Incontinence and Autism - A Treatment Guide

Incontinence and Autism
Incontinence and Autism

Incontinence is a condition that affects over 35 million Americans of all ages.  Dealing with incontinence can be difficult at any age, but helping a child with a disability, like autism, learn to manage incontinence can be especially challenging. 

As a child, learning to use the bathroom is a normal part of development. And even in children who don’t have a physical, mental or emotional disability, the rate at which they develop this skill varies greatly.  However, for some children with autism, other factors can play a part in how they learn to use the toilet.  Autism is a spectrum disorder brought on by a dysfunction of the central nervous system. It is usually diagnosed in the first three years of life. Children with autism experience impairment of common social skills (making eye contact, interacting with other people or reading social cues), communication difficulties (delayed language development or complete lack of speech), and behavioral challenges (sterotyped and repetitive body movements, extreme attachment to routines, unusually intense or focused interests, and sensory sensitivities to environments including sounds, light, smells and textures.

When looking at these characteristics of autism, it’s easy to understand how some children with autism may have challenges when potty training or learning to remain continent.

Using The 5 Ps.

 Incontinence may come in many forms, but there are some common ways to approach the situation. We call them ‘The 5 Ps,’ and they can help make treatment more tolerable for caregivers and contribute to a real opportunity for improvement:

Patience  

We all know that patience is a virtue, but when it comes to incontinence, it’s often a virtue that’s hard to find. Try not to place blame for setbacks. Instead, provide positive encouragement and do your best to maintain a good sense of humor – it’ll pay off in so many ways.

Persistence

Progress may be slow, but don’t give up. Having a positive outlook and setting sensible goals can reduce frustration for everyone.

Planning  

Incontinence is all about surprises, and they’re usually not pleasant ones! Take the time to schedule activities – even simple ones that you do around the house – and make sure to stick to that schedule. Communications planning is just as important – make sure that teachers, caregivers and anyone else who shares responsibility for the child knows what they need to know about the child’s situation and is able to take appropriate action if needed.

Practice

You never know what will work until you’ve tried it – and in most cases, that means trying and trying again. Test out different treatments, ask healthcare professionals for recommendations and see for yourself if there are certain products or programs that work for you.

Progress Is Possible

It may not always feel like you’re getting somewhere, but there are thousands and thousands of families who can tell you firsthand that the effort you make today really can turn into results down the road. It may not always be realistic to expect a cure, but there are things you can do – tactics, treatments and products – that can make your loved one much more comfortable and your life much easier.

It’s important to note that many children with autism have no problems with incontinence, and for those that do the severity of their condition can vary greatly. In addition, many children continue to develop over time and can improve their condition with the proper help and instruction from a caregiver. 

For more help on addressing incontinence in children with disabilities, download our brochure, Incontinence Support For Children With Disabilities.

Toilet Training Children with Autism

Toilet Training Children With Autism

Toilet training is a pivotal skill for a person with autism because mastering the skill can significantly increase a person’s independence in his or her home and community. It is also one of those skills that parents of children on the autism spectrum struggle with.

The good news for parents is that it becomes easier once you realize that you teach the skill just like any other skill -- through behavioral intervention techniques.

Prerequisite Skills

But before you can get started, there are prerequisite skills a child needs. Do not go strictly by chronological age and do not “wait for the child to be ready.” Your child is ready to begin toilet training once the following prerequisites are met. First, the child needs to be able to sit on a toilet for about three minutes. Second, their bladder should be able to hold urine for at least one hour. Third, serious problem behaviors should be at a relatively low level. Last, toilet training will be easier if the child has already mastered some basic self help skills such as pulling up their own underwear.

Urination Training

Initial urination training consists of four major components. Each component has its own purpose and is a necessary part of the treatment package.

You will be bringing the child to the toilet on a set schedule. Schedules teach the basic routine and behaviors associated with being toilet trained. I usually begin with a 30-minute schedule. Schedules more intense than 30 minutes will not allow for periodic accidents, which are also a necessary part of the training.

