To think the terms "neuro diverse" and "neuro typical" will be short lived.

[theplatformedge]

Diversity means "a range of many people or things that are very different from each other" (Oxford learner's dictionary), so the idea that a minority of people are "neuro diverse" and everyone else is "neuro typical" is not only semantically illogical, but also potentially offensive.

We're all different. Some people have traits that make life more difficult for them than others, whether it be ASD, ADHD or a range of other conditions, with spectrums of severity. Telling people that you're neuro-diverse is so vague as to be meaningless, and telling other people they are nero-typical when you have no idea what they're feeling inside is insensitive. Some people get a formal diagnosis for their symptoms, some people self-diagnose and others don't recognise it in themselves. Nobody knows how many people are living with these traits across the population, but the massive increase in diagnostics suggests they're a lot more common than anyone ever thought in the past, and therefore gradually becoming very "typical".

Discuss! 🙂

I feckin hate 'discuss'

@AloeNora please do not pronounce on other disabilities. You are totally wrong.

Indeed this is m son although we did manage to toilet train him was ten
He presents as though he has severe learning disabilities but actually who knows maybe it's because his autism is so profound
Children wit such complex needs ,need their parents to speak foe hen because they can't speak for themselves

“Except the term was absolutely included up until the end of 2021 in the ICD 10. It doesn't matter what you were told, probably by a clinician who used the DSM at the assessment.”

No Ronoi that was not the case.

Try to find anywhere on the nhs website that refers to an Aspergers diagnosis rather than ASD. You’re not going to be dissuaded other than what you believe so you do you.

I was neither rude nor aggressive to you. Plenty of posters on here have agreed with my reply.

I'm not in a profession in which ND matters are discussed either, but as a parent I make sure I am fully informed about something that affects my child. It's not hard nowadays to bring yourself "up to speed". So please don't feel sorry for my family - I recognised the signs of autism in my DD, I pursued a diagnosis for her, and I work hard every day to try and make her life easier, be her advocate, help her understand herself and give her the best foundation to live with her disability.

@x2boys I agree with you. Many who say their autism is not a disability would say your son's difficulties are not to do with his autism. As if they are an expert on someone they have not even met. Makes me so angry.
Whether you call it severe or complex autism such children and adults obviously have a different level of care needs. They can not mask.

For the millionth time, the science around the brain and neurodivergent conditions like ASD is very patchy and still in its infancy in many ways. There simply isn't the certainty in this area that there is with many physical conditions. This doesn't mean that the conditions aren't real and the struggles associated with them aren't real, but we are only really just starting to understand the brain and how ND behaviours are related to this. Developing an accurate diagnostic test for conditions you have limited understanding of is obviously very difficult and currently relies on behavioural tests that are intrinsically less accurate and objective than other tests you can conduct for physical conditions.

In this context, it will of course be controversial to create a binary system where we pretend that people can be definitively ND or NT and nothing in-between. The notion that NT even exists at all is controversial, let alone that everyone must be NT if they don't meet the very specific criteria that is currently favoured for ND conditions. Not to mention that there is no universal definition of which conditions actually fall under the ND banner so who can and can't call themselves ND. The whole concept is obviously deeply flawed and has at its core exclusionary principles. You're in or you're out. If you're in then you can access support and have your needs acknowledged, if you're out then you have a hell of a fight on your hands to be taken seriously.

I think the problem is that as terms are deemed offensive, we lose the language we need to accurately explain the very real differences that exist within an overarching condition.

I read an article recently about a mother favouring the use of the term 'profoundly autistic' to describe her child. Describing her as merely 'autistic' just doesn't cut it when you have people that can function in high power careers with minimal support using this description alongside people that can't talk or go to the toilet. It is helpful for people to be able to use language in a concise and meaningful way to quickly convey the severity of the condition and needs they are actually talking about. This, like many physical disabilities, might fluctuate over time but there still needs to be some, relatively easy way of communicating this.

But when it comes to who needs accommodations and who doesn't of course this is is determined by behavioural tests rather than physical. A blood test isn't going to tell you who needs extra time in their exam or a quieter room to work in. That's always going to be down to the individual's behaviours even if we did develop a diagnostic test.

If you feel you have support needs that aren't being met and you're angry that other people have been able to access accommodations that you would also like - which it sounds like you are - have you taken any practical steps to obtain this support, or even get a diagnosis of your own? Or is this a case of 'I have to struggle so other people should too'?

