Positive Approaches Journal, Volume 12, Issue 2
VanEerden | 25-42
Volume 12 ► Issue 2 ► August 2023
Fetal Alcohol Spectrum Disorder Effects on
Communication, Learning, and Behavioral Health
Robin VanEerden, MS, LPC, NADD-DDS, CC
Fetal Alcohol Spectrum Disorder (FASD) is a non-diagnostic umbrella term used to describe a group of diagnoses related to prenatal alcohol exposure. This group includes Fetal Alcohol Syndrome (FAS), Partial Fetal Alcohol Syndrome (pFAS), and Alcohol Related Neurodevelopmental Disorder (ARND) (CDC, 2004). Fetal Alcohol Syndrome is a medical diagnosis, and it is the only syndrome under the FASD umbrella that can be diagnosed without confirmed maternal drinking (Streissguth, 2007). Alcohol puts the developing fetus at risk due to the interference of developing cells within the central nervous system.
FASD is the leading preventable cause of intellectual disabilities. While influenced by maternal nutrition, timing, frequency, and amount of alcohol exposure (Maier & West, 2001), FASD can happen to any fetus that comes into contact with alcohol while in utero. The only known cause of FASD is maternal drinking while pregnant. In the United States, by 1996 FAS was estimated to affect 1-3 live births per 1,000 (Stratton et la., 1996). By 2009 FASD was estimated to affect almost 1 out of 100 newborns in the United States each year (May & Gossage, 2001; May, et al., 2009). Currently, the estimated prevalence of fetal alcohol spectrum disorders (FASD) is conservatively around 1%; of the US population however, a recent study in North America found rates as high as 5 % of the school-age population affected by prenatal alcohol exposure, indicating a significant public health concern (May et al., 2014; May et al., 2015). While there have been considerable efforts in the public health sector to reduce drinking during pregnancy (Grant et al., 2004), there has not been a meaningful decrease in prenatal alcohol exposure over the past decade (Thomas, Gonneau, Poole, & Cook, 2014). Approximately half of all pregnancies are unplanned and the rates of drinking during childbearing age are substantial; thus, there is ongoing risk of having children born who are affected by prenatal exposure to alcohol (Finer & Zolna, 2011; Green, McKnight-Eily, Tan, Mejia, & Denny, 2016). The effects of this brain-based physical disorder can be life-long (from birth to death) and are influenced by access to effective services and supports. With effective supports, more positive life outcomes are possible. There are many children and adults who are living with the effects of FASD but have not been formally diagnosed or identified. This does not change the fact that their day-to-day lives may be impacted (Grant, Brown, Dubovsky, Sparrow, & Ries, 2013). In addition, Kara N. Thomas et.al, have recognized that FASD has not been thoroughly explored regarding the paternal contribution to the spectrum disorder. Using a physiologically relevant mouse model,
the studies are the first to demonstrate that male drinking is a plausible yet completely unexamined factor in the development of alcohol-related craniofacial abnormalities and growth deficiencies. The study demonstrates the critical need to target both parents in pre-pregnancy alcohol messaging and to expand epidemiological studies to measure the contributions of paternal alcohol use on children’s health (K. Thomas et.al 2023)
In Pennsylvania, an FASD Task Force was first convened in
2006. The Task Force is comprised of representatives from numerous stakeholder
groups including physicians, state agency representatives, service providers,
and parents and family members.
The initial product of the FASD Task Force, The Pennsylvania Fetal Alcohol Spectrum Disorders Action Plan, released in 2008, provided “a plan of action to address the very serious issue of birth defects caused by prenatal alcohol exposure.”
The FASD Task Force was reactivated in 2015, with a broader mission: To help establish a system of care for FASD in PA that raises awareness of FASD, prevents FASD, and provides services and supports to individuals of all ages impacted by FASD and their families. Current Task Force goals include:
- Creation of a dedicated, consumer-led entity to promote prevention and support affected individuals and families.
- Broadly-based workforce training on FASD identification and interventions.
- Establishment of eligibility for Early Intervention services for children with an established or suspected FASD.
- Prevention and intervention of FASD
- Awareness: Increase awareness of FASD and its symptoms.
- Data: Collect, interpret, and disseminate information on FASD.
- Education: Increase the knowledge of FASD within the professional community and the general population.
- Funding: Ensure adequate funding for prevention as well as services for diagnosis and intervention for children, adults and families affected by FASD.
