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”

I don't think society functions very well if everything is none of my ( the collective my) business. I will happily tell the kids smoking in the park to leave for example. Should I just leave them be, not call 101 ?

And no I'm not "one of those." Putting words into people's mouths doesn't help this discussion. I understand why people might be defensive, you love your children. I have a DS with additional needs myself. But I am a believer in discipline, not hitting or shouting and not locking children in their rooms. But knowing the correct way to behave, manners, boundaries.

Back in the late 90s when I first had to deal with raising a child with autism it was far worse. The movie Rain Man was most peoples only knowledge of autism

Oh yes Rain Man has a lot to answer for and why the uneducated still think everyone with autism has some outstanding talent.

@cheeseandpicklesandie

I don't think society functions very well if everything is none of my ( the collective my) business. I will happily tell the kids smoking in the park to leave for example. Should I just leave them be, not call 101 ?

And no I'm not "one of those." Putting words into people's mouths doesn't help this discussion. I understand why people might be defensive, you love your children. I have a DS with additional needs myself. But I am a believer in discipline, not hitting or shouting and not locking children in their rooms. But knowing the correct way to behave, manners, boundaries.

Autism is a spectrum though what works for one child won't work for another particularly ,when there are other things at play ,learning disabilities,ADHD etc .

I am British. I am female. I am (or was) a professional. I am a wife. I am a mother. I have autism. I am not ‘an autistic’. That is not my label. I am a lot of other things. That is my being. Autism is not a condition, it does not define who I am. It is a part of the component that makes up me. I have serious issues with people who talk about ‘autistics’ as if that is a label to be worn that sets me apart from other people. If you met me you would never know and you would never know the struggles that I have had over the years to present this face of ‘normality’.

OP, as an adult who has autism I totally understand where you are coming from. What I want to do is to give hope to parents who worry about their children and say that most of us are ok in the end. To the rest of you please know that we are exactly the same as you, with the same hopes, dreams, and aspirations, but we are just wired a little differently.

I saw a fantastic reply to the 'we're all a little bit on the spectrum somewhere' comment.

It was along the lines of, if someone says that to you - compliment them on their lovely pink jumper - when they correct you and say no, it's green, you reply 'well it's all on the colour spectrum so it's all the same'.

@cheeseandpicklesandie

I don't think society functions very well if everything is none of my ( the collective my) business. I will happily tell the kids smoking in the park to leave for example. Should I just leave them be, not call 101 ?

And no I'm not "one of those." Putting words into people's mouths doesn't help this discussion. I understand why people might be defensive, you love your children. I have a DS with additional needs myself. But I am a believer in discipline, not hitting or shouting and not locking children in their rooms. But knowing the correct way to behave, manners, boundaries.

Maybe, just maybe, your friend knows more about what works with her autistic child than you do.

@cheeseandpicklesandie

I don't think society functions very well if everything is none of my ( the collective my) business. I will happily tell the kids smoking in the park to leave for example. Should I just leave them be, not call 101 ?

And no I'm not "one of those." Putting words into people's mouths doesn't help this discussion. I understand why people might be defensive, you love your children. I have a DS with additional needs myself. But I am a believer in discipline, not hitting or shouting and not locking children in their rooms. But knowing the correct way to behave, manners, boundaries.

Please do explain to me how I teach my children “the correct way to behave, manners, boundaries”

They don’t understand words.
They don’t respond to being told off, they don’t notice a harsh tone.
They don’t copy what others do.
They have no concept of normal behaviour or even of behaviour.

This is not me being defensive - my children are fortunately not aggressive, and generally well behaved. But they’ll pick up anything off the floor and eat it, they’ll run towards people and want their food and drink or the toy they are playing with (they have no concept of things being theirs or not theirs).

Your assumption that autistic children are just naughty is utterly untrue.

Please do tell me how I teach them the correct way to behave, let alone manners.

And trying to justify your interest in something that’s absolutely not your business or place by citing civil responsibility is grim. The professionals decide whether it’s autism or behavioural issues due to lack of boundaries, they are the ones best place to do this and have the relevant information and expertise. What you see as a parent giving into their child’s behaviour is a parent who has learned the best way to handle things for her child and everyone around them. A meltdown is not something you can resolve with discipline.

I wouldn’t dream of telling children smoking in the park to leave. Why is that a good thing to do?

