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

[wiklowarrior]

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.

@santasmuma is "
However, have we an element of co morbid learning disabilities at play here?"

Is this in regards to you, me of the person I care for? Or are you trying to evoke a response that you're not getting in other ways?

If it's me, not that I know of, suspect of or have been suspected of. University educated.

If you have ld, that's your business.

The person I'm thinking of, no not as such just autism (unless you class autism as a ld?) and the impact that has as a difficulty in their ability to learn. No learning disability either, just autism.

You may want to read some of the earlier posts regarding comorbid conditions, I take it you agree autism is separate to other dx inc learning difficulties?

You may also want to look at the post I made with NCSA links.

Is this in regards to you, me of the person I care for? Or are you trying to evoke a response that you're not getting in other ways?

I meant the person you were talking to and it was not an unreasonable question.

If it's me, not that I know of, suspect of or have been suspected of. University educated.

If you have ld, that's your business.

I don't.

The person I'm thinking of, no not as such just autism (unless you class autism as a ld?) and the impact that has as a difficulty in their ability to learn. No learning disability either, just autism.

No I don't decide to class autism as a LD. I was simply asking if the person you were talking about had LD. again; not an unreasonable question.

@Elephantsparade u see your point but for it to be known that they are severe in 2/3 and moderate in 1/3 they would have been assessed as such.

Maybe you're on to something and the dx should be broken down into the three areas and the three areas defined by themselves? That would give more info about the persons needs.

I agree about using the word profound and do use it. I do also use severe depending on who I'm talking to.

Person 1: autism dx (aspergers given as a child) married, has children, has a career, has a mortgage

The thing is, all of the bits you're using to describe person 1 are outward appearances that NT people expect. What it does is ignore the impacts of the Asperger's.

In my case a marriage that's in pieces because I can't cope or mask since having DC. A job that's my sanctuary because it is routine and gives me something to cling onto. A persistent sense of failure that I'm not a good enough parent to DC and that I'm to blame for DCs ASD despite loving them more than anything ever.

The person 1 description doesn't include the meltdowns (usually internalised) when something changes, e.g., the shopping delivery doesn't turn up and I don't know what to do. It doesn't tell you that my career involves not remaining with the same team for more than 2 years because it just gets too hard. It doesn't tell you that I've had to take unpaid breaks from work when I can't cope any more. It doesn't tell you about my MH. It doesn't tell you about the times I'm selectively mute because the words won't move from my brain to my mouth so I sit there feeling like a desperate fool. It doesn't tell you about my sensory issues with clothes and heat, how I dread each summer. The need for extreme repetition when stressed and to just be able to sit alone without those around me feeling rejected. It doesn't tell you how miserable my life is a lot of the time despite appearing to tick all the boxes because I just don't fit.

Marriage, kids, career and mortgage is not a yardstick of impact, it's a yardstick of how well you can hide in public.

That said, I do see the benefit of having some sort of nuance of diagnosis although I've no idea what it could be.

My sons diagnosis is simple ASD but the document that came with it does break it down into the three areas and does say the level of support he might need in each area but its not quick to read through.

On documents and emails i say 'verbal autism, with low personal care need but high level of risky behaviours and limited understanding' its not very snappy.

Why does it matter if they don’t have a different diagnosis? Your child isn’t going to be getting any difference in their care.

YANBU

I have 3 dc who have autism without learning difficulties. All with very different needs. I don't think lumping all autistic people into one category does anyone any favours tbh.

@Percie they were just made up examples designed to demonstrate the difference in how people with the same diagnosis can present and how their needs are different.

@Elephantsparade I agree that in giving so much detail it takes time which is why I've been advocating for a separate dx for those most impacted.

I find I have to give a list of details to convey my sons needs also.

I don't think there is an easy answer, if/when there is a change, whatever it is will not suit everyone.

Personally I think the group I'm talking about should be diagnosed showing a distinction. As you said it's an easy group to classify and would be a start.

@Barn0w1

Why does it matter if they don’t have a different diagnosis? Your child isn’t going to be getting any difference in their care.

My child has been denied access to autism specific groups as he is too autistic, we were asked to leave a relaxed cinema screening as his vocalisations (happy) were too much for another child with autism and it was distracting them from the film (this was a few years ago), he cannot go to the local autism specific school as he is too autistic....

So yes some facilities and services are being watered down.

If out and we need to apologise or calm a situation saying I'm sorry and examining he has autism doesn't cut it any more as the general public perceive autism as something different which isn't reflective of him.

I want him to have a dx which reflects him.

Yes it does matter, the dx conveys a message about him and it's an important message. It should be accurate and specific.

My child has been denied access to autism specific groups as he is too autistic, we were asked to leave a relaxed cinema screening as his vocalisations (happy) were too much for another child with autism and it was distracting themfrom the film

Oh, that has really broken my heart. That's not fair at all. Did you complain?

