Self Dxers Who Don't Want a Diagnosis; Why Not?

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SharonB
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12 Feb 2020, 5:34 pm

I have a high-paying job, husband and children: I have ASD. If I was able to validate myself, I would have. But I am not, so I chose to get diagnosed because my internal experience is complete chaos and I have a stress threshold (high, but critical) that I reach where my BAP appearance is out the window and Autism is IN. I am sick of folks telling me I am "fine". I was DX'd with "mild to moderate" ASD. Plus I am VERY nervous around police and medical situations b/c I have had traumatic events related to my outstanding outward appearance giving way to misunderstandings (to say the least). Just as someone with severe ASD might be misjudged in areas where they are moderate to mild, so too are those with mild ASD misjudged in areas where they are moderate to severe.



B19
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12 Feb 2020, 5:36 pm

Diagnosis is a choice. We are adults here and adults have the agency of choice. No-one has to justify that choice. I am sick and tired of these threads and hope this is the last of them.

Pushing diagnosis as yet another "should" is not a way forward in terms of empowering AS people. I am tired of it.



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12 Feb 2020, 6:40 pm

It is the "I had to do it, so you need to do it too," mentality.

I know from experience that a lot of stuff I do is just weird to other people and I'm OK with that.
Which is why I don't need therapy. :D

Though I do have a lot of fun shopping for clothes I don't need, otherwise known as "retail therapy." :)



firemonkey
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12 Feb 2020, 7:21 pm

For me being assessed was about confirming what I'd thought for many years. That being that there was more going on than just mental illness . In practical terms it wasn't going to make a major difference . If it had been done in 1992, when I was 35 , and help tailored to the combination of Asperger's and severe mental illness , it could have made some difference .

I think a lot of people in my situation would have decided not to be assessed . If you are doing well , despite having a strong belief you are on the spectrum , then the decision not to be tested is understandable .


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Apuleius
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12 Feb 2020, 9:54 pm

I'm the bread winner in a family of five. My son is non-verbal autistic and 4 years old. Diagnosis made resources available to him, resources that he needs and which have helped him make leaps and bounds. Diagnosis does nothing concrete for me. It doesn't give me access to any professional help that I can't get without one. All a diagnosis would do for me is close off job opportunities. And to get it I would need to spend money, time and aggravation. I have nothing to gain, quite a bit to lose, so why do it?

There are neuropsychs and psychiatrists in my area who are willing to assess for ASD but keep it off any paper records, and I'm considering seeking one out. But in the meantime, I can read Tony Attwood's books and judge for myself, so that's what I'm doing.



IsabellaLinton
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12 Feb 2020, 9:59 pm

Apuleius wrote:
I'm the bread winner in a family of five. My son is non-verbal autistic and 4 years old. Diagnosis made resources available to him, resources that he needs and which have helped him make leaps and bounds. Diagnosis does nothing concrete for me. It doesn't give me access to any professional help that I can't get without one. All a diagnosis would do for me is close off job opportunities. And to get it I would need to spend money, time and aggravation. I have nothing to gain, quite a bit to lose, so why do it?

There are neuropsychs and psychiatrists in my area who are willing to assess for ASD but keep it off any paper records, and I'm considering seeking one out. But in the meantime, I can read Tony Attwood's books and judge for myself, so that's what I'm doing.


Thanks for posting and welcome to WP.

I'm just curious when members say that an official diagnosis would limit their job opportunities unless it's kept "off paper".

How would job opportunities know? How would your information be "on paper" or accessible to others if you didn't wish to share? Maybe this is a US thing? With my report I got to chose who has access.

Good luck with whatever you decide to do. I'm glad your son is doing well, also.



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13 Feb 2020, 1:31 am

SharonB wrote:
Just as someone with severe ASD might be misjudged in areas where they are moderate to mild, so too are those with mild ASD misjudged in areas where they are moderate to severe.

I like this Sharon, well said.



Amity
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13 Feb 2020, 2:00 am

B19 wrote:
Diagnosis is a choice. We are adults here and adults have the agency of choice. No-one has to justify that choice. I am sick and tired of these threads and hope this is the last of them.

