Search for tag: "autism"

Interviewer: Why should autism be diagnosed early in life? We'll talk about that next on The Scope.

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Interviewer: I'm talking with Dr. Debbie Bilder. She's Principal Investigator of the Utah Registry Of Autism and Developmental Disabilities. We'll be talking about the need to diagnose children with autism spectrum disorder early in life.

So, Dr. Bilder, if I were sitting next to a three or four-year-old who has autism spectrum disorder, what might I notice about this child that may be a little different from a typically developing child?

Dr. Bilder: Well, that child may not be making eye contact or may be preoccupied with something that is really hard to separate them from, in particular something which is not a typical toy that a child that age might be interested in.

Maybe when you do talk with that child, that child would have a particular interest that that child would go on and on about regardless of whether you may share that interest or not. A child may also have self-stimulatory behaviors, like hand flapping or even looking at things through the corner of their eye.

Children with autism have a really difficult time connecting effectively with their peers. So that child may be sitting on the bench next to other friends or the other children are out playing on the playground.

Interviewer: And is it usually obvious? I mean, if I were a parent, would I just know that, you know, maybe there's something a little different about my child?

Dr. Bilder: For parents, particularly, you know, thinking about a parent in which that's the first child, so they don't have a child to compare their first child to, they might notice that there are significant delays. Some children with autism also have other delays as well. So there would be a delay in language that their pediatrician or family practice doctor would mention to them. They may have difficulty in interacting with other children or choose not to play with other children.

But the majority of children with autism who have normal [intellectual 00:02:06] ability, which is the majority of children with autism, it may not be apparent to a parent who does not have another child to compare that child to.

Interviewer: I think you would argue that it's important to make that diagnosis, to make that identification early on.

Dr. Bilder: Well, we know that children who are identified by two or three years of age and receive treatment right away, intensive treatment can really optimize their ability to function, optimize their ability to be in a school classroom with other neurotypical children.

And some children who receive this intensive intervention may even no longer meet criteria for autism when they get older, and even though that's a very small percentage, we want to give children whatever shot they can get to be able to develop these skills when their brain is most capable of learning them.

Interviewer: So it's more difficult to make this intervention effective later in life?

Dr. Bilder: Yes. There's a developmental window as we develop language, as we develop our interactive skills. Clearly, there's a time in which our brains are intended to develop these skills. And if we could take advantage of that in these children, even though they may not develop those skills inherently, they can be taught these skills and that is the time at which their brains are going to be most receptive to that education.

Interviewer: So you've been involved in some large-scale research recently, looking at the ages at which children are getting that diagnosis from autism spectrum disorder. What did you find?

Dr. Bilder: Well, as far as the diagnosis itself, as far as receiving a diagnosis, we did not see a reduction in the age at which that child first received a diagnosis. The median age, when we looked at this for children who were four years of age back in 2010, was about 35 months here in Utah, and similarly it was 35 months two years later.

And then this particular study actually extended over six years. We participated in two of those years that I just mentioned. But even looking across the six years, there was no significant difference in the median age at which these children across seven different sites were identified with autism spectrum disorder.

The focus of this study perhaps goes even a little bit before then. The real aim is to have these children recognized as having a developmental concern so that they then are able to access a comprehensive evaluation.

So for those children when they can access and they do access a comprehensive evaluation even before the diagnosis is made, the developmental delays will be identified and you can initiate treatment even before you have a clear diagnosis of autism.

Interviewer: And so you said that there was no change in these two years that you looked at the numbers of diagnoses. I mean, what does that mean to you? Why does that concern you?

Dr. Bilder: Well, there was no change in the age at which these children were identified with autism. And what concerns me is that we as medical providers, as medical professionals despite our best efforts and there is a lot of work going into early screening so we can subsequently have early identification of autism to give these children that opportunity.

Despite these efforts, that age at which they're first presenting for a comprehensive developmental evaluation is not going downward. So it makes me really wonder, well, what about the process we have in place, because we're working really hard to initiate this process, what about this is not ultimately leading to the goal in which it was established, which is to reduce the age at which these children can access treatment?

Interviewer: And do you have any insights into what barriers are in place there?

Dr. Bilder: Well, this particular study was an epidemiologic study. So its purpose was to look at this in a very systematic way across multiple sites so that we can say this is a problem, and with an epidemiologic study, it creates the validity that this really is a problem.

What's up to future research and we even have fabulous researchers here in our Department of Pediatrics, what's up for these researchers is not just to accept that there's a problem, but then to look to see, well, where is this process breaking down, and they're doing that. And I'm looking forward to seeing the results they come up with, because that's the type of research, even though not done at an epidemiologic level, but done on a more fine-tuned, kind of make more granular level to figure out what exactly needs to change so that we can be successful.

Interviewer: I'm wondering if you think part of the problem might be that there might be a reluctance of parents to admit that there's something different with their child.

Dr. Bilder: Part of this process is beyond the typical office setting in regards to the pediatrician or the family doctor. Part of this process in addition to identifying which children are screening positive and then making the referral for those children to obtain a comprehensive evaluation is the part about it which requires the parent to be able to do so.

And if that parent were having a difficult time accepting that there might be something wrong with their child, that can unintentionally affect their willingness and speed at which they access a comprehensive evaluation for their child.

So as we look at this bigger picture, recognizing and measuring the gaps between that positive screen and the time at which the child presented for a comprehensive evaluation could really help us get a sense for if there is a delay, what could be causing it?

Interviewer: Do you have a recommendation for parents in maybe looking at their child or thinking about their child or their future or being screened for autism spectrum disorder?

Dr. Bilder: Well, every child, regardless of whether there is a concern or not, should be screened by their pediatrician or family practice doctor at 18 months of age and again at 24 months of age.

My recommendation is that when that medical provider expresses concern and makes the recommendation of referral to allow themselves to ask that provider, you know what specifically are they concerned about to be able to have an opportunity to be convinced that this is important.

As far as red flags for parents, like things to look out for, you want to look for a baby at six months of age, they should be smiling, having a reciprocal smile. So the mother smiles or the dad smiles and they smile right back and expressing joy even their facial expression of joy by six months of age. You should be expecting back and forth sounds and other facial expressions certainly by nine months of age.

They should be babbling or at least pointing to objects by 12 months of age and indicating that desire to engage and initiate that interaction with the caregiver. Using single words by 16 months of age. And then if by 24 months of age they're not using two words together in a meaningful way, that also is a red flag that they need to be evaluated.

I think the big red flag that's important for parents to be aware of because primary care providers go through these developmental milestones routinely during their well-child visits, the particularly important red flag for parents to be aware of is that if their child loses any social skills or language skills, then they really need an immediate visit with their primary care doctor even before the next well-child check. That is not normal. That itself should initiate a visit to their primary care provider for further screening.

Interviewer: And what's next for your research?

Dr. Bilder: We are excited to have received a four-year grant from the Centers for Disease Control and Prevention through the Autism and Developmental Disabilities Monitoring Network. We are thrilled to be part of this. What this funding does it allows us, the University of Utah, along with the Utah Department of Health and the Utah State Board of Education, to really enhance our case finding for children who are affected by autism as well as allowing Utah to be part of these national prevalence numbers that are established for the U.S.

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Interviewer: What sports are good for children with autism? Dr. Julia Connelly is the Clinical Director of the University of Utah Autism Spectrum Disorder Clinic. What do you recommend?

Dr. Connelly: Even though it's very tricky to engage kids on the autism spectrum in physical activity, we still recommend that they engage in 60 minutes every day. We really look for individual sports that focus on skill improvement, interest, and having fun. Some of the examples would be gymnastics, swimming, track and field, and climbing. And the reason why we particularly like these sports is that even though they're individual sports, kids still are on a team which can be very beneficial for them.

Interviewer: Any final advice?

Dr. Connelly: I would say do not force your child into any sport. If they're not interested right now either explore other options or give it some time and try again later.

updated: April 13, 2021
originally published: April 19, 2019

Interviewer: Raising the potential of young adults with autism, up next on The Scope

Announcer: Examining the latest research and telling you about the latest breakthroughs. The Science and Research Show is on The Scope.

Interviewer: I'm talking with Dr. Anne Kirby, Assistant Professor of Occupational Therapy at the University of Utah. Doctor Kirby, you've published research that suggests that how well people with autism perform in life depends a lot on their parents. Can you explain what you mean by that?

Dr. Kirby: We found that parent's expectations are what we call mediating outcomes for adults with autism. What those parents say they expect after high school ends up usually playing out.

Interviewer: What are some of the behaviors or accomplishments that you're looking at?

Dr. Kirby: So three main areas that I'm interested in and that have been explored a good deal in the literature are employment after high school, living arrangements after high school, so whether they're still living at home with their parents or other family members or if they're living with roommates or independently or with a spouse. And then finally, social participation, so how often they're interacting with friends in sort of a social manner.

Interviewer: So you found basically a link between parents who have higher expectations for their kids, those kids tend to perform better during this age. How did you look at that?

Dr. Kirby: We don't exactly know whether parents are just doing a really good job of determining what their child is capable or of if their expectations are actually driving what ends up happening. But one example of how they may be driving, what happens is, for example, a parent that doesn't think that their child is going to be able to be employed after high school is most likely not going to be encouraging their child to get a part-time job while in high school or find summer employment, participate in volunteer work in the community, or take on other roles in the household and community that might be helping them build skills for later employment. And then, that would then turn into not having those skills later in life to be employed.

Interviewer: They might not realize the potential of their child if they don't put them in situations where they look and see what they can do.

Dr. Kirby: Right, exactly.

Interviewer: Could it also be that if a parent expects more from their child that then the child sort of believes in themselves and tries to accomplish more.

Dr. Kirby: Certainly, and there are some theories that suggest that not only what parents expect but what someone expects of themselves, which can be influenced by what parents expect of them, can make a big difference.

Interviewer: I'm wondering too, how much the parents' background might play into all of this. If someone is living in poverty, they might just have other things on their mind and may not have the time or ability to put these kids in different situations, like volunteer work, as you say, or things like that.

Dr. Kirby: Certainly, and so we did find that parents from a lower income background have lower expectations for their children and their children are having these less ideal outcomes that we studied. And I think the example you just gave is right on point in the fact that those families might have a lot more that they're dealing with and might not have the same resources to devote to helping build those skills.

But the other thing I've thought a lot about is that you can imagine a parent who's been struggling to be employed themselves would be less likely to think that their child with a disability is going to be able to find steady, high-paying employment if they're having trouble with that. And so some of it could be resources, but some of it could be perception of possibilities.

