Misdiagnosis & Missing Diagnosis
by Kathy Hotelling, Ph.D., ABPP
Twenty years ago I adopted a beautiful blonde-haired, blue-eyed 4-month-old infant from Russia. She had intense eye contact, so much so that upon a layover at JFK on our way back to the United States, several people stopped us and said, “what an adorable child.” Her developmental milestones were delayed, but this was to be expected since she had been premature. Nonetheless, I asked each physician she saw in a wide range of specialties, including a geneticist, four psychiatrists, two gastroenterologists, an endocrinologist, a neuropsychologist and four neurologists, do you think she has Fetal Alcohol Syndrome? She was after all, from Russia, a country known to over utilize alcohol. To which I received a shrug of the shoulders or “no.”
By age 5, she had been diagnosed with ADHD, the first in a potpourri of other mental health diagnoses: OCD, social anxiety, generalized anxiety, RAD, ODD and others. But I was persistent in my advocacy for her; as a psychologist, this did not seem to be the whole picture — and some were just not accurate, such as RAD. As she approached 10 years of age, I was an avid user of Google on her behalf. I found an FASD diagnostic clinic within 10 miles of most of the practitioners she had seen. Armed with records, we went to the clinic. After a review of records, an interview, and a pediatric exam, my daughter was diagnosed with alcohol exposure in utero.
Unfortunately, as a consultant, I hear the same stories of what I call “misdiagnosis and missing diagnosis” that I experienced for the first 10 years of my daughter’s life. With two exceptions (birth relatives), the conversations all involve internationally and domestically adopted children.
The invitation to write this article is timely; in January 2015, online Pediatrics published research by Ira Chasnoff and Associates finding that 80 percent of 547 12-18-year-olds referred to the clinic, mostly commonly due to ADHD, as well as post traumatic stress disorder and conduct disorder, had an undiagnosed Fetal Alcohol Spectrum Disorder. Also unrecognized were objective signs of learning disorders, communication disorders and intellectual disabilities. The Atlantic picked up the story and published “When ADHD Isn’t What It Seems,” ensuring that at least some of the lay population will see the sobering (no pun intended) results of this research.
This link shows the overlapping behavioral characteristics and related mental health diagnoses with FASD (ADHD, RAD, Autism, Depression, Trauma, to name some) which leads to additional understanding as to why the missing and misdiagnosis of FASDs.
For more information, visit http://www.mofas.org/wp-content/uploads/2010/12/Overlapping-Characteristics-3-23-10-CBT.pdf.
So, what is Fetal Alcohol Spectrum Disorder? It is a lifetime physical disability where the primary, although not exclusive disability is in the brain: brain damage. An FASD is caused by exposure to alcohol in utero. There is no safe time and no safe amount to drink during pregnancy despite some physicians’ advice that “you can drink moderately.” The leading cause of intellectual and developmental disabilities is exposure to alcohol, but it is relatively unknown and as indicated above, underdiagnosed and often ignored by practitioners. Also contributing to the prevalence rate of 5 percent (May, 2014, Pediatrics) is the reality that nationally about 50 percent of women were not intending to get pregnant when they became pregnant and 62.3 percent are not aware they are pregnant until after five weeks of gestation; so even if they were inclined to not drink during pregnancy, they already may have exposed their fetuses. This leads to one of the many myths about FASDs: that the mother must have been an alcoholic. I am confident that no mother sets out to harm her unborn baby, even if she is addicted to alcohol, which is a disease. Often too, mothers of children with an FASD have an FASD themselves because alcohol and drug addiction is a vulnerability for these individuals, due to genetics and/or coping mechanisms.
It is estimated that at least 50 percent of children in care in the United States have been exposed to alcohol. Children in foster care are usually there due to neglect and family dysfunction, including violence, which usually includes drinking and addiction. Many foster and adoptive parents will say, “her mother was addicted to drugs.” Unfortunately, this fact ignores the reality that women using drugs also drink. Alcohol causes far more lifelong damage than drugs to the developing fetus.
FASD is an umbrella term, not a diagnosis. A variety of terms has been used during the last 40 plus years and includes Fetal Alcohol Syndrome, Fetal Alcohol Effects, Partial Fetal Alcohol Syndrome, Alcohol Related Neurodevelopmental Disorder or Alcohol-Related Birth Defects. Current terminology (per DSM V, the diagnostic manual) is either static encephalopathy (no proof of maternal drinking) or Neurobehavioral Disorder.
