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.

“It's the current fashion“

was said.

@Cr055ing Apologies - I wasn't saying that autism is fashionable / a trend

I was agreeing with the wider point that I think it's OK to describe someone as mildly autistic if they're not hugely impacted (coping in mainstream school) and severely autistic if they are (nappies, non verbal)

You took it wholly out of context. The "it" referred to the use of the word mild, not to autism.

isn't about how MNers would categorise them though, under this system of two different diagnoses it would come down to how a doctor (ed psych? I can't remember who the person who does the diagnosis is called, it's been bloody years since my ADHD one) classifies them according to a list of criteria.

It comes down to the classification criteria and they are the outcome of discussions that are at least as much, if not more, political rather than clinical. The current criteria and DSM levels are in part an outcome of the demand not to break down the diagnosis from those who prefer it that way.

It can be helpful to think about presentation - some people’s presentation is subtle, and most of the time you wouldn’t notice they have autism.

Ds is in this category. He believes I don’t really love him or I’d have helped him end his life. I had to body block him from throwing himself down the stairs at the age of 8.

What he goes through is not mild. But to the wider world, including many of our relatives and teachers the struggle is invisible.

With children whose struggles are more obvious, precision of language matters. In the past a diagnosis of autism masked concurrent issues. It’s important that we pick up everything, so we can support people effectively. A person might be non-verbal, autistic and learning disabled, or non-vocal, autistic and have a normal range IQ. How you interact, and intervene will differ. We also need to identify and treat comorbidities.

From an intervention perspective, it’s sometimes more straightforward to teach or support the absolute basics of communication, and is 100% beneficial to the autistic person.
Subtle deficits of communication are profoundly isolating, and can damage or collapse relationships. Efforts to teach or change communication at higher levels are not straightforward, and may be as harmful as helpful to the autistic person.

High masking, suppression of obvious stings and self monitoring of every expression takes a heavy toll on energy, mental and physical health. There’s a brilliant BBC podcast called 1800 seconds on Autism that I’d recommend.

Self injury is similar - in some forms it can be relatively straightforward to block and replace (with the right expertise), particularly if the replacement is communication strategies. But in milder presentations, it’s more complex, particularly if the self injurious behaviour has a regulatory function.

My ds self injures almost daily, in a form called body focused repetitive behaviour, which is compulsive. The wrong intervention can make it worse, and without access to an expert in this, our best strategy is to mostly ignore it after making it as safe as we can. The potential to do him more harm is too high. It peaks in situations he cannot avoid and is how he avoids melting down or shutting down. It’s a choice between a rock and a hard place.

What is it about autism that causes such an emotional reaction to the words that describe it?

I've got asthma which I'm very happy and thankful to describe as mild - it does impact my life, it can still kill me if untreated, but it's manageable with lifestyle changes and medication. It's in no way comparable with someone requiring frequent hospitalisation.

Just like there's a huge difference between my brother's autism (PhD, successful career, unable to set foot in a shop, emotionally unstable and struggling socially) and his son's (non-verbal, will always require 1-1 care).

Next time someone you know confides in you that they have breast cancer try responding with: 'thats a 'mild' cancer though it's not like you've got pancreatic cancer'

Then consider their response to you & how you would feel if it was the other way around.

That's essentially why you are causing offence with your statements about autism. It's how the person is affected, how disabled they are by it etc that matters.

What is it about autism that causes such an emotional reaction to the words that describe it?

Because it's fucking awful to have your struggles constantly dismissed and brushed aside, that's why.

10 years ago my DD was diagnosed with HFA.

Because they were high functioning school decided an ECHP was not necessary.

10 years down the line, out of mainstream school since early secondary with 'complex mental health problems'.

I worry that using HFA would mean that those who are a few steps away from crisis get no help.

I wish every child had appropriate help and support.

You can’t define autism as either coping in mainstream school( hugely debatable anyway)or in nappies - that’s ridiculous.

I already answered that question in my comment, if you read it through.

A lot of the posts here are very wrong.
A person can be diagnosed with autism, without t not severely affect their lives and struggle badly. I speak form experience.
They can be exceptional smart and a star student. To the outside world, most don't know my son has autism. Teachers are often surprised when I tell then- if they haven't read his notes.
When he was younger, it was much more obvious. Now he's older, he mostly hides it well.
He's fine with change, busy environments, loud noises.
Does that mean he's "grown out of it"? Absolutely not.
My friends son "max" is the opposite end of the spectrum - can't speak or communicate. They shouldn't both have the same diagnosis, as max has very different needs.

