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.

This link helps to explain and educate about the spectrum and the different ways people can be affected by autism.
I've found it good to share with people who don't understand what a severe impact autism can have on peoples' lives. For some it's an invisible disability because it's not immediately obvious, for others it's far from invisible. OP, please share this with your colleague.

theaspergian.com/2019/05/04/its-a-spectrum-doesnt-mean-what-you-think/

I also think autism is one of the most misunderstood conditions outside of the closest family members of autistic people.
It's also a condition that draws a lot of comment from people who know absolutely nothing about it whenever its mentioned and it has the most myths and misinformation perpetuated about it.

I have 24 year old twins at opposite ends of the spectrum. Ds is non-verbal and lives in a lovely residential provision. He tends towards violent outbursts and cannot cope with a lot of interaction, plus he has epilepsy. Dd has a degree and a good job but she still has her struggles every day. I'd take autism away in a heartbeat if I could.

Someone saying it's not so bad, doesn't understand autism at all just like those who say everybody is on the spectrum - nonsense.

Actually @AnnaMagnani has just summed up his life and attitude to autism exactly.

yanbu.

Colleague sounds very insensitive, but maybe she was attempting to show you she "understands" because she has (limited) experience of autism. She clearly didn't express this very well but maybe her intentions were not to hurt.

However, as a parent of a child with autism this would make my blood boil!! It is a disability, and why on earth should anyone feel guilty for wishing their child's life was less challenging?

Y are definitely NBU. My eldest has the Sheldon type of autism. He is even into maths and theoretical physics, but he suffers greatly. He has no friends, is vulnerable, has been bullied at school to the point he wanted to commit suicide, yet people just see a very bright and talented young man, who is polite and well spoken. They tell me I'm lucky, and yes I am, but I wish that both he and I had never had to go through so much struggle and heartbreak to get here. And I'm terrified of what he might go through in the future. He has aspirations, but I don't know how he will achieve them with such a high level of anxiety and being unable to manage his own finances, even though he is like a walking talking computer

Op, could she have been trying to put a positive spin on it?to bolster you up?

I am recently retired from teaching children severely disabled by their autism. I loved my job, loved the kids, and had respect for their parents.
I used to get physically hurt often (it's the reason I retired earlier than planned - I realised that my body wasn't bouncing back as it used to and was worried that more injuries could ruin my retirement)

People used to hear what I did for a living and act like I was a saint. I hated that, and always pointed out that a) I chose to do it because it was fun and rewarding and b) like a pp, I could put them on the bus at 3:15 at the end of the day (and also look to the time when I wouldn't have to do any of this any more). And that it was the parents that these people should have respect for.

Of course autism, for the vast majority of those with it (and their families) is far from a good thing.. But I can understand why the general public gets confused. They've been told for years not to write off those with a disability, so they try to be positive about them. And the small minority of people who have found autism a positive thing in their lives (Greta Thunberg for instance) are the ones they hear of in the media.

I can't add anything ... but its just one of those "grown up" mumsnet threads that make MN worthwhile.

Some people don't want you to feel your pain is one aspect ...

This is a good thread.

I used to be FB friends with an autistic woman who was also an advocate for autistic people - but she had a very blinkered view herself on how it could affect other people. Not her autism, but how other autistic people could be very different and have very different experiences of autism. She had her trials with it, but she was also adamant that she wouldn't change it if she could because it had made her the woman she was.

She was quite hard on parents of autistic people, where those autistic people had far different challenges to her own, and got upset when they said they would take their child's autism away if they could. She couldn't see that their child's experience of autism was so very different from hers.

Its a well meant but uninformed attempt at reassuring you. Because people dont know what to say otherwise. I do think that the challenging of stereotypes hasnt really helped - its just given other stereotypes, hence the whats his superpower type questions.

