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 One of the reasons given is that their autism would be seen as "mild autism" and support maybe withdrawn.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.

Well quite.

I think it’s entirely hypocritical to accuse others of “abuse” whilst also yelling at them to get your point across.

I don’t allow my severely disabled child to shout at strangers for very good reason.

This to me is why we need to be able to have this discussion. The reality is that an autistic person who doesn't care for a child with 'profound autism' (as it's being defined here) or even a child with high support needs but not hitting that definition, can't ever understand what it's like to be in that role. But equally, that carer can't understand what it's like to be an autistic person (unless they are autistic themselves of course). In fact one autistic person almost certainly can't imagine what it's like to be another autistic person.

The only way to try to get a better understanding is to talk and share experiences. And (although I expect this one will be strongly disagreed with by some), the autistic person isn't the only person that matters here. People who care for autistic people are also important, even if you centre the autistic person because if they break, everything falls apart.

“People who care for autistic people are also important, even if you centre the autistic person because if they break, everything falls apart.”

Totally agree

You've had one of yours deleted too

Trying to bring the thread back to where it was.

I had a pre arranged c section. I was ill throughout the pregnancy and I had to spend time in hospital on a drip. I bled throughout too.

Ds had normal development until 18 months when he regressed. It was very sudden and he lost the majority of his skills to that date.

The whole point is that this thread was about proposing a change in the diagnosis of autism, because children like your child face other difficulties that are not caused by autism.

My posts related to autism. I’ve specifically stated for the avoidance of any doubt (although it should be obvious anyway) that I, and no other poster I’ve read comments from here, has commented on your child’s other difficulties that aren’t caused by autism.

The OP’s post was about the diagnosis of autism and whether it should be changed because some autistic people who also have other disabilities due to having other medical conditions too should be given a different diagnosis pretending that there are different “types” of autism.

The answer is no, they shouldn’t be, because there’s no scientific basis for it, it will cause a great deal of harm and mean it’s even less likely that there will be proper research into treatments for such children based on actual medical evidence of the conditions that are causing the disabilities that they have in addition to those suffered by other people who only have autism.

Have I? Ok. Well, I’m sure Mumsnet can explain to me which part of the scientific facts I’ve posted were apparently unacceptable to them. I’ll ask them.

Yet another example of the appalling moderation here where absolutely disgraceful comments on this thread were left to stand, attacking multiple autistic posters who engaged with you all politely despite some despicable and discriminatory and factually false ridiculous comments hurled at them repeatedly, yet apparently something I have said has been removed. It’s quite comical. I’m sure anybody reading it will be able to see what you and your acolytes have done though, so it doesn’t really matter.

How horrible for you.

And also clear evidence that his main difficulties that you have described are not because of autism.

Thank you for your input.

lI’m just going to say one more time that it is not acceptable to tell the people raising autistic children that they know nothing about it.
We do know autism, it lives under our roof.

Nope. You see the outside.

@ProjectHailMary
I think that is such a disrespectful reply to pp. Carers who live with a person who can’t advocate for themselves (due to age or disability) are their voice. They know the autistic person best of all.

I agree with pp that it’s not only autistic people who live with the effects of autism too. Carers know it well, at least in the manner the person they care for is affected.

Thanks, this made sense - I didn’t want you to think it had been ignored.

I think it’s right that we acknowledge that others who haven’t experienced it don’t know the challenges that children like mine experience, or the challenges involved in caring for them. It’s also right that non-autistic people don’t share the experiences of those that are, and that it’s such a range that there’s no real way of knowing how it’s experienced by others.

Very early in my teacher training we were told “If you’ve met a person with autism, you’ve met one person with autism.” Simple maybe, but think it gets the point across!

Quite funny to hear someone stating that a few capital letters have affected them so badly and they consider it “shouting” when it was rather a function of me being run off my feet and trying to juggle things and not having time to bother to underline or make things italic instead.

Your poor senses.

Spare a thought for all of the autistic people who have to actually deal with a constant assault on their senses which they cannot escape, every day. Neurotypical chattering on trains or in offices and forcing us to listen to their verbal diarrhea every day; their incessant, excessive and unnecessary noise in every public environment; their determination to stare at people every time they are speaking and expect them to do the same back; the bizarre environments with disgusting smells and intolerable temperatures that they create and consider comfortable and expect us to endure; the school uniforms they design for our children which feel to them like wearing a suit of sandpaper, classrooms with flickering lights and so much clutter everywhere even on every wall that it makes people feel nauseous, being forced to be in environments where people frequently invade your personal space and touch you without warning or consent. People sometimes accidentally and often deliberately misunderstanding everything you communicate, every single day.

