Autism Spectrum Disorder in Kids with Chiara Graver M.A., BCBA , COBA

Podcast Transcript

Speaker 1: There's so much health advice out there. Lots of different voices and opinions, but who can you trust? Trust the experts, the world's brightest medical minds, our very own Cleveland Clinic experts. We ask them tough intimate health question, so you get the answers you need. This is the Health Essentials Podcast brought to you by Cleveland Clinic and Cleveland Clinic Children's. This podcast is for informational purposes only and is not intended to replace the advice of your own physician.

Annie Zaleski: Hello, thank you for joining us for this episode of the Health Essentials Podcast. I'm your host, Annie Zaleski. And today we're talking with behavior analyst, Chiara Graver about autism spectrum disorder in children. Autism spectrum disorder is a neurodevelopmental disorder that can encompass difficulties with verbal and nonverbal communication, delayed or absence of language development or poor motor coordination. If your child is diagnosed with autism spectrum disorder, you might have a lot of questions or wonder what your next step should be. Chiara is here to discuss the signs of autism spectrum disorder, as well as therapy, options, and support for families. Chiara thanks so much for being here today to talk to us on the podcast.

Chiara Graver: Absolutely. Thanks for having me.

Annie Zaleski: So start off a little bit by telling us a little bit about your work here at Cleveland Clinic. What do you kind of do on a daily basis? What are kind of the ages of kids you tend to work with on a daily basis?

Chiara Graver: Sure. So I've actually been with the center for autism at the Cleveland Clinic for 10 years. And my current role is, I am the onsite supervisor at one of our smaller outpatient clinics for kids with autism. So we serve children from their earliest diagnosis through school age. So once they're in school, full time, they kind of age out of our services and transition to those school services. At our location, we provide outpatient, occupational therapy, speech therapy, and behavior therapy or ABA to that age group. And everyone is specialized in autism. So I know you can get OT and speech at a lot of different places, but here our therapists are trained in autism specifically, so that's really, really nice. And then we kind of work as a multidisciplinary team and work with the families to treat kind of whatever they a need in the moment.

Annie Zaleski: Awesome. So let's start by first off, tell us a little bit about what autism spectrum disorder is then.

Chiara Graver: So autism spectrum disorder, or just autism is a lifelong neurodevelopmental disorder characterized by deficits in maybe communication, maybe some social challenges, repetitive behavior. Kids might have some restricted interests, but it can also include some challenging behaviors. So every child or every individual with autism is different and they don't all have all of those things, but it can include some of those main points.

Chiara Graver: So, that means that individuals with autism, maybe they can communicate, but maybe the way they communicate is different or the way they interact with us is different, the way they learn is different. And it may be different than what we're used to, but it's definitely something that I think is becoming more well known and accepted.

Annie Zaleski: Excellent. So what do doctors think causes autism spectrum disorder?

Chiara Graver: Well, right now there is no clear cut cause of autism. So research supports that there is likely a genetic component that's identified in like 10 to 20% of cases. Children that have a sibling with autism for instance, are more likely to have an autism diagnosis themselves. Having certain genetic or chromosonal disorders such as fragile X can increase the likelihood that you would have autism. But there's other factors too, like low birth weight, parental age, certain prescription medications that a mother might have taken during pregnancy. This is a really hot topic in research right now, because again, there isn't that definitive thing. So we know that there is that genetic component, but again, it can be a lot of different factors.

Annie Zaleski: So in the past, parents might have heard about terms like Asperger's syndrome or simply heard the word autism use then. And, but a few years ago, the American Psychiatric Association changes guidance to refer to this condition as autism spectrum disorder. Can you talk a little bit about why that change happened?

Chiara Graver: Yeah. So there are a handful of diagnoses that are now under this autism spectrum disorder umbrella, including things like pervasive developmental disorders, and like you mentioned, Asperger syndrome. So, one major issue previously is that there had to be certain conditions met or not met in order to get one of those diagnoses. So for example, autism and Asperger's had a lot of overlap, but specifically for Asperger syndrome, they could not have had like a speech or communication delay. So, you might have all these other characteristics that are very, very popular with autism diagnoses, but because you spoke single words by age two or phrases by age three, you were no longer able to be considered autistic. So. You might have gotten misdiagnosed or fallen into another category.

