The CDC estimates that one in 150 8-year-olds in the U.S. has an autism spectrum disorder. Are the numbers on the rise, or is the definition of autism expanding. What, if anything does it mean for parents as they look at their children and wonder about behavior and development?
Tressa Dykstra is a nurse practitioner at Sanford Children's Hospital. This conversation has been edited for web use, to listen to it in its entirety click here.
Lori Walsh:
Welcome back to In the Moment. I'm Lori Walsh. The CDC estimates that one in 150 eight-year-olds in the U.S. has an autism spectrum disorder. Are the numbers on the rise, or is the definition of autism expanding? What, if anything, does it mean for parents as they look at their children and wonder about behavior and development? Tressa Dykstra is a nurse practitioner at Sanford Children's Hospital, and she joins me now in the studios at the University of Sioux Falls. Tressa, welcome. Thanks for being here.
Tressa Dykstra:
Thank you for having me.
Lori Walsh:
Tell me a little bit about your role as a nurse practitioner and how you sort of bump up against this autism spectrum disorder in all its incarnations.
Tressa Dykstra:
I've been a pediatric nurse practitioner and pediatric mental healthcare specialist for eight years at Sanford Children's. In addition to that, I'm a mom to five children, including two with autism. I work in the Autism Clinic at Sanford as well.
Lori Walsh:
The bottom line that people are always asking, it seems like we're asking it every year, are the numbers going up, or is it the awareness and expansion of the definition of autism or autism spectrum disorder that's changing? How do you look at that professionally?
Tressa Dykstra:
It's actually a combination of both. We are getting better at detecting. There's increased awareness, and so more people know the symptoms to look for. Girls, for instance, we were missing girls before. There's also some racial disparities, so we're getting better at picking up minority children, children who are black or Hispanic. However, there's also a true increase in the number of cases of autism.
Lori Walsh:
Right, and do we know why?
Tressa Dykstra:
We don't know why. Our best explanation is that it's a combination of being genetically susceptible, so having some kind of blueprint in your body that makes you more susceptible to things in the environment. For example, parental age at the time of conception, possibly things that are in our everyday use, traumatic deliveries, oxygen deprivation, maternal medications, drug, alcohol use, etc.
Lori Walsh:
As a parent of kids, how do you process this as a parent? Because some of your kids do not have autism, and two do, did you say? Do you look back at that and say, "Oh, I can ... " Does it feel random to you, or does it feel genetic to you? Does it feel environmental to you? How do you process it as a mom?
Tressa Dykstra:
I process it as, as the data shows, really a combination. My children with autism were adopted, so there was a different genetic background as well as some early stress and trauma as a result of their adoption, so I think in our case it was an example of probably both of those factors playing in.
Lori Walsh:
You mentioned missing girls, and so let's talk about symptoms. As parents look at, what are the symptoms they should be concerned about?
Tressa Dykstra:
The definition of autism is a discrepancy between your general functioning, so your intellectual ability, how well you handle yourself and problem-solve. That's at the top level, that's our defining feature. Then there's a gap between that and social communication ability. For example, a child who is five years old and can problem-solve at that level, yet communicates at a much lower level, perhaps not interested in showing things, telling people or engaging with their friends, may have autism. The other core feature of autism is a discrepancy in restricted and repetitive behaviors, so using the example, again, of a five-year-old, we would expect their play to be diverse. They might like dinosaurs, but they may be able to play a variety of toys. A child with autism, perhaps, only wants to talk about dinosaurs. They only want to play with dinosaurs. They may want to line them up and say the same thing over and over again.
Lori Walsh:
How do you know when it is something that you need to talk with your physician about?
Tressa Dykstra:
Parental concern is the number one indicator for a child having a developmental problem, so really, for parents trusting their gut, and if they feel something is off, that's the time to talk to your pediatrician.
Lori Walsh:
Right, but if you're a new mom, new dad, you maybe don't have anything to hold it up against and say this, and maybe you've got plenty of people are giving you advice on what your child should be doing, you're trying to trust your instincts. How do you know ... There's no specific. How young does it start showing up?
Tressa Dykstra:
Symptoms of autism can be present from a very young age. Some parents will say when they look back they could even see signs when a child was an infant. Autism can be reliably diagnosed at age two. The CDC's recent report said we're still missing the mark, and the average age of diagnosis is four. Again, that report really says it's parental intuition, so trusting your gut, even though people around you may be saying, "My child did this," or, "Don't worry." It really is important to trust your gut and reach out to your primary care provider, your school district.
Lori Walsh:
Then what happens? What kind of screening is there for a two-year-old to sort of figure out whether this kid is someone that we need to sort of watch, and then we'll talk about early intervention?
Tressa Dykstra:
You're exactly right. A screening tool is important so that the provider is not making just an objective assessment in the office, but rather using something like an M-CHAT or some other type of questionnaire that looks at symptoms both in the home and a secondary environment.
Lori Walsh:
How long? I bring my child in, the doctor asks me a bunch of questions, and I'm like, "I don't know. I hadn't thought about that." Then do you sort of track behavior for a certain period of time?
