Extract from the foreword by Emily:
“Nurturing Your Autistic Young Person is a book which is very much needed. In some ways, I suppose, the reason that this book exists is because people like me need it to. Let me introduce myself. My name is Emily. I’m 20 years old, and a trustee of the Autistic Girls Network. When Cathy, the CEO, reached out to me to invite me to be a trustee, I didn’t hesitate. I recognised in myself Cathy’s passion and determination to improve awareness, mental health, and education for autistic girls, so I jumped at the opportunity to join the charity. You see, my journey up until now hasn’t been an easy one. I discovered that I was autistic when I was 16. Unfortunately, the road to diagnosis wasn’t easy. Although my younger childhood years passed by fairly smoothly, when I reached 13, something inside of me broke. The death of my grandad, the difficult school environment, and the pressure of keeping up the pretence (aka, ‘autistic masking’) got too much. I began to experience debilitating panic attacks, which stopped me from going to lessons, socialising with my friends, and enjoying my life. Suddenly all the issues I had been hiding for years seemed to be on display for everyone to see.
The years that followed were hard. My panic attacks developed into an anxiety disorder, then OCD, before finally difficulties with self-harm and depression consumed me. I couldn’t understand why I found everything so much harder than other people my age, and why I felt so different. I decided that the world wasn’t made for me, so I attempted to end my life aged 16 and was admitted to an adolescent psychiatric unit. When I asked to leave, I was sectioned under the Mental Health Act.
The number of professionals I saw during this time was countless, and the number that picked up on my autism was zero. I don’t blame them. I blame the lack of education, awareness, and understanding of autism. But the memory of my doctor on the unit saying to me ‘I don’t think you’re autistic, I think you just have high social anxiety’ is a memory now hard-wired into my brain, and one which drives me to want to make a difference for others. I was having obvious autistic meltdowns daily on the unit, and because I was so distressed, my autistic masking was poor, yet it still wasn’t recognised. It was almost like professionals looked at me, saw I had friends, liked socialising, got good grades, and was chatty, and decided that I couldn’t possibly be autistic.
I wish that they had been able to recognise what a distressed autistic person looked like, instead of labelling me with a personality disorder and telling me that my meltdowns were just me being hysterical. I wish that they had been able to understand why I was so distressed, instead of just looking at the behaviour that they could see. I wish that they had been able to see past the stereotypes surrounding autism, and considered for a moment that I could be autistic. When I eventually got my diagnosis six months after I left the unit, the relief I felt was indescribable. Everything started to make sense. But I was also angry at the system which had allowed me to reach rock bottom without helping me. I felt let down. I began to understand that if it wasn’t for me being autistic, and if it wasn’t for the fact nobody around me had recognised that and implemented the support I needed, that I wouldn’t have found myself detained on the psychiatric ward, and I wouldn’t have had to go through the traumatic experiences that I did. And that made me feel both angry and deeply sad.
Unfortunately, I am not alone in my experiences. So many autistic people go unrecognised and unsupported and end up with severe mental health problems. So many are not given support which they are able to engage with, because their needs aren’t met. So many are retraumatised by encounters with professionals and their experiences within the mental health system. Even for those diagnosed earlier, there is the risk of being made to feel like an outcast because of the diagnosis, or of being forced into traumatising therapies like applied behavioural analysis. This is why we desperately need change, and soon. Because autistic children deserve to grow up feeling included, supported, and secure in their autistic identity.
When I began to feel that, everything changed for me. I began to see that I had a future. I was given the opportunity to learn about myself, understand my brain, and start to make adaptations to my life which made it easier to navigate. I needed a healthy way to direct my anger at my experiences into something useful. So, I joined my local CAMHS young people’s council, to be able to have influence in shaping services. I then stood for election as a public governor for my NHS mental health and learning disability trust. I am now in my fourth year as governor. I started university to study mental health nursing, and I qualify later this year. I became a trustee for the Autistic Girls Network, of course. I started to write blogs, give talks, and work alongside organisations to create change.
Autistic Girls Network is part of the change we need to see. Cathy’s book is also part of that change. If every parent and every professional could read this book, autism understanding would come a long way. And this is so important, because at the heart of this are young autistic people all over the world who are continually being failed by the people who are meant to protect them. And that has to change.”