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Skeptical about my diagnosis

LonelyColour

I have recently had my autism diagnosis and I am very skeptical about it.

The ADOS-2 report says that I struggle to engage in a flowing interchange, that my use of descriptive gestures was limited, and that due to the nature of the virtual assessment it was not possible to assess the quality of my eye contact (among many other things, of course).

My question is, if the interview was made online, how can they assess on my descriptive gestures, if they cannot see what I'm doing with my hands? I actually think that I use my hands a lot when talking. Can they base a diagnosis on only a few hours of observing me through a zoom call?

I also think that the reason why conversation wasn't flowing is because I did not know that person, and we were there for an autism assessment, not for a chit-chat. Does it mean that if you're shy and not too comfortable talking to strangers you are automatically autistic?

And obviously they could not report on my eye contact through a screen, and I think if they had seen me in person, they would have seen that I don't have problems with eye contact (or so I believe).

Obviously I must trust the experts and if they have given me a diagnosis is because I must be autistic.

On the other hand, it didn't feel like the assessment was very thorough?

Am I just on denial?

They say that denial is the first stage of grief. Is this what is happening to me?

I am having very mixed feelings about it and it's annoying because I wanted the diagnosis to take me out of this constant state of wondering if I am autistic or not. Now that I have been told that I am, I am still unsure about it.

Part of me has that "everybody has autism or ADHD now adays" attitude and I think deep down I was hoping for a negative diagnosis so that I could carry on with my life with the certainty that I was neurotypical.

Now I have to change my perspective on everything.

  • in reply to Pixiefox

    Because some people in my life had been suggesting that I might be autistic, and because I had a C-PTSD diagnosis and have always struggled with depression and anxiety. I wanted to know if I was autistic or not because that would mean that the way I treat my anxiety would have to be different.

    I think part of me was hoping that I wouldn't be, because autism has no "cure", and this upsets me.

    Today I have seen some videos about autism and "split monotropism" and I feel so seen.

    Like yourself, I don't think "I seem autistic enough", (is only people close to me who are educated on the subject who pointed it out), so I won't be telling anyone.

    Thank you for your response and for making me feel welcome x

  • in reply to Bunny

    Thank you so much for your response!

    You have nailed it. Thank you for helping me giving it a name and for the resources. I have read one of the stories about imposter syndrome and I can relate to it so well, and the person who wrote the article is also an artist, like myself! This has made me feel so much better. Thank you

  • I'm just wondering, why did you go through with an autism diagnosis if you don't think you're autistic?

    I do think I'm autistic, and didn't go through a professional diagnosis, because I don't think I "seem autistic" or struggle enough in life to be classed as autistic, but after extensive research and comparison with diagnosed autistic adults, I'm sure I am.

    What I'm saying is, don't worry about what other people think or say - do what's right for you. If you don't want a label, don't tell anyone. You don't have to change your perspective, because you're still the same person you've always been.

    You'll always be welcome on here, and you can ask the community anything you want.

  • Congratulations on your autism diagnosis and welcome to the community!

    The doubt that you describe is a very common feeling following diagnosis, and is commonly known as "imposter syndrome".

    During the period following a diagnosis it can also be common for us - especially as late-diagnosed adults - to experience emotional dysregulation. So please don't worry, this is normal! This can include working through a phase where we experience (backward-focused) anger, frustration, grieving and more.

    The NAS has a great set of articles focused around diagnosis, including one covering how you might feel during the subsequent days / weeks / months - you might find them of interest and/or helpful:

    NAS - How you might feel after a diagnosis

    NAS - Other advice covering post-diagnosis

    In terms of what to do next, my advice at this point (ie so soon after your diagnosis) would be to try and give yourself some time and breathing space to process and absorb everything that you've been through, and let your feelings settle down.

    For me, as for many others here, my diagnosis turned out to be much more of the start of a new journey, rather than a conclusion complete with ready-made solutions for my various ASD-related difficulties.

    Therapy is often also recommended after a diagnosis. You might find it helpful to borrow or buy this book. It features discussion of various types of therapy and counselling, together with advice on choosing the right therapist or counsellor - all from an autistic person's viewpoint. Several of us here have found it very helpful, myself included:

    The Autistic Survival Guide to Therapy

  • Ask yourself two questions and try to answer them as dispassionately as possible.

    1) Does an autism diagnosis accurately describe me and my problems and limitations in life?

    2) Does an autism diagnosis help me understand myself and/or help me in a material way (such as accommodations at work)?

    If you answer no to both or either of these questions you are quite free to ignore your diagnosis.

    Getting an adult assessment requires a good deal of effort and is usually at the end of a period of introspection and pondering about oneself. I suspect that you would not have gone to such effort if you did not think that you probably fitted a manifestation of autism in a substantial way.

  • in reply to LonelyColour

    So they will presumably have been required to do the assessment to NHS standards.

    There are quite a lot of videos on YouTube about the stages people to through after diagnosis and denial is one of them.

  • in reply to A

    It was NHS right to choose with Clinical Partners 

  • My assessment was a number of face to face sessions but I too still felt sceptical for a while after the result. It took time to fully realise and recognise how I behave on a day to day basis and see that it’s bleedin’ obvious the diagnosis was correct.

    As you say, they are professionals and you have to trust them.

    Was it NHS or private?