Interview between Speaker 1 (Meg) and Speaker 2 (Dr. T.C. Waisman)
Episode 65: Research that Centers Autistic Well-Being as Defined by Autistics
[Introductory note]
Hey, it’s Meg. If you’re an OT or a speech language pathologist who loves this podcast, you’ll enjoy my free training, ‘Four Essential Steps Towards A Strengths-based Approach To Autism’. This free training is where I bring together everything we are learning from our podcast guests and apply the lessons to our work as therapists. We focus on the concrete things that we can do in our actual work to ensure that it truly reflects our values. We even zoom out and talk in-depth about what we know now about autistic learning styles. Because when we can shift our perspective and truly consider how autistic kids think and learn, we can start generating more meaningful and effective ideas for our therapy sessions to help our clients find more joy, autonomy, connection, and acceptance in their lives. Visit learnplaythrive.com/masterclass/ to start learning right away.
[Introductory music]
Welcome to the Two Sides of the Spectrum Podcast. A place where we explore research, amplify autistic voices, and change the way we think about autism in life, and in our professional therapy practices. I’m Meg Proctor from learnplaythrive.com.
Meg:
Before we get started, a quick note on language. On this podcast, you’ll hear me and many of my guests use identity-affirming language. That means we say ‘autistic person’ rather than ‘person with autism’. What we’re hearing from the majority of autistic adults is that autism is a part of their identity that they don’t need to be separated from. Autism is not a disease, it’s a different way of thinking and learning. Join me in embracing the word ‘autistic’ to help reduce the stigma.
Welcome to Episode 65 with Dr. T.C. Waisman. I just nodded and grinned straight through this interview, and I think you will too. My conversation with Dr. Waisman goes into what has historically happened with research around autistic people and what changes we’re starting to see. Dr. Waisman also helps us break down what we as therapists on the ground should be looking for when we turn to the research to guide our work. And she guides us on what steps we can take towards truly changing systems.
Dr. T.C. Waisman is an indigenous Pacific South Asian and Asian non-binary person who was late diagnosed as autistic at 48-years-old in 2017. Since her diagnosis, T.C. co-founded Autistic Researchers Committee (ARC) and the International Society for Autism Research (INSAR), developed the Autism Training Academy offering online training about autism and neurodivergence, and became a founding editorial board member of the scientific journal, Autism in Adulthood. Additionally, Dr. Waisman was an inaugural member of the Autistic Researcher Review Board (ARRB) for the Autism Intervention Network on Physical Health (AIR-P) where she was tasked with reviewing grant applications to ensure research conducted through AIR-P ultimately aims to improve the health and well-being of autistic people as defined by autistic people. Most recently, T.C. was the primary author leading 14 international researchers on a study focused on autism and universal design training for faculty. T.C. is based in Vancouver, Canada, where she continues to speak, write, and guest lecturer at the crossroads of autism, disability rights, intersectionality, universal design, and equity in education and in the workplace. Here’s the interview with Dr. T.C. Waisman.
Hi, T.C.! Welcome to the podcast.
Dr. Waisman:
Hi, Meg. Great to be here.
Meg:
Yeah, I’m excited to have this conversation with you, and I’m really interested in your story. I want to start there with your story and how you became a researcher. I looked at your website and you title your ‘About Me’ section, ‘An Unlikely Story’. I’m wondering if you could share with us your unlikely story of becoming a researcher and how this intersected with discovering that you were autistic.
Dr. Waisman:
Well, it’s an interesting story and I didn’t know how to title it. So, I titled it that because I think it’s probably the most accurate way I can say it. So, the story of how I became an autism researcher, keynote speaker, and leadership coach is kind of an unusual one. I was one of those kids who went to four or five high schools; I was seen as a student who’s unworthy of time and care. So, you can imagine, I wasn’t very inspired to focus on my academics with those labels. And so, I really had difficulty in high school. I experienced a lot of trauma there. And what I didn’t know then but I know now, of course, is that I was autistic. So, as an autistic, black teen in the 80s, and 70s and 80s, you know, I fell through the healthcare, educational community, and family systems cracks.
