The following feature was produced by the American Psychological Association.
A recent report by the Centers for Disease Control and Prevention found that one in 88 American children has an autism spectrum disorder, up from a previous estimate of one in 110. Scientists, teachers, parents and psychologists are anxious to learn more about these disorders and what treatments are effective in managing ASD. Laura Schreibman, PhD, has the position of distinguished professor of psychology at the University of California, San Diego, where she has been on the faculty since 1983. She directs the UCSD Autism Intervention Research Program, a federally funded research program focusing on the experimental analysis and treatment of autism. She is the author of three books and more than 140 research articles and book chapters. The Science and Fiction of Autism, published in 2005 by Harvard University Press, is her most recent book.
APA recently posed the following questions to Dr. Schreibman:
APA: More and more children are being diagnosed with autism-related disorders, according to the CDC’s recent report. Do we know what causes autism and why more children are receiving this diagnosis?
Dr. Schreibman: We know that autism is a highly heritable neurodevelopmental disorder. But while research is focusing very heavily on the genetic basis for autism, we have not yet identified either the specific genetic sites or the mechanisms of effect. However, I expect we will see major progress in this area very soon, with some tantalizing findings already coming in at a rapid rate. As to why more children are receiving the diagnosis — there are several possibilities. First, we have broadened the diagnostic label to include a “spectrum” of disorders. Second, we have better diagnostic instruments. Third, we have increased awareness by professionals (such as pediatricians), parents and the general public. Fourth, we are able to identify children at a younger age. Fifth, it is the case that in many places, one receives more and better services for a child with an autism diagnosis than might be available for other special needs. This leads to some pressure for the diagnosis. Sixth, there might be some environmental toxins in our more recent world that somehow interact with a genetically susceptible infant — although nothing yet has been proven.
APA: A recent study published in Pediatrics shows that children born to obese women are more likely to be diagnosed with autism or related developmental delays than the children of slimmer mothers. What is your reaction to this study and do you think we’ll ever be able to find out what exactly causes autism spectrum disorders?
Dr. Schreibman: Any time I read a study like this I am intrigued. However, I have seen so many of these types of studies that I have a hard time getting hopeful that it will be a breakthrough. Also, since maternity obesity has long been known to have serious consequences to the fetus, I am not surprised that autism might be one of those consequences. I do not mean to suggest this study is not important since any connection with autism is important. I just believe that we are still a long way off from being able to identify a true 100 percent association between any factor and ASD. Do I think we will ever get there? I like to think so. But I and others believe that ASD is not a single disorder and thus it is unlikely there is a single cause. We are looking at many specific disorders and these likely have different causes, different courses and different prognoses. Our challenge, and it is a monumental one, is to finally understand this exceedingly complex disorder we call ASD and the many biological and environmental factors that may be responsible. However, I am optimistic that we will indeed one day have answers.
APA: Recent research has been moving toward individualized treatments for autistic children. Why is it so difficult to find a “one-size-fits-all” treatment for these disorders?
Dr. Schreibman: Over the many years that effective interventions have existed for autism, researchers and clinicians have noted that treatment outcome is highly variable for this population. Even with our very best treatments, some children fail to respond, even minimally. However, variability in treatment response should not be surprising in that the nature of the autism spectrum is such that there is a high degree of variability in the population. There are factors other than the treatment that determine outcome. These include child characteristics (again, highly variable across children), interaction of specific treatment and skills being taught, parent and family variables and cultural variables. Considering all these factors, it would be highly surprising if any single form of treatment would be effective for all children. Much treatment research is now heading toward understanding the variables that affect treatment response and “predictors” of treatment outcome, and toward using this information to help tailor treatments for individual children. This should lead to an overall higher positive treatment response across all children with autism.
For many years, and still today, many researchers have focused on comparing one treatment to another treatment, or a treatment versus “usual care” in the community. In my own opinion, the idea of trying to figure out which specific treatment is “best” is a dead issue. We need to stop trying to figure out a one-size-fits-all treatment and focus on a technology that allows us to be open minded about what effective and evidence-based treatments are available and how to best fit the combination of these treatments to the specific features and needs of the individual child.
APA: What are the most effective treatments for autism spectrum disorders?
