Autism in Children: Your Questions Answered with Dr. Cynthia Johnson

Podcast Transcript

Nada Youssef:   Hi, thank you for joining us. I'm your host Nada Youssef, today we're talking about autism. In 2018, the CDC determined that approximately one 1 in 59 children is diagnosed with an autism spectrum disorder, ASD. That's 1 in 37 boys, and 1 in 151 girls. The range of severity of symptoms can vary widely. We'll also be taking your questions live, so if you have any questions regarding this topic please leave in the comment section below. For today's topic we have with us Director of Cleveland Clinic Children's Center for Autism, Dr. Cynthia Johnson. Thank you so much for being here today.

Cynthia Johnson:  Sure.

Nada Youssef:   If you want to just take a few moments to introduce yourself?

Cynthia Johnson:  Sure, I'd be glad to. I'm again Cynthia Johnson, I am a behavioral psychologist. I've been in the field for about over a little over 20 years, I joined the center for autism in June having been at the University of Florida, and the University of Pittsburgh previously where I ran the center for autism at Children's Hospital. I'm glad to be here.

Nada Youssef:   Great, thank you so much for being here. Before we begin, please remember this is for informational purposes only and it's not intended to replace your own physician's advice. All right, so let's get started. First of all, let's talk about what is autism?

Cynthia Johnson:  Autism is a neurodevelopmental disorder characterized by deficits in two areas, the first being socio-communication deficits. Not just deficits in communication, but using communication to engage socially, as well as restrictive and repetitive behaviors which can take the form of repetitive movements, restricted interests in various topics, using words repetitively. So a whole range of behaviors.

Nada Youssef:   Are there main symptoms or signs of autism?

Cynthia Johnson:  The two main symptoms are socio-communication weakness, as well as restricted and repetitive behavior. Those are our diagnostic criteria, but along with the symptoms associated with autism spectrum disorder are a number of co-occurring issues as well.

Nada Youssef:   Now what kind of socio-communication are we talking? Are we talking about eye contact?

Cynthia Johnson:  Eye contact ... use of eye contact, use of gestures, so nonverbal communication. For a young child, that might be waving bye bye, pointing ... the lack of point to communicate, or just to show something of interest to a parent, and then communicating with our hands. It's not just maybe being delayed in verbal communication, but being delayed in use of nonverbal.

Nada Youssef:   At what age are we able to identify a child with autism?

Cynthia Johnson:  Early identification is an area we've really made great strides in recent years, in picking up these behaviors within even the first year of life.

Nada Youssef:   Okay. Can we explain a little bit to our viewers and listeners how people with autism process, sensor information very differently?

Cynthia Johnson:  That's a great question area that we have so much more to learn in terms of why sensory input is troubling to individuals with autism, it probably has to do with the differences in just processing all information coming in. That's just an area we need to do a much more research in. At present what we can do is to accommodate and acknowledge those differences to make individuals with ASD more comfortable in whatever environment they're in.

Nada Youssef:   Now, with children with ASD, do they have similar symptoms or does it vary widely?

Cynthia Johnson:  Yes, symptoms can vary widely based on developmental levels. We may have children who have significant delays in their development, to children who show very few delays but just a characteristic of ASD. Depending on developmental level might be differences in how they present these behaviors such as socio-communication deficits, and their restrictive and repetitive behaviors.

Nada Youssef:   What about adults? Adults and autism? Is that pretty common?

Cynthia Johnson:   Of course, these children do grow up to become adults and they will vary in terms of their need for support. It may be an individual who is incredibly gifted, who goes on to college, but may need to have some supports to help them organized, help them in social situations to be successful, to individuals who are adults with ASD who may need to have more supports, and live in an environment that gives them support around the clock.

Nada Youssef:   Then can we talk about causes?

Cynthia Johnson:  Sure.

Nada Youssef:   Do we know the causes?

Cynthia Johnson:  Yeah, again we've made progress in this area, we're not where we would like to be. We know that it is a disorder that has a very complicated generic picture. Again, just in the last decade we've made gains in what our knowledge is. I just gave a talk on Friday and I said this is an area where the more we learn, the more we need to know.

Nada Youssef:   Yes.

Cynthia Johnson:  We know that there's probably environmental contributors interacting with the gene picture, but again this is an area we're still learning a great deal about.

Nada Youssef:   Specifically what are the environmental factors?