Chiara Graver: So the thing that is taken into consideration now, right? Is this idea of an autism spectrum. So maybe I am able to communicate, but I have some difficulties with repetitive behavior or in social communication. So instead of just saying that you have Asperger syndrome or you have low functioning autism, they're going to say something like you are diagnosed with autism spectrum disorder with, or without an accompanying cognitive impairment. And then they might give you a level, level one, meaning you need support. Level three might be, requires substantial support, but instead of just saying across the board, you're level three, you require substantial support, now, it can say, requires support for communication, requires substantial support for repetitive or restricted interest. Or requires substantial support for communication, but just requires support for those other behaviors. So it kind of allows that individualization of the diagnosis, but still saying, "Hey, we understand that there is overlap between these."

Annie Zaleski: And that makes a lot of sense for what you, going back to what you said at the very beginning. And that, every child is different, every child has different needs. And so that I like that, because that's a better term to kind of make sure that you're recognizing that.

Chiara Graver: Yeah. And I do think that's something that happened when they kind of looped Asperger in there was that, people felt like they were trying to take away some individuality or kind of change like who they were if they had that Asperger syndrome diagnosis. But I don't think it was done to take that away, it was like you said, you're trying to include everybody on a spectrum and say that, Hey, like you're not defined by this diagnosis or who you are, but we are trying to make sure that we are incorporating everything we know into your treatment, the approach and the diagnosis.

Annie Zaleski: So what are sort of the common signs that might into that a child does have autism spectrum disorder? And are there specific things that parents should be on the lookout for, in their kids as are kind of growing and developing?

Chiara Graver: Yeah. So, the big one is that delay in spoken language or even other means of communication. So when a child is really little, maybe they're not using words to talk, but might bring something to you to ask for help or gesture or use some basic signs to communicate their needs. If you're noticing that you're not seeing as much of that and you have concerns, that's the first thing that I would look at. Sometimes parents will notice that children do some repetitive motor movements. A big one with autism, everyone always is like refers to hand flapping or body rocking and not every child with autism does that or every individual with autism does that. But those are just kind of like easy ones to reference. So you might notice some of those like odd motor mannerisms that could be a child playing, but they do it all the time. So that might be another thing to kind of look out for.

Chiara Graver: Lack of eye contact, or I like to say lack of orienting to a familiar person. So mom comes in the room, calls your name and you're not turning or acknowledging that she's entered that space. Or you don't have that reciprocal smile with a parent or caregiver or somebody familiar to. You. Maybe a child has greater interest in objects than people. Or maybe they're really fixated on certain parts of those objects. So just kind of all of those little things. I also say that parents know their child best and caregivers know them best. So sometimes I'll talk to a family and do an intake and say like what prompted you to go through that diagnostic process? And they'll just tell me like, "I had a gut feeling." So they're like, "Yeah, they didn't talk, but their brother talked a little bit later, but I just felt like something was different." And you should listen to that little voice telling inside that maybe something is different and maybe get that checked out, even if you can't quite pinpoint what it is.

Annie Zaleski: I mean, and that's, I think one of the biggest questions is that, if you suspect something is going on, then what is the first step then? So would you talk to your child's pediatrician? And then would they kind of get a referral to you all? How does that work?

Chiara Graver: Yeah, absolutely. So, the early developmental period for any child is very critical. And with autism there's a lot of resource that suggests that, early intervention is key in kind of addressing some of those difficult and challenging behaviors. So I can't stress enough how important it is just to follow through with primary care. I know that when children are little, it feels like we have a well check every few months, where they're just getting their weight and their height and asking us questions. And it seems like, why are we continually doing this? But at those visits your physician, isn't just checking to see, how much are you growing physically. They're looking at those developmental milestones. Are they talking? Are they walking? Are they social? So it's really, really important to follow up in that sense with your just basic primary care.

Chiara Graver: And then from there have that discussion with your child's pediatrician, they are doing some early developmental scales and things in the office. They might ask you questions and you don't know what they're for, you can always say, "What assessment is this? What am I answering these questions for?" If you need a better understanding. But they'll be able to make that referral and say like, "I think you should follow up with an autism diagnosis." Or maybe they'll even say, "I'm not sure about autism, but we definitely want to get you in speech therapy, your occupational therapy. So let's start there and reevaluate in a month or two." So that's the best place to start.

Annie Zaleski: I was going to say is, some of the things you were describing, like if it's not feels like, they maybe a child doesn't hear their mom, or maybe there's something that's going on with their hearing. So it seems like there could be some other things going on sometimes. That if a parent brings that up to the pediatrician, they might find something else even. So is that pretty common then? Or how common is that?

