Best Practices in E-Learning Spotlight: Designing Online Courses With and For the Autism Community

I’m delighted to announce a new feature on the blog where I highlight public health e-learning projects that I think exemplify best practices and innovative approaches to our work. Today I am interviewing Emily F. Rothman, ScD from Boston University (BU).

1. Welcome! Please introduce yourself and your work to my blog readers.

My name is Emily Rothman and I am a Professor and Chair of the Department of Occupational Therapy at Boston University Sargent College of Health & Rehabilitation Sciences. I have been a researcher for 25 years and for most of my career I have focused on intimate partner violence (IPV) and sexual assault prevention. Over the past eight years, I have started a new line of research focused on autism, neurodiversity, and disability and healthy relationships.

2. I find it really interesting that your primary appointment at BU is within the occupational therapy department. I’m not sure many public health professionals realize the potential for collaboration there- can you say a few words about how public health and occupational therapy intersect?

It’s a little idiosyncratic how I wound up there. I’m not sure I would necessarily say that it’s a natural segue for people in public health into rehabilitation science, but I guess it could be. I was a public health researcher for a long time; I was at the school of public health for 17 years. I have a family member who is on the autism spectrum, so I was doing a lot of reading about autism. Then for many reasons I needed to pivot my funded research lines to align with the fact that I was learning so much about autism. By becoming more of an autism researcher, I was (without really knowing it) entering a new world of rehabilitation science. There are a lot of people in occupational therapy who think about and study autism. So the leadership position within the department of occupational therapy came at the right moment in my career.

3. I was inspired to reach out after learning about two recent e-learning projects that you’ve lead: Autism Training for Sexual Assault Counselors and HEARTS (Healthy Relationships on the Autism Spectrum). Can you describe how the needs for these trainings were identified?

With the college sexual assault course, I had done an analysis of data from I think 78 colleges and universities. My team looked at the prevalence of sexual assault among autistic and non-autistic students, and we found that the prevalence was the same. It wasn’t any less for autistic students but we also knew that college sexual assault offices weren’t trained or specifically prepared to serve neurodiverse and autistic students. So knowing that, the next logical thought or step was to think about how we could train those counselors. What would we want those counselors to be thinking about or doing in order to provide excellent service? So that was the starting point and then we had an online conversation with almost 30 college personnel who worked in college sexual assault offices or disability access offices. They told our team that this kind of training was needed. So that was a second layer of formative research. As a third layer, we put together an advisory board of autistic people who had experience with sexual assault and campus services and they provided rich in-depth feedback about what went right and what didn’t go right. We kept them on throughout the development of our online training and beta testing.

With HEARTS, that one had quite a bit [of formative research] because it was funded first by a small foundation grant that helped us get started with an online class on dating and relationships for autistic high school kids. We realized that wasn’t quite right, so then we got NIH funding to do interviews with autistic youth and parents and providers to find out what kind of class was needed. And then more NIH funding to develop and test the class called HEARTS, as it is today [for ages 18+]. And that’s a class that was co-developed with autistic people and is now co-facilitated by autistic and non-autistic pairs who team teach. We’ve gotten qualitative and quantitative feedback on how that class is working for people.

4. One of the things that I’m most excited about when I see your e-learning projects, is that you bring together autistic and non-autistic collaborators to develop (and in some cases, deliver) the courses or trainings.

Why did you make that collaboration decision during the design and development process?

I was very aware that I was a real newcomer to the world of what works for autistic people. It is both ethical and also practical [to collaborate with those who bring lived experience]. I believe in the “nothing about us without us” disability rights slogan. I would not want to presume that I could do this research that’s supposed to benefit autistic people without making sure that it’s by autistic people and for autistic people to the extent that I can possibly facilitate that.

From a practical side, there is also so much that I don’t know and can’t know because I’m not autistic. There are so many generous (with their time) and insightful autistic people who want to be involved. Making sure that they’re compensated and included equitably is really important.

