Autism Disclosure at Work (survey starting soon)

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Yes! Thank you! I'm hoping we get to start in about a week! All I'm waiting for is approval from my university's IRB. If anyone wants to take it but has not had a formal diagnosis or a self-test, I recommend The Aspie Quiz, or the AQ Test or the RAADS-R.

I prefer the RAADS-R, then the Aspie Quiz, and I only like the AQ because it is quick. I do not trust the AQ to give accurate negative results, and I think if one analyzed the questions too much the results could also be inaccurate. The reason why I like the RAADS-R so much is because the answer options are "true now, true now and when I was younger, true only when I was younger than 16, and never true." I love that, because maybe you used to spin or flap when you were a kid but you don't now. I wish it gave more age options, but I'm pleased it has that anyway.

SocOfAutism – It’s fascinating that you are planning to do a survey about “Autism Disclosure at Work” and include people who self-diagnose.

Why do I say that? Well, based upon my experience (in corporate America), the work world is not a safe place and this could very well lead to disastrous results.

Please note, I have nothing against people who self-diagnose. But, I do believe it would be dangerous for them to disclose this in a work setting.

Then again, maybe I am wrong. There could be positive stories about this (which would be interesting to read about).

Ah! This is in my literature review! Which will be available for participants who want to read it. For those who don't, there is a brief summary in the informed consent document.

In the US, the ADA only protects disclosures that are medical and in the form of a written document. If you verbally tell your boss that you are autistic and a formal document is being provided to HR, ONLY information in that document is protected. So in this example, legally your boss can tell all your co-workers that you are autistic, (s)he can provide her/is own interpretation of what autism is, and they in turn can talk about it amongst themselves or even greet you at the door with a HAPPY AUTISM COMING OUT banner. I know this sounds unbelievable, but it's true. It's true for any disability.

The reason for the diagnosis question is because two years ago I tried to do a different study and the IRB required me to make sure my participant had a medical diagnosis of autism before I could refer to him as "autistic." It's possible that they will do that again and not allow the "self-diagnosis" option, but I'm crossing my fingers that it will get through.

Update: My IRB application was reviewed yesterday. There are some minor errors that I have to correct and I have to justify why I am providing participants with a short summary of what I'm doing before they go to the survey link. The reason for this is because autistic people are a minority population who have been oppressed and are often recruited for research that later represents them in negative ways. My research is about listening to autistic people express themselves. I think it's important for people to know what kind of research they are participating in before they begin.

They usually have a few things that they want changed before it's approved. Hopefully I will have this ironed out shortly.

I really dislike when people discount self diagnosis. Self diagnosis is the first step in all of this. I'm in my twenties. I was born in the time where autism wasn't entirely yet established as a diagnosis for kids. The hilarity of it is that I had all the classic symptoms of autism in a child, and yet for some reason no one caught it. Now I am stuck in this odd bubble in 2015, where everyone wants to focus on the new generation of kids on the spectrum and have forgotten us twenty somethings, going hi.

I have direct link between work performance and being on the spectrum. And I have been through the assessment, self diagnosis was the first step in being able to get myself some help, somewhere willing to help. And I don't think it should be discounted.

I don't have work right now to tell. But after working eight different jobs in the last two years and being unemployed for a year now, for me there is a direct link between the inability to function in the social dynamics of work and being able to process everything at work as well.

I am seeking professional help as well and not completely relying on self diagnosis, simply I feel like it should be recognized at least as a valid step.

I don't know if this is what Rocket123 was trying to say, but whether one has a self-diagnosis or even a medical one, it is indeed "dangerous" to disclose in a work environment unless you are giving a doctor's note to human resources and/or your boss. Because, at least in the US, that circumstance is the only way you are legally protected under the ADA.

It doesn't matter if you are currently working or not. It doesn't even matter if your current or past job is a paid job. I have a participant on my waiting list who has never had a traditional "job" or volunteer job, but he is a blogger who receives money for the number of visitors that he gets on his page. He doesn't get enough to make a living wage, but that doesn't matter. An unpaid internship also counts.

What I'm looking for is people who have had situations where you have regular tasks, an authority over you, and either peers or co-workers.

It's dangerous to disclose because people who don't like autistic people at their workplace could do things "behind the scenes" to get you fired.

There are many ways to "get around" discrimination. In the United States, unless there's a union contract, one could get fired for just about anything. This is known as the "at will doctrine."

Yes, but here's a problem. If the community itself, the autistic community itself, disregards the importance of self diagnosis, oddly it is reflected on the other community as well. So, what should I do, sit on my hands and ass and wait for my assessment to come through, when I clearly have issue with a working environment and not a single piece of paper that gives me that credit. I live out of a bedroom of my coworker, I don't pay rent. I am on foodstamps, I have zero lick of money right now, I need new shoes bad, I have four pairs of regular clothes, and technically only one pair of good pants. My jacket is tattered, I have nothing, but sweaters.

Sure, I know it's dangerous thing to disclose. But what do you suggest I do?

I did not discount anyone who self-diagnosed.


I did not personally self-diagnose as the first step. Certainly, I suspected Asperger's. Then again, I suspected a whole bunch of things.

Anyway, the point I was trying to make is as follows:

1. It seems risky enough to disclose autism at work, if you are professionally diagnosed
2. It seems an order of magnitude more dangerous to disclose autism at work, if you are self-diagnosed

Then again, I could be wrong. I guess we’ll have to wait to read the results from the study.

In "real life," in America, especially in "low-paying" professions, it's pretty dangerous to disclose you have ANY kind of disability should it not be visibly apparent. Walmart, for example, believes everyone is expendable. Anyone desiring "accommodations" at Walmart are considered even more "expendable" than most employees.

I would be happy to join in, but I am no longer employed (since 2001). And, I had no idea of autism or ASD when I did work. But, I look forward to the results. Very interesting topic.

I'd like to participate, if possible.

You do not have to be currently employed to participate. Any current or past job would count, even if it was an internship or a volunteer job.

If it's okay, I'll go ahead and add you, AspieUtah and you Caelum, to my list? This just means I can get right back with you and give you the study link as soon as my university has given me the okay to begin.

Sounds good.

Cool! Sign me up.

The study is open!

https://autatwork.wordpress.com/

Hover your mouse pointer over the bolded words for links.

Thank you for everyone who has helped so far and to everyone who will help! I can continue to answer questions here, you can directly message me, or you can contact me via the information listed on the wordpress.