- System: Align and improve systems of care by making FASD a statewide priority.
While these are positive changes regarding this spectrum disorder, identification and diagnosis can be difficult as not all people have specific characteristic facial features or physical symptoms due to FASD. (Erb, VanEerden, 2014). However, most of the primary effects of FASD are invisible and are related to neurological (brain based) changes (Substance Abuse and Mental Health Services Administration, 2014) and to the neuroendocrine system (hormones that regulate mood, emotions, immune system, … etc.) (Uban, et al., 2011).
Primary effects include challenges with:
- executive function (planning, switching between tasks, reasoning, problem solving and navigating relationships)
- understanding and foreseeing consequences; not foreseeing danger
- memory (can be both long and short term)
- applying knowledge in different environments (generalization)
- recalling information
- regulating emotion
- being biologically unable to calm once emotionally escalated (altered stress response)
- making connections between cause and effect
- learning from mistakes
- attention deficits
- identifying hunger, thirst (too much, too little)
- sleeping disturbances
- cognitive abilities and below average IQs
These effects can be made better or worse through support strategies, life experiences, social situations, and access to appropriate and effective services. When effects, poor supports, and stressful social situations combine, they can lead to common but not inherent characteristics. These characteristics can include problems with (Substance Abuse and Mental Health Services Administration, 2014):
- lack of stranger awareness
- misinterpretations of social situations and social cues
- enjoying talking though the act of talking is often more important than the content
- talking about unrealistic subjects (magical thinking)
- poor judgment
- waking up in the morning
- confabulation (telling made up or misinterpreted memories about oneself or the world, without a conscious intention to deceive).
Cumulatively, these characteristics can put a person with FASD at a greater risk for:
- school/work failure
- employment difficulties
- substance abuse issues
- psychiatric confinement
(Substance Abuse and Mental Health Services Administration, 2014)
Due to the exposure of alcohol, on the developing brain and the influence of social factors, those on the spectrum may present very differently. Specific strengths and deficits need to be identified. A person may be able to read a book but be unable to process what was just read. One day memory may be intact, and recollection of task completion is apparent yet the next day these skills may not be present. Most people are incredibly friendly and caring, though they may lack important social skills which subjects them to victimization. They may desire to go to an event, but at the last minute become emotionally over aroused and refuse or decline to go. The transition may cause overwhelming emotions in relation to the environmental change. A person may not be able to manage money or balance a checkbook yet can create beautiful artwork (Erb, VanEerden 2014)
Token economies and reward systems are often ineffective interventions for persons with FASD. This is because of the difficulty with connecting cause and effect over time. Due to cognitive and auditory processing issues, even a simple conversation could be over- stimulating. The combination of an altered stress response and ineffective coping skills could cause overwhelming emotions. These uncontrolled emotions might lead to property destruction, elopement, legal issues, and other potentially dangerous behaviors [reactions]. (Erb, VanEerden, 2014).
In efforts to distribute evidence-based practices, the Substance Abuse and Mental Health Services Administration published TIP 58 A Treatment Improvement Protocol that explains in detail best practice prevention, intervention, and strategies across the life span. This article cannot possibly cover all the information listed in TIP 58, however its review is essential to work and serve people on this spectrum.
The topics that will follow are dedicated to identification, screening and strategies that are helpful to those on this spectrum.
The physical signs of Fetal Alcohol Syndrome can include a thin upper lip, flattened philtrum, shortened palpebral fissures which makes the eyes look farther apart, a shortened nose relative to the length of the midface and underdeveloped jaw. Not all children or adults exposed prenatally to alcohol will have the physical features. The neuropsychological and behavioral aspects of the spectrum disorder can include lower to average IQs, which can range from an intellectual disability to normal IQ, poor executive functioning, lack of social and communication skills, lack of motivation or initiative, poor judgement, failure to consider consequences of actions, social withdrawal, poor impulse control, intermittent anxiety. (Understanding Fetal Alcohol Spectrum Disorders (FASD) – A Comprehensive Guide for Pre-K-8 Educators (duke.edu) 2016. People on the spectrum may also appear to be oppositional, stubborn, or resistant at times. Therefore, separating what appears for example, to be oppositional or resistance to the environment can be better assessed through the lens of identifying strengths and abilities through a neuropsychological assessment. According to the Cleveland Clinic a neuropsychological assessment tests for the following:
- General intellect
- Reading/reading comprehension
- Language usage and understanding of what others say (receptive language skills)
- Processing speed
- Learning and memory
- Executive functions, which are higher-level skills used to organize and plan, manage time, problem solve, multi-task, make judgments and maintain self-control
- Visuospatial skills
- Motor speed and dexterity
- Mood and personality
With the ability to gain knowledge regarding strengths and deficits, strengths can be acknowledged and used to build self-esteem and additional skills, while deficits can be recognized and accommodated or in some cases developed.
