... 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.

Do you have Autism yourself @GlowingOrb? In my experience, I find that I have more difficulties when I am not perceived as "other" and am therefore expected to deal with things in the same way as everyone (NT) else, compared to when I am understood as "other" and appropriate accommodations made for my needs. I understand that "Othering" is one of the deadly sins now, but for me, being acknowledged as "Other" isn't a problem if that is combined with acceptance/celebration of that diversity.

In my experience, I find that I have more difficulties when I am not perceived as "other" and am therefore expected to deal with things in the same way as everyone (NT) else, compared to when I am understood as "other" and appropriate accommodations made for my needs.

I agree with this. And it's the prominent distinction between equity and equality.

It’s better than previous terminology, although not ideal - as mentioned, doesn’t serve those who are severely disabled by their autism and will need lifelong care.

Can also be a bit limiting for those (like me) previously classed high functioning. I have a few severely impaired areas on the wheel but I work around these. My worry is it could cause ‘high functioning’ people to see that, think ‘omg, I’m seriously disabled’ and give up on work/self-sufficient living, when actually they’re fully capable of it with support and adaptations.

Is there any words on that colour wheel? To help with knowing the shape? Or to show development in different areas?

This is along the lines of what I was wondering about too.

I like the basic concept of the wheel, but personally I really struggle with things that lack context, one of the bigger issues I have with my autism, and don't really do 'abstract' or things that aren't tangible.

I think the idea of each of us just being a randomly shaped section of the wheel is sound, but that doesn't do anything to describe the actual individual unless the wheel, and the colours themselves, have definitions. I appreciate that is perhaps not the purpose of the concept, and if it's simply to demonstrate the variance between individuals with autism then it achieves that perfectly well, but as I said, it doesn't satiate my personal autistic pedantry or provide me with any additional insight.

Accept I'm probably just expecting something out of it that it's not intended to provide though.

This is the diagram I use for a wordier version, Down and Sleep in case that helps.

@Boulshired yes I do worry about the voices of those who are profoundly disabled in this.

At our "autism for parents" course there was one parent who had a nonverbal 5 year old. She lasted one week. I think she was utterly alienated by the rest of us talking about the struggles we have had with our mainstream schools. So many of the "voices" naturally come from the more verbal.

These resources are excellent

I don’t have a formal diagnosis. My dd does and it’s obvious from going through the process with her that I would too if I were 20
Years younger.

I have found the world to be pretty accepting of me because I went into academia where the stereotype of the high iq, obsessive yet absent minded professor is well appreciated.

I also know for my dd that the only thing that truly upsets her is people suggesting she can’t be a part of regular society, hence why “othering” stands out for me. She is extremely intelligent, articulate and compassionate. She masks well. She rarely melts down in public. She would make a terrible psychologist because she isn’t great at reading tiny social cues, and she shouldn’t be a chef because she only eats about 10 things, but she would be a great mathematician or chemist or even artist. If she wants one day she can find a similarly quirky life partner just like I did and they might choose to be parents. What I am trying to say is that if she wants a “normal” life, it’s available to her.

Sorry just wanted to add this to the diagram I posted above: I've done a version for myself for clarity, will share in case it's useful or educational for anyone! This shows that not all symptoms of autism are prominent amongst all people, contrary to popular belief

I have ASD and would have been defined under those terms as "High Functioning" - I have a job, a family, and am articulate, there's a lot of things I can do. However that doesn't mean my autism is "mild" it just means that my symptoms aren't in the same place on the above "colour wheel" as someone who is non-verbal and unable to communicate.

Oh how I wish people could understand this. Thank you for posting OP

'But you are ok though'

Urgh. You have no idea how hard it is to present this 'ok' to you

Oh no!! Wrong thread, that's such an awful example ! I'll get it deleted

Hahah best misthread post ever

Bloody hell, I promise I'm not that much of a weirdo (usually)

This is brilliant, OP.

I would like to recommend the book "George and Sam" by Charlotte Moore. If you haven't already read it, I think you would find it really interesting

@covidaintacrime

This is the diagram I use for a wordier version, Down and Sleep in case that helps.

This is a genuine question, and I hope not too much of an annoying one. I honestly don't know and would like to.

Where does this place someone who has some of those traits, or perhaps many of them to various degrees, but does not quite meet the bar for autism? I have seen autism quizzes online which work on a points basis - I know they are not diagnostic, but is actual diagnosis still a matter of how strong the traits are and how much they affect your life? Or is there a qualitative difference between autistic and non-autistic? If so, how is it identified?