Interviewer: How much of a difference was there between kids whose parents had high expectations and kids whose parents didn't?

Dr. Kirby: So I think it's really important to mention that despite the fact that I'm saying high expectations lead to better outcomes, the outcomes are overwhelmingly poor. So very, very few people with autism in this national sample of over 1000 people with autism had employment of any kind at the end of this eight-year study. So they were in their 20s during this time. Similarly, very, very few of them were living independently and very, very few of them were socializing at any rate with their peers or friends.

Interviewer: I wonder how much of that, though, is just what is out there for these people to begin with. I mean, I think it's still a very new idea that people with autism can join the workforce.

Dr. Kirby: Right. And it's been said often that leaving high school for this population is like falling off a cliff. It's something that parents talk about and has been written about in the literature and popular news type articles. It's kind of repeatedly referred to as this cliff because they no longer have somewhere to go every day where they know what's expected of them. The world drastically changes for them after high school and at the same time, services are just totally disappearing. So they might exist. Vocational rehab is there and can help, but often families find themselves on wait lists for extremely long periods of time.

Interviewer: So how are you following up on these results? What are you doing next?

Dr. Kirby: So what I really want to know now is if we could make a meaningful change in what parents expect for their children and if that could then make a positive difference in outcomes for people with autism. And if that's possible, then it really might be a really important target for intervention, to not only focus only on intervening directly on children with autism and trying to give them work skills through groups and programs, but to work with families to really make a difference and how families are structuring what they do throughout the high school years to really prepare for life after high school.

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Interviewer: Going to learn more about a brand new book called Autism Spectrum Disorder in Mid and Later Life. That's next on The Scope.

Announcer: Health tips, medical news, research and more for a happier, healthier life. From University of Utah Health Sciences, this is The Scope.

Interviewer: Scott Wright is a researcher at University of Utah and also the editor of the book Autism Spectrum Disorder in Mid and Later Life. Tell me about this book. Why did you decide the world needed this book?

Scott: I do think the world needs this book. My interest into autism issues with the aging intersect, the gerontological connection, came about when I was involved in a research project where I saw grandparents, grandparents as being very involved in the care of children, young adults on the autism spectrum, and realized that okay, here you go. Here's the grandparents yet again showing the kind of support and that safety net to help out their grandchildren. But think about this, their grandchild that has special needs and the grandparents were there providing that care. Well, from there, I realized that grandparent issues are also aging parent issues. Are there aging parents that are still supporting their adult child with disabilities, in this case perhaps with autism spectrum disorder, autism conditions? And yes, there are. In my discovery of the literature and the research, aging parents very much have this very, in a way, very concerned futuristic look about what is going to happen to their son or daughter who's an adult in their 30s, 40s, and 50s. What's going to happen to them when the aging parents, when they die? And then from there I came to appreciate that the amount of research, literature looking at this topic, it simply wasn't there. There was just this huge gap in looking at autism issues and aging, which literally stopped at adolescence and then picked up again a little bit in the geriatric years but nothing in between.

Interviewer: So kind of like a dumbbell. There's a lot young, a lot old, but mid to later life, nothing.

Scott: That's a great image to think about, very much like this barbell effect where you have a lot of interest, activity, services, programs, just general thinking that autism is a childhood issue and then it just goes away. Or that we're not paying attention to it once individuals transition, the transition years to adulthood. What happens then? Because autism is a life-long condition. What happens after adolescence? This is what this book does.

Interviewer: Is this book accessible for the lay public? I'm noticing a lot of references and I don't even know what these are called, oh, they're called references. At the end of the chapter it looks like an academic kind of book.

Scott: The original intent of this book was to create a publication of the latest evidence-based research. And indeed it has, I would say a good part of the book is academic and written for other professionals. But really this book is for a variety of different audiences - grandparents, aging parents, adults on the autism spectrum that are aging themselves. So this book has this great feel of being accessible to so many different groups and I think it's been accomplished. That goal has been accomplished with the final outcome.

Interviewer: It sounds like, so when you first brought up what interested you in it, I guess I just automatically assumed that parents with, somebody with a child that has autism are probably just going to be essentially parents their whole life. And that's what you're seeing is actually going on, but maybe that's not the best way.

Scott: That is a great question because for many parents, their son or daughter will reach adulthood and the programs and services that were there in the K-12 years, which are federally mandated, suddenly it appears that once their son or daughter reaches adulthood there is such a lack and a huge gap in services and programs. Parents become, in effect, the support system. When we look at individuals with autism, role models like Temple Grandin, she has some very interesting advice. And what she would say is a key issue during the transition years to adulthood, work. Work. Employment is such a big factor for a hallmark indicator of adulthood. But it would be my guess that the listening audience may not even know this statistic: 90% of individuals on the autism spectrum, they have the highest unemployment rate of any disability group. We're talking about 85-95% of this population with autism are unemployed. This is unacceptable in our society. Why is this happening? Work is a hallmark for adulthood and yet unemployment is a huge challenge. We need to address this.

Interviewer: So what were some of the things that you found out in the process of editing this book? And I will say that you did tell me that there were a lot of contributors to it. International contributors, not only people with MDs and PhDs but people on the spectrum as well. So what did you learn? What are some of the things that can be done in mid and later life that isn't being done?

Scott: What to glean from this book, with you're right, international authors, individuals, adults on the spectrum who are contributing the chapters, I think the two big themes that emerge out of the book that are important issues actually relate to the general population, to you or me and to everybody. That is when you think about to love and to work are two key factors to well-being and quality of life. For individuals on the autism spectrum, to work, which we would think of as almost like an automatic factor of being involved in our society, is a huge challenge for all sorts of different reasons. And then to love would be the issue of establishing relationships. More importantly, social networks and I think of this term social capital in terms of to love and having connections and social support. And then work to have a productive contribution to society and in return the rewards of that, this is what needs to be worked on, addressed for autism issues into adulthood and then into later life.

Interviewer: And what are they answers? Are they within the covers of this?

Scott: I think that the authors, yes. The authors that have been collected here, brought together in this book, they've done a great job with indicating what the answers are. I'm proud to say that, again, the researchers that are involved in this are talking about the data that they have collected but more importantly are the contributors who are adults on the autism spectrum, they have shared their story. And their story says we have learned a lot, we'd like to share it with everybody else, the right steps to live a fulfilling life.

Interviewer: And it sounds like it might offer some new perspective and new thoughts, too. Just even the perspective of, boy, a job is really important. Inclusion is really important but yet also is autonomy. That's important as well.

Scott: It is, so think about . . .

Interviewer: And these are all relatively new concepts to the thinking of the condition, is that correct?

Scott: It would be because, again, think about how we view autism, it used to be primarily a childhood/adolescent context. Now the context is when you're an adult on the autism spectrum the issue of community inclusion is huge. How can I sustain an independent living circumstance? Which to maybe many other people that's going to be an automatic transition, for individuals on the spectrum it's fraught with a variety of different challenges. So community inclusion is big. And then the employment issue, again, I can't think of one issue that would help so much in the lives of individuals on the autism spectrum and their families and our communities and our society would be meaningful work, and the opportunity to engage in and interact with meaningful work is one of the key issues in the landscape of autism today.

Interviewer: So it sounds like it's really kind of perhaps a guide into some uncharted waters.

Scott: I think that's really the best way to describe that. This book is pioneering, I think, in opening up new understanding of autism and aging issues.

Interviewer: What would you hope if a parent or a grandparent that had somebody with autism in their life purchased it? What would hope that they would be able to do after they have read it?

Scott: I think the key here is to realize that services, programs are becoming available in our society and in our communities are rapidly increasing. That's the good news. And that for the individuals who would read this book is that they should not, please, feel like that they're all alone, isolated in this particular context. That there is an increasing amount of services and programs in our communities. The key is to build the bridge between the individuals who need it and the individuals who can provide it. That's going to be the key factor.

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Interviewer: A new study just came out indicating shorter life expectancy for those with ASD. We're going to find out what you should take away from that next on The Scope.

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Interviewer: Scott Wright is a researcher at the University of Utah and the editor of the book, "Autism Spectrum Disorder in Mid and Later Life." A recent study just came out that indicates that life expectancy for those with autism spectrum disorder is actually shorter than what we previously expected. Tell me a little bit about that study first of all, and then eventually I want to get to what's our takeaways from this.

Scott: This is a relatively new study in the British Journal of Psychiatry, and that the perception was that autism would affect the lifespan, average life expectancy, as equivalent to like Down syndrome that most individuals would not reach mid-life or perhaps even the 20s or 30s. But the perspective changed in the last two decades that autism is indeed a lifelong condition, and we have examples of individuals like Temple Grandin, Donald Triplett. These are individual that are pioneers. They're into their 60s, 70s, and 80s with autism.

Then comes this study. This study has indicated that premature mortality is a very, very important characteristic of the overall health, well-being, quality of life for individuals. In effect, the researchers in Sweden discovered that there is a loss, on average, for some groups in the autism landscape, up to the course of 30 years less than the general population. This says a lot about two factors.

Is it a biological vulnerability of individuals? Or is it the fact that the context, especially in the healthcare settings, has a lot that needs to be worked on so that individuals on the spectrum can interact with the healthcare system to deal with their healthcare challenges?

Interviewer: What I understand that you're saying is that it could be a genetic cause that individuals with autism just are going to live 20 to 30 years, on average, less. Or it could be they're not getting the adequate healthcare that they need in order to have a full life like the rest of us?

Scott: The article and the analysis of this data is indicating that many individuals are simply left to the side of the advantages that we find in healthcare settings for the general populations.

Interviewer: And I should also say a lot of the times individuals with autism could be a little medically complex as well.

Scott: Yes.

Interviewer: And they're not completely always understood by physicians or the hospital system, not able to necessarily communicate what their conditions or concerns are. Do you feel like that's where it's kind of happening?

Scott: I think that's exactly . . . it's an interaction effect. If we think about the challenges of an individual in the autism spectrum, a premiere characteristic is social communication. And let's just use the term, there can be a degree of awkwardness of interacting with other individuals. And an individual that is very reluctant or hesitant, or has stress or anxiety about interacting with the healthcare system, is going to be very reluctant to even go.

So that's another added factor that I think physicians, healthcare professionals should be aware of, that the individual in the spectrum, might be having difficulty in expressing the challenges that they're going through.

Interviewer: What's the takeaway for somebody that might have an individual with autism in their life or an individual with autism? Is it, "Boy, go to the doctor, find a physician that understands where you're at, that you feel comfortable communicating with"?

