I don’t even know how to caption this, or preface it. So I will do what I always do, sit down, close my eyes, and start typing.
When you say you’re an “autism warrior mom” I wonder if you have Autism. I hope so because then I know you’ll understand first-hand what it means to fight our fight.
“But that doesn’t mean I can’t advocate for my child” you say. Well, and good. Duly noted. But you, as a neurotypical, can only go so far. You can take that battle only to the level of YOUR understanding, not ours.
I know several NT parents who wouldn’t even fit in this category so please understand this is not for them. No, this is for the “Autism Speaks” militants, the ones who get combative towards us adults with ASD. The ones who can speak, and get a job. The ones who are STILL. AUTISTIC. We somehow are seen as an offense, an affront to their sensibilities because they – for whatever reason – see our lives and our ability to speak as a threat.
I see it on all of these public pages. These women, and I say it that way because these are mostly women who do the most posting and commenting. I understand in a rational way that this is not all inclusive, but for the purpose of this post, it’s going to stand. Hopefully most of you are aware enough to differentiate and separate yourselves from it if it doesn’t fit you.
Stop downing us.
Stop belittling, demeaning, or trying to write us off because you think your precious boy has it harder because he can’t speak, or because he still wears training pants.
We’re the ones who KNOW what it’s like from inside that box. We understand more than you can even imagine, what motivates your child to scream, hit himself, or stim in any number of ways. We’re the ones who can speak and so we do. We speak to TELL you the reason your kid is biting himself is because his routine was changed too much, or unexpectedly.
We’re the ones who go to the schools for our own kids, and get into battle after battle after God awful battle, to get the principals, the counselors, the teachers, to LISTEN when we say “this needs to be modified, and here’s the reason why.”
We’re the ones who want the school system to change its modus operandi so that TEACHERS have more adaptability in their mainstream classrooms, so that if your little Jeffrey needs to have a quiet space all his own in the room for when he gets overloaded, he HAS it and not get punished for it.
When they crinkle paper because of the sensory need for the sound or feel, during a test or when they’re nearing their threshold, it’s not another note sent home about how he “just doesn’t pay attention”. Or how “she needs to learn how the world works.”
Because frankly, the way the world works, SUCKS.
When a student needs to call mom because she knows that MOM can calm her down with just a few words if something happens in the classroom or at lunch. When he zones out during English or social studies and doesn’t finish his class work because he doesn’t understand the open-ended nature of the questions being asked, the teacher needs to know how to calmly explain – in detail – EXACTLY what is being asked of him. Without sending him into meltdown because the teacher didn’t explain it fully.
We’re the ones who drag teachers into meetings every two weeks for the same damn issue, because our kid is being bullied and it’s being IGNORED.
We want these schools and staff to go through decent training beyond their academic requirements, to learn how to be flexible on their students needs, ALL of their students. And to stop other kids from the ugly sniggering, making fun of us behind their backs, sometimes to their faces. To use these experiences as TEACHING moments, so ALL kids learn how to watch out for each other, to learn how everyone is a genius at something and just because they take longer or need to stim DOES NOT make them any less intelligent or capable of learning.
We want our states to get the funding they NEED to provide aides in the classroom for YOUR kid. The one you want a “cure” for, like he’s somehow a diseased menace. We want our states to stop cutting out those assistance services for ASD kids who become ASD adults.
We want our companies to stop blathering in about “inclusion and diversity” when they still allow for the EXclusion of anyone who doesn’t fit their ‘corporate’ mold. Their standard business model is flawed, and it needs to change. Companies need to allow for quiet work spaces, to allow for extra time if an ASD employee gets overloaded at work, without docking pay, or writing them up, termination, or plain out harassment. ADA accommodations don’t stop just short of Autism. And it needs to be understood by hiring managers, Human Resources personnel, and co-workers.
We want YOUR kid accepted in a mainstream classroom, right along side ours, and the neurotypical kids. Because until they are all integrated, there will continue to be a great divide of compassion and inclusion. You want an end to bullying? That’s how you achieve it.
WE fight this for YOUR children. For our children. We want your kid to be given every single chance he or she needs to grow up and HAVE a life worth living. To still get those services beyond age 18. Autism doesn’t just magically disappear once the legal majority is attained. Those services shouldn’t stop either.
So stop attacking us when we say that we don’t need a cure. We aren’t a ham.
Stop telling us that we don’t count because we can talk.
Stop telling us that we can’t possibly understand what YOU go through. We know what your KID goes through.
Start ASKING us, what can I do? What would help best? What should I look for? How should I respond when x, y, and z happens?
WE ARE the neurodivergent.