Getting a late diagnosis of Autism, after 12 years of battling Anorexia – Guest Blog    

Our latest Guest Blogger shares her battle of anorexia recovery and her late diagnosis of autism. An emotive poem and blog. 

Sometimes
I feel so angry, full of rage and pain.

Sensitive
to everything, every sound, movement, voice, smell, touch.

Nothing
feels okay and nothing feels safe.

The ball
of fire burning inside of me that won’t cool down.

The
constant bubbling of anxiety that just never seems to ease.

Hurting
so badly, where I did not know where to turn

And how
to help myself. Feeling like I was made of tissue paper.

Easily
tear from the smallest touch,

So
fragile and weak from being in a world that doesn’t understand me

That one
touch could just tear me to shreds.

The holes
start forming and crumpled edges begin to fray,

Before
you burnout and have no more energy left to give.

Shutting
down and retreat within myself,

Going
mute and being alone is all that I can do,

Not being
able to face the world or complete any basic task,

That for
others looking in can be found so easy.

The need
time to recover until I can start again but never know how long that will take.

I don’t
mean to be ‘rude’, I am just struggling to find my way through a world that was
not built for me.

I am
constantly exhausted trying to be like everyone else and never myself, I am
tired of being someone I am not.

I am
tired of being misunderstood, of not being seen and heard.

Always
feeling that I will tear any minute, when at times I never know why.

I knew
many things in my mind and how I felt never made sense,

I felt
different on every level,

How I was
on the outside never reflected what was going on inside.

Everything felt so hard in every aspect of my life from a young age that I could never pinpoint and make sense of; despite battling with a severe eating disorder. Until I was diagnosed with Autism at the age of 23.  

I suffered from Anorexia for 12 years, after being in 10 inpatient hospitals and nearly losing my life multiple times. I felt the intense frustration of not knowing why I wasn’t getting better; of why I couldn’t break this cycle; of why treatment and therapy did not work, which resulted in constant relapses. I felt the deep pain of thinking ‘‘what is wrong with me?’ day in day out, so many blocks and barriers where I would be just stuck behind brick walls.  

Then suddenly things made sense. The answer to many questions I had circulating my mind as to why I am the way I am and why I struggled so much. Why things did not work for me like things did for everyone else. Why I had such a poorer outcome –  because I didn’t know I was autistic. My needs as an autistic person were not being met and I had the wrong treatment to support me when also working with having an eating disorder. 

‘The relief of getting a diagnosis untangled this crazy knot I had inside me that kept getting bigger over time with the confusion and detachment I felt within myself for as long as I can remember. You feel like you suddenly know yourself and have a clearer picture of who you are, how you work, and what your struggles are but also your strengths. You have an understanding of yourself. This has shifted my world into a better light, allowing me to be my truest and most authentic self.’ 

The relief of getting a diagnosis untangled this crazy knot I had inside me that kept getting bigger over time with the confusion and detachment I felt within myself for as long as I can remember. You feel like you suddenly know yourself and have a clearer picture of who you are, how you work, and what your struggles are but also your strengths. You have an understanding of yourself. This has shifted my world into a better light, allowing me to be my truest and most authentic self. It has helped me find my voice – to not change who I am and to know how to communicate what supports me in my recovery but also in areas of my day-to-day life that I may need more help with, so I can reach my full potential and use my strengths. 

Alongside the feeling of relief from getting a diagnosis, I feel anger. Deep sadness and pain, grief and loss from the life I lived at war with myself, at others and at the world that I never felt a part of. Being misunderstood and never being able to fight for myself because I couldn’t communicate what was going on inside in the way I wanted to. I contained my suffering, I internalised my fears and put on a mask that said something different.  

Not knowing I was Autistic most likely contributed to the development of my eating disorder and if was recognised sooner, my life would have been different. I have faced some traumatic, painful and negative experiences from being in treatment that could have been avoided which is why having an early diagnosis and individualised care is key, especially in the area of eating disorders. It can change the story of someone’s life and possibly save their life – as I know I am lucky to be here today. 

Now knowing I am autistic has helped my recovery massively in so many ways and is the longest time I have been out of hospital and managing well throughout the 12 years I have been unwell for. 

I am still processing this new information about myself and I know it will definitely take time to understand and connect with more as I continue on my recovery journey. 

Here at Orri, we frequently have clients who have ASD alongside an eating disorder, and we are able to identify with them and their loved ones an approach to treatment that accommodates their individual needs. Our approach provides several different therapeutic modalities, meaning that we can provide each client with the best suited approach for their recovery needs. 

For more on how Orri treats clients with autism, you can read Consultant Psychiatrist, Dr Sara Morando’s blog, here. 

If you have felt inspired by this experience and wish to feature your own on our website, you can submit a Guest Blog for Orri here. 

If you or your loved one needs support, contact us here. 

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