Chiara Graver: Yeah. So, the thing with autism is, it's not like 10 check boxes where we say yes, yes, yes, yes, yes, autism. So there are a lot of things that overlap with other diagnoses. And you had mentioned like hearing and that's something that they actually ask, like, "Do you think your child might be deaf in one of those checklists?" Because if you go in and call their name and they don't turn to you, that's not automatically autism, that could be a hearing issue or maybe even just an ear infection, something short term. So they can refer you to the... If you need to go to an ENT or maybe they just need to check and see if you need an antibiotic. But there are a lot of things that do overlap with autism.

Chiara Graver: ADHD is something else where there are a lot of similarities between the two. For a while a lot of psychologists wouldn't even diagnose ADHD if you also had autism. But there are like marked difficulties with communication and may be focus. So, it can be really hard to distinguish. That's why I always say it's better to just see what it is, maybe get some additional testing done to rule out or rule in any of those things.

Annie Zaleski: Now, you mentioned that early intervention is so important then, is there a specific age that doctors have found that autism spectrum disorder emerges? Or is that something that just becomes more apparent as maybe a child gets a little bit older?

Chiara Graver: Well, it definitely does become a little bit more apparent as they get older. Right now, a good assessment can probably diagnose a child as early as a year and a half. Some will say one year to a year and a half. But parents and physicians, they typically start to notice that before age three. And around age three, also kids start going to preschool, so that might be another time when maybe you notice it. Because of our current situation with the pandemic, this is something that we're seeing a lot is that, you're not around as many kids, you're not out, don't have as many examples of children to know.? Are they just playing alone because they haven't had a playmate in two years or are they just not interested in other people because they're very shy and they don't know a lot of people outside of the family?

Chiara Graver: So we're starting to see a lot of kids like going out and doing more things. And their parents are saying like, "That doesn't seem like this three year old is acting." So, it's hard to tell because, they're learning so much at that age, but typically around a year and a half, anywhere to three years is a good range to look for diagnostics.

Annie Zaleski: So what sort of testing look like or entail? And how does that work? Because obviously geez, there's so many different tests you can give when kids are that young. They're still kind of growing and developing and a test maybe you would give an older child might be a little bit different then. So what does the diagnosis process look like? Can you walk us through that?

Chiara Graver: Yeah. And unfortunately right now there's no laboratory test for autism, right? So it's kind of an all hands on deck approach. So you'll receive that referral. And before you even go to the clinic, that before you even go for the evaluation, the psychologist that's doing it or the clinic where you're getting, it might send out this huge packet of information to fill out or might send you some rating scales that they want you to share with any caregiver or even teachers at the school. Because they're going to want to review that. When you go in for any kind of evaluation, it's hard to make a judgment based on a 60 minute meeting. So, they want to really make sure that they're getting to know all of the background on that patient.

Chiara Graver: So, a comprehensive evaluation will include that kind of thing, parent ratings, teacher ratings. They'll have the patient come in with their family and they might do a family interview and just ask the parent some questions that maybe you don't want to ask on a form and get some more detailed answers, so you can really understand when they started to notice these things. The clinician will likely do some kind of observation of the patient. And then like you mentioned, it's hard when they're kids. So the assessment that they use right now is the Autism Diagnostic Observation Schedule. You might hear this called the ADOS or the ADOS 2 and it's a semi-structured play based assessment. So, it's used to kind of assess some of those social and communicative behaviors using toys.

Annie Zaleski: So why is it important then that kids receive an autism spectrum disorder diagnosis then?

Chiara Graver: And this is a good question because, it shouldn't really change anything about the child, maybe just our approach. So, the obvious answer is, to open the door to more services, right? If you have that autism diagnosis, it's easier to say, "I need my child to have speech. I need them to have occupational therapy. They need these behavioral supports." So it does open the door to show the need for those services. But as a child enter school, it can also help in that situation.

Chiara Graver: So, maybe knowing that a child has autism can help set the environment that they're in a little bit better or help tailor the learning specifically to that child. It can help them access early intervention service. So like I said, the sooner a child gets into services, the better. Because we know that again, that early developmental stage is so key to everything they're going to build upon as they move forward. And another reason is, Protections under the Americans With disabilities Act. So as a child gets older and enters the workforce, they would have to be provided with reasonable accommodations and they would have better protection in their job based on some of those things.

Annie Zaleski: So something that a lot of parents might ask about is how to explain to their child that autism spectrum disorder diagnosis? Can you weigh in on how best to handle that? And if they're better ways to handle that at different ages of maybe when your child is diagnosed.

