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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

Original poster

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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6
TheHappyDaze · 15/12/2022 00:40

I mean, it's simply the factual point that you can't accurately represent a 3D graph on a 2D line. That's it.

Itisbetter · 15/12/2022 00:43

Luckily we aren’t talking about graphs but about people.

TheHappyDaze · 15/12/2022 00:46

Itisbetter · 15/12/2022 00:38

Who benefits from not being able to describe the level of impact? Who has benefited from the merging of the two diagnosis? Who benefits and who loses?

I think everybody loses from the lack of clarity because it means everybody gets less understanding.

That doesn't solve the problem though that due to the complex nature of the impairment it is not possible to express the impacts on specific individuals accurately on a 2D scale or with "levels", hence why there is a spectrum to that each individual's specific profile can be assessed and expressed.

Nobody is saying that this fact means that some people aren't affected in objectively worse ways than others. That is obvious. The point is that you can't measure it in the way that the OP is suggesting whereas on a spectrum graph you can.

You can compare two spectrum graphs and in many cases would be able to say that objectively one specific person is going to find life much harder than another specific person. I haven't seen a single person on this thread disagree with that, but apologies if I have missed it.

In other cases - where the spectrum profiles have different spikes in different areas on the spectrum - it would be impossible to make such an assessment in an objective way because it would be comparing apples to oranges.

TheHappyDaze · 15/12/2022 00:47

Itisbetter · 15/12/2022 00:43

Luckily we aren’t talking about graphs but about people.

The entire thread is about OP's suggestion about how to measure people's autism against each other, suggesting we move away from the spectrum model to one of "levels". So I am not sure who you are aiming that comment at.

TheHappyDaze · 15/12/2022 00:54

To do what has been suggested would lead to yet more misunderstanding about individual people's needs because their specific needs that can be expressed as their points on a spectrum cannot be accurately expressed as a 2D scale or set of levels, in the way that say hearing loss can. Hence why it is called a spectrum in the first place.

Itisbetter · 15/12/2022 01:01

I think you have very specific ideas about how things are assessed and compared. Actually I agree that a beautiful 3d profile of each person would be a fantastic resource for everyone. Having listened and read others observations on my child’s difficulties I can honestly say unless you were able to assess with blood tests or in fact any test that didn’t involve human opinion it’s not achievable. In the absence of that nirvana I think it is important that we don’t lose the most vulnerable and ignore their increasing difficulties in being heard, seen and supported.

TheHappyDaze · 15/12/2022 01:03

But that's exactly how they make the assessment: through the extent to which people have capacities/ incapacities on each of the criteria. Of course it's possible to plot them onto the spectrum graph.

TheHappyDaze · 15/12/2022 01:07

iminvestednow · 14/12/2022 22:37

I promise you I’m not trying to be difficult or provoking (like I said everyone’s opinion is valid and mine is not more important or right than yours which is why it’s been so worthwhile staring this thread. It’s certainly given me a lot to think about and a little ashamed I didn’t realise how much people go through behind closed doors as they are able to mask) but I’m not sure I understand what you mean by more or less of a person? Recognising some people have more needs than others doesn’t in anyway detract from the person you are or the struggles you have. This is also going to be controversial but I think we need to recognise (I won’t use the phrase some people are more autistic than others) that some are profoundly more impacted and have a ‘worse’ neurological condition than others. Someone who requires constant care and supervision is surely more impacted by their condition than someone who needs to be helped and supported in other ways. In no way do I think that because my child needs more help you shouldn’t get all the help and support you need too.

And just to be clear - because apparently people are misunderstanding so much of what people have written on this thread that my mind boggles - nobody here is saying your child shouldn't get far more support than those who have fewer care needs. Of course they should and I am sure they do!

Itisbetter · 15/12/2022 01:09

Have you been assessed for autism @TheHappyDaze ? What data points could you/have you plotted? Have you ANY understanding of the limitations of IQ tests for non verbal or minimally verbal people? Have you any experience at all of totally dependent autistics who cannot work or care for themselves or keep themselves safe?

Thesmallthings · 15/12/2022 01:09

I don't think I struggle more or the same..
When I hear autism.. I think autism... I don't have a pre concluded idea on how that person is going to be.

Well that a lie... I will automatically think that there will be certain struggles...but I'm aware they could have more or less support needs.

TaysideTeuchter · 15/12/2022 01:13

Onnabugeisha · 14/12/2022 03:45

In principle I agree perhaps there should be a subtype of autism to indicate those affected in the daily self-care and continence area.

I don’t like the levels 1,2,3 posted upthread because in reading them, level 1 is a good day for my now adult DC with ASD and level 3 is a bad day. They cycle through the descriptions for those levels tbh, and often the support has to adjust with them. I’d actually add a level 4 to that list for when they have a full on meltdown that then leads to mental breakdown with suicidal impulses. But I recognise that’s really a help sheet for a very young chid, not a teen or adult.

I also agree that many getting the diagnosis later in life are not coping. There’s a lot of research on this how long term, those with ASD can develop serious mental illnesses due to the stresses of masking- which is a deceptive term really, because it’s not as easy as putting on and taking off a mask. It takes a ton of internal stress, second-guessing, and energy to attempt.

The reason why Aspergers is a term that can no longer be used and should stay on the scrap heap of history is because of its origin. Dr Asperger was the Nazi doctor that decided which children with autism lived or died. If you had the type of desirable autism which was the highly intelligent and could be useful to the Reich, you lived and were called “Aspberger’s” as in one of his. If you were not one of Asperger’s children, you were one of the “eaters”- the Nazi term for all disabled who could not “contribute” to the Reich. I won’t go into how the Nazis murdered these children unlucky enough not to pass Asperger’s tests as it is very distressing and I’ve see archive footage of a mass “demonstration” is what they called it..not “child murder” but “demonstration of the medical procedure of euthanasia”. Absolutely horrific and the images are burned into my mind for life.

