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.

@flamingjune123 ... that's up to your friends.

For my friend it answered lots of questions about why he was who he was, he understood himself so much more, and released that despite a child hood of being told he was weird, he actually wasn't. He was diagnosed a few yrs ago, so it's all very new for him.

You are dismissing it, you just did it again...you obviously don't believe others when they say they have ASD, which is ironic as you seem to SO sure your friends are autistic, yet they are not diagnosed...

Differentname
My friends believe they have ASD, I agree with them. However there's no need for them to have a formal diagnosis made. Not everything needs a diagnosis. Some people are accepting of differences in themselves without needing to label

flaming Ds was not diagnosed by a psychiatrist he was diagnosed by a consultant community paediatrician. At his intial appointment she said she was pursuing a diagnosis because of the significant impact his difficulties were having on his life. An NHS diagnosis is not an easy route at all. Ds was referred 15 months ago and was finally diagnosed 3 weeks ago. We are still waiting for the letter to confirm diagnosis to be sent to his school. I'm not sure any parent wouid go down this route unless is was absolutely necessary.

We don't see it as a label either.

Some people are accepting of differences in themselves without needing to label
Labels are for jam jars, not medical diagnoses.
Very dismissive way to talk about people who seek diagnoses for their disabilities.

@flamingjune123 Both sets of parents are not seeking formal diagnoses. They see no need

That is why adults today are seeking a diagnosis. Because their parents "didn't feel the need" or dismissed their struggles. How about thinking about the child for once, and the adult that child will become. Would they like to know why they do what they do? You can bet that the answer will ALWAYS be yes!!

It is shortsighted not to get a child a formal diagnosis, and selfish too. They may not always "cope"! My dd "coped" for 8yrs until the wheels fell of in spectacular fashion. Since then, she has barely coped at all. her dx helps us understand why, and help us as her parents to parent her in a way that helps her, not hinders her.

It [ADHD] was the buzz diagnosis ... I honestly believe the same thing is happening atm with ASD Wow.. you are so very ignorant.

Either psychiatrists got it totally wrong when diagnosing 20 years ago or they're getting it totally wrong now They got it wrong years ago, calling it childhood psychosis and childhood schizophrenia. I used to go to work with my mum when I was a teen, she worked in a disability residential unit. I now know that several of the girls/ladies (late teens - on) she looked after were on the lower end of the spectrum. I also went to school with at least 2 (in my class) kids who would now be dx as being on the spectrum. It isn't a bloody "buzz" diagnosis. Perhaps if your family decided to do right by their children, and seek a diagnosis, you would see how many hoops you have to jump through in order to get your concerns confirmed.

without needing to label diagnosis, please, Not label.

Maybe we shouldn't label people with cancer diagnoses.

flamingjune, like you I am old enough to remember when ADHD was diagnosed lots. I wonder though if those ADHD cases would be recognised as autism today. There’s lots of overlaps.

My niece is 30 and was diagnosed with ADHD at the age of 8, at the age of 30 it’s pretty clear to me that her true diagnosis is autism. She copes in life by masking her feelings and avoiding people except in her role as a teacher. She finds change extremely hard and is now pursuing a diagnosis as an adult because she says she needs to understand why she has these issues.

Many children like my son have a diagnosis of both ASD and ADHD. He’s worthy of diagnosis as he struggles massively and his return to mainstream for college has just broken down spectacularly. So your nephews may be autistic or they may just be eccentric. Fact is if they are autistic it’s likely to be obvious to everyone in contact with them and would be debilitating for their parents. My guess is they are NOT in fact autistic but quirky and individual. Nothing wrong with that but they shouldn’t be used by you as a benchmark to judge other people whose children have very real and distressing challenges.

Ok that's told me!
So the general consensus is that psychiatrists got it wrong 20 years ago when making multiple diagnoses of ADHD
It will be interesting to look at this thread in 20 years time

I think diagnostic criteria has changed rather than psychiatrists getting it wrong twenty years ago.

In fact children tend to be diagnosed by paediatricians and not psychiatrists so not sure where you are in the world.

My son was diagnosed 10 years ago by a developmental paediatrician who specialised in ASD.

He was diagnosed with ADHD about six months later....again by a developmental paediatrician.

As an adult I was diagnosed by a psychiatrist with ASD and also ADHD. It was no surprise as DS is a carbon copy of me as a child with the exception of learning ability. I read phenomenally early, DS was still struggling at age 8 until he commenced on medication for ADHD. In three months he could read fluently....the medication just giving him enough focus to finally master it all.

@Booboostwo, fwiw yes I was talking about the people with ASD I have met. That includes my husband and one of my dcs. My FIL too (even thugh he isnt diagnosed) and the children of a couple of friends (one is in a SS, the other in Mainstream but his mum wonders if he will really be able to be fully independent). Thats the people very close to me. And then you have other people more removed or the ones on this thread who report their struggles.

