Interview between Speaker 1 (Meg) and Speaker 2 (Kristie)
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 occupational therapy practice. 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.
On the podcast today I have NYU OT Professor Kristie Patten. Kristie is one of those people who is unbelievably generous with her time because she is so committed to changing the way OTs work with autistic kids. Kristie’s area of interest in research is how we can use a strengths-based approach when working with kids on the spectrum. After I first read something Kristie wrote, I contacted her and she immediately hopped on the phone with me for over an hour to help me think through some changes I wanted to make in my online training to reflect what I was learning.
Give this interview a listen and let me know what changes it inspires in your own work. We’ll talk about it in my Facebook group, ‘Learn, Play and Thrive – Autism Resources for Professionals,’ which I’ll link to in the show notes. Here’s the interview.
Meg: Hi, Kristie!
Kristie: Hi, Meg! How are you?
Meg: I’m good. I’m so excited to have you on the podcast.
Kristie: It’s great to be here.
Meg: So before we get started, can you give us a quick introduction to who you are and what work you’re currently doing?
Kristie: Sure, sure. My name is Kristie Patten, and I’m chair of the Department of Occupational Therapy at New York University here in New York City. I have been a professor for many years at Temple University prior to coming to NYU, and I do projects related to strength-based approaches in autism.
Meg: Awesome. So Kristie, I first came across you when I read an article that you wrote about an authentic strength-based practice. And as soon as I read that article, which I’ll link to in the show notes, I thought, “I have to talk to this person, and think through what changes I can make in my work that will reflect the things that you were saying.” A lot of folks aren’t really familiar, or aren’t deeply familiar, with a strengths-based approach. Can you tell us a little bit about what that means for autism and why it matters?
Kristie: Sure. For me, it’s an evolving concept. So I think we’re not familiar with this approach because we are taught and trained as occupational therapists to look at kids’ challenges and individuals deficits, and all of our assessments are around figuring out what’s wrong with that person, or what they can’t do.
In the field of autism that’s especially true because we really have said to this community, “You have to act less autistic,” you know? So a lot of our interventions are around that, and very mistakenly. I look at myself as an occupational therapist over the years, and why I say it’s evolving is that I did that when I first started out as an OT. I really looked at going into a situation working with an individual that’s autistic and saying, “How can I fix this? How can I address this challenge? How can I make this easier for the parent?”, which is very good and well intentioned, but misses a really large point that I’ve learned as an occupational therapist over the years.
I’ve now been practicing 33 years so the evolution of this really started for me back in the 90s, when I had a grant where I interviewed along with my colleague, Dr [04:27], a lot of adults that were autistic in this project that we were doing to support behavioral therapists. It was really around sensorimotor — we were the sensorimotor experts, and we were like, “Well, what do we need to tell people about sensorimotor?” So my colleagues and I decided to interview adults. And as we interviewed these adults, it was with just a stark realization that we had gotten so much wrong about not presuming competence for individuals that were non-speaking, really not working with any of the strengths, and seeing what a person can do.
We give lip service to it — and by that, I don’t want to demean what OTs are doing — but all you need to do is look at your own assessments. And if you have one or two sentences on strengths and what the person can do, and then the rest of the assessments is about what they can’t do — that’s a nice reality check. And it’s through no fault of our own. I’m a professor. This is how I trained students years ago, this is how we were trained as occupational therapists, to really find the problems. The problem with that approach is that it really doesn’t help the person live a meaningful life. They are not going to be less autistic, and we wouldn’t want them to, now. I wouldn’t want that for any of the individuals that I work with.
And I often say to people who have a hard time understanding this — you know, we don’t ask a blind person that we’re working with to see more like me. And we don’t ask someone with cerebral palsy to walk more like me in order to be accepted. But we do this time and time again with our autistic community where we say, “Success means that you’re more like me.” And that is the hallmark of a medical model of disability, a deficit-based approach that really doesn’t recognize that a lot of what individuals that are autistic are dealing with are related to the social model of disability and the social context; the social world is really the most disabling condition.
