Regular readers will know that I am in grad school for clinical mental health counseling, and so I am studying autism among many others topics.
I just discovered (it's Tuesday the 15th as I type this) that I did not publish this post on Saturday the 12th.
I have been writing about this very thing in my classes.
The numbers on autism’s prevalence in America seem remarkable: In the 1980s roughly 1 in 2,500 children was diagnosed with the condition, according to some estimates; today it’s 1 in 36. The Trump administration has said it will investigate what’s fueling this increase.
But one scientist, Holden Thorp, who was diagnosed with autism at the age of 53, claims that we already have a pretty good explanation — and it’s not vaccines, as our health secretary, Robert F. Kennedy Jr., seems to believe. Instead, Thorp ascribes the increase largely to greater awareness and changes in how we diagnose autism.
He points to his experience. Growing up, he often missed social cues and gave long monologues about his interests. During his youth in the 1960s, the autism label was usually used for children who had huge difficulties in daily functioning, and he wasn’t flagged for evaluation or diagnosis. That might be different today.
Thorp thinks more diagnosis is a good thing. A diagnosis can facilitate access to important resources and accommodations; it helps people understand themselves and communicate their needs to others. Also, he points out a debate in the community as to whether autism is even a disorder we should be trying to prevent.
Does that mean that we shouldn’t investigate whether something in the environment could contribute to autism? There’s room for more research, Thorp writes, but it’s a waste of time to focus that energy on the claim that vaccines cause autism, which has been debunked by numerous studies.
https://www.nytimes.com/2025/03/20/opinion/autism-diagnosis-rfk-vaccines.html
I Was Diagnosed With Autism at 53. I Know Why Rates Are Rising.
Mr. Thorp is the editor in chief of Science and a professor of chemistry and medicine at George Washington University.
President Trump and Robert F. Kennedy Jr. have vowed to
tackle what they describe as a scourge threatening American children. The rise
in autism has been precipitous: One in 36 children is affected today, up from
four in 10,000 in the 1980s, the president warned in a recent executive order. Under Mr. Kennedy’s direction,
the Centers for Disease Control and Prevention plans
to investigate whether vaccines are the cause — despite overwhelming
evidence that they are not.
But what if there’s no mystery to be solved? What if autism
is not becoming more common at all? What if the rise in diagnoses is a good
thing?
As a scientist with autism, I believe the rise in diagnoses
is the result of greater awareness, better identification (especially among
women and girls) and a broader definition that now includes a range of
neurodevelopmental conditions under the umbrella of autism spectrum disorder.
As a child, I often stared into space, missed social cues
and delivered long monologues about my specific interests. But it was not until
I was 53 that I suspected I had autism spectrum disorder.
The idea arose during a professional review for which my
employer had brought in a psychologist. After interviewing my co-workers and
me, the psychologist suggested that I might have autism, which subsequent
evaluations confirmed.
It’s hard to grasp how a seventyfold increase in autism
cases could mostly reflect changes in diagnosis or heightened awareness, but my
experience helps make sense of it. When I was growing up in the late 1960s,
autism was mostly diagnosed among children who had huge difficulties in daily
functioning and needed extensive support. I wasn’t flagged for evaluation or
diagnosis, but that might be different today.
Studies show that the increase in autism spectrum
diagnoses among people like me who do not have intellectual disability, defined
as an I.Q. under 70, has steeply increased since 2000. If I had been diagnosed
as a child, it probably would have been with Asperger’s syndrome, a label that
was often given to children who struggled socially but didn’t have the language
delays present in many cases of autism. But in 2013, the American Psychiatric
Association folded Asperger’s syndrome into the broader category of autism spectrum
disorder.
We also have strong evidence that children who would have
been diagnosed with an intellectual or learning disability or emotional
disturbance a couple of decades ago are now being diagnosed with autism.
Clinicians are also identifying children at younger ages, as early as 18
months. And they are getting better at recognizing the ways that autism
can look different in girls, who have always had lower rates of the diagnosis.
If you still think greater awareness and changing diagnostic
standards can’t account for the rise in cases, consider this: When researchers
screened 50,000 children for autism in South Korea from 2005 to 2009, a time
when autism diagnoses were rare in the country, they found 2.6 percent of the population met the
criteria for a diagnosis. That’s almost exactly the rate of autism diagnosis we
find in the United States today — another piece of evidence that while the
official statistics can vary widely, the underlying incidence may be relatively
stable across different decades and regions.