There are people with autism in my extended family.
The point is that it is now referred to as being on the 'Autism Spectrum', and therefore some people / children with autism are high functioning, but others are not.
It has definitely ruined the life of the parents who have a child with severe autism, and affected his sibling.
However, that does not mean your child will be exactly the same.
If your child is a high functioning autistic child, then anything is possible, but the child may still have some social difficulties.

[FLOWERS]

YANBU

my son was obsessively musical. The solution was to remove music from his little world for a while so he sought out other types of pattern recognition - and eventually came to recognise his own name at age 4.

But I had to clear the ground of all the "oh look at him harmonising on the piano isn't it great" crap in order to figure that out.

"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."

exactly.

I'm high-functioning/what was formerly known as Asperger's and it's not a matter of just being a bit quirky. I have a degree but frequently find things like bus journeys overwhelming and unbearable and sometimes just burn out completely, I can't do eye contact well and I know I can't which causes additional anxiety, and with social situations I always feel like everyone's in on some secret I'm not. And I'm comparatively very lucky because I can speak, attended mainstream school etc etc
But I think there's inevitably going to be conflict between self-advocates who are highly functioning and the parents or carers of low-functioning autistic people because the issues involved are often diametrically opposed e.g. trying to prove that you are good enough to do a job and sometimes your autistm can be an asset vs trying to explain to people that no, your severely autistic child will never be able to work. Because of this it all gets quite nasty (and I can't stand the idea that higher functioning people are doing it as some kind of trend or just a bit quirky and apart from that it's fine). I don't know how to square that circle and I actually think getting rid of Asperger syndrome as a label was a mistake for that reason because while in both cases they're an impairment to communication, sensory processing etc, they impact people's lives so differently and the people with them have such different needs that it's best not to conflate the two.

I do sympathise, OP. It is very hard to accept that your child will never have the sort of life you envisaged for them. My daughter has talents but I wish other people would realise that she needs lots of help and will continue to do so. A hard path for parents to tread.

people don't see the anxiety, confusion, frustrations, obsessions and anxiety he has over the most basic things

Well exactly, and that's normal daily life for the vast majority, even at the so called high end.

A child with autism becomes an adult with autism and many 'high functioning' become very aware how their lives differ from their peers and how frustrating that is. And they're not always grateful, accepting, contented, realistic and a pleasure to be with. Why would they be?
I don't see my son's ( HF) autism as a gift and I don't think he does either since he won't even acknowledge it most of the time. Not that that makes it go away, it just causes more difficulties. As a parent you are never quite off guard as you are their advocate through thick and thin, but you must learn to walk the tightrope between independence and support. The biggest worry, of course,is what's going to happen when you're no longer around.

It irritates me when I read of parents saying 'we wouldn't have him any other way' etc etc. Do they honestly mean that? I accept the autism but I would never have chosen it.
So YANBU OP. Your colleague was insensitive but probably trying to be positive for you but in reality,a bit clueless.

I'm going through the assessment process for Autism at 53, I went to a mainstream school, had a job, got married , had a child, drive, all very normal things, but nobody saw the other side of appearing normal, I'm like a swan gliding across a lake looking calm & relaxed but paddling like mad under the water. Nobody saw how anxious I was in school & work, how hard social interaction was, what I had to do to look normal, the times I have been bullied & told I wasn't normal, the fear, the sleepless nights, the feeling sick to my stomach over some things that should be pleasurable like a night out, how hard I have to work to follow social cues, the fact I have known all my life that I wasn't the same as everyone else but not why I was different. I have always felt that I was an awful person who didn't deserve to be treated better, that everything was my fault & have punished myself time & time again, it has taken me 53 years to ask why & now I want answers so that hopefully I can learn to forgive & love myself.

she said that I shouldn't define him by a label and there are no limits on what he can do

Fuck me, OP, I would probably have punched her on the nose right then. Stupid, ignorant, thoughtless woman.

Of course autism can have a horrific, severe impact on the lives of people who suffer from it. Of course there are 'limits' on what someone with severe autism can do.

