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 One of the reasons given is that their autism would be seen as "mild autism" and support maybe withdrawn.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 can’t possibly have read that, you apparently don’t know science, or autism, or children 😂

I have read it, it links to the Lancet report. You clearly haven't.

You are the one being insulting.

I think it was a joke. Possibly mistimed with the current temperature of the thread. But I think definitely meant with tongue firmly in cheek.

That was sarcasm, if you read my PP you’ll very clearly see that my posts are the polar opposite toward you and others that have children/family with significant need.

Sorry

The joke was at the expense of other posters because they said you didn’t know anything about autism as a parent of a child with profound autism.

There have been some really cruel things directed at you so I can understand how you might have misinterpreted it. X

So sorry, yes I thought you were the other poster. The article needs a membership to read and supports the Lancet.

Don’t apologise
Completely unnecessary

The way that some of the little clique of flies that seem to be attracted to all threads on this topic spoke to autistic posters who were brave enough to post earlier in the thread was not remotedly “respectful”.

I followed the thread for a couple of days before writing anything myself and saw what was happening and it was very upsetting to see the bullying of autistic posters who dared to disagree with your opening post (even though, scientifically, they were absolutely correct and the proposal in the opening post that autism can be divided up into “categories” or “levels” is thoroughly debunked already by scientific and medical research, which was ostensibly what this thread is meant to be about).

I have explained in detail why the scientific research doesn’t support this and in fact, all of the credible research to date indicates that your idea that there is such a thing as “profound autism” is incorrect. These children certainly have far more profound disabilities than someone who “only” has autism, I don’t think you’d find anybody disagreeing with that, or that they have higher care needs or need more funding and support. I feel a great deal of sorrow for thinking what you must go through daily and cannot imagine how hard it is. It’s hard enough having two academically able but autistic children to care for and has destroyed my own health.

BUT: either you are being extremely disingenuous (which your reaction to my posts indicates) or you are trying to take your frustrations out on vulnerable autistic adults just because they don’t also have the other diffculties that your DC has which are NOT because of autism (which is unacceptable, autistic adults who have tried genuinely to engage with your posted question are not your emotional punchbag and not should they be the target for your anger if you actually want things to improve for children likes your DC).

Your are attacking entirely the wrong target here and the proposal in your post that autism should be divided into arbitrary different diagnoses is unscientific and categorically wrong. Saying so is not “ganging up” on the poster who was one of the main ones who was in fact trying to bully others for responding politely and genuinely to the question that YOU posted.

I suggest you reflect on how you approach all of this and read some of the medical research about autism before posting any more embarassing things about it on the internet. Numerous posts here have exposed extreme ignorance about autism and the existing medical knowledge of it which is very concerning given that many of the same posters writing the worst nonsense have also stated that they have autistic children.

I thought it was the other poster. Yes, i agree about the disgusting comments and it isn't that I missed them (with the exception of the one that was edited out). I want this discussion, it needs to be had and probably needs to be had more than just on mumsnet, I chose not to go down the woe is me victim route which is now being used.

Discussion can be had by people who start from differing points. It's helpful.

Declaring yourself a victim because you don't like the subject or don't agree to shut it down is just another form of manipulation and that is what is being played out now.

Some of the language used about parents advocating and discussing their children is appalling.

No need, I’d assumed as much.

Raising our kids is tough, and the assumption that you haven’t spent sleepless nights worrying about them and their future, and trying to find every scrap of information that you can is offensive.

Our son started with facial tics about a month ago, the things I could now tell you about Tourette’s, its presentation, how likely it is/isn't to be comorbid with his existing conditions.

We look at the information that’s available, and then look some more. Try the strategies, buy the wall charts, learn the Makaton. Google things like “why has my autistic child suddenly gone off bread?!” And “does my disabled child have ear ache?!”

I know that and you know that, and no random person on the internet can take that effort away from you.

Completely agree.
They don’t know what it’s like. That’s all ♥️

Yes, I question your intent very much.

Why haven’t you read the multiple medical studies from geneticists and neuroscientists about autism published in recent years so that you understand the latest science about this?

If you had, you would never have posted this thread. Or, could only have done so disingenuously knowing that what you proposed has been very robustly scientifically debunked as nonsense already.

Which is it?

The “disgusting comments” have come entirely from you and your little clique.

Do you have anything at all to say in response to the scientific facts I posted earlier that have been established via multiple neurological studies or brain scans and genetic studies?

Of course not. All you want to do is exchange insults about autistic people with your little friends here. Well, if your child does have autism then I feel very sorry for them that their parent is spending their time seeking out others with the same condition on the internet to insult and belittle. You clearly have a lot of anger at your situation and feel a lot of pain for your child which is understandable but it is NOT acceptable to take this out on other autistic adults and spout pseudo-scientific nonsense about their medical condition online.

