Active discussions

Meet the Other Phone. Child-safe in minutes.

Meet the Other Phone.
Child-safe in minutes.

Buy now

Please or to access all these features

Talk
AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

Original poster

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

505 replies

User172818289 · 06/10/2019 14:44

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.

OP posts:
MrsBobDylan · 07/10/2019 16:57

I do understand the literal argument that it is impossible to separate a person from their autism. I also get that people are not defined by their autism, it is not everything they are.

Doesn't mean you can't feel sad and grieve, either for yourself or for your child (or both).

I can, hand on heart, say that I have never felt ashamed of ds. Even when he is swearing his head off in Sainsbury's. I enjoy his company and secretly feel sorry for those who do not have a son like mine because he is wonderful.

PralineCookie · 07/10/2019 16:57

I sat and bit my hands(Something I do when agitated or overwhelmed) throughout the thread because PottedShrimps' vile posts made me so agitated and angry. Where's my compassion?(I don't want or need any, just saying I refuse to give her a free pass to say what she likes just because she's autistic. She was way out of line with those remarks. I find the idea that you can post anything you like online without repercussions if you're autistic insulting as though we can't be expected to know any better.

PablosHoney · 07/10/2019 16:59

A very unfair way for her to talk you you OP, my work colleague and I both have sons the same age and hers is non verbal, I wouldn’t say anything like that!

finitemonkeys · 07/10/2019 17:03

@LoseLooseLucy
You fucking claiming I have shame in my severely autistic non verbal incontinent son finitemonkeys. Sling it 😠

Um, what? I was paraphrasing posts, opinions and real life comments I've had expressed directly to me and using it in a sarcastic way to show how ridiculous it is and how parents don't actually feel that way so it's important not to use language that might inadvertently imply it.

I don't know you, I don't know your son and I don't know what your relationship is - I'm sorry you're angry and offended but I think you've might have misunderstood because none of my post was about you.

Pagwatch · 07/10/2019 17:03

Finitemonkeys

I think life can be made easier yes.
I think it’s still important to note that for some people, for some of our children, society can bend as much as it likes but it still won’t make my sons life easy.
He’s stressed and anxious, he has diet issues that then precipitate gut problems, he is isolated and finds change difficult, his lack of language is a problem even when dealing with the most helpful of people in the simplest of situations

Society can help but that’s not going to make him independent, calm and safe

LoseLooseLucy · 07/10/2019 17:08

To the 99% - you're all right. Autism is obviously the worst thing ever, we're clearly nothing more than burdens on society and on our poor NT parents and in an ideal world, none of us would exist and you'd have all these wonderful socially adept children that you could take pride in, instead of shame.

I'm in that '99%' (if you mean the vote on here). I'm an NT parent with an autistic child. Entirely reasonable why I took offence, there's not much room for misunderstanding.

SinkGirl · 07/10/2019 17:12

I've had comments along the lines of "how dare you?", accusing me of calling people nazis

Someone literally likened me to white supremacists.

Was that you? If not, I wasn’t talking about you.

And I said how dare you for those who said I view my children as a nuisance (thank fuck I didn’t see the comment that implied I’m ashamed of my children - I was too busy touring the specialist school my gorgeous boys are likely to have to attend next year).

MarmitePaWill · 07/10/2019 17:12

This thread is somehow reminding me of that story about blind men describing an elephant, and they can't agree because one of them is describing feeling the trunk, another a leg, another the tail and so on.

I suppose autism is the elephant.

We're all at cross purposes and disagreeing because we're looking at totally different aspects.

Not a massively clear analogy, but still...

SnuggyBuggy · 07/10/2019 17:13

I'm not comfortable in general with shouting someone down just for sharing their own experience. Sometimes people's experiences aren't going to fit the narrative you want.

finitemonkeys · 07/10/2019 17:14

PralineCookie
I sat and bit my hands(Something I do when agitated or overwhelmed) throughout the thread because PottedShrimps' vile posts made me so agitated and angry. Where's my compassion?(I don't want or need any, just saying I refuse to give her a free pass to say what she likes just because she's autistic. She was way out of line with those remarks.

Fair enough. I obviously missed something important and I'm not defending something I didn't see.

I find the idea that you can post anything you like online without repercussions if you're autistic insulting as though we can't be expected to know any better.

That's not what I'm saying, it's not what I believe and I agree that the concept is insulting. Again - I'm literally trying to concede this point - I didn't see it, I don't know how bad it was and I'm not going to argue or defend the things I didn't see. I felt the initial reaction to her anger was a bit condescending and over the top but beyond that, I can't comment.

I was wrong to continue that defense without having all the necessary information - it was a misstep, I reacted defensively and I apologise. Again, my issue is literally with how it's described and how the choice of words used can make vulnerable people feel worthless.

Toddlerteaplease · 07/10/2019 17:17

I have friends who's 18 year old son is severely autistic. He's verbal and intelligent but will never be independent. Dad has a total breakdown because he never slept. And had to retire on health grounds. Their other children went to boarding school because of their brother. Though they love him dearly. I think they would agree that his autism has ruined their family life.

PralineCookie · 07/10/2019 17:19

I have to add that even though I hate having autism and I'm negatively affected by it every day. I actually don't spend that much time thinking about being autistic because it's the norm for me. I got a new support worker last week and she was asking me how it affects me and I had to take some time to think about it because I'm so used to living with autism that I don't give it much thought.

