Incontinence can be a common problem for children with significant developmental disabilities, impacting where they can go and who needs to go with them; leaving them at risk for neglect or abuse; leading to infections and poor skin health; even affecting vocational plans or future housing. Yet toilet training is still possible for these children.
Case 1: P.T. is a 2-year-old boy who comes in for his well-child check. Mom wants to talk with you about toilet training. Grandma claims that P.T.’s mother started training at 18 months, and she is wondering why his parents haven’t started training P.T. yet. Mom says she is not exactly sure how to proceed. What advice do you offer?
You tell her that between 2 and 3 years of age is a great time to start training because starting too early or too late may coincide with problems.1,2 You discuss signs of readiness such as the ability to follow instructions, communicate the need to go, be cooperative toward training, and stay dry for 2 hours. You may discuss the child-focused-forgiving but slower-Brazelton method3 and touch on the more parent-focused-and quicker-Azrin and Foxx method.4 Either way, you reassure the mother that it will happen in due time with appropriate encouragement and support, and you advise her to call with questions.
The next patient with toilet training questions is atypical and more challenging.
Case 2: D.J. is a 5-year-old nonverbal boy with autism and intellectual disability who will be starting kindergarten in 6 months. Mom is still grieving over the diagnosis of autism and she is sad that he will be starting kindergarten in expensive larger Pull-Ups training pants. This mother reveals feeling overwhelmed with her son’s limited communication and frequent inability to sit on a toilet for more than 10 seconds. She discusses her difficulties bringing a tall young boy into a public women’s restroom and the repeated mess that the entire effort sometimes creates. Attempts at toilet training have all failed and she asks if you have any ideas. What advice do you offer?
Incontinence can be a common problem for children with significant developmental disabilities. Although typical preschoolers and kindergarteners may be mostly inclusive and accepting of urinary or fecal accidents, older elementary school-aged children are less tolerant of incontinent classmates. Incontinence may impact where these children can go and who needs to go with them. It will leave them at risk for neglect or abuse. In later years, it may lead to infections and poor skin health. After transitioning out of school, incontinence may impact vocational plans or future housing.
Although D.J. doesn’t demonstrate the usual signs of readiness, Foxx and Azrin have shown that toilet training is still a possibility for those with intellectual disabilities. Whereas signs of readiness are logical, they have little evidence to demonstrate their predictability especially for this population.5
More than 50 years ago, many children like P.T. and D.J. ended up institutionalized when families felt they could not appropriately care in their own homes for the financial, medical, or educational needs of these children. Unfortunately, before 1975 when President Gerald Ford signed the Education for All Handicapped Children Act (now called the Individual with Disabilities Education Act [IDEA]), these circumstances often left many of these children institutionalized without an appropriate educational plan to help them gain independence. Having failed to toilet train in the usual manner, these children were often left dependent on others to be changed and were left in very substandard conditions.6,7
In 1971, Foxx and Azrin approached this difficult situation with an applied behavioral analysis (ABA) standardized protocol they devised, studied, and later published.8,9 In an effort to toilet train 10 adult males with significant special needs (paralysis, paresis, intellectual disabilities, nonspeaking), they challenged the notion of lifelong incontinence and showed that many in this population were capable of learning the skill of toilet training when that skill was broken up into discrete trial steps. Attempts to use a modified protocol 40 years later with atypical kids has demonstrated success.10
This method consists of habit training, self-initiation, and operant conditioning.8,9
Habit training/operant conditioning
Foxx and Azrin started their training method with a goal of habit training-expecting patients to have a voiding routine with scheduled sitting. They started teaching habit training on study days by allowing 10 men an unlimited supply of their usually limited, but now readily available, favorite beverages, which encouraged a frequent need to urinate. They required the men to sit on the toilet for up to 15 minutes, or until voiding occurred, twice every hour to encourage the possibility of urinating while sitting. They used toilet alarms that played a celebratory song whenever any urine went into the toilet.
By use of what we now call a bed-wetting alarm, these men were made aware of any urine leakage when not on the toilet. Foxx and Azrin used operant conditioning, rewarding desired behavior (urine in toilet) with small candy bars and chocolate treats. They punished unwanted behavior (incontinence) with imposed cleaning of body, clothes, and environment while concurrently placing limits on available snacks after accidents. Graduated guidance was used to offer these men the most limited guidance to complete the cleanup task. At times that might mean the more conservative hand-over-hand direction to a task or the more liberal verbal direction to complete the task.