According to Duke University FASD Guide, sophisticated brain imaging technologies are now being used to identify the structural abnormalities present in the brains of living FASD children. Magnetic Resonance Imaging (MRI) has revealed an overall reduction in brain size, confirming previous autopsy findings. However, independent of the overall reduced brain size, MRI has revealed at least four (4) major brain structures that are affected. These include: the Corpus Callosum, a large bundle of nerve fibers that connects the two hemispheres together, enabling communication between the right and left brain; the Caudate Nucleus, a structure that resides below the level of the cerebral cortex, which controls motor abilities and cognitive function; the Hippocampus, another subcortical structure, which controls the ability to store new memories and participates in spatial learning; and the Cerebellum, a structure that resides at the back of the brain, controlling motor skills, balance, and coordination. In addition to imaging structural abnormalities, other forms of brain imaging can reveal functional abnormalities within specific brain areas. For example, scientists have shown that FASD children have a delay in a certain type of electrical activity within the Parietal Cortex that is associated with information-processing. In addition, imaging techniques, such as Positron Emission Tomography (PET), can be used to study the metabolic activity of the brain (i.e., how well it is actually working). In FASD children, there is a reduction in metabolic function within the caudate nucleus as demonstrated by PET imaging. When combined with structural information from MRI studies, these studies can provide a powerful picture of the damage to specific regions within the working brain. This information can guide treatment and communication for improved outcomes. Other interventions both early and throughout the life span may include full medical examinations that follow the child in the early years to ensure healthy development, occupational therapy that would include sensory integration and processing assessments.
According to Manitoba Education, Training and Youth, “Students who are alcohol-affected often experience difficulties in processing the different sensory information they receive. For most individuals, the processing of sensory information is automatic. Most individuals can screen, filter, and selectively attend to different sensory information. However, children who are alcohol-affected often have difficulty with these processes. They may be over-responsive to some forms of sensory input and under-responsive to others. They may become overloaded by the sensory information they receive and, as a result, are unable to organize their behavior.” https://fasdsocalnetwork.org/sensory-processing/
As individuals age and life issues become more complex, therapeutic interventions may be needed. Because of processing, recall, and lack of ability to generalize information and executive functioning capabilities, it is important that counselors and other helpers are educated on FASD. Therapeutic interventions that are more effective can be effective if counselors or helping partners pair talk therapy with pictures, art, music, and possibly pet and equine therapy. These interventions can play a great role in expression of feelings and processing information in a way that is understood between the helper and the person on the spectrum. According to the CDC the following are alternative treatments that can be helpful:
- Auditory training
- Relaxation therapy, visual imagery, and meditation (especially for sleep problems and anxiety)
- Creative art therapy
- Yoga and exercise
- Acupuncture and acupressure
- Massage, Reiki, and energy healing
- Vitamins, herbal supplements, and homeopathy
- Animal-assisted therapy
There are many other “day to day” interventions and strategies needed that can make each day a more positive one for professionals, caregivers, family members and the person on the spectrum.
- Educate the entire team on FASD. This can include natural supports, family, vocational and residential supports, supports coordinators, community habilitation workers, law enforcement, primary care physicians, therapists, direct care professionals, and hospital staff.
- When developing support strategies, utilize the strengths and input of the entire team: the individual with FASD, family, friends, community supports.
- Partner with community services to ensure that people and their needs are understood.
- Make sure support plans are FASD informed, strength based, and trauma informed.
- Request assessments that may identify which area of the brain may have been affected (i.e., neuropsychological evaluation).
- Make sure that expectations for people match their ability.
- Work with a prescribing psychiatrist who is FASD informed and understands the mental health diagnoses that may co-exist with FASD.
- Accept that sometimes people can’t do a task; it is not that they won’t (and sometimes they can one day and not the next).
- Look at how to make a person’s routine more structured and predictable.
