Why it’s important to identify autism early

Transcript

Prakash Chandran: There are different opinions among doctors, parents, and experts about what causes autism and how to best treat it. There is one fact, however, that everyone agrees on, early identification and intervention helps. For children at risk and children who show early signs, it can make all the difference. We’re going to learn more about it today with Dr. Emily Lowell, a psychologist with Prisma Health.

This is Flourish, a podcast brought to you by Prisma Health. My name is Prakash Chandran. So Dr. Lowell, really great to have you here today. Let’s just start with a basic understanding of what autism is.

Dr. Emily Lowell: Yeah, thank you so much for having me. So autism is a neurodevelopmental disability, which means it occurs in the brain and it causes difficulties in two different areas. One is social skills and then the other is restricted or repetitive behaviors. Some examples of those social skills difficulties can be making friends, difficulty holding a conversation, difficulty understanding social cues. And some of those restricted and repetitive behaviors can be things like unusual interests, sensory difficulties, unusual speech patterns.

The research is really clear that we can identify symptoms of autism even in infancy. And autism is not an uncommon disorder. We really think that between one and 59 children in the United States will be diagnosed with autism.

Prakash Chandran: Yeah. So one of the things that you mentioned were symptoms. And as a parent, that’s what I think about, what are the signs and symptoms that I should be looking out for that might indicate that my child has autism? Is that something that you can speak to?

Dr. Emily Lowell: Yeah. So that’s another great question. Even young children, even babies are really quite social. So if you think about playing with a little baby, you might think about playing peek-a-boo or pat-a-cake. You might think of them smiling or giggling at you when your silly. Babies respond to their name when you call them and they show an interest in other children. So if your child is difficult to engage in play or doesn’t show an interest in other children, that could be a sign of autism and you might want to talk to your pediatrician about that concern.

Prakash Chandran: Okay, understood. And when you say babies, what age should we be looking for these signs or symptoms?

Dr. Emily Lowell: So even young babies should be sociable. When I say young, I’m really thinking of like a six-month-old baby, is pretty sociable, giggly, smiley, engaging. And the research is really quite clear that we can identify autism as young as 18 months. And so if you’re having concerns when your child is a baby, I would certainly suggest talking to your pediatrician.

Prakash Chandran: Absolutely. One thing before we move on to what to do if you notice that your child is exhibiting some of these is I wanted to understand maybe a little bit more about the signs, because you mentioned some of the social signs, but I’ve also heard about things like repetitive behaviors or language delays, and maybe those are some things that you can speak to that parents should be on the lookout for.

Dr. Emily Lowell: Yes. Children with autism sometimes have different restricted or repetitive behaviors. Sometimes this can be an unusual way of moving their body, like flapping their hands or moving their fingers in front of their face or walking on their tippy toes. For other children, it can be a really strong, unusual interest, so things that you might not think a kid that age would typically be interested in. And I’ll just give a few examples, but it could be anything.

Some children might be really interested in vacuum cleaners or in circuit boards or wheels or door hinges. And sometimes it’s something even more obscure, like a very young child who’s really interested in irrigation systems or in the periodic table. Those sorts of really unusual interests are somewhat common in children with autism.

As for the language delays, we usually expect that by 12 months of age, children can babble with long strings of sounds, so like ba-ba-ba-ba or ma-ma-ma-ma, and that they’re saying one or two words. So some of the most common first words are hi, bye, dada, Uh-oh. And then by two, we’re typically expecting that kids can put two words together, like “What’s that?” or “No bed.” And by three, usually children can put at least three words together and they have a word for almost everything that they need. And then by four, most children can use about four sentences in a time and ask questions. So if your child is not meeting some of those milestones, that would be another good indication that it’s time to have a conversation with your pediatrician.

Prakash Chandran: Yeah, I was just going to ask you about that. So, you know, if my child is exhibiting some of the symptoms that you’re talking about or I’m concerned that my child may have autism or autism spectrum disorder, what should I do?

Dr. Emily Lowell: The very most important thing is don’t wait. I think that a lot of parents first inclination is, “Well, let’s just wait and see. Let’s just give them some time to develop.” And what we know is that early intervention is critical. So the sooner we can identify those young children and provide the right therapies and the right services, the better those long-term outcomes will be.

So a great first step is to talk to your pediatrician because they should be well-versed in those developmental milestones and can help determine the best next steps. But also if your child has not yet reached their third birthday, so any time before their third birthday, you can actually self-refer to something called BabyNet. And BabyNet is our state’s early intervention agency. It serves children from birth until their third birthday. And parents can call and just say, “Hey, I have some concerns about my child’s development.” And BabyNet will do a little screening and determine if that child qualifies for any services. So you can go online and check out the BabyNet website, or you can call them at 1-866-512-8881.

Prakash Chandran: Okay. That’s really good to know. So you’re saying that if a baby is under the age of three, then the parent can go ahead and self-report on BabyNet, right?

