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.

[Equimum]

I completely agree OP, and not just for those who have the most ‘obvious’ struggle. I was diagnosed as an adult. I have postgraduate degrees, I’m married, I have children, but it can still be really problematic for me, even though I think I understand it quite well.

[pointythings]

This shouldn't be controversial at all. DD2 is on the milder end of the spectrum, copes well at school and is strong academically, has a great group of friends, on the surface has everything going for her - but all those things cover up how hard she has to work to keep it together. She has sensory issues, really has to work at social cues and interactions and struggles with changes to routine. If I could wave a magic wand and take it away, I would. Though it has to be said that if it were a one use magic wand, I'd choose to remove the fibro rather than the autism.

[EmeraldShamrock]

Yes of course Autism is a bad thing, on a large spectrum.
My friend at the school has a child he is non verbal in nappies he is 5 in a disability buggy. I cringe at some of things people say at the school to her, almost like it is a common cold that fits all.

[HumphreyCobblers]

I’ve had highly educated, eloquent autistic people attack me for being low about having severely impacted children and wanting to “change who they are”

I am so sorry to read this, how awful. I have been criticised for using ABA by similar people. ABA has enabled my son to speak! He can now tell me himself if he thinks it was cruel (It wasn't, it was brilliant). I can't believe the arrogance of someone who can speak telling me that my son should never have been allowed to learn.

[june2007]

I have worked with adults and children with Autism alongside other probs and for them it really does complicaet theres and there carers lives.

[Someonesayroadtrip]

I have two children with autism. They say when you have met one person with autism then you have met one person with autism, certainly true in my case.

I have one who is "high functioning" and another who is much more "severe". Both are verbal and in mainstream. They have other co-morbid too like ADHD, ODD, ticks, speech and language issues etc.

I would take it away in a heart beat, my "higher functioning" child struggles the most, he finds everything difficult, he's quite angry and just struggles with so many aspects of life. Little changes really upset him. Christmas is a nightmare.

My more "severe" child is such a happy little boy, it's so sad in many ways because he's so content by himself. He sits under a table and plays with bits of Lego, or Blu tac or his sheep. He's obsessed with sheep. But he's happy, he doesn't interact with children really at all. But he is very popular with adults, at school they all treat him amazingly and people buy him sheep related items all the time. It's really sweet. But what the future will be I don't know. He so nearly 8 and while a lot of his behaviours are endearing now, they won't be in a few years.

Autism is really in trend right now, it's popular for everyone and their dog to have it. People who are a bit quirky get labelled or label themselves autistic without any diagnosis. I mean I do it to an extent, my husband very much meets the criteria although is fully functioning and successful, but there is a massive difference between him and my boys with Autism.

The point is autism does out limits in people. Not always, but often. It's ignorant to think it can be overcome, it's a neuro developmental disorder!

[Andsoltbegins]

This reminds me of my dm who has a relative with autism and severe learning difficulties so doesn’t believe that my dd could possibly be autistic and makes me feel like she’s calling me a liar because she thinks ALL people with autism are like her relative 🙄

[MillicentMartha]

My DS2 is 20. He is fairly high functioning but still very limited by his autism. He’s at college doing an HND. He loves quizzes and is very good at them. He has absolutely no friends. He is utterly dependent on me for his happiness. He is mostly happy but it’s such a responsibility. My marriage broke down, my exH sees him once a fortnight overnight. I worry about when he finishes college. Will he ever get a job, will he ever qualify for UC? How will he manage once I’m gone?

I love him very much but my life revolves around his needs.

[vikkimoog]

Right, massive apologies in advance if I have this completely wrong, and I'm not trying to cause offence in anyway.
Has autism become an umbrella term for intellectual disability?
Many years ago it seemed to be a very specific disorder, but I am seeing more and more people that would have previously been diagnosed as intellectually disabled, or globally delayed as being autistic?

[ibanez0815]

Has autism become an umbrella term for intellectual disability?

no, it has not. But autism is a huge spectrum and an pretty high proportion of those on the autistic spectrum, have learning difficulties too.

Autism became such a wide ranging term that I think it is becoming almost meaningless because it can mean so many things as at the same time. And I thing getting rid of Asperger's wasn't helpful.

[Venger]

Both my sons are autistic and are totally different to one another but I wouldn't say one is more autistic than the other as they both have the classic uneven profile of abilities used in DSM-V. They have strengths in a few cognitive abilities that hide the severe difficulties they have in others and, unfortunately, those strengths mean they that it's not always recognised when they are struggling or how vulnerable they actually are.

[vikkimoog]

And I thing getting rid of Asperger's wasn't helpful
so Aspergers isn't a known disorder anymore?

[IamWaggingBrenda]

No I wouldn’t say it’s a bad thing, but I do realize that it presents the family with a lot of challenges. Having said that, there are many families/parents whose children have mental or physical issues that are equally challenging to cope with. But I certainly wouldn’t take the parent of a child with autism to task for say it’s a bad thing.

[ibanez0815]

so Aspergers isn't a known disorder anymore?

no it's not officially diagnosed. It is now all diagnosed as autism. Changed a couple of years ago only so fairly recent.

[verytiredandstressed]

I also have a non verbal autistic child . It's hard work , we can't leave him alone even now he's in his teens so it's difficult to explain to others who don't know him especially say at work if I need time off with him childcare arrangements have changed . He will never leave home or get a job so it's wrong to say it's not a bad thing but saying that as long as he's happy and cared for then all Is ok.
I usually find it easier to explain I have a son who has special needs rather than say autism as most people have misconceptions of what autism is .

