I recently received $467,000 from two federal grants to launch a community based participatory research study to understand the challenges and success factors for autistic people in the workplace. The study focuses on skilled or professional employment, rather than entry level positions. This study is personal for me. My path to career success included overcoming discrimination, multiple career shifts, and experiences with a disability services system often ill-equipped to provide support in skilled settings. My study will seek to understand what helps autistic people do well professionally, and develop a plan to improve professional outcomes.
I will be back at 7 pm ET to answer your questions, ask me anything!
What are some of the strategies, environments, etc. that you've found which promote people with ASD's ability to be successful professionally? Is there anything employers can do to ensure greater success for their employees with autism? It's my understanding that people with autism often struggle significantly in professional environments, despite the fact that they're often highly qualified skill-wise, and I'm curious if any successful solutions to this have been found.
I love this question so much! (indeed the answers to it are really what our study is about) Anecdotally, working individually with the person to address sensory, communication, and other needs they have to be successful is the best advice I can give. Everyone on the spectrum has different needs, but often they can be addressed as simply/inexpensively as swapping out a light bulb, letting someone work from home, or swapping around a few tasks. I think being willing and open to address workplace accommodations is the biggest thing. Our study will be collecting this data more rigorously. Until then, you can look at the Job Accommodation Network for ideas, and also ask autistic people directly. https://askjan.org/
Hi! I'm autistic myself but I don't think I've been discriminated. Mainly colleagues thinking I'm stupid (makes same mistakes all over, can't improvise) or arrogant (can't do smalltalk while working, don't do as they instruct me because I need very basic instructions) but that's not discrimination per se. In what way have you been discriminated? Your work seems very interesting.
Discrimination is being treated unjustly because of something that’s different about you. Some examples from my experience: I’ve had trouble with people not believing I can do work because of how I look or sound (sometimes they think I’m stupid too, or don’t want to take the time to explain things), not being willing to give me opportunities, having to deal with less pay for the same amount of work as others, things like that. I also appear female, so I encounter the typical issues women do in our society.
I was wondering what advice you may give for peoples with Autism looking to gain employment and struggling with the process?
It’s hard for me to give advice broadly without understanding specific contexts as everyone’s a bit different. Generally I might say be aware of the Americans with Disabilities Act, how to talk effectively with employers (HR) about getting workplace needs met. Potentially work with vocational rehabilitation (although there can be struggles there with respect to understanding professional work). I’d also say think outside the box--if there’s a job task that won’t work, try asking if it can be changed; if a job interview process is going to be problematic, ask if a job try-out is possible. Again--take this advice with a grain of salt because the real answer depends so, so much on what the challenges are.
Do you feel it is worthwhile for high functioning individuals to disclose to current or potential employers that they are on the spectrum?
I am interested as to whether disclosure has a positive effect on the individuals' working environment and interactions with coworkers, or whether stigma/assumptions/ignorance from others actually creates negative feelings and resentment (particularly in cases where reasonable accommodations are requested by individuals who are not "obviously" disabled).
Because I lost a job and a career due to not disclosing, I tend to get a bit soap-boxy about this topic. Disclosure to HR means access to protection and accommodations under the ADA. Also, disclosing (if one feels comfortable) to managers / co-workers / etc. can sometimes help in terms of them understanding you better and therefore treating you better (even if it’s not “obvious” we can still stand out weird). That said, it can also be a risk for some people due to the very unfortunate on-going stigmatization of autism in our society. Safety should always be weighed along with other factors.
Hi, thanks very much for doing an ama! What struggles do people living with autism experience in professional work environments and how does that differ from entry level positions? More personally, what struggles have you had to overcome in professional settings? Thanks again from a fellow Portlander!
Hello from PDX! Challenges can come from mis-matches between work environments and sensory, communication, or other types of needs employees might have; for example, few people like a work environment with florescent lights, but the lights don’t make everyone unable to manage their tasks--with us, they might. Skilled jobs have some additional challenges around job tasks, their highly competitive nature, and social misconceptions around what autistic people can and can’t do.
Hi Professor Raymaker,
I am a child and adolescent psychiatrist who works with many people across the autistic spectrum, from the extremely disabled to the differently abled. The spectrum is so impressive in its width (I remember treating two children, one who saw me as literally an object in his environment and had zero interaction except self-aggression, and the other who I chatted with about D&D strategies for anti-paladins). What is your thought, both personally and professionally, about the breadth of the spectrum?
