Editor's note: This text-based course is a transcript of the Reframing Autism From A Neurodiversity-Affirming Perspective Podcast, presented by Katherine McGinley, OTDS; Dennis Cleary, MS, OTD, OTR/L, FAOTA.
- After this course, participants will be able to:
- define the term neurodiversity.
- analyze what autistic communication and sensory processing look like from a neurodiversity-affirming perspective.
- evaluate the importance of language and its limitations to practice.
Dennis: Hello, everyone, and welcome. My name is Dennis Cleary. I'm a senior researcher and occupational therapist at Cincinnati Children's Hospital Medical Center. I am happy to be joined today by Katherine McGinley, an occupational therapy doctoral student. She will be an occupational therapist shortly, maybe by the time you are listening to this. Thanks so much for joining us.
Katherine: Thank you so much for having me.
Dennis: Absolutely. The background for how we met and why we are having this discussion is that we had an earlier podcast where we discussed how important it was for us as occupational therapists to listen to the neurodiverse community. That evening I was on an AOTA call, and lo and behold, you were on that call. You are a big supporter of neurodiversity and neurodiversity-affirming practice. Could you tell us some background about neurodiversity and what neurodiversity-affirming practices are?
Katherine: Neurodiversity is a term that was coined in the 1990s by Judy Singer. It is a play-off of the term biodiversity, referring to the normal variation in human brains. This concept includes people with anxiety, ADHD, autism, and many others. This concept suggests that no normal or abnormal brain exists, and we should embrace the differences.
Neurodiversity-affirming practice flips the traditional model of care. Instead, it recognizes all individuals as valuable, just the way they are. Treatment or intervention looks more like affirming who people are and increasing their quality of life rather than attempting to fit them into a standard mold. This practice is most commonly talked about and used for autistic people, which is excellent, but neurodiversity-affirming methods and approaches recognize all brains as valid. Thus, neurodiversity-affirming care is appropriate for everyone.
Dennis: Could you tell me a little about how you got into autism practice and why neurodiversity-affirming practices are so important to you?
Katherine: I am an autistic adult with autistic family members and friends. Although autistic people can enter any field, many of us want to work with other autistic people. Currently, I am doing my capstone project on assisting practitioners in understanding how to use neurodiversity-affirming practices with autistic people who exhibit self-harm or aggressive behaviors.
Dennis: Tell us where you are in school and your capstone if you would not mind.
Katherine: I am doing my doctorate at Huntington University, obviously in occupational therapy. I am in my final semester, completing my capstone. I have been lucky enough to partner with Dr. Jessica Kramer, who I believe you know, to do qualitative research.
Dennis: Wonderful. We met when you were on a panel with Dr. Kramer. You had such a unique voice that is important for everyone to hear. I hope this talk will count toward your capstone hours.
Katherine: I plan to count it.
Dennis: I noticed you say autistic person rather than a person with autism. We have had person-first language drilled into us, but is there a reason you have moved away from person-first language?
Katherine: I am a big believer in the idea of nothing about us without us; many of us have heard this disability mantra. This applies to the autistic and disabled communities, especially regarding language and what practices we should use. We should consult the communities that we serve. In general, the autistic community prefers identity-first language, which I use. I do want to give a general caveat, though, that individuals may prefer different types of language, and you should always respect what an individual chooses.
Dennis: I was at a conference last summer, and someone was using people-first language. An autistic individual in the audience said, "I prefer..." Language is changing, and it can be challenging to get it right. Any recommendations on how we can stay up on some of these changes as professionals who are not part of every community we are trying to serve?
Katherine: None of us are perfect, and that is okay. I have provided some resources on language, but I think the best response we can have is to be open to criticism. None of us know everything. When someone from a community or someone who advocates with a community tells you what language is most appropriate or preferred, we need to do our best to make the shift.
Dennis: Can you talk about how these language changes relate to changes in practice?
Katherine: Honestly, I do not think it is as essential as we sometimes make it out to be. For some reason, when discussing neurodiversity, people get most stuck on how to shift their language. Language is essential and can help us reframe our mindset and practice, but it is the least important part of a shift in practice. It is the tip of the iceberg.
