Fetal Alcohol Spectrum Disorder - Diagnosis, Dilemmas and Hope

Christine R. Wasson, Psychologist CDC &

Dawa Z Samdup, Developmental Paediatrician CDC/Queens University

Kingston

What Is Fetal Alcohol Syndrome?

FAS refers to a group of features found in children born to women who drink in pregnancy

These features included: • facial & other physical anomalies • pre- & post-natal growth deficiency • a variety of central nervous system

(CNS)/brain abnormalities

Fetal Alcohol Spectrum Disorders (FASD)

Umbrella term describing the range

of effects that can occur in an individual whose mother drank alcohol during pregnancy (FAS, Partial FAS, Alcohol Related Neurodevelopment Disorder, Alcohol Related Birth Defects

May include physical, mental, behavioral, and/orlearning disabilities with possible lifelongimplications

“Invisible” disability

+

Fetal Alcohol Spectrum Disorders (FASD) Cont’d

Diagnostic and Statistical Manual of Mental Disorders – Fifth Edition (DSM-5)

Neurodevelopmental disorder associated with prenatal alcohol exposure - 315.8 (F88)

Neurodevelopmental disorder associated with prenatal exposure is characterized by a range of developmental disabilities following exposure to alcohol in utero

No set diagnostic criteria, diagnostic features, differential diagnosis or comorbidity are not discussed

How Does Alcohol Cause FAS/FASD?

Exposure to alcohol in pregnancy decreased ‘sprouting’ of brain cells, which has a profound impact on subsequent cognitive development

Interference with the 1st growth spurt brain malformations, microcephaly, or cells in particular areas, e.g. corpus callosum or cerebellum

A 2nd growth spurt occurs at ~7months. Exposure to toxins then behavioral/cognitive even with normal size brain

What Protects Some Kids & Not Others?

Maternal drinking pattern Differences in maternal metabolism Differences in Genetic susceptibility Timing of alcohol consumption

during pregnancy Variation in vulnerability of different

brain regions

How Common is FASD?

80% of women locally report drinking some alcohol

Between 50%-75% of all pregnancies are unplanned and social drinking prior to knowledge of pregnancy is common (Riley, 2003)

Estimate of FAS vary from 0.5 to 3 per 1000 live birth in most populations, with higher rates in some communities (Stratton et al., 1996)

Estimates of alcohol-affected births are five to ten times as many

Why Diagnose?

Supports a shift in understanding and reframing the meaning of presenting behaviours from “won’t” to “can’t”

New understanding leads to new strategies at home and other environments

Funding in school and daycare Opening doors for family services Better medical management Prevention of secondary disabilities (diagnosis before 6

years is protective factor) Prevention of future alcohol affected children

Secondary Disabilities

Challenges To Diagnosis!

Lack of history about biological parents Lack of diagnostic facilities Use of different diagnostic criteria Not all physician know how to make the

diagnosis No school programs/solutions for diagnosed

children No preparation/program in the correction

system No facilities/plans for adults with FASD Limited investment for FASD by

government

Diagnostic Criteria For FASD

Prenatal exposure to Alcohol FAS Facial Features Growth deficiency CNS damage (brain dysfunction)

Confirmation of Prenatal Exposure to Alcohol

History – self report or by others close to biological mother

Maternal biomarkers (e.g., alcohol in blood/breath test; Liver enzymes)

Neonatal Biomarkers (e.g., measuring Fatty Acid Ethyl Esters/FAEEs in baby’s meconium)

Intrauterine-Postnatal Growth Decelerating weight over time not

due to nutrition or other know pathology

Disproportional low weight to height Always consider parental weight,

height, and head circumference

Growth Deficiency

5

FAS Facial Phenotype

CNS Damage/Dysfunction – Brain Changes

CNS Damage/Dysfunction – Brain Changes

Reasoning (IQ)

Attention

Learning

Memory

Adaptation

Motor

Executive Function

Regulation of State

Speech/Language

Typical Difficulties ForPersons With an FASD

Information Processing:

Do not complete tasks or chores and may appear to be oppositional

Have trouble determining what to do in a given situation

Do not ask questions because they want to fit in

Have trouble with changes in tasks and routine

Typical Difficulties For Persons With an FASD - Executive Function and Decision-Making

Repeatedly break the rules

Give in to peers pressure

Tend not to learn from mistakes or natural consequences

Frequently do not respond to reward systems (points, levels, stickers, etc.)

Have difficulty entertaining themselves

Naïve, gullible (e.g., may walk off with a stranger)

Struggle with abstract concepts (e.g., time, space, money, etc.)

