201 magazine article from another digest

[Guest guest]

The Faces of Autism

A meaningful part of our community

By Amelia Duggan

Photos by Eugene Parciasepe Jr.

September 2006

In words and in pictures, *(201)* pays tribute to the autism community. The

time is ripe. In 2006, 1 in 166 babies born in the U.S. will be autistic.

Just 10 years ago, the ratio was 1 in 10,000. New Jersey's own growth rate

has been 400 percent higher than this national increase, translating to

approximately 1 in 50. While Bergen-specific statistics are unavailable, the

reputation of its services - both private and public - may only make

Bergen's ratio greater than the state's. Families seeking treatment have

moved here from as far away as Hong Kong.

*A DIALOGUE BEGINS*

Autism, a complex neurological disorder impacting social interaction and

communication skills, can be traced back to 1911, when a Swiss psychiatrist

used the term to describe adult schizophrenia. Then, in the early 1940s, a

doctor from s Hopkins applied the term to children who were withdrawn

from human contact as early as age 1. It was not until the beginning of the

1960s that pediatric neurologists, including Englewood resident Dr. Arnold

Gold of Columbia University, began to more precisely define the symptoms and

treatments.

It is generally accepted that autism is caused by abnormalities in the

brain. Brain scans can differ between autistic and non-autistic children.

However, the cause of these abnormalities remains in question. Theories

include genetics, environmental exposure, problems during pregnancy and

delivery, viral infections, metabolic imbalances and more. The possibility

that vaccines - and in particular, the measles-mumps-rubella (MMR) shot -

play a role continues unanswered. A 2001 study by the National Academy of

Sciences' Institute of Medicine found no link, but " could not rule it out. "

There is also no clear understanding of why the numbers are climbing.

Perhaps, it is because the medical community is now more willing to make the

diagnosis, and society is more willing to accept it. Increasingly

sophisticated diagnostics and screening may explain the rise. Greater

exposure to environmental chemicals could also be a factor.

Autism is a spectrum disorder, meaning that it affects each person

differently, and at varying degrees. No medical test exists to confirm or

deny a diagnosis; tests can only be used to rule out other causes of the

symptoms. A developmental screening - looking for " red flags " or missed

milestones, such as the ability to speak - can be applied as early as 12

months, but the behaviors that are characteristic of autism generally reveal

themselves at age 2. Only one thing is certain: The diagnosis is difficult

and long - an accurate diagnosis may take months.

Neurologists maintain that a child's brain is still very pliable and can, in

essence, rewire itself, resulting in significant progress - or even, in

limited cases, recovery. The earlier the child is diagnosed and begins

treatment, the greater the improvement.

*NO SUMMER VACATION*

Autism does not take vacations, nor is it something one grows out of. There

is no cure - only treatment. Ordinary activities, such as how to eat a meal,

brush your teeth, take a bath and sit through a haircut, need to be taught -

sometimes, through a painstakingly repetitive process. But, if these

milestones are achieved, windows and doors of possibility burst open, and

children blossom. These breakthroughs and glimpses of normal life provide

families a reason to hope, and the inspiration to press on.

New parents are filled with joyful optimism about the future of their baby.

When parents learn that their child is autistic, their dreams are instantly

shattered. Images of normal family life evaporate and are replaced with fear

and devastation. But that is a temporary state for parents who take on the

disorder with all their might and battle its debilitating effects.

Self-expression is frequently a challenge for the child with autism. Verbal

language may be limited or nonexistent. Parents and even siblings must

develop a personal system of communication. Hand signals and other nonverbal

tools, including American Sign Language, are used to convey messages. The

world outside may not understand this secret language, but those closest to

the child do. As meaningful self-expression emerges, some of the aberrant

behaviors disappear, and the child progresses and develops other life

skills.

Parents of children with autism accept that it is a long and arduous haul to

securing the services their children need to succeed. They also realize the

importance of celebrating each milestone as their children advance.

*BERGEN ON THE MAP*

The Forum School, Waldwick, was one of the first special needs schools to

emerge in Bergen. By the early 1980s, numerous local and county programs had

been added like those of the Bergen County Special Services School District,

but demand for autistic-specific services far exceeded supply.

Debra and Mark Gladstone of Alpine planted the seeds for a new school to be

led by Dr. Bridget , the therapist for their son, . The couple

joined forces with and Jim Hoppe of Wyckoff and other families and

professionals to form the Alpine Learning Group (ALG), Paramus, in 1989.

" Bridget is like the Tiger Woods of the autism community, " says Mark

Gladstone. " She is amazing at what she can accomplish with these kids. We

are so grateful for all her work in helping succeed. "

The school is now a nationally recognized leader in Applied Behavior

Analysis (ABA), a treatment which breaks down tasks into short, simple

fragments that are repeated until they are successfully completed. In one

ABA program, 21 individual tasks are involved in eating a grilled cheese

sandwich.

