What is it like being autistic?

I most recently received my formal diagnosis of being autistic and a PDAer – autism’s subtype Pathological Demand Avoidance at the age of 45. I have, therefore, spent my entire life struggling and masking the difficulties I have, trying to appear ” normal” but inside been crying out for answers.

I can only give my perspective of being autistic however I hope that much of it will resonate with my readers or to those who readers support or know.

I am not fantastic at writing, and so even this blog is a challenge, as I am not great at explaining how I feel, ironic coming from a life coach huh, but I will give it my best shot.

So, what is it like being autistic? For me, its like I am totally disconnected to other people. All of my life I have tried to be like other people, mirrored and copied what I thought was the right behaviour. I of course had no idea I was doing this until now.

I have a fantastic memory and can recall as far back as aged 3 and remember then having really deep thoughts about life. Thoughts that kids really shouldn’t have. I should have been carefree and happy but I spent most of my childhood frustrated, anxious and angry, not getting what I wanted or being understood. I must have given my parents a real hard time, in fact they did used to say I fussed far too much and was so hyper sensitive. I do not speak to them now and discovered via my diagnosis that my parents maybe autistic when the genetic link was discussed.

Looking back I can see how vulnerable I was and lacked understanding of intentions of others and so I ended up at the age of just 17 becoming pregnant. I was totally shocked and my body reacted by giving me a hard time during my pregnancy – my senses went into over drive and I felt sick at the smell of almost everything. I have always been able to smell everything and have even said so many times my sense of smell is like a dog, but this was on another level with the pregnancy hormones raging. I had not long started my first real job as a self-employed greeting card artist, which was so demanding as we had deadlines to meet, and so then discovering being pregnant and trying to work began to take its toll. I was also in a abusive relationship with further demands, and for someone unknowingly having Pathological Demand Avoidance, this was a sure recipe for disaster.

Me at aged 19 with my daughter

When my daughter was around 18 months I suffered with a complete break down. I couldn’t eat and went down to just 7 stone – I am 5ft 6 inches so not good, I couldn’t sleep – every time I tried I kept jumping as I could not relax and let go, I did not wash, and could barely get up out of bed and care for my daughter. I was diagnosed as severely clinically depressed which they put down to post natal. When I look back now I can understand this time period more as a complete autistic shut down. I have always had daily challenges such as brushing my hair and teeth as it hurts, and tire when washing but this was so different, I literally could not do anything. At this point sectioning me had been discussed.

Through out my life I have been diagnosed with an anxiety disorder – GAD generalised anxiety disorder and given medication and all kinds of therapies however I had not been able to understand them, and take on board what they required me to do to feel better – I guess that is because I think literally and so not able to visualise something unless its from an actual memory which was very frustrating as I so wanted to be able to just fix my brain some how.

In my thirties I decided that I would study as I wanted to gain an understanding of the brain and try and help myself by learning therapeutic techniques. And so I studied for around 7 years taking many courses, gaining foundation degrees. I was not able to study when I was younger, I hated school and spent all of my school life hiding away in the medical room, trying to get sent home, or just pretending to be ill to avoid having to deal with other kids .Therefore I did not learn much, hence becoming an artist as I was too anxious to process any information as it just would not stick, maybe being that bit older helped me to be able to learn although I did find it challenging I was determined to do it. Learning gave me some confidence as I began to feel like I was achieving something – I had a purpose and an aim.

Here’s me again, trying to pose for a professional photo – for my Life Coaching website

I was proud of myself for gaining the qualifications I have, but it all seemed to be leading to nowhere as I knew what was required to be able to go off and make a career from what I had learnt, and I just could not do it with the over whelming social anxiety and the demands from others and not knowing what was expected of me.

In future blogs I will go into more detail about areas of my life which relate to autism and PDA such as my sensory issues, social anxiety, eating disorder, repetitive behaviours and OCD. But for now this is a brief over view of how being autistic is for me as there is so much I have to share.

For me, its not all doom and gloom as there are many parts about being autistic that I feel are an advantage to the norm. For example, my memory. When I set up my private practice (at home) and started to see clients, I was able to remember every single detail of conversations meaning that when I saw them again we could literally just pick up from where we had left of. This, I found, was quite rare in the therapy world as I had spent so many times having to go over my issues with therapists each time we met. I am also so sensitive to others emotions that I can truly feel what they are feeling – yes contrary to what people say about autistics we do feel even more then others, hence why eye contact can be too painful and too intense.

I also am able to remember a face when I have seen them. I took a test for the police online and have been described as a super recogniser – so I do have many qualities that I am really trying to home in on now that I know I am autistic.

I am really looking forward to sharing more with my readers and will round this up now, as once I get started I could literally just go on and on!

Thank you for reading.

3 responses to “What is it like being autistic?”

  1. Well done on your first post darling, I really enjoyed reading. Wishing you every success with this. I can’t wait for you to be able to help and support others too with your work by gaining an understanding of autism and other conditions. X


  2. Fantastic and inspiring read. Thank you for posting. I have worked with many diagnosed children in school and nursry settings. All insight is good but I have learnt so much from you in one read than a lot of courses I attended. Thank you
    Please keep posting


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