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The Unique Experience of Black Students with Autism and their Families: A Conversation with Jamie Pearson · DiveIn: Diving into Special Education's Most Complex and Pressing Debates

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  This is diver podcast about diversity,
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  equity and inclusion in special education research.
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  I'm your host, Federico Beitholler, associate professor
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  at the University of Illinois and Chicago and board member of
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  the Division of Research of the Council for Exceptional Children.
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  Welcome, welcome, welcome. Welcome to our show. Today is
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  our second episode of our second season.
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  Today we have a very unique show about a unique topic.
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  But before we get even started, I want you to remind you that
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  you still have time to nominate some of your peers for the division of
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  research awards. Particularly, I want to highlight two awards
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  that are related to issues of equity and
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  diversity and inclusion in special education. And those are the distinguished
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  researcher from underrepresented groups award and
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  the research improving educational access, experiences and outcomes
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  of BIPOC students with disabilities.
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  So we have two awards. I'm sure you know someone who's doing amazing
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  work, and they will fit the profile of these awards. So you have until November
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  1 to nominate your peers,
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  and then they will receive the award. The selected ones will receive
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  the award in our next
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  CEC annual meeting in Baltimore in 2025
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  in March. So now back to our show. As I told
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  you, we have a unique show today. The show today
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  will focus on the experiences of black students with
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  autism. And for that, we interview Jamie
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  Pearson, who is an associate professor at North Carolina
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  State University University.
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  Jamie, doctor Pearson and her PhD in special education at
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  the University of Illinois and Urbana, and her work developing
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  programs to increase activism
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  and advocacy for black parents of students
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  with autism. We have a fabulous interview in,
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  where we talked to her about the inequities in regards to access to
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  services for black students with autism. We also talk about the
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  experiences of those families in their communities, and also
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  very important. I thought it was very interesting. You'll see. We discussed some of the
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  tensions that emerge on ABA programs, particularly when it comes
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  to black students. All right, so here's the interview.
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  I hope you enjoy it and you learn a lot.
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  Thank you, Jamie, for being here with us. It's a pleasure to have you with
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  us and talking about this important topic. Thanks so much for having
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  me, Fabrico. I'm really glad to be here. Yeah,
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  we're glad that you're here. I think you're going to provide us great insights for
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  our audience. Now, I wanted to start with a
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  broad question, right? Because we,
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  of course, special education always been a lot of discussion about teens with autism,
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  but you focus specifically on black families. So I
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  want you to give us, you know, the landscape of what are the
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  major equity issues regarding services for black students with
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  autism. Sure. So I've been doing this work for,
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  you know, 13 or 14 years now. And one of the things that we've learned
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  over time is that black autistic children and their families face a
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  number of disparities when we think about access to services and early
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  diagnoses. And so one of those critical sort
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  of equity issues regarding this population is that oftentimes
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  the time from caregivers sort of presentation of initial concern,
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  right, where a parent is saying, I think I'm seeing something different here.
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  I think I'm seeing some regression and skills. The time from that initial concern
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  to the point at which black autistic children are identified or
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  diagnosed is often, you know, two or three times longer in some cases
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  than that for white children. And so that's one
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  of the major issues we see in terms of those inequities.
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  We also see that black autistic children are. Can sometimes be diagnosed
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  with other disabilities first, like oppositional defiance disorder,
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  other behavioral disorders. Sometimes they'll catch the
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  learning disabilities, but not necessarily capture the cultural nuance that
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  is sometimes embedded in autistic characteristics.
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  And then the third thing I'd say is that black autistic children
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  who have co occurring intellectual disability are
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  more often are more likely to be diagnosed. So when
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  we have black autistic children without that co occurring disability, co occurring
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  intellectual disability, they tend to be a little lost in that diagnostic
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  process. Wow, that's very interesting. You know,
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  I want to do a follow up question to the second reason you said.
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  Why do you think. I mean, I can have many
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  hypotheses about this, but why do you think they're more
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  likely to be identified with a behavioral disorder than
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  autism for. That's the case for black students? Yeah,
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  absolutely. I think a big part of that is practitioner
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  bias. Right. We all have implicit and explicit biases. And I
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  think when black autistic children are going into see providers
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  or seeking diagnoses, that there are biases
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  that shape how providers view and interpret behaviors
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  in children of color. Right. And so, more often than not,
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  there's an association with behavioral disorders and
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  black children than autism. And so I think that, you know,
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  is a. And there have been a few studies that have pointed to that.
