Article 19 – Neurodiversity Part 1
Listen to more Article 19 Podcast Episodes
Tamman President Marty Molloy and contributor Kristen Witucki discuss the intersection of neurodiversity and accessibility with education. They are joined by a panel of esteemed guests:
Damien LaRock – Special Education Teacher for the New York Government;
Elizabeth Finnegan – Assistant Professor of Special Education at St, Thomas Aquinas College;
Nate Stauffer – Master of Education from Harvard University; and
Daniela Arcuri – Special Educator working towards Behavioral Analyst Certification
Enjoy this wide-ranging conversation that dives deep into teaching strategies, mental health in the classroom, accommodations for students, and much more. If you want easy access to the links discussed in this episode, please check out the podcast on our website: Tammaninc.com/learn/.
Full Transcript
Marty:
Hello, and welcome to Article 19. My name is Marty Molloy, president at Tamman, and I am the host for our conversation today. I am surrounded by educators, researchers, mentors, and all around brilliant folks where we are going to tackle the topic of neurodiversity. What does it mean? How are educators in schools working with kids who are neuodiverse now? And what do we need to be thinking about as workplaces and as a society moving forward? My cohost for this episode is my colleague, my friend, Kristen Witucki, author, educator, mentor, and regular Tamman contributor. Kristen, hello, my friend.
Kristen:
Hello. Thank you for having me.
Marty:
Yeah, I’m so excited that we’re doing this.
Kristen:
I know. Finally.
Marty:
And many more to come, I think, with you and I joining as cohosts. Before we introduce our guests, let’s take a moment to talk about this topic in sort of broad strokes. At Tamman, we’ve been talking about neurodiversity for a very long time. We have colleagues who identify as neuro diverse. It has come up as part of other digital accessibility events and talks that we’ve done, but whenever we’ve tried to put something together specifically about this topic alone, it has just felt so daunting. And Kristen, I know you and I have talked about this, that this is just a really huge topic for us to tackle.
Kristen:
The brain is a really mysterious thing, and I think when we think about neurodiversity there are so many different angles to how people read, how they digest information, how they think, how they perceive everything, and how they express themselves.
Marty:
And the WCAG, the Web Content Accessibility Guidelines, which is a bit of the bible for digital accessibility, it certainly touches on cognitive issues, and those are often held up in that space as some of the most difficult and unique needs in accessibility. I don’t think it’s any different, frankly, in education, as it were, but one of the things that people struggle with regularly in the digital accessibility space, and you just mentioned it, Kristen, is reading level. What is the most appropriate level for a particular website? If you have something that is academic and research based and peer reviewed, well then, that reading level is likely more appropriately something quite high, whereas if it’s a marketing site or an ecommerce site, what is the appropriate reading level at that level? So we definitely have been struggling with this and trying to find some rules and rules of thumb about all of this, as would many other professionals in the field. So, with that, today we’ve assembled this group of experts who focus on neurodiversity in educational settings, whether it’s in their lesson planning, mentoring colleagues about individual needs, research, and then teaching future teachers and leaders in this space. We’re really excited because sometimes industry leads education, but in this case educators and specifically what is happening in the laboratories that we call classrooms, I think they are so far out ahead of companies and industry on this issue, and we have a lot to learn from them. So, with that, Kristen, do you want to introduce our guests for today’s podcast?
Kristen:
Sure. It’s really hard to figure out a great introductory order, but I’d love to introduce each of you, and if you could talk a little bit about yourselves, that would be great. So, I’ll start with one of my very good friends, Dr. Damien LaRock. He is a special education teacher. He teaches this year a third-grade self-contained class, and he’s also a researcher with a focus on people who have intellectual disabilities or autism spectrum disorders, so thanks, Damien, for coming.
Damien:
Thanks so much for having me. I’m pretty glad to be here, and yes, I am currently a special education teacher at P.S. 148, a public elementary school in East Elmhurst, Queens, and I love it here. It’s a great community, and we have wonderful students, wonderful staff, fantastic parents, and as Kristen mentioned, yes, I’m also a researcher, and I have interest in a variety of different topics, but in particular standards-based education for students with disabilities.
Kristen:
Thank you, Damien, and next we have Dr. Liz Finnegan, who is a professor of education at St. Thomas Aquinas College, which is a very well-known in the area. And Liz, welcome to the show. Thanks for coming.
Liz:
Thank you very much, Kristen. So, just to tell you a little bit more about myself, my pronouns are she her [ph]. I am a professor of education, but most of the courses I teach are in special education for people that want to become teachers, and some of those preservice teachers want themselves to find themselves as neurodivergent, so that we see that becoming more apparent in the college community. My qualification for being here is probably that I was one of the founding members of the autism spectrum research committee, which is part of the American Education Research Association. One of our goals was to really consider autism through a neurodiversity lens.
Kristen:
Thank you. We’ll look forward to hearing more about that when we start the show. Our next guest is Daniela Arcuri who is a special educator, and she’s also a soon-to-be board-certified behavior analyst, and as we were talking out before the show, behavior analysis is pretty well understood in schools and pretty mysterious to the rest of the world, so could you explain a little bit more about what you do on a day-to-day basis?
Daniela:
Yes. I totally agree with that statement, actually. It’s so nice to be here. Thank you for having me. So, basically, what I will be doing, what I’m being trained in, is to observe and analyze patterns of behavior and develop treatment plans to increase or decrease those patterns of behavior, depending on what we wanna do, but I work in a public elementary school now. It’s in Borough Parkin Brooklyn. It’s a great school. We also have a wonderful staff, wonderful students. I primarily am trained in nonverbal students, and my focus was on autism spectrum disorders, and I teach activities of daily living. I teach how to increase their independence with functional skills, so how to brush teeth, toileting skills, how to use different forms of communication, such as their tablets instead of verbal speech, and I love it. I’ve been doing this since September, but before that, I was a six-to-one-to-one teacher for seven years, and I loved that too, and I decided to try something different, and it’s working out, and I hope to continue.