@Happyadventurer I used to be very keen on people first language. I don’t feel so strongly about it now. I’m glad you have achieved so much but you must surely know that only a very small percentage of people who have a diagnosis of autism/asd will ever be able to do the things you list?

The problem is how do you know who has autism and who generally does need more discipline? I have a friends with son with an8 year old ASD and she gives in to everything in a preventative way, she will do anything to avoid a tantrum as could lead to a meltdown. I don't live her life, but surely consistent boundaries are important even when out?

You perhaps need to have a read up on the ‘low arousal’ approach to Autism by Andrew McDonnell.

Sorry that made me smile ,My son stole a lolly out of another child's mouth🤷 ok he's only elevan it gets harder to explain as they get older

As a family we still talk about the time a woman at the next table to us had her burger pinched when it was put down to her.

I have the disorder formerly known as Asperger’s with depression and anxiety. What bothers me are the “anti-cure” high functioning autistic who argue for neurodiversity. My autism shuts me off from successful friendships, the ability to work well with others, being in crowds, having children, and other things. I would happily take a cure. Many parents of autistic children would also want a cure if available. It’s hard to be happier than your saddest child

I don't think society functions very well if everything is none of my ( the collective my) business

The ins and outs of someone else's private medical information - including their ASD diagnostic profile - really is none of your business though and is not the equivalent of moving on a bunch of smoking teenagers.

The other one I get is 'so you only have mild autism?'

No, I have autism lol.

The comments I got from certain family when we were looking at getting DS assessed. ‘He’s just tired’ or ‘He’ll grow out of it’. So helpful and supportive, I just don’t talk about it now as it’s not worth the disappointment. I have enough going on.

I have been asked, by more than one person, if my DD is 'like she is' because I'm a sahm.

Apparently that's made her spoilt, anxious and clingy, and if she'd just been put in nursery from a young age she'd have learned how to socialise properly. She's used to me 'pandering' to her now!

Yep, sure Jan. She's not got a diagnosed condition, she doesn't receive mid-rate DLA, I'm not her carer am I? She's just anxious and clingy because I dared to stay home with her after she was born, then I mollycoddled and spoilt her rotten! Oh and I didn't bother to send her to preschool two days a week from age three either, so that she'd 'learn to socialise' before school, did I?!

Weird also that her sister doesn't have autism (so far that we know of anyway!) isn't it? She's also been raised with me at home.

(No judgement here from me on children who are in nursery from young btw - props to you all who manage to raise your children and juggle work outside of home too).

Honestly. People are ridiculous and ignorant.

I think there’s an awful lot of misinformation out there about autism, and tbh I’m not sure it’s getting better. These days, depending on what you happen to see/read, you’re often left with the impression that either autistic people are perfectly capable of doing whatever they want, it’s not a disability it’s a superpower; or autistic people all struggle to do anything at all.

But then I’ve frequently been told I don’t exist, so meh. I’m female, and I was diagnosed in the early 90s as a child, and I’m high-functioning. But according to many people, girls weren’t diagnosed until 15 years ago, and neither were high-functioning autistics. Or Aspergers, or whatever. The diagnostic terms change every so often.

Certainly online, all I seem to see is “self-diagnosed” autistic people, and people diagnosed well into adulthood, who’ve often never had any mental health issues. These are the people preaching “autism activism”, but honestly I just have no idea what they’re talking about most of the time. I have consistently been talked down to, silenced, banned, because I don’t subscribe to their sparkly shiny view of autism. And often their hatred of the parents of autistic kids is horrific. Most parents are just trying to do the best thing for their kids, just like every parent, no need to be nasty.

I’m just done with them all, and I really wish I wasn’t so apparently obviously autistic, because I don’t particularly like being grouped in with them - I don’t agree with what they say or their viewpoints, yet they constantly talk on behalf of “the autistic community”. Except they really, really don’t. (Honestly I wish I wasn’t autistic for all number of other reasons too, but unfortunately I have no choice!)

@Thriwit

I think there’s an awful lot of misinformation out there about autism, and tbh I’m not sure it’s getting better. These days, depending on what you happen to see/read, you’re often left with the impression that either autistic people are perfectly capable of doing whatever they want, it’s not a disability it’s a superpower; or autistic people all struggle to do anything at all.

