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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@pathfinder

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?"

@pathfinder

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.

@pathfinder

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.