I'm autistic, one DD is autistic and the other is waiting for diagnosis. We all function "well" in that we're verbal communicators, in mainstream education or professional jobs - societally we're chugging along OK. However, we have various things that we all find challenging, but because we have the cognitive capacity to process these things, develop strategies to mitigate them and generally mask the shit out of the remaining anxiety and overload... our "support needs" in terms of if we had to write a wish list of reasonable adjustments are generally minimal (I think my work adjustments boil down to - "I might have earphones on if it's noisy or I'm particularly overloaded" and "for the love of God can I not have the 5th change in line manager in a year because I'm running low on reserves for processing change without turning into an over anxious wreck").

I may share a diagnosis with someone who has intellectual disabilities, autism and other potential co-morbidities such as ADHD or dyspraxia - but their support needs will be much greater than mine in terms of what they need other people to provide; whatever the system likes to think - we do not function like nice neat tickboxes where "the system says you have autism and you must need this nice easy read document with symbols and pretty pictures instead of words" (which is a personal pet hate of mine since a lot of my work involves developing the bloody easy-reads in the first place) and similar. Basically people are individuals, people may share a diagnosis (which is basically just a checklist of various features they display in the way they process and respond to the world), but they are no more one-size-fits-all than describing "normal" or "typical"... what the fuck is "typical" anyway?!

What does piss me off massively about any discussion on autism (and the articulate section of the autism community in general) is the endless distraction from real issues like discrimination and how we can move to a world which functions better for more people - by fucking arguments over how other people choose to refer to THEIR condition (my autism = if I want to paint it purple, stand it in a corner and call it Dave I can do) and also laying into parents of children who do not communicate verbally and have autism when they dare to advocate for their kids. Yes, not all communication is verbal, and yes, every single individual I meet who does not fully communicate verbally (and I meet a LOT) has their own ways of very very clearly communicating when they're pissed off, or happy, or wanting more chocolate or whatever - but still this communication often needs to be interpreted by someone who knows them very very well - I can write the most superb communication passport in the world, but I will never be able to describe and understand their communication as well as their parents do. I've seen some absolutely vile pile-ons of parents trying to advocate for their autistic children.

Because needs change so frequently. Some days, weeks, months you could be low needs and some times you can be high needs.

It's ignorance of the condition that's so frustrating.

I’m sharing a link to something interesting I read 😐

Nothing to do with the NHS website 

Asperger's WAS included in the ICD 10 and valid as a diagnosis until December 2021.

That is a fact, not a belief.

I think this is probably the crux of the issue for many.

There are very many people with ND traits that wouldn't meet the threshold for a formal diagnosis and yet would benefit greatly from accommodations being made and support being available in specific areas. The problem is that the system relies on the majority being NT and coping with the 'standard' provision to allow the ND/NT model to exist. Accommodations and support are therefore only made available to those with a formal diagnosis and nothing is afforded to everyone else irrespective of the level of need they may have. The fact that the diagnosis is based on incomplete science and an imperfect diagnostic process just adds to the problems of having such a binary system.

My anger isn't on my behalf but on behalf of family members and others that I know. A specific family member did pursue an ASD diagnosis and didn't meet the threshold despite having pretty extreme symptoms in some areas of their life. I simply don't accept that they are NT. I actually see ND traits in most people I know and many suffer to the point where it really impacts their day to day life (anxiety, OCD type behaviour, impulsive behaviour). They wouldn't meet the threshold for a diagnosis but they could definitely do with some support in specific areas and some of they behaviour would be considered incompatible with what people would consider a NT person to be.

For some they don't my son has high needs for every aspect of is daily living his needs won't ever change .

I completely disagree OP. ND just covers a number of diagnoses that anyone might have a combination of. People only talk about NT in terms of ND IME, it's just used to differentiate when you're talking about both sorts of people. If you don't find the terms useful though just don't use them. No one is forcing you to.

It's the same with a lot of terms. Some people don't like the term ASD because they don't see it as a disorder or don't like the term disorder and prefer ASC. I use ASD because it doesn't bother me and it's more widely understood. That doesn't mean that other people have to use it though.

My DS has a diagnosis of Aspergers. I use the term Asperger's all the time because that is his diagnosis. If other people are offended I don't care. No one is calling for BMW to change it's name because of it's association with the Nazis.

I also don't understand the argument that autistic needs change and so everyone should be lumped in under one term - to me there needs to be some variation in an ASD diagnosis. Yes my DS may have varying needs in what he can cope with day to day - but he's never going to be locked in his own world and not be able to communicate at all. He might struggle at university but he's still going to be able to get there. I think lumping everyone in together doesn't help anyone and actually there should be more variation in diagnosis to reflect the diversity, not less. Otherwise people know of one autistic child/person and think they know them all.

