For many outside of the autism spectrum disorder (or ASD) community, the diagnosis is often presented as a binary.
It’s a problem whose cause must be identified and eradicated, or it’s an inconvenience to one's ability to function in society that comes with extraordinary mental benefits.
In reality, as the name suggests, there is a spectrum and variety when it comes to neurodivergence, both in its cause and effects.
ASD is the term that’s now used as a clinical diagnosis for a broad range of neurodevelopmental disorders.
It has replaced terms like “autistic disorder,” “Asperger’s syndrome” and others.
It encompasses everyone from people who have autistic traits that do not impede their ability to live independently to those who need support with day-to-day activities.
For the purposes of this episode, I’m going to follow the guidance of the National Autistic Society and give preference to using the term “autistic person” rather than “person with autism.”
Throughout this episode you might hear me use ASD in the context of the diagnosis and “autistic people” in the context of the population.
ASD is the result of differences in the brain which can manifest in a variety of signs and symptoms, resulting in variations in the way people communicate, learn, and interact with others.
Signs can include everything from difficulties with social interactions or communications to restrictive and repetitive interests or activities, and sensory sensitivities to delays or regressions in language development.
Signs typically, but not always, begin to show up before the age of three and persist throughout a person’s life, though symptoms often change with age.
Some kids might even hit developmental milestones or gain new skills up to 18 to 24 months of age and then suddenly stop gaining skills or lose the ones they previously had.
If it feels like ASD prevalence is increasing, it’s because it is…sort of.
Twenty-five years ago about 1 in every 150 kids were diagnosed with ASD; in 2020 the rate was 1 in every 36 kids.
A big part of it is that we are getting better at training clinicians to recognize cases of ASD. There’s no medical test or one-size-fits-all criteria for an ASD diagnosis, so providers must be trained to recognize qualifying signs and symptoms.
Rates of ASD in children can vary greatly between geographic locations, or even school district to school district.
While it’s possible this could be due in part to environmental factors that impact biology, the current data supports that it’s more likely the result of differences in diagnostic trends.
2023 was the first year that white children did not have the highest percentage of ASD among racial groups, indicating that diagnosis in minority groups is improving.
But that year still found that boys were four times as likely to be diagnosed as girls, a stat which hasn’t changed much over time and that many researchers feel could be a factor of certain traits of ASD being viewed as more normal for girls than boys (things like being quiet, shy, or withdrawn).
Indeed, many women with ASD don’t get diagnosed until later in life, suggesting this difference might have more to do with missing cases in young girls.
But most researchers agree that improved diagnostic training doesn’t account for 100% of the increase. So, what else could be causing it?
Studies on identical vs fraternal twins have shown that, when it comes to an ASD diagnosis, 92% of the time both identical twins (who have the same genes) will have it, but only about 10% of fraternal twins (who only share 50% of their DNA) will both have ASD.
This indicates that DNA has a role to play in developing ASD. And as we know from our exposome episode, environment can impact the expression of genes.
Researchers have identified a number of genes that play a role in ASD. Most of them are the result of what are known as de novo variants, meaning that at some point in the development of the egg or sperm or embryo, a mutation occured in a gene that was not seen in previous generations of a family lineage.
We know that increased parental age is also a risk factor for ASD, so it’s possible that something about paternal or maternal age influences the likelihood of the de novo variants, but of course more research is needed.
But it could explain the increase in frequency, given the average age of mothers continues to increase.
Old fathers are also responsible for an increased chance of ASD, as well as a number of other birth risks.
But autism can also be a family characteristic inherited through generations.
Early research is also investigating if infections with viruses in childhood or exposure in pregnancy to things like air pollution, pesticides, chemicals, or certain medications could play a role as well.
Something we know is not contributing to the increase in cases of ASD is vaccination.
If you’re unaware, allow me to give you a historical crash course in the origins of the false claim that the measles, mumps, and rubella (MMR) vaccine causes autism.
The issue can be traced back to an English doctor named Andrew Wakefield, who, in 1998, published a paper in a well-regarded medical journal purporting to show a link between receiving the MMR vaccine and developing autism.
The paper had problems. It theorized that the MMR vaccine caused gut issues which led to autism, but all eight of the autistic children in the study (because there were only eight) started having gut issues after they were diagnosed with ASD.
Wakefield had also been paid by the law firm representing parents whose children had developmental disorders who were looking specifically to establish a link to the MMR vaccine—a fact he did not disclose.
