Pervasive Computing and Autism: Assisting Caregivers of ...

1 28 Pervasive computingPublished by the IEEE Computer Society 1536-1268/07/$ 2007 IEEEP ervasive Computingand autism : AssistingCaregivers of Childrenwith Special NeedsCaring for children and older indi-viduals with autism is often a com-plex, lifelong challenge. Familiesand care networks for children withautism often face numerous choicesregarding types of therapies, doctors, and drugand diet regimens. Each child s unique naturemakes predicting which treatments will work dif-ficult, and timeliness is often critical. For thesereasons, parents might chooseto try several treatments simul-taneously, making it evenharder to determine whichtreatments work and whichdon t. Further complicationsresult when Caregivers don t seethe effects of treatment immediately, perhapsbecause the changes are minor or , many Caregivers help determine if achild is receiving the best treatments possible.

2 Thesheer amount of data they must collect can oftencause difficulty in making the best choices for thatchild. Also, individuals with autism often can tcommunicate their internal states, so caregiversmust rely on externally perceivable characteris-tics to determine the person s needs. Technology can make caring for children withautism more efficient or hide some of its complex-ities. Data capture and analysis is an important partof making decisions about whether a treatment isworking. Pervasive technology can help increasethe amount of data collected, make it easier to col-lect, and help Caregivers quickly scan through datato make better decisions. Technology can also helpthe Caregivers on a child s team communicate moreeffectively and is autism ? Pervasive development disorder, also known asautism spectrum disorder (ASD), is a cognitiveimpairment characterized by deficiencies in com-munication, social interaction, and creative orimaginative spectrum includes autisticdisorder ( autism ), Asperger s syndrome, pervasivedevelopment disorder not otherwise specified, andRett s disorder.

3 Individuals on this spectrum oftenexhibit stereotypical, self-stimulatory behaviorssuch as rocking, hand flapping, or is the most common on the spectrum ,affecting an estimated million Americans todayand growing at the astonishing rate of 10 to 17percent annually. autism is typically diagnosedbetween the ages of two and six, although varia-tions of ASD can sometimes be diagnosed earlieror later. The disorder has recently been a populartopic of discussion in the mainstream media, prob- Pervasive Computing technologies can support children with autism and their Caregivers . Work continues on systems that aid record collection and analysis, decision making,communication, and assessment of children s internal A. Kientz, Gillian R. Hayes,Tracy L. Westeyn, Thad Starner,and Gregory D. AbowdGeorgia Institute of Technologyably because it s being diagnosed at amuch higher rate than ever before.

4 Cur-rent estimates from the autism Society ofAmerica are that 1 in 166 children will bediagnosed with some form of autism atsome point in their autism typically presentsitself in individuals in some known ways,it manifests differently in each personand sometimes differently in the sameperson over time. This extreme variationamong children has led practitioners andfamily members alike to make the anec-dotal comment, If you ve seen one childwith autism , you ve seen one child withautism. Evidence from the behavioral, educa-tional, and social sciences indicates thatearly diagnosis and intervention could bekey to achieving greater independence, anultimate goal of these care other language acquisition disorderssuch as deafness, children who don tachieve functional language by school agecan be severely limited in their future abil-ities to interact with , care-givers are often in a race against time tofind treatments that will work for theirchildren.

5 Treatments include pharmaco-logical interventions, special diets, holis-tic approaches such as occupational ther-apy and sensory integration, behavioraltherapies such as applied behavior analy-sis or functional behavior analysis, andsymptom-specific treatments such asspeech or language therapy (see the side-bar Additional Computing TechnologiesSupporting Individuals with autism ).Moreover, Caregivers often try differentinterventions technologies to support caregiversOur work at Georgia Tech for the pastthree years has focused on supportingindividuals with autism and their care-givers with Computing technology. We veexplored several dimensions of the carecycle and network; here we present threeof those : Supporting collaborativedecision making Discrete Trial Training (DTT) therapyis a current best-practice intervention forchildren with autism in which therapistteams teach basic skills intensively andone-on-one.

