... 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.

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,

An awful lot of women (there will be men too, but as it stands the diagnosis of women is rocketing) who are being diagnosed simply because understanding is greater and they are already 'in the system' due to having mental health problems. My DS friends mum was diagnosed a few years ago after 20 years going through metal health services. Someone suddenly said, oh, what a minute, let's refer you for an assessment. It's surprisingly common.

I hope you get your diagnosis soon, it will firm everything you mentioned making sense when you realised right into place

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

No, but as I described earlier in the thread, my meltdowns and 'autistic' flare-ups are quite obviously anxiety, brought about by my difficulties in coping with everyday tasks and interactions. I have also suffered depressions on and off throughout my life that I now realise are also co-morbid with the autism.

People do not 'develop' learning difficulties because of their autism. They most definitely experience anxiety and depression because of it though.

Can experience anxiety and depression because of autism I mean. It's not going to occur in every single case.

Anxiety exists in one in five people with autism (according to the link I used upthread). More than 5 in 10 autistic adults have had depression (according to this www.autistica.org.uk/what-is-autism/signs-and-symptoms/depression-and-autism). Also according to said link, Autistic adults (without an intellectual disability) are over 9 times more likely to consider suicide than the general population

n awful lot of women (there will be men too, but as it stands the diagnosis of women is rocketing) who are being diagnosed simply because understanding is greater and they are already 'in the system' due to having mental health problems. My DS friends mum was diagnosed a few years ago after 20 years going through metal health services. Someone suddenly said, oh, what a minute, let's refer you for an assessment. It's surprisingly common.

I have, at various points, been diagnosed as Bipolar, Bipolar type II, Schizophrenic, 'nothing wrong apart from atypical depression', investigated for possible Borderline, all of it complete and utter bollocks.

I can assure you that my experience is remarkably common for adults with autism, and it's really no wonder so many end up entirely sceptical of NHS mental health services.

@RockinDobbin

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.

No, you don't have to have anxiety to get an autism diagnosis.

In order to get an autism diagnosis you must present with difficulties in social interaction, social communication and ability to think flexibly. You are extremely likely to have a different sensory system than most people, experiencing some sensory experiences too much and seeking out others in a way that is atypical. These core difficulties manifest in a load of behaviours such as narrowed interests, upset at routines changing etc but those behaviours are not diagnostic, the difference in processing that lies behind them is the diagnostic criteria.

These diagnostic criteria make anxiety extremely common as an emerging behaviour. The vast majority of autistic people who don't have learning needs and can express it, say they experience significant anxiety.

@Teapotuser

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.

Some people find using words to describe the severity of the disability very useful in daily life.

Interesting to hear people comment that learning difficulty should be assessed separately from autism - of course it should be! but it took that comment to make the obvious seem clear to me. Does a severely disabled (by which I mean requiring full-time care) person with autism always have a learning disorder - or can you be “severely autistic” without the learning disability? Genuine question.
Also, re the anxiety/depression - and the other psychiatric disorders which I know can be more common with, but are not the same thing as, autism. How to separate them from the autism diagnosis in any assessment of needs, given that they can happen in anyone, yet are relatively common with autism?
These are genuine questions and no offence is intended.

Does a severely disabled (by which I mean requiring full-time care) person with autism always have a learning disorder - or can you be “severely autistic” without the learning disability?

I will never live independently - I've gone from the care of my parents to the care of my husband. I don't work and he does almost everything for me. But I'm considered "high functioning" because I don't have special needs. I think it's an interesting question also.

My DD's autism has some really profound areas of need. She needs a full 32.5 hours 1-1 to access school. Her particular areas of profound need surround her anxiety, rigidity, sensory processing and social skills. She understands instructions well but has no concept of the bigger picture out of her bubble. I would say she is less effected in other areas. She doesn't have a learning disability. She can't easily communicate what she knows but she certainly takes it in.

The anxiety thing is a headache, CAMHS will not accept autistic children for anxiety here because it is just a part of their autism apparantly in my area.

Yes I know I have 2 of my 4 are autistic and they didn't take it off a brick wall.

I don't agree with the dismissal of SLD as being unrelated to autism. I think it is more complex than that. And obviously a person with SLD may also experience extreme anxiety yet the "unbothered by their autism" narrative is frequently being pushed

Yes you can be severely autistic without learning difficulties. You can also be severely impacted by autism one month or week or day and manage much better another time. Doesn't mean the bad month wasn't real.

