When Independent Toileting Isn't Possible - Or At Least Not Yet

Independent toileting is a developmental milestone which is often greatly anticipated by parents. Yet if you have a child with Autism Spectrum Disorder (ASD), the challenges of toilet training, which are difficult for almost all parents, may be even more pronounced. Children with ASD may have limited awareness of the need to toilet, which can be compounded by difficulties transitioning to new activities and/or by communication troubles.

Most individuals with ASD eventually are capable of independent toileting; however, this may not occur in the typical timeframe (around age 3). If, despite your best efforts and perhaps even a consultation with a therapist (many families find that an applied behavior analysis approach works best), your child still hasn't mastered toileting, you may have some questions about the impact of delayed toilet learning on your child and family.

Can your child with ASD go to school if he or she isn't toilet trained?

Yes. In fact, you can include toilet training as a goal in your child's Individualized Education Program (IEP) because toileting is a life skill. Note, however, that if you plan on enrolling your child in a private school or preschool where he or she will not have an IEP, the school may refuse to admit children who are not potty trained, even if they have a disability, if typically developing children are also required to be trained.

What about diapers?

Medical Assistance (MA) and many insurance plans may cover the cost of diapers for children over the age of 3 who are unable to toilet independently due to a disability. In this case, diapers are considered a medical necessity for the child. In order to qualify for this benefit, your child's doctor will need to prepare a letter of medical necessity which describes why your child is having difficulty (not just that your child has ASD, but how individual features, such as inability to communicate, are preventing your child from learning to toilet independently.) Your doctor will also need to write a prescription for diapers. You may need to use a medical supply company to obtain the diapers, which will be shipped directly to your home, although some insurance companies and drug stores have arrangements that will allow you to purchase the diapers yourself with a prescription. Insurance plans vary, so it is important to review your policy or MA regulations in your state to determine if your child is eligible for free or reduced-cost diapers and how you can obtain them.

In addition to Medical Assistance, some states may have other funding available to families with significant healthcare needs, which may include the cost of diapers. For example, New Jersey's Catastrophic Illness in Children Relief Fund provides financial aid to families whose total medical expenses exceed 10% of their income (15% if the income is greater than $100,000). Families living in New Jersey may be reimbursed in full or in part for diapers for a child over 3 who is not capable of being toilet trained, as determined by the child's doctor.

Will my child's esteem be affected?

It depends. Children typically learn to use the toilet by themselves around the age of 3. As children learn this independence, they are – as you would expect – proud of themselves and often brag about their accomplishment to anyone who will listen. Your child with ASD may not be socially aware enough to know that he or she has not yet met this milestone. As he or she gets older, however, particularly when beginning school, your child may notice that other children do not require assistance with toileting. If this begins to affect your child's self-esteem, make sure to reinforce your child for all that he or she can do, especially while pointing out challenges that your child has already overcome. Your child's awareness that others are trained may signify that your child is ready to learn, provided that there is not a physical complication that has hindered your child's ability to learn thus far.

What resources are available to help my child learn independent toileting?

When you are ready to start again, consider getting professional help. If your child has an IEP, independent toileting can be included as a life skills goal. Many schools do not have the staff to work with your child on this goal and will therefore need to contract with an outside provider, such as a behavior therapist to work with your child. Alternatively, if you live in Pennsylvania, toilet training may be covered by Medical Assistance, and your child's Behavior Support Consultant (BSC) and/or Therapeutic Support Staff (TSS) can assist. Of course, you can also pay privately for a therapist to work with your child; these services may or may not be reimbursed by your insurance company.

Additional Resources:

• New Jersey Catastrophic Illness in Children Relief Fund