I think it’s a complex, movable/moving target. The time of someone’s life, the environment they are in, how they’ve been treated by others, stressors, possible co-occurring conditions, etc. People who aren’t autistic have a wide range of capabilities too, that can shift with time and conditions. I typically try to think in more pragmatic terms of how can needs get met better; I work in a messy corner of research where categories aren’t always useful. Disclaimer: I’m not a clinician or an experimental psychologist; I do social services research :-)
Hello, Dora Raymaker.
Are you going to be studying the entire autistic spectrum or a specified type?
Thank you for doing this AMA!
Our study is open to anyone who has a diagnosis of autism spectrum disorder (ASD), autism, Asperger’s, PDD-NOS, Rett syndrome, or CDD.
How has the handling of autism in professional environments changed as the general public becomes more aware of the disorder? Would you say that people are more accepting nowadays than in the past?
I have the fortune to live in Portland, Oregon, where the weird is celebrated (plus I’ve only worked in STEM where a lot of us gravitated), so I’m not sure I have the most objective sense for this more broadly. Statistically speaking, things are not particularly improving. In terms of awareness, being “aware” may matter less than what people are “aware” of. If it’s awareness of autism as a horrible disease that will wreck people from ever being employable, that is not going to be helpful. If it’s awareness that we can be successful employees in a wide variety of professional contexts, then that can really help shift the system.
Thanks for joining us! How are participants selected? Will an effort be made to include women (the majority of research is based around men, to the extent that communities of undiagnosed women have popped up in support of each other because no one else is)? Who will be used as controls?
We’ll be selecting participants who meet the inclusion criteria for the study (you can learn more here: http://aaspire.org/employment). We are definitely making an effort to include women, and are hoping for 50% of our sample to identify as female. This study doesn’t use controls because it’s an exploratory qualitative study. We are seeking to understand something little is known about, not to test a hypothesis.
Are there particular workplace settings/fields of work that are better or worse for Autistic people?
If it’s a bad match for skills, interests, and needs, then it’s worse. Other than that, all the fields!
Oh! Another question I thought of. Will your study track early/late/self diagnosis? I have found that among my autistic friends, those who were diagnosed early and went through special ed. programs tend to have different experiences with discrimination than those who were diagnosed as adults.
We're not explicitly tracking, but if people disclose that information in their stories it will be included in the analysis.
Hi Professor Raymaker,
My name is Christian Jensen and I too have autism (Aspergers) and I'm an employee at Specialisterne (the Danish branch).
Specialisterne have the goal of enabling 1 million jobs worldwide for people on the spectrum and we are currently in Denmark, USA, Ireland, Northern Ireland, Switzerland, Spain, Brazil, Germany, Canada, Norway, Iceland, Austria and Australia trying to make that happen.
I'm sure that if you contact our foundation they can help you with your research by sharing our experiences with the subject. Ask us anything.
BTW if anyone in this thread wants to ask me any questions they are welcome to do that too. Just know that this is my private reddit account and I'm at home with the flu and can't ask any coworkers or managers at the moment, if I don't know the answer.
Hi there, thanks for reaching out. I've got my helper flagging your comment so I can get back in touch with you later.
In your career, what are some unexpected discoveries you've made conducting past experiments?
I’m not an experimental researcher; I’m an intervention / social services researcher. That said, I can tell you about a surprise in the data. In our healthcare study, we were trying out a healthcare toolkit for autistic adults. We didn’t expect to see it making much of a difference in people’s lives because we only gave them a month to use it, which isn’t enough time for most people to see their providers. However, there was a positive change, which totally surprised us. It turned out from the qualitative comments about the study that simply being aware of rights and accommodations in healthcare was empowering and change-making in itself. We had not expected that; it was interesting and exciting.
As a public policymaker involved in passing federal legislation related to autism who is on the spectrum myself, it is clear to me that the public's understanding of autism has increased over the past 15 years, but there is still quite a ways to go. There is increased recognition of the fact that kids with autism don't just disappear into thin air, but that they become adults who generally require some specific accommodations in order to succeed in the workforce. Unfortunately, I've found that much of the appetite for addressing the issues of autism employment and services is at the more severe end of the spectrum, and there's not much being done to address the very real needs of the higher-functioning individuals. Will your research address this? Do you have any preliminary findings that can assist policymakers?
