Announcer: Welcome to ASHA Network News, a continuing series that highlights issues of interest to ASHA members.
Joe Cerquone: Information for parents of children who may have autism or who are autistic is the focus of our podcast today. And to help with that, we have as our guest, Amy Wetherby, PhD. Dr. Wetherby is director of the Autism Institute at Florida State University, as well as the executive director of its Center for Autism and Related Disabilities. Dr. Wetherby, thank you for joining us.
Dr. Amy Wetherby: Thank you, it’s a pleasure to be with you.
Joe Cerquone: A speech-language pathologist and a Fellow of the American Speech-Language-Hearing Association, Dr. Wetherby has had a decades-long career as a leading expert on autism. She has been published and presented extensively, as well as led research funded by the U.S. Department of Education, the National Institutes of Health, and the organization Autism Speaks. In addition, Dr. Wetherby has served on the National Academy of Sciences Committee for Educational Interventions for Children with Autism. It was announced recently that Dr. Wetherby will be one of two principal investigators for a major study that will examine the efficacy of early intervention for children diagnosed with autism spectrum disorders by age 18 months. Dr. Wetherby, I would like to begin by asking a very simple question. What is autism?
Dr. Amy Wetherby: Autism—referred to as Autism Spectrum Disorders—is a collection of neurodevelopmental disorders that have three primary features: impairment in social interaction, impairment in verbal and nonverbal communication, and restricted interest and repetitive behaviors.
Joe Cerquone: Of late, it’s become fairly well-known that the number of cases of autism is on the rise. What accounts for that?
Dr. Amy Wetherby: Well, there are actually a lot of reasons that can explain the increased in prevalence. A few of them are that the diagnostic criteria have broadened. We have better diagnostic tools, public awareness, and some more families are speaking the diagnosis, more physicians and other professionals are pursuing the diagnosis. And also in 1991, the Individuals with Disabilities Education Act added autism as an eligibility category.
Joe Cerquone: I see.
Dr. Amy Wetherby: So, starting in 1992, the schools were required to now count autism. So, all of those reasons combined do contribute, but there are also may be an increase in the prevalence as well.
Joe Cerquone: I see. Well, you opened by giving very concise description of what it is. I was wondering if you could enlarge upon that? What are some of the common manifestations of a person who has autism?
Dr. Amy Wetherby: Well, autism spectrum can be very heterogenous. And so, it depends on what age and level of functioning. So, if I focus on younger children—infants, preschool children, toddlers—the primary features they’re going to involve difficulty interacting, taking turns, initiating communication, using eye gaze, and coordinating that with gestures and sounds to communicate, difficulty knowing how to draw others like parents’ attention or peers’ attention, the things that are interesting, and then sharing that interests as social reciprocity. And then the other set of features really are about that—the restricted interest in repetitive behaviors. So this can manifest in a child getting very fixated visually on things or a child doing repetitive movements with certain objects. It can also include repetitive motor movements, posturing of the body, flapping on the hands. And then as children get older—or those that grow on to learn to talk—then the symptoms look a little bit different. And those can include difficulty engaging in conversation, maintaining a topic in conversation, being able to talk about what the other person is interested and that kind of social reciprocity. And it can also involve very fixated interest on very limited number of topics. So it’s really a very wide spectrum. And we can see a lot of difference in terms of the degree of social impairment, the degree of intellectual impairment, the degree of language impairment.
Joe Cerquone: How early in life can autism begin to manifest itself?
Dr. Amy Wetherby: Well, the median age for diagnosis in the United States, based on the new CDC study, is 4 1/2 years of age. So most children are not diagnosed ’til at least that age. But we now have a lot more information about how to diagnose earlier and we have better tools. So, the research shows that we can diagnose children with autism by 24 months of age. However, most communities are not really geared up to do that. They should be diagnosed by 3-5, for sure. And the hope is that in the near future more and more will be diagnosed in down to 2. Now, there’s research going on and new diagnostic tools being tested to go down to 1 year of age.
