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.

Have any recent studies been done on how common place autism is? Yes, diagnosis has improved, but actual numbers? Is it more prevalent, and if so, why?

Aside from experts, I think teachers would be well placed to answer this. Even without diagnosis, teachers will have known pupils over the years who probably met the criteria.

People who say it's not a disability are deluding themselves.

Yanbu. I think people have a tendency to assume that when someone is at the more complex/ disabling end that it's learning difficulties, iq etc that are causing the problems, rather than the autism.

Friends ds is low functioning, and doesn't have any other relevant dx or concerns, but people assume he does. His basic intelligence is definitely more in line with a high achievers, but his communication difficulties are so profound that he's unlikely to ever go without head protection, let alone live anything resembling a normal, independent life.

The one area his intelligence can be immediately seen by others is with horses, when his communication difficulties don't restrict him the same way. Not in a special skill way, just because providing the outside environment is controlled, his communication problems don't render him low functioning. He'll never be able to be left unattended with even the safest pony, because of the need to ensure there's no interference, let alone ever pursue it as a job. But people still seem to view it as some combination rain man/ animal whisperer talent, that compensates for everything else.

I think this is very complicated. I am autistic, the high functioning kind. It is important to acknowledge that autism is truly a spectrum and for some people it is a seriously debilitating disorder. If you’ve met one autistic person, you’ve only met one autistic person and anyone else has to be approached as a unique individual. I can see how many aspects of ASD are very disabling.

Having said that, I think two thoughts remain that, maybe, apply more to high functioning people. The first is that autism is part of who someone is and it is impossible to imagine the person without the autism. To wish the autism away is, in this sense, to wish the person away, which is what make some autistic people find negative remarks hard to take. The second is that some difficulties are not part of autism as such, they are part of living in an NT world, so the answer to these problems is not to change the autistic person but to change the world so that it becomes more accommodating and inclusive of variety.

I'm autistic, late stage diagnosis, and I fucking wish I wasn't. So YANBU

YANBU

Has no one mentioned the social model of disability?

Wow. The topic doesn't affect me, but I like ideas, so I thought about it. The social model of disability seems to say that disability is just in the eye of beholder, is actually a problem society has in not accommodating people rather than disability being a problem that individuals have.

I kind of get that... there are people who would insist to you that they would never want to be another way. Or that their loved one's disability changed their own life for the better.

Yet, At end of day, I don't think hardly any of these people would cling to their disability if a magic wand could make it go away. I can't reconcile the SM with what I think is true preference for 99% of disabled folk.

YANBU
People say stupid things all the time. Most commonly:
"Oh! But her face looks so normal!"
And
"Don't worry, my brothers girlfriends neighbours grandmas cat didn't talk until they were 6 and now you wouldn't know any difference between them an another child" like being non-verbal is the only problem

No amount of support will make an autistic person neurotypical.

The first is that autism is part of who someone is and it is impossible to imagine the person without the autism.

That’s not my experience at all. Obviously my children were always autistic but you wouldn’t have known it. They were perhaps less acutely interested in people than most babies / one year olds but they still engaged with us, recognised themselves in mirrors, mimicked us, etc. And then they didn’t and couldn’t. They’d spend ages playing with complex toys and then one just stopped touching toys completely. He went from a bright engaged toddler starting to speak to silent and doing nothing but running up and down the room, pretty much overnight.

So I can absolutely imagine my children without the issues they have now. I can watch videos of them as they were. I would give anything to go back to that. I’ve laid awake at night wondering what I did wrong, how I fucked up, what happened. It’s completely broken me. 18 months on we get glimmers of progress, and have to just hope we get more. I live in fear that one day they’ll wake up and have regressed further.

I am so glad this is not the reality for all autistic people and their parents because it’s absolutely brutal.

I can easily separate the autism from my amazing dd. It would mean she could have the friendships she desperately wants, she do the activities she so desires but doesn't because her anxiety is too much. It would mean that she would absolutely be exceeding all expectations at school, be aus she is very bright. Instead she just gets by in the middle, because her anxiety around failing, school refusal and social issues take so much of her energy.

I'm autistic and I'd get rid of my autism in a heartbeat. It is not, for me, a 'good thing' and that's from the perspective of someone who often "passes" for neurotypical.

I don't think it "makes me who I am" and I hate the ignorance of people who say that. It's made parts of my life very miserable, particularly my childhood, where I couldn't socialise very well and therefore lots of aspects of my life was incredibly difficult and embarrassing; things that came naturally to neurotypical children just didn't to me and I stuck out like a sore thumb. Even as an adult I find everyday socialising a minefield, get easily overstimulated, and feel like I'm faking it all the time. I'm not "specialist" at anything, I don't have a Sheldon or Rain Man-style talent, and every day I just feel like a humanoid alien that's just about passing as an Earth native.

OP, you sound like an amazing and patient parent. You have my complete sympathy, your colleague doesn't have the sense to see that what she said was exclusive to her experience and pretty patronising.

YANBU!
It’s a spectrum. There is a big difference in ability from the ? Bill Gates, Dan Aykroyd to the other end of the spectrum.
There is nothing wrong and wishing your( my DS ) did not have a life time condition that will make their life a bit more difficult. Love them to bits . That’s why there is pain and guilt.

