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

627 replies

iminvestednow · 14/12/2022 00:33

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?

OP posts:
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TeamHerbivore · 14/12/2022 09:47

Jellycats4life · 14/12/2022 09:39

Fundamentally is DOES seem to be the issue that people (and I guess I mean those who have autistic people in their lives and those who don’t, in equal measure) really need autism to fit into neat, easily delineated boxes, when it doesn’t. Just like neurotypical people don’t fit into neat boxes either.

It’s exactly that. The neat little boxes don’t work. But the public want them to as it makes them feel better.

Having gone though the process of diagnosis for a child and spoken to clinical psychologists and a speech and language therapist, it’s very clear that they feel the best way is one diagnosis of ASD, then leading to detailed reports and care plans for each individual. And they are the experts. Quite frankly all the non expert ‘experts’ should listen and learn from the real experts.

Sindonym · 14/12/2022 09:47

RHOShitVille · 14/12/2022 09:35

I can totally understand your reasoning, but...

DD was diagonsed with ASD/Aspergers - told mild, high functioning etc. This led to a lack of support from school and specialists - told to just crack on ourselves.

3 years later the masking and anxiety led to a breakdown and psychosis when they were 10.

Now aged 14 they are no longer in mainstream school, on medication for ADHD, depression, anxiety. On the surface they are an intelligent 14 year old with a great life, but in reality their life is very hard.

Her diagnosis now refers to her complex needs, no mention of mild, high functioning.

It is a very difficult area - and I agree that a single term cannot cover the whole spectrum. But I think terms like mild and high functioning can be really unhelpful.

Tbh you wouldn’t have got any help whatever they called it until she could no longer cope. Sadly. I think that’s partly why I don’t care what labels they stick on my son now - I just care that the people around him know what they are doing.

I personally think it would be better if MH services all had a statutory duty to become autism specialists. At the moment they use it as an excuse to not provide support to people who need it - who then have to have an actual full
on breakdown including psychosis to access any support at all (which will probably still be woefully inadequate).

The diagnostic system for autism is pretty much broken imo. It helps no-one.

Cuppasoupmonster · 14/12/2022 09:47

it would be better if MH services all had a statutory duty to become autism specialists.

What about other conditions?

Cuppasoupmonster · 14/12/2022 09:48

ohioriver · 14/12/2022 09:43

Why shouldn't I access support?

What kind of support do you mean? On what level?

xhelper · 14/12/2022 09:48

@IndieK1d Because your needs aren't as great, or even comparable, to someone in nappies lifelong who can't be left in a room alone, needing 24/7 supervision?

I have autism myself but really wish there was a different way to say it as I'm not comparable to someone in nappies ffs

Sindonym · 14/12/2022 09:48

A lot of professionals have issues with the current system of autism diagnosis (& therapeutic practice around autism ). There certainly isn’t a consensus. Many also agree the levels system really isn’t working.

ArseInTheCoOpWindow · 14/12/2022 09:51

POTC · 14/12/2022 08:30

Those levels show exactly why high/low functioning labels are no longer used.
My son is predicted 9s at gcse. He is also non verbal when overwhelmed. He's everything from level 1 to 3 depending on the situation. It's not something you can stick a label on.

My dd is the same. Bright and intelligent. We have really struggled with transition to 6th form. She appears to be fine.

She won’t talk in certain situations, and this includes certain teachers. It’s really hard getting the message across to school, as she’s chatty. But we have meltdowns every night and lots of anxiety.

Sindonym · 14/12/2022 09:52

Cuppasoupmonster · 14/12/2022 09:47

it would be better if MH services all had a statutory duty to become autism specialists.

What about other conditions?

I’m not saying they should only support autism. I’m saying I’m fed up of sitting in MH inpatient settings hearing the service say they can’t do x y and a for the patient because they don’t have any knowledge of autism. In 2022 inpatient units have so many people with autism landing up in them that they should be able to cope with autism as well and not require a long wait for a specialist service far from home (which will probably be not very good and not very specialist and making a tidy profit).

drspouse · 14/12/2022 09:52

most autism services or events would be completely inaccessible to him.

This really annoys me too. We have some SEN services in our area run e.g. by voluntary groups. My DS has what would be level 2 ADHD plus a lot of autism traits. ALL the services seem to be highlighted as for ASD, probably because the person that runs the groups has a son with ASD who attends mainstream secondary school.
So they are inaccessible for those with learning disabilities, younger primary school children (including those like my DS who are upper primary but young in attitude) and those with level 2/3 ASD.