Within several weeks, many of these men had the awareness of the need to go-the “Aha!” moment-with scheduled sitting. For many of these adult patients, this attention and candy were huge changes, and brought about a vast improvement in the interest they received from others.
Self-initiation
The next goal was to move the men from the timed voiding schedule to the independent act of self-initiation to the toilet. They spent several hours each day drinking in the study area. However, now they were no longer kept on a voiding schedule and were encouraged to independently sit on the toilet of their own accord. Again, with use of operant conditioning, they were cheered and rewarded with candy when they did this. When incontinence occurred, they were scolded and restricted from edibles and, with graduated guidance, expected to clean themselves, their clothes, and the environment
By repeating this maneuver over several weeks, all the men were successfully daytime trained for urination. With time and limited resources, nocturnal enuresis ended and toileted stool elimination easily followed.
We learn from Foxx and Azrin that toilet training adult males with intellectual and motor disabilities is a real possibility. The researchers’ earlier publication, Toilet Training in Less Than A Day, first published in 1968, showed the possibility of a quick method with typical kids, too.
However, the use of operant conditioning with toilet training has also caused much criticism to these approaches. Some evidence does discuss the downside to operant conditioning and its relationship to toilet training for typical kids. For example, Baker showed that operant conditioning correlates with dysfunctional voiding and constipation that can lead to more accidents and other problems in typical kids.11 To this day, the American Academy of Pediatrics’ policy continues to recommend the slower, child-focused Brazelton guideline for typical kids without operant conditioning.2 However, little advice is offered by the academy regarding the child with special healthcare needs such as intellectual disabilities and autism.
Autism Speaks (www.autismspeaks.org), the well-known autism advocacy organization, encourages families to practice toilet training with 6 bathroom visits a day without operant conditioning.
Next month, Contemporary Pediatrics will present part 2 of Dr Wenger’s article in which she offers a practical course of action steps for providers to help families of children with intellectual disabilities and ASD achieve continence.
REFERENCES
1. Barone JG, Jasutkar N, Schneider D. Later toilet training is associated with urge incontinence in children. J Pediatr Urol. 2009;5(6):458-461.
2. Joinson C, Heron J, Von Gontard A, Butler U, Emond A, Golding J. A prospective study of age at initiation of toilet training and subsequent daytime bladder control in school-age children. J Dev Behav Pediatr. 2009;30(5):385-393.
3. Brazelton, TB. A child-oriented approach to toilet training. Pediatrics. 1962;29:121-128.
4. Azrin NH, Foxx RM. Toilet Training in Less Than a Day. New York: Pocket Books; 1974.
5. Kaerts N, Van Hal G, Vermandel A, Wyndaele JJ. Readiness signs used to define the proper moment to start toilet training: a review of the literature. Neurourol Urodyn. 2012;31(4):437-440.
6. Morton E. Belchertown State School, a horrific home for the “feeble-minded.” Available at: http://www.slate.com/blogs/atlas_obscura/2014/07/07/abandoned_belchertown_state_school_for_the_feeble_minded_in_massachusetts.html. Published July 7, 2014. Accessed March 23, 2017.
7. d’A Belin R. Benchmarks XXIV: The Life and Legacy of Joseph L. Tauro. Boston, MA: Massachusetts Continuing Legal Education Inc; 2011.
8. Azrin NH, Foxx RM. A rapid method of toilet training the institutionalized retarded. J Appl Behav Anal. 1971;4(2):89-99.
9. Foxx R, Azrin N. Toilet Training the Retarded: A Rapid Program for Day and Nighttime Independent Toileting. Champaign, IL: Research Press; 1973.
10. Kroeger KA, Sorenson-Burnworth R. Toilet training individuals with autism and other developmental disabilities: critical review. Res Autism Spec Disord. 2009;3(3):609-618.
11. Bakker E, Van Gool JD, Van Sprundel M, Van Der Auwera C, Wyndaele JJ. Results of a questionnaire evaluating the effects of different methods of toilet training on achieving bladder control. BJU Int. 2002;90(4):456-461.
Dr Wenger is assistant professor of Pediatrics, Comprehensive Care Program, Boston University School of Medicine, Boston Medical Center, Massachusetts. She has nothing to disclose in regard to affiliations with or financial interests in any organizations that may have an interest in any part of this article.
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