By Shannon Chisholm

ELLSWORTH — What do you do when your child takes apart the plumbing and floods the house?

Jalè French (left) and her sister, Sarah, have a special relationship. Jalè likes to make faces and have Sarah mimic them back to her. Sarah says sometimes she is jealous of the extra attention Jalè gets, but Sarah has friends with siblings who have autism, which helps. Staff photo by Denise Farwell About Asperger’s By Stephen Fay ELLSWORTH — Autism’s symptoms and syndromes are not created equal. The spectrum, as professionals call it, runs from individuals who are profoundly isolated with virtually no social interaction to high-functioning children and adults who perform and achieve in the day-to-day world despite carrying an extraordinarily heavy load of neurologically based disorders. Asperger’s Syndrome is one of the so-called Pervasive Development Disorders. (Autism leads the list.) As a condition, Asperger’s is a moving target. Many professionals consider it to be a less severe form of autism; others believe it to be a separate disorder. Asperger’s is certainly a less obvious problem, which is a mixed blessing. Unlike an autistic child, a child with Asperger’s may not have experienced language delays and may possess good language and cognitive skills. To the lay person, a child with Asperger’s seems simply aloof and uninterested in others — even unfriendly. That’s one of the problems. Children and adults with Asperger’s often want very much to fit in and take part in what everyone else is enjoying — they just don’t know how. That inability to join the group, that awkwardness, is typical of individuals with Asperger’s. They have a hard time understanding social conventions, they can’t make small talk, eye contact is hard for them, nor do they know how to read facial expressions, body language or other non-verbal cues by which the rest of us navigate. Tony Attwood, a clinical psychologist based in Brisbane, Australia, has made Asperger’s his life’s work. He led an all-day workshop July 19 in Bangor, addressing 600 teachers, special ed professionals, psychotherapists and parents, including several from Hancock County and the Ellsworth School System, which has seven children with Asperger’s. Attwood, who travels the world supervising post-graduate clinical students, lecturing and conducting research, is a polished performer and a witty speaker. He noted that individuals with Asperger’s have difficulty displaying empathy and in making friends. Often, Attwood said, they have an egocentric preoccupation with a specific topic of interest. He speculated, only half in jest, that “Star Trek conventions are secret reunions for people with Asperger’s Syndrome.” The condition was first described by Dr. Hans Asperger, a Viennese pediatrician who, in the 1940s, observed autistic-like behavior in boys of normal intelligence with normal language development. He observed impairment in verbal and nonverbal communication. People with Asperger’s, Attwood said, are in their social interactions like French drivers: they appear to ignore the signs the rest of us see and, as a result, have accidents. Attwood said research and study have contributed hugely to the general understanding of the condition. Among his findings: * Individuals with Asperger’s have “a different form of wiring, but not a defective one.” * Some with Asperger’s develop remarkable talents that head to success. * For reasons yet to be established, the condition is much more common in boys. * Because it can appear as a thought disorder, Asperger’s has been misdiagnosed as schizophrenia. * Individuals with Asperger’s esteem intelligence and are keenly wounded and insulted if called “stupid.” Because of their intelligence, medications to help them cope can backfire by blunting their clarity of thought. * Children with Asperger’s are more comfortable in the physical world than the social world. At recess, they are the ones who will study fences, bugs and trees instead of playing with others. * They are prone to “devastating loneliness,” depression and thoughts of suicide. They tend to be vulnerable and gullible. * Effective treatment and interventions include cognitive behavioral therapy and counseling. These are individuals who need friends, social success and tranquility. Attwood also said Asperger’s is on the increase and may be the “next stage of human evolution.” For all its awkwardness and pain, Attwood said Asperger’s is “a gift” that, handled well, can be an avenue to a rewarding life. Information: tonyattwood.com.au

What about when he opens a window, jumps and runs — even though you’ve already screwed shut every window in the house?