Cynthia Johnson:  There's been some risk factors that include ... prematurity is a risk factor. Again that doesn't mean a child who is premature is going to have autism, just puts them at higher risk. Actually older parents are a risk factor, and then some of the epidemiology studies now are uncovering some environmental pollutants that may be contributory. Again, not every child that's exposed to pollutants is going to be diagnosed with autism, but it's a higher risk. It's probably some interaction with a gene profile.

Nada Youssef:   How is a child diagnosed?

Cynthia Johnson:  Right, good question. A child is diagnosed by doing a very comprehensive interview with their caregivers, their parents. Then we have some gold standard diagnostic measures where we work with the child to see how they interact with specialized materials, and then we also want to get as much information from that child's therapist, from the child's teacher. It's important to get as much information to get the picture and determine that the child meets our diagnostic criteria for ASD.

Nada Youssef:   So if I had a child that I think may have autism, it would like an interview style to find out-

Cynthia Johnson:  Mm-hmm (affirmative), right.

Nada Youssef:   ... how they react to certain [crosstalk 00:07:10]?

Cynthia Johnson:  Right, that would be a starting place, but then working with that child, and again get as much input from other people that know that child. That's really important for us to listen as clinicians who are diagnosing a child with ASD.

Nada Youssef:   Great. How about treatments? Any treatments that we can talk about today?

Cynthia Johnson:  Sure, it's one of my favorite subjects, and again a place where we've made considerable progress in the last 15 years. Today, the primary treatment is intensive behavior therapy, you'll hear the words "Discrete trial training, verbal behavior" but it's all out of the field of applied behavior analysis. That has the strongest empirical basis to be shown to be effective to address both the core features; the socio-communication deficits in autism, but also a lot of the co-occurring issues that children with autism present with.

Nada Youssef:   Are there medical issues are usually accompanied with autism?

Cynthia Johnson:  Mm-hmm (affirmative), yeah.

Nada Youssef:   Can you talk about this?

Cynthia Johnson:   Unfortunately yes. Children with autism, about 25% of children with autism will have a seizure at some point, so they're at much higher risk for having epilepsy that needs to be treated. They do tend to have higher GI issues, we're not sure if that's part of autism or the fact that they also are very selective in what they eat that puts them at risk for some of those issues. They have considerably more sleep disturbances. I mentioned food selectivity, they are very picky about what they eat. That then puts them at risk for nutritional issues. Medically they need to be closely monitored to make sure they we're catching any co-occurring medical issues.

Nada Youssef:   With the GI issues that they may be having, is there a diet that's best linked to ... not treat it, but keep under control?

Cynthia Johnson:  There was thoughts in recent years that wheat and dairy free diet would be of use, but that really hasn't panned out to be helpful and it's a great deal of work. I actually did a study of a gluten casein free diet, a few years back, and it's expensive for families to do, and we just didn't see any improvements as a result of adhering to that diet.

Nada Youssef:   I see, so there is nothing that is-

Cynthia Johnson:  No.

Nada Youssef:   Okay.

Cynthia Johnson:  Unless there is a medical reason for them to not-

Nada Youssef:   Sure.

Cynthia Johnson:  ... be exposed to dairy or gluten.

Nada Youssef:   Okay, great. How about technology? Is there any new technology that is useful treatment?

Cynthia Johnson:  Right, so you'll see ... if you visited here at our school, you would see all the children walking around with iPads ... not all, but a lot. They would be walking around with iPads with communication system on the iPads for them to use. Again various levels depending on the child's skills, whether it's reading something from the iPad, a picture on the iPad. I'm actually very excited about the use of technology to help support these individuals to the delivery of treatment. I was just funded a study where we're going to deliver an intervention via telehealth to [inaudible 00:10:34] parents, so in that way we'll be able to reach more families that might not live close to a center based program.

Nada Youssef:   Sure. I know you're very involved with the research?

Cynthia Johnson:  Yeah.

Nada Youssef:   So let's talk about some of the research that you're doing, I know you do something with sleep disturbances?

Cynthia Johnson:  Yep.

Nada Youssef:   Okay.

Cynthia Johnson:  This newly funded study, we will recruit 90 young children. Again, they can live anywhere. It will be delivered via the Cleveland Clinic telehealth system Express Care to no charge to the family.

Nada Youssef:   Oh great.

Cynthia Johnson:  So families will actually be able to get the intervention, and we will compensate them for their time. We will compare this parent training program specifically targeting sleep disturbances compared to parent education program that we've used before that families find useful, so regardless of what arm of the study they are randomized to, they get some specialized information.

Nada Youssef:   Is it pretty common for kids to-

Cynthia Johnson:  Yeah. Some estimates like up to 80% children-

Nada Youssef:   Wow.

