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To think so many people have romanticised ideas of autism?

(405 Posts)
Merryfeckingchristmas Fri 15-Dec-17 22:35:40

Just this week I have had the following said to me:

Isn't it such a blessing to have such an interesting child?
I bet hes really good with numbers!
Xyz's boyfriends has autism and he went to oxford!
I'm sure he will be fine in mainstream if they give him more advanced work!

No! No just no. I want to punch all these people in the tits. Autism doesn't make my son rainman, it makes him the worst behaved kid in his special school nursery, it makes his targets for the year such basic things as 'engage in an adult lead activity for 39 seconds'

Why does everyone think my son is 'just a shy kid who's clever'

It doesnt work like that!!!!

Sorry if I'm irrational today, I've been filling out EHCP forms and met a 25 year old version of my son today, which bought home the reality that I could spend my life caring for DS.

Darknessinthevalley Fri 15-Dec-17 22:41:00

Totally agree. I've done quite well, and I'm proud of myself, but recently someone told my autism must make me 'so interesting' and another told me it was a clear advantage in life.
Yes, I don't focus on the negatives, but it's minimising and demoralising and people really don't get how tough living with this is, no matter how 'normal' I appear.

mostlikelyanunpopularviewpoint Fri 15-Dec-17 22:41:06

Definitely NBU.

It is hard to be a parent to an autistic child and you don't always have to see it as a 'blessing' as some people seem too.

Of course parenting a child with autism can be rewarding and every child has their values.

But it's still bloody hard, and you're allowed to admit that!

usernameinfinito Fri 15-Dec-17 22:42:29

I am thinking of you OP. Could not read and run. I think sometimes people want to make you feel better but no one truly understands unless they have a child with autism themselves.

I know that nothing I say here will make you feel better. But I can be a listening ear (or reading eyes) here.
You are strong. I don’t mean this in a patronising way, but as an acknowledgement of your strenght. Mothers of children with SEN have to be strong, as you know.

Ignore those comments when possible. Or avoid talking about autism with non SEN parents. Whatever helps you. [hugs]

GreyBird84 Fri 15-Dec-17 22:46:22

Fuck I know. It’s hard. DS is in a mainstream nursery & he is miles apart from the other kids. I think he’ll end up at a sen primary school. Breaks my heart with worry for our & his future. I can pick him up mid meltdown now as he’s 3 but whAt the hell will I be able to do when he’s 15?

WishingOnABar Fri 15-Dec-17 22:51:26

Very frustrating when people ask what ds’s ‘special skill’ is. I think rain man has a lot to answer for, esp. since the man it was based on wasn’t actually autistic.
I quite often wonder just how independent my son will really be later in life, it scares me I cannot be there for him forever

Renfrewshire Fri 15-Dec-17 22:52:13

YANBU. There was a woman on R4 last year, talking about her daughter with autism. Said everyone says "ooh she'll be good at maths", actually she has a low IQ and struggles with day to day stuff. The increasing digitalisation of everything makes it harder for her too - things such as banking now being done on computers and online is a lot harder for her and makes it harder to be independent.

Thesmallthings Fri 15-Dec-17 22:53:01

Ynbu at all. I have no real experience of living with a child with autism but I do work with a child with very low functioning autism, he really is a joy to be around and makes me smile daily but he is hard work and incant imagine how hard or how heart breaking it must be for his parents to realise he won't progress much further if at all.

I think people are trying to be kind but maybe being thoughtless with it.

KimchiLaLa Fri 15-Dec-17 22:53:08

My brother is 45 with autism.
My parents do care for him even now. He comes home daily despite them having respite care.
If it wasn't for my other older brother (who I suspect also has some autistic tendencies but not officially diagnosed) I'm not sure they would cope. He has taken on the role of primary carer.

shorty6768 Fri 15-Dec-17 22:54:32

Agree with this completely. I’m so sick and tired of aspergers being referred to as ‘normal autism’. I’m so sick and tired of the competitiveness and shame that’s being thrusted upon asd parents because it’s now a ‘smart’ disorder and if your child doesn’t fit that mold then you don’t belong there.
I’m also sick and tired of crying about the thought of ds needing adult care when he’s older. I’m tired of listening to people describe autism as quirky. Tired of people pretending it’s just a geeky personality. Tired of people saying we shouldn’t be trying to cure it. Tired of not having a space where every bit of progress is celebrated no matter how small, rather than the focus being constantly on what he can’t do..,,, just tired.

Fairylea Fri 15-Dec-17 22:55:58

Oh yes. I have a ds aged 5 who has severe autism and leaning disabilities and attends complex needs school. When I talk to people about him 90% of people always say something like “oh autism people- they’re really clever aren’t they?” I think the general public really don’t have any understanding of anything other than high functioning autism or aspergers as that’s all that’s talked about in the general media.

And then you get the older generation who think complex needs schools are still some sort of horrible institution you send your child away to and look at you like you’re an evil mother for fighting to get your child a place at one...!

So many stereotypes, so many judgey pants.

pisacake Fri 15-Dec-17 22:57:38

well tbf it's not that much fun even if your child is high-functioning.

rabbitsdontlayeggs Fri 15-Dec-17 22:57:47

I think the problem is, people who don't know anybody with autism just don't understand how complex it is. I don't. I don't know anyone autistic (that I know of) so all I have to go on is what I've seen on tv - Sheldon Cooper/Temperance Brennan types. Which obviously I know is completely narrow and wrong, I've been learning a lot since joining MN but unless you're involved it is hard to understand. Shouldn't be hard to be empathetic and not make stupid comments regardless but I suppose when people say how interesting a child is they are probably being nice, paying him a compliment (not untruthful, I'm sure your DC is interesting!).

