Whose Autism is it anyway?

As soon there were suspicions of me and family being on the autistic spectrum I wanted to write about it. I felt there was a story to tell. A story untold until the way I was could be explained. I felt it needed an explanation. I, found it odd. Other people, found it odd. Suddenly it all became clear. I wanted to explain. I wanted to clarify. I wanted to inform and help if I could. It seemed no one really knew much about the autistic spectrum despite there being so much public information out there.

When I was diagnosed I felt tremendous relief. I felt I needed a diagnosis for people to believe me so that they didn't respond 'no, not you.' To be honest all I received now when I tell people is 'oh'. I didn't have the courage to go and speak to other people on the spectrum.

I instinctively knew that others viewed autism differently and have different ways of expressing themselves and different fears and joys. I knew that some people wanted to celebrate the ASD that they or their child has. Others were in pain. They saw their children suffering and they wanted this thing to be gone. They wanted it cured. They had no time for these celebration people. They were at times hostile. I was afraid. Afraid of offending someone with my lack of knowledge so I made sure I knew what I was talking about by completing a year-long course on every aspect of ASD.

Looking for comfort and looking for acceptance. An acceptance which I had never received.  I joined a Facebook group of like-minded individuals. I was silent for a while but witnessed differing opinions. It seemed at times that people were scrambling around, confused, sometimes in the dark about things looking for answers and reassurance from strangers.

On one occasion one lady was corrected for something that she had said. It was about the levels of ASD. Many people jumped on this and the girl felt she had to leave the forum. I explained what  I had learnt about the levels on my year of study.  The girl hadn't said anything that was based on opinion. It was factually accurate. As someone who finds accuracy important, I tried to kindly shed light on what I thought she was trying to say.

The group turned on me. I explained that I wasn't saying I preferred levels but that that was how it was being done at the moment. They told me that I was typical of someone who was diagnosed later in life and that I should ask autistic people what they think. I found this odd as I am autistic.  I could ask myself. The comments hurt me and left the group. I guess it is ironic that a misunderstanding should impact people who have communication difficulties. I thought it was more than that though. I thought it was people not listening, not accepting others and actually being quite mean.

Now there was another divide, between those who have been diagnosed  most of their lives and those who have been in the dark for so long. I have taken on board what was said to me and I try to bear in mind. Unfortunately it silenced me. I didn't write on this blog any more.  I suddenly felt I had nothing to say.

I have now decided that I only ever spoke for me. That is the only person I can speak for. It is worthy of sharing and people can ignore it if they like. I can only speak about me. I can only speak about my autism but after all whose autism is it anyway?