IndieK1d · 14/12/2022 09:52

xhelper · 14/12/2022 09:48

@IndieK1d Because your needs aren't as great, or even comparable, to someone in nappies lifelong who can't be left in a room alone, needing 24/7 supervision?

I have autism myself but really wish there was a different way to say it as I'm not comparable to someone in nappies ffs

But my needs are just as valid.

Why shouldn't I be entitled to support? It's not a case of needs 24/7 care or nothing. There's an Inbetween. Why aren't those of us who are inbetween entitled to care?

My parents currently help me. But what happens when they no longer can? I'll pretty much be housebound then. Wouldn't be able to attend medical appointments, etc. Why is that ok?

Spendonsend · 14/12/2022 09:53

This thread is quite heartbreaking really. Its a large group of mainly parent carers expressing that their child doesnt get the care and support they need or they as parent carers dont get the care and support needed to support their child.

If changing the words would make all the right support appear then this is something we have to do but i suspect that carers allowance will not increase, special schools will not appear, supported living will not be created and Cahms will not be accessible by changing the words.

xhelper · 14/12/2022 09:53

@IndieK1d it's not okay, but we are talking about the shit show that is our current funding set up and system we have in place, that is struggling to adequately deliver for autistic adults and children who are severely disabled

Your needs aren't less valid, but they're not comparable

Cuppasoupmonster · 14/12/2022 09:54

Sindonym · 14/12/2022 09:52

I’m not saying they should only support autism. I’m saying I’m fed up of sitting in MH inpatient settings hearing the service say they can’t do x y and a for the patient because they don’t have any knowledge of autism. In 2022 inpatient units have so many people with autism landing up in them that they should be able to cope with autism as well and not require a long wait for a specialist service far from home (which will probably be not very good and not very specialist and making a tidy profit).

As I said in PP there has been an absolute avalanche of autism diagnoses in the last 10 years, it’s probably going to take some time for services to catch up. There are many MH issues now with new ones being formed or diagnosed every year, I’m not saying it isn’t frustrating but surely you can see that they can’t be all things to all people.

Cuppasoupmonster · 14/12/2022 09:55

IndieK1d · 14/12/2022 09:52

But my needs are just as valid.

Why shouldn't I be entitled to support? It's not a case of needs 24/7 care or nothing. There's an Inbetween. Why aren't those of us who are inbetween entitled to care?

My parents currently help me. But what happens when they no longer can? I'll pretty much be housebound then. Wouldn't be able to attend medical appointments, etc. Why is that ok?

But what do you mean by support? The word is bandied around a lot on here but what would it actually mean in your case?

IndieK1d · 14/12/2022 09:56

Cuppasoupmonster · 14/12/2022 09:55

But what do you mean by support? The word is bandied around a lot on here but what would it actually mean in your case?

To do shopping, housework and to be able to do things that are far more than staring at the TV all day.

Sirzy · 14/12/2022 09:58

Sindonym · 14/12/2022 09:42

I think this idea that those who are profoundly autistic are just happy blobs who don’t really have enough about them to get frustrated and upset by their disability is just another example of people having zero idea. It was the sort of thing that added to the isolation when he was younger (parents of younger profoundly autistic children - you will grow not to care!)

But wouldn’t narrowing the boxes risk that issue increasing because it will simply strengthen stereotypes?

undoubtedly in many ways it would be much easier if people could be fitted into boxes which meant everyone in each group needed the same support and it was easy to understand but autism simply doesn’t work in that way.

at all ends of the spectrum there are stereotypes. People use them because they want to try to fit people into their idea but they help nobody. We need much more focus on the individual and their needs rather than trying to group people further

Thesmallthings · 14/12/2022 09:58

That's the thing though... Even non verbal is a spectrum...
They both mean the same but have different scales.
People can have the same "symptoms" but experience them different. How can you name it something else when not one autistic person has the same "issues' as the next.

Not trying to argue and I can see that your son has extream struggles and inguess whilst I can understand the need for it to be known, I dislike the term high functioning... Because it's not high functioning but makes it seem like it's just a little quirk we have to deal with.
My parents help me greatly at 37 years old to be able to function. They make sure I'm awake. Take me places when needed. Help me financially plan and help me. If it wasn't for them I wouldn't be where I am today.

