Neurodiversity and Autism in The Workplace: An Interview With Dr. Karen Bopp
“It wasn’t just about changing the kid with autism, but also teaching quote-and-quote typically developing peers to learn how to adjust their interaction style to better engage with others.”
Dr. Karen Bopp is the Director of Provincial Outreach and Adjunct Professor at the Centre for Interdisciplinary Research and Collaboration in Autism (CIRCA) at the University of British Columbia. Her work focuses on giving high-quality professional service and support to families of individuals with autism spectrum disorder (ASD). Last month, the A.WARE Foundation’s Digital Editors, Sydney and Sabrina, had the pleasure of speaking with Dr. Bopp about her career and activism.
*The following interview has been edited for clarity and concision.
Sabrina: Thank you for joining us today. I guess we should start where it started for you. What led you to be involved in helping the neurodiverse and autism communities?
Dr. Bopp: There never really was a moment in time that led me to where I am today. It’s more of a journey. As a teen, I was really interested in working with kids so it kind of started from there. As a young adult, I worked in summer day camp so I was always really interested in finding ways for everybody to be included even in the sort of day camps, way back when, before the early nineties.
In my university years I actually started working with a family in their home whose children were undiagnosed but, you know, the kids definitely had needs. It was a really wonderful learning curve for me to see both the challenges and the rewards that family faced and so from there I decided to become a speech-language pathologist. My passion for working with kids and their families sort of grew from there. And, as an SLP I had the opportunity to work in what was then the only provincially-funded preschool for kids on the spectrum, and so I started to specialize and learn whatever I could from the children, their families, and their colleagues. So it was more of a journey than one ‘aha’ moment.
Sydney: Alright so my next question would be what are some of the changes that you’ve experienced in the field of autism services since you began your career? Particularly relating to using the neurodiversity paradigm, accepting disabilities as natural and normal parts of human variation, while also using strengths-based approaches?
Dr Bopp: Yeah, it has been a shift. It’s been a shift that I’ve sort of seen slowly growing over the past 25 plus years of my career.
When I first started it was really all about therapy for the child, a focus on fixing them to be or act more neurotypical, whatever neurotypical is, let’s just say non-autistic. You heard things like “hands down” and “no stimming” and the focus really was on what they needed to learn, what does the family need to do to fit into society.
And I don’t want you to think that I’m saying that providing supports, services, and therapies to individuals to help them reach their potential is a bad thing. It’s really important that we provide these types of services. They are essential, but they’re only half the story.
So, the other half, which we’ve seen grow over the years, is to provide information and training to others to help them learn how to best support neurodivergent and accept this neurodiversity paradigm that we’re all a part of.
So that said, going back to my first years of doing this, the preschool that I worked in was quite ahead of its time back in the mid-nineties. It was called ‘Leap.’ It was based on a model by Dr. Phillip Strain in the US and it focused on inclusion and how to teach peers to improve their interactions with all kids in the setting. It wasn’t just about changing the kid with autism but also teaching “typically” developing peers to learn how to adjust their interaction style to better engage with others.
So, I really think that that’s where the sort of 'natural part of human experience’ and this strength-based sort of building, was starting to build for me personally. And some of those changes started coming about: thinking about how people look at the world differently and how we can support each other in what we do and our interactions.
Sydney: A lot of it is simple too: we can achieve so much and have richer connections if we suspend judgement just for a moment to see what might this person be feeling or experiencing and how we can approach someone with curiosity rather than dismissal.
Dr. Bopp: “You’re not like me so you’re not accepted”–no, it should be: you’re not like me so I’m interested in how you see the world!
Sydney: My next question relates to this document you recommended about creating rapid learning and improvement methods for supporting neurodivergent people within health systems. It talks about including people with specific conditions in policy-making for health systems that serve them, and how this echoes a cry in the autistic and disabled self-advocate community that says nothing about us without us. How have you personally used the principles of honouring lived experience and collaboration with self-advocates in your work?
Dr. Bopp: First I’ll start by saying that I’m not autistic so I can’t speak on behalf of autistic individuals, but I do think I have something to contribute as a partner and collaborator to improving acceptance and quality of life for others. It takes a village and that village needs to include a lot of perspectives. But I can give some concrete examples of how CIRCA (the centre for interdisciplinary research and collaboration at autism at UBC) how we’ve tried our best to make sure autistic voices are not only heard but are actively involved in setting priorities and in the development of what we’re doing right now which is creating pro-D programs for a variety of sectors.
CIRCA is creating these pro-D programs for 4 service sectors that target not autistic individuals, but the professionals in the specific field to learn about how they can change their behaviour to better support autistic individuals and how to move towards acceptance and inclusion. The sectors are human resources and employers, physicians/pediatricians, dental professionals and childcare providers. We completed a plan including a co-developed process that looked at active collaboration between a wide range of stakeholders in the autism community. We tried to ensure active involvement from autistic individuals and first-person voices at every stage of development. We completed over 50 interviews with over 260 stakeholders including autistic individuals and their families across the province with questions like “who needs to know more about autism and what do they need to know.” We were basically told everything from landlord to physician, and we got to around 35 sectors.
We took it to the next step and looked at larger priorities and asked how we could hone it down to specific priorities that we can take action on. So we brought in the CIRCA advisory committee that included autistic individuals and representatives from 14 organizations and 4 government committees. They chose the 4 service sectors we should concentrate on, and we move to the next step! The first program we’ve already rolled out is autism and neurodiversity in the workplace. In this case, the advisory committee ensured we had a wide representation of individuals on it. They all played an active role in content review and development, and they were compensated for their time as well. That is one way we ensure there is autistic voice in development.
