Autism Disclosure at Work (survey starting soon)

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I am a sociology graduate student doing a research project called Autism Disclosure at Work. I am conducting a survey with multiple choice and short answer questions asking for your experiences about whether or not people on the autism spectrum disclose at work, and what circumstances might be involved. I am a critical autism scholar, which means I take an advocacy and acceptance stance on autism, which I see as a socially constructed issue, with no inherent values (autism is neither good nor bad). I am neurotypical. About half of my family, friends, and mentors are on the autism spectrum.

I am expecting the survey to be open in a few weeks. It will be online, but if you wish, you can do the survey via telephone, Skype, postal mail, or in-person (if you are near Southern Virginia in the US). Before you begin the survey, there will be an informed consent document that will summarize my work. If you would like more information than the summary provides, you can email me for the full Introduction and Literature Review for my Master's Thesis.

After the completion of my thesis, I will be seeking to publish the findings of this research in academic, peer-reviewed journals and may continue the work in a doctoral dissertation.

I have a running list of people who have agreed to take part in this survey. If you would like to be added to this list, please send me a private message or comment on this thread. Your identity will be anonymous no matter how much or how little information you provide. I can use all the help I can get! Please help if you can! Thank you for reading!

sure, i'll help you

I'm bumping my own topic because I'm expecting to start in about a week and a half.

This is an anonymous survey, and my purpose is to gather the experiences of autistic people who have either disclosed their autism status at work or in a volunteer position or decided not to. I want to explore the factors behind this decision and its importance. My secondary purpose is to show that people on the autism spectrum are present and authoritative in the workforce.

I will be seeking to publish these results in an academic journal.

I don't believe in disclosing unless it benefits me in some way.

Having autism is not a terminal disease, nor does it necessarily run counter to the potential for productive work.

I don't feel guilty about NOT disclosing it.

I'll participate. Just curious, what do you mean by "present and authoritative" in the workforce?


I concur.

I might participate, but I'm not sure if there's an option for people like me. I was diagnosed a long time ago and I do have some traits, but I don't really consider myself autistic. That's one big reason I don't disclose in a lot of situations. People actually understand me better when I don't disclose.

Kraftiekortie- Your perspective is exactly the kind of thing I'm looking to document. Official policies and all the casual articles we see out there (like on the Huffington Post) use academic literature as a knowledge base. In academic literature, there are very few investigations about autistic adults in the workforce. What's there is structured in a defeatist way-assuming that all autistic people disclose, need help, and receive accommodations. When you carefully examine the data, it mostly comes from autism employment services. I don't think a lot of people use those, and I suspect younger people use them more. I'm trying to build an argument that there are lots of autistic people working, but they may not have told anyone that they are autistic. I have secondary arguments that "accommodations" may not be official, and be based more on alliances and helping behaviors between co-workers. So my first step is to directly ask autistic people IF they have disclosed, and why or why not. My later work can build on that.

Rocket123-So like I said above, there isn't a lot out there for academic literature about working autistic adults. The closest to what I'm doing is a couple of studies by Karen Hurlbutt and Lynn Chalmers in 2002 and 2004. The first is about autistic adults talking about their life experiences and the second is specifically about work (I can email these to anyone who wants them). They have direct quotes from people talking about their lives, which is what I like about it. One person talked about the strain from "constantly running an 'NT emulator' when at work, which is exhausting." What I didn't like about it was that it mostly focuses on negativity. It's good to point out problems so that we can work on correcting them, but I would also like to highlight positive narratives. It's hard for young people to look to the future and not have encouraging pictures of what it's like to be an autistic adult. The few positive stories are superstar stories, like Temple Grandin. What about if you're a regular person? I want to hear stories from autistic authorities. The high level boss, the Starbucks barista, the unpaid volunteer and the computer programmer. Regular people.

It is also important to take some of the power away from the non-autistic authority by letting autistic people who do not feel oppressed talk about it. If you feel that neurotypicals are on the level of a housecat, or that they are not capable of bullying you, that's something I would want to hear about. It's still wrong for neurotypicals to mistreat autistics, but we need archetypes of powerful autistics who are not gentle mystics.

DevilKisses-Sorry for this long post. Thank you for bringing up this excellent point. I would have people who "identify or have been identified" as autistic for this study, but in order to refer to people as "autistic" I have to have some kind of diagnosis. I am currently awaiting IRB approval from my university, Virginia Tech. There is a question on there where you can choose if you have been diagnosed by a medical professional, educational professional, a couple other choices, or a self-administered test. I hope they let me keep this last option on. I do have to have one of those options chosen to accept people as participants. I think a lot of people do not have a diagnosis or other identifier incorporated into their identity. I, myself, am physically disabled. I mention this in my academic writing because I have to, but it is not part of my personal identity. I am a woman and that IS part of my personal identity. I didn't choose either, and both have an impact on how I am treated by others. So yes, your perspective would definitely be something I would want to hear.