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  Right. So I think that's a major factor that contributes to that particular
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  disparity. Wow. And do you think that could be a contribution
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  for what we usually know, you know, that disproportionate representation of black students and
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  emotional behavioral disorders, in contrast to usually the
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  under representation and service with autism, with that play
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  on that dynamics, absolutely. I think that that gets exactly
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  at that point, right, that practitioners and providers are
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  more often diagnosing students with EDD, for example, as you said.
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  And sometimes there are those co occurring diagnoses.
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  Right. But in many cases, the providers are missing the autism
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  because of the biases that we hold around. What does a
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  child with a behavioral disorder, quote unquote,
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  look like? Right. For many people, we have this standard
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  sort of historical image of a, you know, blonde hair,
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  blue eyed white boy who is autistic. And I always do this activity
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  when I do presentations and have people do a Google image search. And it's gotten
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  a little more diverse over time. But even for providers, there's that sort
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  of image or expectation that autism is white and
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  male. Right. And when it's not, that, there's this assumption that,
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  oh, this can't be autism in this black autistic girl, for example.
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  Wow, that's so fascinating.
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  And the other follow up question is going to do this access to services,
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  access to timely diagnosis and services that has
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  anything to do with some geographical distribution of services
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  and how black communities and those living residential and civilian residential
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  areas, due to a long history structural system of how
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  cities have been developed. Absolutely. So there are a number of, like,
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  systemic factors that shape kind of that access to services.
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  But geographical location is a big part of that. You know,
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  like, for example, I live here in North Carolina. We have three or four sort
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  of larger, more metropolitan urban areas,
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  but then we have a very widespread numbers.
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  Several counties and communities are very rural. I grew up in one of
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  those small rural areas. And so for black families that live
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  in those more rural communities, they are much longer wait
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  lists. They often have to travel across several county lines,
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  sometimes depending on where they are in a particular state. They might even drive
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  across state lines to get access to services. And so I think there
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  are definitely some limitations in terms of their ability to
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  access services in those more rural spaces,
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  geographical locations. But then even in the more urban
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  spaces where we have more access to services, the waitlist
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  are so long. Right. And so unless you
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  have the social capital to be able to sort of finesse your way up the
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  waitlist that some people might have, you could be on those waitlists
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  for a year or so before you're able to get a diagnosis
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  or get an initial evaluation for your child. And so I think
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  there are both pros and cons to being in both of those spaces.
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  But we especially see those disparities for families who are in rural communities
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  who are in some ways disconnected from any autism support.
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  Wow. You know, you kind of answer. At least
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  now you kind of answer these questions that I'm gonna
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  ask you now. But I think I'm gearing towards more about the experiences
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  of black families of children with autism. And you focus on black
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  families with autism. So one of the questions I have, how are they so
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  different, those experiences from, for example,
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  white families of students with autism? They have different experiences when
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  they are in their communities, when they
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  have experiences with the schools, et cetera. Yeah. So I
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  think one of the reasons that the experiences
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  for black families broadly, like supporting family
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  members or loved ones with disabilities, part of that just sort
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  of broad experience, is connected to our history
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  of segregated schooling in the United States. It's connected
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  to our history of distrust with healthcare systems and providers.
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  Right. Like, when you think about things like the Tuskegee syphilis
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  study, right. That has created distrust in black communities, and it's
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  connected with a history of stigma around disability.
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  Right? And so for many black families, having that combination
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  of. Well, you know, I remember when I had an uncle
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  or someone who was trapped in schooling. Like,
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  there's some fear around what it means to be disabled or means to
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  be autistic. And so I think that is a particular experience for
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  black families that, as it creates some cultural nuance,
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  right. To that experience for them. Another example
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  is that oftentimes, black families raising or supporting autistic children
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  or loved ones don't see themselves when they go to
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  a support group. They don't see themselves when they reach
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  out and look for literature when they're doing a Google search and trying to understand
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  more about autism. There's not a lot of racial ethnic representation
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  that reflects their own experiences. And so sometimes they think, well, oh, this.
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  Autism isn't a black, you know, experience. It's not a disability
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  that impacts the black community. Right. And so
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  I think that definitely plays a role as well.