Joe Cerquone: If parents suspect that their child has autism, what should they do?
Dr. Amy Wetherby: The first thing they want to do is really ask for help—whoever they’re comfortable asking for help—either their doctor, their pediatrician, or primary care provider, or is there someone within the school system or someone within the early intervention system. So, they really want to seek help as soon as they suspect that something—that it might be autism. And the reason that that’s important is because one of the things we’ve learned is that early intervention makes a big difference. So, the sooner you can figure out if it’s autism then the sooner you can start intervention.
Joe Cerquone: What is the kind of care that can make a difference and who are the professionals that are best educated and trained to provide it?
Dr. Amy Wetherby: Well, there’s not—the research does not suggest that there’s anyone or only one way to effectively treat autism. But right now, the strongest evidence suggests an educational approach to treatment. And so, again, that’s kind of vary depending on the age. So for young children, there’s an emphasis for toddlers to work with the parents and train the parents. And so for parents of young children and that could be a speech-language pathologist or an early interventionist or a psychologist or other professionals, early childhood special ed, who would have expertise. As you get older, now we’re then thinking about education within the school system and children with autism can be educated in special ed class or a general ed class. And more and more children who get good early intervention who have autism are making it in a general ed class. We are going to be expecting at least 50 percent more of them to function well in a general ed class at least that the teacher has some training and is able to provide a little bit of special support for the student with autism. So then you’re going to have a team in the school which could include the teacher, the speech pathologist, might be also OT, PT or other support, and then also the behavior specialist.
Joe Cerquone: What is it about early intervention that makes it so important?
Dr. Amy Wetherby: Well, it’s probably more about the child. That the younger the child is, the more malleable or plastic their brain is. And so that’s probably the underlying reason why we can have more effectiveness when the child is young. And I think related to that is that some of the symptoms of autism actually create secondary challenges. So, for example, the young child has a primary symptom involving difficulties with social interaction and communication, that can then lead to behavior problems which are really secondary to the difficulty communicating. So as children get older, they can have very significant behavior problems. When you catch it early, those behavior problems are much smaller or having yet unfolded. So catching it early, it’s easier to treat early. The other part of the restricted interest can then become very ingrained as children get older and if you catch that early, it’s not as severe as ingrained.
Joe Cerquone: I see. Well, Dr. Wetherby, autism has been a professional focus of yours for many years. I’m sure over that period of time, you’ve come across some misconceptions about it. Do you care to share what some of those are?
Dr. Amy Wetherby: Well, I think the theme of the misconceptions—I have been at this for a long time, more than 30 years—and I think the theme of the misconceptions relate to understanding what evidences, sorting out evidence-based practice and decisions from what, you know, out in the media or what’s being marketed, which may not be evidence studies. And so there have been a lot of things. Just to give an example, facilitated communication came along and was marketed and a lot of media attention, but then when the serious research studies were done—many dozens, about three or four dozen studies—a lot of effort went into showing that technique, at least in general, for groups, did not work. There may be individual cases where it might be helpful. So it gets very confusing when we talk about in an individual case and knowing that something is working, but just really don’t know why until you start looking at patterns of children and groups of children ’cause it may simply be a coincidence. And so conclusions can get drawn on an individual case and really not apply to the a group of students or other individuals.
Joe Cerquone: Well, to that point about evidence, what do you say to parents about their current controversy over whether a preservative in vaccines causes autism?