[ThumbWitchesAbroad]

YANBU.
Some people still don't realise that autism is a huge spectrum, despite it being a spectrum disorder.
I have a friend whose now-adult DS is severely autistic, not very verbal, and doesn't sleep well so needs round the clock supervision and care. He has also now got epilepsy.

He hasn't got limitless options. He can't live alone. He'll never have a job. She fears for him every single day.

She does not celebrate autism, and I doubt very much that he does either.

[NorthBich]

YANBU. My friends son is autistic and will beat himself black and blue when he has a meltdown. My friend is absolutely terrified of him, the things he could do to others and what will happen to him when she is no longer around. His temper is insane and he is only getting bigger and stronger. He does not speak but does use voice technology to tell his mum what he needs. He is fed solely purée or liquid food. He will never, ever have a 'normal' life. He will never marry or have children. His life will consist of being isolated and alone in his own scary little world and the only people around him will be family or carers. The people that say things like this don't see the bad side of autism. Yes, I do agree lots and lots of people on the spectrum can go on to learn how to behave socially and do go on to lead their own independent lives but not all. So in my friend and her sons situation, autism is a bad thing. She wishes every single day that he could just lead a normal life and not be a danger to himself or others. She would love for him to be able to form loving and trusting, long lasting relationships and have children but it just is never going to happen. She loves her son so much, and she would do anything to make sure he is happy but there is nothing she can possibly do to help him. I have had to wipe her tears and let her scream and shout at me about how unfair it all is many many times. I feel awful for her as her life revolves solely around him, and what she needs to do to keep him safe. It is affecting her mental and physical health and even her own life has been dramatically changed because of this. She also cannot just get into relationships, she can't go out and relax, she doesn't want any more children (understandably). Her sons autism has made her own and her sons life extremely hard. I dread to think what she would do if she came across someone with the views your colleague has.

[Someonesayroadtrip]

@vikkimoog no, autism is autism, however is is usually categorised with other issues. It's
Rarely alone from what I have observed, my more recently diagnosed child they put it together so his diagnosis letter says something like, ASD, severe autism, with no learning difficulties, with speech and language impairment and co mobid Attention deficit disorder, severe type, occupational defiance disorder, moderate, and persistent verbal ticks.

I'm not really sure why he doesn't have it classed as learning disabilities because he is very behind but I think it is because while he is almost 8 and functions around a 4/5 year old, it's not so far off the spectrum that is categorised as such.

Autism is a list of symptoms that need to be displayed for a diagnosis, but how they affect people can be very vast.

[WhoCaresWins01]

My 12 year old was diagnosed with autism at 3. He is now 12, attends a special school and has just come out of nappies, he no longer smears his shit everywhere. He will never be independent........ Yes of course it's fine to say autism isn't a good thing!!!!

[flamingjune123]

Someonesayroadtrip
You make so much sense
I know many many people, socially and through my work within social care. I've met a few people socially with ASD in the past 40 working years but only a few. I have looked after children and people with moderately severe autism. If you believe what I see on here, it's at least daily that someone is writing fluently and with feeling and then adds ' I've got ASD'. Who are all these people and where are they in the real world cos I certainly don't see them. And do these same people go to a GP in adulthood and state that they think they have ASD? And if so why? There have always been quirky people, my Grandson is one, it may or may not be ASD but who really cares? However Autism for those who suffer and who care for the sufferers is bloody awful

[JustDanceAddict]

Of course it can be. I don’t have DC w autism but I know and know of people with autistic children. They run the gamut from presenting almost neurotypically (masking or just not having any learning disabilities) to being incontinent and non-verbal. That’s why it’s a spectrum.
Also, some autistic people who don’t have learning disabilities or who are more cognitively able find life tougher as they want to fit in, but they don’t know how.
I should imagine that the ‘burden’ for want of a better word is harder on the parents of a low functioning autistic child (as the child may not know they are autistic as don’t have the cognition), and harder on the child themselves if more cognitively able as they understand they are different.
I have read articles from parents who get upset at the ‘autism is a super power’ thing - fine if you’re Greta (and all kudos to her) but not if you have the learning disabilities that can be attached.

[Someonesayroadtrip]

@flamingjune123 - I think some people need that diagnosis to explain why they feel the way they do.

Plus diagnosis is important for children with regards what options they have in support, i.e. what school they attend.

But I hear a lot of people say they have ASD or their child does and when I start asking them questions the have never had a formal diagnosis. Granted it takes years so I get why some do, but with the likes of my husband, he is quirky but there would be no reason for him to seek diagnosis.

[RuffleCrow]

It's nothing to do with intellectual disability @vickimoog although plenty of autistic people also have a learning disability.

[PhilSwagielka]

YANBU. I'm autistic, though as a child I was diagnosed with Aspergers, and it's not made my life very easy. And there's only so much society can do. And I'm one of the lucky ones - I can talk, I can do basic self-care, I've held down jobs (though I did have trouble at work in my last two jobs) and got a degree and don't require round-the-clock care. I still think it sucks, and it's even more hard on parents with kids who are severely autistic.

[Cornettoninja]

And I think getting rid of Asperger's wasn't helpful

I was thinking that reading through this thread and agree whole heartedly. Aspergers was widely recognised as high functioning but having difficulties which is a world away from severely autistic. It has a clear meaning.

I would go further and say that the whole spectrum could do with clearer categories. I expect to make myself unpopular with this opinion but I have seen people (unintentionally) limit their children’s capabilities because they apply all autistic traits to their child’s needs without trying another way when in their individual cases it just isn’t necessary. I appreciate that it’s sensitive but I also feel quite passionately that some people just need a slightly different approach in some areas rather than writing off as can’t/won’t.

Of course then we are back to the spectrum but i really think putting such a widely varying syndrome under one umbrella is quite damaging.