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A recent study shows that the number of children…
Date Recorded
June 03, 2019 Health Topics (The Scope Radio)
Kids Health
Mental Health Science Topics
Health Sciences Transcription
Interviewer: Why should autism be diagnosed early in life? We'll talk about that next on The Scope.
Announcer: Examining the latest research and telling you about the latest breakthroughs, the "Science and Research Show" is on The Scope.
Interviewer: I'm talking with Dr. Debbie Bilder. She's Principal Investigator of the Utah Registry Of Autism and Developmental Disabilities. We'll be talking about the need to diagnose children with autism spectrum disorder early in life.
So, Dr. Bilder, if I were sitting next to a three or four-year-old who has autism spectrum disorder, what might I notice about this child that may be a little different from a typically developing child?
Dr. Bilder: Well, that child may not be making eye contact or may be preoccupied with something that is really hard to separate them from, in particular something which is not a typical toy that a child that age might be interested in.
Maybe when you do talk with that child, that child would have a particular interest that that child would go on and on about regardless of whether you may share that interest or not. A child may also have self-stimulatory behaviors, like hand flapping or even looking at things through the corner of their eye.
Children with autism have a really difficult time connecting effectively with their peers. So that child may be sitting on the bench next to other friends or the other children are out playing on the playground.
Interviewer: And is it usually obvious? I mean, if I were a parent, would I just know that, you know, maybe there's something a little different about my child?
Dr. Bilder: For parents, particularly, you know, thinking about a parent in which that's the first child, so they don't have a child to compare their first child to, they might notice that there are significant delays. Some children with autism also have other delays as well. So there would be a delay in language that their pediatrician or family practice doctor would mention to them. They may have difficulty in interacting with other children or choose not to play with other children.
But the majority of children with autism who have normal [intellectual 00:02:06] ability, which is the majority of children with autism, it may not be apparent to a parent who does not have another child to compare that child to.
Interviewer: I think you would argue that it's important to make that diagnosis, to make that identification early on.
Dr. Bilder: Well, we know that children who are identified by two or three years of age and receive treatment right away, intensive treatment can really optimize their ability to function, optimize their ability to be in a school classroom with other neurotypical children.
And some children who receive this intensive intervention may even no longer meet criteria for autism when they get older, and even though that's a very small percentage, we want to give children whatever shot they can get to be able to develop these skills when their brain is most capable of learning them.
Interviewer: So it's more difficult to make this intervention effective later in life?
Dr. Bilder: Yes. There's a developmental window as we develop language, as we develop our interactive skills. Clearly, there's a time in which our brains are intended to develop these skills. And if we could take advantage of that in these children, even though they may not develop those skills inherently, they can be taught these skills and that is the time at which their brains are going to be most receptive to that education.
Interviewer: So you've been involved in some large-scale research recently, looking at the ages at which children are getting that diagnosis from autism spectrum disorder. What did you find?
Dr. Bilder: Well, as far as the diagnosis itself, as far as receiving a diagnosis, we did not see a reduction in the age at which that child first received a diagnosis. The median age, when we looked at this for children who were four years of age back in 2010, was about 35 months here in Utah, and similarly it was 35 months two years later.
And then this particular study actually extended over six years. We participated in two of those years that I just mentioned. But even looking across the six years, there was no significant difference in the median age at which these children across seven different sites were identified with autism spectrum disorder.
The focus of this study perhaps goes even a little bit before then. The real aim is to have these children recognized as having a developmental concern so that they then are able to access a comprehensive evaluation.
So for those children when they can access and they do access a comprehensive evaluation even before the diagnosis is made, the developmental delays will be identified and you can initiate treatment even before you have a clear diagnosis of autism.
Interviewer: And so you said that there was no change in these two years that you looked at the numbers of diagnoses. I mean, what does that mean to you? Why does that concern you?
Dr. Bilder: Well, there was no change in the age at which these children were identified with autism. And what concerns me is that we as medical providers, as medical professionals despite our best efforts and there is a lot of work going into early screening so we can subsequently have early identification of autism to give these children that opportunity.
Despite these efforts, that age at which they're first presenting for a comprehensive developmental evaluation is not going downward. So it makes me really wonder, well, what about the process we have in place, because we're working really hard to initiate this process, what about this is not ultimately leading to the goal in which it was established, which is to reduce the age at which these children can access treatment?
Interviewer: And do you have any insights into what barriers are in place there?
Dr. Bilder: Well, this particular study was an epidemiologic study. So its purpose was to look at this in a very systematic way across multiple sites so that we can say this is a problem, and with an epidemiologic study, it creates the validity that this really is a problem.
