21 years on: reflecting on an Autism diagnosis as it comes of age

Penny Robinson

Monday 9th July 2018 marked 21 years since the appointment of testing (from 3 – 5 pm in the afternoon) that resulted in my Autism diagnosis (“mild Aspergers disorder” was the terminology used in the diagnostic report) in Year 9, at the age of 14.5 years.  To celebrate my diagnosis’ “coming of age”, I made honey joys to share with my colleagues at work!

Some people think that I was diagnosed “late”, at the age of 14.  I know plenty of people – especially women – who were “missed” in childhood and diagnosed as adults.  It’s also important to remember that “Aspergers syndrome” got added to the DSM IV in 1994 – 3 years before my diagnosis.  Now, the diagnostic criteria has changed again to “Autism Spectrum Disorder” with Levels 1, 2 & 3.

When I was growing up, I knew that I was “different” to other kids – but I didn’t know how.  After I got the diagnosis, and the school counsellor went through the characteristics with me, I thought “that’s me” to lots of them.  I wasn’t until the end of Semester 1 of first year uni (almost 5 years after my diagnosis), that I finally met someone else with “Aspergers”, like me.

I think it would have been useful to know there were other kids like me, especially as a teenager when I was getting bullied.  That’s why I’m an Ambassador for The I CAN Network, Yellow Ladybugs and Aspergers Victoria – so others growing up now know that there are other people “like them”.

I went through university (Bachelor/Honours/Masters) while my diagnosis was primary school aged.  When I started working at Monash University in April 2010, my diagnosis was a “tween” – I celebrated my diagnosis’ 13th birthday after I’d been there a few months.  Quite apt that my diagnosis became a teenager, as I was finding my way in the world of full-time work.

Then, in 2015, my diagnosis became an adult (18 years). That was also the year of my teaching commitments increasing, getting my first invitation to speak at a conference – and “hoodie girl” being born at that (Asia Pacific Autism Conference in Brisbane).  My sensitivity to light and sound also increased as I got busier – but so did my confidence to wear a cap when needed. Now in 2018, I’m part of the Autism CRC Future Leaders Program and becoming more known in the Autistic advocacy space, and my diagnosis “comes of age” and turns 21.  Again, I find that quite fitting.

As for telling others about my diagnosis – this, too, has changed over time.  Initially, I told people on a need-to-know basis.  Then 10 years ago (in August 2008), I mentioned it on the Bicycle Victoria forum, which was well received. In Oct 2010, I heard Tony Attwood talk about “Girls and Women with AS” in Sydney; there was a table of books there, and I regretted not buying “All Cats have Aspergers Syndrome”. My Gma gave me this for my birthday. It lived in my bag for 6 months, and was a great disclosure tool.

Towards the end of 2013, I wrote about the I CAN Network starting up and a talk I’d given for Aspergers Victoria in the work eNews, so it was common knowledge.  At the Victorian Autism Conference 4 years ago, I was asked if I could be interviewed by The Age and photographed. I immediately said yes.  Now, if you google my name, this article and other Autism advocacy stuff comes up and I’m a proud Autistic advocate.  I’ve got the confidence to be myself – and I’m recognised at work for my cap-wearing and live-tweeting in seminars!

I’d like to thank everyone who’s helped me and given me the confidence to be myself throughout my diagnosis journey – including my parents, family, friends and colleagues.  But most importantly, I need to thank my Gma, Joyce Fuller, who passed away in April.  To quote Josh Gorban: “You’ve raised me up to more than I can be.”

Penny Robinson

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