And when we interviewed these adults in this project and then over the years with all the work that I’ve done, the problem isn’t, “I’m autistic.” Yes, there are some challenges that go with that, that we as OTs can really support and help, especially around the sensory and the self-regulation, but I think the problem is not that, “I’m autistic,” the problem is the work environment is not built to play to my strengths. The school environments are not built to play to my strengths. And then I’m tried to be put in this box with ridiculous expectations, you know? For example, use of interest and using interest. You have a three year old, I think?
Meg: I do.
Kristie: If your three year old is interested in — again, I’m showing my age, I don’t know what three year olds are interested in now — but lets take Dora the Explorer or Daniel the Tiger, I don’t know. You buy things about Daniel the Tiger. You reinforce that, you let her have sheets, you let her play, you watch the show, you just do more and more with that interest. But with autistic individuals, what we’ve done is we have pathologized those interests and said that they’re restricted and repetitive, and they’re no good. So you then see that being translated into schools having like, ‘No train talk’ and we’ve created these situations where kids that have this genuine interest — yes, they’re more focused and different than some of these non-autistic kids, but they’re genuine interests and it can actually lead to real connections later down the road with employment. But we’ve pathologized them in a way such that they’re now something that we’ve got to address and get rid of.
Meg: Yeah, I get this question a lot about whether we should withhold the things that a child is very interested in from them to encourage them to do other things. And I give a very similar answer to you of how can we actually use what the child is interested in to help them do more things and to help them grow their strengths, and learn more about the things that they’re very interested in. What do you usually recommend that people do instead of withholding those interests to help a child engage in many different activities in their day and in their life?
Kristie: Well, I think the problem is if you start with using interest for more control and coercion. Because if that’s your starting point — if I withhold them in order for you to do something, then I’m in control of them. I tend to kind of flip the script on that and say, why don’t you start at a place where you’re using them for peer relationships, learning academic content, being in social spaces and social skills groups built around interests, you know? Let that be your starting point and your default setting.
So, for example, we have kids that love subways. They know everything about subways — the A train, the F train, the 1 train; they know everything about it, and it’s really a passion. If I use it for coercion and control, then you have to be more like me — I’m gonna go to that — be more like me, act more like me, in order to get something that you so value intrinsically. We don’t do that. We don’t do that to kids that are not neurodiverse and not autistic. So that premise right there is wrong and we have to question that premise very strongly. So, instead, if you had something you care passionately about and is part of who you are and how you understand the world, to hold that out until you act more like me and not like you is really a faulty assumption. So you have to question that assumption first and just think about it.
Meg: One of the things that this calls into question is a strategy that a lot of therapists use of ‘first, then’. So first, do your letters, then you can have whatever it is that you’re very interested in. So what do you think about that strategy? Is that is that the withholding that you’re describing?
Kristie: Yeah, so how about, “Okay, so I have this great game where you’re going to fill in all the directions where the subway cars are going with your letters.” That’s like, you had me at hello! Like you get who that kid is, you understand what is meaningful to him, you work on something that’s challenging by using those interests, without withholding. The issue with therapists — and I tell my students this all the time — is that it’s really hard to be a good therapist. It’s really easy to be a bad therapist.
And I think it’s easier to say, “Do this first, then this,” versus, “How can I use this interest I may not know a lot about — Pokemon or something like that — how can I use this interest to work on some of the goals and goal areas that I actually think are important, and not related to making this kid look less autistic?” That’s the key. You need to also question your goals. What are you trying to get from this kid? If you’re trying to get eye contact, and every autistic self-advocate has said, “Listen. Stop trying to get eye contact. I can comprehend more when I’m not looking at you,” or, “Your face is really distracting,” or it’s sensory overloading. You know, I think we’ve got to really listen to the experts that are the autistic individuals that are teaching us more about autism than anyone that is not autistic with a PhD can.
Meg: Yeah, absolutely.
Kristie: And I’m talking about myself as well.
