Christopher J Smith, PhD, SARRC Research Director explains how a new screening technique could improve the lives of children with Autism.
Interview conducted by Ivanhoe Broadcast News in May 2019.
Explain this project for us.
SMITH: Many times pediatricians or parents have concerns and families don’t know where to turn. And then when they do find the right path they get they face long wait lists or a shortage of providers and they’re not able to get an evaluation in a timely manner. So, what we did with that with this project was we tried to address various areas where the systems are broken. Pediatricians aren’t screening well enough. And when they do screen and they have concerns, then they send the family into this path that doesn’t have a clear outcome, or they face very long wait lists at that point. We wanted to know that, if we could start screening kids earlier, would they be able to get into treatment sooner? So, what we did was we created a standardized screening procedure for pediatricians to follow during well baby visits. The 12, 18 and 24 months well baby visit, pediatricians use a standard, structured screening questionnaire to determine whether or not the child had any kind of delays. And if they did, they were given information to contact us for a fast and free evaluation. It was all covered by the expenses of the grant. So we saw most families that came into this project within probably three months of screening, which is really unheard of outside of this projects. It takes much, much longer. And because there’s so much uncertainty about the process for obtaining a diagnosis that makes pediatricians and other professionals hesitant to screen and advise families unless they see absolutely clear impairments. And what we want to do is not wait until we see absolutely clear impairments. We want to act on those early warning signs and get parents to seek an evaluation sooner so they can get into treatment sooner because we know that early intensive behavioral intervention is the single most important thing that we can do for kids with autism. That’s going to help them make the most gains and reach their own individualized level of optimal performance.
What was the lower screening age limit?
SMITH: The American Academy of Pediatrics recommends that pediatricians screen at 18 and 24 months, and they suggest that and give suggestions as to what pediatricians should be using to screen. But a lot of pediatricians treat that as kind of guidelines or suggestions. Many pediatricians still rely on their own clinical judgment, and many are very good. Many are excellent at identifying early warning signs and knowing how to act. Some pediatricians are not so great. I mean, there’s a range of their skill level to identify early warning signs of autism and refer. So, what we want to do is kind of reduce that variability and get all pediatricians to use a standardized, structured screening questionnaire. Now some of the most common screening questionnaires start for use at age 18 months. The one that we used in the screening projects can start at 12 months. That’s why we chose the screening questionnaire that we did. So that’s the message really for pediatricians, to look for a screening questionnaire that they can use with very young kids and base their decision about whether or not to refer on the results of the screening questionnaire instead of their own clinical judgment which can be quite variable among the whole profession.
How many families came through the project?
SMITH: Between seven and eight hundred.
Tell us a little bit about the results.
SMITH: What we saw as a result of the project is that most children who were identified in this project, the most common age for diagnosis was roughly 22 months. And that is about three years earlier than what we would see outside of this project through the standard procedures for screening and diagnosis that exists outside of this research project. The common age for diagnosis is about fifty-six months in Arizona. By starting this project and training pediatricians to screen earlier and refer, we were able to lower the age of diagnosis to roughly 22 months.
What does that mean for those kids?
SMITH: We gave them three years back that they could better spend on intervention instead of parents constantly worrying about whether or not their child will have delays, is this something we should be concerned about, is this something we should follow up on, or waiting on wait lists. We took all of that lost time that happens as a result of the standard procedures for screening and diagnosis and gave that back to families that they could better spend on intervention and helping their children move forward.
What do you do with this information?
SMITH: Whenever you do a project like this, the end result is to write a publication and get it published and have the masses be able to view it and hopefully follow those procedures. We are trying to take a step further and implement what we’ve learned about these procedures into common practice. So, take it out of the research room and be able to increase our screening network and train other pediatricians to screen and evaluate. It’s not all falling on the pediatricians’ shoulders. We know that we need more diagnosticians or more psychologists that are trained and willing to perform diagnostic evaluations for families at reasonable cost or accept their insurance or accept Medicaid and everybody work together in the community to shorten the length of time between parent concerns and diagnostic evaluation. That’s what we’re trying to do in the community.
But there’s still the delay between evaluation and potential diagnosis, right?
