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

[UndertheCedartree]

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.

I thought it was a question, yes, as in the person could respond. I didn't see it as rude or ridiculous. I think the poster was basically saying this is how that made me feel - is that what you meant?

Yes, that's an interesting point and someone up thread did say something similar in that people may use it when they think there is 'something' but they're not sure/don't know if the person is diagnosed.

@UndertheCedartree and @AbsoIutelyLovely - for what it's worth, I was diagnosed autistic at 45. Running up to that point, I'd had sleep problems for decades - broken sleep, lack of sleep etc to the point where I'd more or less accepted that I was only going to get four hours a night in two stints for the rest of my life. I've been prescribed the NHS Sleep Hygiene leaflet (useless) and amitriptyline regularly, and while it physically got me sleeping, it wasn't "quality" sleep.

I only mention this because it started to affect my work and my employer paid for a private GP appointment, and they prescribed melatonin (Circadin, 2mg). It instantly fixed my sleep problems.

That was all pre-diagnosis. Since then, on speaking to lots of autistic folk, it's incredibly common for insomnia and broken sleep to be a comorbidity, and not only that...melatonin is (anecdotally) the only thing that helped.

It's really difficult to get NHS GPs to prescribe it, though (in my experience, at least).

I don’t usually care what it’s called, but I’m not a huge fan of “on the spectrum”. On the odd occasion I need to disclose, I usually just say I have Asperger’s, or sometimes if more informally, I have the ‘tism. DS prefers to say he’s autismo. Tbh the thing I hate the most is people taking their own preferences and proclaiming that everyone wants to be called that, and that anything else is wrong.

Just opened this thread this morning to see that my response was called bizarre and stupid!

A couple of posters said that it annoys/bugs them that people like Darwin, Einstein and Newton are often considered autistic through a modern gaze and I asked why is bugs them. Why is their automatic response to dismiss the strong possibility that these individuals were autistic? The implication is that they think autism somehow besmirching these figures and their contributions and so I asked whether that is what they think. They could have defended their position if they chose to.

Also, the poster who called my question bizarre and stupid lifted it out of the context of the rest of my post - if you read the whole post, rather than just the question in isolation, it is clear what I am asking.

Thanks for the defence @UndertheCedartree

@UndertheCedartree

But surely everyone is on the 'neurological spectrum'? So calling someone who is autistic 'on the spectrum' specifically to refer to their autism makes no sense?

My take exactly.

I agree with this - I hate people telling me how I should refer to myself because of their preference. There’s a local autism group that does it a lot, and it really grates on me!

every body is still an individual and has their own preference about their own identity.

re disability - I don’t class my Asperger’s as a disability when I fill in forms etc although it affects me daily, where as my son does; he’s mainstream etc but struggles a lot more than I do. But I would never tell another person they are or aren’t disabled.

I also agree with a previous poster way back who said it’s really hard to have the same condition given to people at such different levels of affect. It’s where the term Asperger’s was useful I think. I know friends with children who have autism who will never live alone, nor talk, still teens in nappies etc, and it feels so odd to me that my son has the same diagnosis yet is studying a levels. I can’t put my finger on why, but I almost feel like it lessens their struggles if that makes sense?

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

But it is applicable to plenty others. 🙄

I don't mind 'on the spectrum' but I loathe 'I have the tism'. Makes it sound like an infection or disease.

To each their own though.

But that isn't everyone with the diagnosis, so the theory clearly doesn't work.🙄 I find it's usually used by people trying to say that some people aren't severely impacted/ "autism is autism" or their autism is just as severe as someone non-verbal, incontinent etc, like a way to justify needing support (not saying anyone doesn't need support just that it's used in this context alot).

Do you wonder why some people feel the need to justify their support, when people like you try to turn every thread into complaining about so-called high functioning autistic people?

Let's be nice!!!

I've been thinking about this thread. I have sympathy OP that this phrase irritates but I think we all have to endure phrases or descriptions of ourselves that we don't like and can't really control. Like I used to hate SAHM and I know others who thought full time parent was offensive. I changed jobs once doing exactly same thing but the second co gave me a different job title I didn't like at all whereas I had like the 1st place. These are just examples obviously, I'm sure we all have some. Just have to suck it up and tell those relevant in your life how you prefer to be referred to.

Thanks for that @xyxygy

I have lots of sleep problems. I've never tried melatonin but I now take quetiapine and sometimes lorazapam too to get to sleep. But like you it knocks me out but isn't a proper quality sleep.

With my children a really good sleep routine helps them, but the trouble is once that's changed for one night like in the school holidays when you want to do different things, it's hell to get back to it again!

I completely agree. People usually have very valid and sometimes personal reasons they prefer something if we'd only listen.

Where have I complained about high functioning people on this thread? I think you're projecting or reading something into it that isn't there?

This thread until this has mostly been quite accepting and respectful of different views which has been quite refreshing.

@Thriwit and autismo sounds great!

You're welcome 😊

We have liquid melatonin prescribed for my son. We used it years ago and found that it gradually stopped working. We've just started with it again to see if it will help again.

I know that you can get it over the counter in the states quite cheaply, they even sell them in gummy form like haribo sweets. If by chance you or someone you know is going over there.

The daft thing is, the one who proposed the idea that they were autistic - and supplied plenty of evidence to support it - is none other than Simon Baron-Cohen, the darling of the high-functioning vs low-functioning crowd.

I definitely feel that too. There is such a wide range of disabilities/difficulties and some people feel there are positives/super powers etc.

And autism can be so hard that I understand wanting to try and improve people's self esteem by talking about super powers etc. It helps some people to accept themselves or understand themselves better. But it does really seem to grate when you consider the people that actually don't have super powers, that actually there aren't really any positives to their autism. I don't know what the answer is, but I think we need to make sure all voices are heard so the non-verbal don't get marginalised and forgotten about.

I've never heard 'I have the tism' but sounds like the kind of thing my teenager would say in an ironic way. Not sure if that is how it is said though!

We all need to listen to each other.
@Cuckoosheep has been giving us some really good insight into her experience with autism. I haven't felt she is complaining, just explaining frustrations.

@thekindlyone it would be good to hear your experience too. Have you felt the need to justify your support?

I used to hate SAHM too because it sounds like you stay at home all day! I think it's because I take it too literally but it doesn't make sense to me! ☺️

You've not @Cuckoosheep , your posts have been very insightful of your experience.

Let's keep this thread respectful of all views, please 🙏

Thank you. I do have a Canadian friend I could ask.