... to share this explanation of the Autism spectrum

[KihoBebiluPute]

This isn't a thread-about-a-thread but I wrote a version of the below in response to another thread that then got deleted before I could post it. I think it's useful information so thought I would start a new thread that isn't about one particular person but just general info.

Posting in AIBU because the original thread was here though.

The Autism spectrum isn't a line from "mild" to "severe" - it's like there's a colour wheel, and each person's symptoms are like a different cut-out shape across different sections of this wheel, so no two people with autism have exactly the same issues to contend with. There isn't a "mild" end of the spectrum which is almost the same as being a neurotypical person - NT people are not even on the same colour wheel at all. Terms like "mild" and "severe" are really unhelpful because they tend to refer to how much the issue is perceived by a neurotypical person. Someone can have a particular issue quite severely in terms of how much stress and difficulty it causes them, but may mask the issue. Obviously some people have much more significant challenges than others and may have additional conditions as well as the ASD, but people who are able to function to some extent in society don't have a less intense type of the condition, they are just affected in a different way.

This is really helpful, thank you.

But it would be helpful for most of the general population to have a non offensive way to distinguish between (for example) a completely non verbal/no communication at all individual who is not toilet trained, attends a specialist residential educational setting etc, from a verbal, relatively independent individual able to cope in a mainstream setting.

While there's a range of areas in which a person on ASD spectrum may be more or less severely impacted, the reality is some individuals will be severely impaired in them all, and I think that's what many people take "severe" to mean.

Accusing so-called high functioning people of diverting funding definitely does betray a lack of sympathy.

Level 1 2 3.

@covidaintacrime

Nice thread, OP. Good to spread more knowledge about autism, especially the harm of "functioning" labels.

This is what I disagreed with. That “functioning” labels are harmful.

I can't stand these threads and they always upset me. I'll have to hide this one, just like I hide the other autism threads. We can't talk about our experiences without whataboutery. It is what it is. There is no way of dealing with it.

Thank you to those who have listened.

@Coronawireless

There's a big difference between 'I speak for everyone else', and 'sorry, but you don't speak for me'.

It happens both ways in practically every mumsnet thread about Autism.

Something that occurs regularly here, is someone will start a thread describing what they interpret to be an 'autistic' behaviour, or the behaviour of an individual that they suspect might be undiagnosed. There's a cacophony of indignant responses along the lines of 'how dare you, we're not all the same/none of these things are typical in autism/that's not an autistic person, they're just an arsehole'. Meanwhile, I'm looking at the OP and recognising that they've described me, with my diagnosis, to a tee.

People are perfectly entitled to own their own diagnosis, to describe it as they see fit, to describe themselves as they see fit, including taking ownership of and embracing terms other people might find offensive, and/or disagree with other people's interpretations and views. There's no 'right' or 'wrong', and it's not dogmatic to express a view on what you personally feel or believe about your own diagnosis and how it's often portrayed or described by others.

Frankly, I think it's far more important to emphasise that people with autism are every bit as diverse and unique as NT people, than it is to argue over labels and terms, but it's still perfectly ok to have a debate about labels and terms and discuss why you might find them objectionable, inappropriate, unhelpful, necessary, or unnecessary. I don't think any of that amounts to anyone attempting to 'speak for everyone else'.

If other people find that the term that best describes for their situation is 'High/Low Functioning', then great, continue to use it by all means. I won't, because it's insufficient to serve any worthwhile purpose for me on a personal level, but I can still understand what someone might mean when they use the term. Likewise, I won't accept being forced to use those terms about myself, and I happily take ownership of other terms, many of which are widely regarded as offensive, because I'm applying them situationally to myself and in close company that I know understands my humour and my intent behind their use.

@pleasefeedthecat

I guess somebody with high care needs gets a roof over their head and food. This is potentially more than my two dcs will get. These are the type of people who kill themselves. Extreme? Maybe, but it happens and this is what I think about at 4am every morning.

You sound like you would prefer your children to have higher care needs than they do in order to access more care provision.