She was quite hard on parents of autistic people, where those autistic people had far different challenges to her own, and got upset when they said they would take their child's autism away if they could. She couldn't see that their child's experience of autism was so very different from hers.
I would add though that this isn't that surprising given even high-functioning people have difficulties with communication/expressing empathy or grasping what other people feel like, I know I don't intuitively grok what other people might be thinking or experiencing and to be quite blunt I don't think you can reasonably expect even us Sheldons to automatically do that.
(Could this be part of the problem in the first place? I think it could be tbh, it's probably a bit taboo for someone who doesn't have ASD to say it but it's probably not actively helpful that even though we can absolutely advocate for ourselves and our own experiences it is actually extremely counter-intuitive for us to grapple with those of other people)

She was quite hard on parents of autistic people, where those autistic people had far different challenges to her own, and got upset when they said they would take their child's autism away if they could. She couldn't see that their child's experience of autism was so very different from hers.

I’ve encountered so much of this.

It seems to me that people like this expect me to be able to separate the learning disabilities from the autism - understanding I would want to rid him of the learning disabilities but keep the ASD. I can’t separate them like that, they’re inextricably linked for my children. They simply don’t understand that language exists, at all. The sounds I make mean nothing to them, any sounds they make have no intent.

I really struggle because DT2 in particular had a severe regression at 18 months - until then he seemed to be developing pretty much normally, just a few small delays in line with prematurity, illness etc. It was literally like part of him went away overnight. It’s never come back. That’s absolute torture to watch.

I was part of a parenting group at the time and there was very much an attitude of - so what if he’s autistic? So what if he never learns to talk? Etc. It just made me feel like a terrible person for wanting my son to be like he was before. And then the realisation that while I was so focussed on DT2, DT1 stopped making eye contact, interacting with people, noticing people etc. It was the worst few months of my life.

OP I’ve brought all this up on multiple threads and most people are agreement.

I think it’s fantastic that so many autistic people view their autism in a positive way but they have no right to tell me how I should feel about it. I do everything humanly possible to help my boys progress and reach their own potential and I couldn’t love them any more than I do - but I fucking hate autism and often wish none of this was happening.

Yanbu.

I get increasingly frustrated with the “high functioning” (for want of a better term, I hate that term!) autistics who try to downplay the struggles of others.

I have had people argue that autism isn’t a disability. Just because one person doesn’t see their autism as a disability doesn’t mean that it isn’t for many others

Nat I hear you.

I'm NT, strangely enough.

Son's a bit odd (borderline ADHd? who knows).

But I totally hear you.

YANBU at all.

I have aspergers, so does my DH. Sometimes its fun to laugh at how weird and illogical the NTs are but generally having autism isn't that fun. It rarely benefits me but hinders me every single day, largely in ways that I can't articulate. Dh has the same experience. We have both been in well paid, respectable, responsible jobs but not without help and understanding from employers. Sure, I am married to an autistic man and have mainly autistic friends and a "normal" life by societies bullshit standards but that was hard fought and is not an easy thing to maintain either. From the outside my life is perfectly Naice if you discount my failing health but that doesn't mean it is.

I like to look at it like a computer operating system. There are many different OS, some computers run iOS, some windows. These are the two main types, one is a little more flashy and one more practical but both are accepted as "normal". Other computers run Linux. There are literally hundreds of different variations of Linux; some of them could hack into the Pentagon, some you have to build from scratch and input the coding exactly right or they stop working and you have to start again but there is no manual, some take up a tiny amount of memory but don't do much, some are really really similar to iOS or windows but have a few other features or limits etc etc. Some of these Linux OS are really useful but others are a nightmare to use and when the average iOS/windows user tries to interact with one it seems odd and clunky and confusing. Some computers can only run one OS, some are capable of using a couple different ones so its about finding the right fit for the user. Autism is a lot like Linux. We all run Linux but we don't all run the same variant, nor are we capable of it.

I have taught children with autism for many years. When you know a child with autism you know that individual child with autism. You do not know everything about autism.