Meg: Yes, definitely. I hundred percent agree. I do have a question — one of the sort of caveats that I’ve given in the past when I’ve said, “Don’t limit access to interest, instead incorporate them,” is technology. And very young children — and I’ve been challenged on this before, which I find really interesting of kind of stopping the barrage against technology. So I’m wondering what you think if it’s a very young child, especially under three, and their interest is really into screens. Would you limit that in order to help them engage in other activities, or would you use that to teach them?
Kristie: It depends on what they’re doing on the screens. Again, I’m so informed by people that I’ve talked to that are autistic. So many of the people that were non-speaking—and I don’t use the word ‘non-verbal’ because that implies cognitive delay, and we know that’s not the case for a lot of these individuals once they find a way to access communication — a lot of the individuals that I have met and know that are non-speaking talked about use of screens at a very early age and as they got older. Especially repetitive use of screens like watching the credits roll on YouTube videos is a common one, or watching the credits on a Disney movie, or watching Disney movies over and over again. There’s a lot out there that individuals I’ve talked to have said, “We were learning letters. We were learning spelling, we were learning how to read, because guess what? No one else was presuming that competence.” So one of the things I always say to therapists is to look at what is the repetitive and restricted behavior around screens. If it has to do with a lot of letters, they’re probably figuring things out that you don’t think you’re capable of, or they’re probably figuring things out that have much more meaning and salience to them than you have when you watch those movies.
Owen Suskind is a great example of this. If you haven’t watched ‘Life, Animated’, I would highly recommend it. He learned about relationships through Disney movies. He learned about self-efficacy through Disney movies. He learned so much that he then, when he had the words, could describe about Disney movies. So I never say, “No, they shouldn’t use screens.” Be a detective! What are they using screens for, and connect with them over some of your best guesses about that. If it’s Blue’s Clues, if it’s whatever it is, they’re probably learning things that are very different than perhaps the drills they’re based with during their therapy or instructional time. So what are they accessing that they are not getting from the humans in their world? And it may be something really important.
Meg: That is so interesting. That really adds a lot of nuance, even on the screens and young kids’ conversation when it comes to our young autistic learners. I want to go back to something else that you said — you were talking about social skills groups, and this is already becoming a theme. We talked about this in the last episode with Damien; how we can connect over our interests, rather than training social skills. Can you say that a little bit more about that?
Kristie: I can say a lot about that. [Laughs] It goes back to that example that I gave. If you had your daughter adore Dora the Explorer, you buy things. And if you want to be social and if you want to socialize, you don’t go to a social skills club that teaches you to screen social skills. You socialize around your interests. You don’t join a book club if you’re not interested in books, you don’t join an exercise class if you’re not interested in exercise. You socialize around your interest, and if you like music you go to a concert with friends who like music, you know? A lot of how we socialize is around interest. So then to say with this group, “We’ve got to change it. We’re not going to socialize around interests because you’re too focused on those. What we’re going to do is we’re going to put you in a social skills group so you ‘learn’ social skills in order to go to do things that interest you.” So it’s backwards!
It’s got what I call the ‘fallacy of readiness’. And the fallacy of readiness, I think, is this — you have to demonstrate these behaviors that we’ve deemed as ‘readiness behaviors’ in order to go be social or go get a job, when, really, put me in situations where I have high interest areas or I can excel with my strengths, and you might see a very different social person. And I think we have a grant right now funded by the National Science Foundation. It’s in the schools and it’s on pause right now due to the COVID crisis, but it’s inventing design and engineering for students that are autistic and are inclusive maker clubs.
And the maker movement is really key here, I think, because it allows students to express themselves and bring their interests. We have students whereby if you’re interested in the President’s and that’s your thing, you’re going to learn how to 3D-print Teddy Roosevelt. But you’re going to learn skills, and you’re going to learn these skills that are in line with your interest. And what we found — I have a couple of PhD students that are working with me on this project — what we’re finding is when you put kids in these interest-based clubs — and this is one of those ‘Duh!’ findings, I think — but when you put students in those clubs and high-interest areas, there’s no difference between how they’re social and how others are social.