And when I look back at my young self now, of course, I have such empathy for that little black teen, and my heart breaks for my little self, and for the many others who fall through that sort of diagnostic crack, if you will. But the one gift that those experiences gave me was the ability to hyperfocus on patterns of leadership, specifically in the high school environment. So, using my autistic sensibilities, I began to see patterns in formal and informal leadership structures. And then, those pattern recognition skills began to serve me in the work that I do and still do, actually, today. You know, I became a leadership coach in 1998, I completed my Master’s degree in Leadership and Training. And then, I eventually found out I was autistic just in 2017, at 48-years-old. And then, I went back and attained my Doctoral degree in Leadership, Policy, and Governance. So, really, it’s kind of an unusual, sneaky way of, you know, going through your journey. But voila, here I am! And I’m sure this is just one story amongst so many in the autism community.
Meg:
I love how you describe being able to hyperfocus on patterns of leadership. You know, often in the medical model, we pathologize hyperfocus, and we pathologize kids having strong interests or passions. And that’s such a good example of how, as Dr. Kristie Patten said in one of the very first episodes of the podcast, “We build our lives on our strengths.” And that’s exactly what you’re describing that you did.
Dr. Waisman:
Absolutely. And hyperfocus, in my perspective, in my view, and in the, you know, anecdotally, with the autistic people that I work with who are also researchers and activists, this is what got us here. This is why we do the things that we do. This is why we’re doctors, this is why we’re lawyers, you know, it’s our ability to hyper focus and to be able to see patterns, to recognize anomalies, that really allow us to be able to have a sense of what’s working, what’s not working. And it also makes us seem really critical. But really, we’re not being critical. We’re being innovative. And so, that’s another thing that people sort of look at and say, “Oh, that’s a deficit.” It’s actually really not.
Meg:
I really like that reframing of critical to innovative.
Dr. Waisman:
Yeah.
Meg:
Yeah, that’s lovely. Okay, I want to hear more about the work you do. Give us the rundown of your work at Adapt Coaching & Training. What do you do? And I really want to know what your favorite parts of your work are.
Dr. Waisman:
Well, you know, this is a great question. I’m really fortunate to be doing what I love to do at 54-years-old. I still get to coach leaders in large organizations. I now speak and train and research at the crossroads of autism, neurodivergence, intersectionality, disability justice, UD – universal design, higher education, and workplace inclusivity. And I have so many favorite parts of my work. So, you know, I’m trying to sort of hold it down. I really — one of the things is I love working with other Autistics on special projects. For example, I worked with a group of autistic researchers and advocates in the Autistic Researchers Review Board, where we reviewed grant applications to ensure that autistic voices are included in autism research, and to ensure that the aim of the research is to improve the health and well-being of autistic individuals as defined by us. So, I love that kind of a project.
I also love any kind of project that removes barriers, uplifts our voices as autistic intersectional people, creates opportunities. So, I’m currently working on a one-year project with a place called NorQuest College in Autism CanTech!, and we’ve been asked to create a framework for a cross-platform game engine to ensure accessibility for Autistics and neurodivergence. So, by removing intended and unintended barriers, you know, in terms of their gaming training, and their game sites, on their websites, and learner portals, and educator portals, we’re actually making sure that their products are not only neurodivergent enabled, we’re making it accessible for as many users as possible. So, this makes me so happy.
Meg:
This is so cool. We’ve talked about this before on the podcast, the idea of universal design for all neurotypes being better for everyone. In the same way that I think the example of the, the typical example used here, right, is moms with strollers or parents with strollers using curb cuts that wheelchair users fought so hard for. Having accessibility options is so beneficial and it’s really exciting to see this applied to folks of different neurotypes. I love that. I’m really, really very interested and excited in what you said about research around autistic folks. Because a lot of therapists who listen to this podcast are really fighting against models of quote-unquote ‘best practice’ that center research, evidence-based practice, but it’s evidence that doesn’t hold autistic well-being as an important outcome.
And then, we get asked questions like, “Oh, what’s the evidence for using a more affirming model?” I get ridiculous questions like, “What’s your evidence that we shouldn’t use hand-over-hand assistance to remove an autistic child’s body for them?” Because it violates their autonomy. And I’m like, the evidence is the code of ethics and your internal moral compass. Like, God.
Dr. Waisman:
Hopefully. Hopefully the internal moral compass.
Meg:
Yeah. I was like, you know, basic principles like autonomy and not doing harm to people. But I’m also really interested in what’s happening in the research world. Can you talk a little bit more about how the research you’re doing is different than what’s out there? And what research you would like to see happening?