There must be positive reinforcement for success on the toilet. Reserve one highly potent reinforcer, just for the toilet training intervention. Each time the child appropriately urinates on the toilet, on their schedule, give them access to the reinforcer. This strategy increases the child’s motivation to have his urinations on the toilet.

Introduce a request. Use whatever form of communication is easiest for your child. Forms of communication can include a verbal word, a picture exchange, a manual sign, etc. Prior to bringing your child to the toilet each half hour, prompt them to make the request and then respond with a naturalistic phrase such as “You have to go to the bathroom? Okay, let’s go.” This request component will allow for future independence.

Without an accident correction component, your toilet training plan will not be effective. Whereas the schedule component teaches the routine of toilet training, correcting accidents teaches the child when they should be requesting to use the bathroom. You have two choices. Some plans suggest punishment-based procedures. Other plans use a prompting procedure in which the therapist uses a quick verbal statement to slightly startle the child thereby temporarily interrupting the urine stream. The child is then quickly prompted to the toilet where they are encouraged to finish urinating. Any urination in the toilet is then followed by a reinforcer. Typically, this is the procedure that I use for accident correction because it turns the accident into an effective teaching trial.

From the first day that the treatment package is implemented, data is collected on the frequency of appropriate responses, frequency of accidents, and percentage of urination on the 30-minute schedule. Treatment decisions and modifications should be made based on a daily review of the data. Keep in mind that toilet training is an intensive procedure that usually requires the dedication of a trainer for a number of hours each day. It is also helpful to conduct the training directly in the bathroom with the child wearing limited clothing.

Bowel Training

Often, bowel training is completed along with urination training. Sometimes, however, the child becomes urine trained, but continues to have bowel movements in a pull-up or other inappropriate locations. In this case, you first need to conduct an assessment of why the child is not bowel trained and then develop a plan of action accordingly.

There may be several reasons why a child is not bowel trained, the main reasons being medical issues, noncompliance, skill deficits, adherence to a ritual or routine, fear of eliminating in the toilet, and using bowel “accidents” to serve some other function (i.e., to escape demands, to gain attention from others, etc.). Whether or not you need a toilet training plan, behavior plan, or medical intervention will depend on the reason why the child is not yet trained, so an assessment period of at least two to four weeks must precede any training plan. During this time, data and information are collected and analyzed to determine the function of the problem. Obviously, if the cause is determined to be medical, seek the recommendations of an appropriate physician.

If the cause is determined to be a skill deficit, initiate a training package consisting of prompted toilet sits (limited to the most likely times of day when your child needs to have a bowel movement), positive reinforcement for success, visual cues to teach the child what they should be doing on the toilet, and once again either prompting to the toilet or punishment for accidents.

With a ritualistic behavior or fear of eliminating, try a gradual desensitization plan where you introduce appropriate toileting in small steps, offering reinforcers for success along the way. For noncompliance, the first step is often increasing the potency of the reinforcer being offered for success and initiating a punishment-based component for accidents. If that does not work, you can try a procedure whereby suppositories and enemas are used as prompts. For this procedure, always seek the advice and guidance of a medical professional.

If the bowel “accidents” are serving some other function, you do not need a toilet training intervention, but rather a more traditional behavior plan such as that which would target escape-maintained, attention-maintained, or access-maintained behaviors. Seek the advice and guidance of a behavior analyst in these circumstances.

Whichever plan you choose for bowel training, you must watch closely for any signs of constipation. Long-term constipation will not only result in a medical issue that will need to be corrected, but will undermine your treatment plan because the eventual bowel movement is likely to be painful, thereby punishing any compliance with going on the toilet. It is suggested that if the child does not have a bowel movement for three days past his or her typical schedule that the bowel training plan be temporarily placed on hold until bowel movements become regular. Then, it is time to start again, making modifications to prevent future episodes of constipation.

Keep in mind that with good behavioral intervention techniques, a commitment on the part of the trainers, good data collection and analysis, consistency, and some advice from professionals if needed, toilet training can be mastered relatively easily and rapidly.