A behind-the-scenes look at the makings of the newest Autism Speaks ATN/AIR-P tool kits for parents and professionals
By developmental child psychologists Lindsay Washington (left) and Terry Katz, co-authors of the soon-to-be published Autism Speaks ATN/AIR-P tool kits on electroencephalography (EEG) – one for parents and one for healthcare professionals. Dr. Washington works at Rocky Mountain Human Services, in Denver, Colorado. Dr. Katz is with Children’s Hospital Colorado and the University of Colorado School of Medicine.
We are thrilled for this opportunity to tell you about the inspiration and collaboration that went into our co-authoring two, soon-to-be-published Autism Speaks ATN/AIR-P tool kits on encephalography (EEG). One is for parents; the second for healthcare professionals.
These tool kits – filled with advice and insights – are the latest in a library of autism tool kits made possible through the Autism Speaks Autism Treatment Network in its role as the federally funded Autism Intervention Research Network on Physical Health (AIR-P).
The inspiration for the EEG tool kits came at an ATN annual meeting. These meetings are wonderful brainstorming opportunities involving both parents whose children receive treatment at our centers and a wide range of ATN specialists.
Neurologist Tim Benke, of our children’s hospital at the University of Colorado School of Medicine mentioned how impressed he was with the ATN/AIR-P Tool Kit for Dental Professionals. (Download it free here.) It’s full of practical tips for helping dentists and their staff meet the special needs of patients affected by autism.
Dr. Benke said he and several other ATN neurologists were hoping that we would develop similar tool kits to help parents and professionals ease the sometimes-stressful experience of an overnight EEG procedure for a child or teen with autism.
As many of our families know too well, many children and adults with autism (up to a third) also have epilepsy.
Diagnosing and treating epilepsy is crucial. Research shows that those who have both autism and untreated epilepsy are at risk for poor health and even death. Moreover, seizures aren’t always obvious. But they can still contribute to sleep and behavior problems.
An enthusiastic discussion followed at our ATN meeting, and we created a workgroup to develop the EEG tool kits. Our project team included:
* Parent advisors
* neurologists who interpret EEGs at our ATN centers
* an occupational therapist experienced with autism-related sensory issues
* a child life specialist who provides age-appropriate education and support to children (and their families) during medical testing and procedures
* and the two of us – child psychologists who help children and families with autism-related behavioral issues
Together we set out to use personal experience to create tool kits as informative and helpful as possible.
Parents lead the way
While input from professionals was essential, we knew that our most important advisors would be parents whose children had gone through the EEG procedure. Several ATN families gave generously of their time and personal insights. For example, one mother told us it would have been very helpful to know how to wash the electrode adhesive out of her 4-year-old her son’s hair before sending him to school the next morning!
The mother of a 6-year-old told us it’s important for our ATN clinics to offer families morning appointments for their EEG procedure – as they are typically asked to keep their child awake overnight prior to the procedure.
Shadowing Sam, Sara and Benjamin
Best of all, perhaps, parents Sam and Sara graciously allowed one of us (Dr. Washington) to shadow them during an actual EEG appointment for their 16-year-old son. Benjamin had already undergone several EEGs, which meant his parents had developed some great strategies to make the process easier. For instance, they knew that one of them needed to sit right next to him during the “hook up.” In this way, they could provide reassurance while keeping his hands away from the electrodes being glued to his scalp.
Sam and Sara had also become experts at doling out reinforcement – a sip of Benjamin’s favorite caramel-cream drink – each time he allowed a couple more electrodes to be placed on his head. Thanks to Sam, Sara and Benjamin, we learned just how important it is to approach the EEG procedure as team effort between family and hospital staff – one that requires communication and flexibility along the way.
Conveying the sensory experience
We soon realized the importance of being able to convey to parents the sensory aspects of the complex procedure. This would help them prepare their child for what he or she would see, feel and even smell.
Again, one of us (Dr. Washington) dove in for a first-hand experience at the Children’s Hospital Colorado Epilepsy Monitoring Unit. As a result, our tool kit includes such insightful details as the gritty feel of the prep used to clean the skin and the powerful smell of the sticky liquid that attaches the electrode to the scalp.
All these sensory details helped us convey the process – in a visual story format – in both the EEG tool kits.
It was truly our privilege to collaborate with so many generous individuals during the creation of these tool kits. We want to extend a special thank you to the ATN families who took the time to share their tips and experiences with us.
Editor’s note: The above information is not meant to diagnose or treat and should not take the place of personal consultation, as appropriate, with a qualified healthcare professional and/or behavioral therapist.
Learn more about the Autism Speaks ATN here.
Find the Autism Speaks ATN center nearest you here.
Explore our archive of ATN expert-advice blogs and news stories here.