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  Wow, that's fascinating. You also have an article about
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  their experiences, for example, in church. I think. Yes. You know,
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  one of the things that I love about this podcast, I get to read great
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  work like yours, and other people have interviewed and learned new things, but can you
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  speak a little bit about, I don't know, that article about their experiences in church,
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  in their communities? Sure. So, you know the work
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  we've been doing over the years with black families supporting autistic youth,
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  particularly here in North Carolina. Right. I'm in the Bible Belt, and so we
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  interact with many black families who also identify as christian.
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  We have other families who are believers and are people of faith
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  from other religious backgrounds, but primarily christian families who have
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  really had to reconcile their religious
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  beliefs and their sort of understanding
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  of disability and neurodiversity. And for
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  some of them, families and parents in particular,
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  have made meaning of their child's disability based on their religious
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  beliefs. For example, I've had a number of mothers, probably at least a half
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  dozen black mothers, who said, my child
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  has autism or has a disability because of a sin I committed
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  in the past, right. And that they felt like that was them
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  sort of paying for it, for that sin, right. Other families view
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  it as a gift and that, like, you know, their belief
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  in God. They believe that God is entrusting them to support and
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  caregive and raise a child who might have more support
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  needs than, you know, a child without autism,
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  for example. And so families feel it in different ways.
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  The third thing I would say about the church in particular is
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  that for many black communities, the black church
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  is a primary source of community based support, right.
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  Not only do they go to church for sort of like, you know,
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  prayer and revitalization and those things,
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  but also it creates community for many of these people.
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  And so we've seen some families who experience that in a positive
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  light. They have exclusive children's
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  church spaces. They feel welcome.
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  You know, it is a space of belonging. And then we've seen other families
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  who don't go to church anymore because they didn't feel welcomed
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  or even their faith leader said, if you can't manage your child's behaviors,
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  you can't be here. So we've seen the spectrum of experiences
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  in the black church. But it's interesting, though, because even for
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  families who feel like they've been shunned from their place of worship,
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  there's still this, like, yearning to
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  be there and to be connected and to find ways to stay connected with that
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  space. Wow. I mean, all these
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  insights that you're sharing with us, it really, really make
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  a case of thinking that these experiences are
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  unique and that is significant to
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  just focus our research on those particular experiences. Thank you,
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  Jamie. And this is related to this other question
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  I'm going to ask you, because one of the things that I read in your
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  work that you mentioned in some of your articles, the lack of attention,
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  especially education research, to these intersections of autism
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  and blackness, what do you attribute this limited attention?
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  Yeah, I mean, honestly, one of the things that I think has contributed
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  to the lack of attention to the intersections of race and disability
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  is the limited representation of researchers and
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  scholars of color. I will say, you know, in the time that
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  I've been in the field. I've seen many more colleagues and scholars
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  of color who are now in special education or disability studies
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  or psychology in those fields, which is exciting and encouraging.
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  But, you know, when I first started this work, it was very limited. I found
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  myself citing some of the same folks who've been doing this work. And so I
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  do think that it requires some representation
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  in the field to ensure that we're sort of reaching those
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  populations that have been historically marginalized and historically overlooked
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  and face a number of disparities. So I think that plays a
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  role in it in terms of having researchers in the
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  field to engage in research among those populations.
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  The other thing I would say is I worked on an
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  article with Steinbrenner a couple years back and a number of other colleagues
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  from Frank Porter Graham, where we looked at the experimental
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  studies that included students, the rate at which studies were including
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  the racial and ethnic background or demographics of their participants.
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  And we found these were specific to autism studies, that nearly
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  three quarters of those studies of over 1000 studies didn't report
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  the race for ethnicity. And then when they did, most of
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  the participants were white. Right. And so there's
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  a great need to have more concerted and intentional
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  effort to effectively recruit racially
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  and ethnically diverse samples for our research.
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  Absolutely. That's an area that in our
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  research, this needs much more attention. And your worksheets came
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  to address those limitations.
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  One of the projects you've been engaging in different research projects, you've been
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  very well funded. But one of the ones that grabbed most my attention,
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  that interests me the most is the project faces,
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  that where you work with black families,
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  for them to become advocates and be able to receive
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  and ask for the services that they need. Can you speak a little bit about
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  that project? Yeah, sure. Faces is, I always call it my baby.
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  I design faces as a doc student with my dissertation project.
