Those with severe autism need their own diagnosis

[Cubic]

Ok so, I'm being brave and putting my head above the wall. This is a long one as it's an emotive topic.

The autism diagnosis changed in the dsm (American diagnostic manual) in 2013, than hit the UK too and our diagnosis changed to include people who would have been diagnosed previously with other conditions; Aspergers, childhood disingenerative dissorder, retts and pdd nos. Aspergers had links to the nazis, there were concerns that the other conditions wasn't taken as being as serious/ a disability, funding wasn't aimed at those who were seen as "higher functioning".

The dsm gave levels 1-3 depending on support needs. Some people fluctuate and some just stay at level 3 all the time.

Until this point autism was seen as a severe disability. Those with the diagnosis were seen as being disabled, this wasn't questioned.

The diagnosis changes linked with the neurodisability movement and self diagnosis has meant that those with the most severe impairments are now not as catered for. Many of those with the most needs lack the ability to communicate and therefore can't advocate for themselves. Their carers are exhausted too.

Those who would be seen as more able can suffer with severe mental health issues that aren't always treated due to them having the autism diagnosis.

Profound autism is being tabled as a way to seperate the diagnosis so that those who have extremely limited communication, low iq and require constant life long care etc due to their autism not mental health can have seperate diagnosis.

This is opposed by many of those who are more able. One of the reasons given is that their autism would be seen as "mild autism" and support maybe withdrawn.

I support the profound autism diagnosis. I think there is a world of difference between those maybe diagnosed later in life, who work and have family and friends to those who require support in every area of their life for their full life (all the time, not fluctuating), with no communication who can't access our world.

This doesn't mean I don't recognise the needs of those who aren't profound.

IABU for support a seperate diagnosid
IANBU for wanting a seperate diagnosis for those with severe/ profound autism.

• knowing how these threads can go, I may not reply to every question, statement or post.

** I'm aware that terms like high/ low functioning aren't supported by many of those who are able to communicate well.

You actually were vile to me. I saw you be vile to others on the thread as well, I just can't be bothered to go back and get examples so I'll use myself.

I'm not crying into my pillow over it but look back at how you accused me of considering myself superior. I always make myself try to read good intentions into things and I also appreciate you may struggle with communicating yourself but objectively it was a vile thing to say to someone. If you weren't intending to be vile, you will want to read what you said and consider how to avoid coming across in that way in the future.

No superpower required. Just simple deduction from the initial post and subsequent ones. The possibility of it being a genuine attempt to engage was eliminated very clearly by the responses to those genuinely answering the question with facts and science so the only rational conclusion remaining about the motives for it are very easy to draw: unless we were to conclude that someone posting such irrational things that science has already disproved is just totally insane (which would be unkind and there’s no particular evidence to support that conclusion, and it’s less likely than the alternative….) the only other conceivable reason for someone to do this and then support the appalling behaviour of other posters in response to it that they do know that what they are saying is factually wrong but are trying to use strangers on the internet as emotional punchbag, even though they know that these particular people are also very vulnerable.

If we apply Occam’s Razor and assume that there is no actual insanity involved as that is less likely, then in the absence of any other plausible or credible explanation for the behaviour (denying scientific fact, supporting appalling behaviour towards vulnerable people and online bullying, continuing to assert things even when it’s been pointed out the science has disproved them already) the latter scenario is very likely the case.

How unpleasant.

I think we've all been guilty of similar on this thread including yourself who had to edit a post aimed at me on reflection but none the less, we were having a productive at times (i thought debate). That shouldn't be shut down and some of the name calling, shouting and various insults in the last few hours were not only uncalled for but were everything the poster claimed they were against.

I am really sad that this whole debate has turned into a few insults being thrown around.

To summarise

I think that people recognise that some people have profound needs as opposed to profound ASD due to other issues be it learning difficulties / genetic abnormalities/ other needs eg speech, mental health ( there is a link to things like schizophrenia) and physical issue etc

So people do acknowledge that some people have a really hard time with kids who are non verbal / incontinent etc

others still want the PA label

however it is accepted I think that needs can vary depending on how much of the above someone has

However as far as ASD pure or per se is concerned it’s a spectrum disorder so impacts across the chart in different places with different outcomes/ needs. there is no real profound ASD more ASD combined with other stuff??? Whereas others say there is profound ASD

However others argue that the upshot is that someone who has ASD with normal intelligence etc but has heavily struggled might develop eg an eating disorder or have a breakdown from their issues. On a day to day basis they are under more strain than a NT person so that leads to eg potential burn out etc. So they get it tough.

My only comment remains that I would really like to understand more the complexities of all this. I do feel disappointed that we seem no further forward - everyone wants people’s needs recognised and acknowledged but for me it would be nice to have some form of cure or prevention. If someone cold do some gene therapy and cure people how great would that be?

I fear that for the new ASD enquiry happening as we speak the data will be such a mess that they will not extrapolate anything decent. The whole landscape seem a mess.

