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.

Totally. Sums it up.

Thank you.

Well, they were combined precisely because many clinicians couldn't draw a clear line between the two. That's pretty much irrefutable, because, along with greater understanding of the condition, it's the reasoning given for the dissolution of the distinction.

The question therefore remains that if we want to separate ASD into multiple conditions once more, there needs to be a clear line between variants that remains consistent across environments and throughout a long period of time. Clinicians and researchers have continually failed to provide such a delineation, which is why no further separation has yet been introduced. They all come up against the same problem: the sheer amount of edge cases.

So... my husband, who was diagnosed at the young age of 4. He is no longer severely affected by autism (I guess he has also learned to mask)... he was cured of autism? Because he lives a happy life, holds down a job he loves, has a family, etc (so not severely affected, though he once was). I don't think that's how it works...
I also think that would really offend him if I told him someone believed that! I also work with other autistic people (I guess we have a job that appeals to those on the spectrum and that they can do well) and I think that notion would offend them all.

I'm sure you struggle, but I really don't think you have "the same" struggles as someone with autism who has never learnt how to use a toilet, has never gone to a mainstream school, has never had friends, is never able to communicate, has never lived independently, needs a carer 24/7. The very fact that you're here typing on Mumsnet shows that your experiences are very different. I find it weird that you're claiming otherwise.

It isn't surprising people don't like being defined by how others see them as lacking, whether it's mildly or profound.

Describing other people's disability as mild has a long history of being used to avoid giving or removing support and consideration. This can put people back up and bring concerns, particularly as that can and does lead to the disability getting worse without notice. It can put people's lives at risk.

Describing other people's disabilities as highly or profound has a sickening history of dehumanisation by those in power, which makes some wary to use that kind of language. It can put people's lives at risk.

I think just as the diagnostic criteria and naming for autism as changed over time, it will continue to change. I do think there could be benefits to clearer language, there have been a few frameworks put out there and some research attempts; however any framework we use will have limits - they largely rely on a deficit model to define, which amplifies problems and ignores how people change over time or in different environments. Moving beyond that, while a dream, is not something I see as realistic. Part of all disability work is discussing disability and people far beyond just the diagnostic criteria.

And then there is is the issue that once diagnosed as meeting the criteria for ASD, it can be difficult to get professionals on side or just not a priority with limited energy and time to get past that difficulty for other diagnoses or other non-medical causes of issues so everything deficit-wise can get put under that diagnosis. Autism is not unique in this, but it's a very visible example of it, to the point that there has been discussions around ASD masking other conditions that it is co-morbid with. I mean, until recently, people couldn't be diagnosed with both autism and ADHD, and some professionals have come out with concerns about the lack of resources and barriers to a FASD assessment even with data showing FASD to be as to twice as common as ASD, and that the overlap in symptoms and ASD being highly co-morbid with FASD may mean some are not getting the full care or understanding of themselves needed as ASD is more socially acceptable and 'easier' to diagnose as there are far fewer professionals available to assess and there is the need for parental history to confirm with FASD.

Their struggles are trashed because they don’t fit a picture of what others think severe autism should look like. It’s frankly disgusting. No other disability gets this.

I agree this rhetoric is very visible when it comes autism, or neurodiversity in general, especially in how it is discussed online, but people with other disabilities also deal with the issue that if it doesn't look like what other people think it should, then it gets trashed. Disability in general leads to that issue where people's struggles are trashed if we don't fit what others think disability looks like alongside being trashed for not fitting what others' think 'normal' looks like.

Because Hans Asperger was a Nazi who sent autistic children to camps to be euthanised.

It was mostly to do with the name wasn't it? He was a pretty controversial and unpleasant person, even if his "diagnosis" actually made sense.

I personally think we should bring back Aspergers (under a different name if necessary) as a subtype of autism. So someone could have an autism diagnosis but have Aspergers subtype.

He was, but that doesn't mean we needed to get rid of the entire diagnosis of Aspergers. We could (and imo should) change the name and use it again, as it's a very valid diagnosis, despite its' origins.

It’s interesting that this poster you are quoting stated that my earlier post was offensive when I said that people diagnosed years ago just had to muddle through and learn to cope because we had no choice.
I’d argue her post that we can’t possibly have autism if we can cope with life is more offensive than anything else I’ve read on here. Maybe we ‘outgrew’ our autism? If that’s the case, perhaps her own children will outgrow theirs? I imagine she won’t
like me saying that very much.

"You're either pregnant or you're not" but we still talk about women being "heavily pregnant" and to my knowledge nobody gets offended at that! Accepting a binary division between X and not-X doesn't mean you can't then acknowledge degrees within X.

I am ND myself. I'm sick of being told I must regard myself as disadvantaged, when so many NT people have so much worse problems than I do.

And wish that the ND community would stop thinking that their complaints apply only to them, when there has been no complain on this thread that would not also apply to the zillion and one conditions that others, NT and ND are affected by without it being seen.

