My husband is starting up some research into the sleep routines of children with autism. Sleep is an essential part of learning... and also social interaction... if we are tired it is harder to react appropriately to a given situation... and as I see with my own son, who has autism, he is depleted of his energy reserves sometimes rapidly by things that would hardly bother others... this means that good sleep hygiene is even more essential for my son.
Here is a note from my husband, and a link... please, if you have the time, could you fill in the form, or send the link to parents you know with children on the autistic spectrum who you feel would like to participate. This first part is a world wide search for information that will act as a basis for further research.
Suzanne Axelsson... mother of three - one with the diagnosis autism/ADHD
Are you a parent of a child with autism and have 15 minutes to spare?
Karolinska Institutet is currently conducting a study to explore the complex relation between autistic traits and sleep quality.
While we know that sleep is often affected in this group, the underlying mechanisms remains largely unknown.
If you have a child that has been diagnosed with an autism spectrum disorder or have autistic traits, you can contribute to this research by filling out a questionnaire about your child and his/her sleep, taking approximately 15 minutes. You will not be asked to provide any identifying information such as name or date of birth, meaning that your answers will remain strictly anonymous and confidential. The data will be used for developing better interventions to improve sleep quality and day time functioning in children with autism.
Simply click on this link to participate (https://survey.ki.se/Survey/4695/en) but please make sure that you have 15 minutes to spend as you only can access the questionnaire once.
Thank you very much for your time, and don’t hesitate to contact me if you have any questions!
Associate Prof. John Axelsson,
Dept. Clinical Neuroscience
Karolinska Institutet
I started to take the survey, but could not complete it. My 8 year old son has severe autism. His difficulties in communication, (he is only pre-verbal), make it difficult to answer many of the questions accurately. The survey appears to based on children on the spectrum that generally have a command of spoken language, a certain, degree of socialization skills and a certain level of independence. As such, the scope of the sleep study seems limited to those who would be deemed'high-functioning' and on the milder end of the spectrum. His sleep difficulties are managed solely through behavioural intervention without medication. The sleep program we designed is dynamic and has changed as his needs have changed over the years. Perhaps in the future the institute will design a study that encompasses a greater scope.
ReplyDeleteyes, this is something I have taken up with my husband too... my son, who is verbal, still did not fit all the categories that were made available... sadly the questionnaire could not be changed very much as it "belongs" to someone else. But your point of view is very valid, and important for future studies - to ensure that it is more inclusive.
DeleteThank you for your feedback it is much appreciated. Not only for taking time to attempt the questionnaire, but also taking time to let us know about its shortcomings.
/Suzanne.