By Amy Kelly, who serves on the Family Advisory Committee of the Autism Speaks Autism Treatment Network (AS-ATN) at the Children’s Hospital of Philadelphia.
I’m writing this to tell you about a life-changing moment at the Autism Speaks National Conference for Families and Professionals, in the summer of 2012.
At the time, my daughter Annie, age 10, was still not toilet trained. Annie is nonverbal with moderate to severe autism spectrum disorder. She was still having accidents outside of the bathroom. I was alternating between feeling desperate for any kind of help and discouraged that I would never find it.
Together with her team of therapists and teachers, I had used every resource, therapy and intervention we could identify. And still we couldn’t help Annie become fully potty trained. Frankly, I was tired of cleaning poop off the sheets and walls, tired of diapers and pull-ups. I was exhausted. And Annie, I know, felt awful about the situation. She didn’t want it to be this way either.
That day at the Autism Speaks conference, I sat down to hear gastroenterologist Tim Buie speak about the GI issues that commonly affect children with autism. It may seem odd in retrospect, but a GI doc was the one specialist that I hadn’t consulted about Annie’s inability to master toileting.
We’d seen a GI specialist when Annie was a toddler and suffered from both reflux and constipation. But I thought she’d grown out of all that. We hadn’t gone back in years.
Then I heard Dr. Buie point out that for individuals with autism, GI problems commonly recur throughout life. And when they affect a child with autism – especially a nonverbal child – it may not be readily obvious. [Editor’s note: Dr. Buie practices within the AS-ATN at Boston’s Massachusetts General Hospital. Read his Q&A on GI distress and autism here.]
My mother’s intuition told me to waste no time making an appointment with a specialist. Fortunately, Annie receives her care through the AS-ATN center at the Children’s Hospital of Philadelphia. So I knew the GI specialists would have experience working with children who have autism.
I actually called the doctor’s office from the National Conference, in Ohio, and set up the appointment for shortly after I returned home.
The doctor thoroughly examined Annie and interviewed me. Sure enough, it looked like our little Miss Annie had been battling constipation all along! We couldn’t always recognize it from her bowel movements or lack thereof. Annie had suffered from constipation for so long that it had damaged the nerve endings in her colon – the nerves that would normally signal her brain when she had “to go.”
That’s why all her “number 2s” had turned into accidents!
But the AS-ATN specialist knew what to do. He had us start by incorporating a stool softener –Miralax – into her diet twice a day. Because it was a clear, flavorless and odorless powder, she accepted it easily with water. In addition, 20 minutes after every meal, we’d take Annie to the toilet to sit for up to 10 minutes.
Within four months, my Annie became fully potty-trained. No more accidents. As Annie’s mother, it’s no overstatement to say this was a monumental accomplishment. For Annie too! Even her brothers were so proud of her.
I am pleased that I was invited to write this post as part of Autism Speaks’ “Your Dollars@Work” column. Our story is just one small example of how Autism Speaks’ investment in the AS-ATN and its educational workshops pays off for families every day. As a member of the Family Advisory Committee to our local AS-ATN, I witness similar stories regularly.
If your family has autism-related toileting issues, I highly recommend the new AS-ATN/AIR-P Guide for Managing Constipation in Children as well as the AS-ATN/AIR-P Toilet Training Tool Kit for families. Both are available for free download from the Autism Speaks website.
These resources would not be possible without the support of Autism Speaks’ wonderful volunteers and donors. Thank you!
In closing, I’m excited to report that Annie hasn’t had one accident in two years. Now…. if we can just get through puberty!
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