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Here's a message for parents: If your kid is autistic *TELL THEM*.

I get so sad reading stories of people who struggled thinking they were morally broken until they found out they were different, only to discover that others had the word that explained things, but didn't want to share it.

Nobody catches autism by being told they are autistic. It doesn't make you more autistic. It just lets you know you are different, not defective.
my missus spends a big chunk of her time doing paediatric ADOS assessments. The range of parental responses is surreal from ‘my child cannot possibly be #autistic’ thru to ‘my child is definitely autistic’ - often entirely disassociated from the reality. The accompanying parental actions can be deeply unhelpful and even harmful.
Some years ago (before my DX but after my spouse's) I brought up to my sister that my oldest nephew might be autistic. She firmly told me that there was "nothing wrong" with him.

(thankfully at this point I think she's realised that she wasn't being ... appropriate about it, and while my nephew hasn't had an evaluation, it's because while he agrees with my assessment that he's probably autistic ... he doesn't want to deal with the "official" right now)

JimmyB (he/him) hat dies geteilt

My son (age 23, not autistic, probably ADHD like me) seems to have a friendship group who nearly all are autistic. However, several do not want a DX because of the implications for overseas travel and work.

Makes complete sense to me.

@joelle
Yeah, that's why I care more to make sure that he (and his brother and cousins) are aware that they're not broken, and maybe some coping mechanisms, than the piece of paper saying they're autistic.

We're not physically in the same space often (1-2 a year), but during that time we talk a lot. And not uncommonly we talk about everything and nothing (which has led to me sharing stories from my childhood and them going "... how did no one realise you were autistic?" <.<)

JimmyB (he/him) hat dies geteilt

Right! The 'not broken' piece is so important for autistic kids (and adults probably). Different, for sure. In need of mechanisms for dealing with an NT world - definitely. Broken? Not at all.
Yeah, that's one of two things that I talk about *a lot*

1) I lived up until I was 40 thinking that I was "broken", because everyone else *obviously* have the same challenges I do, and *they* can handle it! (no ... no they don't. Most *really* don't <.<)

2) I'm still not fully sure who I am underneath the mask, and I've been working on that since '22 ... I've been "playing a role" my entire life, without ever even *realising* it, and early on I had this deepseated fear that ... what if I unmask fully and realise that there's nothing left? That the true me died years ago? At this point I'm pretty sure that's not true (part of my core self is wanting to be kind and do least harm--not to people-please/avoid "offense" but to avoid *hurting* others) but it's still a scary ghost <.<

JimmyB (he/him) hat dies geteilt

I'veheard so much about girls masking their autism really successfully.

My big sis is seeking a DX right now - aged 57. She's convinced but the challenge is the DX criteria are clear: you cannot acquire autism. You are born autistic. However, in a world where girls mask, the DX process doesn't work brilliantly, because parents will say, rightly, that their daughter didn't show autistic traits as a child.

So for her this is a problem: she presented 100% NT until later in life.
the drs (and parents? <.<) she's dealing with are ableist assholes.

I can 100% say that she didn't present allistic, and I don't even know her ;)

But yeah. There's *so* much stereotypes going around. And too many refuse to recognise that autism isn't "what others can perceive". Yes, part of it can occasionally be perceived by others ... but it's what it looks like from *our side* that really matters.

Part of the masking-for-girls also splashes onto other groups, for similar reasons: we're raised (whether intentionally or not) to handle other people's (the "more important ones") feelings. Which means making *us* less, and smaller, and do what makes others feel comfortable, even if we suffer for it (now to be clear: I'm not saying that those raised as white boys *never* end up being taught those lessons, just that it's a different thing for people perceived as girls, or in other ways "marginalized").

JimmyB (he/him) hat dies geteilt

Well in my sis's case, she has multiple, serious mental health issues too, so working out what is really going on, is very difficult. In her case, she really does want a diagnosis whether it is accurate or not, because it helps her cope with the world.

I don't think that's a massive problem TBH, though if she is not autistic (and I've no idea) then misdiagnosis as a kind of support won't really do too much for her and isn't great for people who are autistic.

It's really difficult.
Yeah, autism is hard enough to find with "just" the average trauma that we live with due to *gestures at the world in general* ... add other things and it gets even murkier!

And I'd say that whether misdiagnosis is a problem ... Well, that depends *a lot*. If she has, say, five of the seven traits, then honestly? Any coping mechanisms and whatnots that work for either of those five traits *will likely work for her*.

If she's on the fediverse, tell her to follow the hashtag and the group. Because even if she *isn't* autistic, some of our tips & tricks might help, if she's got particular issues.

JimmyB (he/him) hat dies geteilt

Yes! Exactly. I don't think it's such a big problem with someone with her issues to have this one wrong, compared with the trauma of daily living.

Misdiagnosis? Well - suboptimal maybe, but not the hill to die on. And actually - she might well be autistic so...fine! She definitely thinks she is and just respecting that, helps her. So this is a conversation I would never have with her - because it just wouldn't help. If she says she's autistic - I don't argue. Fine.
I only got my diagnosis by cutting my mother out the diagnostic process. My older sister did mine for the psychiatric services but hasn’t gone down that route herself. I was referred by my GP, seen by a psychiatrist in 6 weeks and on medication for my ADHD the week after. The GP was within a whisker of asking for me to be hospitalised (it could have been short cycle bipolar) but my son had already been through his auADHD diagnosis with me and as soon as I read that sheet I knew. So I was very willing. I am not going to say it’s been easy but it is definitely the right diagnosis for me. I’m not prescriptive about what others choose to do. I’m the only person inside me, so I’m just trying to stay alive and live a life of value to me. That, for me, includes empathy for my sister who has a range of crap to deal with of her own (including living 5 minutes drive from mum).

