1. The Anchorage FASD Diagnostic Team
Susan Kaplan, PhD, OT/L
Alaska LEND November 14, 2013

2. Fetal Alcohol Spectrum Disorder
Fetal Alcohol Spectrum disorder (FASD) is the leading, known, preventable birth defect in the United States.
FASD is caused by maternal consumption of Alcohol during pregnancy
Alcohol destroys growing and developing cells in the fetus, causing permanent damage and malformations to the brain, and to other organs in the body

3. FASD is permanent. It cannot be “outgrown” or cured.
FASD causes a person to have life-long physical, developmental, intellectual, psychological and emotional challenges
FASD affects individuals, families, schools and entire communities.
Symptoms described change with age, and may require medical management or other therapy

4. Fetal Exposure to Alcohol
Alcohol can affect the fetus at ANY point in pre natal development
Area of Damage is determined by what system or organ is being developed at any specific time of exposure.

5. FASD First described in the 1970’s Broadly characterized by:
“pre and or post natal growth deficiency, a characteristic set of minor facial anomalies, and evidence of prenatal alteration in brain function such as microcephaly from birth, neurologic problems without postnatal antecedents, or complex patterns of functional disability.” (Sterling K. Clarren, MD and Susan J. Astley, Ph.D., Diagnostic Guide for Fetal Alcohol Spectrum Disorders and Related Conditions, 1997)

6. The Diagnosis of FASD The diagnosis of FASD is a medical diagnosis.
This diagnosis requires specific evidence of
A. Facial Features
B. Evidence of Growth deficiencies
C. Evidence of impact on the Central Nervous System, or brain of the individual
D. Documented evidence of pre-natal exposure to Alcohol.

7. Findings may include:
Low Birth Weight
Impaired Growth before and after birth
Facial Malformations
Small Head Size
Learning Disabilities and Lower IQ
Hyperactivity or Attention Difficulties
Sleeping Problems
Evidence of Organ damage

8. Secondary Disabilities in FASD
This list is not all inclusive!
Secondary disabilities include:
Mental Illness
Legal problems, delinquency and incarceration
Alcohol and drug use and abuse
Deviant sexual behavior or victimization by same
Homelessness and joblessness
Risks for traumatic brain injury (due to inherent
coordination and balance issues)

9. Costs to society
Failure to recognize and diagnose has significant financial cost to families and society as a whole, as well as significant emotional cost to families.
Each year, an estimated 40,000 babies are born with FASD, which correlates to 1-3 per live births, and costs the United States about $4 billion annually (University of Washington, FAS Diagnostic and Prevention Network)

10. Diagnosis of FASD is not a simple process
FASD has 256 Diagnostic Codes which can be assigned to any individual.
These 256 Codes are grouped into 22 different Diagnostic Categories.

11. Diagnostic Categories
A. Fetal Alcohol Syndrome (ETOH exposed)
B. Fetal Alcohol Syndrome (ETOH exp unknown)
C. Partial FAS (ETOH exposed)
D. FAS Phenocopy (no ETOH exposure)
E. Sentinel physical finding (s)/static encephalopathy (ETOH exposed)
F. Static encephalopathy (ETOH exposed)
G. Sentinel physical finding (s) /Neurobehavioral disorder (ETOH exposed)
H. Neurodevelopmental disorder (ETOH exposed)
I. Sentinel physical finding (s) (ETOH exposed)

12. J. No sentinel physical findings or CNS abnormalities detected (ETOH exposed)
K. Sentinel physical finding (s) /Static encephalopathy (ETOH exp unknown)
L. Static Encephalopathy (ETOH exposure unknown)
M. Sentinel physical finding (s) /Neurobehavioral disorder (ETOH exposure unknown)
N. Neurobehavioral disorder (ETOH exposure unknown)
O. Sentinel physical finding (s) (ETOH exposure unknown)

13. P. No sentinel physical findings or CNS abnormalities detected (ETOH exposure unknown)
Q. Sentinel physical finding (s) / Static encephalopathy (no ETOH exposure)
R. Static encephalopathy (No ETOH exposure)
S. Sentinel physical finding (s) /Neurodevelopmental disorder (no ETOH exposure)
T. Neurobehavioral disorder (No ETOH exposure)
U. Sentinel physical finding (s) (No ETOH exposure)
V. No sentinel physical finding (s) or CNS abnormalities detected (no ETOH exposure)

14. FASD and Alaska
The Alaska statewide FAS prevalence rate is 1.4 per live births. According to the Alaska Birth Defects Monitor, July 2010, an analysis of data for Alaska births during , showed a 32% decrease in FAS birth prevalence from 19.9 to 13.5 per 10,000 live births (Schoellhorn, 2010)
Native births experienced a 49% decline (from 63.1 to per 10,000 live births) and non Natives had non significant increase in numbers over the same period of time.
Additionally, infants are born that are identified as being affected by maternal alcohol use during pregnancy (they are impacted, but do not fit the criteria for full diagnosis of FASD
Infants born affected by prenatal drug ingestion do not meet the criteria for FASD classification, but can be equally, or more affected

