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 🧵

⬇️

#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...

⬇️

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.

⬇️

#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.”

⬇️

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).

⬇️

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).

⬇️

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.

⬇️

@KatyElphinstone

…. Impossible rn. I am begging for help im not getting as an adult. Got help as a kid. No real help as an adult.

@Energetic_Nova @KatyElphinstone OMG yes. I have been searching for months, and every agency a friend calls for me, every outreach I do myself, says yes, there is a crying need for private duty non-medical case management (or medical included, if they don't already have a patient advocate) for people who aren't on Medicaid. But there is no such thing.

Not that I got help as a kid though, ever.

@Energetic_Nova @KatyElphinstone

I just got told off by someone (an LISW/organizer!!) I'd been corresponding with for months. I thought I was on her waiting list, but she suddenly decided she's too busy to come to me a little outside the city. She said "there are companies that do it, but I don't know their names off the top of my head." So that means she has access to their names, just not memorized, right?? I asked her and she said to stop bothering her.

@callisto @KatyElphinstone
I got a case manager… but its not the intense help that I need. I bet a case manager is enough for a lot of autistic people tho. But I am asking for special ed essentially…. And it doesn’t exist for over 21s

@callisto @KatyElphinstone

I am needing a daily structured place to go and advance. There is a community center for mentally ill. And that’s closest I can find for daily support especially at low or no prices. Community center goes bowling and stuff. Its not what I was asking but it is… something. But not intensive support like high school…

@callisto @KatyElphinstone

I just got approved for C-Van (a little bus that goes to your house and can transport you to non medical locations that were missing for me. ) so setting up a structure that isn’t intended for someone who needs a lot more support… *sigh*