Dr. Waisman:
Oh, absolutely. And thanks for this question. I might take, I might take a little bit of time, because this is, this is a very passionate point for me. So, I’m going to actually just start with an example. I just, I’m just thinking about this now. I was lucky enough to be invited to speak recently at the Fermilab lecture series. Now, Fermilab, for those of you who don’t know, is America’s particle physics and accelerator laboratory. Now, the last time I checked, I have no background in particle physics. But this lovely group invited me to speak about the effects that autistic researchers are having on autism research; and then, on other research fields. This is amazing. In short, there is a revolution taking place in research right now. And autistic researchers are at the head of that. We’re conducting research from within our community, There’s more and more of us graduating, more and more of us going into autism research, and hyperfocusing on our own needs. And so, we are no longer accepting that research about our culture, or any culture for that matter, should be carried out from a so-called objective perspective, from outside of the culture.
We know that there’s no such thing as objectivity. And that notion of objectivity is both archaic, and in my mind, is very harmful. It privileges the researchers who do and infantilizes and monoliths the perspectives from within the culture. And what I mean by monolith is that, you know, in autism research in particular, it means showcasing only one perspective. Male, white, you know, and to the exclusion of all others; black, you know, indigenous, LGBTQ, you know. So, when we’re talking about that kind of objectivity in research, I think it’s complete nonsense, if I can be frank. Also, we maintain — those of us who are autistic researchers — most of us maintain that autism research should aim to support and improve our health and well-being across our lifespan, but as we define it. So, you know, research is having a revolutionary moment. And we’re having that moment in the evidence-based models we use.
So, there’s a woman named Sandra Thom-Jones, a person named Sandra Thom-Jones, is an artistic and Pro Vice-Chancellor of Research Impact at Australian Catholic University. And they just published a paper about measuring the wrong thing the right way, I think that’s actually the title of the paper. And in this paper, they bring a much-needed focus on the fact that current autism research often uses scientific instruments that are created by non-Autistics mainly, and that these instruments are not consistent with our lived experiences of autism. And yet — here’s the catch — the research results that are being used as instruments to inform policy, practices for therapists, for example, and community understanding. So, you know, those of us who are using — therapists included — evidence-based research to inform your practice have to know that often these researches that happen before us, you know, were not necessarily informed by those of us from within the community.
So, Sandra argues that instruments and methodologies used in autism research should actually be informed by and where possible developed by Autistics, because who knows our experiences better than us? We know better than anyone what’s important to research and our community, and we know how to get up and go about garnering the kind of information that’s needed. We have the respect within our community; we have the community understanding. So, you know, and we have the desire to improve the lives of the people in our community. So, you know, I feel like this is an excellent question that therapists keep asking. And so, I want people who asked for where’s the evidence, look for evidence-based research that is informed by Autistics. Make sure you look at that. And for our part, we autistic researchers and activists are really working hard to lead the change in this area. And, you know, so I hope that you’ll keep checking back, you’ll keep reading, you’ll keep asking the questions — where are the autistic voices here?
Meg:
I’m just nodding. I’m just nodding so much as you talk, thinking about my training, being trained by non-Autistics about how to support autistic people with a, you know, a token, phenomenology class and maybe one autistic person, right. This token inclusion of autistic voices, but not guided by that. We’re guided by, as you said, things that were not developed by autistic people. And you said, research should aim to improve our health and well-being as we define it.
Dr. Waisman:
Absolutely.
Meg:
Which really takes us back to the double empathy problem, right?
Dr. Waisman:
Yes.
Meg:
How arrogant would it be for neurotypicals to say, “Because of my training, because of my degree,” whatever it is, I should be able to decide what a good outcome is, what matters —
Dr. Waisman:
Exactly.
Meg:
What we should be measuring for the autistic community. Well, we know that neurotypicals aren’t good at taking the autistic perspective. And I love that you gave us this question. PhD students, listen up. I know they’re here listening to this podcast. I love that you’re giving us sort of this challenge to look at the research and say, is the outcome to improve the health and well-being of autistic people as defined by autistic people? Or are we measuring the wrong thing the right way? That is so awesome.
