Page 3 | AIBU to not like the term 'on the spectrum' to mean autistic/has autism

OrangeBlossomTime · 03/05/2023 18:36

Do you think it's possible to get a term that sits well with everyone op?

blankittyblank · 03/05/2023 18:38

Hmm interesting. I have used "on the spectrum" before when describing someone. I was used it as a sort of catch all for possibly autistic/ADHD. Some kind of neurodivergence I thought they may have. Is that not a good way to have put it? I'll stop if so!

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UndertheCedartree · 03/05/2023 18:39

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.

I think you should refer to people as they choose or if non-verbal as their carer thinks best.

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Original poster

UndertheCedartree · 03/05/2023 18:44

nakeklak · 03/05/2023 17:31

What's the difference between 'has autism' and 'is autistic'? Just curious

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For me I prefer 'is autistic' as 'has' autism sounds like an illness or something I can change.

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crazyBadger · 03/05/2023 18:46

My teen DC all neuro divergent say they have a touch of the tism......

Dd has a friend who says she has the shakey then wakey condition....

Teenagers are weird.......

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UndertheCedartree · 03/05/2023 18:47

AbsoIutelyLovely · 03/05/2023 17:34

Sorry what I meant was when he couldn’t speak eat poo sleep and was terrified of every single thing - he was without doubt completely disabled by it.

Somehow he is free of all that and if anything autism is his strength. Currently. I am always waiting for regression though and am dreading his later teenage years.

Does your son have an EHCP? Mine has one in place and is well supported in exams - he also has aspects of adhd too and is incredibly disorganised. He is 12.

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Yes, I see what you mean. Yes, my son has an EHCP. He's 16. He probably didn't show any signs of puberty til 14. Not sure if that has any link to autism, though!

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Original poster

UndertheCedartree · 03/05/2023 18:50

Tessisme · 03/05/2023 18:26

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

Whether I like the phrase 'on the spectrum' or not, the above doesn't make sense. Surely identifying someone as being on the spectrum with regard to ASD implies that there are people who are not, rather than suggesting that everyone is.

People seem to make the leap to everyone is on it. I often hear 'So and so is on the spectrum, but then we all are somewhere, aren't we?'

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Original poster

UndertheCedartree · 03/05/2023 18:52

noblesix · 03/05/2023 17:46

I'm autistic and knowing what nomenclature to use without inadvertently offending someone feels like a flippin minefield (fairy ironically I suppose)

I don't like 'on the spectrum' because it's been directed at me as an insult in the past. But I probably wouldn't mind it otherwise.

I previously was happy enough to be called an Aspie but Asperger's is no longer part of the DSM so can't be used in clinical diagnosis afaik, and apparently Hans Asperger had links to the Nazis so it's problematic for that reason too.

I sometimes say I'm autistic but that can seem wrong because it puts me in the same category as severely autistic people - which I absolutely categorically do not have a problem with except that I worry that by lumping us all together, it might make life more difficult for people who need a lot more support than I do. (Have heard this objection from parents of severely autistic children)

I did used to say neurodivergent, partly because autism isn't my only form of ND, but I've seen people accused of saying ND to avoid being associated with autism because it's a more stigmatising label.

The term ASD is not great because it categorises it as a disorder, which is not the message I want to give to my autistic child right now. (Not that it isn't a disability but 'disorder' feels like a horrible word for something that is intrinsic to who we are).

I'll probably just stick with 'weirdo' when referring to myself. It's accurate at least.

That's a good summary, actually!

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Daftasabroom · 03/05/2023 18:56

UndertheCedartree · 03/05/2023 16:20

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.

The problem is that most people don't understand what a spectrum is.

Most people seem to think of a spectrum as having just one dimension. In the context of autism this seems to be visualized as the image of the electromagnetic spectrum split from visible light. With just a left and a right hand side.

A spectrum actually has a vertical axis and an x axis.

So we all have a neurological spectrum, with a whole bunch of traits along the horizontal axis. We may all have similar traits but people with autism will have a similar pattern or abundance of specific traits.