These days I say my son is severely disabled and then say what adjustments he needs or what he cannot do. I don't think saying he has ASC says enough.

I also have the experience of no activities or social provision for my child. It is more expensive and complicated to provide it for him compared to others so it isn't provided.

He has direct payments that we cannot use because no one will work with him because they can earn the same taking an easier to manage child bowling or swimming.

'My child has been denied access to autism specific groups as he is too autistic, we were asked to leave a relaxed cinema screening as his vocalisations (happy) were too much for another child with autism and it was distracting them from the film (this was a few years ago), he cannot go to the local autism specific school as he is too autistic....'

I can't believe this. I'm so sad to hear he was asked to leave the cinema

You can’t really attribute that to being services watered down. Whose to say the complaint wasn’t from another children in your group 3. Symptoms will vary. It could also have been staff ignorance. There are zero services to support my DD’s autism

@Floundery

My DS has classic autism meaning he is impacted in all 3 areas that can be impacted. I had my arse handed to me on a plate when I used this term in a mum’s group to support ND children. Their reaction to me saying “classic autism” was akin to using the disgusting “N” word in a room full of POC. I was left feeling like scum when I was trying to learn and help my child. I was kicked out of the group when I tried to explain why I had used it.

I have stayed away from any debate since then, but I agree with the OP. This “no qualifiers” mandate means that “high functioning” autistic people dominate the debate (and they are typically white and MC - plenty are also “self-diagnosed”). They don’t speak for my profoundly disabled DS and are so busy congratulating themselves on how marvelous being ND is that they won’t see the challenges and shitty lives experienced by the very people for whom they claim to speak.

I was with you until you started with the belittling stereotypes about 'high-functioning' autistic people.

I hope you find a support group that is useful to you.

I'm so sorry to hear of you and your child's cinema experience Justrealised. That was awful.

I'm very sorry to hear of your experience too, Floundery. I'm not at all a fan of 'autism is awesome'. It was probably started with the best of intentions, but it's a milllion miles away from my DC's experience too (even though he's verbal with no ID, his condition is very debilitating).

I don't know what the solution is really. I agree the term autism has become so broad as to be almost meaningless unless further explanation is added. But people vary so much that the three categories mentioned as examples upthread wouldn't come close to covering it either.

In future, it's possible that the condition will be subdivided on the basis of the genetics causing the autism? Something like the way autism secondary to Fragile X is a distinct grouping today. Even then, there will be a lot of variability within groups I would think. So I'm not sure it would help.

@Floundery

Thank you *@BessieFinknottle*

I also wonder if genetics will offer more clarity. Simon Baron-Cohen (I know, the ND club hate him too!) was interviewed in the McGuinness documentary and said that over 100 genes associated with ASC have been identified. Lots more research needed, I hope it helps future DC.

for you and DC.

I'm not a fan of the neurodiversity movement, but I'm not super keen on Simon Baron Cohen either. His ideas about "extreme male brain" theory come across as sexist to me, and haven't helped with diagnosing women, regardless of how impacted they are by autism. I was surprised to see him in the McGuinnes documentary and wondered whether he diagnosed a woman on purpose to prove a point. That is probably just me being cynical though.

Sadly the lack of access to things aiming to be accessible is an issue across the board. Ds can’t go to things like the relaxed cinema trips because he can’t deal with the noise of others. Like many he is stuck in a situation where most of the world is inaccessible to his needs one way or the other.

@Barn0w1

Why does it matter if they don’t have a different diagnosis? Your child isn’t going to be getting any difference in their care.

Of course they are!!

One huge difference in care, at least in the US where I live, is that the push for "community inclusion" has meant that there are now so few residential programs ( because residential homes, even with as few as 10 residents, are deemed as institutions), that families with teens and young adults with severe behaviors can be on wait lists for years. And they often have to send their kids to other states, and relocate with them or not.

And that also means that when the family faces an aggressive episode, they have to call the police and then you end up with young autistic people being kept in hospitals and medicated for months and sometimes years.

In the U.K. there is a lot of work to keep autistic people out of inpatient- CETR, Keyworker scheme, Dynamic Risk Register.

Much much more needs to be done. The government have failed to meet their own targets.

It is cheaper for someone to be held in an ATU funded via nhs than housed in the community with proper support funded via LA's. (Many people with autism do not qualify for continuing care budgets). Autism being labelled a difference rather than disability is an avenue to reduce funding. People with autism are being held in facilities for mental health which are not fit for purpose for people with autism.

www.bbc.co.uk/news/uk-59388886

Over a 100 people held for more than 20 years.

The UK will no doubt follow the US in terms of cost reduction and facilities especially as autism is being sold as ND rather than disability.