Can you describe how that choice led to the creation of a better course or training (e.g., are there 1-2 insights your autistic collaborators brought that changed how you thought about course content, delivery, etc.?)

There was a lot! The first one that comes to mind is designing the PowerPoint. I learned from autistic collaborators that PowerPoint slides that are black and white, or black, white, and grey are easier to read and less visually distracting. It’s really important to keep the information visually clear.

One other example I’m thinking of: whenever I’ve done healthy relationships education with general audiences before, it’s standard practice that you talk about warning signs of abusive relationships, what counts as abuse and what doesn’t. We have these lists of behaviors (e.g., hitting somebody). I remember teaching this class to autistic people and getting to those slides and some of them started thinking of scenarios where those behaviors could be okay. “Like what if someone is your partner but you’re in a bank during a robbery and they have to hit you to get you down to the floor to save your life….” They were just really struggling with any kind of list where things are good or bad because you can often think of some type of alternative. So we had to figure out how to present information that acknowledged that you may be able to think of exceptions or that a fact is true “generally” (although this type of disclaimer could then send some autistic people off into confusion, when they just want a clear answer).

It’s an important teaching skill to know that autistic people are really diverse. The way they are going to want information explained is going to vary by individual. There isn’t a group default setting that we can use for teaching. So there was a balancing act between trying to be clear and careful and acknowledging how we can best meet everyone’s learning needs. So that’s been interesting and challenging! Our strategy has been to do the best that we can with full apologies if we’ve left anyone a little bit confused. We use language like: “Let’s not get stuck here. The best I can say about this is that it’s true in most situations. The point I’m trying to make is…” Keep people moving instead of getting stuck.

Any advice for course creators who want to engage collaborators with a particular lived experience?

Number one- pay people! It should go without saying, but I understand people may not have big research budgets. Some researchers may say to themselves, “Isn’t it better that I’m at least being inclusive even if I’m not paying people?” But I think that’s problematic. People with lived experience really deserve to be compensated for their time, like all people. The payment (and it being an adequate payment) is really fundamental. That goes a long way towards building trust.

The second piece of advice is build trust over the long term. It depends on the collaborator, but some may have executive function challenges or bad days or tough moments, but depending on the population, they may have a tougher time reacting to your materials in the way that you want or the way you’re expecting. So you want to use a lot of flexibility and figure out how to be accommodating. E.g., I thought a group Zoom was going to work for feedback but it’s not, so I need to do individual phone calls and they don’t want to turn their camera on. So I recommend being flexible about how you connect and when you connect and it might be different for each person. This also goes towards trust building. Develop long term relationships where people move with you and collaborate with you on multiple projects.

And obviously make sure you respond to what they say. So not tokenizing and not in name only, but actually being willing to change your content or your research to line up with what people say. Which can be really hard! If people with lived experience are not trained in intervention development or research, they may have ideas that don’t fit what we have the capacity to do. For example, you can’t change the items in a validated, reliable survey instrument. And yet, people with lived experience may look at it and say “well, I don’t like the way that question is phrased.” What are you going to do in that moment? If you can prioritize the thoughts and feedback from people with lived experience whenever you can, that goes a long way to show that you are taking what they have to say seriously. It’s a balancing act.

5. Any final comments or insights to share with my readers?

Here’s a puzzle that I haven’t yet solved for myself, and I would love other people’s thoughts about this. One of the challenges is that trainings go out of date and content can go out of date so quickly. And we don’t always have funding to update things. It’s not really attractive to funders to pay money to go back and update things. They want to do groundbreaking, novel, and innovative things. But [if you want to go back and revise] you’re going to want money to pay your people with lived experience, your advisory boards, or co-investigators to help you keep it updated. And I don’t quite know what the right solution to that is. Trying to create things that are evergreen or that are going to stay current as best as you can, even though we have shifting policies and sometimes shifting language and norms. That’s really tricky.

6. What is the best way for readers to connect with you if they’re interested in your work or these training programs?

Email is the best way to connect!