Being diagnosed as autistic, twice

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December 20, 2017
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Being diagnosed as autistic, twice

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Young SWANs speak

Welcome to another new series – blog posts by our young SWANs. We are very excited to feature the voices of young autistic women. Our first young SWAN post comes from Jasmine Ghibli. I think we will see Jasmine’s writing a lot as an articulate activist for equality. Thanks Jasmine for our fabulous first Young SWAN post.

My name is Jasmine. I am 17 years old, and was officially diagnosed as autistic age 11. I love to write an array of different things, read, draw, listen to music and watch the same set of movies on repeat. I have had quite a few setbacks throughout life, but still remain passionate about fulfilling my goal of equality for everyone (including autistic people). 

Being diagnosed as autistic, twice

When I was younger I exuded autistic traits like a flower exudes its scent. This very quickly resulted in psychology and speech therapy. I lacked awareness of the situation around me and only recall having basic thoughts about my surroundings; strangers who smiled with their teeth a bit too much, constantly sitting in different waiting rooms and a feeling of unsettledness which resulted in me fiddling with my Mother’s cool hands; I liked the texture of her nails on my fingers – it gave a sense of familiarity in such unfamiliar buildings.

If I think hard enough I can recall my first ever memory of what I eventually found out was the beginning of my diagnosis. I don’t recall much about the journey. But I do recall the cherry trees dotted sporadically around the outside of the complex; the soft pink blossoms that were beautiful even as they fell into cracks – almost dissipating entirely bar a single petal. Comparable to an autistic person who is slowly ostracized by society and its followers but despite their situation there remains a slither of personality; passion, optimism, creativity; beauty.  The beauty of the tress quickly escapes my mind as I approach the overbearingly large buildings that lacked the comfort found in your home and gave a sense of uneasiness and ominousness about your future. Inside the building wasn’t particularly any better as any ‘homey-ness’ items were near non-existent; the bouquet of flowers on tables reminded me of the expensive ornaments you were warned not to touch or risk punishment. On the walls were posters with words I couldn’t read and sharp colours. When my Mother sat down amongst a row of chairs I sat in between her legs playing with her hands. With childish and bordering animalistic noises I expressed distress resulting in a clear bag being brought out filled to the brim with dry cheerios.

Eventually time progressed, my speech became better (despite always having a preference for mutism) and a diagnosis appeared. It looked as if I would get the help necessary.

However, a short time after the diagnosis I moved from America to Scotland which is when my diagnosis became ‘unrecognized’. ‘Girls are not autistic’ was the apparent justification of a poor decision that caused a lack of assistance and understanding from people at a vital stage of development. Whilst my Mother pushed for a psychologist, who in very least had the ability to prove I wasn’t mentally challenged if not a lost cause, things became progressively worse as gaps in my education started to appear. The gaps inevitably became larger and larger as I aged due to being sent out of the classroom when having meltdowns and not being allowed back in the classroom until I apologised. I didn’t understand why I should apologise for something I couldn’t prevent?

Better the devil you know

The decision was later made to leave our home town and go to Dundee. That is when I learned to appreciate the maxim ‘better the devil you know’. Bullying became an everyday reality in my new primary school and the cliché ‘bully circles’ often seen in movies occurred. I never pushed back because I thought I was so strong that I’d hospitalise them.  Despite the socialising aspect with my peers being a complete and utter nightmare, there was a level of understanding from the teachers I didn’t get back home. Something better than what I could ever imagine. I had teachers who allowed me to work by myself and a reward system was created for any socialising I could manage. My teachers were very patient and kind to me which was something I never experienced before.  Something originally only gifted to me by my siblings.  My Head Teacher continued this theme and was consistently understanding to tough situations – including two separate accounts of suicide (of course disrupting class). My Mother can vouch for them too, as their empathy and sincerity about my situation encouraged my Mum to pursue my stolen diagnosis with their support.

In one particular meeting, I recall waiting outside the Headteacher’s office on thick, bulky chairs placed outside the door with my feet swinging backwards and forwards constantly as a cheap form of entertainment. The door opened and my mother left the room. I held her hand as well as my Step-Father’s walking out of the school. As we were leaving, my Mother said that they were discussing ‘something left in America’. Later explaining herself, I realised that day I was different. Whilst for many this may seem something to fear or invoke shame, after years of being ostracised, I instead felt validation.

Years passed and eventually I was 11 years old (a Primary 7) – three years after understanding that whilst I was different, I was not an anomaly. I had returned to my home town and, unfortunately, my old primary school. An appointment was scheduled which could potentially result in me diagnosed with Autism.

The room I entered was filled with daylight as the blinds were pulled aside. Multiple different strangers’ faces were dotted around the room. I cannot recall any distinct features to differentiate the by just that their toothy smile was reminiscent to a predator’s. A female voice introduced herself but I didn’t look into her eyes – instead looking at the upper corners of the room where cameras were placed delicately in the corners but still managed to jut out like glass shards. I was asked to recite a storybook, and then another, and another – progressively getting more and more difficult but still simple enough for me to recite back.

They asked me many questions and as I was responding I played with the thick bobble on my wrist – the sequence jingling lightly in the deafening silence of the room. I apologised for disrupting them and placed the bobble on the table. Later, a large box was placed in front of me filled to the brim with miscellaneous toys. A large T-Rex which seemed to swallow the box in all of its glory, action figures, flimsy Barbies, etcetera. I was then asked to think of a way to play with the toys. I felt uncomfortable as I stopped playing with toys a couple years prior and never played with toys in front of anyone other than my sister. I quickly thought of the dinosaur going back in time to return to its home which reflected my feelings at the time too.  I was praised for my creativity but the compliment didn’t sink in. After I finished my story I left the room.

I was diagnosed as autistic after years of fighting for understand that I wasn’t just ‘a bad kid who needed a smack’. Memories start to blur again but I do recall that things would get better as I would get the support I needed. I didn’t, but the sentiment from my Mother was there and the sincerity and hope in her voice was palpable – so I didn’t question it.

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