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.

I think science will help us sort this one out. At the moment it is moving in the direction that ND people have a gene set that predisposes towards being ND and brain patterns, and possibly even a gut biome, which identify them as ND.

I wait with anticipation to see where this research is going to end up.

How could you possibly know that? It could well be just as exhausting and debilitating for them, hence why NT people also experience burn out or breakdowns.

I speak as an ND person who masks who is married to an ND person who masks with non ND friends and acquaintances who I have seen mask.

All result in similar actions and consequences, I think they are directly comparable.

For example, the NT person with PTSD masking until they experience a trigger which results in a meltdown, the depressed person masking until they no longer have the energy to mask and breaking down.

There is way too much thinking by ND people that they are "apart" and "special" in some way going on, for me. And if it continues it's going to cause more and more issues as a greater and greater proportion of the population get a diagnosis.

What matters is that people who need support get it, within the bounds of society being able to provide the support that is needed and that those resources are shared equitably, not who has what specific diagnosis.

I think these discussions would go better if people didn’t make such leaps to assume the worse in people. The leaps and wild accusations are crazy.

I agree with everything you've said.

But I also think it's important to recognise that autism is a disability and that by default, we experience the world in a way that many NT people don't. That doesn't mean NT people don't suffer, have breakdowns, or burnout.

The explanation fits exactly. You haven't understood. Nobody can be "mildly" autistic. They can be impaired/impacted to a greater or lesser degree. It doesn't mean they're incorrectly diagnosed.

But saying someone is impacted to a lesser degree is what people mean when they say mild. People don’t mean someone is incorrectly diagnosed.

(I do understand why some autistic people don’t like it as often it means that people simply aren’t seeing their struggles, Others think they’re mild but they may have many, many hidden difficulties.)

I didn’t say anything about incorrect diagnosis. Therefore I think it’s you who has misunderstood.

can you explain how saying impacted
to a lesser/greater degree is different to saying mildly or severely impacted?

my dd is autistic, she is 18.
If you met her, or if you saw her on a tv show, you might not understand why she is autistic.
But if you saw her at home, curled up in a ball, overwhelmed by the world, unable to eat anything, or only very beige safe foods. etc etc then you see a different person.
The trouble for many autistic people, especially women, is that the world doesn't see the effort it takes them to be part of the world.
At family events, we leave early, we plan a place in the house where she can retreat to for a while when it gets too much.
Before we go on holiday we have to do a load of preparation about where we are staying, the house, the bedroom, the town, the journey, the food etc etc, otherwise she goes into melt down before she has left the house, for her getting into the car without that prep is like stepping out of a plane without a parachute.

But if you met her on holiday? You'd probabaly chat away and go Oh what a nice girl.

Totally agree. Those with late diagnosis that shout the loudest really don't understand. The super power ones too. For the most severely affected it's not a super power, its a 24/7 struggle for them and their carers.

I wish people could live 24 hours as a severely affected, non verbal, major care needs, head banging, self harming due to chronic routines and completely unable to tolerate changes, living in residential care. Its a completely different world.

AuDHD mom to an autistic (likely also AuDHD) son. I find that the less my autism impacts other people, the more it impacts me. Implying that I am high functioning because I can mask is not high functioning when recovery leaves me debilitated for days/weeks/months on end. I may appear “normal” for short periods of time for the comfort of other people, but it’s absolutely at the expense to myself. When I am not able to function, people question why I can’t do x when I could do it the other day. It’s not a choice. It’s actually much more freeing to be openly autistic because people expect less of you. Ultimately, it is a spectrum and people are going to identity with it differently. Even between my son and I, we use different language. He says “I have autism”. I say “I am autistic”. It doesn’t mean either of us are wrong, it’s just personal preference. Nor do I take offence to the puzzle piece symbolism, whereas others do. I do also believe that “levels” can change throughout life, I’m glad we don’t have them in the UK as they do in the US. That being said, I do think there’s profound difference between being non-verbal autistic.

Evidence for what?

As someone with a child on the spectrum who attends mainstream school, achieves well academically and has friends I have no problem accepting he has milder symptoms or lower support needs than the non verbal children still in nappies who are also 8 at his autism friendly spaces.

However he is still massively affected compared to his neurotypical sister. He can't sleep for a start, melatonin 5 days out of 7 gets him a 9.30 bedtime, the 2 nights without are hellish, last night it was 2am and he needs us with him or gets violently dysregulated.

Small changes to routine can make it impossible to get him to school, leading to lots of juggling of both our working hours and still lots of us being late and employers needing to cope with that. Not all have. Jobs have changed because of it. He also has physical conditions leading to hospital trips and admissions and ambulance trips etc, an inability to relax as a family in lots of ways.

