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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

Original poster

To think there needs to be a clearer diagnosis than just Autism?

344 replies

wiklowarrior · 04/12/2021 05:58

As in, 'Autism such and such'.

I'm a professional woman, had a good job (before becoming a carer), married, nice home, friends. I'm also autistic, which was once diagnosed as Asperger's (and is what I was given). That's no longer the case now. As a child, I was eccentric to other people, always played alone, unless my nightmare routine was disturbed. Spoke extensively about my favourite things in great detail. Then you'd see more obvious signs. Overall though the entire thing leaves me exhausted. It's the masking that does a lot of that.

DS was diagnosed with autism before he was 3.

He can't speak a single word, and doesn't respond to simple language communication such as 'Get shoes'. He is a complete flight risk, would run into roads in a flash. He is in nappies. Never been able to toilet train him, despite numerous efforts (of which were all very obvious weren't going to work, because he does not communicate and doesn't seem to have a desire to). He is hyperactive, climbing another danger. He runs face first into walls. Attacks me, attacks other children and just anyone really. He destroys most things I've ever owned really. But very clever at working out locks and reaching high places. I see the frustration in his face every day and it breaks my heart. My own autism is exhausting.

Can you imagine then if I couldn't speak a single word, have the ability to use sign language despite years of effort? Couldn't use picture exchange? Couldn't even POINT to what I want or need? It's obviously very much a harder deal for him. His autism is severe. And I think a label for that would be useful without having to go into detail in multiple examples of telling people about him being autistic.

He does not attend the local SEND school specifically for communication disorders because he's too disabled by his autism. He attends a very good special needs school for a variety of very complex medical and autistic needs and it's the best school for him.

Yes I know masking is hard, even for those of us appearing 'high functioning'. But at least we have the option? Surely? DS and others like him don't.

OP posts:
Justrealised · 06/12/2021 08:06

@santasmuma you are communicating on mumsnet, the people I'm talking about will never do this. You are also understanding this thread and able to articulate a response.

Justrealised · 06/12/2021 08:08

[quote Latenightpharma]@Justrealised that sounds a bit like 'what happens to autistic people who aren't non-verbal is none of my concern'. The way it was previously was detrimental for me and my family. You are saying that now your (child's) needs aren't being met, which is obviously an issue, but your solution is for us to go back to a situation where my family's needs aren't acknowledged, and you don't care about that being the case. How is that progress?

In that case, how about removing the word autism from the severe group and giving them a completely new name? If the majority of autistic people are not 'severe', wouldn't that be easier than taking away autism from the majority and adding seven or so boxes to suit a minority? Why is that never offered as an option?[/quote]
I did offer that as an option.. I said Fred. But why should they lose the autism dx, that's what they have?

santasmuma · 06/12/2021 08:09

[quote Justrealised]@santasmuma you are communicating on mumsnet, the people I'm talking about will never do this. You are also understanding this thread and able to articulate a response.[/quote]

Indeed. However previously I would not have been able to do that, and despite being able to post on mumsnet I also have quite severe non verbal episodes. I suppose I should have said I have been elements of all 3. That said your example of person 1 is unrealistic, very few people with autism for a box where they have no struggles; the defecits have to be present for diagnosis. So person 1 maybe has elements of person 2?

Sirzy · 06/12/2021 08:10

[quote Justrealised]@santasmuma you are communicating on mumsnet, the people I'm talking about will never do this. You are also understanding this thread and able to articulate a response.[/quote]
But my DS wouldn’t be able to do either of those things but he wouldn’t fit into your severe box!

Your trying to restrict things and it’s exceptionally naieve to think doing that won’t create issues for those who need support.

Justrealised · 06/12/2021 08:11

As a general reply, it seems like what is being said is that these people are needed in this dx so that others have their needs met? Why should these people lose agency and a clear descriptor for others benefit and yes their and their carers detriment as it does make life harder.

Latenightpharma · 06/12/2021 08:15

@Justrealised so why take it away from me, as it is what I have.

Justrealised · 06/12/2021 08:17

@Elephantsparade I completely understand your fear and yes I can see that happening too being honest. I don't agree with it.

But including a group of people who are incredibly different in presentation just to aid support for others and not for that groups benefit isn't right either. They shouldn't be used in that way or have their individualism sacrificed.