15. Formation of the AK FASD Network
In 2000, The State of Alaska received federal SAMHSA (Substance Abuse and Mental Health Services Administration) funds to begin a 5 year effort to address the state wide impact of FASD.
14 FASD Diagnostic teams were formed

16. Anchorage FASD Team
1st team was based at ANMC and was for Natives only.
An initial team was also started at API (no longer functioning)
In September 2009, the Alaska Mental Health Trust gave start up funds for a second team in Anchorage, for evaluation of non native individuals

17. The current Anchorage FASD team is the one formed in 2009
The current Anchorage FASD team is the one formed in The first client seen was in Spring 2010, and the first diagnostic meeting was held on May 21, This team will accept native and non native individuals for evaluation. It is based out of “ASSETS”.
The FASD team based out of ANMC and run by South Central Foundation is not being run as it was initially set up. It continues to see patients on a limited basis. It is no longer funded by the State of Alaska.

18. FASD Team Membership
Team Coordinator: receives all initial referral paperwork for screening. When complete, the coordinator makes individual referrals to team members for medical evaluation, and OT, PT, Speech and Neurodevelopmental testing and evaluation. After the evaluations are completed, the coordinator compiles all related testing, and schedules a discussion of this individual for the multidisciplinary team. After the team meeting, the coordinator compiles all final paperwork for signing and submission, and coordinates a time for presentation of findings with the guardians of the individual.

19. Nurse Practitioner:
The Nurse Practitioner on the Anchorage team is either a certified Pediatric Nurse Practitioner or a Family Nurse Practitioner. The Nurse Practitioner is responsible for reviewing all past medical records and growth charts for the client since birth, and any medical information available on the biological mother; all previous testing done on the client by any other specialty; all available school records; any other documentation available which supports this clients evaluation by the FASD team
The NP then compiles this information within one health history.

20. The NP examines the child and documents all findings.
Photographs are taken at the time of this examination, and are analyzed using the University of Washington FAS Facial Photographic Analysis Software . The NP has had to complete training and obtain certification using this software program.
The findings of this exam and the photographic analysis are presented to the group at the multidisciplinary meeting.

21. Psychologist : The team psychologist (clinical, developmental, educational, etc.) should have a M.S. or Ph.D.
Duties:
Responsible for all neurodevelopmental testing done with the client.
Responsible for participating in the chart review and in abstracting and interpreting previously obtained psychological reports and records.
May participate in the collection of the social and behavioral histories.

22. Occupational Therapist:
The Occupational Therapist performs a variety of assessments which may include:
Tests of motor abilities (gross and fine motor)
Tests of cognitive abilities including executive fx
Tests of sensory issues- usually using the Sensory Profile
Tests of visual perceptual/motor skills such as the Beery VMI, the Test of Visual Motor Skills, the Hooper Visual Organization Test, or the Motor-Free Visual Perception Test. These tests help to determine if a person can coordinate visual and motor skills, visual spatial abilities, and analysis of visual stimuli.

23. Examples of test items
Example above is an item from the Beery Test of Visual Motor Integration (Beery VMI)
The task requires the client to copy the design on the top onto a blank space at the bottom.
This example is one of the harder items. The image above has two trials from one client, with one month between efforts. The second effort is much better, but still not accurate.
The example shown above is from the Hooper Visual Organization Test. If you put these pieces together, what is the object?

24. Example of Sensory Profile Scores
This child appears typical in every area except for inattention/distraction

25. Tests for Teenagers and Adults
Texas Functional Living Scale: looks at many areas of Instrumental activities of daily living (IADLs) including time, money and calculation, communication, and memory.
Reading-Free Vocational Interest Inventory (example shown at right)
Tennessee Self-Concept Scale: provides overall measure of self-concept and areas of conflict.
Quality of Life Inventory: yields an overall score and a profile of problems and strengths in 16 areas of life such as love, work and play.

26. Contextual Memory Test
Client has 90 seconds to view picture, then has to name as many items as he can remember.
Immediate memory plus recall after minutes.
Also allows some evaluation of client’s insight about memory problems.
Memory impairments can cause great difficulty in occupational performance of everyday tasks

27. Physical Therapist:
The Physical Therapist evaluates the client’s motor abilities including:
Gait problems
Incoordination
Balance
Trunk alignment
Navigating on uneven surfaces and stairs
Safety issues
Need for mobility aids

28. Speech/Language Pathologist:
The speech and language specialist should be a Speech and Language Pathologist at the M.S. or Ph.D. level with training in assessment and implementation of speech and language issues.
Duties
Conduct speech and language assessments with all patients.
Participate in team meetings and help develop the treatment plan.

29. Special Needs Parent Educator or Navigator:
Currently a representative of the Stone Soup Group.
The Parent Navigator
1. Should be the parent (birth, foster, or adoptive) of a child with FASD.
2. May be a member of an appropriate family advocacy program (e.g. FAS Family Resource Institute, PAVE, ARC)
Duties:
1. Help identify appropriate referrals in the community.
2. Help explain the clinic process and “prepare” uncertain families for their appointments.
3. Work with families after the clinic appointment to help implement the treatment plan by identifying human and financial resources.

