Why on earth should we saddle a child with a "label" of Fetal Alcohol Spectrum Disorder

Here is a good clean explanation from Ira Chasnoff

Moving from Blame to Diagnosis

After taking some time off from blogging, I'm back at the keyboard. Summer with the grandkids was a nice diversion, but even when I was in rest mode, the emails kept coming in, especially from adoptive parents. 

One recurring theme in these emails has been whether families should seek a diagnosis for their child if they think she has fetal alcohol syndrome (FAS). As one woman wrote,  "I'm the parent of an alcohol-exposed internationally adopted child (maternal history of alcohol use during pregnancy). Although our child has no morphologic features of FASD, I suspect she is on the FAS spectrum (due to behaviors I notice). I feel she should be assessed to intervene as early as possible. My husband has been resistant because he doesn't want to 'label' her." From there, the woman went on to describe her many concerns as well as her husband's wariness of addressing this issue.

Before we get to the question of whether to seek a diagnosis or not, we have to understand the concerns lying behind the question, not the least of which is the dissonance between the two parents. It is not uncommon to find an adoptive couple split in their views of the child. On the one hand, there is the parent who is distressed by the behaviors the child is displaying and insists on seeking answers. Then there is the other parent: firmly convinced that everything will be OK if they just give the child a chance to "grow out of it." Without resolution to this conflict, there is the risk of a viscous, downward cycle. The tension created between the parents only leads to increasing tension for the child. As the child becomes progressively more stressed by parental disagreements, he becomes even more out of control. The only solution? Come to quick agreement on what you want to do, then do it.

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Now we come to the mother's core question: Should families seek a diagnosis when they suspect their child has been affected by alcohol or drugs the birth mother took during pregnancy? Short answer...yes!

And here's why: A child's learning and behavior problems can create shame in parents, which in turn can lead to poor parenting strategies. Family members and friends tell the parents that they are "spoiling" the child; that they shouldn't be so anxious; or that stricter discipline, including spanking, is what the child needs. This is exactly what the child does not need.

The most common response I get when I tell adoptive families that their child has FAS is tears. These are tears of sadness, of course, but they also are tears of relief. "Everyone keeps blaming us, telling us it's our fault she doesn't behave." The sooner parents have a diagnosis and understand the role alcohol and drugs played in causing changes in the child's brain structure and functioning, the sooner they can come to grips with the challenges before them. Knowing the origins of the problem, they can begin an earnest effort to develop a treatment plan for the child. And most importantly, they, and others, can stop blaming the child for behaviors that for the most part are beyond the child's control.

As a caregiver, the only way to determine the right treatment for the child is to look beyond the behaviors themselves and attempt to understand their source. For example, most research shows that about 75% of children affected by prenatal alcohol exposure meet criteria for attention deficit hyperactivity disorder (ADHD). Once the child is diagnosed with ADHD, he immediately gets put on medication - most commonly a stimulant such as Ritalin-and the doctor and parents anxiously watch to see what happens. Stimulant medications work quite well in children with classic, genetic ADHD, which is based in inadequate functioning of the dopamine receptor system. (Dopamine is located in the prefrontal cortex of the brain, and Ritalin and other stimulant medications act on the prefrontal cortex to cause its release. With more dopamine available at the nerve endings, children have an easier time self-regulating their behavior.) 

However, in a child who has been exposed to alcohol prenatally, there can be structural or functional changes in a different part of the brain-the limbic system. The limbic system sits in the midline of the brain and serves as a conduit for storing and moving information around the brain. Damage to the limbic system by alcohol, including alcohol used in the first trimester of pregnancy (often before the woman knew she was pregnant), can disrupt the flow of information through the brain. Consequently, the information never reaches the prefrontal cortex to fire off dopamine as it is supposed to.

I'll borrow a story from my book The Mystery of Risk to help make this clear.

          It was one of those days in clinic when nothing seemed to be going right. Suzy, the last patient of the day, was no exception. "I give up," her adoptive mother said as she paced the clinic's interview room. "I can't do this anymore." I was a bit surprised to hear the sound of defeat in her voice and asked what the problem was. "We adopted Suzy, she's our daughter, we love her, but I'm about to give her back to DCFS." The mom lowered herself into one of the two chairs in the room and took a breath. "Her pediatrician said she has ADHD and put her on Ritalin, but things just got worse.  The last straw was a couple of weeks ago when we were playing in the front yard. All the sudden Suzy darted toward the street! I yelled, 'Suzy, stop, there's a truck coming!' Suzy stopped, looked at the truck, looked at me, and said, 'I see it,' and just ran right into the street. The truck driver slammed on his brakes and barely missed her. I ran into the street and grabbed her, but it was just chaos! I can't do this anymore." I gave the mother a chance to calm herself, then turned to Suzy. "Suzy, you're nine years old. Didn't you see the truck coming?" Suzy peered up at me, her blue eyes squinting as she took time to choose her words. "I saw the truck coming. I just didn't think it would get there the same time I would."

Suzy is telling the truth; she saw the truck coming. However damage to the hippocampus, a part of the limbic system that links visual input from the back of the brain to motor regulation in the prefrontal cortex, prevented her from recognizing it as a danger. With no thought of the consequences, she simply ran in front of a moving truck. Although Suzy does meet criteria for a diagnosis of ADHD, her decision to run in front of the truck does not come from "impulsivity" due to a lack of dopamine. Instead the problem lies in her inability to move information forward in the brain for a proper regulatory response. In other words, Suzy has normal amounts of dopamine; she just can't get the signals up to the prefrontal cortex to release the dopamine.

Placing a child like Suzy on Ritalin is like putting a child on speed; the Ritalin produces excess release of dopamine in a child who already has an adequate supply. Rather than stimulating the prefrontal cortex, the appropriate intervention for Suzy would focus on enhancing limbic system functioning by teaching Suzy ways to regulate her behavior.  And believe it or not, this can be done! There is a body of research that shows that if we identify a child with FAS and get that child services prior to the age of six years, we significantly alter the child's long-term developmental trajectory. While it's never too late to intervene, clearly we should try to get children diagnosed and into appropriate services before the age of six.

With a full set of information, we can provide intervention strategies for home and school that can help the child reach her full potential. And we can stop blaming parents for behaviors that are out of their-or the child's-control.