... 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.

I think the idea MoodyMarshall is that the Level system isn't as presumptuous as "high" or "low" functioning. It's more a statement of fact rather than an expectation of capability, as it doesn't include the outsider perspective on how well someone on the spectrum functions.

DS was diagnosed just after they dropped Aspergers as a term, I was told he had ASD and I asked if it would previously been Aspergers and was told no, it would have been classic autism. DS is now 18 and going to university in September. DS also has only 1 friend, also autistic, spends all his time in his room gaming/streaming and still isn't trusted to be left home alone because he wouldn't notice the house burning down around him. I also have to lock my doors at night to prevent him eating the contents of my kitchen. What label would he have? High functioning because he is intelligent or low functioning because he can't really be left alone safely?

@covidaintacrime Yes, that makes sense.

Do you mean my model? If so, I'm just providing examples and not a comprehensive list.

No, its something I have observed a lot of with the there's no severe/mild model. When the non verbal SLD Autistic presentation is mentioned those bits are dismissed as not to do with autism. but anxiety is not dismissed

No, its something I have observed a lot of with the there's no severe/mild model. When the non verbal SLD Autistic presentation is mentioned those bits are dismissed as not to do with autism. but anxiety is not dismissed

I'm not sure what the percentage of autistic people have learning disabilities, but according to this one in five autistic people has an anxiety disorder. (www.spectrumnews.org/news/one-in-five-autistic-adults-may-have-an-anxiety-disorder/#:~:text=They%20found%20that%2020%20percent,of%20controls%20for%20each%20condition.)

Not necessarily a justification, just a theory.

@covidaintacrime, I think you've both missed my point and demonstrated it. My son won't be able to do what you have just done.

@charliespie I understand. I think we're both advocating for our children. It is difficult. One thing in society that has concerned me for a while Is the increasing voice of autism advocates who by their nature can't speak for my child and those like him but because of the dx are taken are taken as a voice of authority. I know having a child or children with send brings a set of fights others arent aware of regardless of dx, we have that in common.
I don't want to dilute your childs needs or diagnosis I just want to protect mine it is a very difficult situation.

I think you've both missed my point and demonstrated it. My son won't be able to do what you have just done.

That may be true. Still don't think you get to tell me how disabled I am though, if I'm being honest.

my eldest was dx with Autism when he was 3, he's now 15 and medicated for anxiety and depression. I'm very aware, I do just feel uncomfortable at the chopping off of SLD as not relating to Autism. It doesn't mean I'm right.

I strongly disagree with the idea that you shouldn't have high or low functioning ASD, aspergers or any other differentiation. My lo was diagnosed with aspergers, he is able to cope with most things but would be seen as a bit of a loner. To not be able to differentiate his difficulties from someone who is non verbal, can't cope with any change or transition, self harms due to anxiety, has learning difficulties etc is not doing anyone any favours IMO. To me it takes away from the distress and difficulty of a child that really, really, struggles with day to day living and the huge amount of hard work their parents have to put in to enable them to cope. It also takes away from the more able child as there is nothing to give any indication that they may be more able to manage many situations and cope with and overcome many of their difficulties.

My assessor felt that there was a linear element to ASD that went from NT to severe ASD. I'm not saying he was correct or incorrect just that it is a matter of opinion.

Completely agree with AgntOso. Words have meanings. Having the descriptors "low functioning", "severe" or "profound" in front of the diagnosis quickly communicates, to whomever necessary, very important information. Diagrams and charts have their place, but simple verbal or written communication cannot be eliminated.

My assessor felt that there was a linear element to ASD that went from NT to severe ASD. I'm not saying he was correct or incorrect just that it is a matter of opinion.

That's actually shocking. How on earth could they assess properly with such little understanding?

@AgntOso

I actually find it quite difficult that people who arent very disabled by autism want to change my sons diagnosis. He is referred to as having severe autism because he performs low in every area. I think it's quite perverse that people who are able to converse, use social media, care for themselves, live alone if they choose, have jobs, have families.... would want to be considered the same as my child who requires 24 hour care. Why would anyone want that?!

Professionals are now starting to use 'profound autism' to replace severe so not to offend autism self advocates.

Totally, totally agree! Some people with autism who have a job, marriage etc seem to think their experience of autism makes them an expert on all people with autism. Well, good for you, but you should in no way, shape or form compare yourself to those who struggle to live independently, nor should you attempt to speak for them or their families.

The carers of the 30 year old autistic who is incontinent and non verbal would judge her autism to be 'severe', but that would be their experience of it and it may not bother her in the slightest.

On the other hand, the verbal, highly intelligent and meticulously clean young person who has a first class degree in History from a top university, but is plagued with mental health difficulties, is unable to live by themselves and has little social contact and no prospect of a job is undoubtedly highly disadvantaged by their autism. Autistic people like this have a suicide rate which is nine times higher than the rest of the population. Only 15% of autistic people are in full time employment. Mental health problems are also high.

Do NT people take these things into account when they are deciding which label we should be awarded?

Functional labels are disabelist and NT carers of 'low functioning' autistic people have always dominated the narrative.

You put what I was trying (and failing) to say much more clearly, pleasefeedthecat. Hear hear.

The reason I don't like 'High/Low functioning, and a 'linear' view of ASD, is purely because I don't personally experience my autism in a linear fashion.