Scott: I think that would be a very important issue is to find a primary care physician, specialist, who can show that they are aware, they have empathy for the challenges that are associated with autism. The other takeaway message would be, I think that we also need a greater level of training, training for healthcare professionals to be aware of the characteristics of autism so that it is realized, recognized in a clinical setting. I really think that the training has just started. We have a long way to go.

So that'd be the other aspect, the other side of the coin, is training of healthcare professionals, to be more aware of autism issues because we just said that it's not just a pediatric issue. It's an internal medicine, it's a primary care, clinical setting, it's a geriatric. It's a life course issue that we should all be aware of.

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Dr. Gellner: There is a lot in the news lately about Autism. How and when do pediatricians screen for this? I'll give you the info on today's Scope. I am Dr. Cindy Gellner.

Announcer: Keep your kids healthy and happy. You are now entering the Healthy Kids Zone with Dr. Cindy Gellner on The Scope.

Dr. Gellner: You know your pediatrician checks your child's development at every well visit. What happens if your child is not following along with their developmental milestones?

Sometimes, we as pediatricians, get early clues as to if something isn't just quite right. Maybe it is a baby who does not make eye contact or babble, does not smile when others smile or talk to them. Maybe it is a child who at 15 months is not saying "mama" or "dada" or any other words.

Screening for autism happens at the 18 and 24 month well child visits. By that age there are several developmental milestones that your child should have met.

While there are a lot of screening tools out there, most pediatricians use something called the revised M-CHAT, short for modified checklist for autism in toddlers. It is a standardized set of questions, with yes and no answers, to see if your child meets the criteria for autism. If the scoring on the checklist raises red flags for your pediatrician, there is a follow-up set of questions to be asked to get more information.

Sometimes kids are late talkers, late walkers, or not very social but still show affection. Sometimes these are because of other people carrying them around or talking for them. But sometimes it is a big red flag that something needs further investigation.

If a child misses certain questions on the M-CHAT that is when your pediatrician will refer them to an early intervention program or developmental pediatrician. Early intervention programs see children up to age three, usually, and they have speech therapists that can help do evaluations if your child isn't talking as they should.

Often, there is a developmental specialist working with early intervention as well. A developmental pediatrician will be able to officially diagnose your child with or without autism and help your regular pediatrician with getting your child any special services they may need.

If you have any concerns about your child's development be sure to bring it up at your child's next well visit or make a special appointment with your pediatrician.

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Interviewer: Are you the biggest barrier for your child with autism transitioning into adulthood? We'll examine that next on The Scope.

Announcer: Medical news and research from University Utah physicians and specialists you can use for a happier and healthier life. You're listening to The Scope.

Interviewer: Helping any child into adulthood can be challenging and there are special challenges if your child has autism. Court Allred is with the Autism Spectrum Disorder Clinic in Neurobehavior HOME Program at University of Utah Health Care. What are some of the common things that parents of children with autism do that kind of hinder that transition? Are there some common things that you see in your role as a social worker?

Court: Yeah, the two main common that I see is the parent, they're coming to me saying, "My kid never leaves the basement," and when I listen to their story, it's because the parent has given them a debit card, the parent shops for their groceries. The parent doesn't make them do anything and then there's the parent that is pushing too hard, that is unable to see what their child really is capable of because the parent themselves is struggling with anxiety or fear about what's going to happen if their kid doesn't transition quickly or smoothly.

Interviewer: So doing too much or not doing enough. So there's a balancing act here.

Court: There really is and it's so subtle and it's difficult to say. In each individual case I have to, sometimes I'm recommending that they push a little bit and other times, I'm recommending that they stop pushing, that they stop pushing.

Interviewer: Is there any way that a parent can recognize that, or do you really need a third party such as yourself to come in and be able to identify that?

Court: Well if they're pushing too hard the easy, that's the easiest one to identify and that's because there's stress in the home. If they're pushing so hard and they're always fighting and they feel like they can't get their kid to do anything, and lots of tension in the home. The other one, if they're not pushing enough, usually it will be a loved one like a girlfriend or a boyfriend or a grandma or grandpa or aunt saying, "You really should make your son do the dishes. Your son should have a job by now." This parent usually is trying not to push their son too hard, they're overly accommodating and that can come from a background of being abandoned themselves or of really enjoying being a parent and being a caretaker because we take being a caretaker seriously.

Interviewer: This is challenging stuff. I mean, how do you help somebody through that?

Court: What I have to do is first I have to develop a relationship with the parent. That parent has to feel like I understand that their fears, they're based in reality. So once I have a relationship with them, I help them see that what they want is for their child to either transition or to have less tension in the home and so I just get them to see that what their child is capable of might be different than what they want their child to be capable of. Or that they are capable of more than they think they are.

Interviewer: So kind of an expectations thing.

Court: Really it comes down to managing expectations, adjusting expectations, lowering expectations sometimes.

Interviewer: Like some parents think that, they look at things that are too big and celebrate the things that are too big and really sometimes when you have a child with autism, you have to look at those small victories, am I right there?

Court: Yeah, a lot of the parents feel like my kid doesn't have a job, my kid isn't going to college and passing his classes, therefore he's failing. Then with that type of the case, we just say, "You know what, did your kid wake up at a reasonable hour today? Did he do some laundry? Did he do a chore as he agreed upon? Did he send in a job application?" Small steps, we get them to see small things because when they're looking at the big picture in long term, they have a hard time seeing, "Okay what is my child capable of doing right now and can I celebrate that small success?"
With the parent that isn't pushing enough, we have to start getting them to feel like it's okay for their child to be in distress. It's okay for their child to be unhappy and anxious and mad at them. So with that again, it's the small thing like make your kid get up and do the laundry and if he doesn't do that, then it's time to turn off the Internet.

Interviewer: Does the parent have to kind of be the one that's got the big picture in mind? So if the ultimate big objective is to get a job, that the parent has to come up with some small steps to get the child there?

Court: That's tricky because sometimes the kid's expectation is different than the parent's. People with autism, they struggle with seeing the big picture themselves and they don't recognize that what they're doing in the short term isn't facilitating long term. So a lot of them don't have a long term goal or they might say that they do but their daily behavior doesn't match that.
Parents, yeah they have a long-term view and sometimes we have to help them modify that because sometimes they're unrealistic and they feel like their kid will be able to get married one day and have a home and have a job and some of them will have for sure obviously. But sometimes they're going to need a group home setting with support. So then we have to help them modify that expectation as well and what steps to take to move forward in that direction.

Interviewer: I think it's also interesting that individuals with autism, we all kind of know what their limitations are, right, and it's a thing but parents that have issues because they felt abandoned as a child and now they're doing things to their own child, with or without autism, they can be blind to it, right?

Court: Sounds like we're starting to talk about normal parents with no neurotypical kids at this point. Being a parent is hard regardless.

Interviewer: So many parents bring that baggage into any parent-child relationship but it sounds like it's really magnified and can really have bigger effects if you have a child with autism.

Court: Yeah, I guess for me, we should probably not use the word "baggage." We should probably use the word like "issue" or "background."

Interviewer: Fair enough.

Court: Or their own individual path, something like that that's more neutral.

Interviewer: That's good.

Court: Then the other one we need to remember is they are all individual. Too many people that don't understand autism think they're the same, that they all struggle with the same issue, and that's why it's so hard working with autism, it's because each person is an individual with unique attributes and has autism. But yeah, if we can get parents to see that they can work on their own issues. It's not just about their son or daughter overcoming his issues. The parent needs to work on their issues too.

Interviewer: Because it all contributes.

Court: It does.

Interviewer: It all contributes to everybody. It's like a system.

Court: I get emails from parents all the time saying, "My kid didn't wake up when they said they were going to and I just think we're going backwards and what's going to happen in 30 years? I'm going to die?" I'm just like whoa, take a deep breath. In reality, he just didn't do what he said he was going to do and what do we do when people don't do what they say they're going to do? We implement agreed upon consequences. So let's just go back to the plan.

Interviewer: Instead of 30 years in the future.

Court: Yeah.

Interviewer: Yeah. Are there any resources that parents can go to? It really sounds to me like you do need somebody that is an expert in this to kind of help you identify if you're pushing too hard, not hard enough, give you some strategies to help. Are there other resources that a parent could go to?

Court: You know if they take their young adult and they see a specialist, any specialist hopefully will identify what the parent can work on themselves. They can read books. There are self-improvement books. You can look up specific titles like how to manage my anxiety or how to stop being a caretaker. A lot of it sometimes is codependence and there's tons of books on codependence and how to stop doing that.
But as a parent, what we try to get them see is that they need to push themselves as hard as they're trying to push their child. So if they want their child to be flexible with how they manage their time, then they as a parent need to be flexible and celebrating the small steps that their child is doing. They themselves need to see this is just a small little blip, this is just by the time they are a little bit older, things will work themselves out and it's not as scary as they think it is. It doesn't have to mean they're going to fail forever. A lot of it is then just learning to implement the very coping skills we're trying to teach their young adult.

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Dr. Jones: Adults with autism are prone to certain medical conditions. This is Kyle Bradford Jones, family physician at the University of Utah on The Scope Radio.

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Dr. Jones: The Journal of Autism has recently published a paper from the University of Utah that I participated in that looked at what medical conditions adults with autism tend to have. Now a little bit of background with this, this project started in the 1980s. Researchers from the University of Utah led by Bill McMahon as well as some researchers from UCLA tried to find every child in Utah that had autism.

Now since this was the 1980s it was difficult to diagnose. There weren't a ton. They ended up finding a couple of hundred people and they've followed them since then. And so a follow-up that was done a few years ago provided medical questionnaires to either the individual or their caregiver and asked a lot about their medical problems, their hospitalizations, their surgeries.

We ended up finding about 92 people of the original 200 some odd people, 11 of which had passed away, so we were able to find their caregivers that were able to provide some information. They filled out these medical questionnaires and gave us the information. And let me tell you a little bit about the population itself.

Most were in their 30s so they were originally found when they were small children and now are adults. Sixty-two percent have intellectual disabilities which is what we used to call mental retardation. And that's higher than the typical population with autism. Around the United States it's actually about 40% of people with autism have intellectual disabilities.

But like we said because of the way they were originally found in the 1980s, it's expected they'd be a little more severe. Seventy-five percent were male, which actually goes along with what we know currently in autism. It's much more common in males and most of the individuals took over four medicines a day, so they had lots of different problems they were being treated.

So some of the common problems we found, a big one, number one, seizures. This is very common among individuals with autism. In a lot of the studies of children with autism this isn't seen as much mainly because the seizures tend to start in adolescence and so this is something that often times will carry into adulthood. And sometimes they have one or two seizures and that's it. But if it's recurrent, it usually starts in adolescence.