- Investigate and address sensory issues such as problems with auditory processing and visual deficits, and then implement effective strategies (i.e., sensory integration evaluation by an occupational therapist trained in sensory integration).
- Assess the environment for potential sensory issues: Is it too cluttered, loud, or crowded?
- Use labels, color codes, visual schedules, and other organizational tools.
- Use role play and modeling to teach new skills and to review acquired skills.
- Assist the person to develop healthy friendships and community supports.
- Encourage physical exercise.
- Write things down, draw pictures, and do not rely on verbal communication!
- Support persons must role play appropriate social skills and healthy choices.
- Use a coaching or mentorship model.
- Develop a Wellness Recovery Action Plan (Copeland Center, Mary Ellen Copeland).
- Develop a crisis plan.
- Develop safety plans, as necessary.
- Clearly explain expectations before, during, and after activities.
- Plan for breaks and rest periods before someone experiences emotional dysregulation.
- Use auditory cues according to developmental skill level including texting, phone reminders, egg timers, and other electronic reminders.
- Provide appropriate instruction regarding dating, sexuality, and sexually appropriate behaviors.
- Match strategies with personal strengths and personal motivation.
Fetal Alcohol Spectrum Disorders are prevalent yet, by providing appropriate intervention, people can lead more successful, productive, and happy lives.
In conclusion, this brain-based disability is invisible unless the person has physical features that can be identified. A small percentage of people who have an FASD have the all the accompanying facial features (Substance Abuse and Mental Health Services Administration, 2014). Persons are not always diagnosed with an intellectual disability, but may have severe deficits in social, communication, and vocational/educational domains. FASD does not have a socio-economic or cultural boundary. While influenced by maternal nutrition, timing, frequency, and amount of alcohol exposure, FASD can happen to any fetus that comes into contact with alcohol while in utero.
It is important to learn to understand the presentation of people with FASD. Referral to the proper community physicians including primary care physicians, psychologists, counselors, and neuropsychologists is important for the journey towards appropriate and effective supports. It is also a social responsibility to not judge and to spread the message of “0-4-9” as a preventative measure. Zero alcohol for nine months.
While those with FASD may have deficits, they also have many wonderful skills and strengths. These need to be identified to create life goals which foster self-esteem and increase motivation. Strategies and services must be friendly to people with an FASD. When strategies are not FASD friendly, problems can be made worse causing frustration, low self-image, and high stress.
1. Center for Disease Control and Prevention (2004). Fetal alcohol syndrome: Guidelines for referral and diagnosis. Retrieved from: http://www.cdc.gov/ncbddd/fasd/documents/fas_ guidelines_accessible.pdf
2. Doctor, S. (2013, May 23). FASD intervention strategies part I: A global approach to interventions appropriate to a person with an FASD. FASD Interventions Across the Lifespan. Webinar retrieved from: http://fasdintervention.wordpress.com/2013/05/
3. Graefe, S. (2006). Living with FASD: A Guide for Parents. Vancouver, B.C.: Groundwork Press.
4. Grant, T. M., Brown, N. N., Dubovsky, D., Sparrow, J., & Ries, R. (2013). The impact of prenatal alcohol exposure on addiction treatment. Journal of addiction medicine, 7(2), 87-95.
5. https://fasdsocalnetwork.org/sensory-processing/ last viewed 6/19/23
7. Maier, S. & West, J. (2001). Drinking patterns and alcohol-related birth defects. Retrieved from: http://pubs.niaaa.nih.gov/publications/arh25-3/168-174.htm
8. Malbin, D. (2008). Fetal Alcohol Spectrum Disorders: A Collection of Information for Parents and Professionals. Portland, OR.: FASCETS, Inc.
9. May, P. A., & Gossage, J. P. (2001). Estimating the prevalence of fetal alcohol syndrome: A summary. Alcohol Research and Health, 25(3), 159-167.
10. May, P., Gossage, J., Kalberg, W., Robinson, L., Buckley, D., Manning, M., & Hoyme, H. (2009). Prevalence and epidemiologic characteristics of FASD from various research methods with an emphasis on recent in-school studies. Developmental Disabilities Research Review, 15(3),176-192.
11. May, P. A., Baete, A., Russo, J., Elliott, A. J., Blankenship, J., Kalberg, W. O., ... & Hoyme, H. E. (2014). Prevalence and characteristics of fetal alcohol spectrum disorders. Pediatrics, 134(5), 855-866.
