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Why are autism diagnoses becoming more prevalent?

| 30 minutes | Media Contact: University Communications

Summary

Why has autism become more prevalent? And what’s the difference between autism awareness and autism acceptance?  

Guest: Allison Peart, Director of the Autism Assessment Evaluation Center at Central Michigan University.

Summary 

In this episode of The Search Bar, Allison Peart, Director of the Autism Assessment Evaluation Center at Central Michigan University, discusses autism and its changing definition. Autism is a neurodevelopmental disorder characterized by challenges in social communication and interaction, as well as restricted repetitive patterns of behavior. The diagnostic criteria for autism changed in 2013, with all previous diagnoses being lumped together under the umbrella term of Autism Spectrum Disorder (ASD). Asperger's Syndrome, for example, is no longer used as a separate diagnosis. The understanding of autism has evolved to recognize the vast spectrum of abilities and challenges that individuals may have. The use of terms like "high functioning" or "low functioning" is discouraged, as they do not capture the complexity of an individual's strengths and challenges. The conversation also touches on the importance of person-first language versus identity-first language when referring to individuals with autism. Applied Behavior Analysis (ABA) therapy, a commonly used intervention for autistic individuals, is discussed, with a focus on the importance of prioritizing meaningful behaviors and individual needs rather than trying to conform to neurotypical standards. The increase in autism prevalence is attributed to increased awareness, reduced stigma, and improved access to services. The relationship between autism and ADHD is explored, with approximately half of autistic individuals also having an ADHD diagnosis. The interview concludes with a discussion on the services available for individuals with autism, including evaluations, therapy, and support. Autism Acceptance Month is highlighted as a time to promote inclusion, respect, and belonging for autistic individuals. The importance of educating children about autism and fostering acceptance from a young age is emphasized. 

Transcript

Chapters 

    Introduction

    Allison: A lot of different self-advocates with autism or ADHD or other kinds of disorders have really paved that way, and really advocated for certain accommodations or just small differences that they have said would really make the difference for them in their school day, just to make school a little more comfortable or a little more tolerable for them.

    Adam: Why has autism become more prevalent? And what's the difference between autism awareness and autism acceptance? Welcome to The Search Bar. I'm your host, Adam Sparkes, and on today's episode, we are talking all things autism with Allison Peart, Director of the Autism Assessment Evaluation Center at Central Michigan University. Hi Allison. Thanks for being here today.

    Allison: Yeah, thanks for having me.

    Adam: Excited to have a good conversation to, kind of, kickoff Autism Awareness Month.

    Allison: Yes, very exciting.

    Adam: Or Autism Acceptance Month, which we'll actually — we'll get into. So that's kind of a name change there. But I thought we should probably start by defining what autism is and maybe how that definition has changed in recent years, too. I think our understanding of how to identify autism isn't really the same as it was 10 or 20 years ago, correct?

    What is autism?

    Allison: Sure. Yep so, autism is a neurodevelopmental disorder, meaning that it is associated with differences in brain development, essentially, and it's really characterized by two main categories of symptoms. So that first category is challenges with social communication and interaction, and the second one is restricted, repetitive patterns of behavior, activities, or interests. So, those are, kind of, the two main areas that an individual would be looking for when conducting an autism assessment. But like you said, it's changed a little bit over time. So, within the last, about, 11 years or so, things have changed. So, our diagnostic and statistical manual, the DSM, is what we use to, essentially, see what are the criteria for a diagnosis like autism, or ADHD, or any of these other diagnoses that we may be considering. And for autism, those criteria changed in 2013. So, we used to have four different diagnoses, and then those four different diagnoses have all been lumped together at this point under this umbrella term of autism spectrum disorder, or ASD. Or some people just refer to it as autism.

    Adam: And that's — I think, probably, the most ‘in the zeitgeist’, or the most pop culture reference, that has kind of — people still use it, but it's went away — is Asperger's Syndrome. Right?

    Allison: Right.

    Adam: So, we don't really use that as a particular diagnosis anymore. Is that correct?

    Allison: Correct. So, that's not in the DSM anymore, for example. That's one of those four different specific diagnoses that has now lumped under that autism spectrum disorder diagnosis. So basically, what happened is there are all these different terms that people were using, and those terms were all related in a lot of different ways, and folks decided let's put those all together rather than having all these separate diagnoses that have, basically, the same essential criteria going on. So, at this point, we don't use Asperger's to describe an individual's symptoms. We would just say that they're on the autism spectrum.

