To think that actually, autism can be a bad thing and it's okay to say that?

[User172818289]

My DS (5) was diagnosed a year or so ago. He is almost completely non-verbal, not potty trained and not looking like he will be for a while if at all, has to go to a special school and doesn't really interact with anyone much. We have basically accepted that he is not going to be able to have a 'normal' life, although we do things to make his life enjoyable and easier!

New colleague at work, started at the beginning of September has a son about the same age as DS. She asked what school he went to, so I explained that he has autism and goes to a SS. She goes 'Well autism isn't a bad thing' and goes on to talk for about 20 minutes about her autistic brother, who has 2 degrees, a girlfriend, a reasonably normal sounding life I would say.

Of course we love DS with all our hearts but I can't help sometimes wishing he didn't have autism. I tried to say something along those lines to colleague, I said something about yeah but he can be challenging sometimes and she said that I shouldn't define him by a label and there are no limits on what he can do.

AIBU to think actually autism can be a bad thing? I am not trying to offend anyone on here, please feel free to take this down if anyone is offended.

YANBU.

And I include high functioning autism in that.

‘There are no limits on what he can do’

That would upset me no end. There are many many autistic people, whose autism severely limits what they can do.

She’s basing her knowledge of autism on the ONE autistic person she knows.

My child has autism. He does speak, he does have friends but I don't know how he will ever be independent. I'm terrified of his future and what will happen when I'm no longer around. Its not a great thing at all.

I think a lot of people hear “autism” and they think “oh, like Sheldon from the Big Bang theory!”. The only way we see autism portrayed in the media is on the very mild end of the spectrum, or people that are maybe more severe but have some sort of “gift”.

It may be best to move this to the SN board though, OP, as I fear that you’re going to get a pasting from people who have no experience and will just jump on you.

YANBU. She has failed to realise that not everyone with autism is affected in the same way.

Like many diagnosis, there are wide variations in what life will hold for people with autism. No one person is the same and it’s ok to feel deflated. Your colleague is obviously upbeat due to her experience but yours could be very different. So you are perfectly entitled to feel it’s a bad thing and she can have her opinion, based on her experience, but they are not the same experiences so most people would have differing opinions of autism based on this.

YANBU

I agree with you. I always see
People say they wouldn’t change their child having autism but actually I would if i could. DD struggles so much that even taking her on the bus is a challenge and is extremely difficult for her it effects her day to day life and I worry how she will cope as an adult.

YANBU.

I have twins who are 3 and both autistic and I get this a lot - it really gets to me. I don’t know if they’ll ever be able to communicate with anyone, they don’t interact with each other at all and have only started showing interest in DH and I recently.

Then there’s the people online who called me an evil, terrible mother when I expressed concern about them possibly being autistic. People telling me it’s not a disability, it’s a difference. Well actually, for my children it’s absolutely a disability and impacts every second of our lives. There are no positive aspects of autism for us, not yet anyway. I’ve had highly educated, eloquent autistic people attack me for being low about having severely impacted children and wanting to “change who they are” (yes, I would take the autism away in a heartbeat if I could, because of the associated severe delays).

YANBU.

I've just come back from a day out with my brother who has autism (in our 50s). Life for him was hell as a teen/ young adult and he dwells on it a lot. He lives in a supported flat and has developed a daily routine that suits him. I love him very much but wish that he wasn't autistic for his sake, not mine.

YANBU. DS is high functioning but even with that he struggles with so much that neurotypical children of his age don't even think twice about. He has some other disabilities as well and if I could take all his pain and difficulties away I would do it in a heart beat. I also don't presume I know what someone else is going through just because my DS has the same diagnosis. The spectrum is far too wide to even pretend I know what life is like for all parents of children with autism.

My son has non verbal autism, and also not potty trained yet, hes coming up 7 and tbh.. this probably sounds selfish but autism has made him stay my baby that little bit longer, hes very cuddly (with me) very much a mamas boy.. my best friend! I didnt know much about autism before we started his diagnosis journey, and still learning now! Although it does not define him, it is a part of him and i completely adore him.. autism and all :)

My 6yo DS has ASD. My family think it’s all ‘nonsense’ because he seems ‘normal’.

