Sunday, 7 December 2014

The other autism mums

I have been known to point out that a lot of mainstream discussion and media coverage of autism related issues concentrates on the parents of children with ASD rather than we who have the condition ourselves.  But I think there's a group who gets ignored even more.

Not my family: as if we'd all be making eye contact
They're people like my Mum and Dad, Nanna and Pop: the parents of Australia's missing generations undiagnosed, misdiagnosed and late-diagnosed adults with ASD.  They're the "autism mums" whose children are now in their 40s or 50s or 60s or beyond.

They care about their kids as passionately as today's parents.  They faced the same fights to get their kids understanding, respect, a useful education and a place in the world. But they did it all without a diagnosis, without understanding, without the law on their side, without services or resources or respite or backup.  And without any sort of acknowledgement.

They did it while facing blame, prejudice, and discrimination on a scale that we in the second decade of the 21st century can barely imagine.  They did it while being told they were bad parents, "refrigerator mothers", poor disciplinarians.  They did it while being told their children were evil, soft, bad, sinful, worthless, should abandoned in the scrub or put away and forgotten about.

For today's families, getting a diagnosis is usually a turning point in their story.  Things start to make sense.  It's not your fault, he's not stupid, she's not wicked.  It's a neurodevelopmental disability, not a failure or flaw of parent or child.  With luck, it's the point at which services and understanding and a community of people in the same situation start to open up.

But for generations past, that never happened.  My grandparents never knew why their eldest son, a beautiful, intelligent, gentle man who could have gone on to greatness had he been born in Melbourne in 1992 instead of Hughenden in 1932, struggled so much.  The meltdowns, the seizures, the bullying and violence and abuse and isolation he suffered, the waste of that vast intellect and beautiful heart.  They never got that turning point.  They went to their graves feeling they'd failed their child.  Knowing there was something weird or wrong or broken about either their baby or themselves, but never knowing what.  Never getting an answer.

In the aftermath of my diagnosis, nobody reached out to support or connect with my parents.  Our situation - as a family with a member diagnosed in adulthood - is hardly unusual, so it strikes me that this is a gap in the system that needs filling.  I think it's an area where we as the spectrum community in general, and the various parent-run, parent-focussed lobby and support groups in particular, could do better.