... 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.

@RosesforMama

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.

Respectfully, I disagree.

Humans learn mainly through communication.

Autism is a disorder of communication (amongst other things).

Communication is made up of both receptive and expressive components. When either or both of these components are severely impaired learning can be difficult, or impossible.

I agree that autism doesn't "cause" anything, autism is a diagnosis of behaviour.

I'm yet to see the report, but that is what she said. Like I say, I was surprised.

Sorry @RosesforMama, I'm just posting what Mencap and Learning Disabilities.org (and ds's Educational Psychologist and LD CAMHS key worker) say.

I genuinely believed that this was the distinction between Learning Disabilities and Learning Difficulties, as defined in the UK.

www.mencap.org.uk/learning-disability-explained/learning-difficulties

hazyJanell
I have taken a look for clarification. The dsm (and therefore I suppose "medical") term is learning disability to refer to limited intellect. The SEN code of practice however uses "learning difficulties" not disability. Perhaps this is where confusion arises.

Example:

www.norfolkepss.org.uk/information/severe-learning-difficulties/

Interesting to see how those people using "with autism" instead of "autistic" are also generally the ones supporting the linear model, high v low-functioning etc.

I am NT but DD is waiting for assessment. She had 2 therapists and a psychiatrist say they believe she is, but they are not the right sort of therapists and psychiatrist to diagnose her

DD is 14. She has extreme anxiety, depression, sensory issues, extreme mood swings, social difficulties, executive disfunction.... but she is verbal, articulate, intelligent, has "socially-acceptable" stims and can act the part of a together young woman like nobody's business.

She has been masking for so long sometimes she doesn't even know who she is.

The wheel diagram is helpful, as to call her "high functioning" totally disregards all the areas that she struggles massively with. Or do those things not matter because they are hidden? I have been told she is not "disabled" enough to be a priority for the support she needs, as she gets good marks when she is in school... despite her attendance actually only being 40%.

The terms high and low functioning are directly related to a person's usefulness within society. A better description might be "has high or low support needs" - still short and snappy without the ableist overtones of a "functioning" label.

Extract from code of practice (p 97 if you are interested)

Cognition and learning
6.30 Support for learning difficulties may be required when children and young people
learn at a slower pace than their peers, even with appropriate differentiation.
Learning difficulties cover a wide range of needs, including moderate learning
difficulties (MLD), severe learning difficulties (SLD), where children are likely to need
support in all areas of the curriculum and associated difficulties with mobility and
communication, through to profound and multiple learning difficulties (PMLD), wherechildren are likely to have severe and complex learning difficulties as well as a
physical disability or sensory impairment.

6.31 Specific learning difficulties (SpLD), affect one or more specific aspects of learning.
This encompasses a range of conditions such as dyslexia, dyscalculia and
dyspraxia.

Strange that there isn't consensus.

@KihoBebiluPute

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.

This stood out to me. My DC has just been diagnosed and my Mum thinks I shouldn’t tell him, she didn’t want him to feel he is different, and doesn’t want him to be labelled. My answer was that he is different to some of the other children in his class for example, because he finds some things much more difficult than they do. At the same time I want to be able to tell him about his diagnosis in a positive way, and explain to him that lots of the brilliant things about him are down to his ASD.

Because severe learning difficulties isn't part of autism. It's a comorbid condition; a number of children who have severe learning difficulties also have autism, and their autism is impacted by their learning needs but the learning needs aren't "because of" the autism. They impact each other but you could easily have one without the other.

This is absolutely, unbelievably 100% untrue and why children like mine are frequently placed into inappropriate specialist schools for profound and multiple learning disabilities.

Autism on its own ABSOLUTELY CAN cause significant delays in learning, inability to speak and communicate etc. I just went through a SEN tribunal fighting against this assumption that my twins are intellectually impaired and therefore have low IQ and are unable to learn. It’s patently untrue. NT children learn from their environment and from others. If an autistic child has little interest in other people, fixed and longer interests, they don’t mimic things that others do, etc this can absolutely impact the skills they learn.

This myth does an enormous disservice to children who are severely impaired by their autism and who are written off by this kind of thinking.

My twins are extremely bright - both have amazing problem solving skills, and one has hyperlexia and is learning to read despite the fact he can’t talk or otherwise communicate besides a bit of PECS. I had to spend most of a year of my life fighting against my LA to get them into an ASD specialist school where they are doing incredibly well because the strategies they need are those for autistic children, not children with learning disabilities.