    What is the appropriate language to use when talking about an ASD diagnosis?

    Adam: It feels like, and correct me if I'm wrong because I'm making an assumption here — it feels like it's one of these things where, I think, people — Asperger's was a thing for a long time where it was, kind, of a high-functioning autism, at least in the minds of someone like myself who doesn't know how that's diagnosed. Or even a savant type thing, which is, I think, one of those things in the Asperger's community where it's like there's this assumption that either you have this savant-y, high-functioning thing, or you're nonverbal. And the reality is — and I think you kind of described to us — is that there's a massive gradation, not between savant, necessarily, but between being high-functioning and being somebody who might be, even, non-nonverbal and non-communicative.

    Allison: Yes, exactly. So, the spectrum is very, very vast. And really, when we talk about the spectrum, a lot of times we're thinking about several different spectrums. So, we think about a spectrum related to those social communication and interaction areas. We also think about a spectrum related to those restricted, repetitive behaviors. But really any of the different symptoms or challenges that we may be talking about all kind of vary on these different spectrums, essentially. So, it's kind of like that neurodiversity spectrum that people will talk about. And at this point in time, a lot of folks have really moved away from even using terms high-functioning or Asperger's to describe someone who maybe has some more of those skills, and maybe needs less support, because — of a lot of different reasons — but one of those reasons is that sometimes individuals may have a lot of skills in one area and a lot of strengths, but then they might have a lot of challenges in other areas, too. And so, it's kind of hard to use a term like high-functioning or low-functioning to really encompass all those different areas of development that someone may, again, have strengths in or need extra support with. So, at this point, we really try to stay away from those kinds of terms, but folks will still use terms sometimes like nonverbal or non-vocal to describe individuals who, maybe, aren't communicating with speech. Maybe they use some sort of device to communicate, or pictures, or sign language and those kinds of things.

    Adam: How we label these things, talking about — do you have autism? Are you autistic? How do we address that? How do we say it in a way that, I think, is acceptable for the person who might not be neurotypical.

    Allison: Right. That is a huge conversation at this point, and there's folks with different perspectives. So, it's really challenging to say, across the board, you should use either person-first or identity-first language. So, within the disability community, there had been a huge push starting in about the 1970s where folks were trying to use person-first language, like saying ‘a person with a disability’. But I would say within the autistic self-advocate community, which is huge and continuing to grow, a lot of folks are really moving towards identity-first language instead. So, identifying as autistic individuals. At the same time, there are some folks with autism who prefer being called a person with autism. So, when we want to refer to a group of individuals, typically it's best to think about what, overall, people are saying within that community. So, I would say, again, within the self-advocate community, a lot of folks do prefer identity-first language. But when we're interacting with an individual, it's best if we're talking to them and asking them how they would like to be referred to. So, some folks will have a really strong preference for one or the other, and other individuals will say they don't necessarily care as long as you're conveying respect to them. So, ultimately, that respect piece is really the most important part of the conversation. But at the same time, it's nice if we're able to use the language that someone prefers.

    What is the current therapy model for ASD? Why is this model used?

    Adam: There's this idea that a lot of treatments, traditionally, that folks with autism have been, either subjected to, or have been used to “help” them, are, really, more of corrections so that neurotypical people will feel more comfortable around somebody who has a behavior that is more autistic. So, I guess the question is then, too, tell us what ABA therapy is, and then explain that shift in thinking.

    Allison: Sure. So, ABA is Applied Behavior Analysis, and that is a very commonly used form of therapy for autistic individuals. Also, other individuals with things like intellectual disabilities or other kinds of challenges. But essentially, ABA is an intensive intervention method that focuses on teaching a bunch of different skills. So, it can be applied to some of those social types of skills that may be challenging for an autistic individual, or it can be applied to helping an individual be more flexible and adapt better to changes in their schedule, for example. It also can be used to teach specific skills related to communication or activities of daily living. So, things like zipping up your hoodie, putting on your shoes, all of those types of things. So, there's a lot of different ways that you can use the principles of behavior to essentially teach different skills. And some of those ways are criticized, maybe more often than others. So, one way of teaching skills is essentially having the individual repeat that behavior a lot of times, give them a lot of practice and reward them with something that they like to basically motivate them to engage in that behavior. And so, that's one way that someone may use those principles of behavior to teach certain skills. There's also other ways that we can do that, too. So, some of those are more naturalistic, meaning that we're working on these different skills, but in an environment that feels more, essentially normal, like an environment that they would be in their everyday life. So, more like a school type of environment, a playroom, the playground, those kinds of places. And so, those interventions tend to be a little bit better received because those skills that we'd be working on, and that type of intervention, are more applicable to everyday life and some of those social interactions and things that may be challenging for an individual on the spectrum.