Justrealised · 06/12/2021 08:18

[quote Latenightpharma]@Justrealised so why take it away from me, as it is what I have.[/quote]
What am I taking away from you by saying that a group should have a different dx? How does that take your dx away?

Justrealised · 06/12/2021 08:21

@Sirzy no what I'm doing is advocating for someone I care about, who deserves to have better understanding about their condition.

Barn0w1 · 06/12/2021 08:26

Amy teacher or SENCO would need to read reports and info. They’d never go oh autism and treat all children the same. How could they?Autism has hoards of traits. No 2 people will be the same.

Barn0w1 · 06/12/2021 08:27

Abd I want my dd to have better understanding about her condition which she’s finally getting with her diagnosis. Shes being kept out of inpatient l, he’d treatment is being adjusted and improved.

Justrealised · 06/12/2021 08:29

@santasmuma I am talking about people who live their whole lives without effective communication or understanding of communication as the majority of people do, people who will never type on mumsnet etc, people who live their whole life with the severe elements, all the time, every day.

Sirzy · 06/12/2021 08:31

You can advocate without taking away from the needs of others though. It’s not a race to the bottom

WaitingForSanity · 06/12/2021 08:31

@SwanShaped
I haven't seen that paddy programme yet but usually people don't receive a diagnosis from a simple questionnaire. I had an assessment which lasted 4 hours. Of asking me questions, filling out some questionnaires. Asking me about specific childhood experiences, work experiences, relationships, communication, doing different kinds of tests, mental tests, visualisations activities. They also spoke to my wife and asked many questions.
It was incredibly thorough before I received a diagnosis.

santasmuma · 06/12/2021 08:32

[quote Justrealised]@santasmuma I am talking about people who live their whole lives without effective communication or understanding of communication as the majority of people do, people who will never type on mumsnet etc, people who live their whole life with the severe elements, all the time, every day.[/quote]

And I'm talking about me, who many years ago, may have fitted that box. Please don't be dismissive of my past because I can post on mumsnet. I was completely non verbal for many years. It's not uncommon for people to change.

However, have we an element of co morbid learning disabilities at play here?

Justrealised · 06/12/2021 08:33

@Barn0w1

Abd I want my dd to have better understanding about her condition which she’s finally getting with her diagnosis. Shes being kept out of inpatient l, he’d treatment is being adjusted and improved.
Great, I mean truly. having a separate dx for someone who is different to someone vastly different to her won't remove that, why would it? It would help those families though.
Latenightpharma · 06/12/2021 08:35

@Justrealised because the way this is argued, including by you earlier in the thread, almost always ends up with saying that we have to show that certain people are 'severe'. I have no issue with the fact there are people whose autism affects them more profoundly than it does me, but others do. You tag someone severe, and others immediately become 'mild'. And the way that is always interpreted is 'doesn't need help'. It ends up with the functioning of one autistic person being compared with that of another autistic person, instead of being compared with the functioning level of neurotypicals, which is a big issue for accessing support.

You did this yourself by presenting those three boxes earlier. Being married doesn't mean you need little support. My aunt and uncle are married and they need daily care and supported living. Yes, they are more independent than someone who is in a wheelchair and will hurt themselves if they try and leave the building on their own, but they are miles away from neurotypical married people who live their independent lives. They are not your box 1. Yet they have aspergers.

Barn0w1 · 06/12/2021 08:36

Yes it would. In the past her needs wouldn't have been recognised.How is her having the diagnosis she deserves impacting your child? They have different needs and will be accessing different services.

Coronawireless · 06/12/2021 08:44

@Justrealised

Personally I would class severe autism as those who are severely impacted all the time by their autism. Social interaction, communication and repetitive behaviours. If your ds is severely impacted by her mental health I would say she has autism and severe mental health needs. Eg autism and severe anxiety, autism and an eating disorder,

The distinction is important, it's different, it's a different diagnosis and a different meaning conveyed with it. It doesn't mean I don't think your ds should get support or funding etc. Having a way to easily communicate to others that someone has autism which equates to "low functioning" or "severe" or "profound" is needed whether it's those terms or some other wording. There needs to be a distinction in the diagnosis as, as others have said the dx is now all but meaningless.