Does it mean I will only see people with ASD as people 'who dont cope'? wtf? I see people for who they are, not according to their neurodiversity/gender/sexuality/race or whatever. I dont judge people or put them into boxes because they have x diagnosis. But I am also careful enough to know it is POSSIBLE that they will find some sides of their 'difference' difficult to live with. Anxiety is on them. You can 'cope' with anxiety. It doesnt mean its not hard or doesnt affect your own wellbeing. and many people on the spectrum are suffering with anxiety.

Maybe its all coming from the word' coping' and how 'not coping' is usually seen as such a negative thing. And that isnt the word I should have used. Maybe struggling woud have been better. Who knows.

@flamingjune123, with ASD I uspect it has more to do with a better awareness and the fact we have finally realised women/girls dont present the same way than men/boys.
I also think there is plainly an increase in cases (why is to be explained)

But saying its just a 'trend/fashion' and it will just die down, which implies many of the people diagnosed now actually arent on the spectrum, is hurtful imo.

So... as an adult dx'd with ASD and ADHD diagnosis and a DD with the same, seeing this and the poll results:
i.gyazo.com/262555dddb287ad95c9951a474c7e073.png

it broke my heart.

I realised that - just like many other places where I get constant low-level negativity for not being entirely "normal" - there's no place for me here, either.

Having autism is a neverending, exhausting ordeal. Things don't work the way they should, people never say what they actually mean and you participate in conversations knowing that there's a whole swathe of non-verbal communication happening that just isn't for you.

Yes, it's incredibly tough, but you might want to seriously consider how calling autism bad comes across when it's an immutable characteristic and none of us have the ability to "get over" it.

My autism has made my life difficult. Yet I can't separate the aspects of my thought processes that are due to my ADHD and my ASD from what is intrinsically "me". I consider - like many autistic people - the autism to be an innate part of my personality.

Which is, according to 99% of people on this thread, bad

Honestly, after this and the whole support for aspergers thread in the relationship section, I'm starting to realise that I can't defend myself without pricking a neurotypical's privilege and the concomitant distress at being reminded that it's just so difficult when a person with learning disorders impacts their otherwise normal and happy life.

I'm not going to apologise for something I was born with and I can tell you that having my mother of all people saying that part of me is bad and hard work and, in an ideal world, I'd be a different person - well, that'd hurt.

And to all the NT's: Gosh I wish I had the same luck as you guys to be born not-bad. Congratulations on your fully functioning brains and the palpable condescension to those of us who have to work hard every day to meet a load of arbitrary and unwritten social rules.

To anyone that's been left feeling inadequate by this thread, it might be worth looking at other forums where the majority of the community don't treat you with pity, or like an aberration that'd be fixed in an ideal world. community.autism.org.uk/

My friends believe they have ASD, I agree with them. However there's no need for them to have a formal diagnosis made.

If there's no need for them to have a formal diagnosis then they don't have autism. The need for diagnosis is part of the diagnosis. They may well have autistic traits but to actually be autistic their traits need to 'impair their life in a clinically significant way'.

Also adults have usually developed coping mechanisms. There are tonnes of dyslexic adults, but you don't find them moaning on MN either, because they've found ways to cope. The same may well true of ADHD.

HeyNotInMyName I am sorry if I misunderstood you, but you are doing it again. I don't 'cope', I cope. And no I don't find it hard and no it doesn't affect my wellbeing. I really do not understand why you keep making claims about how I feel. I don't doubt that people with ASD feel overwhelming amounts of stress and anxiety...so do some NTs - I just don't make claims on behalf of either.

I wonder though if those ADHD cases would be recognised as autism today. There’s lots of overlaps.

There's a growing body of research that suggests ADHD is part of the autistic spectrum. Likewise eating disorders.

This thread is disableist and I have reported it.

Imagine if the word 'autism' was replaced by black, amputee, irish, traveller, down's syndrome etc. There'd be hell on.

I am autistic as are my two sons. We are not second class citizens. We are as entitled to live in society as anybody else. We are human beings regardless of functioning level.

You people disgust me.

finitemonkeys AMEN! And the fucking awful support for people married with Aspies thread in the relationship board.

@finitemonkeys I hear you.

Its like you cant even be positive about yourself and your own children without having to make concessions about how AWFUL it is for parents and partners of other autistic people.

With social media, we have a growing community of people who can talk and have collectively agreed on some things and not others, but the neurodiverse positive movement helps us remember our value and that we are valid and that there are actually some things that in the right circumstances, can be a bloody superpower (Thankyou Greta)
There might be very good reasons why we dont always bow down and tell autism parents that everything is shit and their kids dont have a hope in hell.

And again some autistics and parents of children with autism being shouted down again.