Like typical children, children with intellectual disabilities or autism will toilet train at different rates and with different strategies. For some families, this can be a frustrating and depressing time. Discussing the use of positive rewards and avoiding punishment will help these parents slowly make progress. Here is a detailed program to help patients achieve continence.
Like typical children, children with intellectual disabilities or autism will toilet train at different rates and with different strategies. For some families, this can be a frustrating and depressing time. Discussing the use of positive rewards and avoiding punishment will help these parents slowly make progress. Here is a detailed program to help patients like D.J. achieve continence.
STEP 1. COMMUNITY SUPPORT
First, offer compassion for all of D.J.’s parents’ efforts at trying. Reassure them that you know this is challenging and offer them the space to vent their sadness and frustration. Remind them that you can help them work on this goal.
Confirm that the parents have a covered prescription for Pull-ups or diapers with D.J.’s Medicaid coverage. They will need these while he works on this goal. Many families may struggle financially with larger and more expensive Pull-ups or diapers. (In my state, Medicaid will cover generic Pull-ups if I submit 2 diagnoses: autism, and urinary incontinence without sensory awareness. See "ICD-10 codes for urinary incontinence," for more information.)
Assess D.J. for constipation and treat that appropriately. Children with constipation are prone to difficulty with toilet training, and children with autism may have higher rates of constipation.1,2 A recently published guideline recommends the use of MiraLAX or lactulose for constipation in children.3 (See “MiraLAX for children? What NASPGHAN guidelines recommend”) These 2 medications can be expected to take more than 24 hours to have an effect. (I often prefer senna or milk of magnesia because these are documented to work more quickly [up to 6 hours after administration] and can help a busy family plan for a potential mess.)
These parents may need community-level support to train their child. Ask them what in-home support they have. Is D.J. getting applied behavioral analysis (ABA) or behavioral therapy in the home that can offer help? Can his daycare, preschool, or school help?
Encourage the parents to advocate for individualized education program (IEP) goals in regard to D.J.’s toilet training. His IEP might state:
· D.J. will be taken to the bathroom every 30 to 60 minutes and will sit for at least 1 to 2 minutes while shown a timer. When he achieves urinating in the toilet and his underpants or Pullups are dry between scheduled voiding times, the time between voids can be slowly lengthened to every 2 hours.
· Progress will be documented with a chart that rates D.J.’s Pull-up dryness before bathroom times, and his willingness to sit and ability to urinate with each trial.
· Parents will be offered times to learn how to do this at home.
RESULTS: Parents agree to work on many of the above steps and will return in 2 weeks. It may take that long or longer for them to start receiving the prescribed diapers and longer to see IEP changes.
STEP 2. GETTING STARTED AT HOME
Now D.J. needs to make the connection, the “Aha moment,” between the feeling of the need to urinate and the feeling of urination and wetness. To help this family help him get there, encourage the parents to:
Go to the library to borrow picture board books or videos on this topic.
Have D.J. watch or read a social story on toilet training and encourage the parents to search for free ones online (search “toileting social story”).
It is often helpful to use a toileting chart for a couple of regular days to document what times the child urinates and defecates. Some children are very regular and parents can use these known times to their advantage by taking children to the toilet before these times.
Consider taking D.J. out of Pull-ups to help him learn about wetness. For some children this may be helpful. If underpants get too messy for parents, encourage them to have D.J. wear underpants under the Pull-up during the day. This will contain the mess while trying to teach him the connection between the need to go and wetness. However, to prevent diaper rashes, ensure that someone will check for wetness and change him in a timely manner when wet.
In the warmer months, a secluded backyard can allow a younger child to play for a supervised time without clothes, which may help make the connection between the feeling of the need to go and urination.