Even 'mild' autism has a huge impact on the individual and their family and I think that's why some people dislike severity levels as it's used to imply that for kids like my son they are just quirky. When actually he's been in several life threatening situations because of lack of danger awareness and my level of awareness day to day is set at 'toddler climbing on bridge over crocodile filled swamp' levels at all times as even now he can do random and unpredictable things due to lack of impulse control.

Is it's easier for us than if he required a hoist due to severe physical disabilities or required a one to one constantly due to non verbal autism and double incontinence? Yes, of course it is! But it's streets apart from parenting a neurotypical child.

Yep! My son recently came to a new gym with me to use their childcare, I'd pre warned about his asn. They were prepared. He was the best behaved child they'd ever met, engaged, kind to smaller children, conscientious with tidying and manners. They were full of praise while my stomach was in a knot seeing him mask so hard. By the time we got to the car he was wailing and distressed like a child who had been beaten. Screaming and stimming. Took 2 hours under a weighted blanket in a dark, quiet room for him to be back at baseline.

@Barnbrack
We’re prescribed melatonin 7 days a week. Is it supposed to be five days out of seven?

They can build a tolerance if no breaks so we were told either only school nights or breaks on school holidays. Also the 2 nights a week he's allowed a movie in the evening while melatonin days we're strictly no screens as it definitely stops it working for him so the 2 nights off buy our compliance the other 5 days.

We've tried no screens without melatonin, doesn't help before someone blames the 2 hours of cartoons at the weekend that stand between me and insanity

I so agree with this. One of my son’s problems is conversations or even worse formal conversations. As well as autism he is also dyslexic. He has to really think what words to use as he gets similar sounding ones mixed up. He therefore pauses while he constructs a sentence in his head and people then talk over him if he’s not quick enough. Imagine that everytime you speak to someone formally this happens ie colleagues, shop assistants, DWP etc., and how exhausting it must be, and it’s why he’s frequently classed as quiet or introverted. All of this is invisible to someone who doesn’t know him. That’s just one of the ways his disabilities impact him. There are many more, but he’s completed an electrical apprenticeship, works full time and passed his driving test. This is why I consider him high functioning

Okay thank you. We were never told that and it’s been prescribed by two different psychiatrists in CAMHS as well as by the GP 🤔 Must enquire, thanks.

This makes no sense

How is ‘impacted to a lesser degree’ not the exact same thing as ‘mildly affected’??

No one is saying anyone was incorrectly diagnosed. You could have correctly diagnosed autism and it could affect your life and functioning to a lesser degree than for someone else with the same diagnosis leading to the conclusion that it is ‘milder’

People obviously get upset and feel invalidated by the use of the word mild because to them their struggles don’t feel that way but in comparison to some other people it could still be true.

I do think that people apply this same reasoning to other conditions too without the same degree of outcry. Yes you can have a mild version of cancer. If you have CLL or low grade prostate cancer then you still have cancer but it’s not going to affect your life very much, you’ll live for many years and probably die of something else and could reasonably be described as mild. Most people with those diagnoses would not be trying to suggest that the same degree of care and accommodation was needed for them as for someone with a stage 4 metastatic cancer.

I'm afraid I'm even more lost. What you're saying doesn't seem to have anything or much to do with what I posted and the point. You're proposing something else entirely from the current diagnostic guidelines of autism.

In some way, it feels like we're saying the same thing: Autism can occur separately from other conditions. Then it seems you moved so far away and started a whole new conversation: Autism is a symptom of Down syndrome. I'm afraid I'm still confused as to the point you're making or if your post is suited to an entirely new thread.

Well, I can see that and it's sort of in line with what I said and the poster quoted, but I feel the point moved so far away from my initial post I have no idea what it really is.

I agree that someone can have traits of autism and LD, for example, and that could mean they have a different condition entirely.

Hence, my point was that someone can have autism as well as LD, and Autism is not automatically LD. I'm not quite sure if I'm missing another point, if we're agreeing or disagreeing.

Mine can't sleep without it. I agree with the other poster about sanity. It's been a life saver.

Like you, we were also never told to take breaks until she started having problems where it seemed it wasn't working anymore. That was when they suggested taking breaks. But we're back to everyday and so far it's still working. I hope it continues because the day she misses, it's a nightmare.

I don't know if it changes things that he was only 6 when he started it.

I don’t know. Mine was a bit older but still a child.

I’m not PP but I thnk you’ve misunderstood her.

To try and explain it from my own perspective…DC has asd, adhd, dyspraxia, dyslexia and ocd.

I don’t think of these as separate really. They are all the products of one brain and the distinctions between them have more to do with the different specialisations of medical professionals than anything else.

It’s not the same as, say, someone being short-sighted and also having asthma. They are unrelated.
But all the conditions DC has aren’t really separate at all. So that’s the opposite of what you’re saying, I think?