Think yourself lucky that all you’ve had to deal with it a few capital letters which you decided to interpret as “shouting” even though they were clearly silent, given they were just images on a screen.

Perhaps some of the parents here should speak to autistic adults more and listen to them because while we can’t shed any light on the impact and internal experience of your children’s other disabilities that we do not have, there is good evidence that the experience of many of these things above ^ which are actually caused by autism will be very, very similar, so you might get a better understanding of what their internal world may be like if you understand at least one of their medical conditions properly.

For transparency - I didn’t give birth to my son, I adopted him. His mum unfortunately completely left the scene a few years ago now, I adopted him at 7. He is my partner’s biologically.

The pregnancy was high risk throughout for various reasons, labour was long and he was eventually emergency section because his heartbeat couldn’t be found.

He missed developmental milestones pretty much from the off, and was diagnosed by the time he was 2 years old. He’s currently plateaued at 2.5yrs old, and will be 10 in a few months.

I spare a thought for autism every day, many thoughts in fact.

I’m going back to ignoring you now, there is absolutely nothing to gain by having a back and forth about how “little” I understand of autism, and of my own child’s medical needs, and as much as you’re welcome to have an opinion - I don’t have to engage with that opinion.

I trust you won’t take that personally.

Telling autistic adults they are appropriating diagnosis that belong to profoundly disabled people who are also autistic is pretty vile imo.

I'll let my son's dr's and other professionals know. I'm sure they will be relieved at your findings.

You've been really offensive and aggressive all day.

I do think that there is something in the severity of needs being linked to early diagnosis. My son was diagnosed very early too. I think this makes sense too as the more obvious the easier it is to see as opposed to those facing mental health problems or who develop normally and realise the differences later.

They clearly don’t if they don’t even understand what medical condition is causing which parts of their disablement! It’s actually extremely concerning as you’d think this would be the parents’ first priority in this situation: to ensure that all medical conditions of the child had been diagnosed, obviously not be fobbed off with an explanation that autism was the cause of some disablements that it cannot possibly cause, and find out what is so that they could access specialists in that area and ensure the best possible support and interventions were put in place.

The very last thing a responsible parent would be doing in that situation would be trying to blame all of their child’s difficulties on one diagnosed condition when it quite clearly couldn’t possibly be the cause of many of the observed issues because that medical condition on its own does not cause those effects.

This would be like me having a child with breathing difficulties and fits and then stating that because they were diagnosed with asthma this must be the cause of the fits, anybody who doesn’t have fits doesn’t really have asthma, my child has “profound asthma”, that all of the people who have been diagnosed with asthma and don’t have fits don’t have “proper asthma” and spending my time on the internet having a go at anyone with asthma who doesn’t also have fits.

Or, I could be a rational human being and look up the medical research and realise that fits aren’t a symptom of asthma, and realise that my child may well have asthma and also another health condition at the same time that is causing the fits, such as epilepsy.

This thread is utterly ridiculous and the more that people have tried to point out the science and medical research and evidenced facts that would actually mean the parents of these profoundly disabled children might have more chance of helping their children and pushing for research into the actual conditions causing their extreme disabilities, better support, etc. the more hostile and unpleasant they have become.

Unfortunately: “the truth doesn’t care about our needs or wants. It doesn’t care about our governments, our ideologies, our religions. It will lie in wait for all time.”

Science and fact is the only way to a better future.

I'll start another thread when this one ends with the preface that there are posters who are trying to derail the thread and being aggresive. I'll suggest ignoring them.

I'll point out that some poster are autistic themselves and because of that may not understand or mis understand some posts.

Exactly.

Oh great. You’re not done yet? You’re going to continue deliberately spreading all of this pseudo-science and discrimination in the hope nobody has the energy to come and debunk it all again. Lovely.

How is it disrespectful to point out that she cannot ever experience the world as an autistic person does, given that she isn’t one?

This is just a scientific fact.

There seem to be multiple posters here who find facts very offensive.

Yeah, I’d imagine so.

Of the children I know that were diagnosed pre-school, they do tend to be higher need.

By 2y/o he was this bouncy little thing who just ran around (very quickly) hand flapping. He couldn’t recognise or respond to his name, wasn’t yet leading people to what he wanted, and any attempts to get into his world weren’t successful. Fortunately he is a bit more inclined to let us in and seeks engagement more now.

Good idea OP