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.

Temple Grandin has a lovely TED talk about this. Autism is a spectrum.

Yanbu
My boy has autism and I'm not ashamed to say that I hate it. I love him with every fibre of my being and I love his wee quirks and his nature. But when a meltdown takes hold, or he can't get his words out and gets upset, I fucking hate autism. It's fucking brutal.
People who have cancer or MS can openly say that they hate the disease. Why should a mental / neurological illness be any different?

YADNBU. My son has an Aspergers diagnosis. So he is bright and is currently doing very well. However he had a horrendous and upsetting time at school due to his social skills difficulties especially before he was diagnosed. If I could take that time away from him (when he had no friends and cake home crying everyday for years) and have made his life easier then I would. Your colleague is an idiot that needs to look outside her own small frame of reference.

YANBU, but on the other hand, i think there is a lot of benefit to the current move to show autism isnt practically a death sentence like a few years ago. There are often positive sides to autism for many people, and a lot of the negative aspects are about lack of accessibility and understanding. Not all, but often. Im really really glad that when I tell people I have three autistic kids, im now less likely to have people say "ohhh im sorry" than I was a few years ago.

I think getting an aspergers diagnosis myself last year (yes some people do still diagnose it) really reframed a lot of things for me.

Many people are significantly disabled by certain aspects of their autism, and a lot more others are moderatly disabled by it. That doesnt mean that there arent positive aspects for a lot of people too.
I think the push to take away aspergers from the dsm hasnt done people many favours, or to remove functioning labels

My youngest DD has Autism. It's comes with issues of speech and language.

She's completed her L3 vocational qualification and is liked in her workplace.

But her lack of communication skills holds her back. It stops her from getting jobs and being promoted. We've worked on every other aspect, but that we couldn't solve.

At 21, she has two friends. Most of her SN School peers have been quite isolated and they underachieve, have a level of MH issues/anxiety related to the condition.

I have high functioning autism. I'm uncomfortable in most work/social situations, unless I'm drinking or (previously) doing drugs. I don't have friends, in a lot of ways, that doesn't bother me, but I'd love someone to go to the theatre with etc, occasionally.

Mine doesn't effect me intellectually etc, but it's had a massive impact on my life and I've also underachieved because of it. I had to come off a BA that i was well capable of, in the second year because i couldn't face going in and being with people all day, again.

I've worked with people whose autism means a lifetime of pads, headgear and being transported in a wheelchair. There's very few moments of actual happiness for them.

Some of my DDs female peers will never be able to have residency of any children they have. They can't travel independently etc.

I don’t have experience of autism other than knowing my friend has had a tough time with her little girl who quite clearly will be one of the children that struggles.

The spectrum element seems similar to other conditions that present very differently depending on severity. Often people don’t understand the most severe end. My mother suffers from a very severe mental health condition and get pissed off with a lot of the positivity messages around mental health which tend to airbrush the more severe end. Her condition has made life really, really hard. It is nothing to celebrate and it has limited her quality of life.

Clearly, she has failed to realise that the S in ASD stands for Spectrum.

As a SEN TA, I totally agree with the previous poster who said that when you know a person with autism, you know all about them but that's it. Also, while obviously it's best to try to be positive about a disability, it's still a disability.

As a parent, wouldn't we all take away our child's problems if we could, no matter how insignificant they may seem? Not the same thing I know but my daughter had a severe unexplained speech delay that caused her a lot of issues in her early years at school. Would I have changed that, even though it's made her the person she is today? Of course, in a microsecond if it meant she hadn't had to suffer any distress at all.

Yes I was going to say something similar Userzzzzz,I was a in patient mental health nurse for many years so have experience of working with people who have very severe mental health problems that are not managed by medication and often some people live very chaotic lives because of their mental ill.health but we never get to hear about people like this .

She sounds like a patronising cow. Of course autism isn’t always a terrible diagnosis but for some people it means they can’t ever live an independent life which is quite devestating.

YANBU.

My siblings have autism and one is very high functioning but his life would be a lot easier if he didn’t have it

I have a HF 24 yr old with a string of qualifications, respected in his field etc, font of all knowledge on his subject (and on quite a few other subjects,since he has the photographic memory thing too).

I am very proud of him and his achievements. Sad that it always has to be 'in spite of'. In my secret moments, in the dark of night, I still wish he had a NMW job and a wide circle of friends and played pool at the local pub. I do realise, and take some comfort in the knowledge, that even without his ASD he might eschew such things anyway. It is what it is. Comparison is the thief of joy.

My nephew is quite severely autistic, though functioning.

I love him dearly, everything about him. But if I could take away the autism I'd do it in a heartbeat.

My son is nearly 30 and has autism. He also has learning difficulties, but went to mainstream schools. As a child, all his milestones were delayed and he wasn’t dry at night until his early 20s. He now has a part-time job and has come on so well that he can cook for himself and travel away from home.

However, he still has the most terrifying meltdown, less often these days, but as we are now older and infirm ourselves, they are becoming increasingly difficult for us to handle. We know that we have to prepare him for life without us, eventually, but that is something very hard to face.

I worked, briefly, in a hospital coping with juvenile MH patients, mostly Downs

Ds3 (13) has high functioning Autism and ADHD. He is very academically able. He was top boy in the year last year with prizes for six subjects. He is musically gifted and will likely get a degree, a job and wife and family if that’s what he wants. However I’m still taking him to school each day and sitting waiting in the car for a “safe” moment for him to go in. Sometimes he can’t find the right moment and he sobs and asks me to take him home. He is still wearing ear defenders in the corridors and at break and lunch time. He txts me most days, sometimes multiple times, with his worries and when I collect him he is often tearful and angry because he’s held it in all day. The school see one boy, we see the other, and no one gets it.

