Undermining comments about autism

[Opal93]

I am becoming increasingly upset with more and more ridiculous comments about autism. I know for a long time people didn’t understand it but surely there’s enough on TV and the internet for people to be at least a little bit more informed? Here are a few of the most ridiculous comments, ranging from old to young people. I know none of them come from malice but I do think to myself “SERIOUSLY??” And often don’t know how to respond. “ he doesn’t look autistic.” “At least it’s not a disability” “at least it’s not Down’s syndrome” “did you find out at your scan and were you offered a termination?” “He’s not that bad” “at least he might be a genius” “you shouldn’t have another baby what if it is like him” “he just needs more discipline”

@GraduallyWatermelon

*autisitics are, on average, more intelligent than neurotypicals

Absolutely. Also over-represented in the professions, esp medicine. (We now realize that includes my DH!)*

This isn't true. 50-70% of autistic people also have a learning/intellectual disability and ignoring this population does a huge disservice to them.

Exactly. There are plenty of those who completely ignore the experience of those most severely impacted who don’t have a voice or the ability to express their thoughts.

@BuggerBognor it's certainly going to be harder to find the balance. I think it's important that autistic kids don't hear "he can't help it, he's autistic." When they do something that isn't socially acceptable. It's just setting them up for low expectations of themself and a sense of entitlement. Autistics aren't special, just different.

@GraduallyWatermelon

*autisitics are, on average, more intelligent than neurotypicals

Absolutely. Also over-represented in the professions, esp medicine. (We now realize that includes my DH!)*

This isn't true. 50-70% of autistic people also have a learning/intellectual disability and ignoring this population does a huge disservice to them.

yes, my DS has an intellectual disability (he is about 5 years behind his chronological age). He is at an indie school and they are really good, but I think in the fullness of time it will not be right for him as he is just being left behind and it is becoming more obvious.

But people often assume savant-like or secret genius. I'd settle for just knowing he is going to be able to get through life without too much nxiety and distress tbh.

One of my daughter's friends is autistic and it baffles me because she does seem completely fine and normal. I know you're not supposed to say that, so I don't, but I do wonder what her disability is exactly. I mean, I believe that she is, but it's hard to understand how it affects people when you can't see any signs at all.

I can almost guarantee that a shitload of ongoing hard work, intervention, and tailored support will have taken place

[quote Tinydinosaur]@BuggerBognor it's certainly going to be harder to find the balance. I think it's important that autistic kids don't hear "he can't help it, he's autistic." When they do something that isn't socially acceptable. It's just setting them up for low expectations of themself and a sense of entitlement. Autistics aren't special, just different.[/quote]
So what you do propose us parents of profoundly autistic children do when they don’t conform to social norms they have no idea exist?

I think it's important that autistic kids don't hear "he can't help it, he's autistic." When they do something that isn't socially acceptable. It's just setting them up for low expectations of themself and a sense of entitlement

In what universe is it considered entitled for a disabled person to display behaviour consistent with their disability!?

@FoxyTheFox

One of my daughter's friends is autistic and it baffles me because she does seem completely fine and normal. I know you're not supposed to say that, so I don't, but I do wonder what her disability is exactly. I mean, I believe that she is, but it's hard to understand how it affects people when you can't see any signs at all.

I can almost guarantee that a shitload of ongoing hard work, intervention, and tailored support will have taken place

yes, there is a meme that went around lately that said 'I do not have mild autism, you just experience my autism mildly'. I liked that. My Ds can mask for certain situations, but it exhausts him, takes a huge amount of preparation (we rehearse how to appropriately behave before events- even just going to the supermarket) for example. So other people mostly (not always!!) see him on a fairly even keel. The private impact and aftermath can be carnage.

Yes to all in your post, and Can I add ‘everyone is a little bit autistic’ to the list of ridiculous things I’ve heard?
Completely negates all the struggles we’ve gone through since ds was 13 months, like we’re making a big deal over nothing!

