Diagnosis is a positive

The so-called ‘experts’ who say autism is being over-diagnosed are just plain wrong. Picture: Unsplash

I hesitated before sitting down to write this but, in the end, I decided it was important to have my say about something that’s upset me a great deal as an autistic person.

Earlier this year I made a conscious choice to direct my focus towards positive things. With the world so full of negativity and unpleasantness, I hoped that sharing some of the everyday stuff that brings me happiness, would – as well as boosting my own mood – be enjoyable for others, whether neurodivergent or neurotypical, and encourage them to find more joy in their own lives. The response to my fortnightly Substack blog, The Autistic Joy Project, has proved me right.

So, it’s with a heavy heart that I’m briefly turning my attention back to the negative, in the form of the invalidation of neurodivergent experience by Dame Uta Frith and Dr Suzanne O’Sullivan, two neurotypical ‘experts’ who’ve made it their business to declare that too many people are being diagnosed as autistic.

Not autistic, just anxious

According to interviews Dame Uta has given over the past couple of months, the idea of an autistic spectrum has become meaningless and many of the people currently being diagnosed are just anxious and overly sensitive. Inexplicably, she doesn’t think there has historically been diagnostic bias against women and girls, considers masking to be a harmless part of normal life – rather than something highly damaging – and believes accommodations such as ear defenders and lower lighting are not good for us.

To pick up on just one of these points, research has proved that masking prevents autistic people forming a robust sense of self, causes mental illness and contributes to higher levels of suicide than in the general population. But she chooses to ignore this.

Meanwhile, in her book The Age of Diagnosis and in interviews, including with Amol Rajan on his BBC Radio 4 programme Radical, Dr O’Sullivan maintains that ‘diseases’ such as autism are being seriously over-diagnosed – and that it’s doing those given these ‘labels’ more harm than good.

Autism is neither a disease, nor a disorder, nor simply a label. As psychologists and educators Tony Attwood and Michelle Garnett argue, it can be both a disability and a positive identity.

Unacceptable and offensive

Yet, like Dame Uta, Dr O’Sullivan repeatedly describes it as a brain ‘disorder’. She also talks about ‘severe’ and ‘mild’ autism. This is language the National Autistic Society, and most autistic people, consider unacceptable. Autism is a difference – a perfectly normal brain variation – and should not be categorised in this way. Judging us by how ‘odd’ or ‘difficult’ we appear to neurotypical people is deeply offensive.

Dame Uta says autistics are all so different, there’s nothing that unites us. I’m pretty certain most of us would disagree. Each of us has our own strengths and struggles – and, regardless of what they are, every one of us has a right to be treated with the respect Dame Uta and Dr O’Sullivan seem determined to deny us – but that doesn’t mean there isn’t a common pattern to our difficulties.

Despite this, both ‘experts’ think their opinions should hold more sway than the countless lifetimes of lived experience they negate.

Neither is willing to accept the reason for the leap in autism diagnosis is that greater public knowledge is leading more people to seek out an explanation for their life-long difficulties interacting with others and functioning in a world not designed for their neurotype.

Arguing that these people are not genuinely autistic and shouldn’t be diagnosed is like claiming the stars mapped since high-powered telescopes were developed don’t actually exist because no one saw them before.

A diagnosis isn’t a cure

Dr O’Sullivan supports her contention that diagnosis can be a bad thing by quoting a single case, that of a girl called Poppy, whose serious mental health problems were not cured by being told she was autistic. Well, no, they wouldn’t have been, but that doesn’t mean gaining clarity on at least one element of your difficulties isn’t a good thing.

For every negative example, there are countless positive ones from the late-diagnosed community. My own story, recounted in my memoir Mothertongue (published on 1 June by Thorn & Haw), is among them. As a reader of this website wrote to me recently, recognising her autism ‘has given me much more understanding of my struggles and compassion for myself’. In what universe could that ever be a bad thing?