Thank you for contributing, @pleasefeedthecat, best of luck to you. x

High and low functioning are of no help at all. My son has just been diagnosed with autism and pda traits. Trying to learn as much as I can. My family have said we are all a bit autistic. And we are all a bit ocd. I have ocd. I do find there comments annoying , insensitive, ignorant and it lessens the struggles of people with these challenges. It's almost like what ever I say , non of it matters because everybody's a bit like this anyway.

@pleasefeedthecat

I can't stand these threads and they always upset me. I'll have to hide this one, just like I hide the other autism threads. We can't talk about our experiences without whataboutery. It is what it is. There is no way of dealing with it.

Thank you to those who have listened.

Apologies if I caused offence. Your life doesn’t sound easy. As a pp said, it would be good if a way could be found to discuss needs without offence.

I dont think there is a line that runs from neurotypical to severe autism and that 'everyones on the spectrum' and i find the spider diagram useful in understanding how different people with autism have different presentations. I also helps to find some common ground between quite different presentations of the same thing otherwise what does a non verbal incontinent adult have in common with a university professor with the same diagnosis

But i do think that within those diagnosed with autism some are more severely affected in more areas than others and its useful to be able to describe that it someway quickly.
It gets so confusing with learning difficukties, anxiety, adhd, other disorders overlapping too.

@Emeraldshamrock

Good god I searched the site you took that from, you should probably have a read

I don't know if you are in America, but if you are, your post is irrelevant and if you are not, even more so.

Thanks OP, really useful resource.

I sometimes have to step away from MN because their is bloody awful disabilism on here sometimes, but there is also a support network on here and it’s good to feel like someone understands.

@pleasefeedthecat and @covidaintacrime I just wanted to say thank you for your posts, it's posts like yours that raise awareness, and that hopefully in time will result in better provisioning for everyone on the spectrum. We're not in a race/ fight to the bottom, we all need better support, provision shouldn't be made contingent on someone else receiving less.

You sound like you would prefer your children to have higher care needs than they do in order to access more care provision.

It sounds like she'd prefer her children to have support appropriate to their needs.

Thank you, @Orf1abc I genuinely really appreciate that
Feels like an upwards battle quite a lot of the time, but we're still all here persevering!

This 'colour wheel' model might be preferable, but it's not the original meaning of 'autism spectrum'.

What Do We Mean by the Autism “Spectrum"?
There are several meanings of the term “spectrum" in relation to autism. The differences are subtle but nontrivial. DSM-5 does not tease these apart, but in relation to future research into the “autism spectrum," it is important to be clear to which meaning the term “spectrum" refers.

“Spectrum" can refer to the dimensional nature of the cardinal features of autism within the clinical population (i.e., differences in the severity and presentation of symptoms among those with a diagnosis of ASD). This was suggested in the 1970s, before autism appeared in DSM-III, when Lorna Wing highlighted the diversity among the cardinal behavioral domains within autism [20].

“Spectrum" can also refer to the continuity between the general population and the clinical population. This view of the spectrum requires the concept of “autistic traits" (sometimes referred to as “autistic-like traits") that run right through the whole population. Autistic traits can refer to the individual features that together comprise the quantitative variability in the cardinal behavioral domains defined by DSM/ICD criteria. Studies using questionnaire measures of autistic traits (e.g., the Quantitative Checklist for Autism in Toddlers [Q-CHAT] [21], the Childhood Autism Spectrum Test [CAST] [22], and the Autism Spectrum Screening Questionnaire [ASSQ] [23]) show a continuous distribution of scores, supporting the concept of a spectrum extending into the general population. Underlying autistic traits are genetic susceptibilities that are common across the general population and at the extreme ends [24], and for clinically defined ASD [25]. “Autistic traits" can also refer to associated features not described in DSM/ICD criteria, exemplified by items within questionnaires such as the Social Responsiveness Scale (SRS) [26] (e.g., “Becomes upset in a situation with lots of things going on") or the Autism Spectrum Quotient (AQ) [27] (e.g., “I tend to notice details that others do not"). These composite measures of autistic traits (including both cardinal and associated features) are also continuously (and normally) distributed, and have been used to characterize the “broader autism phenotype" (BAP) [28],[29]. These traits also show shared genetic association with clinically defined ASD [30].
www.ncbi.nlm.nih.gov/pmc/articles/PMC3635864/

@Coronawireless I’m sorry if you have suffered.

