ASD…. Should there be another name for a more ‘severe’ version.

[iminvestednow]

Please forgive me as I’m new to this, I have a son with Autism. This is his only diagnosis. He is a beautiful, kind and wonderful son.

DS struggles greatly, although we have made fantastic progress in so many areas he will still never lead a ‘normal life’. He has no concept of friends, money or any social convention, he will need help to get by forever, he is extremely vulnerable.

I’ve noticed recently (great that people are more accepting) a lot of people saying, I’ve been recently diagnosed with autism aged 40 and it’s helped me so much. I think it’s great that people are getting support but does it dilute what severe autism is? Most of these people are competent fully functioning members of society and will never need the kind of help my son does. Should there another term to differentiate?

Plenty are.

Of course it’s not ok for people who need support to not receive it. Everyone deserves support for their individual needs. But when money is limited it’s totally right that it’s used to support those with the most severe disabilities. They aren’t even getting enough money to meet their needs, never mind have some left over to also meet the needs of high functioning people like you and I. It sucks that we are just left to struggle with no help, but there isn’t any money to pay for us to receive help.

The discussion is about autistic people, and how they should be described. OP started with ASD…. Should there be another name for a more ‘severe’ version. many people resist the idea of any descriptors within that population and seem to be offended by the idea that there are people who’s experience is far more challenging than theirs and oblivious to the fact that funding, support and opportunities are being weighted towards the less impacted. Some are under the impression that this has not changed things for less independent autistics. “the more severe version of autism” having a new name seems very unreasonable to me.

The challenge is that right now, there are plenty of autistic people (and allies) who would say that you should not describe anyone as 'severely autistic'. It brings it back to the idea of describing everyone visually impaired as 'blind' Vs being able to distinguish between someone who is mildly short sighted and someone without eyes.

I'm not offended at the idea of some one Having greater needs then me.

I'm offended by the term high functioning. I'm not high functioning at all. If I was I wouldn't be having the struggles I do.

And yes I can accept that there isn't money for everyone.
But there is accommodations that can be made to support that would not cost.

I have not seen one but if support for me at all. All I get offered is counciling.

What I do see is though is those with higher needs getting financial support .. and rightly so... Infact they don't get enough... Groups. Social activities... Aimed at higher needs . .. all brilliant.

many people resist the idea of any descriptors within that population and seem to be offended by the idea that there are people who’s experience is far more challenging than theirs
On the subject of how “challenging” someone’s experience is - that’s not as straight forward as you might think. As a woman with high functioning autism I have challenges from being a mum. Challenges from being a woman who dates men but is at high risk of sexual abuse. Challenges from having to clean a house and hold down a job and manage my finances. Challenges from trying to participate in normal life. A person with profound autism won’t experience those challenges because they’re unlikely to be working, dating, having kids etc. Equally they have challenges that I don’t experience, such as being non verbal or non mobile.

High Functioning means you have an IQ over 70. You ARE high functioning because you are reading writing and expressing your opinions and emotions in a way a Low Functioning person could not. Your outrage at the term is misplaced (though people so regularly misuse the term now that it is/has morphing into the far less helpful idea of how well you can do life).

I think it’s seductive to imagine that a totally dependent person lives some sort of strange peaceful untroubled life. I don’t really think that’s the case though. I think we are probably all really aware of just how much comfort and stability an autistic person might get from knowing and understanding what is going to happen and how and why? We know that support can include, visual diaries, routines, warnings about changes in environment or even from task to task. Imagine not getting that EVER. Imagine not ever knowing what’s likely to happen when where or how, not being able to get any idea. So I get that you might not worry about your love life or water bill but I think the reality is a chaotic exhausting random world which you cannot predict or win at.

I'm not sure how many times I need to say
I AM AWARE THERE ARE PEOPLE WITH GREATER NEEDS. That WILL NEED A LOT MORE SUPPORT. I KNOW THERE WRE PEOPLE WHO ARE NON VERBAL 24/7 AND NEED SUPPORT EVERY MINUTE IF THE DAY.
i know I have different support needs.
My point is that it's not fucking high functioning.
High functioning make its sound like there is no support needs at all and everything is fine.. which has been proven on this thread.

