(image found on Awareness for Autism UK Facebook page)
So what is Autism exactly?
Well let’s start with the definition of what Autism is from a clinical perspective shall we?
Autism according to the newest diagnostic criteria is diagnosed as follows (as per my understanding at least).
In order to be diagnosed with Autism you have to have significant impairments in social interactions and communications. They also must exhibit restrictive and repetitive interests and behaviours. This means having narrow and specific interests that impair them in some way or having behaviours such as rocking, flapping and other stereotypical behaviours that again impairs their ability to function 'normally” on a daily basis. They used to classify Autism Spectrum Disorder with names such as Asperger’s, and PDD-NOS. These names are no longer officially used and instead there are levels 1-3 depending on the needs for support. Autism is lifelong, usually becomes apparent around age 3, and can be associated with other identifiers such as learning disabilities, or other anxiety based disorders like OCD.
Bored yet? Can you tell that I teach Autism workshops?
Now that we have the official stuff out of the way we can get into what society would tell you that Autism is. Autism is Rain Man, It’s Sheldon Cooper from The Big Bang Theory. All kids with Autism have “special abilities” and are just socially awkward but can get over it with a little bit of coaxing. Autism is a disease that is caused by vaccines and can be cured.
Can you tell I am jaded? Just a little.
Ok, now let’s get down to what you are really here for. What Autism means to me as a sibling. I feel it important to make a disclaimer here: this reflects my experiences with my two brothers and may look different for someone else. Autism to me is fascinating, confusing, amazing, difficult, inspiring and an experience beyond anything that I can truly describe. Autism means having a sibling that you have such a ridiculously deep relationship with even if you can’t always communicate it to each other with words. Autism is sitting on the couch helping your brother read “Big Blue Bear”, watching the same movies over and over, playing a very imaginative and well planned out game of Pokemon with your brother in full Ash Ketchum costume with his Pikachu stuffed animal with your hair in a high side pony just like Misty. Autism means having your bedroom destroyed from top to bottom in the time it takes you to go to the bathroom, finding your chapstick half eaten, and your books somehow ripped in half from the spine. Autism means getting to tickle your brother just to hear his giggle, it means knowing how he likes when you scratch his head, it means getting to make fun of the way he smiles (something only we are allowed to do). Autism means not being allowed to have sleepovers, having to explain to your friends what is “wrong” with your brother again and again, and feeling guilty when you get mad at them. Autism means knowing not only the songs but also the words to almost all the classic Disney movies, and knowing all about whatever it your brother’s current interest is (and then being able to use that knowledge with all the kids your work with). Autism is being woken up by “The Circle of LIfe” on full blast in the morning. Autism is getting to participate in amazing events like The Special Olympics and programs such as therapeutic riding. Autism not getting to have your brother at big life events like your graduation or your wedding. Autism is wishing you could spend just one day in their brain. Autism is having a built in thing to write an essay about in every Psychology class. Autism is loving unconditionally. Autism is crying out of frustration. Autism is having fun with no judgement. Autism is paperwork, programs and therapists and workers. Autism is having a sense of self, life and family that you don’t know if you could have learned from anyone else. Autism is wishing your brothers were normal so you could have someone to play with and feeling overwhelmingly guilty about thinking that way. Autism is seeing your brother smile and feeling so incredibly lucky and never wanting anything to change.