In my total ignorance, the idea of a spectrum covering everyone, starting from "the opposite of autistic (therefore possibly a different type of neurodivergent)" through to "average", "verging on autistic", "mildly autistic" all the way to "severely autistic", seemed to make sense. I guess. i.e. an absent-minded professor type might have more in common with someone who used to be called "high functioning", than the "high functioning" person would have with someone non-verbal.

I can see that this concept is considered incorrect, but I lack an understanding of what I should replace it with.

I don’t have a particular problem benchmarking against NTs.

But I have a problem with the fact that labels don’t take into account the fluctuating nature of autism. My son has Aspergers. He never spoke til he was five and I was amazed he didn’t need to go into a SEN school. He was stimming all over the pace completely averse to noise etc...obsessions.... identifying as a number not a human all the tropes.

I never even bother to mention it now. He eats sleeps chats poos.... all completely normal. I would say he’s gone from quite severe to unnoticeable. That’s been the biggest surprise for me .

Very much enjoying your questions, Bourbonne, so don't worry about it at all! I'm going to leave some of it to people who are experienced in assessing autism to answer (as I only know my experiences, but not the "behind the scenes" of anything).

But I think, based on my knowledge, it's a combination of symptoms that suggest autism (I'll link a list at the end of this post) and the extent to which they affect the individuals. So people may have certain traits of autism, but for example not everyone who is depressed or struggles with eye contact is autistic. The spectrum itself does not encompass non-autistic people, and I think the use of the word "spectrum" suggests something linear whereas it's realistically a bit more like the blobs in some of the above diagrams.

So for example when it comes to three symptoms of autism - abnormal speech (S), poor posture (P) and no eye contact (E) you could rate all of these things out of 10 for example. Then one person could have S (10/10), P (5/10), E (3/10) whereas another person could have S (3/10), P (9/10), E (6/10). Of course it's not nearly as quantifiable as this, nor can you really assess struggle, I'm just trying to direct away from the linear terms that "spectrum" suggest.

So essentially it's not really on a line from "bad autism" to "good autism", some people have 10/10 struggles with everything on the day-to-day and some people maybe have 3/10 struggles with everything on the day-to-day but this can constantly adapt (as can skills / traits for neurotypical people). Sorry I hope that makes sense, I'm trying to explain it from my autistic perspective but it may make the whole thing more confusing! But no, non-autistic people may have some traits of autism but do not count on the spectrum.

If you're asking abut the diagnostic process, I'll shut up and leave someone else to input their thoughts Apologies for the maths-iness towards the end, I'll draw a diagram if it helps!

I think this is a wake up call. The vast majority of parents with children & young people that have SEN or SEMH needs that have not been excluded from schools but are unable to attend over years not receiving education.

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.

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.

autismspectrumnews.org/profound-autism-is-the-term-we-need-to-provide-critical-specificity-to-a-broad-spectrum/?fbclid=IwAR0oIXKa5O6psf0aXKfgIwK7uzirqA_gxnn24qT2VEE3ZWX-bs3uHZsCfUQ

@AgntOso It's deflecting, I've had it with some people we've been.working with, they've changed tack now someone who worked with DD a few years ago is involved

@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.

I kind of agree with this. Autism is a blanket term. When asked (if it's important the person knows, such as a medical setting) I say my son has severe learning difficulties as well as autism, as I don't feel saying he has autism describes his difficulties enough any more, with the range of people who are autistic. (Although à lot of people still know what I mean by severely autistic).

Sorry couldn't resist drawing a diagram! I want to make it clear though, not claiming this is 100% accurate this is just how I perceive things as an autistic person.

The blobs in this wee diagram represent people with autism, and the difference in colours represent the issues they struggle with.
The key (though it could really be any examples of autistic symptoms, these are just a few I picked).

Red: Reduced Eye Contact
Blue: Poor Posture
Green: Social Difficulty
Yellow: Anxiety
Purple: Depression

So you can see Person C has very poor eye contact and posture, as well as a lot of social difficulty but isn't (on the day-to-day) depressed or anxious. Whereas Person A is very anxious, and also has poor posture as well as reduced eye contact. This is just my attempt to show a snapshot into a daily experience, but it's good to keep in mind (like cells) the blobs are constantly changing in colour and size depending on the issues that are affecting the individual at the time.

As you can see, there's not a linear line of "good to bad" autism or "high functioning to low functioning". So for example someone can be heavily affected by their posture, whereas another person could be not especially affected by their anxiety - or they manage to find ways to cope. It's probably more complicated to how I've drawn it as there are many more symptoms and additional effects, but I've tried to show how I see it. Not sure if this helps, but hope it does

These are the autism symptoms for adults, as described by the NHS (as I've only provided a few very broad examples for clarity) www.nhs.uk/conditions/autism/signs/adults/