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.

Iborgia sure, that would be a problem had I spoken in generalizations on behalf of everyone I know, but then again I didn't, I only spoke about myself, so I am not sure why you are calling me out about something I didn't say.

I'm a late diagnosed (early 30s) woman with ASD. It makes my life so hard, and I have lost so much due to it. YANBU to see it as a bad thing.

However, personally I find my autism difficult to disentagle from who I am, and the things I think are important in life, so it's a bit complicated. For example, I value honesty, fairness, and integrity. An "obsession" with fairness is supposedly an ASD thing. It seems ridiculous that "fairness" is considered something basically good by most people, but actually not valued, and seen as weird, when it comes down to it.

But this is where I think autism can be seen as good thing - I have had cause to - fleetingly! - wonder if a certain segment of the autistic population is actually a kind of advanced human (I don't actually think this). When I look at the social games people play, the hierachies and discrimination (in subtle ways, not stuff like racism), the problems caused by a lack of straightforwardness, the problems caused by group loyalty at the expense of fairness... I find it quite bizarre that neurotypicals think we are the disordered ones!

Caveat to all this is that I think autism is really poorly defined and understood, and covers such a vast array of people as to be almost meaningless - it really needs many more subcategories.

WutheringBites I also think there is something about the need to drown out female voices on this. It’s like the update of “refrigerator mom”, isn’t it?

This is an interesting point, but I'm unsure exactly what you mean? I think you mean drowning out the voices of mothers caring for autistic children? I don't disagree, but I think it's interesting because the same could be said for "high-functioning" (lot of issues with this phrase!) autistic women. We are the ones most likely to appear neurotypical ("fine") hence missed or very late diagnoses, ad our needs are often not even considered. For example, the high cost of trying to fit in and be compliant (and various other sterotypes expected of women, like pleasing men and putting others' first) is being easily led and easily abused. The cost of passing as neurotypical is that we can't keep it up and break down, ending up misdiagnosed and passed from pillar to post in the psychiatric system, likely told we have a personality disorder and treated punitively, or alternatively psychotic and heavily and inappropriately medicated. Compared to high-functioning men we are less likely to get married or have an understanding partner to support us, and more likely to be abused.

Um, I've lost my thread a bit here , basically, I think there could be an element of drowning out women's voices but I think it's more complicated than just being on one side of the debate. I mean even the "positive" sterotype of a socially awkward geek who's a genuis with technology is a male stereotype. Autistic women's "special interest" is often "How to appear neurotypical and understand others" (apparently an awful lot of us end up studying psychology!) but this is not a marketable strength in the same way.

Whoops, that was a bit long!

Flamingjune I was diagnosed as an adult and it matters massively. When you've struggled through life with no idea why it makes a huge difference. I know who I am now, I can (and I'm not afraid to) make adjustments.

Before I was treated and judged as NT and I just couldn't cope. Couldn't understand why I couldn't fit in.

Hmmm. Just adding my experience. My son's have ASD and ASD + ADHD. They are very academic and appear well adjusted. Their conditions affect every minute of every day, every question I ask every response I get, any activity we do and any time we spend in. From the moment they wake (anytime between 2 and 6 am) to the moment they sleep at about 11pm. Anyone looking in will see nice kids but a bit emotionally fragile and immature. I'm sure some would doubt their diagnosis. But let me tell you about me. Mid 40s, successful professional career, highly qualified. I had to work 10x harder than my peers to get those qualifications. I never did as well as I should have done. I spent my childhood being called lazy, day dreamer, disorganized. I was never quite good enough. I have spent my adult life being never quite good enough. Terrified of failure of social embarrassment. Recently I was diagnosed with ADHD. Suddenly I feel I haven't spent my whole life failing. I have succeeded despite the challenges. I have 40 years of anxiety and self esteem issues to deal with but at least I know why. If I can spare my children the distress I have lived with by acknowledging who I am and who they are than I am happy. And yes I would take my children's disabilities away in a heartbeat if I could. It's really really doesn't confer much advantage to them or us

MarmitePaWill you put that so nicely! I also have an obsession with fairness, integrity and truth, but why should this even be characterised as 'an obsession'? Surely we should all be obsessed with these things, and not being obsessed is a failure of the NTs not the other way round. There is something perverse in how NTs present human excellences as ASD obsessions.

Booboostwo - unless you were directly asked about how you experience autism, then you can't assume that Heynotinmyname was talking either to you or about you.

She was telling another non-autistic person that they can't assume how the autistic people in her family experience their autism, just by observation.

There is nothing wrong with pointing that out and it did NOT mean that "all autistic people struggle", as you have taken from it.

Autism varies and differs with every individual that has it. DS (20) is autistic and on good days he is like Sheldon from Big Bang Theory and on bad days he is utterly paralysed with anxiety and totally confused by the other people he has to live on the planet with.

I love him and all his quirks and peculiarities with all my heart but I would never have wished for him to be the way he is.

You are not BU User172818289 in my opinion.

I do have friends who have children who could be considered fairly low functioning, ie, poo smearing people who rarely sleep, or people that have to live in residential facilities and wont ever live independently, who also have children considered high functioning/aspergers, and generally they say that they worry more for their aspies, because they are aware of their difficulties and deficiencies (their words) and the fact that society expects so much more from aspies. Their more severe children are blissfully unaware and help is not as hard to fight for, even though it is still hugely challenging and draining for them as parents to manage their needs. They are free of societies expectations in many ways. Aspies are more likely to be expected to work, even though they often cant. Pass well enough to have relationships, but struggle with maintaining them. Struggle with education with very little or no support. Struggle with being bullied. So maybe this is why the neurodiversity movement sometimes looks to be focussed on these issues and concentrating on the positives, so these kids dont actually grow up with such poor mental health that they are 28 x more likely to attempt suicide than the rest of the population and 9x more likely to actually kill themselves. Not to mention the huge rates of anorexia which has a huge fatality rate too. Any push to help people value themselves for who they are and to value the positives is a good thing, but yes, there is a fine line to make sure that we are not forgetting other vulnerable people, or dismissing the challenges in other parts of the spectrum.

