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.

 

Head shot of Carrie looking at the camera. She has a shaved head and wearing a bulky black and white scarf.
Autism means I think in pictures, have an internal sat-nav and experience emotions 100x stronger than non-autistic people.

I Still Had A Nine Year Wait To Get My Autism 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.

Carrie is pointing a instant camera towards the viewer. She has a polaroid in one hand. The camera hides her face from the viewer.
35yrs of masking my autism means I’m not comfortable being my authentic autistic self with others. I don’t know if I’ll ever learn to not mask.

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.

Carrie and Lisa stand together smiling at the camera. Carrie is wearing a pink wool hat.
Autism has been a gift in our marriage. Some days are hard, but knowing I am autistic helps me be a better wife.

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.

 

Author: Carrie

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6 thoughts on “Why It Took 35 Years To Diagnose My Autism

  1. Wow!
    A very moving account of a little girl and later a grown woman repeatedly let down by ‘the system’.
    A fighter who has fought all her life and is still fighting, not only for herself, but for others.
    The world is a better place for your persistence.
    Well done Carrie.

    Posted on April 1, 2017 at 10:52 pm
    1. Thank you Pam, those are very kind words. You know me well, and my desire to enoucrage and raise awareness. Thanks for reading. Carrie x

      Posted on April 8, 2017 at 6:55 am
  2. Thank you for raising awareness about autism in women. Not only do we also have EDS in our family, but autism too. You are so brave.

    Posted on April 7, 2017 at 10:48 am
    1. Thank you Debra. Autism has always been close to my heart from a young age. I worked with young people and children with autism for many years and can’t believe that I didn’t recognise my own autism at that time. I’m hopeful they will find what links autism and EDS in the future. Carrie x

      Posted on April 8, 2017 at 6:54 am
  3. Carrie,
    Your story is remarkable. Thank you for sharing it so forthrightly and powerfully. It moved me and I’m sure it has moved many others. The chain of events that led you to where you today with your autism diagnosis and all the other serious ailments reads like a horror crime novel; none of it should have happened. Your unflinching and raw sharing of your story will undoubtedly help others avoid the same fate. A mother or brother or even an autistic person him or herself will read it and realize something and make a critical change that will turn their life around. I am an NT married to an autistic/asperger diagnosed only in his 50’s. He led a life of pain and confusion over being and feeling different–though far less dramatic or hurtful than yours. He had almost given up on marriage when I met him and decided to see his qualities first. I could relate to your story because of his stories. I’m glad you found a life partner, just as I’m glad I found Ken. Read sometime of our story in our diablogue–address at the bottom of this comment. We would love to hear you thoughts on the things we say about relationships, and we would love to hear your own thoughts on the issues we’ve taken up. Carry on, Carrie. You are a special and invaluable person in the world with so much to give. ~Christina (with Ken) iamautisticimnot.wordpress.com

    Posted on April 27, 2017 at 1:25 am
    1. Thank you Christina for reading my story and sharing how it has touched you. I love the style of your blog. It’s very interesting to read both sides to the discussion. I have recently started a blog all about my late diagnosis. It has a few blank pages which I need to complete but if you are interested in following my autism story more closely you can find it at http://www.learningtobeautistic.com

      Posted on May 24, 2017 at 4:56 pm