One example I have is the term special education. The term special education is widely disavowed in the disability community. It is one of the few terms that most segments of the disability community agree should not be used anymore. People with Down syndrome have been some of the most prominent advocates against this term. We can easily make this shift from "special education programs" to disability support services or student support services. However, if all we do is switch the name to disability support services, we have entirely failed to understand the point. We must move away from programs focused on making disabled people more typical. If we are not making actual changes to our programs, we have not truly made the shift and have only done surface-level changes.
Dennis: Can you talk about our interest in making people more "typical?" Is this something you have seen just as a student or how we, as occupational therapists, practice?
Katherine: Unfortunately, it is something that I still see quite a lot. We may have the best intentions. One example is "deficits" in social communication. Sometimes we think we are helping autistic people make friends or fit in normally. However, the autistic community has told us that this is not what they want.
Another example is eye contact. Eye contact is often perceived as incredibly painful or uncomfortable to autistic people. Many autistic people report that they cannot listen to a conversation if they are required to make eye contact. So why do we require it? It is similar to the whole-body listening idea. You can be listening while looking out the window, or you can be listening while moving around. Sometimes, we think we should require something, but we do not think about why we need that.
The second part is stimming. Depending on where you work, you might have been taught that stimming is something that we need to stop. I was talking to a practitioner based out of Minnesota who was told that when his autistic kid flaps his hands due to excitement, he should drop 40 ping pong balls on the ground to interrupt the activity and have the kid pick them up as a way to stop and interrupt the stim. I am not sure where this thinking comes from or the purpose.
There is nothing wrong with stimming. It is self-regulatory to many autistic people. We all stim to some extent.
Dennis: I am currently holding my stim object.
Katherine: There is nothing wrong with that.
Dennis: Our audience cannot see me, but I am holding some tape right now. This is not my typical stim device, but I hold it as we speak.
Katherine: Exactly, there is no reason to stop it unless, of course, it is harming the individual.
Dennis: It is interesting to think about our differences in working with children as opposed to adults. I tend to work with folks with autism who also have an intellectual disability, and many people with autism do not have an intellectual disability. But, it becomes a question about who the client is.
Katherine: I like framing who the client is. As occupational therapists, we get caught up in helping the family or the school, and those are absolutely people with whom we should collaborate. Collaboration with families and parents is essential to our jobs, but the autistic student or child is our client. It is important to ensure that we listen to that individual in the community rather than allowing parents' views to shift our practice.
Dennis: I do not know how many IEPs you have had to sit through in your student era, but in a lot of the IEPs, or even other team meetings that I have been part of with both children and with adults, occupational therapy brings a different voice. Everyone says that they are client-centered, but the autistic person's voice must be central to the decisions that are being made.
Katherine: Absolutely. I think this is especially true when some autistic kids are not able to advocate for a variety of reasons. As OTs, we think we know best. As you said, we are uniquely positioned to advocate with the student. However, I see us not always doing that due to our biases. I see this a lot with social skills, where practitioners think it is in the kid's best interest to teach social skills for being engaged with friends and activities.
The autistic community is saying, "Here's how we make friends," or, "Here's how we can do this in a way that affirms our identities." We need to be truly person-centered. Also, we need to listen to the community of adult autistic people, many of whom have co-occurring intellectual disabilities, are non-speaking, are people of color, or are trans individuals. All these voices are critical. Although they are not the individual you are working with, they are the best possible approximation.
Dennis: I like that you say advocate with instead of advocate for. We want that person's voice, whether verbal or non-verbal, to be a part of those decisions. We often think of autistic communication as a core deficit. How do we look at that from a strengths-based perspective?
Katherine: One of my favorite newer theories is the Double Empathy Problem by Dr. Damian Milton. This theory came out in direct opposition to Simon Baron-Cohen's Mind Blindness Theory. Simon Baron-Cohen's theory says that autistic people struggle with empathy and the social part of communication because they cannot cognitively understand what the other person is feeling.
Dr. Damian Milton twists this a little bit, stating that autistic people may have difficulty cognitively understanding what non-autistic people are feeling in the moment, which impacts their ability to communicate. However, non-autistic people have just as much trouble understanding what autistic people are feeling and therefore are missing a lot of their communication cues.
