FETAL ALCOHOL SPECTRUM DISORDERS

PRESENTED BY BARB CLARK

FETAL ALCOHOL SPECTRUM DISORDERS- FASD

•  MOST PEOPLE HAVE HEARD OF FAS, FETAL ALCOHOL SYNDROME. IT BECAME A SPECTRUM DISORDER IN 1996.

•  FASDS ARE A SET OF PHYSICAL, BEHAVIORAL AND COGNITIVE DISORDERS AFFECTING PEOPLE WHO WERE PRENATALLY EXPOSED TO

ALCOHOL.

•  FASDS ARE PERMANENT DISABILITIES THAT RESULT IN LIFETIME BRAIN DAMAGE.

•  FASDS ARE 100% PREVENTABLE AND THE NUMBER ONE KNOWN CAUSE OF INTELLECTUAL DISABILITY.

THE FA

SD U

MBRELLA

FETAL ALCOHOL SPECTRUM

DISORDER IS AN UMBRELLA TERM.

¢  Fetal Alcohol Syndrome -FAS. (1973): 3 facial features, growth

deficits, meet the cognitive profile

¢  Alcohol Related Neurodevelopmental Disorder- ARND (1996)- new name for FAE (Fetal Alcohol Effect): No physical features but brain was impacted by the alcohol. Must have confirmation of alcohol exposure in utero and match the cognitive profile.

¢  Partial Fetal Alcohol Syndrome- pFAS (1996): Have some of the physical features but not all. Match the cognitive profile

¢  DSM 5 (2013): Can list any FASD as: “other specified neurodevelopmental disorder” [315.8] Then add the specifier: “neurodevelopmental disorder associated with prenatal alcohol exposure” (ND-PAE)

FETAL ALCOHOL SYNDROME FACIAL FEATURES

•  SMOOTH PHILTRUM

•  THIN UPPER LIP

•  SHORT PALPEBRAL FISSURES

ALCOHOL OR DRUGS: WHICH IS MORE DAMAGING TO A

DEVELOPING FETUS?

“OF ALL THE SUBSTANCES OF ABUSE (INCLUDING COCAINE, HEROIN, AND MARIJUANA), ALCOHOL

PRODUCES BY FAR THE MOST SERIOUS NEUROBEHAVIORAL EFFECTS IN THE FETUS.”

—IOM REPORT TO CONGRESS, 1996

FACTORS THAT IMPACT THE DEGREE OF BRAIN DAMAGE TO THE DEVELOPING

FETUS •  TIMING OF EXPOSURE

•  RESILIENCY OF FETUS

•  METABOLISM AND DIET OF THE MOTHER •  IF MOM’S IRON LEVEL IS LOW, MORE LIKELY FETUS IS DAMAGED

•  BLOOD ALCOHOL CONCENTRATION OF THE MOTHER

ONLY 10-20% OF PEOPLE ON THE

SPECTRUM HAVE THE FACIAL FEATURES

ONLY 10-20% OF PEOPLE ON THE SPECTRUM HAVE THE FACIAL FEATURES

ONLY 10-20% OF PEOPLE ON THE SPECTRUM HAVE THE FACIAL FEATURES

PREVALENCE

u 2014 RESEARCH ESTIMATES THAT 1 OUT OF 25 CHILDREN HAVE AN FASD, BUT MOSTLY GO UNDIAGNOSED OR ARE MISDIAGNOSED. (MAY, 2014). PREVIOUS RESEARCH FOUND 1 OUT OF 100 HAD AN FASD.

u 1 OUT OF 68 CHILDREN HAVE AN AUTISM DIAGNOSIS ACCORDING TO THE CDC. AUTISM AND FASD HAVE MANY SIMILARITIES.

*PHILIP A. MAY, ET AL, “PREVALENCE AND CHARACTERISTICS OF FETAL ALCOHOL SPECTRUM DISORDERS,” PEDIATRICS, VOLUME 134, NUMBER 5, NOVEMBER 2014.

Graphics and info put together by MOFAS

4TH-6TH GRADES

AROUND THE AGES OF 9-11, DIFFICULTIES IN ACADEMIC

PERFORMANCE AND BEHAVIOR IN THE SCHOOL SETTING BECOME

MORE APPARENT.

