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 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. 🤯