This Autism Speaks Autism Treatment Network site is putting sleep research into practice within a family-centered approach to care
By Salina Eldon, Toronto site coordinator for the Autism Speaks Autism Treatment Network (left). With Ms. Eldon is Cathy Petta, a sleep specialist at Toronto’s Holland Bloorview Kids Rehabilitation Hospital. The Toronto Autism Treatment Network (ATN) site is a collaboration between Holland Bloorview Kids Rehabilitation Hospital, Sick Kids Hospital and Surrey Place Centre (a social service agency).
As part of the ATN, our site participated in a sleep-education study evaluating the effectiveness of group versus one-on-one parent training. This research was made possible by the ATN’s role as the federally funded Autism Intervention Research Network on Physical Health (AIR-P). This study showed that both group and individual parent education led to improvements in the sleep of children with autism. (Editor’s note: For more about this study, see “Your Dollars@Work: Empowering Parents to Help Children Sleep.”)
Building on the success of this research, our sleep educator Cathy Petta began using the program to educate parents and nurses at Holland Bloorview. In addition, she helped parent educators at Surrey Place Centre deliver the sleep education program there, as well.
During this time, Cathy received a referral for a sleep-education session for the mother of 13-year-old Liam. Liam’s mom explained that he was a capable teen despite his great difficulty sleeping on his own. She felt that including Liam in the sleep education session would encourage him to take more responsibility for improving his sleep habits. In fact, she suggested that we gear the training directly to Liam, with her role being to reinforce the concepts we taught him.
Cathy agreed, but admitted that we’d never tried this direct approach before. She was willing to give it a try – with everyone learning from the experience.
This was when Cathy contacted me. She proposed that we adapt the parent-focused sleep-education program using a combination of three ATN/AIR-P resources:
(Editor’s note: Follow the text links above to download these and other Autism Speaks tool kits.)
With these resources, we began creating an education module for teens with autism. I was happy to help as it allowed me to draw on my experience working with special-education teachers to adapt and create curricula for students with autism.
We kept Liam’s reading and comprehension level in mind as we created a module that featured short, concrete statements along with visuals. (See slide below.)
Once the module was complete, we set a time for the one-hour education session. We presented the lesson on a computer in order to better focus Liam’s attention. This had the added benefit of allowing Liam to move at his own pace and ask as many questions as he wished.
Liam responded well to the visuals, often commenting on what he saw. Because he was having difficulty sleeping alone, we had tailored the lesson to address this challenge. In particular, Liam’s mom said that Liam didn’t understand the reason for sleeping alone. So we focused on the process of growing up and becoming independent – using examples of activities where he was already showing independence (e.g. eating, dressing, going to school) and the importance of being able to do things on his own. (See slide below.)
We also explained why sleep is important and gave examples of how we feel when we don’t sleep enough. This allowed Liam to feel comfortable enough to share how he feels when he gets tired.
Most importantly, we involved Liam in setting goals, and we involved both him and his mom in choosing rewards for success. Finally we provided him with a print-out of the lesson for later reference. This included a visual schedule for his bedtime routine (below). He told us he liked that.
Liam was delightful. He had a great sense of humor, was engaged and asked questions. By the end of the session, he seemed motivated to implement the strategies suggested and set further goals. The plan was to follow up with his mom to see how he was progressing after one month. Below is the email we received from her the following month.
I am writing to advise that I have been very pleased with Liam since the session. He has taken it very seriously and is happy to go to bed now with no fuss. He accepts his routine as his responsibility, and is happy to report each morning that it works. He even sleeps without the lamp and only the night light most nights!! I would like to thank you for your time and consideration with Liam. You had a great impact. I keep using the presentation with him and he is happy to tell us about how to sleep without waking up.
Liam (at right) had a message for us, too, saying “I did not know that preparing for sleep and getting good sleep was so important to my life!”
Six months after the intervention, Liam’s mom reported that he continued to do well in the area of sleep. She added:
I think this is an area neglected by most parents; even those of typically developing kids. Since our experience we have had to coach our friends with typical kids on how to get them to sleep independently with healthy sleep patterns. It is my opinion that this is an area we often ignore as parents. We tell ourselves that as the kids get older it will work itself out. Little did we know that lack of sleep can create a host of other social and psychological problems during young adulthood e.g. in the workplace and in relationships. I think more emphasis should be placed on educating students on the potential consequences and benefits of getting a good night’s sleep.
This experience confirmed for us the importance of listening to patients and families, taking their ideas into account and focusing on their goals to achieve success. We have already scheduled a second teenager for training and plan to do many more of these sessions in the future. We will adapt the presentation to the needs of each child.
In closing, we want to thank the Autism Speaks community for supporting this important work.