Marty:
For the noneducator, I’m gonna jump in. This is Marty. Six-to-one-to-one. Daniela, I don’t know what that means. I’m sorry.
Daniela:
Yes. It’s so funny because this makes—I think a six-to-one, it’s of one percent of all New York City education classrooms, so it’s six students, one classroom paraprofessional or teaching assistant, and usually a behavioral management paraprofessional. Now, it doesn’t always quite work like that, so you always have one paraprofessional at least, which is the classroom, that’s designated to the classroom. But then usually with early-level learners such as our population of students, usually exhibit aggressive behaviors, and they are nonverbal, so they need a lot of support, so I would end up with five paraprofessionals, me being the sixth adult in the classroom. It was always eventful, but I loved it, and so I was a general education teacher for a bit, and I decided, I was like, you know what? This is just not for me, so I went into special education, I found my niche, and now I love it.
Marty:
That’s great. Thank you.
Daniela:
You’re welcome. Thank you.
Kristen:
And last but certainly not least is a frequent guest on the pod, Nate Stauffer [ph], who is a middle school teacher who works very, very passionately to promote inclusion in all of its forms, so welcome, Nate.
Nate:
Thanks Kristen. Hey, everybody. Excited for our conversation. My name’s Nate. I use he him or they them pronouns [ph]. In the interest of transparency, I am Marty’s nephew, which is part of why I’m a frequent guest on the podcast, but I’m also an eighth-year classroom teacher, currently teaching in Brooklyn. I’ve worked in public, private, and charter schools, so I have a good understanding of how students with disabilities are impacted in different areas of the education sector in America in 2023.
Marty:
And in full transparency, I have lots of other relatives who I don’t invite on, so Nate, I think it’s about your brilliance and your expertise and what you bring on, so no offense to any of our other members, but no, you’re not coming on anytime soon. I’m just kidding. All right. Welcome, everyone. We are so in awe of your expertise and your examples, and so we are going to just dive right in. When we say neurodiversity, what do we mean? And aren’t we all neurodiverse in some way or another? Liz, let me kick it off to you. Can you talk a little bit about that?
Liz:
Absolutely. So neurodiversity is a term that’s used to describe the infinite variation in neurological functioning with human beings. I’m using that definition—yes, you’re right, Marty, everybody is neuro diverse. Why has it become such an important conversation in the world of disability? So, we see that a group of people would define themselves as neuro diverse because they see themselves as markedly different in the way that their brains function, so examples of that might be maybe they pay extreme attention to detail, and the details are very important to them, or they have a very rigid, systematic way of approaching a problem and thinking about the problem. On the other end of the spectrum, you might get people that are very creative thinkers and think in terms of many, many possibilities, but they would describe themselves as having a markedly different way of thinking than what we might describe as neurotypical or mainstream ways of thinking.
Marty:
That’s great. I very much appreciate that definition because I don’t think I’ve ever heard it put quite so succinctly. So, can we talk about neurodiversity and neuro diverse thinking and neurodivergent thinking as a monolithic concept? Is this spectrum just too broad? Even if we narrow it from what Liz was saying about the infinite possibilities to folks that may fall outside of what we would call mainstream or neurotypical, is this something that we should really just—let’s just end the podcast here. Damien, what do you think? Is this is just too much for us to tackle in one bite?
Damien:
I would say that it’s definitely a big topic, but in terms of the definition of neurodiversity, it doesn’t necessarily have to be monolithic. It’s I think by it’s nature not so rigid because as people have been using the term more, the term has evolved form the original definition put out by Judy Singer in the 1990s, and so I think we have to keep in mind that there is some evolution at play here. With that being said, it’s interesting, I’ve thought about this idea of, well aren’t we all neuro diverse? And while that’s certainly true, I think the original intent, and Liz touched upon this, it’s really to distinguish a group of people who see themselves as markedly different, perhaps because they have a defined disability or disorder, something like ADHD or autism spectrum disorder, dyspraxia, dyslexia, dyscalculia. There are a variety of disabilities and disorders that kind of fit together under this umbrella of neurodiversity, so I think as a term it can be really, really useful to use that to talk about all those people together in one kind of bumped group, but recognize the differences that they have in their thinking and processing compared to neurotypical folks.
Marty:
Sure. That’s wonderful. And I am curious how we advance this conversation today and whether or not we kind of jump in and out of some of these different labels and talk a little bit more specifically about one identity group and one—if we’re talking about ADHD, for example, if we’re talking about autism spectrum disorder, and then we pull out and we consider people who might be epileptic or have dyslexia or some other cognitive and neurodiversity issues. So, as we think about being a little bit more precise and as we think about maybe diving into some of these areas in particular, which I’m anxious to do, Liz, can you talk about that in terms of when it might be more appropriate to be precise and when we want to take sort of a group of perhaps some of these labels or some of these—labels is probably the wrong word—some of these diagnoses and separate them out? Because really, are we talking about the same thing when we talk about autism spectrum disorder and, say, epilepsy? Does that make sense?
Liz:
I think I understand you. So I think as teachers we do have to recognize that our students are going to learn material in different ways, so looking at that monolithic definition, which is inclusive of everyone, is important, because we do have to think of a wide variation of learning needs. When we talk about students with ADHD, students with autism, students with epilepsy, is it fair to put them all in the same group and call them neuro diverse? That’s a good question, because there are very clear differences in their diagnoses, and they have a very clear different set of needs, whether it’s medical or educational or whether it’s full functioning in the real life. The term—Damien mentioned Judy Singer, and she herself has autism, so she is an Australian woman who really came up with the term to describe herself as neuro diverse because she found there really wasn’t categorical word out there in society to describe her, so she had autism. She didn’t want to say I’m autistic because that has certain connotations. She didn’t want to say she had a disability because she really didn’t perceive herself as being disabled because she was fully functioning in society. So how does she describe her different patterns of thinking? So she came up with the term neuro diverse almost as a social political class of thinking. It’s almost like gender or almost like race, that here we are neuro diverse, and then if you wanna get those different people together with ADHD, epilepsy, dyslexia, yes, then it makes sense ‘cause then we can group ourselves together and advocate for ourselves as one body.
