Why It Took 35 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 10 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. 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 35, I was told I was autistic.

I Still Had A Nine Year Wait To Get A Diagnosis

A neuropsychologist 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. I presented the team with piles of 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 people, 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 immense struggle whilst 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 doesn’t see.

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 needed to ensure that young girls don’t suffer because their doctors don’t ask the right questions. Teenage girls should not be subjected to the treatment I was because therapists do not think of autism. Women who enter the mental health system with self-harm, eating disorders or mood instability should be automatically assessed for autism.

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.

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.

A variation of this blog first appeared on Autistica.org.uk

HuffPost UK is running a month-long project in March called All Women Everywhere, providing a platform to reflect the diverse mix of female experience and voices in Britain today

Through blogs, features and video, we’ll be exploring the issues facing women specific to their age, ethnicity, social status, sexuality and gender identity. If you’d like to blog on our platform around these topics, email ukblogteam@huffingtonpost.com

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