Help understanding diagnosis report

Bunny said:

my background - along with yours - is irrelevant

This is true and if people are placing much importance on the advice of randoms on the internet then they are likely to experience a world of pain.

There are some on this site who advocte retuning to the oppressive catholic church doctorines of the last century, to bottle up any feelings not sanctioned by the bible etc - clearly not a healthy approach in todays society.

Some are pessimists, some offer positivity but nothing hepful etc.

It can only be hoped that those coming here for advice are smart enough not to trust in without verification is the point I'm getting to.

Bunny said:

I hope we can now move forward from this as friends, or at least as cordial acquaintances

I harbour no bad feelings towards you and hope we can find a mutual respect for one anothers positions while engaging in debate where merited.

Thank you for a balanced and refreshingly researched response.

Thank you for your reply, Iain.

Your original post contains a bunch of inaccuracies, stated as facts. They include: the nature of the DSM-5 (actually an American publication); its usage; when the levels 1-3 were introduced (actually in 2013, not 2022); why some practitioners may not be using DSM-5 (which is not because it's "very new"). It also omits some key information (see below).

The most concerning inaccurate claim for me - and the reason for my original reply - was "1 indicates you don't need much support at all". This was clearly a biased / opinion-tainted misrepresentation of the actual definition (fact) of the diagnostic level. 

Let's remember the context: the OP had asked for help in understanding a new diagnosis. Your reply was to another recently diagnosed forum member, who hadn't been given any levels within their diagnosis. Like me, these are people who are at the early stages of coming to terms with their diagnoses and working out how to interpret and respond to their assessment reports. Accuracy, not to mention supportiveness, is key.

That particular comment made me very angry indeed. I would have preferred to not get involved in any disagreements here, but it also struck me as being so potentially upsetting and/or damaging to others (including many more, over time) that I felt obliged to speak up. I know we've already discussed this point (and thank you for explaining your perspective). I mention it again only to explain the reason for my original post. I should also mention that I know I have a tendency to get very upset about things that could cause harm to others - perhaps to a fault. However, I also can't help that, as it's one of my autistic traits. 

The other major diagnostic manual is the World Health Organization's / WHO's International Classification of Diseases / ICD. ICD-11 was endorsed in 2019 by all members of WHO, before being published in 2022. ICD-11 replaced the ICD-10. One key change was that the range of diagnoses for pervasive developmental disorders within the ICD-10 included Asperger Syndrome, whereas the range of neurodevelopmental disorder diagnoses within the subsequent ICD-11 does not. However, neither of the ICD manuals includes levels 1-3 for Autism Spectrum Disorder support needs.

Please be assured that I'm not trying to "demonise you" (which you said is how you feel) and I'm sorry that you feel that way.

You post a lot of great replies and provide a lot of really valuable help to many users. When I said that you speak with apparent authority, I was referring to your tone and style of communication, not to your background (experience, knowledge, etc).

Since you asked, my own background happens to include a qualification in autism. But my background - along with yours - is irrelevant (unless we are all to start adding footers to our posts, summarising our knowledge and experience). Whenever any of us speaks with apparent authority (ie seeming to be dispensing facts rather than opinions), people are likely to take them as such (perhaps here more than in most other places).

As great as the vast majority of your replies are, please be mindful of the chance that you might, occasionally, be about to provide inaccurate information and/or to misrepresent one of your opinions as a fact. And if someone does speak up to correct you, perhaps consider just saying along the lines of "my apologies, you're quite right!".

I hope we can now move forward from this as friends, or at least as cordial acquaintances - and continue our focus on helping others and/or seeking help for ourselves.

Best wishes, Bunny.

Yeah makes sense to me.

I think people (not on here or anyone that understands it) are tending to refer to level 1 as a level of function rather than need, in the same way they think a spectrum is something you can be on rather than something "is", I hear people say "on the low end of the spectrum" like it's a scale, or "level 1 like Asperger's or high functioning" all terms that can trivialise the trauma people suffer and feel a bit "ableist ".

Similar things annoy me like people  saying that they're a bit autistic, imagine saying to a pregnant person that you're feet ache so you're a "bit pregnant" so know how they feel, my wife's had two babies and I think she'd kill me.

A lot of times people mean well and don't understand their language can erode the seriousness of something.

Bunny said:

Please don't downplay or minimise their importance - presented by you, to others, as supposed fact

I was not aware I was claiming facts, only my experiences and I qualified this at the start of my post by pointing out my perspective. You are the one making statements you claim to be fact.

