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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