Autism, or more specifically, Autism Spectrum Disorder (ASD) has gained a higher profile in our culture over the preceding several years. On March 27, 2014, the Centers for Disease Control and Prevention (CDC) released new data on the prevalence of autism in the United States. This surveillance study identified 1 in 68 children (1 in 42 boys and 1 in 189 girls) as having autism spectrum disorder (ASD). In contrast, a new government survey of parents suggests that 1 in 45 children, ages 3 through 17, have been diagnosed with autism spectrum disorder (ASD). This is notably higher than the official government estimate. Along with these prevalence estimates comes an accelerated cultural discourse on the subject, a prevailing vigilance on the part of parents and – as is often the case – a challenge to us all to separate myth from reality in an effort to effectively and comfortably address the issue.
For instance, many people who only marginally know of autism assume that autistic children necessarily function within an isolative bubble of ineffective communication, repetitive movements and social awkwardness. Indeed, there are points on the autism spectrum that may reflect this level of severity. What often gets missed is that “Spectrum” is the operative word in this particular diagnostic category.
Think about a continuum. An analogy of a number line. Points on a line going from 1 to 10, with countless intermediate points. This is how we now conceptualize autism. This is a dimensional conceptualization of the condition. We have evolved from a categorical conceptualization. Categorical thinking gave us the separate but related diagnosis of Asperger’s Disorder. With the publication of the 5th edition of the Diagnostic and Statistical Manual (DSM-V) Asperger’s has essentially been removed in favor of a more fluid – and some would argue – realistic description of symptoms. Points on a continuum. ASD, Level 1 (requires support), Level 2 (requires substantial support) and Level 3 (requires very substantial support).
Questions of prevalence, screening and diagnosis notwithstanding, the prominent issue that emerges is that of treatment. What can be done to lend the appropriate level of support to children identified as being on the spectrum? Growing evidence suggests that a small minority of persons with autism progress to the point where they no longer meet the criteria for a diagnosis of autism spectrum disorder (ASD). Various theories exist as to why this happens. They include the possibility of an initial misdiagnosis, the possibility that some children mature out of certain forms of autism and the possibility that successful treatment can, in some instances, produce outcomes that no longer meet the criteria for an autism diagnosis. We do know that significant improvement in autism symptoms is most often reported in connection with intensive early intervention—though at present, we cannot predict which children will have such responses to therapy.
The Early Start Denver Model (ESDM) is a comprehensive behavioral early intervention approach for children with autism, ages 12 to 48 months. The program applies a developmental curriculum that defines the skills to be taught at any given time and a set of teaching procedures used to deliver this content. It is not tied to a specific delivery setting, but can be delivered by therapy teams and/or parents in group programs or individual therapy sessions in either a clinic setting or the child’s home. Psychologists Sally Rogers, Ph.D., and Geraldine Dawson, Ph.D., developed the Early Start Denver Model as an early-age extension of the Denver Model, which Rogers and colleagues developed and refined. This early intervention program integrates a relationship-focused developmental model with the well-validated teaching practices of Applied Behavior Analysis (ABA).
Behavior analysis, simply put, focuses on the principles that explain how learning takes place. Positive reinforcement is one such principle. When a behavior is followed by some sort of reward, the behavior is more likely to be repeated. Through decades of research, the field of behavior analysis has developed many techniques for increasing useful behaviors and reducing those that may cause harm or interfere with learning. Applied behavior analysis (ABA) is the use of these techniques and principles to bring about meaningful and positive change in behavior. The treatment begins with an assessment by the therapist. The purpose of the assessment is to determine which skills the child already possesses and where the child has deficits. The therapist next develops an ABA program aimed at increasing the child's skills in many areas. The program will likely include goals related to the child's academic development, communication skills as well as social skills and overall interaction with the environment. After identifying the goals, a therapist creates a series of steps to help the child reach them. The ABA therapist can employ a number of different procedures to teach the child with autism a given skill. ABA training is most effective if therapy begins when children are younger than age 5.
Many children with autism have sensory problems. Some are overly sensitive to stimuli such as lights, noises, and touch. Others are not sensitive enough. There are a number of sensory therapies that have been shown to improve the sensory problems children with autism have. Although these therapies can help, there is little scientific documentation that sensory therapies are effective. The goal is to help regulate the child's reaction to external stimuli. For example, if the child is hypersensitive to being touched, the therapist will work to desensitize the child over time to tactile stimulation.
Direct parental involvement and participation is critical regardless of the specific therapeutic approach. Handing off the child to a professional to be “fixed” is not acceptable. The best first step is for parents to consult and to do research to determine the most effective approach for their child. There are no “cookie-cutter” recipes available. The individual needs of the child are paramount. A good starting point is the Autism Treatment Center of America (www.autismtreatmentcenter.org)
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