Seven-year-old Torin Phillips and his 6-year-old sister, Kaia, are on a mission to overcome the limiting effects of autism. The two siblings, who live just outside of Boston in Forestdale, MA, receive intensive applied behavior therapy (ABA) from the Center for Autism and Related Disorders (CARD). Torin and Kaia’s unique and uplifting stories are featured in CARD’s newest episode of “Mission Possible: Portraits of Hope.”
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At 18 months, Torin was nonverbal, did not point or answer to his name, and had little interest in toys. At the age of 22 months, he was initially diagnosed with pervasive developmental disorder not otherwise specified (PDD-NOS), according to the DSM-IV criteria, a diagnosis that is used for “severe and pervasive impairment in the development of reciprocal social interaction or verbal and nonverbal communication skills or when stereotyped behavior, interests, and activities are present.” As it became clear that Torin was profoundly affected by autism, and his diagnosis was changed to PDD by the time he was three years old.
“Torin is a medically complicated kid, just as many kids on the spectrum are,” says Torrin’s mother Kerri Phillips. “We now know he has Crohn’s and auto immune issues and that he appears asymptomatic many times even when something is wrong. Torin can’t overtly communicate his pain to us. Before we knew of the Crohn’s, he went seven straight months with little to no sleep. He would whoop and bang his head all night. He was never violent, but his need for all the lights on in the house and all the doors closed 24 hours a day was debilitating. It was stressful and difficult to take him anywhere out of the house including school because his undesirable behaviors, which we now know were caused by pain, would spike. We stopped participating in family holidays for a time, didn’t visit friends, didn’t invite people over, and couldn’t leave him with a babysitter. We felt powerless.”
“In spite of this, we were doing ABA therapy with him with local providers, but initially we couldn’t get even half of the 40 hours per week that we knew the research-based, peer-reviewed studies demonstrated would produce the best outcomes for a kid like Torin. At that time, none of the local Massachusetts agencies that we tried worked from a curriculum specific for kids with autism, had an intensive formalized training program for staff, or would help us track his medical treatments for Crohn’s, autism and autoimmune issues and cross-reference the treatments with his progress or setbacks to help us understand what treatments were working. Then, we found CARD. The first weekend we started with CARD, I still remember being completely awed by how unique, caring and all-encompassing their approach was to Torin’s development and our involvement as a family. We had a means to get control of the autism; until that time, the autism was controlling us. I remember that my husband and I held back tears of relief one night because, after just a short time, it was so completely evident that this program, the people, and the training were game changers for our family. CARD gave us hope again.”
When Torin was three-and-a-half, the Phillips started a CARD 46-hour-per-week intensive treatment program for Torin and began working with three CARD-trained therapists. Their local school now uses Skills, the CARD curriculum, and uses CARD eLearning to train school aides. Torin is now in school and, through the CARD program, has learned 250 sight words. This past March, he began sounding out words for the first time on his own, and he now takes part in the regular education reading group in his class. While he still has limited language, he requests what he needs and states his preferences, writes his own name, and types and prints out other work on his iPad. He has also learned to play 10 songs on the piano including “God Bless America” which he plays for his class while they sing. He also just received a Golden Eagle award at his school for best behavior in his classroom and his reading work.
Torin’s sister, Kaia, was observed closely since birth. Kaia seemed to be developing at a typical rate; she pointed and responded to her name when called. In fact, her parents thought she might be gifted because she knew at least 100-200 sight words/labels by the age of two. However, CARD pointed out that, in spite of her advanced decoding, her ability to link two words together into approximated sentences or follow multi-step direction did not exist. Kaia was diagnosed with PDD-NOS at 18 months. She began receiving 20-25 hours of applied behavior analysis (ABA) therapy from CARD immediately. At age three, she was also given a clinical diagnosis of Hyperlexia (a precocious early ability to read/decode and in most cases accompanied by difficulty with comprehension and encoding). Kaia is currently a social butterfly, and her teacher describes her as a very caring and kind student. She attends full-day kindergarten with minimal assistance. She still receives 15-20 hours ABA therapy with CARD. Her family believes it is likely that her diagnosis will be removed within the next few years.
For more information about “Mission Possible: Portraits of Hope,” visit http://portraits-of-hope.centerforautism.com.