If you need people to understand the difficulties in your life that can't be seen, then you need to speak about them just like everyone else.

I assume a lot of people were uncomfortable/unahappy to have their condition associated with a man who got to decide which children were “uneducable “ and such a “burden” that they had to be institutionalised and killed.

This discussion reminds me of an article I read by someone who was studying autism/doing research.
He had been researching stimming behaviours.
He presented a paper at a conference about autism. Many of the delegates were autistic themsleves, they had come to the conference precisely because they wanted to interact with current research.
In his introduction, the professor presented 2 video clips of stimming behaviours.
One was of someone in a meeting who had a pen in his hand under the table and was twirling it constantly all through the meeting. Above the table he appeared calm and was able to engage in the meeting, but he was using the stim to self regulate.
The second clip was of a lad of about 10. He was non-verbal, non communicative. He was sitting on the floor banging his head repeatedly against the wall.

The reaction in the room took everyone by surprise. Many of the people present got angry, some walked out, there was a huge backlash. Why? Because the people with autistm who had come as delegates did not like being put in the same box as that non verbal lad banging his head. That is somehow made them look bad. That their reality was being denied when a more 'severe' reality was presented.

Yet the presenter was simply showing 2 stims. Both valid, and both used to self regulate.

My dd has autism. 2 of my nephews have autism. My SIL is almost certainly autistic, but undiagnosed. We suspect that my FIL and many of his sibling were autistic. My dh certainly has autistic traits, but probably not enough to actually be diagnosed.
All those people manage to hold down a job, and relationship, and parent kids. It isn't easy,my SIL has had many many struggles which she is now (since her own kids diagnoses) realising may be connected to autism. My own dd will need loads of support going off to uni, but she will be able to go.

Do I think their lives are severely effected by autism? yes
Do I think that it is the same as someone looking after a non-verbal child who head bangs against a wall and will never be able to live independently? No.

We need some way of describing these differences that doesn't undermine one group, or minimise the serious life-long and life changing impact on the carers of the other group.

That’s a crappy comparison. Someone with a stage 1 grade 1 breast cancer is quite different to someone with a stage 3 grade 3 breast cancer. They’ll have quite different treatment pathways and five year survival rates. Same goes for pancreatic cancer, if you have a stage 1 neoendocrine pancreatic cancer your survival rate is far higher than someone with stage 3 pancreatic cancer.
You might not describe it as ‘mild’, but there’s no reason not to be positive about a breast cancer that can be treated just with a lumpectomy, even while commiserating that it’s an unfortunate diagnosis and they’re feeling deeply anxious about it. The person with the stage 3 grade 3 diagnosis is looking at six months of hellish chemo treatment and radiotherapy on top of surgery because it’s far more severe, as well as the constant paranoia of recurrence for the rest of their life.

I didn't mean the exact name, sorry - I meant the diagnosis. I should have clarified.

Which is fair enough, but it's not a reason to get rid of the diagnosis as a whole, it should have just been re-named to something else.

Lots of "conditions" (for want of a better word) were discovered in unpleasant ways or by unpleasant people - it doesn't mean the conditions themselves are no longer valid.

This diagram doesn't refute the idea that autism can be mild or severe though does it? Just that there is nuance within that.

I think people do ok at explaining it with whatever words they choose. I'm autistic and so is my child, I don't personally get offended by people saying mildly autistic. If someone says mildly autistic you know what they mean. It's not what I'd say personally but i feel like those with profound autism and their carers have bigger problems than caring about how something is worded- it's only ever the low care needs autistic people who go on about this- I'd say that if that is within your realm of things to care about you're fairly fortunate.
those with high care needs are often completely left out of the conversation regarding autism, whilst their carers are bashed for struggling. Meanwhile those with low support needs have decided they can speak for every autistic person despite having wildly different experiences.

Absolutely. Medical progress in the past was often driven by terrible people, with incredibly cruel, inhumane, or unethical methods, but as distasteful as it may be, you shouldn't throw the baby out with the bathwater.

It does when the threshold is severe impact on life. There is nothing mild about it.

You can regard yourself any way you like, what you can’t do is tell me how to regard the autism my children have.

"mild" is the way others see it

Exactly the same as for autism. You can have someone autistic but with profound learning disabilities who has no awareness of their disabilities. You can have someone with phenomenal intelligence but severe deficits leading to poor mental health & suicide (autistic women often fall into this group)

For comparison breast cancer overall results in lower levels of disability & loss of life expectancy than autism.

I've had severe difficulties related to autism & mental health & breast cancer.

Breast cancer was by far the mildest & easiest to cope with & easiest to get treatment for with the shortest waiting time. That doesn't mean it's the same for everyone. That's the point I'm making.

Totally with you, I think it's a real shame we longer use Aspergers - I think it would really help "solve" a lot of these issues around so-called mild autism.

The threshold for an ASD diagnosis isn’t “a severe impact on life”.