Absolutely.

I have a handsome 16yr old ds with asd. His phone is constantly pinging from messages from girls, he’s just started at a sixth form college and seems to be very popular with the ladies. He hasn’t even kissed a girl yet and is petrified.
On holiday in Turkey this year he had a 21yr old after him! He looks perfectly “normal” ( hate that word ) but struggles with so many aspects of daily life.

This kid got grade 9’s in his best subjects, can’t tie his shoe laces or shave himself. My family dismiss his condition as we have other more severe autism in the immediate family and ds has achieved so much! So what?

I worry terribly about him. He had his heart broken recently as he read a situation all wrong and it affected him deeply. I wish I could take it away sometimes.

It’s hard to say that in real life.

YANBU. My friend's nephew is 18. Severely autistic. His parent's have both died in their 40s and he will go to a special institution. He is totally limited as to what he can do, incontinent, hardly talks and hardly interacts with anyone. I guess this isn't what she had in mind when she thought it was great and no great bother.

YANBU.

Autism is a very personal thing, across a broad spectrum.

I feel as if the "quirky"/Sheldon Cooper side of autism is generally seen as cool and ok and easier to accept than the other varying degrees of the condition.

It is hard and its ok to say so.

can anyone actually point me to the places where it is said that autism is never a disability and never a bad thing?

Is this just a feeling youre getting whenever people try and mention there can be positives or that some things that are seen as a disability, could actually be seen as fairly neutral given the appropriate support or accomodations

I am in a Facebook group where certain posters who are autistic regularly shout down people who say autism is a disability. They seem unable or unwilling to accept that everyone’s experiences are different

No, autism isn't a bad thing.

And it shouldn't be conflated with significant learning or intellectual disabilities or other conditions or neurological differences, which most so-called "severely autistic" people have (diagnosed or not), and which can feed back into their autistic traits (making them appear more challenging than they would be alone).

Obviously it's impossible to separate out the exact impact of each condition when someone has more than one, but it's always autism that gets blamed for those people's difficulties. And it's always the explanation used if someone judges their behaviour in public.

Taking this a little bit wider, I think that the pendulum has swung somewhat in society. We now seem to have to 'be positive' about everything. That might not seem a bad thing in many ways, but the downside is that it's harder to express anything negative without being pounced on.

The worst for me was when my husband's hit the terminal stage of hiis widespread cancer, and all treatment was withdrawn. I went into work (I was on 'sick' leave) to update them on what was happening. I told my boss that my husband was now dying and she jumped on me and told me I wasn't "being positive enough" and that "miracles happen". I just gaped at her. What I needed was to come to terms with such awful news, not be blamed for believing the doctors who'd been fighting my husband's illness for 18 months and actually know stuff.

So yep, sorry to slightly veer from the subject, but brainless positivity gets to me these days. And I'm actually a very positive person on the whole!

I dont think being aspie is ever really seen as cool and quirky. Maybe in comparison to some other disabilities, but that is never the impression ive got for myself. Far far more people are dismissive of its challenges or use it as a reason to not take you seriously, or act like you are flawed.
I mean look at the numerous support threads on mumsnet for partners of aspies. God forbid an actual autistic person ever has an opinion on those

Well it's never said officially, but all those annoying Meme,s on social media ie" Autism isn't a Disability it's just a different ability " etc, i see these every day over and over ,it gets somewhat annoying

@Sirzy those people do it even to other autistic people. They are a minority

do you not see any benefit about autism positivity at all?

As people have said over and over on this thread Rosie ,they do not view their autism as positive ,it's great some people do ,but a lot don't ,and my son is one of those so called severely autistic people are you suggesting he isn't autistic?

I share Sirzy's experience. I've stopped using Autism groups as a source of support because people were shouting down anyone who dared to say that they hated having autism. I also got tired of the NT hate and yes the oh so cool and quirky attitude. I wouldn't be here if it wasn't for NTs helping me, my Mother,Doctor,Counsellor,support worker, friends etc.

Of course if someone feels comfortable in their own skin then that's wonderful because everyone deserves to feel that way, but those of us who do not wish to celebrate having autism deserve to have our voices heard too. I shouldn't be silenced just because I admit to hating having autism.

One last thing and thinking specifically of the children currently diagnosed with ASD in mainstream school and who would have been considered to have Asperger's syndrome a few years ago. How are there currently so many? ( 9 out of 30 in GSs class each supposedly with an ASD diagnosis according to parents)
How are there not a similar number of children diagnosed with ADHD that there were 20 years ago?
Am I the only one that can see this doesn't sit right?
Either psychiatrists got it totally wrong when diagnosing 20 years ago or they're getting it totally wrong now. Did we had a generation of children with ADHD who would now be in their 30's but not one comes on to MN? I've never seen anyone write here about being an adult sufferer if ADHD either from childhood or having had a leg diagnosis. Now we know that ADHD exists and we know ASD exists but why the difference in what is currently being diagnosed

Late diagnosis not leg

There is born in wrong with people being positive about their own autism ,but they don't speak for everyone and for some there is nothing positive about their child s autism