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.

There is a huge difference between autistic masking and putting on a smile because you're at work and have to be professional.

I masked because the alternative was shutdowns where I coudn't speak, or worse, meltdowns where I would harm myself.

They consider impact on functioning. I think that’s why pp meant by life, surely?

A lot of the disagreement about autism comes from the fact that people are trying to describe a very complex condition with one or two words. Autism is a combination of communication profile, sensory profile, cognitive profile, executive function, internal distress, masking style, demand tolerance, care and support needs. Those things vary independently, so two autistic people can have the same diagnosis and completely different day to day realities.

The problem is that everyday language only gives people blunt labels like mild or severe, and those labels end up flattening the person. Mild often means the traits are less visible to others, not that the internal experience is easy.

Accurately describing an autistic profile takes more than two words. You need to include all the categories.

For example, I'm an autistic person with situational mutism, high sensory, social-communication and mental health support needs, high masking + high internal distress, high demand dysregulation, mid cognitive and executive functioning support needs, low care needs.

My daughter is an autistic person with situational mutism, high sensory, social-communication and mental health support needs, high demand dysregulation, high cognitive and executive functioning support needs, mid care needs, mid masking + high internal distress.

We're both are autistic but our profiles and support needs are slightly different. I have high, mid and low support needs. DD has high and mid support needs. Some people may have only high support needs, some only mid and others only low support needs.

So the issue is not whether autism varies in severity. It clearly does. The issue is that the language we have is too limited to capture that variation. Until there is more widely accepted multidimensional language, people will keep reaching for mild and severe because they are the only shortcuts available, even though they don't really do the job.

My son has an autism diagnosis. His mother decided she thought there might be a problem and alerted school. Nobody at school had noticed but all were immediately apologised for missing the signs and decided to pay extra attention. As time went by, they decided they could spot more and more signs. This fed back to his mother's worries and so she eventually decided to pay for a private diagnosis at some local clinic. The clinic studied him and decided he was clear of ADHD but definitely had autism.

Here were his symptoms (he was about 10 when this was happening): he had an advanced reading age which was regarded as unnatural; he wouldn't play table tennis because the other kids weren't following the rules, which was regarded as a sign of inflexibility and rigid rule based thinking; he occasionally pulled odd faces; he sometimes became distressed in class and was allowed out for quiet time.

But: I used to read him loads of stories ever since he was a baby and grew up enjoying reading and going on to read as much as he could; we had played table tennis before and the other kids would simply hit the ball as hard as they could, not caring whether it actually hit the other side of the table; he just couldn't be bothered with this and stopped playing; He and I had a habit of pulling weird faces at each other and, I admit, he had developed a particularly weird one - this was just his attempt at humour.

I could go on. At every stage, my attempts to explain or account for these symptoms was met with me being told all about masking. The final report mentioned my input and explicitly explained it away as him masking with me.

It's a couple of years later, he's at secondary school, he's pretty happy, doing very well academically, has friends, enjoys films, books and role playing fantasy games. And he has an official autism diagnosis.

Threads like these are awful. Full of people desperate to compare strangers against their own idea of what autism is ‘supposed’ to look like. Here’s a novel idea? Why not just stop? Why do people need to be compared? Categorised into neat little boxes….why?
Do you all sit there comparing those with a diagnosis of something else? Deciding which of them are allowed to struggle? Do you treat those with stage 1 cancer like shit because your friend or your kid has stage 4? Dismiss their diagnosis because they don’t have to have chemo AND radiotherapy but your mate does?
You’d have to be a total cunt to do that yes? So why do it at all? To anyone? What does it get you? Does treating a stranger with such derision mean your kid or your friend’s kid, or your cousin will get something? Extra support? Funding? No. All it does is make you look like a total arsehole. I just don’t understand why there has to be this conversation on repeat at all. It’s utterly pointless.

