A is for Autism:

School From an Autistic Individuals Perspective

How did I end up going from a predicted A* student to a secondary school drop out at 15 is a question that has plagued me for years. I’ve finally found the answer to this, but I’ll fill you in with the story first.

It was a drizzly September morning in 2008 and the grey of the clouds matched my mood. It was my first ever day of secondary school. Although, I felt a little excited because during transition week, the activities and school work seemed right up my street. The key word there though is transition. It was a massive change and I’m really not keen on change. In fact, change overwhelms me.

A big change would be that instead of being driven to school by my Dad I would get the bus with everyone else. I remember that I always felt like I was behind my peers in maturity. I couldn’t bear the thought of walking to the bus stop on my own.

‘What if I get the wrong bus?’

‘What if the older kids are horrible to me?’

‘What if I miss the bus and I’m late on my first day?’

My autistic brain always ponders the ‘What if’s?’, it is a phrase that is on loop like a broken record.

My anxiety escalated, although at this point in my life I didn’t even know what anxiety was. However, when I look back I was always an anxious individual. My father walked me to the bus stop for several weeks. I recall feeling embarrassed and a sense of shame as the school bus pulled up and the other people on the bus glared through the glass. I was too old now to be walked and waved goodbye by my parents.

What I really wanted from my new school was to finally have friends, ones that I felt comfortable around. A massive sign of autism in girls and those with disguised presentation is struggling to maintain friendships, always flitting from group to group. I often felt like I’d go where the wind blows, whomever was going to be my friend that day, or that week would be my best friend. I would idolise them, but I could never maintain them. I really struggled with more than one to one, group conversations and social rules confused me.

Yet for years, particularly in friendships I would heavily mask. I would mimic my peers. Teachers saw a somewhat shy, model student who wouldn’t say boo to a goose and was destined to do well. However, as my mental health deteriorated, my concentration levels started to diminish, my wanting to understand how to navigate the world around me and combatting cruel comments and bullying during those years in secondary school everything started to overwhelm me.

One form of escape that I will always be thankful for was writing class on a Wednesday lunch time with my favourite English teacher, Mr Hankins. I have always found it easier to communicate through the written word, and I believe that I was hyperlexic as a child.

I began struggling with my mental health in year seven, and as the years went by this escalated into frequent appointments with CAMHS (Child and Adolescent Mental Health Services), meetings between parents and teachers, education welfare officers (for my attendance) and eventually a psychiatrist.

I started year seven with no understanding of what anxiety and depression was, now by year nine it felt like I was in a living hell that I had no escape from and I just wanted to understand WHY. 

Like many others with disguised presentation I was first diagnosed with Mental Health Conditions. Autism does have a lot of co-morbidities, so many conditions can go hand in hand with autism. The list I picked up by age 14 was:

  • Generalised Anxiety Disorder
  • Clinical Depression
  • OCD tendencies
  • And almost anorexic.

The reason I say almost anorexic is I met all of the criteria but I was classed as a few pounds away from the criteria weight. In this article it states that ‘One in four people with an eating disorder has autism and current treatments might be failing them’ – https://www.abc.net.au/news/2021-05-05/eating-disorders-and-autism/100103108?fbclid=IwAR1YesUJDpTPwkdYxYhd_N0JS_wr8fychtA4BwkmV2xAR6TnuVbyM71ntPw

I believe I was one of those four, and the factors of bullying, keeping up academically while being classed as truant because I couldn’t cope with the social expectations and sensory environment are what contributed to being so ill. It was a way to control my environment and I was always a sensory eater.

The sensory environment of school was another story. Chairs screeching across floors, markers squeaking against the whiteboard, what was meant to be low level chatting turning into 15 conversations all at once, the hum of the electricity that sometimes cut out because it was so old. Just getting through a morning is exhausting, let alone a whole day, five days a week.

After being diagnosed with these conditions, things were not improving. I wasn’t attending school, I was going to a day hospice at St Cadocs and truth be told I felt like the loneliest and misunderstood person in the world at this point. I still didn’t know I was autistic and I didn’t understand why I couldn’t seem to navigate the world the way my peers seemed able to.

By age 16 I finally understood my WHY and I was diagnosed as being autistic, although reluctantly. However, finally I had it, I had my diagnosis. I didn’t have much support around understanding it, but I had inside knowledge due to my brother also being autistic. In terms of my education though, by 16 it felt like this diagnosis was too late.

Earlier I wrote ‘How did I end up going from a predicted A* student to a secondary school drop out at 15?’ – Well, the answer is I didn’t have the right support and accommodations to help me thrive in school and not just simply ‘survive’ school. I didn’t even have a diagnosis for a start.

This is why, I am so happy to announce that we have two new team members are joining Team AP as  Family Support Assistants, , Jodie Davies and Amy Hopkins!

Mum-of-two Jodie says: “I first heard of AP whilst I was in uni and attended a volunteering drive. This led to me helping in their charity shop a little while later. AP have supported my family and I love that I am now able to give a little something back.When going through the statement process with my son, I found it isolating and daunting not having someone to turn to. This is where we can help. I believe every child and family should be fully supported. Education is key and I am passionate that every child should have the opportunity to become the best that they can be!”

Amy says: “As ‘the head’ of a neurodiverse family, being able to help families in similar positions to mine is hugely important to me and something I’m very passionate about. I have had so much help and support from AP Cymru and to become part of the team is an honour. I hope to help you all as much as I can, and to point you in the right direction for getting educational support and accessing services. It’s a system I have personal experience with and I look forward to using my knowledge in a productive way.”

These ladies have a personal insight and a great knowledge of Autism and the Education System and I believe that they also feel as strongly as me when they say autistic individuals should not be denied support (even without diagnosis) and that autistic students needs should be met with appropriate accommodations.

As this excellent graphic from @Stand Up LD on Facebook states:  

If only AP Cymru were around when I was 11 and going through those turbulent times in secondary school. I know they would have helped me to access diagnosis sooner as they do now for so many families and I may have had a better understanding of myself during those times, plus the emotional support that I so desperately needed. However, I know that Team AP, including our new team members are going to support thousands more individuals who are like me, who may feel afraid and lonely. I know deep in my heart that those individuals and their families are going to be supported to the best of AP’s abilities and that makes me really happy.

My hope for the future of autistic individuals and their education is that they have the right support in place and that they can flourish to their full potential, the way I sometimes I wish I could have. However, I am now writing blogs sharing my insight for an amazing charity that has helped me to find who Cerys is behind her chameleon disguise.

Thank you for taking time out to read this!

Take care and stay safe.

Cerys.