Transcription:
Autism Awareness

Melanie Cole (Host):  There’s no handbook for your child’s health. But we do have a podcast, featuring world class clinical and research physicians covering everything from your child’s allergies to zinc levels. This is Kids Health Cast by Weill Cornell Medicine. And out topic today is Autism Awareness. Joining me is Dr. Renae Beaumont. She’s an Assistant Professor of Psychology in Clinical Psychiatry at Weill Cornell Medicine and an Assistant Attending Psychologist at New York Presbyterian Weill Cornell Medical Center. Dr. Beaumont, it’s a pleasure to have you on with us today. What are the autism spectrum disorders? How common are they? Explain a little bit about them for us.

Renae Beaumont, PhD (Guest):  Yeah, so Melanie, autism spectrum disorders are neurological and developmental disorders that begin in early childhood and are considered to be lifelong. So, there isn’t a cure for autism at the moment. And autism affects a person’s interactions with other people and with their environment and how they can communicate and learn. So, with the kids that I often work with who are on the autism spectrum, they often have trouble detecting how other people feel from facial expression, voice tone, body posture clues and in some cases, they really struggle to recognize and understand their own emotions and manage those emotions effectively as well.

So, one of the big challenges that many kids with autism have is they struggle to kind of crack the code of social interactions. So, for most people, being able to talk and hang out with others kind of just comes second nature. It’s not something we really think about that much. But for a child who is on the autism spectrum, often they have to learn the steps for how to socialize and interact with others in an explicit sort of painstaking way, kind of like you are learning a second language. So, just like learning a second language, the earlier you start, the better. And it’s the same for kids on the spectrum. And the reason it’s called an autism spectrum disorder, it because different kids vary in terms of symptoms they present with.

So, one child may struggle with turn taking with conversation whereas another might struggle more with eye contact and the other key area where they are often a little challenges is in repetitive behaviors or interests. So, some kids on the spectrum tend to really have a very intense preoccupation or interest in a certain area that’s very factual. It might be the subway stops on certain line within New York City for example and that’s often kind of not what other kids around their age are into. So, the fact that different kids present with different symptoms and there can be a difference in severity of how much those symptoms impact on their daily life; that’s why it’s called an autism spectrum.

Host:  So, is it considered an epidemic? Do we know the cause at all? Tell us a little bit about the prevalence and any causes that we know.

Dr. Beaumont:  Yeah, absolutely. So, the current prevalence rates are considered about one in 59 according to the CDC. So, one in 59 children on the autism spectrum. In terms of whether it meets criteria for being an epidemic; there has been a notable increase in the prevalence of autism over the past 20 years. So, estimates were as low as say one in 10,000 back in the early 90s.

As to what are the causes, why are we seeing this increased prevalence? There seem to be many factors at play. So, first of all, we’re a lot more aware of autism now and we do a lot more screening than what was done in the past. Secondly, there is a genetic contribution, but genes don’t explain it all. It’s often an interaction between genetics and the environment. So, if you have a parent or a sibling who is on the spectrum; then there is an increased risk for the person may have it themselves. But there are other factors that also come into play. So, for example, research shows that advanced parental age is a risk factor. Pregnancy and birth complications like prematurity, low birth weight, multiple pregnancies. So, there are many factors in play and it’s not like there’s one simple gene that we like this is what causes autism. There seems to be this complex interplay between different genes and genes in the environment.

Host:  So, there is a genetic component, when we are speaking about risk factors.

Dr. Beaumont:  That’s right, yes.

Host:  Is there a screening? Tell us a little bit about when that happens and what’s involved in it.

Dr. Beaumont:  Yeah, absolutely. So, there isn’t like a blood test for autism. It’s not that simple. Screening typically involves a formalized questionnaire, question and answer process, with your child’s pediatrician at their 18 and 24 month well check visits. So, that usually how it plays out. Usually parents are involved in completing a brief questionnaire, answering some questions and if the pediatrician considers the child to be at risk of being on the autism spectrum; then they’ll be referred for a full comprehensive assessment. And that’s usually done by a team of professionals. So, there might be a speech and language pathologist, a psychologist, and occupational therapist to look at your child’s functioning in a range of different domains.

