FASD and Background History Collection: Asking the Right Questions

Note: This article was originally published in August 2013 Issue of Adoption Today Magazine (pp. 32-35).   

Sometime ago, I interviewed the grandmother of an at-risk 11 year old child in kinship care, whose language abilities I have been asked to assess in order to determine whether he required speech-language therapy services.  The child was attending an outpatient school program in a psychiatric hospital where I worked and his psychiatrist was significantly concerned regarding his listening comprehension abilities as well as social pragmatic skills.

As I started preparing for my assessment I realized that even though I had access to the child’s clinical records, they contained a number of gaps regarding the child’s prenatal and postnatal history, as well as developmental milestones.   As I was going through the interview process with the grandmother, I asked her whether her daughter, the child’s mother, abused any substances during her pregnancy. She responded that the child’s mother did abuse drugs and alcohol prior to her pregnancy but stopped as soon as she found out that she was pregnant. Right away, an alarm bell rang in my head, and I promptly followed up with my next question: “How many months pregnant was your daughter when she found out she was pregnant?” The caregiver thought for a second and responded: “She was 4 months pregnant!”

So what exactly did this piece of information reveal to me, you may be wondering? Well for starters the report of maternal alcohol abuse for the first several months of pregnancy provides a strong indication that on top of the child’s psychiatric diagnoses and suspected language deficits, the child may present with an undiagnosed alcohol related deficit, specifically, Alcohol-Related Neurodevelopmental Disorder (ARND).  If so, then this diagnosis is important to acknowledge because it may explain a number of symptoms related to the child’s behavioral, cognitive, and language profiles.

The above student had an 8 year old sister, who unlike him was reportedly developing “normally” through early elementary age until she started to manifest disturbing  internalizing behaviors (e.g., became withdrawn, socially isolated, etc) along with severe learning deficits. The grandmother took her for a comprehensive assessment at a different hospital, which yielded the diagnosis of autism. After being interviewed by me, the grandmother realized that the younger sibling may also potentially have alcohol related deficits, since her daughter, the child’s mother, drank excessively during the early stages of her second pregnancy, as well. Subsequent, reassessment of the child did confirm her suspicion and the diagnosis of autism was removed and replaced by the diagnosis of ARND.

I use the above example to illustrate a point. The diagnosis of Fetal Alcohol Spectrum Disorder (FASD) or alcohol related disabilities requires a different therapeutic approach and management as compared to the diagnosis of autism. That is why it is crucial that related professionals (e.g., psychiatrists, psychologists, social workers, speech-language pathologists, etc) recognize and acknowledge it, since appropriate diagnosis will allow the child to receive appropriate school placements and therapeutic services.

So what exactly is FASD? It is not an actual clinical diagnosis but rather an umbrella term for the range of physical, cognitive, behavioral, learning and language effects that can occur due to maternal alcohol consumption during pregnancy.  While some children with FASD may manifest clear physical signs (short palpebral fissures, thin upper lip, and smooth philtrum), many others will have typical facial features yet present with significant cognitive, linguistic and social-emotional deficits affecting overall functioning.

So what difference does this diagnosis make?  A considerable one, actually! Lack of appropriate diagnosis places the child at risk of misdiagnosis and mismanagement.  Child’s behavior may be “blamed”, while caregivers may be accused of “poor parenting” practices, all while the neurobehavioral and neurobiological causes of the child’s symptoms may be overlooked.  In contrast, early diagnosis of this disorder is strongly correlated to positive long-term outcomes (Streissguth et al 2004).  It will allow the child to receive appropriate related services (e.g., speech language therapy, occupational therapy, counseling, etc), which may improve functioning, adaptability, self-awareness, as well as stabilize parent-child interactions.

So how can we make sure that no potential information is missed? For starters it’s important to understand that select pediatric populations are at greater risk for alcohol related disabilities. At-risk populations such as internationally and domestically adopted children, children in foster and kinship care, abused and neglected children, as well as children from geographic areas with high alcohol consumption rates are particularly vulnerable, and present with much higher rates of alcohol related disabilities as compared to general population (Astley, 2011).

However, due to FASD related diagnostic challenges which include issues with examiner knowledge, experience and bias, difficulty with confirmation of alcohol exposure in utero, overreliance on physical examination (to confirm FAS related features), as well as too broad diagnostic criteria, many children with alcohol related deficits are undiagnosed, misdiagnosed and simply “slip between the cracks” when it comes to qualifying for and receiving services (Kjellmer & Olswang, 2012). Public school professionals commonly report lack of knowledge regarding alcohol related deficits and are often at a loss when it comes to appropriate service planning for affected children (Koren, Fantus, & Nulman, 2010). As a result children with alcohol related deficits tend to be greatly underserved because their learning and behavioral difficulties are not always recognized and understood by educators (Watson & Westby, 2003).

So what can caregivers and related adoption professionals do to ensure that these children don’t “slip between the cracks” and receive appropriate diagnosis and service provision? For starters, both need to collect detailed background information, which can help determine the potential presence of alcohol related deficits.

Asking detailed questions is a must! General questions such as: “Were the child’s developmental milestones on track?” are vague and confusing, especially in instances when the reporting individuals don’t know what “normal milestones” are. To them emergence of speech and language around 3 years of age (vs. around 12-15 months) may be perfectly normal!

Below is a list of questions which caregivers and professionals can ask when attempting to ascertain the potential risk factors for alcohol related disabilities in the child’s case history.

