Health

I’m autistic – don’t let anti-vaxxers bring back the culture of fear | Karl Knights


Measles cases are surging across Europe, as vaccination rates have dropped. It’s a problem that medical authorities believe is, in part, a delayed effect of Andrew Wakefield’s utterly discredited scare campaign that attempted to link the MMR (measles, mumps and rubella) vaccine to an increase in autism diagnoses. That Wakefield has had such a long-lasting, harmful effect is an indictment of how autism was, and is still, perceived in some quarters: a devastating and incurable scourge, and the greatest trauma that can befall parents.

Since it began to be identified in the 1940s, autism has been viewed as a problem in need of a cure. 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. For decades the condition was shrouded in mystery, and parents have long sought the cause of autism. Wakefield provided a spurious explanation. But we now know that it is a naturally occurring form of neurodiversity: the brains of autistic people are different from the brains of neurotypicals.

In 1998 Wakefield published a paper in the Lancet that wrongly suggested that the combination measles, mumps and rubella vaccine was responsible for triggering an allegedly new condition called “autistic enterocolitis”. Subsequent investigations found that Wakefield had fabricated data and that he had undisclosed conflicts of interest. Wakefield’s co-authors disowned the article, the Lancet published a retraction, and Wakefield was stripped of his licence to practice medicine in the UK. Despite this, anti-vaccination has continued to dominate our cultural conversation around autism. Why, when all the science proved otherwise? A growing scepticism of authority explains some of it, but fear of autism is at the heart of the scare stories.

Wakefield set back the acceptance of autism as a naturally occurring form of human variation by decades. Anti-vaxxers hijacked the conversation. Autistic people wanted to have conversations about their rights, their struggles to find employment, and their struggles in a neurotypical world. And the neurodiversity movement is only now beginning to claw back control of its autonomy. Conversations are increasingly being led by autistic people. However, the damage that the anti-vaxxer movement caused to the neurodiversity movement is still felt today.

I’m autistic, and I was diagnosed 10 years ago, in 2008. At 12 years old, I had no way of knowing that anti-vaccination was still a live topic around autism. Luckily my parents didn’t engage with such a conversation. They were concerned about my needs, my access to education and employment. But many autistic children and adults were caught up in this bizarre and often harrowing episode – the discussion was too often 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.

The culture of fear that Wakefield aided and abetted has been taken up by far-right political movements, which capitalise on the fears that surround autism. In their narrative, autism is devastating and to be avoided at all costs. Anti-vaxxers point to rising rates as evidence of their outlandish theories. (In fact, as many studies and analyses have shown, the rates have risen because our diagnostic criteria have become more inclusive and more accurate.)

“For autistic people, the timing of Wakefield’s bogus study could not have been worse,” Steve Silberman, author of NeuroTribes: The Legacy of Autism and How to Think Smarter About People Who Think Differently, tells me. “Just at the historical moment when the true prevalence of autism was coming into view because of more public awareness, better screening methods, and so on, Wakefield came along to blame the rising numbers on vaccines. That had a devastating effect on autistic people – who now had to bear the stigma of allegedly being “vaccine-injured” on top of having autism – on parents, and on the direction of research. Instead of arguing about whether or not vaccines cause autism for a decade, society should have been investigating ways of improving the quality of life for autistic people and for their families.”

Autistic people deserve centre stage in these conversations. It’s always belonged to them, but they’ve been robbed of it by clinicians, concerned parents and anti-vaxxers. Society needs to amplify autistic voices – such as the artist Jessica Park; the professor of animal science Temple Grandin; the Australian writer and artist Donna Williams; and the writer John Elder Robison.

Their right to lead the conversation on autism isn’t up for debate. Yet with the far-right again pushing the anti-vaxx agenda, we must be steadfast in protecting our hard-fought progress. Anti-vaxxers cannot be allowed to regain the foothold that they had when I was diagnosed.

Karl Knights is a writer focusing on representation, disability and culture



READ SOURCE

Leave a Reply

This website uses cookies. By continuing to use this site, you accept our use of cookies.