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 One of the reasons given is that their autism would be seen as "mild autism" and support maybe withdrawn.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 did not assume, I asked a QUESTION
you could have said yes or no
bit chose to be incredibly aggressive,
babies can do a form of sign language, indication you haven’t even tried as is your digging the question.

no one tried sign language on me, I mentioned it because it has worked for dozens of mute children with severe needs at my local specialist school.

I think these types of groups work for a very limited range of presentations. There are many autistic DC these groups don’t work for, whether they have what is being termed by some as profound autism or not. Autistic DS3 wouldn’t fall into the definition of profound autism because he doesn’t have a low IQ, but he has significant needs arising from his autism. For example, he has EOTIS with 2:1 at all times, has social care support, requires support with all ADL, will never be independent, etc. SEN sessions/autism sessions don’t work for him either.

I don’t think any posters are saying your autism hasn’t affected you in a huge way.

I think they are just saying you are on a different part of the spectrum to people who are non verbal, can’t communicate their needs at all, smear faeces, no sense of danger, no self care etc etc. you seem to think you’re at the same level and posters are just pointing out that you’re clearly not as you can articulate yourself, navigate websites, type etc. that doesn’t mean you aren’t massively affected by being autistic at all.

Yes I agree, I’m not quite sure which one DS would fit in (he’s on the lower end of profiund) but I agree there is a difference

indication you haven’t even tried as is your digging the question.

That's an assumption.

Unlikely. If she wasn't speaking by then likelihood is she wouldn't be speaking now.

I did answer you.

I said that in our case it would be Makaton and PECs, not “sign language and pointing at pictures,” and that yes we had tried it.

My child isn’t mute. He’s cognitively impaired. There is nothing selective about it.

I think my son is pushing into level two but hard to know as he is only just four. However not in the same league as the very profoundly autistic kids.

Because when you have a disabled child, you get asked ''have you tried this?'' a million times a day over the most obvious things and it quickly gets tiresome.

When my child was non verbal (for a different reason), the very first thing we did was teach a few basic signs. He was able to do it because he has the cognitive ability to be taught things such as sign language.

It is usually the very first thing a parent will try or a medical professional will suggest.

I think this is part of the problem. Some autistic people believe that what they have experienced is the same or similar to what clearly more severely autistic children.

If you've never been that severely autistic person how could you possibly know what they are experiencing? The severely autistic person can't even communicate how they experience the world.

As a perent I find this very arrogant and dismissive of our exlerience of not only caring for them and meeting their needs but loving them too. Ultimately, what is considered autism is an umbrella diagnosis and in time will likely (I believe) be shown to be multiple different conditions so what you experienced as a child may in time be shown to be completely different diagnosis.

I’m going to bed, back to school here tomorrow.

Fingers crossed they cover book writing and pointing at stuff!

👋🏻

You also said in that same answer:
Please don’t assume that we’re not informed enough on his needs to have tried alternative communication. We’re his parents.

There was no need to accuse me of assuming anything.

Its called debate

They absolutely can and should be listening to the patient’s carer (and where appropriate the patient themselves), reading a hospital passport, care plan &/or communication passport if there is one, and making adjustments before even meeting the patient.

Agree agree agree

I also think that in my experience, an autism diagnosis has been at best utterly pointless for my child.

My friend has a similarly aged child to mine, also with an autism diagnosis. Our children have entirely different symptoms - not just different degrees of severity, but entirely different categories of symptoms and difficulties.

Do the children’s difficulties then have a similar cause? As in a quantifiable, physiological cause that we could identify and test for that unites the children despite their different presentation? Who knows.

Do the children have similar prognoses? Who knows.

Can a medical professional at least be able to predict what my child’s future might look like using the diagnosis? No, of course not, because autism is a spectrum, every autistic person is different, etc etc

So, how on Earth is it a useful diagnosis for my child? What purpose does it serve?

If I tell someone my child is autistic, I would still have to explain their unique difficulties and struggles in order to make people understand the support my child needs. The diagnosis serves literally no purpose to us. It doesn’t describe anything, it doesn’t predict anything.

If anything, we had more support from the NHS before he had the diagnosis.

I am not autistic, but have autistic kids that have very differentsupport needs. My take would be

1. There won't be any additional support if things are reclassified. Currently have to fight tooth and nail for anything and that won't change.
2. We don't have the resources to reassess everyone with a diagnosis to see if they should move up or down a scale.
3. People can change abilities eg be pre verbal until 8 or 9 and then start talking. I know a young adult who didn't talk until 8 and now has a university degree. There aren't resources available to reassess with changes.
4. It's a spectrum and spikey profiles don't fit a linear scale.
5. The autistic community has historically been ignored, gaslighted and abused in the name of treatment and cure. Perhaps it's time to listen to them.

And that is my point. If we distinguish between the "severely affected" and the "high functioning" the high functioning get lost. It is assumed we don't need support because we can "cope". Believe you me, we don't.

We will become less supported and suffer more.

Let's not go back to the days when autism was considered a male problem only. And high functioning women were laughed at for being eccentric.

You tàlk of arrogance while discounting my own memories as a severely autistic child and my lived reality as an severely enough autistic adult who cannot work.

YOU have never been a severely autistic child, cubic, so your experience is that of a parent/carer.

if anyone is being arrogant and dismissive it is you. You’ve not walked a single step in my shoes or that is anyone with severe autism.

I agree with this - and every little thing is no a sign of ASD. My son’s got a quirky personality, he likes to learn, he likes to do rubix cubes. Everyone always asking me if he has ASD!! He does not. He is dyspraxic which is now is including the spectrum but I wouldn’t count him as having needs

As a parent of a 'profound' teen, who still can't use the toilet or use a knife and fork and has never spoken one word. I wholly support a separate diagnosis ❤️

Check if your hospital has a learning disability liaison nurse (even if DS doesn’t have an LD dx, they will mostly still help), learning disability and autism liaison nurse, or autism liaison nurse. They can often be incredibly helpful in arranging adjustments.

How is that your point exactly when I’ve said the pp is hugely affected by her autism? I have not at all said she can cope, in fact I have reiterated that she struggles considerably.

my post doesn’t prove any point of yours.

That’s so awful.

i get so worried about my child needing healthcare.

This is a bonkers comparison/arguement.

Having just had a parent die of cancer because he wasn't diagnosed until just stage four it is pretty offensive as well.

I think they are just saying you are on a different part of the spectrum to people who are non verbal, can’t communicate their needs at all, smear faeces, no sense of danger, no self care etc etc. you seem to think you’re at the same level and posters are just pointing out that you’re clearly not as you can articulate yourself, navigate websites, type etc. that doesn’t mean you aren’t massively affected by being autistic at all.

They are saying that about children. I’m not a child anymore. We don’t all stay that way the entirety of our lives. And I don’t even agree autism is a spectrum. Most of those boxes I still tick, but why are those the most important boxes to these people who aren’t autistic? Why isn’t concept of money? Not being able to tell friend from foe? Not being able to cross a road safely? Or drive? Or not fall over randomly and break bones regularly? There is much more to autism that is at the same level that they have randomly picked that is geared around children,