Marty:
Wow. Wow. That’s great. I am mind blown, whatever that looks like to you, that is very, very interesting. You bring up social political, and Kristen, you and I were talking a little bit about this, that especially more recently, sort of in the 2000s and beyond, that autism seems to have sort of taken up the air in the room, and I’m curious that when people are talking about autism, one, is that true on your world? And two, are people using the term autism because they aren’t sure what else to say when we think about intellectual disabilities or other neurodivergent ways of thinking? Where does sort of neurodiversity and autism as a social political concept, where did it begin and end?
Kristen:
That’s such a huge question. There are books about it, but it’s interesting to think of the students that I work with, they’re blind, some of them have additional disabilities, or they are on the autism spectrum, and I think it’s always been really fascinating. I think that autism can have a danger of being sort of a catchall term for these random behaviors that don’t fit into the social norms or patterns, but at the same time people with autism are working really hard to promote their worlds as being no less legitimate than what might be considered the world to someone who doesn’t have autism, and I think that also falls into that—the idea of—there used to be Asperger’s syndrome was sort of a—it became perceived as kind of a classist thing as people who could possibly fit better into society than others, and I think we’re moving away from that, and so what are we moving toward? And I think that the study of autism is just really fascinating, constantly changing, and people with autism are working hard to define themselves and not just have other people define them, so I think that’s always been fascinating. But when we talk about all of this, are we doing people a disservice when we lump them together? How does that even work? It’s so hard to figure all of that out.
Marty:
I want to bring Daniela and Damien into this because I think some of the work that you both have done and research specifically are working with individuals with intellectual disabilities. When we say autism spectrum disorder, one, is that the same as saying someone has an intellectual disability? That’s sort of question one. Question two would be: If there is a difference, how big is the spectrum, and where do we draw the lines with the types of young people that you work with and that you’ve been working with?
Daniela:
I primarily work with students with autism spectrum disorders. I have never worked with students with intellectual disabilities, but just like anything else, there’s a very big range. With autism especially, you’re going from an early range to a higher range, and so it’s very, very broad. It’s very diverse, and basically the way that my colleagues and I [inaudible 00:17:30] it’s like a processing disorder, and it’s the way that people process information, and the way that they process it and then the output of that information, and so it’s difficult to answer because I feel like every child that I teach is extremely different. There are never, ever two students that are exactly the same, and that’s what makes them unique and special, but I also feel that way about typically developing students as well. You know, there are similarities, but no two are ever the same. and so, we embrace these differences, we acknowledge them, we embrace them, and that’s why our curriculum and what we teach is you have to modify it to suit every child.
Marty:
Nate?
Nate:
Daniela and Kristen’s comments have been sparking a lot of thoughts from me, and I see an analogous situation within the queer community. I identify as a gay man, and I’ve had a lot of comments or conversations with my friends who are also members of the community about why we create that lump term of queer when we know that the experiences of a transwoman in our country are very different than the experiences of a gay man, and ultimately I think what it comes down to, and I think this is also true for the neurodiversity movement, is language is creating spaces that haven’t been built in the society around us so that people can find the comradery that they need in order to advocate for themselves and each other, so we do need both sets of labels. I need to be able to identify myself as a gay man, but I also need to be able to identify myself with the queer movement in order to understand the history I inherit as a member of that community, and the responsibility I take on as a member of that community for those that don’t carry privilege in other areas of their social identity that I do, and I think that’s also true in the neurodiversity movement. We know not every category of non-neurotypical student has the same level of challenge in different subject fields or the same way that content is presented to them, but we need to be able to advocate across the community in order to really make the change that we need to the systems that we are all a part of.
Damien:
And Marty, you mentioned also—you asked the question, are autism spectrum disorder and intellectual disability the same thing? The simple answer to that I guess is no, but going to the point about the broader spectrum, so according to the individuals with disabilities education act, there are defined categories for classifying students when giving them individualized education programs, so a child can have a diagnosis of autism spectrum disorder or a totally separate diagnosis, distinct diagnosis of intellectual disability, and you can have people who are on the autism spectrum who don’t have an intellectual disability, but I think to piggyback on what Daniela was saying, the spectrum is very broad in part because there is a lot of overlap, there are a lot of people who are both autistic and have an intellectual disability, and there are even other disabilities that come into play sometimes. You might have a student who has multiple disabilities. They might have autism, they might have an intellectual disability and a speech and language impairment, so it gets difficult because things don’t always fit into these very nice, neat boxes. There tends to be a lot of overlap, but in terms of are ASD, autism spectrum disorder and intellectual disability the same thing? No, they’re not.
Marty:
Yeah. I’m learning so much right now very, very fast, and trying to process all of it. I think, Daniela, when you mentioned that it’s about processing and people processing things differently. That definitely resonated with me. Nate, I think when you talked about—and we’ve talked about this on previous podcasts as well around language and the important of language and creating these spaces, and we’ll get to this more when we talk about sort of implications for workplaces and society and sort of the future for these young people and teachers who are gonna continue to work with them, but I think there’s this stop-start-catchup, here we are, I’m trying to understand, and I think people are getting inputs from a lot of different places for themselves as they try to figure some of this stuff out when they are not steeped in the education and the expertise that all of you are, so I just really appreciate all of that, and this is wonderful. It does really—and I think this is an important question that we try to think about and ask in a number of our topics on Article 19, which is who are we leaving out? We talked about neurodiversity being typically the infinite number of ways in which people think and process information, but when we dive into it we’ve found that there’s a lot of nuance and there’s a lot of specific things, and then we can talk about specific diagnoses and things like that. Is there anyone who we’re not talking about that we ought to be talking about when we talk with this in mind and these kinds of conversations in mind?
