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.

Labels aren’t going to reduce anything. Cases look at need and issues for an individual not the name of a condition. My DD’s ASC traits seem to be regraded as more than just differences.

@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.

Ah yes the self-diagnosed who speak for everyone with autism. I do think there is a cohort who like to say they have autism just the same as any profoundly-affected person - there is NO difference between them - it’s just that there is something special about THEM that meant they got a job or got married in a way that other people with autism just couldn’t seem to make the effort to do.

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.

See that terrifies me. Not because I'm autistic myself. But for my son. Who can't ever graduate from using nappies, doesn't speak and doesn't meet some milestones up a 0-12 month old. Terrifies me.

Nothing 'diverse' about him. And his challenges are complete and profound disability. I have troubles of my own but they just don't compare. That's not to say what I suffer is mild. But it's not the same world as DS

What is autism?

Autism is a lifelong developmental disability which affects how people communicate and interact with the world. One in 100 people are on the autism spectrum and there are around 700,000 autistic adults and children in the UK.

From the Autistic Society. Pretty clear it’s regarded as a disability.

@Barn0w1

Labels aren’t going to reduce anything. Cases look at need and issues for an individual not the name of a condition. My DD’s ASC traits seem to be regraded as more than just differences.

Country policies are not decided on an individual level, but according to "labels". What help would it be if an individual is deemed to need residential services but these services no longer exist because "people with autism should live in the community"

Fascinating thread. I don't have any insight to offer but am reading others' experiences and opinions with interest. I am sorry to read about the struggles that many of you have

It seems there is no clear answer to the debate. From the little I know about autism (and I've been learning from this thread) it seems that the professionals don't even agree about how to diagnose. For example PDA is recognised as an autistic profile by some but not others.

There is a diagnostic questionnaire for depression and anxiety which gives you scores and categorises as mild/moderate/severe. I wonder if there is anything that could be developed to show an autistic person's diagnosis and support needs in a relatively simple and clear way - something more meaningful that just "mild" "severe" "classic" "low/high functioning"... all of which have been rejected anyway... but more easy to digest than a detailed essay. I'm thinking along the lines of those diagrams that show the "spiky profile" (rather than a linear scale) but personalised. So you might have, say, 5-6 key categories (the 5-6 most common difficulties) with a score for each one (0-3?) and then it could be represented by a visual chart.

In our era of appallingly limited resources for any kind of support, there do have to be thresholds for accessing it, and there has to be some way to differentiate the severity of people's difficulties and the extent of their needs.

I don't think we should sneer at self diagnosis, though. There must be so many people who know that they (or their children) most probably have autism but struggle for years to get taken seriously by HCPs. Of course it's not a proper diagnosis until you get a formal assessment. But that doesn't mean people who say they (or their child) are autistic are always just jumping on the neurodiversity bandwagon.

I should point out that a major reason that I'm interested is that I suspect DC1 might have ASD/PDA. But it's too soon to tell. And I very much doubt he'll meet the threshold for an assessment on the NHS, let alone any support.

However, I'm not about to join an advocacy group and start arguing semantics and shouting down people with an actual diagnosis and significant difficulties... horrified at the thought!

Some people are just twats, it seems. I often reach this conclusion on mumsnet and in RL

When people with learning disabilities are diagnosed, it’s stated if mild, moderate or severe. It does not generate the same level of debate as this topic but believe me, people who have LD have a hugely diverse range of needs.

@Barn0w1

Labels aren’t going to reduce anything. Cases look at need and issues for an individual not the name of a condition. My DD’s ASC traits seem to be regraded as more than just differences.

I understand your overall point but a diagnosis (or even a description of needs) is key to accessing some types of services. If we are going to ensure services meet the needs of a specific group, we need to have a some idea of what the needs are.

But Micksrooni there are so many hard to quantify autistic traits. Then you get masking which many girls and women do. One trait of autism might be mild, another severe. I don’t see how you can give an overall level.

@Floundery
Thank you. He doesn't really have issues at school atm but we've raised some concerns about his behaviour at home and school has been supportive so far.
The GP did actually refer us (much to my surprise!) but the referral was rejected, we got a detailed letter explaining everything they need before they will accept a referral.
My gut feeling is that he'll be diagnosed eventually but it might not be for a while.

I understand your overall point but a diagnosis (or even a description of needs) is key to accessing some types of services. If we are going to ensure services meet the needs of a specific group, we need to have a some idea of what the needs are.

I think the problem here is the idea that the needs of a 'group' need to be met. That's not the case. Each individual has different and varying needs.

The level thing is not important on a professional level at all, because nobody is treated the same based on any diagnosis. That's goes for all neuro diversities; physical conditions and mental health issues. So the only reason I can see people arguing for functioning labels is to 'explain' to ignorant outsiders who don't matter anyway.

@santasmuma Thing is, it has become clear that more people are able to function independently or with a little support than not, and being completely disabled in every area by their autism.

My DS can't mask because he doesn't have the option or know what that is. He will never be out of nappies, can't speak, can't communicate.

I think there needs to be a separate diagnosis for that particularly type of autism that my son has - Where you are completely trapped because of the disability and unable to communicate at all, not even if it meant getting stressed and unable to cope. He literally can't do it

@lookforthespace

Why do you need another diagnosis though?

Let's take osteoarthritis as an example. It's a physical health condition that can vary in severity and symptoms can come and go. Some people will be crippled by this and in pain all the time, others will have less pain and more mobility. Each person is treated medically according to their individual needs. The person who can no longer walk due to the arthritis does not need a separate diagnosis.

