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 comment is in response to different nameforthis

YANBU User172818289
I am in awe of some posters on Mumsnet who have autustic children ( sometimes more than one autustic child ) and how they "cope".
I think they are amazing.

bean they cope because they have to. What is the alternative? Lots of parents of children with extra needs really don’t like the “amazing parent” label. You just have to deal with the hand you’re dealt.

Ironically now the DSM classification has got rid of Aspergers, and the concepts of high and low functioning (quite rightly) are being removed, it is even now more difficult for outsiders to see the Spectrum part of the title.

I wonder if there is something to be said in categorising by capabilities, at least that way the support could better fit requirements, and avoid the "well he looks normal", or "but he writes beautifully"...

Obviously then comes the "labels are awful" aspect, which is true, but diagnosis is helpful.

flaming Ds has just been diagnosed at 15, do you consider that too late? His life is very difficult and I do think his diagnosis is important for him.

That article bothers me actually.

I’m all for the social model of disability. I have multiple friends with physical disabilities who lead lives far richer than mine. They are often more disabled by society than their condition and better facilities / factoring in their needs in terms of public facilities, transport etc means they can function just as well as I can, or close to that.

I don’t think you can say the same for ASD, particularly at the more severe end. You can’t make adjustments to society to offset the impact of being unable to communicate, unable to care for yourself, and so on. Sure, we can adjust social expectations and set things up so that AAC and signing etc are taken seriously, understood etc. But you can’t manage out the inability to understand language, the inability to use the toilet, feed yourself.

It’s disingenuous to say things like I have clients who communicate with single words, apps, drawings or simply pulling me to what they want. I don't want to change their communication style; I want to learn it like a second language.
Only being able to pull someone to what you want is not a language. Language is far more than getting immediate needs met, but that’s all some autistic people have.

Or I have clients who will “pass” as nonautistic, and clients who will probably never live on their own. I make no assumptions about who will have a more fulfilling or enjoyable life. This is like denying white privilege exists. Of course bad things can happen to either group but on balance those who can’t live independently are always more disadvantaged than those who can.

flamingjune I agree to a certain point with you but getting a diagnosis was life changing for me. I finally understood why I was different and why I found things hard which came naturally to others. I also have ADHD.

My son is exactly the same but has learning difficulties....I don’t.

OP YANBU

Autism can be seen as a variation for many who have found a way to get through life, live independently and enjoy their difference.

I accept my autism and ADHD and no longer worry about why I struggle with certain issues.

I worry much more for my son though.

But god forbid you should say that in some autism groups. Many are run successfully by autistic people, I understand why they say what they do but I find them overly harsh when people worry about their children.

You start to get terms like “ableist” thrown at you .

Well great for them as they are living independently and getting on in life. I don’t know that my son will be as successful and as far as I am concerned I am allowed to be worried.

The answer is I don't cope. I mean, obviously I do, but the personal cost is huge.

Flaming, you have made an error in assuming that autistic adults don't care about having friends. There is also an error in thinking that all adults that are "successful" don't have private pain.

It is also true that the more adults are diagnosed, the more they are confident to taking about it, the better for children who share the diagnosis. The easier it is for the adults to understand why their friends/ partners/ work colleagues are the way they are... and those are just off the top of my head.

I don’t think it would be possible to even attempt to break autism into sub categories because it is so much of a spectrum. There is no way Ds could be put into a smaller box diagnosis wise unless it was his own unique diagnosis which wouldn’t work!

I also think that trying to split things down too much would lead to less understanding and more confusion

YANBU. My DS is HFA (diagnosed about six months ago; he is 15. We suspected for a long time but, partly because he is a 'Sheldon' type and coping in mainstream school, it wasn't pushed for.) DS is doing OK, has friends, is clever... but there are some things he finds tricky, and times when I worry about his future.
But I also sometimes go into special schools for work (I am a note-taker for school governers and often have to cover staff grievances or disciplinary hearings, or pupil exclusions) and I'm very aware that some types of autism are seriously disabling: as PP have said, those who are severely autistic; non-verbal, incontinent, prone to meltdowns and violent outbursts etc. Some people with autism will struggle all their lives and never be able to live indendently.
I also agree with the idea that getting rid of the Aspergers label is unhelpful because there are such big differences between the people with Aspergers and the ones who cannot function independently (can't eat, speak or use a toilet).

You're probably right, maybe just a shed load more education for everyone else? Threads like these can only be helpful.

I have two nephews and a Grandson with ASD ( non diagnosed although strongly hinted at by paediatricians ) None have learning difficulties, all have some difficulties with social communication but are happy and cope ok. Both sets of parents are not seeking formal diagnoses. They see no need

For me diagnosis at 38 felt like official permission to be myself rather than battling and failing to be 'normal'. It was the first step towards finding peace and acceptance within myself.

I'm not in the UK and where I live there are specific laws and support available for adults with autism. Diagnosis opened up these services to me. For example I now have someone come in once a week to support me through the household admin. For the first time in my life bills are paid on time, appointments are booked and kept, order and calm is created.

I knew a few people who described themselves as Apergers or high functioning at uni. I'm guessing no one asked them how they felt about having these terms taken away.

flaming, but that is their parents perogative, not theirs.

At some point, it might prove useful when they no longer "cope ok". If they ever feel like that.

