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Wednesday, December 1, 2021

Melanie Sykes’s autism story trivialises the condition for parents like me

Melanie Sykes has been widely praised for her courage in “opening up” about her diagnosis, at the age of 51, as autistic. A successful TV presenter, magazine editor and mother of two (including a 17-year-old autistic son), Sykes attributes difficulties she experienced at school and in her working life to autism. In interviews she cites problems in reading numbers on an autocue when hosting a gameshow and in listening to her director through an earpiece while conducting an interview. She is celebrating her diagnosis: “I now have a deeper understanding of myself, my life, and the things I have endured.”

In the same week, our son James, now 29, who has autism with severe learning disabilities, came home for his weekly visit from the supported living project where he lives, with extensive bruising over both lower arms. This was the result of self-injury, in which he engages episodically and unpredictably. It can result in significant damage, both to himself and to anybody who attempts to restrain him. One of his carers also sustained bruises and scratches. Self-injury is a not uncommon feature of people whose autism is associated with epilepsy and severe communication difficulties that may result in challenging behaviour.

Sykes now joins the burgeoning ranks of adults newly diagnosed as autistic, who increasingly claim to speak on behalf of all autistic people. The dramatic expansion in the range of individuals who are now recognised as autistic reflects the loosening of diagnostic criteria to include features such as those described by Sykes. Like others recently declaring their autism, such as the model and writer Christine McGuinness and the best-selling author Holly Smale, Sykes enjoys a flourishing media career; my son, like many with autism and severe learning disabilities, is unable to speak and needs care and supervision 24/7.

The new wave of activists rejects the concept of autism as a disorder, embracing it as an identity which they celebrate as “neurodiversity” – a status to be embraced rather than requiring treatment. For Sykes, autism confers moral superiority; “an inability to tell untruths”. Neurodiversity campaigns have provided an experience of collectivity and a collective voice for some individuals with autism. They have challenged pejorative and stigmatising depictions by some autism charities and organisations promoting quack cures and therapies for children.

But their insistence on “diagnosis” as the gateway to membership of their new identity sits uneasily with their repudiation of the medical label of “autistic spectrum disorder”. To some it seems that neurodiversity activists want to have their cake (demanding diagnosis to legitimise claims for special consideration, support and services) and eat it (rejecting diagnosis as medicalising and discriminatory).

Neurodiversity activists often draw a parallel between themselves and the gay community as an “identity-based minority” with common experiences of exclusion and discrimination. But whereas the autism activists cling to medical diagnosis, the LGBT community asserted its identity in part through its repudiation of the medicalization of homosexuality. 

I am happy to congratulate Sykes and others who find the autistic label helpful in explaining some of their difficulties in life to themselves and others. But I am concerned at the danger of expanding the diagnostic criteria so far as to render the diagnosis of autism meaningless. This process also risks trivialising the symptoms of those like my son, for whom autism is a severely incapacitating disability, offering little scope for celebration.

I fear that the neurodiversity activists have little understanding of the concerns of those on the autistic spectrum who experience high levels of disability and appear to lack empathy for them and their families.

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