I have huge issues with the way autism is portrayed in the media tbh, when characters are autistic they are 9/10 on the high functioning end of the spectrum, which is great for raising awareness that those people are autistic too...but completely ignores the severe end which is an entirely different situation for families.
It’s why I’m a bit about the push in that there is nothing wrong with being autistic and society just needs to accept it and all will be fine, and how dare people wish for a cure...well for some people who have to deal with the reality of a child who will never develop past being 2 years old mentally but is a 25 year old man that’s hard, and I’m sure some would kill for a cure so their child isn’t suffering.
Even my children who are relatively high functioning, if I could cure their anxiety, or their inability to sleep, or the upset that happens when they can’t communicate to make friends, of course I would.

I confess I truly am also lost in the 'austistic/with autism' debate. I usually just say 'DS has autism or DS has ASD' but that's probably wrong somewhere too.

@OwlBeThere

I have huge issues with the way autism is portrayed in the media tbh, when characters are autistic they are 9/10 on the high functioning end of the spectrum, which is great for raising awareness that those people are autistic too...but completely ignores the severe end which is an entirely different situation for families. It’s why I’m a bit about the push in that there is nothing wrong with being autistic and society just needs to accept it and all will be fine, and how dare people wish for a cure...well for some people who have to deal with the reality of a child who will never develop past being 2 years old mentally but is a 25 year old man that’s hard, and I’m sure some would kill for a cure so their child isn’t suffering. Even my children who are relatively high functioning, if I could cure their anxiety, or their inability to sleep, or the upset that happens when they can’t communicate to make friends, of course I would.

Oh yes. And when the friends they have had for years are now 12 year olds while your DS is to all intents aged 7 or 8 and he has no idea why they are pulling away from him, he just knows it hurts.

@BlueLobelia totally...it also doesn’t help that terminology in different countries differs.
On a different topic but along the same lines is the word ‘coloured’ is highly offensive in the US a d here, but in South Africa it’s a freely used term with a specific meaning that people are quite proud of being.

So, it’s a minefield when using terms. I also tend to stick with ‘dd has autism’. I don’t like when people say ‘xxx is ASD’ or ‘xxx is special needs’ because you wouldn’t say ‘xxx is diabetes/cancer’

Yes @BlueLobelia most of my sons friends have out matured him, though he has a hard core few who accept him regardless which i love. They even accept he doesn’t want to see/talk to them outside of school because he doesn’t see the point ‘I saw them all day, why do I want to see them again?’

@OwlBeThere

I have huge issues with the way autism is portrayed in the media tbh, when characters are autistic they are 9/10 on the high functioning end of the spectrum, which is great for raising awareness that those people are autistic too...but completely ignores the severe end which is an entirely different situation for families. It’s why I’m a bit about the push in that there is nothing wrong with being autistic and society just needs to accept it and all will be fine, and how dare people wish for a cure...well for some people who have to deal with the reality of a child who will never develop past being 2 years old mentally but is a 25 year old man that’s hard, and I’m sure some would kill for a cure so their child isn’t suffering. Even my children who are relatively high functioning, if I could cure their anxiety, or their inability to sleep, or the upset that happens when they can’t communicate to make friends, of course I would.

Indeed. It seems to me there are plenty of autism advocates who would rather children like mine (delayed and non verbal but no evidence of impaired intelligence) didn’t exist as it doesn’t fit the narrative that autism is not a disability, you’re only delayed if you have additional LDs etc. All the ways that kids usually learn are inaccessible to my boys so of course they are delayed - everything they can do they’ve learnt themselves through trial and error because they are highly motivated. Everything else doesn’t get learned.

I think there’s a reasonable chance I’m autistic myself but that doesn’t mean I fundamentally understand what it’s like for people like my children - I definitely have severe social anxiety, whereas they have no such thing, they are mainly oblivious to others. Never seen either display any sign of anxiety. It may as well be a different condition.

What I will not do is go around saying I’m autistic even though I haven’t gotten a diagnosis and thinking that makes me able to speak for those who are severely impaired by their autism.

