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Autism research at home

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July 30, 2013



Par­ents are trea­sure troves of obser­va­tional infor­ma­tion, whether they’re watching how the behavior of their kids changes based on what they eat or how much they sleep. For par­ents of chil­dren with autism, this type of infor­ma­tion can be invalu­able to clin­i­cians and researchers alike. But, according to assis­tant pro­fessor Matthew Goodwin, there is a dif­fer­ence between knowing that your child’s behavior changes when he eats cer­tain foods, for instance, and knowing how often this occurs or how intense the behav­ioral changes can be. Goodwin said that infor­ma­tion would be an impor­tant factor in deter­mining whether those foods really are cor­re­lated to his behavior and, if so, what to do about it.

For that sort of infor­ma­tion, said Goodwin, a parent’s watchful eye is simply not enough. To answer those ques­tions, he needs quan­ti­ta­tive data.

A leader in the emerging field of per­sonal health infor­matics, Goodwin recently received a $1 mil­lion grant from the Simons Foun­da­tion Autism Research Ini­tia­tive to turn par­ents into para-​​professionals, allowing them to col­lect research-​​grade data via easy-​​to-​​use, non-​​disruptive com­puter sys­tems in the home.
Over the course of two years, Goodwin and his col­leagues at the Georgia Insti­tute of Tech­nology will work with fam­i­lies in the Simons Foun­da­tions’ Vari­a­tion in Indi­vid­uals Project, or VIP. The project aims to con­nect genetic muta­tions likely asso­ci­ated with autism and other neu­rode­vel­op­mental dis­or­ders with clin­ical and behav­ioral patient profiles.

With input from the VIP fam­i­lies, the researchers hope to first iden­tify the most impor­tant types of behav­iors to col­lect, then deter­mine the best sensing sys­tems to use. They will then deploy the system—first in the researchers’ own homes with their own fam­i­lies, and then with 10 fam­i­lies with chil­dren with autism in Boston, Atlanta, and Prov­i­dence, R.I. After that, they will repeat the process with 10 fam­i­lies in New York, Florida, and Los Angeles, grad­u­ally increasing the dis­tance between fam­i­lies and researchers, and thus the amount of sup­port the researchers will be able to provide.

The second year will be devoted to data analysis, Goodwin said. Through the use of cam­eras, audio recorders, and phys­i­o­log­ical sen­sors worn and oper­ated by par­ents, the system will track a number of con­di­tions, he said, including sleep, seizures, anx­iety, socia­bility, lan­guage use, motor-​​muscle tone, and body tem­per­a­ture. In addi­tion, the researchers will be looking at gen­eral affect and devi­a­tions from a child’s typ­ical behavior.

The researchers have pre­vi­ously demon­strated that they can track these states through the use of dig­ital devices, but, said Goodwin, “This is the first time we’re going to do this with a total lay person.”

While the data col­lected will pro­vide impor­tant infor­ma­tion for researchers attempting to con­nect behav­iors to genetic, phys­i­o­log­ical, and envi­ron­mental fac­tors, it will also pro­vide a valu­able tool for fam­i­lies them­selves. Clin­i­cians can use the data to mon­itor the effi­cacy of var­ious treat­ments and changes in an individual’s con­di­tion over time.

Early diag­nosis and treat­ment have been linked to improved patient out­comes, Goodwin said. But often, because of the com­plexity of the diag­nostic pro­tocol, cases go unno­ticed or under­ap­pre­ci­ated for years. By pro­viding a low-​​impact, easy-​​to-​​use system directly to par­ents and care­givers, he hopes to one day change that.