My Autism Story: Too Much World

If I had asked you, four years ago, to imagine someone on the autism spectrum, I doubt you would have imagined me. I wouldn’t even have imagined myself. You cannot see autism – especially not mine. Autism is a neurodevelopmental difference in the way the brain functions. You can’t see my brain functioning, but it affects nearly everything about me to differing degrees. My personality, my experience of the world, my memory, my development, the way I communicate, how I think, even how I move.

I’m going to tell you about the first-time autism was ever mentioned to me, as a potential diagnosis. My friend was at the appointment with me. He was supporting me in a session with the psychiatrist at mental health services. He was my voice on this difficult occasion, my second pair of ears. After trawling through medical notes and interviewing me for two hours I am diagnosed with depression and anxiety, OCD, Bipolar Disorder, an “unspecified trauma disorder” and “potential autism spectrum disorder.” To me those words were like enormous suitcases. They were so heavy. But nobody was helping me open and unpack them. The psychiatrist was thorough and clever. His questions were different and probing, and they strayed from the standard mental health questionnaires. He was assessing my use and understanding of language, and body language, but I had no idea why.

I can’t have autism.

I can barely bring myself to say the word.

I can’t have autism. I am a girl, a woman, a teacher. I am 30. I don’t want autism. How will I ever be able to tell people that I have autism?

The psychiatrist told me to do some research about autism in girls while I wait for the referrals, so, when we got back to my friend’s house, we looked online. I found Samantha Craft’s checklist for Asperger’s in females The checklist was separated into ten sections. The sections focussed on deep thinking, innocence, escape and friendship, co-morbid attributes, social interaction, being alone, sensitivity, sense of self, confusion, words, numbers and patterns and executive functioning. My friend told me to read out all of the attributes, and that he would say “yes” or “no” depending on if it applied to me. We made cups of tea and I started to read the list, keeping in mind that this is a springboard list, not official diagnostic criteria. Something changed in my friend’s face, like it always does when he has figured something out.

“Nearly everyone I know can relate to these attributes,” I said.

We arrive at the section called co-morbid conditions. This time I am okay about relating to so much of the list. The accompanying diagnoses I had received earlier today may not be separate suitcases to be carried but included beneath the ‘umbrella’ of autism. Somehow that feels more manageable. But I was now falling through the net with the two different services. It’s a familiar story. 

My autism assessment kept being pushed back by six months at a time, and the community mental health team kept cancelling my care. They said they couldn’t support me with mental health until I had the results of the autism assessment, but I needed them. I accepted their words – as anyone with a poorly brain might – by concluding that I just wasn’t important enough. 

I was privately diagnosed with autism spectrum disorder in august 2018, with the support of my parents. The diagnosis did not suddenly change my circumstances and make me better, but so much of my life suddenly made sense. My strange and exhausting intensity in social situations. My weird obsessions that never go away. My failed attempts at friendships. My shy awkwardness. My tendency to absorb other peoples’ emotions as my own. The peculiar behaviour of my senses. The way my brain hears and interprets other peoples’ words and intentions. My tendency to panic, to punish myself, and remain non-functional, in secret, for days afterwards. All of these things, which I’d always put down to ‘badness’ – they were just traits of autism.

But the autism spectrum suddenly seemed so lonely. And everyone around me seemed vibrant, natural, open, clever, and correct. All the things that I felt autism was not. I took the shameful assessment results, I folded them, and I placed them in a box under the bed. I promised myself that I would never, ever talk about autism to anyone.

There are many stereotypes about autism that mean that people who don’t fit the stereotypes slip through the net. We aren’t Rain Man; we aren’t Einstein and we aren’t in residential care or special education because of higher support needs or a co-existing learning disability. You might assume that I have ‘mild’ autism but that’s only because you experience me mildly. My autism is quiet and hidden, and I work hard to keep it quiet, keep up and fit in, but I don’t experience it mildly.

To the world, my brain is disabled. But it isn’t disabled from functioning – it is just disabled from functioning in the way society expects it to. The more I’ve learned about it, the more I’ve realised that it doesn’t have to be like this. Autism comes with many, many challenges, but it also comes with so many individual, creative and unique strengths. My autism makes me insanely passionate about the things, and the people, I care about, and it makes me honest enough to communicate what is real and what is right without social boundaries.

I made several attempts to return to full time work as a primary school teacher since becoming ill four years ago. Teaching is my special interest. I’ve still not fully accomplished a full return to work yet, but I am working hard as a teaching assistant, and just about balancing my desire to work and live independently with my complicated health and appointments. I am proud of this. Only 16% of autistic adults are in full time work and I’m determined to be one of them.

On one of my attempts to return to work there was a girl, sitting on the carpet in front of me, sorting toy farm animals into lines. I recognised things inside of her, that are inside of me too. Later I found out that she had received her diagnosis aged two. I remember being overwhelmed at the idea of her future. This tiny child that I don’t know yet, having to go out and face a world that doesn’t accommodate her – that treats her like she is of little use. She looked at me and gave me a funny little smile and I knew that, as she aged, it was only going to get harder for her. The gap between her and her peer group would grow and grow and grow. What is she going to do if nobody stands up for her?

I didn’t choose this, but I have knowledge now, and can’t help but feel a responsibility to pave the roads that these children will walk on. The roads will be bumpy at first, but, when they are older, the children can help me to smooth them. Until one day, there will be children born that never knew that the road was bumpy in the first place.

In that moment I decided. I am taking the papers out of the box from beneath the bed and I am going to find someone in the world who will read them with me and help me to understand what they mean. My friends helped me to find that person at The Red Lipstick Foundation who now works with me through Autism Hampshire. This isn’t about me at all. This is about learning through therapy, and making progress, so that I can help all the others. That is the thought that sparked a determination inside me, that I really thought had extinguished forever. 

I started to write little notes to take to appointments to take the pressure off talking – which is something I find impossible to do at these sessions. Quickly, I learn I can communicate better by writing and by drawing things. I see – in the eyes of the people I am communicating to – relief, that they are starting to understand me. The notes, lists, and drawings I was making, to help me communicate in appointments, were also starting to help me with my own understanding of autism and how it interacts with bereavement and mental health disorders. That progressed to me writing a few blogs to share online. To my surprise, many of my friends and family were interacting with my blogs. They were even praising me for it. They changed the way I thought about myself. They started to take the shame away from my autism and made me feel like it was ok to be honest, about who I actually am, for the first time.

The confidence I have in my book, Too Much World, has been given to me by my family, my friends, my reader. If it weren’t for the support I have felt from these amazing people, autism would still just be one big, heavy suitcase to carry around, in the hopes that no-one would ever know.

2 thoughts on “My Autism Story: Too Much World

  1. Clare, Autism may be a word that most of us still do not fully understand. However, you have taken it and shaken it and offered clear written images of the condition and this does help us ‘non-auties’ to comprehend. It is inspiring to see that, with your clear insight and deep compassion, you have taken the ‘suitcase’ and used it as a tool to help pave the way for the young ones; and perhaps, in the future, to help mental health in general. Your enthusiasm and tenacity have remained strong – long may that be so! I do hope you continue to get all the support you need to help you progress and succeed in your endeavours. Look forward to singing with you again soon, John ☺ (Knowler)

    Liked by 3 people

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