Number two, obesity is a big one. When you look at studies in Europe they don't see that as much, so this tends to be a little bit more of American culture fitting in. But at the same time it's important to keep in mind because individuals with autism have a lot of sensory issues and tend to be a little more picky eaters. And so because of that it's something to pay close attention to.

Number three, sleep problems. Individuals with autism tend to make a little bit less melatonin in their brains which is what helps us regulate our sleep. And so because of that a lot of them have difficulty sleeping and that's actually one of the first things we try to tackle as clinicians is to try to get them to sleep if they're having behaviors, if they're having depression and anxiety. Because if they're not sleeping, they're not really able to deal with the other problems.

Number four, constipation. Now this sounds a little silly like, "Okay, that's not a big deal." For this population it can be a huge deal. If they are a little irregular with their bowel movements it can cause lots of problems in other areas. They don't eat as well, again they don't sleep as well, they're more likely to have poor behaviors. And so this is something to keep a very close eye on.

Number five, balance problems. A lot of falls, a lot of lack of coordination, and this is something to watch out for. Once it starts there are little things you can do to try to optimize their balance such as physical therapy or determining if they need a cane or a walker. But for the most part it's mostly about keeping them safe. And there isn't a whole lot that you can do to stop the progression except to optimize those things as best we can.

Now with the 11 individuals who had died but we still got information from their caregivers there wasn't any difference among their medical conditions. They had the same as the individuals who survived. Looking at hospitalizations, about a fourth had a hospitalization for a life threatening condition. The vast majority of the time it was pneumonia, that was a really big one. And that seemed to be the biggest one that caused death and so that's something that as a caregiver, as someone in the community, as a clinician to really watch out for and be careful with, pneumonia.

Almost one in five had had a major surgery. So that's a little bit higher than you would expect, so definitely lots of medical problems that are causing issues. The females among the group even though there were fewer of them, they tend to be sicker. They had more problems. Probably the most interesting finding here there was no difference between the individuals who had intellectual disabilities and those who didn't in terms of their medical conditions.

A lot of other studies have shown that the worse your intellectual disability, the more medical problems you're going to have. But we didn't find that in this group. Which is interesting and is something to keep an eye on as further research goes along.

In summary, adults with autism experience lots of common medical problems. The main ones being number one, seizures. Number two, obesity. Number three, sleep problems. Number four, constipation. Number five, balance problems. This is all research from a recent study we did here at the University of Utah that was published in the Journal Autism and is important information for anyone who interacts with these people in the community.

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Interviewer: New insights into how the brain might be set up differently in certain people intellectual disabilities and autism, up next on The Scope.

Announcer: Examining the latest research and telling you about the latest breakthroughs. The Science and Research Show is on The Scope.

Interviewer: I'm talking with Dr. Megan Williams, assistant professor of neural biology and anatomy at the University of Utah. Dr. Williams, despite the fact that autism and intellectual disabilities are pretty prevalent, not much is known about the biological changes that take place early on that might set these people down that pathway. But you've found some new insights here.

Dr. Williams: Our new study has shown that there's a very specific defect in connections between neurons in the brains of mice that are missing in autism associated gene. And I think what's unique about our study is that autism and intellectual disability, these are disorders in which it's not going to be easy to see connectivity changes because they're going to be very subtle and probably quite small. It's not like people with autism are missing a whole part of their brain.
And so we've looked at very high resolution at two very specific neuron types and identified a very subtle but very important change in connectivity.

Interviewer: Your research focuses on a gene called Kirrel3. Why did you focus on that gene?

Dr. Williams: I become interested in that molecule almost 10 years ago. It was identified in the C. elegans, which is a round worm, as a very important molecule for synapse formation, and then there started to become a lot of human autism and intellectual disability genomic studies that implicated this gene in these disorders.

Interviewer: And just quickly, what is the synapse?

Dr. Williams: A synapse is the special cell junction between two brain cells, and that's really the essential point of communication between the cells. So your brain cells require synaptic connections really to process any kind of information to see, to hear, to think.

Interviewer: Your research was investigating what defects are caused by changes in that gene. So you approached that question by disrupting that gene or knocking out gene in mice. And what did you find there?

Dr. Williams: Kirrel is expressed in two cells and it probably helps these cells stick together, and because synaptic junctions are places where the neurons sort of stick together and send their signals to one another, it signaled that Kirrel may be important for the synapses between these two very specific cell types. So the two types of neurons that express Kirrel normally have a synaptic connection, and when you're missing Kirrel, they have about one-third fewer of these synaptic connections.
Although that seems like a fairly small change, what happens is it greatly impacts the whole network activity. So all neurons are sort of interconnected to other neurons eventually, much like roads are in a city, and when you disrupt about 30% of them, of this one kind, you end up affecting basically the traffic or the flow of information in the whole brain.

Interviewer: Okay, so that part of the brain is not as active?

Dr. Williams: Actually it's interesting because we're very interested in understanding exactly which synapses might be defective in these disorders. These mice are missing some excitatory synapses, so that means these are synapses that activate the network. But the trick is that these are excitatory synapses that form on inhibitory neurons, so we are really talking about missing excitatory synapses or activating synapses onto neurons that quiet the network.

Interviewer: Okay, interesting.

Dr. Williams: And so this is sort of a double negative and what ends up happening is that we end up exciting the network too much in these knockout mice.

Interviewer: How can we think about that is the idea may be that there's more chatter going on in the brain and it's just harder for the brain to control.

Dr. Williams: That's right. Actually in the hippocampus, this brain region we investigated, synaptic transmission is usually very sparse and that sparseness allows you to have . . . it's thought to allow you to have distinct memories, and so what could be happening is that there's much higher chatter or electrical noise in your brain and it may be sort of inhibiting that encoding of unique memories and they may blur together or not be as crisp and this of course affects learning.

Interviewer: You looked at sort of young mice, do we know whether those changes persist through aging?

Dr. Williams: So we looked at young mice first because this is where these disorders become most diagnosed, but we also looked at older mice, so what we would call adult mice. So it seems like the brains older mice missing Kirrel, though their synapses are not normal, the overall network activity seems to be back to normal.

Interviewer: They kind of compensated for that change later on.

Dr. Williams: That's right.

Interviewer: Could it also be that those early changes might be setting off another chain of events that you just haven't been able to find yet?

Dr. Williams: That's right. In the adult, the older mice, the synapses are still not normal and so especially if the system is stressed, we don't know how the brains would respond. Kirrel3 is also expressed outside the hippocampus, so all our work was in this brain region, but it is expressed in other places and we would imagine it is probably affecting synapses in other brain regions.

Interviewer: And you had mentioned that Kirrel3 had been found to be associated or mutations or variations in that gene was associated with people who have intellectual disabilities or autism. How common was that association seen?

Dr. Williams: Autism linked genes are still only a few percentage of people with autism and Kirrel is one of these and it's still going to be very low percentage of people that have autism and intellectual disability. So this is common and this is one of the reasons we know so little about the brain changes underlying these disorders, but as the buzz words of personalized medicine grow and genome sequencing becomes easier, it's possible that in the future patients with autism and intellectual disability if we can identify their mutation that caused it, if it is a genetic cause, then knowing if they have a Kirrel mutation and whether what the exact defects are in the Kirrel, patients can at least inform those patients' treatments.

Interviewer: Is there anything else you'd like to say?

Dr. Williams: I think one of the really big take-home messages of our paper is that a very small and subtle synaptic defect can have a very big impact on circuit or network function, and so this is why it's really key to identify these very seems so small and possibly insignificant, but these defects in your brain which is hyper connected can amplify to cause some major problems.

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Interviewer: The most common health issues for individuals with autism and how to treat them, next on The Scope.

Announcer: Health information from expects, supported by research. From University of Utah Health, this is TheScopeRadio.com.

Interviewer: Dr. Daniel L. Coury is the medical director of the Autism Treatment Network of Autism Speaks. What is the mission of the Autism Treatment Network?

Dr. Coury: So our mission is to improve the medical care for individuals with autism everywhere and to develop evidence-based medical practices for treating their comorbid conditions. We're discovering that autism really affects many parts of the body, perhaps every part of the body, and it's these other medical problems that have been overlooked in many research studies and in clinical care. So we're out to try to shed better light on what these problems are, and how best to manage them.

Interviewer: What are some of the conditions that the Autism Treatment Network is concerned about?

Dr. Coury: So one of the most common areas has to do with GI disturbances. Many parents of a child with autism say that their child has a lot of GI problems, with abdominal pain, or excessive constipation or diarrhea, or reflux. A variety of GI problems. And for a long time people wondered whether these parents complained more, or if there was really more of this medical problem. And it turns out that they do have medical GI problems than people who don't have autism.

And that second part of that question is, are these GI problems different from the GI problems that other typically developing people have? And so we've been looking at that, and we find that it looks like they're the same GI problems. They occur more frequently, but they do respond to the traditional GI treatments in the great majority of cases.

Interviewer: And to some people hearing this, they might chuckle and go, "Well, of course they're the same." But there are concerns that a disease might manifest itself differently in different people, I suppose, and you want to really find out for sure if that's the case.

Dr. Coury: Well, that's correct. And what has happened with many primary care providers over the last 20 years or so is that parents of a child with autism come with information that they found on the internet about a diet that they should be trying, or some treatment that they should be trying, and many family doctors can't keep up with the variety of things that are published on the internet.

As a result, I think that a lot of these doctors started to lose confidence in their clinical skills, and started thinking, "Well, maybe this is more complicated than I can manage." And so they would refer them to specialists, or specialty centers, and not do the things that they actually were capable of doing that would help children. So I feel that we've done a lot to demystify that.

Interviewer: Yeah, that'd be very helpful for a physician. And also for the patients as well, to know that yes, I can go to my regular family physician and any advice or information they would have would help my child, just like it would help anybody else.

Dr. Coury: Yes, it would, because especially when the specialty centers are really overloaded and have long wait lists. And to wait a long time to see a specialist when in fact it was something that your primary care provider could have managed, is just a much more efficient way of getting services to families, and getting these children the help that they need.

Interviewer: What are some of the other conditions that you're concerned with?

Dr. Coury: Well, another one that I have known for some time has increased, is epilepsy. Seizure disorders occur in people with autism at a much higher rate than the general population. Most studies show that over the course of your lifetime, a person with autism is about 19% of the population is going to have a seizure disorder compared to less than 1% of the general population.