Hourly checks and use of a bedwetting alarm during the day can alert the parent/care provider when D.J. has gone. This may also help the parent understand when he needs to go and the impact of different beverages and solids on the urine flow.4
RESULT: Mom reports that she has a bunch of books and videos on toilet training but it is hard to sustain D.J.’s attention. Encourage use of the shorter social stories that may be 2 to 3 minutes long or just review a picture exchange toileting schedule.
STEP 3. SITTING TRAINING
Now it is time to have D.J. sit on the toilet and see if he will urinate. Although standing can be a good option for certain boys, it also requires the ability to aim forward to direct flow into the toilet. (Later, a Cheerio or smiley face drawn on toilet paper placed in the toilet may help him learn to aim.) The parents call to say that they can’t even get him to sit for 10 seconds with his pants on. Listen to them vent, and then encourage them not to give up.
Encourage the parents to print out a visual toileting schedule so D.J. can begin to have a better understanding of expectations. Insist that his school use it as well. The school can use sign language or augmentative communication to teach D.J. to request the bathroom-using words related to the steps and wet versus dry. Visual toileting schedules are available at Autism Speaks (www.autismspeaks.org) and the National Down Syndrome Society (bit.ly/NDSS-toilet-training).
You ask the parents if they have a smartphone and encourage them to download a fun and free visual timer (ie, a countdown app) so D.J. understands how long they will ask him to sit. Have them have him practice different things for 10 seconds so he develops an understanding of that time frame and reward him when he does complete the 10-second task with the app sticker, a song, or a short personal video. Slowly increase this time by 5 to 10 seconds.
At first D.J. may need to have his pants on until he really understands the visual schedule and the “sitting with pants down” concept. Autism Speaks recommends sitting for 6 times in a day. When D.J. understands the need to sit with pants down, he is ready for a more intensive training session.
RESULT: At this point, the parents report that they have a toileting schedule, Pull-ups are being mailed to their home, and they have asked for toileting goals on D.J.’s IEP. A home therapist is helping the family with toileting goals. The therapist is helping with the sitting goal. Mom says it didn’t dawn on her to break down the task of sitting into smaller steps such as sitting with pants on for 10 seconds before learning to sit with pants down. She is seeing progress.
STEP 4. WEEKEND WORK: CAN HE PEE IN THE TOILET?
Plan on offering D.J. lots of his favorite drink in the morning on the start day. Families will need access to several sets of clean clothes to change into when accidents happen and access to water to clean dirty clothes.
Make sure D.J. has access to the toileting visual schedule that can be used at home and at school, and that all are pointing to the relevant task at appropriate times. He will need to learn details on the toileting schedule including pulling pants up and down, and wiping and washing hands.
To help keep track of time intervals during training, it is worth discussing use of smartphone alarms, the free toilet-training app (ie, time to toilet or potty training time), or “the potty watch” (available online or from many large stores) for use at home and school. This will help prevent avoidable accidents caused by loss of attention to time since the last sit.
Based on the temperament of the child, sitting times will be from 1 up to 5 minutes every 30 to 60 minutes for the next several hours. Offering a toy, book, or 3-minute video on a favorite topic can reward sitting time. A positive rewards chart with stickers (search http://www.pottyscotty.com/CTGY/Free.html ) or other small positive rewards can help. Not all children will agree to this sitting plan, so modify accordingly; ie, sitting every 120 minutes or only for total training for 2 hours at a time.
RESULT: After sitting intervals on 2 days, D.J.’s parents call to say that he urinated IN the toilet. D.J. is now ready for habit training. You congratulate them and check in again regarding the toilet-training goals in his IEP. D.J. really needs consistency at school and at home with this plan.
STEP 5. HABIT TRAINING
Ensure that timed toileting sessions are on D.J.’s daily school schedule and that school personnel use the visual toileting schedule as well.
D.J.’s school should have him on a timed schedule for toileting with a plan to increase the time between bathroom intervals when he is consistently dry. He may need to go every 30 to 60 minutes in the beginning with the hope of extending intervals to 2 to 3 hours as tolerated.