Chiara Graver: So this is a really hard thing for families and I don't have the answer of course. But my recommendations are always to first try to see what your child will understand. Obviously, a five year old is not going to understand the same as a 15 year old. And just because a child's 15 doesn't necessarily mean that they're going to understand everything you're saying, just kind of depends on their own level of cognition. So you definitely want to meet a child where they're at. So keep that in mind when you're trying to come up with the best approach. So when kids are really young, they probably need minimal information. So, you want to be positive if they have questions, always answer then truthfully. Kids might start to notice that something is different between themselves and a peer in their class. And it's okay to discuss that with them, but just make sure that you're not putting too much back on them at a young age.

Chiara Graver: As they get older and start to understand a little bit more, they're probably going to have a lot more questions. If you don't have an answer, it's okay to say, "I'm not sure. I'll find out, let's find a solution to go." As a parent, you're going to want to be a little bit prepared for some upset, a lot of information that you might be sharing with them. Kids might know that something feels different or that people are treating them differently, but hearing it and kind of having it all laid out there can be really stressful. So you want to make sure that you're following up with any other supports. If you want them to talk to a therapist or something like that, you want to make sure that you're prepared when you go into these discussions.

Chiara Graver: You always want to tailor your discussions to specific things with your child or their specific experiences. So saying, I heard so and so down the street used to get mad and have... They used to throw tantrums and they were upset, that's not really helpful. But helping your child by saying, "I know sometimes in school you get frustrated when you don't know the answer and you feel like you want to squeeze your hands together and you yell out in class, I understand. And the reason you do that is maybe it's harder for you to find the words to protest or ask for help when you're really upset." So it's better to use specific examples from that child's life. And as a parent, you always want to continue reiterating that you're there for them, that you're going to support them. That there are going to be difficulties and it's okay to point out what those might be, because you want to let them know you're going to help overcome those together.

Annie Zaleski: That deep empathy, and that goes such a long way. And kids kids really, really do pick up on that.

Chiara Graver: They do, they very much do.

Annie Zaleski: Well and parents might also have other kids who might be curious about what's going on with their siblings or would maybe want to know why sometimes they act differently. And their siblings might want to know how they can support them. Siblings tend to be really protective. What are some good things to say? And what kind of resources might be available to them?

Chiara Graver: So with the same as you would approach a child with autism, giving them that information. You want to keep the same things in mind of talking to siblings. So at different ages, they might be ready to hear different things. And it's important just to be honest and give them facts. So, I always tell parents, you can explain why something happening. If one of the siblings sees that their brother is having a tantrum and they're like, "Well, why is he doing that?" You can honestly say he has a hard time telling us that he doesn't want the dinner that we made. And so he's doing that to communicate and protest. You are able to use your words and tell us, but maybe he can't.

Chiara Graver: And younger kids notice things about their siblings, they notice when things are different. So it's always a good thing to kind of point out what's similar as well. So you can say something like, "Well you like going to the park and your brother likes going to the park too. And when you're there, you like to play tag, but he likes to sit on the bench and kind of take in the scenery." And that's okay. We can like the same things and like doing different things there. And I always use this example with my families. I like to run, my husband is not a runner, but if we go to the park, he might sit on a bench and read a book and I go run a few laps and that's okay. We're different, but we like the same environment or enjoying the same thing, and we're both getting something out of it.

Chiara Graver: So that's something that I would use to kind of talk to the younger kids and say like, these things are different, but you also have these things that are not. And for some children with autism, they might be nonverbal or might have limited communication. So it's really important to remind siblings, "Even though maybe they're not talking to us, they can hear what we're saying. So we don't want to talk about them in front of them. We want to talk about them like, they're not in the room. We need to make sure that like we're including them in our conversations. And if we have a concern or we're upset about something they did, maybe that's something that we address with mom and dad in private." And then also, talking to siblings about avoiding, labeling things as good or bad.

Chiara Graver: So we see this a lot where a sibling will come in and say, little Timmy was really bad last night, he was throwing things. So you really want to explain to your other children that, maybe he's not being bad, but maybe again, he's having a difficult time expressing what he wants. And to help him out maybe we can label, like, if he's throwing things, you can say, "Yeah, Timmy, I understand you're mad, let's take a break. And kind of do those things." If your child's in therapy, I would encourage reaching out and seeing if there's a way to incorporate the sibling. We've had siblings come in the past where we just sat down out and kind of help them practice ways to communicate with an autistic child or ways to like modify games so we can all play together. So that's kind of a nice thing that you can do too, is try and incorporate them and teach them skills that can help them better engage with each other.