Nate:
If I could jump in here, I think Liz hit the nail on the head at the beginning when she defined neurodiversity for us all and named that it is at once all encompassing but also very specific to individuals who identify as neuro diverse. I think where we should be talking is less then about who was left out of the category neuro diverse, because as we’ve mentioned that could cover everyone in the whole world, and more about the intersections of ability and other parts of someone’s identity, so I’m speaking as an educator who’s working in a system that is built on segregation and a history of eugenics, and for many students who have intersecting marginalized identities, be they from a lower socioeconomic status or students of color, oftentimes they may not have either the access or be identified as having a disability because of other assumptions that are made about them due to other parts of their identity. So, depending on the level of access they have to resources, they may not get the resources they need even though they are legally entitled to them, or if they’re in a classroom with a teacher who views them for one lens of their identity that’s visible and doesn’t view the invisible identity of their abilities or their disabilities, they may be categorized for what the teacher sees and not for what they’re actually carrying, so I think the conversation needs to be broadened less so to encompass more people in terms of neurodiversity but to think about for each person how does our neurodiversity intersect with other parts of who we are and what does that mean for us when we enter a space such as a classroom.
Marty:
Awesome. That’s a very wonderful sort of drop-the-pencil moment. I really do appreciate that. So, Nate and Damien, if I can kind of direct this to both of you—because I think you’ve introduced this topic, Nate, and building off of what Damien said in terms of cooccurring or multiple diagnoses—what are some of the struggles within the traditional education system to accommodate our learners? And what can we do to address some of these challenges? Damien, why don’t I start with you?
Damien:
So, before addressing struggles, I think this is a good place to take a historical perspective and look at how far we’ve come actually because Nate mentioned the history of eugenics, and in general the history for people with disabilities in the United States of America and the world has been traumatic and difficult, and in the United States, really the whole idea of even having special education is relatively new. A lot of it developed as soon as the 1970s, so we’re really kind of only 50 years into this, so I think it’s important to mention, we’ve come a long way, and access to education for people with disabilities has improved dramatically. Rights for people with disabilities have improved. With that all being said, there’s absolutely a lot more work to be done, and there certainly are struggles. As a classroom teacher, I would say that one thing that I perceive in my day-to-day work as a special educator is struggling to differentiate instruction. In my graduate school courses, in my teacher preparation courses, we learned so much about differentiating our lessons for students who have a variety of needs. In practice, I have to say that’s actually a really difficult thing to do, and I’ve been teaching for 16 years. I don’t consider myself a master at differentiating instruction even after 16 years. I’ve worked with a whole variety of colleagues who have shared with me that they also struggle in this area, but the ideal situation is to be able to create an educational system where what we teach in schools is fully accessible and fully differentiated for a variety of learners. Putting that into practice is I think in 2023 a struggle for many teachers.
Nate:
I just want to build off what Damien just said. He’s obviously a more experienced educator than I am in my young career, but I was being educated to become a teacher in sort of the latter years of no child left behind, and for those who are unfamiliar with that set of policies that shaped American education at the start of the 21st century, school resources, school funding was tied to the performance of individual students at those schools, and so students with disabilities were often met with punitive or disciplinary responses if they underperformed the academic standards that they were being held to because the schools had a vested interest in looking like students were doing really well, and so that wasn’t the intent of the policy but in many communities, particularly under-resourced communities, that was the impact of those policies, which is part of why we don’t have those policies anymore.
Marty:
Liz, let me go ahead and bring you in off of the policy discussion there and the resource discussion that Nate was just alluding to.
Liz:
In terms of policy and discipline-specific views in education, disability is very much defined by special education needs in schools, and so we often think of a special education is for students with disabilities, but that’s not always the case because in order to be eligible for special education you do have to be failing. Your disability does have to reflect your educational progress, so if it is not affecting your educational progress and you’re doing well in school, where do you get those needs met? And so one group of neuro diverse learners that is kind of affected by this crack in the system is students with anxiety disorders. Very often part of the way of thinking is that they’re perfectionists, they have to do everything on time, they have to follow the rules and comply with the expectations of the assignment, so they do well in school or well enough, but at the same time their anxiety is being internalized, and that can cause a lot of mental health issues down the road, and that’s one area I think is a challenge for schools, and we do right now see a lot of talk about mental health awareness in schools.
Marty:
You just opened up a whole other episode for us to talk about is mental health in schools. Daniela, I know you want to jump in here too.
Daniela:
Yes. I wanted to piggyback off of what Damien had said before about differentiation in the classroom and how challenging it is, and yes it is because in my career with six students, you would have to differentiate instruction for students with comorbidities, and they had a presence of two disabilities, and you’d have one student who had an autism spectrum disorder alongside ADHD or anxiety, and then you’d have another student with Williams syndrome and also autism, and so you have to prepare—it was really important in a classroom like that to delegate specific responsibilities and roles to the assistants, so that’s also very important, and for that home to school connection, for that communication with parents, and to bring them in and kind of always keep you abreast of what is going on in the classroom and how they can bring that into the home, because especially with students with disabilities, they regress, and so keeping everybody on the same page, that’s super important, so yes, it is challenging, but I think you have to all give yourselves a pat on the back because I think it’s pretty difficult to run a classroom when you are trying to target all of these different goals, so for each student, all these individual goals.
Kristen:
So, what are some strategies that teachers use to basically balance all of that, to balance the needs of individuals against the needs of the group, the class as a community or just the group of students?
Daniela:
So basically, we don’t attend to whole group learning in our classrooms. We are very individualized, and so we try to target small groups or one-on-one teaching because you can have a student who is a visual learner and then another student who is a tactile learner or an auditory learner, so we never really bring them into a whole group setting, and then we use a special type of curriculum, so for instance, we use ABLES, and that is the assessment of basic language and learning skills, and so we assess them using this tool, and then we pull from it to develop individualized goals, and so in our teaching, we address those goals and those goals specifically, so it is important to be as individualized as possible.
Kristen:
Would you say that’s true, Damien, in your class too, or is it a little different?