The mass spectrum in the attached image is of a particular substance. Every substance will have a mass spectrum but the pattern of peaks will allow an expert to identify the specific substance or combination of substances. An autistic spectrum would be very similar in having a specific pattern.

Does that make sense. Spectrum is actually the correct scientific term, it's just that it's been massively misrepresented in the media, and hence public perception.

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

Original poster

UndertheCedartree · 03/05/2023 18:57

bellac11 · 03/05/2023 18:04

Generally speaking most people dont like to be defined by a disorder or disability they have

So to describe a person as 'is xxxx' implies thats all they are, so they're not a person with schizophrenia or a person with mobility difficulties, but rather 'is schizophrenic' or 'is physically disabled'

So yes, people will describe it as 'this person has autism'.

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Autism isn't the same as an illness or mental disorder. There is nothing wrong with us, you can't cure us. You should refer to people how they prefer.

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Original poster

UndertheCedartree · 03/05/2023 19:00

brawhen · 03/05/2023 18:11

I stand corrected!

Simon Baron-Cohen was doing research in to links between autism and engineers while I was there - I remember taking part in departmental surveys to ask about our own traits and our relatives' traits. I had not heard that the majority of engineering students were autistic these days.

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I suppose you wouldn't really know just by looking at your fellow students.

Did you get any feedback from the surveys?

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Original poster

UndertheCedartree · 03/05/2023 19:03

Allthecheeseplease · 03/05/2023 18:22

I have ADHD, I also have ASD. I think it halps some people to think neurodivergent issues like PDA, dyslexia, dysbraxia, ADHD and ASD as spectrums. Also ASD actually has the word spectrum in it (austism spectrum disorder) It honestly doesn't bother me when people say they are a "little on the spectrum" and a lot of people do have some some neurodivergent traits - it's good to recognise them in my opinion and if it helps them empathise with my condition all the better.

Yes but lots of conditions have spectrum in the name! So when people say 'on the spectrum' I want to ask 'which spectrum'? 😂

Thanks for your views.

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Original poster

UndertheCedartree · 03/05/2023 19:11

Fairislefandango · 03/05/2023 18:34

It is obviously your prerogative to prefer and dislike whichever terms you like, but it's clear that not all people with autism (or their families) have the same preferences. So when some of them say 'Please don't use that term - it's not the way you should refer to people with ASD' but then others say 'No, actually that's how I prefer to be referred to!' it makes it pretty difficult.

Saying 'Well why not use the individual terms each person prefers' isn't necessarily always very practical, especially if you are posting on a thread with multiple people with ASD who prefer different terminology, or if you know quite a few people with ASD.

I'm a teacher and have taught many, many students with ASD. Fortunately I rarely have to refer directly to ASD in front of them - I have no idea how each of them prefers to refer to it or themselves!

I'm a nurse so refering to people individually how they prefer is just normal to me.

But also I would never try and speak for everyone with autism/who is autistic. And I wouldn't judge someone using a term I don't like in a group as I'm aware the with/is terms are preferred by different people.

'On the spectrum' is separate to that difference, though. It just doesn't make sense to me so makes me feel uncomfortable and then it just gets annoying when you hear 'but we're always somewhere on 'the spectrum' as if it's a universal spectrum!

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GazeboLantern · 03/05/2023 19:14

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

Cancer is not a normal state. Cancer is dumping you do your best to get rid of.

Being autistic is a normal state. As normal as being tall, black, left-handed or red-headed. It neurotypical. It is something you are and you will never get rid of it so you might as well embrace it.

GazeboLantern · 03/05/2023 19:16

Bloody autocorrect.

2nd attempt:

Cancer is not a normal state. Cancer is something you do your best to get rid of.

Being autistic is a normal state. As normal as being tall, black, left-handed or red-headed. Or neurotypical. It is something you are and you will never get rid of it so you might as well embrace it.

Original poster

UndertheCedartree · 03/05/2023 19:16

OrangeBlossomTime · 03/05/2023 18:36

Do you think it's possible to get a term that sits well with everyone op?

Most people seem to be fine with 'autism', although some aren't!

The person first divide appears to be quite big as people have quite strong opinions on either side.

Not sure anyone prefers 'on the spectrum'?