Annie Zaleski: And I love that, because that again goes back to empathy. You're kind of helping the siblings say, here's how you can relate. And here's how you guys can still connect. Even though it might seem difficult, there are ways you could do that.

Chiara Graver: Yes.

Annie Zaleski: So are there resources, supports available for families overall who maybe might have someone? You mentioned that sometimes young child benefit from maybe they want to see a therapist to kind of. Because they're trying to figure out what's going on then. Does family therapy ever help? In addition to maybe kind of bringing him in for like occupational or therapy or things like that?

Chiara Graver: Yeah. I would highly recommend, raising a child with any kind of disability or chronic condition can be really hard on the whole family. There's lots of appointments that have to be... That you have to take a child to. You might be taking them to different locations. Your kids might go to different schools and that can be really straining on the whole family. So I always recommend if it's possible to kind of, yeah. Sit down and talk to someone, talk to a therapist, just kind of have that discussion and know that there are resources available for every member of the family, not just the child that we're focused on right now. It's also hard because kids might see something, or hear something in school or see something on TV and start to have kind of questions, like how is this going to impact my life? So that's part of having that open dialogue with your kids.

Chiara Graver: I recommend families do check-ins, even if they seems like everything's going okay. Like, "Hey, I know Timmy had a hard day yesterday, how are you feeling about it? Are you okay? Do you need to talk to somebody?" I think that, that can go a long way. And then, if your child's in therapy or even if not, there should be local resource groups. So I know that will provide families with places that they can reach out to for things like a sibling group. So sometimes there's groups for, specifically just for the siblings where they can go and do like art therapy together. So, you've kind of had that shared connection with other siblings, you are getting some time to kind of express yourself and do those one-on-one activities. We've done things here, like having a sibling panel, where other siblings were able to write in questions and some of the older ones would answer. Like what's this like? What's school going to be like? What do I do if my friends start asking questions? So kind of involving them with other families, if possible is a really great resource as well.

Chiara Graver: And then I always give this little advice to families is that, you want to make sure that you're also carving out one on one time for all of your children. Again, raising a child that has any kind of additional needs can be difficult and you focus a lot on them. You don't want to forget about the other kids, even if that means you're just spending an hour on Saturday with them watching TV or you take them for ice cream, you want to make sure that you are having those special moments with everybody.

Annie Zaleski: So when parents learn a diagnosis, it might be very difficult emotionally to handle. They might be an and denial, maybe they don't want to tell anyone else within their family. What do you tell them? What's some good, helpful advice in the situation?

Chiara Graver: Well, getting that diagnosis can be really hard and some people do need time to process. The first thing I would say is, get on the phone and whatever services were recommended, get on the list, get an appointment. That way you can actually talk to somebody in the field. So we'll have families call here and set up an appointment and we bring them in and we might be the first person they're telling outside of their physician. And sometimes it's just nice to tell somebody else and not be judged. So I think a lot of times there is that fear of judgment from other people and that's, what's holding you back. But as a parent, you have a child and you have all these expectations and these hopes and these dreams and these goals for your child. And then hearing that they have a diagnosis of kind can be very, very hard.

Chiara Graver: So sometimes parents need time themselves to kind of cope with that before they're willing or ready to share that information with other people. And in that situation sometimes you'll get there sooner than others, but parents need to put on, like on a plane, you need to put your own mask on first. Sometimes you aren't going to be able to take the best care of your child and help everybody be good advocates or build that support system until you take care of yourself first. So you might need a day or two to kind of sit with that information before you're ready to ask for help. Some people might need longer, but it's really important that you don't... I would really recommend not keeping it to yourself because, it can be really hard and you might need to lean on other people to pick up kids or get them to appointments, especially if you're trying to juggle a family and work. So you're going to need those resources and people are a lot more understanding than you think.

Annie Zaleski: And it's true that every family is different. Some people are more private than others and other people, they're so worried. And it is very true sometimes that sometimes, in your head it can be so much bigger and something can seem so much more overwhelming than if you just tell someone in practice.

Chiara Graver: Yeah. That's why I said sometimes it helps like, even if we're the first person you tell, just telling somebody. And even going into a situation like, parents will come here and see other parents lined up at the door with their kids waiting to get in. And they kind of feel a sense of like, "Okay, I can do this day by day. There's other people going through this." That kind of helps too.

Annie Zaleski: Well, relating to the work that you do at your center, then. So you mentioned at the top of the interview, there are many different kind of therapies that are available. So how do you come up with the right treatment approach then? What kind of goes into that?

