To find this view re autism frustrating

Yes, I feel much the same at the moment after some intense meltdowns in public from my almost 12 year old that doesn't look like he has a disability and we are all then judged massively. It's wearing after so long and I can't just pick him up and carry him somewhere these days.

Every autism report is different according to the individual. You can’t be specific and autistic people don’t fit into boxes! Those that are non verbal can vary hugely as can those who are verbal, those with intellectual difficulties can vary hugely,ditto those without, care needs can change throughout life….

And the ability to perceive things in radically different ways that transformed understandings of physics.

Yes I wish my son wasn't autistic. Not bothered if that offends. I have don't have much excitement about him starting school with a smattering of words and not toilet trained and way behind his peers.

Not a gift, not a superpower but there is a school of thought that believes Einstein would have met the diagnostic criteria had it existed then. He didn't speak til 4, preferred to be alone and disliked social norms, he refused to wear sock for example. He also had echolalia as a young child and, of course, his intense focus on complex physics.

Well exactly.
That's why it's important that any diagnosis is coherent, meaningful and specific.
To me "autism" has become so expansive an umbrella that it's lost that. That's why I'm in favour of splitting the diagnosis. It's not about who has more severe needs, it's that the needs and underlying condition seem to me to be completely different in nature.

Diagnosis gives answers and more info for carers, sufferers and professionals.

My dc have significant needs and I couldn’t care less that they have the same diagnosis with others who will also be significant to reach the threshold but are different. Why would I? They aren’t going to take away what they get.Any support is given on need not diagnosis.

Then why bother with any diagnosis? Everyone is just given the label of "additional needs".

Splitting it would be impossible and there would be zero need. My dc have significant needs and I couldn’t care less that they have the same diagnosis with others who will also be significant to reach the threshold but are different. Why would I? They aren’t going to take away what they get.Any support is given on need not diagnosis. Different needs get different support. The diagnosis wait lists are insane as it is and I’d love to see professionals try to allocate boxes accurately. There would be endless wrangling between patients, cares and professionals re accuracy. Even within boxes there will be huge differences as each autistic person is unique.

I totally agree about the harms of stereotyping and putting people in boxes, every child is different and should received individualised support. I'm not at all keen on the governments new "packages" proposal.

But for me, this conversation is really about the accuracy and coherence of the underlying condition itself. I struggle to see how a highly articulate, socially awkward, anxious teenager who is able to mask has the same underlying condition as a child who has profound difficulties understanding language and functioning in the world in basic ways. I don’t see one as simply a “milder” version of the other—they seem to me to be fundamentally different conditions.

I know one suggestion is to distinguish between autism and autism with intellectual disability, but someone earlier explained really well why that doesn’t fully resolve the issue. It risks reducing profound autism to intellectual disability, when the two aren’t necessarily the same. Some children who would be described as profoundly autistic may still have significant—even exceptional—cognitive abilities, but they can’t reliably demonstrate them through conventional assessment or access education in the usual way.
I have a friend whose son is like that. He taught himself to read Chinese, yet he can’t cope in mainstream school because he can’t access or engage with the curriculum in the way it’s delivered. He's non speaking and can't follow basic instructions. That’s very different from simply having an intellectual disability

How do you separate it though? What are these neat little boxes?

If we try to shoehorn people into ever decreasing boxes we aren’t going to help them. We are going to end up with more stereotypes, more stigmatising and more people hate keeping resources than we already have now.

I have worked with so many people with autism, I have a child with autism who will need life long care. All of those children are still individuals with individual needs and personalities. Yet I have still experienced people trying to lump things together based on the diagnosis - I have seen professional reports which are basically just copy and paste because it’s what they think works for that box but it doesn’t work for the child. Instead of trying to make those boxes smaller we need to look at the individuals more and what they need to help them thrive in the best way for them.

It’s not about "knowing more" about an individual child's needs, it's about whether the diagnosis is coherent. I struggle to see how a child who can’t understand language and is non-speaking has the same underlying condition as a child whose main challenges are masking and anxiety. My child couldn't "mask" because she wouldn't be capable of that. They seem like fundamentally different presentations to me, even if they’re currently given the same diagnosis.

And that’s it in a nutshell isn’t it. Autism is not a gift. I’m diagnosed as autistic with inattentive ADD, I am able to hold down a job, attended mainstream school in the 70s/80s but struggled throughout childhood socially, had meltdowns etc. It has had a profound impact on me as an adult and I was diagnosed aged 60. One of the first things I found online was an article which started with “congratulations ” which gave me the rage .

This is totally different to my autistic son who at 23 has never had a job, is socially isolated and needed special education. We are looking at a specialist provision just now which would give him one day a week of mixing with others at £100 a day which is all his PIP, any extra would need to come from Direct Payments

He is verbal but is significantly disabled by his autism, I am not so much.

However a friend has two non verbal autistic adult children who are indeed profoundly disabled but cannot verbalise that.

We should never have removed the Asperger’s label which is where I feel I sit, I still have significant difficulties and it’s no bloody gift.

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.