to not understand MNers against neurodiversity

Absolutely - it's such a broad spectrum. I'm a teacher and have helped try and identify and gather evidence for kids with suspected autism and/or ADHD as well as other needs, I do believe teachers understanding the way they work best can really help them in school.

However, I also know adults who have basically diagnosed themselves with autism and/or ADHD and tried to use it to escape any kind of accountability from society. I don't want to go into precise details but literally two adults describing themselves as having both and trying to get diagnoses (literally researching the "right things to say" to try and get a diagnosis) while they had active criminal proceedings against them and thinking charges would be dropped as a result, that the government owed them benefits and housing etc. Really adopting it as a personality trait as well, talking about how it's a "superpower" and they're more creative and interesting than NT people as a result. Also using it to justify behaviour that is plain rude - talking over people, monologuing at length (literal hours) as well as serious eg aggression.

One was extremely performative about it for example seemingly 'blurting out' a comment that was blunt, verging on rude, and then clapping a hand over their mouth going "sorry - autistic!" I just thought come on... I've worked with enough kids and known enough people that were autistic to think the lack of filter isn't something that takes a few seconds to kick in, I've always seen it as just kids/people saying what they thought or not quite getting social cues, which I've never had an issue with.

So anyway those are quite extreme cases but they were people quite close to me so it had a big impact and really rubbed me the wrong way with using it to avoid accountability. I would also believe they could plausibly have autism and/or ADHD but it was the way they'd jumped on it to feel owed something and simultaneously opt out of any responsibility.

I actually know another close person who has been diagnosed autistic and thinks they have ADHD as well - again, I can see some traits of it - but they've got obsessed with trying to get a diagnosis to the point it was basically coming up repeatedly in every conversation, putting all different quirks and traits down to it, trying to diagnose me as well (we're related).

I said if I do have it I honestly don't care tbh because I have systems in place to deal with being forgetful and struggling with time management and focus, to the point where after a childhood of being the scatty, disorganised kid, I've been known at every job as very organised and on the ball. Just with a messy desk I can't seem to keep under control 😂 I have nothing against diagnoses but I really think people need to use them as a means to an end to actually address their issues and behaviours rather than as a way to opt out of accountability.

@PocketSand I know we've locked horns but I didn't mean that your sons needs weren't legitimate or invalid. I was trying to convey the difference in needs and presentation.

By severe autism or profound autism I'm referring to how autism was previously defined or those people who have severe needs in all the ways that autism impacts (I'm aware autism is sometimes described in fluctuating needs depending on person, day, situation, need etc/ not straight line but spider diagram of autism). Ds would just be severe in all of these all the time.

I'd like to see more language and more descriptors used around autism. I feel as though much of the language is censored so you can be left looking for words that don't offend people and then the message is lost.

I think it mirrors the trans debate in a lot of ways - numbers have gone up in recent years, so it makes people suspect that:
a) there might be a social contagion element to it
b) parents could be "diagnosis shopping"
Not saying any of this is true for the majority of cases, but I think these are the suspicions that people have.

Fuck I can tell you are not a wheelchair user and have zero understanding of just how hard it is to get out and about as a wheelchair user.
Most people you see using scooters can walk, they struggle with fatigue. If you can not walk, lots of places are not accessible.

My sons anxiety is is not temporary or
a result from life circumstances. It has been severely life effecting for over 15 years and is part of is autism presentation. It's why he can't work or live independently and needs full time care. It is a need. I don't want to deny others needs. I just want my son's needs to be accepted as legitimate.

And that's alright with you? Disabled people staying home out of sight? That's a bit 1950s isn't it?

What about the rest of the world making some allowances for people who have different needs?

Thankfully, society these days is much better than it was and it's possible to get adjustments - such as ramps for wheelchair users and systems to help autistic people avoid standing in queues, for example.

@Frowningprovidence I totally agree. I mean you get diagnosed with cancer, but they state the type. And most people know that although there are similarities, there can also be vast differences between different types of cancer.

I think the apples and oranges thing is true.

At the moment the diagnosis feels a bit like people are being diagnosed as tree fruit (the neurotypicals are nuts, obviously)

But the reality is apples, oranges and plums need different things to thrive and survive and they look quite different.

I'm ok with an umbrella diagnosis, but I do think there must be a way to make it more helpful to know what support to put in place what the potential potential outcomes are.