Damien:
It is a little different. I would say over the years I’ve taught in both self-contained special education classes that function in a similar way to what Daniela just described, but I’ve also taught in ICT classes, which are integrated coteaching classes, essentially inclusion classes. There are two teachers, a general education teacher and a special education teacher, working side by side, and we have a mix of students with and without disabilities. I would say from my experience, particularly with the integrated coteaching classes, there is more time dedicated to whole group instruction, and there’s a lot that can—a lot of educational content and a lot of teaching skills that can be delivered successful to the whole group. When you start to have more and more students with particular needs, then the small group instruction, as Daniela mentioned, becomes more and more important. I would say that’s even the case in a general education classroom. There’s always gonna be a need to have small group instruction to target the specific needs of individual and small groups of learners. Daniela mentioned working with a variety of professionals in her classroom, and going back to differentiation, I just wanna mention I feel like one of the ways that I’ve been able to differentiate the most successfully is when I’ve had a really strong team of teachers to collaborate with, so differentiation as a single teacher with a large group of students or even with a small group of students can be really daunting, but working together with a team of dedicated colleagues who share resources is a life changer, and I think in the years that I can say I did my best job at differentiation, it was really not because of anything that I did specifically. It was because I was part of a really great team, and so when that happens, I think it can be really easy to meet the needs of individual students when that’s necessary in a classroom, but the also just have like high quality whole group instruction for all the kids at the same time.
Kristen:
How do you feel about that, Nate, in your teaching situation?
Nate:
Yeah, Damien, I was gonna share some of the same thoughts that you just did. I think like the most effective work I’ve been able to do has been when I am not the only teacher in the room. The fact is, currently I’m teaching at an independent school where my class size is 16, and that makes it a lot easier for me to make sure every kid is seen by me every day, and I have my eyes on all of their work, but the school I came from last year I had 50 students that I saw every day, and of those 50 at least 20 were on IEPs, and those were only the students who had, you know, gone through the process of getting an IEP. There were other students who their families didn’t consent to the process or we were in the early stages of collecting data on them but we didn’t yet have a document to tell us how to properly accommodate our work for them, so I think the challenge is when you look at the scale of classrooms, particularly in under-resourced public schools in our country right now, the challenge becomes exponentially greater for the adult or the adults who are in the room to provide the sort of individualized support that we’re talking about while also meeting the least restrictive environment criteria that the IDEA has set out for American public ed.
Marty:
One of the things that I’m thinking about, Kristen, and I don’t know if this is crossing your mind as well, is as I’m listening to all of you talk, I’m obviously coming at it from a very different perspective, and I’m thinking about teamwork and I’m thinking about characteristics, and actually, Liz, I wanna kinda point this toward you, and this isn’t a question that we had kind of thought about ahead of time, but as you are looking and as you are preparing teachers to go into these classrooms, I am struck by the strength of mental health necessary for a teacher to go in and do this day in and day out and see frustrations and kinda keep moving forward—frustrations, whether it’s I’m not good enough as I wanna be, the standard that they’re setting for themselves or whatnot, the patience they need—basically what I’m asking is, how do you turn educators into Daniela, Damien, and Nate is really what I wanna know.
Liz:
First of all, we’re very honest about the fact that we are looking for people that are going to go into inclusive and diverse classrooms for the most part, so they should expect their students to have very different ways of thinking, very different backgrounds, different interests, different preferences. Then we also, in addition to that interpersonal characteristics, like patience, learning collaboration skills, so they can work well with colleagues, we also want them to be realistic about understanding how long it’s gonna take to become a master teacher. So one of the things that I’m surprised that hasn’t been mentioned yet is universal design for learning, which is a way for designing curriculum, and that involves presenting materials in different ways, giving students different ways to express them, the learning, and also different ways to engage in learning. So we barely much emphasize that; however, to really master that, even in one subject area, can take three or four years because you’re developing unit at a time for a very varied group of students, and so just to collect the materials, find the resources, figure out different alternatives that you’re going to make available to students is very labor intensive, and to pace yourself in order to do that.
Marty:
So, you mentioned labor intensive, and again, I’m kind of thinking of my own world where we talk about audio descriptions is something that is very labor intensive, or anything that we are producing from a video perspective can be much more labor intensive than sort of from a coding and web side of things. And I’m struck thinking about our educators on the call here, that one, when you talk about universal design for learning or even this level of differentiation—and I really put this up to any of the three of you, Daniela, Damien, or Nate—we already know that your schools are under resourced, and I’m putting that out there as my opinion. I feel like schools are under resourced period; we should put more resources in schools. But the amount of just person hours it takes to properly prepare and support some of the young folks that you’re working with, I mean, we’re talking about 12-hour days or more. How can we do this realistically at scale where we’re not gonna burn out before we ever become, as Liz said, the master teachers that they may be?
Liz:
Well, I can give you an example of what labor intensive looks like. So, I do remember way back in my teaching days we had a novel for the fourth grade, and it was really very challenging for some of my students who were still learning to read, and so I remember recording it all. It was on a cassette on that time, so they could listen to it on cassette, and also making an abbreviated version of this book as well for those students that wanted to be able to access it through reading. And that’s hours of work to do that. And so, yes, I’m very relieved when we do that book the following year and the following year and the following year because now I have that material for three years. I think it becomes challenging when there are so many other changes in curriculum that can you keep up with the curriculum, and I think then that’s when you have to say those certain topics, like in science we do states of matter. That’s probably gonna come up year after year, so that’s the area where I would put my labor and my work into if I was gonna create all these different options.
Marty:
Got it. Stability matters. Nate, and then Daniela.
Nate:
Yeah. Another big one I have to say would be just having strong administration who will set a vision for your team as to how exactly you wanna approach special education within your community, and making sure that those administrators have their eyes on what the ground looks like in the classrooms in their buildings, so seeing what the work is that each individual is taking on, acknowledging that work, acknowledging the shortcomings as well as the blossoms that come from it. So the other important point I would say is making sure those administrators are willing to include families in these conversations and making sure that families are understanding of the positive intent of the educators in this school and that we are all on the same team in supporting young people because many families across all lines of identity carry stigma around the idea of disability, and we need to be breaking that down for all families because whether or not one family’s individual child is neurodiverse they will be in a classroom with other children who are, and we all need to be able to come in and have those conversations openly and frankly so we can support one another in our learning communities.