As autism has become less of a stigma, it has also become
easier for parents to accept. Since I publicly
disclosed my diagnosis a year ago, I’ve heard from many people who
wonder if they, too, should get evaluated. These questions often come from
parents whose child was diagnosed and who recognize similar traits in
themselves.
There’s disagreement over whether people like me who are
professionally successful and don’t have learning difficulties warrant a
diagnosis. But even people with milder symptoms of autism can struggle without
the acceptance and support for organizational challenges, sensory issues and
social communication that a diagnosis can help provide. A diagnosis can also
give children access to special education, specialized forms of therapy,
accommodations in school and coverage of these treatments by health insurance.
The notion that autism needs to be treated or cured is
deeply contested. The Autistic Self-Advocacy Network, a nonprofit group run by
people on the autism spectrum, released a statement in response to Mr. Trump’s executive order,
arguing that autism is not a disease but rather a natural part of human
diversity, “something we are born with, and that shouldn’t be changed.” Far
from being solely a deficit, I believe, my neurodiversity has made me a better
scientist because my autistic thinking leads me to search for patterns, a crucial skill in science.
Other people, including some but by no means all family
members of individuals with very high support needs (sometimes called profound
autism), may be more likely to consider autism as a medical condition worthy of
pharmaceutical intervention and research into treatment and prevention.
Although I subscribe to the neurodiversity view for me, I oversee a scientific
journal that publishes research from both perspectives, and I believe
proponents of both ways of viewing it have a lot
to learn from each other.
One thing that unites both of these camps, however, is
a disdain for the persistence of the debunked claim that
autism is a result of vaccination.
Could there be other factors behind the surge in autism
diagnoses beyond increased awareness? Yes. Conservative estimates from studies
of twins and siblings indicate that genetic factors may account for about 80
percent of autism risk. That leaves room for environmental factors.
For instance, there are studies suggesting a link between autism and exposure
of expecting mothers to nitric oxide found in air pollution.
But any environmental contributors to autism will need to be
subjected to rigorous study of all of the evidence. Too often, when vaccine
skeptics blame vaccines for autism, they point to studies that
have weak methodology, as Mr. Kennedy did during his confirmation hearing for
health secretary. Proponents of these studies ignore the existence of numerous large and carefully designed studies that
show the opposite.
Some argue, what’s the harm of doing more research on
whether vaccines cause autism? For people with severe challenges, whose
families urgently want treatments to improve their child’s situation, money
spent on a dead-end road takes resources away from more productive paths. It
can also increase vaccine hesitancy and contribute to the resurgence of deadly
diseases, like the measles
outbreak spreading in Texas and neighboring states.
Further, public acceptance of the wrong cause can be
detrimental for patients and families. The idea that autism was caused by cold, distant mothers, a leading theory in the 1950s
through 1970s, produced considerable trauma before it was debunked.
Knowing I’m on the spectrum has improved my life for the
better. I’m able to give my co-workers and loved ones context for how to
understand and interact with me. For example, I struggle to modulate my facial
expressions and vocal tone. Expensive media coaching failed to help; it just
made me preoccupied with my mannerisms instead of my message. By disclosing my
diagnosis, I can free my mind to focus on the meaning of my words.
But more than that, I’ve been inspired by the strength of
the parents and children who have struggled more than I have, often because
they didn’t get the attention and support they deserved. Getting more people
diagnosed has helped with this problem.
The last thing we need is to relitigate a vaccine debate
that just confuses people and does nothing to accommodate a different way of
thinking.
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- New note - On 1807.06, I ceased daily transmission of my Hey Mom feature after three years of daily conversations. I post Hey Mom blog entries on special occasions. I post the days since ("Days Ago") count on my blog each day, and now I have a second count for Days since my Dad died on August 28, 2024. I am now in the same time zone as Google! So, when I post at 10:10 a.m. PDT to coincide with the time of Mom's death, I am now actually posting late, so it's really 1:10 p.m. EDT. But I will continue to use the time stamp of 10:10 a.m. to remember the time of her death and sometimes 13:40 EDT for the time of Dad's death. The blog entry numbering in the title has changed to reflect total Sense of Doubt posts since I began the blog on 0705.04, which include Hey Mom posts, Daily Bowie posts, and Sense of Doubt posts. Hey Mom posts will still be numbered sequentially. New Hey Mom posts will use the same format as all the other Hey Mom posts; all other posts will feature this format seen here.
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