Saturday, 7 May 2016

A bitter mother

I don't know about anyone else but I am delighted April is over. I am so fed up of awareness month and everything that came with it. I find it very difficult to spread awareness about my sons autism when really it frightens them. How can I expect acceptance when I barely accept it?
The entire month of April I seen so many stories of positivity and success, and don't get me wrong that's great, but I don't think I seen one story of the hard side of autism. I felt like the tough end of it was being shoved under the carpet. I know, I sound bitter and I can feel myself becoming that way but the entire month of April was stories of how we should celebrate his autism, embrace it even but I know I will never be able to feel that way. I hate it, I hate what its doing to him, to me, to his future.
How can a parent celebrate smearing, trying to help a non-verbal child when they cant tell them they're in pain, self harm, and every other daily struggle that makes their child's life so much more difficult. Where's that story? 

During April I attended a conference by AsIam and I have to say I enjoyed every minute of it. It was run so well and it had talks running all day on different topics as well as speakers who were absolutely fantastic.  But as I went through the day I felt nothing that was being talked about related in anyway to our daily version of autism. I sat close to tears when they're youth group gave speeches and all I could feel was envy. A group for young adults on the spectrum, they spoke so well of their struggles when it came to autism, it was really inspirational but even as a group specifically for autism, my son would never manage to join. I cried wishing that was the autism my son had. I was so proud for that girl, and I don't even know her but I was also envious. I was ashamed of how I felt.

You meet so many people and hear so many stories of high functioning autism or aspergers and it makes me wonder how its the same diagnosis as my son. Surely the spectrum is too broad? How can you even compare?  I even questioned it with his psychiatrist. I thought he couldn't possibly have autism, I wish that's what he had. He has to be bi-polar or worse. But its autism he has.

He was 11 in December. And since Christmas we have already had meetings where residential living has come up. Sleep has always been an issue but he has now taken to not going asleep at all. Getting aggressive about 3am until he falls asleep about 6am from exhaustion. When I leave the room I have to take my four year old me. He gets so stressed and anxious about something he cant even understand he tries to harm himself. And when I stop him, I get hurt, or his dad does.
I keep on telling myself its hormones, its puberty and I'm hoping a lot of it is but he's 11! We're only at the beginning. Its terrifying.


  1. A brave post. We're not in that club either. We have our good stories and celebrate them but we don't fit in the mainstream or the asd world particularly well. It's hard to be on the outside looking in. And celebrating autism? Accepting it? Give me a cure any day of the week. We get plenty of sleep. We get very little aggression. You're doing a great job.

  2. I know I have a son with aspergers, but he too seems a long way away from the confident young people I saw at the conference xx