Who Should Perform an Evaluation of a Person Diagnosed With or Suspected of Having an FASD?

FASD causes brain and CNS (central nervous system) impact/damage. It is lifelong and permanent. It affects each person’s functioning in unique ways; no two individuals are affected by prenatal alcohol exposure in exactly the same way.

Neuropsychologists are highly trained and specialize in the study of brain and behavior using techniques that go beyond the standard psychological evaluations.

Neuropsychologists are able to make inferences about presence or absence of brain dysfunction, including strengths and weaknesses.A neuropsychological assessment is the most “accurate and valid” means to determine the extent of an individual’s cognitive (mental comprehension) impairment and in the detection of neuropsychiatric (brain-based emotional or behavior) disorders and dysfunctions.

Standard psychological and psycho-educational evaluations using standardized test batteries, while useful, are not sensitive to the effects of brain damage and are not designed to identify changes in a person’s neurocognitive functioning over time; in addition, they do not go beyond determination of I.Q or academic level.

A comprehensive neuropsychological assessment should be complemented by medical evaluations, including genetic screening and neurological evaluations, to identify or rule out other conditions that may cause similar or overlapping signs or symptoms as FASD, including seizure disorders, cerebral palsy, and certain genetic conditions. However, neuropsychological assessments offers more detailed information about higher cognitive functioning, and help families make planning and treatment decisions for their loved one affected by prenatal alcohol exposure.

Nations and tribes share concerns about increasing financial and social costs associated with FASD. These include: health care costs, high rates of homelessness, unemployment, alcohol and drug use, rates of incarceration, needs for special education, and providing family support services.

Therefore, throughout the United States, Canada, and other Western countries, research into FASD emphasizes prevention.

For example, in the U.S., the Centers for Disease Control and Prevention (CDC) works with partners across the country to develop systems to monitor FASD exposures and outcomes, conduct epidemiological studies and public health research to identify maternal risk factors associated with giving birth to a child with an FASD, and implement and evaluate FASD prevention and intervention programs. It conducts research into:

• Monitoring Alcohol Use
• Tracking Fetal Alcohol Syndrome (FAS)
• Preventing Alcohol Use During Pregnancy
• The Existence of and Effectiveness of Strategies to Prevent Drinking While Pregnant (Intervention Strategies)

For information about FASD prevention research in California, contact:
Tara Torrant Murphy
Department of Alcohol and Drug Programs
Office of Women and Perinatal Services
1700 K Street
Sacramento, CA 95811-4037
916-322-0495
916-324-4886 Fax
tmurphy@adp.ca.gov

According to The Arc, research indicates that FASD cannot be cured.

However, there is research indicating that that some kinds of supplements may help to reduce the effects of alcohol on brain function.

Does the research show what kinds of treatment work for persons with FASD?

Research shows that there are services that can help persons diagnosed with FASD to maximize their potential.  They will benefit from early diagnosis and intervention services, and from an individualized education program in school that includes preparation for transition from school to work and possible further education.

People with FASD benefit from one-on-one counseling support more than in group counseling. Individualized coaching (show me, don’t tell me) often works better than traditional counseling.

Identifying possible buddies (e.g., family, friends, church or other organizations), to ensure the FASD-affected person gets to their appointments, etc., is often helpful.

Establishing a mentor/coaching approach can work well since the person with FASD typically is more of a follower, is easily influenced by others, and likes to please others.

Individuals affected by FASD often require intensive service coordination if they do not have someone who can coordinate the services they need, such as on-going individual therapy, job coaching, housing, and transportation.  They often need much direct hands-on support.

Changing the environment to add structure, support and supervision  is an approach that frequently brings positive consequences into the lives of both the individual with FASD and his or her family or caregivers.

Research shows that being clear, direct and careful with communication helps greatly; Be literal instead of abstract, use short sentences, and pause after completing each thought, when talking with a person affected by FASD. Use pictures and objects to further illustrate concepts and appropriate actions.

Persons with FASD need time to adapt; prepare the individual for transitions and changes early and often.

