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.
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.
Thank you for asking this. If I am being completely honest, I asked this to get a sense of whether I am “valid” because I am self identified too. The internalized imposter syndrome is strong with me. The toxic effect of this is that I project my own insecurity onto other self identified people sometimes and feel like I need to know the composition of the space to decide how “authentic” the expression of autism is there. I am fully aware it is an extremely harmful view to have, but I unfortunately do have it.
Hey, thanks for answering my well-meant but somewhat blunt question :)
I feel the same as you. I have self-diagnosed after years of research and even gone to multiple seminars on autism due to diagnosed family members, and I still worry that it’s not valid enough.
Not for lack of trying to get a professional diagnosis, I’m on my 3rd attempt now, but they generally ignore masking adults in my country. While the world in general is on DSM-5, we’re still on ICD10 (from 1992!!), so professional competence on adult and masked ASD is scarce.
In short: Self-diagnosis is 100% valid. It has to be, because not everyone are able to get one affordably or even at all (or may not want one because it locks them out of certain professions), but they still need support and understanding.
Didn’t find it blunt at all. Very fair and important question. I am a researcher in autism related field (I also have imposter syndrome about calling myself autism researcher, I prefer language researcher) and keep myself immersed in all the latest research. Yet I don’t feel like I have the knowledge required to decide and be sure I am right. It is somewhat a me thing but I recognize it is largely the unavoidable outcome of medicalizing an identity (would love to hear what others here think about autism as an identity). The individual can not be the authority.
Sorry to hear about your struggle with trying to get a diagnosis. May I ask, are you a woman?
If my own autism thought me one thing it is all intelligent consciousness is valid, no matter what species and divergenties.
I prefer a bigger open community where we can all respect each others quirks and differences away from neurotypical biases then a small exclusive group of “real autist” gatekeepers.
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.
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.
Thank you for asking this. If I am being completely honest, I asked this to get a sense of whether I am “valid” because I am self identified too. The internalized imposter syndrome is strong with me. The toxic effect of this is that I project my own insecurity onto other self identified people sometimes and feel like I need to know the composition of the space to decide how “authentic” the expression of autism is there. I am fully aware it is an extremely harmful view to have, but I unfortunately do have it.
Hey, thanks for answering my well-meant but somewhat blunt question :)
I feel the same as you. I have self-diagnosed after years of research and even gone to multiple seminars on autism due to diagnosed family members, and I still worry that it’s not valid enough.
Not for lack of trying to get a professional diagnosis, I’m on my 3rd attempt now, but they generally ignore masking adults in my country. While the world in general is on DSM-5, we’re still on ICD10 (from 1992!!), so professional competence on adult and masked ASD is scarce.
In short: Self-diagnosis is 100% valid. It has to be, because not everyone are able to get one affordably or even at all (or may not want one because it locks them out of certain professions), but they still need support and understanding.
Didn’t find it blunt at all. Very fair and important question. I am a researcher in autism related field (I also have imposter syndrome about calling myself autism researcher, I prefer language researcher) and keep myself immersed in all the latest research. Yet I don’t feel like I have the knowledge required to decide and be sure I am right. It is somewhat a me thing but I recognize it is largely the unavoidable outcome of medicalizing an identity (would love to hear what others here think about autism as an identity). The individual can not be the authority.
Sorry to hear about your struggle with trying to get a diagnosis. May I ask, are you a woman?
Interesting angle about medicalizing an identity. Never thought of it like that.
Not woman, plain ol’ cis male.
If my own autism thought me one thing it is all intelligent consciousness is valid, no matter what species and divergenties.
I prefer a bigger open community where we can all respect each others quirks and differences away from neurotypical biases then a small exclusive group of “real autist” gatekeepers.
Looks like autistic people like to make and keep lists of things whether useful or not.