30. The 4 Digit Diagnostic Code
Created first in 1997 to address the limitations found in diagnosing FASD by purely observation, which is highly subjective.
Provided criteria for more standardized evaluation and measurements of specific characteristics in those people being evaluated for FASD- made observations and findings much more objective
Quantitative more than Qualitative criteria

31. The 4 digits signify the amount of expression of specific and key diagnostic features of FASD in the person being evaluated, and are presented in a specific ordering sequence
First Number = Evaluation of Growth Deficiency
Second Number = The FAS Facial Phenotype, as analyzed by the FAS Facial Photographic Analysis Software
Third Number = CNS abnormalities
Fourth Number = Prenatal Alcohol Exposure

32. These individual observations are ranked independently of each other, and defined on a 4 point Likert scale, with 1 reflecting absence of the feature, and 4 representing strong findings.
There are 256 possible 4 Digit diagnostic codes grouped into 22 different diagnostic categories.

33. Why Use the 4 Digit Code?
Increased quantitative measurements and reporting system…used independently from subjective observations
Use of systematic measurement increases precision in diagnosis
Systematic measurements and reporting system is logical, and finds a “fit” for all possible scenarios.

34. Reflects the entire continuum of the disorder
Can be used in all ages ,races, and ethnicities
Documents the presence of known prenatal alcohol exposure and is not judgmental in it’s descriptors
Documents other prenatal and postnatal exposures and events that can significantly impact the outcome of development
Provides a way to teach many health care and social service professionals a standardized way of reporting, which increases the availability of diagnostic services, and reliability of diagnoses given

35. Ranking Growth
Done to look for a growth deficiency characteristic of a “teratogenic event”, exposure to a toxin strong enough to alter physical development
This measurement does not take into account environmental events post birth including illness or nutritional deficiencies.

36. Height Percentile– Age and Gender Adjusted
When both parent’s heights are known, adjustment is made for mid parental heights.
Weight Percentile - Age and Gender Adjusted, but weight is NOT adjusted for Height
Rank the Height and Weight deficiencies based on the growth record with the greatest deficiency in the HEIGHT percentile

37. A-B-C scores are assigned for Height and Weight at specific Percentile Ranges
≤ 3rd Percentile
> 3rd but ≤ 10th percentile
> 10th Percentile
There are 9 possible combinations of A-B-C scores

38. Each 2 letter combination is assigned a 4 digit diagnostic rank of
4 – Severe
3 – Moderate
2 – Mild
1 – None

39. Ranking the Facial Phenotype
Photographs are taken in a relaxed facial expression: Full Face, Lateral and ¾ Face
Direct or Computer measurement is done on specific areas:
Palpebral Fissure Length
Upper Lip Thinness/Circularity
Computer measurements are guided by a comparison of a specific pixilated measurement

40. Philtrum Smoothness- Measured by comparison of this specific anatomical area to standardized pictures designed to have racially specific characteristics
Each measurement based on standard deviations of “normal” baseline measurements are assigned an A-B-C score for Palpebral Fissure Length, Philtrum, and Upper Lip Circularity

41. Facial Characteristics

42. Facial characteristics in children and adults

43. Each of the possible combination 27 A-B-C scores are assigned a Rank of 1-4 designating the Level of Expression of FAS Features
4 = Severe expression
3 = Moderate Expression
2 = Mild Expression
1 = No Expression

44. Ranking CNS
Rank 4 – Definite - Structural and/or Neurological Abnormalities
Rank 3 – Probable – Significant dysfunction present
Rank 2 – Possible – Mild to Moderate Delay or Dysfunction
Rank 1 – Unlikely - no current evidence of delay or dysfunction likely to reflect CNS damage.

45. Ranking Alcohol Exposure
Rank 4- Confirmed exposure to high levels of ETOH
Rank 3- Confirmed exposure, but level is less than 4 or level is unknown
Rank 2- Unknown exposure- neither confirmed absent or confirmed present
Rank 1- Confirmed absence of exposure from conception to birth

46. Ranking Other Pre and Post Natal Exposures and Events
Definitions
Rank 4- High Risk
Rank 3- Some Risk
Rank 2- Unknown Risk
Rank 1- No Known Risk

47. References
Sterling K. Clarren, MD and Susan J. Astley, Ph.D., Diagnostic Guide for Fetal Alcohol Spectrum Disorders and Related Conditions, 1997
Astley, Susan J, PhD., Diagnostic Guide for Fetal Alcohol Syndrome Disorders: The 4-Digit Diagnostic Code; Third Edition, University of Washington, 2004
Schoellhorn, J. Decline in the birth prevalence of fetal alcohol syndrome in Alaska. _03.pdf

48. National Organization on Fetal Alcohol Syndrome. http://www.nofas.org
 Centers for Disease Control and Prevention, National Center on Birth Defects and Developmental Disabilities, Fetal Alcohol Syndrome Prevention Team.
SAMHSA FASD Center for Excellence.

49. The Alaska Mental Health Trust Authority,
FAS Diagnostic and Prevention Network,
ls/fasd-fas.htm