I wonder how they retain the data to do any meaningful research eg do they keep records of SALT issues and motor issues etc

Nope. You don’t get to deflect it back at posters who haven’t done anything of the like to you. That’s unacceptable.

Why don’t you just apologise for your behaviour and that of your little friends and admit that it was disgraceful rather than trying to pretend that when after two days of bullying autistic posters have stood up to you (and the poster you are talking to hasn’t said anything remotely harsh to anybody AT ALL as far as I have seen) falsely pretending everyone else is just as bad as you?

They are not, and have not been. I think if you read the thread back from the beginning you will be ashamed of some of the posts from posters you’ve expressed support for (and if you aren’t, then there’s something very seriously wrong with your moral compass).

Honestly, the most unpleasant, abusive and unhelpful poster on this thread is you. You've tried bullying and manipulation to shut down debate and now that hasn't worked (i will start another thread to follow this and one after that if needed).

You claim scientific knowledge but offer none, you ignore the journal posts (two from me alone) that have been made and can't apply real world context to tje current diagnostic process and this debate.

Interestingly, a great many posters have disagreed with you on this.

You are right, there’s absolutely no value in it. I’m going to do some “planned ignoring” I think.

I do take issue with being called a “little” friend, I’m absolutely massive actually!

And i'm the one with a "clique" and "little friends"?

I see your point, but I can only comment on what I've seen over the past 7-8 of attending the special unit. Where, in the most severe cases, progress over time in any sort of measurable point, is pretty close to zero.

I've nothing to apologise for and where I have on this thread and where I have thought I may have hurt someone unintentionally I have. Unlike you who is just bullying and insulting. Please go get beamed up now.

I agree I haven't been perfect. I'm not claiming that I have been though. Sometimes I haven't come across as I've meant to. But I haven't posted anything I have intended to be mean or vile and I've tried my best to change language/clarify when I think it might have come across badly, as you acknowledge. I am perfectly happy to have things I've said that came across like that pointed out to me and I will reflect on how to avoid that happening in the future.

@Elbone claimed not to have been vile to anyone. Objectively the language she used against me was. I am not saying that her intention was to be vile but in that situation I would expect her to want to understand that her posts were coming across in a different way.

You have hurt quite a few people intentionally and with no valid justification whatsoever and not apologised. You have a great deal to apologise for. Perhaps you should go and read some of the studies by neuroscientists and geneticists as suggested and then come back to post further after you’ve done so.

I don't think that's unreasonable. I worked in a home for young people with severe autism - non-verbal, learning impaired (or I think in many cases with a way of communicating other people cannot understand), very challenging behaviours, and who needed 24/7 care. It is a whole world away from the many other people I know who are autistic, but have families, jobs etc. I'm inclined to agree we need to separate the two somehow.

Because this conflation means you also get idiots like Trump and RFK Jnr going 'Oh the increase in autism is terrible because it's an awful condition that ruins people's lives' although many people with it, while facing challenges, have a life that is basically fine thanks, especially with diagnosis.

I do wonder if we might gradually move towards a model of understanding people without the most severe symptoms and behaviour of both autism and ADHD as just existing somewhere on a scale of neurodiversity that many people are on, and think separately about non-verbal (or limited verbal), high-needs individuals who are autistic.

Numerous posters have noted how vile her posts have been, not just you. There have been multiple comments about it from different posters pointing it out. Yet the OP sent messages supporting this poster. The mind boggles.

You did not deserve to be spoken to in that way nor did others. It is not acceptable.

I’d appreciate it if you could find the quotes where I insulted you. Where I was vile to you.

And yet none have been able to quote anything…

I could say the same to you and to a few other posters who I feel have deliberatly targeted me on this thread at times? I would need to go back and check (i cba tbh) but I know yours is one of the main names of posters who have been opposed to my view. I think we've all been engaged and have to give everyone the benefit of doubt to any posts. Vile is a strong word. I think given the subject and how emotive it is, until today and for the most part it was quite a decent and for the main part a productive thread.

Perhaps you should live out your teacher role playing somewhere else, i'm not into it.

😂😂😂
I wish I was your little friend. You’re very funny

She wrote that your child is less vulnerable because s/he can’t be groomed into committing crimes.

Me too

Are there any other conditions besides autism where it’s considered so controversial and even offensive to discuss different levels of severity? We already use scales for many other disabilities: learning disabilities are categorised as mild, moderate, or severe; cerebral palsy uses levels 1–5 and is categorised into different types as well; hearing impairments range from mild to profound, with similar scales for visual impairments and many other conditions.
Why can’t we do similar with autism? In the past, there were many different diagnoses like Asperger’s, Kanner’s, PDD, and Childhood Disintegrative Disorder. With modern scientific advances we could probably categorise it much more accurately. Surely more clarity and better distinctions could only be a good thing? It could turn out that there are certain interventions that are highly effective for one 'type' of autism but completely unhelpful for another.

I guessed it was something like that.

@Cubic / @Elbone

Thanks! It’s really just tired hysteria mixed with coping mechanisms for my feral child. But I’m pleased it works!