8 minute read
ALL AUTISTIC LIVES HAVE VALUE
All Autistic Lives
have value
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Ididn’t receive my autism diagnosis as a child. It’s
something I blog about often, usually whilst remarking on society’s trend to let autistic girls languish in silence for years. As an undiagnosed autistic child, I lost most of my childhood and adolescence to a silent and impenetrable hell.
On the surface, I presented as bright, outgoing, intelligent. I was called “an old soul,” “wise beyond my years,” and I took that praise to heart,” drifting deeper and deeper within myself until I dared not allow myself any feelings at all. I didn’t know how to act like other kids and I was so confused by the differences between myself and my peers that I lapped up any praise which suggested that my differences might be positive. Because, without an explanation for how my brain worked, I assumed that I was the problem. Internally, I labelled myself “broken" and "bad” because whenever I read about people who— like me— didn’t fit in, didn’t feel like other people, they were always criminals and serial killers. As a child, I connected those dots and spent years assuming I must have some hidden streak of deviance that I must suppress at all costs. After all, I assumed, why else would I feel so different?
As a 25-year-old with 5 graduate degrees, a thriving social life, and— crucially— an autism diagnosis, I have shed many tears for the undiagnosed little girl I used to be. On good days, I want to hug her and whisper that she isn’t the problem, that there’s a name for what’s going on in her head, and that none of this is her fault.
But on the hardest days, I’m angry. I mourn the unfettered happiness I could have had. I grieve the unfractured sense of self I could have cherished. I imagine how much happier I could have been if I was diagnosed with autism as a child. …that was, until I read an article with this title: “Children With Autism Were Offered ‘Do Not Resuscitate’ Orders During The Pandemic.”
Not only has this story been the subject of reports from multiple papers, an investigation by the Daily Telegraph revealed that “shocked parents are now worried their child could have agreed to the order because they may have not 'understood the question.’”
Further reading shows that this question was frequently raised to teenagers with autism and Down Syndrome— 18-year-olds who, just like me at 18, would be legally capable of making their own medical decisions, but functionally vulnerable. Would I have understood that question at 18? Would I have realised that I was legally signing my life away, agreeing that my life didn’t matter? Almost definitely not.
And therein lies the problem. I was— if you want to call it that— “lucky” enough to present as neurotypical through my entire childhood. The masking that destroyed my selfworth, my identity, and my inner life enabled me to be labelled “normal.” So, because I was not diagnosed as a child, I would not have been on a list of “people this option should be offered to.” And when I’ve discussed headlines like these with my GP, with my therapist, I’ve received a resounding, “But these headlines are never about YOU!”
Although these statements are made to reassure me, they have the opposite effect. Because these phrases reinforce the assumption of a ‘compliment’ I consistently receive— the pseudo-complimentary, “But you don’t LOOK autistic!” While intended as a positive thing, this phrase infuriates me because it tells me one crucial thing: that people mean it as a compliment because they’re saying I don’t look strange or different to them.
Behind the seemingly innocent phrase “you don’t look autistic” is the belief that it’s okay to discriminate against people who do. And, from there, it’s not a big leap to assume that it’s okay to suggest DNR orders to children who DO look autistic, because ‘their lives matter less.’
But it’s not okay to pick and choose the lives that matter. It's not okay to 'compliment' me on ‘not looking autistic’ and also feign outrage over this headline. And it's especially When I've discussed this headline with others, some people have attempted to justify their position to me by saying that because I am a successful student who has won awards and scholarships, my autistic life holds more value. That no one would ever think I should be offered a DNR order. Thus, the message is loud and clear: my life has value because I “contribute to society.” Because I’m capable of doing or producing something that other people value.
But that logic is exactly what terrifies me. All autistic lives have value— full stop. Our contributions to society— or lack thereof— does not give anyone the right to play God or to sneakily institute a return to the eugenics movement. And make no mistake: that's exactly what this DNR order is.
OCD NOT is ~
Obsessive Christmas Disorder
CD = Obsessive Christmas Disorder.