So again our question is, is there anything about this that we could have tried to predict? Are there certain kids with autism who are more prone to have this? And then, what is the best way to treat these seizures? Do we treat them the same as we do in typically developing individuals, or do they respond better to different medications?

Interviewer: And what did you find out when it comes to epileptic seizures?

Dr. Coury: Again, so far we haven't found that there is anything particularly different. They do respond well to the regular epilepsy medications. And, like people who don't have autism but have epilepsy, there are some who have very resistant seizures that are difficult to treat. And so there are all sorts of treatments being examined to try to help that population.

Interviewer: So once again, good news for parents or somebody with autism, that the regular standard procedures all seem to apply.

Dr. Coury: Yes, it does.

Interviewer: Are there any other things that you're concerned with at the Autism Treatment Network, as far as those comorbid conditions?

Dr. Coury: Well, the third most common one has to do with sleep. A large majority of parents of a child or a family member with autism complain that their family member has problems falling asleep or maintaining asleep, and getting up in the middle of the night, or is rising early in the morning. Some of these families report that their child only sleeps three or four hours a night. And so we've been very interested in that. At first it was thought that, well, because this person has a neurodevelopmental disorder, perhaps other parts of the brain affecting sleep have been affected, and that we need to use a medical treatment.

In fact, we've found that non-medical treatments, good behavioral habits surrounding sleep are effective about two-thirds of the time. What we also found is that it's very difficult for families to carry this out. At the end of the day, a parent of a typically developing child who has sleep problems still has the energy to engage in the behavioral changes that we recommend. But our families with a child with autism are often worn out from dealing with their child's behavioral and developmental issues all day long. So with a lot of support we can improve their sleep without medication, but it is difficult.

Interviewer: And it takes a team, it sounds like, not just a couple of parents. Other family members need to be involved in that.

Dr. Coury: They really do. And one of the things that we've really found with managing these children is that they really require team management from the medical side as well. The families need help with care coordination to get the services that they need, they need help with keeping those appointments, a variety of things, because it can be a pretty overwhelming experience, parenting a child with autism.

Interviewer: Are there any of these types of things that you do want to treat differently with somebody with Autism? We've already talked about how your GI problems, or epilepsy, or sleep can be treated in conventional ways. Is there anything that you need to use nonconventional ways to treat?

Dr. Coury: Not at this point. We're finding, again, it's maybe difficult to use our conventional treatments. So for example, we have difficulty treating constipation because the sensory problems that many people have with autism have, makes it difficult for them to take the medication. So we look for other ways that we might be able to get around that, or we look for ways to make the medicine more acceptable so that the patient can take it.

But so far the fortunate thing has been that we've found that these medical problems look very much like what they are in other people. We're still not sure what is causing them. We haven't identified if there is a different root cause that is part of the autism, but the good news is it looks like whatever that root cause might be, they respond to our traditional treatments.

Interviewer: In addition to learning that traditional treatments for those ailments do work for individuals with autism, does this research tell us anything else?

Dr. Coury: Well, another area of study that is just now becoming of greater interest has to do with immune problems, and we have found that the families of people with autism have a higher rate of autoimmune disorders. These are disorders like arthritis or diabetes, and we have found that people with autism have a higher rate of diabetes than the general population. These, again, give us an idea of what might be going on that causes autism.

So what we're doing with the network, the more we learn about these other medical problems, as we trace back what causes those problems, we feel we're learning more about autism, and eventually what causes it, and how we might be able to better treat it, or even try to prevent it. So these are exciting times.

Announcer: Have a question about a medical procedure? Want to learn more about a health condition? With over 2,000 interviews with our physicians and specialists, there’s a pretty good chance you’ll find what you want to know. Check it out at TheScopeRadio.com.

updated: April 10, 2019
originally published: July 29, 2015

Interviewer: How to help your child with autism handle verbal teasing. That's next, on The Scope.

Announcer: Medical news and research from University of Utah physicians and specialists you can use for a happier and healthier life. You're listening to The Scope.

Interviewer: Dr. Elizabeth Laugeson is the founder and director of the UCLA PEERS Clinic and PEERS curriculum developer. It's essentially a program that offers social skills training for adolescents and young adults. And oftentimes, adults give the wrong advice to teens when it comes to teasing and what you should do if somebody teases you.

Dr. Laugeson, tell us what the advice normally is and then let's talk about why it's wrong and what we should do.

Dr. Laugeson: Well I want you to actually think about that for a second, Interviewer. I don't want to put you on the spot, but what do you think that parents and teachers and adults will tell kids to do often in response to teasing?

Interviewer: Somebody teases me, let's see It's tough for me because I don't have kids, but I'm going to pretend that I have kids. So-and-so teased me, I'd tell them to ignore them.

Dr. Laugeson: That's right, that's what they're told. They're told to ignore, they're also told to walk away, and they're told to maybe tell an adult. I ask every group of teens that I work with that same question and they always give me those same three replies. They're told to ignore, walk away, tell an adult. Then I ask them if it works, and do you want to guess what they say?

Interviewer: It does not work.

Dr. Laugeson: They say it does not work. And you know, it completely makes sense. Imagine this, imagine that you were teasing me and I ignored you. What do you think you would keep doing?

Interviewer: I would keep doing it until I got the reaction that I wanted, because that's what I'm trying to do.

Dr. Laugeson: Right, exactly, and I'm kind of looking weak in the process. Do you think I'm more likely or less likely to get teased if I ignore you?

Interviewer: Yeah, exactly. You are, aren't you?

Dr. Laugeson: I'm more likely. If I walk away, what are you going to do?

Interviewer: Keep teasing you until I get you to turn around.

Dr. Laugeson: Exactly, you're going to follow me and keep teasing me. And if I tell and adult and try to get you into trouble, then what are you going to want to do?

Interviewer: Oh, there's going to be payback at 3:00 out on the playground by the bike rack.

Dr. Laugeson: Exactly, right? So again, these are not the kinds of skills that we want to teach and unfortunately the vast majority of social skills programs teach those very skills. They say to ignore, walk away, or tell an adult.

Interviewer: Why? Why is that what we're teaching?

Dr. Laugeson: I think it's because we don't really stick to the research. Most psychologists, clinicians, people who teach social skills are not researchers. So we haven't investigated what actually works in reality. It's what we call ecologically valid social skills. What do socially accepted kids do in these situations?

Interviewer: And I still want to know why is this the common I mean, it must have continued this way for a reason. Like, my parent told me, I tell my kids, is that why? Is it just

Dr. Laugeson: I mean, we can only hypothesize. I think we've been telling kids to do this for generations. And I'm certain that we were told to do the same thing.

Interviewer: Yeah.

Dr. Laugeson: And just never really thought about what that would look like in reality.

Interviewer: Gotcha. So we know that that's wrong and there is actually research that shows what we should do.

Dr. Laugeson: Yeah. So the reality is that every kid gets teased. It doesn't matter how popular you are. It's how you react to it that determines how significantly or severely, how chronically you're teased. And so kids who are pretty socially accepted, what they do when they're being teased is they give a little comeback. A short comeback that shows that what the person said to them didn't bother them. And actually, what they said, it was kind of lame, you know? It was kind of stupid.

So they'll say things like, "Whatever" or "Yeah, and?" Or, "And your point is?" Or, "Am I supposed to care?" "Is that supposed to be funny?" "Tell me when you get to the funny part." Things like that. And they give the impression that what the person said, really didn't bother them. That does not make the teasing fun. For the teaser, it doesn't reinforce the teasing. In fact, if anything, it sort of embarrasses the person who's teasing us. That is an ecologically valid skill, and that's what we teach in peers.

Interviewer: Fascinating. So what kind of success rate does this generally have? Eighty percent, 90%?

Dr. Laugeson: It's difficult to know because we don't follow kids around all the time, but this particular skill has been tremendously effective in terms of reporting on homework. One of the things we do in our programs, we actually give kids homework assignments to practice the skill that they learned in the group in order to generalize these skills outside of the treatment setting.

One of the assignments in this case would be to use these comebacks when you're being teased and it happens so frequently, every kid gets teased throughout the week. They use these strategies and report back, and our kids, I think, are actually quite shocked at how quickly and how effectively these skills work. And they're rather easy to learn.

Interviewer: Very nice. Is it the way you deliver it as well that you've got to be paying attention to?

Dr. Laugeson: Definitely the way you deliver it. So there's basically, there are some gender differences in how boys and girls actually say this. And I don't teach the gender differences because every person is different, but in general what we find is that boys tend to sound a little bit more bored when they give these comebacks. So they'll say things like, "Whatever." Kind of indifferent, kind of bored.

Girls, on the other hand, will often have a little bit more attitude, a little bit more dramatic flair. They might say "Whatever." The way that you deliver this is very important, but, boys and girls can do this either way. A lot of people sound bored, a lot of people sound indifferent, others sound more dramatic and have more attitude. It's fine however you choose to do this.

Interviewer: So there's not a way that I shouldn't do it, the point is I need to come back with something that shows, eh, that doesn't bother me or that's dumb or whatever.

Dr. Laugeson: As long as you're giving the impression that it doesn't bother you. I mean, you could say whatever and sound really upset. That would not give the same type of meaning and wouldn't be as effective.

Interviewer: Some great solid advice. Is there some other resources you can recommend to parents that want to learn more of these social skills, these scientifically proven social skills?

Dr. Laugeson: Yeah, absolutely. We do have a really nice resource for families, parents, or educators that's called the Science of Making Friends. It's a book that basically teaches all of the skills that we teach in the PEERS program. There are narrative sections for parents or teachers, there are actually chapter summaries for teens and young adults to read about the skills in more kid-friendly terms.

There are homework assignments at the end of every chapter. And there's even a companion DVD that provides video role play demonstrations of all the skills that we teach, including teasing. Additionally, there's also an app. It's called Friend Maker. You can find it in the App Store. It also has all of the skills that we teach in PEERS, but everything is laid out in outline form with embedded role play videos in the app.

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Lisa: Hello. This is Lisa.

Interviewer: Hi, Lisa. How are you doing? This is Scott from The Scope.

Lisa: Hi, Scot.

Interviewer: So today I thought we could talk about supporting adults on the spectrum. So when it comes to supporting adults on the spectrum, what is the latest information that has you really excited right now?

Lisa: I think the increased attention on autism on adults is the most exciting thing. There's a lot of focus now at looking at transition age kids and adults as the number of kids with autism increases. They're all growing up and becoming adults. There's been a call to action to look into what's happening with adults with autism and how we can do best by them, provide services for them.

