Toilet training for autistic children: Crowdfunding a new approach (transcript)

This is the transcript of my recent podcast interview with Daniel Mruzek, PhD. He's using crowdfunding site Innovocracy.org to raise money for a research and development project. If you'd like to contribute, do so here.David E. Williams:  This is David Williams, cofounder of MedPharma Partners and author of the Health Business Blog.  I’m speaking today with Dr. Daniel Mruzek.  He is a psychologist at the University of Rochester Medical Center and he has one of the first projects featured on Innovocracy.Dr. Mruzek, thank you for being with me today.Daniel Mruzek:  Well, it’s a pleasure.  I’m happy to be here.Williams:  Tell me about some of the issues that parents and caregivers face when they’re toilet training kids who have autism.Mruzek:  Many children with autism learn to use the toilet much later than the general population.  In fact, many children with autism still are not toilet trained by the time they enter the school age years and some are not toilet trained by the time they reach even middle school or high school.  One of the participants in a study that I conducted about a year and a half ago was 16 and was not yet using the toilet independently.Williams:  What techniques are typically used for toilet training kids with autism and how do these techniques differ from the techniques that are used with kids who are developing in a more typical manner?Mruzek:  Strategies that are typically used with children with autism center upon the use of positive reinforcement for urination into the toilet.  In short, a behavior modification approach is used or sometimes, the phrase “applied behavior analysis” or the “applied behavior analytic type intervention” is used to facilitate toilet training.How that looks though, is much like training for children who are typically developing but much more structured and often, much more intensive and lasting for longer periods of time.Now, this isn’t true for all children with autism.  I want to point out that some children with autism do train up very, very quickly.  In fact, some can train up in a day or two once they’re ready.  I want to be careful not to overgeneralize the problem.Having said that though, for most children with autism, there is a concerted effort on the part of parents, and often teachers, to toilet train; they use very highly structured methods including the use of behavior modification, primarily positive reinforcement for attempts and then subsequently, success, and it could take a great deal of time.Williams:  What are the areas that you have pursued in your research on this topic?Mruzek:  Well, I work clinically for a good portion of my week and so I see a lot of children, many children with autism in my particular practice and many are not toilet trained.  In fact, that’s often the referrals, to help families and teaching staff.  I use many of those behavior modification techniques I just alluded to, but I was looking for a strategy that reduces the stress for parents and teachers and the child, and was effective, and hopefully effective in a shorter period of time.One of things I stumbled upon in my clinical travails was the use of a bedtime alarm.  There are some products on the market for teaching children to be dry through the night, not to wet their beds.  These are usually little alarms that go off when the mattress is wet, and that sets the occasion for changing up the bed, changing into fresh night clothes, that kind of thing.  This is reasonably successful for many children who have what’s called “nocturnal enuresis” or bedwetting.What I did is I took that technology and I adapted it for day time use in the context of the classroom for children with autism.  We had some nice success clinically and it set the occasion for my research project, looking at a way of combining simple technology with a curriculum that maximizes the probability that a child with autism will be toilet trained in a reasonably short period of time and with less anxiety for all parties involved than other methods.Williams:  You have a specific project that you proposed, and it's posted on the Innovocracy site for funding.  Are there specific aims for this specific project?Mruzek:  Absolutely.  A few years ago,  biomedical engineer Steve McAleavey and I applied for and received some intramural funding, some startup money to pilot out our toilet training concept and technology with some children with development disabilities.  That was very successful, but we have some more work to be done in working out both the curriculum and the technology, and then making it available to parents and teachers.To answer your question directly with regard to our relationship with Innovocracy, we’re looking at carrying on a bit more of the piloting, looking at a broader range of children with developmental disabilities, children with autism, and documenting both when it will work and when it may not work.  Because it’s possible that this kind of teaching approach for toilet training will work with some children, but possibly, not with others.  We’d like to test it out so that we can be confident when it’s recommended for use by parents and teachers.Williams:  Why have you turned to Innovocracy for funding this project?Mruzek:  This is the kind of project that is difficult to get on the radar of big funders, either NIH funds or some other private foundations that give large grants.  This has been a difficult one to draw their attention and so, I’m looking for somebody who can help me further develop the prototype technology and  the prototype curriculum.We can do this with  "small N" research.  That is, we don’t need terrifically large numbers at this stage of development.  What I need is funding to work with few families with children with autism, to bring this prototype to the point where (a) it can be available to others clinically, and (b) if indeed it continues to be successful, we can eventually look at some large end research to really document when it’s most appropriate and most helpful.Williams:  What sort of response have you seen so far to the funding request?Mruzek:  It’s been terrific.  We’ve been with Innovocracy now for about 10 days, I believe, and we’ve already had over two dozen people step forward to sponsor this research.  I’m very gratified by that and appreciate the people who see the potential here, to help children with autism and their families.Williams:  I know this crowdfunding approach is being applied to scientific research and development for the first time and I’m wondering from a sponsor standpoint, will they get something out of participating?  For example, do you plan to communicate with them?  What should somebody expect if they’re giving a donation to the research?Mruzek:  I’d be more than happy to keep the community updated with regard to progress.  This can be done, I would imagine, through the blog site or if the individuals care to contact me here directly at the university. I’d be more than happy to get them updated as to the progress and again, bring this technology to bear to help families.Williams:  That’s terrific.  For those listeners out there, I’ve made a donation myself and I encourage you to do the same thing.Dr. Mruzek from the University of Rochester, thank you very much for speaking with me today and I wish you great success with this project and others.Mruzek:  I appreciate the chance to talk about this project and to share with you some ideas we have to improve the quality of life for children with autism and their families.  Thank you very much.