Sindonym · 14/12/2022 09:58

Unless you are heath funded (luckily my son is, but that is very rare) you pay for your support anyway in adults. No matter your level of disability. At the very least you pay a significant contribution to the cost.

Cuppasoupmonster · 14/12/2022 10:00

IndieK1d · 14/12/2022 09:56

To do shopping, housework and to be able to do things that are far more than staring at the TV all day.

Sorry I’m being a bit dense here but what do you mean by ‘support’ with housework? Is that a cleaner? And with shopping - can this be done online or do you mean somebody to take you out and about? Really not being goady, just trying to understand where the deficit is in social care.

BertieBotts · 14/12/2022 10:01

I think non-verbal is confusing things, isn't it? The cause of this can vary so much in autism. It can be a reaction to stress/anxiety, and therefore affect people who are otherwise able to express themselves articulately (e.g. on another day, with another person, and/or in writing). It could be somebody who struggles to express themselves at all but they understand everything, they just have different ways to communicate (which of course represents a huge barrier). However, it might also be a reflection of the fact somebody has very little understanding of language or the world in general. These are totally different situations but may all come under the banner of autism.

Using "non verbal" as a marker for severity of autism is really unhelpful.

I know when I was younger, autism tended to bring to mind somebody who had severe learning difficulties, who may remain "childlike" in many aspects into adulthood, who has little understanding of the world and therefore cannot do many tasks for themself and will always need care because for instance they do not recognise danger as simple as crossing a road.

It seems this presentation is behind much of the fear around autism, particularly going back 20 or so years, feeding into things like the Wakefield vaccine scam and various other fringe movements (many of which still exist), the whole narrative that autism is an awful, terrible thing which ruins lives. The search for a cure and cause/identifier specifically so it can be eliminated. Autism Speaks. ABA as a brute force method to eliminate autistic behaviours. etc.

That's a problem because of course, autism isn't always like that, and arguably the cause of the most difficult of those issues is the learning difficulties, not the autism (if I understand correctly, please correct me if I'm wrong). You can completely understand somebody who is autistic without learning difficulties feeling upset at the idea they might be considered something to be eliminated.

Therefore the group of autistic people who are able to express themselves, whether only online or in person, started speaking out to represent another side to autism, without learning difficulties (or with a less severe type of learning difficulty, such as slower processing speed, which is not the same as a lack of processing ability). And that has led to a shift in the public perception of what autism means, and a whole lot of autism positivity, which is helpful but can lead to a skewed perspective, just in the opposite way.

But then there is another side too that muddies the waters in between. Because many children and adults with autism, without necessarily having learning disabilities, can struggle with meltdowns, (that doesn't mean tantrum, but a complete sense of overwhelm resulting in a loss of control) that are so disruptive and/or violent that they can restrict life very much - certain situations, places, actions, foods, textures, sounds, a whole load of things that will be different for different people - must be avoided in order to help avoid or reduce triggering meltdowns, other family members or teachers or anybody interacting with the person (esp child) have to be aware of interacting in a certain way, e.g. for a PDA presentation avoiding or minimising demands - although yes, it's true that autistic preferences and needs are no less valid than neurotypical preferences and needs, it can be extremely difficult and alienating being autistic or having an autistic child, it can take a lot of time and effort to understand what the specific person's needs and triggers are, and they might change over time. While in theory somebody with autism could live a perfectly happy life when neurotypical demands aren't being made of them, that's not how our world is set up and so being autistic is always going to be difficult in some ways.

Sindonym · 14/12/2022 10:01

Non-verbal is not a spectrum. It is a problematic term for various reasons, but being mute from anxiety or being overwhelmed is not the same as not having the language to speak or understand. It’s a completely different thing. My son’s language assessments put his understanding of language at about the same as 12 month old (which is a nonsense way of reporting it, but it highlights the difference).

ohioriver · 14/12/2022 10:05

I need reasonable adjustments to enable me to work. In order to get this I need to declare my "registered disability" which is, in this case, my ASD.

I also needed it to enable me to access university. Back in the day.

I pay for a cleaner.

dizzydizzydizzy · 14/12/2022 10:05

parsniiips · 14/12/2022 01:50

What's important is that the persons needs are identified and met. The spectrum helps to identify which areas someone needs support with.