Just use the terms that suit you and stop implying that most people are a bit ND when 80-85% of the population are estimated to be NT.

@Jimmyneutronsforehead who do you think that is any different from other disabilities?

@Jimmyneutronsforehead If you have mild arthritis the impact will vary day by day. In cold weather you will struggle more. You will struggle more on some days when you have tasks that are more challenging with your arthritis.
But it will still be mild arthritis.

I agree with you it does both our sons a disservice to lump them together when their needs are so vastly different.

Yes, it's true some people will remain high needs all of their life, but needs will still change for many. It has for me, going from low to high needs and for my son who was very high needs, who now has differing needs in different environments but his support needs have decreased.

Some people will also remain on the lower end of the spectrum for support needs.

There are a lot of factors that go into it, such as other comorbidities, and environmental factors, and no one autistic person is the same as the next.

Things like anxiety, OCD etc aren't ND traits though, they are symptoms which other conditons can also share. I wouldn't say someone with an anxiety order was neurodiverse on that basis, though clearly they have a real condition they need support with. Neurotypical doesn't mean "normal" as such and it doesn't mean someone can't have another mental or physical illness while still being neurotypical.

I absolutely get what people say about ND or autism being umbrella terms, but it's worth considering we use umbrella terms for lots of other conditions as well and it doesn't seem to provoke the same reaction. If I say I'm a cancer patient that's also an umbrella term - cancer isn't one condition, and the effect, impact, prognosis etc varies vastly according to type of cancer and the individual. We talk about people having auto-immune conditions or eating disorders or heart disease or being hard of hearing - all of these are umbrella terms. The actual diagnosis will vary as will the impact on the individual. But we'd never say you shouldn't ever use those terms, we recognise they're useful sometimes. Because being neurodiverse can be invisible I think it gets targeted as do mental illnesses. Just because you can't see someone is struggling doesn't mean they aren't.

That said I do agree workplaces should be vastly more accomodating of individual needs, workstyles etc without the need of a diagnosis. But there's a difference between say having a preference for a quiet space and having a need for one or you simply won't cope.

@Jimmyneutronsforehead that is the same for any disability. Physical disabilities are still described as mild, moderate or severe.

Well, the way I see it is you're either arthritic, or you're not, but you might have lower support needs for your arthritis than other people who have arthritis, and even your needs may change.

You don't get Joe Bloggs telling you "every ones a little bit arthritic though aren't they", or "oh I think I've got arthritis because (insert this very human behaviour here) but we all are a little bit aren't we?"

Because terms like that aren't helpful.

So what you're saying is that you do have arthritis, however you can recognise that on some days, your arthritis affects you more than it does others.

It's very binary as to whether you have the condition or not, but your support needs or how it affects you can operate on a spectrum.

However autism, unlike arthritis, isn't necessarily something that gets worse with age. It can absolutely remain high needs throughout your entire life, but it isn't an inevitability for every one like it is with those with an autoimmune condition, it's a neurodivergence instead.

It might be a helpful way of getting your point across to someone in a shortened and roundabout way that you've got mild arthritis, but the fact is, you've just got arthritis. And those that don't have arthritis, don't.

It made me laugh. OP is here effectively telling people to change their language and ends it by using language everyone hates.

OCD and anxiety are absolutely considered ND conditions under some definitions. This is part of the problem, there isn't a definitive list of conditions that are accepted as ND in the first place. We then can't really define with any real certainty what tips someone from being NT with traits of a ND condition to being considered ND. The diagnosis process isn't accurate enough to do this and isn't really capable of dealing with those suffering greatly with ND traits but don't fit neatly into an accepted diagnosis. It is totally possible and common for someone who doesn't quite meet the threshold for a condition to suffer more with their traits than someone that has been diagnosed with the condition. The binary NT/ND system just has no space for this kind of scenario or any other complexity.

This is all exacerbated by the false certainty that exists around the NT/ND distinction that makes each side suspicious of the other. It's all 'othering' and very black and white when the science is super grey. So whilst I accept that it can be a useful umbrella term to raise visibility etc, I think on balance it does more harm than good.

I agree with you on your last point and the need to identify how necessary each accommodation is at an individual level irrespective of diagnosis. If someone literally cannot focus on an open plan office for example then they should be allowed to work elsewhere whether they have a formal diagnosis of an ND condition or not.