SMITH: No, evaluation is diagnosis. There’s a delay between diagnosis and treatment. So that’s the next thing to tackle. There’s many different parts of the system that are broken, and certainly it takes too long from parent concerns to diagnosis. Part of the reason of that is there’s not standardized, structured screening procedures. And then once the parents get a child screened and they get referred, now the parents face long waitlists and a shortage of professionals. That’s another problem in the system. And then once a child gets a diagnosis, now there’s a shortage of professionals available who can provide evidence based treatment for the child and begin and help them to begin moving forward at a level that really needs a lot of intensity that is absolutely necessary to have children make the gains that they need to really take advantage of those early developmental years when the brain has the most neuroplasticity. So even if we still have delays from diagnosis to starting treatment, if we can improve the age of diagnosis, we can move that whole process earlier. So If the current age of diagnosis is about fifty six months and it takes parents a year to start a treatment program, well, then they’re not going to be starting that until the child is sixty eight months. If we can lower that age from 56 months to 22 months, and it still takes a year, well then they’re still starting a treatment program before they turn three. And that’s much better than what we see in the general population.
What haven’t I asked you about the study or where you go from here that you would like us to include?
SMITH: Where we want to go is we want to increase the number of providers in the community who can provide these diagnostic evaluations for autism. So when a parent has concerns or a pediatrician says there’s some developmental concerns here, you need to seek an evaluation, parents can pick up the phone and easily find somebody who can perform that evaluation and get their child evaluated within a reasonable amount of time. As a parent you can’t feel like my child’s delayed and I need to get this diagnostic evaluation and then call a provider and hear them say, “I can see you in two years.” That’s two thirds of the child’s life at that point, you can’t face that. There’s something wrong with our system. So, we need to increase the number of providers. And we’re taking steps now to do that because when we have that, we need to also then increase the number of pediatricians that are using this structured and standardized screening questionnaire to screen, but they absolutely need someplace to refer parents to. So, both sides of the coin need attention. And we’re focusing on giving attention to both sides of that problem.
How many pediatricians were using this database at the beginning of the project?
SMITH: Roughly one hundred and nine pediatricians.
What’s the benefit of autism being diagnosed early and what signs should parents look for?
SMITH: It’s important to get it as early as you possibly can because there’s a period of time in a child’s life where their brain has the maximum amount of neuroplasticity. That means that their brain is the most flexible it’s ever going to be for learning and developing new skills. And we know that that’s at its height really from birth to three. So if we can identify autism early in that time period, well, then if they begin an intensive intervention program, the brain is likely to adapt and has the capacity to learn and develop the most amount, the greatest amount of skills it will have, and it’ll be more flexible than it will be after the age of three. So that’s why it’s most important to identify autism early. So, we’re taking advantage of the brain’s maximum neuroplasticity and its ability to learn and develop new skills.
And what sign should parents look out for?
SMITH: Parents should really be looking for the absence of things that show them that their child is typically developing. If the child isn’t making eye contact fluidly and frequently throughout the day across multiple situations, then they should be concerned. If the child isn’t making attempts to communicate with them, then they should be concerned. If the child is engaging in what seems to be kind of odd or repetitive behaviors instead of what looks like typical play, then they should be concerned. But one of the most important things that parents can pay attention to is that any parent of any typically developing child knows that their child doesn’t leave them alone for very long. Every few minutes, the kids are checking in with the parents. They want to be with their parents. They want to involve them in play. They want to be engaged with them. And they’re easily excited and happy about interaction with their parents and other people. If those things are missing in a child, if a child is not seeking out attention from their parents. It should be often. It should be frequent. It should be intense. If that’s missing, that’s probably one of the biggest red flags of concern. We see parents all the time when they come in to get their child evaluated and diagnosed after the age of three, four, five, six and their report about them when they were a baby was there was such a good baby. They could play alone for so long. Well That’s not what a typically developing baby should be doing. That typically developing baby should be seeking out attention from their caregivers, their siblings, for multiple reasons, not only for food and attention but for play and interaction.
That’s so interesting because I hear my friends say that my baby’s good. He’ll stay alone. So, are there signs that parents frequently often sometimes ignore or don’t pick up on?
SMITH: Parents will often ignore or not get concerned about babies that are the so-called good babies. They’re OK being on their own for long periods of time. The interesting thing about it is it’s not causing a problem for the parents. The parents are like, OK, they’re safe. They’re playing. They’re occupied. I can go do this. I can do the millions of other things that I need to do to run this household and take care of my family, but the problem is that the child is not seeking their attention. That is the problem. And if more parents are aware of that that is a problem, well then parents will start to have a problem with it and then seek some help to fix it.
END OF INTERVIEW
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