- Category: We're All a Little Mad Here
- Published: Sunday, April 23, 2017
- Written by Kristen Schroeder
I last wrote about the awesome month of April being the awesome month of autism awareness. Furthermore, I challenged the readers (y’all!!) to help move the collective thinking and discussions surrounding autism into more of an autism acceptance stance.
I wrote last week about how my kids are proud of who they are, and how understanding that autism means their brains are wired differently and work differently than most of their friends’ brains do. On the surface, it’s a pretty easy explanation. I don’t want to diminish though, that we have had many tears, many gut wrenching conversations about how being different is not so easy. Trying to explain why they don’t get many birthday invitations or sleep over invites is a difficult conversation to have. “Because your brain works differently than most other kids,” is not always an acceptable answer, either. I’ve often commented that it would have been nice to get an instruction manual with these kids, because I’m so sure I’m messing things up everyday because I’m missing the manual! All we can do is muddle through sometimes, and pray, like all the time, I guess. I am no expert, but I’m proud that my kids are proud, of even the hardest stuff.
So, we (the oldest and the youngest- the two on the spectrum) were in the car for a road trip on Monday. Tommy had been home for Easter, and his birthday, and I was returning him back to Woodrow Wilson. We got on the subject of April and autism and awareness.
“I hate that phrase!” Tommy exclaimed, “Aware... of what?!”
“Autism,” Katie answered, “yeah, I think it’s weird, too.”
“Huh,” I chimed in, “one of my friends said she was wary of any day or month with the word ‘awareness’ attached to it.”
“I couldn’t agree more,” Tommy answered.
“Yeah,” Katie added, “So you’re aware... now what? Do you want a prize or something?”
When I can’t think of an intelligent response, “huh” usually suffices. It works well when I’m surprised or flabbergasted, too. Which, of course, I was-- both surprised and flabbergasted. I thought they were both “good” with autism awareness stuff. I thought they understood that the awareness campaign was to help more people understand and be aware of the differences and challenges that arise with autistic family members and friends. I, therefore, started to espouse all the things good about the autism awareness campaign and I even told them that I had a post going up that very day about all that stuff.
“Mooooommmm,” from Tommy, flapping, in the back seat.
“Mom!” from Katie, bouncing in the front seat. “It’s ok!”
“It’s just that I think it’s not a bad thing, you know, being aware and even accepting of people that see the world differently, and all that.”
At this point in our trip we were on the mountainous portion of the highway, so I couldn’t really look into my kids’ faces and try to ascertain exactly what they were feeling and trying to convey. Tommy tends to be very wordy, which is interesting because he was so not wordy until he was four. Katie is more physical, though. Their faces truly help me understand them better. I felt a little blinded, at the moment, on a curvy mountain road.
“Alright, well, awareness is fine, mom, but then what do you do with that? So, that is what I mean.” Tommy answered quite plainly, not upset; Katie, I noticed out of the corner of my eye,nodded in agreement. Then, Tommy continued.
“Furthermore, I think autism is what makes great people great. You can’t argue that some of the most brilliant people have autism, and a lot of them are my heros. This is what I love about the idea of a multiverse. The multiverse is full of different people, warriors, heroes, artists, that all probably have autism... so why do I need a support group?”
Wait... what? Support group? Katie rolled her eyes, and sighed, “Here we go.”
I guess they had already been talking about this, and I missed it.
“Yes, yes, in school the guidance counselor wanted me to go to one, and in highschool I had to go to one, and they even have one at Woodrow Wilson. I’m not an addict or on drugs, or addicted to anything bad... so why would I need a support group? It’s stupid!”
“Huh,” I answered. “Well, I have an easy answer, actually.”
“Go on,” he prompted.
“Well, support groups don’t have to be bad. They’re good, actually, even if you’re in one for a not-so-good reason. MOPS (Mothers of PreSchoolers) is a support group. Prayer group is a support group. Small group is a support group. I’ve been to several autism support groups, and I have even been to a breastfeeding support group.”
Eeewwwwww- from Katie. Flapping from Tommy.
“So, see? Sometimes people just want and need support in things that set them apart, or make them different, or are challenging. It helps to make you feel like you aren’t always messing things up, and that you aren’t alone.”
Without missing a beat, “Well, I don’t mind being alone.”
I know. I know. I know. It is kind of crazy that the majority of people with autism that I know would much rather be alone, or in a very small, like only one other person, group situation. Maybe the groups are made by the neuro-typical people that want the neurodiverse people to feel more like the neuro-typical person would want to feel... In other words, a support group sounds like a great idea to me (neuro-typical), but it would be to make me (neuro-typical) feel better. And here is the epiphany: autism awareness should be about acceptance. We all see things a little differently, and in the autism community every person with autism is different. Hopefully, the awareness part of the autism awareness campaign will lead to more acceptance of those very things that make each person with autism unique. So, after a pregnant pause, I answered:
“Well, then, I guess you don’t need a support group, then... but, isn’t autism awareness ok?”
“Yeah, just leave out the support groups.”
Copy. Got it. Keep Calm. Accept autism. Support groups optional. And Parent ON!