Where's the 'Village' for Autistic Kids?

So, you give birth and come home and marvel that they let you walk out of the hospital doors without having a clue how to take care of this fragile being. It’s OK though. You’re assured there’s a village behind you if you need help. You are not alone. You settle into your new life with the other new parents and with all the sleep deprived, challenging, and sometimes wonderful moments.

And then you notice that your child is odd. He doesn’t crawl, he ignores story time and stares into space. He collapses into a hot mess around noise - any noise. So much for movies, birthday parties and tourist attractions! He doesn’t seem to know what to say to people, and you notice him imitating others as if following a script but still somehow missing the mark. You stop being invited to playdates. The village tells you you’re doing it all wrong. Your own mom even tells you you’re doing it wrong. And soon the teachers are agreeing too. But you’re following the damn manual! You reread it and apply it with more rigour but still the same undocumented results.

Then, after a random comment by a stranger, or perhaps in a moment of desperate reading - but if you are lucky, you simply have an astute pediatrician - you realize that maybe you were given the wrong manual. You get your child assessed - out of pocket of course, because the publicly funded waiting list is years long and this is time critical. The verdict: High Functioning Autism. Fuck. Oh, don’t worry the village is behind you. We have resources! But you’ll have to wait a bit because well, there’s a waiting list. Sorry, no manual for this. Good luck!

So, in the sliver of time you have left between parenting, work, and everything else you study for your unofficial PhD in ASD. There’s so much to learn! It’s not what you thought it was, certainly not Rain Man. Your vocabulary expands - vestibular, proprioceptive, interoception, sensory processing, dyspraxia, and executive functions! Wow. A manual or central help desk sure would be handy to guide you and everyone else going through the unofficial program because you learned some of it too late to be of use. But you understand: it’s too much public money for the 2% of the population who are impacted. And you feel oddly grateful that one of your parents had died just in time to fund all the helpful interventions - like occupational therapy!

School. You feel estranged from other parents at the open houses who ask questions about curriculum. You, on the other hand, are assessing things like the corridors (too much echo) and the classroom decor (way too many posters with screaming colours and what’s with all the balloons hanging from the ceiling!). You visit a Montessori school that looks perfect and ask about noise levels not expecting a look of horror from the principle who takes a step back and tells you in no uncertain terms that this is not the school for kids like that - whatever that is because you didn’t tell her. Brilliant, but sensitive?

A colleague tells you that their kid’s private school sets aside a crazy percentage of fees to accommodate learning disabilities and then looks at you and hastily adds that of course she doesn’t at all mind her money going to help those kids, but you can tell that she does. Your child does not get into that school. Too many fidgeting kids in the giant echoing entrance exam room.

You learn that no school really wants your child. So, he goes to a local public school. Oh, not to worry, the school accommodates autistic kids, and they have resources. But no, he can’t bring a fidget toy and he can’t chew gum - it’s not fair to the other kids. Everyone is equal here. They don’t want to hear about how chewing provides proprioceptive input that helps your child keep calm and focused on his work. But he really should stop fiddling and stop chewing on all his pencils. He will have to adapt to norms or how can he be expected to fit into society! In a few years, the hindsight irony of this will be enraging.

Every day your child is overwhelmed by the noise, by the lack of clear instructions, by not knowing how he’s supposed to act. He puts up his hand enthusiastically to answer all questions until the teacher stops calling on him so everyone else can have a fair turn. This baffles him. Is the teacher angry? He tries to imitate the other kids and somehow gets into trouble. He holds in the feeling of sensory overload from all the dam clutter of posters and boisterous chatter, until he can’t and gets into trouble. He doesn’t understand why he keeps getting into trouble. The teachers don’t seem to like him. Many more do but they don’t stick in his memory.

On parent-teacher night you are told that - he’s probably the smartest kid in the class therefore his so-so grade is really about not doing the work as requested; he was able to do it this one time so he can if he really wants to; autism has nothing to do with it; he’s just not trying. And no, he still can’t have any chewing gum. You will hear this every year from now on. This is only grade one.