@RockinDobbin

Yes I know I have 2 of my 4 are autistic and they didn't take it off a brick wall.

I don't agree with the dismissal of SLD as being unrelated to autism. I think it is more complex than that. And obviously a person with SLD may also experience extreme anxiety yet the "unbothered by their autism" narrative is frequently being pushed

It's not unrelated. There is a correlation between SLD and autism. Where they come together they are very disabling, but the SLD isn't part of or subsumed by the autism.

Autism with SLD isn't severe autism and autism without SLD isn't mild autism. Autism with SLD is autism complicated by a comorbid condition.

Sorry, I mean the definition of severe autism should not be exclusively to mean autism that co occurs with learning difficulties, and autism that occurs without learning needs shouldn't be assumed to be mild.

so can you have SLD and severe autism? or can only autistic people with no LD be severely autistic?

The idea that "severe learning difficulties isn't part of autism" but anxiety is directly because of autism really doesn't follow logic.

Not all people diagnosed with autism will have learning disabilities, but autism is a disorder of social interaction and communication which when hindered can profoundly affect a persons ability to learn.

People can have learning disabilities without autism, autism without learning disabilities, and autism with learning disabilities.

People can have anxiety without autism, and autism without anxiety, and autism with anxiety.

Yes Rockin, in fact that would be typical because of the interaction between learning difficulties and autism. What I was trying (badly) to say is that autism severity is not mediated by learning needs. Very able people can also be severely autistic.

It is not as if only insulin-dependent diabetics get help though is it. Those with tablet or diet-controlled diabeties also get help and support and so they should. The problem it seems is the ASC funding pot is not big enough to start with to enable support/accommodations to level the playing field.

happy feather
Respectfully, that's a misunderstanding of what learning difficulties means.

I am talking about general learning difficulties, what in days gone by we would have called a "low IQ" or general delay.

Autism doesn't "cause" a low IQ. A person with autism may indeed (probably will) experience barriers to learning (many caused by being autistic in a NT world, so being taught in a way that doesn't match their learning style, or may have specific higher order problems eg with inference or deduction), and may well have additional learning issues like dyslexia. But that's a different issue.

A lot of labels are unhelpful. As a retired anaesthetist who was the clinical lead for autistic and special needs patients in my department, and also autistic myself and with an autistic daughter, I didn’t use them.
I approached patient care on an individual problem related basis, so we knew what each patient could or couldn’t handle and what adaptations we would need to make for them in the anaesthetic room - for example dimming the lights, hiding equipment, limiting staff numbers, bringing a favourite object in with them, singing a song that was one of their obsessions.
I even got one autistic teenager to anaesthetise himself, as he couldn’t bear people near him or touching him - I demonstrated the mask on myself, gave him a clean one, turned on the anaesthetic vapour and walked away to stand with my back to him in a corner.
The level of adaptation was not related to the level of intellectual function - some of the most intelligent were the most anxious and needed a lot more adjustment of the theatre environment.

I am talking about general learning difficulties, what in days gone by we would have called a "low IQ" or general delay.

There seems to be some misunderstanding of learning disabilities and difficulties throughout the thread.
a learning difficulty does not affect general intelligence, whereas a learning disability is linked to an overall cognitive impairment.

Apologies, I think I've used 'learning difficulties' when I actually meant 'learning disabilities'.

I love the colour wheel idea. My 5 year old ds had his assessment yesterday and I was expecting to receive a diagnosis of ASD. The Dr said ds has Asperger's and would be writing up the report when we had finished on video call. I was confused because I had been told repeatedly by those in the SN community that the diagnosis is just ASD or not with no elaboration. However, when I queried the doctor on this, she said that the way they diagnose is reviewed all the time and she was in this case giving a diagnosis of Asperger's. I was really surprised.

They shouldn't be giving Asperger's diagnosis @Rysimo it goes against the dsm

@HazeyJaneII

I am talking about general learning difficulties, what in days gone by we would have called a "low IQ" or general delay.

There seems to be some misunderstanding of learning disabilities and difficulties throughout the thread.
a learning difficulty does not affect general intelligence, whereas a learning disability is linked to an overall cognitive impairment.

I have been an educational psychologist for 25 years and we in the profession definitely say general learning difficulties to mean "overall cognitive impairment".

We say specific or general learning difficulties.
If that isn't correct then virtually the entire profession that generally diagnoses these needs is making it.