Elements of Success: Helping Individuals with

FASD and Co-occurring Disorders

Dumas Bay Retreat Center – FAS*FRI Conference

September 25, 2007

Cognition and Behavior

Notes from Presentation by Ann Streissguth. Ph.D


 “The brain is the most vulnerable organ affected by prenatal alcohol exposure.”


Riley and Driscoll’s study in 1990 showed that the behaviors that we see in children with a history of prenatal exposure to alcohol are the same as those seen in animals exposed to prenatal alcohol, so we know these effects are caused by alcohol independent of environmental factors.  There are reports that show evidence of alcohol effects in monkeys and fruit flies.  Someone stated that a study with spiders exposed to different substances, where alcohol had the most adverse effects of all.


“FASDs are birth defects of the brain.”  We set up diagnostic clinics, but we are getting the children too late, they are missing out on the early intervention services that can make a big difference in outcome later.  Countries like Sweden that have health care for all do not have a big problem with FASD because it is dealt with in prenatal care.  In the U.S. we have more problems with FASD and we have a very high death rate for babies.


Testing:  WISC, WAIS, WRAT may not show the severity of deficits in FASD.  When doing the VABS on individuals with FASD, the score is 2 standard deviations below the person’s own IQ, and even more so when compared to general population.  IE, IQ of person with FAS might be 80, and the Vineland score would be 60.


The Fetal Alcohol Behavior Scales (FABS) designed by Streissguth is based on behaviors observed in those with a diagnosis.


Behavioral Phenotypes:


·         Poor Habituation (difficulty modulating incoming stimuli)

1.      Becomes over stimulated in social situations

2.      Over-reacts to situations with strong emotional response

3.      Has mood swings set off by small things

4.      Has poor attention span

5.      Has trouble completing tasks


·         Poor cause and effect reasoning in social situations

1.      Unaware of consequences of own behavior

2.      Poor judgment about whom to trust

3.      Interrupts with poor timing

4.      Cannot take a hint

5.      Wants to be the center of attention


In persons who have a diagnosis of an FASD but have a normal IQ, scores are below normal in certain attention tests: COWAT (shifting sets), RUFF (perseveration), CVLT (free recall intrusions, adds to stories).  In some attention tests, they do well while there are no distractions, but when distractions were added, they scored 1-2 standard deviations below normal.


FASD does not fit the MR model, but it fits better with the model for Traumatic Brain Injury.


In persons with FASD, problems with Executive Functions are much worse than those with similar IQ.


Clinical Implications for Adolescents and Adults with FASD

Difficulties they have                             What this means for them:

Poor judgment                                      Easily victimized (and then becomes victimizer)

Attention deficits                                   Easily distracted

Poor math skills                                    Cannot manage money

Memory deficits                                    Difficulty learning from experience

Difficulty abstracting                             Cannot figure out the consequences

Disoriented in time and space                Misses social cues

Frustration tolerance                             Quick to become angry


Longitudinal Study of Individuals with Prenatal Exposure to Alcohol:

Infancy outcomes show poor suck, latency in beginning to such (delayed response to nipple), poor reflexes.  Leading indicator is poor habituation to light, which is related to later learning disorders.


Bayley scales on babies at 18 months did not detect effects.  This is NOT the time to test.

At 4 years of age, we can detect difficulties in areas of attention, arithmetic, processing time, latency to correct errors, poor balance, perseverance, verbal interruptions, hypertonic (some can be hypotonic).


From age 4 to 14, behavioral differences are seen in laboratory (blind tests) in these areas: distractible, uncooperative, rigid, seeks reassurance, disorganized, impulsive (14).


Teacher rating shows problems with cooperation, impulsivity, memory, attention, unpredictable behavior.  The same results were observed at 21 years of age.


We have failed in identification of FASD in time for early intervention to prevent secondary disabilities.  We have failed in getting relevant help when they are in the institutions and facilities when they are most vulnerable (schools, mental health, criminal justice system).  And we have failed to provide adequate services and supports for the families caring for then.



Funding for Public Health Model to initiate Neonatal Health Study to look at the corpus callosum of newborn through fontanel ultrasound ($150, nonintrusive, mother can observe and be informed immediately to access early intervention services).  Pilot study shows ability to accurately detect FASD in half of newborns prenatally exposed to alcohol.