Also in terms of what the kind of gold standard tools are; these tend to be based on observing your child’s behavior and collecting a lot of information from teachers, at a daycare center or at school, from parents, other key people who spend a lot of time with your child and observing their behavior in different contexts.

Host:  So, I find this so interesting Dr. Beaumont. Tell us about the award winning Secret Agent Society, I love the name, the social emotional skills training program for youth and their families. Tell us how this is used by educators and mental health professionals in nine countries worldwide to improve children’s emotion, regulations, social skills. Tell us about the Secret Agent Society.

Dr. Beaumont:  Yeah, happy to tell you about it Melanie. So, it’s a video gaming based therapy program that I developed that teaches kids on the autism spectrum the skills they need to feel happier, calmer and braver and to make and keep friends. So, it was designed for eight to twelve year olds and there’s a number of published trials out there showing the effectiveness of the program in improving kids’ ability to manage their emotions better, socialize with others and those improvements are maintained and enhanced even one year after the kids finish the program.

The other great thing is the program includes resources for parents and professionals as well. So, they’re empowered and skilled in how to best support the child using this social emotional skills in daily life when they need them.

Host:  Isn’t that amazing? So, has it shown to be effective for kids with the autism spectrum disorders, anxiety and or ADHD?

Dr. Beaumont:  Yeah, I mean that’s what’s been really exciting. So, we have some early research findings from a trial that we’ve done at Weill Cornell showing heh, it’s not just kids on the autism spectrum that can benefit from this program. Kids who have ADHD, kids who have anxiety disorders and sometimes a blend of two of three of those different conditions show just as great an improvement in their ability to socially connect with other kids and make friends as well as to manage some of those difficult emotions like anxiety and anger. So, it’s really exciting, very promising findings.

Host:  It seems like it. It really is exciting. We know that every situation is different with a child on the spectrum. But how can a child be helped by this combined effort? We talked a little bit about it before of parents, and the healthcare community, the school district, the state. How does this happen? How do they all work together? Is this up to the parents? Who helps with this and the medical home?

Dr. Beaumont:  That’s a brilliant question Melanie. They say it takes a village to raise a child. And that’s particularly the case for a child who is on the autism spectrum. So, it can be really hard for parents in trying to navigate what professional services and supports do they need, when, how do we coordinate all those different service providers so that the family and the child don’t fell overwhelmed. So, i think a really important first step for parents is talk to your pediatrician and then kind of ask them what are some of the supports they think would be helpful for the child. Also reaching out to the local school board, local autism advocacy organizations to find out heh, what’s available and then talking to whoever is involved in that support team around the child about saying look, we want a coordinated approach. Let’s think about what are the primary goals and priorities for the child at this point in their development. How are we going to achieve them and how we all are going to work together to achieve that?

And that looks different based on the resources and the people involved in the support team. so, if there’s a social worker involved, they may take the lead in helping with the coordination with care. If there isn’t one involved, it may be is there another key member in that support team who is going to help keep everyone on the same page? So, that there is consistent effective strategies being implemented across different environments. At home, at school, in therapy sessions. That consistency across environments is so important so the child can actually learn to apply the skills they need in different situations when they are needed.

Host:  Such an important point and as we’re talking about the challenges that kids with autism face, tell us about the types of therapy that have proven helpful and what age do you start to identify and work through some of these issues?

Dr. Beaumont:  I think one of the key principles with effective therapeutic outcomes for kids on the autism spectrum is the earlier the better in terms of being able to get them help. So, if we look at the research outcomes, kids who get really early help as soon as the autism is detected, particularly intensive what we call behavioral intervention; so this is where either in a kind of small group environment or one on one, the child intensively learns the everyday living skills they need, the skills they need to communicate, to socialize, typically between 20 to 40 hours a week of therapeutic  intervention support to start developing these skills so they can play catch up relative to other kids the same age. And similar, it is very important as part of that early intervention framework that parents are upskilled in how they can help their child apply what they are learning in their small group educational situation or one on one therapy so the parents know heh, this is how I can use those skills to support my child’s ongoing development at home or when they are not in a formal therapeutic context.