What you say here is part of why we've chosen to focus on skilled employment in our study. As you note, there are many more programs out there for entry-level potions, but very little has been done to address people who may have advanced degrees. Our study is hopefully the first step in designing a program that would focus outside of entry-level jobs. I don't have preliminary findings yet, but very much hope to have some to assist policy makers by the time the study ends. Thank you for your work!
Hello! I'm a female autistic from Lake Oswego, and I would be interested in participating in your study. What precisely do you mean by "skilled and professional" employment?
Hi there! Here’s a link to the flier and you can get more information. Skilled employment in this study is employment that requires some form of specialized training, moreso than someone could get ina few week’s training on the job. Feel free to contact us directly! http://aaspire.org/site/projects/employment/narratives-of-autism-and-skilled-employment/emp-employee-flier/
What FOR YOU, was a positive turning point in your education that allowed you to get to where you are now?
My amazing mentors. As a teen almost not finishing school/being institutionalized/really screwing up it was not wanting to let down two special teachers. In graduate school, my collaborator and colleague and AASPIRE co-director Christina Nicolaidis mentoring me in how to do this science thing and giving me opportunities. People who cared really mattered to me.
Outside of discrimination, what do you see as common challenges those on the spectrum face that others not on the spectrum take for granted in the professional workplace?
I would say the impact of the “little things” in the environment. Sometimes we can get through the day but only at a sensory / emotional cost. The cost of coping with sound, lights, interpersonal interactions, having to stop the flow of thought and work to answer a question and then transition back--if there aren’t good accommodations those things can pile up.
Thank you for doing this AMA! I know that there is a lot of overlap between the autistic and trans communities, and that being trans or gender non-conforming has an added impact on employment rates and workplace discrimination. Will your study be tracking additional factors that impact discrimination in the workplace such as race, gender, trans status, mental illness, physical disability status, etc.?
YES! Yes yes yes yes! We have an interview question that specifically addresses this and it’s part of the study. Intersectionality is an important part of the employment equation. Thank you! Yes!
I would be interested to hear your thoughts on a task based work day versus a more traditional time based workday.
I think matching up the type of work day to someone’s work style is typically best for anyone. Personally task-based is what I need because I can’t always function well at a particular time. It’s one of the reasons why I’ve actually had more success in skilled work than unskilled, which tended to be more of a time-based model.
Hi Professor Raymaker,
Thanks so much for doing this AMA, I love the idea of community-engaged research! My question is - how has accessibility played a role in the design of this study? Are there any specific methods or ideas that you utilize to ensure the questions you hope to answer remain accessible to the populations you work with?
I love this question. It has two branches of answers. One is that people on the spectrum created the study design and materials and we spent a lot of time working on the accessibility angle. The other is that we try to maximize accessibility to the studies, so we offer the interviews in a variety of modes. So we use the community-engaged piece to try to create accessible materials in the first place, and then we do our best to design studies that people can participate in in the ways they work best. We are ALWAYS happy to meet people’s further accessibility needs (e.g. have a support person present, provide ASL interpreter, etc.).
I too am autistic and hoping to enter this field of research! What was your primary focus in college? I've been looking at a research Neuropsychology major, but would certainly love any college based advice you can give about entering the field.
Do you face many challenges in the field and laboratory not only being a woman, but an autistic woman at that? How do you cope and work with less than agreeable lab techs/others?
My degree is in Systems Science--I’m a complex systems / complexity generalist who is working in the field of social services intervention (hugely complex system!). “The field” is a little broad for me--social work research, for example, is very different from experimental psychology. I’d broadly recommend looking for where people are doing the type of work you’re interested in and applying there. Finding mentors is key (I know, way easier said than done). As far as the intersectionality with being a woman, oh yes, there are additional challenges, certainly. Part of the reason I ended up in social work instead of designing robot brains (seriously, where I’d started my grad school wanting to do) is because of gender-based discrimination. I don’t do the type of research that has labs.
As someone who has devoted their life to helping people with autism, how enraging is it to hear bigots using the word "autistic" synonymously with "stupid" and "bad"?
I personally have a difficult time letting it go, as I and some of my friends are on the spectrum. I find myself wondering what your thoughts are on the issue, and if you think it is due to the staggering amount of misinformation that is out there on the topic, or simply due to people's insensitivity.
It’s pretty enraging. And misinformation, insensitivity, yes, also institutionalized oppression, cultural norms, many, many factors. Don’t let it go. Big, complex systems like social systems take a long time to change, but every little nudge we give shifts them a little more toward a tipping point. Be kind about correcting, but do correct. And thank you. I appreciate you :-)
What are unique gifts and strengths that those on the spectrum contribute in a workplace as they become managers or progress through their career?
