Posted by Elizabeth Shick, DDS, MPH, assistant professor at Children’s Hospital Colorado and the University of Colorado School of Dental Medicine, one of 17 Autism Speaks Autism Treatment Network (ATN) sites across North America.
As a dentist, I can only hope that when I say “open wide,” that’s exactly what the person sitting in my dental chair does. When I see children in my practice, I know I won’t get my wish every time. Many children with autism spectrum disorder (ASD) have difficulty following directions during routine dental cleanings. Nonetheless, I love working with these kids and their families. So I’ve adapted my practice so that everyone involved with these wonderful patients gets the most out of each visit.
A few years ago, for example, I had a visit I will never forget. The family had not one but two sons with autism. My receptionist greeted the family and after consulting with the parents, we decided it would be best for me to see the six year old first, and then see his eight-year-old brother. He came into my small examination room with his mom and immediately began pacing and staring at the floor as if looking for something he had lost. I asked him to sit in the chair. He didn’t respond or look up. It was clear that the bag of tricks I learned in dental school wasn’t going to get him to cooperate.
To coax him into my examination chair, I asked his mom to hold his hand and help steer him into the chair. She continued to hold his hand during the entire visit. I made sure not to rush through with my typical routine. Instead, I showed him the mirror and toothbrush I was going to use and explained to him, each step of the way, what I was going to do next.
After a while, he began to make eye contact with me. He even smiled. He didn’t do everything I asked, and he struggled through certain parts of the appointment, sometimes trying to sit up or jump off the chair. But we got done what we needed to—a dental cleaning, a thorough dental exam, and a fluoride application. Then his dad came in with his older brother, and we did it all again.
During dental school, few students practice treating patients with ASD. For this reason, many dentists may feel uncomfortable when caring for patients with autism, and it can be difficult for families to find a dentist who understands their child’s needs.
I have been fortunate to work with some wonderful autism specialists here at Children’s Hospital Colorado. With support from Autism Speaks’ Autism Treatment Network (ATN), we created Treating Children with Autism Spectrum Disorders: A Tool Kit for Dental Professionals. It is designed to help dental professionals like myself understand autism and work with parents to help make office visits successful. I often use the recommendations in the tool kit in my own practice.
With autism on the rise, it’s becoming more and more important that dental providers—including dental hygienists, dental assistants and even front desk staff—have the most current information about autism and know how to interact with families affected by it. It is our sincere wish that more dentists will be empowered by our tool kit to welcome these children into their practice and help make their visits a positive experience. We hope you will share the new Dentist Tool Kit with your dental care providers. You can download for free, here. Also see Autism Speaks Dental Tool Kit for families, here.
This week’s answer comes from two of the clinicians who work within our Autism Treatment Network (ATN) and our Health Resources and Services Administration funded Autism Intervention Research Network on Physical Health (AIR-P). Both helped write the Autism Speaks Toileting Toolkit for parents, which will become available this fall.
Psychologist Terry Katz, PhD, of our Denver ATN Center
Around half of all children with an autism spectrum disorder (ASD) learn to use the toilet later than other children. In the Autism Speaks ATN/AIR-P Toileting Tool Kit due out this fall, we talk about why your child might have trouble and provide tips for achieving success. Here are some important points:
Toileting Challenges with ASD:
* Physical: Talk with your doctor about medical reasons that may make toileting more difficult for your child. These can include constipation, and kidney, urinary tract, or bladder problems.
* Language: Language delay can make it difficult for a child to ask to use the toilet. Children may need other methods to communicate their needs.
* Fears: Your child may be afraid of sitting on the toilet or hearing it flush.
* Body cues: Some children with autism have difficulty sensing the “need to go” and may not realize that their clothes are wet or soiled.
* Dressing: Can your child easily pull up and down his or her pants? This may need to be addressed.
* Need for sameness: Your child may have developed a habitual way of toileting and, so, may resist doing so “your way.”
* Using different toilets: Your child may have difficulty toileting in new places—such as school vs. home.
Tips for Parents:
Sit for six: Set a goal for six toilet sits per day. Start out slow. First trips may only last 5 seconds. Encourage boys to sit to urinate until they regularly have bowel movements on the toilet.
Don’t ask, tell: Take your child to the toilet and tell them it is time to go. Don’t wait for them to tell you that they need to go.
Stick to a schedule: Take your child to the toilet at the same times each day. Track when they urinate or have bowel movements and use those times if possible. Otherwise plan toilet trips around your usual routine. And think ahead: Take your child to the toilet before he or she starts an activity that will be difficult to interrupt.
Communicate: Use the same simple words, signs, or pictures during each trip. Talk with other people who work with your child. Everyone on the team needs to use the same toileting communication plan.
Reward: Praise your child for trying. Give your child a favorite treat or reward right after going in the toilet. Be matter-of-fact when accidents happen.
Consider comfort: Your child needs to feel safe on the toilet, with feet supported for balance. Also address sensory difficulties your child may have with sounds, smells, lights, or textures in the bathroom.
These are just a few of the ideas we discuss in the forthcoming Autism Speaks ATN/AIR-P Toileting Toolkit.
Please remember: Toileting can be difficult for children with an ASD. One study found that they needed a year and a half of training, on average, to stay dry during the day and more than two years to become bowel trained. So don’t become discouraged. Be consistent. Build routines. Talk with your doctor. And look for the launch of the Autism Speaks ATN/AIR-P Toileting Tool Kit. We’ll keep you posted here in the blog and on the ATN’s Tools You Can Use section of the Autism Speaks science pages.
The Autism Speaks ATN/AIR-P Toileting Tool Kit is the product of on-going activities of the Autism Treatment Network, a funded program of Autism Speaks. It is supported by cooperative agreement UA3 MC 11054 through the U.S. Department of Health and Human Services (HHS), Health Resources and Services Administration (HRSA), and Maternal and Child Health Research Program (MCHB) to the Massachusetts General Hospital. Its contents are solely the responsibility of the authors and do not necessarily represent the official views of the MCHB, HRSA, or HHS.