6 Therapists assign a grade forthe level of independence at which thechild was able to complete the skill. Aftereach therapy session, the therapists cal-culate the percentage correct for each skilland then plot the data points on hand-drawn graphs. Every one or two weeks,all the therapists meet to discuss the child sprogress and how they might change theirtherapy practice to make the child moresuccessful. During these meetings, com-mon discussion points are the skills thechild can accomplish and clarifications onthe grading of particular skills. To beeffective, DTT involves rigorous data col-lection and analysis. Unfortunately, it salso subject to inconsistencies and inac-curacies because all therapists have dif-ferent skills and different interpretationsof therapy s developed the Abaris system to sup-port teams of DTT this practice through phoneme-spotting voice recognition, which pro-JANUARY MARCH 2007 Pervasive computing29 Other researchers have explored technology for use by the indi-viduals themselves rather than by their Caregivers .

7 These de-vices include Simone Says, a system using voice recognition technol-ogy to teach and analyze language The Discrete Trial Trainer( ) is commercial software that attempts to replacethe therapist by administering similar therapy and education throughthe computer. Simone Says and DTT can ease some of the burden oncaregivers by letting a computer administer technologies have focused on how to teach individualswith autism social skills and aid their communication. Andrea Tar-taro has explored storytelling with virtual peers to teach social skillsto children with autism in a risk-free setting,2while researchers atMIT have looked at how to emphasize people s images to help indi-viduals with autism understand subtle emotional workby Anne Marie Piper and her colleagues explored using a multi-player tabletop game called SIDESto encourage children with autismto learn social interactions and types of sociallybased applications, used in conjunction with other treatments, canprovide a richer education in social skills and leave the caregiverswith more time for other, more pressing Lehman, Toward the Use of Speech and Natural Language Tech-nology in Intervention for a Language-Disordered Population, Int l ACM Conf.

8 Assistive Technologies, ACM Press, 1998, pp. 19 A. Tartaro, Storytelling with a Virtual Peer as an Intervention for Chil-dren with autism : Assets Doctoral Consortium, Proc. 7th Int l ACMSIGACCESSConf. Computers and Accessibility, ACM Press, 2005, pp. 42 R. Kaliouby and P. Robinson, The Emotional Hearing Aid: An AssistiveTool for Children with Asperger Syndrome, Universal Access in the Infor-mation Soc., vol. 4, no. 2, 2005, pp. 121 134. 4. Piper et al., SIDES: A Cooperative Tabletop Computer Game forSocial Skills Development, Proc. 20th Anniversary Conf. Computer Sup-ported Cooperative Work (CSCW 06), ACM Press, 2006, pp. 1 Computing TechnologiesSupporting Individuals with Autismvides indices into videos of therapy ses-sions (see figure 1a). Therapists use anAnoto digital pen to capture data andprovide additional indices to the can access the videos duringtheir team meetings via an interface (seefigure 1b).

9 Because of the easy indexing,a therapist can use video evidence toreview progress, find inaccuracies in grad-ing, and show problem areas to othercaregivers. Abaris also lets therapists auto-matically generate graphs and associatethem with the data sheets they used dur-ing therapy (see figure 1c).We deployed Abaris for four monthswith one particular home-based DTTteam and found that the system enabledtherapists to use objective evidence morefrequently in the decision-making used videos, graphs, anddata sheets more frequently than they didwithout Abaris. Prior to Abaris, theywould rely on their own recollections ofwhat happened during therapy and onlyconsult written data sheets if also determined that using Abaris dur-ing team meetings increased collaborationamong the : Capturing andanalyzing behavioral dataChildren with autism and other devel-opmental delays exhibit behaviors thatare often inappropriate and might be dis-ruptive or dangerous to themselves or oth-ers.

10 To address these behaviors, teachers,specialists, and parents often try to under-stand their cause. One best practice fordetermining cause is known as functionalbehavior assessment. When done in thenatural environment, FBA includes directobservation. Caregivers , seeing a behav-ioral incident, note the incident s contextand what happened directly before (an-tecedent) and after it (consequence). Oncethe number of incidents recorded by 1. Screen shots from Abaris datacapture and analysis technology: (a) capture interface, (b) video previewscreen, and (c) data analysis graphs of a child s reaches a point of data satura-tion (usually 20 to 30 incidents over a fewweeks), a behavioral specialist analyzes thedata to determine the behavior s func-tion for example, the child might bescreaming to gain the teacher s classrooms and homes, observing thesebehaviors rigorously enough to have con-fidence in an assessment can be might occur at unexpected timesand places, and Caregivers might not beable to write down what happened beforeor after while simultaneously managingthe behavior is a prototype system designedto help Caregivers document and analyzespecific, unplanned incidents of interest aspart of an FBA.