According to a paper recently published in the science journal Nature, Chinese researchers have successfully used gene editing on mice with a mutation associated with autism. These mice displaced repetitive actions and unusual social traits, but the gene editing changed their behaviour, suggesting that these kinds of behavioural abnormalities can be reversed.
If this could be successfully applied to humans, it would have massive implications for the understanding and treatment of autism — but would cause a huge conflict among autistic advocates, parents, and medical practitioners.
We can see this already with cochlear implants to treat deafness: some deaf people resent the implication that it is a deficiency to be cured, rather than an identity to be celebrated and respected. The comments below reaction videos of deaf kids having cochlear implants switched on are often full of angry remarks about how deaf people do not need to be “fixed”. Some deaf activists have even described cochlear implants as “child abuse” and argued that they are “genocidal” (in the sense that they would “wipe out” deafness).
If it were possible to “reverse” or mitigate the symptoms of autism, it’s fair to say this would cause a debate as incendiary as that over cochlear implants — if not even more rancorous.
The Scottish Green Party recently voted to ban any treatment aimed at modifying the behaviour of people with disabilities — comparing it to conversion therapy for gay and transgender people. And as one autism activist wrote today, “Any time you write an article about ‘treating’ autism, you are failing the autistic children and adults who need supports, understanding, acceptance, and services that they are not getting because all funding is going into those f***ing ‘treatments’. Do better.”
One important difference between this issue and treatments for deafness is that cochlear implants are not suitable for all deaf people, can take months or years to adapt to, and do not restore or replicate “normal” hearing. Hence there are lots of solid medical reasons why some deaf people should not and do not use them.
However, if, hypothetically, it were possible to “cure” autism, then it is hard to think of reasons why severely autistic adults and children would not benefit from this.
The 2021 Lancet Commission defined “profound autism” as typified by intellectual disability (such as an IQ below 50), very limited language skills (such as lacking the ability to communicate to a stranger using comprehensible sentences) and the need for round-the-clock supervision. It is estimated that this describes the reality of around 27% of people with autistic spectrum disorder.
For those with milder forms of the condition, such a “cure” might offer negligible benefits but devastate their broader political-cultural identity. It would also exacerbate the divide between the parents of people with severe autism and individuals who have milder forms, with the former often angry that the latter claim the same condition as their profoundly disabled kids. For their part, many activists with milder autism resent the implication that they are “not really autistic” and have pushed back against the Lancet’s “profound autism” definition.
Executive Director of the Autistic Self Advocacy Network Julia Bascom told the Washington Post of concerns “about the human and legal rights of the people who would be so labelled”, and that devoting funds to “profound autism […] would result in research aiming to ‘prevent’ or ‘cure’ autism.”
A middle way might be to talk about amelioration or mitigation rather than curing or reversing. The author Steve Silberman is a critic of formal distinctions between profound and milder forms of autism, but notes that children labelled “profoundly autistic” would be deemed to have “mild” autism if that had “better support and accommodations”.
This suggests that if gene editing were presented as a means to improve symptoms and behaviour without “curing” autism, it could offer help to the most severely affected in a way acceptable to autism activists. But if the diagnosis and treatment of autism becomes another way to distinguish between different political and cultural tribes, as we’ve already seen with Covid and vaccines, then autistic people themselves will be the ones to suffer most.