All About Autism

Our Autism Story

It took a long time for us to realise that our son had more than just issues with his vision.  

We genuinely thought his unease with strangers and his dependence on routine was a result of his earlier diagnosis of albinism.  We didn’t realise that his phenomenal memory, constant questioning, inability to cope with change, fixation on books and Pixar movies, constant anxiety and his explosive tantrums were symptons of autism. 

I vividly remember the first time the idea that he had autism was suggested to me.  He had just turned 3 and his family daycare worker, who had previously worked with kids with autism, asked me whether we had ever considered that he may be on the spectrum.  I looked at her, in shock, and quickly denied it. I mean, it was a ridiculous idea, I knew he had special needs but it was due to his vision problems. He couldn’t have a second diagnosis, life couldn’t be that cruel to him.

Soon afterwards, our youngest nephew was diagnosed with Aspergers Syndrome. As I started to understand the challenges our nephew faced, the idea of our son having autism kept gnawing at me, until I could no longer ignore it.

I am afraid that I did keep my head in the sand for some time, grappling with the enormity of what we might be facing. I eventually realised that I had to do something so I educated myself by reading reference books about the disorder. I found with every description of typical autistic behaviour I read, my insides twisted with the recognition that they were also describing my son’s behaviours. I remember sobbing in the middle of Borders one day, knowing deep in my heart, that my son had autism.

Grieving for his ‘lost’ future the second time around was unbelievably painful – more so as I had to face it virtually on my own.  My husband took a long time to accept that our son might have autism and I found myself doing the legwork to get the necessary assessments done to obtain a diagnosis. He eventually accepted the diagnosis (and he is my absolute rock now!) but our separate bouts of grieving meant that it took a long time for both of us to be in the same place – it was a horrible, uncertain, stressful time, I hope to never be in that mental place again.

Two days after my son’s 4th birthday, after having a massive meltdown in the paediatrician’s office, he got a diagnosis of high-functioning autism. We were referred to Autism Spectrum Australia (ASPECT) and by the end of the year we had secured a place in their Hunter School for him. He was educated there for 3 years, finally making a successful transition to a mainstream class in 2012.

In the years since, he’s thrived in a mainstream setting, recently moving to a gifted and talented class at his local high school. We now know that with the right supports, he’ll be able to do pretty much anything!

Check out the resources below for more information on autism.

Autism Resources

Managing Difficult Conversations With Your Child’s School

Hands up if you dread initiating and managing difficult conversations. While we may dread them, they are a necessary part of parenting life, especially when parenting children with a disability and...

How to Rise Above Judgement as a Special Needs Parent

The minute I saw this post in my facebook feed, I knew I had to share it. One of the biggest issues I've experienced over the years (an issue shared by most fellow parents) is the judgement we face...

The Importance of Building Emotional Regulation

Over the last 15 years, we've attended way too many therapy sessions to even begin to count! While I don't know exactly how many sessions we've attended, I do know that building emotional regulation...

APAC 2019 – Lessons & Sessions

As I shared in my last post, I was privileged to be invited to APAC 2019 in Singapore to give a plenary presentation on our positive education journey. I also delivered a workshop to professionals,...

Asia Pacific Autism Conference 2019

I'm in the midst of frantically preparing to fly to Singapore to attend the 2019 Asia Pacific Autism Conference (APAC). Two years ago, I delivered two sessions during APAC 2017 in Sydney. I...

Making the Most of Your NDIS Plan

I recently attended a session presented by my LAC (Local Area Coordinator), focused on how to make the most of NDIS plans. Now, while I thought I had a good grasp on all things NDIS, I actually...

5 Myths About Using Online Platforms to Find Support Workers

For this weeks' "5 Things" post, I welcome Lauren from Careseekers, an online digital platform that links individuals and families to care and support workers. Careseekers is built on the idea that...

The Emotional Labour of Special Needs Parenting

I've been quiet around these parts as I'm developing training for teachers and professionals, to help them improve relationships with parents. As I've been working on course material and delivering...

5 Resources for Parents of Kids with Intellectual Disabilities

For this week’s ‘5 Things’ post, I welcome Sunnyfield, a member-based, not-for-profit charity committed to enriching the lives of people with intellectual disability. Sunnyfield provides...

How Schools Can Work With Parents to Improve the IEP Process

Last week, I addressed teachers and parents at two joint professional development sessions. It was an unique opportunity for parents and teachers to come together, improve their understanding and...