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 One of the reasons given is that their autism would be seen as "mild autism" and support maybe withdrawn.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

So a reasonable person wouldn’t admonish a parent who is fed up of being given suggestions for a cure that doesn’t exist, right?

I couldn't care less if parents want their autistic and learning disabled children diagnosed as something else.
My child is autistic and the will be autistic regardless of anything else.

But I don't agree with this ongoing battle of trying to create exclusion and separation as a way of removing rights from other disabled people.

So you do see it as a threat?

She autistic she is saying what helped her. You know how some autistic people tell you about trains constantly even when no one is interested.
And a different autistic person can only eat a specific coloured food.

I don't understand how you can't comprehend how her autism is impacting how she communicates.

Who said anything about removing rights?

My son deserves the support he needs, so does your child.

I’m not hoarding all the DLA, for example, whatever you’re entitled to then you’re entitled to. I don’t sit and think that if all those on lower rates just didn’t apply then we’d get more - we get what we’re entitled to and that’s either different or isn’t.

Nobody is gatekeeping autism or disability, but I equally don’t think it’s wrong to recognise that it presents differently, impacts differently, and therefore should be managed differently.

I have never said or even hinted that I believe it would be a negative for me to not be included in a category of 'profound autism'. I cannot see any world where I would be or I need to be, and I am quite happy to accept there are people with autism who have it much worse than me and I would never want to stop them getting support. If there's money for support that could either be allocated to me, or to someone like your son, then he should get it without any question.

My concern (as I have said several times) is around people with high support needs who are not considered to have 'profound autism' and the likely impact on them - it's effectively saying they're not disabled enough to fit into the top category. The measure being used is fairly arbitrary and that's why I object to you saying that people who say they're severely impacted aren't really. It should be need driven.

With any special category there is a cut off. That's my concern with any definition of profound autism as I said - what happens to people just below the cut off who may now no longer be able to access support they previously could, and what happens to people who once were in the category but things change and they no longer are.

Have you watched the news and the changes that are coming ?

Yes I absolutely believe the government want us fighting amongst ourselves

I absolutely believe they will target the disabled children that's needs are s enough as less obvious.
Going after children at the. More extreme end of needs would get public outcry but as seen over and over again society won't bat an eyelid at the removal of rights from those in the middle.

@fracturedupont
It’s an interesting topic. Would love to do more reading too, but I haven’t time right now either!
There is always disagreement between individual studies, but usually a sort of consensus emerges…which can change over time of course as new information is forthcoming.

My issue is with you admonishing the previous poster for being annoyed at the suggestion because of the implication that she hasn’t done enough for her child.

As I thought.

I haven't said anything about the PP not doing enough for their child.
I think you either have misread or mistaken me for someone else.

The poster who she was responding to, for which you admonished her, did.

The issue that I find amazing is that rather than attacking parents no one is seeing this as a healthcare disaster

For me, having my son in my late 30 with no immunity from the CMV virus along with genetic predisposition I firmly believe caused my sons more upsetting issues.

i think that had I been inoculated he would have had fewer issues to deal with and just more manageable Asperger type of ASD.

The Gov owes it to us to find answers - are people having kids too late or are people exposed to more viruses etc

The narrative is wrong - we are all let downs by the health system as no one is saying why this is happening.

@fracturedupont / @Leftrightmiddle

I’d just like to reply to the essence of what I think both of your responses mean, and if I’m wrong then fair enough.

I don’t have a SEN-betweener, and do have the “kind” of child where there would be uproar if support was revoked. Maybe that is positive, but it also means I have a child that, at least for now, even our shitty government recognised as severely disabled. I am assuming very few would like to swap.

I don’t set where “severe” cuts off, and I don’t decide who is impacted and by what.

I understand that changes to policy and funding don’t impact us in the same was as others, and I absolutely acknowledge that I don’t have that specific worry to contend with. Nobody will remove my kids EHCP, for example.

But to be clear - those changes aren’t my preference, it is not my fault that my son isn’t impacted by them and you/yours might be, and if you want someone to argue with, rather than doing it “amongst ourselves” - try the government.

Sitting on my hands here :)

I remember a previous thread where someone said that they thought there were roughly three categories of autistic people - (1) profoundly autistic with intellectual impairment and no family history of autism (whether diagnosed or not) - effectively coming out of the blue, (2) profoundly autistic/heavily impacted with or without intellectual impairment but with a family history of autism, and (3) less severely impacted* with a family history of autism. If I remember rightly, her position was that the growth a the 'severe' end was coming from category one.

I don't know how true this is but it's interesting as, if correct, the 'cause' of the first category is unlikely to be the same as the second two. It may well be this turns out to be a different condition with similar characteristics, and to have an environmental trigger. My autism is clearly genetic - I'm the only one diagnosed but one side of my family is all very clearly autistic!

• Read this as low support needs, or however you want to - you know what I am saying and there is no 'right' language to use that wouldn't trigger someone! I am not suggesting that people with less 'severe' autism have it easy.