So, no, I don’t care how useful a term it is, even the fact it is useful is just an echo of the Nazis calling Aspergers the “useful” autistics….it should never come back into use in my opinion.

Thank you for this post - I am a woman who was diagnosed late (36 years old) and I live with chronic depression and obesity (due to emotional eating) as a result. I would have been diagnosed with Asperger’s 10 or 20 years ago.

Personally, I wouldn’t want to be associated with Hans Asperger for the reasons stated above. The problem with high/low functioning labels is that those deemed to be ‘low’ functioning can be prevented from reaching their full potential due to low expectations; and so-called ‘high’ functioning individuals are left to fend for themselves.

Thesmallthings · 15/12/2022 01:28

OverTheRubicon · 15/12/2022 00:18

Agree. When people say 'autism is autism', it's a bit like saying 'blind is blind', when there's a huge spectrum, from shortsighted through to completely lacking vision.

It's also so typical of a more privileged group, to come in and get outraged at any suggestion that their actions are creating harm for a less privileged group.

What actions... Me saying high functioning isn't as high functioning as people think... ?
.. how is wanting support too.. taking away from others who need it as well?

I dislike the term high functioning.. because to me I don't function... I go through life burning out, hating my existence and wishing I could just be "normal'

He'll I'll settle for autism and high needs autism.

TheHappyDaze · 15/12/2022 01:30

Itisbetter · 15/12/2022 01:09

Have you been assessed for autism @TheHappyDaze ? What data points could you/have you plotted? Have you ANY understanding of the limitations of IQ tests for non verbal or minimally verbal people? Have you any experience at all of totally dependent autistics who cannot work or care for themselves or keep themselves safe?

I am autistic. So is most of my family. It affects them all in very different ways.

Itisbetter · 15/12/2022 01:33

So you’ve been through assessment, did you receive a graph or even any numerical data?

TheHappyDaze · 15/12/2022 01:48

Itisbetter · 15/12/2022 01:33

So you’ve been through assessment, did you receive a graph or even any numerical data?

I said I am autistic. That literally means I've been diagnosed. Otherwise I would have said "I believe I am autistic" or somesuch. Why would you then ask if I have been through the assessment?! Yes, of course I have. And yes my consultant used the spectrum graph to map it out and help me to understand it. We have even had discussions in my support group about how our different spectrum graphs compare as it helps us to understand eachother and ourselves better.

TheHappyDaze · 15/12/2022 01:51

And yes you receive numerical data also, for how you've "scored" in the various areas per the assessment. There is total transparency. Plus the particular difficulties of the individual in different areas are explained in the diagnosis report (which are the parts of the spectrum graph where there will be spikes).

TheHappyDaze · 15/12/2022 01:53

There is simply no way that that information from all of our assessments could be presented clearly in a model of levels, because it is assessing capacity across all of the different areas per the example graphs others posted earlier in the thread.

Itisbetter · 15/12/2022 02:09

That’s fascinating @TheHappyDaze and very different from my experience. Where were you assessed and what tools did they use?
(nb I wasn’t asking IF you were assessed the question was, given that you were assessed did you receive numerical results)

smilesmilesmilesmile · 15/12/2022 02:11

TheHappyDaze's posts make perfect sense. I personally feel I do not fit any of the levels in the first levels image presented in this thread. This is because although I do not have all the difficulties listed in all levels, I do have some from each. I am a whole autistic lerson with my own set of needs and I would not describe myself as high functioning either. Other autistic people have other different needs to me. We can't all be neatly categorised just to suit NTs.

smilesmilesmilesmile · 15/12/2022 02:12

*person

TheHappyDaze · 15/12/2022 02:18

Itisbetter · 15/12/2022 02:09

That’s fascinating @TheHappyDaze and very different from my experience. Where were you assessed and what tools did they use?
(nb I wasn’t asking IF you were assessed the question was, given that you were assessed did you receive numerical results)

I'd have to dig out the documents! Cannot remember off the top of my head.

TheHappyDaze · 15/12/2022 02:19

smilesmilesmilesmile · 15/12/2022 02:11

TheHappyDaze's posts make perfect sense. I personally feel I do not fit any of the levels in the first levels image presented in this thread. This is because although I do not have all the difficulties listed in all levels, I do have some from each. I am a whole autistic lerson with my own set of needs and I would not describe myself as high functioning either. Other autistic people have other different needs to me. We can't all be neatly categorised just to suit NTs.

I do wonder how NT people would feel if we wanted to categorise them all into three levels. 🤣

smilesmilesmilesmile · 15/12/2022 02:24

🤣

Itisbetter · 15/12/2022 02:43

I find it interesting that so many obviously high functioning autistics DON”T feel they are. They never seem to go as far as describing themselves as LFA, it’s as though there’s a stigma attached to the idea.

To be clear you simpl aren’t low functioning if you can discuss on line in the way that autism has been discussed on this thread. That doesn’t mean you aren’t facing huge challenges daily but you aren’t a LFA.

Do you think that LFA and/or autistics with significant barriers to independent living benefit from being lumped together with more able autistic people?

TheHappyDaze · 15/12/2022 02:45

The "low functioning"/ "high functioning" labels were simply to denote if the autistic person had an IQ below/ above 70. It tells you nothing else. Nobody posting here has claimed to be "low functioning" i.e. IQ below 70. But I don't think that is what the thread was about?

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