4 April 2017

Why It Took Thirty-Five Years To Diagnose My Autism

When I was four years old a speech therapist told my mother that my inability to speak would right itself. Her GP told her not to worry about my severe sleep problems and that I was simply a fussy eater for only eating jam sandwiches and yogurt.

The self-harm and eating disorder I developed as a teen was put down to depression and when I tried to end my life aged eighteen, I was called selfish by the nurse who pumped my stomach.

For ten years psychiatrists struggled to pin down a label because I didn’t fit into any box. I was eventually misdiagnosed with bipolar disorder, mixed anxiety disorder and borderline personality disorder. My meltdowns were misdiagnosed as “non epileptic seizures” in my early twenties and my intermittent selective mutism was put down to catatonic depression. When medication failed to improve my mental health I was subjected to multiple sessions of ECT and when that failed, lithium was introduced. When I became blind due to lithium toxicity I discharged myself from the mental health service and weaned off all my medication. I was warned by my psychiatrist that I was putting myself at significant risk without medication.

Seven years later my mood is still stable and at the age of thirty-five, I was told I was Autistic.

I Still Had A Nine Year Wait To Get A Diagnosis

It was a neuropsychologist who first mentioned autism in 2009. We talked about the difficulties I had making friends and how I preferred to spend days on my own avoiding contact with anyone. He noted my above average IQ and exceptionally strong visual processing skills and photographic memory. However, when I asked my GP if I could be assessed for autism she told me autism only affects little boys, and they grow out of it anyway. I didn’t utter the word Autism again for seven years. I was married six months before I told my wife what had happened and she suggested I look into it further and self-refer for a diagnostic assessment.

In September 2016 I met the Adult Autism Diagnostic Team. My mother told them how I refused to eat anything that wasn’t pureed as a child and that I never sought cuddles or affection as a baby. She shared how I taught myself to read as a toddler and fixated on a subject which would dominate my conversation. Looking back she could see I was clearly autistic and was angry that doctors assumed she was just an anxious mother. My wife shared how I find it hard to talk on the phone and how I will walk away from a conversation with someone when I have had enough. She explained that I simply don’t understand social rules. She described my brutal meltdowns, how I can be rocking and wailing while hitting myself and biting my arms but she can’t hug me to calm me down because I can’t stand being touched. I presented the team with piles of written notes and school reports which praised my dedication to perfecting my work yet struggled to recognise my own achievements. It didn’t take them long to agree that I fulfilled the criteria for an Autism Spectrum Disorder diagnosis and that I had significant sensory issues, social communication issues, repetitive behaviours and obsessive interests.

I “Mask” So My Autism Is Not Obvious To Others

The problem is, to everyone else I am a bubbly, confident focussed young woman. I talk to shop assistants, I chat with friends. I don’t look autistic because, like many autistic women, I mask my autism. Hiding it after a lifetime of being taught that stimming is embarrassing and not making eye contact is rude, is why autistic women are trapped in a unique world of struggling immensely yet looking perfectly fine.

Autism is more than the stereotype of the little boy lining up his toy cars and flapping his hands. It is not just Dustin Hoffman’s Rainman, Sheldon Cooper or Saga from The Bridge.

Autism is me as a little girl crying and squeezing my hands over my ears because the hoover is deafening and overwhelming. At six years old I spent hours with my father’s atlas rather than playing with dolls and wanted history magazines instead of comics. Alone in my room I paced and flapped my hands, smelled the wallpaper and would observe the world from my window for hours. That same little girl was pack leader at Brownies, top of her class and a favourite among peers at her mainstream school.

As a 36 year old woman I rock in the corner of my room hitting my head and sobbing because something is out of place and I can’t stop the ensuing meltdown. Autism is the mask I wear as a freelance writer and vlogger confidently sharing my life with others yet without that mask I am like a child.  Flapping my hands as I repeat lines from animated movies and collecting children’s sticker books is part of me that Youtube and even my family do not see. I chat with the postman about the weather and an hour later I’m bouncing vocal stims off the wall in the hallway so I can feel the sound on my face.

Autism is I, and all the other women who fall through the cracks in the system because medical professionals do not understand that little girls with autism learn to hide it.

How Can We Prevent Late-Diagnosis In Autistic Women?

Research is desperately needed to ensure that young girls don’t suffer because their therapists and GPs don’t ask the right questions. Teenage girls should not be subjected to the treatment I was because mental health professionals do not think of autism. Research is needed and policies changed so that women who enter the mental health system with self-harm, eating disorders or mood instability are automatically assessed for autism.

I was ashamed of my autism but now I am proud of what I have achieved. I am learning what autism means for me and working hard to drop my mask. But, despite having a diagnosis, there are no services to support me as an adult with autism and I have been left to figure it all out on my own.

Autism organisations are working with service providers and people with autism to ensure that we learn more about the condition. Listening to women on the spectrum will allow us to understand what changes need to be made, so that little girls with autism receive early diagnosis and support is available for women on the spectrum, no matter their level of function or ability.

My diagnosis came late, but now I have it I’m determined to understand myself, the world and what it means to be an autistic woman.

Carrie Beckwith-Fellows

Instagram @ruralteacake


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