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 One of the reasons given is that their autism would be seen as "mild autism" and support maybe withdrawn.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

I wasn’t the one who said they should go through life with little trouble.

I think some people have never seen ‘profound’ autism because if they had, they would agree it is ludicrous to lump people with PhDs and kids into the same diagnosis. Whatever is going on with the latter group has nothing to do with whatever is going on with the former group. Someone compared it to stages of cancer, but with cancer there are biological similarities that mean it makes sense to group the diagnosis under the same category. With autism there is no biological or neurological process or manifestation that means we think we are dealing with the same thing on a physiological level. So yes OP, hard agree.

Thats reassuring that they would just assume the low iq to meet the criteria so very needy people werent excluded on not being able to be measured.

Im still a bit concerned that others needing high level 24/7 care but able to do puzzles in a day centre with a carer, and point at pecs to thier carers to signal a nappy change might get left out though as that still feels like a very high level of need to me.

I know. And I stand by what I said.
I don't feel like they will be going through life with a great deal of trouble.
There's so much more understanding about the differences and difficulties that they may or may not have than there previously has been. Even down to how I parent them Vs how they would have been parented in times gine by.
I'm not saying that they don't need any support but the level of support my children and children like them require is far different to the level my cousin's children, and children like them, will need and giving them a separate diagnosis would be helpful.

What is classified as severe autism?
In rea life - genuinely interested.
Not intending to offend by asking.

I think some people have never seen the profound difficulties of autism without the additional condition of a learning disability, if they had they wouldn’t dismiss the disability and severe needs it so often entails

Make your mind up. Your posts make zero sense.

My DSD has an autism without LD diagnosis so I know full well the difficulties she faces. They are not remotely similar to profound autism.

It’s not profound autism it’s autism with a separate learning disability. You don’t speak for the difficulties many many with autism including my dc face .

Please…🙄

I think it depends what you class as difficulty, and that will be subjective.

My son has very limited language, no toileting ability and currently likes taking all of his clothes off at any given opportunity.

He isn’t bothered by any of that, he’s completely oblivious to it. Lives in his own little bubble most of the time, and is quite content there.

If he wasn’t in meltdown (which obviously does happen), he doesn’t have any difficulty with his needs whatsoever, he’s not aware of them.

I think most of us in that situation can see that that’s very different to a child who struggles with their needs, is aware when they’re socially shunned, hears the comments from others etc.

I think I've been quite clear.
I agree that separate diagnosis will be beneficial to people with more profound levels of autism.
I don't feel like my children (and children like them) will have a great deal of additional difficulty in life due to the new level of understanding surrounding ND.
I do feel like people like my cousins children will continue to have great level of difficulty.

Well exactly. You have no idea or experience of the huge difficulties we face.

But you’ve listed significant difficulties!🤣

And your dc don’t speak for the entire autistic community anyway , many of us have dc struggling with far worse than even what you’re listing.

Well yes she can be profoundly autistic just without learning disabilities. You have no idea how autism impacts her day to day life.

You are just assuming that typing coherently equals not proper autistic. Maybe what you need to realise is that those with what you assume are more autistic are actually autistic with other disabilities alongside.
The autism is one condition and then they have other conditions that is why they present differently.

Can we not dismiss actual lived experience of autistic people

Not to dismiss the dreadful ways in which you are suffering...
but
you have been successfully been through a recruitment process 8 times, and have a mortgage.

You are vastly, vastly different from an adult in nappies who will be in residential care for life.

Their needs to be at least two, possibly three or four, different diagnoses for different types of autism, let alone co-diagnoses for things like Learning Disability.

I dont think 'society' has an agreed definition. People woukd say someone has severe autism to mean all sorts.

But one diagnostic framework includes levels. Level 3 would be classed as severe.

It uses words like 'very substantial support' compared to 'support' for level 1. This would mean 24/7 care v lighter touch assistance for things. Its uses words like like extreme, severe deficits, very limited compared to words like deficit, restricted, rigid

There is a movement asking for profound autusm to be a seperate diagnosis. It suggests 24/7 lifelong care plus low iq and being at least 8 years old as the criteria in most versions I've seen of this request.

No, I don’t. I have different experience.

To use the autism phrase - they’re different, not less.

This isn’t an autism-off, my child isn’t more deserving of help than yours, but it’s important we can properly establish the ways they differ and what that means in terms of their ability in certain areas and the support that needs.

