The Importance of Getting an FASD Diagnosis – One person Can Make a Difference

Ric Ianolino has worked with at-risk children and their families since 1968 in the Lower 48 and in Alaska. He served in roles as treatment director for the Bethel Group Home and regional trainer for the Yukon-Kuskokwin Health Corporation until a ride-along with Juneau Police Department Sgt. Ben Cornell changed his life.

Ianolino’s experience led to a professional understanding that, ultimately, urged him to the opening of the first Fetal Alcohol Spectrum Disorder multidisciplinary diagnostic clinic in Juneau. The endeavor was financially supported by the Central Council of Tlingit and Haida Indian Tribes of Alaska and Tribal Family and Youth Services.

The clinic provided services from January 2004 through June 2012, when the clinic closed its doors due to diminished funding. In November 2013, REACH Executive Director Millie Ryan expanded the organization’s services to serve people with developmental disabilities. A new FASD clinic was established and is currently housed in and administered by REACH. According to Ianolino, the clinic exists today because of the support and leadership of both CCTHITA and REACH. I personally would also include Ianolino, as he has been the inspiration underlying the effort.

During his early work with children, he began to see children with massive problems both at home and in school. He observed negative behaviors that tended to repeat themselves, such as lying, stealing, inability to focus, forgetfulness, difficulty with organization, time and schedules, and a tendency to be overly-trustful and easily taken advantage of. According to Ianolino, the kids who appeared most damaged were physically identifiable. Those with an FASD, however, suffered additional harm because people misunderstood their behaviors.

He later learned that many families he worked with in Alaska and the Lower 48 were heavy alcohol consumers. At the time, there was no diagnostic connection to Fetal Alcohol Effect and no services or support since there were no facial features that justified the diagnosis as a disorder. Fetal Alcohol Syndrome, on the other hand, had distinctive facial features, making a diagnosis and services more likely. Today, FAE is no longer a designator, and FASD is an umbrella term that includes FAS and references over 250 different conditions that almost always affect the way a brain functions. Individual brains are affected differently depending upon the stage of pregnancy the alcohol consumed. Because FASD is an invisible disorder, those who are affected often have incorrect diagnoses, which leads to ineffective treatment. Children affected struggle to meet ordinary expectations, and the struggles and repeated failures continue throughout adulthood if support isn’t received.

When Sgt. Cornell invited Ianolino to ride with him as part of a JPD citizen-observer program, he was expecting a ride along. It was, however, primarily a walk along on a very cold and blustery evening.

“I’m not a night person,” Ianolino asserted, but it was a night he would never forget.

They were called out to rescue homeless teenagers. They stopped at all the downtown bars. When Cornell received a call that a group of kids were inebriated and climbing the cliff behind the State Office Building garage, they immediately proceeded to the SOB, where Cornell climbed the cliff to retrieve the youth only to discover their intention was to jump off the cliff and commit suicide. The teens ranged in ages from 14 to 17. The children were brought to the police station, where they were gently interviewed. Ianolino was devastated by their stories and their various stages of drunkenness. What the teens shared was tragic, and he had no idea of the massive number of homeless youth in Juneau. A few were arrested and were sent to Johnson Youth Center, others were taken to a safe shelter — all were homeless.

Shaken, Ianolino went home that night but couldn’t sleep. The next morning he phoned Shirley Jones, who, at that time, was a specialized foster parent and asked if she wanted to co-chair a community coalition on homeless youth in Juneau, which became known as the “Youth on the Street” coalition. She had similar experiences regarding foster children’s troubling behaviors. Sharing common concerns regarding homeless youth, Peter McDowell contacted Ianolino and Jones; and the McDowell Group funded a survey and report entitled “Juneau Youth on the Street” in 1989. They concluded that there were 100 to 150 homeless youth on any given night in Juneau.

These kids, according to Ianolino, had long histories of alcohol in their families. They had the same profile as many of the children and youth as those with FASD. Some were being molested while others were asked to leave by parents/foster parents who could not understand nor tolerate certain behaviors. Some lived with drug dealers in party houses and ran drugs; others couch surfed, lived on houseboats, or broke into homes when families were away. Some were hustling and stealing food and clothes just to stay alive. When caught, some developed strategies to be placed at Johnson Youth Center because it was a warm place with food, medical services and kids their own age.

Subsequently, Ianolino learned from a school psychologist of a study completed by Dr. Ann Streissguth at the University of Washington that demonstrated one-third of all those diagnosed with FASD were homeless. This confirmed his suspicion that the behaviors he had seen repeatedly with children were connected to FASD. He was now convinced without diagnosis and intervention, children with FASD would always be at-risk for abuse and eventually ending up in the justice system and adult prisons.

The multi-disciplinary diagnostic clinic received a contract from the Department of Health and Social Services to fund 75 percent of the start-up for the clinic, and Ianolino was hired as its coordinator. From there the first diagnostic team was formed ranging from psychologists to therapists and medical professionals.

Team members either volunteered their time or their agencies offered the service as an in-kind donation. They were the largest team ever to be trained at the University of Washington at that time. Their multi-disciplinary approach to diagnosis resulted in not only accurate diagnoses but also identified the strengths and deficits of the individuals and families being assessed. As a result, meaningful intervention plans for relevant services and supports were effectively created.

When the clinic was forced to close its doors due to funding deficits, Ianolino did not give up. He and a committee of volunteers continued to work tirelessly to obtain an agency to house and administer a diagnostic clinic. REACH hired Suzanne Curtin to coordinate the new FASD Diagnostic Clinic, and the new diagnostic team was put into place. The first diagnosis was completed in October 2013.

Ianolino continues to advocate for families, facilitate training and consult with families and agencies in Alaska. He, of course, would love to cite every person who has made this worthy child-support system possible. We, however, would like to thank him.

• Alex Pastorino is a retired educator and mediator. She is a community advocate for families struggling with FASD.

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