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.

Sorry @shinygolden I was getting you mixed up with another poster, Thewordwomanistaken I think, so my last reply probably doesn't make complete sense. I think I need to go to bed, my brain's not working properly at this time of night!

Isn’t that the opposite of dyslexia? I’d assume she’d struggle with word fluency but have strengths in the areas you say she struggles with.

OT perhaps, but this insistance on high coherence/no difference within any group and minimising internal differences (in this case it's 'we're all the same/there is no mild/severe autism') is usually correlated with high in group/out group dynamic - highlighting and maximising any external differences between those who are and who are not in the group. In this case - binary view of autism.

We’ve moved schools twice. First two definitely weren’t meeting his needs, this one is very new and they are doing lots to try and help.

I certainly don't think most people are arguing that everyone with autism is the same / there's no difference.

I think they are saying that any autistic person at any cognitive or verbal level can be severely affected by a context that doesn't understand them or their needs, or which places expectations upon them that they cannot meet due to their neurology and then blames them for that.

So the "severity" of anyone autistic's situation is a function of how well matched their neurology and environment are. It's perfectly possible for a preverbal autistic person with intellectual challenges to be well supported and happy. It's perfectly possible for a highly verbal intellectually able person to be incredibly distressed and even traumatized in their environment. Function is not simply inherent but contextual.

So the "severity" of anyone autistic's situation is a function of how well matched their neurology and environment are.

It can help a lot to be in the right environment but the environment isn’t everything.

"So the "severity" of anyone autistic's situation is a function of how well matched their neurology and environment are"
I don't think that's true though. For the preverbal person you mentioned, being well supported and happy improves their quality of life, which is really important, but it doesn't enable them to care for themselves, cook, or work; it doesn't remove their disability. They remain very severely disabled and require a high level of care regardless of their happiness.
A highly verbal, intellectually able autistic person can often do those kinds of things if their environment is right. They likely have the ability to function well in many ways if barriers are removed, whereas the first person does not, no matter the support provided. What you are talking about sounds like the social model of disability, which has huge limitations, particularly when applied to severely disabled people. It's only half the picture.

What you are talking about sounds like the social model of disability, which has huge limitations, particularly when applied to severely disabled people. It's only half the picture.

It also doesn’t work for at least some of those autistic people who have severe mental health difficulties…the struggle can come predominantly from within.

Yes. I think the social model only really works if it’s used alongside the medical model, not instead of it.

'So the "severity" of anyone autistic's situation is a function of how well matched their neurology and environment'

Severity is related to symptom level ('autistic situation') and impact - both on the person as well as the environment. If someone requires multiple, long term accomodations as in your example, it suggest high severity.

Mental health is not autism. Many people with autism have poor mental health but they are different things. It is perfectly possible for someone in a wheelchair to be very happy or for someone with no physical disability to struggle with their mental health. The fact someone in a wheelchair is happy doesn’t mean they are not disabled.

Mental health is not autism. Many people with autism have poor mental health but they are different things.

For at least some people, autism and mental health conditions are certainly not separate. They may be diagnosed as such but that’s just an artefact, the way the medical system has been set up. My DC doesn’t have asd separate from adhd separate from dyslexia separate from ocd. It’s all one brain and the conditions are inextricably intertwined, different facets of the same mind. Or you can think of it like this…DC’s OCD is a direct result of the ‘black and white’ thinking associated with autism.

This isn’t just my own opinion btw. This is how it has been explained to him (repeatedly) by psychologists and psychiatrists…not to think of them as separate conditions at all.

It depends whether you think "severity" means "how far from typically developing one is" or "how impacted one is by one's differences".

The impact of autism can be enormous and just as significant in an intellectually able, verbal person.

I really disagree with whomever said that mental health and autism are different as if any cooccurrence is coincidental. The fact is that the differences at the core of autism - social communication, flexibility of thinking, sensory - greatly increase the likelihood of mental ill health precisely because one is more likely to be misunderstood, isolated, lonely, overwhelmed, sensitive, and struggle with perspective-taking, as well as unemployed.

