Opinion and Editorial

I was diagnosed with Autism at 28

Donald McCarthy (Mind over Matter)
Filed on December 1, 2019 | Last updated on December 1, 2019 at 08.27 pm

Many people go more than half of their lives before learning that they are autistic; the exact number remains a mystery, as research on adults with autism has been scarce.

I lived only half a childhood. Friendships were difficult, because I often did not know what to say. I had little patience for small talk and a dislike of new situations. Thrust into unfamiliar surroundings, my whole body would warm, my hands would shake, and I would feel a tightening in my chest and a deep, almost primal urge to scream.

Even as an adult, I felt like I viewed reality through a foggy window. I thought it was simply me - that my personality was just odd - and I would need to learn to cope with the fact that I did not fit in well with most people. Then, at age 28, I was diagnosed with autism spectrum disorder (ASD).

My diagnosis was a relief. Suddenly, I knew why I felt the way I did, and why I had a hard time living the way others did. But I can only imagine how much better my life would have been if I had been diagnosed as a child and had the chance to understand myself at a younger age. Might I have made emotional connections with my peers, instead of just with Bruce Springsteen songs and characters in Stephen King novels?

It turns out I'm not alone. Many people go more than half of their lives before learning that they are autistic; the exact number remains a mystery, as research on adults with autism has been scarce. Although public awareness of ASD and its symptoms has improved in recent decades, many children still slip through the cracks, especially girls and children of colour. We as a society have the power and resources to change that; all we need is the will.

Consider the science: There is little question among psychologists specialising in autism that an early diagnosis can change a person's life for the better. Therapy aimed at reworking the way a young person with ASD thinks and comprehends has shown success. Children who undergo therapy see results that allow them to curb undesirable behaviour, improve social interactions, and better their own quality of life.

But these therapies are of little help to children whose autism hasn't yet been detected.

Those children disproportionately include girls, who may have a lower rate of autism than boys, but also display autistic traits differently: Girls on the spectrum sometimes have an easier time of making friends but are more likely to have heavy anxiety, which can be difficult to spot. Children of colour and children from low-income families are also underdiagnosed with autism, partly due to inadequate social services.

The difficulty of detecting ASD compounds the problem. Because the disorder is a spectrum, there is screening but no easy checklist that can be used for diagnosis. This is especially true with young people, where factors unrelated to autism may cause spectrum-like behaviour. And most parents are not mental health specialists, which means, no matter how prepared they are, they may not be skilled enough to spot all the signs of ASD.

The solution, then, must go beyond better parenting. We must invest in an expansion of mental health services aimed at detecting autism, especially in our public schools and preschools.

As someone who had to learn how to relive life at 28, I believe the benefits of early diagnosis are worth the price. My diagnosis has changed my life. It has turned me into a more socially comfortable person and made me an excellent, empathetic, and successful teacher. I better understand myself, and I am kinder to myself. I want others to feel the same way. But that will only happen if society decides to make a concerted effort to make sure young people receive proper diagnoses.

Simply put, the next generation of people with ASD will either thank us for being there for them or wonder why we did nothing when we knew better. The choice is ours.


Donald McCarthy is a writer and teacher from New York

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