What's up to future research and we even have fabulous researchers here in our Department of Pediatrics, what's up for these researchers is not just to accept that there's a problem, but then to look to see, well, where is this process breaking down, and they're doing that. And I'm looking forward to seeing the results they come up with, because that's the type of research, even though not done at an epidemiologic level, but done on a more fine-tuned, kind of make more granular level to figure out what exactly needs to change so that we can be successful.
Interviewer: I'm wondering if you think part of the problem might be that there might be a reluctance of parents to admit that there's something different with their child.
Dr. Bilder: Part of this process is beyond the typical office setting in regards to the pediatrician or the family doctor. Part of this process in addition to identifying which children are screening positive and then making the referral for those children to obtain a comprehensive evaluation is the part about it which requires the parent to be able to do so.
And if that parent were having a difficult time accepting that there might be something wrong with their child, that can unintentionally affect their willingness and speed at which they access a comprehensive evaluation for their child.
So as we look at this bigger picture, recognizing and measuring the gaps between that positive screen and the time at which the child presented for a comprehensive evaluation could really help us get a sense for if there is a delay, what could be causing it?
Interviewer: Do you have a recommendation for parents in maybe looking at their child or thinking about their child or their future or being screened for autism spectrum disorder?
Dr. Bilder: Well, every child, regardless of whether there is a concern or not, should be screened by their pediatrician or family practice doctor at 18 months of age and again at 24 months of age.
My recommendation is that when that medical provider expresses concern and makes the recommendation of referral to allow themselves to ask that provider, you know what specifically are they concerned about to be able to have an opportunity to be convinced that this is important.
As far as red flags for parents, like things to look out for, you want to look for a baby at six months of age, they should be smiling, having a reciprocal smile. So the mother smiles or the dad smiles and they smile right back and expressing joy even their facial expression of joy by six months of age. You should be expecting back and forth sounds and other facial expressions certainly by nine months of age.
They should be babbling or at least pointing to objects by 12 months of age and indicating that desire to engage and initiate that interaction with the caregiver. Using single words by 16 months of age. And then if by 24 months of age they're not using two words together in a meaningful way, that also is a red flag that they need to be evaluated.
I think the big red flag that's important for parents to be aware of because primary care providers go through these developmental milestones routinely during their well-child visits, the particularly important red flag for parents to be aware of is that if their child loses any social skills or language skills, then they really need an immediate visit with their primary care doctor even before the next well-child check. That is not normal. That itself should initiate a visit to their primary care provider for further screening.
Interviewer: And what's next for your research?
Dr. Bilder: We are excited to have received a four-year grant from the Centers for Disease Control and Prevention through the Autism and Developmental Disabilities Monitoring Network. We are thrilled to be part of this. What this funding does it allows us, the University of Utah, along with the Utah Department of Health and the Utah State Board of Education, to really enhance our case finding for children who are affected by autism as well as allowing Utah to be part of these national prevalence numbers that are established for the U.S.
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The number of children diagnosed with autism spectrum disorder during early childhood has remained stagnant over many years.
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In the United States, 1 in 88 children are…
Date Recorded
March 26, 2014 Health Topics (The Scope Radio)
Kids Health Transcription
Recording: Medical news and research from University of Utah physicians and specialists you can use for have a happier and healthier life. You're listening to The Scope.
Interviewer: If you are trying to understand autism a little better, this is the podcast for you. We're with Dr. Debbie Bilder. She is the medical director for the Autism Spectrum Disorder Clinic. Let's take a couple of minutes to understand autism a little better from the perspective of somebody who knows nothing, like me, for example.
First of all, what is Autism Spectrum Disorder?
Dr. Debbie Bilder: Autism Spectrum Disorder is a neurodevelopmental condition that starts in very early childhood, if not birth, and significantly affects an individual's ability to socialize with others, to communicate and interact with others, and they find themselves with non-purposeful rituals, intense interests, excessive sensitivity to sensory stimuli.
Interviewer: Yeah, to the point where it's like debilitating to functioning in the world, or how bad is it generally?
Dr. Debbie Bilder: To the point where it really interferes with their ability to develop relationships with their peers, with those around them, to follow the general social norms and expectations in their home, in school and work environment to complete tasks they realize they need to complete, but may get excessively stuck on small pieces of it and being able to take it to full completion.
Interviewer: What causes it? Do we have any idea, or are there a lot of causes at this point?
Dr. Debbie Bilder: We assume that there's a strong genetic link to Autism because we see it run in families. For example, if one child an Autism Spectrum Disorder, the chances that a subsequent child born to those parents will have an Autism Spectrum Disorder is about 20%. However, it has been quite allusive as to what genetic cause is really going on.