So, the earlier the better is the key point. We can start therapy with kids at two or three if that’s when they are detected and identified as having significant number of symptoms to qualify for an autism spectrum disorder diagnosis. There are many types of therapies out there. And I think that’s one of the things that is so tough for families is they’re trying to navigate the speech therapy, there’s occupational therapy, there’s psychological therapy. How do I know what my child needs and when? And speaking with the pediatrician if the child is in an educational context asking for their input around what the child needs and then finding a way to bring those therapeutic support members together so that if the child for example, has issues with sensory sensitivities, maybe they are really sensitive to loud noises or sensitive to bright lights. Then the occupational therapist can work on that. If the child becomes super distressed by those experiences and has a meltdown, becomes screaming, crying then there may be a psychologist involved to help them learn how to manage their feelings better and how to be able to recognize emotions in others.

So, that might be their input. If the child really struggles to communicate their distress or what’s upsetting them; there may be a speech therapist involved. So, they can help the child express their needs more clearly to prevent that emotional outburst. So, that’s a kind of practical example of how all those different professionals can work together to help that child be able to engage better in daily life and not be so upset.

Host:  Such an interesting topic Dr. Beaumont and before we wrap up, tell us about family members, siblings, parents. How do they get involved in these types of therapies and please offer your best tips for families when facing this diagnosis and what you want them to know about bringing all those providers together.

Dr. Beaumont:  Yeah absolutely. I mean having a child on the autism spectrum has a profound impact on everyone within the family. I think one of the great things is when the child is able to express themselves more effectively, connect with others better and become more independent in their daily life; there’s a beautiful positive flow and effect on all members of the family. So, you can imagine if you’re the sibling of a child on the autism spectrum and your brother or sister isn’t getting so upset, isn’t taking your toys when they want them, learns how to take turns and share; that makes your life a lot less stressful at home.

Similarly for parents. Often parents really struggle to engage consistently in paid employment because they need to be there to support their child. So, if the child’s able to function better and more independent, able to manage their own emotions and daily stresses better; then the parent can engage in workplaces more effectively, other relationships, if it’s a two parent family, that couple relationship is a huge stress taken off them as well because the parents are consistent and know what strategies are going to work best in supporting their child.

So, it’s beautiful to see the positive impact that the therapy with the child on the autism spectrum when it’s successful and effective has on the broader family and then the broader community, if the child is at school or in a daycare for example. In terms of three main tips that I would give families. The first is if a parent has concerns about their child’s development, they often say a parent’s instinct, there is just a gut feeling something’s not right here. It’s important to seek help early. Don’t dismiss it. Don’t minimize it. Book an appointment to see your family pediatrician and express your concerns to see if there may be something that’s not quite developing as one might hope.

Secondly, if they’re looking for therapy services, devises or supports, it’s really important to ask providers heh what’s the evidence that this works. There are a lot of things out there. Families are overwhelmed with information about new diets, or new gadgets or this or that that may be able to help their child with autism and they often invest a lot of time, energy and money into things where the research just isn’t there to show that they work. So, that’s the second thing. Look to the evidence. What does the research say about how effective this is and for a child with a similar presentation to their child?

And thirdly, if they do have a child with autism, to realize that they are the most important and valuable member in that child’s support system and that child support team. So, they are going to be with their child as their child grows older. So asking therapists and educators who are working with their child heh what can I do to reinforce what you’re teaching my child at school, in session so that that learning continues in the home environment and they are really helping their child to reach their potential.

Host:  Great advice Dr. Beaumont. What a wonderful episode for parents to hear and to share with their friends and family members if they have a child on the autism spectrum disorder. Thank you for joining us today. And thank you to our listeners. This concludes today’s episode of Kids Health Cast. Please remember to subscribe, rate and review this podcast and all the other Weill Cornell Medicine podcasts. For more health tips and updates on the latest medical advancements and breakthroughs, please follow us on your social channels. I’m Melanie Cole.