National Autism Awareness Month:
The Challenge of Preparing for the Future
by Lauren Piscitelle

With the arrival of National Autism Awareness Month, we have the opportunity to reflect on the growing need to understand and face a challenge that is affecting many families. The Centers for Disease Control and Prevention’s (CDC) most recent data shows that 1 in 110 children have an autism spectrum disorder. This month, there are a variety of ways to take action, whether it’s wearing a puzzle piece (the symbol of autism), becoming more knowledgeable or just spreading awareness.

In this space we’ll be sharing a story about a local family whose son has autism, and how they are preparing for his future.

Autism Spectrum Disorders (ASD) are a group of developmental disabilities causing major social, communication and behavioral challenges appearing during the first three years of life. The CDC has learned that no single factor explains the changes in identified autism spectrum disorders prevalence during the time period that was studied.

The Autism Spectrum consists of three types of disorders. People with Asperger Syndrome typically have milder symptoms including social challenges and unusual behaviors and interests. Those diagnosed with Pervasive Developmental Disorder-Not Otherwise Specified usually have fewer and milder symptoms than those with Autistic Disorder.

Autistic Disorder is what most people think of when hearing the word “autism.” Symptoms linked to this type of autism may include unusual behaviors and interest in objects or specialized information, reactions to sensations or ways of learning. Furthermore, some signs to look for include: lack of or delay in spoken language, repetitive use of language and/or mannerisms, little or no eye contact, lack of interest in peer relationships, lack of spontaneous or make-believe play and persistent fixation on parts of objects.

There is still no explanation about the causes of ASDs. There are many studies about different risk factors, yet the cause is still unknown.

When Jim Lyman and his then wife, Alicia, found out that their 8 year old son, Eli, had autism, they didn’t know anything about the developmental disorder and spent a long time trying to grasp an understanding.

They learned that there was just not enough information out there about autism — the Internet was just becoming a go-to place for answers.

When Alicia saw Come Back Jack — a highly informative documentary that chronicles the journey of two parents responding to the autism diagnosis of their son, Jack — they decided to meet with Dr. Arnold Miller in Boston, the same doctor that worked with Jack. “It was an enlightening process for us,” Jim Lyman said. Although they did not ultimately forge ahead with Dr. Miller’s method, it opened up new possibilities and gave the Lymans new ideas for treatment.

In 2000, around the time Eli was diagnosed on the autism spectrum, he was attending school in a different district and the Lymans looked to former State Representative Howard Klebanoff for help. Klebanoff is nationally recognized in the fight for special education and the educational rights of students. There was a new program available for Eli to try called Project Learn, but the Lymans felt, once again, that the program was not fit for him.

The family learned that different programs can yield a wide variety of results. They eventually enrolled Eli into The Gengras Center in West Hartford. The Center is a unique, special education program for elementary, middle and high school students with intellectual, developmental, learning disabilities and related behavioral challenges.

Lyman felt The Gengras Center was a “phenomenal program.” When Eli began attending the Center, there were only eight children on the autism spectrum in his program. Three years later, one-third of the population at the Center was on the spectrum.

Eli made great progress, however the he 45-minute bus ride to the program was challenging so they began searching for a new program.

The May Institute in Massachusetts, one of the country’s largest concentrations of clinicians with expertise in autism, became the final piece to completing Eli’s educational puzzle.

It was a big decision for Alicia and Jim to enroll Eli. “There were hard feelings,” Lyman said. “We thought, ‘Did we do the right thing?’ There was a lot of guilt, but after two months, we realized we did do the right thing.”

Eli’s program provides comprehensive individualized services, affording each person served the opportunity to achieve their greatest level of independence.

The national unemployment rate for adults with ASDs is a staggering 88 percent. This astounding fact and knowing that Eli had only five years at the May Institute, motivated Jim Lyman to begin thinking about his son’s future. Being part of a family that is known for its farms, Lyman began a quest to find out what opportunities there could be for Eli and others like him. Lyman went to different parenting groups and began to find a common denominator: the farm environment. This vocational opportunity was appealing to Lyman, and something he was comfortable with — he currently works in farm insurance.

During World Autism Awareness Day in 2008 at the State Capitol, Lyman ran into Julie Hipp, an old friend and the board president of the Connecticut Autism Spectrum Resource Center (www.ct-asrc.org) in Wallingford. She loved the idea of a farm employing by autistic adults because she also has a son on the autism spectrum. Hipp promised to help Lyman as long as he wrote down a business plan. As Lyman and Hipp were reconnecting, Lyman’s college friend and client, Tom Pinchbeck was ready to close his rose farm due to the competition of overseas operations. Lyman told Pinchbeck that he couldn’t close the farm because he had an idea that would would reposition his crop as “caused-based.” The two met and Pinchbeck was ready to take on the vocational program.

