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Calls to Action

Families Living with Autism Panel

Interagency Autism Coordinating Committee (IACC) Meeting
October 29, 2009

Rory Stephens, age 4
Bethesda, Md.
Parents: Nora Fitzpatrick & Robert Stephens

Rory was born in October, 2005. During her first year of life, she seemed to be developing normally. She met all of her milestones and was fond of the “Wiggles” song, singing some words, doing the hand motions/dance and imitating her older sister. After her first birthday, her parents noticed that she was starting to “disappear”. Within months, these skills were gone completely. When they raised concerns to their pediatrician at 18 months, they were told “don't worry, she doesn't have autism.” A year later, Rory was diagnosed with PDD-NOS. After a brief stint at a county-based special needs program, Rory is currently enrolled in an intensive behavioral program receiving 30 hours of treatment per week making excellent progress.

Rory Stephens

Alex Gorman, age 15
Chappaqua, N.Y.
Parent: Judy Chinitz

Alex was born in March, 1994. As a baby, he had a number of digestive issues including excessive vomiting, difficulties eating solid foods and bouts of diarrhea. He experienced some regression between ages 1-2 and was diagnosed with autism after his 2nd birthday. Alex's health continued to deteriorate after he received a flu shot at 2.8 years. He required IVGG treatment for 7 years, as well as steroids and many other medications to address his immunological challenges. At 9 ½ years old, a feeding tube was recommended but instead, his mom tried the Specific Carbohydrate Diet which cleared up many of these problems. Today, Alex attends the BOCES Aim Program in White Plains, N.Y. He recently moved to a less restrictive classroom.

Alex Gorman

Alex Swartz, age 17
Danville, Calif.
Parents: Elizabeth Emken & Craig Swartz

Alex was born in August, 1992. He was diagnosed with autism at the age of 4 after two years of seeking a proper diagnosis. He was one of the first clients enrolled in the UCLA Lovaas remote program. He received numerous biomedical treatments in addition to intensive behavior interventions. Alex continues to benefit from a number of treatments including dietary supplements, gluten-free diet and pharmacological medicines. Alex is currently a junior at San Ramon Valley High School where he is expected to attend until he is 21. His interests include math, computers, and anything Disney.

Alex Swartz

Jason Ross, age 17
Litchfield, Conn.
Parent: Nancy Ross

Jason was born in April, 1992. He was diagnosed with infantile autism by a developmental pediatrician at age 3. Later that year, Jason received a PDD diagnosis from Yale Child Study Center and a similar diagnosis by Dr. Deborah Fein at the University of Connecticut and autism expert Dr. Michael Powers. At age 7, Jason started to emerge from his autism. By 11, he no longer met the criteria for autism. Today, Jason is a senior at Chase Collegiate, an academically rigorous private school in Waterbury, Conn. He is a member of the National Honor Society, an AP scholar and a 3-time varsity athlete. His future plans include attending college and a career where he can have an impact. In his words, he “beat autism”.

Jason Ross

Adam Berman, age 23
Potomac, Md.
Parents: Jeff & Diane Berman

Adam was born in September, 1986. He was diagnosed with autism/PDD at 18 months. His parents were told he was “profoundly retarded”. After years of intensive ABA therapy at a self-contained preschool, Adam learned to speak around 4.5 years. He was mainstreamed by the 1st grade and eventually graduated from high school with his peers. Adam attended the University of Maryland and participated in an honors program. Currently, he works as a paraprofessional, teaching middle school students with autism. In addition, he recently started graduate school at George Washington majoring in Special Education. Adam's plans for the future include furthering his education and working as a professor and/or researcher.

Adam Berman

Troy Cunningham, age 38
Washington, D.C.
Parents: Sondra & Tyrone Cunningham

Troy was born in May, 1971. He was diagnosed with infantile autism at the age of 2. Troy attended an Easter Seals program until age 5, the American Foundation School for Autistic Children from ages 5-7 and then St. John's Child Development Center until age 22. As an adult, Troy participated in the St. John's Community Services Adult Rehabilitation Program and PSI Adult Day Program for 15 years. Today, Troy lives at home with his parents. As a participant of the National Children's Center Adult Day Program, he received his first paying job last year and currently works 20 hours/week at Value Village Thrift Store. Troy's parents are working with several other families to find a group living situation for their adult children with autism.

Troy Cunningham