JimmyB (he/him) hat dies geteilt

"(including living 5 minutes drive from mum)"

😀

Exactly: each of us has to manage a path, and we need empathy and support sometimes to stay on it.

@melindrea
I hear you. Go well, friend, I need to start my week. 🤗

JimmyB (he/him) hat dies geteilt

Also very different dynamic - I’d be much more supportive of the individual who is making a choice about their own need for a a diagnosis compared to a person with parents knowing and lying or just being in complete denial.

JimmyB (he/him) hat dies geteilt

Well... the problem is, I think we all end up where we end up as a result of a complex and un-navigable set of genes and personal experiences. So where one seems able to take control of their situation, another isn't. But looking at why that is, both paths are understandable.

Likewise parents who cannot accept their child for who they are: they too are products of complex conditioning. All we can do is educate I suppose.

@melindrea
@joelle
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Educate and empathise. Also (as in the case of my relationship with my neurodivergence denying mother) use a little distance to stay sane. 🥰

JimmyB (he/him) hat dies geteilt

100% this.

My old mum continuing to insist that 'thousands of UK primary school teachers are being fired because they refuse to teach kids that they can be trans' doesn't make me want to go see or talk to her much.

Likewise the 'everyone wants a diagnosis today'.

Hmmm...

But again. Horrible though she is - and my god she is - she's also a product of a horrific environment so had no chance either.

@melindrea @joelle
Oh if we want to enter the pit of my mother’s opinions there’s a hydra down there. But usually I don’t. She taught me masking. I can use it now to have a sort-of normal relationship as long as I don’t phone too often and see her around 3 times a year. Mask up, do Mum, come home, collapse and repeat. I do miss my dad though. Very much. He was the balance, and now he’s gone she is a Catherine wheel of unpredictable opinions.
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JimmyB (he/him) hat dies geteilt

How similar. I have to interact sadly a lot more than 3 times a year but it is exceptionally draining.

And yes - Dad was the balance. They were both fanatically religious (I grew up in an RC cult) but Dadmellowed a lot in his old age and was lovely. Mum on the other hand... Her latest wheeze is that she's decided she wants to move into an old people's home (run by a local church) and therefore needs to clear her house. In advance.

Not doing it Mum.

@melindrea @joelle
Stay strong, stay sane. That’s my mantra! All sounds horribly familiar yet also unique and individual.

JimmyB (he/him) hat dies geteilt

@actuallyautistic I agree. Apparently my doctor told my mum he suspected I had Aspergers (as it was then) when I was fifteen. She kept that to herself and maintained I had all these issues because someone had put black magic on me.

It wasn't until my late twenties when I learnt about Aspergers properly. If I had known at fifteen, I could have got my diagnosis, I could have got support (maybe) and at least not spent another 12 years hating myself and wondering why I just couldn't fix myself and be like the other women.

#autism #actuallyautistic #neurodivergence
@actuallyautistic
...we don't know very much today! But yes, back in the 70s, and before, our attitudes were ... shamefully primitive.

If I had been diagnosed #AuDHD in the 50s, when I was born, I would've been put quietly away in an institution, and never seen in normal society. I would have been 'disappeared'. 😭
Certainly would end up in a 'special school', at the very least.
Seems to me that Regressive politicians want to go back to those days. Shut away, out of their sight. @alexadeswift @SilverArrows @actuallyautistic @joelle
@actuallyautistic "Special school" Neither special in any positive sense of the word, nor really even a school.
Due to speach and reading delay when I arrived at school, not to mention lack of eye contact and not even trying to interact with anyone. I avoided that destination by the skin of my teeth. Back then in the 60's if they'd actually tested me for autism, rather than just thinking that I was terminally stupid, I wouldn't have.
@actuallyautistic
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I managed to avoid it too. I mean, is it free when they put you away? We weren’t the sort of family could afford anything.
In Australia, a
Special School was daycare for children who had physical and intellectual disabilities which precluded them from attending 'mainstream' education. We also had The Spastic Centre for children with Cerebral Palsy. Schools for The Deaf, and for The Blind.
But the ones that still get the most funding, are the schools for the priviledged, the elite, and the ones most likely to include future eugenicist politicians. @pathfinder @PatternChaser @alexadeswift @SilverArrows @actuallyautistic @joelle
@actuallyautistic I was sent to "Special School" and the overriding memory of have of it is being physically dragged out of class, along the floor, by male teachers while have autistic meltdowns.

It was a church school with mandatory services every day of the week.
@actuallyautistic
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Yeah, same in this colony too, Canada, I guess.
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I don't wish I was simply stored or institutionalized, but I do wish there was something between institutionalized and punted out into the world with a "good luck." I'm glad they didn't send me away, but I wish they didn't send me away alone and all in adulthood.
In my view, authorities don't really have any better idea of how to deal with 'difference' now, than they did then - but with far less excuse for no knowing. @pathfinder @PatternChaser @alexadeswift @SilverArrows @actuallyautistic @joelle