This is straight from the Priti Patel book of empathy. When someone describes their difficulties, you don't cast doubt on their experience by making it conditional (if you have suffered). I'm sure it wasn't intentional.

You sound like you would prefer your children to have higher care needs than they do in order to access more care provision

What I took from that, potentially offensive as it might be, is that being cognitively impaired to the point whereby an individual would be incapable of experiencing depression or suicidal ideation might be less of a worry to their parent.

@RockinDobbin

I don't understand why severe learning difficulties gets removed from this autism model, but severe anxiety to situations is included/

I do feel this model is reductive to those I would describe as severely autistic.

And I wouldn't describe either of my 2 as severely autistic.

Because severe learning difficulties isn't part of autism. It's a comorbid condition; a number of children who have severe learning difficulties also have autism, and their autism is impacted by their learning needs but the learning needs aren't "because of" the autism. They impact each other but you could easily have one without the other.

Whereas for an autistic person their anxiety is because of the autism: because of their difficulties with communication, or interaction, or their sensory needs or need for predictability, each of which is a core diagnostic part of autism, and each of which make anxiety much more likely.

we all need better support, provision shouldn't be made contingent on someone else receiving less

This is a noble sentiment and could be applied to many things in life (eg benefits, the NHS) but resource just isnt finite. Which means we always have to prioritise on some level.

@RosesforMama

Precisely why I've personally never been comfortable with the fact that there's nowhere near enough done to differentiate between autism and learning difficulties.

People invariably say to me 'but you don't come across as autistic', when what they actually mean is 'but you don't present with any obvious learning difficulties'.

It really enrages me, because people assume that the two go hand-in-hand, to the point whereby the presence of autism is defined by the presence of learning difficulties. It's tiresome having to explain it over and over and over.

This is a really interesting thread for me as I'm awaiting an assessment. I'm in my 50s, have always struggled with social skills, sensory issues, anxiety, obsessive interests, clumsiness among other things. I had no idea what autism was for most of my life, and it was like a lightbulb moment, making sense of all the difficulties I've had. Some pps seem to suggest autism is 'milder' if someone can get to middle age without diagnosis, but I think I'm not unusual in having a history of MH issues, breakdowns, job problems and lots of other difficulties, and constantly wondering why on earth I am like this. I am pretty sure I am autistic, but if I get an official diagnosis, it will be a huge relief just to be able to explain and understand myself at long last.

Someone sent me this similar article a few weeks ago and it made perfect sense to me. Pretty much everyone I've mentioned autism to says "oh well its really mild isn't it, and we're all on the spectrum", and I find it really hard to explain that, yes, I'm quite intelligent, but sometimes I can't leave the house, sometimes I can't understand what people are saying to me, sometimes I have panic attacks about sensory overload, etc. The colour wheel idea really helps explain the different areas and levels of difficulty.

I do appreciate the concerns of people whose children would previously have been described as severe or low functioning. But even those words are vague in terms of explaining specific needs e.g. I have a friend whose son was diagnosed as 'high functioning' and has a job, but needs to live in sheltered accommodation with some level of care. Surely it's clearer to have additional descriptors to explain needs like physical care or learning difficulties?

People invariably say to me 'but you don't come across as autistic', when what they actually mean is 'but you don't present with any obvious learning difficulties'.

Yes to this. It goes back to me earlier post where people say to me 'but you are ok' - well I may present to you right now as 'ok' but I will probably stay in bed for 2 days as a result of the absolute mental stress involved in looking 'ok'

People definitely equate learning difficulties to severe autism. I don't have learning difficulties so I must be 'ok'

But you don't have to have anxiety to have an autism diagnosis?

my eldest is 15 he is autistic, has anxiety and depression as a separate diagnosis which he is medicated for. he is cognitively able but likely to leave school without any qualifications as he is disengaged. I would not consider him, nor does he consider himself, severely autistic. in fact he says the autism diagnosis means nothing to him

The stuff that's been said on this thread about NT carers dominating the narrative and maybe she isn't bothered about her autism (the severely autistic woman) smacks of ableism.