Tuesday, 26 March 2019

The highs and lows about writing about Autism

Woman typing on laptop

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.

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

7 comments:

  1. I think we have the right to try to educate the world to ensure a better path through life for our children x

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  2. Like Steph says, education is everything, I may not have autistic kids myself but I like to think I have an understanding and respect for parents that do from reading blogs like yours. #KCACOLS

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  3. *big hugs* Thanks so much for linking up at #KCACOLS. Hope you come back again next time xxx

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  4. I felt a need to write down all the information I learn about autism and share it. I often found the same questions coming up from parents and always felt they needed a more in depth answer and that is what I blog for. It's hard to put your true feelings out there when you know people will judge you for it. But Sharing those feelings is so important and helps so many people. Also I loved the radio show xx

    #spectrumsunday

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  5. Educating others is so important. You aren't just speaking to people that have children with autism. This is helpful for educators that work with children with autism and people in general so that they can be a little more understand and kind. #KCACOLS

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  6. You write so beautifully and articulately about the subject. Sadly we live in a world where there is always someone waiting to criticise us and these people will never be happy. Your blog is a fountain of information and I think you're doing amazingly well. My niece has recently been diagnosed at 2 years old, and your blog helps me a lot to understand autism and gives me ideas on how to better interact with her and I thank you for that. Thanks so much for linking up at #KCACOLS. Hope you come back again next time xxx

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  7. I think your blog is a great resource for other parents who feel maybe they can't turn anywhere else, or need to know they are not alone. How (and if) you choose to share your family's story is something only you can decide on but someone will always have an issue either way.#kcacols

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I read all your comments and appreciate you sharing your thoughts with me and our readers. I welcome any feedback on my posts and you can always contact me directly. Thank you.

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