ITISIMPORTANTTOCONSIDERSCREENINGFORANFASDIFPARENTSAREEXPRESSINGCONCERNSOVERNEW

BEHAVIORALISSUESAND/ORACADEMICSTRUGGLES

PARTICULARLYAROUNDTHE4THTO6THGRADELEVEL.

RED FLAGS QUESTION TO CONSIDER

•  WAS THE CHILD IN FOSTER CARE OR IS HE/SHE ADOPTED? •  IT IS ESTIMATED THAT 80% OF CHILDREN IN FOSTER CARE WERE

PRENATALLY EXPOSED TO ALCOHOL AND HAVE AN FASD.

•  29-68% OF RUSSIAN ADOPTIONS ARE ESTIMATED TO SHOW SEVERE ALCOHOL-RELATED DAMAGE

•  IS THERE HISTORY OF CHEMICAL DEPENDENCY ISSUES FOR CHILD OR FOR THEIR PARENTS?

•  IS CHILD IS EASILY DISTRACTED, HYPERACTIVE, INATTENTIVE AND IMPULSIVE?

•  HAVE THEY BEEN INVOLVED WITH THE CRIMINAL JUSTICE SYSTEM?

•  DOES THE CHILD CONTINUE TO MAKE THE SAME MISTAKES?

•  DOES THE CHILD APPEAR TO NOT LEARN FROM CONSEQUENCES?

RED FLAGS

•  CAN THE CHILD REPEAT A RULE, BUT CANNOT FOLLOW IT? •  ARE THERE MULTIPLE DIAGNOSES LIKE BI-POLAR, ADHD, REACTIVE ATTACHMENT

DISORDER, AUTISM, CONDUCT DISORDER, ETC.?

•  DOES THE CHILD CONSISTENTLY DISPLAY EXTREME BEHAVIORS (AGGRESSION, EMOTIONAL INSTABILITY)?

•  ARE THERE SLEEPING AND/OR EATING ISSUES? •  DOES THE INDIVIDUAL HAVE AN AVERAGE IQ BUT FUNCTIONS AT A MUCH LOWER

CAPACITY?

•  ARE VIVID FANTASIES AND PERSEVERATION PROBLEMS PRESENT? •  DOES THE INDIVIDUAL SEEM UNAWARE OF WHAT THEY HAVE DONE OR WHY

THEY ARE IN TROUBLE?

DIAGNOSIS v CONFIRMATION OF ALCOHOL CONSUMPTION DURING PREGNANCY IS

NEEDED IN ORDER TO DIAGNOSIS EVERYTHING UNDER THE SPECTRUM EXCEPT FOR FAS (IF THEY HAVE THE FACIAL FEATURES, CONFIRMATION OF EXPOSURE IS NOT REQUIRED).

v FASD: FOCUS OF DIAGNOSIS v GROWTH DEFICITS v CENTRAL NERVOUS SYSTEM PROBLEMS v HISTORY OF PRENATAL ALCOHOL EXPOSURE v FACIAL ABNORMALITIES (FAS, PFAS ONLY)

WHY DIAGNOSIS?

•  DECREASES ANGER/FRUSTRATION

FOR ALL

•  HELPS TO KNOW THE NEGATIVE BEHAVIORS RESULT FROM A DISABILITY AND ARE NOT WILLFUL

•  HELPS THE INDIVIDUAL RECEIVE APPROPRIATE SERVICES EARLY

•  SET REALISTIC EXPECTATIONS •  DECREASES RISK OF SECONDARY

DISABILITIES (LAW/SCHOOL)

•  PROVIDES BETTER SELF AWARENESS AND ACCEPTANCE

•  COULD PREVENT NEXT PREGNANCY EXPOSURE

•  INCREASES UNDERSTANDING THAT FASD IS A LIFETIME DISABILITY BASED ON PERMANENT, IRREVERSIBLE BRAIN DAMAGE

•  THE INDIVIDUAL WILL NEED A LIFETIME OF EXTERNAL SUPPORTS

HOW TO APPROACH THE TOPIC WITH BIRTH FAMILIES

•  TRY TO TAKE THE BLAME OR SHAME OFF BY ASKING:

“IS THERE ANYWAY YOU MIGHT HAVE BEEN USING ALCOHOL BEFORE YOU KNEW YOU WERE PREGNANT?”

