Explain to me why you offence is caused by saying things like 'mildly autistic' etc.

[Purpleturtle45]

If ASD is a spectrum why do people commonly disagree that you can be mildly autistic or severely autistic etc.

My daughter is diagnosed with ASD, however you wouldn't really know unless you knew her well. She goes to mainstream school and copes well with everyday life most of the time so to me I would say she is mildly autistic but I often see people getting ripped to shreds on here for using that term.

Genuinely wondering how 'spectrum' can literally be in the title of the condition but people disagree there can be different severities.

The words "mild autism" are short for mildly impacted by autism.

So she had mild autism in the early stages and later would not be described that way. Many people with depression could describe the same changes.

Many conditions will change the same way with life changes. I have a mild version of rheumatoid arthritis. Normally I have no symptoms at all. But if I get a period of high cortisol levels for any reason it will tip me into state where I'm on crutches crying out with the pain. At that point, my condition is no longer mild.

I don't understand why the ND community believe that being ND is so special compared with other conditions. If you respond to this comment please bear in mind I have ADHD and am married to someone with mild autism (which was far from mild during a house move 4 years ago).

School staff here. He’s talking disablist shite. How do I know? Because I work with these kids every day, I actually understand the process of getting a diagnosis, the process of applying for an EHCP and so on.

He can bitch all he wants about taxies, but maybe, just maybe previous governments hadn’t shut down so many special schools and actively stopped the building of any new ones, we wouldn’t need so many . Some kids go to school in different counties (Think Harrow to Watford, not 5 mins across the border) , because that’s the only school suitable for their needs(or simply the only one that will take them/has spaces).

Many people only function okay because they set their lives up to accommodate their needs - if those accommodations change then everything falls apart very quickly.

This is true of NT people too. Plenty of people set up their lives in a way that suits them or get jobs that fit. I've known plenty of NT people have breakdowns or MH crises when a job changes, house move is needed, unexpected events occur etc. Perhaps these people weren't NT after all?

I think the reason ND people can come across that way is because many of us are late diagnosed and have had years (decades often) of our struggles being ignored and brushed under the rug.

So, now we have a diagnosis and an answer, we're more confident about vocalising how much we struggled and were ignored and dismissed by family and professionals.

It's not a case of believing we're "so special" - it's years of frustration coming out.

Who knows? Lots of people spend their lives without a diagnosis.

I had (what I thought was) a mental breakdown at university - if you'd asked me then if I was ND I'd have told you not to be so silly.

Turns out that's not so silly after all. It was an autistic shutdown and I've had several more in the years since.

I had those years too, I was diagnosed at 61.

Our difficulties in recognition were shared by ME, MS, Lupus, Inflammatory Arthritis (especially in the back where it won't show on scans for years), Ehlers Danlos, Marfans, and probably a whole host of other conditions I don't even know about.

I still do not understand why the ND community, if there is such a thing, believes it is so apart from other conditions that nobody should be allowed to use the term mild.

It's unreasonable.

I don't think they do believe that. That's what you've inferred for some reason.

Plenty of people with other conditions don't like their illnesses being described as "mild" either. It's not remotely unique to being ND.

I hate seeing people limit categories to 2 as if by some strange forces, no one can wriggle out of them. It doesn't have to be either mild or severe. There is a huge gap in between.

You can always use that to fit your description: mid, moderate, mild to moderate, moderate to severe, mild to severe sometimes/in different situations, mid to high needs, low to mid to high, etc.

No need to stick to 2 ends and fight about fitting into them as if it must be either one or the other.

DD is low(technically inexistent) support needs at school, so much so, some teachers didn’t even know her name. That doesn’t mean she’s ok, just that she’s incredible at masking and doesn’t want any attention.That changes at home. Like I mentioned previously, I manage the crap out of her/her needs (to the point I’d be considered controlling to a NT teen) , including helping with school work. Eating habits, sleeping habits, sensory needs , crying meltdowns , social/friendship issues and so many more. She’s lucky I have the time, will and ability to help with all of it. At the same time , her needs are nowhere near as high as so many other children. Would an added classifier of moderate fit better ? Maybe . Would a different environment/type of parenting make her needs higher/more noticeable? Maybe.