Dr. Emily Lowell: Correct.

Prakash Chandran: What happens if they are over the age of three?

Dr. Emily Lowell: So, if you have already reached your third birthday, then your child is eligible for services through their public school district. So whatever school district your child would attend for kindergarten, you can call the district office for that district and tell them that, “Hey, I have a preschool-aged child, a three-year-old or a four-year-old. And I’m concerned about their development. And I would like to request an evaluation for services.” And most children with disabilities including autism are eligible to start public school on their third birthdays. So that surprises a lot of people, because I think we’re used to thinking about kids starting school in kindergarten when they’re five or six. But children with disabilities can start younger and it’s not something that’s income-dependent and it’s also not something where they can cap it and say, “We only take this many children.” If your child has a disability and they need services, then they should qualify.

I also wanted to point out that this is true even if your child is not yet toilet trained. I think a lot of us have experience of taking our children to private daycares. And if they’re not toilet trained at age three or four, the private daycares will say, “Sorry, you know, we can’t take a four-year-old who’s not toilet trained.” The public schools can’t say that if your child has a disability, so they would still be eligible for that service.

Prakash Chandran: Okay. That is good to know. So let’s move on to how a child is officially diagnosed for autism. We talked about some of the symptoms that parents might recognize, but how does official diagnosis actually happen.

Dr. Emily Lowell: So when a pediatrician agrees with the family,” Yeah, we have some concerns about autism,” the pediatrician is typically going to refer to a psychologist or a developmental pediatrician. So there’s no brain scan. There’s no blood test. There’s no kind of definitive marker for autism. And so what happens is you’ll meet with the psychologist or the developmental pediatrician, and they’ll start off with a really detailed parent interview and just ask you what your concerns and questions are, what signs or symptoms you might’ve noticed as well as taking you through some structured questions about autism specifically.

And then they’re probably going to ask you as the parent to complete some forms and some rating scales that give them more information. And then honestly, they’re just going to want to play with your child. So typically, the children really enjoy these appointments. For the younger children, we have bubbles and rockets and toys. And the idea is for us just to get a sense of what your child’s social skills look like, and also to see if we can notice any of those unusual or repetitive behaviors.

Prakash Chandran: Okay. Can you speak to those a little bit? So for example, what exactly are they looking for? Do they run certain exercises, speech exercises, visual exercises? Maybe talk about that a bit.

Dr. Emily Lowell: When we do the different activities with the kids, we’re really trying to most of all, get an idea of how they do socially. So, often young children with autism have difficulty with what we call a requesting skill, which is asking for something, so like “I’m hungry. Can I have a cookie?” And that’s a really difficult skill for a child with autism. So we actually have a snack time with the child where we put a favorite snack in a plastic container that the child can’t open. And then we just kind of pause and wait and see how does that child ask to have that snack. Do they hand it to you? Did they use words and say, “More, please”? Do they just try to get it themselves? Do they get upset? What does that look like? So it’s just some kind of natural different play activities that we use to understand kind of how a child’s social skills or communication skills have been developing.

Prakash Chandran: And is there any sort of rubric or measurement that might tell a doctor “Hey, this child has not passed three of the five tests. Therefore, they have autism”? And then, furthermore, how do they identify where on the spectrum they are?

Dr. Emily Lowell: There’s not necessarily a rubric. There are many different measures for autism, which is kind of complicated. And this is why you want to go to a psychologist or a developmental pediatrician that specializes in autism, because it’s not something that most doctors are trained to do. But when we think about it, we use the criteria called the DSM Criteria, the Diagnostic Statistical Manual. And it literally gives us a checklist of all the different symptoms of autism. And you have to have enough checks on that checklist in order to meet criteria for autism. And so the psychologist or the developmental pediatrician would try to collect information from a variety of different sources so that they can accurately fill out that checklist.

In terms of where a child is on the spectrum, that’s probably the question that I get asked the most from parents who have a child with a new autism diagnosis, and it’s also the most complicated question to answer because autism, I think a lot of us like to think of it as occurring on a continuum or like a number line, and that’s not really how autism works. So autism can impact a lot of different areas of development, social skills, language skills, cognitive skills, fine motor skills, a whole bunch of different areas. And so it’s more multidimensional than just being like, “Okay, are you high or low?” And because of that, it’s kind of hard to sum up in one term where that child “is”.

Prakash Chandran: Okay. Definitely. That’s very helpful to understand. And I know that you might not have the exact answer here, but what do we know about what causes autism?

Dr. Emily Lowell: The literature doesn’t have a good answer to that question overall. What we do know is that there’s a genetic component to autism. And I think a lot of times when I say this to parents, they’re like, “But I don’t have autism” and, you know, “The child’s dad doesn’t have autism.” And it’s not necessarily something that’s been inherited from the parent. Sometimes it is. But other times, it’s something that is just encoded in the child’s genes. So when those chromosomes come together, if a little tiny piece of DNA gets duplicated or gets deleted, sometimes those types of mutations can cause autism symptoms. And the field of genetics and autism is really rapidly developing. And so we’re learning a lot more about causes of autism. But we do overall know that there’s usually a genetic component.