I'm surprised by this. How then would therapy work? My autistic daughter had therapy for OCD and it was very successful because it was based on the assumption that we can't cure ASD but we can cure OCD. And they did via a combination of response prevention therapy, CBT and SSRIs. I'd agree that autistic people are more prone to OCD, due to rigid thinking and hyperfocus, but it's not the same. As a general rule, if a routine is positive, sustainable and reduces anxiety it's ASD, if it is destructive/increases anxiety and dependence it's OCD.

@AutismProf Your username intrigued me, if you don't mind me asking are you someone who studies or assesses autism? Or are you autistic yourself? I just wondered what perspective you were coming from? 🙂

I am not diagnosed with anything myself, but yes I work in assessment and support of autistic children and young people, (for 20 years) and have an autistic parent, siblings and child.

I think things may be moving away from viewing these conditions as co-occuring and separate. At least some professionals think they’re all part of the same spectrum now.
For example
https://pmc.ncbi.nlm.nih.gov/articles/PMC10813392/
“Our findings support the association between OCD and autism traits in the adult population. They also describe the high prevalence of autism traits in adults with OCD, as well as the strong correlation between many essential characteristics of the two conditions and the predictive function of autism traits in relation to more severe OCD symptoms. From a broader viewpoint, our findings may support the rising hypothesis of a possible shared neurodevelopmental basis for some psychiatric conditions, according to which different psychiatric illnesses, such as OCD in this case, may result from a neurodevelopmental alteration similar to the one associated with ASD, and might potentially be seen as a particular phenotype on the autistic spectrum.”

In DS’s conversations with professionals they encouraged him to think of these conditions as all being interrelated, connected, all products of the way a single brain is ‘wired’. Definitely not as separate conditions.

Stimming and autistic rituals as positive and OCD rituals as negative is how we first learned of them too and it’s a helpful way to think of them. However, interviews of autistic people with ocd indicate an overlap, where positive rituals can become ‘hijacked’ by ocd. So it seems positive and negative rituals don’t necessarily stay distinct in the mind.

When you say, “It depends whether you think severity means how far from typically developing one is, or how impacted one is by their differences. The impact of autism can be enormous and just as significant in an intellectually able, verbal person,” it comes across as pretty dismissive of what severely or profoundly autistic people and their families actually deal with. For people in that situation, they could have every possible support and accommodation, which would certainly improve their quality of life, yet they would still be very severely impacted in almost every part of daily life. Not being able to care for yourself and being reliant on others for every single part of your life, is being severely impacted, how could it not be?
Have you not seen that for yourself in your work with autistic people?
I agree with you that autistic people are “more likely to be misunderstood, isolated, lonely, overwhelmed, sensitive, and to struggle with perspective-taking, as well as being unemployed.” But all of that is amplified a hundredfold for someone who is severely autistic, non verbal, and often has an intellectual disability. They will find it incredibly difficult or impossible to make themselves understood, to express when they are frightened, overwhelmed, or confused. They will likely be unable to make friends or romantic connections, and they will almost certainly be unable to work, no matter how many accommodations are offered.
No matter how difficult they find social interaction, they cannot escape it because someone has to be with them constantly to care for them. They don’t have the option to arrange their life in a way that suits them, even if they had the best care in the world. Their lives are inevitably very hard, and there are ways to really improve their quality of life, but nothing that can prevent them from being profoundly disabled.
An able, verbal autistic person can in many cases, if they are well accommodated, find a life that suits them and where their differences are less disabling, or not disabling at all for some. Many will find work that suits them, date, live by themselves, have children, a social life. I did myself, as did many other people I know. But the severely autistic people I used to support could never do that. Severe autism involves huge challenges over and above those faced by people who have the privilege of being intellectually able and verbal.
And of course there are many people somewhere in between the two extremes.

Not at all, I don't dispute the points you make at all. I have seen families having to find ways to barricade the stair landing to keep their children safe, I've seen fecal smearing and gouged walls and people who need 3:1 care.

I just don't think that it follows that if you don't present with very difficult to manage behaviours or intellectual disability that you therefore are "mildly" autistic. You are differently autistic.

To describe the horror of existence my DC went through for years when they just wanted to disappear (despite a very supportive family) as a mild autism is nonsensical.

