I LOVE to read. A LOT. I don’t mean I read once in a while, I mean I read during much of my free time – while I eat, at the doctor’s office, at the play place when my son is playing. If I can grab time to read, I do. I love fiction – Nora Roberts, Mercedes Lackey, Patricia Briggs are a few of my favorite authors. They create WORLDS with their words! When I read, I SEE the worlds they create – it’s almost like watching a movie.
Of course, being an avid reader, I dove headfirst into reading about autism in an effort to understand what my 6 year old son might be experiencing, what challenges he might face, what tools I could use to help him make his way in our predominantly NT world. First I read Temple Grandin, then I found Autism Speaks (which had a lot of toolkits and useful info), then I found blogs of parents. And then I found the book that opened my eyes to a whole new perspective – The Loud Hands Anthology.
I’m thinking about how a few simple words reshaped my world and change how I think, and how I use and share these words in the hopes that the world will shift a little bit for others as a result.
The words “autism spectrum” – two words that cover a lot, of course, have shifted our lives. Every experience of autism is so individual from one person to the next, despite the commonalities – if you’ve met one person with autism, you’ve met one person with autism. Our son’s experience of autism is “mild”; DS has language (lots of it), and is sensory seeking rather than aversive (it’s easier to find input than avoid it, it seems). He has very few meltdowns – maybe one every couple of months, mostly due to difficulty processing expectations and how they work in reality. His challenges are mostly social, and I’m sure we’ll find this getting more complex as DS gets older and has to navigate the much-more-complex-than-elementary-school world. I want to be prepared – I want to have the “right” words, the right tools, the right attitude to help him.
I came upon perspective-shifting words while reading the Loud Hands Anthology – a must read for, well, pretty much anyone, but especially for those who know someone on the autism spectrum in any capacity. The writings are all by AUTISTIC people, not caregivers, not teachers, not counselors, not parents, etc., but people that are LIVING autism from the inside. I devoured this book in a day because I NEEDED to understand, at least a little bit, ways my son might be experiencing the world differently from his dad and me, so we could make sure he has the tools he needs to live in/deal with the NT world around him.
Here are a few of those powerful words:
“Neurodiversity” – defined as “an approach to learning and disability which suggests that diverse neurological conditions appear as a result of normal variations in the human genome”; “part of the authentic forms of human diversity, self-expression, and being”. (wikipedia)
“Neurotypical” – “a term coined in the autistic community as a label for people who are not on the autism spectrum” that has since expanded to include atypical neurology in general. (wikipedia) I fall in this category, generally (I’m a bit of a geek, so I have my “neurodiverse” moments).
“Disease paradigm” – “Neurodiversity Paradigm ” – please click the links. I can’t paraphrase well enough to do these justice. Basically, words influence how we perceive the world, and the words we use affect the conversations around and about autism.
“Quiet Hands” is a term used in ABA therapy in order to reduce self-stimulating behavior (also called stimming; for example – flapping, finger waving/wiggling, rocking etc.), so that the child appears more “typical”. After reading the anthology, this term makes me tear up. I can’t explain it any better than these bloggers, so please read this, and this, and this. And let your child stim.
One more powerful phrase that basically says it all – “Nothing about us without us.”
Autistic people have to be part of the dialogue. Their feelings, their desires, their experiences cannot be discounted, regardless of how different they are from our experiences. It’s not all about us or our “challenges” or our feelings as parents. We HAVE to consider how we talk about, how we think about autism – because it is part of who our children are – and our children can hear us, because how we think affects how we act and feel, about how we behave.
Behavior is communication so we as NT’s / parents / caregivers / teachers / counselors have to think – what are WE communicating? Because words CAN mean everything.