Maya was one of our speakers at our SEND Conference on 17th March 2023. Below you will find a short biography and the experiences Maya shared.
Hi, my name is Maya and I’m 18 years old. I wanted to share my experience as an autistic and anxious individual in school to shed some light on not just my own experience, but the experience of many other autistic people. I share my experience in hope of comforting other who have gone through the same thing as well as bring change to the schooling system and understanding of autism and mental health conditions!
I am autistic and ADHD. I struggle with my mental health; I am diagnosed with both anxiety and depression disorders. I’ve always wanted to share my experiences with people, with hopes of being able to change something about how autistic people are treated especially during their time in education so I’m very excited to be able to talk today. I’ve never liked talking in front of people, but I feel completely different now that I have a chance to share some of my own personal experiences, hopefully with the chance of change.
I was diagnosed as autistic at 14. No one around me, including myself would ever have thought I would be diagnosed as autistic, ever. Autism? Maya? They didn’t seem to fit together. That’s where the first problem lies. I wasn’t the stereotypical autistic person, I wasn’t ‘rain man’ or ‘Shelden cooper’. In most people’s eyes I was just this shy, sensitive, quiet, anxious girl who would eventually just ‘grow out’ of her habits. It wasn’t until I started refusing to go to school that people started to question whether it was just anxiety.
In primary school, I remember feeling like something was different about me. I can’t say that it was too overpowering though. I was never bullied, and I had many friends who liked the same things as I did, some of which acted in very similar ways as me. Despite all this though, my relentless anxiety separated me from my peers. It left me wondering why I struggled with stuff that my friends didn’t seem to struggle with at all. I used to get a lot of separation anxiety with regards to my mum, this had started in nursery and carried over into primary school. Although I think it subsided a bit as a grew older it was still always there in some sense. During the second part of primary school, between the ages of about 9-11, my anxiety seemed to ramp up more. I remember feeling ‘ill’ often during school times. Looking back, I can clearly see it was anxiety though I didn’t know it at the time. I may have been diagnosed with anxiety at the age of 7/8, but I was never taught to understand how it could make me feel, in fact I only started to truly understand a couple of years ago.
Secondary school is where I really started to struggle. My first few months went surprisingly well but everything went downhill after the Christmas holidays. From January 2017 onwards, I refused school. Even now, I can’t give you one exact reason to why. Every time I thought about it, I would get an immense amount of anxiety and I started having meltdowns every morning before school. My meltdowns often looked like pure anger and fear:
I was angry at my parents for making me go to school,
The teacher for making me go to school,
And at myself for not being able to go to school.
Most of the time I did end up getting in the car, often being forced in a sense by my parents, not physically but with words. I’ve gone to school in my pyjamas before, even my dressing gown, having to get changed in the car or the staff toilets. It got to a point where I’d comply by getting in the car but refuse to go to school on the journey there, in hopes of reducing the arguments we had in the morning from me refusing the get changed into my uniform. There was even a point where I’d open the car door or pull the handbrake whilst my mum was driving. Usually this happened when I felt like I couldn’t verbally explain just how distressed I was, so I showed it through these actions. These meltdowns really put a strain on mine and my parents’ relationship. They were being told by PROFESSIONALS that they needed to do all these things. Not only were they told that forcing me into school was the right thing, but they were also being threatened with fines, and trips to court.
This is where I move onto teachers and the school. My SENCO at my first secondary school was the person who suggested I may be autistic. She told my mum that I was manipulating her and that my parents forced me into school. I spent a lot of time in a place called the sanctuary, I also ended up doing a lot of half days, missing many lessons to self-study in a separate room. I was often lied too, I was told I could go home if I needed to, but it would end with me pleading to leave. I felt like the teachers I trusted were making promises only to break them. Despite this, there were some lovely teachers that I met during my school times.
One of the best schooling experiences I had was at a private school, using my EHCP meant I was able to go for free. The setting was perfect, the school was small (only 200 students from the ages of 4-16) and it started off really well. I was doing a gradual introduction as I had been out of school for a while and as I got more comfortable, I increased my time. The thing is, the SENCO at the school pushed me to do more hours that I could not cope with, I remember having a mini breakdown after it was suggested I stayed a few hours later than planned. It reminded me of my old school, I remember saying something along the lines of ‘this is why I didn’t want to come here; I knew this was going to happen. Thinking back, I’m sad they pushed me because the environment was one of the most comfortable ‘school environments’ that I had been to.
I haven’t just been to one school, between the ages of 11-16 I had been to 4 different educational provisions. In between these, there were times I was not in any type of education setting. Moving constantly meant I couldn’t stick to friendships; it gave me a sense of instability. The thing is, I had to move because the provisions just didn’t work for me. Every time I started a new school or educational provision, I had no hopes of it being accommodating or helpful for me. At a certain point it felt like school wasn’t for me. I felt lonely, frustrated, confused, scared. Why couldn’t I just go? Why was I filled with pure fear just thinking about going to a place where everyone else seemed to accept. Why does no one else feel like me?
CAMHS was not helpful. I first saw CAMHS in year 2, the last time I saw them I was in year 7/8 and they discharged me because they said I wouldn’t engage. The whole reason why I couldn’t engage (anxiety about the environment of CAMHS) was a reason why I needed help from them in the first place.
My relationships with my family members have greatly improved, I can confidently say that they are stronger than ever. The fact that they were broken in the first place makes me annoyed. If I had support, if I had a diagnosis earlier, if everyone had a better understanding, I truly believe my relationship with my parents wouldn’t have ever been broken. I know that my mum especially feels guilty about making me go to school, but I don’t blame her, at all. It wasn’t like she and my dad knew; they were just doing what the professionals told them to do.
Unfortunately, my poor experiences from schools affect me to this day. If I think too much about school, I still get this feeling of anxiety in my chest. Going past my old schools (my first one in particular) gives me that same feeling.
I also feel I missed the so called ‘teenage experience’, being able to learn and grow along with your peers is something a lot of people take for granted. I think this has contributed to my lack of understanding of exactly who I am, as well as further upholding my already existing loneliness, anxiety and depression.
WHAT COULD HAVE BEEN DONE?
When me and the other girls, who came with Patsy today, had a chat about this meeting Patsy asked us ‘what we think could have been done differently?’. I found it hard to answer. Supposedly what was done was for my best interest and honestly, I must disagree for the most part. If I could say anything, I would say everything could have been done differently. Here are some key points I came up with:
- DO NOT FORCE ME INTO SCHOOL.
My parents and teachers lost my trust because of this. I had many embarrassing mornings, coming to school in my pyjamas and having to change in the car.
- DON’T MAKE FALSE PROMISIES.
No one should feel as though they are trapped in school. Why did I? Why was I told I could go home if I needed to only to then be told differently a few hours later?
- DON’T JUST ASSUME.
My mum was told that I was manipulating her. Did no one ever question the reason why I acted the way I did was because of fear? That maybe I wasn’t trying to be ‘difficult’?
- BE CONSISTENT.
I had teachers who were very supportive, and I had teachers who didn’t seem to care, all in the same school. If one teacher is accommodating but another isn’t, how do you expect me to cope?
- Please don’t ignore us. Please don’t brush us off as just difficult. Please don’t treat us like lost causes. Please don’t cause more trauma than we already hold. YOU can make difference; YOU can help us rather than break us.
I could honestly talk about my experiences for hours and hours. I hope this gave you all a glimpse into some of the experiences I’ve had with regards to school as an autistic person. Thank you for listening!