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.

I'm autistic and yanbu. It has shaped my whole life and caused many many difficulties and challenges.

I get that a lot of people try to look at the positives but that shouldn't that peoples struggles are dismissed.

@araiwa Is this a controversial thing to say??

Yes. Parents have been jumped on (on here, and other platforms) for saying that they struggle with autism/their autistic child.

As a NT parent, I was told that I have no idea what my child is struggling with, and I need to listen to them and treat her how they tell me - these were random people on a fb group that I was (note, was) part of.

YADNBU. My friend and I were discussing this recently (she is on the autism spectrum, but has a mild form closer to Asberger’s), and we both fear autism is becoming the Down syndrome of ’olden times.’

What I mean is that first individuals with Down syndrome were castigated and frowned on. But then, and this where autism is starting to get to, they were looked at as a “blessing” - that they were all sunshine and light and capable of special kinds of love and sweetness because they saw the world through a “child’s eyes.” Of course, the reality is that Down syndrome is a spectrum, too, and that individuals who have it are just as complex as those with it. Of course they are capable of great love, but they also have needs and desires, for a life, friends, security, and even (terrifying for some), sexuality! But to be honest, unfortunately a lot of people are still stuck in that “all people with Down syndrome are eternal innocent children, and a special gift” mentality, instead of seeing them as complex people.

Autism is now being treated the same way by those who seem to think that all individuals who have it are just slightly socially awkward and good at math, or who have a “special gift” but see the world in such a “special way,” and that’s all there is to it (the words I’m putting in quotes are those I’ve seen used more than once by those who are very seriously oversimplifying autism). They either don’t know about or aren’t considering the far end of the spectrum, with people who have autism and are non-verbal, possibly doubly incontinent at a late age, and who can never live independently.

My friend said she thinks about making stickers sometimes that say: “Autism: It’s not about math,” because she gets so frustrated with some people. But I hope, and maybe it will take quite some time, that as more information about autism reaches a general level in society, in the same way that more information was spread about Down syndrome, and as there are more characters with more types of autism in media, including non-verbal (I think having well-rounded characters with Down syndrome in media made a big difference), that things will hopefully change in this discussion.

YANBU at all. Autism can be terrible. My manager has an autistic son. He is 20 years old, non-verbal, very violent, doesn't sleep at night and is also a runner. What is good about that? He doesn't have any real quality of life and neither do his parents. It's really sad.

SinkGirl as I said each autistic person is different. I was trying to articulate a thought that applies to some autistic people. I fully accept that it does not apply to your DD but this doesn’t mean that other people cannot feel that way and this is what makes them, find negative thoughts about autism, difficult to accept. Not all autistic people embrace their autism, and not all, wish it away - it’s part of being a spectrum, there is a lot of diversity.

The other thing that is relevant is that, historically, NTs have spoken on behalf of people with ASD and one of the dominant thoughts in the discussion was the wish to cure ASD. It’s not difficult to see how, if you are a person who embraces your autism, you would find it offensive that NTs spoke on your behalf and wished, essentially, you away.

Yanbu

I don’t have any experience personally with autism so never give an opinion, but when I come across people who say these sweeping positive statements about autism I always get that feeling that the person is being disingenuous for some reason.

It’s difficult.

I give talks to companies about the benefits of employing neurodiverse individuals in the workplace (Dyslexia, ASD, ADHD, Dyspraxia) I do focus on the positives and talk in generalisations, but mention that each individual is different and will require reasonable adjustments . Only a small percentage of adults with a diagnosis of ASD who want to work are employed, yet they have the capability of being productive employees. Without wishing to minimise the difficulties, overall I think the public shift in attitude and greater general awareness is beneficial.

That's just it though Starling there isn't a general.awareness of autism ,people think they are are aware because they have seen the big bang theory ,watched Anne Heggarty in the Jungle last year etc but ,that's not the whole spectrum lots and lots of people have no idea that autism can also mean ,non verbal ,special schools etc ,the amount of time ,s people have told me well Einstein was probably autistic whilst talking to me about my non verbal,never be able to live independently child is unbelievable I think there is a complete lack of awareness .

I think its bonkers to assume that you cant say autism is a disability. Its clearly a disability, hence autistic people often need special schools, supported living, DLA, PIP.

