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.

Just because you consider it a disability, it's not clinically defined as such and many of us don't experience it like that.

Sorry but it is clinically defined as a disability. Diagnosis requires a clinically significant deficit (DSM 5) or a clinically significant impairment (ICD 10). If you're not disabled by it, you don't meet the criteria for diagnosis.

Sorry I pressed YABU by accident.

@x2boys
No.parent on here was talking about PottedShrimp,experience though Finite they are talking about their own ,my child is non verbal ,he's in nappies he will never live independently , I can't see the positives in this ,even some posters on here with a diagnosis of autism say they hate their diagnosis are they wrong too ,the fact is in less you walk a mile in my shoes you have no right to tell me i shouldn't wish thing,s were different.

No, I don't. But I do wish you'd actually read what I said instead of creating a straw man out of my argument and arguing against that.

I can't begin to express how sorry I am that your son is having to deal with a disability of that severity - not being able to talk and incontinence is beyond 99% of ASD diagnoses and becomes a much more nuanced, complex and difficult thing to deal with. I can't even imagine how tough it is to care for him on a daily basis whilst wishing the best for him and knowing that he's going to have a tough life ahead and will likely require care for the rest of his life.

Just because we don't agree on which words to use, I don't want to deny your pain and your suffering. Of course you can wish that life would be different.

But it's worth being aware that non-verbal does not always equal non-comprehension and while you obviously - and very reasonably - wish life was better for your son, is it not worth looking at the words we use to make sure that we don't make life harder for those who are dealing with this by making them think they're bad or a burden on society?

I haven't had half the challenges you and your son face and you must have incredible strength to cope for both of you. I don't want to make anything harder or distress you further - I just want to raise the possibility that there's a better way to address it without using the word "bad". I'm sorry if you felt I was dismissing the struggles you're facing.

ImNotYourGranny saying that a person with ASD who is not significantly affected by it is not disabled is fine. Saying that a person with ASD who is not significantly affected by it does not have ASD is offensive. It is not up to you to tell people with ASD how they should feel about, essentially, themselves.

I'm stating what the diagnosis criteria are. That's a matter of fact. So it's only offensive if facts are offensive.

If you are not impaired then you don't have autism. That's a fact.

If you don't feel you're impaired, that's opinion and is different. It means you don't see what clinicians see. I put myself into this category a lot of the time. For example, I believe I'm very well mannered and polite. Other people think I'm rude and aggressive. My consultant says that my life is significantly impaired by this as I don't have any friends. I don't feel that my life is impaired by this as I don't want any friends.

If I get what @ImNotYourGranny wanted to say, the idea is that the diagnosis in itself means that the person HAS TO be affected by some impairements and therefore HAS TO be disabled.
Its not a judgement on the person or how they feel. But a statement on how the diagnosis is defined iyswim.

Now the argument can be that its an NT peron who evaluate that impairement as a disability because they see it from that pov.
Maybe the issue is yet again one of vocabulary.

HeyNotInMyName put it better. I'm not always so good at communicating on account of having a communication disability.

My consultant says that my life is significantly impaired by this as I don't have any friends. I don't feel that my life is impaired by this as I don't want any friends.

Now that reminds me of ds! I see him wo any friends and feel for him. He seems absolutely not bothered by it and generally prefers his own company (and says his dream is to live in the middle of nowhere with no one around!)

Don't you see how this way of understanding ASD is offensive? It presupposes that you must experience the difference as an impairment or a deficit, otherwise you don't qualify. If you actually don't mind being ASD or even, god forbid, like yourself as you are, then it can't possibly be ASD.

It is a diagnosis from an NT perspective that has to turn ASD into a deficit or an impairement.

Once again, I do not doubt that, for some people ASD is a deficit, impairment and disability - I just don't think this can apply to everyone regardless of how the person perceives themselves.

And even if someone does have clinically defined impairments, if they don't have enough that fall under the banner of ASD, they won't get a diagnosis of ASD.