States need to initiate the following:

·         Residential program and transitional resources for affected individuals

·         Training in Behavioral Health System

·         Screening programs to identify FASD in persons getting mental health services and measure outcomes

·         Screen newborns with fontanel ultrasound (described above)

·         Provide services and supports to families caring for children and adults with FASD




FASD in the Adolescent Developmental Process

Notes from Presentation by Dr. Charles Huffine

Dumas Bay Conference Center – FAS*FRI

September 25, 2007


Behavior is the language of adolescence, the primary medium.


Parents job is sometimes to put the breaks on what they do.  Adolescents need an arena of safety and supervision in which to explore.  When they don’t have this, things can go wrong (poverty, obesity, disability, etc.)  Overprotection and underprotection can both have potential to be damaging.


FASD is a cause of distress in adolescence.  There is a large variability among youth with FASD.


FASD in teens: what should parents do?

·         Good assessment of strengths and needs

·         For those whose children have severe intellectual and medical disabilities:

·         Find or create resources where the child can maximize the adolescent process

·         Help child accept their realities and work around them, recovery process

·         Demand resources from schools, medical care, mental health, eventually developmental disabilities.


Youth with more subtle disabilities:

·         Be aware of your child’s capacity to exercise judgment, for social learning.

·         Exercise higher degree of caution based on assessment of capabilities.

·         Flexible approach: accept that growth can occur, negotiate and reassess continuously.

·         Youth with FASD make mistakes, but it’s not always the end of the world.  (You can celebrate that they are out there being kids.)


We may over assess the risk of alcohol use and drug use among teens.  Marijuana is far less dangerous for youth.


Reactivity vs wisdom in dealing with emerging sexuality.


Face fear of juvenile justice system, discipline, neighbors’ judgment.


What teens with FASD should do:

·         Push as hard as you can to have freedom to take usual teen risks (if they don’t, they are probably depressed).

·         Try to figure out the “rules” in social groups and ways infractions are punished by teen sanctions

·         Find adult mentors with whom to figure out confusing social dilemmas (older adults mentor younger kids, like the crazy aunt that the kids love)

·         Come to understand one’s “wiring” presents risks for impulsivity, judgment, and being slow to learn

·         Maximize assets: i.e. charm, desire to please, being cute or strong, talents


Things that teens with FASD should do but are often reluctant:

·         Accept help at school from tutors, resource rooms, special ed

·         Using trained mental health professional as an adult mentor

·         Negotiate with parents based on common understanding of the problems

·         Learn from constructive peer feedback

·         Accept, normalize, learn about FASD




Neuropsychological Issues in Fetal Alcohol Syndrome

Notes from Presentation by Gayle Fay, Ph.D.

Dumas Bay Conference Center – FAS*FRI

September 25, 2007


Neuropsychological Issue: Arousal


Two kinds of arousal are generated by the mind’s reaction to the environment:

·         Energy to focus and concentrate

·         Energy to fight, flee, or freeze (reaction to stress)


The latter has the capacity to obstruct the former.  Children with FASD are often under great stress.


When a child or adolescent is overloaded with arousal, they cannot actively pursue choice.


When the circuits are overloaded, their ability to make sensible decisions is virtually nonexistent.  They will become increasing impulsive, disorganized, and inappropriate.


Neuropsychological Issue: Attention/Concentration


·         Crucial for nearly all cognitive abilities

·         Defined as “online maintenance of convergent information coming from different modalities:

·         This is managed on the neurological level of the brain and very difficult for a person with brain injury.

·         Attention is not a single or isolated cognitive function

·         Selective/focused attention requires the ability to:

o       Resist distraction

o       Sort though information

o       Identify the relevant elements of the task

·         Sustained attention: ability to keep one’s mind on the job

o       Attention switching (dual attention)

o       This is not obsessive behavior, but is rigid behavior.

o       They can manage to keep their attention for about 4 to 6 minutes.


Neuropsychological Issue: Thinking and Problem Solving in the Real World


·         Poor abstract thinking (reasoning)

·         Know-do dissociation (“He knows what to do because he told me exactly what he was supposed to do.”)  Coach them through the exact performance of the endeavor.

