Autism cannot be cured — stop trying
- Text by Jodie Hare
- Photography by Shutterstock
Last weekend, a story in the The Telegraph about a recent study claiming that ‘Autism can be reversed.’ caused outrage online. The study, involving twin girls from the United States, was published last month in the Journal of Personalized Medicine.
A single case study conducted over a period of two years, the study itself was immediately called-out by institutions like the National Autistic Society for its questionable nature. Without a wide sample size, a clear methodology, or even matching outcomes between the twins themselves, any supposed ‘conclusion’ is not at all robust.
The interventions included in the study (of which there are multiple - muddying ‘results’) have also raised concerns, particularly in the case of Applied Behavior Analysis (ABA). First developed in the 1960s by Ole Ivar Løvaas, who believed he could make autistic people ‘normal’ with the therapy, therapists involved in the ABA ‘treatment’ through the years have ‘slapped, shouted at or even given an electrical shock’ to children to dissuade them of ‘problem’ behaviours.
Years later, ABA continues to be an extremely controversial topic within the autism community, with some claiming that it is the only source of support on offer — particularly in the US where the families I spoke to explained it was often the only ‘treatment’ for autistic people provided by their insurance companies — whilst others share personal horror stories that detail abuse and mistreatment.
Beyond the mounting evidence that therapies like ABA can lead to increased PTSD symptoms and are unethical in their violation of ‘the principles of justice and nonmaleficence,’ autistic advocates have also suggested that the twins in the study are at risk of being taught to ‘mask’ from an early age. A strategy used by autistic people to appear non-autistic, masking involves suppressing your autistic traits, usually in an aid of protecting yourself from discrimination. As well as burnout, low self-esteem, and increased distress, research suggests that masking long-term can be linked to suicidal thoughts—a concerning issue for a population 7 times more likely to die by suicide than non-autistic people.
This desperate search for a cure for autism is not new, nor unique. In a bid to restore what they believe to be ‘normal functioning’ to autistic people, researchers have spent years looking for a way to ‘fix’ us.
One of the core tenets of the neurodiversity movement is the rejection of this search. ‘Curing’ a person of their autism until they become non-autistic is a goal with roots stood firmly in what Professor of Psychology and autistic author Nick Walker has labelled the ‘pathology paradigm,’ which she describes as having two assumptions: Firstly, there is one “right,” “normal,” or “healthy” way for human brains and human minds to be configured and to function (or one relatively narrow “normal” range into which the configuration and functioning of human brains and minds ought to fall). Secondly If your neurological configuration and functioning (and, as a result, your ways of thinking and behaving) diverge substantially from the dominant standard of “normal,” then there is Something Wrong With You.
Rejecting this paradigm outright, the neurodiversity movement argues that there is no single or ‘correct’ kind of neurocognitive functioning amongst humans. It argues that the use of language like ‘reverse’ and the framing of autistic people in terms of pathology is a value judgement that we have made as a society, and one that we have the power to undo.
The continued dominance of the pathology paradigm is what leads to the publishing of studies like the one in The Telegraph. The neurodiversity movement asks that instead we begin focusing our efforts on creating accommodations for autistic needs, increasing accessibility and inclusivity to ensure that systemic barriers do not exclude autistic people from social life. It asks that we continue building on societal acceptance of autistic people, supporting them to thrive as they are—with access to skill-building as needed—instead of asking them to eradicate parts of themselves.
The sensationalist nature of the article commits to a damaging narrative that has directly informed the horrifying dehumanisation of autistic people for years, as well as ignoring the voices of autistic people, who so often say that they aren’t searching for a cure. Setting us back by years, the article undermines the positive contribution of research that is asking things like: what does it mean for autistic people to flourish, what research is most wanted by different members of the autistic community, and how could having an autistic community around you improve your life.
A cure is not coming. It is time to support autistic people and their families.
Jodie Hare is an autistic writer from London. Her book Autism Is Not a Disease: The Politics of Neurodiversity will be published in September.
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