My hearing loss was mild, it's now moderate. I didn't mind mild, meant there was an acknowledgement of the loss, but I didn't need much external support. I needed to see faces when people spoke and I needed people to have my attention before speaking not after. I was tired!
At moderate I got hearing aids, I still needed the same support as mild, with a bit more on top in the form of the aids. My hearing fluctuates due to fluid in my ears. Some days I can barely hear a thing, other days (with aids) the world is much clearer. The non hearing days are exhausting, I spend ages looking around terrified that someone's tried to talk to me and I've rudely ignored them.

What other conditions would those be then? I honestly have only heard ND people and their parents insist that autism cannot be mild/severe (or any other terms that mean the same thing). Cancer, arthritis, dyslexia, depression, even ADHD - there people seem fine with the idea that some have more severe versions than others.

I've seen it in communities for PCOS, endometriosis, ME, Pots and multiple other "hidden" illnesses and disabilities.

I have autism as well as several other health issues and while I know in my mind that other people have it much "worse" than me, I get incredibly frustrated when people say "well, luckily yours is only mild" as it just feels incredibly dismissive to have your struggles shut down like that.

Like PP has said, it's not a competition. My struggles not feeling "mild" to me doesn't mean that Susan doesn't have it worse, or that Joe doesn't need 24 hour care. Why can't people just get support for their struggles without it turning into a massive argument about a descriptor that doesn't actually matter all that much?

How a stranger describes their life doesn't have any impact on your life.

I haven't seen that at all.

I've got pcos. But I managed to get pregnant v quickly and I have my weight in check etc. I would definitely say it's mild compared to some others.

Have also never heard friends/family with endometriosis or ME saying that mild/severe forms don't exist.

But I guess there's always someone ready to take offence. I just don't think those people (who often shout the loudest) should be the ones society listens to.

ETA I see myself as very lucky that my pcos isn't worse. I agree someone telling me to count myself lucky is a bit patronising, but they wouldn't actually be wrong. Many people are much worse off, whether with pcos or any other illness.

Well, we all have different experiences :) I also have PCOS and was fobbed off for years until I got my diagnosis - even now, nobody is interested because I don't want children so it's not seen as a problem.

I'm not offended btw, just giving my opinion, the same as everyone else is free to do.

I personally don't understand why people care so much about other people describe their struggles or issues. Why does it matter?

Hmm, why does it matter?

I think there are several reasons. A basic one is resource allocation. Someone who is incontinent, non-verbal, incapable of going to mainstream school etc should be given more support and resources (of which there is only a finite supply unfortunately) than someone with a milder form (or lower-need form, or is higher functioning or whatever terms people want to use).

It's also insulting to the parents of children with a much more severe form of autism. By refusing to admit there are milder or more severe forms, their very real struggles are minimised and dismissed. For me this is the main reason.

I also think it's a bad mindset to teach children. Much better to acknowledge their struggles but encourage them to see all the things they're capable of and, yes, count themselves lucky/look on the bright side/see the silver lining or whatever. Mindset has a very real affect on outcomes.

Then to be completely honest, there's my personal bug-bear that a lot of autistic people here on Mumsnet act as if they are the only ones who suffer and that their suffering is worse than anyone else's. I find it annoying and I end up joining in the arguments here as a result.

@Thatsalineallright

But resource allocation should have absolutely nothing to do with how people choose to describe their own conditions - it should be awarded on need. Susan saying she feels like her autism isn't mild shouldn't have any affect on Joe needing 24 hour care because of his autism.

I do understand that it must be frustrating when someone with "mild" autism doesn't acknowledge that other people have it worse, but also, it's not their job to do that. Someone saying "I really struggle with x" doesn't mean that they don't understand that your child also struggles with X.