Chiara Graver: If you know one person with autism, you know one person with autism. And even though it is a little bit of a cliche, it's true. Because, you can't have two autistic people next to each other and assume that they're going to have the same life experiences, the same level of communication. They're very, very different. So treatment often then becomes difficult because, you can't just say here's a one size fits all solution. It's not like you are injured, and they say, "Take two pills every six hours for four days and make sure you keep it elevated." No set treatment or course of treatment for autism. So what's going to happen is, you're going to get this diagnosis and they're going to recommend different therapies. They might say OT, speech, ABA, PT, parent training, those types of things. And you are going to have to go through and decide what you think is going to work for your family in the moment and start from there.

Chiara Graver: It might be building up slowly, all of those things, maybe you want to dive head first into everything. But, what will happen is each of those disciplines will do another evaluation on your child, not to give them a diagnosis, but to look at where there are areas for improvement within different domains. So after getting those different assessments, each therapist will have their own treatment plan. So they'll write their own goals for a child. So speech goals would be different than occupational therapy goals. But once those are all completed, it's really important to coordinate care with each other.

Chiara Graver: So maybe I'm not implementing occupational therapies goals, but it's important that we all know what's going on because then what happens is, you have too many cooks in the kitchen and too many different people giving parents too many different pieces of advice and none of it lines up. So it's really important that once everyone has their own individual treatment plans, we work together as kind of a multidisciplinary team that even involves us reaching out to schools and saying like, "Hey, how are they doing? how are they doing in the classroom? Is there anything that we can do to help support you? How are you responding to this?" So that we're all kind of on the same page.

Annie Zaleski: And that makes sense, because everything influences each other at the end of the day. If someone improves in one area, maybe that'll give them confidence and that'll influences something else. So that's a great way of looking at it.

Chiara Graver: Yeah. I think so.

Annie Zaleski: So talk a little bit about then each type of therapy and kind of like, and how it can help. Starting, I guess maybe with occupational therapy.

Chiara Graver: Sure. So, every therapy I think has its place in like comprehensive treatment package. So occupational therapy or OT will look at how a child plays, how they care for themselves, how they work, across a variety of domains. So that can include social skills, cognitive abilities, motor skills. I know with OT, we a lot about the fine motor skills. But building your repertoire of skills in each of those areas can help make a child more independent and rely less on other people to do things for them. Also occupational therapy, those therapists have a great understanding of kind of the sensory needs of a child and ways you approach those or respond to those. So, I know we have a wonderful occupational therapist here and she's so great to go to say like, maybe it is too loud, let's teach them to request some noise canceling headphones so they're able to focus a little bit better. So, even though that seems like something very simple, it's nice to have that kind of approach where they can say what let's address the sensory needs as well.

Annie Zaleski: So talk a little bit about kind of speech and language therapy. Because you've mentioned up front that there can be speech difficulties or delays associated with autism spectrum disorder diagnosis.

Chiara Graver: Sure. So I think the first thing people think of when they hear speech therapy is, just talking, right? But it addresses so much more than that. So, maybe a child doesn't talk, but they use nonverbal language or sign language or simple gestures just like pointing. Speech can also address if, maybe if a child isn't talking but they're ready, there's something called alternative and augmentative communication or AAC, where we can work on teaching them to exchange a picture to request what they want. Or to use, you might see a lot of individuals now using iPads that have predetermined cell selections on there to make their choices. So that would be an SGD or a speech generating device. So they can work on those things. But because communication is so important, I mean, I think that every child could probably benefit from a little bit of speech therapy. But when we see kids having those challenging behaviors, a lot of that is them trying to communicate.

Chiara Graver: So I'm going to throw something because I don't want it and I don't know how to tell you, I don't want it and get you to listen or in a way that you'll understand. So it's so important. Speech therapists can also work on things like, motor control or jaw control. So maybe a child is able to talk, but they're difficult to understand because they don't have like strong control of their jaw, they can work on that. They can work on making articulation clear. They can also help a child, not just saying things, but when to say it, how to say it, what context is appropriate, pragmatic language. So, it's such an important part because that is one of the hallmarks of autism, is the difficulty with communication.

Annie Zaleski: How does physical therapy then also kind of play into this care plan?

Chiara Graver: So, just like any other therapy not every child will need physical therapy. But they work on those, I say, OT works on those fine motor skills, where PT works on those large gross motor skills. But as far as things that would benefit a child is like, if you just think about like navigating your environment. So, to come here to our center, you can take an elevator or you have to walk up a flight of stairs. So it's really important that you have like the coordination and balance to do that, to get to the places you need to go and PT can help work on that. So really helping build strength, build those muscles, understand like, going up flights of stairs, even something as simple that, improving in those areas can help a child better access their environment and can kind of open the doors to help them explore a little bit more.