Giving quotes of statistics like "11-66% of autistic adults" are incredibly vague in terms of mathematical significance. Yes the subject they relate to is serious but it is so vague as to be almost meaningless.

Bunny said:

Camouflaging, for example - which you championed in another thread today - is far from a healthy behaviour.

Where did I claim it was healthy? I probably said it was a way to achieve an end, a tool if you like.

It really feels like you are trying to demonise me trying to help people lead the sort of life they are asking for.

The point I was making was that most of the level 1 autist I know can survive without specialists to support them. I even say support would benefit them.

My understanding of need in the context here is without it you can't survive. You must have a very different definition but I respect your view.

Bunny said:

you post here with apparent authority to those who are asking for our advice and support, minimising the importance of supports in favour of projecting your own mindset can be dangerous and harmful.

I am a layman - fairly well read on the subject of autism and with a lifetime of experience of it plus years of experience of working with therapists (as subject and as colleague) and with other autists.

I claim nothing more - no authority as such, just a lot of experience compared to most.

Can I ask what makes you a subject expert to be posting your views please?

To clarify, the current diagnostic standards do not refer to functioning at all - they refer to relative levels of support needs. Similarly, "high functioning autism" was never an official diagnostic term.

I was assessed and diagnosed using dsm5 and found the report is pretty good in terms of providing explanations for everything.

I also think the level 1 to 3 idea makes sense, rather than giving things another names like "Asperger's"

I don't like the term "functioning level" though , as that infers those at level 1 don't struggle , when in reality we all suffer a lot of distress and anxiety  (obviously that's likely to be worse for those at levels 2 and then 3) functioning is more a measure of "how we appear to cope" rather than cope.

I've not seen the older variants of diagnosis criteria and reports but they sound confusing in comparison.

I had a similar experience. There was an appointment where we were supposed to go over the report and discuss the findings, but I left feeling completely alone and confused.  

I didn’t feel able to phone and ask for greater clarification. To be honest, it was really triggering going over past life and experiences. I became quite unwell and by the end of it couldn’t understand how they could just leave it so open, without closure, particularly knowing I literally have nobody in my life and talk to people for about 20 hour a YEAR.

Oh well, sorry, I am playing my mini violin here!

The diagnostic term, which was arrived at by experts in the field, says "require", which means "need" - and for good reasons. If those needs aren't met, then there are consequences - whether they're visible to others or not.

Camouflaging, for example - which you championed in another thread today - is far from a healthy behaviour.

Please keep in mind that, regardless of the strategies that you have personally chosen to use, when you post here with apparent authority to those who are asking for our advice and support, minimising the importance of supports in favour of projecting your own mindset can be dangerous and harmful. Other forum users would be much better served by being educated with accurate information.

You casually say such things as:

- "Most people who qualify as level 1 had been able to survive their lives up until now without specific support for their autism which is why I said they dont NEED it"

- "the vast majority can lead something resembling a normal life even if with some limitations"

In making such sweeping statements, you ignore the impact on L1 autistic people of struggling to live their lives without the various kinds of support that they do actually need.

Not everyone survives at all, let alone manages to live "something resembling a normal life".

"Figures show that as many as 11-66% of autistic adults had thought about suicide during their lifetime, and up to 35% had planned or attempted suicide (Hedley, D., & Uljarević, M. 2018). Autistic people are also more at risk of dying by suicide than non-autistic people, with the highest risk seen in autistic people without co-occurring intellectual disability, and autistic women (Hirvikoski, T. et al 2020; Kirby, A.V. et al. 2020)."

https://www.autism.org.uk/advice-and-guidance/professional-practice/suicide-research

https://www.ncl.ac.uk/press/articles/archive/2022/04/conversationautismsuicide/

https://www.autistica.org.uk/our-research/research-projects/understanding-suicide-in-autism

https://www.rcpsych.ac.uk/docs/default-source/improving-care/nccmh/suicide-prevention/workshops-(wave-4)/wave-4-workshop-2/suicide-and-autism---slides.pdf?sfvrsn=bf3e0113_2

Let's agree, please, to leave the decision about whether or not L1 autistic people really "NEED" supports to the professionals and experts, who have already concluded that they do. Please don't downplay or minimise their importance - presented by you, to others, as supposed fact - despite it suiting your own way of thinking.