Our son has been assessed twice. The first time the psychologist barely listened to us, marked yes to every question and within a 1 hour evaluation gave a positive ASD assessment (which we as parents didn't agree with). We redid it a year later privately and we got ND but not ASD as a result, and that our DS is exceptionally gifted, which is exactly what his father is like. My HD would be a little aspergers-ish back in his day, but exceptionally smart, and fully capable of functioning more or less normally. Doesn't love change, struggled a little socially growing up, but more or less copes. Look, the initial ASD diagnosis got us up and moving as parents, setting up speech and OT and everything to help. Early intervention in general makes a huge difference, I cannot deny that. The second psychologist did say that the new measurements brought in basically make a lot of people who could function very normally classed as autistic, weirdly though our son has no sensory seeking needs which is what I believe was added to the tests. I do think its a bit of a crapshoot based on who does your assessment, and what you are looking to get out of it though.

@ProjectHailMary

If possible, can you point out the insults you’re referring to? I’ll take any name calling, swearing, or even typing in caps which can be interpreted as shouting.

I also would like to understand how someone can “seek out” someone to offend, when in actual fact everyone on this thread is here because they willingly engaged, not because they were dragged here?

"Clique of flies" what an interesting turn of phrase. Yet you think you're behaving beyond reproach?

You may have explained what you believe to be scientific fact but as autism isn't diagnosed via a genetic test, even if it were true it isn't relevant due to the diagnostic orocess and not worthy of stopping a debate.

You want the debate stopped because you don't agree with it. That's not how the world and mumsnet works. You are now bullying and trying to manipulate the debate into being stopped (and not liking be called out for it).

I could if I had chose to thrown your post back at you in reflecting your words but asking you to stop spouting AA guff. I chose not to because you say you are suffering with the content of the thread. Although you seem to be enjoying being a saviour.

I suggest you reflect on the real world and how autism is percieved, researched and diagnosed before you attack and make baseless claims about parents discussing real world problems. I'd also suggesr before you go around calling people ignorant you take a long hard look at your own behaviour.

@ProjectHailMary Sorry, I’m not sure if I’ve misunderstood, but are you saying that autism itself does not vary in severity? That one autistic person can be more severely disabled than another only if they have additional, separate disabilities, but that they cannot be more severely autistic?

You cannot possibly know my motives, unless you have some secret superpower?

I do read an awful lot about autism but I'm also able to recognise that some of the science you talk of is published by agencies and AA's who actively oppose the PA diagnosis. The data set of these articles that usually are openly writtle to debunk also inc a very small population if any of those who would be in the PA diagnosis.

It's hardly scientifically debunked when it's supported by scientists.

@Cubic I think what’s happening here is whilst you quite obviously have done your research, because it doesn’t agree with PP’s views on the matter, it’s somehow the wrong research.

Oh dear! You read one article on pubmed issued from the US (where you have politicians openly stated they think autism is caused by vaccines or whatever other nonsense, which would automatically preclude an autism diagnosis because this would be a separate cause OUTSIDE the autism diagnositic criteria and prove that the cause wasn’t autism) and you think that you now grasp the genetics and neuroscience behind the actual condition?

Do you actually understand what autism is?

These idiots in the US are doing a lot of incredibly stupid things at the moment, I’m not sure if you’ve noticed…

We don’t assign “levels” or “categories” to autism in the UK because there is no scientific basis to do so.

What are your thoughts about all of the studies on the brain scans and the genetic studies?

I am done wasting my metaphoric breath.

Off to watch Project Hail Mary again once I get my children to bed, and dream that Dr Ryan Grace might send an Iridian to abduct me and save me from this hellish humanscape, as long as I can take my children with me.

The scientific "facts" you posted weren't backed up. You could have pulled them from thin air. If they are genuine results of research they haven't been reflected in current diagnosis processes. If autism was truely genetic and proven so beyond doubt here wouldn't be ongoing research, it would have been all over the news and i'm pretty sure it would have been quoted when paracetamol debackle happened.

Nothing is being taken out on any autistic person. In fact nearly everyone on the thread agreed all autustics need support and don't get it. If you are choosing to read it that way, you are mistaken.

I'm also very aware that some posters may be strugglimg to read the comments on this thread and understand them in context because they are autistic. I have held back many times from retalating to comments because of that and have noticed other posters doing the same.

This is honestly reminding me of something I saw online the other day. It was a tagline for a website and it said “We Are All Disabled.”

Except we’re not, are we.

How can you converse with people who call you horrific names, level horrendous claims towards you and then claim to be victims of bullying?
What’s the point in trying?

I honestly hope your dreams come true.