John Doyle - Living With Autism

I watched the documentary on A Current Affair last night about John Doyle and his personal story with Autism.  John spoke emotionally about his sister Jennifer who is Autistic and the difficult life she and their family had while she was growing up.

There were rumours circulating when Jennifer was younger that she suffered from Refrigerator Mum Syndrome that she had been denied love all those years, the same thing Temple Grandins mother was accused of (which of course in both cases was completely untrue!).  Her parents described her as sub-normal, which is what they were told by doctors in the 50s and they worked hard to care for her as best they could while he worked two jobs and she ran the corner store and also cared for her ageing mother.

Jennifer was really strong; she would smash the top off a bottle rather than opening it and the fridge had a leather strap around it to stop her from getting into it and eating everything. The whole familys life had to be organised around her, they couldn't even have visitors as she acted too strange.  John spent a lot of time in the car to read or study and needless to say, he and all of his siblings left home early.

His parents refused all assistance from governments, didn't trust any institutions and John believes that without doubt it ruined their lives.  It sucked a lot of joy out of their lives.  The family spent their whole lives trying to make sure Jennifer didn't destroy the house or hurt herself.

Finally at the age of 11, to the relief of her parents, Jennifer was diagnosed with autism by Dr Vern Barnett who would later become the founder of The Autistic Society of NSW (later Autism Spectrum Australia (Aspect)).  Nowadays Jennifer lives in a care home and she is happy but John believes that life would have been very different for his sister if the services we have available today had been around 50 years ago.

Inspired by his own personal experiences, John is now the Patron of Aspect and his wish is that all people living with autism and their families will have access to timely and effective interventions.  He said, Jen has been good for us, its made us all closer since mum and dad have left us.  They have left us with her!  So we do as best we can and Jen is the glue, the bond that brings us all together.

This interview one of the reasons why I get so mad that people say that autism is over-diagnosed nowadays we are LUCKY to have the knowledge, experience and skills that we do to assess and accurately diagnose our kids from an early age so they can benefit immensely from early intervention.  As tough as it may seem sometimes, knowledge is power and this power is helping us to be the best parents we can be to our special kids.

If you would like to watch the complete interview, you can find it here:

http://aca.ninemsn.com.au/article.aspx?id=9022351