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Diagnosed but confused about why

Ms Mystery

So basically I got the results of my assessment yesterday and the test scores were as follows:

Autism quotient: 3 (cut off for ASD - 7 and above)

Empathy behavioural scale: 30 (cut off for ASD - 30 and below)

ADOS assessment: 2 (cut off for ASD - 7 and above)

The content of the written ADOS report reads as though I'm not going to get a diagnosis "range of good communication skills She used gesture very well with a range of informative / descriptive and emotional gestures ..... well integrated with her conversation and appeared natural... used humour appropriately...good understanding of story and characters' intentions... showed regard towards examiner... did not present with any stereotyped behaviours or restricted interests ... articulate..." apparently I made good eye contact at first that drifted a bit, but basically you can see the result above, I got a 2. It does point this out and goes on to say that autistic women sometimes don't fail the ADOS and that it is considered as part of the overall assessment and in combination with the other assessor.

The other assessor's report had a number of factual mistakes and I don't believe her interpretation of my childhood hobbies as "special interests" was appropriate, nor my collection of a particular brand of toy animal as a child clinically significant as it is not as though this was the only thing I played with. She also falsely states that I had a collectible map of a tv programme that I liked (I said that I liked the title credits which featured a map) and at one point she says that I don't like being hugged when in fact what I was saying was that most of my friends don't like being hugged so I don't often hug them unless they are emotionally distressed or there is a special reason to do so. From the report I don't get the impression that she was fully listening to what I was saying. I do agree with the clinical history of unexplained anxiety being an indicator and maybe the past history of recreational drug use in my early 20s is also relevant? I don't know. It goes on to scold me for how much I drink (20 units a week) as well. But she also talks about how I don't have difficulty reading other people's intentions, have a circle of close friends, good working relationships, appreciate sarcasm, puns and irony well etc. 

The thing is,reading the report, it's like it is all going one way and about to lead towards the conclusion that I don't have autism but maybe have some autistic traits or something, but then it ends with "____ is a 31 year old lady who presents with difficulties in reciprocal social interaction, social communication difficulties and a restrictive pattern of interests" and goes on to give me a diagnosis of aspergers (which I didn't even think existed anymore???)  I have shown the report to four friends who all agree that it is unclear how the,assessors came to their conclusion. Two of these friends are of the opinion that I am definitely not autistic and the other two are unsure. 

Based on the content of the report I don't really agree with the diagnosis. Based on my lived experience.... I am unsure about whether I am autistic or not. I have a few traits but not others. The main factor that makes me think that I might be is the otherwise unexplained anxiety and depression. But basically this report has left me just as confused and unsure about it as I was before I went for the assessment. Also like what is going on with the aspergers thing? It literally says I meet the criteria for aspergers syndrome but the NHS website says that aspergers doesn't exist. 

  • Hi Ms Mystery, I can understand your reaction to your report; it does seem like the evidence doesn't lead to the conclusion as Boating_Taxonomist said. This is the first instance I've read here where the story is this way round; there are many stories on this forum where people are complaining that they got a negative diagnosis but strongly believe that they *are* autistic. Reason for saying that is it seems to indicate that the NHS (your's was?) diagnosis process is generally pretty stringent; that's not to say there's "a high bar" just that they are quite careful to give diagnosis only where appropriate.

    It's almost like they cut & pasted the conclusions from someone else's report onto the end of yours! But I'm not seriously suggesting that.

    This bit is odd too "She kept telling me that most people want a diagnosis and why did I go there if I didn't want a diagnosis". It doesn't seem right, somehow. It seems to imply that they will give a diagnosis to anyone who turns up because that implies that they want one - and we know that this isn't the case.

    ADOS is also known as a gold standard test for autism, and as such I think its scores are usually given a lot of weight, so it's really surprising to see you get a positive diagnosis with a score so far away from the threshold.

    As I say, I can see why you're shocked and confused.

  • in reply to raspberry

    To be honest I was shocked that I got such a "low" score. I am like... hyper empathetic in some ways. I get upset if I see somebody squash an insect and I get very upset for other people who are in physical or emotional distress. I also think I have quite good theory of mind. But I am blunt and tactless and refuse to change as I am determined that if I just keep trying this approach eventually people will learn to appreciate my honesty, lol. 

  • in reply to Ms Mystery

    PS I “only” got 26 on empathy quotient so not much under.  In my opinion that’s because we do have empathy (shock horror) but struggle with it in different ways. I’m definitely autistic but very far removed from your classic view of it! 

  • in reply to raspberry

    Really helpful. Thank you. I think I will email them as the outcome appointment was totally useless, but also I think potentially that was partly because they were surprised by my reaction and maybe didn't go into as much detail as they otherwise would have. Also I think I just voted my own post up by accident. Definitely autistic :-p 

  • I got diagnosed with Aspergers a few months ago as my local NHS centre used icd-10. 

    I hope you can get some clarification at a pist diagnostic support session?

  • in reply to Boating_taxonomist

    Thank you. That is helpful. Why does the NHS website say doctors do not diagnose people with Aspergers anymore? 

    Well, I went to the appointment to get my results, but they would not let me read the report until after I had left the appointment.They asked if I had any questions but I had very little to base my questions on without having read the report! I'm actually pretty irritated by the way I was treated. I was upset about my diagnosis - which I mean.. I'm entitled to an emotional reaction right? But the assessor was visibly annoyed that I was upset and seemed to take it as a personal criticism. She kept telling me that most people want a diagnosis and why did I go there if I didn't want a diagnosis. Tbh I wonder if she was autistic herself or maybe somebody in her family was and she felt that I was being negative about autistic people, which I really didn't mean to do but it's been an emotionally tumultuous time for me and I was only being honest about my feelings. 

  • You can still be diagnosed with Aspergers. It depends where you live and what diagnostic manual your local diagnostic service chooses to use (there are two main ones, the ICD-10 still uses Aspergers-the next version, the ICD-11 won't but it's not in use yet-whilst the DSM5 uses ASD). So whilst there's a move towards it being all ASD, some places do still diagnose Aspergers.

    It is a bit odd though? The evidence doesn't seem to add up to the conclusion. Will you have a follow up and an opportunity to speak again with someone to talk about the report? If not, maybe you can contact them to get some clarification?