Page 5 | AIBU to not like the term 'on the spectrum' to mean autistic/has autism

UndertheCedartree · 2023-05-03T15:20:18+00:00

It really bugs me! Lots of conditions have spectrums so you could be talking about anything. It's so imprecise. Also, I think it perpetuates the myth that there is one spectrum and everyone is on it somewhere so everyone is autistic to a greater or lesser extent.

Qbish · 03/05/2023 20:54

UndertheCedartree · 03/05/2023 20:38

We'll, it's just saying 'the spectrum' so people take it as universal.

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No, if it was universal you wouldn't need to mention "the spectrum".

Nobody says "it's because he's human".

Original poster

UndertheCedartree · 03/05/2023 20:55

Cuckoosheep · 03/05/2023 20:06

I don't like on the spectrum either, I do think people use it as a euphemism because autism is too difficult for them to say.

I'm going to against most posters with this so I'll turn notifications off on my phone for a while. I do describe my son as having autism. I won't say autistic as I want people to know he is so much more than his diagnosis. He is severe (again I know that isn't a pc term but I also deteste having no language to adequately describe his needs because other people feel their diagnosis is is in someway invalidated). I would cure/ remove his autism from him in a heartbeat. It isn't even a decision. Just before the usual replies, no he does not have a learning disability and he is disabled by the profound way his autism impacts him (all day, every day, not fluctuating). I know autism was compared to cancer earlier in the thread and the poster shot down but I also see the comparison and see it as worse (my dad died of cancer so yes I've seen first hand what it does and how horrible it is). Autism has taken his life, he'll never have children, get married, have a career, go on a proper night out, make decisions for himself etc. My dad got to live his life fully even though he died much earlier than he should, at least he truly lived his life. So yes, for some autism is something that they see as needing a cure or removing.

The spectrum and the theory of fluctuating needs irritates me too as it just isn't applicable to him.

I complete respect your right to use the terminology that feels right for you and your son. I guess the thing is as much as you would like his autism curing like cancer, it isn't an illness so can't be cured. But acknowledge you feel you would like it to be cured.

I think the problem with 'high functioning' etc is it is too simplistic. But I totally get that there should be language that you can use to describe your son's condition. I believe we should be listening to voices like yours as carers of people who can't advocate for themselves, as well as from autistic people who can speak up for themselves. Thanks for sharing your view.

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greetingshunda · 03/05/2023 20:55

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HadalyEve · 03/05/2023 20:57

happyumwelt · 03/05/2023 20:49

I agree - there is good primary source evidence for all three of those in particular. Why does it bug you out of interest? Do you dislike the idea that autistic people have significantly contributed to progress?

My favourite anecdote about Darwin was that he had a mirror in his study angled so he could see who was at the door and avoid them if he chose to. We know how strange the NT of mumsnet find that sort of thing.

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The comment saying it’s impossible to assess whether a genius in history was autistic is what bothered me because I was the one who posted it as an example of how autism isn’t all struggles and disabilities, it can also mean strengths and significant contributions to humanity.

That is one of my favourites about Darwin too. Einstein had 8 sets of the exact same outfit made by the exact same tailor- that is a favourite too.

OneFrenchEgg · 03/05/2023 20:58

Do you dislike the idea that autistic people have significantly contributed to progress?

What a bizarre and stupid question.

HadalyEve · 03/05/2023 20:58

By posted it, I mean I posted those exact names as examples of people that have been assessed by experts as highly likely to have been autistic.

Original poster

UndertheCedartree · 03/05/2023 20:58

PomPomChatton · 03/05/2023 20:24

Thank you! I think I got confused with this and then just made the rest up. ADOS does indeed have scores with various subcategories within it.

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Ah, brilliant, someone knew! I don't remember scores from when my son was diagnosed, but then I spend half my time confused anyway!

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greetingshunda · 03/05/2023 20:58

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Qbish · 03/05/2023 20:59

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Asperger's is no longer a diagnosis. You would be said to have ASD.

greetingshunda · 03/05/2023 21:00

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Original poster

UndertheCedartree · 03/05/2023 21:11

napody · 03/05/2023 20:24

I don't understand why so many people have voted YABU- there doesnt seem any justifcation on the thread other than a couple of people saying 'it doesnt bother me'. Loads of explanations of why it doesn't work as a term.

I know!

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LaMaG · 03/05/2023 21:13

greetingshunda I'm so sorry to hear about your son. It seems madness alright that what he is afflicted with is the same as what my sons have, both A students with a lot of quirks. Don't get me wrong we have our struggles but not even on the same scale as what you describe. I sometimes use the phrase "high functioning" although I have been told this isn't always liked but i think it's important to distinguish.

Original poster

UndertheCedartree · 03/05/2023 21:13

Mydcchangedmyusername · 03/05/2023 20:30

I've always known "on the spectrum" as saying someone is ND but can't say what it is or when someone thinks a person could be autistic but isn't sure due to being undiagnosed, they say the person is (likely to be) on the spectrum. Meaning if assessed, they'd be found to either be autistic or another form of ND.

It's just that autism has become the more widely known form of neurodiversity or neurodivergence so people often use autism as shorthand.

That's interesting, I've never heard it used in that way.