I also agree that people should be encouraged to look at what they can do rather than what they can't, but that doesn't mean people can't acknowledge their own sadness or frustration around what they can't do or what they struggle with.

If you find how other people describe their conditions annoying then that's absolutely your perogative, of course, but some things just aren't worth arguing about IMO. You can fight your own fight for your children without bringing other people into it.

It’s the environment that matters.
Autism + environment = outcome.

I do agree with this to a large extent, but can get very frustrated by it too. Because it’s not as simple as that.

I get frustrated when people say the problem is that the world isn’t set up for autistic people and that if their environment was adjusted all would be well.

I get frustrated because that may be true for some autistic people, but it’s not true for all. The environment matters a lot to the latter group, but make all the changes you want and they’ll still struggle.

I’m not only talking about autistic people who have more obvious and profound needs either. I’m talking about those who may have no intellectual disability, but who have serious MH needs. And unlike a pp, I don’t see those needs as being always separate to their autism. Often the MH issues result from the way their autistic brain works.

DC is autistic and has OCD directly resulting from ‘black and white’ autistic thinking. (MH services won’t treat as he’s autistic btw. They say he needs help from autistic services. They see how intertwined the conditions are. The problem is, of course, that autism services don’t focus on things like OCD and refer him back to MH services, but to no avail.)

The environment being perfect will help him obviously, but the intrusive thoughts will still come, the compulsions, the rigid thinking, and they are the most debilitating aspect of being autistic for him.

So, autism + environment = outcome??
Yes…but I’d caveat that statement to a large degree. There is often more at play in an autistic mind.

I think it especially important that specialists realise this @Mumptynumpty.

But given that you can’t receive any treatment for an autistic shut down on a mental health ward (what treatment even is there for that?) then it leads me to think that she might have, for instance, also been depressed or otherwise she would not have been admitted.

Actually, there is treatment available. I've been medicated to help me out of autistic shutdowns several times throughout my life.

Many people with autism end up on MH wards when they are struggling and need to be kept safe.

Same with OCD. You either have that as a separate condition overlaid on autism and then you should have the usual treatment for OCD or you don’t actually have OCD at all just something that looks similar in some ways but is part of a spectrum of ASD. It is usually distinguished by whether the compulsive actions are a self soothing behaviour that functions for the person to relieve distress or whether they are directly related to egodystonic obsessional thoughts which are resisted and don’t serve a useful function. If it’s the latter it’s a separate condition of OCD. If it’s just a rigid preference for order and ritualised ways of doing things then it isn’t.

Yeah, you see I disagree that it’s a separate condition. It’s linked to the DC’s autism as is his dyslexia. All different facets of the same brain.

Definitely OCD btw. Stimming etc happens too but that’s very different. Only superficially similar.

I thought people usually got cross about being medicated with antidepressants for shut down given that they would distinguish it from depression and suggest that a period of rest and no demands (not likely on an MH ward) would be the answer.

I have often wondered if it’s reasonable to regard shut down as a modified presentation of depression in someone with ASD or if it’s a wholly separate issue. I expect different people would say different things.

I don't particularly care if Susan says her autism isn't mild. I do care if she says it is impossible for there to be someone with milder autism. The latter, said loudly by many voices, makes conversations around resource allocation very difficult.

Similarly someone saying they really struggle with Y isn't a problem. It's only when they say no one else can struggle more (which is what they're saying by denying the existence of mild/severe forms of autism) that it becomes an issue.

Depends. Sounds like she might have a MH co-morbidity. However, with most conditions it’s not unusual to fluctuate through mild, moderate and severe. Or if the change is time limited it might be considered a ‘flare up’. These are terms commonly used to describe many many conditions.

Nobody is saying that severity can’t change.

Yes, sometimes other conditions are not separate from autism, they're as a result of autism or issues surrounding dealing with it. This is true in some cases and for some people.

In other cases or for some people, it's not. It’s separate depending on other factors. This is really a simple concept.

I'm not sure how clearer I can be about this point or why some pp want it to be true for everyone and/or are trying to make it seem more complicated than it is.