Dr. Amy Wetherby: Well the preservative that you are referring to is called thimerosal and I think a few points are important to sort out. First of all, because of public pressure, thimerosal has been removed from all vaccines in the United States, with the exception of the influenza vaccine. And so—I believe it’s in 2003—and so, it should be off the shelves at this point. And that’s in the United States. It may not be the case in other countries. Secondly, there’s been a lot of research on thimerosal, at least a small amount that has been in the past in vaccines. And a lot of studies that had been done by many agencies that have reviewed the research and there has not been scientific evidence that supports the relationship between thimerosal in the vaccines and autism. Now this is a very complex problem to study, so that doesn’t mean that we know everything there is that we need to know about it. But the other, you know, there’s other evidence to suggest that it may not be that. But since the thimerosal has been removed, there’s not yet any evidence to suggest the prevalence is decreasing. In fact, there’s a little bit of evidence to suggest still increasing a bit. So certainly, the thimerosal is not a primary factor at this point in time since they have been removed in United States. I think the whole issue of vaccinations is more than just the thimerosal parents are worried about and again there’s been a lot of study and there has not been a connection. One of the other vaccine that’s since been brought up as the concern is the MMR which is usually given at 18 months. And in that regard, there never was thimerosal in the MMR, but the MMR is still a concern to some. And what I would say about that is there’s not yet evidence linking it up. But if parents are worried about it, the most important thing for them to do is to talk to their doctor about it and inquire whether it’s best for their child, so they consider asking to break it up or asking for a more protracted schedule. I think it’s important to keep in mind that vaccinations are there for a very important reason, to combat diseases that can lead to death in children.
Joe Cerquone: Well, you’ve been involved in quite a bit of research over time, would you please talk about some of the research that you’re currently working on?
Dr. Amy Wetherby: The research that I’m working on right now is a very exciting point in my career. There are two major focuses. One is on early detection. I have a number of grants that have been funded by the U.S. Department of Ed, the National Institutes of Health, and the CDC, more recently, focusing on trying to identify the early red flags of autism spectrum in the second year of life. So really focusing in on the 12-24 months. And then related to that, my second area of focus is on early intervention. So, I have a new grant from Autism Speaks, as well as the National Institutes of Mental Health in collaboration with Dr. Juliann Woods here at FSU and with Dr. Cathy Lord at the University of Michigan. And we are conducting a randomized group treatment study of a parent-implemented program with toddlers with autism who are identified very early.
Joe Cerquone: Very good. Just to cap things off here, looking down the road, what do you think the future holds in terms of caring for children with autism? And what is the most critical piece of advice that you care to give to parents?
Dr. Amy Wetherby: There have been a lot of good studies in the last 5 years that have been able to use very good methodology with larger samples using randomized group design and what they have helped us learn about are the active ingredients of treatment. So, this is not going to be a one size fits all. This is a very diverse population and so I think where we’re headed is better understanding which children, depending on their particular strength and weaknesses, are going to respond best to which treatments and really understanding what active ingredient in the treatment is going to be the most important. So, in our early intervention study, as an example, we’re trying to understand more about active engagement. How do you help that family, help the child, be more actively engaged, more minutes in the hour, more hours in the day, which we think will then impact the child’s outcome. So, we’re studying that very systematically as the active ingredient of our early intervention program. So, I think that when we put studies together, there will be a convergence of understanding the evidence in terms of what are the critical active ingredients that are important and then understanding what dosage, what intensity for their particular child.
Joe Cerquone: And in the near term, what is the most critical piece of advice that you have for parents?
Dr. Amy Wetherby: I think it’s a good time to get intervention as soon as possible and really parents can pursue that before they receive the diagnosis if their child is having documented delays. And so getting in the intervention early for their particular child really means now is earlier than next year. So, really time to get the intervention going, the National Academy of Sciences report suggested 5 hours a day, 5 days a week, or at least 25 hours a week. And so really trying to figure out how to get their child in a good quality program that addresses the areas that students with autism or children with autism have in terms of social communication and more flexible behaviors and trying to get that going at least, you know, 5 hours a day, 5 days a week. And then having the parents be involved. The research does show that family involvement is critical. Being involved in as much as they can—collaborating with intervention or school system.
Joe Cerquone: Very good. Dr. Wetherby, thank you very much for taking time to be on ASHA Network News.
Dr. Amy Wetherby: You’re very welcome, it was a pleasure.
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