So, probably not but maybe we can get closer?

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Daftasabroom · 03/05/2023 19:20

@UndertheCedartree it would be the neurological spectrum.

Disorder and condition have very specific definitions. Trying to redefine medical and scientific terminology because of poor media representation would lead to utter chaos.

E.g. Cancer is a condition not a disorder - all of this would need to be redefined.

Original poster

UndertheCedartree · 03/05/2023 19:25

blankittyblank · 03/05/2023 18:38

Hmm interesting. I have used "on the spectrum" before when describing someone. I was used it as a sort of catch all for possibly autistic/ADHD. Some kind of neurodivergence I thought they may have. Is that not a good way to have put it? I'll stop if so!

I would say, you either have autism or you don't, so you are either autistic and therefore on the autistic spectrum or you are not autistic and not on the spectrum.

I see where you are coming from, but I think I'd say 'I think so and so may be autistic or may be neuro diverse/ or I think so and so has some autistic/ADHD traits.

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Original poster

UndertheCedartree · 03/05/2023 19:26

crazyBadger · 03/05/2023 18:46

My teen DC all neuro divergent say they have a touch of the tism......

Dd has a friend who says she has the shakey then wakey condition....

Teenagers are weird.......

Teenagers are cool 😎

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blankittyblank · 03/05/2023 19:27

UndertheCedartree · 03/05/2023 19:25

I would say, you either have autism or you don't, so you are either autistic and therefore on the autistic spectrum or you are not autistic and not on the spectrum.

I see where you are coming from, but I think I'd say 'I think so and so may be autistic or may be neuro diverse/ or I think so and so has some autistic/ADHD traits.

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Thank you! I'll be more mindful next time and be specific with my words :)

Original poster

UndertheCedartree · 03/05/2023 19:35

Daftasabroom · 03/05/2023 18:56

The problem is that most people don't understand what a spectrum is.

Most people seem to think of a spectrum as having just one dimension. In the context of autism this seems to be visualized as the image of the electromagnetic spectrum split from visible light. With just a left and a right hand side.

A spectrum actually has a vertical axis and an x axis.

So we all have a neurological spectrum, with a whole bunch of traits along the horizontal axis. We may all have similar traits but people with autism will have a similar pattern or abundance of specific traits.

The mass spectrum in the attached image is of a particular substance. Every substance will have a mass spectrum but the pattern of peaks will allow an expert to identify the specific substance or combination of substances. An autistic spectrum would be very similar in having a specific pattern.

Does that make sense. Spectrum is actually the correct scientific term, it's just that it's been massively misrepresented in the media, and hence public perception.

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Yes, I know most people think a spectrum is just a line.

My point is that people think on the left is 'normal' people and on the right 'very autistic' people and then those with 'a bit of autism' in the middle.

But when we talk about 'the autistic spectrum' it's specific to autism not just a line everyone is on.

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Original poster

UndertheCedartree · 03/05/2023 19:36

blankittyblank · 03/05/2023 19:27

Thank you! I'll be more mindful next time and be specific with my words :)

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Thanks for listening ☺️ That's just my opinion!

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ChocolateTea · 03/05/2023 19:36

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

See I agree with your sentiment, but then someone with diabetes is called diabetic, so it can work both ways?

I use all of the basic terms. I’m autistic. I have Asperger’s. I have autism. The one I really dislike is neuro diverse. I never use that. And I hate people telling me how I can refer to myself! (Which is definitely the autism!)

PomPomChatton · 03/05/2023 19:38

Perhaps someone could help me understand something...

When my DDs were tested for Autism there was a certain "grading" given at the end. From zero to a certain number (which one DD falls into) she was considered to have "significant autistic traits". The next number bracket was defined as having ASD (another of my DDs). And finally, above a certain number the child would be considered autistic. Presumably there's also a score of zero, where someone has no autistic traits.

Did I completely misunderstand what the psychiatrist told me? It was a couple of years ago now. When I read threads like this I think I may have just made that all up and I'm confused.

Jellycats4life · 03/05/2023 19:43

I’ve never heard of anything like that. How can “ASD” be a milder grade of autism than “autistic”?