Twenty years ago, when I was diagnosed, so much less was known or understood about autism.

Nursery school picked up that some of my behaviours were "not normal", and I was referred before starting primary school. Naively, my parents turned down a statement of educational needs (now called EHCP), thinking that because I did not have behavioural issues, only social ones, that this could be self managed.

I went through school only with School Action Plus (now called SEN support), and this misunderstanding meant that the things I needed help with were not given, because I was seen as academically able. Schools were only focused on quotas and results, and this came second to wellbeing.

At the time I was deemed to be a conformist, this would now probably be called "masking". The school did not see the real struggles that were taking place every second of the day that I was there. From the constant noise, bright lights and many other forms of sensory overloads that I was experiencing, to the lack of understanding, I would mask all day, which resulted in meltdowns happening at home - something school never saw. 

My anxiety would reach new heights with each passing week, and this would be true for the 13 years of mainstream school.

My parents would email the school, almost daily, about bullying which would take place. I often have a very good recall of events and information, but I was doubted at every turn by the school, who would often say that this was just my misunderstanding of events. "It’s just your perception" was the most commonly used phrase.

A small example out of the hundreds of events that were deemed "just my perception" included: being hit on the head with water bottles; being attacked by groups of other students; being pushed and shoved in corridors; large groups of people chanting my name in the corridors as I passed, and during teaching time in class; name-calling and mimicking of how I spoke or the fact I struggled to communicate; having work graffitied.

I was even passed a note with a death threat. This is only a small selection of events that happened and I could tell the stories in great detail of many more. 

These events that were considered just my perception ruined me inside and shattered any confidence I had, meaning I had no trusted peers. I would often sit in complete silence as I did not have the ability to find how to communicate, I had no interest in what I considered to be childish and silly topics they would choose to talk about. 

On special days, important skills lessons took place focusing on the real issues in life that help people to become independent adults. Each topic was covered for a few hours in a five-year secondary school experience. Because of my heightened anxiety, with a change of routine, schedule, location and unknown staff, without support I could not cope. The solution from the school was to exclude me from these days, in order to relieve my stress and their need to find support for me during these days.

The problem is that although this relieved my anxiety for that day, in the long term I missed out on all the important skills and lessons. The impact was that I was never given any support or plans for the future. This not only affected my confidence, but on leaving school, I had nothing. Although academically able, I had no ability to attend any form of higher education beyond Sixth Form at the same school.

I was and still am unable to do anything independently. I lack the social skills to interact alone, and have never been able to leave the house alone, answer a phone or any basic communication outside of known people.

A big misunderstanding is how I can communicate well with people I know and trust, yet lack the ability with strangers or to do anything alone, despite on paper looking as if I would be capable. 

Bullying in school had a big impact on my life, but the biggest problem of all is that in my experience, school focused on exams and exam results. Wellbeing and the future came second to this.

Despite achieving good results from an academic point of view, these results are useless because I cannot use them, because I am part of a forgotten group of people in the eyes of the educational system .. people who achieve academically, but who have nowhere to go as they cannot leave the house alone or do anything independently.

I think that more awareness and focus needs to be given by schools on preparing people for what matters in life, rather than a result on a piece of paper judging how well someone can learn facts to pass an exam. Organisations such as NEAS can help fix the broken pieces, but the most important thing is to make sure the pieces never become broken to begin with.

Autistic voices and experiences will be front and centre of our Autism Acceptance campaign this year as we push for Everyday Equality.

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