I was diagnosed as autistic at about age 3, around 1964; with "brain injury/damage about 1965; with Schizoid Personality Disorder at age 15, in 1976. No official diagnosis since.

No verbal speech until age 5.5.

Would that count?

As I mentioned, I would be interested in participating.

From a work perspective, I consider myself quite fortunate for two reasons:

#1 – I am in a profession that values my detailed-oriented, systematic, bottoms-up thinking style. As a note, it seems quite similar to the way Temple Grandin describes her thinking style (“All my thinking is bottom-up instead of top-down. I find lots of little details and put them together to form concepts and theories”).

#2 – I am in a profession that allows me to work mostly with other engineers (who more often than not, have similarly poor social skills)

With this combination, I can be myself (while at work) and do effective work.

The problems I have encountered at work occur when I begin to interface with people who are outside the engineering group. I suppose it’s a lot like mixing oil and water.

I have never disclosed and hope I never need to. The one accommodation that I wish I had was the ability to work more from home. My work requires lots of thinking time. I am problem solving just about all the time. For some reason, I cannot problem solve in the work environment. Also, I have difficulty doing really focused work (e.g. writing a functional design document, etc.) in a work environment. I prefer to do that, in the comfort of my home. Early in my career, I used to regularly stay (at work) late into the evening, so I could do that type of work, when no one else is around. Over time, this became quite difficult (as my wife would complain that I was never home and was a stranger to the kids). More recently, I have been arranging to work more from home or simply relegating myself to part-time work. Simply put, it's difficult for me to spend > 3 days per week in an office environment.

Yes it would. All of those diagnoses, for those time frames, are now considered "probably autism."

In order to use a person's data, I need each participant to identify as anything other than "definitely not on the spectrum" AND I need a positive diagnosis by another person or by a self-test at some point in their life. It doesn't matter if a later test says that you are neurotypical. I just need one positive test at some point. Negative tests may not be accurate, for a lot of reasons that I can explain if anyone wants me to.

If anyone says they want to participate now, this does not commit you to the study. All I'm doing now is putting usernames into a password protected list on my equally password protected laptop. This is so I can contact everyone on that list when it's time to begin the study (hopefully in mid-July). No one else involved in this study will have access to anyone's usernames. Just me.

I am supposed to get at least 40 people to participate, which will be difficult. That's why I'm trying so hard to recruit. Existing studies like this have less than two dozen people in them. I would like to break that trend.

Rocket123- Thank you! I have you on the list! I used to work in software engineering as a mid-level manager. A few of our engineers were on the autism spectrum, undisclosed, and seemed to have the kind of complications you're talking about. We did a matrix organization style, which was horrible to everyone but the aspies had the worst of it. Three times more unnecessary social stuff every day and less productive work. Luckily I left before they took down the cube walls. I'm not even autistic and it drove ME crazy. It was like having bees swarming around your head and having to pretend they weren't there.

Same here, especially when someone wants their lab rats test subjects to participate without being paid.

I'll respond.

I've been diagnosed with everything, just about, however.

Fnord, Virginia Tech doesn't give me any funding. I didn't apply for the autism research grants because they are attached to cure-based efforts. My purpose with this study is to publish the disclosure experiences (or factors behind deciding not to disclose) of autistic adults who are working or have worked. I am familiar with your posts and I would love to be able to add your opinions and experience to this work. You'll be able to read the introduction and literature review before you commit to the study, and even then if you change your mind I can easily pull your data.

I want to reiterate that I am HIGHLY interested in the opinions and experiences of people who have never disclosed or have disclosed in the past and decided not to do it again or any other disclosure or nondisclosure experience. My purpose is to show that not all people do, and to show what happens when disclosure happens.

Archetye- Thank you! I added you to the list!

I'm all for further research. Feel free to add me to the list.
I home test as having Aspergers, the local charity concurred. My GP said I tested negative but their track record across the board is poor at best. As a 16-year-old with porcelain skin they questioned whether I was sure I wasn't a 32 year old Indian as "that's what the computer said". You can imagine how much that put me at ease for surgery lol.
It's pretty clear to me I have it but have been fortunate to have good mentors within my family which see me pass as an eccentric NT.

Thank you! I have you added to the list!

was i added?