There are lots of reasons you may be eager to refer children with autism spectrum disorder (ASD) to specialty agencies. You want the fastest possible entry for the child into intervention and the families into a support system. But your role as a primary care provider really needs to continue for children with ASD to help families deal with the day-to-day behavior, as well as the general health care, of their children.
“Wait!” you say, “I do not have the special knowledge to help with the behavior of children with autism! There is much you can and should do, however, as the specialist(s) may not provide such guidance, entry into behavioral services may take months, and behavior issues may feel urgent to families.
You already know ASD and its core features – lack of communication skills and repetitive or restrictive interests or activities. These gaps in skills tend to generate behavior issues for these children, and additional ASD features, such as hyper- or hyposensitivity to stimuli, intellectual disabilities, motor coordination weaknesses, ADHD, and anxiety, often compound their difficulties. Just lean on your knowledge of antecedents, behaviors, consequences, and especially gaps in skills (the As, Bs, Cs, and Gs) to sort out and address problem behaviors.
So pick an example of a behavior that is concerning to the family. One problem might be lack of cooperation with activities of daily living such as eating. In this case, the A is being asked to stop playing and sit at the table; the B may be refusing to eat what is served or even to sit very long, ending in a tantrum that disrupts the family meal; and the C could be the child being sent from the table to play on their iPad. But what is the G?
Lack of social communication skills, restrictive interests, hypersensitivity, lack of coordination, and ADHD all may be playing a role. Lack of communication skills makes the social aspect of meals uninteresting. Giving verbal reasons for joining the family may not be effective. Hypersensitivity often is associated with extremes of food selectivity. Lack of fine motor coordination makes eating soup a challenge. And ADHD makes sitting for a long time difficult!
Come up with a behavior plan along with the family that takes all of these gaps into account. Making mealtime more interesting to the child with limited communication may include having him help choose and prepare the food, celebrating that achievement with praise at the meal, communicating during the meal in a way that he does understand, or allowing toys of interest (never media) at the table. To address food selectivity, at least one food acceptable to the child should be served but other foods put on the plate without discussion for gradual desensitization. Hypersensitivity also may make chaotic meals, siblings, unbearable to the child. Instead, the TV needs to be off, arguments need to be avoided, and rambunctious younger children may need to eat separately, or the child with ASD should be permitted to use earplugs. ADHD symptoms in children with ASD often can be improved with medication, but shorter attendance at the table should be expected.
But what about that tantrum? Tantrums that are reinforced by allowing the child to leave and play on the iPad easily can turn into a chronic escape mechanism. Instead, parents need to watch for increasing restlessness, and allow the child to signal “all done” and be “excused” before any tantrum begins. Use of the iPad (a reward) should not be allowed until the family meal is over for everyone. Such accommodations are best decided on by all caregivers in advance, ideally also involving the higher-functioning child. A caregiver who persists in thinking that the child “should” be able to behave may be in denial or grief, and deserves counseling on ASD.
But he is so rigid, the parents say! The tendency of children with ASD to like sameness can be an asset to easing behavior. The key is to design and stick to routines as much as possible, 7 days per week. If the meal is at the same time each day, in the same seat, with the same plate, with no iPad, and the child is allowed to leave only after requesting to, the entire sequence is likely to be smoother. While flexibility does not come easily, it is acquired from the natural variability in family life, but only gradually and over time.
Creating and rehearsing “social stories” is an evidence-based way to help children with ASD have acceptable behaviors. Books, storyboards, and visual schedulers can be purchased to help. But even taking photos or a video of the components of a task and posting this online (private YouTube channel) or on the refrigerator, to review before, during, and/or after the activity, builds an internal image for the child. Children with ASD often watch the same YouTube videos over and over again, and even memorize and use chunks of the speech or songs at other times. Families can capitalize on this kind of repetition by using routines and songs to improve skills.
What to do when she only cares about her iPad? It is sometimes difficult to identify reinforcers to use to strengthen desired behaviors in a child with ASD. A smile or a hug or even candy may not be valued. Help parents think about an object, song, or touch the child tends to like. Media are a strong reinforcer, but need to be used sparingly, in specific situations, and kept under parental control, or else removing them can become a major source of upsets.
When a child with ASD gets upset or even violent, the behavior may be interpreted as defiance; it may scare or upset the whole family, and is not conducive to problem solving. Siblings may start screaming or begging for the parents to stop the behavior. While this creates a crisis, you can advise parents to first ensure that everyone is safe, take deep breaths, and then think about which gap is being stressed. A subtle change from what the child expected – new furniture, a guest at the table, a day off from school, or being interrupted mid video – can cause panic, especially for anxious children. Children with ASD also may act up when uncomfortable from a headache, tooth pain, constipation, hunger, or lack of sleep, but often are unable to vocalize the reason, even if they are verbal. Having parents make a few notes about the As, Bs, Cs, and Gs of each event (the essence of a functional behavioral assessment) to review with the child, each other, the teacher, or you is key to understanding the child with ASD and successfully shifting his behavior.
Dr. Howard’s contribution to this publication is as a paid expert to Frontline Medical
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Editorials for Clinical Practice
CHADIS Co-Director and President, Dr. Barbara Howard is a regular contributor to the Behavioral Consult column of Pediatric News and an Assistant Professor of Pediatrics at The Johns Hopkins University School of Medicine.
Dr. Howard is a developmental-behavioral pediatrician trained by Dr. T. Berry Brazelton at Harvard University. She is a national speaker on child behavior problems and is a past president of the Society for Developmental and Behavioral Pediatrics. She was a contributing author for Bright Futures™, Diagnostic and Statistical Manual for Primary Care (DSM-PC) and Bright Futures in Practice: Mental Health and has served on national committees of the American Academy of Pediatrics.