Daniela:
So, not only are we under sourced but we’re also understaffed, and I don’t know if it’s the case with nondistrict-75 schools in New York City, but we have very difficult time finding—especially like if one of us is absent or a paraprofessional teacher, it’s hard to find somebody that will come in and take over. And something that’s not mentioned is the amount of money it takes. We receive funds, we receive $250 in funds every year. It’s called teacher’s choice, by the department of education, but it never covers fully the things that we need. Our population of students require hands-on interactive learning materials, and it’s super expensive, so I end up spending so much more than that, and I think it’s important to say that we definitely need some more resources like that.
Marty:
Thank you for that. Damien, I wanna give you room if you have anything you wanted to add to this question.
Damien:
Yeah. One thing that I was thinking about when Liz was speaking, so she was talking about this idea of how important stability is from year to year, and I think to run a school well, to have very well implemented curriculum, stability is important in so many ways. Liz mentioned the turnover of programs over my 16 years working at P.S. 148. We’ve had a variety of different reading programs come in and out, several math programs, and so when teachers invest a lot of time into creating resources and then the program changes, it can be very frustrating. At the same time, to Daniela’s point, staff come in and out, so if there are people who create resources and then may or may not share them before they’re out to a different school for a different reason, they might be excessed, they might retire, and so having stability is really important, and then from just a personal perspective, over my time working at P.S. 148 I’ve shifted around from grade to grade, so I’ve taught first, second, third, fourth, and fifth, and there have been moments where I’ve been like a fourth-grade teacher for three years in a row, and I’m like, I’m finally getting good at this, and then I find out like next year I’m teaching second, which when that happens it’s always a bit difficult. Now that time has passed, I feel like it’s been a blessing because I understand where kids are coming from and where they need to go, and right now I’m right in the middle. I’m in third grade, so this is like a sweet spot. Yeah, I just wanna emphasize the importance of stability, and I also was thinking as Liz was speaking about how the pandemic has recently affected things, so one interesting thing that I’ve found is during the pandemic everything was very tumultuous. Teachers went remote within a week, and teachers were really forced to digitize all of their materials and transfer the teaching that they were doing in person in a classroom to an online platform like Google classroom. It was incredibly difficult at the beginning of the pandemic, but I have to say, now teachers have this whole new set of skills and are much more prepared to differentiate when it comes to providing digital resources and then making things accessible through those platforms, so I’ll give an example. Now at my school post-pandemic, one of the ways that we’re expanding access to test prep lessons is the teachers are doing Zoom sessions during our Tuesday afternoon parent engagement time, and then occasionally in the evening, so this is sort of like oftentimes outside of the regular school hours, and then we’re recording the lessons and posting them on Google Classroom for students and their parents to access whenever they can. Daniela mentioned before the importance of the parent home connection, and so this has been a really good thing for our school because now that we have materials that are accessible not only to students digitally but to parents after hours, it’s added I think a really great way of enhancing education that nobody even thought of before the pandemic and before the idea of doing Zoom recordings of lessons online that can be accessed at a later time, so I just wanted to throw that in there.
Nate:
Could I jump in and build off Damien’s first comment too? Because connecting back also to what I had shared earlier about families and the importance of involving them in these conversations, I think it’s really important to think about how we are sharing knowledge about individual students from grade to grade, so you know, Damien talked about shifting from one grade to another, and you may end up having the same student more than one year in a row, which means that some of that legwork of getting to know that child and not only understanding their IEP but then seeing what specific supports that kid is gonna respond best to, that can get lost when the kid transfers to another school or even within the same school but to a different building or a different hallway, so thinking within schools about how we’re streamlining communications to ensure that those supports are being communicated from one educator to another can really lower the bar at the beginning of the year for getting a whole new group of kiddos in your room to be able to jump right into your work with them.
Marty:
Awesome. I think I need a break because this has been incredible. There are, for our listeners at least, and I hope that they are as equally as amazed and engaged as I am, I wanna just tease out a couple of things that I’ve been hearing, some themes that have been coming up with the group here. One is this idea of differentiation and individualization, so I think that’s really important. We’ve just been talking about stability and consistency. Another is teamwork, and finally sort of touching a little bit towards the end here on community versus isolation—I don’t know if that’s the right versus, but all of these things that all of you are talking about. I mean, it feels very education heavy, it feels very education specific, but from my perspective, and I hope from any of my listeners who are not in schools and not educators, that they’re seeing that there are direct parallels to the workplace in all of these different ways, and that’s the stuff that I kind of want to begin to tease out a little bit more, have some more conversation within our next segment when we talk a little bit about society. Before I do though, Kristen, is there anything that we missed that we really wanna get to before we move on in the conversation at all?
Kristen:
Oh my gosh, of course, yes.
Marty:
So go for it. Absolutely.
Kristen:
There always is, but there’s too much to talk about. Every comment could evolve into paragraphs and paragraphs. Anyway, what are some initiatives that you’ve all noticed specifically in New York, basically since the pandemic has started and is kind of petering out and evolving itself, for recognizing neurodiversity and really addressing it in a more organic way?
Damien:
So, one really concrete way that I think New York City has addressed this issue is Mayor Eric Adams, who has talked about being dyslexic himself, really pushed for universal dyslexia screening in schools, and I have to say that as a New York City public school teacher, I have seen the impact of this. Months after he took office, all New York City public school teachers were trained in being able to better identify students who may have dyslexia, and we also have started to do the screening within our schools, specifically with a program called Acadience, and so I think raising awareness about the idea of having students with dyslexia, which is part of this whole broader theme of neurodiversity in our classrooms. We definitely have way more awareness now than we did prepandemic, pre the election of our current mayor, so that’s a concrete example of something that’s pretty recent in New York City history.