The neurodiversity positive movenent is not trying to say it isnt a disability just by pointing out that there are positive aspects too and that they'd be less disabled by it if society in general was accomodating and accepting and services werent such a battle to access.

If some people are literally saying that its not a disability then i think that's individual opinion of a few ultra defensive twats. The article i posted a bit further up should really be read if you want to understand what the neurodiversity movement is and isnt about

Yanbu at all, the positive spin that has been put on ASD is called the neurodiversity movement and I think it can be very misleading. Those at the high functioning Aspie / Savant (who might end up being mathematicians, engineers etc) end of the spectrum are in a minority.

Most people with an ASD diagnosis also have accompanying intellectual disability (ie low IQ) as well as potentially other diagnoses (eg epilepsy, adhd), so they are likely to have a lot of problems.

I have a sibling with ASD, as an adult they have very very complex, high needs, it has profoundly changed my parents lives and prospect of retirement and will impact me for the rest of my life as well.

I give talks to companies about the benefits of employing neurodiverse individuals in the workplace (Dyslexia, ASD, ADHD, Dyspraxia) I do focus on the positives and talk in generalisations, but mention that each individual is different and will require reasonable adjustments .

my DD will never be independent, will need 24/7 care. What you describe is may only be suitable for a tiny tiny percentage of the ASD community

Life is incredibly hard-everyday living takes it toll on the most resilient of us out there-so YANBU in any way thinking thisIMO.Ive worked in various residential units over the years&by far the most hopeless&ineffectual i ever felt was working with autistic adults who had low/no verbal..this unit had high levels of challenging behaviour &Makaton was compulsary so as to enable (limited)communication.Daily incidents of staff being physically assaulted were commonplace as were trips to A&E..there was nil job satisfaction&no improvement (barring celebrating not being attacked at work)Contact with the clients families was non-existent.I now work in another field.I wouldnt wish non-verbal autism on anyone.Its one thing to be able to manage a child-but when its a huge adult man/woman its another.

Autism is a spectrum, dd is autistic. Yanbu your ds is disabled by his autism (at the moment) but others are also correct in saying no big deal. It depends, the diagnosis is unhelpfully wide. But don't give up hope. Dd only got speech at 4 and was in nappies until 6 - she's at university, I home schooled her until nearly 6 though because the original school allocated was not teaching them properly and she is very clever.

I wouldn't get into a conversation with this woman again about ASD there is a massive difference between the ability of children on the spectrum and it is very very challenging. For your own sake I would look for support but not discuss your son with her again. She cannot understand when her experience is of a totally different severity.

The whole neurodiversity movement which seems largely driven by those on the high functioning end of the spectrum who see their ASD as a mere 'difference' or even a superpower a la Greta doesn't help.

Believe me, the whole Greta think doesn't help most of those who are "high functioning" either. I constantly hear how people like her are capable of doing great things, so dd will be too. Only, she is 11 and still can't tie her shoelaces or dress herself due to overwhelming sensory issues, and doesn't understand why yet again another friend won't talk to her through no fault of her own...

@flamingjune123 If you believe what I see on here, it's at least daily that someone is writing fluently and with feeling and then adds ' I've got ASD'. Who are all these people and where are they in the real world cos I certainly don't see them.

Are you really dismissing that it's possible to write well and with feeling and be autistic? My friend is dx autistic and writes beautifully. His language skills are actually his strength. He is a certfied proof reading, and does it still in his spare time. My dh manages a large team, and was headhunted for the role. He is exceptional at his job. Yet today our landlord arrived to do some garden maintenance (I forgot to tell dh) and he couldn't cope. He shut down.

It isn't helpful to dismiss people like that!

Yanbu. The one thing that had worked for my son is ABA. My friends husband is autistic but he wasn't diagnosed until he was 30 and is relatively high functioning, and she contacted me to let me know that I may be unaware but ABA is cruel and her husband wanted me to know the autistic community find it offensive that I would try to train the autism out of my son erm yeah, he couldn't eat with a spoon before and now he can do that and brush his teeth. Why do I have to just embrace the things he can't do without helping him without worrying about being offensive to the autistic community?

I’m with you OP.
5yr old autism, epilepsy, severe learning disability, severe speech language delay, behavioural problems, sleep onset difficulties.