    Adam: If I have a hard time making eye contact with you, do I need to sit in a chair across from you and be either incentivized or disincentivize over and over again to make eye contact if I can otherwise listen or communicate without making the eye contact? Why? Kind of… why?

    Allison: Right. So, essentially, what you're pointing out is — really, the important piece here is what behaviors are we choosing to focus on, right? So, are we choosing to focus on behaviors that, again, make us feel more comfortable as neurotypical individuals interacting with these folks, or are they behaviors that are actually meaningful for this individual, for their family, that are going to help them access their environment, access school better, those kinds of things. So, really, that's what I try to prioritize when I'm working with families, is thinking through what are those skills that you want your child to have that are meaningful to the child and to your family that are going to help them be able to sit in class, for example. Maybe be able to make some friends at school, play some games with those friends, those kinds of things. So, really, the focus is on what behaviors are we choosing to target and making sure that those behaviors are, essentially, socially valid, or, basically, these behaviors that the individual would want us to help them with, or their family would want us to help them with, rather than the behaviors that, again, some textbook tells us we should focus on or that we as neurotypical individuals think are the most important. So, it really comes down to that idea of providing more family-centered care, where we're really prioritizing what is best for that family or that child, maybe that adult as well. At this point in Michigan, ABA no longer has an age limit, so individuals who are past the age of 18 are also able to access ABA if they would like. But like you mentioned, sometimes those individuals don't want ABA, and that's okay, too. And they may choose to use other types of therapy services, maybe cognitive behavioral therapy for example, to help cope with some of the challenges that they may face as feeling maybe different than their peers, for example. Or some individuals may think that they don't need any of these services, and that's okay, too. But really, what it comes back to is really prioritizing that individual and that family to make sure we're helping connect them services that they want and that are going to help them in the different areas that they feel like are important to them.

    Why is self-advocacy important and how has it improved access to accommodations?

    AdamThings that seem to be born out of these types of spaces, for kids that would have been identified as being on the spectrum in the past, are sort of coming to everybody. And tell me if you share this thought, but the idea that I might need a quiet space to break away from. The idea that the best classroom isn't always a classroom where everyone just sits down and shuts up and — you know what I mean? A lot of us, and I would count myself in here, I was never built very well to be in school and be quiet and not get yelled at a lot. I got yelled at a lot, and it wasn't that I ever got any of — they didn't exist, really, when I was in school — those kinds of interventions. But it seems like they're there now where it was like, "Hey, do you need to take an extra 10 in between class and go over into a quiet space?” Or go and hit a punching bag, or walk on a walking pad, or something like that. Or sit — I sit in a wobble stool here. You can see it; you can see my wobble stool over in the corner of the studio. I do not sit in a chair if I can help it. And it feels like, for someone like myself — I'm just going to insert myself into this — some of this stuff would've been great when I was 11, 12, 13. But it's kind of there [now]. I feel like folks on the autism spectrum have sort of paved that wave for kids who might not be considered, or be diagnosable anyway, to have these things in school and make school a little more accommodating.

