A new study was released last week which claims that "'coaching' parents [is] found to reduce autism diagnosis by two-thirds." Using communication therapy techniques, this is said to be "evidence that a pre-emptive intervention can reduce autism behaviours and the likelihood of a later diagnosis." In the wake of this news, the autistic community took to the internet to explain why studies like this are harmful to us and other neurodiverse people.
I am one of these people – an autistic woman who wasn’t diagnosed until the age of 23 and spent countless years cycling through mental health crises, unable to understand why my experiences were so different from those of my neurotypical peers. A lot about my life would have been different if somebody had told me much earlier on that every type of life is inherently valuable or if I had felt that sentiment reflected in our society and its treatment of marginalised groups.
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To begin with, the study’s aim is based on the prerequisite that being autistic is a bad thing; that displaying autistic traits is something every parent should work hard to suppress as early as possible. Existing as autistic in a world where these are the mainstream opinions about autistic lives can be excruciating and perhaps contributes to the fact that death by suicide is three times higher among autistic people than the rest of the population. An autistic person will always be an autistic person, no matter how hard people work to stifle that fact. By forcing a child into masking at an earlier stage, we risk that child becoming unable to access proper healthcare and diagnosis (something that is paramount if they need to access support).
The researchers claim that this study is not a cure for autism but if the therapy aims to teach neurodiverse children to fit themselves into neurotypical ways of being, then what else can it be called? This is not the first time that a cure for autism has been sought and it won’t be the last. All sorts of therapies, diets and treatments have been created over the years in order to suppress autistic behaviour or prevent the birth of disabled children. The autistic community is not a group of individuals whose voices are regularly heard by the general public, which is why the horror behind these cures is so often silenced.
This year, for instance, a US court overturned a ban that stopped a school from using electric shock devices on disabled students, something that autistic activists have been fighting against for years. Applied behavioural analysis (ABA) is the most popular 'therapy' for autistic people in the West but many autistic people advocate against it because its long-term use has been found to be ‘abusive’ and evidenced to increase PTSD symptoms in autistic people. Silencing autistic and disabled people’s experiences has allowed so many instances of individual and systemic abuse to go unchallenged, as evidenced by the horrors exposed in the documentary The Silent Minority, released 40 years ago.
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Even if the researchers were not searching for a cure, they’re still hoping to suffocate autistic behaviours, teaching these children to replace their natural behaviour with inauthentic mimicking of 'normal' people around them, an exhausting practice which leads to autistic burnout, increasing risk of mental health difficulties and other problems. At the heart of this effort to rid the world of neurodiversity and difference is eugenics, a desire to eradicate people who are deemed 'unfit'. In the context of disability, this thinking has led to people deciding who deserves to be born and who doesn’t: in Denmark, 95% of prospective parents who receive a positive result on a prenatal Down syndrome test choose to abort the baby.
I believe that this decision that certain lives aren’t worth living can be directly linked to the different models of disability. The medical model sees a person’s disability as the result of their 'impairment', meaning that any solution must involve a 'fixing' or 'curing' of the disability in order for that person to fit into society more effectively (or to eradicate their existence). The social model of disability is based on the belief that being disabled is simply a product of existing in a world that is built only to accommodate non-disabled people, isolating and excluding disabled people from society. This model takes the onus off the individual and places it on the world we’ve built, making it our job as a society to make life accessible for every single human being. Disability justice organiser Mia Mingus explains that we must move away from "an equality-based model of sameness and 'we are just like you' to a model of disability that embraces difference, confronts privilege and challenges what is considered 'normal' on every front. We don’t want to simply join the ranks of the privileged; we want to dismantle those ranks and the systems that maintain them."
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Rather than seeking ways to eliminate autistic behaviours, I believe resources and money should be spent on building robust support systems that prioritise disabled people’s autonomy, right to life, wellbeing and happiness. Stop asking autistic people to communicate in a neurotypical, 'acceptable' way and start teaching society about different modes of communication and how to be accommodating of these modes. Studies show that autistic people still have agency over their communication in assisted settings, that non-speaking autistic people have strong feelings about the use of therapies like ABA, and that families with autistic children report that they are loving, caring and happy children. Young autistic people are capable of living full lives filled with wonder and joy and it is society’s job to begin accommodating us, not the other way around.
It’s difficult to feel that something at the core of your being is something others are desperate to eradicate. "Imagine if the money spent on these studies was redirected towards research into supporting our sensory processing, supporting parents who are autistic, autistic people with other disabilities, autistic people who have been incarcerated, supporting autistic people needing mental healthcare, supporting us in work," says Ellen Jones, an autistic writer and award-winning campaigner. "That’s the kind of study I want to see. Autistic people exist, we have always existed. If many people had their way, we wouldn’t exist in the future. We contend with that reality daily."
Autism is not something to be afraid of. We have a choice: we can either decide to build a world that supports every kind of life or we can keep convincing ourselves that we have the right to decide which kinds of lives are valuable. I know which choice I would make.