Autism is autism whether someone is highly affected by it all of the time, or doesn't feel the impact so much unless they are in certain situations. They still meet the criteria for that diagnosis.

Just as cancer is cancer, whether it's grade 1 or untreatable, it's still the same condition but each individual will need a personalised plan to treat them.

Or depression is depression whether someone is plodding along and managing to cope with support, or they are suicidal and need a high level of care.

Asthma, some people have minimal/intermittent symptoms others more persistent symptoms and some even affected by it day in day out just doing things like walking up some stairs. It is still asthma.

There are lots of conditions that have a main umbrella name/term.

I don't think it would be helpful to start trying to separate autism into 'mild' 'moderate' 'severe' categories and trying to make more detailed diagnoses.
Autism affects everyone differently and can also evolve and change as a child grows up and experiences different environments, expectations and levels of pressure.
I think it's hard enough accessing support for those who have SEN without having to drill down further into each individual diagnosis just to give it another name.

This. I have just been diagnosed with autism. I work etc.

I also have ME/CFS which varies from you cannot get out of bed ever to, you can't do everything you want to do.

xyhere · 14/12/2022 10:06

Thesmallthings · 14/12/2022 09:23

I can see your point to an extent.
However I would be classed as high functioning with autism and ADHD Iv worked full time. Been married had two children.
But.. what you don't see is when I get home and can no longer function.. I go non verbal.. I can't decided if I need to use a spoon or fork so I just won't eat. The amount of debt and trouble managing money. The thoughts of unaliving because I just can't cope.
The constant replay of a script I play in my head to be able to communicate with others, having to really think about and work out what some one means.
The amount of bullying I had growing up and as a adult. The number of jobs iv lost it had to leave as I couldn't handle the over stimulation.
There's so much more..
So yes I can put a mask on...but it's tiring and gets harder the older I get.

Autism is a spectrum.... We all have different levels of support needed.

Exactly. And...we all have support requirements in different areas and on different days.

Autism isn't a static condition. Outwardly, I can be perfectly able to get through a day without anybody noticing I'm autistic. Hell, I might be able to do a couple of weeks, if I'm careful about it. Then the effort will take its toll on me, or something will happen that wrecks the balance I've worked so hard to keep on a knife-edge, and I'm useless to everyone for a day, two days, sometimes a week. Bingo - "high-functioning" to "non-verbal and low-functioning" within the space of hours.

The NT world doesn't allow for that, though - you can't take short-notice holidays without arousing suspicion, you can't have days off sick for it without triggering HR goons, and nobody's interested unless you have a note from a doctor (who won't give you one, because they refused to give an adult a diagnosis referral).

I've got a successful career, earning a ridiculous amount of money for what I do, yes. But on the way to that, pre-diagnosis, I also had to quit jobs I loved because I was being found out and had no tools with which to cope or explain what was going on in my weird alien brain, so I've had little stability or continuity. How do you explain unpredictable periods of hyperfocus and inactivity to a world that expects you to have consistent levels of output all day, every day?

I'm married, but it's been a massively stressful and trauma-filled journey to get to the happiness we currently enjoy, for all concerned.

It's easy to spot the NT contributors to threads like these, with the amount of folk who think "spectrum" is a linear scale with a confidence that significantly outstrips their knowledge of the subject. Yes, there are some autistic traits which require more support than others on average, but that's in no way the same thing as a scale with "totally normal" at one end and "Rain Man" at the other. With the best will in the world, if you believe that then you know nowhere near as much about autism as you think you do.

There's just no way to sugar-coat that one - all I can say is, please make an effort to learn more from people who experience it every day.

Thesmallthings · 14/12/2022 10:06

Sindonym · 14/12/2022 10:01

Non-verbal is not a spectrum. It is a problematic term for various reasons, but being mute from anxiety or being overwhelmed is not the same as not having the language to speak or understand. It’s a completely different thing. My son’s language assessments put his understanding of language at about the same as 12 month old (which is a nonsense way of reporting it, but it highlights the difference).

It's a scale. .. my mistake for using the wrong word... It's a scale.
When I am so over stimulated and exhausted from the day or from a meltdown I physically can not talk one one... Even with my brain going wild and wanting so badly to say something. A single word physical won't pass my lips.

What is that if not non verbal as well.