... 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.

But your children don't have severe learning difficulties/ disabilities? That doesn't mean that nobody does?

No of course not. I am saying that professionals and local authorities make assumptions about non verbal autistic children and their intellectual capacity, even when very young like my twins (4). At our tribunal the EP said, in justification of placing them in a PMLD school, “well we can’t say they don’t have severe learning disabilities”. Thankfully the judge pointed out that they also had no evidence that they have any learning disabilities at all. In fact that school had multiple young children with a primary need of GDD and a secondary need of ASD which seems entirely bizarre to me.

“And why would having both autism and severe learning needs mean that a school for children with only severe LDs is appropriate?*

In this case because it’s cheaper, basically.

Also, no one with intellectual impairment of any cause or with any comorbid should be placed anywhere where "it's assumed they are unable to learn".

No of course not. However, when a school’s Ofsted report states matter of factly that one of the most able secondary age pupils can spell “breakfast” and your child can already spell their own name at 4 despite being non verbal, it’s clear that the professional expectations of their abilities were below what’s actually possible if they thought that was a suitable environment.

[quote AgntOso]@sinkGirl this 10000% my son is hyperlexic too. Not formally diagnosed but acknowledged by professionals involved. He moved on to other languages including too.[/quote]
Yes, DT1 was playing a Spanish spelling game today... he has no idea what he’s spelling but he just loves letters and words. Just hoping one day he will understand that the words he loves so much mean things!

It can't be pinned down. Every person is different. DD2 (13) has been going to school during lockdown. Initially, 9 kids in her class. She really enjoyed it (for the first time ever). By the end of last week, that number had risen to 14. She's had two days off because she's felt unwell. Then today, she said 'I don't want to go to school. I want to learn at home. There are too many people.' So her social anxiety has kicked in because the numbers rose and a particular girl has arrived. That's part of her ASD. A child who seems far 'more autistic' might be completely fine with many children in a class.

It’s utterly utterly shit that those who present somewhere in the middle or who mask don’t get the right support. We were at least fortunate we didn’t have to fight for diagnosis or for an EHCP or specialist placement (although did have to fight for a sufficient plan and the right school). I know so many parents whose children literally have no suitable school within 60 miles - not disabled enough for specialist, too disabled for mainstream. LAs end up spending out obscene amounts for independent settings sometimes with boarding due to distance because they don’t provide any suitable maintained settings. It’s absolutely appalling and more needs to be done about it.

@Prestel "so-called "high-functioning" autism is still a very significant disability in its own way and rather more challenging than being slightly more "quirky" than the average NT person,"

Oh so, so true!

@10brokengreenbottles . We are in the process of (hopefully!) getting her a place in a local unit specifically for kids with severe anxiety associated with mainstream school. Her current school are being great (although some individual teachers not so much) but CAMHS... bloody useless!

*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.*

This is me and knowing I’m not alone really helps. Some days I feel ‘normal’ other days ‘disabled’. Today is a disabled day. It’s the anxiety that is crippling. How can I manage it??

@Coronawireless

It only becomes a problem when these loud voices of people who have had an education and are earning and living in their own homes try to divert funding from people who have no hope of ever providing financially for themselves.

I have a job, which took me a very long time and a lot of support to get. I live independently, barely, with help. I have survived three suicide attempts. Without help I may be dead right now, but sorry I diverted fund from those more worthy of them than me.

@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 agree my child is 4 she was diagnosed at 2, she has to have 24 hours care, these sorts of threads fustrat me to be honest.

Also ive been reading and i agree with u throughout and in same situation 💗

@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 cannot see anything other than wavelengths of colour in the circle, which can be ordered linearly from low (red) to high (blue) wavelength.

But I get your point. It's just a small fraction of us is neurodivergant compared to the neurotypical.

Can I suggest to anyone reading this, females especially as females far less likely to be picked up as autistic, that if you feel it would be helpful - legally employers have to make reasonable adjustments for you, for example, you are legally entitled to request a diagnosis.

If you feel you don't fit and don't know why, you can ask your doctor to refer you. It took a long time for my appointment, but I always was prepared to accept the result so I could figure out what was "wrong" with me.

The National Autism Society can support you even if you are going for diagnosis or are supporting someone. Access to Work can pay for support at work, coaching to help you in your job.

I had to find out the above the hard way - I hope to help anyone be aware of what help is available

The terms “high / low support needs” are more useful than high / low functioning.

I read that as Sasha Baron Cohen.

Simon BC is clearly ignorant.

Up to date information can be found at the National Autistic Society.
www.autism.org.uk/

Diagnosis does not use "Mild Autism" and "Asperger'" any more.

Here is what is used now:

www.autism.org.uk/advice-and-guidance/topics/diagnosis/diagnostic-criteria

@Oddgirlout

*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.*

This is me and knowing I’m not alone really helps. Some days I feel ‘normal’ other days ‘disabled’. Today is a disabled day. It’s the anxiety that is crippling. How can I manage it??

Phone the NAS - they have professionals who can help you and listen to you.

www.autism.org.uk/

@covidaintacrime

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.

