The 10 Commandments of Working with Youth Impacted by Fetal Alcohol Spectrum Disorders

Learn more about working with youth impacted by Fetal Alcohol Spectrum Disorders. Photo: iStock

According to the Center for Disease Control, Fetal Alcohol Spectrum Disorders (FASD) impact between 2 to 5 percent of the general population in the United States. When working with children who have come from homes where parents abuse alcohol and other drugs, the prevalence rates are going to be significantly higher.

This issue is being taken seriously by two senators who are proposing funding to help study the impacts of FASD. Presidential hopeful Sen. Amy Klobuchar (D-Minn.) and Sen. Lisa Murkowski (R-Alaska) introduced the Advancing FASD Research, Prevention and Services Act that would amend the Public Health Service Act to include $42 million for research and services grants focused on Fetal Alcohol Spectrum Disorder (FASD).

In the meantime, many professionals working in the field of child protection and foster care receive minimal training on how to identify individuals impacted and even less training on how to support individuals who are impacted.

Here are a few tips for foster parents and others working with children who might be impacted by FASD.

1. Always screen for prenatal alcohol exposure. At any point in the pregnancy, alcohol can impact developing cells. Alcohol is a teratogen, meaning that it alters and/or kills developing cells. Many providers do not do an adequate job of screening for alcohol because they simply ask the mother, “did you drink alcohol during your pregnancy?” A mother may answer “no” for a variety of reasons when in fact there was prenatal alcohol exposure. As foster parents, as you have the opportunity to get to know the parents and build rapport with them, you can ask the following questions to get to the truth of whether there was prenatal alcohol exposure. Asking the mother and father regarding their lives during the year they were pregnant will provide a fuller picture of what substance use was occurring around the time of conception and during the pregnancy. Ask broad questions such as, “during that time of your life, how often were you using alcohol and other drugs.” Follow that up with asking specifics regarding “the types of drugs, the amount consumed, how far along were you when you found out you were pregnant, what changes did you make in your life once you discovered you were pregnant.”

2. Advocate for a referral to a diagnostic team. If you have an FASD Diagnostic Team available in your area, advocate for a referral to the diagnostic team to determine if the youth is impacted by FASD. The diagnostic team will provide a multi-disciplinary approach to discover how the brain is impacted by the prenatal exposure to alcohol. The team includes a physician, a psychologist, a speech therapist and either a physical therapist or occupational therapist. In areas where a diagnostic team is not available, having each of the specialists in those areas assess impacts is helpful in determining how the brain has been impacted and the best way to provide accommodations for the youth. Working with an individual who experiences FASD without this information is difficult and potentially sets up the individual and everyone who works with the individual for failure.

3. Identify the primary symptoms. Each individual whose brain is impacted by prenatal exposure to alcohol is going to have their own unique strengths and deficits. Using the diagnostic team’s report so you can understand which of the following areas are impacted and how impacted they are will be helpful in building the appropriate accommodations for the youth.

a. Dysmaturity — the youth is not developmentally at their chronological age, specifically when addressing adaptive life skills.
b. Sensory processing differences — they may seek out sensory information, avoid sensory information, or be unable to process the sensory information that they receive.
c. Language processing differences — specific areas for consideration: expressive language, receptive language and social language.
d. Processing speed — how long it takes the information they receive to process through the brain and for them to act upon the information received.
e. Working memory — the ability to hold information in working memory long enough to use it.
f. Executive functioning impacts high-level complex thinking: such as problem solving, abstract thinking, generalize information from one situation to another, identify cause and effect, impulse control, etc.
g. Fine and gross motor differences as well as coordination problems may impact the ability to do tasks that require coordination and motor control.

4. Meet the brain where it is at. Once the physical symptoms have been identified, caregivers can start building environmental accommodations (examples below) to decrease the impact of secondary behavioral symptoms. For instance, if a youth has fine motor control and coordination issues, a scribe can write their answers or provide them with talk-to-text, decreasing time spent writing down answers. The secondary behavioral symptoms are the behaviors that will often bring the individual with FASD to the attention of service providers. A brain impacted by prenatal alcohol uses significantly more energy to complete the same tasks as a neurotypical brain. Individuals with FASD will become easily tired and fatigued which may lead to increased frequency of irritation. When FASD is not recognized, youth will often experience negative consequences for their brain differences which causes increased anxiety. This buildup of anxiety, frustration and anger often sends the individual into a fight, flight or freeze response resulting in avoidance, shutting down, depression, isolation, aggression and self-harm. When accommodations are provided, the brain is supported and there are fewer secondary behaviors.

5. Meet them at their stage of development and not their chronological age. Since the majority of individuals who experience FASD will have dysmaturity, it is important to remember to meet them at their stage of development. If their adaptive living skills demonstrate that they are very proficient 7-year-olds we help them become very proficient 8-year-olds even if they are chronologically 13 years old. If caregivers push them to become proficient 13 year olds before their brain has the connectivity to be so, it will cause the brain to become overly fatigued and lead to the secondary behaviors that are described above. When the impacted brain is helped to move along its natural developmental procession, staying out of fight, flight and freeze, the learning progresses more quickly.

6. Work with the occupational therapist to ensure that the sensory needs are being met. The sensory system is vital to our survival and ability to learn and grow. If the sensory system is not getting enough information it will seek out that information. On the other hand, if the sensory system is receiving too much information then it will avoid that information. Providing the sensory system with the right amount of information will allow the brain to direct more resources to the higher functioning brain tasks such as learning, social engagement and executive functioning.

7. Prevent secondary symptoms by providing accommodations.
a. Utilize a strength-based approach.
b. Recognize times the brain simply “cannot” complete the task as opposed to oppositional “won’t.”
c. Be the external brain — constantly be two steps ahead.
d. Adjust expectations.
e. Allow time for processing speed — in some individuals this can mean up to 60 seconds.
f. Keep it simple.
g. Pre-teach.
h. Food and water every two to three hours.
i. Visual cues.
j. Create consistent structure and routine.
k. Recognize this list is not exhaustive.

8. Repeat, repeat, repeat and repeat again, again and again. Given the differences to the brain, it can take a long time for the brain to learn the information, and once learned reliably, be able to access the information to act upon it. Repetition is vital to success since it can help with the learning process as well as the retrieval process.

9. Extend grace. By doing this, it allows us to recognize that everyone is doing the best they can with the information and skills they have.

10. Educate everyone. This is vital to the success of those impacted by FASD. Although FASD is three times as common as Autism Spectrum Disorder, many individuals simply do not have information and training on how to best support those impacted. To find out more information about FASD, download fact sheets, and find trainings, here.

Tami Eller, MS, is a lifelong Alaskan who is a certified FASD 101, 201 and FASD into Action trainer.  

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