It's not like blue eyes, or blond hair, in which you could see how it flows through families quite clearly, it's much more difficult to understand and predict.
Interviewer: Yeah.
Dr. Debbie Bilder: As far as environmental causes, I think most of us feel there probably is something out there, but I can let you know that we have yet to find that smoking gun. We know that there are a couple of drugs that may increase the risk for an Autism Spectrum Disorder, such as thalidomide and caproic acid. We know that certain infections that occur to the mother during pregnancy, such as CMB, could cause this, but there is still so many more questions than we have answers for.
Interviewer: What about the difference between giving the defective gene to a child at conception versus, like you said, maybe the atmosphere or a drug that a woman takes while she is pregnant might mutate those genes? How does that play out?
Dr. Debbie Bilder: My background isn't as a geneticist, but my general understanding of this is that some genes may run through families, others are created, as far as gene abnormalities, at the time that the child is conceived. So just because a child has a genetic disorder doesn't mean that particular gene is also affecting the mother or the father.
Interviewer: How common is Autism Spectrum Disorder in the United States?
Dr. Debbie Bilder: The last CDC Autism and Developmental Disabilities Monitoring Network that looks at the presence of Autism Spectrum Disorder by looking at specific communities, we in Utah happen to be one of the fourteen sites in which they look for the prevalence of Autism Spectrum Disorder, was published a couple of years ago and it was about one in eighty-eight eight year old children were affected with Autism Spectrum Disorder.
Interviewer: So give me some perspective. Is that a lot? Is that not a lot?
Dr. Debbie Bilder: Do you know, that's over 1% and here in Utah, we found that one in 47 children who are eight years of age in our surveillance area were affected by Autism Spectrum Disorder. That's 2%. It's reasonable to say that this is a disorder which is not uncommon and affects 2% of our population.
Interviewer: So a family has a child, how do they know if their child has autism? Is there genetic testing, first of all that's available and the second question is, what are the symptoms?
Dr. Debbie Bilder: Genetic testing is not going to determine whether a child has autism or doesn't have Autism Spectrum Disorder, rather genetic testing done in individuals with Autism Spectrum Disorder may be able to identify the underlying genetic cause. So really what parent's need to be aware of are those first signs that lets them know that they need to act early to bring their child to the attention of their primary care provider is a good place, or if they are involved in preschool. Just getting them to the attention of a provider who can continue the screening process and refer them on for specific testing if concerns continue to arise.
Interviewer: How important is that early interaction?
Dr. Debbie Bilder: That is critical. It is absolutely critical to identify these children experiencing Autism Spectrum Disorder as soon as possible. The reason why this is critical is because that young brain is still very plastic, very malleable, and we have this amazing developmental window going on for a few years where we can make significant changes in that child's ability to learn, to function, to socialize, to speak . . .
Interviewer: Really life changing for the child.
Dr. Debbie Bilder: Life changing.
Interviewer: Gotcha.
Dr. Debbie Bilder: We want to be able to take advantage of that window in every child.
Interviewer: So I would imagine right a now a parent is like, "Give me a couple of things I can look for."
Dr. Debbie Bilder: So the CDC has a very nice Autism Spectrum Disorder fact sheet that can be Googled. It really is part of the process that they've developed called "Learn the Signs, Act Early." As far as what they will highlight, so I'll share that with you, is recognizing when a child does not have pretend play, pretending to be something else or taking on the role of something that they're not.
Also, not pointing to objects that they are interested in, such as a plane goes by and a child will point up and want to direct the parent or sibling's attention to that really cool plane that just flew over. Not looking at objects when other people point to them, avoiding eye contact and really just wanting to isolate, not seeking out the company of others, particularly those familiar to them.
Children, especially as they get a little older, having difficulty understanding other people's feelings and other people's perspective, and also, like young children, not wanting to be cuddled or held. Once again, wanting to be kind of left alone.
Interviewer: Those symptoms that you mentioned, how many of them do you need to have before you're like, this is something of concern? Just one or multiple?
Dr. Debbie Bilder: If you have one, I think it is worthwhile to see your pediatrician or family practice doctor because from there they can do a more formal screening.
Interviewer: Any final thoughts for our listeners about autism.
Dr. Debbie Bilder: Well, I think just once again reiterating how important it is to identify children with Autism Spectrum Disorder as early as possible so that we can take full advantage of that developmental window they provide us to make a difference in their life and teach them how to learn so that they can engage in a more mainstream school environment than they otherwise may require.
Recording: We're your daily dose of science, conversation, medicine. This is The Scope, University of Utah Health Sciences Radio.
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Date Recorded
November 08, 2012
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