Have a plan for accidents that are inevitable for all children learning this skill. A run to the local used clothing store will allow D.J. to have some extra sets of pants, shirts, underwear, and socks at school, in the car, or at the babysitter’s. Dirty clothes can go home in a knotted plastic bag for parents to wash. Make sure D.J.’s school has a plan for a private place with supplies for an older child to be cleaned up.
RESULT: D.J.’s parents are happy with his progress. He is now habit trained and uses the toilet every 2 hours with only occasional accidents. Mom is using a toilet timer on her phone to remind her to take him. He is in Pull-ups overnight and on days she is traveling with him. The family is hopeful that he will continue to make progress.
STEP 6. SELF-INITIATION: THE FINAL FRONTIER
Many schools and families may stop at habit training if a child can go every 2 to 3 hours during the school day. However, this prevents training toward self-initiation. Self-initiation is the crucial step toward toileting independence.
D.J. should be asked if he needs to go to the bathroom verbally, with sign language, or with augmentative communication so he can learn to communicate this need to others. Make this an IEP goal:
· D.J. will demonstrate his need to use the bathroom at least 2 times during the school day using sign language or augmentative communication.
Ask the parents to become more aware of D.J.’s intake of foods and drinks that increase his need to urinate (watermelon, caffeinated beverages, soups, and popsicles) and to increase times between voids to see if he will self-initiate by taking himself to the bathroom.
Continue to work on wiping with an appropriate amount of toilet paper/wipes. Ensure D.J. is washing his hands after each bathroom break.
RESULT: D.J.’s parents are currently working on the final frontier. He has good days and harder days, but his parents are amazed that he has made it this far and they are hopeful he will continue.
Although being in diapers and Pull-ups while young is manageable, this will not resolve without a group effort for many children with severe autism and/or intellectual disabilities. Failing to toilet train children can limit their future in a variety of ways.
Unsuccessful efforts have been made by researchers to apply the Foxx and Azrin5,6 protocol to parents of preschoolers with autism and other intellectual disabilities in the home setting. Many parents may find the entire solo effort too overwhelming and may prefer to rely on Pull-ups for the time being with hope for improvements when school can become involved. Waiting for the correct age when school efforts are included may lead to higher levels of success.
I have had success with many families slowly guiding them through these steps and stressing school participation. Unique scenarios can become challenging, so sharing and exchanging creative ideas with a team of school personnel, therapists, and nurses can be critical to finally achieving success.7
1. Blum NJ, Taubman B, Nemeth N. During toilet training, constipation occurs before stool toileting refusal. Pediatrics. 2004;113(6):e520-e522.
2. Peeters B, Noens I, Philips EM, Kuppens S, Benninga MA. Autism spectrum disorders in children with functional defecation disorders. J Pediatr. 2013;163(3):873-878.
3. Tabbers MM, DiLorenzo C, Berger MY, et al; European Society for Pediatric Gastroenterology, Hepatology, and Nutrition; North American Society for Pediatric Gastroenterology. Evaluation and treatment of functional constipation in infants and children: evidence-based recommendations from ESPGHAN and NASPGHAN. J Pediatr Gastroenterol Nutr. 2014;58(2):258-274.
4. Levato LE, Aponte CA, Wilkins J, et.al. Use of urine alarms in toilet training children with intellectual and developmental disabilities: a review. Res Dev Disabil. 2016;53-54:232-241.
5. Azrin NH, Foxx RM. A rapid method of toilet training the institutionalized retarded. J Appl Behav Anal. 1971;4(2):89-99.
6. Foxx R, Azrin N. Toilet Training the Retarded: A Rapid Program for Day and Nighttime Independent Toileting. Champaign, IL: Research Press; 1973.
7. Wheeler M. Toilet Training for Individuals with Autism or Other Developmental Issues. 2nd ed. Arlington, TX: Future Horizons Inc; 2007.