We say someone has a mild or severe learning disability. That doesnt tell us what their support needs are but indicates that someone with a MILD LD may require more support than someome.with a SEVERE LD. I dont think it necessarily helps to focus on the disability. We should focus on the needs. I think better refer to the ASN and how you can support the person, as that is what is important. If we arent in a place of talking about the support need then, to me, using langauge like severe or mild lets the receiver know there might be more support needs for one than the other.

Noting the comments re pregnant - you would say heavily pregnant or early pregnancy so even then its not just pregnant or not - its talking about a different stage and what additional support/care mum might need in the coming weeks/months.

@Unusualdog the point is that most autistic people will have a combination of severe AND mild characteristics. Should that person be described as mild or severe?

Especially when ‘severe’ is assumed to mean non-verbal, in nappies with the cognitive level of a toddler.

On that criteria DS1 is mild. But has been largely housebound for the past 10 years since SS placement failed and reliant on me as parent carer with no external support. He cannot live or even function independently, work, form friendships or relationships etc.

How would it help anyone understand the reality of the impact on his (and my) life to describe this as mild?

It just means we are left to struggle on our own. He doesnt qualify for supported living or external support. We lost support from youth mental health and the LA when he became an adult and now won’t engage with privately procured support.

You may have noticed from my post that I’m not NT and I’ve also had breast cancer.
You were comparing breast cancer to pancreatic cancer as though they were both a single set diagnosis, and they’re not, they have degrees of severity with different prognoses. Sure, how we experience them will differ from person to person, but there’s no getting away from the fact that a stage 1 grade 1 breast cancer IS milder than a stage 3 grade 3, and that one type of pancreatic cancer has a chance of a better outcome than the other.
I’d much rather have had stage 1 grade 1 than I would the stage 2 grade 3 genetic breast cancer that I had, same as I’d much rather have the dyscalculia, social problems, and pathological demand avoidance I do have than be someone who has violent meltdowns and bashes their head against a wall. I’m not denying that it causes me major problems, I’m just acknowledging that objectively there are degrees of severity with all medical diagnoses, and there’s nothing wrong with acknowledging that. How we feel about our condition is as individual as we are, but there comes a point where you have to be dispassionate about it.

It's strange that you equate the neutral observation of 'recognising a difference between' with, in your own words, 'allowed to struggle', 'treating like shit' and 'dismissive', and saying people are treating strangers 'with such derision'.

You seem rather derisive, honestly, wading in and calling people 'cunts' and 'total arseholes'.

You're also framing the discussion in such a way as to erase the issues that family members of profoundly or severely autistic people may have with a lack of differentiation. You're making it all about the loudest, lesser impacted people, and ignoring those who can't advocate for themselves.

"Do you all sit there comparing those with a diagnosis of something else? Deciding which of them are allowed to struggle? Do you treat those with stage 1 cancer like shit because your friend or your kid has stage 4?"

No but if someone said there weren't different severities of cancer, and if you say there are, then you're a "cunt" who treats people with stage 1 cancer like shit, then we might question that logic a bit.

No there isn’t, it is just a matter of degree.

I’m speaking as the Mother of a young autistic daughter and I’m flabbergasted by some saying that if an autistic person is functioning, no learning difficulties has a job , married etc shouldn’t have an autism diagnosis as they clearly can’t be autistic . My daughter is five , she was non verbal until four , sensory issues didn’t sleep for four years I was up with her often eight times a night , severe meltdowns , stimming etc. she is now fully verbal , chatty , funny, many of the severe behaviours have quietened but she is still autistic .

Autism is a brain that is wired differently not wrongly , she doesn’t have learning difficulties and will likely if she chooses go to university, marry etc. she already shows advanced strengths in design concepts so may be one day be an engineer or another profession which plays to her strengths. It is the co morbid’s which can exist with autism that causes the most issues not the autism itself …there is a difference . My girl will always be autistic and what struggles she will face in the years to come are yet unknown , but she is undoubtedly autistic I knew before anyone else noticed any issues.

one of the team “ psychologist “ who diagnosed her was autistic herself, married had kids was diagnosed at 4 .

No, it really is not.

