Autism Awareness Month

FYI My Son has never 'accidentally' done a Nazi Salute

So April is Autism Awareness Month or Neuro Diversity Month or whatever term you want to use. And that means people will throw on puzzle piece attire and say stupid things like everyone is a little autistic or autism is a superpower.

Spoiler alert: it’s not a super power

And maybe I am just a little feisty this evening writing this because my son’s school is having spirit week, celebrating “Neurodiversity Advocacy Month: Celebrating Minds of All kinds”. Which I was initially excited about thinking yes, finally some inclusion and some opportunity to educate the other kids in school, right? If you are a parent of a special needs child who has dealt with public education then you are already laughing at me for being so naïve.

Maybe I missed the memo where the school asked us parents of autistic kiddos or talked to autistic students for input and ideas for an autism related spirit week. Before writing this I did confirm they hadn’t spoken with anyone from special education including the teachers of the special Ed classes.

Here is what they came up with for an autism awareness spirit week:

Monday was super hero day (There wasn’t any description to go with this that I saw)

Tuesday- workout day- “wear workout clothes to represent how our minds work hard in different ways”

Wednesday- “wear rainbow colors or tie dye to show support for embracing and understanding all minds”

Thursday- “passion day- wear something that represents what you are passionate about”

Friday- the usual “wear school colors for unity” yada yada yada

The only day that makes any sense is Passion Day because that is a pretty common theme with autism. Becoming very passionate and locked on to particular subjects. I get that one. Though the description does little to educate the neurotypical kids about autism. The other theme days certainly don’t tell anyone anything about autism. But I guess this is the idea of ‘aware’. I could have accomplished the same thing by screaming autism at the top of my lungs in the middle of the school quad at morning drop off.

So I wrote a little email to the principal. I’m not normally that parent and I try to avoid situations where I come off as a dick (though somehow I often tend to come off as a dick lol so who knows). I told her that maybe I missed where she had asked for input but here are some ideas I have for next time that would accomplish not only being fun but could actually let the other students know a little more about autism. (I won’t bore you with my list of cool ideas). I went on to include what I have said time and time again too anyone that will listen: I want to talk about autism. I want to talk about my son. I know other parents would love to talk about how autism affects their child. It’s not something us parents want to be quiet about.

People rarely ask me anything when it comes to autism and my son. How it affects him. How it affects us as a family. What it means. Etc. And when they get anywhere in the vicinity they do it like they are walking on egg shells and not sure what to say. It reminds me of after my dog died and I was back at lacrosse coaching. No one wanted to say anything about Buckner or remind me he wasn’t there at practice. The players, the parents, everyone was so careful what they said to me. But most people know what it is like to lose a dog.

Spoiler alert: it sucks

But not everyone knows what it is like to have autism. Or to have a child with autism. So those of us advocating for our loved ones want to share that with you in hopes that the world will be a little more inclusive for our children as they grow in to adults. In short, I don’t want you to be a dick to my kid.

I haven’t heard back from the principal. And maybe she doesn’t even have a say in these kinds of things and the school gets some generic bullshit package on how to bring up different topics throughout the year as per the state requirements. Who knows?

So my first post in relation to Autism Awareness Month is this: don’t be afraid of autism. Don’t be afraid to talk about it. To ask autistic individuals or their family members about how autism affects them. And don’t tip toe around the topic with us parents of autistic kids. Because I assure you, we love talking about our kids.

Autism is defined as a neurodevelopmental disorder characterized by persistent challenges in three keys areas: social communication and interaction, restricted and repetitive behaviors and cognitive development. You often hear it referred to as a spectrum because the symptoms and severities have a wide range. The saying I heard in 911 dispatch academy was: you meet one autistic person, then you’ve met one autistic person. Everyone is different.

But what people often think of as a spectrum is left to right, with terms like low functioning on one end and high functioning on the other

Spoiler alert: no one likes the terms low or high functioning when describing autistic people. So don’t use them ;)

The best way I heard the spectrum described was by an autistic author who explained it being not left to right but more like a pie. Everyone’s autism was a pie with an equal amount of slices. Each slice representing a symptom. So slice examples could be tics/fidgets, anxiety, poor eye contact, noise sensitive, fixations, emotional regulation, etc. Some slices will have a few bites out of them while others could be missing big chunks. Each person’s autism would present differently.

For my son, The Intern, this is how his autism presents itself: he started out nonverbal. And after almost three years in speech therapy he is very verbal but with articulation issues. He is a gestalt language processor so he hears phrases and words on TV, or in conversation and he will repeat them. Often in the right context of a conversation we are having. A recent example, I was bringing his lunch to him at the table and it was hot from just coming out of the microwave and I said, “you got to wait a second, it’s pretty hot still” and my son replied back, “too hot for the hot tub,” cause he heard me doing Eddie Murphy’s SNL skit of James Brown Celebrity Hot Tub several weeks ago.

He needs a heads up when it comes to transitions so I am always saying five more minutes before x, two more minutes before x, one minute.

He has to have something in his hands most of the time. It makes him feel comfortable. He fixates on balls of any kind, any place we go. He gets in to routines and they cannot be changed. I drive the same way to Target no matter the traffic. I cannot back in to the garage after getting groceries. He has to see every single storm drain before we walk in to speech. But I would say the most noticeable trait would be he repeats phrases over and over when he’s anxious. These phrases don’t make sense to other people and often I have to repeat them with him to get him back regulated. An example would be “I’m sorry Kyle said good morning to you” (which I said to him after our neighbor said hi to him in the backyard over the fence and it scared the crap out of my son. When he gets that same feeling, he will say that phrase over and over).

He remembers EVERYTHING. But a weird concept of time. He will talk about something from weeks ago and refer to it as yesterday.

But it’s not all gloom and doom with autism. He has amazing attention to detail. He spells words and recites the alphabet forward and backwards. He loves animals. He is the most sensitive, empathetic little boy. He finds joy in everything. He is always smiling and he loves to make others smile. He has shown me a way of looking at the world that just blows me away every day. I do not regret for a second that he has autism. I am proud to be his mom.

I will try to share more about autism and our lives this month. And I welcome any questions or comments.