Last night on Australian commercial television a program called “Sunday” aired that addressed autism, ABA and Early Intervention. I watched it and then ‘checked in’ with social media to see how it was being received. Whew! Controversy Central. And that’s the way it often is with autism. So many experiences. So many stories. So many points of view. So much passion. It must be hard for the general public to get a clear read on what we in the (rather large and ever-expanding) autism community want them to know.
Here’s just a snippet of what is out there in blogs, articles, books, research and TV shows. Try getting your heads around this folks…
There is the ‘Autism is a Tragedy’ point of view versus the ‘Autism Rocks/Sparkles/Is My Superpower’ point of view. I get how people could arrive at either one of these points of view.
Then there is the ‘If there was a Cure for autism I would not give it to my child’ point of view versus the ‘If there was a Cure for autism I could give it to my child in a heartbeat’. Get it. Get both.
The ‘Cure’ view point leads to the Cause view point which leads to the diet, chemicals, pollution, vaccinations, antibiotics, maternal stress, parental age and just about every other thing on planet earth as a possible CAUSE of autism.
I get why autistic people and parents of older ASD children are tired of hearing about the latest Cause of autism and quite frankly maybe just don’t care.
Let’s take the two ‘biggies’ of possible Causes: vaccinations and diet.
If your child was talking, social, laughing, happy and then they had a vaccination, immediately got a fever and then 48 hours later your child was screaming, head banging, non-verbal, with no eye contact, I can see how you would believe vaccines were to blame. I get that.
I also get that if you had five kids all fully vaccinated and only one had an ASD and all the research you read said the vaccine-autism link was non-existent, how you would passionately defend vaccinations.
I get why parents write in their blogs about the details of their efforts to potty train their 9 year old child with autism. I get why autistic adults find that demeaning.
I get why parents use positivity, humour, sarcasm and snark to share their experiences of raising their child.
I get why adults with autism want to be known as autistic adults. Why they see their autism as an intrinsic part of who they are, not as a separate part of their lives. I also get why others advocate for person first language and why parents say ‘my child with autism’ in order to express the desire that their child not be defined by their autism.
I get why autistic adults and autistic adults who have children want to be listened to, why they strongly dislike organisations that portray them as children (‘infantalization of autism’), and are deeply upset by those who frame autism as a tragedy needing to be conquered, cured or fixed.
I get why parents have a hard time listening to the view point of high functioning autistic adults, when their own ASD children will never speak, read, write or live independently.
I get those who love ABA and those who loathe ABA.
I get those who live by ‘special diets’, and those who see it as a waste of time and money.
I get parent bloggers who write strongly from the point of view of their ASD child. After all, for the ASD person it is their story, their struggles and their journey. Mama’s stress is not the headline story-it’s the joys and struggles of their child that are put front and centre. I get that.
I even get the mother who was brave enough to share on her blog about the one time (by her own admission it hadn’t happened before and hasn’t happened since) that she ‘lost it’ and hit her kid.
In the midst of autism discussions, opposing viewpoints and controversy I come back again and again to a quote from autism researcher Dr Andrew Whitehouse: ‘Autism is a messy truth’. Maybe autism will never be packaged into that tidy box with a pretty bow on top. Maybe there will never be a one size fits all way of talking/writing/understanding autism. I gotta say though I do love the (very passionate!) autism community I am a part of, both in real life and on social media. Even when I disagree.