Autism Disclosure at Work (survey starting soon)

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NYAspie
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21 Aug 2015, 3:48 pm

I was diagnosed with AS at an early age, but was unaware of my diagnosis until I was 14 years old. Have had steady full-time employment for ten years; have never disclosed AS diagnosis for fear of termination of employment and/or embarrassment/harassment.


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SocOfAutism
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21 Aug 2015, 4:25 pm

NYAspie wrote:
I was diagnosed with AS at an early age, but was unaware of my diagnosis until I was 14 years old. Have had steady full-time employment for ten years; have never disclosed AS diagnosis for fear of termination of employment and/or embarrassment/harassment.


Hello NYAspie! One of the things I'm studying in this project is people who do NOT disclose and the reasons why they choose not to. If you would like to participate, I would love to hear from you. Just click on the link in my signature line.



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21 Aug 2015, 8:38 pm

SocOfAutism wrote:
NYAspie wrote:
I was diagnosed with AS at an early age, but was unaware of my diagnosis until I was 14 years old. Have had steady full-time employment for ten years; have never disclosed AS diagnosis for fear of termination of employment and/or embarrassment/harassment.


Hello NYAspie! One of the things I'm studying in this project is people who do NOT disclose and the reasons why they choose not to. If you would like to participate, I would love to hear from you. Just click on the link in my signature line.


Whoops; I'll take the survey as soon as I post this.


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Meistersinger
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21 Aug 2015, 9:19 pm

TheBadguy wrote:
Rocket123 wrote:
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).


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.


You think you had it bad? I WASN'T DIAGNOSED UNTIL MY MID-50's!! !! !! !! ! I haven't been able to find work since 2011, when I lost my job at Papa John's.

The only reason I found out I was autistic is that my youngest brother and his wife saw the signs, since their son, and possibly their daughter (who officially is undiagnosed), are both low-functioning and mostly nonverbal. I took the AQ, as well as the Aspie quiz, then, since I was on general assistance and Medicaid at the time, I had a formal diagnosis done at the local behavioral health clinic (as I was also diagnosed as bipolar I and General anxiety disorder-NOS) under DSM-IV-TR. I've only disclosed to a few people (about 10) because everybody and their brother (except for about 3 people) react extremely negatively to my diagnosis. Even now, when I apply for part-time work and I tell them I'm on SSDI, forget about getting a job. Vocational Rehab in PA is a cruel joke. They don't have the foggiest idea how to handle mental health disability. (Physical disability is a different story). Even if I got an interview, and don't disclose, my age is against me. I turn 58 in 2 weeks, and I'm told "Don't call us, we'll call you", and never hear back from anyone.



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22 Aug 2015, 8:11 am

Meistersinger wrote:
I WASN'T DIAGNOSED UNTIL MY MID-50's!! ! ! ! ! ! ! ! I haven't been able to find work since 2011, when I lost my job at Papa John's.

The only reason I found out I was autistic is that my youngest brother and his wife saw the signs, since their son, and possibly their daughter (who officially is undiagnosed), are both low-functioning and mostly nonverbal. I took the AQ, as well as the Aspie quiz, then, since I was on general assistance and Medicaid at the time, I had a formal diagnosis done at the local behavioral health clinic (as I was also diagnosed as bipolar I and General anxiety disorder-NOS) under DSM-IV-TR. I've only disclosed to a few people (about 10) because everybody and their brother (except for about 3 people) react extremely negatively to my diagnosis. Even now, when I apply for part-time work and I tell them I'm on SSDI, forget about getting a job. Vocational Rehab in PA is a cruel joke. They don't have the foggiest idea how to handle mental health disability. (Physical disability is a different story). Even if I got an interview, and don't disclose, my age is against me. I turn 58 in 2 weeks, and I'm told "Don't call us, we'll call you", and never hear back from anyone.


Isn't it bizarre that people, 1) think they're entitled to an opinion about anything you're diagnosed with and 2) don't respect people in their 50s anymore? A big part of what I'm doing with my research now and going forward is trying to document the experiences of middle aged people and even elderly people on the autism spectrum. These experiences are so valuable for younger people, both on and off the spectrum. The way people have BEEN treated shows us a lot about how and why people treat others now and how people identify themselves now.

Anyway, Meistersinger, if you would like to consider it, I would love to hear from you. If you click on the link in my signature line, that takes you to the wordpress I made about my study. There's reading material on there so people can see what kind of person I am and what I have been researching to prepare for the project I'm in the middle of now. The bolded text are links.



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25 Aug 2015, 9:03 am

Thank you for doing this survey! I enjoy telling my story. I do NOT enjoy the memories ofthat timeperiod, but I learned heftily how I SHOULd not treat other people from my former manager and I am told that I am an understanding supervisor because of my experiences.