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  So it stands for fostering advocacy,
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  communication, empowerment, and support. And it's a caregiver
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  advocacy program designed specifically for black families. It was
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  designed with black families and black autistic children in mind,
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  with culturally responsive and really intentional
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  pieces and components of the intervention. And so it
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  is delivered in person for five weeks. So families
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  come together once a week for five weeks for about three to 4 hours
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  per session. And we focus on different content, such as,
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  what does stigma look like in black communities? How do we address
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  that stigma? Right. How do we build information around autism
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  and disability broadly? How can families
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  and caregivers build and create effective
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  partnerships with children's providers, with their family
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  members, healthcare providers, or educators.
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  Right. And then how can they support their children themselves?
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  How do they implement evidence based practices that
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  will support social communication or perhaps reduce interfering behavior?
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  So we try to provide them with, like, I call it, a toolbox. Right.
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  Of tools, tips, and skills that can not only help
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  them become better advocates, but that can connect them to community based
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  services that helps to build a community of support for them
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  and ultimately impacts positively the
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  outcomes and quality of life, both for the autistic
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  child and for the family unit. Wow,
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  that sounds fascinating and so much
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  needed. Can you pick one thing that you will share with the audience that
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  was the thing that shocks you or strokes you the most that you learned from
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  this project? Absolutely. The biggest thing, and probably
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  the thing I'd say I'm just most proud of, is a sense of community that
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  each of our cohorts build. So every time we run faces,
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  the families that participate in faces, they come away from
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  this, and they have ongoing connections. They stay
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  connected with each other. They have social groups and with their children,
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  we'll have social groups together. You know, they continue to rely on
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  each other and support each other, even in the absence of the research
• 18:39
  team. Right. And so that is one of my, you know,
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  one of the things that stands out to me most is that faces builds a
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  sense of community that is long lasting for many of our families.
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  Wow, what a great life lasting
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  impact that they have on the families. That's amazing.
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  You know, I want to take a little bit out of your work and ask
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  you more, a broader question about the field
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  and some of the tensions that are going on with Aba.
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  Particularly there's been in the
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  last years of pushback against Apa, arguing that
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  the practice is punitive,
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  that is trying to delete students identity, that they're
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  trying to change the students without distance from who they are.
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  So how do you respond to those critiques?
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  Sure. I mean, I think I would start by just recognizing that my
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  own sort of introduction to the field was in sort
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  of an ABA based home program. Right. That was my
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  initial introduction to the field of special education and
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  disability studies. And so I fully recognize,
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  you know, how I have been involved in that work in
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  the past. And to that point, you know,
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  I see and understand that for some families, Aba is
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  socially valid. It has particular meaning and utility
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  and usefulness. Right. Many families have reported that Aba
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  has changed their child's lives in terms of being able to communicate or
• 20:10
  in terms of reducing self injurious behavior. And so from
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  my perspective, I think it is important to recognize
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  that families see value in that and that families have the autonomy
• 20:22
  to kind of speak to what is most useful and helpful for them.
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  However, I also fully recognize and respect the neurodiversity
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  movement, and I value highlighting
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  and again, respecting the voices of autistic and neurodivergent folks
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  who say, you know what, Aba has been punitive for me,
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  or it has negatively impacted my life. And so I
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  think we are able to hold space for both of those. I think it's
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  a highly contentious topic, and folks feel like you have to choose one
• 20:53
  or the other. The other big thing for me is, like, it's important for people
• 20:57
  to understand that ABa and includes a number of principles.
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  Like Aba itself, is not one evidence based practice necessarily.
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  Right. There are principles of ABA that many of us use every day without
• 21:08
  thinking about, such as reinforcement, positive reinforcement. Right.
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  So when you break it down and sort of think about what behavioral
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  principles can I use within this paradigm that are effective,
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  you know, there are ways to sort of separate those. So,
• 21:23
  again, I think it's important to recognize that for some families,
• 21:27
  there's some social validity, and that for some disabled
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  folks and neurodivergent folks who have experienced Ava, it has been extremely
• 21:35
  traumatizing and damaging. And I think we have to recognize both of
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  those experiences. Wow. And how do you think
• 21:42
  that layout articulate the history of black families?
• 21:46
  Right. Yeah, that's a great question.
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  You know, one of the things I've heard from black families in particular is
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  that for black families, when we think especially about, like,
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  you know, autism, still right now, we're still looking at about four to one boys
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  to girls. And so for black families and parents who are
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  concerned about black boys in particular,
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  experiencing, having experiences with
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  law enforcement and police, there's a lot of fear around, you know, if my
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  child is engaging in, you know,
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  what behaviors that might seem unusual, how will
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  that be perceived? What might their interactions be with the police?
