Transcription:
All About Autism

Dr Greg Fritz: So, the latest statistics are that about one in 44 children are diagnosed with autism spectrum disorder, and that means that hundreds of thousands of families in the United States are affected by this diagnosis. When a child is first diagnosed with autism, parents are sometimes stunned, others panic. It's normal, of course, to feel a range of emotions when receiving a diagnosis like this. Oftentimes there's a mad dash to find the appropriate services, which include schooling, doctors, social workers and others. There was a time when an autism diagnosis meant that the child would no longer participate in family life, couldn't go to school, and just would've not be able to do the normal everyday activities. That couldn't be further from the truth today.

Bradley Hospital is home to a full spectrum of programs and levels of care, ranging from residential to inpatient to partial and outpatient therapy for children with autism. Every day, our staff at our center are involved in treating children and studying different treatments and outcomes to inform evidence-based care.

Today, we have one of our psychologists with us to discuss autism. We want to say welcome to Dr. Kristin Knapp-Ines, clinical psychologist specializing in autism. Welcome to the podcast.

Dr. Kristin Knapp-Ines: It's great to be here. Nice to see you both.

Dr Anne Walters: Good to see you too.

Dr Greg Fritz: This is Mindcast: Healthy Mind, Healthy Child, a podcast from the mental health experts at Bradley Hospital, leaders in mental healthcare for children. I'm Dr. Greg Fritz here with my colleague, Dr. Anne Walters.

Dr Anne Walters: Thank you for being here, Kristin. Can you tell us a little bit about you and your background?

Dr. Kristin Knapp-Ines: Sure. I'm a clinical psychologist and a board-certified behavioral analyst, and I've been specializing in children and teens with developmental disabilities and autism.

Dr Greg Fritz: So, let's start from the top. I know the American Academy of Pediatrics has some standards for early identification. But can you help us, especially our listeners, be able to understand what those are?

Dr. Kristin Knapp-Ines: So, the American Academy of Pediatrics recommends basically a Child Find effort and recommends that general developmental screening takes place at nine, 18 and 30 months. But they also, in addition, want screening for autism for all children at age 18 months and then 24 or 30 months and using a standardized ASD or autism-specific tool. And the goal is to look for some clinical clues or red flags, meaning basically, is there a behavior there that shouldn't be there? Or is there an absence of a behavior that should be there?

And one of the screening tools, for example, is the M-CHAT for toddlers, that's the Modified Checklist for Autism, and that's a two-stage screening parent report tool. And basically, if the parent notes and screens or checks off the list and reaches a certain limit in regards to the number of items noted, a followup interview with a provider will then be done just to clarify further. And there are also other tools like the Infant Toddler Checklist. These are all level one screeners that you can get online at no cost. And I just want to mention that these screeners do not diagnose autism. They just basically identify, yes, the child may have autism or, no, unlikely to have autism.

Dr Anne Walters: And so, what are some of the characteristics related to this that make parents sometimes suspect autism spectrum in their own child?

Dr. Kristin Knapp-Ines: So at a very early age, often it's not even the autism-specific characteristics like, for example, the socialization or communication deficits or the restricted behaviors that caregivers start noticing. It's often sort of the daily struggle when the child has a meltdown just because maybe the blocks are changed the way how they left it the night before, and they come back and they see that they're out of order. Or maybe the food, peas and the chicken nuggets touch each other on their plate. Maybe the parents change slightly the words order of their favorite goodnight story. It might just simply that they have to wear clothes, or maybe they insist on splashing water in the sink for hours on end. Or maybe they have trouble getting into the bathtub, but then they're finally in the bathtub, then they don't want to come out. So, it's the daily challenges that can be immense and have a family maybe go from one meltdown to the next.

But over time, more specific autism characteristics come out and caregivers or teachers start noticing that the child maybe only uses a few, or maybe even no words. Maybe they had a large vocabulary, but they started to regress and maybe seemingly have lost their words. Possibly, there's echolalia, that's when the child is repeating words over and over. Something like delayed echolalia, that is when the child recites entire storylines or maybe the credit of a movie at the end. They start citing it seemingly out of nowhere, maybe while they're having dinner. And then, the parents start also noticing kind of the limited social reciprocity, which is the back and forth you have with a child when they maybe try to play peekaboo.

Then, other characteristics are using limited gestures, like if you try to engage a child playing along with the song Heads, Shoulders, Knees and Toes, and they just don't follow along. Or when the child sort of raises their arms and makes a big circle indicating this is how big the sun is, but the child just never uses these type of gestures. Then, other red flags might be that the child uses their parent's hand, using it instead of like a social contact, they would use it more as a tool to help them open the refrigerator. Or they don't respond to their name. They might move their body in an unusual way or often also over or underreact to certain sounds or lights.

Dr Greg Fritz: So, those kinds of things might be identified by the pediatrician and raise the pediatrician's level of concern enough to make a referral to a mental health professional, right? And then, when that happens, no doubt it's somewhat anxiety-provoking for the parents. But what should they expect and what's the procedure then when the referral is made?