Interviewer: What's some of the latest information as far as what can we do? And how can we provide for them better? Did we have any new breakthroughs or new thoughts on that?

Lisa: Well, the area that I've been looking at is healthcare and health status. We completed the study that's just been published that really documents the very increased rates of many different medical and psychiatric conditions among adults with autism. We don't really know why many of those conditions are occurring at such a high rate compared to the non-autistic's counterparts. So we have to understand that better and then figure out ways to treat and provide health care in a better way.

Interviewer: Sounds like we're very much at the beginning of this journey.

Lisa: I think that's true. It's just been the last couple of years really that there's been a lot of talk about adults in transition-age youth and adults. So I think that's just going to increase and it's nice to see all the attention being put in that direction.

Interviewer: So a lot of talk, a lot of attention. What do we need to do to start making progress at this point? Is that going to be a hard transition to make or is it going to naturally occur? What are your thoughts on that?

Lisa: I think it's going to naturally occur because there are increasing numbers of adults with autism out there in every sector of society. The education system, all these kids who are identified with autism in K through 12 education, they're aging out and then there's a huge need for continued services for them. Yet there's not much organized for them. So in the education realm, in the employment realm, in the health care realm and the social service realm, all those areas are being increasingly tapped because, there are all these individuals looking for those services.

Interviewer: You had mentioned earlier that for adults that have autism we're starting to identify other medical issues that face them? What are some of the more common ones that we're starting to discover?

Lisa: All of the medical issues that we've seen occur more frequently in children with autism, we also see them occurring in adults with autism. These are things like GI problems, sleep problems, mental health issues like anxiety and depression. Some immune conditions. All of those things have been identified as perhaps occurring more commonly in children with autism compared to non-autistic kids.

Then we see that happening in adults as well. But, in addition to those conditions, we found almost every diagnostic increased at a higher rate in the adults with autism. So these are things that commonly you don't identify in children because they occur later in life. So things like hypertension, obesity, some heart disease, metabolic disorders. The list goes on and on.

There are only a few conditions for which the adults with autism were no different than their non-autistic counterparts. And that was cancer was one thing that stood out. They didn't have increased rates of cancer compared to the non-autistic adults.

The research I'm doing on adults is looking at the health status ad health service utilization. And, also looking at the health care providers, what they know and what researches they need with regards to caring for adults with autism.

Interviewer: What types of resources are they missing that you are finding that they do need? And what could we do about that?

Lisa: We did a survey of over 900 health care providers who provide care for adults in the Kaiser Permanente system here in northern California. They reported that their knowledge is very poor. Their knowledge about autism is very poor. And they require better training, like training on how to communicate effectively with patients with autism, resources that are available that they can direct their patients to, the need for resources, the need for better ways for providing care for them. They're really unsophisticated when it comes to dealing with patients with autism because they just haven't seen that many or they're not even aware that they have patients with autism.

Interviewer: Oh, yeah.

Lisa: So there's difficulty communicating with them and difficulty doing assessments on them because of what the autism is. So they're really sort of facing this big wave of children who are going to be entering their practices as they become adults and they have very little training, background knowledge, comfort level, resources available, strategies to communicate, all of those things they're saying they really need help.

Interviewer: That sounds like a lot. That sounds like whole sections. And maybe medical school education is going to have to change to help physicians be more up to speed on this thing. Or, do you see specialties arising where you're going to have specialty doctors that deal just exclusively with adults with autism?

Lisa: I think there really is a need for general training in medical schools so every medical student is taught about autism spectrum disorders and what it is and that they persist throughout their lifespan. It's not just a pediatric condition. These kids grow up to be adults and they still have these impairments. Or maybe there's a need for a specialty in adult medicine that's going to deal with adults with neurodevelopmental disorders. People with autism have health issues, as I've mentioned, all different kinds of health issues just like people without autism do. And they're being cared for by their primary provider. And so there's really a need for training of those primary health care providers on this segment of the population.

Interviewer: What's next? What is it that you want to look at next? What piques your curiosity?

Lisa: We're going to be starting a project very soon looking at this transition in healthcare from pediatric to adult medicine. Really trying to identify what are the health issues facing that transition-age youth population? And what are the barriers and facilitators to care for that population? We're going to be talking to patients and their caregivers and providers. And then we want to try, based on what we learn about what works and what doesn't work, try to develop and test some strategies, things that will improve that transition. So that's our next focus.

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Interviewer: You know what? We're getting better and better and better at helping identify children with autism early on and a lot of that is because of some of the great and exciting research that's going on right now. Actually, taking that research and then putting it out in the real world so it does good, that can be a bit of a challenge. That's what Dr. Aubyn Stahmer specializes in, or that's what she's interested in right now, I should say. She's an autism researcher and currently is examining how you take evidence-based practices for autism and then put them into the clinical and the school settings. So we're excited to find out about some of the latest findings from the research and how these best practices are actually being implemented, and what we can learn and what we can do to maybe help with that.

Dr. Stahmer: thanks for taking time. First of all, tell me about some of the new evidence-based practices you're currently trying to bring to community settings that have you most excited.

Dr. Stahmer: Well, we're really excited about the early interventions program that we are bringing into communities in San Diego and Sacramento. It's an evidence-based program that was developed for preschoolers that we've moved down to toddler age and developed some parent-friendly materials and manuals with the project developer and then a training program too. We have this great team of psychologists and speech pathologists and funding agencies and psychiatrists and all people from the community who have helped shape the intervention itself and the training program. So we're really excited about that one.

Interviewer: Is this kind of a cutting edge way of looking at it? Is what you're doing there, will it hopefully then go to the United States? Give me some context.

Dr. Stahmer: I think the challenge is that a lot of kids who are seen in early intervention aren't seen very intensively. We know for autism we want the service to be intensive as possible as soon as possible. We know that training parents is one way to get intensity up. Now it shouldn't be the only intervention. I'm not saying parents should do the intervention, but it's one way to get things started. As early interventionists, we don't go into this business thinking we're going to work with adults. We think we're going to work with kids.

Interviewer: Sure. Okay.

Dr. Stahmer: One of the things we think that's really exciting about our program is that we're training people to coach parents and how to do that in a way that's successful and that is meaningful both to them and to the parents, which I think will be really wonderful for a lot of different kids with different disabilities where parents need to learn strategies.

And then also teaching them these engagement strategies that are specific to kids with autism, really getting their attention, getting right in their area of focus and helping them to engage with people rather than objects. In the context of that really engaged moment, teaching new skills that they need to learn because the usual kind of child development strategies that most early intervention providers are used to learning aren't quite structured enough to use with kids with autism. But the alternative that we have in our community is really, really, really structured. It's probably too structured for families to use so we're trying to find that balance.

Interviewer: Yeah, it's a challenging thing. It's also interesting that you mention that you're helping parents. Just briefly, is that a new thought?

Dr. Stahmer: Yeah. It's not particularly new that we're training parents. It's something that has been around . . . I've been working with projects that train parents for 20 years. But I think it's becoming more common, especially in very early intervention where now we have legislation that says we need to do parent coaching and lots of data showing that it really is an important adjunct to education. So now we have the challenge of being careful not to have too much pressure on parents to be the interventionists because, really, they're the parent, and finding strategies they can use within their regular daily activities that don't again add stress and pressure to them, but that they can integrate into things they're already doing.

There are lots of researchers across the country using these naturalistic developmental behavioral interventions that are working on . . . which is good, I think. Lots of reliability in different labs of the kinds of strategies we need to be using. Now, really working on how to help families use them in a way that fits with their family.

Interviewer: What is one obstacle or problem that you keep trying to overcome in your work and if you could just overcome it, things would be so much better?

Dr. Stahmer: I think time to learn the new strategies has been our biggest obstacle for the providers. So this is complicated stuff, treating kids with autism, and it takes a lot of training and expertise to really understand how you need to individualize the particular intervention because all the kids are so different. And then, also on top of that, we're asking them to learn this parent coaching. It takes a lot of time and there isn't a lot of funding for that because agencies, of course, need to get billable hours, as all agencies do. Our partner agency has been great with allowing their therapists time to do this training, but I think more time and practice is our biggest barrier.

Interviewer: And what about for those parents that aren't in your community where this is something that's becoming a reality? Do they just need to be patient?

Dr. Stahmer: Well, we're working on developing some web-based materials. I'm just starting to work with Dr. Sally Rogers to develop some parent coaching materials that we can put online to help families. Laurie Vismara worked on this model as a distance coaching model. Brooke Ingersoll does as well. So people are looking at ways we can provide the training to parents who are in rural areas or low-income areas using technology, I guess, to help them. I think that's one next step.

We're also really working hard to put the training for therapists in a more distance format and figure out ways that we can do it in the most cost-effective ways so we can train therapists in other places to use similar strategies.

Interviewer: So the opposite question now, where does the biggest opportunity lie right now, in your opinion?

Dr. Stahmer: I think in understanding how to use technology to get people trained. Because right now it takes coaching. It really does. The literature is clear. You need practice with feedback, both parents and therapists. If we can figure out some great technology that works all the time where I could be sitting somewhere else giving people feedback while they're working . . . and people are working on this, I know. That, I think, would open a lot of doors for people who aren't living near a research center or a metropolitan area.

Interviewer: Yeah. Why do you do what you do? What gets you up and gets you in and doing this everyday? What's the engine that drives the machine?

Dr. Stahmer: The kids and the families. These are incredible groups of people and no matter . . . we've been to a lot of places where there are very few resources. Recently back from South Africa, did some work in Taiwan and there are families who . . . and in the United States, too. They're really just wanting their kids to do well and I really am motivated to find them ways to do that that are also fun, engaging and not stressful. I think that's our challenge is parents really want their kids to reach their best developmental potential and I want to be able to help them do that in a way that actually makes sense.

Interviewer: If I said, "You have a minute to talk about whatever you want to talk about when it comes to this topic," what would you say? What would you get up on the mountain and talk about?

Dr. Stahmer: Gosh. I think it would be that balance between helping parents help their kids learn and also not charging them with being the therapist for their child. Putting the techniques that we are helping them learn into daily activities that enhance their parenting. Because their kids are learning differently, we want to enhance their parenting and give them some techniques specific to their child needs, but also not give them the entire responsibility of educating their child from the very beginning. And providing the support that they need to keep their family functioning well.

Interviewer: Realizing that there are different roles and helping parents realize what those roles are. Doing what their role says they should do and allowing other people to do what their role says they should do.

Dr. Stahmer: Right. And letting the parents decide what that should be because, of course, it's going to be different for every parent.

