... 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.

It's a complicated thing. I don't even think people stay on one colour or position in the wheel. My DS goes from being sensitive to certain noises for days, then suddenly not bothered. Not wanting ears touched to not minding, then back again.

This is how I experience things as well.

I don't consider myself to suffer anxiety, but I describe myself as sometimes having an 'autistic flare up', and the only way I can describe it is that I sometimes have periods where I feel far more dysfunctional and at odds with the world, and it manifests itself in what would commonly be described as symptoms akin to those in people with anxiety.

I'm perfectly accepting of the fact that this probably is co-morbid anxiety that goes hand-in-hand with my autism, I just don't describe it as such.

A couple of examples would be -

Ordinarily I'm fine in the majority of social situations, especially so with people I know well. I'm completely at ease eating in restaurants etc, though even when I'm 'well' I have a couple of foibles such as having to sit with by back to a wall, facing into the room etc. When I'm having a flare-up, I still attempt to 'do' restaurants as normal, but I'll be extremely ill at ease, can't sit still, am paranoid about other diners looking at me, can't make eye contact with my friends or partner, become extremely irritable, lose my usual easy-going demeanour, will bristle at someone assuming I just want my 'usual' drink etc, choose things from the menu I know I can't tolerate etc. It's a totally different experience.

Similarly, I get up in the morning, put on my socks, think nothing of it. If I'm 'unwell', the act of putting on a sock can cause a cataclysmic meltdown. It's me versus the sock. My foot suddenly becomes unreceptive to socks. I rage at how badly designed the human foot/ankle/leg is, before I know it I've blown a gasket and I cease to be able to function normally

Nothing is constant. For the most part I'm generally on an even keel, but I definitely subscribe to the view that autism 'flares up' and then recedes for some of us.

Sorry also to add - this isn't to dehumanise or separate a person from their autism! It's often a very intrinsic part of autistic people, I'm just showing what helped me imagine the spectrum as something other than "high functioning" to "low functioning"

This is really informative, thanks OP

@covidaintacrime

Thanks for the diagram, that's helpful.

Presumably, the further from the centre, the more pronounced/extreme that particular behaviour?

It certainly makes sense if I plot myself on there on that basis.

Very glad it's helpful @XDownwiththissortofthingX, can't always tell when I'm unintentionally making things more complicated

I guess you could perceive it that way, yes! But it changes frequently, and for example on Monday, Frank (random name) could look like Person B but on Tuesday could look like Person F in terms of the effects of autism on that particular day. "Flare ups" also effect this, not an autistic medical term but for me it means the autistic equivalent of getting triggered. Could be caused by loud noises, bright lights etc that affects the way you're coping / what blob you look like.

I'm sure there are some flaws in this way of thinking, just what I use!

FWIW, if you overlaid a slightly podgy figure of '8' on that graph, that would describe me.

Stretch it to the edges and make is stray into noise sensitivity when I'm not coping, and contract it slightly for 'day to day' me.

I don't actually agree completely, my dd is autistic, has specific challenges and is currently in my care (she's an adult, alternative is supportive living). My exh is not diagnosed as autistic but definitely has traits, and his own psychiatrist told him he was on the neurotypical side of the line that divides autism from the rest of us. My dp also shares some traits as does his dd, but not as many as exh. I really observe it as a continuum, my dd has given lectures on this!

For someone to be diagnosed as an adult indicates that they've managed to get to adulthood without a diagnosis. These may be signs but they arent used in clinical diagnosis.

My son was diagnosed at 2 because he was showing signs from 18 months. There is a big difference. The fact that you are able to understand, draw a diagram, put it on social media and argue the toss independently shows how different.
The areas for dx are known as the triad of impairments. They do not include any of what you have listed, they are indicators in adults, they could indicate alot of things. Only diagnosis would confirm based on the triad.

The fact that you are able to understand, draw a diagram, put it on social media and argue the toss independently shows how different.

My special interest and compulsions relate to diagrams and trying to explain things like this. You can think it's a flawed system and you'd probably be right, but it's how I perceive it and you can't make any assumptions on how "severe" my autism is based on it. At worst, I'm just trying to get people out of the good / bad linear way of thinking.

The areas for dx are known as the triad of impairments. They do not include any of what you have listed, they are indicators in adults, they could indicate alot of things. Only diagnosis would confirm based on the triad.

I know, which is why I've left the diagnostic process to a professional. I'm just talking about how I perceive day-to-day life and the experiences of the autistic people I've met, I'm not claiming it's a perfect system by any means

For someone to be diagnosed as an adult indicates that they've managed to get to adulthood without a diagnosis.

That fact that so many got to adulthood without a diagnosis is more indicative of the vast difference between autism understanding and services in the 60s/70s/80s/90s than it is of ability

Especially amongst already under-diagnosed groups, e.g. women (due to sometimes different presentation than men / stronger pressure to mask etc)

@TealightIndaWind thank you

@Staffy1 thank you

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?!

This is an interesting point, however all you have really done is back up the fact that nobody with an autism diagnosis wants it to be minimised.

I totally agree with the fluctuation but I would still use 'mild' and 'severe' in the context of pure cognitive development.