Thank you. I meant the fashion was that autism cannot be described as mild/severe.

How would you describe someone who is coping in mainstream by subtly self injuring (let’s say stabbing their thigh with a compass under the desk) to keep themselves from either having a melt down or a shut down in that setting?

And I say this as someone who would describe myself as having mild autism

Given the number of people saying other people can’t dictate how they define their own disability, there is an awful lot of language policing in the political autism movement. People with autism are told they must not describe themselves as people with autism - they must refer to themselves as autistic people. They are told they mustn’t identify as mild or high functioning. They definitely shouldn’t refers to themselves as Aspie or Asperger’s. And on and on it goes. Normally from late diagnosed people who have turned autism into their whole identity. Most articulate adults I know who are autistic and who were diagnosed as children or teens can’t be done with any of it. Their voices are not heard in the debate.

I don’t see it as offensive and call myself mild AuDHD. I am a fully functioning member of society, kids, married etc. Years ago I would just be called a bit quirky.

For me there’s a spectrum like the first response but you can have people who are very affected by noise and those who aren’t as much. It comes down to how much you react or find situations over stimulating.

I am less affected by crowd noise than others, if I’m emotional that tolerance decreases for sure.

I understand the you have cancer or don’t but within cancer diagnosis there are some we would prefer. Stage 1 is different to stage 4. Guess the phrase of less severe which might be better than mild

So if people tell you:

"We understand that compared to the rest of society, you really struggle to cope - of course! You have autism. We acknowledge your struggle and stresses, and wish to support you. But your autism doesn't impact you as severely as it does other people with autism, therefore you'd be considered to have mild or moderate autism, not severe or profound."

Would that make you feel dismissed and brushed aside?

I think like many other things it's just used as a shorthand, and some people take it more literally.

Absolute rubbish- autistic people are simply saying other people can’t dictate or dismiss the severity of their autism and they can’t.

Ok, I get that, but what would be helpful for you here? Would you be more comfortable with describing it as grade 1, grade 2, etc or low /medium/high level or what? Because no one is saying you haven't got autism, just that there are forms of autism with significantly higher impact.

Yes.

Because it's not up to anyone else (who is not a professional) to tell people how much their autism affects them and how severely they struggle.

My struggles are my struggles and how severely they impact my life is not for anyone else to decide. So, why do you have to compare them to someone else's? What's the purpose of it? I don't get it.

I don't need or want to be compared to anyone else with autism. I want my struggles to be acknowledged and supported on their own "basis", just as someone with severe or profound autism should be supported without reference to my life and experience.

But literally on that chart, there's a line that goes from "less autistic" to "more autistic". It's there in black and white, on the very diagram you're using to tell us that there is no such thing as "less" or "more" autistic!

I would personally be happier with different diagnoses altogether. I actually don't think it's fair to anyone to say someone who can work, hold down a job and have a family has the same condition as someone who is non-verbal and incontinent and who will always require 24/7 care. It dismisses both sets of struggles and means nobody is happy.

I haven’t read the full thread, but I think if you describe anyone’s autism as mild, it can come back to bite you on the bum. My eldest wasn’t diagnosed until he was just turned 17. We were all quite casual about it when he was placed on the waiting list for assessment at 12 because, hey, he was doing just fine academically, seemed to be tentatively making a few friends in secondary school and was generally a happy chappy with what seemed to be a few ‘quirks’, which I absolutely loved about him, When he was 14, it was as if a tornado hit and he went from coping well (as far as we knew) to crumbling into pieces. Those teenage hormones combined with ASD were a lethal combination. We suddenly learned what it looks like when autistic traits come crashing to the fore. We realised just how much we had been holding him up, giving him structure and managing him. As soon as he tried to be more independent (and I was very much in favour of this) all the wheels started to fall off. We had a couple of absolutely nightmare years. He’s a bit more settled now, but definitely on a hair trigger when, for example, there are coursework deadlines to meet or he has inadvertently made some social faux pas. I think a lot of people don’t understand how exhausting it is to mask. Even their own families can miss what’s really going on. Mild my arse.

I don't think anyone is actually trying to do that?

People are mostly either speaking about themselves, their close family members whose struggles they are intimately aware of, about how others choose to describe themselves, or about the usefulness of a formal diagnosis of severity (that I imagine could change throughout a person's lifetime, and might need reassessment).

I haven't read every single comment, just skimmed, but I don't think anyone on this thread is saying that they personally want to be able to assign a label of 'degree of severity' to casual acquaintances?