This is a very new area of research, but the research has been promising. There is a famous study where autistic people and non-autistic people played a game of telephone, and the line of autistic people scored very similarly to the line of non-autistic people. The problem arose when the line switched between autistic and non-autistic people. The communication completely fell apart.
When we look at autistic communication from a strengths-based perspective, we need to recognize that autistic people tend to communicate and understand each other fairly well. The problem arises when communication between the autistic and the non-autistic person happens.
The other point that I want to make with strengths-based communication is that all communication is valid. Communication through behaviors and non-speaking or non-verbal communication like body language or echolalia are all valid forms of communication that we should respect. It is never okay to ignore a type of communication.
Dennis: As practitioners, if we want to help and move the ownership for change away from the autistic individual, what are some changes that we can make?
Katherine: When we reframe the conversation, we can start thinking about it from an equal perspective where we are considering the autistic person as an equal partner in conversation and not someone that has inherent deficits. We are thinking about how we can communicate with this individual in the way that benefits us both?
Autistic people are constantly making changes to their communication style to fit into the world constantly. In a relationship with someone, whether a friendship, partnership, a child and parent, or a client and OT practitioner, we constantly change our communication to benefit the other person, and they make changes for us. This is all the autistic community is asking. They are not asking for all of the ownership to be on the non-autistic person, just for it to be more of an even split than it currently is.
One simple thing non-autistic people can do to help autistic people is think about the hidden messages in their language and communication. Non-autistic people sometimes do not even realize that they do this.
My favorite example is the phrase "take out the garbage." Non-autistic people, in an effort to be polite, may say something like, "Wow, the garbage is getting full." What they might mean is, "Take out the garbage, please." The autistic person probably heard, "Wow, the garbage is getting full." They then think, "You're right." The non-autistic person may get frustrated and think, "Why aren't they listening to me? I told them to take out the garbage." To the autistic person, you did not tell them to take out the garbage. Simple changes like this can help.
Dennis: We need to be more direct.
Katherine: Yes, it is definitely more direct, but they still may miss the hidden message.
Dennis: I sometimes miss my wife's hidden messages.
Dennis: I wonder about racial unrest over the last several years. I have Black friends that say it is not "my responsibility for you to learn about race." They think it is my responsibility to learn about people different from me. As a white male, I am trying to take responsibility by reading more, watching more videos, completing training, and intentionally following certain people on Twitter. I am trying to be more exposed to differences of opinion other than mine. Is that what you are encouraging us to do, to learn about folks that come from neurodiverse backgrounds?
Katherine: Yeah, I think it is similar and interrelated. It is important to recognize the important distinction that you made there between expecting people to educate you on a topic and listening to people that are part of a community. We want to listen to members about their community, whether it is people of color, autistic people, disabled, or queer people. However, it is unfair to expect our friends, family members, and patients to educate us. It is not their job. They are just living their life. There are plenty of free and paid resources. We still need to listen to the community's voices, which are the most important.
Dennis: As a researcher, we write folks with various types of disabilities into the grants as content experts. For many years, researchers have taken advantage of people with disabilities that are part of focus groups or whatnot but do not have much say in what the research is or help to interpret the research information. Many federal grants are helping to encourage us to include the minds and the voices of people with disabilities as part of that. The federal government is in agreement with you right now.
Katherine: I am glad.
Dennis: Can you talk a little bit about how anti-racist practices and pro-queer practices relate to neurodiversity-affirming practice?
Katherine: As a white person, I am not here to talk too much about anti-racist practices, but I do think it is essential to mention that both anti-racist practices and pro-queer practices are essential to a neurodiversity-affirming practice. A neurodiversity-affirming practice relies on respecting people's identities and people's brains. Therefore, we need to actively work to be anti-racist and pro-queer. A huge part of this is listening to intersectional voices (Black, autistic, and trans-autistic individuals) and then making the changes. We need to move towards supporting people with multiple marginalized identities.
Dennis: Studies tend to use subjects from white middle, upper-middle-class backgrounds because they have access to a higher level of service. Researchers are working to have a more diverse pool of people from which to learn and support. Most occupational therapy practitioners understand that autistic people's interests are important to them and can be used in OT sessions. When you are thinking about interests from a neurodiversity-affirming lens, do you think there are any changes that we need to make?