Special interests are a powerful thing :-) But also, we’re people and we possess unique gifts and strengths like all people as they progress through their career. Some autistic traits can be powerful strengths in the workplace, but it’s important to see we have regular strengths too.
This is very exciting for me, as a fellow autistic woman who is currently working on a video course for employers who hire neurodivergent people, in order to help them understand accommodations that will be mutually beneficial for employer and employee.
What is the scope of your study, both geographically and in terms of severity of autism among participants? Will the study address the problems in using functional labels, since "high functioning" and "low functioning" only describe how neurotypical people perceive us?
Thank you for doing this research, and I look forward to reading the results of your study when it has been completed!
Thanks for your work; it's needed!
Our study is U.S. only, though it is national. We are not looking at severity (study criteria is an ASD diagnosis of some type and experience having or looking for a skilled job). We do not use functioning labels. We do not find them useful in any way.
How did you manage to have a successful career? I do badly at school and socially because of my Aspergers and it's preventing me from being able to get a decent job or good scores as a prerequisite for uni. Do you have any advice?
I did badly at undergraduate too. I learned how to find "back doors"--ways around traditional requirements for things. My undergraduate grades were below what my grad program would accept, so I took graduate courses and aced them, one of them from one of the main professors in the program I was applying to, then got good recommendations. In my application to the program I was honest that my undergrad grades were bad because I didn't have good disability accommodations, but that I had them now, and could succeed, and they could tell because of what I had a current 4.0. That's how I got accepted without meeting the requirements. So I do a lot of that--trying to find alternative solutions. Best of luck to you in your own journeys.
What is it like being autistic and working others that are autistic? I would assume it is a thrill to be working with them to make their lives better and that you definitely understand what they are going through
It’s lovely to, for that moment at least, not be in the minority :-) I also believe that there’s a lot of value in “insider researchers”--people who have some lived experience in common with the population they work with-- because we are able to side-step some faulty assumptions outsiders can make, and also, as you point out, better understand our populations.
How do you deal with always being on the outside? By this I mean how is not being normal and always asking weird questions or bringing things up that have nothing to do with the conversation.
Sometimes I deal with it better than other times. I have been lucky in finding some fellow weirdos who ask equally nonlinear questions, and that helps. When it doesn't, there's always banging out frustrations at the gym... :-) But yeah, it also kind of sucks and I've just had to learn how to be okay with that too.
Hello Dora, thank you so much for participating. As a parent of a high functioning child with ASD, what do you think are the most important things I can do to help them prepare for a professional career in the workplace?
Things my own parents did to help me were: encouraged my special interests in ways that could merge into career, never tell me I couldn’t do something, provide opportunities, build up my self-esteem, and have my back (advocate).
Hi! I actually could use some professional help if possible!
I am autistic too and becoming a special education major. Is there any research or reliable sources out there that reflect the views of the autistic community? (ID first language, anti-ABA, things like that.) I want to find some resources to present to my professors and colleagues so they don't get the wrong ideas about people like us and end up making their students suffer and have all kinds of internalized ableism.
Hi there, I love that you're becoming a special education major! I love even more that you're working against internalized stigma. We need more of us working with us :-) ASAN has put together a nice resource page, which might be a place to start http://autisticadvocacy.org/resources/ When I need to talk to people who are more academic about ID first language, I've been pointing folks toward Autism journal's guidelines because it's one of the leading autism journals in the world so they believe it more than they sometimes believe us. Here's a link to to that statement: https://uk.sagepub.com/sites/default/files/terms_for_autism_-_manuscript_submission_guidelines.docx
I don't have a question but i'm absolutely astounded at how things like this bring out people and issues that i, as a "normal" person would never even consider an issue/possibilty, its definitely an eye and mind opening experience reading through all of these comments and recognize that my little slice of the world would never have been shown these if not for places like reddit and the opportunities it presents.
just so i am not asking zero questions, Mrs Raymaker how has being so dedicated to improving your career affected your ability to maintain relationships outside of your work environment?
Thank you so much for doing this AMA
Thanks for the feedback - I really like hearing things like what you write; it makes me feel like the work is worth it :-) Thanks for being open to curiosity and the new!
As far as your question...most of my relationships are related to work. Like, I spend time outside work with my colleagues inevitably talking about work (and trying not to). My observation though is that this is often true of people in demanding careers. Life/work balance sigh
What are some challenges and benefits of participatory research design in engaging with the autistic community?
