"Autism," noted medical professional Donald Trump declared at Wednesday's Republican presidential debate, "is has become an epidemic. 25 years ago, 35 years ago, you look at the statistics, not even close. It's gotten totally out of control."
Trump proceeded to express his belief in a long-debunked conspiracy theory that holds that the introduction of the Measles, Mumps, and Rubella (MMR) vaccine is responsible for the rise of autism diagnoses in recent decades. Critics like Vox's health reporter Julia Belluz have blasted him for engaging in that kind of irresponsible fear-mongering, and rightly so. But it's not the only thing wrong with Trump's statement.
Leaving aside the fact that the MMR vaccine does not, in fact, cause autism, think for a second about what it means to argue that, if it did, children shouldn't receive the vaccine. Measles, mumps, and rubella are serious illnesses. Measles in particular is occasionally fatal. The US has gotten fatalities down to 0.3 percent of diagnosed cases due to effective treatment, but in developing countries like Afghanistan 8 to 13 percent of patients with measles die. And even patients who survive experience symptoms like fever, cough, and a large painful rash; the infection can last weeks.
What parents who believe in the MMR vaccine-autism link, and don't vaccinate as a consequence, are effectively saying is, "We're willing to increase our child's risk of death and serious illness in order to reduce their risk of getting autism."
That's appalling. Trump and other vaccine denialists may not realize this, but some of us on the autism spectrum don't view ourselves as deeply broken. We don't think we'd be better off dead. We think that we have a natural, and in many ways valuable, difference in how our brains work, and don't want to give that up. Obviously, people who have difficulty living independently or communicating should receive help. But implying that their lives, or any of our lives, are so awful that parents should be willing to put their kids in danger in order to prevent them from becoming like us is deeply, deeply offensive.
I get why parents reach for this kind of explanation, I really do. It's genuinely difficult to see your child struggle to communicate, or engage in self-harm, or isolate themselves socially. It's easy to seize upon a simple explanation of what's happening, to find a villain to vanquish when faced with those challenges. But you know what's also challenging? Being a "low-fuctioning," non-communicative person on the autism spectrum. If you're in that position, discussions about how you're "broken" and how best to prevent future children from ending up like you aren't helpful. They're distractions from your actual needs: effective, affordable caregiving; access to augmentative communications technology; jobs that are flexible and understanding of the autism spectrum. The more time we waste on vaccine myths and fingerpointing about what's to "blame," the less time we spend actually helping people with autism.
The Autistic Self-Advocacy Network (ASAN), the premier autism rights group in the US, put it well in a statement released last night:
While no link exists between autism and vaccines, of greater concern is the willingness of those who promote this theory to suggest that exposing children to deadly diseases would be a better outcome than an autistic child. Vaccinations do not cause autism – but the use of autism as a means of scaring parents from safeguarding their children from life-threatening illness demonstrates the depths of prejudice and fear that still surrounds our disability. Autism is not caused by vaccines – and Autistic Americans deserve better than a political rhetoric that suggests that we would be better off dead than disabled.
Autism is not an epidemic
Also, just as a factual matter, autism isn't an epidemic. There's precious little evidence that more people are on the autism spectrum than ever before. A paper published in the British Medical Journal earlier this year looking at Swedish children born from 1993 to 2002 found that even though autism diagnoses increased, the share of children exhibiting autistic symptoms didn't. That makes sense. Public awareness of autism has increased substantially in recent decades, meaning more parents are likely taking children into psychiatrists and receiving diagnoses. And the BMJ paper isn't alone; research on prevalence in Denmark, California (2), and England has reached similar conclusions.
But perhaps more importantly, the diagnostic criteria used for autism changed between the 1980s and 1990s. As autism researchers Morton Ann Gernsbacher, Michelle Dawson, and H. Hill Goldsmith explained in their 2005 paper, "Three Reasons Not to Believe in an Autism Epidemic," the 1980 edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-III) required patients to satisfy six mandatory criteria, whereas the 1994 edition (DSM-IV) only required them to exhibit 8 out of 16 optional criteria. The 1980 criteria were more limiting as well; one required patients to exhibit "a pervasive lack of responsiveness to other people," whereas a 1994 criterion only asked for "a lack of spontaneous seeking to share … achievements with other people."
DSM-IV also added a diagnosis of Asperger's Syndrome. The 1980 manual only listed "infantile autism" and "childhood onset pervasive development disorder," effectively limiting diagnoses to children or adult who are severely disabled, perhaps needing constant supervision or care. But by including Asperger's, DSM-IV opened the door for highly verbal children and adults of normal IQ to receive autism spectrum diagnoses as well. What's more, there's evidence that Asperger's and other autism diagnoses have substituted for other intellectual disability diagnoses, which would also register as an "increase in autism" without actually representing an increase in the number of people with these symptoms.
What's more, Gernsbacher, Dawson, and Goldsmith note that the US federal government didn't even begin counting autism cases in schools until after the passage of the Individuals With Disabilities Education Act (IDEA) in 1991. That makes it easy to tout huge increases in autism diagnoses — the Autism Society of America in 2003, for example, cited a 1,354 percent hike in students with autism from 1991-92 to 2000-01 — but reporting increased for just about everything, as it took a while for schools to start using IDEA's new reporting categories. Traumatic brain injuries in schools grew 5,059 percent from 1991-92 to 2000-01, according to IDEA data. But there wasn't an epidemic of people getting hit in the head. That's just how data reporting works.
Beyond the actual numbers, though, one dubs a trend an "epidemic" when attempting to pathologize it, to paint it as a dangerous scourge in need of eradication. But many on the autism spectrum don't want to be eradicated. We like ourselves the way we are. And we resent the implication that changing who we are is more important than offering the accommodations necessary for everyone on the autism spectrum — regardless of "functioning" level — to thrive.