And guess what? You’re not teaching them in a social skills model at all. You’re facilitating interest-based activities, and you’re really looking at how they’re socializing. And there’s a lot of research out there that says interest-based definitely gets you more socialization. But one of the things that several researchers has found as well is that if you look at the research — and this is that deficit-based approach, right —researchers have always looked at what is wrong with how that autistic individual socializes compared to the non-autistic population. And every time, the autistic participants come out as ‘less than’ as far as social with that paradigm. But more research is being done that says if you look at how autistic individuals socialize, and autistic individuals towards non-autistic individuals, you get those findings. But now let’s change it up. Let’s look at how non-autistic individuals understand the autistic point of view, or the autistic perspective, or the autistic theory of mind. And guess what? They’re not that good at that.
So if we shift things up and shift that paradigm in research as well, you find that non-autistic individuals are not that social with autistic individuals as well. And so how do you bridge that gap? I think a lot of that has to do with not social skills training of this group in isolation, or social skills training with inclusive groups but only focusing on that autistic individual’s social skills, but really looking at interest-based clubs and how both groups can connect over this interest and learn a lot from each other.
Meg: That’s interesting, Kristie. When I was speaking with Damien, we were talking about how we saw a lot more social success in groups that weren’t mixed between autistic and non-autistic learners. And I was saying that I’d seen the same things in my leisure groups. When it was just autistic folks, they flourished and had so much fun. And when I brought in neurotypical peers, things got really stilted and nobody was having fun. But I hear you saying that since both groups need the experience and skills, is there a way we can facilitate more success in those mixed groups of autistic kids or adults with their neurotypical peers?
Kristie: Don’t have it be a social skills group. Do engineering. If everyone’s learning how to Tinkercad, and no one knows how to Tinkercad; if everyone’s learning how to 3D-print, and no one knows how to treat the print, but it’s a high-interest area for the autistic students, you’re going to have a better outcome than if you say let’s do a social skills group and mixed. Why would you do that? I don’t do social skills groups at all. Like we are really wedded to the idea of interest-based clubs, and we’re working with high school students now to help define how that looks like in high school, and the autistic students are coming up with it. Because there’s an affinity to be with people that understand you, right?
And if you’re constantly held up to a standard where you’re viewed as ‘less than’, it makes sense why we’re more successful when we just have autistic individuals. That’s why Autistic Self-Advocacy groups, #ActuallyAutistic hashtags — we don’t need to infiltrate that. We don’t need to go into those groups and say, “Hey, you gotta include more non-autistic individuals.” But if we’re going to do these groups that are in inclusive settings, don’t do it around social, and have it be where the goal is to help these autistic kids be more like non-autistic kids socially.
Meg: So do you do any explicit instruction for your non-autistic learners on the social skills that they might need to be successful in these mixed groups, or do you just let the opportunities for folks to learn from each other arise naturally?
Kristie: What we’re doing in the interest-based clubs is these are arising naturally. There’s not something that you need to do to have individuals be more social around 3D-printing.
Kristie: But what happens is, they help each other problem solve. They get very excited about what they’re making and want to share it with someone else, whether you’re autistic or non-autistic, and I think that it’s just more natural. It’s more natural than having those social skills groups that we typically find ourselves in.
Kristie: I also want to say another thing too that I think isn’t said enough. Most of us are women as OTs in this field, and a lot of the autistic students we are working with are boys and young males. And we are socializing them in our social skills group to be social like we are. That’s problematic, because there are some differences. And I joke about this but I think there’s some reality to this. If you’re out to dinner with a bunch of friends and you’re a woman, you get up to go to the bathroom and you say, “Hey, who wants to come with me?” I don’t think men do that, where they get up and go, “Who wants to come with me?”
So there’s some research in non-autistic literature that talks about males where their socialization is usually around activity. A lot of times it’s around activity, and we as female educators in this space are working on the assumption that you will socialize like I socialize, which is around talking, eye contact, and reciprocity. A lot of those things that we view as important may not be as important. So I think that interest-based clubs is a perfect opportunity for occupational therapists. If we think about these interests and these passions that our autistic students have, these truly are their meaningful occupations. Truly. So how do we use them versus hold them out and control them. That’s the bottom line.