HeyNotInMyName · 07/10/2019 17:20

I was wrong to continue that defense without having all the necessary information

YY to that. Defending someone or something wo having seeing what it was about is a very dangerous thing to do.

finitemonkeys · 07/10/2019 17:26

@LoseLooseLucy
To the 99% - you're all right. Autism is obviously the worst thing ever, we're clearly nothing more than burdens on society and on our poor NT parents and in an ideal world, none of us would exist and you'd have all these wonderful socially adept children that you could take pride in, instead of shame.

I'm in that '99%' (if you mean the vote on here). I'm an NT parent with an autistic child. Entirely reasonable why I took offence, there's not much room for misunderstanding.

Sigh, ok - let me give this one last go.

I was using a ridiculous hyperbolic statement purely to illustrate how terrible the concept of a parent being ashamed of their child and wishing they didn't exist was. Yes, it's an awful thing to say - that was the point. The intention was for it to be read and immediately dismissed as being a horrible way to think, and - hopefully - to make some people think about their language and maybe realise that some of the comments here aren't supportive and distressing for autistic people.

Again - very specifically not about you but it is a useful reminder to me that I really need to find a way to convey sarcasm or hyperbole over text.

x2boys · 07/10/2019 17:30

Yeah I get what your saying Marmite,although the analogy isn't perfect those of us who experience life caring for a child at one end of the spectrum have no idea what it's ike to be autistic ,but those people with autism who are not caring for a non verbal ,child in nappies with zero awareneit of. danger have no idea what my life is like either Its like trying to compare chalk and cheese it's impossible

DUFFDADDY1 · 07/10/2019 17:32

Holy guacamole!
This conversation has developed since I have been at work.
I think there needs to be more empathy and understanding that a mother or a father or the main person ( with ASD ) can say they are finding it difficult. I / they feel guilt enough without being berated .

finitemonkeys · 07/10/2019 17:36

@HeyNotInMyName
YY to that. Defending someone or something wo having seeing what it was about is a very dangerous thing to do.

I saw the first bit and I saw the reaction and that was what I was discussing. After several comments that seemed out of context to what I saw, I went back to see if I'd missed a post and saw a group of about 4 or 5 deleted posts.

Just to clarify, I wasn't actively trying to defend the unknown. It was after I started realising that I hadn't got the full picture that I double-checked and realised that I might be missing something, hence the apology. But, you know, I did think I'd done the RTFT thing - I just missed a page that filled very quickly and as soon as I discovered my error, I backed down and apologised. No dangerous intentions, just an honest mistake and an attempt to rectify it quickly.

Branleuse · 07/10/2019 17:40

there are aspects to me, my partners and my children that would be much easier if we werent all autistic.
That doesnt mean that I dont really value the incredible work done by a lot of advocates in the neurodiversity movement.

This whole thread was started by someone saying that they felt that they should be able to say loud and clear that autism is shit, and lots of posts from people feeling annoyed by people who post about autism acceptance and positive sides to autism and that we should be maybe talking more about how shit it all is all the time?

You wonder why some autistics are getting defensive? Weve had a fucking lifetime of it. Its barely the last year or two we are having people actually allowed to articulate the good side to it. Ok, it might not all apply to you or your kid. Thats fine. Noones stopping you fighting their/your corner too

PralineCookie · 07/10/2019 17:46

It's ok. I think that we've all done that FiniteMonkeys. Threads can move so fast.

Branleuse · 07/10/2019 17:50

@toddlerteaplease what you are actually saying is HE has ruined their life.. This is the whole point. I wonder why they sent their other children to boarding school rather than insist on residential school for their autistic son?

PralineCookie · 07/10/2019 17:51

Noones stopping you fighting their/your corner too

Again IMO That's exactly what has happened on this thread, and what happens on most threads on the topic.People being shouted down and told that they can't say anything negative about their experience or parenting an autistic child and being told that they're exactly like white supremacists.

PralineCookie · 07/10/2019 17:51

But I'm just going around in circles there.

x2boys · 07/10/2019 17:52

But for some people it is shit all the time, I don't doubt for many they find their autism positive ,but for some families it isn't a positive experience,I think.if there was more awareness of how autism can present in all it's forms that might help, but I find autism awareness does the opposite of what it's supposed to do and give ,s the general public a false impression of what autism is

Tumbleweed101 · 07/10/2019 17:53

As someone who works with autistic children I can totally understand why a parent would find a non-verbal child who has multiple melt downs each day, bites and aggressive and little recognition of the care being given hard work and exhausting to care for day after day. All children are hard work at times and the behaviour some children display must be utterly heart breaking to deal with when there is no end in sight.

Equally, it’s fine to see the positives of a life with autism. We all cope with different things in different ways and for those on the end of the spectrum who are clever and focused bring a lot of insight and knowledge to the world.

All those points are valid. But it’s obvious that someone who will need care and support for a life time will exhaust their parents, especially if they sleep poorly, are aggressive or can’t tolerate society. Caring for anyone is hard work.

Bobbybobbins · 07/10/2019 18:00

This thread has been an eye opener for me. I'm an NT parent of two autistic boys. Both are low functioning and one is no verbal.

It's been useful to get the perspective of some autistic adults on here and it has made me rethink the language I use when talking about my son's' autism.

IMO the big issue is a small minority of people (both NT and autistic) who assume their experience and view of autism is valid for anyone or everyone else.

This seems to happen for a lot of other areas of life as well!