I would love to read your article.



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25 Aug 2015, 9:33 am

Suggest you have someone with Autism rewrite your material. Your writing style is difficult to follow. Only because it is written can I study your words and figure it out. If you spoke this way, it would be impossible.

BTW: The converse is true of many Autistics. I have the ability to see patterns in disconnected objects and ideas and can glance at a book or a photograph and tell you if the person is on the autism spectrum. It is like your looking at Old-English or a non-native speaker's writing.



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25 Aug 2015, 9:45 am

By the way, i forgot to mention that since I work in a library. my staff noticed what I was and was not placing on hold because our holds are put in a central area with our names on them. I usually reserved my stuff to be picked up in the next city, an hour away, and would make a day trip, but sometimes made mistakes to pick up in my location. One person went to my manager and told her that she supposed i had Asperger's.Lucky i had already disclosed. i am planning on disclosing at the beginning of the rest of my jobs. Disclosure the way i do it has been succssful so far!

by the way if you have any morequestions, please ask away. I am a conversational individual and like to answer things directly and correctly.



SocOfAutism
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25 Aug 2015, 11:11 am

Owlpic wrote:
Suggest you have someone with Autism rewrite your material. Your writing style is difficult to follow. Only because it is written can I study your words and figure it out. If you spoke this way, it would be impossible.

BTW: The converse is true of many Autistics. I have the ability to see patterns in disconnected objects and ideas and can glance at a book or a photograph and tell you if the person is on the autism spectrum. It is like your looking at Old-English or a non-native speaker's writing.


Good point. I had to write that way for my university. I don't speak that way. I can explain any of my material in plain language upon request.

For example: The purpose of this study is to document the experiences of autistic workers surrounding autism disclosure in the workplace. This information should generate academic discussion about the presence, worth and treatment of autistics in the workplace."

This means: I'm trying to make things better for autistic people at work by writing about their experiences of either disclosing or not disclosing that they are autistic. I want to show that autistic people are there, that they are valuable, and that they should be treated fairly.

I originally wrote everything in my work like the second sentence, which I think clearly shows what I am doing and why, but my academic superiors told me it was incorrect to clearly "side" with autistic people.

I also prefer to include pictures with my writing, but I wasn't allowed to do this either.

I will definitely be putting all results on WP as soon as I'm allowed, and I can easily make more than one version of the results so that it's easier to read.

managertina wrote:
By the way, i forgot to mention that since I work in a library. my staff noticed what I was and was not placing on hold because our holds are put in a central area with our names on them. I usually reserved my stuff to be picked up in the next city, an hour away, and would make a day trip, but sometimes made mistakes to pick up in my location. One person went to my manager and told her that she supposed i had Asperger's.Lucky i had already disclosed. i am planning on disclosing at the beginning of the rest of my jobs. Disclosure the way i do it has been succssful so far!

by the way if you have any morequestions, please ask away. I am a conversational individual and like to answer things directly and correctly.


I added this information to your other data. Thank you!



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25 Aug 2015, 11:53 am

SocOfAutism wrote:
Owlpic wrote:
Suggest you have someone with Autism rewrite your material. Your writing style is difficult to follow. Only because it is written can I study your words and figure it out. If you spoke this way, it would be impossible.

BTW: The converse is true of many Autistics. I have the ability to see patterns in disconnected objects and ideas and can glance at a book or a photograph and tell you if the person is on the autism spectrum. It is like your looking at Old-English or a non-native speaker's writing.


Good point. I had to write that way for my university. I don't speak that way. I can explain any of my material in plain language upon request.

For example: The purpose of this study is to document the experiences of autistic workers surrounding autism disclosure in the workplace. This information should generate academic discussion about the presence, worth and treatment of autistics in the workplace."

This means: I'm trying to make things better for autistic people at work by writing about their experiences of either disclosing or not disclosing that they are autistic. I want to show that autistic people are there, that they are valuable, and that they should be treated fairly.

I originally wrote everything in my work like the second sentence, which I think clearly shows what I am doing and why, but my academic superiors told me it was incorrect to clearly "side" with autistic people.

I also prefer to include pictures with my writing, but I wasn't allowed to do this either.

I will definitely be putting all results on WP as soon as I'm allowed, and I can easily make more than one version of the results so that it's easier to read.

managertina wrote:
By the way, i forgot to mention that since I work in a library. my staff noticed what I was and was not placing on hold because our holds are put in a central area with our names on them. I usually reserved my stuff to be picked up in the next city, an hour away, and would make a day trip, but sometimes made mistakes to pick up in my location. One person went to my manager and told her that she supposed i had Asperger's.Lucky i had already disclosed. i am planning on disclosing at the beginning of the rest of my jobs. Disclosure the way i do it has been succssful so far!

by the way if you have any morequestions, please ask away. I am a conversational individual and like to answer things directly and correctly.


