Here are ways doctors can help autistic or delayed children behave and learn.
I certainly do not mean to trivialize the behavior issues that erupt as typical children develop, but the problems of atypical kids are more difficult and less likely to be fully addressed by general pediatricians and society at large.
1. Understand the ABCs of behavior. Antecedent = What happened immediately before the behavior? Behavior = A description of the behavior (not “he got angry”). Consequences = How did the parent or teacher respond and/or what kind of reinforcement did the child receive.
For example, when my autistic son was three, every time I fastened or unfastened his car seat (antecedent), he screamed and/or pulled my hair (behavior). I would usually say “stop” or sigh loudly (consequence) and try to get him in the seat as fast as possible. I tried distracting him with good toys or singing but nothing worked. I even cut my hair. He responded the same way regardless of the car or the type of seat.
David began seeing a certified behavior analyst for applied behavior analysis, ABA (click for video) to help with his language. She calmly watched as I struggled to get him in the car after a therapy session. She suggested I ignore the behavior. She said, “Be a robot. Say nothing. No anxiety or anger. No extra singing or extra toys to attempt distraction.” It was really hard. After about 3 weeks, the months and months of hair pulling stopped. I was inadvertently reinforcing his resistance to the car seat by making sounds that he liked. Autistic children are motivated by positive reinforcement, the trick is identifying the powerful reinforcers as these are often different than the social reinforcers used to discipline most children. Discipline issues are never easy especially with children who have limited communication skills.
According to the AAP policy statement on discipline, parents are more likely to use aversive techniques like spanking when they are angry or irritable, depressed, fatigued, or stressed. Although I cannot speak for all the caregivers of developmentally delayed children, one of these adjectives describes me all the time. The policy statement also mentions that spanking can be a positive reinforcer for children much like my firm “stop it” or sighing were for David. The policy does not address developmentally delayed or autistic children. The AAP policy statement on the maltreatment of children with disabilities discusses the issue, but I hope most pediatricians address behavior management techniques before there is concern about maltreatment.
2. Ask and listen. Parents have low expectations. Many families assume that check ups for a child with autism are for vaccinations and other non-mental or behavioral health issues. Many families have seen or are actively seeing a developmental pediatrician or psychiatrist. Ask if these professionals are accessible and helpful when it comes to the very practical issue of daily discipline. If concerns are not being addressed, send your patients elsewhere. Sometimes just talking helps families find focus and prioritize what they juggle everyday.
3. Know where to send your patients. My husband and I are both general pediatricians. Most of what we know about the evolution of disordered and/or delayed development we learned from practical experience with our son. Granted we trained 10 years ago, but residents still are not learning what they need to know to help special needs kids and their families.
Do you know the specific schools or programs in your community that excel for children with cerebral palsy or autism? Which therapies do you suggest and for what reason?
Not all therapists are equally skilled which is especially true if the child is seeing a therapist via a state early intervention program. When we lived in Oregon, we received excellent speech and occupational therapy from early intervention. Then we moved to Ohio where we did not “qualify” for therapies because we were privately insured. Music therapy and aquatics although not paid for by insurers, are ideal for certain kids. If you reflexively send special needs patients to the triad OT/PT/Speech without determining a child’s unique needs, the family’s insurance and what your local area offers, you are not providing a true medical home. Enlist the help of parents of special needs children in your practice. Ask if they would mind if a parent in need contacted them. We wish desperately that a primary care doctor or specialist had done that for us especially when we first relocated.
4. Send your patients to a certified behavior analyst with experience using ABA. Although many of the studies supporting ABA were done with autistic children, non-autistic delayed children benefit as well. Any professional that tells you he uses an “eclectic” approach is not really using any solid approach. While there are some other developmental models for teaching children with autism or language delays, Floortime, RDI, Hanen, if a child has significant behavior problems, ABA is your best bet. ABA is the most empirically proven reproducible method to improve functional behavior, social, and academic skills in a variety of settings for a range of diagnoses.