Dr. Waisman:
Yes, exactly. And I just want to throw in there that, you know, it’s so important not only to understand that we should be involved in the research, creating the kinds of measures that would create those kinds of outcomes. But also, you know, we have a perspective that needs, that is much broader than what current research and past research has allowed us to have. We are intersectional in so many ways. We have so many co-occurring medical conditions, and so many cultures, and ethnicities, and gender expressions. So, we know that from inside the community, so we will look for those things. And those are things that get siloed in other people’s research.
Meg:
Absolutely. I really appreciate your focus on that, and you’re bringing us back to that. It is such a process and not as simple. I was recently talking to autistic SLP, Rachel Dorsey, during a summit. And she said, you know, neurodiversity-affirming practice isn’t like a list of rules and guidelines. It’s just like cultural responsiveness. It’s an ongoing process of learning and reflecting, but there’s no real black and white, one way.
Dr. Waisman:
That’s right.
Meg:
Yeah. Okay, I want to circle back to this idea of what it means to be doing well. In your work, you use the word ‘thriving’ a lot. And there’s something about that that speaks to a paradigm shift, especially for populations that have been prevented from thriving historically and in the present because of all of the systems of power, oppression, white supremacy, all of these things. Can you share why you use the word ‘thriving’? And what that can look like for autistic folks?
Dr. Waisman:
Sure. You know, I’m gonna be very honest and blunt as I always am. I talk about thriving because I’m quite done with the word ‘awareness’. Autism Awareness Day, Week, Month; we’ve moved past awareness. We’re here. We’re 1 in 44, you know, being autistic, even more of us who are neurodivergent. So, I feel like it’s time to look at ways that we can thrive. What are the outcomes we can have in research, you know, what kinds of things can we do so that we can remove barriers and thrive in our environments, in the systems that we negotiate every day, such as health care, and education, and in our family system? So, for me, I really believe that it’s time to have the discussion about thriving in our individual lives as Autistics, and intersectional Autistics at that.
Meg:
I love that. Yeah, we’re over awareness here too. And autistic thriving? Yes. I’ve had a number of people in the podcast say that we don’t know what an untraumatized autistic person looks like.
Dr. Waisman:
Oh, yeah. I don’t. Yeah, that’s a very good point. I don’t know. I haven’t, you know, I’ve had maybe some — maybe I’ve met somebody but, you know, but I didn’t know that about them. But my personal experiences have been about trauma. And the people that I’ve worked with, especially other autistic researchers, you know, we’ve come to where we’ve come to because we’ve lived through trauma, and not because we had gentle upbringings. So, yeah, I think thriving is important.
Meg:
Thriving is important. And even if we don’t know what that looks like, it’s the path that we want to be creating. And I think this really speaks to the core values of folks who listen to this podcast, a lot of whom are OT’s and SLP’s. But I don’t think very many of us became therapists without really wanting to help people thrive. I think that’s our real goal. I think that’s the thing most of us care about. We get sidetracked with wanting to prove our own competency, with wanting to make sure things are billable to insurance, with not really knowing what to do with poor training; we get sidetracked. But it’s so nice to come back to this really deeply meaningful goal of ‘I want to help people thrive, whatever that looks like for them’.
Dr. Waisman:
Yeah. And to be fair, we all get sidetracked. We all, you know, we get done in the sort of weeds and rushes. In research, I can be you know, really looking at statistics rather than looking at people. So, you know, when we’re talking about OT’s and therapists and SLP’s, you know, we’re in the same boat. What we do matters. And so, it’s the bigger picture. We’re having the same vision, and how we get there — even if it’s going through the weeds sometimes, staying in the weeds for a while — but we’ll get there. But as long as we’re being each other’s allies and really working towards better outcomes for autistic people.
Meg:
I love that. We have our cameras off in this interview. And I just want to tell you, T.C., I’m just grinning at you as you’re saying these things. I love this. I was looking through some of your work, and you’ve shared so many concrete ways to make places like post-secondary campuses more inclusive. Can you share some of those ideas with us and also talk about what you found to be the biggest obstacles or barriers despite having such a clear path laid out?
Dr. Waisman:
Yeah, that’s — okay, that’s great. I’m gonna try and make a few points and not too many, you know, inclusivity, to me, whether it’s in the workplace or in the university, it’s most successful when it happens everywhere at once. So, decision makers need to be educated about the importance of inclusivity, not just on paper, but I want decision makers to hear the stories from Autistics from their own mouths, on campuses and in the workplace. That also, we need to be at the decision-making table. Every decision-making table needs to reflect the population that they serve. Our voices need to be there right from the beginning of any decision that needs to be made that will affect us. Faculty members, administrators, staff also need to be trained about autism and neurodivergence. You know, they need to know what an ally, being an ally looks like within their own bespoke organization, and how teams are much stronger with differences. So, they need to be educated about that or reeducated about that.