Another one is when we developed the content of the modules, specifically the autism and neurodiversity in the workplace program, we developed a work environment survey in partnership with an autistic self-advocate and the survey was distributed across Canada and was completed by over 170 autistic individuals from across the country. It was these responses of what worked for them in a work environment that became the core of the4 content when developing the strategies presented in the modules. Finally, to ensure the voices of autistic individuals were at the forefront of the modules we interviewed 50 autistic and neurodivergent adults on camera and they shared their personal experiences and gave the content life and meaning.
What we hear from them directly can’t be taught in any other way. It’s more hearing from the voices of people about their experiences. What gives the program life is learning from autistic individuals themselves.
Sydney: I was happy to see the pro-D and the plan you have to roll out a pro-D course for dentistry. As a member of the community, I know many people have sensory issues at the dentist or a phobia response and things like that. Oftentimes people with the most profound needs might not be able to communicate through speech. It's really a serious problem in the community to have so sometimes advocacy works, well keep lists like local directories of developmental disabilities friendly dentists because it's such a non-thing.
Dr. Bopp: Even us choosing the priorities came from autistic individuals themselves. People aren’t inadvertently discriminating but they are unconsciously pushing people away. They’re not making the environment approachable for autistic individuals. There needs to be some understanding and work on the other side too which is what we’re working for. UBC dentistry added 6 hours of curriculum to their dental hygiene to understand autism and neurodiversity. Coming dentists have added 8 hours, and most programs out there don’t include these and people have to figure it out on their own but UBC dentistry has it in the curriculum.
Sydney: The next question was kind of already answered with the programs but specific ways that people, not just you, but how they can incorporate neurodivergent voices into programs. I liked the surveys, interviews, and time compensation is important too. People pay business consulting firms all the time for their business, so if autistic people in the community are basically doing labour to inform about how things can be made more accessible for them, it can be emotionally taxing too, and it's really important to let them know that to set that being valued the same as other consulting methods.
Dr. Bopp: Exactly if people are being involved we value their time and effort so we ask them to track their hours and let us know and make sure they’re compensated.
Sabrina: There was a statement part of the first module as well that talked about matching the person to the job rather than the job to the person which is interesting because it's not about the person having to conform but rather people being open, so maybe you can talk more about that?
Dr. Bopp: In a typical work environment we make and post a job description and try to find a person that can fit and complete that job description. But we have to think about it, no matter who we are and our skill sets we all have our own strengths and weaknesses so matching the person to the job has always been out in the field of employment. But it's more about building on someone’s strengths people have and is probably better moving forward for everyone. When it comes to job retention, reducing turnover rates, improving job satisfaction, increasing productivity, this type of strength-based mentality benefits all employees and employers. Employees are happier and employers have more productive employees. It’s really about working on people’s strengths whether you’re neurodivergent or not.
Sabrina: I really like how you expand on that to everyone as well. Seeing how many troubles people have with their lives since they assign themselves to restrictions and are limited to their occupation. With COVID there has been more online work, and with technology, people are able to be advocates full time while having a job too. Do you think this can help promote what we’re talking about?
Dr. Bopp: Yeah I hope so. We’re more productive when we’re happier at work, and we’re happier if we build on our strengths and do things we love and I think in this world you can– for some people it’s difficult being away from the office and a social structure so it doesn’t work for everyone, but for others, they’re getting easier access. They're cutting down on commute time and all these issues to do other things in their jobs. Now they actually have time to volunteer for organizations, and it's all about the flexibility of people’s times and employers understanding that more flexibility in jobs creates happier and more productive employees.
Sabrina: Do you think something like this could translate to the education system too?
Dr. Bopp: If you look at the programs we’re creating, especially the first one, it really is for anyone. Anyone can take it for free and is funded.
The first module is called “understanding autism.” It's really a universal module for any service sector including educators. You learn about key features of autism and address common myths and stereotypes, and can really help others understand and accept the differences in others. In this module, you learn autism isn't so mysterious or different. In subsequent modules, we learn strategies to help anyone with a diagnosis or not to work at their best. It can help teachers improve their students and work at their best, or help students help other students work at their best. These strategies can be used for co-students just like co-workers, and even as a teacher vs an employer.
Sabrina: I really like how you highlight it's not the individual's job to change and act so everyone around them feels better, but rather a community effort.
Dr. Bopp: It's a two-way street. In society, I can't say I want everyone to act like how I want them to but I ask myself why I should have to do all the changes.
Sabrina: What do you recommend for everyday advocacy or help for the autism community?
Dr. Bopp: For me, it's making sure to keep your mind and your ears open. I’ve learned to listen and learn, I’ve even learned to address my own unconscious biases and how I interact with others every day. Being in this field there’s no one way or method to advocate for the neurodiverse and autism community. As long as you progress and encourage others to do the same and to listen–not tokenism and only listening to one person– you really need to do it actively and in a genuine way. I’m not saying that at CIRCA we always do it right, but it's just about constant learning and listening from others and if you’re doing that then you’re on the right track.
Sabrina: I like that you talk about tokenism because I’ve seen it in books, movies, and it really just shoves the whole thing under the rug for the community so thanks for talking about that.
Dr. Bopp: Yeah you can’t just say “I’ve got a couple of families on my committee.” I mean that's great but what's the involvement? I've learned that there are a lot of perspectives and even autistic members of my committee say that they’re not a perfect representative of their community and to make sure what they're sharing is just their voice which is why we try to do a variety of things when we develop our programs. It's not just about one or two voices but consultations, communication, and conversations, and surveys every step of the way. In surveys, we can ask hundreds of people what they think, and in interviews, we can get people to actually talk about their feelings and opinions to get a more fulsome approach.
Sydney: Well thank you so much for being with us!
Sabrina: Thank you for your time!
Dr. Bopp: Thank you so much Sabrina and Sydney and good luck!