The headline hit me like a sucker punch in the checkout line at TK Maxx.
I’d just finished up a very pleasant day of Christmas shopping and I was in high spirits with “Santa’s Coming For Us” blasting through my AirPods. Until I saw those greeting cards and it ruined my entire night.
If you read that like an exaggeration, I don’t blame you. I did that myself for years before I was diagnosed with an alphabet soup of mental illnesses that my mum collectively calls “XYZ.” (I get it— in all fairness, it really does take ages to say PTSD, OCD, ADHD, anxiety, etc…)
So, I get it. I really do. I used to wonder, “Why would anybody get so worked up about a joke on a greeting card?!” But here’s why I don’t find it funny.
One night a few weeks ago, my friends and I left a bar. It was neither a late night nor a crazy one. We were a bit tipsy, but only enough to think we were much more funny and interesting than we are. We were certainly not drunk enough to black out, to do or say things we would not later remember.
My best friend walked me home that evening and I have clear memories of hugging him goodbye and letting myself into my apartment. I should also add that neither he nor I own a car. We don’t have our driving licenses and we both have zero desire to drive.
And yet, the very next day, when I woke up, the first thought in my head was, “I hit and killed somebody with a car. I killed them and I’ve blocked out the memory.” If you’re waiting for the punchline, there isn’t one. There is only the reality of my life with Obsessive Compulsive
Disorder. Because, as ridiculous and irrational as this thought was, I couldn’t shake the fear that it somehow must be true.
My first symptoms appeared when I was 6 years old. I had recently read a swear word in a book. I knew that was a word I was not supposed to say. On a phone call with my grandmother, a woman for whom my love was boundless, I suddenly- out of the blue- became gripped by the horrible fear that I would randomly say that word to her and disappoint her.
I didn’t want to say it. I was vaguely aware that I had the choice NOT to say it. But my fear was that it would happen outside of my most fervent wishes and best attempts at self-control. In stark terror, I thrust the phone at my mum without warning and ran.
These were the mildest symptoms I would ever experience. And, at 6, I didn’t know that- over the next 20 years- these thoughts would only worsen. They would intensify until I convinced myself that I had murdered someone and repressed the memory or said something nasty to my mum, along with many other acts that I considered even worse.
Each time, I would be mystified when my worst thoughts were disproved. And each time, I would check and check and check again. “You’re sure you’ve never seen me hurt anyone? You’re sure I didn’t say anything horrible last night?”
My fevered attempts at reassurance were baffling to my friends and family. They did their best to reassure me and brush it off as a weird quirk of mine.
But when I turned 21 and alcohol got involved, I discovered a new circle of hell. As an autistic- and very anxious- person, alcohol made me feel great. The pleasant buzz of being tipsy helped me to freely laugh with friends, to turn off the constant fear and anxiety that dogged my every waking moment. But it was kryptonite for my OCD.
I became paralysed by the knowledge that I had consumed a substance that can literally alter memory. Could I ever trust my own memories? Could I ever truly be sure I hadn’t somehow blacked out and done something terrible? These fears generated a new round of endless reassurance-seeking.
I compulsively apologised to friends, to bartenders, to my mum, and dropped not-so-subtle hints that I was looking for proof I hadn’t said or done something to offend them. It’s taken years of time and therapy to break this cycle— but even now, there are days when I relapse and fall into the old trap of, “Hope I wasn’t too weird last night…!”
My lifelong struggle with Obsessive Compulsive Disorder has ruined years of my life. Intrusive thoughts attach themselves to the values I treasure most— being a good person, being kind to others, doing my best to never hurt anyone— and distorts them until I convince myself that I am everything I hate and fear.
So, no, I don’t think it’s cute or funny to use phrases like “Obsessive Christmas Disorder.” When I see phrases like this, all I can see is a mockery of the disorder that made my life a living hell. And, most importantly, I see the misinformation that contributes to a widespread lack of awareness about what OCD really is.