I’m late! I’m late!

Typical Difficulties For Persons With an FASD

Self-Esteem and Personal Issues: Function unevenly in school, work, and

development – Often feel “stupid” or like a failure

Are seen as lazy, uncooperative, and unmotivated –Have often been told they’re not trying hard enough

May have hygiene problems Are aware that they’re “different” from others Often grow up living in multiple homes and

experience multiple losses

Typical Difficulties For Persons With an FASD

Sensory: May be overly sensitive to bright lights, certain clothing, tastes and textures in food, loud sounds, etc.

Physical: Have problems with balance and motor coordination (may seem “clumsy”).

Typical Strengths of PersonsWith an FASD

Friendly and cheerful

Likable

Desire to be liked

Helpful

Verbal

Determined

Have points of insight

Hard working

Every day is a new day!

Clinical process for FASD Diagnosis at the Child

Development Centre Hotel Dieu Hospital

About the Child Development Centre (CDC)

Located at Hotel Dieu Hospital One of 21 Children's Treatment Centres in the province. It serves children and youth with multiple disabilities Interdisciplinary teams that include the Medical, Social Work,

Physiotherapy, Occupational therapy, Psychology, and Speech and Language disciplines.

Work together with parents, teachers, community agencies to support the clients and their families to achieve an optimal level of independence in their home and community.

More than 10,000 patient visits are recorded by the CDC each year.

The CDC is funded through the Ontario Ministry of Children and Youth.

www.KingstonCDC.ca

CDC offers FASD diagnosis It is not a FASD clinic - Developmental

paediatrician and psychologist Referrals have increased from 3-4 to 8-

10 in a year In 2013, 6 children were identified with

FASD: 1 with FAS, 1 with partial FAS and 4 with ARND.

FASD Diagnosis vs. FASD Clinic

Referral Process

A physician referral querying FASD; some knowledge of prenatal alcohol exposure

Clients typically referred with a query of FASD range in age from 5 – 12 years of age

All intakes for query FASD are reviewed by the Psychologist

Steps

1) Parents/guardians may be contacted to ascertain what the presenting problems are

2) The following information is collected: growth charts, Genetics testing, history about birth parents, details concerning maternal use of alcohol, and copies of all assessment reports (OT, PT, SLP)

3) Typically children see the psychologist first for a comprehensive psychological assessment

4) Children and parent/guardians are then booked in to see the Developmental Paediatrician for a comprehensive medical evaluation

5) Typically the psychologist provides feedback to parents/guardians at the medical appointment

Gets background history from parent/guardian

Teacher interviews Review report cards (if available) Standardized measures &

parent/teacher questionnaires are used to assess cognitive, adaptive, academic, sensory and behavioural functioning

Psychological Assessment

Medical Evaluation

Following the psychological assessment an appointment is scheduled for the child and parents/gurdians to see the developmental paeditrician

A Developmental History is completed Comorbid disorders are checked for (e.g.,

AHDH, Anxiety, Sleep Disorders) Physical Exam – FAS Facial Phenotype

assessed

Diagnosis:

The developmental pediatrician and psychologist review all available data

The Fetal alcohol spectrum disorder: Canadian guidelines for diagnosis are used

The developmental pediatrician gives the diagnosis

4 Digit Diagnostic Code:

Rank Growth Face CNS Alcohol Exposure

4

3

2

1

Post Assessment Practices

The developmental paediatrician and psychologist provide feedback to parents/guardian together

Psychologist often attends school conferences to share the finding of the assessment

Developmental Pediatrician may continue to monitor if medication is prescribed

Referral to behavioural programs (e.g., Pathways for Children and Youth or Behavioural Services at Ongwanada)

If significant sleep issues are present will refer young children to CHEO and if older to Kingston General Hospital for a sleep study

Put families in touch with Queens University concerning different research initiatives

Refer families to FASD Kingston Learning & Sharing Group

What’s Needed?

More resources for other services (e.g., SLP, OT and social work)

Liaison person to translate test findings and educate school staff and to assist the family and school in working towards the recommendations

Not enough psychologists in public sector to do testing

More coordination of services among community partners

Hope

Early identification and intervetnion reduces the risk of secondary disabilities considerably

Community partners assisting in psychological assessments

Collaboration of stakeholders, reseachers and community partners at the local, provincal and national level. Some of these include:

• NeuroDevNet • Queen’s University • Canada Fetal Alcohol Spectrum Disorder

Research Network (CanFASD)• FASD Ontario Network of Expertise (FASD ONE)• FASD Kingston Action Network