Meg: Yeah. And I’ve read before that our lessons span over 60% of their time and leisure. So they couldn’t really be a more important meaningful occupation to give our folks the opportunity to spend time on.
Kristie: And it’s not just leisure, you know. A lot of these interests lead to careers. And they lead to vocations, and then to social connections.
Meg: Absolutely. So when you were talking about therapists largely being women teaching largely boys, young men, and men, I feel that with our adolescent leisure groups — or they often are now social skills groups — it seems like we have three strikes against us with being the social skills teachers. One, we’re often female; two, we’re adults, we socialize like adults and not like children; and three, we’re neurotypical and have our own challenges with taking the perspectives of an autistic learner. So it sounds like what you’re saying is that their peers in that interest-based group are going to be much better teachers for each other, autistic folks for neurotypical folks and vice versa. And they can learn the skills to work together while they are doing something interest-based. Does that seem right?
Kristie: Yes, absolutely. And they can learn skills. We have another project in the summer that we work with, especially Easter, with a Lego robotic summer camp. And what they have to do with Mindstorm is to bug and debug, and it’s very computer based. This is with our high school students. They have to learn how to program, bug, and debug; but what they’re also learning in that summer camp — and we have a couple of our school system OTs that are working in this program — is presenting. They’ve got to be in a scrum, a team where they problem solve, but they also have to present a PowerPoint every other week. So this will be about what they did and how they solved it. They’re presenting on a high-interest area, but they’re also learning presentation skills in front of a group and putting a PowerPoint together, which is very different than a social skills group. But you’re seeing so much happening that will serve them well long-term that is very different than, “Lets all be social together and learn how to be social.”
Meg: Yeah, it’s really exciting actually to imagine moving beyond this stilted social skills session or social skills group that really isn’t motivating or interesting to anyone. Where maybe you have to offer reinforcers or some sort of reward system to bribe participation out of people, towards something that’s actually interesting and intrinsically motivating and they have a reason to work through the social piece because it’s actually interesting.
Kristie: And I think a lot of OTs might be hesitant because they’re like, “Well, I don’t know how to do engineering, I don’t know how to do…”, and it’s not just a STEM fields, there are a lot of autistic interests that go well beyond STEM. I think that’s a little bit of a limiting view. But let’s say you have students that are really interested in history, and the therapist might say, “Well, I don’t know about history to do an interest-based club around history.” Well guess what, that five year old probably does!
And also, what we’re trying to do is hire autistic consultants. So if you are wanting to make this shift and you are saying, “How do I do this?”, talk to someone that’s autistic. Talk to someone about what they wish they would have had in elementary school, middle school, or in high school. Hire them as a consultant if your school can hire them as a consultant to develop these interest-based programs. We’ve got to do more of this, we have to do more of this. We’re putting together resources where that autistic perspective is central. And I think if you’re unsure of what to do, that’s always going to be your first step.
Meg: Yeah, I want to ask you more about that. I’m hearing an objection in listeners heads that I want to ask you about before we move past the leisure group. With the limitations of our medical model, so many OTS can only bill for one-on-one direct individual sessions, and what you’re describing is a group model. So what can those therapists do, who are kind of stuck in a room with a kid and maybe their family?
Kristie: Do the same thing with that kid. Connect them with their interest. Don’t discourage their interest, connect them and find resources that connect them to larger groups. If the kid is really focused on — I had a kid that really focused on recipes and the numbers on recipes. Connect them to a cooking class. What are the resources out there? Are there resources where they have cooking classes? Or work with the family, that would be a fun family activity. Keep it as your central kind of core if you’re looking at socialization, because they’re gonna be more successful.
Meg: Awesome. So some of that work might have to happen outside of the session but the therapist can play a role in advocating for it and connecting them to it.
Kristie: And I think the therapist can really become good coaches, I don’t think we use coaching enough and I think the research literature is pretty strong about the efficacy of coaching and goal attainment.
Meg: So you have done some interesting work in your career. I want to talk about how your autistic colleagues have played a role in it. You have a couple of projects that I know about — that ASD Nest Program, and also a writing project that you’ve done for AOTA. Can you talk about how you’ve involved autistic colleagues in the work that you have done?