Interviewer: Yeah. Sure, sure, sure. If a parent wants to stay on top of some of the latest best practices, do you have any resources where they could learn about this type of stuff? Because I find what you're doing in San Diego just really cool.

Dr. Stahmer: Well, the Autism Speaks website has really nice reviews and updates on research pretty often. It also has a nice section that shows different treatment methods for autism. A lot of these methods you can see examples of them on their website. There's also a new website called the Autism Navigator, I think should be up now, where parents can learn a lot about autism and different resources.

Interviewer: I love bringing this idea of proven, research-tested best practices that show you're going to get the best outcomes into the care of individuals with autism and these strategies. Is there somebody out there that's doing something that excites you? Like kind of give a shout-out to another researcher or a hospital in another community that's doing some exciting things that you've seen.

Dr. Stahmer: I'm going to talk a lot about Dr. Greg Aaron's work at the talk, really looking at leadership in large systems and how that needs to address sustainable practices when we're trying to move evidence-based practices. And so in a lot of our work what we're finding is therapists are really motivated to learn, but they really need some infrastructure. So I'm excited about the work he's doing about how to help leaders provide the infrastructure that is needed to do this.

Interviewer: What will you be talking about at the pre-conference in Salt Lake City? What is your topic?

Dr. Stahmer: My topic is moving evidence-based practices into the community. So I'm going to talk about our research collaborative and how we've done with this early intervention that I've told you about. Then I'm going to try to bring up some other research that people in San Diego have been doing and the types of things organizations need to do to get ready to do evidence-based practice because it takes some preparation. So what kind of leadership does there need to be? What kind of preparation do they need to have? And hopefully have a discussion with the people there in Salt Lake City and around Utah about how some of these strategies might be implemented there.

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Court: Basic concrete steps a person with Autism Spectrum Disorder can take to make friends or change their reputation, next on The Scope.

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Court: A lot of people come to me and one of their biggest concerns they have is, "I want friends," "I am lonely," or, "I'm tired of people thinking I meant something one way when I didn't and now they're mad at me and it's not my fault. I don't know what to do. What do I do?"

And it's amazing how simple it is for me just to say, "Look, I want you to start practicing smiling, making eye contact and saying people's names." You might be thinking, "People don't want me to smile at them or when I do, they snarl at me." I've heard that before. And at this point I just say, "Look, we're just going to practice. Just walk down the hallway, smiling with your head up. You've got just as much right to walk down the hallway with your head up as they do, and you look and if they're looking at you, you smile and if you know their name, you say their name and if you don't know their name you just say, "Hey, how's it going?"

That's all you've got to go. I'm not telling you to stop and talk to them, just keep walking. If they do stop, we'll worry about that later. For now, all I want you to do is just walk down the hallway, smiling with your head up. You'd be amazed at how quickly this can start to turn things around for you. When people don't see that you smile, they think that you don't like them. And neurotypical people, if you stop smiling at them, they're going to think you don't like them and they're going to stop being nice to you. And then your life gets really difficult because people don't listen to you, they don't want your help on a school project or a work project.

And it could be that maybe you did say something unintentionally that somebody took offense to. This is a great way to just show that hey, obviously you didn't mean an insult because look at how much you smile. There's no way you meant to be rude because you smile so much. Neurotypical people are a little bit more forgiving than we think and especially as they get older, forgiving and forgetting becomes something that they can do easier.

So there really is a point to doing this and it really does work. It's amazing how quickly it can work. So just for a week, you can just start the expectation of, "I'm just going to walk down the hallway, smile, make eye contact and say names." Though that's your only expectation, just to do it. I don't want you to worry about how many people smile back at you. I don't want you to worry about how many people say your name or how many people scowl at you. All you're doing is controlling your behavior of smiling, making eye contact and using their names.

Within a week you can start noticing a turnaround. I do think that you will need to stick close to somebody as far as a counselor or a parent, regarding your negative internal monologue. Because it could be that you're so used to kids being mean to you that you think they're going to be mean to you. And just that thought, that fear, might keep you from actually doing this assignment.

So I want you to ignore that internal monologue for this first week while you practice just making eye contact, smiling and saying their names. Now I know that you might be thinking that people don't want you to smile at them or they don't want you to say their name. You might be thinking that they're already talking to somebody and that your talking to them or smiling or saying their name would be rude or interrupt them.

So remember at this point, I only want you to do this while you're walking down a hallway. If you're walking down a hallway and one other person is walking towards you, it's awkward to not try and look them in the eye; it's awkward to not smile. They're going to think that you're rude if you don't do that. So if we're trying to change your reputation, potentially make friends or at least lay the groundwork for that, just smile, look to see if they're looking at you and if they are looking at you, you smile again and then if you know their name, you say their name. This really can turn your reputation around and start laying the groundwork for making friends.

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Announcer: We're your daily dose of science, conversation, medicine. This is The Scope, University of Utah Health Sciences Radio. Dr. Elizabeth Laugeson is the founder and director of the UCLA PEERS clinic and PEERS curriculum developer and today we're going to learn more about what the PEERS program is and what it has to offer individuals with autism. So let's talk about the PEERS program. What is the PEERS program?

Dr. Laugeson: So PEERS actually stands for the program for the education and enrichment of relational skills. Which is really just a fancy term for it's a social skills training program for adolescents and also for adults on the autism spectrum. And so we're trying to focus on things like friendship skills, how to make and keep friends as well as things like how to handle peer conflict and peer rejection.

Scot: And what's the philosophy behind the PEERS program? What makes it different from other programs that might teach the same things?

Dr. Laugeson: Well one thing that makes it different is that it's actually an evidence based program, meaning that we have a lot of research to support the effectiveness of the program. We know that social skills training is really common for people on the autism spectrum but unfortunately the research suggests that most of these programs aren't very effective. That's one thing that makes it sort of unique from other programs.

The other thing is that we include either parents or social coaches, even teachers as additional interventionists essentially, to provide social coaching outside of our groups. So we'll often have co-occurring parent groups, caregiver groups, or we'll even train teachers on how to provide social coaching to teens and adults outside of our group setting, so that's sort of unique.

The third thing that really makes PEERS unique though is that we're teaching what are called ecologically valid social skills. So that's not just we think that kids should do in social situations but what actually works in reality and that's somehow very unusual in social skills training. A lot of times we give kind of bad advice in social skills training unfortunately and not really teaching what kids actually do in reality.

Scot: So you said a little bit earlier that some of these methods that people teach social skills aren't effective. Is that because of different needs between individuals with autism, or is it just we're not good at teaching social skills to anybody really?

Dr. Laugeson: I don't think we're very good at teaching social skills, even when we have good social skills. I think it's one of those things that it comes very naturally to a lot of people and we don't think about why we do the things we do, or even what we do. So for example, common mistakes that people can relate to, meeting new people. Imagine you have a teenager at a party. They don't know anyone. What do you think that most adults would tell that kid to do to go up and meet new people?

Scot: Just go up and say hi.

Dr. Laugeson: That's right. They're told to go up and say hi or they're told to go up and introduce themselves.

Scot: Yeah, sure.

Dr. Laugeson: And then just to think about that would actually look like, to just walk up randomly to a group of people that you don't know and say hi. Or "Hi, I'm Scot," you know, what would they think of you if you did that?

Scot: I struggle with that all the time. And I want you to actually hold that answer for a second. Let's have this be a little cliffhanger. Do you have the right answer on how to do this?

Dr. Laugeson: I actually do have the right answer.

Scot: Okay, hold on to that, we'll find out what that right answer is in just a couple seconds. I love this. This is great. So the philosophy of the PEERS program is social skills based on evidence based, what we've learned actually does work. What are some of the outcomes that you're noticing as a result of teaching these social skills?

Dr. Laugeson: Well we have a lot of different types of programs. Our most common program is a parent assisted program, where we actually teach parents to be social coaches outside of the group. And in those studies what we found is that teens and adults significantly improve in their overall social skills, particularly in the areas of things like assertion, responsibility, cooperation. They improve in their social responsiveness, that's their ability to communicate with people. What we call social cognition, putting themselves in someone else's shoes, kind of taking on the perspective of others.

Also things like social awareness and social motivation, those also improve, as well as just the frequency of social interactions that they're having with their peers and improvements in friendship qualities. So we see lots of changes, lots on improvements across the board in our parent assisted programs. But we also do a lot of research in the schools as well and use teachers actually as social coaches and we get very similar findings there.

But the most exciting research I think we're doing now and the research that we're going to be presenting when we're in Salt Lake next week is actually related to a combination of a parent assisted program with teacher facilitation. So where we're actually teaching social skills in the classroom, much like we would teach math or science or any other subject, but then providing additional assistance by including parents in weekly social coaching groups. And this is kind of a revolutionary idea for teaching social skills in the school setting.

Scot: I love it. I am a communication major myself. I was a late college student and after I had got my degree I thought how come we don't have an interpersonal communications skill at the junior high or high school level? Because there are all these things that go on in communication that were a mystery to me for the longest time and then I learn about them and like "oh, now I get what it means to be a good listener. Oh, now I get when I said that to that person the underlying message below my words was you don't matter." I'm like why don't we teach this And social skills I feel is the same thing regardless of who you are.

Dr. Laugeson: You know, I think that is so true, and it's not just kids with autism that can really benefit from this type of instruction. A lot of people struggle socially. In fact, there's a lot of research that suggests that in any typical middle school or high school in the US there's about 15% of kids that are what we call peer rejected. These are kids who are teased. They're bullied. They might have bad reputations. These are kids that are actively seeking out their PEERS but they're getting pushed away.

And then there's another 15% of these kids that are what we call socially neglected. These are the kids who are very isolated, they're often seen as shy or withdrawn, and they're not even trying to engage their peers. And what that tells us is about 1/3 of any typical middle or high school has kids who are really struggling social, and unfortunately we don't do enough for these kids.

Scot: And not only those that are struggling, but back to the communication thing, which I think social skills and communication are almost hand in hand, it's just assumed that everybody knows these things, right? That you just know how to talk so you know how to communicate but there's so much more and there's so many underlying rules and things going on that some of us just aren't aware of so.

Dr. Laugeson: That's absolutely the case and I think that research speaks to what you're saying there is that you know there are a lot of people who really, really struggle with this.

Scot: Including me. I'm going into that party now. I can still hear my mom saying well just go introduce yourself.

Dr. Laugeson: All right, well do you want to know what you're supposed to do?

Scot: Yes, what should I do?