One of my friends here has 4 DC with varying levels of ND. Her DC2 fits all the criteria for PDA, but because that generally isn't diagnosed in Australia, as it's not a separate category in the DSM (fuckingthing) then she has NO diagnosis, as she doesn't fit enough of the criteria for ASD. This is despite PDA being under the banner of ASD - but she hasn't ENOUGH ASD-style impairment to qualify, so has nothing.

She still has significant "impairment" - anxiety, social communication issues among others - but can't get a diagnosis.

So if someone HAS got a diagnosis, they have had to fit enough of the DSM criteria to achieve that - whether they personally find the diagnostic criteria impairs their life or not.

My consultant says that my life is significantly impaired by this as I don't have any friends. I don't feel that my life is impaired by this as I don't want any friends.

Now that reminds me of ds! I see him wo any friends and feel for him. He seems absolutely not bothered by it and generally prefers his own company (and says his dream is to live in the middle of nowhere with no one around!)

My comment was probably a bit flippant. The truth is that as a child I did want friends but I had no idea how to go about it, so I played on my own. I was very lonely. Every attempt to connect with others was rejected. Sometimes I did make a friend but then I couldn't cope because I didn't know what to do with this friendship and I'd end up messing up and getting dumped. This pattern continued into adulthood. I'd try to make friends but it never lasted and I always ended up hurt and frightened because I didn't understand what was happening.

The last time it happened was shortly before my diagnosis and it shook me up so badly that I didn't speak at all for almost 6 months as I was too scared to because I didn't know what I was saying that caused people to hate me so much. So now I don't want friends. Friends to me equals pain.

@Booboostwo, if that is offensive then it means that the way the diagnosis is made is offensive.

in that case, how do you think people with ASD can be diagnosed if not by evaluating how the way their brain function differs from the norm?
Genuine question because Im struggling to understand why one would seek a diagnosis if they were not experiencing their difference as an impairement.

@ImNotYourGranny, H has said something very similar to me before.
"Ive learnt to be on my own" in his own words.

The entire idea of what ASD is and how it affects people with ASD has been shaped, and can only be understood, in light of a NT world. Isn't there something perverse in this? NTs et the parameters that define ASD, NTs define how ASD people should feel about themselves, and, ironically, if you don't fit expectations then you are not even ASD.

HeyNotInMyName that is a good question, but look at what is happening with the diagnosis:

• there is a judgement that aspects of complex whole do not fit the norm - NT is the norm, fair enough
• then there is a judgment that this lack of fit is an impairement or deficit - now NT is the good norm, and ASD is a failure - things are getting more complicated.
• and if an ASD person doesn't perceive their impairment or deficit as a negative thing but sees it as a difference, then they are not even ASD - now we're royally screwed.

@BarbariansMum
finitemonkeys care to quantify that? What percentage of autists dont experience autism as a disability? And what of those who do? Are they allowed to agree with the OP? She only proposed that it can be a bad thing, not that it always was.

Oh, for god's sake - not sure how many times I have to repeat that my issue is with the choice of word and the implications of a person being told that an intrinsic part of them is "bad". But yeah, I'm sure you think asking me to quantify a subjective autistic experience description documented in a poll is the killer question that'll shut me up.
But no, I don't care to quantify or prove anecdotal evidence that contained no statistical claims. I know lots of autistic people, both online and irl and, over many discussions, many of us have expressed we don't feel like we're innately disabled and we're just at a huge disadvantage trying to navigate a NT society.
Stupidly, I forgot to document their names, links and/or conversations over the years. My apologies if a description of having autism, from an autistic person who's spoken to lots of other autistic people about being autistic is less valid than what you reckon is true.

Hell, you lot are barely being civil to us for speaking up for ourselves - This thread is full of NT people telling me and some others that our opinions are invalid - how often do you think people actually bother soliciting our opinions about this? I apologise if speaking about my life experience doesn't meet your criteria for an authoritative source.