Or when he takes off through the woods and you find him running down the middle of Bridge Hill Road, cars narrowly missing him?

Alice French will tell you that you put him in a place where he will be safe, even if it is six hours away from his family.

French is the mother of Jack and Jalè, 10-year-old twins diagnosed with autism at the age of 2.

The twins, until the age of 5, received a kind of special education called Applied Behavioral Analysis at the May Institute in Freeport.

According to Jean Marie Ivey, the twins’ grandmother, the institute’s technique focuses on one skill, then uses that skill — when mastered — as the foundation for the next skill.

 At age 5, the twins’ education became the responsibility of the local school department.

Jalè is enrolled in a special education class offered at the Bryant E. Moore School in Ellsworth. She has a supervisor and an individualized program tailored to her needs, said French.

However, Jack has been sent out of state to live in a residential home for children with disabilities.

French said she had to send Jack to the May Institute branch in Chatham, Mass., in order to keep him safe and get him the Applied Behavioral Analysis education he needs. The Massachusetts facility was the closest one for a child Jack’s age.

Initially, and for his own protection, French said Jack was admitted to a psychiatric hospital in Bangor. Then he entered the May Institute in Massachusetts where he receives the education he needs.

His family and friends would like to bring Jack back home.

Ivey and French have formed a group called Justice for Autism with Community and Kindness (J.A.C.K). The group’s goal is to establish a residential facility in Hancock County for the treatment and education of children with autism.

According to the Autism Society of America, autism is a complex developmental disability that typically appears during the first three years of a child’s life.

It is the result of a neurological disorder that affects normal development of the brain in the areas of social interaction and communication skills.

The members of J.A.C.K. — there are about a dozen — want a full residential and day school that offers special education teachers and full-time behaviorial specialists who would administer various therapies that include art, music and physical therapy.

J.A.C.K. has put together plans for a pilot program that will run Aug. 20-27. The pilot would be a sample of a fully operational program that the group would like to see in Hancock County and designed to serve children with autism, said French.

The program’s purpose would be to provide a safe environment for children with autism to live and learn while remaining close to their families and friends.

According to French, the projected cost of the weeklong pilot program is $15,000. That cost would include housing, food, supplies and staff salaries.

The behaviorial specialists would be responsible for the child’s residential care and programs, such as self-care and social interactions with housemates.

Education technicians would be responsible for carrying out the child’s educational programs and helping with therapeutic interventions, said French.

A special education teacher would supervise all educational technicians and behaviorial specialists and supervise all programs during school hours.

A certified behavior analyst will supervise all programs and program staff. A program coordinator will work with the entire staff to ensure all programs are appropriate and that all services are being provided in the child’s best interest. A social worker will work with the child and family members to make sure that all services recommended are being provided.

The group hopes to raise money for the pilot program through private donations.

J.A.C.K. members are also looking for a three-bedroom home to rent from Aug. 20–27 to house the pilot program.

French is working on fund-raising for the project and is setting up benefit concerts with two big bands: Sentimental Journey and the Acadia Big Band; though no dates or venues have been announced.

According to the Maine Department of Education’s Web site, as of December 2003, there are 43 children in Hancock County ages 3-18 who have been diagnosed with autism.

According to Lesley Snyer, assistant special education director with the Ellsworth Education Cooperative, there are 18 children with autism registered for enrollment at Ellsworth schools this fall.

Snyer said the children have been provided with an appropriate education since she has been with the school system for the last six years.

She added that the programs for children with autism have improved since David Celiberti, a consulting behavior analyst, joined the school system in January 2004. Celiberti is contracted for the coming year to be on site three days per month, every other month.

French stressed the need for a residential educational facility in Maine for children with autism over the age of 5.

“We are looking for a cost-effective way to take care of our own children,” said French.

Information about J.A.C.K. or the pilot program: Alice French, 664-0909. Information about autism:  the Autism Society of Maine (800) 273-5200 or online www.asmonline.com.