Katherine: There are three ways that I have seen occupational therapists use interests in their sessions, and some are definitely better than others. The first option would be using interests as motivation. I see this most commonly with OTs who have been behaviorists or follow a more behavioral principle. The basic idea behind it is you identify their interest, and you use that interest to get them to do the activity. For example, if I am working on handwriting and the child's special interest is dinosaurs, they may write for five minutes, and then I give them the dinosaur. This is not a neurodiversity-affirming approach, as the autistic community has talked about how important their interests are to them. By leveraging them like this, it can be hurtful. When non-autistic practitioners look at interests, especially autistic interests, they come from their perspective, and they miss how important the interests are. Engaging with my special interests and info dumping information about it is one of the most profoundly joyful experiences of my life. As such, we need to stop removing interests.
The second option that I see is leveraging interests. This is much better than the first option; however, it is not the most effective method. I think we can do better as practitioners. I see this a lot with handwriting specifically. The practitioner may take a photo of a dinosaur and put it on a handwriting activity. They are incorporating their interest, but they are missing the reason that the autistic person is interested in dinosaurs. For this particular autistic person, it might be that they love info dumping and collecting information. Other autistic people may like the intonation that the dinosaur makes with their vocalizations and love copying that.
The first step towards a truly affirming practice is identifying why that interest is so significant and what joy they get out of that interest. Then, we can come up with activities that allow them to engage with that interest in a way that is meaningful to them. If a child enjoys the info dumping and collecting, I may suggest that they write down their dinosaur facts. "I know sometimes you get nervous when you're talking to strangers. By writing down the facts, you will not forget any of them." This allows authentic participation with the interest. It also works on handwriting for a little bit.
Dennis: It is a win-win.
Dennis: Hopefully, it is not manipulative.
Dennis: We have to be careful about that. Regarding respecting people's autonomy, it should be centered on the child and child-directed. This is an essential thing for us to always keep in mind. In terms of leveraging, it is pretty clear that withholding a preferred interest or activity is a bit manipulative. Can you talk a bit more about the difference between that leveraging that you spoke of and authentic engagement and why that is so important?
Katherine: The core difference is that leveraging the interest is the manipulation you were talking about. You want them to participate in your task, so you will use their interest to get them to participate versus true authentic engagement that considers what the child wants.
There is a tv show about an adult autistic young man. Although the TV show has many problems, it gives a fantastic example of using special interests to grow skills. For instance, he is interested in penguins and has been hypersensitive to sensory stimuli his whole life. As an adult, he wants to go to Antarctica in the TV show. He pushes himself out of his comfort zone to gain skills that he thinks would be valuable for the trip. My point in sharing that story is that autistic people's special interests, intense and passionate (like all of us), can help them to gain skills and center their motivations. Is handwriting important to the kid?
Dennis: That is a great question. Hopefully, the child can answer that, and you do not have to answer that for them. I think a lot of occupational therapy is helping people step outside of what they feel they can do. It is not that we are motivating them to do something or not to do something, but it is helping them want to make the next step. Ultimately, it is up to them to make that next step. We are here to provide the support they need to get there.
Katherine: It relies more on that intrinsic interest. We sometimes rely on extrinsic rewards like food or whatever it is at that moment. This is unnecessary because autistic people have such intense interests and intrinsic motivation for things.
Dennis: I help folks typically with intellectual and developmental disabilities find employment. For instance, we had a person bent on becoming President of the United States. We tried to set up an internship related to public policy (not exactly the President's role) and researched what that would look like. He looked at the requirements and even spent a couple of days doing that internship and decided he did not like it. He now does some public policy work, but I think he has given up on being President.
Katherine: This is an excellent example because, typically, developing people are allowed to do that all the time. They go into college and think they want to be one thing before switching halfway through. Many times for adults with developmental disabilities, we tell them, "You're not able to do that thing." When he got the opportunity to try, he decided it was not for him, but if he had decided it was, he would have gained some excellent skills along the way, like a typically developing person would have.
Dennis: We often use videos and pictures as that helps autistic people learn. You seemed to cringe at that. Do images help autistic folks understand what a job might entail, or am I way off on that?