Marty:
Is it too recent to know whether or not the numbers of students identified with dyslexia have really risen, or is it just that there are—so, has that helped, and do we find that, my gosh, to the resource question, sort of like, wow, we’ve really been missing the boat here, or is that just too early to tell right now?
Damien:
I think it is a little bit still too early to tell. I haven’t heard any statistics about any recent numbers, but I do know that all New York City public school teachers have been trained, and we’re currently doing screenings. There’s much better awareness in general of the idea that whether we know it or not we have students with dyslexia in our classrooms.
Marty:
You know, Nate, you had earlier brought up this idea of stigma and disabilities. I think Liz, you mentioned—we, a bunch of us have mentioned it, but dyslexia, it’s interesting that there’s sort of a push with dyslexia in particular because I think there’s been a lot of information over the years around very, very successful people, CEOs, entrepreneurs, billionaires with dyslexia, specifically because of some of the coping mechanisms that they needed to move their way through educational systems in life are the same sorts of transferable skills that make them incredibly successful down the road, and so I think it’s an interesting disability to kind of key in on at first to help people understand that you may have a disability, it does not necessarily limit future choices. Let’s figure out ways in which we can use your coping mechanisms, teach you new skills, build up your strengths in other areas and et cetera that can allow you to be moving forward in your life. I don’t know if there’s any other examples of kind of zeroing in to try to identify whether if you could do the same thing, the same initiative with ADHD or with autism spectrum disorder or with et cetera to be able to have IEPs for young people across the spectrum. Liz?
Liz:
Yeah, so autism has been addressed by New York State Education Department, and initially it’s about 20 years ago they made it a requirement for all preservice teachers to have some training in autism. Now, compared to what Daniela knows, this is very, very like surface knowledge just so that teachers do have an awareness of what autism is and when it exists, and New York State still does have an autism spectrum disorder advisory board, and I just checked to see what they’ve been up to recently, and they are moving with the times. They had a contest for a flag to represent neurodiversity, and the neurodiversity symbol is a horizontal infinity sign, and so now they have a flag for that in New York state, and you can also buy it on Etsy if you’re so inclined, so they’re definitely trying to keep up with the times.
Marty:
Kristen.
Kristen:
Yes?
Marty:
I want to talk about IEPs. Is that too big? Should we go into IEPs a little bit? Because we’ve been talking about individualization, we’ve been talking about—Nate has brought up parents and et cetera. Should we talk about or should we wait till the next segment?
Kristen:
No, let’s talk about it. Yeah, I think it’s good to kind of get an explanation about what are IEPs for those who are not in the education space day in and day out, which students benefit most from these individualized education programs, what is—which students are left out of them, and how are those students addressed.
Marty:
So, what is an IEP? Can someone give us a quick 30-second definition of what the heck an IEP is?
Damien:
Sure. An IEP is an individualized education program, and it’s a document that is cocreated with a team of stakeholders in that particular child’s life—the parents, guardians, all of the child’s teachers, and related service providers, and basically it’s a document that lays out the special education services that the child should receive and their individual goals to help them meet their maximum potential towards grade-level standards. It doesn’t necessarily only have to focus on academic standards. The goals can also include—as Daniela mentioned before, we works with students who need a lot of functional skills. It can include goals towards life skills, and the IEP specifically is given to students who have one of 13 disability categories as defined by the Individuals with Disabilities Education Act.
Marty:
OK, so I may think that my child should have an IEP, but if he doesn’t fall into one of those 13 categories, I’m out of luck.
Damien:
From like a legal perspective, I would say so, but if you have dedicated teachers who are aware of the idea of providing universal design for learning in their classrooms, they might have children with dyslexia or other forms of neurodiversity, then certainly hopefully parents can talk to those teachers and say, hey, my child may need accommodations or modifications because of their differences. So hopefully in that sense, it could be addressed, but from a legal perspective in order to receive services, and also in regard to funding that goes along with those services, a child has to have a diagnosis that fits into one of 13 disability categories.
Marty:
Gotcha. Daniela.
Daniela:
Damien, that was great. That was a good explanation. Just to add off of that, this document is so important because it travels with the student year after year after year, and as we had said before, there are rotating staff members and professionals that are gonna work with this student, ant hat is their leading document because it might also contain their behavior intervention plan and their functional behavior analysis, and it also includes if they are receiving occupational therapy services, speech services, if they are entitled to a bus paraprofessional; their strengths, their weaknesses in academics, physical social development, and any modifications that they make for in terms of learning and state exams or if they’re a alternate assessment, so it’s super important to read the document, and the leading members are typically the parents, and also if the student is able to, they should and could have a voice in the development of the IEP. So every time I acquire a new student, I always take the time to read it very carefully so that I can have a basis, but with that said, the IEP will give you the background information, but I’ve had several teachers in our discussion and come in planning, and they’re like, I read the IEP but I don’t really see it. He doesn’t really act like that with me, or he said something different than what it said, and I’m always like, you know what, it’s kinda like the rapport that you establish with the student and the relationship that you build, and if you don’t pair and you don’t acquire like instructional control, the document is not gonna serve much of a purpose. So it also depends on that individualized relationship that you have with your students.
Kristen:
Yeah, totally. I could see that. I mean, it’s so important to me when I’m working on IEPs to capture the story of the student, but then even when I do it and even when I make it very long, which some people hate, it still never will capture fully the student, which is frustrating and also good because the student should never be sort of the sum of their legal documents, you know? They should also be a person.
Daniela:
And just to add, students’ behaviors change, very often. Their needs, their interests, their desires, as do ours. Although the IEP will change the basis of it is so useful to study and to take note of.
Marty:
Liz?
