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Winter 2008/09 | Vol 12 No 2

Focus

Beyond bad, mad behaviour

Targeting the needs of people with FASD and mental health issues

By Patricia Nicholson

Errin Weigel thought her 7-year-old daughter Kalen’s behaviour seemed extreme, even in the context of attention-deficit/hyperactivity disorder (ADHD). As for her son, Dusty, he was often anxious, and was hospitalized for severe depression just before his 10th birthday. When Weigel read a newspaper article about fetal alcohol spectrum disorder (FASD), she felt a jolt of recognition.

Weigel suspected that her adopted children, who share the same birth mother, might have been affected by prenatal alcohol exposure, even though they did not have the physical characteristics of fetal alcohol syndrome (FAS). Through the online support group FASlink, she found a doctor who specialized in fetal alcohol exposure.

“That’s when the kids were finally diagnosed under the FASD spectrum,” says Weigel, who lives in Quill Lake, Saskatchewan. “Now we had some answers to why Kalen’s behaviour was off the charts for a diagnosis of ADHD and why Dusty at such a young age suffered from such severe anxiety and depression.”
Weigel’s story reflects the reality that people with FASD are at increased risk for co-occurring mental health or substance use problems that can complicate diagnosis and treatment.

FASD encompasses the full range of disabilities caused by prenatal exposure to alcohol, including neurological, physical, behavioural, mental and cognitive effects (see sidebar). These effects vary widely, depending on when during pregnancy exposure occurred and the amount of alcohol involved. Health Canada estimates that nine out of every 1,000 Canadians have some form of FASD.

Most people with FASD have no obvious physical characteristics, but may have any combination of other symptoms. They usually have impaired executive functioning and memory, despite having normal IQs. Learning disabilities and behavioural problems such as impulsivity and volatility are common.

Dr. Ann Streissguth’s groundbreaking 1996 study of secondary disabilities associated with FASD found that 94 per cent of people with FASD experienced mental health problems. Depression and personality disorders were common among adults, while 60 per cent of children with FASD also had ADHD. The study also showed that failure in school, trouble with the law, inappropriate sexual behaviour, alcohol and other drug addiction and employment and independent living were common secondary effects of FASD. Many of the individuals in the study had been in jail. These secondary effects are often the most damaging aspect of FASD.

But there is hope. The most important protective factor the research identified in decreasing risk for these secondary effects is early diagnosis of FASD and early intervention.

Breaking the Cycle, an early intervention program for high-risk mothers in Toronto, provides comprehensive services to women who have substance use problems and who are pregnant or parenting a child up to age six. The program not only addresses addiction issues, but also provides assessment and support with an emphasis on building strong mother-child relationships.

Dr. Mary Motz, a clinical psychologist with the program, says children in the program tend to follow a more normal developmental trajectory than would be expected, given their prenatal substance exposure and post-natal environments. Her research suggests that the quality of the mother-child relationship is the key to success, and is more predictive of outcomes than either prenatal or post-natal risk factors. “That seems to be the mitigating factor, with respect to both mental health and neurodevelopmental domains,” says Motz.

She adds that building a strong maternal relationship may help prevent early attachment disorders, which may be precursors to some of the secondary disorders that can have such a severe impact in adults with FASD. Early intervention also provides opportunities to address specific difficulties before they can result in frustration and school problems, and create problems later in life.

Unfortunately, children with FASD may reach adulthood without being diagnosed. FASD in adulthood is underdiagnosed, in part because the syndrome was only defined relatively recently, and also because the disability is so often invisible. Of the 450 clients assessed each year at the FASD Clinic at St. Michael’s Hospital in Toronto, about one-quarter are adults. Advanced practice nurse Dr. Brenda Stade, the program’s team lead, stresses the importance of diagnosis, regardless of the client’s age. “It’s hugely important because the person gets an understanding of themselves and why life has been so difficult,” she says. “Ninety per cent of the adults we see have either past or current problems with addiction and the law.”

Bonnie Buxton knows the scenario well. Her adopted daughter, Collette, was almost 18 when she was diagnosed with FASD. With a string of mental health diagnoses behind her, including learning disabilities, oppositional defiant disorder and conduct disorder, Collette had dropped out of school and was living on the street.

“Having the diagnosis changed our lives,” says Buxton, whose book Damaged Angels chronicles Collette’s story. “Since the diagnosis, at least we’ve all been on the same side. We know what we’re dealing with.”

Diagnosing FASD and assessing a client’s specific disabilities is crucial to accessing services such as disability support and appropriate treatment plans for mental health and addiction problems. But even with proper diagnosis, mainstream mental health and addiction services may not fit the needs of people with FASD.

Susan Opie, a therapist in private practice in Winnipeg, Manitoba, says clients with FASD require individualized treatment. “A lot of people with FASD have severe memory impairment and difficulties with executive functioning, following goals and following up on plans,” she says. “All those things have huge implications if you’re providing mental health services.”

Behavioural problems may exclude individuals with FASD from residential or inpatient programs, while learning and cognitive disabilities make it difficult for them to succeed in mental health and addiction programs designed for people without such disabilities, Opie says. Many clients struggle to use mainstream mental health services because many areas of Canada have few services for adults with co-occurring FASD and mental health or substance use problems.

Gaps in mental health services can be exacerbated by gaps in supported living. Adults with FASD usually require supported housing, but are excluded from many programs intended for people with developmental disabilities, whose criteria they may not meet. Although most adults with FASD have normal IQs, their other impairments make it difficult for them to live independently. “If they also have significant mental health needs that require additional treatment and follow-up with medication or self-care, it’s very difficult,” says Opie.

Judy Pakozdy, a founding member of the FAS Society of Yukon who now lives in Welland, Ontario, has experienced just that type of difficulty with her 28-year-old son Matthew, who was diagnosed with FASD at birth. Matthew has not been diagnosed with depression, despite feelings of anxiety and suicidal intentions that have brought him to the emergency room. “I don’t really care what the diagnosis is as long as they find him something that works,” Pakozdy says, noting that Matthew’s FASD symptoms of impulsiveness and volatility put him at higher risk for suicide.

Matthew teaches dance classes three times a week and works as a mentor at FASD workshops, but requires a full-time caregiver. However, he only qualifies for 19 hours of support per week. “People want to believe that because he can teach dance classes he’s OK,” Pakozdy says. “People don’t believe FASD is as debilitating as it is.”

Organizations such as the National Organization on Fetal Alcohol Syndrome in the United States are lobbying to have FASD included in the Diagnostic and Statistical Manual of Mental Disorders. “FASD isn’t really recognized as a psychiatric disability,” says Buxton, who also co-founded FASworld Canada, part of an international collaboration to raise awareness of the effects of alcohol use during pregnancy. Buxton adds that Canada has no national FASD organization to work on behalf of clients and their families. “It’s something that’s very badly needed,” she says.

For clinicians, it’s important to know that even with late diagnosis, intervention helps. “You can’t change the years before,” Stade says of clients who have experienced years of hardship related to undiagnosed FASD. “But we are positive that no matter what, you can still improve quality of life. It makes a difference.”