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Julie M. Green is the author of Motherness: A Memoir of Generational Autism, Parenthood, and Radical Acceptance. She writes about her experiences as a late-diagnosed autistic woman raising an autistic child at The Autistic Mom.
Five years ago, I was diagnosed with autism spectrum disorder. I was 44, and for the first time in my life I was “trendy.” Everyone is autistic these days – at least it seems that way if you spend enough time scrolling. But social media is not real life, and the internet is rife with misconceptions about autism.
No one “pretends” to be autistic or chases a diagnosis for fun. Why would anyone want to? Autism is not the mainstay of the quirky or the genius you see on TV. It is a neurodevelopmental disorder that still carries considerable stigma. Autistic people are routinely judged and discriminated against. We are more likely to be victims of bullying and abuse. More likely to be hated and ridiculed. If it’s attention you’re after, there are easier – and arguably better – ways to get it than claiming to be autistic.
Autism is not merely a trend or passing fad. There is no explosion. Nor is there an epidemic. An abundance of planets have not suddenly appeared in our solar system; they were always there. We previously didn’t have the right tools to see them. So it is with autistics. Standardized screening and widening diagnostic criteria are those tools.
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Society has always been neurodiverse. The people we once recognized as autistic represented only a small segment of the autistic population: young, white, male. Often minimally or non-speaking. Often these people were locked away in institutions, while the rest of us have always been there, hidden in plain sight. Struggling in private. Instead of autism, we were called other names. Freaks, eccentrics, jerks. Instead of autism, we were diagnosed with other disorders that did not quite fit: schizophrenic, obsessive compulsive, borderline personality, generalized anxiety, bipolar … Without the right supports, we were left to languish. We coped by self-harming, abusing substances and taking our own lives.
Why on earth would you want a label? It’s not a case of wanting a label. It’s a case of wanting to understand. It’s a case of naming what has never accurately been named. There is no elite membership or secret handshake when you receive an autism diagnosis as an adult. There is no welcoming committee. What there is, though, is relief. Floods of relief. And an answer, at last, to the questions that have punctuated a lifetime of being misunderstood and misdiagnosed – especially if you are a woman.
Autism doesn’t have a certain look, and maybe that presents a problem for some, who want to distinguish themselves from disabled people. Often you can’t even tell by glancing at us that we are autistic. From the outside I look like any woman in her late forties. What you don’t see are the areas of my daily life marked with struggle. You don’t witness the degree of support I require from my partner and my family. That’s why autism is considered an invisible disability. But an invisible disability is still a disability. For most of my life I have been perpetually unwell, crippled by anxiety, chronic illness and sensory overwhelm. Why did I need hours (sometimes days) to recover after every outing? Why did even the slightest change in plans send me spiralling, crying and raging inexplicably? Why did I rehearse every conversation and still manage to offend people? Why did I routinely misunderstand others – and for that matter why couldn’t people just say what they mean? Why were the things that came effortlessly to others so much harder for me?
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I had no answers for these and myriad other questions. I didn’t know what was wrong – only that some essential part of me was deemed wrong by others. Stop being so rigid. Don’t be so dramatic. Don’t be a crybaby. It’s not too bright/loud/smelly in here. It’s in your head. Resigned, I learned to stuff down my feelings. But ignoring my feelings didn’t make them go away; it didn’t make me fit in any better. It simply proved that my discomfort didn’t matter. When you continually discount your needs, you learn to second-guess your instincts and open yourself up to exploitation and abuse. It’s no wonder many autistic girls learn to “mask” and later experience depression and burnout. It’s no wonder we have higher rates of chronic physical and mental-health conditions and are 13 times more likely than non-autistic women to die by suicide.
So if we tend to get a bit obsessed after learning we are autistic, can anyone blame us? Don’t let autism define you, people say. But it does define me. After all, autism is not an accessory I can easily remove, like glasses or a piece of jewellery; it is as integral to my DNA as having brown eyes or freckles. It colours every experience I have. Every interaction and perception I have is filtered through its lens. It’s not a badge of honour; nor is it a superpower. It’s not a gift, but it’s not a tragedy either.
The floodgates on diagnosis aren’t suddenly open. The barriers are simply down, letting in those who were kept out, marginalized, ignored, for decades. Some would rather the barriers stayed up. Seeking to know who you are after decades of confusion and exclusion is not attention seeking or narcissistic. It is not a pretence or a charade but a human right. It is never too late to understand yourself. Everyone deserves a better way to live.
Learning I am autistic, and always have been autistic, reframed how I feel about myself. It has allowed me to treat myself with understanding and compassion, instead of shame and self-loathing. It has allowed me to listen to my needs and establish boundaries for the first time in my life. Part of the unmasking process might involve not forcing eye contact and small talk. It might involve prioritizing rest without feeling guilty and without pushing until I get sick or burnout. Such accommodations are trifling. They cost nothing to others, yet they add so much value to my life.