Liz:
You also asked what about those students that don’t qualify for an IEP. What happens to them? So, we do have permission under the rehabilitation act for what we call a 504 plan, so for example if you’re a student with ADHD who is doing well academically, getting good grades, but still needs accommodations, maybe you need to be—do your testing in a separate setting or take frequent breaks, you can get accommodations under a 504 plan. The other big thing which is actually law in New York state is a system called Response to Intervention. So, if a teacher in a general education setting sees that a student is struggling, they are responsible for intervening and coming up with maybe another strategy or another resource to help that child succeed. They may also be able to call on the support of special education teachers or basic skills teachers. They may not be [inaudible 00:56:01] but it is a requirement that if [inaudible 00:56:04] teachers see that a student is struggling that they identify their needs and address it. That’s good news, and they’re not sort of ignored.
Marty:
Yeah. Nate.
Nate:
Yeah. Just building off Liz’s comment there, I also wanna acknowledge on like a practical level in my experience, I brought up already the importance of families and the importance of community partnership, and part of why I say that is both IEPs and 504 plans do require parent or guardian consent to evaluate the child and to provide the services. Now, educators can provide accommodations that they feel are appropriate, but in order for that to be documented, which as Daniela mentioned is so important for educators to share knowledge across classrooms, you need the family to be partnered, and in a lot of cases several students that I have worked with, we haven’t been able to see the process all the way through because we lacked family support, which was part of why we need to work on destigmatizing these conversations and making it clear that IEPs are not labeling children as something; they’re there to provide and ensure that legal supports are being offered in every classroom that child enters, and it’s to hold the educators accountable to make sure they are aware of those child’s disabilities and that they know what accommodations that child is entitled to in order to support their learning.
Marty:
When does the IEP and 504 plan, when does that stop following them? Is it high school? College? Workplace? Because frankly, from an HR perspective, I would really love to know someone’s IEP, like they had real support plan and individualization if I could make their lives better in work, wouldn’t that be great. I’m someone who needs more time on a test. You don’t get high stakes deadlines. Let’s make sure that we give you work that allows you to do your best. So when does it end?
Nate:
IEPs come with specific goals that are set by the team for the student to reach to show that the accommodations are working, and so they’re tested throughout the year to see their progress toward those goals. If they reach those goals, maybe their goals will change during the next IEP cycle, so students could phase out of an IEP if they start to show progress that they weren’t showing before. If not, it’ll follow them all the way through their public education experience, but many students may transfer from a public school to a private school, and in that process the documents may get lost. I’ve had—I’ve taught students both in public schools and at my current independent school where their IEPs they had at one point, and it didn’t for one reason or another end up in their file when they ended up at the new school, so it’s not a perfect system, and it is very much driven by people, and so it is fallible, unfortunately. And as for your second point, Marty, about why can’t it follow us all the way through our lives, I think something that worries me would be that I’ve had families come up to me and say part of why they didn’t share their students IEP when they applied to an independent school is they were worried about the admissions committee at an independent school stigmatizing their child for having a disability, which of course is illegal. They shouldn’t be doing that, but there’s no way to prove that intent, and so many families may choose not to hold on to it, and I think the same concerns come up in the professional sphere if suddenly a job application required you to disclose whether you had an IEP as well. So obviously policies are all in theory well intended, but they are applied by people in different levels with different levels of education and experience around the issue of disability and working with people with disabilities, and so without the ability to prove intent, it’s really hard to say that those are gonna be followed the way they’re intended to be.
Kristen:
And then, you know, the IEP will typically be phased out after the student leaves their secondary school. If they stay in public school or a special education program the whole way through, the document will not really follow them to any postsecondary experience, so whether that means college or employment, that’s usually when the document phases out, and again, kind of for those same reasons, and even when you get to college, the whole disability identification process changes from IDEA to—it falls under ADA instead, and there are slight differences to the ways those are implemented, and the student has a lot more power or theoretically are more at the center of disclosing their disability, or they don’t have to, and there are pros and cons to that change.
Marty:
And to Nate’s other point about discrimination, you’ve written about that in some of the content at TammanInc.com, some of the blogs that you’ve written around the fact that disabilities are still something that is very hard to prove that someone wasn’t discriminating against you when you walk in and you’re seen as blind or deaf or what disability you may present with. Holy smokes. Just so much more, and again, the themes for me, just kind of keeping pulling things out, on top of the ones I already mentioned, just this idea of stigma and awareness that came up a bunch of times, and that relationships matter. All of the things that you’re talking about, I can’t stress this enough with all of you, and where I really wanna take this conversation—again, because most of our listeners are not educators necessarily, although after this one we may have a lot more—is the idea that all of these things that you’re doing both as professionals but also with your young people, I think there are direct implications in society and things that we need to kind of work on and do more of, so I am so grateful to all of you.
Marty:
Thank you to Damien LaRock, Nate Stauffer, Liz Finnegan, and Daniela Arcuri. I appreciate all of you spending time with us today and sharing your insights, this was really great. To our listeners, this was such a great conversation. We weren’t able to get to everything, so please, be on the lookout for part two of this conversation, where we get into more societal, and workplace intersections with neurodiversity. If you like what you heard, or if you disagree with something you heard, let us know and help us grow the pod. Give us 5 stars and a good review, wherever you’re listening today. You can also find us across all social media at “tammaninc” and through our website “tammaninc.com”. That’s T-A-M-M-A-N-I-N-C.com. There you’ll find all of our thought leadership on all things digital accessibility, and more. You can also sign up for our newsletter, so you never miss a beat with us. Thank you so much for listening.
Show Notes:
- Link to Kristen Witucki’s website
- Link to WCAG, web content accessibility guidelines
- Link to Autism Spectrum Research Committee
- Link to Judy Singer who is Australian woman who self identifies as neurodiverse
- Link to Tamman podcast about “who are we leaving out”
- Link to No Child Left Behind
- Link to Universal Design for Learning information
- Link to NYC Mayor Eric Adams Universal Dyslexia screenings
- Link to CEOs, entrepreneurs, with dyslexia success stories
- Link to IEP examples (Individualized Education Programs)
- Link to Tamman blog on disabilities in the workplace
