Ok admittedly I have been avoiding this topic for years, because I am pretty passionate (read: an asshole) when it comes to the topic of Self-DX. However, I thought this would be something to approached, especially when I have been talking about NT privilege.
There is a an advantage to being Self-DX. It's one that is seen and talked about with in the community but only non-directly. I've seen it commented as being a "Stealth Aspie" being not on the books, or records. Passing well enough without a lot of suspicion. What this really is. Is NT Privilege.
That the advantage of being Self-DX, you have personal label but not one that strips you of your infrastructural status as an NT. The government, local, state and so forth, sees you as an "NT". You don't need, the county's DD (developmental disability) services, BVR or Disability Medicaid or SSI. According to the government you're normal.
This is a massive advantage to folks with a self-DX, they can live their lives carrying the autistic label and suffer none of the community backlash. This is why they tout being a "stealth aspie" this is why many discourage autists on getting a clinical DX. Keep the label, keep the privilege.
Now I am not arguing the the validity of self-DX (especially online), this is not the forum for it (besides that's a clusterfuck of topic). Yet I understand why self-dx is appeasing for folks. Why would you willingly strip the advantages of being "NT" to gain a diagnosis that would haunt you? One that would make getting employed impossible, getting services hard and walking around with a social ghost haunting you.
Self-dx, can have their cake and eat it too. The rest of us that are on the books, can only look at the yummy NT Privilege cake but never eat it.
Something to be aware of Self-DX....
I was self-dxed for some time before I was officially diagnosed, but I didn't find I had all of these advantages when I had my self-diagnosis, or even when I had no diagnosis at all. I mean, yes, I have noticed some people treat me differently upon learning that I am autistic. But in situations where people assumed I was NT before, they still seem to, and still seem to catch on to me being socially "off".
ReplyDeleteWhile being perceived as normal, it was actually kind of obvious to a lot of people that I was having a lot of trouble with things that most adults should be able to handle, and I did need those services, but I didn't know I needed them until it was made explicitly clear.
I think I did need to self-dx before I saw a professional. I think it was necessary for me to take it seriously. And at that, when I first realized I had it, I didn't even know there were services I could access (and I would be in much better shape if I had known then what I know now).
Then there's the matter of economic access - diagnosis can cost a lot of money, may not always be covered by insurance, and makes it difficult to get insurance (at least until it becomes illegal to deny according to pre-existing conditions).
Temple Grandin even recommends that people not get diagnosed unless they really need it because of the impact it can have.
Oh, and then there are those who can look for a diagnosis, but the professionals they see have very rigid views of what constitutes autism or AS, and they don't get any diagnosis at all.
I'm not going to argue that there aren't self-dxed Aspies who benefit from a lot of privilege and will themselves tell anyone that they have no impairments or disability, but I've come across a lot of people who have real problems and who are trying to find help for themselves while measuring whether getting that diagnosis will really help them, if they can even access it all, you know?
It's a crapshoot really. A lot of folks Self-DX as they get older because at this point of the game what is the point of getting one. I am going to shame people for self-dxing (I have some personal issues with it online) but at the same time. I never looked for a diagnosis an ASD. I never wanted to be DX with an ASD.
ReplyDeleteMaybe it's my own personal bitterness. But I see more aspies in my peer age that still have a lot of NT privilege (such as not worry about doctors finding your diagnosis and mistreating you) and some actually don't see or miss it. It's in some contexts the same way some autists have verbal-privilege. We don't notice it until it's pointed out.
Yes, all good points. I do wish many of the people I've met (some, not all self-DXed) were more aware of the privilege they do have or didn't refer to it in ways that belittle those who lack it.
ReplyDeleteThat is true. This essay is more of a caevate to autists that have certain social privileges that others my not have.
ReplyDeleteVerbal privilege is another one but that's another essay :)