Kristie: Sure. The AST Nest Program is a New York City Department of Education inclusion program. It serves kids that are capable of doing grade-level work that are autistic, but need support in self-regulation, academics, behavior, and social. We’re the largest inclusion program in the country. We’re currently in 54 schools in the New York City Department of Education, educating about 1000 autistic students alongside about 6000 of their typically developing peers, from K through 12. And what we have done with involving autistic individuals is from the very beginning when I got involved, we looked at professional development opportunities for our therapists.
One of the earliest involvements was having Jesse Saperstein, who’s an autistic self-advocate, meet with our OTs and speech therapists where at that time we were probably around 80 total. That number has grown exponentially. We now have probably about 90 just OTs in the program. But we wanted to learn from him, so we started these professional development opportunities where our staff in that program — NYU supports that DOE program, so we’re the NYU ASD Nest Support Project that I’m Principal Investigator of. We support the Department of Education Program.
So we started having collaborations with autistic self-advocates by professional development. With the professional development that we had, we were recognizing them as experts very early on. So they would come in and would train our teachers and therapists, and obviously the response was very positive. All of a sudden we were having, “Wow, this is great information. We didn’t know this.” We then continued that with some grants that we received and did a project called ‘Keeping it Real’ where your listeners can find online, and all the resources are accessible. We had three self-advocates — Stephen Shore, Jesse Saperstein, and Zosia Zaks — talk about self-advocacy, bullying, and use of interest. And we made those resources available to everyone. They really worked with us on each of those modules on self-advocacy, anti-bullying efforts, and use of interests in the classroom.
So everything that we do on a large scale is always and primarily informed by autistic self-advocates. It’s not something that we feel right about, doing anything in absence of that. We hold an international conference every other year called NestCon, and over half of our speakers, and both of our keynotes — one of our keynotes this year of the two — are autistic. So we place a premium value on learning from our autistic colleagues, and we support them, we hire them as consultants, and they are really central to doing what we do in that program in supporting teachers and therapists.
We are also currently developing an online platform content that will be available for schools nationwide and internationally, where at least 51% of it is created by autistic self-advocates as experts for school systems, therapists, educators, and administrators. We were supposed to roll that out in the fall, but with the COVID-19, I believe we’re rolling it out January. It’s where therapists and educators all over the country can learn from autistic self-advocates in a systematic way.
Meg: That’s so great. I’ll link to some of these things that you mentioned in the show notes. I feel like with my own teaching and training business, I was late to the game in getting autistic input and autistic consultants. But when I did, my work changed immediately in a good way. So it’s an exciting process to undertake. And I like how you said that the students’ response was, “Oh, we didn’t know that.” I think that’s all we’re being asked to do. It’s to say, “Oh, I just learned something new, let me change what I’m doing.”
Kristie: Right. And you know what, one of my favorite sayings — because I’ve talked to therapists who’ve said, “Oh, I wish I would have known this, and it’s changed my practice so much,” — and I say to them one of my favorite quotes by Maya Angelou. “You do what you know. When you know different, you do different.”
So to me, listening to autistic individuals as a neurotypical professional and changing how I practice, which I fundamentally have done, and I cannot see it any other way, is because I know different now. And I think that knowing different is not going to happen until we actually listen to autistic individuals. I think the more that we do that — you can choose to ignore it and keep going along in the medical model, saying, “No, my way. This is how I learned, this is better, we’re going to get better skills…” — or you can fundamentally question some of the assumptions that you’ve learned. That really, really can be transformative. Like you said, you may be late to the game but you changed the game. And it will be a game changer for those you serve and their families.
Meg: Kristie, you were one of the authors on AOTA’s Practice Guidelines for working with autistic people. Can you tell us a little bit more about that, and how you incorporated autistic voices, and what you’re excited about in that book?