Many parents of children and teens with FASD report that nutritional changes and/or medication produce positive benefits to their affected children’s challenging behaviors, including angry outbursts, difficulty sleeping, or problems with attention and concentration at school.

There is consensus among experts that individuals with FASD will remain unable to stay organized or focused, and will stay easily influenced by others, throughout their lives. They will continue to exhibit a limited capacity to exercise good judgment, anticipate consequences and stay safe. Therefore, they will need long term external structure, support and supervision.

Does the research show what kinds of treatment do not work well for persons with FASD?

Traditional psychotherapy (“cognitive behavior therapy” or “talk therapy”) and any type of counseling in group settings, does not usually work well with persons affected by FASD, due to their memory and receptive language processing difficulties. Other types of treatment, training, or intervention which also rely on verbal and receptive language processing include:

• Parenting skills training
• Elementary and secondary education
• Child welfare interventions
• Judicial system interventions
• Treatment programs which include:
  • Motivational interviewing
  • 12-Step group (e.g., AA/NA) participation
  • Wilderness components
• Awareness or prevention campaigns
• Zero-tolerance programs. Zero tolerance policies (e.g., halfway houses or drug-treatment programs) increase the of risk of people with an FASD being homeless, jailed, or without any services.

Rewards-based systems (e.g., point, level, or sticker systems) don’t work well when the individual has a hard time understanding the misbehavior in the first place, or has difficulty postponing gratification, understanding the concept of “value for effort”, etc.

Useful Links

Fetal Alcohol Spectrum Disorders: Experimental Treatments and Strategies for Intervention

FASD Intervention Strategies from the Family Empowerment Network

Strategies for Effective Intervention and Support

Living and working with Toddlers & Preschoolers with Fetal Alcohol Spectrum Disorders

Living and working with Children with Fetal Alcohol Spectrum Disorders

Living and working with Adolescents with Fetal Alcohol Spectrum Disorders

Fetal Alcohol Spectrum Disorder – Thoughts on Management in the School Setting

Behavior Environmental Adaptation Model (Word Document)

Fetal Alcohol Spectrum Disorder Treatment, State of Maryland Information

Effective Behavioral Treatment for Persons with FASD

Generally, people with FASD have positive traits which mask their cognitive challenges. They are often:

• Likeable
• Highly verbal and may be good storytellers
• Bright in some areas
• Have points of insight
• Artistic, musical, mechanical
• Athletic
• Friendly, outgoing, affectionate, even cuddly
• Determined, persistent
• Willing
• Hard worker
• Helpful
• Generous
• Good with younger children or animals
• Not a malicious bone in their body
• Willing to forgive; don’t hold grudges
• Every day is a new day
• Caring
• Non-judgmental; like people for who they are, not for what they have or what they can offer. Often protect weaker kids from bullies.

Principal
Dr. Mansfield Mela
Department of Psychiatry, College of Medicine, University of Saskatchewan

Current research study by Dr. Mela and a team of 12 multidisciplinary international experts to develop a decision-tree style medication algorithm to guide prescribers as they see patients with Fetal Alcohol Spectrum Disorder/Neurobehavioral Disorder Associated with Prenatal Alcohol Exposure (FASD/ND-PAE).

This algorithm is the first-ever treatment recommendation of psychotropic medications for FASD/ND-PAE.

It is based on all available evidence (albeit very limited), which was consolidated in a recently-published systematic review (Mela M, Okpalauwaekwe U, Anderson T, Eng J, Nomani S, Ahmed A, Barr AM. The utility of psychotropic drugs on patients with Fetal Alcohol Spectrum Disorder (FASD): a systematic review. Psychiatry and Clinical Psychopharmacology. 2018:1-10).

From there, the algorithm was developed by considering the evidence and incorporating the clinical perspective of the expert panel.

Now that the algorithm is developed, it needs to be evaluated to understand the effectiveness and allow for improvements for future iterations.

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Jeff Noble | Noble Initiatives Interview with Dr. Mansfield Mela

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