My 12 y old DS has severe learning difficulties, highly sensory behaviour and the cognitive development of a 2 year old.
He will never be able to lead any kind of independent life at all.
When I talk about him I would describe him as severely autistic.

The problem with listing the co morbidity as severe especially regarding children and paediatricians is that those like my DS who was classed as classic/severe autism at 2 the paediatrician felt more comfortable assessing his autism than making predictions on cognitive and communication. At 10 when assessed again his diagnosis changed to ASD, LD, communication difficulties. When asked that was as far as he would diagnose because his severe autism masked his abilities, but severe autism is not an option. I understand the changes but feel that making understanding for all on the spectrum has come at a cost for those like my child who seems to have all his labels removed.

My 12 y old DS has severe learning difficulties, highly sensory behaviour and the cognitive development of a 2 year old.
He will never be able to lead any kind of independent life at all.
When I talk about him I would describe him as severely autistic.

But he has severe learning difficulties, which is a major factor of difference.

AgntOso I have every sympathy with your points. I agree it's perverse.

@covidaintacrime the fact that you are able to draw a diagram and communicate interests shows how more able you are is what I'm getting at.

My son couldnt get to 2 without it being obvious, he wouldn't have escaped a dx in any era since the dx was given. He wont have a job, live alone or argue on social media because of his autism. That is how different he is from you and why he is more disabled. It isn't a perception of nt people, it's just a fact. He is more severely affected than most with the same dx and for most the comparison is extreme. I wouldn't wish to have his dx and I wouldn't wish it for anyone.

I truly wish I was arguing the other side of this and hope that we go back to having different diagnoses again for those more affected rather than the spectrum or colour wheel.

That fact that so many got to adulthood without a diagnosis is more indicative of the vast difference between autism understanding and services in the 60s/70s/80s/90s than it is of ability

Absolutely this x99999

My own Grandmother was so obviously autistic that it beggars belief she was never diagnosed. 'High functioning' to use that horrible term, but completely oblivious in social situations, prone to completely inappropriate outbursts, zero empathy or humanity, obsessive about numbers and patterns, no sense of self/individuality/apparent regard for appearance etc

Mother is clearly autistic too, but denies the suggestion because she believes all autistic people are totally dysfunctional and incapable of independent living. She masks like hell, again is obsessive, prone to embarrassing gaffes and outbursts, can't relate to anything outside of her own first-hand experiences etc. No diagnosis, but I can understand why given her outwardly 'normal' level of function. I know she's anything but functional.

I wasn't diagnosed until I was an adult, again, because I am able to mask just as well as my mother, and because of her own scepticism. She's still adamant I am not autistic myself, she laughs off the suggestion, despite every single other person who knows me well being of the opinion that it's blindingly obvious that I am. All three of us have the same overriding traits of obsessiveness, disregard for anyone or anything that doesn't fall in line with our particular bent at that point in time, an inability to relate to anything we have not experienced ourselves, being totally incapable of tolerating anything we find objectionable but appears perfectly routine to the majority of people.

I don't know what personal struggles either of them have/had in terms of tics, meltdowns, outbursts etc because the fact we are so alike means we find each other completely insufferable and avoid each other as a result, but the more I get to know all three of us, the more I realise how alike we are and recognise the obvious signs.

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.

@AgntOso

I actually agree with you, but disagree too if I could make any sense of that.

I don't want to take away or minimise your sons diagnosis, not at all. I'm sorry that you feel people are trying to, I genuinely don't want that. Your post is very valid and I don't even know what the answer this. I don't want people minimising my diagnosis, well more so my D.C., as they are younger. I just get pissed off when people tell me I am 'ok'. But for my children I want more acknowledgement that yes they do struggle and no they don't simply have 'mild' or 'high functioning' autism, because that label very much depends on what you are asking them to do.

There are different autism diagnoses, though.

DS1's is Autism Level 1 (Asperger's). He operates/masks well and has a high-ish IQ. An adult male with autism lives nearby, who probably has an Autism Level 3 diagnosis, and has the attendant learning disability.

This absolutely means that we can't ignore the high functioning/low functioning aspect of things. I'm taking away nothing from DS1 who struggles with executive functioning etc., but his autism affects noticeably fewer aspects of his life than the neighbour's autism.

the fact that you are able to draw a diagram and communicate interests shows how more able you are is what I'm getting at.

The premise of me being capable of communication and drawing a diagram potentially suggests I would be more capable in other contexts, but you have no idea of the rest of my life including my social capacity. Would I ever be having anything close to this conversation with you in real life? Absolutely not.

I don't know your son and I don't think it's fair either way to be making comparisons, nor can you assess my level of disability based on the tiny sliver of information I've provided on this thread about one specific disability I have.

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

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

There is a understandable fear that in diagnosing severe learning difficulties in children would be self prophecy, the same with language and communication. Low expectations of cognitive ability leading to low standards of provision.

I know a woman in her 30's, non-verbal, doubly incontinent, need support in all areas 24/7. There's no flying under the radar possible with that presentation of autism, and this is where I always come back to when others decide this isn't severe Autism, because it really is.