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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. 

Parents

  • 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.

Reply

  • 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.

Children
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