1 in 100 of all children. With over 10s it is 3 in 100. It takes time to get a diagnosis.

@PocketSand I replied as you must have replied too, I'm sorry my post is strongly worded. It is crap for all of us.

My point is the diagnosis is meaningless i have a tough life as do you our children have very different but serious needs but it's like Trying to compare a giraffe with a rabbit.

What a ridiculous comment only 1 in a 100 children are diagnosed with autism. It’s night on impossible to get one and it is most certainly in no way “normal” to be on the spectrum.

@PocketSand you're comparing apples and oranges though that's the point.

I imagine it's worse than heartbreaking but in the same way I can only imagine your situation you can only imagine mine. Your child may (hopefully) be in this situation for a period of his life and you can hope that with the correct support he will come through the other side. For parents like me that will never happen. You will never know what that is like.

As an aside I do know what it is like to have to watch someone for their safety all the time because they could hurt themselves.

Yeah sorry for competing / it's crap for you and it's crap for me - no point comparing the crap.

I get no respite. I have been 24/7 carer for over a decade now and I am burnt out.

Yep my son got the diagnosis at three we were pushed towards special school ( which in hindsight was the correct decision) and the first time I applied for DLA he got a 13 year award

I mean an adult that can not be left alone as they are not safe to leave alone. This is the case with adults with profound autism. They need constant supervision.

@x2boys I completely agree the autism diagnosis has lost all meaning as it represents so many different presentations, it's sort of become normal to be on the spectrum I can't imagine ever fighting for a diagnosis or spending thousands of pounds on one as some people do.

Sorry @Perzival I don't agree. It is always a mixed blessing you don't have to fight.

Yes DS2 was late diagnosed but selectively mute from 6 years old. Tribunal ordered specialist school but it failed. He was actively suicidal for years. Do you know what it is like to be on suicide watch for your own child for years?

I know many families that provide this level of care, it's awful. That is the reality though, some peoples autism is that severe and is a lot more than social needs. We will do it until we physically can't. We get four hours respite during term time and more but not enough during holidays. Ds is provided with 2 pa's to take him out as that is what the pa's require for safeguarding. Family/ parent carers have to manage anyway they can. Ds requires constant supervision at all times that he is awake. This is part of the dla criteria for smi.

Autism can be completely debilitating for some people and is a very serious disability. No other group of people who are so disabled have to contend with their dx being questioned or watered down to accomodate people who see their disability as a difference to be embraced.

Indeed children like yours and mine, are not even in that same ball park
Tbh I wouldn't care if my son lost the autism diagnosis ad it's completely meaningless
He's severely disabled, non verbal will never live independently, cognitively around 2/3 years of age at fourteen.

Whether the needs are medical or social it is simply not possible for one person to be always present. If a DC needs 24 hour supervision the state has to supply. Family carers cannot supply this level of care.

But family carers do what ever try can and then a little bit more to keep their loved ones at home even if their working their arses off.

@PocketSand some parents don't have the maybes as it's a taken eg my ds had high dla care from two years old and high dla mobility from three years old. This is awarded until he has to transfer to pip and I imagine he will just get both at high rate. This is without fighting, tribunal or reconsideration etc. He had a statement (prior to ehcp which he now has) at three years old and was diagnosed at two after a wait he shouldn't have had. I would say he has severe/profound autism. University will never be on the cards or work- this isn't a maybe, it's a very sad guarantee. I wish there was question over whether or not because that would mean a better prognosis.

His needs are vastly different to those who have severe anxiety or mental health needs as well as their autism.

The change in discussion around severity is ongoing with the general consensus that those with profound needs should be separated from those with lesser autism needs. See links above.

@CandyMaker do you mean an adult that can't be left alone due to medical needs?

I understand that a lot of posters have DC at school and are fixated on this stage.

Mostly parents of NT kids. Most will be OK with minimal support.

Parents of ND kids are in a much more precarious position. Maybe they will be OK. Maybe they will crash and burn. Maybe they'll get an ECHP. Maybe they'll get special school. Maybe they'll get DLA/PIP etc. it's never ending. Even if they get to uni it's all about DSA. And then will they get a job when they graduate?

And there is so much parental input at each stage.

@PocketSand what do you mean rethink the level of severity.
There is a difference caring for an adult who can never be left alone. It is very restricting.