Dr. Schreibman: Unfortunately, we have no cure for autism. Only behavioral treatment has been empirically proven to effect positive change in these children. For example, we can identify principles by which environmental events affect behavior. The identification of these principles allowed for the development of highly structured treatments that were the first to be proven scientifically as effective. I refer here primarily to the work of Dr. Ivar Lovaas at UCLA. This form of treatment involves presenting the child with several learning “trials” in a precise and repetitive manner such that instructions are consistent and correct responses are rewarded with food, praise or access to a preferred activity. These trials are repeated until the child demonstrates mastery of the specific skill being taught. Continued research by behavior analysts identified important limitations to these treatments for some youngsters and this led to the development of more naturalistic, less structured treatments. Such naturalistic interventions involve procedures that are more play-based and child-directed. The idea is to make the therapy more fun and enjoyable so the child is more likely to want to participate in the treatment. In addition, these naturalistic therapies involve interactions that are more like natural adult-child interactions and take place in everyday settings. These improvements allow for the child to more easily learn to use their new skills in their normal environment. In addition, these naturalistic forms of treatment are easily used by the parents during their regular interactions with their child and thus increase the likelihood they will apply these effective treatments with their child.
The earlier identification of children at-risk for an ASD has resulted in the ability to provide early intensive treatment and allows for substantial improvements in many of these very young children. However, the ability to treat such young children has required that we adapt and broaden our existing behavioral interventions for these toddlers. Thus, we now see strategies that follow more of a developmental model, with intervention directed at those behaviors infants and toddlers are more likely to show. These include engaging socially with adults, playing, imitating adults, using nonverbal gestures to communicate and the like. These skills are the building blocks that are so important in the development of more advanced skills, such as language.
APA: At what age are most children diagnosed with autism? How does an earlier diagnosis aid in treating the disorder?
Dr. Schreibman: While researchers are increasingly able to reliably diagnosis these children at younger ages (as early as about 15 to 18 months, or even earlier), most researchers and clinicians are reluctant to give these very young children a formal autism diagnosis before the age of 2 years. These children are typically called “at risk” or given a “provisional” autism diagnosis. Worrisome early features include failing to respond to their name, failure to use eye-gaze to direct attention of others, lack of interest in toys, failure to imitate, lack of interest in other people and the like. However, despite our ability to reliably diagnosis ASD at earlier ages, the average age at which children in the U.S. are diagnosed is still 4 years.
The earlier the diagnosis, the earlier the opportunity for intervention. Research has strongly supported the advantage of early intervention in the overall outcome for children with autism. While currently in most places in the country educational supports are available starting at age 36 months, it is now apparent that intensive treatment at earlier ages can be extremely important.
APA: What are some of the most common misconceptions about autistic children?
Dr. Schreibman: I believe the idea that somehow vaccines are responsible or contribute to autism is something that just won’t die. Despite the lack of any sound empirical evidence for a connection, it just seems to hang on.
I also believe that many people conceptualize autism as a disorder wherein the child sits in a corner rocking or banging his head. I think recognition and appreciation of the much more common lesser forms of the disorder is still lacking. Of course, on the other side is the misconception that all individuals with autism are savants — sort of the “Rain Man” phenomenon.
Not really a misconception but I think one of the biggest challenges we, as researchers and clinicians, face is the promotion of blatantly bogus or even dangerous “treatments” for autism. Possibly the best example of what I could consider a dangerous treatment is facilitated communication, wherein children with autism are “facilitated” by an adult who supports their hand or arm as the child activates a keypad or other letter display. Via this method, children have supposedly written prose, told their parents they love them, written poetry, etc. These messages led many to believe they were really produced by the child when in fact a number of scientific studies have shown the messages were instead produced by the adult facilitator. Parents were again crushed to find out their children were not producing prose and poetry. But worse were the allegations of abuse produced by these so-called communications and these led to children being placed outside the home, parents arrested, and so on. Parents are understandably desperate to do what is best for their child but often are not able to distinguish what is scientifically supported and what is not.
APA: How can parents help children with autism spectrum disorders thrive?
Dr. Schreibman: The best thing parents can do is to become informed. I have worked with families for many years and have always been impressed with their motivation to help their children. But a good part of helping is to understand the nature of their child’s challenges and being an informed consumer of services. Ask questions, expect answers, understand the treatment and look for objective evidence of effectiveness, be an advocate for your child, work with your child and coordinate your efforts with treatment providers. And be sure the treatments being applied to your child have scientific support. Unfortunately, there is a lot of snake oil out there.
Dr. Laura Schreibman can be contacted by email or at (858) 534-6279.
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