@ImNotYourGranny
Sorry but it is clinically defined as a disability. Diagnosis requires a clinically significant deficit (DSM 5) or a clinically significant impairment (ICD 10). If you're not disabled by it, you don't meet the criteria for diagnosis.

You do know that DSM stands for Diagnostic and Statistical Manual of Mental Disorders, yes?

Disorder. Having autism is not the same as being disabled. Some autistic people are disabled, some autistic people are diagnosed but do not qualify for disability benefits or carers because they're not, by clinical definitions, disabled by their autism, just ground down, depressed, poorly functioning and self-loathing because of other people's reactions to their disorders.

But I appreciate that my experience of being diagnosed, counselled and treated by psychiatrists for autism means that I can't understand it as fully as an NT who wants to insist I'm disabled and should feel bad about it.

Ugh, you know what? I deal with this shit every single fucking day of my life and I regret posting a reply to a thread that made me feel terrible. To the 99% - you're all right. Autism is obviously the worst thing ever, we're clearly nothing more than burdens on society and on our poor NT parents and in an ideal world, none of us would exist and you'd have all these wonderful socially adept children that you could take pride in, instead of shame.

@MNHQ - good job with the inclusive, welcoming and diverse community that encourages each other to express their desire that autistic people didn't exist and were replaced by different, better and above all, normal children. You know, because it's better for everyone.

FFS yet again we can't have a civil discussion because the moment anyone says anything negative about autism it turns into "You're all supremacists who hate autistic people and want them to die."

Booboostwo if schools or NT people generally were geared up to deal with children like my son, then I couldn't care less if he had a diagnosis or not.

As it was, nothing was set up to help him in any way shape or form and the diagnosis was the only way to get some support, which even then was poor.

Somewhere along the line we've lost compassion for each other and we fear difference, all of which is very sad.

Where has one poster said they wish autistic people don’t exist?

Autism is obviously the worst thing ever, we're clearly nothing more than burdens on society and on our poor NT parents and in an ideal world, none of us would exist and you'd have all these wonderful socially adept children that you could take pride in, instead of shame.

That is offensive as fuck. 😠

Personally I think my autism is a double edged sword. for example, one of my autistic traits is that I can't lie. People therefore trust me as they know I'm 100% honest. But they also hate me because I'm 100% honest.

MargotLovebutter you've lost me there. I never said you shouldn't seek a diagnosis, nor that it is acceptable for people who need help and should get it, not to have it. I'm very sorry it has been a struggle to get help for your DS, it shouldn't be.

Ds is 9, not toilet trained, barely speaks, has no friends and been turned down by every special school. He always wears ear defenders and flaps and screams constantly. He’ll never go to college, get a job or a girlfriend or have a normal life. I will spend the rest of my life caring for him.
It’s heartbreaking, it’s emotionally debilitating and I grieved for the futures I thought we’d both have.

As a parent of a newly diagnosed child, this thread has left me more confused than ever.

@PralineCookie
FFS yet again we can't have a civil discussion because the moment anyone says anything negative about autism it turns into "You're all supremacists who hate autistic people and want them to die."

Civil discussion? I've repeated ad nauseum that my issue is with the choice of words and how that's going to impact the self-esteem of people with ASD.

I've had comments along the lines of "how dare you?", accusing me of calling people nazis, saying that I'm denying their experiences, just literally telling me I'm wrong, using incorrect "facts" to hammer home their point, or saying my opinion's ridiculous. It's not just one-sided. Honestly, it's a bit disingenuous to suggest that the thread jumped the shark because the "autistics got uppity and can't discuss it civilly", when most of us were trying to say that it's not healthy to call something that's an intrinsic part of a person and can't be changed, "bad".

Aargh, sucked in again. Sorry, poor bad impulse control.
I hope that the NT's appreciate you having their back - they've had a really tough time of it just lately.