By Nicole Beaver
“The Age of Autism” caught my eye as I scanned the spines of books at my local library. Ever a bookworm, I picked it up and added it to my stack of books to scan through for any potential further reads. However, upon further examination of the cover, I was appalled to see the full title of the book: “The Age of Autism: Mercury, Medicine and a Man-Made Epidemic.” In spite of my disgust, I decided to take a peek into the book. It got worse. “From the worst cases of syphilis to Sigmund Freud’s first cases of hysteria, from baffling disorders in 19th century Britain to the scourge of autism, The Age of Autism traces the long overlooked effects of mercury poisoning.” You read that right: “the scourge of autism” was written in the book’s overview. It was also called a “tragedy,” a “modern-day plague,” and other negative things. While this book was written some time ago in 2010, I am ashamed to say that its belief that autism is a negative thing persists even today.
As recently as 2018, Jenny McCarthy’s #EndAutismNow campaign was set up to help sell her friend J.B. Handley’s upcoming anti-vaccine book, “How to End the Autism Epidemic.” If you recall, my last article detailed the false claim that vaccines cause autism. When both the campaign and Handley’s book developed immense backlash, Handley, according to WordPress, “[called his autistic] critics ‘certifiably insane’ and ‘complete & utter idiots.’” His post also included a video of a child with severe autism displaying self-harm. Ironically, he actually pointed out the obvious saying: “it is a fragile thing to show a child with autism committing acts of self-injury.” The video was not uploaded with the child’s permission, and the post was later taken down.
Anti-vaxxers who believe that vaccines cause autism also believe they are saving children from a lifetime of suffering and misery. Most of us with Autism Spectrum Disorder (ASD), however, beg to differ. The Guardian’s opinion article “I’m autistic – don’t let anti-vaxxers bring back the culture of fear” explains how autism is painted by anti-vaxxers as a “curse,” remarking that “a few months ago, I wandered over to a stall marked ‘autism’ at my university’s careers fair; they informed me that they were looking for a cure to autism. There is no such cure, nor would I want one.”
His sentiment is shared with many others, including myself. People’s fear of this disability has been exacerbated by the belief that it is some kind of soul-stealing horror brought on by chemicals. It doesn’t help matters that many autistic children and adults were caught up in a discussion centred on how to avoid having an autistic child, or what “mistakes” were made that caused the autism, rather than embracing the possibilities of neurodiversity. Being stigmatized as “vaccine injured” and seen as something negative, devastating, and to be avoided at all costs can take its toll. As well, autistic people have wanted to have conversations about their rights, their struggles to find employment, and overall experiences in a neurotypical world. The neurodiversity movement is only now beginning to claw back control of its autonomy, out of the hands of parents and doctors who have spoken for autistic people. This recent surge of stigma has made it harder to speak out and self-advocate.
Additionally, Canada, the US, and the UK are facing a massive public health crisis because of a tremendous number of people who believe that autism is a fate worse than illness or death. A case of neurology that causes a degree of difficulty is being seen as a boogeyman, distracting from more prominent issues regarding health and vaccinations. However, the anti-vaccination movement is not the only factor in this case.
Autism Speaks is the world’s most prominent autism-related charity that promotes “autism awareness,” and advocates wear blue to show their support. The movement claims to help autistic people and their families, but Autism Speaks isn’t really a charity for autistic people; rather, since its inception in 2005, Autism Speaks has perpetuated the idea that people with autism are a burden and somehow “lost,” and they’ve refused to listen to any actual autistic people who disagree with this. It’s supported a number of dangerous and dubious treatments, like electroshock therapy and chelation, a lead poisoning treatment that has many risks and no proven benefit as an ASD cure, all in the name of making autistic people appear more neurotypical. Its official statements consistently refuse to acknowledge any humanity in autistic people or recognize that their families experience anything other than abject misery. In its 2013 call for action, founder Suzanne Wright, who has an autistic grandson, wrote that families with an autistic member “are not living. They are existing. Breathing — yes. Eating — yes. Sleeping — maybe. Working — most definitely — 24/7. This is autism. Life is lived moment-to-moment. In anticipation of the child’s next move. In despair. In fear of the future. This is autism.” It is interesting to note that this is one of the less-offensive things she said.
Knowing why people are so frightened, however, and why they think this “boogeyman” is worse than measles or rubella, should be better explained in order to dispel their fears. Verywell Health’s article “6 (Questionable) Reasons Why People Fear Autism” lists that these fears revolve around the following:
- Many symptoms of autism that are outside others’ experience
- The causes are not well understood
- People with the disorder act differently
- Relatives are scared for the individual afflicted
- Because guardians expect (or experience) negative judgments on their gene pool, their parenting, or their ability to discipline their child.
If autistic people continue to speak up for themselves and people actually listen to them, these fears can be dispelled. Very rarely is ASD the monster people imagine it to be. Using it as a scapegoat for not vaccinating or as one’s fears regarding chemicals such as mercury is extremely rude to those who have the disorder. For those who have ASD, know someone with it, or have a relative with it, Verywell closes their article addressing the fears one may have with a message: “Take away others’ power to make you feel bad about yourself or your child, and you take back your ability to love and enjoy them for the person he is.” While this was originally written to address the parents of autistic children, I feel as though it is applicable to all those who know or are related to someone with the disorder. If we take away the stigma of ASD and start addressing it as a variance that just needs some coaching and understanding, we take back our fear towards that person. It’s not the boogeyman, and it’s far from a scourge. It’s the Age of Autism, where people like myself with the disorder have better access to resources and assistance than ever before. As well, a disorder that makes us think a little differently isn’t the end of the world. I like to think of it as different minds contributing to make society a little more creative.