Autistic children, school and burnout.
Dec 04, 2020
Today, Mum (me) has had to tune into one of my little people and exercise my responsibility to hit the skids, so to speak.
My girls love school.
They'd push through absolutely anything to be there.
And whilst that's great, and wasn't our experience with all of our girls, it means that we as parents have to intervene at times.
We're autistic parents and so we know and understand the dangers of not taking a break, resting and having adequate down time.
We live in a society that favours neuronormative standards and so our autistic children are often, if not always, encouraged to push through.
To show up, shoulders back, fears aside and move on.
This highlights one of the greatest dangers in considering and treating autistic people as "people with autism".
I respect and accept how we all identify differently.
But I also know why I choose identity first language.
Many people when they hear "person with autism" make the assumption that we are non autistic people with a side, smidgen or touch of autism that can be "dealt with" or treated.
This is often the case as evidenced in many early interventions and therapies, and expectations of our autistic children in educational institutions.
Autism is central to my being.
It influences how I eat, sleep, think, my language, my entire neurobiology.
And that's not bad.
It isn't bad to be me. I'm proudly autistic.
But when we're expected to send our autistic children into school settings where reasonable accommodations are limited to fidget tools (sometimes this is even denied as it means other children will want a fidget tool - more evidence of ableism and predominant neurotypes being prioritised), when we have to apply for reasonable accommodations and supports and might be knocked back, we are urged as parents to action the support we know we need and our children need.
I am autistic.
I need different things.
My learning pathways are different.
Sometimes, school will not be a right fit for me, and for my neurokin and this isn't bad either.
My little person is home today, having a break.
As they're non speaking, how did I know they needed a break?
They woke up, exhausted.
Struggling to get up. Angry. Using their body to communicate anger and frustration.
Compliant, but at odds with their internalised experience and need for rest.
So, I called it.
"All finished school today" I said, using key signs.
"Stay home and hang out with Mum."
Where our children do not get the rest they require, they burn out.
Burn out is real. It's the smoke that signals the fire of trauma. And we won't always recognise it as autistic people, but we can't recognise it if we are dismissed and unheard by social and cultural constructs and structures that don't understand or accept that autistic people have very different needs to help them SURVIVE before the THRIVE.
In burnout, I cannot hear properly. My receptive language is compromised. My processing is slower than slow. I am exhausted. I am angry. I am reactive. I am likely to self harm when not left alone. I am emotionally, mentally, spiritually, energetically and physically unwell. My body hurts. My muscles and joints creak and ache and it is hard to move. I can't retain information. I can't recall events, conversations and simple moments. I struggle to eat. I struggle to shower. I am disconnected and detached and dissociated.
I can't be at school, work or anywhere else on this earth in that state.
My sensory systems are so disoriented, my brain is in threat response and I'm in a consistent space of fight or flight. I am dysregulated.
I need rest.
Our children need rest.
This will be the case all throughout their lives.
So, I made the call this morning. I made the call to have my child rest.
If I don't make that call whenever, wherever, and as often as necessary (and we do this liberally as a family), my children risk tipping over into trauma and will then be completely disabled by their environment and experience; unable to leave their rooms at all.
What reason do we give when our children are late or absent?
We choose "observation of culture or religion".
Autistic culture, disability culture is our family culture.
We are fortunate to be heard and not dismissed when I apply the breaks. But I don't even consider whether it's acceptable or not. I just do it because it's a very serious neurobiological need, like food, air and water.
I call the school and let them know we're taking a break. No questions asked, ever.
But I do also start out our school year with a little letter that talks about our autistic family culture and so educators and therapists always know where we are at as a family and what our priorities are.
Image Credit: Ketut Subiyanto