I added this information to your other data. Thank you!


I understand why it has to be written this way. For example, I wrote a paper when I was in graduate school on Enoch Pratt, founder of a predecessor bank to what is now PNC Bank, and the public library in the city of Baltimore that bears his name. I used that same paper 15 years later when I applied for a job with a contractor at the EPA, since they wanted a sample of my writing style. The interviewer severely criticized it for being too conversational. I replied to the interviewer that I meant it to be read and understood by whoever picks up the paper.

Academica is not the only place where you have to adhere to a specific style of writing. I worked as a employee for a contractor to the Information Management Support Office, Deputy Chief of Staff--Operations and Plans--Department of the Army--Pentagon. One of my tasks at this position was to edit and maintain the strategic plan for the local area network within Operations and plans. I caught even more flak for changing the wording, poor sentence structure and grammar in this document, because I wanted to be readable not only by the current General Officers, civilians, and contractors within Operations and Plans, but any future people that may replace the current administration in that office.

I write in this style because I had to write documentation for internal use at a major library automation company that was geared toward data entry people who were neither librarians nor computer geeks. I took my cue from the old Beagle Brothers Software Company Manuals, where they followed the KISS principle: Keep It Simple, Stupid! It was also the mantra of the choral conducting professor I had as an undergraduate student in Music History: Anyone can learn anything at any age, as long as it is put in terms they can understand. Which is why I always had so much difficulty: most people could care less about the subject, and told me that right to my face.



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26 Aug 2015, 9:15 am

Meistersinger wrote:
I understand why it has to be written this way. For example, I wrote a paper when I was in graduate school on Enoch Pratt, founder of a predecessor bank to what is now PNC Bank, and the public library in the city of Baltimore that bears his name. I used that same paper 15 years later when I applied for a job with a contractor at the EPA, since they wanted a sample of my writing style. The interviewer severely criticized it for being too conversational. I replied to the interviewer that I meant it to be read and understood by whoever picks up the paper.

Academica is not the only place where you have to adhere to a specific style of writing. I worked as a employee for a contractor to the Information Management Support Office, Deputy Chief of Staff--Operations and Plans--Department of the Army--Pentagon. One of my tasks at this position was to edit and maintain the strategic plan for the local area network within Operations and plans. I caught even more flak for changing the wording, poor sentence structure and grammar in this document, because I wanted to be readable not only by the current General Officers, civilians, and contractors within Operations and Plans, but any future people that may replace the current administration in that office.

I write in this style because I had to write documentation for internal use at a major library automation company that was geared toward data entry people who were neither librarians nor computer geeks. I took my cue from the old Beagle Brothers Software Company Manuals, where they followed the KISS principle: Keep It Simple, Stupid! It was also the mantra of the choral conducting professor I had as an undergraduate student in Music History: Anyone can learn anything at any age, as long as it is put in terms they can understand. Which is why I always had so much difficulty: most people could care less about the subject, and told me that right to my face.


I know exactly what you're saying. Most of my superiors aren't interested in autism.

Before I was an "academic" I managed a technical writing department and before that I ghostwrote for a physician. Before that I worked in a factory where we didn't have to write! But yeah, I've also had to get used to several different styles. Academic writing really bothers me. I don't know about anyone else, but when I see a big block of text, but then bulleted lists and tables, I skip right to the lists and tables and go in to the text only if I have to.

In fact, I DO know about everyone else because I read a lot of eye-tracking studies when I was a technical writer so I know what kind of things people look at and what they don't. But you gotta follow to rules.

There's a sociologist in the UK named Daisy Loyd. She wrote her informed consent for her autistic participants using the pictograph system that they used to communicate. These were high school students, mixed verbal abilities. I could do something on a lesser scale when I'm able to talk about my findings. That will be a few months from now because I'm still collecting surveys now and after that it will take some time to analyze them.



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26 Aug 2015, 9:36 am

SocOfAutism wrote:
Meistersinger wrote:
I understand why it has to be written this way. For example, I wrote a paper when I was in graduate school on Enoch Pratt, founder of a predecessor bank to what is now PNC Bank, and the public library in the city of Baltimore that bears his name. I used that same paper 15 years later when I applied for a job with a contractor at the EPA, since they wanted a sample of my writing style. The interviewer severely criticized it for being too conversational. I replied to the interviewer that I meant it to be read and understood by whoever picks up the paper.