My son was happy, "quirky", clever, has always had friends, but as he's got older, the issues have become more difficult, until we're now at this awful point where he is really unwell from trying to cope in a world that is difficult for him.

I didn't think diagnosis was necessary, but knowing his diagnosis has been the only break through, and given him hope.

Not for the first time on MN, just because your experience of the world is not the same as others, doesn't mean theirs is false.

In the late 90's I worked with children at risk of permanent exclusion or having sadly already been excluded. At least 50% would be taken to the GP, referred to the local CAMHS and diagnosed with ADHD. This, in turn, led to medication and an application for DLA. Maybe some of these children had ADHD however it's doubtful that so many did. It was the buzz diagnosis. I have a friend who has a son with ADHD and not diagnosed nearly as much now as it's now agreed it's actually really rare and very debilitating. I honestly believe the same thing is happening atm with ASD. I've looked after children with Autism and it can be absolutely soul destroying

@flamingjune123
I pursued a diagnosis as an adult, for a few reasons.
one was that i kept being prescribed antidepressants and always felt like they made me feel less able to cope, and that I just had a feeling that my issues were not about depression or anxiety in itself and that I was getting these things because I couldnt manage life properly. Once my kids were diagnosed one by one, it suddenly became clear, and I just felt a great desire to know once and for all. It has allowed me to give myself a break about some things, and to understand myself better. No different to getting a diagnosis for anything else. What is wrong with pursuing an autism diagnosis over a bipolar diagnosis or an anxiety disorder diagnosis. If you dont know why you are like you are, then how can you even help yourself?

The other reason is because ive struggled so much finishing my degree, and cant seem to do it. If I want to go back and finish it, I think I will need extra support, which I cant access by self identifying.

It also just makes things feel less vague for me. I hate the whole "ive probably got it, and the conversations that follow. The wishywashyness of describing loads of bloody symptoms instead of having a name for it. I hated that for my children and I hated it for myself.

I think I would prefer it if none of us were autistic, because there are loads of issues that we have, that NT people dont seem to have. Its been a nightmare at times.
The neurodiversity movement has helped me reframe a lot of things. Helped me not to hate myself and my life. Its helped me feel more positive about things. Its REALLY important for my children that I boost them and they dont feel like failed versions of normal. We feel mostly fine when we are around people that get it. Its like we speak a slightly different language and thats ok. It IS very challenging though.

I also agree though, that a lot of autism communities online are bloody hard work though. Ive been banned from a couple, and a lot of the issues mentioned here, I do believe to be true. Some autistic people are so closed minded and black and white, that they cant deal with people having a different nuanced view on it, even from other autistic people, and yes, i have also seen the anger at neurotypical parents, which I think is really shit. I imagine they are playing out their own trauma over their own childhoods, which is understandable, but I cant engage with it.
It is not really what the neurodiversity movement is about tbh, but, it is just a movement of individuals, and just like the feminist movement doesnt speak for all feminists, the neurodiverse movement doesnt speak for all autistics

Autism in it’s severe forms is shit and I wouldn’t wish that on my worst enemy. It is okay to say that. However having family on the ASD at the mild levels I do think we are doing parents with kids who have severe autism a huge disservice by lumping everyone together as one condition or spectrum. For example all of the local facilities and resources for parents of kids with autism tend to be geared for those with milder forms - that’s unfair. It’s like earmarking DS resources for those who just have the Mosaic version!

YANBU my cousin is severely autistic and will never live an independent life and doesn't even seem happy much of the time sadly, despite a very loving family and specialised support. It is an incredibly debilitating condition in her case and it makes her parents and siblings lives incredibly difficult. It's a spectrum obviously and it isn't always like this I know.

all have some difficulties with social communication but are happy and cope ok.

It will probably sound harsh but i will say you don’t know those children/people that well if you think they are coping ok.
I’ve yet to meet someone on the spectrum who isn’t struggling. That’s why it’s a disability. And. Not having the diagnosis doesn’t make it less disabling.
Of course from the outside, they might look like they are coping. But it doesn’t mean. They do.

It's too vague a diagnosis imo,unless I'm talking to.people who.really " get it" than i.just say ds has severe learning disabilities,it's easier as there is a less of an expectation also.it stops all that ,my neighbours Grandson has autism and is married with three degrees etc that you get from people ,If we wan t the general.public to.be aware of autism than we need to.start talking about it in all it's forms not just the more " acceptable forms " .

HeyNotInMyName I think your post kind of sums up the attitude I find objectionable. I am an autistic person, I am coping, I don't really need you to tell me I am not and that I must be struggling because you say so.

I am coping in most ways too, but I have developed loads of strategies for this, and I have had to let go of the weight of other peoples expectations and embrace that their way is not the only way

In some ways the neuro-diversity movement has been reductive in only highlighting ASD from the high functioning end of the spectrum. There really isn't much to celebrate in an adult who is tormented within themselves because they have no means of communicating and has violent outbursts that means they have to be regularly physically restrained for their safety and that of others around them.

YANBU OP.

Alternatively, boo you could be said to be speaking for all those known to Hey, who are struggling. Again, just because YOUR experience is all ok, does not mean everyone feels the same. She is NOT speaking for you, the are others.

I should never have started on this, I've got flaming telling me that lots of autistic people have been wrongly diagnosed, and boo dismissing the experiences of others who are autistic.

This is why I fear for my son - not him, but other people, and their judgments and assumptions.