Take a moment and fill this poll? Thanks!

  • Deestan@lemmy.world
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    1 year ago

    Serious question: Why?

    Gathering data like this for “curiosity” is understandable, but too vague for medical and personal data.

    Without a stated purpose, data can be presented to form any and all kinds of narratives.

    Will it be used to form a tabloid piece about “overwhelming majority of people in autism community aren’t actually autistic” fuelling some agenda against the “self-identifying victim mentality epidemic”? Because it can, whether it is the intention or not, and I want less of that.

    Or is it used to form an opinion on whether a clinical self-diagnosis is important to people? Or difficult to get? If so, please word the questions differently.

    • Moegle@feddit.uk
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      1 year ago

      Honestly I’d be very surprised to see an online autism community with a majority of people professionally diagnosed, even more surprised if the majority were diagnosed as children. Even setting aside how underdiagnosed large sections of the autistic population are, the people who need to seek support and validation that they belong to a community are much more likely to be those who didn’t have the right language or support as a child.

    • Ænðr@lemmy.world
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      1 year ago

      Looks like autistic people like to make and keep lists of things whether useful or not.

  • Lhianna@feddit.de
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    1 year ago

    Okay, so I am kinda self diagnosed.

    For once, when I was a child Asperger’s wasn’t even acknowledged yet and there was still the “girls don’t have autism” trope going on. Also, my parents were both addicts and abusive. How things looked on the outside was very important to them though so acting and moving “normally” was literally beaten into me and I learned to mask pretty well at an early age. School was still hell though and I never managed to make any friends.

    Fast forward to the time of the internet and I started meeting people who weren’t that different from me. I started to make friends and met my husband.

    Even more years later all that trauma from my childhood reared its head and I went through lots of therapy. At some point my therapist suggested getting tested for ADHD and autism. I had to go private because it was pretty much impossible to get diagnosed as an adult otherwise and after three years of waiting I was finally tested for ADHD and diagnosed. The neurologist who diagnosed me suggested getting tested for autism as well and let me take the RAADS-R test and I scored a whopping 212 points. She was, however, not qualified to give me an official diagnosis.

    Right now, I’d have to wait for three to six years until getting assessed and it wouldn’t change anything for me. I don’t need accommodations at work because I’m a stay at home wife and there are no other upsides to an official stamp. I simply use workbooks and other information to find ways to make life easier for me.

  • MooseBoys@lemmy.world
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    1 year ago

    The fact that there’s no “No - I don’t identify as autistic” means you’re going to get a lot of extra noise in the “Unsure” bucket, plus a lot of people who just see “No” and check that.

  • HardlightCereal@lemmy.world
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    1 year ago

    Professionally diagnosed, but I’m not voting in the poll because I don’t want anyone to know how many people here are self diagnosed.

  • RavenFellBlade@lemmy.world
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    1 year ago

    At the time I took this, 40% voted self-diagnosed, 22% adult-diagnosed, 18% child-diagnosed, 18% undiagnosed.

    I voted self.

  • UnendingQuest@lemmy.world
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    1 year ago

    Not allowed to vote because I use a VPN, but am self-diagnosed and waiting for an assessment (scheduled for next Feb.)

    • RavenFellBlade@lemmy.world
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      1 year ago

      Same. My GP concurs with my assessment, but is also very clear that they aren’t qualified to make such a diagnosis in any official capacity.

      • Lhianna@feddit.de
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        1 year ago

        My neurologist says she suspects it very strongly and the test she administered was conclusive as well but she’s not qualified to make an official diagnosis and waiting times for adult women are between 3 and 6 years in my city (and that’s going the private route).

  • sature@discuss.tchncs.de
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    1 year ago

    Will you list the results after a while? I want to see them, but don’t want to have to create an account on that site.

        • Lhianna@feddit.de
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          1 year ago

          Because in some places it can take a very long time to find the resources to get diagnosed. Why do you think people should wait to look for ways to help themselves until they got an official stamp?

          • Mojave@lemmy.world
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            1 year ago

            Help yourself without claiming your fake ass medical diagnosis to other people publicly

              • Lhianna@feddit.de
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                1 year ago

                I’d agree in part. In my opinion self diagnosis doesn’t mean you get to demand accommodations or special treatment. Self diagnosis for me means that I have the terminology to look for things to change in my life to make things easier, for exercises to help myself and to accept that I might not be able to do everything other people can do. It allows me to stop telling myself that I’m lazy, stupid, retarded etc. It does not mean that I walk around demanding “attention”.