Bunny said:

Whilst their needs are lower, in relative terms, than the other two levels, they are still very real and of great importance to those with a L1 diagnosis.

Perhaps I come at this from a Gen-X perspective where there was a much greater need for self reliance growing up, regardless of any additional stressers such as autism, ADHD etc.

Most people who qualify as level 1 had been able to survive their lives up until now without specific support for their autism which is why I said they dont NEED it.

They would have benefitted from it certainly, but the vast majority can lead something resembling a normal life even if with some limitations.

If they were unable to hold a job, go out in public etc then I suspect they would be in level 2 where support is clearly needed, hence the reason for this level.

I don't deny that level 1 people do not suffer - I have had plenty of experiences in life where my autism has caused me pain, limitations and complications but I have worked on finding ways to deal with this or accept it rather than expecting outside support.

Iain said:

It is worth noting that this level (1-3) is used as more of a summary of your state. 1 indicates you don't need much support at all while 2 and 3 are progressively more support requiring.

Iain, with the greatest of respect - and whilst I appreciate that you have only learned about the current diagnostic terms very recently (per our discussion here) - I would urge you not to downplay / understate / risk invalidating the support needs of those with ASD Level 1 by stating that they "don't need much support at all".

Whilst their needs are lower, in relative terms, than the other two levels, they are still very real and of great importance to those with a L1 diagnosis.

The actual definitions are:

• Level 1 autism: “Requiring support”
• Level 2 autism: “Requiring substantial support”
• Level 3 autism: “Requiring very substantial support”

Thank you that makes sense my son is 11 and I had struggled to get him assessed as his struggles go inward and he has learned to mask. I will look into what you suggest your input is much appreciated. 

Andy said:

From what I read and understand, levels is more of an American diagnostic thing,

The DSM 5 is an international effort to standardise the approach to diagnosis and treatment of mental disorders and it is very much what the UK follows.

The levels 1-3 for autism were introduced in 2022 so it is a very new thing. There is some coverage of this here:

https://www.autismspeaks.org/autism-diagnostic-criteria-dsm-5

A lot of the practitioners in the UK may not be following the current guidelines as this is very new, but I would expect you could go back to them to ask for an update based on the current DSM5 guidelines.

It is worth noting that this level (1-3) is used as more of a summary of your state. 1 indicates you don't need much support at all while 2 and 3 are progressively more support requiring.

Interpriting the results of the ADOS-2 and ADI-R tests require an understanding of the context of the patient. There are impacts from age (ie you have had more time to develop coping mechanisms so tend to score lower) and your environment can play a part so the psychotherapist needs to understand how to interprit these correctly to give you meaningful feeback from it.

I would recommend engaging with a psychotherapist with training and experience in this area and going over the results with them - they should be able to explain a lot in one session, possibly two and give you some good pointers on how to work on the areas where you struggle.

It is quite possible a longer term therapy based approach will give best results - it certainly did for me.

Thank you for the reply, yes I must admit I’ve googled like crazy and haven’t found anything other than what the levels are, it’s reassuring that you didn’t get a level either.

I think I was expecting to get more of an understanding of how the diagnosis and perhaps expected some sort of closure instead I feel like I’ve been left with more questions than answers. Yes I think a call to ask for some help with understanding the report is my best option. Thanks for the help. 

I was wondering about the levels also and wondered why some people say they were diagnosed with level 1, 2 or 3, but on my report it didn’t have that. 
From what I read and understand, levels is more of an American diagnostic thing, although some diagnostic practices in the UK might give a level. In the UK the emphasis is more on identifying specific individual support needs rather than categorising by levels. So I wouldn’t worry about the levels. 

As for the scores, I’m not entirely sure, and you might want to go back to the people who assessed your son to ask them. Sorry I couldnt share any light on this.

Thank you for the reply, basically what I’ve read online the diagnosis should have a level given, 1 2 or 3. In report he was given a score of 14 in the ADOS-2 7 and 7 in the 2 areas. The ADI-R he scored a.16 b.15  c.7 d.4. The doctors when taking us through the diagnosis said the scores were high but never said anything else and I never thought to ask as I thought it would be in his report. 

Hope that all makes sense and again I appreciate the reply. 

There is a very good article explaining the scores here:

https://embrace-autism.com/a-summary-of-the-autism-tests-and-scores/

The main bit I suspect you are interested in is Autism tests score interpretations

The rest of the article explains the other bits around this to give more context for it.

Are there any areas in particular you want help understanding?