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.

My daughter is autistic. She has massive emotional and social difficulties and although it's highly likely she will be able to live independently I'm terrified of what her future will hold. I keep being told by people, including health professionals, that autism isn't a bad thing and it's who she is but I'm struggling to see what is positive about it.

I think it’s fine to say any illness/disability/difference can be a bad thing, because they do often limit the lives of the individual and family members.

ASD itself isn’t a bad thing, but the impact it can have is a bad thing.

Your colleague is a flaming moron.

YANBU.

It varies so much. Nobody should be making comments like that to the OP or anyone else. It's crass and inaccurate.

My DS has 'mild' autism and manages well. He is happy in a mainstream school; he sees his autism as a difference, rather than a problem, and we are very keen to share and perpetuate this view.

But the other day I was at a school event with him and saw what the other kids his age were like. Suddenly I had this picture of what he could be like without autism and it made me incredibly sad. There is nobody I would want to say that to IRL, though.

And he's one of the Sheldons.

I read your title and thought you would be Talking about high functioning autism.
My experience from family members and friends is that it’s can. Fucking hard work for them to be in the spectrum (and for those around them too). And that’s for people who have a job, sometimes a family etc...

For people, adults or children who are ‘low’ functioning, it’s harder still. A world different from high functioning people.

I have to say, yes in SOME cases, Greta Thumberg comes to mind, the autism/Asperger can be a gift in that it is giving her a single mindnedness that NT people might not have. But it’s forgetting the struggle she (and others) have had (see all the MH issues she had incl an eating disorder that stopped her from growing) .

Autism is a disability. And as such it’s making life harder for those who are affected.
Whether they are high functioning or low functioning. Even more so if they are on the lower end of the spectrum.

My dd has Aspergers and is so totally different to what I read above.
Mine does have a special talent, in fact is very gifted, she has always been hard work and comes with so many problems ito understanding and coping with boundaries. That doesn't sound much but it can be debilitating and a barrier to learning.
So, even those who appear to not have much of a problem, can find it just as difficult as more severe cases, just in a different way.

I strongly suspect my 20 year old DD is on the spectrum albiet very high functioning, she hates hugs, loud music and most foods with strong flavours, is extremely anxious, has meltdowns, so many phobias! and won't leave the house unless she is with someone. But she is actually a joy sometimes because even though she never says she loves me or puts x's on messages or hugs me (last voluntary hug was when she was about 10) I can feel that she loves me. And her sister loves hugs so she gets double!

I know of someone who has a quite severly autistic child and they are mentally and phyically exhausted. So I think it's not an easy cross to bear and if my DD was further in the spectrum I'm not sure I would cope. So it is definitely OK to say that IMO.

Yanbu OP

YANBU OP, my DD has non-verbal autism and attends a special school. As sweet as she is, I would take away her autism in a heartbeat, both for her and for the rest of our family. It is hard work. 4am wake-ups, meltdowns, fussy eating, no sense of fear or danger, screaming and hitting, climbs like a monkey, has a high pain threshold and is in her own world for a lot of the time. She’s five, I worry so much about the future and how she and we will cope as she grows. I worry that she will always need looking after, that she will need supported housing if she ever leaves home, that she will always be vulnerable and could be exploited, that our DS will feel burdened once we are too old or no longer around. I try not to think too far into the future as it is scary and makes me so, so sad for her.

I've not been long diagnosed as ASD. I'm an adult woman in my mid 30s. I have the formally known as Aspergers type. I sought diagnosis because all my attempts at a "normal" life just kept crashing and burning and I just kept coming back to "am I autistic?". Turns out I'm so obviously autistic they pretty much diagnosed me on sight. I do not see my autism as a positive thing and can't even imagine turning round to the parents of a non-verbal, very impaired child and trying to say that it is a positive thing. People saying it's a superpower makes me want to punch things.

Being Aspergers there are certain academic things I'm really good at. No use to me really when a single unexpected event can leave me exhausted and anxious for days on end! I somehow muddled through life fueled by pure adrenalin for over 30 years but the constant meltdowns nearly finished me off a number of times.

I'm a bit torn though because it's not positive BUT getting the diagnosis is a positive thing for me because now I understand I can cope better. The stigma of being autistic when I was a child led to me not being diagnosed... we could all just pretend I was a bit odd. So I'd like to see the stigma removed but that doesn't mean having to frame it as a damn superpower!

Someone said it well up thread. Acceptance doesn't mean having to make it out to be an awesome thing!

My dd is autistic. If I could I'd take it away in an instant. Shes what could be called "high functioning", verbal. But I hate those categories, because it is really quite debilitating for her. We haven't left the house all weekend, because she can't.

But there are many groups and even on here where autistic adults accuse of being abusive for thinking that. That we should celebrate neurodiveristy as a superpower.

I think people forget that autism is on a spectrum and those who know people on the 'higher functioning' end of the spectrum think that everyone with autism is just like them. But even higher functioning individuals also struggle a lot they just build up coping mechanisms to outwardly reduce their anxiety.

