Interviewer: Why should autism be diagnosed early in life? We'll talk about that next on The Scope.
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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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