My child’s smearing doesn’t take away someone else’s child’s crippling anxieties.

But they both deserve treatment, and we have to be able to establish which is which to be able to properly support them. Which is why proper classification of what someone’s needs look like is important, because that range is so huge and different.

Profound autism is a classification for autistic individuals (typically aged 8+) who require 24-hour, round-the-clock supervision and support due to severe functional needs. It is defined by having an IQ under 50, being nonverbal/minimally verbal, or requiring extensive daily assistance.
this is the criteria for profound autism, so i doubt someone who can type and communicate effectively meets this criteria.

Compared to the difficulties of children and adults who have no means of communication, no ability to toilet appropriately, no means of regulation I don't view the previous listed difficulties as anything that can't be navigated (as I already stated) with patience and understanding.

My children (the older two at least) and children like them will very likely enter the workforce, have relationships, and hit many, if not all, the normal milestones in life. They will need friends, partners and employers who are understanding of their additional needs and it might take them longer to get where they're going but they can get there.

Someone who can't speak for themselves, can't care for themselves at all and requires 24/7 care will not be able to overcome their difficulties with any amount of support to live a largely independent life. Likely won't meet the aforementioned milestones.

Then your children would fall into a different category, surely? I didn't say that mine were representative of all. I'm agreeing that better categorisation will result in better outcomes for those who need more support.

No it really isn’t. It’s impossible to put autism into boxes.

Also treatments are only ever given according to need and differing needs are clear to see ie my child having treatment for their severe autism isn’t going to in anyway impact the treatments your child receives when they are different and not even from under same department.

You know it's about support. Those with more severe disabilities get more money and support than those without. As is right. And they should probably get more help and money.

But saying that there are two or three types of autism of different severities is already built into the diagnosis, for it is a spectrum. Excluding those of us with autism that is often invisible isn't helpful. It means governments think it's a niche issue, not something affecting millions of people. Employers and service providers look at us and say well you can get a job and you're not in nappies, so you're not badly off - which is offensive and very upsetting and which more than one person has said to me on this thread.

As an example it's like asthma. Some people need oxygen 24/7, some people just need to take a puff of their inhaler twice a day. It doesn't mean it's a different condition.

We're not going to agree. But please stop with the assumptions that we're fine because we can work.

I'm not at all fine.

That poster was happy to dismiss the experience ,s of parents of children who cannot communicate,beyond a very basic level by asking if they had cosidered sign language and pointing at things
And suggesting once these children were taught sign language they would be able to attend mainstream school
It works both ways.

Haven't read the full thread but I'm aware how these often go. In terms of the huge variability, isn't that like any other disability? I have a family member with a rare congenital disability. They're missing part of a chromosome. Anyone with a missing part of that same chromosome is classified as having "x" syndrome (won't give the name as it is outing). Within x syndrome, depending on how big and where the missing section is, and if that section attached to another part of the chromosome or just isn't there, there is a huge variability of intellectual and physical disability.

The doctors couldn't tell us anything really about what the diagnosis meant other than profound disability - there was a 50/50 chance of talking (at all), 50/50 chance of ever walking, 50/50 on pretty much everything. Several years down the track they're making gains but likely to be on the more disabled side of the scale. We know others with the same syndrome who are much more capable. And yet they all still have the same syndrome, as the cause is the same regardless of individual disability or capability. And all need support, but it is specifically tailored to individual needs as the needs are so variable.

So - presuming there's a physical "cause" of autism, albeit less concrete than a chromosomal deletion - shouldn't it all be "autism" regardless of severity of effect? Personally I think the confusion in the general public and healthcare / support services requires education, rather than elevating one set of "effects" over the other. People deal with all sorts of highly variable syndromes, illnesses and diseases, and we manage to cope with this variability within the diagnosis so I'm not sure why it's so hard to do likewise when it comes to autism.

I agree but what I don't agree with is talking for those who cannot communicate. Those who can have no idea what it is like to be somebody who can't ever? Quite often the views of carers/ parents get dismissed because they don't have autism yet, they're the ones who have supported the individual who cannot advocate or communicate their whole life and know them best. How do they know their lived experience is how does the autistic person know how similar or relevant their experience is to that person, they haven't been in their shoes? I'm not saying this is what you mean but this does happen.