You switch to a semi-private school with shiny desks, huge promises - and a particularly knowledgeable special needs counselor. So disappointing then that the parent-teacher experience is the same. Your child’s friend with auditory processing disorder requests teachers to wear a microphone that transmits directly to her ear. One teacher said no. Not in her job description. The special needs counselor can’t be reached – easily, in any case. Way too many special needs students and he is all alone. You hear that early the following year he has a breakdown and quits. But you are already on to the next school.

You find out that autism and learning disabilities are essentially not taught as part of the core curriculum in teacher’s college. Not more than a fraction of one lesson, in any case. This makes sense. How long did it take you to only start to understand it all? Don’t get me wrong - there are a few teachers who know this stuff, but it was electively acquired.

But there are resources! Finally. In high school he is assigned a childcare worker (CCW) whose job is to discreetly check in on him to make sure he understands what to do. You breathe easy that year. All seems to be going well despite the pandemic and the online classes. He is up late working on assignments. You check in with him every day, ask how it’s going, and get a thumbs up. Two weeks before the end of school the CCW phones you with a heads-up. Expect him to fail two courses because he didn’t hand in a single assignment all year. Not. One. Assignment. And you only find out now! The CCW says your child wasn’t trying and he really should if he wants to get anywhere in life.

You wonder - what was the CCW actually doing then? Oh - helping the non-coded kids in the class because yours is obviously more capable than presumed. Yay, all those years of learning how to mask have paid off for him. Turns out, CCWs are not required to have any training in understanding ASD either. They get paid for using their common sense.

And then you wonder - what was my kid doing if not studying? And this is where your world truly collapses. Did you think that the hardest part was the years of reading to understand the issues, of finding help for your child, of setting up play dates to facilitate friendships, the interventions to take the edge off the co-morbid physical limitations? Of feeling like almost nobody in the world cares about autistic kids? Did you think making it to adolescence got you past the hardest part?

You find out that through his goddam computer he has been in contact with several pedophiles. Pedophiles! As in, adult men asking him to upload explicit photos and videos of himself in exchange for a discord nitro upgrade and “compliments”. And of course, exposure to extreme hypno sissy porn. Hypno sissy porn!? You had no idea this kind of shit even existed. It’s not your dad’s porn that’s for sure!

You are soon to find out that there is no one who will help your child make sense of it all - the guilt, the shame, the confusion, THE ABUSE. The therapist - affirming, of course, because anything less is illegal - assures him that he was drawn to the pedophiles because of his underlying and suppressed trans leanings. And also, incidentally, what happened to him was totally illegal. Phew - at least she knows that much. And then she tells him how and where to get hormones. All fixed! And hormones courtesy of the government, baring the waiting list, of course. Thank god for the waiting list, this time.

New school. New progressive school! And boy do they love to support their trans students. This is what our school is all about the head teacher announces at the graduation ceremony. Your emotions are mixed. How nice that your child finally gets praised and feels good - but couldn’t they have done this years ago? Couldn’t they all have educated themselves about autism? Praised autism? Celebrated autism? Have autism pride month? Given you and him the goddam support before the self-esteem problems snowballed?

You wonder why the enthusiasm for trans inclusivity does not extend to autism - because you have the distinct impression that your autistic child is considered a drag on resources; that they are making reluctant concessions to him even being there. Why is trans afforded exceptionalism while the autistic student must conform and adapt in the name of fairness? Why is a trans condition accepted and encouraged without the slightest questioning while you have to constantly explain and prove an autistic status – and even then, some think he’s faking it? Because no, he isn’t simply slacking off and making excuses. Why are all teachers and staff ‘educated’ on trans identities and gender yet know next to nothing about autism or learning disabilities? Where did all this previously non-existent support money for trans issues come from? Why is the welfare of one group of greatest concern while the other is Your Problem. Where is the real inclusivity?

Nobody wants your autistic child, not even the neighbours. He is your problem. But everyone wants your trans child, to fuel their own needs of moral righteousness and earn votes. Will they be there after he realizes that transitioning won’t fix his problems - won’t help him understand the nuances of social interaction to overcome crippling social phobia - won’t help him understand the implied meaning behind directives for school assignments or employment tasks - won’t help with sequencing basic tasks or with executive functions? In short, won’t help him actually be fully happy and functional at school, at work, in life? Nah! That’s an autistic problem - your problem. But let’s just celebrate how authentic he looks!