So articulately stated.
Sirzy · 06/12/2021 08:54

One of DS comorbid conditions is ARFID, for him he is in the small group where it means he is primarily tube fed. But I wouldn’t try to take away from the needs of others with the same diagnosis who can still eat enough orally to survive or say that DS needs a different diagnosis. It’s the same condition just different presentations.

The most I may say when talking to someone is he is an extreme case simply to stop others worrying that it’s what to happen to their child.

Justrealised · 06/12/2021 09:19

[quote Latenightpharma]@Justrealised because the way this is argued, including by you earlier in the thread, almost always ends up with saying that we have to show that certain people are 'severe'. I have no issue with the fact there are people whose autism affects them more profoundly than it does me, but others do. You tag someone severe, and others immediately become 'mild'. And the way that is always interpreted is 'doesn't need help'. It ends up with the functioning of one autistic person being compared with that of another autistic person, instead of being compared with the functioning level of neurotypicals, which is a big issue for accessing support.

You did this yourself by presenting those three boxes earlier. Being married doesn't mean you need little support. My aunt and uncle are married and they need daily care and supported living. Yes, they are more independent than someone who is in a wheelchair and will hurt themselves if they try and leave the building on their own, but they are miles away from neurotypical married people who live their independent lives. They are not your box 1. Yet they have aspergers.[/quote]
I gave three possible examples not categories or boxes in order to demonstrate differences in presentation of the same dx. You are misrepresenting what i said.

I think for the group of people I'm talking about the social model which I think you're alluding to isn't practical or relevant.

I have said I don't agree with the use of mild for those with a dx a couple of times.

The truth is though there are people who are more profoundly/ severely impacted by autism. This shouldn't be overlooked or hidden or not acknowledged because others feel it under represents them or lessens their dx. If they are able to articule this, they are impacted to a lesser extent. Why does their needs and their best interests have to be prioritised over the other group with their needs secondary?

Justrealised · 06/12/2021 09:24

@Sirzybecause AFRID as a dx communicates quite well what it means to other people and it can be quite easily worked out that some may be peg fed and some may live on breadsticks and McD's nuggets.

That is also your choice and you do quantify by saying he is an extreme case. I'm also not taking anything away, I haven't said autism should be removed as a dx I've said some of the group should be dx with a separate dx that conveys easily the impact their dx has.

Justrealised · 06/12/2021 09:26

@Barn0w1

Yes it would. In the past her needs wouldn't have been recognised.How is her having the diagnosis she deserves impacting your child? They have different needs and will be accessing different services.
So why does it matter if they have a different dx?
winchfem · 06/12/2021 09:36

From what I read when I first got diagnosed several years back, the reason why Asperger's as a separate diagnosis was phased out is because there's no clear line between 'Asperger's' and 'classic autism'- the distinction depended on the professional's opinion rather than a set of specific symptoms. I was diagnosed simply with autism though it was said a few years earlier it would have been Asperger's- which fits me far better than Asperger's ever would have as I am unlikely to ever live independently and suffer with periods of being nonverbal and regular meltdowns. There was no leeway for the way people's functioning levels changed in different situations or the way some people experienced totally different symptoms to others without either necessarily being 'better' or 'worse'. I think the latest trend of specifying by support needs- high support needs, medium support needs and low support needs- better describes the differences as while all autistic people express the condition in a wide variety of ways, it is one single condition.

Elephantsparade · 06/12/2021 09:40

[quote Justrealised]@Elephantsparade I completely understand your fear and yes I can see that happening too being honest. I don't agree with it.

But including a group of people who are incredibly different in presentation just to aid support for others and not for that groups benefit isn't right either. They shouldn't be used in that way or have their individualism sacrificed.[/quote]
I certainly dont want to use the most vulnerable people with the most significant care needs as an aid for support and i can see your point.

But i suppose thats the crux of it - i dont feel the severe autism group are incredibly different in presentation to all other people with autism who are not severely affected in all areas all the time. I can just see they are easy to categorise.

The gulf between a person severe in all areas and someone severely affected in two areas but moderatley affected in one area doesnt feel so significant they no longer need the same core diagnosis to me.

I dont know the answer. I always quite like the idea of profound autistim as a term over severe autism.