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xyxygy · 03/05/2023 21:13

LaMaG · 03/05/2023 20:32

When Ds1 was diagnosed I was told very strongly that it must be person before disability or need ie, "x has autism", it isn't WHO he is. This was also emphasised in my training for early years work. I have always been so careful with language yet recently at a parent training for DS2 diagnosis I was told the opposite ie X is autistic. I raised my hand and said I had always been told otherwise and the reply was "well its changed now. We don't separate the person from the disability etc". It seems ludicrous to me that "it" can change, it might change again at any moment! So I've given up trying to not offend, I work with some children with autism and ask the parents what they prefer.

The reason for it changing away from person-first language is that all those autistic kids grew into autistic adults, and could have their own agency and opinions that couldn't just be dismissed with "we know what's best for them" - and people began to actually ask them what they preferred.

And, of course, there was the tandem development that the medical community began to let go of the autistic stereotypes, to slowly realise that autism isn't only a disability.

Have you ever asked the children you work with what they prefer, rather than the parents?

OneFrenchEgg · 03/05/2023 21:15

I don't like 'on the spectrum' because I only ever hear it said about someone whose behaviours or personality is being criticised. Like a reference to someone's colleague who annoys them followed by 'but bless him I think he's a bit on the spectrum.'

greetingshunda · 03/05/2023 21:15

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Original poster

UndertheCedartree · 03/05/2023 21:17

happyumwelt · 03/05/2023 20:37

Reading this has made me realise that there isn't an equivalent choice for those of us with ADHD (unless someone can tell me otherwise) - you just have to say 'I have ADHD'. I'd like to be able to describe it as part of who I am in the same manner as saying someone is autistic, rather than 'has autism'.

I have a feeling there is a word people sometimes use...but could be wrong.

I think ADHD isn't as recognised as a neurodiversity as autism as yet so the reason there isn't a mainstream word.

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doadeer · 03/05/2023 21:17

I think people think it's softer... That saying someone is autistic is somehow more blunt.

My son is autistic and I think people feel they need to lessen it by saying on the spectrum.

Also the idea the spectrum is a linear line from "not very autistic" to "very autistic" is a prevailing belief many have.

Just like "we are all a bit on the spectrum." Nope!

LaMaG · 03/05/2023 21:18

xyxygy · 03/05/2023 21:13

The reason for it changing away from person-first language is that all those autistic kids grew into autistic adults, and could have their own agency and opinions that couldn't just be dismissed with "we know what's best for them" - and people began to actually ask them what they preferred.

And, of course, there was the tandem development that the medical community began to let go of the autistic stereotypes, to slowly realise that autism isn't only a disability.

Have you ever asked the children you work with what they prefer, rather than the parents?

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Thanks for clarifying. I work with pre schoolers so they are very young, only a few have been diagnosed over the years it's often been more a case of talking about the possibility of a diagnosis while on waiting lists. I agree though the child should be talked to - my DS2 likes to say he has autism so that's what we say. DS1 is in total denial but that's another story.

LaMaG · 03/05/2023 21:20

I got a slap on the wrist once for using the phrase "suffers from autism" so thats another one to avoid!

xyxygy · 03/05/2023 21:20

LaMaG · 03/05/2023 21:18

Thanks for clarifying. I work with pre schoolers so they are very young, only a few have been diagnosed over the years it's often been more a case of talking about the possibility of a diagnosis while on waiting lists. I agree though the child should be talked to - my DS2 likes to say he has autism so that's what we say. DS1 is in total denial but that's another story.

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Ah, fair enough. On reading that back, it does look as though I was being pointed with my question - wasn't intended that way. Communication problems...kinda goes with the territory sometimes :D

doadeer · 03/05/2023 21:22

RaraRachael · 03/05/2023 17:31

I don't like the phrase when applied to myself but I also don't like 'has autism' - I'm autistic.

We were categorically told not to refer to pupils as autistic but that they had autism. Same with dyslexia - not allowed to say they're dyslexic - they show dyslexic-type tendencies.

Was this recently?

I know in the 90s my mum was told to use person first language not identity first but to my knowledge we've been using identity first for quite some years now!

Original poster

UndertheCedartree · 03/05/2023 21:26

Whatapickle07 · 03/05/2023 20:45

No i think its done wonders for people to fibally be recognised as ASD. It used to be very narrow and specific and many children and adults webt undiagnosed because they didnt tick the autistic box.

Now so many more traits are accpeted and recognised. Especially for girls. My son is ASD does not line things up, likes the cinema and fireworks, clothes and tags dont bother him.

Without this "spectrum" he wouldnt tick the sensory box

I'm just saying I don't like the term 'on the spectrum' to describe autism. It feels dismissive and people often then go on to say everyone is on this spectrum. @

I'm not disputing that Autism is a spectrum disorder/condition.

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QuitChewingMyPlectrum · 03/05/2023 21:27

TallulahBetty · 03/05/2023 16:31

Just shows we are all different - I LOATHE the term 'is autistic' as you wouldn't say 'she is cancerous' - you would say she HAS cancer. I don't see why autism is any different, but there we go. Horses for courses

IMO they're entirely different as cancer is a disease, while autism is a neurotype.
I don't carry my autism around like a bag, it's part of me - I'm autistic.

But I have no opinion on what others choose to use.

Original poster

UndertheCedartree · 03/05/2023 21:28

happyumwelt · 03/05/2023 20:49

I agree - there is good primary source evidence for all three of those in particular. Why does it bug you out of interest? Do you dislike the idea that autistic people have significantly contributed to progress?

My favourite anecdote about Darwin was that he had a mirror in his study angled so he could see who was at the door and avoid them if he chose to. We know how strange the NT of mumsnet find that sort of thing.

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Genius!

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