The Autism and ADHD Tsunami
The system can't keep up.
Photo by National Cancer Institute on Unsplash
Living in Northern New Jersey about 30 minutes from midtown Manhattan means that I reside in the nation’s capital for pizza and bagels. (Don’t even talk to me, Chicago People, about your pizza.) We also have the best medical care. If you have a serious problem, like colon cancer or a bum ticker, you come here to get it fixed. Yet, these bountiful medical facilities cannot keep up with the pace of autism and ADHD.
With 1 in 36 with autism, there are simply not enough medical personnel to evaluate every one-year old child who is flapping their hands and exhibiting other tell-tale warning signs. When parents call their local neurologist or development pediatrician panicking because their kid isn’t hitting important milestones, they are told that there is a two-year waiting list. Elsewhere in this country, that list is even longer.
On average, children and their families must wait three years from the time of their first concern to an autism assessment, due the overwhelming demands. And that’s not the only bottle neck. Schools can’t keep up with demand either. Just in New York City, more than 700 special needs children do not have access to pre-school, because there aren’t enough seats. Therapists, who help children with anxiety and depression, also have long waitlists. We are facing a tsunami of needs among children in this country, and our medical and education systems are drowning.
Autism and ADHD Rates
It’s no secret that autism and ADHD rates have risen in recent years, but no one anticipated the numbers that we are seeing today. In just 20 years, America’s autism rates have gone from 1 in 150 to 1 in 36. In California, the rate is 1 in 22, which means that we should expect the rates to continue to rise nation-wide.
The autism rates have probably risen mostly due to increased awareness and decreased stigma. Some researchers also point to assortative mating (smart, slightly autistic people marry other smart, slightly autistic people), maternal stress, older parents, and toxicity in our environment. I would advice all young people, especially with a family history of anxiety, math talents, and sensory issues, to have children before age 35, move to a bucolic state, and do a very easy job.
One in nine kids are diagnosed with ADHD. Experts say that these numbers are due to growing awareness among parents, who take their children to the right doctors. One in 10 has an anxiety problem. Behavior problems in schools are skyrocketing, a growing problem that only got worse during the pandemic.
While it’s important to provide the data behind this phenomenon, we must go beyond abstract labels and graphs and talk about how these disabilities impact the individuals, and how the systems are failing them. Those numbers are alarming and upsetting, because we’re talking about suffering kids. Coping with attentional issues, stress, anxiety, school failure, and loneliness is hard stuff, and our systems are failing them.
Why Delays Matter
The standard, if somewhat controversial, therapy for children with autism is Applied Behavior Analysis (ABA). For 10-40 hours a week, children work intensely with a licensed ABA therapist, who rewards for good behaviors, increases social interactions, and improves focus. The best results happen when these services are provided between age 1 and 4. Research shows that ABA is moderately to highly effective.
Yet, without a formal diagnosis of autism, health insurance will not cover the standard practice of intensive therapy for these autistic children. The costs are so prohibitive that parents cannot cover the costs on their own. And meanwhile, time ticks, kids get older, and they miss out on the getting the right help in the formative years.
Can you imagine a patient with cancer being put on a two-year waitlist? No, but somehow it’s okay for us to do that to children.
Compounding to the waitlist problem is health insurance. Researchers have found that almost 1/3 of the doctors that diagnosis autism don’t accept standard health insurance, and less than half accept Medicaid. So, even if you get to that front of that waitlist, you might have to spend thousands of dollars out of pocket for that initial evaluation. Typically, doctors expect to do check ups every six months, especially if they need to prescribe medication, so costs will only increase.
The waitlists to see a therapist for anxiety or depression are equally huge. Parents tell me that some hospitals have given up maintaining a waitlist and advise parents to call every week to see if an appointment has opened up. The system cannot keep up with demand.
While treatment for ADHD and mental health issues is less intensive than for autism, insurance still needs to cover medication and therapy. Later, the students may require special services in their education. The long wait time for the diagnosis means a lag in getting the right help and more time suffering.
The Schools
After age three, public schools are expected to provide supports for students with autism, ADHD, and mental health issues. While they can’t provide medical diagnosis, they must provide some of the ABA services and other therapies.
However, schools are increasingly pushing back on these expectations, saying that it is outside their purview. They say their job is teaching reading and math to typical kids, not correcting autistic behaviors in teenagers. In fact, the line between health care and education has always been unclear, but with growing demands on school budgets, they are pushing back harder on paying for these therapy costs. Parents are pushing back, too, with mounting legal costs on both sides.
Born in 2002, my son is the part of the 1 in 68 cohort of the autism wave. At age 22, he and his friends are just now leaving public schools. Parents are learning that their kids, some of whom were on the high school honor roll, still don’t blend in very well, and no business will employ them. (The unemployment rate for young people with autism is about 85 percent.)
So, the only answer to teach all those new parents how to qualify for disability services. (If you need help, reach out. I’m helping parents do that right now.) The kids who are now turning 21 were part of the 1 in 68 cohort; guess what’s going to happen to the government disability support net when the numbers go to 1 in 22, and I’ve taught them all how to correctly fill out the paperwork?
Solutions
So, what should we be doing? Training more medical staff, for sure. More information on this soon. We also need to be building up programs in our schools and in the disability support systems. We should be rewarding and ranking schools based not just on the number of students in AP classes, but how they treat their disabled kids. We need to expose and embarrass bad players. And we need more awareness, more squeaky wheels, and more heroes.
The metaanalysis you link does not show the effectiveness of ABA therapy. The studies included are without a control group. If the post therapy IQ is higher than the pre-therapy IQ, that's only to be expected, as the children are older and have matured. The therapy is enormously expensive (several years of many hours per week!) and as you correctly say, many if not most kids below 4 are on the waiting list. It would be the easiest thing in the world to do a really large randomized controlled study with a waiting list control group. If correctly done experimental studies according the usual medical standards are rare among the published material on ABA, and "naturalistic" studies abound, maybe most of the methodologically better studies that were done went into the drawer as the results were not to the liking of the therapist lobby.
The one thing that may help parents of very young children with highly concerning autism symptoms is a referral to genetics. Most of the time, genetics won’t find anything, but if parents are “lucky” enough to draw a genetic diagnosis, it cuts the red tape. That wasn’t possible when your son was young, but these days a genetic screening is cheap and easy enough that insurance will usually pay for it.