... 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.

Terms like "mild" and "severe" are really unhelpful because they tend to refer to how much the issue is perceived by a neurotypical person.

All good but This in spades. People really seem to think that the problem with autism is how it affects the neurotypicals around them rather than how it affects the actual autistic person themselves.

Can't you get terms like high functioning and low functioning? Is this old terminology?

Yes @Teapotuser those terms are generally not used much these days because of better understanding of the condition. 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.

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

I stand by the phrase "You've met one autistic person then you've met one autistic person" as even in both my Autistic children their difficulties couldn't be more incredibly opposite.

Really good illustration. Thank you OP.

High and Low functioning generally referred to language development but it was taken to refer to how well the person conformed to societal expectations.

Part of the problem ime is "the spectrum" effectively equals - to lots of people - rainbow and rainbows have a two ends, don't they; conflated with mild autism at one end and severe at the other. (rambling on a bit, sorry)

This is helpful, I think. DD2 (13) has ASD and I always add 'high functioning' to that because, on some level, I'm embarrassed that I'm using that label to describe someone who can talk, communicate her needs (to an extent) and have a degree of independence. I know there are other people with ASD who need to be fully supported in every aspect of life, self-harming, aggressive, etc., and it feels a bit unfair to imply that DD2 has it as hard as that. However, she does have quite extreme anxiety, can't show her feelings easily, is extremely shy, finds it very difficult to make personal relationships and struggles with comprehension.

DD1 (15) has learning difficulties and they're just agreeing to assess for ASD. She's chaotic, finds change very difficult, takes everything literally and to extremes. She hears a lesson about inappropriate touch and the next day thinks that someone has 'intended' to touch her inappropriately. The world is a very scary place for her.

Thank you for this. I absolutely love this. I think this is the best explanation I have ever seen.

I have a 13 year old with ASD. He is fully housetrained, cooks dinner, does laundry, grade 7 in GCSE physics. He does not leave the house and there are very few people he will actually interact with (in terms of looking at, never mind speaking). This makes things like GP appointments very difficult, assuming I can get him out the house and into the car to get him there in the first place.

He sees other kids and wants to be like them. He is terribly distressed by things we don't even notice like kids clicking their pens or squeaking chairs or kids calling out or too many people in the corridor. We have tried 5 schools. His best attendance is 60%. Local special schools do not take children who can achieve age appropriate academic goals. He gets so depressed and anxious at the thought of going that he pulls his own hair out and becomes depressed and cannot get out of bed.

I am not sure what the future will hold in terms of him being able to live independently in society although he is likely to have some great GCSE grades.

Is he high or low functioning?

His same age friend with ASD has not been able to find a school including special schools that can cope with his behaviour. If he is scared or upset he will run or lash out at who/whatever is around him. Triggers are unpredictable and without warning. He must have two adults around anywhere he goes (as he may require restraint or removal for his safety and others). He can also do lots of independent self care and is academically able. Is he high or low functioning?

What about the boy who goes to school every day and seems happy to work at his desk and follow the daily routine. He does not have much speech and academic progress is slow, but he joins in some clubs and seems to have a social circle. What level is this child?

The colour wheel is much better.

I have seen OTs use something similar which is a wheel with each spoke representing a different skill set.

Yes spectrum is a word that brings NT people to the discussion that "everyone is on the spectrum" which is wrong/unhelpful/missing the point etc. and shows they actually have no understanding of what they're talking about.

Thanks for sharing this OP. We think of it like a spider diagram.

I completely agree that people really need to understand that there's no such thing as being "mildly" autistic or "slightly" autistic. In order to receive a diagnosis of autistic spectrum disorder a person has to experience significant difficulties with social interaction and with dealing with everyday life. Anyone who has been diagnosed with ASD therefore has a significant disability regardless of how obvious it is to those around them. "High functioning" or "Aspergers" are terms that tend to be given to people with ASD who are more academically able or more able to "mask" their autism and appear "normal" but I'm not sure they're helpful terms as they give an erroneous impression that these people are somehow less affected by their autism and less in need of help when that is often far from the case. So YANBU OP to want to share this information. ASD is often very poorly understood by people without direct experience of it and autistic people face a great deal of discrimination and difficulties as a consequence.

I'm a family support worker specifically working with neuro diversity. We use the colour wheel as a visual aid and often use the phrase "you've met one person with autism..." A lot of the time I avoid the word spectrum completely and concentrate on the challenges or needs which arise from the autism. The autism is simply a constant, the requirements around it subject to change in the interests of the individual.

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

Sorry. Just looked on google. I like the words too.

@FlibbertyGiblets you are right that this is how lots of people understand it - especially those who seem to believe that "we are all a little bit autistic" (i.e. parallel with the idea that "we are all a little bit bisexual"). Another part is that people don't seem to be able to get to grips with the idea that scientific knowledge develops and grows over time and that the scientifically accepted truth in the 1990s isn't the same as the current understanding (my mum was an SEN teacher in the 1990s and learned all about Autism then. she doesn't believe I have autism, despite having being diagnosed as such, because I don't match up to what she was taught 30 years ago)

A bit of an explanation here the-art-of-autism.com/understanding-the-spectrum-a-comic-strip-explanation/

The only problem I have experienced and witnessed with others is that the removal of the word severe leaves them fighting for provision and resources. My child is severely disabled but is left with reports that do not back this up. Paediatricians not wanting to diagnose severe learning difficulties at young ages and accompanied by ASD.

Yes I really like that one @Murmurur and have seen it before. But I have also found this article helpful, so the images in my OP combine the two slightly different analogy illustrations in a way that I think communicates it better than either of these two manage on their own.

@Boulshired the word severe should definitely still be used in describing the effects that Autism has on your child, where appropriate.

The difference is that for example "He has Autism and this presents in him as severe language and communication difficulties and profound motor skills delay as well as mild sensory difficulties" is a different statement than "He has severe Autism". Absolutely some children have some extremely challenging issues caused by their autism and that shouldn't be diminished.

This explanation doesn’t quite sit right with me because it still places people with ASD as “other”.

YANBU. My DD was diagnosed with ASD aged 8, now 13. We were told she would have had an Aspergers diagnosis in previous years. High functioning was not mentioned but others assume she is and I find it really unhelpful. On a good day you might not know she has ASD, on a bad day she will be sitting under a desk at school in an empty classroom shaking and crying. She can go in to town with friends but had a year in special school. And no, high functioning autism doesn’t mean being a bit socially awkward and being good with computers. Get rid of high and low functioning and focus on the persons actual needs.

Yes agree with this. Most people seem to assume autistic people who are verbal are on the mild end and non verbal on the severe end. This completely ignores all the other issues a verbal person will be dealing with. Also masking is seen as positive, it’s not and leads to further issues and less access to support.

I definitely agree with these principles. I’m autistic myself in the “high functioning” category in that in communicative, hold a job down and have a family kind of way. I make well. It’s difficult to explain to others. Even a friend of mine said when I told her about my diagnosis (I was diagnosed as an adult and we’ve been friends a long time) “But I’d say only very mildly”...and she’s a Speech and Language therapist! The only “mildness” about it is that NTs experience my Autism mildly. It still has a huge impact on me, it’s just more behind closed doors.

I think one of the biggest challenges we face is that experts such as Simon Baron-Cohen is still spouting the whole “We are all on the spectrum somewhere”. Nope. Not everyone is. (Ironically it wouldn’t surprise me if he was). Sarah Hendrickx was an expert in Autism in women for years before she realised she was Autistic too!