It’s important to understand that perpetuating this myth is harmful to many who are significantly impaired by autism.

The terms high and low functioning are directly related to a person's usefulness within society.

I’m not advocating for the HF / LF terms but this is blatantly untrue as well. My twins are low functioning because they can’t communicate (verbally or otherwise), still require nappies, can’t use cutlery, etc. Has bugger all to do with usefulness and is about how well they can function. I don’t think many people who are autistic and educated, working etc no matter what difficulties they have would want to trade places with someone who cannot communicate or use a toilet.

Earlier today, after doing nothing all day but watching a couple of videos obsessively and having meltdowns, he sat on my knee and tried to guide my hands to actions for a song. Except what he was making my hands do bore no relation to any song I could think of. It’s all he wanted from me through the entire day and I have no bloody clue what he wanted. It’s absolutely awful for him not to be able to tell me what he wants.

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

We also use ICD 10 in this country which lists Asperger's so it is still given as a diagnosis. The clinic I recieved my diagnosis from uses both DSM and ICD.

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

And why would having both autism and severe learning needs mean that a school for children with only severe LDs is appropriate? I am not surprised you went for tribunal. 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".

Interesting to see how those people using "with autism" instead of "autistic" are also generally the ones supporting the linear model, high v low-functioning etc

I describe myself 'autistic' and refer to 'my autism', but refer to others as 'people with autism/with autism', while rejecting the 'high/low' terminology. It's a conscious choice, because as I 've explained I believe in the right of the individual to take ownership of terms and self-describe as they see fit, but to me using the term 'autistic' to describe others is no different to referring to someone as 'a wheelchair user' or 'a schizophrenic'. It defines the individual by the physical item or their illness, so out of politeness I prefer to always describe as 'a person who uses a wheelchair', 'a person with a diagnosis of schizophrenia', 'a person with autism' etc.

It's pedantic, I know, but as someone who advocates for people with mental health diagnoses I believe it's essential to emphasise the individual and not the diagnosis, regardless of how I choose to refer to myself.

I don't know if this offers any sort of insight, but it's not really anything to do with the reason why I don't like 'high/low functioning', because I agree that labels are absolutely necessary as descriptors, I just don't agree that 'H/LF' is particularly useful in the context of autism.

@Amiable

Interesting to see how those people using "with autism" instead of "autistic" are also generally the ones supporting the linear model, high v low-functioning etc.

I am NT but DD is waiting for assessment. She had 2 therapists and a psychiatrist say they believe she is, but they are not the right sort of therapists and psychiatrist to diagnose her

DD is 14. She has extreme anxiety, depression, sensory issues, extreme mood swings, social difficulties, executive disfunction.... but she is verbal, articulate, intelligent, has "socially-acceptable" stims and can act the part of a together young woman like nobody's business.

She has been masking for so long sometimes she doesn't even know who she is.

The wheel diagram is helpful, as to call her "high functioning" totally disregards all the areas that she struggles massively with. Or do those things not matter because they are hidden? I have been told she is not "disabled" enough to be a priority for the support she needs, as she gets good marks when she is in school... despite her attendance actually only being 40%.

The terms high and low functioning are directly related to a person's usefulness within society. A better description might be "has high or low support needs" - still short and snappy without the ableist overtones of a "functioning" label.

I say with autism because I view autism as a disability that I would remove from my son in a heartbeat. It isn't a super power or a part of his character, if is in impairment that we fight against. He is much more than autistic and I dont want that to define him.

I agree with the pp that there maybe an element of theory of mind or lack of it involved.

Autism isn't a mental health problem. Mental health problems are separate. You dont need autism to have mh needs. Other aspects of life impact mh not just autism. If someone has mh needs that could be for a million other reasons.

Communication issues are part of the dx of autism, I would sat that autism is a learning disability because of this. Severe mental impairment is the term used by the dla, you dont need a low iq but to show impact on social functioning. Severe autism comes in this category. I hate the term smi by the way.

I would genuinely be happy for my son to be high functioning. It's a million miles from where he is.

It's pedantic, I know, but as someone who advocates for people with mental health diagnoses I believe it's essential to emphasise the individual and not the diagnosis, regardless of how I choose to refer to myself.

I think the majority of the outspoken autistic community prefer to be referred to as autistic, as it is a key part of who they are (rather than "with autism" sounding like an accessory). So if you wanted to, you could say autistic and then wait for any potential correction, as to my knowledge most autistic people don't enjoy "people-first" language IYSWIM.