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  Will certain behaviors be perceived as illegal or
• 22:29
  aggressive, et cetera? Right. And so some black families have
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  said Aba has been helpful because it has actually helped
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  my child assimilate to a white supremacist culture, that we
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  help them to assimilate to what should be expected of them,
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  to be sort of majority expectation of what appropriate
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  behaviors might look like, whatever those are. Right. But so to
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  that end, I think black families have often argued like it is
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  necessary. And they also recognize some of the trauma that
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  maybe has been caused in some spaces, but that they feel like without
• 23:03
  Aba, they're not sure how to reduce
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  extreme or self injury behavior and or how to have
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  their child be able to live and flourish
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  successfully or happily in a space that in
• 23:18
  many cases doesn't, where they don't feel appreciated and feel like,
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  you know, their children may not be valued or heard.
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  Yeah, I mean, you're bringing some very interesting tensions and contradictions,
• 23:30
  I think, within the field. I mean, because it's not, I don't think just assimilation.
• 23:34
  It's most sometimes maybe just give them some tools to be able to
• 23:38
  survive, period. Right. We're talking about people getting shot.
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  So it's like she's tools to be
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  able, unfortunately, to survive in a very violent,
• 23:48
  white supremacist context.
• 23:51
  Exactly. Absolutely. Well, thank you for your
• 23:55
  explanation on that and bringing those tensions. You know, I want to move to
• 23:58
  some for you to share some of your wisdom and give
• 24:02
  some advice. So I want to start with the
• 24:05
  first question. This will be three questions. Can you give
• 24:08
  three pieces of advice to a state or district official or principals
• 24:13
  to increase access to services for black students with autism?
• 24:18
  Sure. You know, thinking about this question, you know,
• 24:21
  from the perspective of principals, for example,
• 24:26
  I think schools are doing as
• 24:30
  good as they can at partnering with families. But I see
• 24:33
  over and over again that there's often a disconnect between
• 24:38
  family partnerships at a school level, with the
• 24:41
  teachers, with the educators, with the IEP teams. And so I think
• 24:46
  for principal, thinking about strategies,
• 24:49
  techniques that can support stronger family
• 24:53
  to school partnerships where they are
• 24:56
  able to create a space where families feel a sense of belonging and where they
• 24:59
  feel welcomed is a critical thing.
• 25:02
  Another piece for both, I guess, principals and district leaders is just working
• 25:06
  to recruit, again, more racially ethnically diverse
• 25:11
  educators who both see
• 25:14
  but also reflect the diversity of the classrooms that we're
• 25:18
  teaching in. And I think that's a critical need. And I will say
• 25:22
  not just recruiting them, but retaining them because we know in our field
• 25:25
  that it is hard to retain special educators. Some of
• 25:29
  that is much more systemic. Right. Than we necessarily
• 25:32
  have control over when it comes to funding and how we
• 25:36
  little we pay teachers. So I fully recognize those are some additional systemic
• 25:40
  issues. But I think for principals to be able to recruit and
• 25:43
  think about effective strategies for retaining those teachers is critical.
• 25:47
  And then at the state level, one piece of advice I have is that we
• 25:51
  think about not only funding structures, but other mechanisms to
• 25:54
  better support access to early intervention. Our early
• 25:58
  interventionists are often overbooked and overwhelmed,
• 26:02
  and many families struggle,
• 26:05
  particularly when we have black autistic children, if they're lucky
• 26:08
  enough to be identified while they're still in the early intervention window.
• 26:12
  There can be some tensions around the cultural responsivity
• 26:16
  of early interventionists who are coming into the home. And so I think from that
• 26:20
  perspective, we need more training around culturally responsive early intervention
• 26:24
  practices, but we also just need more funding to better support families
• 26:28
  who are receiving early intervention services. Wow.
• 26:32
  Great pieces of advice. You know, and I want to stop and say that regarding
• 26:36
  what you said about recruiting and sustaining teachers
• 26:40
  of colors, or percents, we had a great. Our last episode was with
• 26:43
  Celisa Bettini talking about exactly that,
• 26:47
  how to recruit retaindev and how to diversify
• 26:50
  the special education workforce. So if you're in our audience that
• 26:54
  want to know more about that, just listen. Our prior episode with Elizabeth Bettini,
• 26:59
  another question I have for you is for researchers. So we talked about principals
• 27:03
  and school officials. The second one is about researchers.
• 27:07
  What three pieces of advice do you have for special education scholars?
