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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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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All of your thoughts on these questions are most welcome – and, of course, on the whole thread!
All the references for this thread, and a table showing the median age of diagnosis against school starting age, are here: http://www.neurofabulous.org.uk/autism-in-the-school-years.html
(Note: the short essay here is my 'academic writing tone' - it is still me, I promise!)
Yes - the whole environment seems almost designed to be overwhelming, and highly stressful! 😨
@KatyElphinstone thanks for sharing your thoughtful insight!
I have had the discussion with several psychologists, about the way to we diagnose. No one could see a world, where they would be able to diagnose before the signs of struggle was big enough.
In Denmark we also see the long waiting list influence who is even sent on to be diagnosed, since they prioritize the ones who seems to have the hardest time. Problem is, this leaves the masking kids last in line, with horrible consequences.
Yes, that's true. And I don't think supporting people should need diagnoses. The one thing should not have to depend on the other...
Here in Scotland current waiting lists for children are now up to 4 years, for adults there is not even a figure available.
@KatyElphinstone This is a bugbear of mine. There is no definition or description of autism (outside of autists' blogs), but only a list (often paraphrased, to disguise the appropriation) of diagnostic aids taken from DSM-5.
In fairness, autism is especially weird. 🤯
Yes, there is a team of researchers trying to bring through a 'centring the inner experience' diagnostic tool. I'm currently awaiting their permission to use their questions in my PhD, since it's still being piloted. I think they'll be up against the autism industrial complex.
@KatyElphinstone I was no trouble at school and got good grades, so teachers let things slide that they didn't allow other children. A lot of things.
One thing: Modern teaching in my country switches tasks ever 5-15 minutes to keep the pupils' attention, and the constant forced switching is the main factor why I developed anxiety. Even in at a school that actively worked against bullying and tried to let children be and express themselves.
I'm glad they gave you a break at school - as for the rest of what you've described here, I'm getting stressed just thinking about it!
1. They would provide help to strengthen our capacity to engage with our special interests and improve necessary skills rather than be focused on deficits, tho they would still be important to consider.
2. I actually like the theory of it being a movement disorder because of how my deficits are experienced. I can’t envision it being defined not by things that make it hard to do what I wish… autistic inertia gets in the way… and its not what most researchers focus on…
Me deciding what to focus:
1. The issues of movement. Repetitive self injurious motion, body refusing to move, body not expressing how you think you are, realize I actually am trying to do it right… brain signal for me to do it right, not doing it/ theory. And helping it…
2. Autistic Sleep disorders.
3. Sinus Inflammation
4. Real whole environment tests for accommodation and find what’s most helpful.
Researchers: what causes autism 🤪
1 is a lot of study and proving autistic inertia and what helps it. And pushing for ACTUAL help instead of what happens…
@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
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 💟
@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.
@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.
Absolutely this.
My son was no trouble to anyone but he was going downhill in a kind of landslide. Eventually, with me getting desperate, the school agreed to "support" him, but not in any of the ways that would've actually helped. A support staff sat with him in class.
After 2 weeks, he was thoughtful when falling asleep (he'd take up to 2 hours & I'd lie with him, never falling asleep before him), and asked me, "Mummy, does Ms. [...] sit with me in class to stop me being bad?"
He fell asleep but I was awake for hours. That was the night I knew I had to get him out of that place for good. He'd understood everything perfectly. He was meant to feel like he was the problem.
I still feel bad about the kids I couldn't help. I can hardly think on it.
Thanks. 🙏😊
Yes, and now my awareness has been brought to the plight of children but indeed humanity as a whole, I've got such a powerful compulsion to do something about it! I can't go out and be an activist (I would not be good at it and would burn out quickly)... so learning to write, and do research, seemed the way forward. This brain has a mission lol
I suspect you may perhaps be similar, in this regard, though forgive me for presuming.
…. 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.
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…
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*
@KatyElphinstone No-one *does* care! 😢 The problem is it's always n. 1, and almost never n. 2. 😭
"Who cares, wins"
@KatyElphinstone This is very thoughtful and you are 100% on all counts. :)
Speaking only from my family’s experience (no data here 😜)…
The squeaky wheel gets the grease. So
In the school environment, the quiet kids and the “high-masking” kids fly under the radar — until social or academic demands increase, and then they suddenly don’t. (This applies not just to autism.)
From a systems point of view, the kids who are squeakier wheels earlier (visible autistic traits) are “easier” as school systems identify them sooner. There are processes for unwanted (to the school) behavior. (These are often not good processes, helpful to the child, but they are processes! 🤦♂️)
Super-maskers are “harder” cases (systemically) as they appear great (meeting behavioral expectations) until suddenly they are stimming or eloping or melting down etc “out of nowhere”. The system flails.
I say “they” but am speaking just for my family and friends’ lived experience and not generalizing to all autistic people everywhere. 😅
@junklight @KatyElphinstone I am sorry! 😅
Part 2 of my rant is:
The more compliant (masking) the child, the less likely they are to get some sort of intervention (could be “help” but not always), and the more likely they are to be blamed for their own undesirable (to the school) feelings and behaviors, then treated with disciplinary measures because they are perceived as suddenly “choosing” to be non -compliant: disruptive, “scary,” “weird”. I know many kids personally who are “high-maskers” (would like a better term for this!) who suddenly can’t do it anymore and the teachers and other kids get freaked out, understandably, as the rapid shift in behavior is confusing and unexpected.
This theory just jelled now; feel free to tell me I’m wrong or block me as I’ve probably offended someone whose experience doesn’t align with mine etc 😅
This tallies with my experience. I mask and cope well until (according to those around me) I don't. That
Is the point I crash and people think I am exaggerating because whatever tipped me over the edge doesn't look that bad to them.
The straw that broke the camels back.
When I flip, it does always seem to be over the tiniest thing. But it's all accumulative.
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