Hipp contacted Ability Beyond Disability, a non-profit organization located in New York and Connecticut. Coincidentally, Tom Fanning, president and CEO of Ability Beyond Disability (www.abilitybeyonddisability.org), was working on a five-year strategic plan that would provide new possibilities for providing support to twice as many individuals with disabilities. “All the pieces came together,” Lyman explained.

Ability Beyond Disability approved $360,000 in 2009 for a new vocational program called Growing Possibilities. The program is dedicated to growing independence in the business world for individuals with autism and other disabilities. Its first business endeavor is Roses for Autism at Pinchbeck’s Rose Farm in Guilford.

The collaboration between friends and associates resulted in Roses for Autism at Pinchbeck’s Rose Farm in Guilford. Operated by Growing Possibilities, and supported by Ability Beyond Disability and CT-ASRC, the program not only provides individuals on the autism spectrum the chance to learn the skills necessary to maintain meaningful employment, but also serves as a model that can be replicated nationwide to develop unique opportunities for them as a whole new competitive workforce.

From cutting roses in the greenhouse to creating bouquets in an assembly line, and from packing and delivering orders to even cleaning the farm’s wood burning boiler, the 40 percent of employees on the autism spectrum are, as Hipp puts it, “learning by doing.”

“Children and adults on the autism spectrum learn best by errorless teaching and experiencing many situations,” Hipp said. “In school, a skilled teacher facilitates the linking of theses experiences so the child on the autism spectrum learns how to generalize skills and builds a broad array of experiential antecedants.”

The goal of Roses for Autism is to provide jobs, training and support for 25-50 individuals on the autism spectrum within a transitional program. The objective is for employees to learn the skills needed to maintain meaningful employment and move into other businesses.

Hipp continued, “One of the challenges with autism is the tendency to ‘chunk learn,’ which means that the person learns the task in the situation that is experienced and has difficulty applying the concept to a similar situation. Therefore, more experiences and ‘linkages’ can be an important piece in the learning mix.

“Roses for Autism not only provides a transitional vocational opportunity but another learning environment so that adults on the autism spectrum learn the social implications of working and the hidden ‘curriculum’ of work. The more integrated experiences the better to teach generalization of both technical and social skills.”

Roses for Autism is just a model that will hopefully prove that autistic adults can work as part of a viable workforce. If more and more farms begin using this model, the 88 percent can get knocked down by a lot, assured Lyman. And for a parent of a special needs child, it provides a great sense of relief.

It was a challenge when Jim and Alicia had first learned that Eli had autism. “There are stages you go through like denial and frustration,” Lyman said. “There’s a point after awhile where you are driving so hard that you are alienating others around you.”

“Reach out to groups,” Lyman advises parents. “There are people that understand where you are coming from. Afterwards, you understand it, take a step back and accept it.”

Lyman also suggests that parents research a Special Needs Trust. After putting a Special Needs Trust in place and funding it, he was relieved knowing that Eli’s resources will be managed properly and he will still be eligible for public assistance benefits.

No matter what, Lyman reassures, “The opportunities do show up — you don’t have to build it all in one day.”

Pinchbeck’s Rose Farm is located at 929 Boston Post Road in Guilford. To order flowers, call 203-453-2186 or visit www.rosesforautism.com.

If you would like to speak to Lyman about getting involved, donating funds, or to ask for advice (even
anonymously), you may contact him at 860-662-1007 or james_lyman@farmfamily.com.

The Internet has become a commonplace to look up information about Autism and Autism research. Here are a few website recommendations:

Autism Society of America is the nation’s leading grassroots autism organization, existing to improve lives of all affected by autism. Learn more at www.autism-society.org.

Autism Speaks is the nation’s largest autism science and advocacy organization, dedicated to funding research into the causes, prevention, treatments and a cure for autism; increasing awareness of autism spectrum disorders; and advocating for the needs of individuals with autism and their families. Learn more at www.autismspeaks.org.

Ability Beyond Disability is a not for profit organization that was founded in 1953 by a group of parents who wanted a better life for their children with disabilities. They have spearheaded new initiatives and pilot programs in Connecticut and New York. Learn more at www.abilitybeyonddisability.org.

The Centers for Disease Control and Prevention’s site, “Learn the Signs. Act Early,” offers free materials, new data and more resources for parents, healthcare providers and early childhood educators. Learn more at www.cdc.gov/actearly.

CT Autism Spectrum Resource Center works to help those on the autism spectrum through support, recreation and education to work toward the goal of leading full and productive lives. For more information, visit www.ct-asrc.org.