Pushing diagnosis as yet another "should" is not a way forward in terms of empowering AS people. I am tired of it.

I too am tired of seeing the type of threads where members here feel that they have to justify this decision. It's that easy dehumanization that the anonymity of the internet lends itself to so well.

It seems like a natural reaction to give personal details about deeply individual reasons, I wonder why people (myself included) feel compelled in this way, an appeal for empathy and acceptance perhaps... Not an out of context request on an ASD support site.

Perhaps it's an opportunity to build up that kind of acceptance in those with these specific empathy challenges, but again it's not ethical to do this at the cost of peers. These are human stories from our online community.
It also strikes me as a method of destabilising what is to me like an ecosystem, though perhaps I'm being too cynical now.

I am beginning to wonder though if it is reflective of a culture of "the haves and the have nots", the delusion of meritocracy.
Either way, I'm not standing for it, this site has international membership, with what appears to be huge gaps in the provision of services for adults globally.



Fern
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13 Feb 2020, 2:23 am

IsabellaLinton wrote:
I'm just curious when members say that an official diagnosis would limit their job opportunities unless it's kept "off paper".

How would job opportunities know? How would your information be "on paper" or accessible to others if you didn't wish to share? Maybe this is a US thing? With my report I got to chose who has access.


There's two ways it can limit opportunities: explicit and implicit.

Explicit examples:

1) When I was applying for a student visa to a university in Japan, I was told that they would not accept students to the program with any diagnosed mental health conditions, since they believed the stress of full immersion in a foreign culture and language would be so intense to accommodate students with these types of special needs. I had to sign a an official document saying that to my knowledge I did not have depression, OCD, ASD, bipolor, or schizophrenia.

2) In the USA, when applying for a job teaching kids, I had to sign a similar document that stated that I did not have several listed mental health conditions (including autism). This was in the same paperwork as where I had to promise I didn't have a criminal record.

Could I have lied? Yes. However, at the risk of perjury, since in one of the cases it was a notarized form that went through an international embassy.

Then there is also implicit bias. I disclosed in a previous workplace that I was on the spectrum and guess who was the one employee that never got offered a promotion. Me. Guess who was not allowed to work the register like everyone else. Also me. It can change people's opinion of your "potential" even sometimes without them realizing it.


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firemonkey
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13 Feb 2020, 4:01 am

I can see why , given global lack lack of help and support after the age of 18, many here choose not to get assessed . It's far from being an irrational decision .


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You are very likely neurodiverse (Aspie)


BTDT
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13 Feb 2020, 9:44 am

I know someone who is on disability due to mental health issues, so I asked her about services after 18. They went away when she turned 18.



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13 Feb 2020, 10:28 am

One thing I will add since it is relevant to the thread if I am able to start of own business as a person with Autism and wanted to hire people with disabilities, I would not be able to do it without having a diagnosis myself, especially if it became public knowledge and I was accused of faking to commit fraud. There is also a recent provincial program that pays half of a new graduate with disabilities salary: I can imagine if I was diagnosed I would have been able to take advantage of this to land a career in the financial/business sector, not that I would want it in hindsight.

I still think overall that the self-dxers are bang on and there is overall little benefit if I don't go down the entrepreneurship path. It would have been far better if the insurance company gave me $2000 in cash to get my business off the ground as it would have done far more for my mental health!



IsabellaLinton
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13 Feb 2020, 10:30 am

Fern wrote:
IsabellaLinton wrote:
I'm just curious when members say that an official diagnosis would limit their job opportunities unless it's kept "off paper".

How would job opportunities know? How would your information be "on paper" or accessible to others if you didn't wish to share? Maybe this is a US thing? With my report I got to chose who has access.


There's two ways it can limit opportunities: explicit and implicit.

Explicit examples:

1) When I was applying for a student visa to a university in Japan, I was told that they would not accept students to the program with any diagnosed mental health conditions, since they believed the stress of full immersion in a foreign culture and language would be so intense to accommodate students with these types of special needs. I had to sign a an official document saying that to my knowledge I did not have depression, OCD, ASD, bipolor, or schizophrenia.

