Constipation and Toileting Training in Autism

Peggy Marcon, MD Pam Green RN(EC) MHSc Lesley Barreira, MADS, BCBA Lianne Moroz, MA, BCBA Jessica Brian, PhD

Funded by cooperative agreement UA3 MC 11054 through the U.S. Department of Health & Human Services, Health Resources & Services Administration, Maternal & Child Health Research Program

Why the study? • Toilet training can be a stressful time in any home. • Some children seem to be “more difficult” to toilet train. • Parents are often at a lost as what to do. • Healthcare providers are also often at a lost to what to do.

Funded by cooperative agreement UA3 MC 11054 through the U.S. Department of Health & Human Services, Health Resources & Services Administration, Maternal & Child Health Research Program

Published Guidance • The Medical Literature really is very deficient in actually studies to help guide “best practice”. • The Behavioural Literature is also lacking – • So – “What to do?”

Funded by cooperative agreement UA3 MC 11054 through the U.S. Department of Health & Human Services, Health Resources & Services Administration, Maternal & Child Health Research Program

How one feels!

Funded by cooperative agreement UA3 MC 11054 through the U.S. Department of Health & Human Services, Health Resources & Services Administration, Maternal & Child Health Research Program

Some facts • Current starting age for toilet training – 21 to 36 months. – 40 years ago – 18 months!

• Why the delay? – Shift in parenting styles (more liberal), convenience of disposable diapers…

• None of this addresses “Special needs”

Funded by cooperative agreement UA3 MC 11054 through the U.S. Department of Health & Human Services, Health Resources & Services Administration, Maternal & Child Health Research Program

American Academy of Pediatrics said (2003): Role of the Primary Care Physician in Toilet Training Help parents to: • Assess their child’s and their own readiness • Select the best training method for their child (non-punitive, rewards-based) • Take a consistent approach • Understand that setbacks are common • Support their child to achieve success and gain a sense of accomplishment

Funded by cooperative agreement UA3 MC 11054 through the U.S. Department of Health & Human Services, Health Resources & Services Administration, Maternal & Child Health Research Program

Toileting Issues in Special Populations • Agency for Healthcare Research and Quality (USA) (2006) – Most of the current toileting methods are indicated for healthy, typically developing children – Limited research on toilet training for children with special needs and/or behavioural difficulties

Funded by cooperative agreement UA3 MC 11054 through the U.S. Department of Health & Human Services, Health Resources & Services Administration, Maternal & Child Health Research Program

So What to Do? • We were suppose to give recommendations to healthcare providers of children with Autism Spectrum Disorder on how to toilet train – without any guidance on what to recommend! • So we set up a pilot study based on work two of our behavioural therapist were doing at Surrey Place Centre. Funded by cooperative agreement UA3 MC 11054 through the U.S. Department of Health & Human Services, Health Resources & Services Administration, Maternal & Child Health Research Program

The Idea • Create an “easy to use” and “easy to evaluate” data collection tool • Use the data to decide “the issues” • Develop a chart to match “issue” with suggestions on how to proceed with training.

Funded by cooperative agreement UA3 MC 11054 through the U.S. Department of Health & Human Services, Health Resources & Services Administration, Maternal & Child Health Research Program

Constipation and Toileting Research Project • Aims: – Pilot a standard toileting questionnaire – Structure the behavioural section of the flow chart – Help clinicians (e.g., family physicians, pediatricians, nurse practitioners) to set up a toilet training program for the individual child.

Funded by cooperative agreement UA3 MC 11054 through the U.S. Department of Health & Human Services, Health Resources & Services Administration, Maternal & Child Health Research Program

Constipation and Toilet Research Project • To be finished March 2012 (including 6 month follow up) • Projected sample of 10 participants (14 to date) • Inclusion criteria: – Children between the ages of 4 and 9 years – Currently enrolled in the ATN – Diagnosis of Autism – Positive history of constipation or other GI issues – Difficulty with toilet training

Funded by cooperative agreement UA3 MC 11054 through the U.S. Department of Health & Human Services, Health Resources & Services Administration, Maternal & Child Health Research Program

Data Diary Toileting Questionnaire • Diet (6) • Medical/Health (3) • Past Toilet Training Attempts (3) • What skills do they have for Toileting (8) • Current Voiding Patterns (16) • Current Toileting Routine (9) • “Family” make-up (2) • Other (reinforcers, upcoming events) (3)

Funded by cooperative agreement UA3 MC 11054 through the U.S. Department of Health & Human Services, Health Resources & Services Administration, Maternal & Child Health Research Program

Functional Behaviour Assessment Function “to get more of” or “to get rid of”

Attention

Tangible/ Activity

Sensory

Skill Deficit vs. Motivational Deficit

Nature of STR -fear, ritual, or non-compliance

STR=Stool Toilet Refusal Funded by cooperative agreement UA3 MC 11054 through the U.S. Department of Health & Human Services, Health Resources & Services Administration, Maternal & Child Health Research Program

Once We are Done? • Evaluate how useful the questionnaire & data collection are (Health Team and parents) • Evaluate the success of the intervention for our group of children • Field test toileting package with nonbehavioural clinicians

Funded by cooperative agreement UA3 MC 11054 through the U.S. Department of Health & Human Services, Health Resources & Services Administration, Maternal & Child Health Research Program

Hopefully at the next World CdLS we can show you the “Tool” Thank you! From: http://blog.cornerstorkbabygifts.com/wp-content/uploads/2008/09/potty-training.jpg

Funded by cooperative agreement UA3 MC 11054 through the U.S. Department of Health & Human Services, Health Resources & Services Administration, Maternal & Child Health Research Program