Dr. Kristin Knapp-Ines: So, yeah, certainly that's understandable, that the families might be concerned about this next step. And I really hope that families are able to work with practitioners who are on one hand highly skilled, but then also on the other hand, understand what this means for the family to take these first steps.

And regarding the assessment procedure or the process, usually it starts off with a detailed clinical interview with the caregivers to get as much information about the child's development as possible. Then, I also gather information about the child's experiences at daycare or preschool or school, and what supports and interventions have they already received. And also, collecting data on kind of the pre- and postnatal information. And then, of course, detailed family and social history. And then, I also conduct an extensive record review and a direct observation, so I can get a feel for what the interactions look like between the caregiver or other people present and the child.

The second phase includes then the actual assessment, and that uses standardized evidence-based and autism-specific measures, but also to make it really a comprehensive approach using cognitive, language, motor, adaptive and socio-emotional skills measures as well. So if possible, also getting the input from various sources, such as if there is a school or a daycare provider or some other person who knows the child well besides the caregivers, that can be helpful. Now, in regards to the specific autism measures, for example, the ADOS, the Autism Diagnostic Observation Schedule, which is considered the gold standard. And then also, the CARS, which is the Child Autism Rating Scale, is typically used.

And then, finally, the third phase is the feedback session where all the information is laid out. The family can then expect to get an objective, hopefully, description of their child's abilities and challenges. Hopefully, they are able to walk away having an accurate diagnosis and then also know about the appropriate interventions.

Another thing is I feel the family can expect to be informed about programs their child might be eligible for, and then what resources are there online and then in the community. Then, another important piece that I also focus on is providing the families with knowledge, how to really be an effective advocate for the child.

Dr Anne Walters: So Kristin, it sounds like it's a pretty lengthy and comprehensive process that you go through with families. I'm imagining it would also be interesting for us to hear a little bit about causes of autism. Is it genetic, for example?

Dr. Kristin Knapp-Ines: No single cause there. So, the reality is that although research really has come a long way from the time that autism was considered to be created or caused by the refrigerator mother who rejects her child; therefore, the child turns inward until where we are today. So, we know so much more now. But the reality is that there's still a lot more that we don't know. Autism is very broad, that's why we call it a spectrum. And it ranges from very low functioning to very high functioning. And then, about one-third of the autism population has also an intellectual disability. Now, research tells us that it is genetics for a large degree. And there are a hundred plus or even more genes that contribute to the presentation of autism. And we also know that it occurs more frequently in genetic conditions such as fragile X syndrome, for example.

So, the other thing is there can be autism that can be passed down from one generation to the next in families. But then, there also could be spontaneous or the so-called de novo mutations where autism just happens in a family without anything traceable back to other generations. And these are the presentation that then basically turn on the light switch for a certain combination of these vulnerable genes and then, basically, autism develops. So, that means two people can have the same gene mutation and one of them develops autism, the other doesn't.

So besides the different gene presentations, there are other factors that also play into it, such as the rest of the person's genetic background. And then, some environmental exposures could influence if these genes are turned on or off. In regards to the environmental factors, it could be the age of the parents. There's been repeatedly studies that talk about the age of the mother, but then there's also some studies who talk about the age of the father, so if it's older parents. But also, the in utero exposure to viruses and infections, and then also complications during pregnancy or premature birth. But really, there's still a lot that we need to learn.

Dr Greg Fritz: Which is why we have so much research going on and why it's making such progress, we're happy to report. But the other thing that's been discussed a lot that people may have questions about is the idea of an autism epidemic that's being tossed about. So, could you say something about how common autism is and how that's been changing over the years?

Dr. Kristin Knapp-Ines: So, I do remember really well sitting in a psych class and my professor was talking about autism rate of one in 10,000. Now, clearly, I admit that it's been quite a long time ago, and things have changed drastically as we observe the numbers go up steadily with a worldwide rate of about one in 100. And then in the US, as you mentioned earlier, Dr. Fritz, one in 44 here in the US. Here in Rhode Island in 2001, 407 kids were diagnosed with autism. And then in 2019, so almost 20 years later, we're talking about roughly 2,600 kids, and that's according to Jessica Vega. She's a senior policy analyst at Rhode Island KIDS COUNT and she just gave me the numbers yesterday.

Dr Greg Fritz: That's with no change in the population of the state, so it's a constant population, but the different rates of autism diagnosis. That's amazing. I think that's very interesting.

Dr. Kristin Knapp-Ines: Yeah, it's interesting, these numbers clearly. So overall, we attribute the increase largely to a much greater awareness, because I do remember 30 years ago, only the most severely affected people on the spectrum receive the diagnosis. I've worked at an autistic ward at a large state hospital, which by the way The Eagles wrote a song about it, Hotel California. It was Camarillo State Hospital. And in that autistic ward or on that autistic ward were about 60 patients. They had very low IQ. None of them were toilet trained, no language, severe self-injurious behavior. Most of them had to wear straight jacket or big helmets, gloves to prevent severe harm. So luckily, these days are long gone. And now, we don't only have much better awareness, but clearly better diagnostic tools and a broader definition of autism for folks to get the necessary help.