Tressa Dykstra:
Depending on what the child is presenting with. If the child is presenting with a speech delay, whether or not it's part of an autism diagnosis, they need speech therapy. If a child is presenting with a lot of refusal behaviors or sensory processing, problems they need occupational therapy regardless of whether or not they have an autism diagnosis, and then over time, if the symptoms persist, they would move towards an autism evaluation, but hopefully the process is not drawn out.
Lori Walsh:
How important is early intervention? What do we know?
Tressa Dykstra:
We know it's extraordinarily important, and that's why we'd like to see the diagnosis of autism happening earlier, more children routinely screened, because we know that that investment in a child's development pays off. Children with early intervention are more likely to be independent adults, more functional, more social and communicative.
Lori Walsh:
Some parents would most likely worry, would maybe put this off because they don't want that word to be attached to their child. Is that, is it a permanent label? Is it a permanent diagnosis? Is, somehow you could have your child, and they could say there are some concerns here, and the child could be worked with, and those concerns could go away? Is that not, is that a false diagnosis, then?
Tressa Dykstra:
No, autism is a lifelong disability, but severity, we hope, decreases over time if we're able to provide the right kind of support. Again, reaching out towards therapy, medicine, all those different areas, education, and giving a child will hopefully, over time, make those symptoms of autism almost indistinguishable to people who don't know the core symptoms of autism.
Lori Walsh:
Are there things that need to be done the rest of your life, then, though? Does it have to be maintained forever?
Tressa Dykstra:
It's so individual. The spectrum is so wide and so variable that that's hard to say. One-third of individuals with autism have an accompanying intellectual impairment or a cognitive impairment, so most likely if you have autism and a cognitive impairment, I would suspect you would need services as an adult. However, if your IQ is normal and you have normal kind of horsepower behind your thinking and learning, there is a good prognosis.
Lori Walsh:
Let's talk a little bit about the economic consequences, not only for individuals with autism who might struggle in the workforce, but for families, because you're mentioning a lot of interventions, and the price tag just sort of starts-is it expensive and prohibitive, or what are we doing in Sioux Falls or in the region to sort of help parents get the treatment for their kids that they need without the cost being the only thing they can afford to pay for?
Tressa Dykstra:
It's a real problem, and I think we need government support to invest in programs for all children, because right now, depending on your insurance and your financial ability, that does dictate how many services you're able to participate in, the quality, etc. Some children with a significant disability may be eligible for Social Security income and disability, but there are others who are in that more gray area who sometimes fall through the cracks.
Lori Walsh:
What about for extended families? Your aunts, your uncles, your grandparents, who are not necessarily going to be the person in the room when they hear the doctor's information, where they hear whoever they're working with? What's your message to those people to how to be supportive of the parents, but also handle the children when they're taking care of them or where they're in a family function?
Tressa Dykstra:
Autism Speaks is one of the most credible resources online that provides support and information for caregivers and extended family. When families come into my clinic, sometimes they do bring grandparents along, or grandparents will call. I feel like those appointments, if they're done right, with any type of healthcare provider, can be informational and educational.
Lori Walsh:
What do you see at Sanford? Families come in to you? How is your day-to-day, and you see the progress? Do you see frustration? Yeah. Tell me about some progress.
Tressa Dykstra:
I get to see a lot of progress. Last week in particular, I had a number of individuals who were doing really well. One of the children that I saw, when I diagnosed him years ago, his family didn't want the word "autism" to be used. They didn't want him to know. They didn't want anybody to know. As a middle-schooler, he had recently written a report on autism and how he identified himself, both strengths and areas of weaknesses, but mostly strengths and what he saw as being part of his autism, things that he could do extraordinarily well because he has autism. I thought that was really, really neat.
Lori Walsh:
How old was he?
Tressa Dykstra:
He was 13.
Lori Walsh:
13. All right. How about your own kids?
Tressa Dykstra:
My own kids are doing very well. We're fortunate to have both a supportive school district and good medical care providers, and I feel like that's the best you can get when you have it on both ends. Special Olympics has been a great, great growing area for us as well to be around other supportive parents, to experience success.
Lori Walsh:
Right, so get online, Autism Speaks. Any other final tips in our last 30 seconds here so that people need to, that you want to leave people with?
Tressa Dykstra:
Parents, trust your gut, and go to the experts. Call your school district, your pediatrician, and for those of you who have typical developing children, teach empathy and kindness, and help them to be supportive to their classmates.
Lori Walsh:
That can be a big deal, right? Because a child with problems in school becomes the kid nobody wants to play with, especially in that elementary school age.
Tressa Dykstra:
Yeah.
Lori Walsh:
Trust your gut, teach some empathy, reach out to the people who can help, and we'll learn more. Tressa Dykstra is a nurse practitioner at Sanford Children's Hospital. Tressa, thanks so much for being here today. We appreciate your time.
Tressa Dykstra:
Thank you for having me.