Dr. Laugeson: Okay, we don't want you to go up and just introduce yourself or go up and say hi randomly. Instead this is what a lot of people sort of naturally do. This is that example of an ecologically valid social skill. These are the things that people do naturally. They don't even think about what they're doing. So imagine you're at the party. You don't know anyone. Before you ever go up to them, you're probably going to try to listen to their conversation, right. What do you think you're listening for?

Scot: The first thing that comes to my mind is how do I approach them? Do I just kind of sidle up to the group and just quietly insert myself? I mean that even seems weird to me.

Dr. Laugeson: That might be a little bit weird. Sidling is probably not a good idea. No, instead you probably want to listen for the topic, figure out what they're talking about. You might even want to sort of show a little bit of interest, maybe look over at the group every so often. But do you think that you should be staring at them, Scot?

Scot: No, I should not be.

Dr. Laugeson: No, instead what you do is you use like a prop. Maybe a cell phone or something like that, maybe you're at a conference you've got your program but you're using some kind of prop to look distracted because really what you're doing is you're eavesdropping but you're trying not to look like you're eavesdropping.

Scot: Okay.

Dr. Laugeson: Okay, so that's the first step, just kind of watching and listening. Let's say you find a common interest, something that you know about and you decide you want to join. Well, before you join you need to wait for something. What do you think you're going to wait for?

Scot: Oh boy, I have no idea. That's how terrible I am at this.

Dr. Laugeson: Okay, well I'll help you out.

Scot: A pause. A pause in the conversation.

Dr. Laugeson: Absolutely, see you're not so bad at this. You're waiting for a pause because you don't want to interrupt the conversation. You don't want to be rude. So you wait for a little bit of a pause. There's never a perfect pause but you move a little bit closer. When there's a little bit of a pause you say something that's on topic essentially. And that's how you basically join a conversation. The introductions come later, and this is something that people naturally do all the time but they don't think about what they're doing. So we take these very natural social skills and we break them down into very concrete rules and steps of social behavior.

Scot: And it's not weird that I'm kind of all of a sudden here I am and I've just inserted something in your conversation where I wasn't here a while ago?

Dr. Laugeson: Well, you know that's where paying attention to the feedback that you get becomes very important. It doesn't have to be weird. This is what people do all the time. However, the research would suggest that about 50% of these what we call peer entry attempts are unsuccessful where you're not accepted. And so you have to pick up on the signs. Now let's talk about that for a second. How do you think you can tell if a group of people want to talk to you?

Scot: If they engage back with me.

Dr. Laugeson: Very good, they're talking to you and they're not giving really short answers or saying rude things. What are they doing with their eyes if they want to talk to you?

Scot: Hopefully, looking at me every once in a while, not staring but.

Dr. Laugeson: Exactly, looking at you but not like rolling their eyes or making a face. And what do they do with their body language that tells you? Where are they facing?

Scot: Open body language, towards me hopefully, not with their backs towards me of their sides.

Dr. Laugeson: Exactly, they're facing you. So they're looking at you, their facing you, their talking to you.

Scot: I got this. This is so awesome.

Dr. Laugeson: You got it

Scot: I can't wait to go, what was it? The social introduction, conversation introduction, what did you call it?

Dr. Laugeson: I call it peer entry. That's the technical term.

Scot: Peer entry.

Dr. Laugeson: But it's basically entering group conversations.

Scot: I like that, peer entry. I absolutely love this. Are there any books or other resources that I mean even I could use to learn more about effective social skills? Anything you recommend?

Dr. Laugeson: Definitely, we actually have three published books as well as an app. So just to let you know what we have out there, we have two manuals. They're treatment manuals for both educators as well as mental health professionals. They're called the PEERS School Based Curriculum and we also have a PEERS Treatment Manual.

But probably more interesting to your listeners would be that we actually have a book for parents, teens, young adults, anyone that's looking to learn about how to make and keep friends and this is not just for kids with autism. This is anyone who is interested in that, and it's called the "Science of Making Friends." And it's meant to be helping teens and young adults who are kind of socially challenged. And it teaches all of the skills that we teach in PEERS but in lay terms.

What's kind of cool about that book is that it actually comes with a companion DVD with role play video demonstrations of these skills. It's one thing to read about social skills but seeing them in action is a whole different thing. And then additionally we have a nice resource called the Friend Maker app, and that teaches all the skills we teach in PEERS in a mobile app for iPhones, iPads, different Apple products. And it has the curriculum laid out in an outline form and there's also 25 embedded role play videos in this app. And so this is also another very affordable way to access the PEERS curriculum.

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Interviewer: Children with autism are more likely to end up in the hospital unnecessarily than children without autism. We'll examine a research study that gives parents and physicians some valuable information and lessons about this topic next on The Scope.

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Interviewer: Dr. Paul Carbone is an associate professor of pediatrics that specializes in autism and related developmental disabilities. You were involved in a recent study called Ambulatory Care Sensitive Hospitalizations Among Children with Autism Spectrum Disorder, and what I'm essentially getting out of this is that children with autism are more likely than children without to end up in the hospital unnecessarily. Is that really what you found?

Dr. Carbone: I think that's true, we looked at a cohort, or group, of children with autism who were hospitalized and we compared them to children in two other groups who did not have autism. We looked at 14 conditions for which they might be hospitalized, we call them ambulatory care sensitive conditions. That's a fancy way of saying that, for this particular condition, if you got good care in your outpatient setting in your doctor's office, you would be less likely to be hospitalized for that condition. So what we found is that children with autism, over half of all of their admissions were for ambulatory care sensitive conditions. Over half were potentially preventable.

Interviewer: So for a parent, this is really concerning because their child's ending up in the hospital where it could have been prevented at an earlier stage. Am I gathering that correctly?

Dr. Carbone: That is correct.

Interviewer: And for physicians that should be concerning because we're missing a lot of opportunities to keep children out of the hospital.

Dr. Carbone: That's what we hope that the findings of these studies indicate that there is an opportunity here to better address these groups of conditions in children with autism in the outpatient setting.

Interviewer: All right, so for parents and physicians, what are some of these conditions that if my child has it or if a child is in my office with it that maybe I should be paying a little closer attention to keep them out of the hospital.

Dr. Carbone: The group of conditions that we studied were derived from various organizations who have defined these conditions because tracking them turns out to be pretty important. Just to give you an idea, ambulatory care sensitive conditions comprise about a third of all hospitalizations in the United States. They cost about four billion dollars.

Interviewer: That's significant.

Dr. Carbone: They count for a million hospital days. So if we're trying to do better care and are trying to do it in a cost efficient way, these conditions are the money. So the conditions that we looked at were things like asthma, pneumonia, constipation, dehydration, epilepsy or seizure disorder, underweight, and mental health conditions which comprise a number of them like anxiety and mood disorder.

Interviewer: So what's happening here? Why are they going out of the office to the hospital with these particular conditions?

Dr. Carbone: Well that's a great question, and these data that we looked at, remember, we're just looking at a group of patients who are already hospitalized. So we can't follow these patients from the outpatient setting into the inpatient setting to look at what are the factors involved that got them into the hospital. All we can say here is that these conditions are more commonly seen in children with autism as a cause of their hospitalization compared with children without autism. But, we can always speculate because that's what we do when we come up with data.

About a quarter of all admissions in children with autism in the United States are for mental health conditions. That is an amazing statistic because the data set that we used called the Kids in Patient Database, or the KID, looks at hospitals across the country. We looked at over two million admissions. A quarter of all admissions for children with autism are for mental health conditions which is amazing because these hospitals aren't psychiatric hospitals, they're medical hospitals. So it really represents almost a failure of the system that somebody would be admitted to the hospital for a mental health condition.

Interviewer: Okay.

Dr. Carbone: So what I think one of the most important implications is we need to address these issues in a proactive way in the office, before they come to a head and the child eventually becomes, what I think probably happened with most of these admissions for mental health conditions, is the child becomes aggressive. Can't be managed at home, is then admitted and then stays in the hospital for that.

Interviewer: What about some of these other conditions?

Dr. Carbone: The other conditions, one that was very prevalent that drove a lot of the differences that we saw between the groups was epilepsy. And that's not entirely surprising because children with autism have a higher rate of epilepsy compared to children without autism. So we know that it's there. The challenge, I think, in the outpatient setting is how do we manage it so that we can reduce some of these admissions, and I think in children with autism if you think about them they're delightful people but they have deficits in social communication and they do a lot of repetitive behaviors. They need sameness all the time.

So how that manifests in the management of epilepsy is that I have a drug that I would use for this patient because of the type of seizure that he has, but he won't take that medicine because he doesn't take pills. So then I have to think of something else. Or, the child is simply not adherent with the medicine thereby necessitating a hospitalization because it gets out of control. So that's just one aspect of treating children with autism. They're not worse, they're not better, they're just different. So you have to have a plan B, a plan C, and a plan D for how to manage their conditions because sometimes they don't want to do plan A.

Interviewer: Sure, or plan B or C for that matter.

Dr. Carbone: Correct

Interviewer: So I think you gave us a couple of good takeaways for physicians, have those extra plans. What about parents. What should parents take away from this conversation?

Dr. Carbone: Well, I think that again, because of the very nature of these conditions, because they are ambulatory care sensitive, we want parents to focus on that relationship that they have with their pediatrician or primary care doctor in the office. And to me, I think it's really about a partnership. I've been taking care of kids in an ambulatory care setting in a clinic here at the university called the Neurobehavior Home Program for quite a while and we really focus on developing a relationship with families so they feel comfortable in telling us everything.

We give them a little bit more time. Our system of care is a bit different and I think that that's one of the problems in the system that we have. Most physicians see patients for five minutes and we really need that to be longer for patients with autism because it may take them 10 or 15 minutes just to get into the exam room.

Interviewer: And at the end of it all, that extra time could result in a child not needing to go to the hospital at some point.

Dr. Carbone: I can address many conditions in a visit, whereas my other colleagues in pediatric medicine can only address one per visit. So it allows me to sort of address some of these ambulatory care sensitive conditions and make sure we're managing them so that they don't escalate to where we're stuck and we have to go the hospital.

Interviewer: So what's next?

Dr. Carbone: These data are the first time that anything like this has been published about ambulatory care sensitive conditions in people with autism. I think they'll be helpful because since they were published in 2009, these data, now a newer version of the KID is coming out, so it presents an opportunity to follow this over time.

We've done a lot of things to help pediatricians take better care of children in the office setting since 2009. There's something called the Autism Treatment Network. The American Academy of Pediatrics has given a lot of guidance to pediatricians on how to manage these conditions in the office. So it will be fun to see over time if we're able to move the needle on the percentage of potentially preventable conditions.

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