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JUNEAU - Many parents of adopted children are aware of alcohol abuse among their child's biological mother-often, a birth mother's drinking problem is the primary reason she puts her child up for adoption.

What adoptive parents don't know is how their and their child's lives will be forever scarred from the alcohol consumption of the birth mother. If Fetal Alcohol Spectrum Disorder (FASD) is present in a child, they may begin to develop behavioral disorders in their early years, in turn causing a struggle in their educational career. Parents and teachers may hope that the child will simply grow out of their problematic behavior, but one does not simply grow out of FASD-it's unchanging, permanent brain damage.

How does one spot an invisible disability? That's the purpose of the Juneau FASD Diagnostic Clinic. The clinic provides first-of-its-kind FASD diagnosis through a partnership with several local organizations and thanks to the work of over a dozen volunteers, whose time and expertise are donated to provide hope for those who believe they or someone in their family may be affected by FASD.

Juneau's clinic is one of about a dozen others in Alaska. Ric Iannolino is the coordinator, holding the clinic's only paid position.

"We're on a shoestring holding on," Iannolino said. "If there was money, we could expand. But everybody's volunteering and we can't make the days any longer."

The clinic is partially funded by the State of Alaska Office of Prevention and Early Intervention through a FASD Diagnostic Clinic Provider Agreement. Additional support is provided by Central Council of Tlingit and Haida Indian Tribes of Alaska, which serves as the lead agency for the clinic.

The clinic's interdisciplinary diagnostic team is made up of physicians, psychologists, speech and language pathologists, physical therapists and psychiatrists, all of whom personally donate their time or participate on time donated from the organization with which they are affiliated. The team includes members of the Juneau School District, the SouthEast Alaska Regional Health Consortium, Bartlett Regional Hospital, Glacier Pediatrics and neurologist Dr. Susan Hunter Joerns. Support is also provided by a number of individuals, community organizations and agencies.

Other team members, called parent navigators, participate in an equally important part of the diagnosis-visiting clients at home. Prior to the clinic visit, a parent navigator spends time with clients to observe their behavior, makes note of any changes to their home environment or their diet that could be of benefit to the client, and teaches family members to properly handle difficult situations that stem from FASD. As the only team member who visits a client's home, the information they bring to the team is very valuable and assists the medical professionals who they work alongside.

Sandy Fiscus, a parent-navigator who worked in the area of speech and language with the school district for 24 years, said the team's strength is in its variety.

"A lot of brain injuries look similar from the outside," Fiscus said. "That's why it's important to have this clinic where you have people who know about a lot of different areas and can work together to pick out the FASD. It really is a group that respects everyone, regardless of what their contributions are."

"We're all individuals in our expertise, but we come off as a team," Iannolino said.

Due to budgetary and personnel limitations, the team can only diagnose two clients per month. Preliminary record gathering and preparation is completed over several months, culminating with a one-day diagnostic clinic. On that day, the team meets with two clients for approximately four hours each. By the end of the session, clients leave with a diagnosis and recommendations in hand. Since opening, the clinic has worked with clients from ages 2 to 49.

In order to make the most accurate diagnosis, the team gathers records from doctors, schools, service providers, families and any other parties who may be able to offer relevant information to a client's case.

"It's really a time consuming process," Fiscus said.

A family member of a client who was diagnosed at the clinic said that though the diagnosis process can be painful, it is the best chance a person with FASD has at improving their life for the better.

"The questionnaire is such that they need to have information that is so broad that it touches all the areas that are painful," said the family member, who asked to remain anonymous. "I would not have done that had it not been for someone sitting right next to me asking me the questions, filling out the paperwork and handing me the Kleenex. As a (family member), you relive those years and you relive the trauma, the hurt and pain as well as the successes."

"It's a long, long process of information gathering," Fiscus said.

People with FASD who aren't diagnosed as children often live much of their lives without knowledge of their disorder, subsequently developing many secondary conditions-problems that occur as a result of the conditions with which they were born.

Secondary conditions can include mental health problems, a disrupted school experience, trouble with the law, inappropriate behavior, drug and alcohol problems and problems with employment. Many secondary conditions eventually lead FASD sufferers to incarceration.

"Once you get incarcerated, that's another social stigma," said the family member. "Many important people in (their) life decide not to socialize with (them). I am basically the only family that acknowledges (them) as being valuable."

A diagnosis can serve as the beginning of understanding and provide new hope for improved quality of life for those affected by FASD, Iannolino said.

"You can't change the brain damage," Iannolino said. "You have to change the environment-that includes other peoples' understanding and attitudes."

With a diagnosis early in life, a person with FASD can develop a support system in their families, schools and workplaces to help them grow and prosper in spite of their disability. Even though some have a late start, there is still time to implement positive changes in their lives.

"Getting a diagnosis has been very helpful," said the family member. "The younger the person can be diagnosed, the better. But it's never too late either. It's better to know what you're dealing with than guessing."

With the help of the clinic, family members can assist their loved ones with FASD in ways that will be of the most benefit to both of them.

On the outside, a person born with FASD may seem like any other child or adult. But the birth defects, caused by brain damage as a result of prenatal exposure to alcohol, are often invisible to the untrained eye. The pain caused by the disorder is commonly just passed off as bad behavior.

"If I understand someone only has one leg, I'm not going to ask them to run across the room," Iannolino said. We ask people with brain damage to do things that they can't do all the time. We don't do it out of meanness; we just can't see it and we don't know they're damaged."

According to Iannolino, North American statistics point to Caucasian women between 25 and 35 with an average income of $60,000 per year as the most likely demographic to have a child with FASD. Iannolino believes that over 40 percent of incarcerated men and women suffer from the disorder.

"Doctors should ask expectant mothers if they have been drinking," Iannolino said. "We should ask it all the time. It shouldn't be something that we're embarrassed about, but we are. If professionals are uncomfortable about it, then everyone will be uncomfortable."

"Their brains are what they are and they can't be changed," Fiscus said. "But we can look at it differently. It's not hopeless."

The Juneau FASD Diagnostic Clinic may be contacted at (907) 463-7373.

Southeast Alaska Regional FASD Conference

The Southeast Alaska Regional FASD (Fetal Alcohol Spectrum Disorder) Conference will be held February 18-20 at Centennial Hall. The conference is for those who have little or no understanding of FASD as well as for family, volunteer and professional care providers and educators with extensive knowledge and experience. Conference speakers and hands-on workshops will explore and teach strategies from the most successful FASD-related programs in North America. Continuing Education Units will be offered.

For more information or to register, visit http://www.ccthita.org/, call 463-7169 or e-mail djames@ccthita.org.