Chiara Graver: So if they're able to go run on the playground, maybe they're not going to play with other kids right away, but they're able who start learning like, "Oh, this is something fun I can do." So it's a really important piece of the puzzle.

Annie Zaleski: So talk to me a little bit about applied behavior analysis or ABA. Which is one of the approaches that's also kind of come up. What is this and what does that entail?

Chiara Graver: So, applied behavior analysis, ABA, that's what we call it is, based on the science of learning and behavior and uses what we know about behavior to improve behaviors that are socially significant in some way. So, that would be something that's going to be really important for a child long term. In ABA it's important to note that we don't say behavior just to mean something negative. A behavior in our world is anything that can be observed, defined, and counted. So I can count how many times somebody smiles in five minutes and that's a behavior. So I don't want anyone to think that we're using behavior as just a negative thing. ABA is an evidence based approach to behavior modification. So we're continually looking to our large bodies of research to support interventions, strategies that we use in our sessions and using our main teaching tools of prompting and reinforcement.

Chiara Graver: So an ABA session, when a child comes in is going to look different for everybody. And that's highly dependent on their skills, their age and that sort of thing. So, our clinic we're focused on early intervention. We have children, like I said from 18 months up until eight years. So there's a lot of our time spent on the floor, playing with toys and trying to incorporate the activities that our patients are interested in. So when you're working with a two and three year old, if you go to a preschool, you're not going to go in and see rows of children sitting at desks, raising their hands, listening to a teacher at the front of the room. You're going to see them running around the room. There's going to be some dramatic play areas. There's going to be some table activities set up. You're going to see them on the floor, singing songs. And that's what our sessions will look like for our younger kids.

Chiara Graver: I know that discrete trial is, if you look up ABA, a lot of times you see that video of somebody sitting at a table showing two cards saying, "Touch red, touch blue." That's a tool that we can use, but with the little kids we really aren't doing that, we're using their interests. So my friend Liz uses this example and I can't think of a better one because it's just a great way to demonstrate how we teach in a natural way. But if a child is really interested in playing with cars, we might get out a car ramp and a big box of cars and have them request them. So they're practicing, asking for their wants and needs. We might have them label the colors or say, "Hey, touch blue. Yeah, here's the blue car." And give them that car to play with.

Chiara Graver: We might have them imitate us driving up and down the ramp or line them up a certain way to practice a pattern or have them count the cars. We might practice, turn taking so we can use toys and activities that they like to make it fun. So I think that again, when you look at what ABA is, we're talking about prompting, reinforcement, a systematic approach to modifying behaviors. But also really looking at how we do it to make sure that our kids are engaged.

Annie Zaleski: So why, the approach of modifying behavior then, why is that so effective? And why, to kind of help the child rather than maybe vice versa.

Chiara Graver: So previously I mentioned the idea of a socially significant behavior and a good ABA program should really only focus on socially significant behaviors. So those are going to be things that have a significant impact on the child's life. So the question we ask are, could the behavior that we're addressing, could the behavior that we're targeting cause harm to the child or someone around them? If so, that's probably something that's socially significant, right? Because you don't want anyone to get injured. Is the behavior something that is limiting their ability to learn. If they're engaging in behaviors at such high rates that they're losing out on instructional time in the classroom, or they're not able to pick up new skills that might be a cause for concern. And the third thing we look at is, does it limit their access to their environment? If we have a child that runs away from their parent, anytime they're in a parking lot, that could be really dangerous.

Chiara Graver: So maybe the parent stops taking them out as much. And now they're not really like having those experiences that they were before. So when we talk about social significance, we look at those things. I used hand flapping earlier as an example of just a behavior that people attribute as autism, it's one of those just repetitive behaviors that kids do. If they're flapping and they're not hurting themselves and they're still learning and engaging, there's no reason that we would ever address that type of behavior. Because it's just something we all have our own little quirks and it's just something that's part of that child, it's who they are, it's how they're expressing themselves. So, when we're talking about trying to modify behaviors, we're talking specifically about those ones that can have that big impact.

Chiara Graver: I have a mom one time that said that, "He likes to flap," and she doesn't care and "Flap away little birdie. Fly high as the trees." And I love that because, that's part of that child. And we would never want to change that, just kind of making sure that we're keeping everybody safe is the big one.

