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.

@ rosiejaune - actually people with severe autism are the ones who are often correctly diagnosed. The ‘other conditions’ per current research are the mild to moderate forms and don’t be surprised if in a few years those people aren’t called autistic any more.

My DSD has autism, and i would say there are most definitely limits on what she can and cannot do, and although she is classed as high functioning, she will never be able to live an independent life.

I feel sad for the life she will never have, but also grateful for the one she does. It is very much a double-edged sword and it breaks my heart every time i hear "why can't she just do this", "she's 19 why can't she make a cup of tea herself", "when is she going to grow up".

Sadly, people who make these comments i feel are ignorant of Autism and truly don't understand what it means or what it is like to live it. Hell, i've had autism in my life for 19 years, and i still don't get it sometimes x

They're a pretty sizeable minority because I've had the same experience on FB groups. Tumblr, Reddit. MN and some forums.

shes clearly saying that there are intellectual disabilities that are often seen with autism, but arent necessarily part of autism itself.

We dont know if thats true, or whether Kanners autism is a completely different thing to Aspergers syndrome, or whether they are same thing but with different parts of the spectrum involved, or whether learning disabilities are part of autism or whether they are alongside autism.
Theories about it go in and out of fashion. Yes it is a shame that people with more severe disabilities and language deficiences are never going to be able to have the same voice in awareness as people who can speak and communicate adequately. Does that mean everyone else should shut up? Is that expected of other speakers for other topics?

Just to add that at the age of 41 I am awaiting my official diagnosis of ADHD.
It was ds’s autism doctor at Alder Hey who mentioned it to me ( I had suspected for a long time but i do have a habit of diagnosing people in my head ) and wrote to my doctor.

After loads of tests and questionnaires I was told that I fit the criteria for ADHD, I already have diagnosed OCD and many traits crossed over. I suspect I also have asd like ds who incidentally was told when he was diagnosed in 2011 that he is “typical Aspergers” but they don’t use that word anymore.

My whole life suddenly makes sense. There are so many undiagnosed people out there, lots of them women.

yeah they are, but i put it down to theory of mind deficiency. I dont find support in these groups either.

flamingjune123 - err... I just posted upthread about my adult diagnosis of ADHD and the effect it has had on me since childhood ?? Please read what people bother to write on a thread you are clearly interested in.

What they shouldn't do is try and silence the experience ,s of parents and carers of people with non verbal autism ,these peop!e can't speak for themselves they need others to speak for them , it's fine for the highly verbal people to speak for themselves ,but their experience is not the experience of others ,life is hard enough when you have a severely autistic child ,if doing speak for my child no one else will,and I have seen plenty of occasions on va do is Facebook groups where the parents of severely autistic children have been shouted down this is not fair or right

ThumbWitchesAbroad if I have misunderstood HeyNotInMyName's post then I apologize, although I am sure she can point my misunderstanding out herself. As far as I see it saying "I've yet to meet someone on the spectrum who isn't struggling' is a generalisation about everyone she has met so far and is likely to affect how she perceives new ASD people she meets as she's likely to assume they are suffering without knowing them as individuals. Her whole post was an effort to correct another poster and to insist that all people with ASD suffer even if they appear as if they do not suffer. At the very least now she has met someone with ASD who does not suffer because of it.

flamingjune, id say that they were more wrong 20 years ago. People definitely do have ADHD now, but we do have an unfortunate situation that ive noticed, where its almost like one diagnosis per person.
For instance, when my ds1 was diagnosed with autism, all the other issues he was being investigated for got forgotten, so now im in a position as a young adult, to have to say actually he does need his adhd, dyspraxia and hypermobility recognised, otherwise he wont get the correct support as an adult, because his issues are clearly more significant than for instance ds2, who is autistic, but able to mostly manage mainstream with support (ehcp), or even dd, who cant cope with mainstream at all, but i get the feeling that she will be ok later on and possibly independent, although god help whoever has a relationship with her etc

its not fair or right for autistic people to not understand other peoples POV all the time, and youd hope that theyd all be a happy supportive community etc, but these are autistic people. You wonder why they cant understand someone elses point of view? They have social communication disorders. If youre going for support, then id say an online community full of mouthy people with social communication issues and probably have very few real life friends, is not your best bet. They do not reflect all autistic people on any part of the spectrum, even if they think they do.

I don't cope, I hang on. But it is by threads.

PLEASE stop saying "mild autism". There is no such thing. It might be mild in the way YOU experience it, but it isn't mild to the person with it.

What does my dd a diservice is cateogorising it into "severe" and "mild" or "higher functioning". Because according to many of you she would be "mild" because she is verbal, eloquant, has no learning disabilities, can use the toilet. But it cripples her with anxiety, she is suicidal (she's 7), she cannot interact and communicate in the world, because communication is so much more than just words.

There isn't a worse or a better autism.

My son has undiagnosed asd, adhd, anxiety, and possibly more. Currently having therapies and going through diagnosis etc. He is 8. It is so, so hard. We find it hard to relate to him and him to us. If I could take it all away from him I would 100% because I don't see a great future for him. I'm just being honest. He has too much to hold him back. I worry about his future constantly and what his mental health will be like. I love him unconditionally, he's the best thing that's ever happened to me. But I wish so much that he didn't have the issues he has, for his sake

Branleuse or you know, NTs have trouble understanding ASD people because they can't focus on detail and can't retain information as well as well as we do and don't have as developed a sense of moral integrity as we do? Given that this is a thread of many NT people telling ASD people what they are like and what they can and cannot understand, I think my point is already made.