The media always portray autistic individuals as clever, awkward socially, with strange quirks etc. Most people only know the stereotype.

MycatsaPirate Fri 15-Dec-17 22:58:02

YANBU.

The ASD spectrum is so broad and each child has their own quirks, talents, struggles etc.

DD2 has ASD and she is in mainstream. She is 12 and diagnosed this year. She is good at masking and I have had soooo many people say (when I have mentioned that she has ASD) 'oh! really? She doesn't look like she has autism! You'd never know!'

Like wtf does a person with ASD look like then? And you'd know if you lived with her or spent a considerable amount of time with her! The anger, the screaming/shouting/crying/swearing/throwing things, completely breaking down and taking hours to calm down.

Few people know her as well as I do. My dp, my DD1, a few people close to us who have witnessed first hand that she cannot cope with pressure or social occasions. That she has no verbal filter and can come across as incredibly rude because mouth gets put into great before her brain.

So yeah, she is bright, she is brilliant academically, she excels in maths, art, sport but she is so far behind her peers socially and so immature emotionally that it breaks my heart when she is left out so much.

WhooooAmI24601 Fri 15-Dec-17 23:00:26

I have a friend who is mostly lovely but any time anyone anywhere mentions Autism she declares "well everyone's on the spectrum somewhere" as though it's not really a big deal because everyone's like it.

No. Not everyone needs to live the life we live because they've spent 12 years learning what works and doesn't work. Not everyone has learned to read their children's signals to pre-empt when a difficult patch is coming. Not everyone plans day trips and events meticulously thinking 57 steps ahead in case things are too overwhelming. Not everyone has to hear their child come home and say "Mrs M says I'm not Autistic, I'm just naughty" when they're 7 years old. Not everyone has to hear their 9 year old cry that they don't fit in anywhere and don't want to live. Not everyone. Not even remotely.

I don't ever say that to her, though. Because even if I did, she'd carry on blithely assuming she knows better because her friend's cousin's DC has Autism so she just knows.

Merryfeckingchristmas Fri 15-Dec-17 23:00:45

Yes ! My son attends a special needs nursery , we are going through the EHCP now as he will not be able to attend mainstream for at least infants.

I had his Christmas party yesterday me even in his small cohort of 6 kids (only autistic kid) he was the worst behaved, he smacked another child's mum as she was singing with the other kids and he cannot stand singing .

People seem to think it's a gift that shouldn't be cured. My son is 4, he can't speak; can't use the toilet, struggles with every day tasks and then some parent with a mildly autistic smart kid wants to tell me how blessed I am... forgive me if I ask you to back the fuck away! That's my baby, this is the future I wanted for him

TheHeraldOfAndraste Fri 15-Dec-17 23:01:00

I hear you OP. It just sucks sometimes.

HairyToity Fri 15-Dec-17 23:01:07

Sending hugs. My brother is low functioning autism and its tough. There is such a range of abilities on the spectrum, and high functioning autism (which when my brother was young would been aspergers) gets more press. People make assumptions sometimes.

Boulshired Fri 15-Dec-17 23:05:46

For me the stupid but most of the time well meaning comments became less frequent after the age of 7 regarding DS2. At that age his future became more clearer for those around them. It’s a complex condition with people whose lives are severely impacted to those who embrace and even flourish with their condition.

Merryfeckingchristmas Fri 15-Dec-17 23:08:05

Mycatsapirate

We get that too!! Apparently DS does not 'look autistic '

Wtf does autism look like. I'm biased but he is a handsome lad. People often go 'ohhhh' after seeing him for more than 5 minutes, when he starts smacking himself and shouting as he's uncomfortable with this new person around.

Weirdly people always expect him to be overweight , he's actually skin and bone, though surprisingly heavy, due to genetics (not from me!) and a limited diet.

Merryfeckingchristmas Fri 15-Dec-17 23:11:35

For me the worst comment was from my nan, my cousins boyfriend has Asperger and went to oxford.

She thinks if I just tap into his passions and exploit them he will also go to Oxford.

I'm not sure Oxford do courses on 5 little monkeys jumping on the bed, which is all he watches and plays...

I'm not playing down his struggles , it's great that he has achieved so much, it doesn't make his experience anywhere near my sons, after all if you've met one person with autism, you've only met one persons version of autism

shorty6768 Fri 15-Dec-17 23:12:14

@Merryfeckingchristmas

Mine is skin & bone too, quite pale but very handsome! Definitely a cute kid.

Eltonjohnssyrup Fri 15-Dec-17 23:16:00

I think the problem is that saying something positive is probably the best course of action people can take. If they said 'Oh no, how awful' it just shut down the conversation more people would be hurt. They're trying to be kind.

Boulshired Fri 15-Dec-17 23:16:50

I do usually describe my DS as having severe learning difficulties and avoid Autism, mainly as it gives the person little information and it stops them telling me about XYZ as a conversational filler.

I've said before that I think merging the aspergers diagnosis in was a huge mistake because it means nobody gets the right bloody support or understanding.

It must be so frustrating listening to that sort of nonsense. The whole "no need to cure autism" argument really gets on my tits too. It totally ignores those who are more severely impacted and unlikely to ever lead a fully independent life, ignores the immense strain on their families, and also doesn't recognise that even those who are in the high functioning, clever aspie stereotype box can still have real issues which they would gladly cure if they could

Should say that I have aspergers/hfa myself.

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