AND YES THEY HAVE SAID I DONT DESERVE SUPPORT. INFACT BEEN TOLD THAT MY NEEDS ARE MINUSCULE AMD INSIGNIFICANT.

In our house, where 3/4 diagnosed autistic, we use the word 'flavour' to discuss the differences between us all. My flavour is very different to my son's. I was very high achieving at school and university. Struggled in the workplace but managed a career prior to having kids. My DH is a different flavour, inattentive to the point of forgetting what he ate for breakfast that day but a talented writer and communicator. My DS has a learning disability, speech and language delay, ARFID and attends special school. His autism is a different flavour to ours.

We do all have similarities though, so we are all ice cream. Just different flavours.

But you are high functioning compared to a non verbal incontinant autistic child. It doesn’t mean you cope well or don’t have issues just that compared to a low functioning autistic you are high functioning!

I'm out.

You obviously are on the spectrum as you are completely lacking in self awareness. ...
Maybe it is because I'm autistic... But there seems to be something purposefully insultinf in how you used that.

I’m sorry, it came across harsher than I meant it, I apologise, there is no excuse. I just meant we need to refinish differences. I wish you all the best .

*recognise

Yes but with the term high functioning people don't see the support needed. They assume . Which has been proven. Here numerous times that there is no.

Just how you want a name for high needs autism because you think people won't know that your child has high needs because people assume autism is a quirky personality
High functioning needs changing because people think it's just a quirky personality with no needs at all.

I totally agree. It's all very well saying it's a spectrum disorder, but in reality there is nocomparison between someone with Aspergers and someone who is non verbal.

DS is autistic. All the classic signs from babyhood - wouldn't eat or sleep, rigid when held, screamed and screamed and screamed and screamed. Delayed milestones, very slow at school - couldn't and wouldn't write his own name until age 7. Now he's at uni on target for a 2.1 or possibly a 1st, has friends, a girlfriend, loads of interests, eats a wide variety of food. Most people would have no idea of his diagnosis. He still struggles hugely behind the scenes, but that's a world apart from an adult who is incapable of independent living, can't talk, can't work etc.

Effectively HFA and severe autism manifest like entirely different conditions.

OP you saying to another poster 'You obviously are on the spectrum as you are completely lacking in self awareness' came across as nasty. This thread has tuned into a sh*t show of bashing others with varied needs. All the posters here who are autistic have quite literally told you they understand clearly that other autistic people will have different/increased needs to themselves. Stop being angry at us for having different needs to your child We are all struggling in our different ways. Please be aware of the impact this thread will be having on the mental health of many neurodiverse people who happen upon this thread whether they comment or not.

Yes but with the term high functioning people don't see the support needed. I think that’s only true because because of the blurring of terminology/meaning. For a HFA who has significant communication deficits (for clarity normal IQ but not able to use their words effectively) people knowing they’re understanding isn’t impaired is REALLY important. Support and therapy will be totally different to that needed by a person with exactly the same outward presentation who also has a learning disability.

I’m also a bit confused about this talk about level of support. My son is coming up for 16 and since his diagnosis of autism (age 7 although non verbal they didn’t want to label him) we have had no support. I bath him, dress him and do everything. He attends special needs school but no more suppport other than that. I’ve just been told that as my son is turning 16 in March (despite being obligated to attend school I will now be charged £60 a day in taxi fees)

Effectively HFA and severe autism manifest like entirely different conditions.
and now I’m confused! What do you mean by “severe autism”?

I know what you’re describing and It’s not the form of epilepsy my son has. So for eg he doesn’t lose consciousness or have any muscle contractions. He never falls to the floor for eg and suffice to say that what goes on bears absolutely no resemblance to how a seizure would normally present itself. Which is why it took quite some time to work out but once we had the Professor of Neuropsychiatry on board it all fell into place with days.

I think people forget there’s many many types of epilepsy and I believe there are 4 main sub groups with sub groups within them.

