Autism and everybody being an expert

[BerriTerri]

I can’t say I was warm to the diagnostic process, I certainly didn’t ask for one but we wound up with a diagnosis but and we’ve muddled through.

Three years on there’s still a few people who are obsessed by the are they/ aren’t they!

One woman apparently works with children, I presume young and severe, and watches like she’s doing a professional observation and interrupts other topics with comment like ‘look, eye contact to thank someone!’. I’ve spent time teaching dd skills and she’s learnt some. Yes. I end up wanting to slap her after half an hour. I’ve asked her to stop a few times and I avoid her now but occasionally at something like a party we’ll end up near each other. Dd has no LD and can learn skills and is getting bigger so isn’t non verbal or hiding under tables anymore...

Another likes to tell people that dd doesn’t have it for xxx reason. As in new mutual friends I wouldn’t have told at all.

It does my nut in. There’s nothing else that people get so damn nosey over. I haven’t even told people in the last few years as it bugs me that much

We are all on the spectrum if we all have the triad of impairments necessary for diagnosis. Don't have that triad? Then you are not fucking 'a little bit autistic'.

Honestly OP, YANBU.

www.ncbi.nlm.nih.gov/pmc/articles/PMC5688947/

I have three children with autism, I have trouble enough understanding them, I’d not be naive enough to think I understand other children better than their parents.

Some people just need to get to fuck with their opinions, becuse most of it is utter bollocks.

I work with children with autism, I am yet to meet two children who are the same or show exactly the same signs. I worked with one child that made almost constant eye contact, to the point it was actually a bit uncomfortable, others who made normal eye contact and some who make none at all. Some who have huge, extremely violent meltdowns regularly, others who just go quiet. Some who cannot stay still ever and rock constantly and others who are like statues half the time. Its such a broad spectrum that anyone who acts like the people you have mentioned clearly hasn't got a clue.

I'm working in a mainstream school and I've had a few staff who don't know what they are talking about offer opinions and try being nosey about the child I support, worst of all is supply staff, and it makes me really angry, they aren't even my child, it must be even worse when its your child they are talking about its not ok to question any other diagnosis so why do people think its ok with autism?

Ive had multiple professionsl tell me they are experts as they have a degree in autism. Doesnt mean you know my child or whats best for him. And "he doesnt look autistic" just smile and nod.

@AornisHades did you correct that person ?

"Oh but she's always so polite, she's a dream child, she's a model student." Yes she is. And then she looses her shit when she gets home, and screams for hours, exhausted by the act she has to put on all day.

mild autism is the thing that gets my piss boiling. My son has Aspergers. There is nothing mild about it when his anxiety is off the scale and he has trashed my house and bitten and punched me.
Aspergers may not always be as obvious but there is nothing fucking mild about it.

my aunts cousins child has autism so I understand....

no you fucking don't.

not all autism is the same

observing autism from the outside is not the same as living it and the family living it. every.fucking.day.

not fucking you that is getting punched ,kicked and sworn at daily.

I say things like 'i understand' as I have a sibling (or two) on the spectrum. I have literally never been asked by any parent what it is like growing up as the sibling Which is lucky. But we do bond over shared experiences of how it affects our lives. There is overlap, I feel. And after all, I have 45 years of experience ... them, their friends, their friends friends, their schoolmates. Even specialists have less! Your average parent on mn, a lot less in terms of years. But we the siblings still get lumbered with all the admin, paperwork, safeguarding, chasing. Except of course for ageing relations. No school. No support. Worsening comobidities. Lucky us. Sorry, Thankfuck if it comes across as annoying if I said something like 'i understand'.

@Scifii101 yes, sort of. Slightly tricky as autistic myself and struggle on the phone. Managed a "Well, no they aren't. It's about impairments and..." trailed off as she started talking about dd's appointment

Oh yes.

“But he can’t be autistic, he can talk”
“He doesn’t look autistic”
“Well, we’re all on the spectrum, aren’t we?”

And my personal low from a family member:
“We thought our PFB might be autistic, but we took PFB to lots of toddler groups and made them socialise, and now they’re completely normal! Maybe you should have done that!”

Or maybe, just maybe, your PFB never had autism in the first place, helpful family member?

When I was being diagnosed bipolar they were pretty set on diagnosing me with autism too, I agree with them. It kind of died down after that because my meds stopped me trying to kill myself so I never reached a full diagnosis.

Mentioned it to a few friends for support.
“You’re not autistic”
“Lol if you’re autistic I am too”
“Noooo don’t be silly, don’t worry about it”
“We’re all a bit autistic” (that one gives me rage)

I stopped telling people, stopped talking about it. Shame isn’t it?

This is one of the key reasons we haven’t yet told PIL that DS1 has autism, diagnosed in the summer. My Mum, best friend and work know but no one else. It’s pretty isolating but I just can’t face the unhelpful comments.