There are some great books / videos etc about and by Temple Grandin who is a high functioning autistic woman who is able to articulate really well her struggles- if anyone is interested.

I'm not autistic myself but I have a lot of experience working with adults on the spectrum and I also have a degree level qualification in how to support people with autism and even with all of the prior knowledge, I'd be upset if my child was autistic.

Yanbu and I am so glad the vast majority of views support that in the vote.

My son is very similar to yours - attends special school, wore nappies until he was 6 (is now out of them at 7 but won’t wipe his own bum due to sensory issues / dyspraxia), has severe communication needs, has a blue badge due to epic meltdowns especially in car parks and other public areas etc. I love him to the moon and back but that doesn’t mean I don’t hate the difficulties autism brings him. It’s okay to say that. You can hate the difficulties the disability brings and wish they didn’t have it. The media has painted this rosy view of autism where it’s a special interest filled bubble occupied by people like Rain Man and Sheldon Cooper. The reality for the vast majority of people with autism is very different.

I want people to accept and understand autism, I don’t want them to think it’s some magical power.

I think folding aspergers into autism has done a huge disservice to all people on the spectrum. My dd has challenges and needs support in organization and processing, but there is absolutely nothing stopping her from living a normal life. In a previous generation she just be an “absent minded professor” type, like me. People like my dd are the ones who end up more in the public eye. It distorts the reality for many other people on the spectrum and their families.

Mine is extremely high functioning but he still struggles with things other people don’t. I love his personality and I guess that includes the autism traits but would I get rid for him? In a fucking heartbeat!

Yanbu my son is nine and has non verbal autism and still in nappies,although we are working on that, the media doesn't help in the way it portrays autism ,in the look at all the marve!lous things people with autism can achieve ,it totally ignores as people like my son ,of course I 'love him to.pieces but if I could take it away I would in a heartbeat, I'm ta!king about my sons autism not other peoples,other people can believe their autism is a gift a difference whatever ,but for us it is very much a disability.

YANBU. As the saying goes - if you've met one person with autism, you've met one person with autism. I agree with PPs that people forget the spectrum.

My almost 5 year old DS has recently been diagnosed with autism, he is definitely more on the aspergic side and I think it's a shame that they've done away with that diagnosis. I always get "oh that's not bad, at least he'll be clever" and I want to bang my head against the wall.

My child is HF PdA.

I wouldn't wish the dreadful experience he's had in the education system and associated bullying on anyone.

If I could make him NT and able to live in a world where hidden disabilities weren't an issue then I would do in a heartbeat.

Your colleague sounds like a pain in the ass. And her seat has only been warm for 2 minutes?

I would not entertain any further discussion about your boy with her and if the preachy mare tries to raise the subject again, shut her down.

People are fucking idiots. They confuse acceptance of someone with a disability with the idea that a disability is not disabling.

I think this is so true about so many conditions.

I love my youngest, but I'd change her in a heartbeat if it took away the disabilities and health issues that make her life painful and difficult. You can love someone, but still wish they were different, especially when that difference would make life better for them.

I am completely with you OP.

Our DD is 12 and goes to mainstream school but my God it's been hard,she only got completely clean last year and she can still have the odd accident at home,she can hold it for hours at school(which isn't great)and the meltdowns she can have for us are unreal and it isn't helped by the fact that she's already 5ft 6 and her growth spurts are showing no signs of slowing down.

She wants to teach when she's older and tells us she wants to get married and have DC when she's big,nothing would make us happier if that was in her future but as things stand right now me and my DH can see her having to live with us forever pretty much.

We have 5DC and 2 of our DC are autistic,our DS18 is also autistic and his autism isn't as extreme as his sisters but it's still hard.

Autism is such a broad spectrum and I think sometimes too many people expect that someone who is autistic will be a genius and have very few negatives attached because of the autism and sadly they're very very wrong.

My DD20 is ‘high functioning’. She would choose to be neurotypical if she could and I would also choose it for her. Yes she copes mostly, but life is exhausting and challenging for her in so many ways. YANBU.

YANBU. I have HFA and sometimes it's a superpower and sometimes it ruins my life. Generally the latter has outweighed the former.

I wouldn't be without now, it's who I am but it's fucking hard work - and I've been massively lucky.

My BiL's autism allowed him to build a successful career in IT. He is married w children, to all intents and purposes both happy and successful. That doesn't mean his autism doesnt both negatively impact and limit his life and that of his family. It's classed as a disability for a reason.

My ds & nephew are both ASD, ds is in mainstream school & leads a relatively normal life with some adjustments, my nephew is in a special school, he will never live a normal life, be able to leave home, learn to drive, have a job, or do the things that young men do, he needs constant supervision, has mobility problems. Autism is a spectrum because no two people on the spectrum are exactly the same, there are thousand of elements to what makes up the condition.