I don't get this. Nobody wants to remove rights from anyone who is autistic. The problem is minimising of needs across the board and it seems everyone is falling for this pitting of people against each other. If we actually advocated for everyone by getting two separate diagnoses and more targeted support for different expressions of autism that would make more sense.

I just think it should be autistic with what other else needs are going on

Autistic

autistic with severe learning disabilities

Autistic and down syndrome

This is far clearer and so meets the needs of parents who want their child addition difficulties recognised
Il

I feel part of the problem is historically if children have been diagnosed with one thing their isn't seen a reason to assess for other things especially in the most complex cases. I know a young person (DS) who is also autistic. It is pretty much acceptable they are autistic by all professionals but it hasn't been formally assessed because they were told no point as won't impact support provided.

And I feel this is what is the issue here the most complex cases are more than just autistic but they have only been given autistic diagnosis so parents don't have the full diagnosis information.

But people don't fit neatly into 2 separate boxes

Thanks - I don't want to stop your child being recognised as having more significant needs than me. I am absolutely fine with that. I am worried about the negative impact of this type of definition on people at the margins.

Your son doesn't need this definition because they're clearly already in this group. I'm not clear who actually does except the people at the margins, and that's why the definition concerns me and shutting down people with significant needs who don't have cognitive impairment. I'd love it if this type of definition was used to give the 'profound' group more support without any impact on those not quite there, but that's not how the world works, and that's why it's really important to focus on the people at the margins.

Why though? Why is the same diagnosis necessary for people who it’s perfectly possible have no overlapping symptoms?

My son sounds similar to yours was at the same age. He's 11 and needs constant supervision. I'm constantly being told by professionals he has mild autism because he doesn't have learning disabilities even though he needs 1 to 1 care from a teaching assistant to actually produce any work. School understand his needs but not many other people do. He has been assessed as having the emotional development of a 3 year old. I think there should be the opportunity to diagnose people like our sons with severe autism without learning disabilities.

With any special category there is a cut off. That's my concern with any definition of profound autism as I said - what happens to people just below the cut off who may now no longer be able to access support they previously could, and what happens to people who once were in the category but things change and they no longer are.

Personally, I'm not sure that they could categorise it so neatly, however if they could all that would alter is the diagnosis given, it should not, in theory, remove support as support is needs based.

If you get diagnosed with profound autism and that automatically opens up avenues of support, fantastic, and if you just miss the diagnostic criteria whatever they may be clinically, you may not automatically be entitled to support however there will be an avenue of assessment.

Any disabled person can request a needs assessment, and what is granted is dependent on those needs, the diagnosis is just helpful to justify what those needs are likely to be. Whether you're actually granted support is an entirely different kettle of fish and a battle we all should be fighting for: the right support for the right people instead of being treated like a homogenous group with the same needs.

If parents of profoundly autistic children want there to be a distinction to separate their children from what would otherwise be high needs support autism or median support needs autism or even low support needs autism then that's completely valid.

Everybody knows what someone means when a parent says their child is profoundly autistic. It is a useful indicator. It automatically tells the recipient their needs are significant, persistent, lifelong and will often need supervised 2:1 care in many cases, and will need substantial later life care plans when their parents or caregivers are no longer here.

My son is high needs autistic but I wouldn't call him profoundly autistic, he's probably one of the children you're on about just not quite cutting the mustard, he will likely need lifelong supervision and care, however it is apparent at this stage in his development that could reasonably change with the right interventions and so I would not expect his diagnosis to automatically open up support rather, he be subject to an assessment process, whereas it would be fantastic if the support for a child like Sleepless' child could have their needs acknowledged early on and pathways to later life support be automatically moved onto as well as an ease of access to appropriate education which no parent of a complex needs child should have to fight so bloody hard for.

Absolutely your not to blame

I think the thing that upsets is that the view point that it's somehow easier for some parents.
The challenges may be different but it's still extremely hard where ever a child falls on the autistic spectrum.

I feel like we have a lot of understanding and empathy for those with complex needs but it is rare for people to understand the difficulties in the middle.

Ok so extreme autism should have a separate diagnosis maybe they aren't actually autistic and are just learning disabled

https://www.dailymail.co.uk/health/article-15728991/Just-child-doesnt-make-eye-contact-doesnt-mean-theyre-autistic-masking-nonsense-say-researchers-claim-condition-wildly-overdiagnosed-harmful.html

It's over diagnosed and misdiagnosed. See link above and www.autism.org.

We all know this but not many want to say it. It's an excuse for bad parenting, bad behaviour, lazy schooling and lots of other things which masks the condition for those who really suffer.

It's exhausting and I would agree that the whole diagnosis needs scrapped and restarted from where it initially began. I knew kids in the 90s with autism. There were no 'spectrums' or 'delayed' diagnosis. It was very evident they were neurodivergent and no one had to guess or pretend there was 'masking' or whatever else.

I get triggered every time I see this condition mentioned because too many of my family members want to label their children with autism or ADHD instead of address their shortcomings as parents. These shortcomings are as a result of a lot of things, not all their fault, as such, but certainly not the child's fault to the extent they need labelled with a lifelong condition and then medicated!