodman is a Harvard University-trained policy analysis.
There were indications that Alex, their second son, was different. Pham recalls taking Alex on a trip at 3 months of age.
Pham stated that he had placed him on the ground in a Miami hotel room thinking, “OK, we only have five minutes before the baby starts acting up,” He spent 20 minutes sitting almost still, his eyes only scanning the shadows of the palm frond on walls.
Alex struggled to connect with his classmates in preschool and became angry when his classmates weren’t interested in the topics he was talking about.
Pham and Roodman remained calm and reassured by their pediatrician, and other medical professionals that there was no reason to be alarmed. Pham and Roodman were not warned about the difficulties ahead, even after Alex was diagnosed with autism in a school assessment.
Transitions can be difficult
Alex enrolled in a private middle school, which specializes in helping students similar to him as he grew older. According to his parents, he did well.
However, the transition from high school was more challenging. Alex was a talented math student but struggled to understand subjects such as English and history.
His autism fuelled crippling anxiety. Alex struggled to sleep and would pick at his hands until they bled. There were many breakdowns.
“He might smash the wall with things. … Pham stated that he had broken the tip of a knife. “He always felt contrite afterward. He didn’t have any other way to express his frustration.
Pham believed she would be more prepared than most parents to seek help. Pham is an internist with Harvard and Johns Hopkins Universities. She was also a former senior Medicare and Medicaid official.
Pham searched for help by tapping into a large professional and social network in Washington, D.C. According to one analysis , the metropolitan area has the highest concentration of child- and adolescent psychiatrists anywhere in the U.S.
Pham stated that Alex was struggling and that their family was losing. Pham said that Alex was being treated by psychiatrists, pediatricians and therapists who tried to minimize his symptoms or moved him to another doctor.
This is a common experience, according to Monica Adler Werner, a counselor working with autistic patients in Washington, D.C.
Long waiting lists for therapy are still the norm in the United States. Medical bills can run into the tens of thousands.
Pham stated, “We were fortunate we could afford these services.” “We have insurance for our health. … I used to have the type of job that I could drive 50 minutes each way to get my son to therapy, and I did it once or twice per week.”
Millions more Americans are facing even greater barriers to healthcare. Rural families often have to travel long distances for care. The U.S. healthcare system is still inequitable for many Hispanic and Black families.
According to a 2018 Pediatrics article, parents of autistic children are 10 times more likely to state that they’re frustrated trying to obtain services than parents of other children.
Disabilities training for doctors
Kristin Sohl, a University of Missouri pediatrician, stated that primary care physicians could be a convenient option for many families if they had better training. Sohl stated, “We have to make it accessible so people can access what they need when they need it.”
Many physicians are not equipped to provide this type of care.
Only 40% of respondents to a survey said that they are as confident in their care for patients with disabilities as they are for other patients. About half of respondents strongly agreed that they are open to patients with disabilities.
One barrier is still training. Although 16 million Americans are affected by autism, or other intellectual or developmental disabilities, this subject is only a small part the majority of medical schools’ curriculum.
Sohl and others also point out that the American health care system is known for referring patients to specialists. Sohl stated, “It’s so hierarchical.”
Pham has made it his life’s work to change that.
In 2020, she quit her job as a senior health insurance executive to create the Institute for Exceptional Care. The nonprofit is designed to change the way doctors are paid and trained so that they can spend more time with people with disabilities than rushing through appointments due to billing pressures.
Pham stated that “we’ve made enormous investments in the science, and in some cases the clinical aspects” of care. “But, we haven’t considered how to make any part of that sustainable.”
Pham stated that this is especially important as so many patients age and develop medical conditions like diabetes, heart disease, and dementia.
Pham stated that communication with someone like my son and managing chronic conditions for him will be different. “The health system doesn’t have that in mind.”
Alex received help from a specialist. Pham met Adler Werner through friends. He became an “autism coach” for Alex’s family, helping them understand the difficulties Alex was facing.
Adler Werner is now a cognitive behavior therapist. His goal was to empower Alex so that he could recognize his strengths and learn tools to manage difficult tasks such as communicating verbally and managing tension.
Adler Werner stated, “What we want is to work with young people to enable them to understand and accept their differences, own them, and not have them seen as character flaws.” “Alexander is truly extraordinary and unbelievably fascinating.”
Alex was in Vermont when I met him. He is enrolled in a program that helps teens like him to learn skills that allow them to live independently. He is studying math at the University of Vermont. He’s been hiking and rock climbing with his Green Mountain classmates.
Alex stated that he is enjoying his time. He said, “I’m learning muscles I didn’t know I had.”
Pham and her husband were both encouraged by Alex’s progress. They worry about Alex’s future in a system of health care that isn’t ready for him.
