Wednesday, August 11, 2004

Educating Your Pediatrician Part I: Developmental Screening

In the opening of the new book Not Even Wrong: Adventures in Autism, Paul Collins recounts how a regular pediatric checkup for his 2 1/2 year old son ends with a diagnosis of ASD. Elapsed time, less than 20 minutes. For many parents of children on the autism spectrum, that chapter is heartbreaking for what happens because the pediatrician does everything right -- she notices the gaps in Morgan's social behaviors and is not reassured by Collins' insistence that the boy does speak -- she asks about how the boy does and does not use language. Why is this exemplary professional's conduct heartbreaking? Because the typical experience of spectrum parents is of multiple checkups in which various parent concerns about verbal, social and sensory behaviors were raised with the clinician, only to be dismissed as overconcern or anxiety.

Plainly, when pediatricians are knowledgeable about their responsibility and capacity to provide preliminary developmental screening and refer for multidisciplinary evaluations when screening criteria are met, they can do just that. When they fail to do so, precious months of opportunity for effective intervention are lost.

And pediatricians don't even have to have gotten religion about the possible environmental, consumer, and medical sources of exposures that many believe contribute to the rise in autism. A new campaign from the CDC and the American Academy of Pediatrics, Autism A.L.A.R.M. promotes the use of a simple screening tool and referral for further evaluation for children who do not pass the screen. Even the conventional medical professionals are promoting early detection -- there is no controversy here.

Those among us who suspect a role for mercury (from all sources or vaccines in particular) will find it ironic that the Autism A.L.A.R.M. recommends lead exposure screening rather than mercury. But I'm even OK with that -- lead is a bad thing to have in your system, and spectrum kids often have behaviors that place them at greater risk for exposure.

First Signs has materials about the M-CHAT (Modified Checklist for Autism in Toddlers) which is a well-tested, easy to use measure for general practice pediatricians to use during a regular office visit. They have a conventionally respectable advisory board, professional looking training materials, and the truly key materials -- the MCHAT instrument and scoring instructions -- can be downloaded for free.

Docs for Tots has materials for doctors on an array of child welfare advocacy issues, including Part C Early Intervention Services.

So, if you haven't abandoned entirely the pediatric practice where they put off your concerns, or if you are taking your newborn sibling of a spectrum child to the same practice or a new one, take along some of this stuff.

And if you do want to refer your child aged 0 to 3 to Early Intervention in New York City, take along the referral form. You don't need the doctor to send it in, but the form does ask for some information that they will have if you don't.

Thursday, August 05, 2004

August Meeting: Positive Behavior Intervention and Support

Many of us have seen that our children learn best, and some of them exclusively, through a method called Applied Behavior Analysis. Positive Behavior Support takes some of the key principles of ABA and translates them to tactics to managing problem behavior and encouraging positive behaviors throughout the day at home and in the community.

At my house, this has been no miracle, but a framework for replacing my naturally occuring "frustration parenting" tactics that don't work with behavioral ones that eventually do. One rule of thumb under PBIS is to deliver 5 positive statements (good sitting, nice quiet voice, etc.) for every correction. I rarely accomplish that ratio, and have yet to observe anybody who consistently does, but I think it is a useful target to keep in mind.

Research and training programs on Positive Behavior Intervention and Supports are supported by the federal Dept. of Education's Office of Special Education Programs, and PBIS professional training facilities throughout New York State, including one for New York City are funded by VESID (new grantees under the expanded program will be announced soon, the request for proposals for the training centers closed in early July). This is good news, because many of us have observed teachers (even in some ABA programs) using the same frustration tactics, like yelling, that never work with our kids.

The University of South Florida's Center for Autism & Related Disorders has a very nice overview handout (pdf) on PBIS that we used for our discussion.

We also looked at materials from the Rehabilitation Research & Training Center for Positive Behavioral Support, one of several OSEP funded programs, to discuss a range of PBS "practices", including: Proactive Support Strategies, Teaching Replacement Skills, Positive Consequence Strategies, and the Competing Behavior Model. We found the Competing Behavior Model a little too complicated, but many gave examples of the importance of teaching more appropriate or adaptive replacement skills, of preferentially rewarding positive behaviors, and anticipating especially challenging transitions and providing extra support to get over those bumpy spots.

And, we had two new faces at this month's meeting. Welcome Valerie and Maria!