Why I Wish I’d Been Diagnosed With Autism As A Child

By Rosemary Collins

When I was a child, my favorite fairy tale was The Snow Queen. I used to imagine that like Kay, the boy in the story, I had been frozen by a splinter in my heart. The splinter is what changed Kay, what prevented him from caring for his childhood friend, Gerda. I always felt like I couldn’t connect with other children, either.

I’ve never understood exactly what it is that allows people to grow so close they almost merge together — to get to a place where they are relaxed and open with one another, talking easily and making jokes without pre-planning it. I’ve always had tremendous difficulty forming and maintaining close friendships and relationships. In primary school, I spent lunchtime standing in a corner of the playground by myself, unconsciously flicking my hands to help me concentrate as I made up fantasy worlds in my head. I preferred this to any physical activities, such as crafts or sports, at which I often struggled — as if my body was blocking me instead of working with me.

At the age of 7, I was referred for an assessment for dyspraxia. According to medical records I only managed to access as an adult, I was given a dyspraxia diagnosis, but my parents were never told about it and the occupational therapy I received was haphazard at best. The Asperger’s assessment I received the following year was even worse. The doctor noted that I was socially awkward, with a “schoolmarmish” demeanor, but I had some social skills and a strong imagination. I told him some things I can now recognize as outright lies: that a girl I barely spoke to was my best friend; that I “loved” Brownies, when in fact I found each meeting exhausting and overwhelming. Even at that young age I had learned to say these things, because they made adults happier than the truth did.

When the first doctor left his job midway through my assessment, I was transferred to another pediatrician. My mother did not allow her to make her own assessment, saying she was worried it would upset me. In a letter written shortly before my ninth birthday, based on the first doctor’s assessment and observations of me at school, the second doctor wrote: “Even though she has a lot which would put her within the Asperger’s Syndrome I feel at this stage it would be more important to be pragmatic and review her following some intervention.”

Her decision not to diagnose me made its full impact known only after I started at Pate’s Grammar School at the age of 11.

***

Autism has a history of being viewed as a male condition. As Steve Silberman recounts in Neurotribes, Hans Asperger, who was the first to research the condition in pre-war Vienna, said he had never seen a girl with autism (Silberman notes the lack of girls observed by Asperger could have been due to the fact that many of his referrals came from the juvenile courts). Simon Baron-Cohen, one of the most prominent current autism researchers, has called it an “extreme male brain.” Scientists originally thought the ratio of autistic boys to girls was 10:1, but a recent study suggests the relative odds could be as low as 1.65. Personally, I wouldn’t be surprised if it was even 1:1.

The qualities most laypeople associate with autism — social awkwardness, difficulties understanding or being interested in emotions and relationships, obsessive focus on technical topics — are qualities we associate more with males. These traits also find more widespread acceptance when they appear in boys and men. Awkwardness or obsessiveness in men might be understood, smoothed over, even celebrated — think of the popularity of the BBC’s Sherlock, for example. But girls and women do not get the same benefit. We are expected to be “nice,” to keep others happy, to not stand out, to be sociable, to smile even if it makes us uncomfortable.

Recently, both Spectrum News and Scientific American published long features about the challenges facing autistic girls. In these articles, it is suggested that there are differences between autistic girls and autistic boys — for instance, one theory is that the brain of a girl with autism is more like that of a neurotypical boy than a boy with autism — and both articles note it is significantly harder for autistic girls to be identified or receive a childhood diagnosis. Many autistic girls diverge from the common stereotype of autism, something that holds true in my personal experience: I do desperately want meaningful emotional relationships in my life, even if I’m not sure how to get or maintain them, and my interests are in “creative” areas — literature, film, and television — not science. But many autistic girls also experience problems similar to autistic boys, while lacking the understanding, support, and diagnosis that could help them.

We need much more research in order to better understand the experiences and needs of autistic girls and women. We can guess that huge numbers of autistic girls are going undiagnosed, because medical professionals work from a list of symptoms largely based on observing and studying boys. The psychological strain of entering adulthood with no explanation for what is wrong with you, without even being able to admit something is wrong, without access to any support, and with a mask forever fixed on your face cannot be underestimated. The research we do have shows that autistic women experience higher rates of anxiety, depression, and eating disorders.

***

The gates of Pate’s Grammar School were painted dark green, and dark green is still the color I see when I have to fight down a particularly strong sense of fear. Entire weeks would pass during which I didn’t speak to anyone unless I answered a question in class. I don’t entirely blame my former classmates for excluding me; people have a right to draw boundaries when choosing with whom to socialize. But you can’t spend the formative years of your life in a confined space with hundreds of people who literally act like you don’t exist without it corroding your self-esteem.

My developing sexuality added another layer of complexity and pain — although I felt attracted to girls as well as boys, I suppressed the notion that I could be bisexual. My entire life was based on copying other people in an attempt to be “normal,” and there was nothing in my school, my family, my church, or the books I read that suggested being LGBTQ was acceptable or even possible.

