To find this view re autism frustrating

I have a friend who has autistic kids, all impacted to different degrees. She doesn’t want there to be a different diagnosis for them. Anyone that need t9 know more than ‘they have autism’ such as medical professionals, educational settings etc will have access to their reports, needs and recommendations. A random person doesn’t need to know more by splitting the diagnosis.

I'm in favour of splitting the diagnosis . My child has significant differences and I find it frustrating that her diagnosis is shared with others who don't seem to have the same sorts of challenges at all. I just think it's unhelpful.

However I'm not sure if "profound autism" itself as a term is very well defined? It seems to mainly be used to describe autistic people who have concurring severe intellectual disability, but as a pp pointed out upthread , someone can be profoundly disabled by autism without necessarily being intellectually disabled in a simple way.

I just think there's a huge amount of work needed all around clarifying and defining terms and what the different conditions actually are.

Well the truth is "normal" is sort of a spectrum too in that some people are more socially capable than others, some are brighter than others.

I am NT but there are some NT people whose lives look more miserable to me than some very capable autistic people, so I see where she is coming from.

I couldn't live a life with excitement being what's on telly, pub at the weekends. I'd rather be a boffin in a lab with a nerd community some of whom missed social cues (not that I would be qualified for a lab job!)

I have had this. I do not dispute those with autism can be gifted. However, when women say autism is a gift I want to ask for whom? Is it a gift for the child or for the adult who does not wish to raise an independent as who will be expected to leave them and carve out their own independent existence in the world? 🤷‍♀️

Well yes.

I was told by a tutor to ask my case study participants whether they wanted to be referred to as Autistic or as having Autism (this is what the National Autistic Society suggests). Oh how I laughed (internally). I did ask my most advanced communicator - she looked at me witheringly, told me to use her first name and changed the subject to monologue about her special interest...

This sounds like a good idea.

Ironically it's also going full circle - autism was originally a description of a symptom or presentation (a symptom of schizophrenia originally).

Kind of fitting as preferred language has already also come full circle - waying someone "was" a condition used to be considered stigmatising, disrespectful and reductive (Autistic person) and "person first" language (person who has Autism) was "correct", but then person first language was deemed to be pathologising because of the grammatical parallels to illness (has cancer) and identity first language was preferred (Autistic person...)

I definitely think there is more than one Autism, as there is more than one epilepsy, more than one diabetes - umbrella terms are useful up to a point but need sub categories before they cover too many wildly different conditions with just some elements in common. It's a complaint many type 1 diabetes sufferers share, but most type two diabetes sufferers are uninterested in...

People can say that they are profoundly disabled by their Autism

Ironically those who are can’t.

There is currently an explosion in identification of genetic conditions. Those with more markers are easier to identify because they have more markers. Conditions are now named with the genetic cause l. They are no longer named after doctors who describe them - that stopped about ten years ago. But there is nothing intrinsically different between autism as part of an identified genetic condition and autism as part of an unidentified genetic condition. One is not more ‘true autism’ than the other. If we are excluding genetic conditions from autism then surely we are doing what I think we should be doing - stopping grouping disparate conditions by just one symptom of that condition. This should mean ‘autism’ should no longer feature as a separate diagnosis in DSM and ICD but rather as a symptom of other diagnoses. ‘Profound autism’ would then be a group of different conditions.

People can say that they are profoundly disabled by their Autism, but saying it about someone else is generally met with disapproval - it's more acceptable to talk about how Autism affects quality of life, but generally "profoundly disabled by Autism" is met with social model of disability shut downs - she is Autistic but she's disabled by society...
This makes talking about severity difficult!

In a professional context you can list objective indicators of functioning, but interdisciplinary discussion and informal conversation is really impeded by not being able to say what is clear from observing an individual for a day- some individuals have every Autistic trait atvthe highest level of severity and that actually masks the fact that they are less cognitively impaired in a traditional sense than their diagnosis suggests.

Bogdashina argued that fragmented sensory processing and mono processing due to Autism actually impedes learning to such a degree that for the most severely affected people Autism actually causes learning disabilities rather than co-occurring. Temple Grandin also suggested that Autistic sensory processing differences impedes learning, mimicing or causing learning disabilities for some Autistic people.

’autistic person’ seems to be the loud demand of online communities of mostly adult diagnosed individuals who make it their whole identity. Conversely all the adults I know who were diagnosed as a child and are now just getting on with living their lives prefer ‘person with autism’ as they don’t consider it to be their whole identity or the most important thing about them.

A bit awkward and likes making lists? The fuck?

People moan at others not understanding but then say shit like this.

Is the autism troll still on mumsnet? They were around for ages.

Its pretty widely accepted that all Autism has a genetic component, but ideopathic Autism probably has scores of genetic markers rather than one single easily identified chromosomal deletion/ mutation/ disorder/difference.

I think that those families most affected by profound autism seem to be in favour of the term, and in splitting the diagnosis. That’s my understanding of it anyway, but I’m open to correction. My impression was those opposed to it generally have a different type of autism?

