Autism spectrum disorder (ASD) is a family of neurodevelopmental disorders made up of autism, Asperger’s syndrome, and pervasive developmental disorder not otherwise specified. While the pathophysiology behind these disorders remains largely unknown, each shares a specific constellation of symptoms including impaired communication, diminished social skills, and unusual behaviors or interests.
The number of children with ASD is on the rise. In four years, the prevalence has gone from 6 to 9.4 cases per 1,000 individuals (Schieve LA et al, Matern Child Health J 2012; S151–157). To be fair, part of this is a function of changed definitions and looking at the entire autism spectrum rather than just autism itself. Using the new criteria, we have approximately 673,000 people in the United States suffering with these disorders (Kogan MD et al, Pediatrics 2009;124(5):1395–1403).
The impact of ASD is significant, requiring considerable financial resources and time to ensure maximum rehabilitation. In spite of all that we’re doing now, more than half of those suffering with ASD go on to have poor or very poor outcomes as adults (Howlin P, J Child Psychol Psychiatry 2004;45(2):212–229). This leads us to ask what we can do better. As physicians, we may (or may not) find medication recommendations easy to make, but many of us feel inadequate in our ability to meet the nonpharmacologic demands of ASD.
Effectively Screening for ASD
Like many illnesses, treatment starts with early screening, which ideally begins at home through parental observation. As we advocate for our patients, we can increase parents’ awareness of the signs and symptoms of ASD and point them toward resources such as the Autism Speaks website, which provides an online screening tool parents may find helpful (http://bit.ly/PZopBV). The CDC recommends primary care physicians formally screen children for ASD at 18- and 24-month checkups. However, research shows that 62% of clinicians don’t screen because they don’t understand the screening tools (Dosreis S et al, J Dev Behav Pediatr 2006;27(2 Suppl):S88–94).
To help combat this, the CDC website provides sample screening exams and links to both public and proprietary diagnostic tools with tips not only on how to complete these, but also how to work them into scheduled exam times (http://1.usa.gov/aeO0nX). There is also a fairly comprehensive list of screening tools for children up to age six available from the American Academy of Pediatrics at http://bit.ly/12afM9N.
However, few child psychiatrists see children early enough to take advantage of these instruments. Instead, we get the difficult cases that have not been diagnosed previously or have not presented clinically until latency age or beyond. For these, the best bets are the Autism Diagnostic Interview-Revised (ADI-R) and the Autism Diagnostic Observation Scale (ADOS), both of which have sensitivity and specificity in the 75%–80% range or higher when used together (Rotatori AF et al. Autism and Developmental Disabilities: Current Practices and Issues (Advances in Special Education). Bingley, UK: JAI Press;2008).
The ADOS and ADI-R are neither fast nor simple to learn, and require specialized training that presents a significant barrier for most practitioners. The ADOS requires a two day training workshop or video training (www.wpspublish.com) followed by enough practice evaluations to reach competency, generally at least eight. The ADI-R involves an 18 hour video-based training available through WPS (www.wpspublish.com), as well as in-person trainings sponsored by various educational and research organizations. However, once learned, they allow the provider to diagnose with confidence.
On the other hand, the DSM criteria are also fairly good for diagnosis and are both fast and easy to learn. There has been found to be good agreement between the ADOS and clinical judgment (Rotatori op cit).
Good diagnosis is more than just a DSM checklist. A good clinician may incorporate some bedside testing in the mix. To this end, recall that the three general categories of impairment in autism are social understanding, symbolic play, and social communication. There are a few concrete things you can do in your office to help determine if these three things are in fact impaired, which you can add to a focused history and observation.
To assess social understanding, the Sally/Anne test makes for a nice, short, “bedside” test. In it, you set up a scenario where two dolls, Sally and Anne, are playing together. Each has a box or basket. Anne needs to leave for a bit, and before she goes, she puts a specific toy in her basket. While she is gone, Sally moves the toy to her own basket. Then Anne comes back. You ask the child, “Where does Anne look for the toy?” “Where is the toy now?” “Where was the toy before?” Children on the autism spectrum think that Anne will look in the new location, Sally’s basket, because of their difficulty understanding others’ perspectives—they can only imagine Anne looking where they know the toy is located, not where she would believe it to be. (Details of the research behind this, known as the “theory of mind,” can be found at Baron-Cohen S et al, Cognition 1985;21(1):37–46.)
To test symbolic or pretend play, the trick is merely to get the child to substitute one thing for a completely unrelated thing. For example, can a block be used as a train in play? Can you play tea party and make a baby bottle into a salt shaker?
Assessing social communication is the hardest task, but a test of prosody is sometimes helpful. Try this: Hide your face from the child, then make a neutral statement such as, “I’m going to the movies” using a variety of emotional tones. Ask the child to identify which emotion was which. Normal kids get this right most, but not all, of the time, whereas kids with ASD often do not.
Engaging Children in Therapy
Identifying children with ASD is essential, but it’s only the beginning. Engaging these children in therapy can start the process of improving development and social skills, raising cognitive ability, and dampening detrimental behaviors. There are many types of therapy programs and each has variable levels of evidence. Behavioral programs, such as the Lovaas method, target multiple deficits, and many studies show significant symptom improvement (Howlin P, Am J Intellect Dev Disabil 2009;114(1):23–41).
On the other hand, environmental programs such as the Training and Education of Autistic and Related Communication Handicapped Children (TEACCH) focus less on changing communication or social skills and more on embracing each child’s specific characteristics. There are also programs created specifically for ASD children with limited language abilities. (For a thorough review of many programs, see Maglione MA et al, Pediatrics 2012;130(Suppl 2):S169–78.) While it may seem hard to know which method is best for your patients and their families, helping identify a program individualized for each patient’s needs may be the best form of advocacy.
Involving Home and School
While therapy can start in our office, most of the work is done in the home and school settings. For children with ASD, school becomes the place that encourages change or allows retreat into stereotyped behaviors. Research suggests that effective school programs begin with the principal and ultimately involve the environment, teachers, and classmates.
Why the principal? Horrocks et al found that the principal’s belief in the ability of autistic students to integrate led to a higher rate of successful inclusion (Horrocks JL et al, J Autism Devel Dis 2008;38(8):1462–1473). Even simple changes like sound-absorbing walls and halogen lighting lead to improvements in mood, comfort, and performance in autistic children (Kinnealey M et al, Am J Occup Ther 2012;66(5):511–519).
Creating the ideal environment isn’t just a physical process; it also involves teachers setting the stage for success. Intervention techniques focusing too much on the child with ASD run the risk of separating children into two distinct groups, whereas classwide intervention techniques can help meet the needs of all students with minimal disruption. Ultimately, teachers not only help ASD students integrate, but also provide an example for other classmates to learn how to respond appropriately to the autistic child (Weiss MJ & Harris SL, Behav Modif 2001;25(5):785–802). Select peers can go beyond just basic acceptance and volunteer for activities like peer play during recess to help improve social skills (Harper CB et al, J Autism Dev Disord 2008;38(5):815–826). Lastly, encouraging parents to stay involved in school leads to higher satisfaction with school efforts (Zablotsky B et al, Am J Intellect Dev Disabil 2012;117(4):316–330).