For centuries we have known about the impact prenatal alcohol exposure can have on a child’s development (1), yet the predominate culture in the United States minimizes this and turns away from acknowledgement of the repercussions. In fact, when it comes to both breadth and specificity, the known outcomes are rarely taught to professionals in the medical, educational, and mental health fields, leaving most in these disciplines ignorant of the significant needs of persons with fetal alcohol spectrum disorders (FASD).
It is time for this to change.
It is widely known that early intervention is most effective in supporting a variety of developmental, educational, health and other human occurrences. (2,3,4) Ensuring issues are noticed and addressed – with appropriate and intensive interventions suitable to the specific need – is one of the most effective approaches for supporting challenges that arise in a person’s growth and development. Unfortunately, most of the laws and community programming designed to address disabilities, health, and education challenges are built on the concept of failure. One has to have delays, deficits, or be failing to keep up in order to receive the support and interventions needed. Yet many of these delays and deficits could be prevented if we act early and with targeted focus, using evidence-based interventions and thoughtful approaches to services.
When children get their needs met effectively, many of these challenges cease to manifest.
There is a significant amount of research demonstrating the effects of prenatal alcohol exposure on the developing child (5,6,7), as well as data on the disproportional numbers of children with FASD in the foster care (8,9) and juvenile justice systems (4,9) and the number of incarcerated adults with FASD.(4,9,10) What is missing in this equation is the in-between: the time between exposure and these detrimental outcomes where we can significantly influence a child’s developmental trajectory in a positive and lasting way. This is our opportunity to alter deficit-inducing paths and instead facilitate constructive changes in our approach to ensure we are nurturing children in a way that encourages genuine and favorable outcomes.
In the United States, children with FASD are largely undiagnosed (11,12,13,14,15) and the vast majority of those with a diagnosis (or acknowledgement of prenatal alcohol exposure) remain grossly underserved. (11) In the educational system, many of these children are mislabeled as emotionally disturbed or referred to as behavioral problems. These labels focus primarily on secondary or tertiary complications that have developed over time due to lack of appropriate intervention of the underlying needs caused by the neurodevelopmental aspects of the disability. In order to effectively address the needs of these children, we must first remember that the brain is actually a physical organ and that brain-based disabilities, such as FASD, are physical disabilities. When we keep this perspective foremost in our minds, it is much easier to understand why accommodations are often the most supportive route to effective mitigation of symptoms.
Traditional behavior modification techniques such as sticker charts or level systems require the individual to be able to process information, make decisions, regulate their own behavior and understand social cues and social communication. Persons prenatally exposed to alcohol are likely to have deficits in all of these areas. (16,17,18) Just as asking a student who is deaf, hard-of-hearing, or has auditory processing difficulties to listen to a story and then answer questions would be inappropriate and ineffective, using behavior modification techniques with persons with FASD can be just as problematic. In the same way we would need to provide accommodations for the student who cannot hear or process auditory information effectively, we need to provide accommodations for students who cannot effectively manage the many skills necessary to self-regulate and process information well enough to be successful with sticker charts or level systems. When we use ineffective interventions we are setting students up for failure and are contributing to the deterioration of their self-esteem and self-confidence.
Ensuring persons with FASD receive suitable interventions requires a multifaceted approach (4,19) with multiple professions collaborating to facilitate the supports and services necessary for children with FASD to thrive. Bringing together professionals in the areas of healthcare and medicine, education, mental health, developmental services, social services, juvenile justice, and more, allows for information to be shared freely across the boundaries of professions and supports collaboration and out-of-the-box thinking that nourishes both the individuals and the systems that serve them. Only via this type of multidisciplinary approach to problem-solving challenges that arise and ensuring we are utilizing current and evidence-based information to inform our decisions and planning, can we create the changes needed to ensure persons who were prenatally exposed to alcohol receive appropriate and supportive services that provide them the opportunity, not just to avoid negative outcomes, but to thrive.