Katherine: I think they absolutely can, and I am all for multimodal learning. I think I cringed because I think that phrase comes from Dr. Temple Grandon. There has been some controversy with her over not necessarily respecting autistic adults with intellectual disabilities and their contribution to the neurodiversity movement.
Another thing with that is I think sometimes pictures can be overused or overly symbolic with the autistic community, and they lose their helpfulness. Pictures and videos can be significant. I think the best option is to try it yourself, but sometimes that is not an option. If you use pictures and videos, the more accurate they are, the better.
Dennis: As occupational therapists, we see ourselves as sensory and environment experts. Are there certain environmental or sensory things we should look at from a neurodiversity-affirming perspective?
Katherine: When I think of strengths-based sensory approaches, I think of Dr. Winnie Dunn in this area. In strengths-based sensory approaches, sensory processing is neutral and not something to be fixed. As occupational therapists, we can work to change the environment or provide coping mechanisms for the individual, but we do not work to change people's sensory systems.
Dennis: I have heard occupational therapists say that we are changing sensory systems, and I have never been convinced that that is what we are doing. I think we help people build tolerance and provide scaffolding support; people can maybe tolerate senses in a more difficult way.
When I was younger, I used to do some work at a school for the blind, and some of the kids had autism and were incredibly tactility defensive. For them, they had to tolerate touching things. Working with neuroplasticity in kids and adults, there will be some changes. It helps people develop their likes and their dislikes. How can we be neurodiversity-affirming regarding how we work with sensation?
Katherine: I think my view is very similar. I would not necessarily call it tolerance. Specifically, OT practice is excellent. One of the primary goals of our sensory practice is not to cause the kid any distress and help them to co-regulate. I disagree with what is happening in the outcome. The actual practice tends to be very neurodiversity-affirming when done correctly; it's incredible.
It allows children to have a safe space to explore with a person they can trust, enabling them to be more willing to engage in activities that might be stressful or painful. However, I do not think occupational therapy changes autistic people's sensory systems. We are indirectly helping them develop sensory and emotional coping mechanisms.
Dennis: What is occupational therapy's reputation among autistic people?
Katherine: It varies. I know quite a few autistic people with good opinions of occupational therapy. However, as soon as I tell them we are "working on desensitizing their sensory systems," it immediately falls apart. I do not know a single autistic person that believes that occupational therapy can do that. Many autistic people have had bad experiences with occupational therapy. Still, unlike other therapies or experiences that autistic people have, I do not think it is a core problem with the profession. I believe occupational therapy is the closest profession to standing with autistic people. We can support them in whatever they need and choose to do. We must stand with them rather than working from an "I can fix you" perspective.
Dennis: You talked about co-regulation and regulation. How do we help people learn some of these strategies so that they see that we are standing with them?
Katherine: Depending on what your practice looks like right now, it might not require that much change to teaching these strategies actively. Suppose you are participating in a child-led sensory approach that involves purposely not creating distress. In that case, we need to reframe our mindset to think that we are not changing these kids' sensory systems but are teaching them coping mechanisms. We also might consider adding more coping and regulation strategies, including more co-regulation, especially for our younger kids who might not self-regulate.
Active regulation strategies that we use are things that occupational therapists are already experts in. Sensory and movement-based regulation strategies are great for children who are non-speaking or have co-occurring intellectual disabilities.
Dr. Amy Laurent and Dr. Jacquelyn Fede do a fantastic job of breaking this down in an autism-friendly way. They are a perfect example of collaborating with autistic adults. Autistic adults were consulted at every stage of their process.
Dennis: Could you talk a little bit about neurodiversity-affirming practices with autistic adults that might have higher support needs?
Katherine: One of the most common comments I get when talking about neurodiversity-affirming practice is that it is only appropriate for "high-functioning people," but that would never work for other children, especially those with higher support needs. This is the opposite of what I would like people to understand. Neurodiversity-affirming care is essential for individuals who are non-speaking or those with co-occurring intellectual disabilities because it is a protective factor. It can help keep kids safe and developing in a regulated way. The principles stay the same no matter the population.
We still recognize all communication as valid, listen to autistic voices, and respect bodily autonomy. We can also make environmental modifications, but some methods change. We will use more somatic, motor, and sensory regulation strategies over cognitive strategies. This approach is essential for those who are non-speaking or have co-occurring intellectual disabilities. There are many available tools to implement this in our practice.