ALG alone was not enough to service the overwhelming demand. More private

schools emerged. In 1995, the Institute of Education Achievement (IEA)

opened its doors in New Milford. " Our daughter Kate had sleep issues for

seven years, " says Diane Lento of Oradell, one of IEA's founders. " Teachers

came into our home every night and worked with Kate so that she could apply

what she had learned in school and eventually learn to sleep through the

night. That was an enormous breakthrough for us as a family. "

IEA parent Carin Friedman of Tenafly beams when she talks about the

accomplishments her 13-year-old son, Gabe, has made at the school. " Gabe has

exceeded our expectations, " says Friedman. " I'm happy for every day with

him. IEA is an amazing place. "

Other schools have since emerged, including the Educational Partnership for

Instructing Children (EPIC) School, Paramus, in 1997. EPIC has expanded its

enrollment since moving in 2003 to a newly renovated facility, financed

through private and corporate fundraising.

Yet, despite the growing number of schools, access continued to be an issue.

Donna and Sluka of Paramus knew that they wanted an ABA-based

program for their son, Connor. All the existing schools were filled, their

waiting lists several years long. With 's help, the Slukas joined

forces with other families, like Athena and Ken of Wyckoff, to

establish REED Academy, Garfield. Following the groundbreaking work of the

Gladstones and the Hoppes, the couples developed a proposal, which was

presented to state officials, for approval of a new school. After a

year-long review process, the request was approved, and REED was

established. The school opened in 2003.

" We knew we were going to be in this for the long haul, " says Donna Sluka.

" Other groups competed for approval, but dropped out because of the

intensive process. We formed a nonprofit corporation, and took it from

there. It eliminated our feeling of helplessness. "

At all the private schools, the curriculum extends far beyond the classroom.

In some cases, round-the-clock therapy is necessary to achieve significant

results - particularly with children suffering with sleep issues, a common

problem for children with autism.

The ABA approach is not limited to the private schools. Aspects of this

philosophy have been incorporated into the public school systems throughout

Bergen. " It is wonderful to see how these children progress, " says Michele

Reale, who teaches disabled preschoolers in both integrated and special

classes at Memorial School, Montvale. " With additional classroom support,

they are able to enjoy a mainstream school experience. "

ABA is also reinforced in programs like the Quest Adult Day Care Program at

the Wyckoff Family YMCA, where ALG graduates have been able to parlay the

skills they learned in school into real-life settings.

Other methodologies, such as picture exchange, help children build language.

Floor time, through increasingly larger circles of interaction, assists the

students in ascending the developmental ladder. But, just as the path to an

autism diagnosis varies widely among individuals, there is no universal

teaching methodology that has proven successful for all who face the

challenges posed by the disorder. While capacity and quality of services at

both public and private schools has increased, the demand continues to

exceed the supply.

*MEMBERS OF THE COMMUNITY*

The common message that Bergen parents want heard is the special impact

their children have on the community.

" There are so many wonderful things to be learned from a person with

autism, " says Jim Hoppe. " These are remarkable, loving people, who enrich

our lives in countless ways. Embrace them as a meaningful part of our

society. "

Positive Reinforcement

Teachers

Compassionate, patient and dedicated are just a few of the adjectives that

describe the individuals who teach children and young adults with autism.

The teachers' eyes sparkle and their faces light up when they describe how

working with their students has helped themselves and their students grow.

The teachers are united in their love for their special students and their

commitment to helping these individuals lead independent and productive

lives. The teachers extend themselves well beyond the classroom, making

frequent home visits to reinforce classroom teaching and to help children

apply what they've learned to family life.

Ground Breakers

School and Program Administrators

Vision, extensive education and training, and even grit are essential to

establishing and operating special programs and schools for the autistic.

Can-do attitudes - coupled with academic and clinical credentials in child

psychology, applied behavior analysis, special education, research and

assessment - have helped these program administrators develop

state-of-the-art interventions and treatment. They take great pride in their

one-on-one relationships. Knowing children and young adults in their care on

a personal level keeps the administrators in tune with the individual

progress of each student.

There is strong collegiality: from developing curricula for their schools,

to sharing expertise, to providing educational consultation services, to

working with families to secure resources and find appropriate

Parent Power

Parents and Advocates

Battling and conquering social acceptance. Confronting issues that disrupt

family life. Being tolerant, patient and overflowing with compassion.

Relentlessly pursuing resources. Identifying need and creating programs.

Raising money and building schools. Fighting for government support and

pushing for expansion of services and broadened access. Most of all, loving

and adoring their children. Such are the tireless pursuits of parents.

Securing National Resources

In an era of flat funding, Rothman earned approval for an additional 10

percent in funding - for a total of $102 million in 2006 - for the National

Institute of Health. A portion is funding research on the causes and

potential cures for autism. As the uncle of an adolescent with autism,

Rothman is inspired to raise awareness and funds. " I will never give up the

fight for additional resources for research and programs. "

TEAM SPIRIT

The team faces off against autism in The Mark Messier Skyway for Tomorrows

Children. ICD uses a multi-disciplinary approach to diagnosis and treatment,

and runs support groups for families dealing with autism.

