Many autistic adults shudder when recalling school memories.

But why do autistic people suffer so much at school?

Historically, it’s been framed that a) school is above reproach, and b) there’s always something wrong with the child who doesn’t manage, and not the environment.

Some are starting to question that.

A thread 🧵

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#School #Autism #ActuallyAutistic #Neurodivergent #EBSA #ABSA #PDA

For many autistics, our problems really start at school 😨

At home, if we’re lucky enough to be in gentle, loving homes, we can be ourselves. Let our minds wander, exploring, into our worlds. Play in the sand, or with our toys, for happy hours on end. Eat while playing or reading or listening to audio/music. Parallel play with others. Choose/adapt our favorite spot. And so on...

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A little detour into diagnosis:

Diagnosis age of children often happens about a year into school, and another noticeable (if lesser) wave of kids get diagnosed a year or so into starting high school.*

Autism is a neurotype. A natural human variant.

Which currently gets diagnosed through behavior and, sometimes, self-report.

*Refs, and a table showing diagnosis age against school start, are in the link at the end of the thread.

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#Diagnosis #Autism #AuDHD #ADHD #Neurodivergent

An autism diagnosis usually centers around two things:

1. Is the person’s behavior annoying anyone,
2. Are they struggling a lot?

(Mostly, it’s n.1 if a child, & n.2 if an adult.)

Many-a-parent has protested to many-a-school that their child is suffering. As I remember, my words were “he’s dying inside.” The answer was, “he’s fine” (read: he’s not creating mayhem).

Sorry to be cynical, but they may as well have said, “no one cares.”

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Many of the signs of autism, as currently diagnosed, would be quite easy to mistake for distress.

Meltdowns, shutdowns, burnout.

Even things like perseverating and stimming (esp. in their less benign forms).

Studies have found that autistic 'symptoms’ often become more pronounced when we’re under stress, anxious, chronically overstimulated, worried, and/or scared (refs at the end).

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Educators & researchers reckon the reason autism so often gets diagnosed after starting school is because the kid failing to socialize properly only gets noticed at school.

I’d argue there are two errors here:

1. Conflating two things: ‘Autism as a neurotype’ with ‘Autism as a problem to be solved’.

2. Assuming school is a benign place full of the wonders of learning and friendship (apologies if my tone sounds sarcastic).

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Stats show that many kids struggle at school with wellbeing & mental health – not just autistic ones.

I think you know where this is going 😊

To re-frame:

1. School is not benign. Autistic kids may be the canaries in the coalmine. Maybe scrutinizing only the family & the child, ad infinitum, is not effective in the long run.

2. Autism diagnosis could center more on our intrinsic traits & inner experience than how much we’re outwardly struggling, or suffering, at any given moment.

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Two questions are begging (and if I see them, you probably do too!):

1. How would people get support if autism diagnosis wasn’t centered so much around our struggling/distress?

2. What is autism exactly, when it’s not being defined (as we are so used to it being) by our outward signs of struggling/distress?

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@KatyElphinstone I think the only way it's definable is to collect descriptions from autists that are not centered on trauma, but on the good stuff. Because I think it's very personal, but I'm sure patterns will emerge.

For my own part, I can say that the physicality of human experience seems less important somehow. I seem a little more distant to what my body needs, or produces in terms of chemicals to influence my reactions.

And so kicking a ball into a goal for the sake of others'...

@KatyElphinstone ... admiration has little meaning. But i could probably bounce that ball a thousand times until I felt connected to the happiness of the thing.

Which means I seek out quiet spaces in which I can let my mind wonder

@jens

I love this idea. And am going to look up some studies, books, articles - and see what material is out there.

Otherwise, I'm envisaging a phenomenalogical study centering the joyful autistic experience.

It's undeniable there are many positives 💟

#AutisticJoy #Neurodiversity #Neurodivergent

@KatyElphinstone @jens I want to read a book on this topic. Only stories about autistic joy! About the upsides of hyperfocus and oversharing and obsession with a topic! About the ways we express empathy, how intense our feelings actually are. I hope you do find some studies at least on this.

@lizzard If fiction is an option here then may I recommend 'Keep Your Hands Off Eizouken' in either it's comic or animated form?

https://en.wikipedia.org/wiki/Keep_Your_Hands_Off_Eizouken!

It's the story of a canonically 'aspie' high school girl who starts an animation studio club together with her two friends. Original creator is openly #ActuallyAutistic IIRC.

@KatyElphinstone @jens #KeepYourHandsOffEizouken

Keep Your Hands Off Eizouken! - Wikipedia

@jordgubben @KatyElphinstone @jens thanks! I love media that contain autistic people.

@lizzard @jordgubben @KatyElphinstone It's not focused on joyful things so much, but it helped our kid(s) a lot:

@Fuchskind has a bunch of great comics published that describe the autistic experience from the inside.

We had moments of "doesn't this remind you of when you ..."? That helped the eldest realize her experiences might be unusual, but not unique, and there are words to describe them, and it's all just fine the way it is - and fine to ask for things to help deal with it.