Help understanding diagnosis report

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?

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. 

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. 

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.

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!

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.