5. Advocate for reimbursement. Hope your patient is wealthy or lives in one of a handful of states where ABA is paid for either by early intervention, Medicaid, private insurance or the school district. Unless pediatricians, psychologists, certified behavior analysts and/or psychiatrists get paid for counseling in detail about behavior modification families will continue to experience long waiting lists and limited options. General pediatricians in private practice cannot spend 45 minutes troubleshooting why an autistic child rips his mother’s hair out when placed in a car seat. A dedicated pediatrician might do phone follow up over a few days and help the mom keep ABC (antecedent, behavior, consequence) data, but she will not get paid.
If you want private insurance to help, wait until the child pulls out everybody’s hair and becomes a danger to himself or others. Then he can go to the ER while he waits for a bed at a an inpatient psychiatric facility. Not exactly cost effective or humane. Legislation in various states attempts to force insurers to pay for autism therapies, but loopholes almost universally allow insurers to weasel out of reimbursing for ABA.
6. Say no to drugs as a first line approach. Say this three times out loud: “No medication should be started without an effective behavior plan. No medication should be started without an effective behavior plan. No medication should be started without an effective behavior plan.” Although the AAP policy statement on the management of children with autism advocates for this approach, it does not mention discipline strategies in any detail nor does it broach the subject of child maltreatment. It spends one paragraph on the importance of a behavior plan for an aggressive child and then three and half pages on drugs most of which are not well studied. There is a one page table that suggests specific classes of drugs for specific problems. Why isn’t there a comparable table illustrating behavioral solutions or approaches to common problem behaviors? The policy statement assumes that you will be able to easily send the child to a specialist for a functional behavior analysis while you get ready to write the prescription.
Imagine if we handled asthma this way. The child would arrive at the office coughing and dyspneic. We would administer albuterol, oxygen and/or steroids while his mother sits next to him smoking a pack of cigarettes.
7. Meaningful parental support before crisis. Of course an effective behavior plan requires not only an experienced professional for design but a motivated caretaker to implement. Personally, I can think of a handful of occasions when I would have benefited from a therapist in my home for intense short periods i.e. toilet training. I write lots of prescriptions for pull ups and diapers for autistic children older than five. They can be trained with help. In my state, Medicaid pays for all the diapers you want but won’t pay for any ABA or in home behavior management.
8. Stop making parents the only “experts” on their child. Diagnose a child with muscular dystrophy, brain cancer, or blindness, then tell her parents that they are the real experts, but you will be available for consultation. Reassure them that if things get too bad, they can go to the ER or call one of the triad: OT/PT/Speech for help. Encourage them to join a support group.
How can we go from institutionalizing children with autism and blaming the disorder on their parents just 40 years ago to making parents the experts. I like the idea of bridging this gap by “hospitalizing” the child and bringing the behaviorist to the house. I dream big. In the meantime,You Tube has great videos of families using RDI or ABA and Autism Speaks now has its own channel, but no doctor ever suggested this as a way for us to learn about therapies. Describing behavior therapies is like writing an essay about how to Salsa. Encourage families to find a way to observe it in action.
9. Better training for folks on the front line. Social workers, early intervention educators, caseworkers from MRDD, special education teachers and therapists all need more training. With social media and telemedicine there is no reason that individuals well versed in behavior management cannot help children even in the most remote areas.
I know a marvelous occupational therapist who worked full time with autistic children. She cut back her hours because of fatigue. She wants so much to help train other people, but there is no way for her to make a living that way. Sometimes schools, counties, insurance companies and large free standing children’s hospitals do not want to pay for consultation with a behavior specialist or allow their employees to take time away from client duties to get better trained. In the big picture, it would not only save money it would save lives.
10. Stop corporal punishment in schools and in homes. Human Rights Watch reported that children with disabilities including those with autism were more likely to endure corporal punishment in schools than their typical peers. Nobody would ever know if I hit my son on a regular basis. Although he is verbal, he would never be able to articulate abuse to anyone. There are limited studies on what parents do in the home for discipline. Most parents understand that their children are fragile and different. However, they lead incredibly stressful lives with very limited respite options. They need techniques to combat aggressive behavior effectively and safely.
“dr_som” is a pediatrician who blogs at Pensive Pediatrician.
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