Cynthia Johnson:            ... with ASD have some type of sleep problem.

Nada Youssef:   Wow. How about disruptive behavior, and then ... I know we talked about early intensive behavioral therapy. We can maybe get into that a little bit more?

Cynthia Johnson:  Right. Yeah, they are kind of tied together too, right?

Nada Youssef:   yeah.

Cynthia Johnson:  Maybe two years ago we completed the largest randomized trial of psychosocial intervention, and in that study we were specifically targeting disruptive behaviors. About 50% of children with ASD also had disruptive behaviors, which can be even more interfering in their daily lives, and their co-features of autism. So tantrums, having meltdowns, being aggressive towards others, engaging in self injurious behavior, so aggression towards themselves which is very very stressful to families. Our treatment for that was 11 sessions of working with parents one on one, and at the end it was found to be very effective.

Not only did it do decrease these children's disruptive behaviors, we were able to demonstrate parents who received this intervention their levels of stress went significantly down compared to our controls. Then segway into early behavioral intervention, is again we were ... that's where we've made some games to show how effective we can be. I was fortunate enough to receive some additional grant funds to study early interventions of how people go about doing it as usual compared to more less intensive but more targeted where we'll fold in our disruptive behavior treatment, our sleep interventions, our feeding interventions.

That hasn't started yet, that's a five sight study with several other institutions that will be participating, so we're really excited about getting that going. Again, the benefit for families is to get these interventions quickly, and to be involved with research teams that are very familiar with ASD.

Nada Youssef:   Yeah, there's a lot to do.

Cynthia Johnson:  Mm-hmm (affirmative).

Nada Youssef:   Sounds like you're doing a great job. Well, I want to ask you one more question, then we're going to go to some live questions.

Cynthia Johnson:  All right.

Nada Youssef:   Why early intervention is crucial? I know we talked a little bit about that-

Cynthia Johnson:  Sure.

Nada Youssef:   ... but we can [crosstalk 00:14:11].

Cynthia Johnson:  Well our thinking is that the earlier we can intervene, that we can offsets with these cascade of disruptive development, instead of close the gap of these children's developmental differences. I think we're seeing that, so for example when I first got in the field, the statistic was around 70% of children with ASD also had an intellectual disability. That statistic now is around 50%, and I think we can attribute a lot of this to the fact that we intervened much earlier than we once did and can offset some of those differences.

Nada Youssef:   Sure. And there are signs before the age of one that you can-

Cynthia Johnson:  There are signs within the age of one, we're getting better and better about going younger and younger and seeing risk factors. We've learned a lot from a series of studies which I wasn't part of, but looking at babies ... so siblings of ... who have an older sibling with autism. Picking up those babies and studying those babies early has leaned a lot of light on what signs we can look in that first year of life.

Nada Youssef:   Sure, very good. All right, so if you guys again have any questions make sure you put in the comment section below. We are getting some live questions here, I'm going to start with this nice long one. Karen, "I have an adult son with high functioning autism, Asperger's. He's 27, takes two classes a semester majoring in computer science and engineering. He completed his first of three required co-ops, but struggle because there was no real mentor for him. He has also been struggling to get another co-op. The other problem he had is that outside of us, he has no social life. We've been to several psychiatrists, but it seems like they don't know how to work with adults in spectrum. He also suffers with depression and anxiety. We live on the west side of Cleveland, he doesn't drive but I retired early so I can drive him. Looking for support, a job coach, help dealing with his frustrations. Thank you for supporting parents and siblings, would also be nice.

Cynthia Johnson:  Karen, that is a lot. I want to say I'm so glad to hear that he's doing well in classes, and identified ... I'm assuming these areas; computer science and engineering are strengths. Unfortunately this profile of not having social connections is one we hear often, that then puts individuals in further risk for depression and anxiety. You made me realize I should have mentioned that individuals with ASD are at higher risk for anxiety and depression. I'm glad he's seeing a psychiatrist, I'm guessing they are addressing those issues.

 As I mentioned in the beginning, I am new to Cleveland so I've not learned the adult programs in the area. However, it's just a real issue for adults like your son across the country getting a social supports. I know one place that individuals with ASD who are in college is that colleges are improving their support system, so the counseling centers at the universities. I came from University of Florida where they have a counseling center that offer those supports, I'm wondering if you've looked there. Again, I barely know what west of Cleveland is-

Nada Youssef:   Looks like-

Cynthia Johnson: ... I would check with your son's college to see if they have any supports.