Dr Anne Walters: Really huge changes in that area, even over that time span here at Bradley Hospital as well. Could you talk a little bit for us and our listeners about different treatment options?

Dr. Kristin Knapp-Ines: Most people understand by now, I think, that early intervention is really the key to addressing skills, particularly language, motor, adaptive, and social challenges. However, it's never too late. So even if the diagnosis, as we see almost on a daily basis, diagnosis being done later in maybe the teen years or even in adult years. So even if that diagnosis has been given later, there's a lot that can be done in regards to interventions and treatment. But if we go back to the early age, then the early intensive behavioral treatment interventions is an intensive treatment form based on applied behavioral analysis, and it teaches the young child really very important building blocks that are essential for being successful then in pre-K, kindergarten and school and, of course, beyond.

Then, there are other treatment options such as like the naturalistic developmental behavioral interventions. There are models like the Early Start Denver Model or Pivotal Response Trainings that focus very much on play and social skill development. Then, we have, of course, our social skills training and other relationship-based models in addition to very often necessary occupational or speech therapy and then also physical therapy.

I really also often feel like to have a comprehensive approach, it's necessary for the families to learn strategies to address various behavior challenges, just like the family would learn how to deal with the child's diabetes symptoms and knowing exactly what to do when the insulin level goes way up or goes way down. And as the child gets older, more and more co-occurring symptoms can play into it, such as anxiety, depression, obsessive-compulsive behaviors, or any other mental health issues, and that often can be addressed effectively with cognitive behavior therapy.

And then last, but definitely not least, medication can be considered for certain characteristics, although I do want to mention that there are no medications that address the core characteristics of autism, but they can definitely address difficulties focusing behavior challenges, mainly also self-injurious behaviors that can be truly harmful and then, of course, mental health issues like anxiety, depression, and then other medical conditions that often are connected with autism like seizures, gastrointestinal problems, or sleep difficulties.

Dr Anne Walters: So Kristin, as a clinician that works daily with children and family, with children on the autism spectrum and their families. Is there anything that we haven't asked you about that you think is important for families to know in terms of your philosophy of care?

Dr. Kristin Knapp-Ines: Yes, definitely. Thanks for asking that. I really would like to mention the importance of recognizing the diversity autism brings to our society. Because for too long, folks on the spectrum had to try so hard to fit into the neurotypical framework. And I think we are now at a point where we absolutely have to expand this framework to make our society much more inclusive for people with autism. And really, just because someone doesn't want to socialize as much or approaches things differently, that doesn't mean they can't be included. So, I think it's really important to think where we can make adjustments in our society and also in the educational system, so that people who think differently are no longer excluded.

Whoever listens to the podcast, if you have time to watch Simon Baron-Cohen's talk about self-determination. He's a professor at the University of Cambridge in England and listen to his talk at the United Nations Conference about human rights and disability in 2017. It's on YouTube. You find some very inspiring words there.

I mean, luckily, we have some promising developments over the years like Sesame Street included the character with autism, Julia. Then, there are TV shows, streaming shows with stories about people with autism. Maybe check out one of the recent one, like Extraordinary Attorney Woo, it's quite interesting. Then, the PBS show Xavier Riddle and the Secret Museum that was praised by Temple Grandin. And then also, companies like SAP and Microsoft and Auticon are hiring more and more folks on the spectrum, but there are still a lot that needs to be done. So, we are really just at the beginning.

I don't know if anybody is interested in some resources, but the toolkits from Autism Speaks are very helpful. By now, I think they have like 20 or 25 different toolkits, and they address everything from like how to take my child to have blood drawn, including visual social stories to challenging behaviors to transition toolkits. So, there's a lot that you can find.

Then, there's the Parents Guide to Autism and Evidence-Based Practice from the National Autism Center at the May Institute in Massachusetts. And then, the Autism Navigator has also really helpful resources and videos developed under Amy Wetherby at Florida State University. And then, of course, our local resources here at Bradley Hospital, and then also the Autism Project in Rhode Island.

Dr Anne Walters: Kristin, thank you so much for such a comprehensive discussion of autism spectrum today. And we could clearly talk for hours about this, and there's still so much to cover. You'll have to come back and join us another time.

Dr. Kristin Knapp-Ines: Thank you for inviting me. I appreciate it.

Dr Anne Walters: Thanks so much for being here with us. And if you found the podcast helpful, please share it on your social channels and check out our entire podcast library at bradleyhospital.org/podcast.

This is Mindcast: Healthy Mind, Healthy Child, a podcast from the experts at Bradley Hospital. I'm Dr. Anne Walters with Dr. Greg Fritz. Thanks for listening.