12. Mitchell, Kathleen T. (2002). Fetal Alcohol Syndrome: Practical Suggestions and Support for Families and Caregivers. Washington, D.C.: National Organization on Fetal Alcohol Syndrome.
14. National Organization on Fetal Alcohol Syndrome: www.nofas.org
15. Paley, B. (2009). Introduction: Fetal alcohol spectrum disorders - shedding light on an unseen disability. Developmental Disabilities Research Reviews, 15, 235-249.
16. Streissguth, A. (2007). Offspring effects of prenatal alcohol exposure from birth to 25 years: The Seattle prospective longitudinal study. Journal of Clinical Psychology in Medical Settings, 14, 81-101.y
17. Substance Abuse and Mental Health Services Administration: Fetal Alcohol Spectrum Disorders Center for Excellence: http://www.fasdcenter.samhsa.gov/
18. Substance Abuse and Mental Health Services Administration. (2014). Addressing Fetal Alcohol Spectrum Disorders (FASD). Treatment Improvement Protocol (TIP) Series 58. HHS Publication No. (SMA) 13-4803. Rockville, MD: Substance Abuse and Mental Health Services Administration.
19. A Treatment Improvement Protocol (TIP); Addressing Fetal Alcohol Spectrum Disorders (FASD) TIP 58 (2014). Substance Abuse and Mental Health Services Administration Center for Substance Abuse Treatment: Rockwell, MD.
20. Uban, K. A., Bodnar, T., Butts, K., Sliwowska, J. H., Comeau, W. and Weinberg, J. (2010) Direct and Indirect Mechanisms of Alcohol Teratogenesis: Implications for Understanding Alterations in Brain and Behavior in FASD, in Fetal Alcohol Spectrum Disorder: Management and Policy Perspectives of FASD, First Edition (eds E. P. Riley, S. Clarren, J. Weinberg and E. Jonsson), Wiley-VCH Verlag GmbH & Co. KGaA, Weinheim, Germany. doi: 10.1002/9783527632510.ch5
21. Understanding Fetal Alcohol Spectrum Disorders (FASD) – A Comprehensive Guide for Pre-K-8 Educators (duke.edu) 2016 last viewed 6/19/23
22. Erb, A. and VanEerden, R. (2014) The Direct Support Workers Newsletter, Vita Community Services, Volume 3, Issue 5. Originally titled: Something Is Different Here: Promoting Awareness of an Invisible Disorder. Minor edits made from original article.
23. Erb, A. and VanEerden, R. 2014 Brief Review of Fetal Alcohol Spectrum Disorder, Applied Case Study and Discussion: The NADD Bulletin, Volume 17, Number 6.
Robin VanEerden earned her Master of Science Degree from Shippensburg University in Community Counseling and acquired her License in Professional Counseling (LPC). She has served adults with Dual Diagnosis for over 44 years. She has acquired the first ever Dual Diagnosis Certified Clinician credential awarded by the National Association for Dual Diagnosis. Robin is an Eye Movement Desensitization Reprocessing Therapist and has received a certificate in Trauma through Drexel University. Robin is the Co-chairperson of the NADD-CC committee and assisted in formulating a certification in Dual Diagnosis for clinicians (NADD-CC). Robin has served as the Clinical Director for the Commonwealth of Pennsylvania, Department of Human Services, Office of Developmental Disabilities, Central Region. She is the former Vice President of Integrative Counseling Services, PC in Harrisburg, PA. In 2019, Robin won the NADD Earl L. Loschen Award for contributions that have resulted in significant improvement in the quality of life for individuals with intellectual and developmental disabilities as well as mental health needs. Robin has developed the Risk Screening for Best Practices Tool. She is a subject matter expert on Fetal Alcohol Spectrum Disorder “The Invisible Disability” and has articles published on the topic. Robin administers sexuality assessments for consent, knowledge, and attitudes. She also administers trauma informed assessment for people with problematic and sex offending behavior. She is currently the Executive Clinical Director for Merakey Pennsylvania, NJ, DE & VA and assists with consultation services that include New York, and California.
Robin VanEerden, MS, LPC, NADD-DDS, CC
Executive Clinical Director, National Presenter, Co-Chair of NADD Clinical Certification Committee
Merakey Intellectual Disabilities Services Division