I was one of the estimated one-fifth of British schoolgirls who experienced sexual harassment at school. As a conspicuous “oddball” with no female friends to stick up for me, boys constantly targeted me for both sexual comments and unwanted touching. Once, a whole group of them threatened to anally rape me — within earshot of a male teacher who did nothing to stop them. To survive constantly feeling lonely, unwanted, and scared for my safety — not to mention the crushing pressure to pass all my exams with straight As — I would tell myself, each morning, that I was a robot on a factory line. That it was just my body in the classroom, and my soul was separate from it. That I couldn’t feel anything. But trying to repress my emotions didn’t work, and I engaged in self-harm regularly from the age of 14 on, believing I deserved it for being unable to fit in the way others could.

Soon after I left school, I was sexually assaulted. Trying to pinpoint exactly what makes one a target for assault is a painful, pointless mental exercise, but I was traveling with a group of young women and the attacker specifically targeted and isolated me. I believe he did so because, after years of trying to be the person other people wanted me to be, I was conspicuously meek and passive. I arrived at university still numb from the trauma of the assault, and found other students, yet again, forming friendship groups while I was unable to break down the barriers. I spent most of the first year in my room, surfing the internet, barely able to go to class; that year I made a suicide plan, but did not go through with it.

While suicidal ideation certainly shouldn’t be seen as a blessing, for me hitting my lowest point came as a strange relief. I decided (like Dorothy Parker) that since I couldn’t find the “right” method of killing myself, I “might as well live.” I slowly pulled myself out of the hole I was in, forcing myself to engage more in my courses and extra-curricular activities. I rediscovered what I loved about studying English. I moved from a residential hall into a house with other girls, where I felt more at home.

I also finally came out to myself, and began attending meetings of the university LGBQT group. It was one of the most uncomfortable, cliquey environments I’d ever been in. Just as our understanding of autism needs to evolve to include women, the LGBTQIA community must become more knowledgeable about and open to neurodivergent people. But while I often felt like an outsider in my LGBTQ campus group, I also made one of the first real friendships of my life with a woman I met there. She was autistic, and said she thought she recognized some of the same traits in me.

With new determination, I decided to seek an evaluation and diagnosis. At the assessments that followed, I presented essentially the same personality I had as a child, but this time I was finally diagnosed as autistic. I had not changed. The goal posts had.

***

When I made a formal complaint to NHS Trust about my misdiagnosis as a child, they arranged a meeting with the second pediatrician. She apologized to me for the harm she had caused due to an honest desire to help me — and the apology is to her credit. But I’m still filled with regret that I did not receive a diagnosis sooner, before I lost my entire childhood to fighting problems no one would admit existed.

Finally getting an autism diagnosis was bittersweet for me. I had long thought that one day I would have a life-changing revelation and understand exactly what it was that separated me from others; I used to believe that if I just worked hard enough, I would learn what I had to say and do to make friends. On one hand, my autism diagnosis has finally provided an explanation for my differences, and helped me understand that my problems with social skills are real — and not a personal failing. I did nothing to cause them; they’re written in my DNA, an inherent part of my identity. But on the other hand, I’ve had to accept that I will never reach the long-imagined goal of being “normal.”

Since being diagnosed, I’ve tried to embrace the social model of disability — that a disability is a “problem” because it is defined as such by society, not because it is inherently negative. I’ve also embraced the idea of neurodivergence, which holds that autism and similar conditions are part of the spectrum of human nature and not problems or anomalies to be solved. I’ve built relationships with other people on terms I personally find manageable and satisfying, and no longer try to match what I think everyone else is doing. I have a few close friendships and limited, discrete social contact instead of forcing myself into nonstop interactions. I try to celebrate the good traits autism and my life experiences have given me, the things that make me unique: perseverance; an eye for detail; the ability to engage with subjects deeply and thoroughly; an excellent memory; a keen sense of fairness and tolerance; an awareness of injustice. While I’ve faced some dark moments, including a second suicide attempt, my diagnosis did mark the beginning of slow progress for me — a process of becoming more comfortable with myself.

***

Representations of autism in the media tend to center the parent’s viewpoint, focusing on the difficulties and worries of raising an autistic child. Although the tide is beginning to turn, thanks to the excellent writing and committed activism of many autistic adults, many parents still view diagnosis as a death-knell for their hopes and dreams for their child. Undiagnosed adults, especially women, still face multiple psychological and practical barriers to accessing the support and help they need.

To my fellow autistic women, to parents with daughters who show signs of autism: An autism diagnosis is not something to be feared. I understand the trepidation about the condition, especially as it is currently misunderstood and misrepresented in our culture, but I would still urge people to seek out a diagnosis if their practical and psychological resources allow.

For me, with my inherent logic and fact-focused brain, naming myself was what allowed me to begin accepting myself. If we are to save future generations of autistic girls and women from facing many of the same problems I did, we must teach them that they deserve to be seen and valued for who they are — not for who others might wish them to be.

***

Lead image: pixabay/Brahmsee


Originally published at theestablishment.co on August 30, 2016.