Questions Regarding Prenatal History:

• —  What was the age of the mother when she gave birth to the child in question?
• —  How many other pregnancies occurred prior to/post this one?
• —  How many children does the mother currently have?
• —  Were maternal rights ever terminated in the past and if so with which children and due to what factors?
• —  Is there a history of maternal neglect?
• —  Is there a history of abuse in the family
  • —  Physical, sexual, emotional?
• —  Is the father known? If so is he involved in the family?
• —  Is the father the same for all the children?
• —  Is there a family history of mental illness?
• —  Is there a family history of substance abuse?
• —  What is the maternal (family’s) socioeconomic status?
• —  Is maternal geographic region known for history/tolerance of heavy drinking?
• —  Is there a maternal history of substance abuse?
  • —  Was the biological mother taking any substances prior to finding out she was pregnant?
  • —  Alcohol?
    • —  If yes, how frequently per day?
      • —  What amount?
      • —  What type?
  • —  Any drugs including marijuana?
    • —  If yes, what type and how frequently per day?
• —  If yes, how many months along was the mother when she found out she was pregnant? 
• —  Were the parental rights ever terminated with the child in question?
  • —  If yes, why?
    • —  Ask to see/find court order if available

Questions Regarding Developmental Milestones:

Does the child have history of:

• —  Significant medical issues?
  • —  If so list what type and how were they treated?
    • —  Failure to thrive?
    • —  Swallowing deficits?
    • —  Feeding deficits?
• —  Delayed speech/language milestones?
  • —  At what age did the child start babbling?
  • —  At what age did the child start using first words?
  • —  At what age did the child start using word combinations?
• —  Did the child ever have inconsistent language gains (e.g., had the skill then lost it?)

—  At what age did the child started to

• • —  Sit
  • —  Crawl
  • —  Walk
  • —  Was potty trained?
• —  How are the child’s self help skills?
  • —  Dressing?
  • —  Feeding?
  • —  Bathing?
  • —  At what age did they develop?
• —  Did/does the child have self-regulation difficulties?
  • —  Was s/he difficult to soothe?
  • —  Excessively irritable?
  • —  Cried a lot as an infant/toddler?
  • —  Does the child had/have severe temper tantrums and behavioral outbursts?
• —  Is the child socially inappropriate with peers/adults?
  • —  If yes explain and provide details.
• —  Is the child inattentive and hyperactive?
  • —  Does the child have poor impulse control?
  • —  Does the child have poor decision making skills?
• —  Is the child anxious?
• —  Easily over stimulated?
• —  Oppositional?
• —  Ignores what s/he is told?
• —  Does the child have challenges with transitions/changes

 Questions Relevant to School-Aged Children:

• Has a child been diagnosed with a psychiatric disorder?
  • • Concomitance of psychiatric impairments with FASD is very high
  • Does the child have learning disabilities?
    • Reading and Writing Deficits
    • Listening Comprehension Deficits
    • Information Processing Deficits
• Are the child’s language abilities significantly poorer than those of his/her peers?
  • Does s/he speak in shorter less complex sentences
  • Has Immature Vocabulary?
  • Has Impaired Story Telling Skills?

It does not have to be the case with all children with FASD. Some researchers found that some children with FASD may present with “good superficial speech and sociability that belie later deficits in both language and peer relationships” (Weinberg, 1997, p. 1182)

• Does with child from at–risk background present with adequate communication skills but has
  • Problem solving deficits?
  • Social skills deficits?
    • Emotional Immaturity
    • Does s/he understand abstract information?
    • Can s/he see the “big picture” in messages/text?
    • Can s/he socially relate to others?
    • Does s/he have significant difficulty learning from experience?

While the above list is by no means exhaustive, it can serve as a good foundation for asking the right questions. It is important to understand that even if most of the prenatal information was not available or limitedly available to the caregivers prior to adoption, answering self questions based on the observations of the at-risk child’s development and school functioning is still beneficial.

Asking the right questions is the first yet critical step in determination of appropriate diagnosis and ultimately appropriate and relevant service provision for children with alcohol related disabilities.  If you are concerned, bring it up!  Make a referral (adoption professional) or schedule (caregiver) the child for an assessment with relevant related and medical professionals specializing in diagnosis of alcohol related deficits.  By taking this step you may be paving the way to timely diagnosis and relevant intervention provision for the child.

References:

1. Astley, S.  (2011). Diagnosing fetal alcohol spectrum disorders (FASD). In Adubato, S., Cohen, D. (Eds.), Prenatal alcohol use and FASD: Diagnosis, assessment and new directions in research and multimodal treatment (pp.3-28). Oak Park, IL: Bentham Science.
2. Kjellmer, L & Olswang, L (2012, In Press) Variability in classroom social communication: Performance of children with fetal alcohol spectrum disorders and typically developing peers. Journal of Speech, Language, and Hearing Research.
3.  Koren, G. I., Fantus, E., & Nulman, I. (2010). Managing fetal alcohol spectrum disorder in the public school system: a needs assessment pilot. Canadian Journal of Clinical Pharmacology, 17(1), e79-89.
4.  Streissguth, A.P., Bookstein, F.L., Bart, H.M., Sampson, P.D., O’Malley, K., & Young, J.K. (2004). Risk factors for adverse life outcomes in fetal alcohol syndrome and fetal alcohol effects. Journal of Developmental and Behavioral Pediatrics, 25 (4), 228-238.
5. Watson, S. M. R., & Westby, C. E. (2003). Prenatal drug exposure: Implications for personnel preparation. Remedial and Special Education, 24(4), 204-214
6.  Weinberg, N.Z. (1997). Cognitive and behavioral deficits associated with parental alcohol use. Journal of the American Academy of Child and Adolescent Psychiatry, 36, 1177-1186.

cite as: Elleseff, T (2013, August 1) FASD and Background History Collection: Asking the Right Questions. Adoption Today, pp 32-35.