Academica is not the only place where you have to adhere to a specific style of writing. I worked as a employee for a contractor to the Information Management Support Office, Deputy Chief of Staff--Operations and Plans--Department of the Army--Pentagon. One of my tasks at this position was to edit and maintain the strategic plan for the local area network within Operations and plans. I caught even more flak for changing the wording, poor sentence structure and grammar in this document, because I wanted to be readable not only by the current General Officers, civilians, and contractors within Operations and Plans, but any future people that may replace the current administration in that office.

I write in this style because I had to write documentation for internal use at a major library automation company that was geared toward data entry people who were neither librarians nor computer geeks. I took my cue from the old Beagle Brothers Software Company Manuals, where they followed the KISS principle: Keep It Simple, Stupid! It was also the mantra of the choral conducting professor I had as an undergraduate student in Music History: Anyone can learn anything at any age, as long as it is put in terms they can understand. Which is why I always had so much difficulty: most people could care less about the subject, and told me that right to my face.


I know exactly what you're saying. Most of my superiors aren't interested in autism.

Before I was an "academic" I managed a technical writing department and before that I ghostwrote for a physician. Before that I worked in a factory where we didn't have to write! But yeah, I've also had to get used to several different styles. Academic writing really bothers me. I don't know about anyone else, but when I see a big block of text, but then bulleted lists and tables, I skip right to the lists and tables and go in to the text only if I have to.

In fact, I DO know about everyone else because I read a lot of eye-tracking studies when I was a technical writer so I know what kind of things people look at and what they don't. But you gotta follow to rules.

There's a sociologist in the UK named Daisy Loyd. She wrote her informed consent for her autistic participants using the pictograph system that they used to communicate. These were high school students, mixed verbal abilities. I could do something on a lesser scale when I'm able to talk about my findings. That will be a few months from now because I'm still collecting surveys now and after that it will take some time to analyze them.


Let me guess, you either have to follow the Chicago Manual of Style or APA Style manual to write your Thesis.



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26 Aug 2015, 10:29 am

ASA. American Sociological Association style.

That's not the worst of it. Lemme find you an example.

First draft: In order to open a critical discussion about autistic individuals as equal to non-autistics, it is necessary to first address a number of common fallacies held about autistics as a social group.

Submitted draft: In order to open a critical discussion about autistic individuals in this thesis, it is necessary to first address a number of common fallacies held about autistics as a social group.

I was told to remove the comparison of autistics as being equal to non-autistics. The reason I had the reference there is because I wanted the academics reading my work to picture a group of people just like them, with similar strengths and difficulties, as they read through the experiences. I didn't want them to picture a group of people who were lesser. I had to remove the reference because I didn't include an argument later on that autistic people were equal to non-autistic people. I'm already 10 pages over on length so I couldn't include that argument.

The reason I had to put in the section clearing up fallacies about autistic people is because I couldn't even start writing about autistic people without first making it clear that autistic people aren't ret*d, aren't dirty, that their "autism" cannot be separated from them and all sorts of other things that even educated people continue to commonly think.



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31 Aug 2015, 7:47 pm

Two weeks left! I will close the survey in the middle of September, somewhere around the 15th. I'll update here when I get an official date.

If you haven't taken the survey yet, please consider it! Click the link in my signature!

-Any employment, volunteer, or internship counts, even online employment, no matter how long ago
-I want to hear experiences of disclosure AND choosing not to disclose
-There are anonymous instructions on the wordpress if you would like increased privacy
-I am not funded, have never been funded, never sought funding
-I am a sociologist, I do not see autism as a disease or defect, I see autistics as a minority population similar women and people of color
-The purpose of the project is to show disclosure and working experiences from the point of view of autistics
-I'm looking for both positive and negative experiences
-I'm NT, married to an aspie, have an autie brother, and have many friends, family and mentors on the spectrum
-I will try to publish the results afterward and I will make the results available on WP as soon as my university allows

Thanks to all who have helped so far and all who will help!



NYAspie
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12 Sep 2015, 4:45 pm

Did the survey online; sent the other paperwork in via mail last week.


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SocOfAutism
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13 Sep 2015, 7:42 am

NYAspie wrote:
Did the survey online; sent the other paperwork in via mail last week.


I got it! Thank you!

I got an extension, so I will be collecting surveys until September 30, 2015!

I should be able to talk about the data after it's analyzed and written up, which I imagine will take another month. So maybe around Halloween I can discuss results? Give or take a little?

What I can say for right now is that the number of participants and quality of responses I have is already better than the recognized publications I was citing from. I owe that to the Wrong Planet community, who have been responsible for most of the participation.

If anyone else wants to jump on board, I would love to hear from you!