Neurotypical people don't feel physically sick from masking (or in some cases, make themselves sick). They don't come home and hurt themselves (or others) because of how unwell it makes them.

I think it’s very difficult to keep up with correct language if you are not working or involved with an institution that promotes diversity awareness and we shouldn’t reprimand people for using outdated language as they may not be aware. I worked for a local authority and was always aware of the new correct terminology, but now I’m retired I know I’m falling behind a little. I believe ‘mixed race’ is no longer appropriate and happy to be advised if so of what the now acceptable term is, but don’t blame me for not knowing

My son is autistic. I’d call him high functioning but others may say he has mild autism which would not offend either or us. Both terms do not give any indication of the complexities that lay behind them, but anyone meeting my son would not immediately be aware of his disability.

I often find that the very institutions that actively promote correct language are usually the worst at understanding the implications of the Equality Act.

I don't like "mild/severe" being used in relation to Autism, because there is still a huge degree of ignorance that confuses neurodivergence with mental illness, and using terms commonly applied to other illnesses just continues to propagate this misperception.

As touched upon already, it also perpetuates this nonsense about "the spectrum" being a linear metric with "mild" at one end, and "severe" at the other.

I don’t really think anyone can state this as fact. I’m sure there are NT people out there who have had to mask for various reasons and it’s had a huge impact on their physical and mental health.

I don't like "mild/severe" being used in relation to Autism, because there is still a huge degree of ignorance that confuses neurodivergence with mental illness, and using terms commonly applied to other illnesses just continues to propagate this misperception.

@XDownwiththissortofthingX
Autistic people do have a higher incidence of MH issues compared to the NT population though, and this is not something ‘separate’ from their autism. It’s often directly related to how the autistic brain works. It will vary enormously from person to person, but in general there is a higher incidence of mental illness in this population.

Also mild/severe are terms applied to lots of illnesses and conditions, not just mental health related ones.

Then I would suggest they are probably not NT at all.

Exactly. I think a certain poster would be quite shocked to find out that there are doctors, surgeons, teachers and a variety of people in different professions who have been diagnosed with autism during their lives.

An autistic person, provided there are no learning difficulties, still has a developing brain as a child, like anyone else. A very obviously autistic child can learn to adapt and interact and behave (to the average onlooker at least) as ‘normal’ as they progress through life. Some may never manage this, but many will and do.

It’s a bit of a kick in the teeth to those of us who have made lives for ourselves, in spite of some pretty major challenges (and at a time when there was zero help) to be told we clearly “can’t be autistic”

Of course, the co-morbidity has long been recognised and understood.

That still doesn't make Autism a mental illness in and of itself, and if you maintain otherwise you are pretty much making a declaration that any autistic person is mentally ill by default, which simply is not true.

The fact mild/severe is used for other illnesses is precisely why I object to it being used to describe autism, because neurodiversity is not an "illness".

Different degrees of response to the stress of masking does not mean masking is different, it means response to stress is different.

Who do you call ‘NT’?

It's also used for learning disabilities/intellectual disabilities which are not an illness.

Who anywhere has suggested treating anyone like shit? I treat the students with autism I teach with respect and consideration. I have strong relationships with them and their parents and have been praised for how I work with students with autism and help them to thrive. None of that means I need to consider their autism as severe as that on my friend's non verbal son.

This is where we differ: I don’t necessarily see the other co-morbid conditions as separate. For example someone doesn’t ‘separately’ have asd, adhd, dyslexia, dyspraxia, ocd, gad if they have all these diagnoses. They may be seen as different in that different specialists are required to support the differing areas…but it’s all the same brain. The neurodivergent brain. Some people will have asd and adhd, others won’t. Some will have asd and ocd, others won’t. Or you can have dyslexia and not be autistic etc. It varies from person to person.

I wouldn’t say dyslexia is an illness either, but you can absolutely have milder and more severe presentations and people aren’t attacked for saying that.
In the same way I don’t see autism as an illness, but certainly some people are more severely affected to the extent they need far more support than others do.