Dennis: This makes me think of sheltered workshops. I would go into this environment, and within five minutes, I was on edge. It is no wonder why people in that environment may have difficulty being successful because I certainly did. We can help people design environments that are going to be beneficial for everybody.
You talked a little bit about respecting bodily autonomy. As OT practitioners, we often use handling with kids. Is that something we must be careful about or not do with kids with autism?
Katherine: Ideally, no. All people deserve bodily autonomy. We, as practitioners, should be trying to move away from handling kids unless there is an immediate safety issue. Obviously, please grab kids if they are running in front of cars. Regarding non-emergent situations, I think we are too quick to move kids without their consent. This is even more important for autistic individuals at higher risk for sexual and physical assaults.
Autistic people often very strongly dislike physical touch. Unless it is for safety, there is no real reason we should be violating this, especially in an OT session where we do not have as many constraints as a parent might, and we can be more flexible.
The second part of respecting bodily autonomy is hand-over-hand intervention. We frequently use hand-over-hand as OT practitioners, which is something the autistic community is vocal about. As OTs, we use it positively to scaffold and teach skills. However, autistic people have intensely disliked the removal of bodily autonomy that this can cause. Instead, I challenge you to use hand under hand. This is a small change, but it allows the child to pull their hand away if they are uncomfortable. We need to respect that when they do.
There are also many situations where the child might benefit from touch, like deep pressure. Or, they may have dyspraxia and need a helping hand. We must listen closely to their body signals, and when they pull or move away, we must respect that.
Dennis: Yeah, and especially folks who cannot tell us they feel uncomfortable.
Dennis: The method you seem to encourage is looking at an occupational therapy practitioner as a coach. I do not know if that language works for autistic individuals or if that is confusing in our role.
Katherine: I think it depends on the setting. I would not recommend this if you are a hand therapist in an outpatient clinic. I do most of my work in a community-based or outpatient pediatric setting where I think it is appropriate to use the term coach, especially when working with adults with developmental disabilities. It is a simpler term that they might have heard before. Many of them have had occupational therapy, but they might think of occupational therapy as the sensory people when I am here to help partner with them on cooking. It can sometimes be confusing, even for the general population. It depends on your view as an OT practitioner and is entirely appropriate if you feel comfortable. If not, I think that is fair too.
Dennis: I like using it, especially with adults, because they are in control. I like the idea of suggestions like a service menu at the occupational therapy restaurant. "Here are the five different proteins, four different vegetables, carbohydrates, and desserts. The person knows their tastes and preferences from a sensory and motor standpoint, which gives them control of the intervention.
Katherine: I think the coaching model is something that we are moving towards in many areas of occupational therapy, especially with adults, but also in younger children. I frequently work with seven to 10-year-olds who are very creative. I let them decide things in the session, which is a better session for us.
Dennis: What are some of your favorite resources that you can let us know to help us be more neurodiversity-affirming in occupational therapy practice?
Katherine: If you are a practitioner, you are entering neurodiversity-affirming practice at the right time. There are so many outstanding practitioners and autistic occupational therapists out there who are making a real difference. I have included a lot of them on a resource list.
I mentioned Dr. Jacquelyn Fede and Dr. Amy Laurent. They have an autism Level Up program that I would very strongly recommend. It is fantastic, especially for emotional and sensory regulation. The other program is Learn, Play, Thrive. They are excellent beginner courses on changing your mindset to a more neurodiversity-affirming one. There are also free options as well/
Dennis: As an autistic occupational therapist, you are doing research as part of your capstone. Are you hoping to publish that? How are you going to share that information with the profession?
Katherine: I am hoping to publish it. At the very least, I can apply to AOTA for a poster presentation or something like it. I will continue to work on neurodiversity-affirming practice regardless because it is essential, and I think we should all be trying to make that shift.
Dennis: Thank you so much. You are an essential voice for our profession; hopefully, you will lead at some point. I enjoyed our conversation.
Katherine: Thank you so much for having me.
Available in the handout.
McGinley, K., & Cleary, D. (2023). Reframing autism from a neurodiversity-affirming perspective podcast. OccupationalTherapy.com, Article 5577. Available at www.occupationaltherapy.com