Osteoarthritis has 4 stages depending on how much wear and tear there is to the joint and people travel along the stages. Stage 4 being the most severe. So although
there isn't a separate dx it is staged in regards to severity. They aren't able to travel backwards along the stages unless they have say a hip replacement. Generally it's a condition that develops during life and can be eased with medication, possible operations etc. People generally get it in older years due to using their joints, they live their lives and can have children, carers..... Autism is life long, people who have severe autism have it their whole life. It is highly unlikely these people will have children or careers and people with autism do not get more severe as with wear and tear.

@Justrealised

Osteoarthritis has 4 stages depending on how much wear and tear there is to the joint and people travel along the stages. Stage 4 being the most severe. So although there isn't a separate dx it is staged in regards to severity. They aren't able to travel backwards along the stages unless they have say a hip replacement. Generally it's a condition that develops during life and can be eased with medication, possible operations etc. People generally get it in older years due to using their joints, they live their lives and can have children, carers..... Autism is life long, people who have severe autism have it their whole life. It is highly unlikely these people will have children or careers and people with autism do not get more severe as with wear and tear.

My apologies. I had absolutely no idea this was the case with osteoarthritis and I used that in my example as I genuinely thought I knew as much as I could about it. DH was diagnosed with this about 8 years ago but has never been 'staged' or anything like that. Maybe we need to be going back to the consultant then, but that's another story!

I'm not for or against separate labels within the autism diagnosis tbh, I just can't see any solid reasons as to why it would benefit any single person.

But yeah, I guess my example wasn't very helpful after all.

[quote santasmuma]@lookforthespace

Why do you need another diagnosis though?

Let's take osteoarthritis as an example. It's a physical health condition that can vary in severity and symptoms can come and go. Some people will be crippled by this and in pain all the time, others will have less pain and more mobility. Each person is treated medically according to their individual needs. The person who can no longer walk due to the arthritis does not need a separate diagnosis.

[/quote]
But a person with mild osteoarthritis will see that it is mild compared to a person incapacitated with severe osteoarthritis. No one objects to the severity being defined or campaigns for equal funding across all levels of severity (although I’m sure some do!). The trouble with the very loud autism advocates - often self-diagnosed - is that they won’t accept that there is any level of autism more severe than theirs. They’re just better at coping with it apparently.

My non autistic son has been diagnosed with moderate learning difficulties and I agree that it makes things a lot simpler when talking about his needs than it is with my autistic dc. Although you still get some people who like to play special needs top trumps and unofficially diagnose their child/family member/random person they saw on the bus with the wrong category of learning difficulty. Or you get people like my MIL who tell anyone who will listen "well the drs say he's got moderate learning difficulties but there's not much wrong with him really".

I do wonder if it would help if everyone who wanted one could get an autism assessment? Whether that would stop the self diagnosing? My 13 year old has no official diagnosis of autism because we can't get him assessed but someone from camhs has admitted that he displays a lot of autistic behaviours and probably has autism.

Also I think that the lack of funding in schools and the community has meant that desperate parents/carers have become used to fighting for help for their children. I find myself that it's hard to get any kind of help for my 15 year old who masks well. My 13 year old gets help for a while when he has a violent meltdown or self harms but then it gradually disappears again. I don't know what it's like for children with more severe needs, probably some support but not nearly enough I would imagine.

@santasmuma

I understand your overall point but a diagnosis (or even a description of needs) is key to accessing some types of services. If we are going to ensure services meet the needs of a specific group, we need to have a some idea of what the needs are.

I think the problem here is the idea that the needs of a 'group' need to be met. That's not the case. Each individual has different and varying needs.

The level thing is not important on a professional level at all, because nobody is treated the same based on any diagnosis. That's goes for all neuro diversities; physical conditions and mental health issues. So the only reason I can see people arguing for functioning labels is to 'explain' to ignorant outsiders who don't matter anyway.

You’re right but services are funded and designed in a way that cannot possibly meet individual needs. You need to group people together in a broad way before you narrow it down. For example, if you have a diagnosis of a learning disability and you are an adult, you meet the eligibility criteria for assessment from your local authority community LD team. This is the part where you should receive an individual service. Your assessment would be different to someone else’s. It’s personalised.

I agree nobody is treated the same way or they shouldn’t be! Levels are somewhat useful but they are only a small part of the picture. It’s useful to know if a person has a severe LD, for example, as the way one would communicate or approach may be different.

Rather coincidentally, this article was published today in regards to the Lancets recent article outling "profound autism".

www.statnews.com/2021/12/07/labels-can-harm-but-they-also-can-help-see-profound-autism/?fbclid=IwAR2rnnihg8cGOP-u0LipWZ3pHvp0Un_BgHWQytWfHWaAXNL-jmS5axMPUVQ

"The term profound autism is intended to describe autistic people who are likely to need 24-hour support throughout their lives. The goal of introducing this designation is to provide more specificity to the extremely broad autism spectrum to equip parents, service providers, and the public with the language necessary to ensure that individuals with autism receive the accommodations and interventions they need. Concise, meaningful terms like profound autism will simplify the process of determining appropriate care, leading to quicker and more forceful interventions."

The person who can no longer walk due to the arthritis does not need a separate diagnosis.

There isn't a very vocal contingent of people self-diagnosed with arthritis shouting that arthritis isn't a disease and doesn't need to be "treated" because it isn't an illness, just a difference. That's why autism is different.