Life of an Undiagnosed Autistic Female
From a young age, I knew I was different. Everyone knew I
was different, that was the obvious part, the least so obvious part was that I had autism & ADHD. Why? Because as a young girl, I was cute, considerate, and maintained eye contact - your stereotypical ‘good girl’. The type of
girl that would see my mother getting comments on how wonderfully behaved I was, I mean - my
brother's nickname for me was goody two shoes! You wouldn’t ever have to wonder where I was
because you could be guaranteed to hear me stimming to loud music. Singing and dancing are,
and have always been my favourite things. Family and friends were often surprised by my vast
knowledge of musical artists, and how I knew all the lyrics to so many songs. Music was an
escape for me, I could (and still do) spend hours getting lost in all that music is. One thing that
sticks out to me when I think back to my childhood was my deep, and oftentimes disabling
empathy - one of my very earliest childhood memories was when I was around 4 years old, it
was winter time and I needed a coat, so my mother took me clothes shopping. I very vividly
remember crying and telling my mum that I didn’t want her to buy me a coat. I recall feeling that I
would rather go without a coat than for her to go without money. I was 4 years old, today I am 29
years old, and almost a year into this new found understanding of myself through this new lens
of neurodiversity, and the empathy is still as strong as it was when I was 4. How could I, or
anyone around me ever have known I was neurodiverse based on the above?
In my early to late teens, things weren’t as sweet as my younger years. I would assume it’s
common for most young women to experience struggles around this age, but for me it was
coupled with constant negative feedback within my home environment and school. It was
around this age that I really started to feel like a total outsider, like no one could understand me,
and it became obvious when people didn’t seem to like me as much as they liked my peers.
Everything that I did, everything that I said and every effort that I made was mostly always -
wrong, or weird. And, whilst I understand that everyone in my life has mostly always done the
best they could with what they knew (or didn’t know in my case), it still doesn’t take away the
years and years of feeling like I wasn’t good enough with a desperate need to fit in and be
loved.
I often hear people saying that labels aren’t important, yet what they fail to understand is that we
get labeled anyway, and honestly? I would have much rather known that I was autistic from a
young age so that my family & school could have accommodated and validated my sensory
needs, accepted me during my non-verbal moments, embraced my strengths and loved me
through my moments of overwhelm. Instead, I have been given incorrect and harsh labels my
whole life. When I replay these in my mind, I almost feel like I’m in a film where my whole life
gets played out in front of my eyes and all I can hear is:
“I’ve never met anyone as rude as you”,”Ugh, you are so sensitive”, “Just get over it”, “Try
harder”, “Get off your high horse”, “You think you know it all”, “Stop being so dramatic” “What’s
wrong with you?”, “Stop being so stupid!”, “You’re so negative”, “Not everything revolves
around
you”, “Why do you act like that?” “I don’t know anyone who reacts to things the way that you
do”, “Why are you jumping up and down like that?” “Stop being weird!”, “Why do you have to
make everything so difficult?” “You are always creating problems”
Then my heart sinks as I can barely talk about my inner child without an ever flowing fountain of
tears falling from my eyes. I feel for her. The confusion, the pain, the trauma. We are
overstimulated - not rude. We have special interests - not a high horse. Some of us feel and
process things deeply - not dramatic.
My diagnosis came at an extremely crucial time because the family whose son I shared a child
with repeated the same cycles as above, and all of the pain came crashing back to the surface.
Before my diagnosis, I felt like I was never going to be loved or understood in this world. I felt
like there had to be something inherently wrong with me - for as far as I could see, I had depths
of empathy for others that I couldn’t even explain, and I always made excuses for people’s
unfair behaviour because I could always empathise with why they act the way that they do - yet
it seemed no-one cared about me. The truth is, the vast majority of the family ostracised me for
simply being different. I never did anything intentional to hurt them, in fact, I went above and
beyond in my efforts to build something with them, but they had already decided that I was not
worthy of respect and inclusion. They continually rejected every single one of my attempts to
bond and build healthy relationships with them. They knew I was suffering due to their
mistreatments and misunderstandings of me, yet they did not care. I tried communicating face to
face, over the phone, in a letter, via text - nothing worked. They would either ignore my attempt
at healthy communication, tell me that I needed psychological for expressing my feelings, or
laugh at me for writing such ‘long messages’. Today, they know that I am autistic, but it still
doesn’t get through to them. They still somehow believe that the reasons for which they dislike
me, or find me difficult have nothing to do with the differences in our brain wiring - it’s like they
are affirming to themselves that I am an awful person so that they can avoid having to own up to
their mistreatment and misunderstanding of me. I’ve suffered, burnt out, and melted down
multiple times over this. They have seen me suffering, and they do not care.
Without the diagnosis, I wouldn’t have been able to understand why people perceived me in the
lights that they did. It helped me to see that the issue never was me - the issue was a different
brain wiring that had failed to be acknowledged. With that, I have been able to be kinder to
myself, and I’m learning to find acceptance in the fact that as an autistic person, I am often
going to be misunderstood because that’s the world we live in, but I will start to use my voice to
advocate for myself and other autistic people out there in the hope that we can create a better
educated society where people’s differences are embraced, understood and accepted.
It’s simply not enough to assume that you know what autism is, because we are all so different.
Ask us what it means for us and know that, by understanding us - you are accepting us.
We really do deserve better
With love,
Soraya
Helpful Link for More context
https://www.madinamerica.com/2021/10/neurotypicals-misunderstand-mistreat-autistic-p
eople/?fbclid=IwAR1eFbqrLkI7MhzNuibW_XPZtM1QSAL0Q8K0KeGZmW1mMbI7tywEJ_3J
Note from the Xabilities Team
This story is a personal account of some of the real life issues and struggles of people living on
the spectrum. At Xabilities, we would like to promote a safe and open space for people to share
and discuss any struggles that they go through.
Please feel free to comment below some of your own stories on things you struggle with as a
neurodiverse person, keeping respectful and kind, whilst staying mindful of others eg. trigger
subjects.
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Aroha nui
Xabilities Team