Booboostwo if it helps I feel like an utter failure every day because I can't communicate effectively with my dd, that I can't seem to help her in the way she needs, that I make her constantly angry and frustrated.

Didiplant absolutely no need for rudeness. I have read everything. My experience is real and opinion still stands, you may or may not agree with me.
20 years ago a huge number of children were being diagnosed with ADHD, I've rarely see posts from those people who would now be in their 30's. You are the exception. A similar amount of children are now being diagnosed with ASD and I think it's fair to ask did the psychiatrists get it wrong then or now. I'd bet ASD will not be being diagnosed in the way it currently is in another 20 years time.

Branleuse you make interesting points

I don't think there's recognition at all for how parents of children with autism cope, tbh. It's all well and good some high functioning people suggesting the rest of the world change and cope, but it's not really going to happen, is it? Parents of children with autism have high rates of divorce. Aspects of the condition that don't impact on the child have huge ramifications on the parents and siblings.

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.

Greta was only 15 when she became a media sensation. That's a child.

It is not unusual for some with high functioning autism to develop fixations/obsessions/addictions. This is not necessarily a good thing because the fixation can come to completely dominate the person's life to the exclusion of much else and drive their anxiety (autism is an anxiet driven condition) through the roof and then lead to a cycle where they cannot be separated from their fixation but the fixation no longer serves to assuage all their anxiety. Believe me, it is not a good place to be and tbh, I'm quite concerned for Greta because it appears her folks lost the reigns the long ago (that's common, too, life with someone with HFA who is exhibits extremely stubborn personality characteristics can be very difficult/nigh on impossible and cost you your sanity itself). On top of this many people like Greta can be vulnerable because they don't take social cues as readily as NT people and can indeed become easily manipulated by other people who use them to front their agendas.

Greta is only 16 and despite that very foolishly being considered 'adult in Britain, 16-year-olds are not adults and have not reached neurological maturity. As she said, 'I should be in school' and that she had lost her childhood. Well, she's right in that, but IMO her condition is the cause of this, sadly.

I don't have a token, but this came out today: autisticteensusedbygangsasdrugmulesbyexploitingloneliness

@booboostwo yes I agree, that is a real benefit that my ds1 in particular has. Im in absolute awe of his ability to learn everything about the things he is interested in. Im in awe of his photographic memory. I wish I was more like him in so many ways, and yet, theres a good possibility that he wont be able to hold down a paying job etc. My neurodiverse positivity means that I remind him and my other children of the things they CAN do well, and I genuinely believe in them and their value in the world, but I dont dismiss the things they have real struggles with. I dont want them to hate themselves. I want them to accept the things they cant do and concentrate on the things they can
If im not positive to them about themselves, then wtf am I supposed to do. Curl up into a pit of despair and wish none of us had autism? Whats the point of that. A lot of people with autism CAN and DO lead meaningful lives and make a difference to the world. Not everyone, but an autism diagnosis is far from being the end of the world. My life infinitely improved when I changed my attitude, and that was from listening to autistic speakers such as Ros Blackburn (who is not high functioning at all, but she IS eloquent and verbal) and Dean Beadle.

@flamingjune123 I think you are wrong. I know quite a few adults with ADHD diagnoses. Perhaps when there are people like you that thnk it doesn't exist/doesn't require diagnosis they are reticent to come forward.

Any other medical conditions you want to state are wrongly diagnosed? Epilepsy? Diabetes? No, just usually mental health and neurollogical conditions isn't it.

I don't often describe ds as autistic as it elicits the type of response where I have to pretend that I am 'ambitious' for him' and 'fighting' for him.

When he was tiny I used to feel a terrible pressure to help him grow into someone who is as NT as possible, lots of early intervention for his still growing brain, to help form connections. Well bollocks to that.

I prefer to describe him as disabled. Then I will describe how he is hilarious, a complete anarchist who is also kind and caring.

I grieved the son I thought I had and came to wonder how I ended up with such a one off. He is a complete pain in the arse but brilliant with it.

It is ok to feel sad and grieve. It is also ok to to accept your child for who they are.

Clowns I don't think ADHD doesn't exists neither do I think Autism doesn't exist. I asked the question as this is actually a discussion board, I don't need you to agree with me.
It is fact that a huge number of children were diagnosed with ADHD 20 odd years ago, the diagnosis that appears to be currently in fashion is ASD. Either the psychiatrists got it wrong then ( and many are still practicing) or one day we'll see that they are now over diagnosing ASD just as they probably did ADHD

You don't have to curl up in a pit of despair just because you hate having autism. I have a lot of issues that I'm struggling with and my autism is responsible for most of those. I can still enjoy things though and I hope to have a good life in the future, but for me there's no doubt that I'd be happier and better off if I didn't have autism and I'm not going to pretend that it doesn't cause me a lot of misery.

I'm not going to stop wishing that I didn't have it either, even if it won't take it away. I've no interest in being positive about it because for me there is no positive but I exist as a person beyond my autism. I'm not just my problems so I try to focus on that.

I have two sons with ASD. My eldest lives in residential care and has 1:1 support. My youngest lives with me and has so many anxieties around change that he is currently out of education, work or training. I have adapted my life to support them in every way that I can.

Would I like a magic wand to wave the autism away? Would I like my sons to function as 'neurotypical' 18 and 20 year olds? Yes, unequivocally, yes!

Failing that, I would like my sons to have the help they need to really achieve their full potential and to relieve me of some of the emotional burden of their care..