Nada Youssef:   That's another issue, I mean education.

Cynthia Johnson:  Right.

Nada Youssef:   With a kid with autism. Some kids can't sit in one sport and just learn the way everybody else learns.

Cynthia Johnson:  Right. But obviously Karen's son has made it to college, sounds like he's taken a lower course load, which I hear often too. Kind of need to go slower, so not becoming overwhelmed. Then on top of that if he's suffering from depression and anxiety, he needs to address that for overwhelming him. I think again we've made progress in being flexible to our learners, you one place is online these days. There's so much being offered online where individuals can pace themselves, which benefits many people-

Nada Youssef:   Sure.

Cynthia Johnson:  ... but particularly individuals with ASD.

Nada Youssef:   Sure, great. All right, next question I have is Tom, "It seems like there are so many kids being diagnosed with autism, is it considered an epidemic?"

Cynthia Johnson:  It's considered a huge public health issue, and a high prevalence. I'm not sure if it meets criteria for epidemic, but I think that the increase in prevalence can be explained part by our much better identification and awareness than it once has.

Nada Youssef:   Great. Rebecca, "I have heard people refer to Asperger's as autism, is this true? And what are the differences?"

Cynthia Johnson:  Right, great question. Asperger's was used in our earlier diagnostic criteria under DSM4, with our change to DSM5 in ... now it's five years ago. I used to say it was just last year, now it's five years ago.

Nada Youssef:   Time flies.

Cynthia Johnson:  The term Asperger's is not in our diagnostic criteria. Asperger's was referred to individuals who by definition had no language or cognitive differences, but showed signs consistent with autism in the other areas. Certainly there are people that were diagnosed with Asperger who continue to use that label, which I think is perfectly fine. But we don't give that diagnosis anymore.

Nada Youssef:   All right. I have Sarah, "Is there help for young adults with high functioning autism?"

Cynthia Johnson:  I think that goes back to Karen's question. Yes there's help. Is there enough? Probably not. As the field became better and better about early diagnosing, we have diagnosed more children who have become ... aging up. There are system barriers that have not allowed us to develop as many interventions and test those interventions too. Part of it has to do with child services versus adult services, so yes we need to do a better job, yes we need to figure out how to help adults with ASD and give them the support they need.

Nada Youssef:   So when your child gets an autism diagnosis, will you find out where they fall in the autism spectrum right away?

Cynthia Johnson:  We give families feedback about the severity within the domains, and then any information about the severity in terms of their developmental differences and it's important to keep those separate. You can have a child who may be exceeding their peers in cognitive development, but still have symptoms of autism that are getting away with daily functioning. You may also have a child whose development is far behind that we need to start a different place with intervention.

Nada Youssef:   Sure. Lawie, "My nephew is now six years old ... and ten months. Six year and ten months old-

Cynthia Johnson:  Almost seven.

Nada Youssef:   Yeah, almost seven. "He started speaking at five-

Cynthia Johnson:  Wow.

Nada Youssef:   ... can he lead a normal life?"

Cynthia Johnson:  Possibly. He is on the leader side of starting to talk, but what we know now is the fact that he's talking, and if he's using it functionally, he has a good prognosis to continue to make progress.

Nada Youssef:   Great. Then Grace, "Can children learn vocational skills to go on and have careers?"

Cynthia Johnson:  Absolutely. But again I think that's where when need better data behind when to switch gears with children with ASD, when to go down a vocational track versus a straight academic road.

Nada Youssef:   Sure. Then Lora wants to know, "What are the causes of autism, and is it genetic?"

Cynthia Johnson:  We think it's highly highly genetic, but the picture is very very complicated with many many genes implicated. We're still learning a great deal about that, and then we also think there are environmental risk again we need to learn more about.

Nada Youssef:   Okay. Then Ann wants to know, "How will I know if my child has autism? Is there a test for it?"

Cynthia Johnson:  Yeah, there are some gold standard measures that we use to diagnose autism. The most common one you'll hear about that we do with the child is called the Autism Diagnostic Observation Schedule Two ... 'cause it was revised, there's also something referred to as The Autism Diagnostic Interview Revised which is a lengthy interview. Most clinicians might not do that full interview, but they're going to ask many of the same questions to get at the child's developmental course 'cause that's really important in the diagnosis. Again, we have some specialized questionnaires, we have parents, teachers, therapists complete. All of that information is pulled to make the diagnosis.

