My Journey to a Diagnosis of Autism
A question I’ve heard lately is “Where are all the autistic adults?” That’s right, adults with autism.
Many forget that children with autism become adults with autism. Autism is not a condition someone will grow out of.
It is a part of who we are and affects how we interpret everything in the world around us, from colour and music, to conversations and communication, autism affects every part of it.
***Please be aware, this article discusses issues around mental health difficulties and self-harm. Some readers may not wish to continue.***
But what if you weren’t diagnosed with autism as a child? What if you survived school without extra support, without extra help or without an understanding of why you struggled to do the things other people seemed to do with ease?
This was me.
I wasn’t diagnosed with Aspergers Syndrome (a diagnosis still used here in the U.K.) until I was 29. Yes, that’s right, 29.
By this point I had survived school, 3 university courses, several jobs and numerous failed relationships. However, whilst I appeared to be okay on the surface, I was really struggling with the world around me.
Once you’re in your 20’s, it seems that everyone thinks that you will know how to make friends, have successful relationships and cope with the changes growing up brings.
I didn’t know how to do any of this.
I didn’t make many friends at university and then had to deal with other students teasing and laughing at me when I misunderstood something. Relationships were challenging. Very few partners are able to cope with a girlfriend dictating what happens and when, becoming extremely upset at last minute changes of plan and being picked up late.
Possibly more damaging, was that I also had an understanding of relationships based on Jane Austen novels. Whilst romanticism isn’t wrong, I found it very difficult to understand why, after dating for a few months, boyfriends never proposed.
My self-esteem was at rock bottom, I believed nothing I ever did was good enough and sank into depression. The only thing that kept me going was my routine of work. Being surrounded by pupils with special needs who expected me to be there and help them meant I was, for a few hours, able to forget my own problems. However, the minute I got home I lay on the couch and wouldn’t move or talk to anyone for the rest of the night.
I was diagnosed with depression and prescribed different medications over a period of time but nothing seemed to help. After becoming involved with a man who destroyed what little was left of my self-esteem, I began to think that I couldn’t carry on.
When the next school holiday arrived, I couldn’t face the thought if being off for a week alone, trapped with my own thoughts. I took an overdose. It was the first of three attempts to end my life over 9 months, all of which occurred at the start of a school holiday.
Each time I was discharged from hospital, after a day or two, with no further support or help in place. I would have a conversation with a mental health worker whose main concern was whether I’d try and do it again. They seemed scathing of my reasons why I had tried it, putting it down to being drunk. They assumed I had got drunk and then overdosed when I wasn’t thinking clearly.
I had actually bought the alcohol to deliberately to take the tablets with.
They told me I had a good job and a nice home and lots to live for. They asked me why I couldn’t see that.
I’d be discharged and sent home. I’d sit and think about how useless I was for the rest of the holidays.
Luckily for me, I had an amazing G.P. He received a letter from the hospital outlining my visits and after the 3rd attempt he referred me to a psychiatrist. He immediately recognised that I displayed signs of autism and the final leg of my journey to a diagnosis began.
Could it be Autism?
It wasn’t a complete surprise. By this time I was working with pupils with special needs, including those with autism. I hadn’t planned this when I started teaching, I trained to be a secondary English and Drama teacher but after quickly realising that I had particular success with pupils with special needs, I moved into this field and never looked back.
During this time I completed a post-graduate course at university focusing on special needs. It involved a module on autism.
As the condition was explained and strategies were taught, I realised that I experienced many of the difficulties associated with autism on a daily basis. The final confirmation in my own mind came when we were given some example assessments that those with autism would find difficult.
One particular task involved looking at 34 sets of eyes. We were asked to look at the eyes and select which emotion was being expressed, from three possibilities.
I was lost.
Having six sets of eyes staring at me out of each page was over-whelming. Not helped by the fact that, to me, they all looked the same. I was baffled and confused at what I was being asked to do. How on earth could you figure out what people were feeling just from looking at their eyes?
Looking around the room, I realised most people were filling in this form with relative ease. I tried, but if I’m honest, a lot of them were guesses.
I scored the lowest in the group.
I was told anything below 15 would suggest a difficulty with this task and a possible indication of autism.
I had scored 12.
You may ask why I didn’t take this further and why I didn’t go to the doctor with my suspicions. Unfortunately, by this point, my self-esteem was so low that I didn’t think I would be believed.
Once I was placed on the autism pathway by the psychiatrist, I began the process of assessment. This involved a long conversation with a specialist who came to my house to talk to me and my Mum. She jotted down a history of my development from pregnancy to present day. I listened to my Mum describe how I hardly slept as a baby and cried constantly when left alone. I realised that this really was part of who I was and had been my entire life.
Why I needed a diagnosis of Autism
The day I got the confirmation from the psychiatrist was life-changing.
Instead of beating myself up about not being able to do the things everyone else did with ease, I accepted that there was a real reason I couldn’t and that it was okay. I stopped putting myself under pressure to act ‘normal’ and stopped forcing myself into situations I knew I would find stressful just because it was what everyone else did. I viewed memories from childhood with fresh eyes and was now able to understand my actions.
It was as though my life was a cog, that people had tried to force into place my entire life. When I got my diagnosis, it was as though the psychiatrist had turned the cog. It now sank neatly into place and began turning in rhythm with the others.
I wasn’t bad or wrong.
I had Asperger’s Syndrome. I was autistic.
You may be surprised to know that I made the decision to be open and honest about my diagnosis with other people. I wanted people to understand that if I said no to social invites, it wasn’t because I didn’t want to, but that I knew I’d find it too difficult. I wanted people to understand that I didn’t mean to appear aggressive when discussing difficult decisions at work. It’s just that I was passionate and I couldn’t always express it properly.
I know I’m extremely lucky to feel I can share my diagnosis with my colleagues. I work in a profession where staff are trained to understand and work with a whole host different needs within the classroom. The support I received from particular colleagues, who I now class as friends, was invaluable.
Then and Now
Five years ago, I was at my lowest point. Now I am in a happy, long-term relationship with a man who astounds me every day with just how patient he can be and how he allows me to be me. I am happy and content in my work and the addition of a dog to our home has made things perfect.
None of this could have happened without a diagnosis.
I have heard others say, ‘Well you’re an adult now, why do you need a diagnosis?”
I needed it because it allowed me to be happy. To be content, To accept who I am and to make peace with it.
Because isn’t that something everyone should have?