TECHNOLOGY TO THE RESCUE!

by Minna Levine, OTR/L, Ph.D. President of SymTrend, Inc. and Dot Lucci, M.Ed., C.A.G.S. Director of Consultation, MGH/YouthCare(originally printed in the AANE Journal, Fall 2007)

Teens and adults with Asperger Syndrome usually have academic “smarts,” but are much less proficient in “street smarts:” social skills, life skills, and organizational skills. We have found, however, that people with AS can improve in all three areas, and thus become more independent, with the use of a handheld computer (also called a personal digital assis­tant or PDA) and some special software. This software and the PDA help the people with AS become:
more aware of their internal states and other peoples’ feelings,
more organized, and as a consequence,
more independent.
People with AS like using this tool because it gets au­thority figures (parents, staff at school, bosses at work) “off their backs,” thus allowing them more independence. Their loved ones like it because they feel reassured that the individ­ual with AS is safer and more tuned in. Educators and em­ployers like it because it allows the individuals with AS to be more independent and aware. One source of such software is a Massachusetts-based company called SymTrend. MGH/ YouthCare learned of this software, saw its potential, and contacted SymTrend about using it in our Behind the Scenes teen summer program in 2006.
The software works both on-line and on a PDA. The PDA with its special software serves as a coach, available at all times for guidance about how to handle difficult situations, as a reminder of what to do and what people expect, and as a source of feedback. Three features of the software all contrib­ute to success:
Diaries for self-monitoring.
Checklists and reminders about what to do at particular times of day.
Guidance screens presenting strategies for handling challenging situations.
SymTrend has standard screens; schools, individuals and agencies can also create custom screens to meet needs of spe­cific programs or individuals. The latter is what the staff at MGH/YouthCare did. Employers can create custom screens for job task sequences, to aid people who have difficulty with executive functioning, or need to master a new, complex, multi-step task.
E-Diaries for Self-monitoring
SymTrend software has self-monitoring diaries that work online and on Palm-based PDAs. These “e-diaries” have rat­ing scales and checklists. Users rate items like anxiety, anger, fatigue, and feelings of control. Some diaries have behavior checks that either remind or check in on a person. For in­stance: Did you take your meds? complete work? go to all classes? talk with someone? Negative items might include: Did you skip a meal? play video games until way past your bed time? etc. Users can also check if they were derailed by things like arguments with peers, exams, schedule conflicts, or work demands.
Individuals with AS find that daily use of these scales and checklists is helpful. One person said, “Tracking my moods is therapeutic. I’m able to put something down so it’s not bottled up. I jot it down, and then it gets out.” Over time, individuals with AS can view a summary of their responses in charts, preferably with a therapist or coach, to look for patterns. (See example below.) The charts make it easier to see consis­tent relationships between negative moods/behaviors and the stressors that may have contributed to them, so that the user and the human coach can devise better coping strategies.
Checklists and Reminders The software also provides reminders that help a person with AS maintain a schedule and accomplish certain tasks. SymTrend reminders may be checklists to review at particular times of day. Here’s a sample morning checklist:
An evening checklist might include: Did you pack your backpack for tomorrow?
Users can enter into the date book: repeating appoint­ments, classes, and assignment due dates. A reminder rings at preset times. As one user said, “It really helps you with your awareness of where you are, what you’re doing, and what you need to be doing.”
Guidance Screens
People with AS often need help with sequencing tasks, setting priorities, and recognizing others’ responses to their behaviors. E-diaries can include strategies for how to handle a wide variety of challenging situations. For example, a screen can list the steps for what to do when faced with a schedule conflict: keep calm, check available times, see which task has the earlier deadline, compute time needed to prepare.
SymTrend diaries have some pre-set guidance screens. Coaches can also design custom screens. For example, one person’s screen might recommend: After an argument, do your relaxation exercise. “Testing out the tips, and writing down how it went, has made the reminders stick more than usual,” reports one user.
At MGH/YouthCare we’ve used Symtrend for two years and customized the screens to meet our needs. In our Behind the Scenes teen program, where much of our focus is on self-awareness, social thinking, social skills, and sensory aware­ness, we decided to use Symtrend to facilitate participants’ learning.
YouthCare staff and teen participants both entered data, so we were able to compare data sets of adults and teens. We collected the data a few times a week during specified periods of the day, and then reviewed it once a week with the teens.
Here are samples of some of our screens’ content:
Feelings: anxious, relaxed, frustrated etc.
Self-regulation/sensory: Am I moving around? Am I thinking about what is happening around me? To get my “engine speed” just right I could try stretching, using a fidget, deep breathing, etc.
Stressors: I didn’t get my way. I have to do something I don’t want to do, etc. Common signs of stress: repetitive thoughts, tense muscles, etc.
Cognitive flexibility: stuck on thoughts/topic, repeatedly asking the same questions, etc.
Social pragmatics: Your peer moved away when you were conversing. Were you staying on topic? Did you scan the person’s face/body for information?
During Social Thinking Groups, we discuss their individ­ual data charts/graphs with the teens. Each teen has his/her own charts with both the data entered by teens and by staff. This concrete visual representation proved invaluable for some of our boys. They were able to discuss their data, and recognize the discrepancies between staff perceptions and their own recordings, and make changes in their behavior.
SymTrend is a subscription service available to individu­als, schools, or agencies. Once you activate your SymTrend subscription, all you need is need is a Palm-based PDA (a lower end model such as the Zire 22 is adequate). Software customization is available at extra cost. For more information about SymTrend software, including a video demonstration, go to www.symtrend.com or write to Minna at mlevine@symtrend.com. For more information about MGH/ YouthCare go to www.mghyouthcare.org or call 617-726-­0060.