• 27:10
  Who wants to research equity issues in a special education?
• 27:15
  Yeah, you know, this. This. I like this question a lot because this
• 27:19
  is near and dear to my heart. I really appreciate and value the research that
• 27:23
  I get to do. But I also am excited that I get
• 27:26
  to recruit racially ethnically diverse scholars,
• 27:29
  gender diverse scholars, neurodiverse scholars. And I think that requires
• 27:34
  a commitment from. From folks in the field to
• 27:38
  collaborate with black autistic and or neurodivergent
• 27:42
  scholars and scholars from other marginalized communities and
• 27:45
  identities. Right. We have to have a commitment to collaborating with
• 27:49
  researchers to reflect the needs and the experiences of the populations
• 27:53
  that we're engaging with in our research. And so having a research
• 27:57
  team that is diverse in that way, I think
• 28:01
  it creates a space, again, where families want to engage
• 28:05
  or participate in your research, where they see themselves in
• 28:09
  the work that you're doing and understand that. I think
• 28:12
  the other thing I would say is
• 28:17
  engaging in research with and not on communities
• 28:22
  that have been historically marginalized. I think a lot of times,
• 28:25
  families feel that they have,
• 28:29
  you know, that folks are, like, constantly reaching out for them to participate
• 28:32
  in research, and they don't necessarily feel like they're a partner
• 28:36
  in that. Right. And so I think it's really important that we engage with
• 28:41
  families or with marginalized communities, with autistic folks
• 28:45
  and black autistic folks in particular, so that their voices are amplified
• 28:49
  and represented in the work that we do.
• 28:53
  Thank you, Jamie. Just to recap, it's just like, bring very
• 28:58
  denogenous research teams where they represent multiple voices. Wherever I
• 29:01
  families can start participating, families can see reflected and have more
• 29:06
  comfort with working with people
• 29:10
  from underrepresented groups and also do research
• 29:15
  with rather, on communities. Those are great pieces
• 29:18
  of advice. And my last question is, if you have
• 29:22
  to dream, what would you like to see in the next five years regarding
• 29:26
  equity and inclusion in special education research?
• 29:29
  That's a good question. You know, I think my answers are probably, I've kind
• 29:33
  of, kind of hinted at some of them throughout our conversation so
• 29:37
  far. But I would say, you know, if I could dream, I'd like to see
• 29:40
  more representation in our special education teachers in the
• 29:43
  field in terms of racial ethnic diversity,
• 29:47
  gender diversity and neurodiversity. Right. I think it's empowering
• 29:51
  for neurodivergent or disabled students to see
• 29:55
  neurodivergent and or disabled teachers in the classroom.
• 30:00
  Similarly, we need more representation and special education faculty and
• 30:04
  researchers, folks who are doing this work in this space
• 30:07
  need to be more racially, ethnically, gender and neurodiverse.
• 30:12
  And then I would love it if we, you know, I was trained in special
• 30:15
  education. I come from a medical model of disability and fully
• 30:19
  recognized. That is kind of the root of my training.
• 30:23
  But I would love to see our field move away from this deficit orientation
• 30:28
  around disability and really grow
• 30:31
  to understand and appreciate the literal neurodiversity
• 30:36
  of our population. And I think understanding that
• 30:39
  and then modeling that for others will, I think, help to sort
• 30:43
  of reduce some of the stigma that we see around disability.
• 30:47
  And, yeah, I think
• 30:50
  that's a big piece. And then finally going back to
• 30:54
  what I mentioned earlier was just more representative samples in our research, ensuring that
• 30:58
  we are intentional about having more
• 31:02
  representation in our research studies.
• 31:06
  Thank you, Jamie. Those are great piece of advice that I think our audience
• 31:10
  can think and incorporate in their own work. Well,
• 31:13
  I want to thank you so much for being here with us. This was a
• 31:16
  fantastic and rich conversation and I wish you best.
• 31:20
  Thank you so much. I'm so glad I could be here and I appreciate it.
• 31:23
  Thank you.
• 31:30
  Thank you for listening to dive in, a podcast about equity,
• 31:33
  diversity and inclusion in special education research.
• 31:37
  This episode was produced by me, Federico White. Dollar will contribute
• 31:41
  contributions of Tasia Gonzalez, Kelly Carrero and
• 31:44
  Haya Abdela Cliff, I hope you enjoyed the episode and learned as
• 31:48
  much as I do. Take care and I see you next time.