Insomnia Treatment Plan Helps Daughter with Autism
August 13, 2013
By Cindy Hutter
|Luz Belleza-Binns with her daughter, Mia
Mia has slept continuously with her mother, Luz Belleza-Binns, since she was a baby. At first, it provided much needed comfort for the young child with autism spectrum disorder. As Mia grew, Belleza-Binns tried transitioning Mia to her own bedroom, but Mia would wake up frequently calling for her mother. In order to sleep through the night, Mia went back to sleeping in Belleza-Binns’ bed. Now at the age of 7, Belleza-Binns knew it was time for Mia to learn how to sleep in her own bed in her own room. What she was unsure of was how to make the transition stick.
Belleza-Binns joined a project testing a plan for alleviating insomnia in children with autism at Vanderbilt Kennedy Center of Tennessee, the center where Mia receives treatment for her disorder. The center is one of 14 across North America engaged in the Collaborative to Improve Care for Children with Autism Spectrum Disorders
, a project led by the Autism Speaks Autism Treatment Network (ATN) and NICHQ. The hope is to discover best practices about how best to treat insomnia and other physical symptoms of autism and share them broadly with medical practitioners.
Read how the Toronto team in NICHQ’s Collaborative to Improve Care for Children with Autism Spectrum Disorders is working to educate families of children with autism on the best ways to reduce insomnia.
“The center offered me many possible strategies to try and provided me with materials, like a sleep toolkit. They were very open to listening to my struggles with routine change,” says Belleza-Binns. “They valued my input and together we made a cohesive plan.”
That plan included establishing a bedtime routine that was understood by Mia and the adults providing care to her, which includes taking medicine, brushing her teeth, putting on pajamas and then getting into bed. Working together, Belleza-Binns and the team created a visual guide that explains what happens when Mia gets into bed, including pictures of a little girl closing her eyes and sleeping.
“It definitely is a success,” says Belleza-Binns. “Putting her in her room and then having some time for myself at night has been great. I’m sleeping better because I know she is not going to call me or get up. Most nights I don’t have any problems.”
|Mia in bed, sleeping with the guide next to her.
If there are problems, the visual guide reminds Mia what to do. In one scenario, it says, “if I wake up in the middle of the night and I open my eyes I close my eyes again and count to 10.” Nights with thunderstorms and lightening are scary for Mia and the family has a special story that they read when this happens.
“It has been an ongoing process,” explains Belleza-Binns. “We keep creating stories and visuals for things that come up. For a while she kept asking me to re-tuck her under the covers. Now we have a story about it and she knows what to do if she is cold. She is getting it. She has improved so much.”
To reinforce the good behavior, Mia receives small prizes, such an extra 10 minutes of iPad time or being allowed into Belleza-Binns’ room at 6 a.m.
“She’ll come in and say, ‘it’s a beautiful morning,’” says Belleza-Binns with a chuckle. “We’re now working on teaching her to stay in her bed longer on weekends.”
With the lessons from working with the Belleza-Binns family, the Vanderbilt Kennedy Center is making adjustments to its insomnia treatment approach and then testing the changes with additional families. The Vanderbilt Kennedy Center and others teams in the Collaborative performing similar work hope to create a standard treatment regime for treating insomnia in children with autism by year’s end.
Learn more about NICHQ’s work in this area