He’s like to be relatively independent but life won’t be easy for him and he’s definitely one of the ‘fortunate’ ones as he’s at mainstream school and intellectually unimpaired.

I adore him. He’s funny, cheeky, clever and sweet.

My son is a ‘Sheldon’.

I’d still take his Autism away tomorrow.

Is this a controversial thing to say??

I cant imagine why it would be

Agreed. DSS goes to a SS, is still a toddler developmentally, will never live independently has medical problems together with a diagnoses of ADHD and autism. Some children do not have a “special skill” and it can be incredibly insulting to suggest that autism might somehow help them acquire one.

My ds can speak and is reasonably intelligent but my god the difficulties his autism causes him! People have no idea.

I want to keep imagining a bright future for him and I'm determined to focus on the positives but it's not always easy to do.

I think a lot of people hear “autism” and they think “oh, like Sheldon from the Big Bang theory!”

Definitely this. I think some people see autism as almost a personality quirk or something. Autism awareness has increased hugely, which is a good thing, but I think it is very skewed towards the high functioning end of the spectrum. Few people have knowledge or experience of the more severe end and how incredibly difficult it can be, not only for the child but for their family. YANBU. I hope things work out well for your DS.

I have two girls with autism. Both on very different ends of the spectrum. My youngest will always live with us. She’s 6, doesn’t talk, no fear of danger etc. I love my girls but there autism makes it very very hard for them and for us as a family. If someone could take away their autism I’d do it in a heartbeat. It wouldn’t take them just the struggles they have but it feels like you’re not allowed to say that.

Some would say that society is the problem, not the autism.

I'd still say that although it may come with great strengths, it also comes with costs.

Even the 'Sheldons' struggle at times.

I know a family who's son is severely autistic and they would be the first to tell you it has ruined all the families lives.
He is now an adult , is largely non verbal ( will repeat a word or two) cannot leave the house unless he has 3 carers ( which attend his home Mon - Fri )
He has always lived at home but their other grown up child has not had a proper childhood because of this and does not work due to extreme self-esteem and acute shyness . They cannot form any relationship with others, no partner , no friends etc. Still lives at home mainly in their bedroom .
The parents never leave the house together, father works, mother never worked .
When the lad was a child the whole house was run around him . So I would definitely disagree with your colleague .

YANBU

My DD sounds like your ds, op. She was diagnosed at 3yo now 6yo, she's non verbal and not toilet trained. Attends a Sen school, unable to read/write and developmentally that of a toddler. It's highly unlikely she'll live independently and she has no "superpowers" like some people suggest.

I know quite a few adults with autism and while I do completely understand their argument that I, as a neurotypical person, cannot possibly understand, I do find their attitude towards parents of children with autism quite difficult to take sometimes. They (and by that I know the few specific people I personally know, I'm not trying to say this is universal) are absolutely adamant that any parent who has any negative feelings at all about their child's autism is a narcissist who is projecting their own ideas onto their child rather than accepting them as an individual, which just feels so black and white and so harsh to me.

@araiwa it's controversial because some people take it to mean you don't love your child for "who they are" that by saying autism can be shit and you'd take it away if you could then you obviously aren't accepting of your child just the way they are.

That's obviously bollocks but unfortunately some people have that attitude.

My son has autism, personally I wouldn't use the word 'bad'. He is 15, in mainstream school, doing OK. Undoubtedly his life would be easier if he wasn't autistic. He has his limitations. But he also has some very positive things in his life which are related to his autism.
But, if he heard me use that word he would conflate that with him being a bad person, which of course he isn't. He is different to his peers but I don't want him to see difference negatively.
But I recognise that there are many children and adults much more profoundly affected and wouldnt presume to project our experience on to them as evidence of how autism 'is' . We all experience it differently and should accept that. And yes its ok to say sometimes its hard, its unfair, its difficult and I wish it wasn't.