The Rising Rates of Autism
It's Better Diagnoses, Not Vaccines
Twenty years ago, back when my son’s speech delay became obvious, the school district sent us to a neurologist to see if he had autism. She watched him do a couple of wooden puzzles and asked him some questions. Her answer was, “Probably not.” The whole visit lasted about 15 minutes.
Teachers confided that they held back their suspicions about autism in other children because they thought it was pointless to worry the parents. Ultimately, there was nothing to be done, they said. Then they told me to get a manicure. I suppose that should have been a warning sign.
I took my son to the pediatrician's practice regularly. None of the doctors at that office were concerned that he couldn’t ask a “why” question, couldn’t make eye contact, and that he had taught himself to read at age three. They didn’t tell me to take him to a specialist or where to get the right therapy.
Between the ages of 2 and 5, I saw many, many professionals looking for answers about my son’s speech problems until I finally got a diagnosis. At that time, the national autism rate was 1 in 150.
What’s Happening Today?
Today, parents know about the warning signs of autism. They are aware that early and intensive therapy is essential to improvement. They also know that they need a diagnosis — an official note from a doctor — is necessary for insurance companies to pay for expensive therapy and for schools to open the doors to their preschool disabled program.
In a new report by the CDC of 274,857 eight-year-old children across 16 sites across the country, the autism rate for children is now 1 in 31. The biggest jumps were seen in the black and Latino communities. The latest study also found that those communities were also more likely to have autism with an intellectual disability.
This report comes during the same week as our new director of Health and Human Services, Robert F. Kennedy, Jr., described autism as “an epidemic” and that he would cure autism by September.
At my new job, I have a front-row seat on the new methods for diagnosing autism. Medical professionals use protocols with a three-inch manual, which scores children on various exercises like how they play with certain toys, how they respond to their names, and how they respond to the medical practitioner. These protocols are designed to pick up on all the subtle signs of autism and go beyond the traditional hallmarks of autism.
Because so many parents know about the warning signs, they call their doctors at the first sign of trouble. One mom told me that she had a feeling that her son was autistic when he was 11 months old.
With so many parents aware of the problems, they’re flocking to the doctors. There is a two or three-year waitlist to get an autism evaluation. That same mom told me when she called the child study team at a nearby university hospital, they laughed at her. They had stopped maintaining a waitlist because their calendar was booked up for several years.
Medicaid, too
And then there are the Medicaid parents. Do you want to be horrified?
So, most medical practices won’t evaluate children with autism, if their parents don’t have proper health insurance. It’s nearly impossible to get any payment from Medicaid. Kind-hearted doctors see those patients on their weekends. When parents hear about the nice doctors, they’ll drive for hours for an appointment. After their children get a diagnosis, the parents have to find an ABA company that accepts Medicaid.
Getting an autism diagnosis in low-income communities isn’t easy, but those amazing mothers are getting it done. Some of these parents don’t speak English. I have so much respect for those superhero parents.
So, let’s take those barriers out of the way. Take the waitlists away. Take away the Medicaid problems. Then, the autism rate goes down further. What is the real rate? I have no idea. Maybe 1 in 25?
The rise of autism rates in the United States corresponds to studies in other countries. The entire world is understanding autism better. It must also be related to the rising rate of other disabilities, like ADHD.
Are These Autism Numbers a Tragedy?
Some people look at those new numbers and shrug. For them, autism is just another element of natural human variability. What does normal mean anyway?
Last week, I talked to a smart young man in the honors program and on the pre-med track at SUNY Binghamton. If he didn’t self-identify as autistic, I wouldn’t have guessed. Yet, he had real problems before getting to college, including many issues with bullying.
Others have loved ones with severe autism. Pushing back against “woke autism,” they want people to understand that it isn’t easy managing the extreme cases of autism. They say that their children have high needs that require intensive support, which should be a government priority. They say that their children should be the face of autism, not Bill Gates or Elon Musk. If people think that all autistic people become billionaires, then they won’t fund residential communities and specialized schools.
In truth, autism contains multitudes. It contains the smart kid from Binghamton and the young men who never learn how to talk. Autism is a disability that requires different amounts of support.
The tragedy is that we know how to help children with autism, but only the rich and those with great insurance have access to the needed therapy.
The tragedy is that Congress is threatening to cut off funding for adults with autism.
The tragedy is that schools are failing to educate students with disabilities.
The tragedy is that we’re about to waste time and money investigating disproven claims that autism is caused by vaccines.
It’s the Diagnoses, Not Vaccines
Autism isn’t new. There has always been autism. In the past, people with autism were given other labels — retarded, weird, insane. They were hidden away from the public eye in basements and institutions, invisible to all of us.
The autism rate is rising because doctors are getting better at diagnosing autism. The definition of autism has changed over time to include low-needs individuals. And parents have become more aware of the benefits of an autism diagnosis.
Is that the whole story?
Studies show that autism is highly complex; it touches hundreds of genes. Many of us carry harmless genes when combined with a partner’s harmless genes become autism. Environmental factors may play a role in triggering those genes.
While a multitude of studies have shown that vaccines aren’t the trigger, our greater environment may be significant. We live in a stressful world full of microplastics and chemicals. Could a toxic environment trigger autism genes?
I support research into the genetics of autism and possible environmental triggers, but the main story is about diagnoses. We have to focus our energy on helping the families that care for family members with autism. They need access to therapy, education, housing, and more.
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Ian was three years old when I first sat around a conference table at Meadowbrook School and begged for more help for him at an IEP meeting. At that time, Ian only said a few words, preferring to communicate with people through hand written notes or sign language. He read fluently, hated loud noises, and screamed a lot. I didn’t know why he couldn’t tal…
Excellent article. Thanks.
Nice work, Laura. Helpful and reassuring.