@FoxyTheFox

I think it's important that autistic kids don't hear "he can't help it, he's autistic." When they do something that isn't socially acceptable. It's just setting them up for low expectations of themself and a sense of entitlement

In what universe is it considered entitled for a disabled person to display behaviour consistent with their disability!?

Yes autism comes on a huge spectrum. And once again, parents of profoundly autisitic children who also have other disabilities are getting pissed off because autistic people ALSO have an opinion on autism. So I will hide this page after this message. Because I'm so sick of being told by parents of autistic children who have other disabilities aswell as autism that I know nothing about living with autism.

I don't know any autistics that prefer "people who have autism" just like I don't know any diabetics that prefer "people who have diabetes". I know a lot of autistics, not many diabetics.

If your profoundly autistic child with other disabilities is never going to be able to live even semi independently then what I said is irrelevant, it shouldn't need saying, you know it, I know it, but for the majority of autistics, semi or fully independent living is fully on the cards. And if you want you child to live independently, then "he can't help it, he's autistic" will not help them.

By entitled I mean the autistics I know who are fully capable of independently getting to their own birthday celebrations on time, but turn up 45 minutes late to others saying "I know, what am I like" and laughing. Who are fully capable of setting up a direct debit for something they want, but can't set up a direct debit for their electric so their parents have to do it. That are fully capable of looking after their phone, but break your laptop that they borrow. All while telling you that they're autistic, it can't be helped. It can be helped, they are choosing to use their autism as an excuse for treating people poorly because their parents taught them they could and it holds them back.
And it's people like that, that make others say the things that OP is complaining about.

@BuggerBognor

I completely understand, and it's not specifically about your comments but there's so much historical "othering" of people with learning/intellectual disabilities in the autistic community and its not helpful across the board. (Just FYI, autism isn't a learning disability)

People with Aspergers/HFA/atypical autism report feeling frustrated at being "lumped in" with those who have intellectual/learning disabilities; you don't get this view with any other condition/disability/disorder. And verbal, more cognitively able people can "shout louder" and get themselves heard, in this case above an already significantly disadvantaged group.

Many people with autism don't have special skills or talents. They won't have or develop deep or intense focus like your DS. Yours and your DSs experiences are always important but please remember "if you've met one person with autism, you've met one person with autism".

Most people in the neurotypical world do not understand anything about autism or childhood disabilities. They are often ignorant about what this means on a practical level. I wouldn't take it personally.

If I'm told someone's child has autism, I'll just ask how does it affect them on a day to day basis, or say nothing if the conversation isn't going into children.

It's the staring. As if a little boy who looks just like any other little boy is abhorrent for behaving in an unusual way. Staring constantly, even at bloody hospital appointments, even in the neurology waiting area (epilepsy too). The staring is often coupled with ' If he was mine...' - go on, what would you do, then? Or 'You can't hit your mum, now' - how on Earth is that going to help?. Or ' He needs a good talking to' - pray tell what would you talk about?

I could commit murder some days.

@Puffalicious Oh god yes, the fucking staring! Because of lockdown we've not missed that little gem

[quote notagainmummy]@Puffalicious Oh god yes, the fucking staring! Because of lockdown we've not missed that little gem [/quote]
Silver linings notagainmummy

Or the kids in the street/ playground who avoid him because they just don't get that he's great but a bit different (the kids don't get him because the parents don't get him or worry their kids will catch "weird ").

Totally agree. My son has ADHD and is still under assessment for ASD.

I think the most frustrating is when people say he just needs a good slap/ telling off etc. Or those who seem to think that any parent can just rock up at the doctors, say their child is hard work and walk away with an ADHD diagnosis. Then there's the people who don't even believe it exists, it's just bad parenting/ naughty child/ child must be suffering from abuse etc.

@GraduallyWatermelon

*autisitics are, on average, more intelligent than neurotypicals

Absolutely. Also over-represented in the professions, esp medicine. (We now realize that includes my DH!)*

This isn't true. 50-70% of autistic people also have a learning/intellectual disability and ignoring this population does a huge disservice to them.

This