Also, any kind of discussion, campaigns, trainings need to be ongoing on campuses and within organizations. Because long-lasting impact really happens when we have ongoing campaigns, when we have ongoing information, when the conversation continues. That’s where real change happens. That’s where attitudes and biases and prejudices see the light of day and are able to come out, and people get to talk about the, you know, how they weren’t exposed to people who are ND, and what they can learn, and how we can work together. Another one is grassroots call for changes in the workplace. When people — and we talked about this a little bit earlier — you know, we’re not necessarily complaining when we’re saying, “Listen, here’s an oddity. Here’s something that I’m seeing that we need to fix on a campus,” or again, in a work environment. We know what barriers there are for our success. And we’re trying to dismantle that. So, we’re trying to help create a better environment for all people and trying to create strength for the team. It’s just, we need people to be open-minded and see this not as a deficit but as a positive.
And in that way, you know, I really want to say, probably my last point here, is that accessibility is really about innovation. And you talked about the curb cut, how, you know, we use the stroller to go down the curb cut. Well, we know research has been done about curb cuts. Curb cuts were created for the disability community, for those in wheelchairs and those walking with canes and with crutches. But we know through research now that the majority of users are not people who are physically disabled. There are people on bicycles, roller bags, strollers, using delivery dollies, unicycles, and even people who walk prefer a gentle slope. So, when we use — when we create things like curb cuts, when we create things in campuses, on campuses, in educational profiles, in classrooms, in organizations, when we design for Autistics, we’re really designing for everybody and everybody gets access in the way that they need to without needing to have to say, “I need an accommodation. No, I’m gonna go get a diagnosis.” None of that is important. What we need to do is to be fair and equitable to everybody.
Meg:
That’s such a good point. I’m trying to think of an accommodation that doesn’t sound wonderful to me, you know, just selfishly sitting here. I’m like, participate through Zoom chat. Yes, please. Turn of the fluorescent lights, yeah. Low fragrance, I’m in. I mean, it all sounds great.
Dr. Waisman:
It’s really hard to challenge the old model, you know, it’s really hard to challenge the model of inaccessibility and say, “But you know what, inaccessibility is great, because of these reasons.” I mean, it’s inaccessible.
Meg:
[Laughs] I’m a defender of inaccessible work environment.
Dr. Waisman:
[Laughs] I think just two of us out of 40 of us should be able to succeed in this environment. That doesn’t work, you know?
Meg:
I know. You’re right. You’re right, which really says something, though, that no one can really argue for it, except maybe the person doing the budget, perhaps. But it’s still so hard to change things. And we get question after question from therapists — and I love this question — but it’s, “How do I change the system?” You know, therapists are learning about neurodiversity-affirming models of practice, but working in settings that are steeped in behaviorism and old ideas, and they don’t just want to do things differently with their clients. Sometimes they even can’t, because of the rules of the place that they’re working in. They want to know like, “Meg, what do I do to change everything around me?” Do you have any advice to these folks on the ground to want to try and make change beyond their work in their workplaces and in their communities?
Dr. Waisman:
Yeah, absolutely. First, I just want to thank all those autistic and non-autistic therapists out there working to make changes from inside the system. I know it’s difficult, and I know that sometimes policies and governance really holds you back. But just being there and having a voice and even speaking, you know, in a low voice, anything, a grassroots movement that you’re doing as an individual is making a difference. So, you know, if you’re not being seen, I want to know that you’re being seen. So, I want to start with that. But, you know, also, these systems are made up of us, right. We’re the people. We’re the spokes in the wheel of the systems that are created that affect us. So, it really lands on us to make those small and big changes that are necessary to create a shift. So, the first thing I’d say is, listen to Autistics. Listen, with open ears and an open heart, not with deficit thinking. Know that Autistics are — we’re good at pattern recognition, we’re good at recognizing when something is or isn’t working. We’re not trying to be complaining here. We’re trying to innovate. So, you know, those of us who are — and we know, historically, you know, those of us who are autistic are probably the first people in hunter and gatherer movements who actually started to notice that, wow, every time we get here in this time of year, these sorts of foods grow here. So, what if I actually planted it and came back next year? So, we were innovative. We, you know, we moved from hunter gatherers. You know, we’re not saying that they were only autistic, but likely they had autistic traits. And we were able to see a pattern and then create something that created stability, and we didn’t have to move as much. We could stay and create culture and all of that fun stuff. But I digress.
