Post Diagnosis Blues

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6 Responses

  1. Astrid says:

    Wow, I’m so sorry you were excluded from the (Asperger’s) autistic community so many times. I happen to originally have been diagnosed with Asperger’s (I’m now diagnosed ASD under DSM-5) but I hate the exclusionist attitude of some Aspies. Wrong Planet has always had this feel to it, but it sucks that so many newer communities do too. I didn’t have a speech delay but I don’t fit many Aspie stereotypes anyway and they’re still commonly believed.

  2. Liz says:

    I am sorry to read of your experiences. Anyway I thought the whole Asperger’s diagnosis was on the way out now. It is very sad that a group different from neurotypicals should seek to exclude others. I haven’t got a diagnosis of yet but would be relieved and proud to be diagnosed with autism.

  3. Robyn says:

    I suppose sometimes there is too much emphasis placed on a specific narrow definition in a diagnosis. Diagnosis is helpful, but meeting the changing needs of an individual is really what matters.
    Perhaps look for a hobby-type group instead of a diagnosis-type group…and have some fun!

  4. Hi Astrid,
    Thank you for your comment. It’s nice to know that someone feels the way I do about the exclusionism found in parts the Aspie community. The ironic thing is that I happen to fit the Aspie stereotype perfectly, but I’m still not welcome in a lot of places, purely because my specific diagnosis is ‘Autism’.

  5. Hi Liz,

    You are right in saying that the Asperger’s diagnosis is ‘on it’s way out’, but it’s taking a very long time to go away. There are many clinicians (in the UK and other countries) still using the ICD-10, in which it is still possible to be diagnosed with Asperger’s. As far as I know, Asperger’s will be removed as a separate diagnosis in the ICD-11 when it eventually comes out, but no-one seems to know exactly when that will be.

    The thing to remember is that Asperger’s/Aspie is more than a formal diagnosis, it is also an identity, so even when clinicians have long ceased to formally diagnose people with Asperger’s, there will still be people proudly describing themselves as Aspies. If my circumstances had been different, I would probably been one of them. Perhaps I should look upon my ‘Autism’ diagnosis as a gift which enables me to see things from a different perspective.

    I appreciate what you’re saying, in that things will gradually start to change. Even the British Women with Asperger’s Facebook group that I was talking about had discussed changing their terminology to reflect the diagnostic changes in the DSM-V, although I think that the general consensus was that it should be changed to “Asperger’s and ASD”, which still excludes me (ASD being a specific diagnosis used in the DSM-V).

    I understand you when you say that you would be relieved and proud to be diagnosed with Autism. I feel the same and as far as I’m concerned, the fact that I was diagnosed with ‘Autism’ and not ‘Aspergers’ is just a minor technicality. However, there are some people in the autistic community who do not see it that way. I hope that you end up being diagnosed with Asperger’s (or, even better, diagnosed with ASD using the DSM-V), as I wouldn’t want you to have go through some of the the same things that I have. If you had any kind of speech delay, I would seriously advise you not to mention it.

  6. Hi Robyn,
    It is true that the needs and characteristics of an individual person should be more important than a specific diagnosis. I’m not normally the kind of person who ‘joins things’, so any kind of hobby group is out I’m afraid. Since my diagnosis, I’ve felt an overwhelming desire to connect with other autistic people, so I have been prepared to overlook my taboo about ‘joining things’ because my desire to connect with the autistic community is so strong. I grew up thinking that I was the only person like me in the world and since I found out that there are more of me, I want to make up for lost time.

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