Argh, totally agree with this. My 12 year old son has aspergers syndrome and I'm always being told that he doesn't have "proper autism" and how lucky I am that he can talk and doesn't have learning difficulties. I wouldn't mind so much if it was parents of children who have non verbal autism and learning difficulties saying this but it isn't, it's parents of children who are NT.I

My 10 year old has severe hypermobility syndrome and uses a wheelchair a lot of the time. So many people think they understand because they know someone who is "a bit bendy".

Then there are the people who say "it's all right for some" or that I'm "doing it for the money" or something when I mention that either of them has been to an event for children with special needs. I'm not talking about an all expenses paid trip to Disneyland, just an inclusive youth group or something like that. I don't think some people realise how hard it is doing even the most basic thing like going to the cinema or school fete when you have to take half a tonne of equipment with you and worry how you're going to manage if the 12 year old has a meltdown because the bus driver won't let you on with a wheelchair because there's 2 buggies in the wheelchair space and then the next bus driver won't let you on because the 12 year old is crying, the 10 year old is furious and humiliated and you wish you'd never bothered leaving the house.

My DS has Aspergers, to anyone walking past he looks like every other 14 year old. They never see the meltdowns, the nights he won't sleep, when his anxiety levels are through the roof, when he is obsessed by an interest & never stops thinking about it, when he comes home from school & the first thing he does is getting his cuddly dog who has been his constant companion since he was tiny, he talks through this dog at home & often the dog "tells" me if he has had a bad day or is worried about something.

They don't see any of this because my son puts a front on when he is away from home, he bottles everything else up until he gets home & feels safe to be himself.

I completely agree OK which is why I hardly mention my DD's autism. I want people to see her not the condition. A fellow school mum with an autistic son has branded herself the 'poster mum' for autism. Literally branded - she has a tattoo of an autism jigsaw piece.
Not my style I'm afraid.

I'm sorry that so many are struggling with this but perhaps you could use this forum to suggest how you might want strangers/friends/family to respond.

My feeling is that the majority are quick to criticise people with no experience or understanding of your child's condition and how you live with it, but before you were in that situation, did you know how to approach it with others?

It can be difficult for people to know how to say the 'right' thing because the 'right' thing is so different for each individual and inevitably they will end up saying the wrong thing and causing offence.

What kind of response is appropriate?

I’m dyslexic and once a colleague got excited at how good my writing was.. “oh wow you write and read really well.” Lol yes I can

That is very thoughtless and patronising of this lady. I’d be inclined to take her aside and explain you are sure she means well but could she please stop.

Does anyone else get a bit tired with the "well what do you want people to do" questions?

Absolutely and sincerely no offence intended at you Souper, but it always pops up on these threads.

One problem is that I feel like it's really really obvious what you should do (as I'm autistic) so it's also hard to spell it out. Another is that it doesn't fit easily into a soundbite of what's "correct" to say, any more than there's an exact thing to say to any other type of person in any situation.

Mostly be nice, don't judge and be accepting; listen and respond to what's in front of you.

Whatever you do, don't panic internally and think that you have to come up with solutions or be an expert or distract away the "problem" in front of you. Just listen and accept and if you can, offer help.

don't offer advice. especially if it starts with "you ought to..." or "why don't you just..."

advice might be welcome further into a conversation if you have listened first, and you phrase it in such a way that you understand that not all children with a condition or disability are the same,

sometimes I have had a nugget of information from someone,

TheDarkPassenger yes, some people react the same way to everything - 'triple heart bypass? Don't worry about it' (a literal example from this week). I mean, it is good not to worry, but it's nice to feel heard and worries understood as well!

@TheDarkPassenger

It’s sadly not uncommon your experience. My sister was diagnosed with bpd when she was sectioned, I HEARD them tell her she was most likely autistic. The same doctor then claimed they didn’t say that when she went home and it was impossible to follow up. I’m so glad I was present to hear it, or the gaslighting would be terrible for her mental health.

At school, being female, she was diagnosed with auditory processing difficulties, LD, social communication needs, speech delay and was under the behaviour outreach team. Not hard to join the dots

@S0upertrooper

I guess just treat it like any other need.

E.g
‘Dd has asthma’
‘Oh... will she be ok doing....?’
Not
‘Well I see she’s playing sport right now, she can’t have asthma!’

If you have experience maybe

‘Oh ds has asthma, but most the year he’s ok with just a blue inhaler. How’s it for dd?’

Just like any other condition there’s no need to assume an expert position, offer pop diagnosis or guess the diagnosis. I’d look crazy if I walked round saying ‘I think dd has asthma, She keeps coughing!’ if I didn’t go to a doctor or ‘have you tried stopping the inhalers and trying hawthorn tea instead?’

I think for 99% of the time people just need to step back and thing ‘would I say this for any other diagnosis a parent shared?’

Just kind of accept it, move forward in the conversation and carry on asking anything relevant. Eg if you’re inviting them round to play ‘is there anything I need to know?’

I just remind people that autism is a rainbow - lots of different colours make up different combinations.

If got an asd boy who makes sliding eye contact, very tactile (adores cuddles), loves a chat etc so according to mil he can't be autistic (sigh). He's a great masker until he ends up hiding under a table stressed out - of course then he's just badly behaved