You know, so that’s one of the things. Listen to us, please. We’re just trying to innovate. Another one you already brought up, Meg, and it’s the double empathy thing. You know, if you believe an autistic person doesn’t understand you or is difficult to work with, then flip the script. Ask yourself if perhaps you are not necessarily understanding our perspective, or if you might be difficult for Autistics to work with because you’re not understanding us. So, there’s double empathy, we have to have empathy both ways.
You know, another thing I always ask is to be educated about Autistics and ND’s, and be educated by us, because no one else is going to speak for us in the way that we speak for ourselves and we know ourselves. And I tell my organizational clients, “Imagine bringing someone in to talk about the black experience, and that person is not black.” I mean, how well do you think that’s gonna go over in this day and age? It’s not gonna go over, you know. So, this has to be applied to Autistics as well. We come from all intersections of life. We come from all ethnic groups. We have many co-occurring medical conditions, you know, many communication styles. And we have voices, and we’re here to represent ourselves. So, come to us directly. And the last one, I think, is to reach out to us for advice, for resources, for tools. Many of us hyperfocus on all things autism. So, whether we’re bloggers, podcast people, activist, mothers, researchers, we’re out here doing this work. We are the resource that you need, so we can help. You just have to reach out in a respectful and open-hearted manner.
Meg:
That has absolutely been my experience. Everything that I’ve learned, really, about being autistic, I’ve learned from autistic people. And I appreciate you saying that people should use their voices, even if they’re using them very quietly.
Dr. Waisman:
Absolutely.
Meg:
We all work differently, right. I have a podcast. But you know what I don’t have right now? I don’t have a therapy practice. Like, I’m just interviewing people. So, I’m reaching more people. But I’m not on the ground doing the hard work in the neighborhood school with the flip charts and the seclusion room, right. So, I love what you said that the work people are doing matters. And wherever they can start is a great place to start. And I also just want to reemphasize that you said we can’t do this work without talking about the double empathy problem. I think that that’s softening a little bit to present the double empathy problem research. It kind of takes the, “Hey, we should all already know this,” edge off, to say, “Hey, here’s an experience and an opportunity to learn something that none of us learns naturally, and go at things a different way.”
Dr. Waisman:
Yeah, exactly.
Meg:
Yeah. Thank you for that. When people ask me this question, I always talk about having people like you speak, right. Like, who is speaking at the staff meeting? Who is speaking at the conference? Like, are they having autistic people give the trainings out in front of people? And if not, there’s the opportunity, just like you said. And another thing that you’ve talked about before is that one way to change systems is to intentionally include neurodivergent people and neurodivergent culture in DEI — so, diversity, equity and inclusion efforts. This is an interesting timing to be having this conversation. I know some of our professional organizations are looking at how they require DEI courses, or whether they should, or how they can. It’s kind of on the table right now. So, can you elaborate on this a little bit?
Dr. Waisman:
Yeah. I mean, as you can imagine, you know, because I’m black, indigenous Pacific, LGBTQ, autistic. I mean, you know, I get a lot of calls for DEI training. And so, this question comes up all the time, you know, and the understanding that most organizations have is that the diversity part is really about ethnicity and cultural diversity, and maybe some physical disability. But really, diversity needs to include the social justice meaning of neurodiversity. So, to me, neurodiversity in that sense represents those neurodivergence who are equity seeking, experience systemic barriers to accessing opportunities across many systems that impact us. So, intersectional people as well, you know. And we may make assumptions that diversity and inclusivity really means just that — culture, age, ethnicity, gender expression. But if we don’t explicitly state neurodiversity, it’s often overlooked or underrepresented in discussions and in decisions and practices. So, I feel like it’s important, you know, to ensure that conversations about diversity and inclusion includes representations of neurologically diverse people from all walks of life. And I often, when I write the JEDI — justice, equity, diversity and inclusivity — I will say JEDI+ or, you know, I will say in brackets before diversity, (neuro)diversity, just so that it’s explicitly stated to remember that there are also neurological differences.