    Allison: Yeah, you're absolutely right that a lot of different self-advocates with autism or ADHD or other kinds of disorders have really paved that way, and really advocated for certain accommodations, or just small differences that they have said would really make the difference for them in their school day, just to make school a little more comfortable or a little more tolerable for them. So, we definitely see a lot more of that in the schools nowadays than we used to, like you had mentioned. And I think, like you said, a lot of that really is due to all of that advocacy. And that's really an important skill that we should be instilling, in all of our kids, but especially kids who have autism or other disabilities who may find themselves in situations where they are not being treated the way they want to be treated, or where there are small differences that might be able to make an environment feel more comfortable for them. So, advocacy is certainly an important area for us to be working on with individuals. And I think you see a lot of those payoffs in the school settings now with some of those different breaks, like you said, or sensory spaces and things like that that have kind of come into fruition. So, it's really important for us to just think about some of those small things that, again, can make an environment feel so much more comfortable or can help us engage in different kinds of, essentially, stimming behaviors. Because another thing that has really gotten more traction lately is the concept that everybody stims in different ways, whether you're on the spectrum or not. People engage in different behaviors to get that sensory input. It may just look a little bit different, or maybe we have ways of making it less apparent or obvious to others, but everyone's engaging in those kinds of behaviors, maybe twirling their pen, for example, or spinning back and forth in their chair, and things like that. So, that's another big shift that I've seen in terms of how we talk about stimming and how it used to be more of something that people wanted to get rid of and try to reduce. And now it seems like something that people are embracing a lot more and willing to let someone have a fidget, for example, if that makes them feel more comfortable or is something that just feels good to them.

    Is there overlap between ASD and ADHD?

    Adam: The number of folks that have been diagnosed on the spectrum has kind of increased, and I imagine a lot of that just has to do with awareness and stigma. I think, sometimes, the cultural criticism you'll hear is like, “Oh, everybody's got a problem now,” which is cynical and not helpful. But when shame is taken out of the equation, I think a lot of people can go, “Man, I feel like I am struggling in this little area. I can go get a diagnosis.” And then, I think, that ties into ADD/ADHD a lot, and I was just curious how you saw the relationships between autism and ADHD.

    Allison: Yeah, absolutely. There is a lot of overlap there. If you look for statistics about how many folks are diagnosed with both of those, there's kind of a wide range of percentages that you'll see. I would say if you took the average of those, it's probably about half. So about half of autistic individuals also have an ADHD diagnosis. So, there's certainly a lot of overlap, especially when it comes to specific behaviors related to, sometimes, restricted interests. People talk a lot about hyperfocus nowadays as being kind of a symptom of both, for example. But you also can see some of those social challenges in an individual with ADHD based on them, maybe, engaging in certain hyperactive kinds of behaviors or impulsive kinds of behaviors that may then impact their relationships with others or their friendships, for example. So, there's certainly a lot of overlap, and that's oftentimes a differential diagnosis that I'm trying to make when I'm evaluating an individual for autism, is whether they also meet criteria for ADHD, or maybe they only meet criteria for ADHD, right? So, we have to think about the idea that someone may have autism, may have ADHD, or may have both, and that's not just ADHD that comes into the picture. Things like anxiety and depression and learning disabilities and things also often overlap. And a lot of those get at that concept of neurodiversity again, and thinking about how a lot of folks are different. Our brains all function differently, but trying to figure out what, essentially, label makes the most sense to describe an individual's strengths and challenges can be really difficult, especially when it comes to the autism and ADHD piece. 

    Why are autism diagnoses becoming more prevalent?

    Allison: I think one thing you had mentioned was the increase in prevalence of autism, and there's several reasons for it, and you touched on several of those. So again, people know more about autism nowadays. I think there are more individuals who recognize it's not just these savants who are able to do these incredible math calculations in their heads. And it's not just individuals who, again, need a lot of support and maybe aren't communicating vocally and things like that. There is such a spectrum there, and I think people are starting to recognize that there is that spectrum and there's more individuals who meet those criteria. At the same time, also, there has been the collapse of those four different diagnostic categories into just autism spectrum disorder as one category. So, in that sense, if you look at autistic disorder, for example, which is one of the previous names, compared to autism spectrum disorder, you would expect that to, again, have really increased in....

    Adam: So, it's just an empirical gain at that point.

    Allison: Right. But then, also, related to the stigma, that, again, seems to be shifting in really positive ways. And also, there are a lot of services that insurance is willing to cover. For example, ABA or speech therapy or other kinds of services you may be able to access if you have that diagnosis of autism. So, that is, maybe, a little more motivating, essentially, for families to pursue that diagnosis for their child, so then their child can get more of those services covered by insurance. Because those services tend to be very, very costly.