I think there is a massive difference to someone with autism compares to someone with autism & severe learning disability alongside co-morbid conditions.

Some with ASD may lead fully functional independent lives, work, find love etc.

That is not the case for my DS. He will need a 1-1 carer at all times - perhaps 2 when he is older & stronger during outbursts.
That makes me sad. There is no shame in feeling like that.

Life isn’t a race to the bottom, I’m not trying to take anything away the difficulties of Autism as a stand alone disorder.

The current hype of asd as positive is not a true reflection.

YANBU. Autism presents itself in so many ways. There were three autistic people in my class at uni, and one of my best friends is autistic. They all have degrees now. But I also know people with autism who have severe learning difficulties and that will not be their path in life. YANBU for feeling sad that your DC's life will be limited in many ways by his autism. I'm sure your colleague thought she was being helpful, but she definitely wasn't.

I find this really difficult too and YANBU

I have a child who has ASD - and another who will probably get a diagnosis at some point. They are both notionally “high functioning” but struggle; my older one is actually a bit sheldon like, but struggled to toilet for many years and can suddenly go from chatty and interactive to extremely violent/terrifying to completely shutdown in seconds. We’ve adjusted every aspect of our lives to make life copeable, but I am frequently absolutely exhausted by it, on every level. Why should anyone else get to tell me how I should feel about looking after my children?
The worst place for voicing ANY view on this is twitter, tho. If you say something which people misconstrue as “mommy angst” you’re shouted down; or if you say something even vaguely positive about ASD you have other people shouting at you over the ether.
One thing I am interested in; the use of the word quirky. It’s come up here & is obviously a red button. For me it means odd stuff in terms of behaviour which are sometimes endearing, but not always. But would exclude something like a meltdown/shutdown which is frankly often just terrifying.
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?
Anyway. You’re all bloody amazing and I’m pleased this is a constructive thread. Too much of the time it becomes exhausting to talk about ASD so thank you 🥰

I think a lot of people don’t appreciate how autism can impact upon every little thing every day. For ds he is a complex child who although he can cope academically at the moment with full time 1-1 he has a mixture of needs relating to his autism and co-morbid conditions which means he is highly unlikely to ever be able to be fully independent. He is currently tube fed because his autism has impacted his ability to eat.

He is nearly 10 and still needs constant 1-1 and help with every aspect of daily life.

I think it is similar to saying "all humans", or "all blondes", trying to categorise all autistic traits. There are those who are profoundly disabled, and those who appear, at least to the untrained eye, NT.

But even within that, you cannot generalise. I am suppose to be delighted because we know why my child is the way they are, and incredibly clever. Unfortunately, so clever he is extremely aware of how difficult his life is already, and has begun speaking about suicide.

I completely agree that if society was more accepting, and the "same just different" concept truly followed, many people would be far more content with their diagnosis.

But cold hard reality? I would wish for my child to be "average" and NT.

excellent article branleuse, thanks.

"but others are also correct in saying no big deal."

They are never correct in saying it about someone else's child.
If we don't acknowledge that some people will always have severe needs then we cannot hope to meet those needs. I have found within my local authority that some of the children in need of the greatest level of support are simply not being catered for. For example there is no short breaks provision for those children.

I also wonder if it would be better to subdivide autism into categories as a far as we can. It's such a once size fits all word yet it covers a complex mutlifaceted spectrum rather than a simple linear one with very different presentations.

It's a lot to expect the average bog standard person in the street to wrap their head around how their neighbours son who struggles with communication but attends a mainstream school with support and their bosses son who is non-verbal, in nappies and can't access mainstream education both have autism. I get that people don't fit categories perfectly but calling one type a autism and another type b might help people understand how differently the condition can affect people.

I'm not dismissing people I'm genuinely surprised that I see so many people on MN state that they are 'Autustic' I wasn't intending on being derogatory towards those with correctly diagnosed ASD but just expressed surprise that so many adults appear to be going to a GP in order to have this condition diagnosed in adulthood. I have also expressed surprise at the need for this. What does it actually change. My friends, a couple, clearly are ASD. They are both very artistic and have successfully developed a thriving business. However they have few friends and tend to come across as quite rude at times. They know they have ASD but would see absolutely no reason as an adult to have this diagnosed