Wednesday, February 16, 2011

For Physicians: 10 Things You Can Do To Help Families With Children Affected By Autism or Developmental Delays

Dr_Som
www.pensivepediatrician.com/

This is a follow up to a previous post, Who Wins When Parents Spank? at the Pensive Pediatrician

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, family practice physicians, and society at large.


The 10 things pediatricians and family practice physicians can do to help families affected by autism or other developmental delays in their in their practices:

1. Understand the ABCs of behavior
  • A= Antecedent = What happened immediately before the behavior?
  • B= Behavior = A description of the behavior (not "he got angry")
  • C= Consequences = How did the parent or teacher respond and/or what kind of reinforcement did the child receive?
For example, when David, 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.

As it became apparent, I was inadvertently reinforcing his resistance to the car seat by making sounds that he liked -- either the "stop!" or the sighing -- or both. Autistic children are motivated by positive reinforcement, but 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 American Academy of Pediatrics (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 routine 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 ten 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, developmental delays, 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 (SLP) and occupational therapy (OT) 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 of occupational therapy (OT), physical therapy (PT) and Speech Language therapy (SLP), without determining a child's unique needs, the family's insurance, and what your patient's Special Education Local Area Plan (SELPA) offers, you are not providing a true medical home.

One thing you can do is to 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 children with developmental delays benefit as well.

Any professional who 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, Relationship Development Intervention (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 insurance reimbursement.
While I endorse ABA, it is only paid for in a handful of states through early intervention, Medicaid, private insurance, or the school district. Otherwise, you will just have to hope your patient's family has significant financial means.

Until 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 for available services, 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. Obviously, I am not seriously advocating this course, as it is not humane -- or cost effective. Legislation in various states attempts to compel 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, (published November 1, 2007; reaffirmed December 1, 2010) the AAP policy statement 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 a child with "challenging behaviors," 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 pediatricians or family practice physicians handled asthma this way. The child would arrive at the office coughing and dyspneic [short of breath]. We would administer albuterol, oxygen and/or steroids while his mother sits next to him smoking a pack of cigarettes.

7. Help your patients' parents develop meaningful familial supports 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 -- for example, when toilet training.

Here is one example: I write lots of prescriptions for diapers and incontinence undergarments for autistic children older than five, so that the parents can be compensated for the cost of these items. Many, if not most, children with autism can be toilet trained -- if their parents or caregivers have help from experienced professionals in this area. However, in my state, Medicaid pays for all the diapers you want but will not pay for any ABA or in-home behavior management.

8. Stop making parents the only "experts" on their child.
We do not diagnose a child with muscular dystrophy, brain cancer, or blindness, and then tell her parents that they are the real experts, but you will be available for consultation. We do not reassure parents of a child with these diagnoses that if things get too bad, they can go to the ER or call one of the triad: OT/PT/Speech for help. We should not use this approach for parents of children with an autism diagnosis.

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 on autism treatments?

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, YouTube has great videos of families using RDI (sample search) or ABA (sample search). Autism Speaks now has its own channel.

It is sad that no physician has ever suggested to us -- fellow physicians -- that we could use resources such as online videos 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. Advocate for better training for folks on the front line.
Who are those on the front line? Social workers, early intervention educators, caseworkers from your state's developmental and /or cognitive service provider, special education teachers, and therapists -- those are the front-line folks you will meet. All need ongoing training -- in advances in remediation, and advances in what is known about education and behavior management for people with developmental delays. 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.

Here's what can happen without adequate support:
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A version of this essay was previously published at the Pensive Pediatrician