Kristie: You know, it’s funny, my colleague and I weren’t going to do it. We talked to AOTA and said, “We’ll only do this if we had authentic autistic input,” because we felt that some of the other practice guidelines didn’t. And we said, “If you guys are willing to do it this way, we’ll do it.” I actually think it could have even been more so, but what we did is we had an autistic self-advocate go through and edit the sections for language, respectful language, and looking at some of the things that were in it. We had another autistic OT write a case study in it, and we also included some of the DSM redefinitions by an autistic self-advocate, which is great. He did the DSM-4 definition in a book chapter that we wrote in the OT book of autism, and he did the DSM-5 in this edition, where he rewrites it from his perspective, which is very different from the medical model language of the DSM.
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Meg: Alright, so some of the things that I have really taken away from talking to you today are that we need to respect the interests of our autistic learners rather than withholding them. And we can move away from the social skills model towards creating more opportunities to engage in groups around what our autistic kids are interested in, and that also we need to make sure we’re listening to autistic voices and letting them inform our work. Are there any other takeaways that you want the therapists listening today to get from our talk?
Kristie: I think a lot of therapists might be working with individuals that are non-speaking and don’t have language, but have some of these interests. I would say a big takeaway there that we haven’t really touched on would be to presume competence. I touched on it earlier, but presume confidence. It’s a ‘do no harm’ proposition if you presume that the individual that can’t speak can understand. One of the things I’ve learned over the course of my career is they can. And if you treat it as a ‘do no harm’ proposition, then you’re also going to find ways to really try and help them with communication. I don’t think OTs do enough about problem solving around communication. And I think the autistic community is waiting for professionals to really delve into communication and meaningful communication in ways that a person can show what they know, that really respects where they are, and that presumption of competence.
I’ve worked with a lot of non-speaking individuals that reflect back — once they found a way to communicate independently — on how frustrating it was to not have people presume their competence. And drills of putting a yellow block on a blue block — and when I have significant dyspraxia and can’t put the yellow block on the blue block yet I know exactly what you want me to do, and that individual marks you wrong, it just reinforces, “No one believes me. No one thinks I can do this.” So really fundamentally change how we engage with individuals that are non-speaking.
And if I am called in to do evaluations now with individuals that are non-speaking, and I really only have time to do the random evaluation, the first thing I do is that I let them know that I understand. And I understand that they can understand more than they can express, and my job is to help them live a more meaningful life by getting more and more people to understand that.
Meg: I love that you start with that. That really highlights the shift that you’re asking us to make away from, “Okay, I’m here to figure out what you can’t do and how I can teach you how to do it,” towards, “I’m here to respect you and meet you where you are, and learn about all the things that you are good at, the things that you love, and the things that you bring to your family, your community, and the world.”
Kristie: And the things that are challenging for you! That’s a part of this. I think the misnomer is that a strengths-based approach means ignoring challenges. It doesn’t. There are challenges associated with autism. But what we’ve done is we’ve only focused on that, and to the individual’s peril in ways that can lead to a lot of co-morbid conditions like anxiety and depression. Professionals have to make this shift. I mean, imagine if every day you went to school and you worked on things that were hard for you, and you got input that it wasn’t good enough; you’ve got things taken away from you that were meaningful, and you never met your goals as the way that I set them. That’s your life. That’s K through 12. That’s a long time to not feel that you’re good at anything. You and I, we do not build our lives on our remediated weaknesses. No one does. No one builds their lives on remediating weaknesses, yet we have systems in place where that’s the focus for a significant period of time. So how do we crack that, and how do we really, as therapists, not contribute to that paradigm?
Meg: Thank you so much, Kristie. That’s a challenge that I think most of us need to hear, and need to chew on and work through. You’ve mentioned a number of your resources and I’ll link to them in the show notes. Is there anywhere else we can find you online so that we can learn more from you?
Kristie: I’m available on the web — NYU, the OT department. If you want to contact me, my contact information is there, and I’ll be more than happy. The more people that get this perspective, the better it will be for the population that I care deeply about. So feel free to contact me.
Meg: Thank you so much, Kristie. It’s been such a pleasure talking to you and learning from you today. And I am so excited to put this podcast out there to the world so that more of us can start to make these shifts that it’s time for.
Kristie: It was great talking to you, Meg, and thank you for doing this and getting the message out.
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.