Friday, March 1, 2019

My Autism Journey

I must have been 39 – 40 when I watched a documentary about autism. It was about children and young people but I was still able to see myself in them. I couldn’t believe it, a perfect fit. This was the beginning of thinking I may be on the autistic spectrum and not just an extremely shy loner. I spent the next few days thinking of nothing else and working it all out in my head. The more I did the more convinced I became.

When I next saw a friend I asked her to look it up as at the time I was bedbound with severe ME and could do nothing for myself. I told her about the programme and my thoughts on it since so that she was interested in finding out anything she could.

When I next saw her she was armed with literature, including an online test she’d come across. We decided to do the test. She read out the questions and I gave the answers. She totted up the score afterwards and sure enough I did score in the category that meant I was probably autistic and should have a proper assessment.

The next step was speaking to my doctor. She knew me well as I was obviously very ill and saw her regularly. At first she said no, she hadn’t seen any signs but when I told her about the test she became interested. I told her I saw someone as a teenager but didn’t know if a diagnosis was ever made. She agreed to look through my medical records. She became interested in what she found. I had seen someone but no diagnosis was ever made but a description of me was given which was of someone on the spectrum. Seeing this she looked all through my notes and found concerns dating back to when I was 5 that I was making no attempt to mix with other children. I was supposed to see someone then but for some reason it never happened. We don’t know why and my dad couldn’t enlighten me either as he couldn’t remember. My doctor found concerns littered throughout my notes right into adulthood. She was now convinced I was autistic, but she didn’t know how to go about getting an official assessment as an adult. The next few years went by with only a self diagnosis. I still longed to have it officially confirmed but  it seemed impossible.

I came into contact with someone who, when I voiced the possibility of autism said there was an adult diagnostic service in Buckinghamshire in the UK, the area I lived. I spoke again to my doctor and asked for a referral which she was happy to make. I had to chase it up when nothing appeared to happen. It hadn’t been done because she didn’t know where to send it, so I told her the address which was fine. This was the beginning of what seemed like jumping through hoops to get what I should have had as a young child. I had to answer questions over the phone to see if I was entitled to an assessment. I got passed that obstacle and then my doctor had to fill in a form which would help them decide if I needed an assessment as well. Again I had to chase it up as it wasn’t being done. I successfully got through that and now the wait for an appointment.

The day of the assessment arrived. I had to go by taxi some distance away to another town. Quite expensive by taxi but the only option as I couldn’t find a friend available to take me. I got through the assessment. I felt it went fairly well although I had no idea what he would have been looking for. I then learned I would have to wait several weeks for a follow up appointment to get the results. This time I was able to get a friend to take me. I was very apprehensive in case I didn’t get the longed for diagnosis. I turned up and straight away was told I am on the autistic spectrum. I was given the written copy of his findings and made sense of it in the light of my answers.

After the appointment when I went outside to meet my friend I didn’t need to tell her the outcome as she saw it on my face, a big smile. I was so relieved to have it officially confirmed that I am indeed autistic. I was 45 years old.

I felt vindicated, able to make sense of my life now and able to see, looking back, how badly misunderstood I had been my entire life. I remembered  back to being told when I was a teenager by the school head that I didn’t want friends and it was my fault I was being bullied. As an adult I had memories of my church trying to insist I talk to people and get involved. I had no idea how. This led to my being disowned by the church when I became too ill to get there.

These are only a couple of examples. Would it have made any difference if I had been diagnosed at an early age? I honestly can’t say. At that time autism wasn’t recognised in the way that it is today. They only recognised severe autism not the full spectrum. Even if I had a diagnosis would there have been appropriate support available to help me cope with the social side of school. Again it’s debatable. The chances are that I would have still faced all the same problems and a lack of support as a result of the lack of understanding of autism at that time.

I now know and understand myself better. I recognise the challenges I face in everyday life from asking in a supermarket where something is to trying to cope with small talk with people at church. If I stand by myself or sit alone it doesn’t bother me so much as I know why and have learned to accept the way I am. It’s ok to be me. It’s ok to be different. In spite of these hurdles that I experience on a day to day basis I have managed to make friends at church and also am involved with activities as part of the church.

I am an author of 8 books so far. I have to be very aware of my dialogue as that is a difficult area for me. A friend reading a couple of chapters of my first novel commented that it was too formal. She said how people usually speak and how I needed to alter it to make it more realistic. Since then I think my dialogue has improved and now I automatically write it better on the first draft. When editing I still catch the odd times when I’ve reverted back to the formal style and change it. I love to write. I am achieving my life long dream of being an author.

For me having a diagnosis has been liberating. Yes, it still frustrates and upsets me that I had to experience so much misunderstanding over the years. Autism doesn’t have to hold you back. Follow your dreams as I have and see how far you can grow as a person.

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