Frequently Asked Questions
Who can participate?
How much time does the survey take?
Who is doing this research?
Why did you create this survey, and why are you interested in autistic people's experiences with employment?
How is this project being funded?
Will I be paid to participate?
How will my answers be used?
How will my privacy be protected?
Why do you ask questions about race/ethnicity, gender identity, transgender status, or other sensitive topics?
How can I see the results of the survey?
Who can participate?
The survey is designed to be taken by anyone who:
- Is 18 years of age or older
- Can read and understand a survey written in English
The survey is open to anyone who is able to take an online survey in English; however, recruitment is specifically targeted toward people who identify as
autistic. Responses from people who are not autistic will allow for comparisons between autistic and non-autistic people's perceptions of autism employment
programs.
Because a lot of the existing research on autism and employment focuses on young, white, male autistic people, we are especially interested in
getting responses from:
- People of color
- Women and non-binary individuals
- Older adults
We are also looking for responses fom people who have participated in Autism at Work or other autism hiring programs, though this is not a requirement for
taking the survey.
You do not need to have been diagnosed by a professional, and you do not need to have a job to participate.
How much time does the survey take?
The survey is designed to take about 30 minutes to complete. Since not every question will apply to every participant, it might take you more or less time, depending on your answers.
Who is doing this research?
This survey was developed by me, Ian Moura. I am an autistic adult from the United States. You can find more about my educational and professional
background on LinkedIn.
Dr. Dora Raymaker, of AASPIRE, helped me to receive Institutional Review Board (IRB) approval for this
research. Dr. Raymaker and other AASPIRE researchers will also be providing guidance as I analyze the collected data. You can learn more about
AASPIRE's research on autism and employment here.
I have consulted with a number of other autistic people, as well as some researchers and experts who very kindly offered to review the survey and
offer feedback on it while I was creating it. However, any errors or oversights are mine.
A few groups and individuals have generously offered to share the link to the survey via email lists and/or social media groups that they organize or
moderate. Sharing the survey link does not mean that these individuals or groups are formally affiliated with the project, and they will not have access
to the collected data.
Why did you create this survey, and why are you interested in autistic people's experiences with employment?
I became interested in autism employment programs after I participated in one. Although programs like the one I participated in receive lots of positive
press, I was disappointed in the program I went through, and started wondering if other people were also having negative experiences that were not
publicized. As I did more reading and looked into what kind of research had been done on autistic adults and employment, I found that there was very little
research on autistic people's self-reported experiences finding and keeping jobs. The studies that do exist have mostly talked to or surveyed only a small
number of autistic people. That seemed like something worth changing, so I created this project.
You can read a more in-depth description of how and why I created this project
here.
You can read an article I wrote about Autism at Work programs, after attending the 2019 Microsoft Autism at Work Summit,
here.
How is this project being funded?
This project is self-funded, which means that all costs are being paid for by me. I worked with AASPIRE to obtain IRB approval, and the survey was approved by Portland State University's IRB (PSU IRB #163820), but the focus of this survey was determined by me, and the opinions expressed on this page are my own.
Will I be paid to participate?
No, you will not be paid to take the survey.
How will my answers be used?
Your answers will be used to understand the experiences autistic people are having related to employment, and to better understand the efforts autism employment programs are making to improve those experiences. Data from this survey will be analyzed to learn more about autistic people's experiences and challenges with employment, and ways in which autistic peple would like to see autism hiring and employment programs changed.
How will my privacy be protected?
The answers collected from the survey are anonymous, and will not be associated with any identifying information (like your name, phone number, or email
address - in fact, the survey doesn't even ask for those things). Only myself, other investigators from AASPIRE, and key personnel will be able to see the
anonymous data that the survey collects. Once I am done collecting responses, I will analyze them, and when I talk about survey results or share them with others, I won't be sharing
a single person's set of responses. What I will share is the aggregated data. For example, that means that I might say that 1 in 3 people answered a question a
certain way, or that people who answered "Yes" to one question were more likely to answer "Yes" to a different question as well. I may also share longer answers
that come from comment boxes on the survey, but as with all of the other answers, your responses to those questions will be anonymous. I will do my best to only
use quotes where it is difficult to tell whose quote it might be from the context.
I am gathering survey answers using a password-protected SurveyMonkey account, which only I have access to. Once the response collection is complete,
that data will be downloaded and stored on a password protected computer. Data will be backed-up to an external drive and stored in a password-protected file.
Responses are being collected using SurveyMonkey. If you are interested, you can read their
Privacy Policy or their
Security Statement.
Why do you ask questions about race/ethnicity, gender identity, transgender status, or other sensitive topics?
I ask questions about topics that might be sensitive for some people because I want to understand how belonging to another group that may face discrimination in
the workplace might influence the kinds of experiences autistic people have. For example, a Black autistic person might have a different experience depending
on whether someone is reacting to their race, the fact that they are autistic, or both. A lot of research on autistic people doesn't really look at how all
the different parts of a person's identity and background might influence the kinds of experiences they have. Although these questions can feel a little personal,
asking them is one way to start thinking more about the different kinds of challenges autistic people might face based on other aspects of their identity.
If you are uncomfortable answering some of the demographic questions, you may choose not to answer them (there is an option for "I prefer not to answer this
question"). You may also skip any questions on the survey that you feel uncomfortable answering. Additionally, you may choose to stop taking the survey
at any time.
How can I see the results of the survey?
AASPIRE publishes results and information about its studies on its web site, aaspire.org. Additionally, AASPIRE works with several community-based organizations to share research results with the autistic community, policy-makers, and others who may be interested.
Do you have additional questions that are not answered here? If so, please email imoura@pdx.edu.