I'm very sorry things have been so hard for your DC. 💐
You seem to be saying two things:
First, that people with what is often called mild autism, those who are intellectually able and verbal, can still often really struggle. Their condition does not feel at all mild to them or their families, so using that term feels invalidating.
Second, that people affected that way are often just as severely autistic as those who would traditionally be classified as having severe autism. Suggesting that they are not also feels invalidating, because you see them as differently affected, rather than less or more severely affected.
Regarding the first point, I can completely understand that, and the issue could be solved pretty easily by using different terms. Some are already in use, such as Level 1-3 autism, high functioning autism, or the former diagnosis of Asperger’s. Perhaps creating several new definitions across the spectrum would be more helpful, and it looks like things may be heading that way with recent research. For a number of reasons splitting the spectrum would likely be more helpful.
With the second point, I still completely disagree. Some people are more severely autistic than others, just as some people are more severely affected by other conditions than others. When you try to obfuscate that, it seems to benefit people with more high functioning autism at the expense of people who are severely autistic and their families, who need much more intensive support than the former group.
Anyway, hopefully this will be solved in the near future by splitting autism into multiple conditions.

The second point - it becomes difficult to separate out where the interplay of learning disability and autism happen, what is purely autism and what is attributable to significant or profound learning differences as well as autism.

I don't like the term "high functioning" for the verbal cohort because it suggests a milder autistic presentation.

I would be fine with an alternative description that distinguished between those who are pre/non verbal, with or without significant learning disability, and those who don't have significant learning disabilities.

Even level 1,2 and 3 don't work because whilst 3 might be 3 always, 1 can become 2 or 3. It trivialises the enormous difficulty navigating life some autistic people who are able to use language and access academic learning. I don't want to trivialise the experience of the "level3" but not of the others.

@AutismProf You previously mentioned that you disagree with the idea that mental health issues and autism are completely separate or that their occurring together is just a coincidence. I think that logic applies just as much to learning or intellectual disabilities, which are often seen alongside autism. At the same time, there are people with severe autism who aren’t classified as having an intellectual disability but are still nonverbal and need the same 24 hour care.
It sounds like you won’t accept anything that suggests some people can be more severely affected than others because you find it invalidating. That’s not an unusual viewpoint. Many others seem to feel the same, as can be seen on this thread and in other spaces where autism is discussed. That's one of the reasons that families of severely autistic people feel unwelcome in a number of autism support groups.
What terms that you think people should be able to use to distinguish between different presentations of autism if they can’t talk about severity or functioning or levels 1-3? What about high, medium, low support needs?
When we’re discussing the people who’ll need 24 hour intensive support, who need to access welfare and care appropriate to that severity, whose families desperately need respite, and who’ll need full time residential care once their families can no longer care for them, what terms do you think people should be to use to distinguish those needs?
If their families and others advocating for them cannot say that they are more severely affected than someone else, then how can they advocate for all the additional resources and support and the funding that they need?

I think what the pp was saying is that you yourself believe with support your children will go onto higher education, get a job etc however there are some children with autism who will never be able to achieve this. They can't attend mainstream school, they won't get a job, they will never live alone/independently, they cannot do self care, they have meltdowns that are so severe that families are injured by their actions.
Without taking anything from your children's difficulties, even you must see that these are not at the same position, one of these children has profoundly less life chances than the other due to the extreme of their autism. To class them both simply as 'autism' is deeply upsetting and disregards.the level of difficulties some children suffer.

"You wont accept some people can be more severely affected than others because you find it invalidating" @LavendersBloom

Absolutely not. Of course some people's lives are more impacted. The point I am making is that a) this isn't always predictable at time of diagnosis and b) this isn't always static or intrinsic. Therefore functioning labels that are given at diagnosis are meaningless, particularly for verbal academically able children, some of whom go on to university, marriage, career and some of whom will spend years hiding away in a darkened bedroom completely traumatised by the social and sensory expectations of modern living. It's not always easy to tell who will be who when you are diagnosing a 7 year old (although actually having a fight anxiety response rather than a withdraw/freeze is often a good thing).

We used to have kanner autism for the one population and Asperger's syndrome for the other.

Fwiw my 'aspergers' kid with measured IQ at 96 percentile is unlikely to ever live independently. 24 hour care not necessary but their current PA suggests 4 visits daily if and when they move out. I do think without any external support my DC would eventually starve to death as they are unable to interact or advocate with agencies such as UC, pip etc.