Speaking up

Speaking up is important to me. Since the Batsman's diagnosis I have been all too aware of the impetus to speak up and advocate on his behalf. It has been hard to do it sometimes though because just being there for what the Batsman needs has taken much of my time and energy. Now it seems there is a bit more advocacy to do. There might even be a little more time to do it once he is at school next year.

I recently finished writing a contribution that will be published in the Australian Autism Handbook second edition which is due out in 2013. I was honoured to be asked to write it and proud to speak up. I can't wait to see the book. The first edition of the book sustained me with knowledge and comfort through the period of diagnosis and beyond. It still does. I commend it to you.

I gave a speech at a charity ball a couple of weeks ago. I told the story of the Batsman and us and autism. I told it for him and for us, and I told it so that those who heard it would learn and understand more about autism and what it means for a family who live with it.

Speaking up.
Telling a story.
Removing the mystery.
Saying clearly what is needed.
Asking for help.

So often, many want to help but they just aren't sure of the best way to do it. It's important to speak up and tell people what they can do. Speaking up empowers the speaker and empowers others to act too.

For those of you who are interested in reading it, here is the speech I gave:


"The Batsman was diagnosed with Autism Spectrum Disorder in March 2010 at the age of 3. He is almost six years old now and about to enter the big wide world of mainstream primary school.

The first thing that worried me about the Batsman was his language. He had a few single words at two and a half but he never really had that “explosion” of hundreds of new words that you typically see between the ages of two and three. He was also fascinated by things that spin such as fans, windmills and wheels and would spend lots of time fixated on those objects. He was also very sensitive to sounds and I remember very clearly his fear and distress when we sang Happy Birthday to him on his first and second birthdays. With my own professional background in early childhood education, I knew that these were signs that things were a little different for our boy.

I think I knew from when the Batsman was two and a half that it was most likely autism that was going to be part of our experience. We were very fortunate to find a paediatrician who could see him relatively quickly. She was amazing – sensitive, caring and pragmatic. She remains a “touchstone” for us on our autism road and we see her every six months to review the Batsman's progress. Even with our fabulous doctor, nothing ever really prepares you for “diagnosis day”.  I remember the sensation of having known it was coming but at the same time feeling so shocked. That day will always be with me. His diagnosis came 6 months after the birth of his younger brother so it was a difficult, emotional and sleep deprived time for all of us.

Now when I hear of another family who have received an ASD diagnosis, my heart always hurts. It hurts because I know that is another family desperately searching for ways to help their child, navigating the confusing web of services, therapies and funding. And more than anything, I know there is another family confronted by the question of 'what will my child's life be like?' 

After the Batsman's diagnosis, the question that hung in the air for the first few weeks was “what do we do now?” Like so many parents facing an ASD diagnosis we spent many hours researching treatment and early intervention options. ABA quickly stood out with a base of evidence supporting its positive results for many children. In the end, it was a combination of that evidence, a “gut instinct” that this was the right approach for our boy and finding Learning for Life that helped us choose that path.  

The reality of undertaking an intensive therapy program in our own home was extraordinarily daunting. We commenced an intensive (25 – 30 hours per week) Learning for Life program three months after the Batsman's diagnosis and life became a whirlwind of therapists coming and going every day.  We set up our spare room for the program and I tried to participate in as much of the therapy as I could, but it was so hard to do that sometimes. So often I really just wanted to be “mum” and not take on a therapy role with the Batsman. It was incredibly painful at times to watch him struggle to learn things that lots of kids do easily and I shed many tears during that first year.

Our therapy team have all been amazingly sensitive and supportive, but even with that, the loss of privacy and the demanding schedule of therapy has been very challenging for the whole family. Our younger son, the Bowler, was only a baby when we began our ABA program so his early childhood has been shaped by a household focused on ABA too. For him thankfully, the Batsman's program has largely been a fun and highly social experience. The other great difficulty with intensive ABA is the enormous financial cost. With present government funding models, ABA is out of reach for far too many families. We have had support with the costs but in many ways we have altered our financial future to try to support our son and give him the opportunity to be all he can be.

The Batsman has made wonderful progress during his two and a half years of ABA and I don’t regret a single thing about our choice to undertake this form of early intervention. He is a different little boy, more confident and less overwhelmed by the world around him. When he was first diagnosed, we were uncertain whether he would be able to undertake mainstream education and now we find ourselves readying him to attend local primary school next year. He has learnt so much language, learnt social and play skills and spent two very happy years attending local kinder with one of his therapists. In his ABA program the Batsman has, in essence, learnt how to learn and as his family, we have learnt tools to tackle challenges as they come up. I imagine that the principles of ABA will be part of our lives for many years to come.  

We are so proud of all he has achieved.

Thank you for whatever support you can give Learning for Life tonight and in the months and years ahead. I promise you, your dollars are very, very well spent."