But then I’ve frequently been told I don’t exist, so meh. I’m female, and I was diagnosed in the early 90s as a child, and I’m high-functioning. But according to many people, girls weren’t diagnosed until 15 years ago, and neither were high-functioning autistics. Or Aspergers, or whatever. The diagnostic terms change every so often.

Certainly online, all I seem to see is “self-diagnosed” autistic people, and people diagnosed well into adulthood, who’ve often never had any mental health issues. These are the people preaching “autism activism”, but honestly I just have no idea what they’re talking about most of the time. I have consistently been talked down to, silenced, banned, because I don’t subscribe to their sparkly shiny view of autism. And often their hatred of the parents of autistic kids is horrific. Most parents are just trying to do the best thing for their kids, just like every parent, no need to be nasty.

I’m just done with them all, and I really wish I wasn’t so apparently obviously autistic, because I don’t particularly like being grouped in with them - I don’t agree with what they say or their viewpoints, yet they constantly talk on behalf of “the autistic community”. Except they really, really don’t. (Honestly I wish I wasn’t autistic for all number of other reasons too, but unfortunately I have no choice!)

Yep I agree and it's refreshing to read someone ,s experience ,that's not all sunshine and unicorns I'm not autistic but I have a severely autistic son ,and life is hard sometimes ,despite the huge amount of love I have for him .

...and neither were high-functioning autistics. Or Aspergers, or whatever. The diagnostic terms change every so often.

I think this is one of the problems that people not directly impacted by autism have. We can't say the 'right' thing because you learn one term and then you are told it is wrong.

• high functioning, Aspergers, is autistic, has autism, spectrum etc

Just like other areas (such as adoption), I think people need to look at the intent behind comments as much as the words. Are people trying to be dismissive or rude or judgemental, or are they actually just ignorant or trying to be nice or reassuring.

I know it is irritating, frustrating etc, but a lot of the time people are doing their best. Jumping down someone's throat for using replaced terminology won't help them listen or engage.

I have been asked, by more than one person, if my DD is 'like she is' because I'm a sahm

If its any consolation, when DS was first assessed I had CYPS (CAMHS) tell me to my face that DS issues were just attention seeking due to me working and having "several other children" (two children). No mention at all of DH working full time since before DS was born or that DS had been having these issues even when he was an only child, no no, all down to his mother working 20hrs a week during school hours when he wouldn't see me anyway. Funny how giving up my job didn't resolve it and he was diagnosed following a reassessment by the neurology team who had read his previous notes and said they couldn't understand why a diagnosis wasn't made at that point as there was more than enough information in the previous assessment to do so.

Thriwit

Thank you. I’m glad there are other people with autism out there who feel as I do.

@Ericaequites I would take a cure in a heartbeat, I'm currently watching my dd sleeping feeling heartbroken that her life will be struggle.

[quote lollipoprainbow]@Ericaequites I would take a cure in a heartbeat, I'm currently watching my dd sleeping feeling heartbroken that her life will be struggle. [/quote]
Ditto for my friend.

Her daughter cries/screams/self harms/ is unable to communicate her needs effectively/needs care for her her washing/hair/teeth/toileting - will need life long care .... she would 'cure' or stop her autism and would lose her arm for it to happen.... her life is a long hard slog. I think the people that are happy with their version of autism great for them but for others it is no joy

@Ericaequites

I have the disorder formerly known as Asperger’s with depression and anxiety. What bothers me are the “anti-cure” high functioning autistic who argue for neurodiversity. My autism shuts me off from successful friendships, the ability to work well with others, being in crowds, having children, and other things. I would happily take a cure. Many parents of autistic children would also want a cure if available. It’s hard to be happier than your saddest child

Spot on.

They have the voice because they are so able. The less able are often ignored.

I get both sides of the “cure” side of things. Ds is medicated for his anxiety which is very much a part of his autism and if I could cure that and the associated problems which come with that I would in a heartbeat. Same as I would his eating issues (and all his non related physical problems too!)

I don’t think wanting to be able to take away someone’s struggles is a bad thing.

I would take a cure in a heartbeat for myself and for my high functioning child.
The counter argument from the anti-cure people would be that the difficulties people experience are caused by concurrent learning disabilities, anxiety etc and not by autism per se, and they would argue that if I want to cure my child, I am rejecting who he is. I disagree. Autism prevents him from being who he is, and it’s the same for me. I would choose not to struggle.