@sinkGirl this 10000% my son is hyperlexic too. Not formally diagnosed but acknowledged by professionals involved. He moved on to other languages including too.

Thankyou @Trinpy, that will be why then.

Following, this is a great explanation op. Thank you.

I think the majority of the outspoken autistic community prefer to be referred to as autistic, as it is a key part of who they are (rather than "with autism" sounding like an accessory). So if you wanted to, you could say autistic and then wait for any potential correction, as to my knowledge most autistic people don't enjoy "people-first" language IYSWIM.

I think you are quite possibly entirely correct about the wider autistic community, however, I don't work with people with autism, and I can assure you that people with mental health diagnoses absolutely do prefer 'people first' language, the majority of them in any case. So yes, I think I'm guilty of transposing one accepted practice from my field into another, but until someone specifically tells me not to, I'll continue to do what I'm most comfortable with.

Believe me, I have no qualms in correcting people who use 'shizophrenic', 'lunatic', 'psychotic' incorrectly, so I'd hope that if I was offending an autistic person or group that they'd soon put me right

@Amiable
I have been told she is not "disabled" enough to be a priority for the support she needs, as she gets good marks when she is in school... despite her attendance actually only being 40%.

I can so relate to this! It's so frustrating and upsetting, isn't it?

In my experience, teachers are pretty good at identifying and addressing learning difficulties, whether or not it occurs with ASD, but they often don't really understand what autism is let alone how it may affect a child's ability to cope with and understand what is expected of them in school. My DS was often given detentions for failing to produce written work he had no idea how to do because his ASD meant he didn't understand the concepts being taught or understood them but didn't know how to communicate his understanding in a written essay. A little bit more understanding from his teachers could have made such a difference. Striving to get more recognition of what autism is and how it affects those without more obvious learning or care needs is not to diminish the greater challenges those people undoubtedly face. It's simply to stress that 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, as the idea of a sliding scale "spectrum" might imply to those with only a superficial understanding of what autism is.

I hear that, DownWithThis and I think potentially the autistic community are the outliers in this context. I personally say anxious person / autistic person / depressed person in relation to myself, but with autism I would specifically say it too for others as that seems to be the general consensus. Just an idea though, yoI'm not the best with social diplomacy so trust your own judgement . Just sharing what I've heard!

*I'm, sorry can't type!

@KihoBebiluPute and @BornOnThe4thJuly

This seems obvious to me too.
Would people not tell a deaf child they were deaf? Just let them muddle along, wondering why they couldn’t understand things, not realising that everyone else could hear?

I hear that, DownWithThis and I think potentially the autistic community are the outliers in this context. I personally say anxious person / autistic person / depressed person in relation to myself, but with autism I would specifically say it too for others as that seems to be the general consensus. Just an idea though, yoI'm not the best with social diplomacy so trust your own judgement grin. Just sharing what I've heard!

What you say absolutely does resonate with me and I'd agree with you about autism. It's a fundamental part of why I'm comfortable self-describing as 'autistic', and I'll frequently use self-deprecating terms in company that I know take it in the correct context. I would never do that in a different setting though, and I do find it interesting that while I'm happy to use 'autistic' as a self-descriptor, and absolutely do believe it's an inherent, core part of who I am, I also suffer from depressions and anxiety, yet I would never refer to my self as 'a depressive', or 'a nervous wreck' etc.

I think it's clear there are reasons why there's a disparity between mental health and autism in this regard, and while I think it's understandable that other people might feel differently, I wouldn't want to be rid of my autism because I don't regard it as an impairment. It's as core a part of who I am as my height, my hair colour, my eye colour, or any other aspect of my personality. I would, if I could, be rid of the anxiety and depression though. That can bugger right off.

I also suffer from depressions and anxiety, yet I would never refer to my self as 'a depressive', or 'a nervous wreck' etc.

Oh god, I would

I hear you though, and I'd agree on not necessarily getting rid of the autism but getting rid of the anxiety and depression. I'd do the same. Anyway, I'll stop preaching to the choir

Amiable have you applied for an EHCNA? And appealed if necessary? Don't let anyone tell you DD needs to be behind academically, you can have an EHCP and be a academically able.

The only criteria for a needs assessment is has or may have SEN, and may need SEN provision to be made via an EHCP. If DD is unable to attend full time due to her ASD she meets those tests.

If DD can't attend school due to her health, including because of her MH, the LA have a statutory duty to provide education whether she has an EHCP or not.