Among these terms, Fetal Alcohol Syndrome is the most recognized diagnosis among professionals and lay people. That is because “the face” often is recognizable: short palpebral fissure lengths (distance between edges of eye), smooth philtrum (the groove between the mouth and nose), and thin upper lip. But this is the tip of the iceberg — only about 10 percent of those affected by alcohol in utero have these distinctive signs. In a sense, these children are the “lucky” ones on the spectrum, usually being diagnosed at birth and hopefully receiving interventions that will help them throughout their lives.
But as for the approximately 90 percent of those who fall on the spectrum without the “full blown” Fetal Alcohol Syndrome, as my story and those of countless others indicates, they are not as fortunate. They and their families go through years of frustration, academic and social disappointment, and many diagnoses and usually medications to no avail. Parents of children with an Fetal Alcohol Sprectrum Disorder, diagnosed or not, are often blamed for their children’s behavior: “if you were just . . .,” they would not behave like that.” “Has your child been in therapy?” “They need a good spanking.”
Anne Streissguth, a pioneer in the FASD field, identified secondary conditions, which a person is not born with but develops as a result of an FASD. These include, but are not limited to mental health problems (depression, anxiety, conduct disorder, attention problems, and drug/alcohol abuse); disrupted school experience (suspension, expulsion, dropping out; 14 percent to 60 percent from childhood to adulthood); trouble with the law (14 percent of children and 60 percent of adolescents/adults); inappropriate sexual behavior (39-52 percent from childhood to adulthood); and substance abuse problems (one-third with 50 percent of those needing inpatient treatment).
When I conduct workshops on FASD, I always say that a red flag suggesting an evaluation is foster or adopted children. A second is multiple diagnoses with treatment through medication and/or therapy that does not yield results. Because of brain damage, medications often do not mitigate symptoms. Traditional therapy, which is predicated undisrupted executive functions (understanding of cause and effect, response to consequences, ability to generalize and abstract meaning, planning and execution, task flexibility, working memory, problem solving ability) is ineffectual in most cases.
The most efficacious approach to those with an FASD is the neurobehavioral approach as taught by Diane Malbin at www.fascets.org. Trying Differently Rather Than Harder has made a world of difference in the lives of individuals with FASD and their families, including my own. The lives of those with FASD are not lost, but seeking an early diagnosis and appropriate intervention and services allows them to become successful members of society. Success is individual, since individuals with an FASD have degrees and combinations of impairment in the various domains of brain function.
ABOUT THE AUTHOR: Kathy Hotelling, Ph.D., ABPP, is a licensed counseling psychologist. The first 30 years of her career were spent as a university psychologist, counseling center director, graduate faculty member and specialist in anorexia/bulimia nervosa. After her daughter was diagnosed, she retooled to become “fluent” in the specialty of FASD. She now serves as a consultant and trainer regarding FASD. For more information, visit www.kathyhotelling.com.
A Heart for Foster Care
By Rachel Randall
When asking founder and publisher Richard Fischer about the feedback he gets from the readers of Fostering Families Today, an adoption-resource publication company, he runs to the back off his office at 541 E. Garden Drive and brings out a stack of thank you letters from kids who have been adopted after being featured in his magazine..... more
Song Opens the Eyes of the Boy Who Can't See,
His Story Opens
the Hearts of Listeners
By Kim Phagan-Hansel
Many children in foster care today will need the support of mental health services as a result of the abuse and neglect that brought them into the foster care system. These vulnerable children have often experienced numerous traumatic events and clearly at least one, if not more, disruptions from attachment figures. What may not be as obvious is the critical role foster parents play in helping their foster children heal. With the right training and experience, the 24/7 care a foster parent provides will always trump the 50 minutes a child may spend with a therapist each week — even more so if the therapist is not well informed and experienced in working with children from the child welfare system. .....more
Fostering Families TODAY supports the innovative AdoptUSKids initiative administered by the Adoption Exchange Association. Visit their site at:
BE A CONTRIBUTOR! YOUR story is exactly what another reader might be looking for! FFT welcomes contributions from all involved in the child welfare system---from parents to professionals. Nominate someone for recognition. Speak up on issues that impact the system. Respond to articles in the current issue. Share your foster or adoptive parenting experience. See our writer's guidelines or contact the EDITOR and PUBLISHER Richard Fischer at firstname.lastname@example.org. Need ideas? Call the main office at (888) 924-6736.