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Fetal alcohol spectrum disorder among pre-adopted and foster children. BMC Pediatr. 2020 Jun 3;20(1):275. doi: 10.1186/s12887-020-02164-z. PMID: 32493264; PMCID: PMC7271511. https://pubmed.ncbi.nlm.nih.gov/32493264/ 9 Popova S, Lange S, Shield K, Burd L, Rehm J. Prevalence of fetal alcohol spectrum disorder among special subpopulations: a systematic review and meta-analysis. Addiction. 2019 Jul;114(7):1150-1172. doi: 10.1111/add.14598. Epub 2019 Apr 29. PMID: 30831001; PMCID: PMC6593791. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6593791/ 10 McLachlan K, McNeil A, Pei J, Brain U, Andrew G, Oberlander TF. Prevalence and characteristics of adults with fetal alcohol spectrum disorder in corrections: a Canadian case ascertainment study. BMC Public Health. 2019 Jan 9;19(1):43. doi: 10.1186/s12889-018-6292-x. PMID: 30626356; PMCID: PMC6325737. https://pubmed.ncbi.nlm.nih.gov/30626356/ 11 NP. Prevention of secondary conditions in fetal alcohol spectrum disorders: identification of systems-level barriers. Matern Child Health J. 2014 Aug;18(6):1496-505. doi: 10.1007/s10995-013-1390-y. PMID: 24178158; PMCID: PMC4007413. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4007413/ 12 May PA, Baete A, Russo J, Elliott AJ, Blankenship J, Kalberg WO, Buckley D, Brooks M, Hasken J, Abdul-Rahman O, Adam MP, Robinson LK, Manning M, Hoyme HE. Prevalence and characteristics of fetal alcohol spectrum disorders. Pediatrics. 2014 Nov;134(5):855-66. doi: 10.1542/peds.2013-3319. PMID: 25349310; PMCID: PMC4210790. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4210790/ 13 Ira J. Chasnoff, Anne M. Wells, Lauren King; Misdiagnosis and Missed Diagnoses in Foster and Adopted Children With Prenatal Alcohol Exposure. Pediatrics February 2015; 135 (2): 264–270. 10.1542/peds.2014-2171 https://publications.aap.org/pediatrics/article-abstract/135/2/264/33477/Misdiagnosis-and-Missed-Diagnoses-in-Foster-and [Abstract] 14 O Connor, M. J., McCracken, J. T., & Best, A. (2006). Under recognition of prenatal alcohol exposure in a child inpatient psychiatric setting. Mental Health Aspects of Developmental Disabilities, 9(4), 105. https://www.semel.ucla.edu/sites/default/files/publications/Under%20Recognition%20of%20Prenatal%20Alcohol%20Exposure_0.pdf 15 Elias, E. (2013). Improving Awareness and Treatment of Children With Fetal Alcohol Spectrum Disorders and Co-occurring Psychiatric Disorders. Note from the editors, 71. https://lcfasd.com/wp-content/uploads/2017/09/FASD-MENTAL-HEALTH.pdf 16 Cook JL, Green CR, Lilley CM, Anderson SM, Baldwin ME, Chudley AE, Conry JL, LeBlanc N, Loock CA, Lutke J, Mallon BF, McFarlane AA, Temple VK, Rosales T; Canada Fetal Alcohol Spectrum Disorder Research Network. Fetal alcohol spectrum disorder: a guideline for diagnosis across the lifespan. CMAJ. 2016 Feb 16;188(3):191-197. doi: 10.1503/cmaj.141593. Epub 2015 Dec 14. PMID: 26668194; PMCID: PMC4754181. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4754181/ 17 Stratton, K., Battaglia, F. C., Stratton, K. R., Howe, C. J. (1996). Fetal Alcohol Syndrome: Diagnosis, Epidemiology, Prevention, and Treatment. United States: National Academy Press. https://www.google.com/books/edition/Fetal_Alcohol_Syndrome/Mc06VFJasosC?hl=en&gbpv=0&kptab=overview [Overview] 18 American Psychiatric Association. (2013). Diagnostic and statistical manual of mental disorders (5th ed.). https://doi.org/10.1176/appi.books.9780890425596 [Order Site]19 Brownell, Marni & Hanlon-Dearman, Ana & Macwilliam, Leonard & Chudley, Albert & Roos, Noralou & Yallop, Lauren & Longstaffe, Sally. (2013). Use of health, education, and social services by individuals with Fetal Alcohol Spectrum Disorder. Journal of population therapeutics and clinical pharmacology = Journal de la thérapeutique des populations et de la pharamcologie clinique. 20. e95-e106. file:///C:/Users/kelly/Downloads/FAR_012_029_e95_e106_Brownell_APR29.pdf