The highs and lows about writing about Autism

Both of my older children were diagnosed with autism before they were four years old.  We weren’t surprised by either diagnosis.

Anthony was a quiet boy who never really seem to pick things up unless you specifically taught him how to do it - things that came naturally to the children didn’t come naturally to Anthony. David found complete joy in his life as a baby but also complete despair. When he wasn’t talking by the time he was three years old (I mean he didn't say any words at all or attempt to say any) we were pretty sure he was autistic too.

With two autistic kids I soon learned a lot. I often find myself the person referred to when parents were worried about their kids development or when people want to know about how to get their kids extra support at school.

One day I was in the playground with David and we had a breakthrough moment where he for the first time ever was able to interact with another child. I was so excited I wanted to write it down. I went home and googled 'write a blog' and within an hour I’d written my first blog post about my autistic son.

With all the questions I was getting from other parents blog also became a depository for the information I gathered.  It became part diary for information part support mechanism, maybe even part therapy for me.

But writing a blog about my autistic kids has both highs and lows and as I was talking about it with Anna Kennedy on All About Autism and Women’s Radio I thought I’d share them with you.

I’ve beamed with absolute joy when I’ve written a post about how my son accepted his diagnosis. I’ve had tears pouring down my face tapping onto the keys as I’ve written about my son's meltdown. I’ve stood shaking at the computer before pressing publish because I don’t know what people think about what I’ve written.

Writing about something soo personal not just to us but to soo many people can be challenging. There are quite a few debates out there in the parenting and autism blogging world. Should parents of autistic or disabled children write at all about their kids? Do they have the right to discuss them with the world?  How can a parent speak for an autistic child when they aren’t autistic? Should we be saying person with autism or autistic person? Is it fair to talk about feeling the loss of the child thought you might have?

Although writing about autistic and neurotypical family and how we see the world is a therapy for me it’s not really why I started writing. I really felt the need to support my children in every way that I could and part of that was about raising awareness about what it was like for them.

This often means reliving whatever I’m writing about as I’m writing it. It's not always easy to write about my autistic kids, but I think it's important that I do. It may not be what people want to read.  However, as we approach Autism Awareness day, week and month, I hope that ultimately it may support my kids in their future by creating the acceptance they need and help others along the way.

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If you are interested in hearing more about blogging about Autism, listen to 'All About Autism' with Anna Kennedy on Women's Radio Station with myself and Dennis Relojo-Howell from www.psychreg.org

If you like radio then I talk more about EHCP Transfers and special educational needs in general on this interview on Wandsworth Radio - please get in touch with me if you have any questions and I'll help where I can.