Dynamic Duo

Observe Dr. ph Holahan conducting a developmental review, and you will

be touched by his gentle and compassionate demeanor. Beloved by patients and

parents, Holahan has treated thousands with developmental disabilities,

including autism. Joined by his wife, , he has elevated the

sophistication of diagnosis through comprehensive case study and review. The

couple works closely with Bergen's public school districts to develop

individualized education for children with autism.

Recognizing the complexities of diagnosing the disorder, the Holahans, River

Vale, are patient in their reviews. At St. ph's, they treat children

from all walks of life, and feel joy in making a difference in the lives of

their young patients. ph Holahan has been recognized as the first

recipient of the St. ph's Hospital Foundation Champion for Children

award. An autism center at the hospital will open in late 2006.

he Gold Standard

Recipient of the Autism Society of America's Lifetime Achievement Award,

Dr. Arnold Gold, Englewood, has been diagnosing and treating children with

autism for more than 45 years. He is a firm believer in

relationship-centered care. His first meeting with each child is two hours

long, and he includes the entire family, so as to observe all aspects of the

child's behavior. " The success of any therapeutic regimen is the family's

life. "

Gold was instrumental in bringing the Therapeutic Nursery to the JCC on the

Palisades. A proponent of active therapy and remediation throughout life to

perpetuate brain development, Gold believes that individuals with autism can

overcome their disability.

" During my nearly five decades of practice, I have seen thousands of

children. I think of each of them as my own. I love them all, for they have

so much to teach, and so much to give. "

*n G., Age 4, Tenafly*

Unable to speak, n entered the Alpine Learning Group (ALG) as a

toddler. His progress has been so significant that, with the help of ALG

staff, he will be entering a public pre-school this fall.

*Mark , Age 9, Wyckoff*

Bowling, baking, making breakfast, biking, skiing and skating, even playing

with his dog, are among the activities that Mark has learned since enrolling

at REED Academy two years ago. Mark's mom, Athena, says that her son " loves

hugs and tickles. " He even enjoys going to the dentist, a dreaded experience

a few years ago. He has also learned how to do homework, play board games,

and read and comprehend stories. Mark enjoys managing his own schedule on a

daily basis, a benchmark move toward independence.

* Gladstone, Age 22, Alpine *

Affectionately known as " The Mayor " at the Wyckoff Family YMCA, has

been a part of the Quest Autism Foundation Adult Day Care Program since its

inception in 2005. In addition to his aqua therapy at the Wyckoff Y,

sets up lunches for seniors at the JCC on the Palisades, collects recycling

at the Alpine Learning Group and also volunteers at the Daughters of Miriam,

Clifton. Among his favorite pursuits are listening to his iPod, walking on

the treadmill and watching the movie Grease. He hits the links on occasion

for a round of golf with his father, Mark.

* & , Age 8, Paramus *

says there is no question that a special bond exists between

her twins, and . The children, who have been students at REED

Academy for the past two-and-a-half years, have learned to play together,

share toys and interact with other children. The twins have also learned to

explore their own interests. loves to dance, and has participated in

recitals at Dance Dimensions, River Edge. enjoys watching

Nickelodeon. The twins' ABA therapy is carried into the home where

programming is reviewed once a week. is grateful for the therapy and

says that the family is learning to do leisure activities together.

*Gabe Friedman, Age 13, Tenafly*

Pictured with his sister Molly

" He's happy all the time, " says Carin Friedman of her son, Gabe, amidst the

celebration of his 13th birthday. Gabe, who baked his own birthday cake for

the celebration, has two favorite activities - drawing and spending time

with his little sister and best friend, Molly, who dotes on him like a

mother hen. Gabe is sweet and kind and loves to be out and about. He also

enjoys swimming, horseback riding and going to the store. His independent

living skills are developing rapidly. Carin thanks the Institute for

Educational Achievement (IEA) for Gabe's progress. " There's nothing they

wouldn't do for my son and the other children at the school. Day and night,

they are there for us. "

*Jaimie Hoppe, Age 22, Wyckoff *

An aspect of autism is the splinter skill, an extraordinary ability in the

areas of music, art, mathematics or memory. Jaimie is an accomplished singer

who, in April of 2006, performed with the Philharmonic Orchestra of New

Jersey in the Music from the Heart Benefit Concert for the Quest Autism

Foundation. When she isn't on stage, Jaimie volunteers at the Christian

Health Care Center in Wyckoff, The Valley Hospital in Ridgewood and the

Wyckoff Reform Church. Jaimie also swims laps at the Wyckoff Family YMCA

every day, and works out with a personal trainer three days a week.

*Kate Lento, Age 14, Oradell*

Kate was a typical baby at 15 months, babbling and making eye contact with

loving parents. Suddenly, she began to regress, losing all language and

social " connectedness. " Since being enrolled at the Institute for

Educational Achievement (IEA) at age 5, Kate's language has blossomed. She

reads, and interacts with people outside her immediate family. Dinner at

Applebee's on Friday nights, weekly trips to Target or the mall, and Sunday

dinner with her grandma are among her favorite ways to spend leisure time.

Most of all, she enjoys her annual vacation at the Rocking Horse Ranch,

where she goes horseback riding. And, just like any 14-year-old girl, s

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