My Journey Of How I Found Out That I Am Autistic
I was diagnosed with autism when I was 16, after years of struggling with my mental health and finding myself sectioned on a CAMHS (Child and Adolescent Mental Health Services) unit.
One evening when I was on home leave from the ward, I sat my parents down at the kitchen table and presented them with an extremely extensive list titled ‘Why I think I might be autistic’, with references to back up my points. Now I think about it, that’s probably one of the most autistic things I could have done. Let’s be honest, they could’ve just handed me my diagnosis there and then!
There were many factors which led to me writing that list.
First was the belief that I had always found things harder than other people my age. It seemed to me that I was constantly confused and overwhelmed at every instruction, task, expectation and situation, whilst many of my peers were just able to get on with things.
Secondly, I had just started studying Psychology A-Level and I remember being at the unit school and coming across a study explaining the link between Obsessive Compulsive Disorder (OCD), which I was suffering from, and Autism. It both surprised and interested me that many autism traits can manifest as OCD-like symptoms. This was made even clearer when I was diagnosed with traits of Obsessive-Compulsive Personality Disorder (OCPD). OCPD refers to a range of supposedly maladaptive personality traits such as perfectionism, orderliness, attention to detail, a need for control, difficulty with flexibility, and so on…all things which are autistic traits too.
A third factor was my realisation that you didn’t have to ‘look’ autistic to be autistic. Ironic really, seeing as it is this view I spend so much of my life now fighting against. At the time, the idea of autism in my head was a mixture of stereotypes and stigma. Although many of these stereotypes are true for some autistic people, I am able to make eye contact and I am very sociable…neither of which fits what someone typically expects of an autistic person. My view of this changed when I met an autistic girl on the unit. It surprised me when she told me that she was autistic. She was chatty, loud and made eye contact, like me. She challenged the stereotypes in my head and explained to me that autism in girls can go more unrecognised and undiagnosed.
Another factor was my Aunt. She is a specialist in special educational needs in a school and also works for an Autism and ADHD Charity, and my cousin is also autistic. She had mentioned to me and my Mum multiple times over the years that she thought I was neurodivergent and possibly autistic, and was very keen to encourage us to get me assessed.
The final, and possibly most persuading factor, was my belief that I had always felt different. It’s hard to explain this because I know many young people feel different from their peers for one reason or another. But I had always felt different. From when I was not interested in talking to other kids because I just wanted to read, to when I was bullied, to not understanding why other people acted how they acted, to not knowing how to behave in social situations, to being made fun of…. The reasons why I felt different were never-ending.
I was desperate for an answer.
So I sat down with my parents and the list. The list had many points as to why I thought I was autistic, including not liking loud noises, my excessive perfectionism, my difficulty coping with change, my anxiety, struggling to wear certain materials and textures. It was a long list, but I can’t remember much of it.
My parents agreed that they wanted to pursue this. I think they too were searching for answers. So they set up a meeting with my consultant at the unit to discuss my early childhood. After this my parents weren’t told anything, but a doctor came to see me. He said to me that he didn’t think I was autistic, but that I just had high social anxiety. I accepted that and the topic was forgotten about for a while.
It wasn’t until I was discharged from the unit and I started at community CAMHS that it was raised again. A locum consultant saw me for two minutes and then spoke to my mum, asking if I had been assessed for autism. My CAMHS consultant then also brought it up.
My parents decided that we wanted to pursue it further, but the NHS waiting list was very long. We were told it could be a year or two, and even then, the generic autism assessment is biased towards how autism presents in boys. My parents decided to get me an assessment quicker. I was struggling with suicidal thoughts and self-harm, and the possibility of hospitalisation was never far out of sight. I was only 18 months away from starting uni, and we needed to know if I was autistic so I could access the right support.
So, we went to a private clinic, where they conducted a more comprehensive assessment. They read all my school reports from nursery to year 12 before my appointment. Then the assessment took half a day. They wanted to know everything about me. They did activities with me, like me having to read a picture book and tell them what was happening. There was lots of questions. At the end they said a lot of things about how long I had struggled with my mental health for, about being diagnosed with an emerging personality disorder, and they said that they thought one thing described the reasons for everything - ‘Autism’.
I left that appointment feeling so relieved.
Finding out that I am autistic gave me a deep understanding of myself that I would never have found elsewhere. I realised that feeling how I did wasn’t my fault. And that was the start of me trying to put the broken pieces of my life back together again.
I realise that I am immensely privileged in being able to access a private assessment. We should never have had to go private. The NHS waiting lists for assessments should not be years long. The screening criteria should not be so biased and based on such a limited understanding of autism. Unfortunately, while the system remains how it is, there will be many without a diagnosis who aren’t as fortunate, and this isn’t fair.
Every autistic person deserves access to a diagnosis within a reasonable time frame, if they want one.
All my love, Emily.
Twitter: @ItsEmilyKaty