On the days where I'm in the pub with my friends, having a whale of a time, cracking jokes, picking up on the others' humour, 'getting' everything, enjoying myself, other people are enjoying my company, am I 'High functioning'? Of course, and I'm grateful for small mercies that I'm able to do these things in small doses, and able to experience things in a way that some other people with an autism diagnosis never will.

What about the times where I'm so dysfunctional that I can't get dressed without having a total meltdown? I don't eat for a week because I haven't been able to shop and have no food? What about the times I can't wash because the normally simple task of operating the power shower is completely beyond me and I know I'll destroy it, literally smash it into small pieces, if I try to operate it at all? What about the times I spend 48-72 hours uninterrupted obsessively browsing the internet oblivious to everything that is going on around me? Am I still 'high functioning' at these times?

Agree with @covidaintacrime

Your disability is not defined or quantified by how 'disabled' or functional any other individual is. Autism doesn't work like that. This is kinda the whole point.

@MoodyMarshall in my area they don't diagnose any sort of level at all, it's just ASD. They haven't removed anyone's older diagnosis but whether you would guess at my child being/having a 1 or a 3, he's neither, he just has ASD just like everyone else who've been diagnosed in the last few years in my area. (Actually they used the word Condition rather than Disorder the entire way through the process.)

@AgntOso I think you make a lot of good points and I have a lot of empathy for your point of view. I don't know what the answer is. I think the problem is there is so little resource for help for anyone and even diagnosis just gives you the bare bones and nothing of much use. We're all fighting over scraps.

@pleasefeedthecat

The carers of the 30 year old autistic who is incontinent and non verbal would judge her autism to be 'severe', but that would be their experience of it and it may not bother her in the slightest.

On the other hand, the verbal, highly intelligent and meticulously clean young person who has a first class degree in History from a top university, but is plagued with mental health difficulties, is unable to live by themselves and has little social contact and no prospect of a job is undoubtedly highly disadvantaged by their autism. Autistic people like this have a suicide rate which is nine times higher than the rest of the population. Only 15% of autistic people are in full time employment. Mental health problems are also high.

Do NT people take these things into account when they are deciding which label we should be awarded?

Functional labels are disabelist and NT carers of 'low functioning' autistic people have always dominated the narrative.

For starters I referred to the person as severely autistic, not low functioning.

So the cognitively able autistic gets to decided that the learning disabled autistic is not bothered. But that's o.k. because the carers of severely autistic people who need around the clock care have been dominating the narrative. Because they are not the ones who do public speaking about their diagnosis and autism

I can totally see why peopje would object to High Functioning and low functioning as labels as they sound like a ranking system but not using those labels also has issues. My son is genuinely high functioning these days, he seems to have grown out of a lot of his sensory issues that caused him so much difficulty, when autism alone is used people seem to have low expectations of him. As he grew older i always felt that having to describe him as having autism then add on a lengthy description of his strengths and weaknesses was a bit of an invasion of his privacy, if I just said HFASD or Aspergers people's expectations and what he was capable of more or less matched up without any intrusive discussions taking place. I can see how this would not work for everybody and also feel that it should be up to the individual to choose how to describe themselves. Was low functioning ever used outside of clinical reports anyway?
We have our own family terms that are amusing (to us anyway) that we sometimes use on the very rare occasion when it has to be mentioned at all. (DS2 is 20 and is at uni now, i dont think he tells people about his DX).

@pleasefeedthecat

Yes. Yes x99999

The core of this problem is that a lot of people with autism (like so many other mental health issues) need ongoing and tailored support. A diagnosis of ‘high’functioning is decried because it seems to be used an excuse to hide this fact.
Similarly someone who is able to hold down a job etc is definitely in a better position than a non-verbal autistic who will need help with basic daily functions.
We do need criteria to enable people to ask for adjustments etc but perhaps this should be based on individual symptoms or at least a gradation that is not just limited to high or low functioning.

Still, comparing the two examples above, it would be highly unlikely that a 30 year old, non-verbal, incontinent adult would be UNBOTHERED (in the slightest!) by her disabilities. I find that statement shocking, and actually slightly dehumanizing.

The second example clearly demonstrates that "high functioning" people on the spectrum are in need of a lot of support and still have debilitating symptoms. This is not being debated. We still need words to describe the differences between these two people.

I didn't say that it didn't bother her, I said it may not bother her.

@pleasefeedthecat

The carers of the 30 year old autistic who is incontinent and non verbal would judge her autism to be 'severe', but that would be their experience of it and it may not bother her in the slightest.

On the other hand, the verbal, highly intelligent and meticulously clean young person who has a first class degree in History from a top university, but is plagued with mental health difficulties, is unable to live by themselves and has little social contact and no prospect of a job is undoubtedly highly disadvantaged by their autism. Autistic people like this have a suicide rate which is nine times higher than the rest of the population. Only 15% of autistic people are in full time employment. Mental health problems are also high.

Do NT people take these things into account when they are deciding which label we should be awarded?

Functional labels are disabelist and NT carers of 'low functioning' autistic people have always dominated the narrative.

You sound as if you are being pretty disableist yourself against the 30 year old autistic woman given in the example.

I have not met a human who would not be bothered by that disability.

Ofgs, it was just an example 🙄