I really like this article which explains it quite well

blogs.scientificamerican.com/observations/clearing-up-some-misconceptions-about-neurodiversity/

Branleuse
It’s a very good article!

DS is 14 and was diagnosed when he was about 4/5. He goes to mainstream school and gets middle grades at most subjects. RE and PE are very low grades, but with no co-ordination and not having any capability to see things from different points of view this is no surprise.

He has no friends, but I dont think he particularly is bothered by this.

What will his future be like? I really dont know. He enjoys cooking and thinks he would like to go down this route. However, Im worried about the social side. I dont mean having friends as such, but more of coping with people. Going to work and talking to people at work. Its not something he can do. Obviously at work I can't go and hold his hand. He wont get a person there to help him personally the way his TA does.

I also dont know if he could live independantly. Or at least know how to look after himself. Like with eating, washing, general household maintenance. If he does live on his own we will still have to do a lot of these things for him. Or at least plan for him.

If I could take away his autism? Hell yes!!!! He's not even that badly effected and is classed as high functioning.

Ds was diagnosed three weeks ago. He is 15, so would be considered high functioning. His life doesn't function well at the moment. He has no friends, finds daily life overwhelming, has eating issues and accompanying mental health concerns. You wouldn't know he is autistic if you passed him in the street but it's pretty obvious when you start talking to him (or trying to talk to him, you won't get much response).

Unfortunately there is zero help available to him. When the paed diagnosed him I asked for help and was told there was nothing. She gave me a leaflet for some local support groups and told me to buy him a book on asd and talk to him about Bill Gates. No one cares and can offer him or us any support.

I 100% agree with butmynameisveronica. I can separate out the autism from myself. Especially since diagnosis. The autism has been hugely limiting and disabling and I'd have loved to have a crack at life without it.

I am so so glad to read these replies. I’m an autistic adult. Diagnosed later in life. Live independently, pass for normal, etc etc.

But I would LOVE not to have autism. And I would love for my child not to have autism. It makes life a struggle. And there are many people with autism who are non-verbal, not independent etc etc whose lives are more limited than mine.

I’ve been shot down by the autistic pride crowd for daring to suggest that my autism isn’t a positive thing or a superpower. I’ve been patronised and told, ‘how sad that you’ve internalised prejudice so much that you can’t celebrate diversity’. It makes me angry and upset.

How dare these people decide that their opinion of how my autism affects me is more valid than mine?

OP, YANBU at all. Your child is wonderful and also lucky to have you. But I’m sorry that they have to struggle and that you have a struggle to support them in life.

I had a friend whose teenage son was still non verbal, just made clicks and groans/ moans, and wore a nappy most the time.

Autism doesn't have to be a disability to every person with autism, but for some it is a severe disability.

YANBU

Ds2's special powers is ploughing through school transport providers. Currently transported solo and pissing off no 9 in less than 2 years.

YANBU. I’m an adult, going through diagnosis.

Greta Thunberg is amazing - and a child. She hasn’t yet faced being an adult with autism, and how that’s different.

I’m very clever. I probably would have been anyway - my parents are both highly intelligent. It’s now I’m older, out of institutional structure, and have to be independent, that being on the spectrum has become incredibly clear. I would trade it in a heartbeat. I volunteer with people, some of whom are autistic, who are more profoundly affected- I’d give everything for them not to have to face the daily challenges they do, and to focus that energy into something else.

Your colleague is an absolute idiot.

My friend has a daughter with ASD. She is severely disabled. Thirteen years old and non verbal, still in nappies, will never ever live independently. My friend will be her carer for the rest of her life. She will never experience all her kids “flying the nest”. She will never travel, or do the things that retirees do. If someone told her her kid could do anything she wanted, they’d probably get a punch in the face.

It’s called a spectrum for a reason.

YANBU. I'm autistic, although I was only diagnosed as an adult a few years ago. I identify myself as low functioning, despite having a degree, because I have never managed to function well as part of society. I am considered severely disabled in many respects (I get the enhanced rate of PIP for both daily living and mobility, I have a social worker and psychiatrist, and I have a disabled bus pass and blue badge (although I am too disabled to be able to drive). Autism is extremely disabling to me as it has damaged my mental health, to the extent that I cannot work or parent well, and I am dependant on benefits as even the DWP recognise how poor my coping skills are and how much care I need. I get so frustrated with people who fail to recognise just how severe autism can be, and it's not simply a matter of getting your needs recognised, it's the inherent nature of the condition that can stop people like me functioning, no matter how well-meaning others are or adjustments they put into place.

I have an autistic DS and his autism is severe enough that he went to residential special school. People often just don't get how severe his needs are, as he is verbal and appears outwardly 'normal'. They base their views on someone they knew who might have an Aspergers diagnosis but always stayed in mainstream with no EHCP and went through all the usual exams (DS has left school with no GCSEs), which is a level of functioning a million miles away from DS.

I wish I could take away the pain and leave the joy for DP. He really suffers because of how autism affects him but also has unique ways of seeing the world, his own gifts and special interests.

This thread is heart breaking, and I hold my hand up to all those of you coping, whether for yourselves or your children. I have a friend with two 'high functioning' boys, and I know how much she struggles every single day, despite the fact that one is now at uni and the other starting A levels. for you all.