I remember being scolded on here once or twice because I said DS ‘had autism’ rather than saying he ‘was autistic’. I’m not a fan of policing people’s language, especially when they’re talking about their own families! Any ‘consensus’ that has been reached by the autistic community isn’t really a consensus imho, as many people either haven’t been asked for their opinions, or are not in a position to give them. And sometimes the opinions of parents or carers ‘don’t count’, which is clearly a nonsense.

As Autism can only be diagnosed from observation of and reported behaviour, if he meets the criteria he is Autistic surely.

I know Rhetts is an exception because its regressive, and I think I unconsciously assumed Angleman and FG were because of the characteristic social traits in both are different from Autism, but as I said that should apply to Down Syndrome in that case, but a Duel diagnosis of Down Syndrome and Autism is not uncommon.

I'm pretty sure an Angleman diagnosis rules out an Autism diagnosis - I wonder why now

An ADHD diagnosis used to rule out an Autism diagnosis and vice versa, so quite likely it'll change again with the next iteration of the ICD and DSM. Aside from genetic testing Autism diagnosis is not definitively objective however many questionnaires, coded behavioural observation scores, interviews etc.

Which actually reminds me that standard assessment methods like the ADOS-2 produce severity scores - I wonder why scores over the threshold= Autism diagnosis but discussing severity is absolutely taboo...

My pet hate is that with only one diagnosis available and the policing of the language which would allow discussion of the fact that some individuals are more disabled by their Autism than others. Those whose Autism we are told we may not quantify as severe or profound, are dismissed and made invisible by the flippant dismissal that their issues are solely down to the with/ without learning disabilities qualifier. "Isn't that just the learning disabilities, not Autism?" Prompt the head tilters who think they themselves are probably on the spectrum because they don't like to turn the camera on for Teams meetings ...

Wether he was truely autistic or wether it was his genetic condtion that made him appear autistc

Are they only ‘truely autistic’ if no genetic cause is found? Or is it only when they have a genetic cause but no comorbidities? Does this include ADHD? Perhaps then no one is ‘truely autistic’ but rather they have an unidentified genetic condition?

I have ADHD but not autism but I'm interested in the debate around language going on in the autism community. I have some understanding why some believe terms like "profound autism" should not be used although I can't quite decide what my own position would be on the matter. Are you allowed to say that someone has autism and is profoundly disabled by it or is that seen as the same thing as saying someone has profound autism?

Yes, I see your point.

I totally agree that lots of genetic syndromes are massively correlated with Autism - Fragile x, Phelan-McDeemid, Tuberous Sclerosis, Pitt Hopkins, ... but then Angleman and Rhetts are explicitly differential diagnoses despite huge symptomatic similarities. The stereotypically affable personality and distinctive physical traits of FG made me assume it's also a differential diagnosis, but perhaps not - the same could be said for Downs, and I've worked with multiple individuals with dual Down Syndrome - Autism diagnoses.

In really glad for you. The scope of autism and the effects on those around those diagnosed, is huge though.

My friend has an extremely affected autistic child. The child's quality of life is very poor and is they are in deep, unreachable distress much if the time. My friend has had a breakdown, and their spouse is also suffering with mental health problems.

They love their child deeply, but the condition has broken all three of them. And there's no light at the end of the tunnel. Just fear for his future.

Wether he was truely autistic or wether it was his genetic condtion that made him appear autistc i dont know but he certainly presented as autistic
And Raymond in the film very much presented as autistic
My son has 16p13.11 microdeltion syndrome this is apparently the underlying cause of his autsim or is it
Maybe its just that it makes him present as autistic
In his case it doesnt really matter hes treated as severly/ proundly autistic because thats how he presents

But this is the whole issue. Many with FG syndrome are diagnosed as autistic when in reality autism-type symptoms are part of FG syndrome. This is the case with hundreds, possibly thousands, of other syndrome including fragile x, Down’s syndrome, ED syndrome, FASD…. Many of these syndromes, mostly caused by genetic conditions, are only now being identified. Once identified they can give a much better picture of the individual, including associated physical symptoms in many cases, than saying ‘autism comorbid with…’. Though the loud online autism community did their best to try and disrupt work identifying these genetic syndromes.

Kim Peek wasn't Autistic, he had FG syndrome (which most significantly includes structural neurological abnormalities, but lots of other symptoms completely distinct from Autism).

So school testing not standardised cognitive testing? School tests will depend heavily on ability to access learning at school, support for tests, how good the school is at teaching for those tests, when her birthday is etc. Standardised cognitive testing should rule out such confounding. Nonetheless being mostly top of your class is a great place to be.

I hope the school holidays are going ok
My son has a package of respite care for which im very greatful
Hes having 3 days a week in special needs holiday club and he gets four overnight s a month which is working out a roughly once a week
But he has been displaying very challenging behaviour at times and i was asked to pick him up one evening
So its not the restful time it should be as im always worried i will get a phone call.

Her test scores as against her peers based on nationalised tests over the last 8 years.

Your concern is misplaced because at no point have I said that all autistic children are always a misfortune. Clearly not, with the breadth of diagnostic criteria we have now.

I speak for the families I know who live in the seventh circle of hell because of autism.

You are rankled by what I’ve said because your child is autistic. But I am not speaking about you or your child.