My Story by Emily

People’s stories

Emily would like her story to be used to inform and change the way the mental health system learns about autism.

When I was sixteen, my ability to function crumbled. I had always struggled and only gotten by because I had to but this time I couldn’t. I spent most of my time at home because I was too anxious to go outside, having one too many panic attacks in supermarkets and around strangers, my social life was limited to my father, and after living in constant emotional pain, I became suicidal again. It was one of the worst periods of my life.

After a worrying event and a bit of persuasion, I went back to CAMHS (Northorpe Hall first until I reached the top of CAMHS’s waiting list) and forced myself to be completely open and candid with everyone I was passed to. It was an upsetting and draining affair and did nothing to help me. The only reason I made progress at all was because my father had his own methods, namely graded exposure. I remember asking him and countless others what’s wrong with me, when will this be over, but no one had an answer.

Over a year later, in either late 2012 or early 2013, I was assessed for adult services and the psychologist at the Psychological Therapies Service in Ossett instructed me to go to Pathways as well as Connexions (the latter was a mistake). At Pathways I spoke to a social worker, who asked me various questions, and brought up Asperger’s (I had no idea what it meant. I think he said autism when I asked). I thought he was mad.

My experience with autism was extremely limited

My experience with autism prior to that appointment was intense but extremely limited to my half-brother, who had other conditions as well (ADHD, Global Develop Mental Delay and Learning Difficulties). I didn’t know about the spectrum or how varied and unique autism could be to each person, so my thoughts at the time were my brother and I couldn’t be more different, so how can I have autism?

He passed around “the autism theory” (as I liked to call it) and eventually I had another appointment with a psychiatrist I’d spoken to before. He asked me a list of questions in a room with too many people and agreed I needed an official assessment. I didn’t understand and wanted to research but I didn’t because I was scared. Aside from the fact I didn’t want to accidentally project what I read, I was worried that if I believed I had autism and got attached to the idea of finally having my answer, the disappointment would be devastating if the assessment determined I didn’t.

After two and a half years of wondering, dismissing the idea as a joke and feeling as lost and miserable as ever, I had my first appointment. Then another. Then another. I had four appointments in total, spanning over two months, one running over three hours long.

He told me I had autism. I burst into tears.

Finally, at the last appointment, I met with a different man and he asked me one more question. After I replied, he told me I had autism. I burst into tears. I had planned on laughing but I’m pretty sure I cried. I asked him if he was certain if he was going to eventually call me and tell me he’d made a mistake. He said no, there was no doubt that I had autism.

It took years to accept my diagnosis and stop waiting for that phone call. I still struggle sometimes and it’s been over six years.

The point of this story is that there could be many autistics out there who don’t even know they need a diagnosis, who spend years thinking they’re defective and wondering what’s wrong with them when really all they are is different.

Autism Awareness is an important stepping stone but it isn’t the end. The social worker had a deeper understanding of autism because he spent a lot of time with autistics, he got to know them, which enabled him to ask the right questions and listen for certain responses that indicate autism. If we want the mental health teams to truly understand autism then

they need to spend time with us, not in board rooms and seminars but in our environment and engage with us. There’s only so much you can learn from a textbook and the way forward is to learn from us with us.

I am very grateful that at least one man has done so because if it wasn’t for him, I might still be looking for my answer and that concept is terrifying.

By balaam

I am married with one wife, three grown kids, one cat and no hair.

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