An Undiagnosed Autistic Life

An Undiagnosed Autistic Life

A childhood full of confusion and fear. Loving family, but so often misunderstood.

I tried to follow, to mimic, to make myself small and barely noticeable.

But I was “too shy”; “too quiet”; “too sensitive”. Always “too” something, never quite right.

A difficult teenager. Still the confusion and fear, but now also anger and self-loathing.

Obsessions: punk music and revolutionary politics.

Out of step with my peers. “Weird”; “sullen”; “stuck-up”; “boring”.

A bright student, but “needs to make more effort to contribute to class discussions”. It wasn’t a lack of effort. Discussions move too quickly, too many voices, too much information, overloaded, overwhelmed, desperately holding myself together. Apparently, I was just “lazy”. “Must try harder”.

As an adult, employment has been the biggest among many struggles.

Work defines you, gives you worth, means you are responsible, self-sufficient, “normal”.

So why did I find it so difficult? So draining? So exhausting? Why have I spent years bouncing between full-time, part-time, and sick leave? Feeling like a failure?

Work is what adult humans do, why did I struggle so much with something so ordinary?

Now, in my 40s, I start to understand my own neurological differences.

Why do I struggle?

  • Because keeping up with the flow of a conversation is hard work for me, my brain processes information slower than most people’s.
  • Because background noises like the radio, or other people talking, are not ‘background’ for me, they are loud and intrusive, they disrupt my concentration.
  • Because smiling and chatting are not things that come naturally to me, when I’m focused on something I forget, then I’m mortified when people assume I’m being deliberately rude. But it’s too late by the time they’ve made that assumption.
  • Because last minute changes and sudden interruptions are hugely stressful to me, sending my anxiety levels through the roof.
  • Because not being able to ‘read’ people, therefore not always picking up the cues when people want something from me, makes me feel constantly on edge.
  • Because I’m aware that I behave differently from most people, I know that many people find me odd and are put off by this. I don’t ‘fit in’ and it can feel lonely.

I work part-time at the moment. Every day as I prepare to go to work, I have to psyche myself up and tell myself:

“You can do this. You are capable. You are not stupid. It doesn’t matter what other people think of you. It doesn’t matter if you sometimes make mistakes. You are doing your best and that is good enough.”

I know I will always struggle. My awareness of being autistic is helpful as I slowly adjust to being kinder to myself. But I still have to deal with the world, and function in the world of work.

Greater understanding of autism more generally, and more compassion towards those of us who struggle with day-to-day social norms, this is what I hope for.

By Kara

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My Lived Experience

Asking me to talk about ‘my experience of autism’ is as odd as being asked what my experience is of having blue eyes.

Masking

Masking has become much more talked about as understanding of autism grows. But what is it, why do we do it, and what is the impact?

An Undiagnosed Autistic Life

A childhood full of confusion and fear. Loving family, but so often misunderstood.

What knowing I am autistic means to me

After 39 and a half years of not knowing what made me tick, why I communicated and behaved the way I did, I finally got confirmation that I am autistic.

My Autistic Journey

For years I have struggled to comfortably fit in, understand people, and be myself.

Growing Up Undiagnosed

I was diagnosed as autistic eleven years ago at age 21. I had spent my entire life feeling different, not quite fitting in, but not knowing why.

Trusting What Remains

I struggle to trust my processing of this world, but I’ve found other feelings to rely on.