Meg:
That makes a lot of sense, because we’re asking to take being autistic out of the medical model of it as a disorder and into the social model of being autistic as a neurotype with its own culture. And when you put it there, this makes a lot of sense. Like, yes, of course. Yes, of course, that should be included.
Dr. Waisman:
We’re doing that in research as well. So, we’re, you know, even in medical research about autism, you know, we’re really — those of us who are activists on the inside who are researchers — are really pressuring… Not pressuring. Okay, sure, pressure. Are really influencing, you know, to say, listen, you can use the medical terminology when it has to do with the medical aspects of it, but also you need to be respectful and use the social terminology. And when we’re talking about neurodiversity, you know, you need to be able to understand and talk about it outside of the silos, so the real diversity of it all. I’m a little bit passionate about this, so I’ll just stop.
Meg:
I love it. It’s really exciting to hear you talk about the changes that folks are pushing for in research, because often people will point to the research is the reason the changes aren’t happening on the ground. So, I love this. People are coming from all directions. Let’s do this. Let’s get the tidal wave going. Is there anything else that you’d like our listeners to gain from this conversation or any key points you want to bring us back to?
Dr. Waisman:
Yeah, and I just want to start with the point that you just made actually, you know, about the sort of tidal wave and the revolution that’s happening. You know, I was part of the International Society for Autism Research, INSAR, one of the largest societies out there for autism researchers to gather. We gather all around the world once a year. And so, myself and Patrick Dwyer co-founded the very first Autistic Researchers Committee within InSAR. And so, we are the Autistic Researchers Committee who are researching autism, who are influencing other people within that large organization. So, we’re there and research is changing. And so, I really encourage people to read Autism in Adulthood journal, to read other — to read articles written by autistic researchers. We’re making strides every single day republishing. And so, really, you know, expand your horizons there. Also, continue to center our intersectional autistic voices and advocate for us to be part of the decision-making process, especially with decisions that affect us. Learn about double empathy; read about that. That’s Damian Milton’s work. Also, in discussions about neurodiversity, don’t forget that the voices of those who have been minoritized and who are equity seeking. Don’t sort of look at it in a silo, and look for research done by us for us, and reach out to our community for evidence-based models and best practices that come from within our community.
Meg:
That is so exciting. I will link to some of those resources in the show notes at learnplaythrive.com/podcast. And I think most listeners have heard us talk about the double empathy problem over and over, but if folks want to go deeper, Dr. Damian Milton who conceptualized this was the guest on Episode 2 of the podcast, I think, one of the very first episodes. So, folks can go back and listen to that interview with him as well and go even deeper into that topic. So, tell me, T.C., what are you working on now? And where can we find you online?
Dr. Waisman:
Well, I’m very excited because I’m currently preparing several keynote speeches for organizations across North America and around the world, on autism and intersectionality, supporting autistic learners, and of course, diversity in the organizational setting. And by diversity, I mean neurodiversity. And I’m guest lecturing as a graduate psychology — for a graduate psychology class, as well. And I’m currently writing a commencement speech for the 2023 graduating cohorts at three colleges across three provinces in Canada. So, I’m super excited. You know, the work is really unique and bespoke each time, which is perfect for my kind of corner of the autism constellation. I’m doing very exciting things and open to exciting things as well. And you can find me at — I’ve got two websites that I work at it. One is www.autismtraining.academy, and one is www.adaptcoach.com. And both have tons of resources, free courses, you know, 20-minute interactive introductions to autism; lots and lots of stuff on there as well.
Meg:
Thank you so much for your time today and for all of the work that you’re doing.
Dr. Waisman:
Thank you so much, Meg, for having us. Thank you — or us, I mean, me. But also, you know, I just really want to thank you for having such a great platform. You know, having — just hearing about Damian Milton, I’m gonna go back and listen to that podcast. I think that this is a great place for us to be able to have these discussions and to be able to forward the movement and the understanding of autism across all fields. So, thank you. Thank you. Thank you, Meg.
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Thanks for listening to the Two Sides of the Spectrum podcast. Visit learnplaythrive.com/podcast/ for show notes, a transcript of the episode, and more. And if you learned something today, please share the episode with a friend or post it on your social media pages. Join me next time, where we will keep diving deep into autism.