    Adam: So, for example, if I have a child that has, maybe, delayed speech, they're three and a half, they're four, they don't talk much. You could get occupational speech therapy, but you probably need a diagnosis from insurance to do that. And certainly, that very well could be an underlying cause, but you — and maybe that child goes on and never needs services two years after going occupational speech therapy. That could be an example. I'm making up a hypothetical there.

    What is the role of diagnosis for accessing services and resources?

    Allison: Yeah, yeah, absolutely. And you'll also see that schools are able to provide a lot of different services, too, which is wonderful. They have a different type of eligibility process that you go through for special education services. So, schools do not diagnose autism, but they have their own criteria for autism spectrum disorder that they use to determine whether a child may qualify for special education support, which may include resource room time, may include speech therapy, occupational therapy, et cetera. So, some folks are able to access those services at school, which is great, but other individuals may not qualify for those services at school, or there are some folks who may need additional support beyond what they're able to get just within the school day. And so, those are individuals who oftentimes are the ones pursuing that formal medical diagnosis — people will refer to it as — through psychology clinics or through doctor's offices and things.

    Adam: And, just to clarify for everybody, too, that's because the school district might require that for an Individualized Education Plan for them, right? You might need a diagnosis, or at least a note from a doctor or something. Does that vary from district to district? I don't want to get into IEPs. I know some people are like, “Uhm.” 

    Allison: Sure. So, no, you don't need the medical evaluation for the school side of things whatsoever. That's a common misconception, though.

    Adam: Well, then you've cleared it up for me.

    Allison: Yes, you do not need that. Really, that outside diagnosis is going to help with getting access to different therapy services that insurance would cover, but the information that is gathered during one of those diagnostic evaluations can still be helpful for the school-based team. So for example, if I do, say, eight or nine psychological tests with an individual, and I write that all up in a report and then the family gives it to the school, then the school has all of that data that they can now use as well. So, it certainly can help on the school side of things, but the school still has to go through their own evaluation process to determine whether an individual meets those criteria and is going to get an IEP or a 504 plan or other kinds of supports.

    What kind of support is available within the public school system?

    Adam: What's a 504 plan?

    Allison: A 504 plan, essentially, lists accommodations that an individual needs at school because of their disability. Oftentimes folks with ADHD may have a 504 plan where, maybe they don't need individualized instruction or a ton of extra support, but maybe they need to be able to have extra time on tests, or maybe they need to be able to sit at the front of the room, or those kinds of things. So a 504 plan is really focused on the accommodation side of things, whereas an IEP also includes additional instructional kinds of supports and additional services.

    What is the evaluation and recommendation process like for ASD?

    Adam: Let's talk a little bit about what you do here at Central Michigan University, and just give us an idea of what you do and then what other services are available for people in the community. I mean, we can start with — I guess, start with kids since that's what we were talking about, is people who are kind of in that K-12 range, but then how does that expand? What are common services in your community look like if you feel like you might need to seek out these kind of services?

    Allison: Sure. So here at CMU, I'm the Director of our Approved Autism Evaluation Center within the Carls Center in the Health Professions Building. So, what that means is I help lead our autism evaluation team, which includes a medical doctor, myself, and also some speech language pathologists, and then some graduate student clinicians who join us. And what we do is those medical kind of evaluations, or those outside evaluations. So, not school-based evaluations, but other clinical diagnostic evaluations where we are determining whether an individual meets those criteria set forth in the DSM for autism spectrum disorder. So, those evaluations are pretty lengthy. They typically include about a two-hour caregiver interview, two hours or sometimes more of psychology testing, two hours of speech and language testing, a half hour medical appointment. And then we have a team meeting with all of those different providers where we talk through all the information we gathered and determine whether they meet criteria for autism or other diagnoses and whatever recommendations we think would be helpful. And then, we spend an hour with the families going through all of that information. So, the process is pretty long. In terms of the recommendations that we typically will offer folks, sometimes we will recommend ABA, it really depends on the individual and the different skills that they have, and the different areas of need that they have. Other types of services that we may recommend are speech and language therapy, which can help with a lot of different things. So, not just articulation challenges, but also more language kinds of concerns and pragmatic types of concerns. So, being able to use language in that social way. We also will sometimes recommend occupational therapy or physical therapy for fine or gross motor skills. And then, also, some folks may need additional support with their diet, because we oftentimes will see restricted eating. Basically, people will say, “Oh, my child's a really picky eater,” and they'll only eat carbs or something like that. So, we'll sometimes recommend nutritional counseling. We also recommend a lot of parent education and support because parents are with their children all the time, and they also need to know what strategies may be helpful and how they can help support their kiddo at home. And then, we also may, at times, recommend behavioral health services. So, that could be cognitive behavioral therapy or behavior therapy. It could be psychiatric support if they need support on the medication side of things, et cetera. So, those tend to be the biggest recommendations that we offer for individuals. We see kiddos who are between the ages of 2 and 18 here. So, individuals who are older than that oftentimes have a challenge trying to find a provider who is willing and able to work with adults. So, there tends to be a big shortage of providers who can provide those adult diagnostic services, unfortunately. So, that tends to be really tricky. Some folks may get those evaluations through other mental health private practices, essentially, but really, insurance plays a big role in all of this. So Blue Cross, Blue Shield is the reason that our clinic is interdisciplinary and has all of those different providers. Other insurance companies don't necessarily require that. So, some folks may be able to have just a psychologist conduct the whole evaluation, for example, and be able to access services that way. So, folks should really check with their insurance companies about what those criteria are for an evaluation and what different providers are in network versus out of network to have an idea of what services would be covered when it comes to the evaluation and other services like ABA or speech language therapy, for example.