£60 a day?! Are you sure it’s not per week at least? I thought the monthly charge we had was bad but it was nowhere near that. That’s surely unaffordable (as per week would be tbh and per month for many).

That charge is just due to whoever wrote the legislation forgetting about 16-18 year olds btw because at 18 it is meant ti be funded again (although my LA, along with probably the rest, ignore that & charge 18+ as well even though it has been pointed out to them that the loophole they are using only applies to 16 & 17 year olds)

She likely is autistic but mildly on the spectrum, she is called the "spokesperson" of autistic people, no she really isnt, she dosent represent the autistic people that cant brush their teeth or hair or wash themselves does she. She gives an impression autism is some sort of fashionable diagnosis where you live your life as a person who dosen have autism. Many autistic people cant tolerate being in the centre of attention,she enjoys it so much that she makes sure she is not just in the centre of attention but nearly nude, many autistic people dont tolerate travel/new places etc- she travels the world for fun etc. I am not saying she isnt but she is makign autism look to someone who dosent have personal experience with it like its a condition thats not limiting in life.

Right now DLA and PIP are needs based, I know people who work for the DWP and there are talks that PIP/DLA rules will be made tougher where children cant claim DLA for autism without consultant letters and diagnosis. Beside having autistic family members who are so much on the spectrum that they need daily help with everything I talked to another person with autism that she has had her PIP taken,she has got it back now thanks to CAB etc fighting for her but basically she was told she needs to get a job and no PIP- I dont want to sound rude but she is not employable, her education has suffered, she cant even go to shops on her own her mother takes her along but needs to shop for her etc.

Yes I know why the term is problematic these days. However, if I say that my son was autistic & provide no further description then it will lead to a miscommunication and will not give any insight at all into his condition. The levels thing doesn’t work because you get all the types of discussions as said up thread about daily fluctuations. That isn’t how the levels thing is meant to work, it was meant to provide a way of replacing terms such as Asperger’s or severe but doesn’t work because people still don’t like the distinction it seems.

FWIW I don’t think many who would be diagnosed at level 3 particularly object to severe or profound or any other descriptive term - they just need the distinction. There definitely is an issue around expectations for people profoundly affected by disability. -I wrote a chapter about moving away from a deficit model many years ago - whilst using the term severe throughout the chapter (which was usual terminology at the time it it would not have been published). However, that deficit approach ime has little to do with terminology such as severe. It hasn’t improved since the term became taboo anyway. I now use it with a disclaimer or in speech marks if I need to use it to describe something about my son.

The objections around terminology largely seem to be around underestimating support needs of those at the higher functioning end of the spectrum. Maybe we need to think about why we want people to understand our lived experience. When is that important? Many many years ago I had to have some therapy sessions as part of a programme I was doing with ds1. I was grumbly about the therapy bit, but I was excellent. Delivered by someone who had worked with families for years. Anyway I was grumbling about people (general public, acquaintances) not ‘getting it’ & not understanding anything about our family’s life (because it was so far removed from their experience) - and she said - ‘why does it matter to you whether other random people get it? Why is it so important?’ This conversation was something like 15 years ago & I still remember it clearly. It was a moment when I realised that other people didn’t have to understand our life and I could let that go & just get on with doing us.

The only people I need to to get it now are those who are gatekeeping support, or who, by not getting it, are making a service inaccessible. And they don’t need to understand every nuance - they just need to know & accept the reasonable adjustments required. The term autism isn’t particularly useful for that tbh because most people with that diagnosis do not need the adjustments he does. Eg attend A&E. Explain it will not be safe to have him wait in area assigned (too many people close to the firing line) & that he can only wait a very limited time. Also mention there is a flag on his file detailing this. Receptionist tells me she has an autistic daughter & he’ll have to wait in the area for however long it takes just like her daughter does. Obviously within 10 minutes all hell breaks loose and he is given an adjustment (not unfortunately the one needed, which would be the safest one for him & others & other parts of the hospital give - to wait in the car parked outside). I’d say A&E is largely inaccessible to him now unless he is unconscious. These types of situations are the only times I need people to understand his support needs now. There isn’t really the terminology to do that in any meaningful way.