My son was diagnosed 2 years ago at the age of 4. I was aware of autism and read about it mostly through Temple Grandin’s books. I had seen Rain Man back in the day, and the Temple Grandin movie most recently. For someone whose life hadn’t really been directly touched by it, I was reasonably well educated about it, but I didn’t (and still don’t) LIVE it.
Some people may say, “of course, you LIVE it, your son has autism!”. Yes, he does. He is autistic, and he has some challenges that we deal with. We are “lucky” in that he is very verbal, academically proficient, not sensory-sensitive. Our lives are pretty much like most neuro-typical families – so far. I worry about what will happen as he gets older, as social situations get more complex I fear he will be bullied. Even though he communicates well, he thinks differently, and I hope he can process things and let me know if something is troubling him. I watch his social interactions and I see the difference, the “other-ness”, and I know how people can be when you’re “not like them”, especially in school. But I think these are worries that MOST parents have, and are not just the worries of an “autism parent”.
But I don’t LIVE the autism experience. My senses aren’t constantly assaulted in every-day situations – I can filter out most noises, smells, etc., unless they’re over-the-top annoying. I generally can interpret body language and facial expresson. Eye contact doesn’t flood my brain with information that I’m unable to process quickly/effortlessly. I am aware of where my body is located in space. I am aware of how my body feels inside (pain, discomfort, sick, etc.). I can regulate my emotional states pretty well. MY stims (nail biting, hair twirling, nail-polish-picking) might not be considered polite, but they don’t get stares. I understand the non-literal nature of turns-of-phrase/figures-of-speech and the BS chatter of small talk. Every day isn’t a struggle to deal with an enormous amount of input, above and beyond the general experience of living.
The only reason I know this, is because I’ve read autistic voices: The Loud Hands Anthology, Autisticook, Invisible Strings, Incipient Turvy, Karla’s ASD Page (Facebook), Aspergers and Me, A Stranger in Godzone, Temple Grandin, Thinking Person’s Guide to Autism. Their experience is not mine. Their experience is not even the experience of my autistic child. But in no way, shape or form does that lessen the truth of their experiences. In my blog travels, I have read reactions of parents who say “but my child isn’t like you – can’t type, can’t blog, doesn’t live on their own – so you can’t speak for them” – and what I (and the autistic people who are sharing their stories) get from this is “If you are not as visibly impacted as my child, you are ‘not autistic enough’ and your experiences don’t matter”. Never mind that the blogger commenting ISN’T verbal, DOESN’T live on their own – these people generally jump on the defensive and don’t take any time to find anything out about the autistic person they are dismissing.
And to their defensive reaction, I call Bullshit! Since when does pain have to match to matter? Since when does one person’s experience make another person’s experience less valid?
Then there is a myth that autistic people lack empathy – which I know from personal experience with my son is false (perspective taking, maybe, but empathy? – no way). Again, I call bullshit – since when is a lack of empathy an “autistic thing”? Neurotypical people lie, cheat, steal, kill, abuse, bully, and otherwise treat people like crap all day, every day – but somehow lack of empathy is an “autistic thing”?! Give me a “socially clueless” autistic person who misreads cues and unintentionally upsets me over a neurotypical person who is deliberately screwing me over for their own gain any day of the week.
So if you know someone who is autistic/aspergers/”on the spectrum”, or someone who knows someone, and if you want to expand your horizons and maybe make the life of someone who is autistic a little easier – READ THEIR WORDS. You might be made uncomfortable by what you read, but growth hurts sometimes – that’s why it’s called growing pains.