It has been two years since a Tennessee mom sent her 7-year-old adopted son back to Russia with a note that read: "I no longer wish to parent this child." While no definitive diagnosis ever was made public, the boy was thought to suffer from fetal alcohol spectrum disorders.
Diane Malbin, a clinical social worker in Portland, Ore., is founder of FASCETS, a nonprofit organization, and author of "Trying Differently Rather Than Harder." She has studied the disorder for more than 25 years and conducts seminars for everyone from teachers to prosecutors. She enlightened us on this common, but still misunderstood, disability.
Q. What is FASD?
A. It's an umbrella term that includes the medical diagnosis of a brain-based disorder when there is a history of alcohol use during pregnancy. There usually are no physical features ... but some of the primary behaviors associated with FASD include slower processing speed, problems with judgment, memory storage and retrieval, functioning at a much younger age developmentally and others. ... These individuals are often at greater risk because of the lack of physical characteristics.
Q. How does alcohol affect the brain?
A. Prenatal exposure to alcohol can have a debilitating effect on the developing brain and central nervous system. In short, it kills cells in the brains of developing fetuses. The long-term effects of other drugs — such as cocaine and heroin — appear less damaging than alcohol.
Q. You say FASD is still under-diagnosed. What are some typical labels given these kids?
A. Diagnoses that capture primary symptoms include ADD or ADHD, learning disabilities and others. Diagnoses that capture "secondary" symptoms — defensive behaviors that are seen when a person is … punished for symptoms of their physical disability — include Oppositional Defiant Disorder or conduct disorder, to name a few. These are not a part of FASD and are preventable.
Q. Why is getting a diagnosis so important?
A. Can you think of any person with any kind of other physical disability who wouldn't benefit by having their condition recognized? Without identification, behavioral symptoms of brain dysfunction are seen as intentional and are punished. As a result, many people are chronically frustrated and develop secondary behaviors and mental health problems, such as anxiety, depression and addictions. ... It would be abnormal for that child to not develop (these) defensive behaviors because of the poor fit between expectations and actual ability.
Q. What is the most important point that you'd want people to know about FASD?
A. That it's a brain-based disability and that the brain is the source of all behaviors. This is the basis for asking different questions, shifting from seeing the person as one who "won't" to one who possibly "can't." Getting frustrated with someone who has FASD is like beating a blind child for refusing to read the blackboard.
Q. One of the behaviors associated with FASD is the inability to understand consequences. So, how do we hold people accountable for their actions?
A. The shift is from punishing to preventing. "Accountability" is a term that means "I see the look on your face and know you get what you just did and will never do it again." But what if the person is 24 going on 12? Do the same standards apply? What cognitive tasks are required in order to be accountable? Memory storage, retrieval, ability to weigh and evaluate. … Providing accommodations for people with a brain-based disability is as ethical, appropriate and effective as providing them for other physical disabilities.
Q. Can you give an example of an accommodation? For example, in a class with a disruptive child or a young adult stopped by the police?
A. The first question is, "Who is the person and what is the setting and fit?" Solutions emerge from this understanding. For a teacher: Think younger, recognize strengths, give time to finish a task, make sure the student is not too fatigued ... are just a few. With the adult scenario, make sure each police officer knows to ask, "Do you have an information card?" Such cards are available for people with FASD. Since many young adults have long histories of frustration and fear when confronted by authorities, it's particularly important that this be asked to prevent escalating the situation.
Q. Are you optimistic that we will be able to make this shift in the real world — away from the traditional punishment model?
A. I'm more optimistic than any other time in my career. Just like now we take for granted the elimination of architectural barriers for those with physical conditions, in the very near future we'll also take for granted neurodiversity.