The Autistic box

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image If you were to ask me to define Autism, I wouldn’t be able to.

If you asked me to describe what my child likes and dislikes, or what his strengths and challenges are then I could rattle off a million things, just like every parent can.

Fitting my son into the autistic box can at times be fuzzy and unclear, and yet it is so clear he is autistic.

People always ask me

“what does he do that is autistic?, he doesn’t seem to be autistic to me”

I usually tell them the things like:

“He doesn’t answer direct questions all the time, he repeats phrases from books and tv shows, he has socially ( but cute) awkward interactions, and some sensory behavorial stuff.”

To which they say,

“That sounds like every 4 year old.”

It’s true, it is hard to describe the subtleness that makes up his autistic diagnosis, and it is true that he is very high functioning, so as to “pass” for a typical 4 year old. He doesn’t fit the stereotypical autistic person you may think of (Rain Man, Temple Grandin), but maybe the underlying characteristic is that he speaks a different language, he has different social behaviors than we do. All the social cues we intuitively understand and learn he has made up his own interpretation. It doesn’t mean that he doesn’t have the same desires as we do, he is very social, and loves connection and attention, he just has an interesting and different way of doing it.

On the Playground:

R is riding his bike. R sees a couple girls playing with blocks. He comes over to them and walks around them in a circle, pacing like lion walking and walking around and around until he finally says

R:“You need to ask if you want to play with them, You need to ask if you want to play with them.” Cute little blond girl: looks up, “Yes, you do!” R: “Can I play with you?” Cute little blond girl: Ok, but you have to get your own blocks R: Runs over and gets blocks and comes over and plays with them.

And while most kids don’t prompt themselves before asking to play, or pace around someone before you start a conversation, it still seemed to work but “typical” is not his first language.

It is our goal is to help teach R to participate, thrive and learn the language and behaviors of mainstream society and it is also VERY clear that he will need support in doing so.

I’m not going to lie, it has been a bit of a challenge to transition from a preschool where he was with two teachers ( one of which was special ed), and two aids (also special needs trained) to a school with 25 kindergarteners and 1 teacher (with seemingly no special needs training)

And as far as we can tell R is among mostly typical (meaning non IEP, or autistic) 4-5 year olds with a general education teacher (no special ed experience)

And while I can have empathy for what is must be like to be a teacher with no supports in the classroom, with little pay for the effort they put out, or have the education to handle special needs population, I have been disappointed and saddened in the feedback we have received about how R has been treated in the classroom and how his peers have outcasted him.

“Teacher doesn’t offer positive feedback ever. Teacher constantly pick on R and makes him a target. Teacher leaves R outside and doesn’t come and get him. Teacher alows R to roam in and out of class with no supervision. Teacher gets visibly frustrated with R and sends him off to the special ed classroom periodically throughout the day.”

I am grateful for how far we have come with special ed services. And there have been HUGE changes in the awareness, and the inclusion of autistic people in the last 60 years. Thankfully! this isn’t the 1950’s where my son may have been thrown into an institution and locked away from society. But still it is clear that we have a ways to go in terms of understanding what autism is, and teaching our children and peers the beauty of being different and seeing the world differently and of its value in this world.

I’m sure this won’t be the last bump in the road on this amazing journey with R. With each one I cry, get frustrated, yell and scream and then I dust myself off, consult with Mr Science and the GIANT AMAZING TEAM we have supporting R, make a plan, figure out the best way to support him and try to provide him with the most positive experience he could possibly have.