Annie Zaleski: And so that's, the way you say that then, and the way you frame that then, that ABA is not trying to suppress neurodivergent, it's more trying to make sure that the kids are able to stay safe. And if they're potentially, just might need some nudges to know how to keep themselves safe. Or might not be aware that, hey, maybe I'm doing something that might be dangerous at some point.

Chiara Graver: Yeah, exactly. And I know that, this is one of those hot topics where if you Google it, you're going to get a lot of information. Just like if you look at restaurant reviews, they're all pretty negative even though it's a pretty good restaurant because, you're more likely to talk about a bad experience you had. And I think that in the field of ABA we've really come a long way, even in the last 20 years, where there is a push. I love this push for neuro divergence because like I said, I don't care if you flap, we all have things that we do. People bite their nails, people chew on pens and no one has a problem with that. So I don't... It doesn't make sense why we would want someone to stop rocking their body if they're happy.

Chiara Graver: So I think that, it's really important to kind of even use the interest of a child in their learning. And we talked about autism, some kids might have restricted interests, but so do adults. So there's no reason that we can't utilize those. I have a child who was very much into roller coasters and that's all we about, and it was really hard to get things done until, we made a token board where he would earn the cars of the train on the rollercoaster. And when he had all five of them, then he got to go take a break. Or instead of just having him count random beads, we had him count people in line to ride a rollercoaster. So really incorporating, even if they're really restricted interest to us, incorporating that into a child's treatment, into their therapy can really be an effective tool. And I feel like it's something that people need to do more of.

Annie Zaleski: I mean, yeah, because you're into roller coasters, then as they get older, you can talk about engineering, you can talk about building, there's all sorts of worlds that can open.

Chiara Graver: Yes.

Annie Zaleski: So, you mentioned early intervention offers many benefits and that's kind of the area you work in as sort of younger children before they reach school. But, there's people get diagnosed later sometimes. And I would think that would still have benefits then. So what are the benefits of getting diagnosed maybe later maybe if you're in school or beyond, or maybe if you're an adult?

Chiara Graver: As you look towards going into the workforce, there are accommodations available to individuals that do have the diagnosis for autism, under the Americans with Disabilities Act. So, maybe you're an adult and you're noticing you're having a hard time at work. Maybe you are always suspicious that, "Autism, that kind of sounds like me, but I don't need anything." But now you're really struggling, and you're like, "Maybe I should just find out what it is? Is it something that I can work through on my own? Is there something where I could get some access to supports?" So that could be really helpful. Early intervention is important, but also a three year old doesn't have all the skills that a 16 year old has in any situation. So as kids grow and learn in development, sorry, as kids grow and learn and are influenced by their environment. And they start to have life experiences and go through different things, maybe they didn't need any supports when they were younger, but maybe now they're trying to navigate the teen years and that's a struggle.

Chiara Graver: So I think there's value to going ahead and getting an autism evaluation if you have any suspicions. Because even as you get older, things can change. You might have the easiest childhood and you floated by just fine, but puberty hits really hard and now we're struggling. Or maybe we had a really difficult time when we were little, we're in school full time now are doing great, but we're moving and I have to change to a brand new school and I'm going to have a hard time dealing with all those changes. So, there are benefits to getting the help you need at any age or stage.

Annie Zaleski: And I like that too, because that also kind of points to the fact that, as people grow up and the people change their needs change and they might need more support or different support. And that just goes back to the individuality that we spoke about.

Chiara Graver: Yes.

Annie Zaleski: So is there anything else you want to add then? We've had a really comprehensive conversation. Are there any points that you want to share?

Chiara Graver: I just always want to remind families that A, it's better to know so you can get the support that you need. But B, having that diagnosis doesn't change who your child is. If you get diagnosed on Tuesday, your child is the same person that they were on Monday. Your expectations may need to change, we might need to change we approach them and how we're going to teach them. But it is the same kid that it has always been. Their personality isn't different ,who they are is not different. So, I just always like to reiterate that to family, like it can be scary and like I said, it can be life changing. But, they are your same child, you are their biggest advocate, you're their number one fan, you're their support system and we are here to help you with all of that.

Annie Zaleski: That's wonderful. Thank you so much for being here today and sharing so much. This has been really an illuminating conversation. I think it's going to help a lot of people.

Chiara Graver: Well, thank you.

Annie Zaleski: To learn more about Cleveland Clinic Children's Center for Autism or to schedule an appointment, please visit clevelandclinic.org/autism or call 216-448-6440.

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