One other thing I think is really important to mention now is that we know that vaccines do not cause autism. So the original study that found the connection between vaccines and autism has been recalled, because it was found that that researcher had falsified all of his data. And since that time, they’ve tried to find a link between autism and vaccines, and they’ve done tons and tons and tons of studies and have never been able to demonstrate a link between vaccines and autism. So, this is a plug to get your children their normal vaccinations, and you don’t have to be frightened that that might be a cause of autism.

Prakash Chandran: I was just going to ask you about that component of it, because I had heard that it had been disproven, but it’s amazing how long false information can persist for. So I’m really glad that you cleared that up.

Dr. Emily Lowell: Yes, absolutely. I appreciate the opportunity to dispel that myth at any turn. And then finally, one last thing I wanted to say about causes of autism is that we know it’s nothing that the mother or the father did or did not do. I think a lot of times, parents, especially moms, carry a lot of guilt of, “Oh, it must’ve been something I did during pregnancy” or “It must’ve been something I did when they were a baby” or, you know, “I’ve done this thing wrong.” And really the research doesn’t show anything that mothers or fathers have done or not done that would have caused autism in their child.

Prakash Chandran: Understood. And one thing I’d like to just address broadly is if a child has autism, I think one thought for a parent is what type of life is my child going to have? Are they going to live a fulfilled and enriched life because of this condition? Is this something that you can speak to?

Dr. Emily Lowell: Absolutely. I’m so glad you asked that question. And I understand that I come from a point of privilege in answering this in that I don’t have a child with autism. But as a professional who works with children with autism all day, I love kids with autism. I think that the neurodiversity that they bring and the value that they bring to our world and to the community and the way that they see things and understand the world around them is really quite beautiful. And so absolutely, individuals with autism can live a wonderfully fulfilling life.

Also many individuals with autism grow up to be fully functional, independent adults. They get married, they graduate from high school and college. They have children, they buy houses, they run Fortune 500 Companies. So really having a diagnosis of autism doesn’t take anything off the table for that individual. It just helps us understand what kind of services and supports that child may need to flourish.

Prakash Chandran: Yeah, absolutely. I think that is so important for parents to understand that their child can live a very fulfilling and enriched life. At the outset of this episode, we talked about the importance of intervening early and some early treatment options. So I’d like to get into those options or therapies. What therapies are available for a child that is diagnosed early with autism and what do those therapies do?

Dr. Emily Lowell: So, really which therapies are recommended is highly variable from child to child because each child is unique and has their own sets of difficulties and strengths. So you’re going to want to work with the psychologist and the developmental pediatrician to help make the best individualized plan for your child. But more broadly, many children with autism benefit from speech, from occupational therapy, from having an early interventionists, which is what BabyNet provides. So BabyNet will send someone out to your home or to your child’s school one day a week to work with you, to work with the child, to work with the child’s teacher. So that’s a really valuable resource and that is totally free of charge.

Many children with autism also benefit from a specific therapy called applied behavioral analysis or ABA therapy. That’s a very intensive therapy that’s specifically designed for kids with autism and it really works to increase positive functional behaviors like using the bathroom appropriately, eating a wide variety of foods, getting yourself dressed, interacting appropriately with others, as well as to pull down any of those difficult behaviors like hitting or kicking or biting, tantrums, those sorts of things.

Prakash Chandran: Okay. Got it. So, just as we start to come to a close here, you’ve obviously seen a lot of different cases in children with autism, and there’s going to be parents that might be concerned that are listening to this, they might be worried about their child. After everything that you’ve seen, after all of the patients and children that you’ve seen, if you had one piece of advice or one thing that you could share with the parents that are listening to this, what might that be?

Dr. Emily Lowell: I think if I could give parents one take-home message, it would be an old adage that goes, “If you’ve met one child with autism, you’ve met one child with autism.” And that really resonates with me because no two children or no two adults with autism are alike. There’s just such diversity and such value across all individuals with autism. And that parents still has the same child that they walked into my office with, the same wonderful child with the same wonderful qualities, and having autism doesn’t change that.

Prakash Chandran: Well, Dr. Lowell, I think that is a fantastic place to end. Thank you so much for your time.

Dr. Emily Lowell: Yes. Thank you so much for having me.

Prakash Chandran: That’s Dr. Emily Lowell, a psychologist with Prisma Health. If you have concerns that your child might have autism, you can go ahead and search the web for BabyNet or you can call 866-512-8881. For more general information, you can visit our website at PrismaHealth.org. And to listen to other podcasts just like this one, you can head on over to PrismaHealth.org/Flourish.

This has been Flourish, a podcast brought to you by Prisma Health. My name is Prakash Chandran. Thank you so much, and we’ll talk next time.