By Mike Lauterborn
(front page of June 16 Fairfield Sun)
Bridgeport, CT – What happens when autistic children become adults? It is an intimidating question that families of adults with autism face every day. The reality is that there are very few services to assist adults with even mild autism, and very few opportunities for them to further their education, work and socialize – in short, to live full, productive lives.
To address the situation, Monroe resident Pat Paniccia founded IDEA for Autism, Inc. and a dedicated private facility at 515 Washington Avenue in Bridgeport. At an open house hosted Sunday evening, June 5, she spoke about her inspiration, outlined programming and introduced clients and associates that shared related stories.
Clearly a need
“I had always been on family services boards and involved with Easter Seals, and have friends with grandchildren that have autism,” said Paniccia. “In talking with them, I learned their major concern was that, after 21, no services are available. Services are only federally mandated until 21, unless the person graduates at 18, then services end. And in Fairfield County, there was nothing to serve autistic adults. On top of this, the medical community had forecasted that 500,000 autistic young adults will graduate from high school and be without programs in the next five to ten years.”
Adopting the acronym IDEA, which stands for Individual Development and Education for Autism, Paniccia founded the non-profit in April 2008 with a mission to provide services for young adults and adults on the autism spectrum. Initially, she rented the Washington Avenue property, a three-level private home converted to house classrooms and administrative offices, then bought it in December 2010. Established to serve all of Fairfield County, it currently accommodates 10 adults from areas that include Shelton, Stratford, Fairfield, Bridgeport, Norwalk and Westport. Eight clients are male and the age range among all is mid-20s to mid-50s.
“No two people with autism are the same,” said Paniccia. “They range from high functioning individuals with Asperger’s Disorder, characterized by social and behavioral challenges, to being non-verbal and unable to communicate. Because of the wide range of needs, programming here is individualized.”
Upon registering, initial clients were evaluated by IDEA’s team of clinicians, which include two psychologists, two occupational therapists, a nutritionist/cook, a physical trainer, a career counselor and a special education teacher.
A big draw was the cooking program IDEA offered. “To clients, it seemed like a simple starting point or activity,” said Paniccia. “But to us, it represented the opportunity to get them to socialize, work as a team, learn about nutrition, find independence and form friendships. And what we would cook we would then serve and they would eat together.”
A success story
When clients were not cooking, they were meeting with the various team members as necessary or desired, to work toward their objectives. This included partaking in instruction on integrated job/career counseling, resume writing, interviewing skills, role-playing in an office environment, social skills and independent living.
A good illustration of how the program has served its clients is Richard Hudson, 36, who wanted to go back to college for a computer science degree, find a girlfriend and land a best friend. “He met with the psychologist and the career counselor,” said Paniccia. “The job coach walked him through an application process at Housatonic Community College, to help him successfully enroll in a math program, which he just completed. Now he’s applying for another course in September.”
She continued, “With regard to his romantic interests, Richard met with the psychologist, who assisted him with correct social behavior. The men, as a group, meet to talk about men’s stuff, like romantic and social relationships, too. In this area as well, Richard has succeeded in attaining a girlfriend, whom he’s been seeing for a couple months.”
“In addition to those achievements,” Paniccia said, “he has landed a volunteer position at Bridgeport Public Library. These are huge steps for him. When he first came to us, his face was buried in a book, he interacted very little and wasn’t on time. We used to have to call him constantly to motivate and remind him. Now he gets himself up on time and gets himself to classes and his job on time. His girlfriend lives in Hartford and he coordinates travel there by bus himself.”
Attending IDEA’s open house and speaking about her related experience with autism was Dr. Laura Lustig, founder of The New Learning Therapy Center in Southport, author of “Attics in the Mind” and mother of an adult with autism. She addressed the gathering, which numbered about 50 parents, supporters and local community representatives, including Bridgeport Mayor Bill Finch.
“Family is the basic building block for a young person and, for an average family, this is a given,” she said. “But what happens when a baby is born that doesn’t respond to its mother and is developmentally stunted? The family needs to consider the complications of raising a disabled child. Families can become overwhelmed. Pat has created an extended family that helps autism students in need.”
Lustig said the incidence and prevalence of autism has increased dramatically, to 1 in 110 births. “The economic impact is huge,” she said. “It’s imperative that changes be made to accommodate needs. There have been many improvements made in special needs populations, but little has been done to meet needs when they become adults. They need the support of the whole community to lead productive lives.”
Lustig added that when she wrote her book, she felt that she was speaking for other families like hers, and wanted as normal a life for her son Jessie, now 48, as possible. “My book tells about our struggles overcoming impediments and Jessie’s devotion to family, which has brought out the best in us.”
Lustig wished IDEA has been around when her son was graduating from high school. “It would have lessened our family turmoil and helped him assimilate into society,” she said.
Mayor Finch recognized the critical nature of the program and the fellow support of Congressman Jim Himes’, who helped the organization get a $225,000 grant. “Do the math,” he said. “If 1 in 110 is diagnosed with autism, in a city of 145,000, that’s 14,500 people that could have the condition,” he said. “I’m proud to have IDEA in Bridgeport and glad to have Congressman Himes’ help. The productiveness of IDEA’s clients is a boost to our economy. No more segregating, no more institutionalizing. It’s all about helping people live a complete life. IDEA is a great fit for this city. I’m so proud of the Paniccias.”
As for Pat Paniccia, the experience has led her on a fulfilling new journey. “This has been life-altering for me, and I’m happy to see all the progress that’s been made in a year through our services.”
Nowhere to turn… until IDEA
A Bridgeport resident, IDEA for Autism client Richard Hudson has high-functioning autism. He tells a sad tale that brightened dramatically when he found the organization, a non-profit helping autistic adults.
“I was raised in New York City, and began to have issues in 4th grade,” he said. “My school did not have a program for someone of higher-than-normal intelligence with behavioral problems due to lack of social skills. I was placed in a class with emotionally disturbed children – psychopaths, sociopaths, abused children and abusers – and became ‘prey’. I was bullied and persecuted.”
In junior high school, he was placed in a similar situation and, by the time he reached high school, he had essentially given up and wanted to quit. “Teachers just didn’t know what to do with me,” he said.
“When I was 24, my mother and I were living in an illegal apartment due to lack of work opportunities, and the place caught fire,” he said. “We became homeless.”
Through Dan Gilbride, an autism advocate, Hudson started to receive services from the Dept. of Mental Health. Social worker Jackie DeCoit also went “above and beyond the call of duty.” Hudson connected to the Kennedy Center, too, though they didn’t have the help he needed, he said.
“I spent years calling agencies and groups seeking help, without avail, until IDEA, which I found online,” he said. “I became one of the first members of the program. It helped me immensely. I had someplace to go every day, started dressing better and got help organizing my finances and loans.”
Hudson said there are a lot of people out there in the autism spectrum that would benefit from IDEA. “And every dollar given to this program will not only help the government save money by getting autistic adults off public assistance and helping them become more independent, but they will become full contributing members of society, too. This is fiscal conservatism and social liberalism at its finest.”
For more information about IDEA, visit www.ideaonline.us or call 203-334-IDEA.