I find it exhausting. The voices of the more able heckling those that care for the less able. The invasion and colonisation of the diagnosis by articulate angry individuals often with little or no experience of other presentations of autism. The demonisation of carers (usually mother’s) who face challenges every day from every part of society and now from within their support groups and on line areas. I am so tired of it. Of course I understand the huge challenges that can be faced by all autistics, but there has to be some honesty and transparency. There are parts of the autistic community who are all but invisible, struggling to get even a minor share of funding and resources.

@NotANeuroticApple I absolutely LOVE the OS analogy. Will share that with DS!

My wonderful husband is autistic. I love him just the way he is, of course. But autism makes his life harder.

Sorry premature.... to continue, but the other substantial cohort were autistic, some high function, but mostly not. The biggest thrill of my eight weeks there came on a cold wet windy day; I had promised swimming; we went ice-skating instead, and one lass with very severe issues managed the balance brilliantly but could not stop. She spoke to me once, when I caught her to come off the ice. A few words, and I don't remember what she said, but she spoke to me. It felt like a huge breakthrough, because she didn't talk to anyone Despite what you read on MN, most autism isn't high functioning, very sadly.

So yes, I'd press the button to eradicate it. It's a problem/difficulty that no one would wish on their worst enemy.

Yanbu. Friend has a adult son with autism(pda) and her life is pretty miserable a lot of the time. He has dyspraxia too and cannot do the simplest of tasks eg make a sandwich or a drink. She cannot hoover or do washing until his heads in the right place because of the noise, she can’t have people round because he freaks out. If he doesn’t get his way about something he threatens to kill himself. He goes off to do stuff and meet friends and 9/10 times freaks out over something and she has to drive in the night to collect him.
He’s incredibly difficult and I feel for her as she doesn’t have a great life.

Yanbu

Dh and 13 year old ds1 were diagnnosed with aspergers syndrome. They are both very academic and also musically gifted. They both struggle with relationships but dh manages to be independent and I think ds1 will too. My 5 year old is very different. He doesn't have an official diagnosis yet but he struggles with everything. It's hard to tell where he is academically because he usually refuses to perform during assessments. He is quite good at reciting a load of random information like times tables etc but he doesn't understand what he is saying. He struggles to sleep, often soils himself and we still use toddler reins on him if we go out.

YANBU. I have a 17 year old DS with ASD. He could be called 'high functioning' but he also has learning difficulties. I would take the LD's over the ASD any day.

He is an absolutely beautiful boy, 6ft 3 but still like a young child in a lot of respects, and sometimes I want to scream at how much he is going to miss out on in life due to his ASD. He has an NT twin brother and the difference in their lives is heartbreaking .

5yo DS has recently been diagnosed, he’s high functioning, and the number of people that question his diagnosis with comments like “well he looks normal!” is astounding. They don’t see how much he struggles with change, lack of routine, reading, writing, emotional regulation. Yes he can just about keep it together at school, but when he comes home, he’ll have meltdowns. His sleep is poor, so he has meltdowns in a morning because he’s shattered.

Ive overheard older kids call him thick because he can’t tell them what 2 plus two is. He can show you and understands the concept of addition, but not when put on the spot. So now I’m worrying about bullying as he gets older and falls behind his peers when it comes to reading, writing etc. He can’t do his spellings because he gets overwhelmed at trying to process the word, write and remember correct spelling. He can however recognise words on sight - phonics hasn’t been going well for him.

He’s intelligent and understands already that he’s different. I’ve caught him hitting his own head and telling he he hates his brain. He doesn’t have a “superpower” or special gift. He’s a funny, loving little boy and if I could take away his autism and put an end to the difficulties he has I’d do it in a heartbeat.

I have 2 autistic boys. They are differently affected and DS1 is more severe. I worry about what he will do when I'm gone as he's nowhere near ready for independence and he's 20. It's been an uphill battle to get support since he left college (due to having to continually resit GCSE maths and English despite having learning difficulties). He has a PA who takes him out now but when I think his classmates from school are at university, doing apprenticeships, going away with mates and girl/boy friends etc he has almost no life. I'll see how it goes with DS2, he is better socially and academically but much younger. I'd make them NT in a heartbeat if I could, it's heartbreaking to see my beautiful boys struggling.

I wonder whether anyone would ever say to a parent of a physically disabled child that it's not okay to wish they were not physically disabled?

My dd counts as physically disabled. She was born missing her hand. She has had so many opportunities through this. She's been on TV, the radio, toured with performances, met celebrities, trained with Olympic standard sports' coaches... the list goes on.
She's had far more opportunities than her siblings who have both their hands.

Do I wish she had been born with both hands? Yes I do.
Is she limited in what she does currently? Actually not as much as you would think. The biggest issue is often how people perceive her, or make assumptions about what she can do. She would also say the stares and questions whenever she meets anyone new.

I think this here is the equivalent of someone whose child is missing the ends of their little fingers. And them saying it's actually a good thing because they get access to all that I mentioned above but missing the end of the little finger doesn't have the negative effects I mentioned above.
The problem is if you get a vocal minority saying it, then it can become harder to stick your head up and say that actually you are struggling, and need help.
When you're looking after a child, disabled or otherwise, it's very easy to feel that everyone else is coping except you. Everyone else is thinking it's a superpower, but you are struggling with it. Then it becomes an admission of failure to admit you need help, when actually there's probably others who are feeling the same way but unwilling to be the first to admit it's a problem.