    What is autism acceptance and why is it important?

    Adam: Let's talk a little bit about Autism Acceptance Month and, kind of, what that is, what people can do to support it. What can you look for in your community? What's likely to be going on?

    Allison: Yeah, that's a great question. So autism acceptance is such an important topic, and there's different ways that we can try to embrace that idea of accepting autistic individuals. We have a lot of events that'll be happening on campus, actually, which is really exciting, and the information about those should be posted on the CMU events page and such. So, you can find some of those different events there. But there'll be some events, including a autism acceptance softball game, which we're really excited about. And, also, we will have an autistic magician coming to campus to share his talents with everyone, as well. When it comes to autism acceptance more generally, really the idea here is inclusion. So, including autistic individuals and respecting their differences and acknowledging those differences, but also respecting the strengths that they bring to the table too, because there's a lot of huge strengths that they also bring to their community. So, it's important for us to really include those individuals and acknowledge those differences while also respecting those differences. When it comes to the concept of autism acceptance, that seems to have kind of stemmed from the idea of autism awareness, which is where this movement kind of started and where the movement still stands with some different organizations. But really, the autistic self-advocates have pushed for more than just awareness. So, it's great for people to know what autism is, for example, but we really want folks to accept these individuals, include these individuals, really focus on that belonging piece rather than just acknowledging that they're in our community. So that's really where the idea of autism acceptance has kind of flourished.

    Adam: So, this kind of stems from the beginning of our conversation, which is this idea that as this community kind of grows, and grows into adults in the last 20-30 years, we're not saying, “Here's the thing you need to know about,” we're saying, “This is a thing that we're all living with. We're all part of the same community.” And there's a lot of overlap between people who are considered very neurotypical and people who might be more clearly neurodivergent or have some behaviors or some needs that aren't as typical. One community, one fabric. We can all kind of share the same spaces, right? It's like you said, it's an accessibility thing.

    Allison: Yeah, absolutely. And that's something that we've really prioritized, and there's actually some folks here at CMU who have gotten some grants to be able to support autism acceptance lessons in the public school system. So, we are on our third year of those lessons in local elementary schools. And, really, what we do during those lessons is try to teach about autism and what it is, but again, really encourage folks to think about how autistic individuals are just like us in so many different ways. They have different kinds of preferences just like we do. And so, a lot of those lessons look like us explaining some of that information, but also really reading books about autistic individuals and, kind of, pointing out those similarities, and those differences, and trying to encourage those elementary school students to start accepting their peers who may have autism. And then, we're hoping that they'll go back to their houses and talk with their families about autism and bring home some of these books that we give to the local schools to teach their siblings and their parents about autism. And then, hopefully, since we've instilled that in these young kiddos, they're going to grow up to be adults who still maintain that important message of autism acceptance within their communities.

    Adam: Well, that's awesome. Thanks so much, Allison, for coming in. It was a pleasure to talk to you today. I hope you have a great Autism Acceptance Month.

    Allison: Yes, thank you very much.

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