Nada Youssef:   So knowing that many children probably don't speak until maybe later in life, how do you the interview questions? Or do you just see the interaction between parents and-

Cynthia Johnson:  With the child we do some structure play, for the young child some structure play activities, see how they react to us, see how they react to their family. We look at are they ... if they are late in talking, are they using backup systems? So are they using gestures to communicate their wishes and wants? Because even children that have a language delay are still communicating ineffectively in ways that children with autism don't.

Nada Youssef:   Okay, great to know. Lisa, "What is the treatment for autism?"

Cynthia Johnson:  Currently for the core features of autism, social communication deficits, restrictive and repetitive behaviors, primary treatment is behavior therapy. So therapies out of the field of applied behavior analysis. For individuals with other co-occurring issues like the early caller who had a son with ASD, but also depression and anxiety, medication may be part of the treatment. There's a large percentage which I have failed to mention earlier of children with ASD who also have attention weaknesses, so symptoms similar to attention hyperactivity disorder. They might be on a medication to help with attention weaknesses.

Nada Youssef:   I see. Then Jane, "Could headbanging at 18 months be concerned behavior? Does it always mean the child has autism?"

Cynthia Johnson:  That's a great question. At 18 months child headbanging doesn't always mean they are at risk, or they may have autism, but it's certainly a concern particularly for a child who's doing any damage. Babies early on do some mild headbanging when they're put down for sleep, or in a crib, but if it's persistent, there's other developmental areas of concern, and or if the child is doing any damage, it's worthwhile seeking referral to see a specialist.

Nada Youssef:   Sure. All right, Amy, "Once you have the diagnosis, do you have it for life? And can the diagnosis change as you get older?"

Cynthia Johnson:  That's a super question, and I get asked this a lot by families 'cause the risk of having a label put on your child ... the choice, as I tell families ... the diagnosis there is to get the child the help they need. If it's not needed anymore, you don't need to disclose that. But it is a developmental diagnosis, so it's based on early development, and you can't change your early development. But how that is shared, the parent is still in charge of how ... who they share that information with. It's not a disorder that we think of as being cured, or going away. But again, if an individual doesn't need any supports, then they don't need to disclose the earlier diagnosis.

Nada Youssef:   Great. Then Lauren, "There is a child with autism who lives in the neighborhood, what is the appropriate way to approach a child with autism especially with other children?"

Cynthia Johnson:  Yes, great question. I think the way to approach is let the child approach you in their comfort zone, and just to give that child space, and get to know that child so it's clear what his likes and dislikes are.

Nada Youssef:   Robert, "At what age do symptoms of autism begin? Is it always when the child is small? Is it ever diagnosed after they've started school, or even later?"

Cynthia Johnson:  Great question. As we started out this morning, we like to diagnose this early as possible, but there are certainly children who ... so we can diagnose in the first year of life, but there are children who have mild presentation, and their social differences do not become evident until they are put in a social setting like school, and the demands of social are higher. It is the case that sometimes we diagnose in later school age years and even later, and with increased awareness we are seeing more and more adults who present and are questioning whether they have ASD.

Nada Youssef:   Sure, all right. I just have few more questions for you. I have a follow-up question from Lawie, "My nephew is deficient in social interaction, how can it be improved? Thanks for the answer."

Cynthia Johnson:  Many programs around have programs that do social skills training, a combination of some structured programs that focus on social skills as well as just being able to forge you nephew with opportunities that he will find interesting, tapping into his interest but are social in nature. I think we also have to be respectful of individual's social tolerance, so not overwhelming him and taking small steps.

Nada Youssef:   Sure. Then Trisha is asking, "Can you share more about the solutions for kids who are nonverbal?"

Cynthia Johnson:  Who are nonverbal, yeah so we are working very hard to figure out how to be more helpful to children who are nonverbal, or inimically verbal. There's some new interventions that have come out primarily out of UCLA where the focus is not just increasing verbal communication, but at least functional communication. This is also where technology comes into play with the advent of iPads, and specialized software so individuals can be more successful at communicating.

Nada Youssef:   Great. Well, thank you for your time. Is there anything else that you want to leave our viewers or listeners with?

Cynthia Johnson:  I can't think of anything that-

Nada Youssef:   Okay, great. Yeah we hit it all.

Cynthia Johnson:  ... comes to mind.

Nada Youssef:   All right. Well, and if you are interested in scheduling and individual consultation or assessment, please call 216-448-6440 and for more health tips and information from Cleveland Clinic, make sure to follow us on Facebook, Twitter, Instagram, and Snapchat at Clevelandclinic ... just one word, and we'll see you again next time. Thank you.