Being Autistic: the challenge of explaining and understanding how you feel

I got my autism diagnosis in my early 40’s. Prior to that I had been an autism specialist teacher for many years. You would think that made me an expert in my own autism wouldn’t you? Well nope, it didn’t.

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This problem really only dawned on me like a crashing realization this week. Now it feels like someone has turned a light on. All those years I was using words that others used, copying descriptions of feelings without really knowing what they really and truly meant. How the heck did I reach the age of 50 without realizing this?

The background to my diagnosis

The crisis point really came when I stopped teaching. I had spent many years in a career with very clear rules and boundaries. Suddenly I had none. This did not immediately dawn on me as the problem, till later.

I began to find EVERYTHING hard. I was setting up a fitness business and this was an area I was also an expert in. So why was this all so hard? I was running into relationship issues with the staff I had employed, relationship issues with the customers, all of which were causing conflict and making me feel very stressed. I could not understand why I was finding this all so difficult.

Then I had a think about it. ASD was something I had thought about on and off over the years but had always disregarded it. I was back visiting this avenue again looking for answers as to why I was struggling so much. With the help of my father, I paid for a private ASD assessment. Bingo, I had the answer. This did not instantly make everything ok for me, but it certainly explained an awful lot. Like a light bulb moment. It has, however taken me many years to come to terms with and it is only relatively recently that I have started to talk about it more openly.

What exactly happened this week?

I see clinical psychologist regularly in relation to my PTSD and constant pain that I deal with related to the amputation. I have recently transferred to a new psychologist and this week was my second appointment with them.

Also in the past week I received a very upsetting email related to my amputation and ongoing case around that.

When I opened and read that email, the emotions I felt certainly were overwhelming and I struggled to keep control. When the psychologist asked me about this, I became very upset. I recognized that the email could well have been a major trigger for my PTSD. But I had little more understanding of it than that. So I described it as a melt down. A recognizable term that I have heard others using.

The psychologist asked me to describe how that felt for me. Here is where I really came to a brick wall. I just did not know how to articulate that. I tried my best, then they elaborated on it and described how other people have explained it to them.

It was at that point that I realized that the reaction I had had was a full. Blown PTSD trigger / episode / whatever you want to call it.

Why is this a problem for autistic people?

I have spent a significant part of my life simply thinking how I feel is just normal. But it isn’t. I can now see why so many autistic people would be diagnosed with depression (a well known statistic)

For me, emotions are very much black and white. Much like how I see the rest of the world in other aspects.

Examples of emotions I understand

• Love – hate (I struggle to recognize anything in between these two)
• Fear / scared
• Sadness
• Happiness
• Anger

I really struggle to recognize or understand any off the others. In fact I had to ask google for a list of emotions so I could understand and remember what they all were.

Example of an emotion I don’t understand

Anxiety

This is used a lot when talking about depression and PTSD, but I really don’t understand what this emotion means and cannot relate it to how I am feeling, although I expect I do have a significant amount of it!

The subtleties of language

I get what the meaning of many of the other subtle variations of emotions are but I much prefer to use the black and white descriptions, they make a lot more sense to me.

Another term that is used a lot that always trips me up, is tightness. This term I mean in relation to muscles, when I ask clients to explain the issues they want me to treat. Now, for me, a muscle is sore, or it isn’t. That, quite simply, is the end of it. But customers often describe muscles as tight. The word ‘tight’ has a totally different meaning to me (stiff, difficult to move, NOT sore).

It often feels like being a foreign student. I am constantly translating the words others use into words that actually have meaning to me, in order to be able to understand the world around me.

Autism processing delay

This is exactly why it often feels like there is a pregnant pause in a conversation when talking to me (or any other autistic person). It takes me a moment longer than you to

1. Process what has been said
2. Work out the meaning of that
3. Work out an appropriate response
4. Put that into words.

Such is life when you are autistic.

What I would like from you as the reader

I would love for you to leave a comment at the end of this article if you are reading it, explaining in your own words, what anxiety means / feels like for you. If I get enough of these responses perhaps I can use them all to work out a meaning that I understand for myself.

Thank you 😊