2) In the USA, when applying for a job teaching kids, I had to sign a similar document that stated that I did not have several listed mental health conditions (including autism). This was in the same paperwork as where I had to promise I didn't have a criminal record.

Could I have lied? Yes. However, at the risk of perjury, since in one of the cases it was a notarized form that went through an international embassy.

Then there is also implicit bias. I disclosed in a previous workplace that I was on the spectrum and guess who was the one employee that never got offered a promotion. Me. Guess who was not allowed to work the register like everyone else. Also me. It can change people's opinion of your "potential" even sometimes without them realizing it.


Wow! Thanks for that information. I had NOOOOO idea. That sounds horrible. Autistic people can't teach children? I'd love to know why, or know if anyone has taken that to court as a human rights violation.

Just, wow.

I'm so sorry to hear this is true for people. Are you American? Is this an American thing or more widespread?

My assessment was long after I left my career so I never had to deal with that in the workplace.



Fern
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13 Feb 2020, 11:21 am

IsabellaLinton wrote:
Fern wrote:
IsabellaLinton wrote:
I'm just curious when members say that an official diagnosis would limit their job opportunities unless it's kept "off paper".

How would job opportunities know? How would your information be "on paper" or accessible to others if you didn't wish to share? Maybe this is a US thing? With my report I got to chose who has access.


There's two ways it can limit opportunities: explicit and implicit.

Explicit examples:

1) When I was applying for a student visa to a university in Japan, I was told that they would not accept students to the program with any diagnosed mental health conditions, since they believed the stress of full immersion in a foreign culture and language would be so intense to accommodate students with these types of special needs. I had to sign a an official document saying that to my knowledge I did not have depression, OCD, ASD, bipolor, or schizophrenia.

2) In the USA, when applying for a job teaching kids, I had to sign a similar document that stated that I did not have several listed mental health conditions (including autism). This was in the same paperwork as where I had to promise I didn't have a criminal record.

Could I have lied? Yes. However, at the risk of perjury, since in one of the cases it was a notarized form that went through an international embassy.

Then there is also implicit bias. I disclosed in a previous workplace that I was on the spectrum and guess who was the one employee that never got offered a promotion. Me. Guess who was not allowed to work the register like everyone else. Also me. It can change people's opinion of your "potential" even sometimes without them realizing it.


Wow! Thanks for that information. I had NOOOOO idea. That sounds horrible. Autistic people can't teach children? I'd love to know why, or know if anyone has taken that to court as a human rights violation.

Just, wow.

I'm so sorry to hear this is true for people. Are you American? Is this an American thing or more widespread?

My assessment was long after I left my career so I never had to deal with that in the workplace.


I am an American, but I don't think bias of this type only exists here. In one of those examples I gave, the paperwork I had to sign actually came from the Japanese side of my exchange program, not the US. As for childcare in the US, I think it's a case-by-case thing. There are anti-discrimination laws in the United States that were meant to protect people with disabilities. However, when it comes to child care, especially for private institutions and charter schools, they do not necessarily have to accommodate everyone who applies for a job. Heck! Charter schools are allowed to turn down students with disabilities if the school argues that they "don't have the resources to accommodate them". That's part of what is messed up about the charter school system. The idea in previous conception is that students with special needs could go to a public school which has special-ed classes. As a lot of public schools turn charter though all of that rapidly becoming an impossibility. So there can even be cost to having a diagnosis as a child in these circumstances, which has me far more upset than I am about my own career, since early intervention in a lot of kids on the spectrum is really important.

...but I digress.


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13 Feb 2020, 9:58 pm

I'm sorry to those who found my question accusatory or divisive, that wasn't my intention. I was just curious about what could lead people with significant challenges to determine that managing those challenges alone was preferable to doing so with support. I just know that I can't survive on my own without the supports my diagnosis has yielded, but I forget that this isn't true for everyone.


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