The paper was found to have so many ethical and methodological issues that it was eventually retracted by its own co-authors, as well as the journal it was published in, and Wakefield lost his medical license for acting “dishonestly and irresponsibly,” and showing “callous disregard” for the suffering of children included in his research (he was found to have performed unapproved and unnecessarily invasive procedures on kids, such as spinal taps and intestinal biopsies).
Since then, there has been extensive research into the topic by the American Academy of Pediatrics, the National Academy of Medicine, and the CDC, among many other groups, in multiple countries, that have found no scientific evidence of a link between the MMR vaccine and ASD.
This is why it’s so frustrating to hear things like the Department of Health and Human Services announcing plans to once more investigate vaccines as a potential cause of autism: First, we have answered that question with literally hundreds of papers already.
But additionally, it just means we’re wasting money that could be spent on research that would benefit autistic people, or even just help neurotypical people understand the condition better to make it easier for autistic people to participate in daily life.
Right now, a lot of the general public’s exposure to autistic people is through depictions in popular media that aren’t necessarily that helpful.
Think of something like Love on the Spectrum, a documentary-style dating show that follows autistic adults in their quest for love.
Critiques by other autistic people have pointed out that, while the show is kind in its portrayal and likely well intentioned, it still infantilizes relationships between autistic adults.
There are more interviews with parents than with the adults who are attempting to date, and the background music feels like it could be used in a diaper commercial.
Others have pointed out that the show approaches autism as if it’s a hurdle to overcome, rather than a worthy part of someone’s personality that makes them a complete person.
And the strategies suggested to improve their dating odds are things that amount to hiding, or masking, their condition to conform to acceptable standards of behavior, something that’s known to cause harm in autistic people.
Another example of media depicting autistic people with positive intentions that can cause unintended harm comes in the form of the wildly popular podcast The Telepathy Tapes.
This eight-part series investigates autistic people who speak few to no words but seem to be able to telepathically know what the others in their life are trying to say.
But the people in the show use what’s known as “facilitated communication,” a technique that relies on a facilitator physically assisting the person with spelling out words on a board.
Facilitated communication has been largely discredited by many major scientific groups, such as the American Speech-Language-Hearing Association, for its high risk that it’s actually the facilitators authoring the messages rather than the person with the disability.
In reality, these acts of ESP are more likely evidence that these autistic people have extraordinary skills when it comes to picking up the non-verbal cues of those they are close to.
By framing them as having supernatural abilities in the context of facilitated communication, we risk overlooking both the communication methods that have more scientific rigor to support independence and the inherent communication skills these people do possess.
And it might seem harmless to showcase the supposed extraordinary abilities of certain autistic people, but there’s a historical precedent there that can become extremely harmful.
As previously mentioned, the term ASD is used to cover a broad category of neurodevelopmental disorders, including Asperger’s syndrome.
This inclusion is particularly important, because the origins of the diagnosis of Asperger’s Syndrome is rooted in Nazi eugenics: the idea that some lives are more valuable than others.
Previously, Asperger’s would be a diagnosis given to children who have autism but do not have a learning disability. It was named after Hans Asperger, an Austrian psychiatrist who worked with the Nazis to study cognitive developmental disorders.
Asperger believed there was a subset of young boys with autism who might have difficulties with social practices, but have high cognitive functions, and could be specially trained.
He believed they had the potential to be highly valuable members of society, unlike other kids with autism who could not be integrated and were seen to serve no purpose and ultimately killed by the state.
“Asperger’s” is no longer used as a diagnosis because it’s been grouped with “autistic disorder” and “pervasive developmental disorder-not otherwise specified“ under the new term ASD, but there is still a portion of the autistic community that’s sensitive to even casual use of the term Asperger’s because of its historical ties to the history of Nazi practices of euthanasia.
By identifying a subset of people under the umbrella diagnosis of ASD as having special abilities, it sort of unintentionally categorizes the rest of that community as lacking a beneficial side to their disability.
But that’s really the crux of the issue: people living under the ASD umbrella shouldn’t have to have superpowers to be seen as legitimate, or to deserve representation or support.
And the cause of ASD should be of interest to people not necessarily so that it can be eliminated, but so that we learn how to better help autistic people’s development, and design supportive services that are more effective, to give autistic people the same opportunities to live fulfilling and independent lives.
Research has shown that early intervention programs can significantly improve autistic children's development.
And that providing proper support services can increase autistic adults’ quality of life, reducing depression and anxiety.