The benefits include (but aren't limited to): Research the community feels is helpful to them / meets their aims / respects them, better research design, more ethical research, more accurate analysis and interpretation, better access to research participants / diversity of perspectives. Challenges are mostly that it takes longer and the academic / funding system isn't set up well for it. Thanks for this question; it's an important one.
Hi Dora, thank you for doing this AMA!
1) My name is also Dora. There are so few of us - I just wanted to say hi!
2) I am wondering if you are making a study of all autism spectrum disorders and skilled or professional employment - i.e. are you including people with Asperger's syndrome and other similar disorders?
3) Are you going to make your research findings publicly available? If so, how are you planning to do so and can I be first in line (or second, or whatever - I just would like to get a look at your findings and recommendations, etc.)?
1) Yay Doras unite! 2) The study is open to anyone with a DSM-IV or DSM-5 diagnosis; you can learn more at http://aaspire.org/employment 3) Yes, though it could be a while. Our findings and other public dissemination / media / etc. information is always posted at http://aaspire.org. For this study it will probably be 1.5 - 2 years before we're far enough along to get results out. Science is slooo
Hi Professor! I'm a researcher as well, and a lot of the group leaders and professors at my Institute are autistic, or on the spectrum. Do you think autism can give people a different 'style' of thinking that allows them to succeed in certain roles?
I think we can sometimes look at things in new, fresh ways; diversity can be a powerful source of creativity in the workplace. However, I generally caution against "certain roles"--we can excel (or not) at the same range of roles anyone else can depending on skill, interest, talent, etc. In other words, I don't believe autistic thinking is "better" at any one occupation, field, role, or job task versus another.
Can you provide links with details on the 2 grants you received? How long did it take for them to be approved?
The review cycles for the grants are in the details. https://grants.nih.gov/grants/funding/r21.htm https://www.pdx.edu/exito/pilot-project-application-details
Would you say you are the explora of your field?
Hi! Any ideas on how autism intersects with sex and race in the workplace?
This is a core construct we'll be exploring in our study. So, not exactly yet, but I hope to have a more solid answer by the end of the analysis.
Should we steering people with autism into professions where their particular characteristics would make them likely to excel? (E.g. proofreading, sound engineering, airport X-ray monitoring.)
Should we also be telling employers about how people with autism can excel in these niches, and how to create an environment in which they can work comfortably?
I'd recommend steering people on the spectrum toward professions where they have interest and desire and skill. If that's a professional ballerina, a hair stylist, a lawyer, or a graphic designer, cool. QA, detail-oriented work, engineering, etc. are stereotyped professions that may work for some people but we cover the full range of humanity in terms of interests and talents too. Certainly yes to telling employers about how people on the spectrum can excel and how to create a comfortable environment! That is good to do in any field!
I have Asperger and I am employed at a university. I think it's a reasonably good niche for ASD people and I don't think my Asperger is currently a major hindrance for my development. Others are less fortunate. My question is:
How can I help?
Hi there, we're currently interviewing people on the spectrum and people who supervise/support people on the spectrum (some individuals may be both). If you think you might like to contribute to the study you can learn more here: http://aaspire.org/site/projects/employment/ There are links toward the bottom to information on how to potentially get connected to the study (the recruitment fliers).
Hey Dora! I am a PhD researcher in Digital Health where we look to assist people with virtual reality. I have come across it being used to assist job interview training for a range of mental health illnesses including autism, and I can see it being useful for other areas around employment. Could you tell me more about the professional outcomes you intend to create a plan for?
That sounds like very interesting work! Clearly defining professional outcomes is actually part of our study--what do people on the spectrum themselves consider a successful professional outcome to be? That is one of the constructs we're exploring and I hopefully will know more by the end of the study.
Do you think that autistic people can become successful managers? My worst boss was autistic - she was a tyrant who bluntly stated that she did not care about staff morale.
Yes, I think they can. My staff might disagree, but I've been relatively successful in management roles. Here's another example: http://asdculture.wikispaces.com/About+Karla
Non-autistic people can be awful, tyrranical managers too; unfortunately those of us on the spectrum are not exempt from all the other foibles of humankind. I'm sorry you had that experience.
- t3_5wj58r_comments.json 313 KB
This article and its reviews are distributed under the terms of the Creative Commons Attribution 4.0 International License, which permits unrestricted use, distribution, and redistribution in any medium, provided that the original author and source are credited.