Yes - this is why I urge anyone who thinks they might benefit from assessment by a consultant ask their GP for a referral - the law says you are entitled to a referral - because then if you are found to be, you are protected under the Equality Act 2010, plus your employer must consider "reasonable adjustments" which would improve your working day, reduce any stressors etc

[quote covidaintacrime]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/[/quote]
I love this diagram! This is better than the colour circle because it shows in colour multiple disorders and that different people may have multiple, and may "no person is the same"

For those who were previously diagnosed with severe or low functioning autism they . haven’t had on the whole a suitable replacement diagnosis. Severe learning difficulties are what they say on the tin, they are obstacles in academic learning so not suitable. Then in the UK there is learning disabilities which is all over disabilities and more linked with IQ but paediatrician prefer the wait and see approach with autism and this diagnosis, so go with global development delay. When the diagnosis is given you then have the problem that even the NHS interchange difficulties with disabilities never mind the general public. DS2 as a teenager is diagnosed moderate learning disabilities as in some area he can function at primary level but in other areas at pre school age if not younger. He will probably end up with severe learning disabilities. But I use severe learning difficulties as this is more understandable even though it’s wrong. He has lost a diagnosis that explained his condition in two words to a paragraph of waffle.

[quote pleasefeedthecat]@Coronawireless

I have a son with aspergers, but there is a great deal of doubt as to whether he'll cope independently or be able to work. He can shower, brush his teeth and knows all about the Byzantine Empire in the nth century, but that means little in terms of coping with adult life.

He'll probably live with dh and I until we're dead. There is no other family. Who will care for him? Where will he live? In a hostel? On the street? Who knows.[/quote]
The job centre (post Covid) might be able to get him some part time work - a manager that can teach him job skills, and he may learn the "correct" way to work in a job with support tailored to him.

He is entitled to support to get into work - the Government's "Access to Work" scheme, which may also lead him towards employment that offer him "work skills".

He could also make himself some money on Youtube for tne Byzantine Empire. I'll swap him for my encyclopaedic knowledge of 7th century Mercia which is of no use in every day life whatsoever but to me is unendingly fascinating amd explains so many modern socio-economic constructs. You will find the Byzantine Empire probably helps explain something to your son

Lol you can stop right now at trying to merge the gender and autism spectrum. Autism is a real thing, I have to deal with it every fucking day. Don't do it.

@pleasefeedthecat

I guess somebody with high care needs gets a roof over their head and food. This is potentially more than my two dcs will get. These are the type of people who kill themselves. Extreme? Maybe, but it happens and this is what I think about at 4am every morning.

No I completely understand that. Thankfully together, if neither of my sons marry they have skills between them to look after each other and I plan on getting the house in their name as soon as they are out of university, so if either need to have to work part time to cope with life they haven't got to stress about paying a mortgage or rent. Hopefully it's anough if a start in life for them - I can't take it with me.

@ColintheCrow

Lol you can stop right now at trying to merge the gender and autism spectrum. Autism is a real thing, I have to deal with it every fucking day. Don't do it.

Who's takling about gender and autism? Do you mean sex and autism?

Sex is determined, autism a medical condition with different levels of abilities.

@ColintheCrow

Sex is determined, autism a medical condition with different levels of abilities.

I would agree with that - so what issue us it that someone has linked sex (or gender) to autism?

Females having had to be put into social situations and expected to mask more or risk ostracism is a social thing but as a result of her being female - she learns to mask because she has learned to do so she is more likely to ve accepted socially, and less likely to get "into trouble" at school from disagreements over her not fitting intl the stereotypical space tjat society has carved for her.

Like for like a male would be identified/diagnosed at a similar age, as they tend not to mask - they learn from an early age most of life will bend round them so masking is not as necessary.

@TirisfalPumpkin

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.

The former people will qualify for care (as long as it exists, which does not depend on terminology, but politics) regardless of how their condition is described. See also the point the OP made about severity descriptions for the individual traits, rather than the condition overall.

But the bigger issue than either of your points is the huge numbers of people considered high functioning who need certain support and don't get it (which in my experience, is most of them), because of those misconceptions. This framing does help us.

@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.

It is your perception that we are not "very disabled", because our disability is not an inconvenience/obvious to you as some might be. I feel very disabled by being autistic (well, by society being autistic-unfriendly), though you might assume I need little or no support.

Is your son's only diagnosis (or condition, even if not diagnosed) autism, or does he have others? E.g. a learning disability as well. If so, you should not be conflating the effects of those with the effects of autism. I realise it's impossible to separate them out in any one individual, but that's exactly why you can't look at him and decide it is the autism that is severe, rather than the combination of conditions.

And even in people who are solely autistic, parents and medical professionals often assume they are more severely affected simply because they are non-verbal, when actually they may be very capable in other ways (though that may depend on getting appropriate communication right in the first place).

@movingonup20

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!

You could plot the autistic-type traits of NT people (it's common for close relatives to have some autistic traits) on a similar diagram (though I don't like the one being used in this thread; I have seen better labels on the spokes), but it still wouldn't place them on the autistic spectrum, which only covers people who are actually autistic.

Everyone has some levels of traits that in autistic people are defining, but t doesn't make them a little bit autistic. Like lots of people have some level of hearing loss, but they still don't meet the criteria for being diagnosed as d/Deaf. And someone who likes the things on their desk neat is not a little bit OCD.

The trouble with imagining it like this is that it marginalises the people who do actually qualify as autistic (or whatever other disability), and sticks them at one end of a line which does not describe their 2D experience.