Wow! Could we be on the verge of a Eureka moment? Cambridge University has launched Spectrum 10k, the UK’s largest study of autism, involving 10,000 participants. Researchers aim to “investigate the genetic and environmental factors that contribute to autism and related physical and mental health conditions to better understand wellbeing in autistic people”.
What’s more, their work is being endorsed by charities supporting autistic people, while celebrities, including Paddy McGuinness, who has three autistic children, and Chris Packham, who is autistic, are giving it their backing.
As the father of a seven-year-old autistic boy, I have more than just a passing interest. Anything that promotes wellbeing in autistic people is hugely significant.
And on initial reading, it sounded like a positive step. Research is a good thing, right? But hang on. Did they use the word “genetic”? What are we talking about here? Eugenics?
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Well, no. It doesn’t go that far. But I wasn’t the only one to press the pause button. Indeed, the gathering of DNA samples and how these could be used have sent alarm bells ringing across the autistic community, with #StopSpectrum10k giving voice to their serious concerns.
There are fears research may even lead to tests, similar to those used for Down’s syndrome, to “screen out” unborn babies found to be on the autistic spectrum and eradicate the condition.
Sarah Gibbs tweeted: “There is literally no reason to find out what causes something unless you’d like to prevent it.” And Dr TA Meridian McDonald tweeted: “We need a clear distinction between eugenics related and health related genetics research.”
The National Autistic Society has declined to participate and Scottish Autism has raised concerns. However, the Spectrum 10k team insists it is “not searching for a cure” and is “ethically opposed to any form of eugenics”. But it adds a survey is not enough for research because “autism is overwhelmingly genetic”.
The desire to investigate the factors contributing to autism is understandable but in terms of ethics it is treading very muddy waters. I have an autistic child, and yes, dealing with his condition can be challenging for both him and his family. But it is his autism I can thank for his creative, wonderful and often hilarious way of looking at the world. It is his personality and I love him for it.
Read more: Health: Autism: Why autistic people need a powerful voice
I can only speak for myself and my own experiences. But one thing I am absolutely sure about it is this: rather than concerning ourselves with biology, it is much, much more important to address society’s attitudes to autism.
Sure, things may have moved on a fair bit in recent years, but prejudice and lack of understanding towards autistic people persist. Until autism is embraced as a natural part of our world then the wellbeing of people like my son will never be fully met. These are not broken people who need to be fixed, so let’s stop treating them like that.
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