·         Inability to transfer, generalize information (generalizations have to be absolutely and specifically taught)

·         Poor judgment and decision making


Safety has to be a critical goal on the IEP for students at all ages.


Neuropsychological Issue: Speed of Thinking and Synchronization


·         Lengthy latency to response

·         Slowed uptake and assimilation of information (teacher is on D,E,F and student is still working out A,B,C; television show, may lag processing what they are watching)

·         Unduly rapid uptake and assimilation of information; unduly rapid output of information (non-reflective response style) (inappropriate behavior and out-of-context information)


Neuropsychological Issue: Self Regulation


·         Biological: Inability to regulate arousal (neurofeedback helps them learn to modulate arousal, at least gives them an idea of what a stable arousal state feels like)

·         Neuropsychological Issue: Self Regulation – Behavioral

·         Impaired monitoring of behavior (reality testing) 

·         Excessively bound by environment cues (cannot think beyond the situation, therefore easily manipulated)

·         Distorted internal models of past, present, and future environments (cannot draw on prior experience)


They can be coached by specific, nonjudgmental cues to respond appropriately.


Neuropsychological Issue: Speech Language Skills


·         Impaired auditory processing

·         Issues with retrieval and elaboration

o       Use fewer words

o       Use phrases instead of sentences

o       Reduced content


Neuropsychological Issue: Memory


·         Inextricably intertwined with arousal, attention, cognition, and emotion

·         Systems: episodic, visual, verbal, procedural (memory for rules and algorithms)


Neuropsychological Issue: Working Memory


·         Manipulation of online information

·         Relate information to experiential base

·         Ability to reorganize mental context


Neuropsychological Issue: Thinking Flexibly


·         Cannot shift focus between external events or between external events and internal representation

·         Results in perseveration (repetitive responses) (hyper-arousal from stress = stuck)


Behaviors we see are neurological, not psychological


Neuropsychological Issue: Physical/Mental Endurance


·         High levels of arousal, challenge, and anxiety sap physical and mental endurance

·         Many FAS children show heightened levels of hyperactivity when endurance is low


Neuropsychological Issue: Social Pragmatics/Social Communication


Requires superb executive and information processing skills (recognition of subtle social cues).  Not impossible, but needs to be embedded into their neurological program from an early age.



Through the Lens of a Child Psychiatrist

Distinguishing FASD from Other Co-occurring Disorders

Notes from Presentation by Dr. Susan Rich (MD, MPH)

Dumas Bay Conference Center – FAS*FRI

September 25, 2007


Dr Rich is an MD and also MPH, board certified psychiatrist in Washington DC and describes herself as an impassioned person on a journey who offers her resources in the area of health policy on a national basis.


Link between ADHD and FASD


·         Clinical subtype of FASD may exist within the population of individuals with ADHD

·         Nearly every individual with FASD has some form of attention deficit

o       Caution in use of stimulant medications for individuals with co-morbid heart conditions

o       No well-controlled clinical trials in this population (comparing FASD to garden-variety ADHD)


Other Psychiatric Disorders


·         OCD co-occurring with Tourette’s syndrome may be more common in individuals with FASD

·         Autistic behaviors have been noted in younger children and school age children prenatally exposed to alcohol HHS report to Congress, June 2000)

·         There is a subset of children with diagnosis of Autism who should be considered for FASD


Functional Birth Defects:

·         Learning disorders

·         Mental retardation

·         Developmental disabilities

·         Language difficulties

·         Attention deficits

·         Behavioral disorders


One standard drink per day in pregnancy is linked to attention deficits in the child


Public health Issue:  Need to prevent the Epidemic caused by our social drug of choice!!!  Focus on Preconceptual Health.


Common Behaviors in ARND

·         Agression

·         Impulsivity

·         Hyperactivity

·         Hyper-reactivity

·         Emotional chameleons


Common secondary disabilities in children and adolescents with ARND

·         Peer pressure (boys become delinquent, girls have unintended pregnancies)

·         Easily victimized child abuse, incest, abduction)

·         School failure

·         Trauma and injuries






FAS Community Resource Center