STRENGTHS

u HIGHLY VERBAL

u  ENERGETIC, HARD WORKING

u  CARING, KIND AND LOYAL

u  CURIOUS AND INVOLVED

u  FRIENDLY/ LIKEABLE

u  TALKATIVE

u  STRONG DESIRE TO BE LIKED

u DON’T HOLD A GRUDGE

u GOOD WITH YOUNGER CHILDREN

u NOT MALICIOUS

u  EVERY DAY IS A NEW DAY!

TYPICAL SYMPTOMS/CHALLENGES

•  POOR IMPULSE CONTROL •  CAN LEAD TO STEALING, RAGING,

SEXUAL IMPULSIVITY

•  SENSORY ISSUES

•  POOR JUDGMENT

•  LACK OF CONTROL OVER EMOTIONS

•  OBSESSIVE/COMPULSIVE

•  STUBBORNNESS/PERSEVERATION •  VERY SIMILAR TO CHILDREN WITH AUTISM

•  SLEEP DIFFICULTIES

•  DIFFICULTY LEARNING FROM CONSEQUENCES

•  DIFFICULTY WITH GENERALIZING •  CAN HAVE LARGE IMPACT ON MATH SKILLS

TYPICAL SYMPTOMS/CHALLENGES

•  MEMORY DEFICITS

•  DIFFICULTY WITH ABSTRACT CONCEPTS

•  INABILITY TO MANAGE MONEY

•  DIFFICULTY WITH TELLING TIME

•  PATTERN OF LYING

•  ANXIETY

•  POOR PROBLEM SOLVING SKILLS

•  FEARLESSNESS-HIGH RISK BEHAVIORS

•  ATTENTION DEFICITS & HYPERACTIVITY

•  STRUGGLE WITH DELAYED GRATIFICATION

FASD & DEVELOPMENTAL TIMELINE ACTUAL AGE OF INDIVIDUAL: 18

Skill Developmental age equivalent

Expressive Language =================================> 20 Comprehension =======> 6 Money, time concepts =======> 8 Emotional maturity ==> 6 Physical maturity ================================> 18 Reading ability ==============================> 16 Social skills ===========> 7 Living skills ===================> 11

WE RECOMMEND YOU TAKE THE AGE OF AN INDIVIDUAL WITH AN FASD, AND CUT THEIR AGE IN HALF. THIS IS THE AGE THEY ARE PROBABLY FUNCTIONING AT IN MOST AREAS OF LIFE.

ADAPTED FROM: RESEARCH FINDINGS OF STREISSGUTH, CLARREN ET AL, .DIANE MALBIN 1994

HOW CAN YOU HELP?

•  THE SINGLE MOST EFFECTIVE INTERVENTION IS TO HELP THE

FAMILY GET THE SUPPORT AND

EDUCATION THEY NEED TO

BETTER UNDERSTAND THEIR

CHILD’S DISABILITY

•  WE HAVE TO HELP THE PARENT AND ALL INVOLVED IN THE CHILD’S LIFE TO UNDERSTAND, IT IS NOT WILLFUL DISOBEDIENCE, BUT RATHER BRAIN DAMAGE.

HOW CAN JJ PROFESSIONALS HELP?

•  REFER FAMILY FOR DIAGNOSIS IF APPROPRIATE

•  ENCOURAGE FAMILY TO GET SERVICES THAT THEY MIGHT QUALIFY FOR;

•  MA, TEFRA, DD CASE

MGMT, PCA, CMH CASE MGMT., ETC.

•  UNDERSTAND THE BRAIN BASED ASPECT OF THE DISABILITY

•  HELP FAMILY TO GET CONNECTED TO SUPPORTS WHO UNDERSTAND FASD

•  UNDERSTAND THE SYMPTOMS!!!

FINGLEDOBE AND PRIBIN

LAST SERNY, FINGLEDOBE AND PRIBIN WERE IN THE NERD-LINK TREPPERING GLOOPY CAPLES AND CLEAMING BURLY GREPS.

SUDDENTLY A DITTY STREZZLE BOOFED INTO FINGLEDOBE’S TRESK.

PRIBIN GLAPED AND GLAPED.

“OH FINGLEDOBE!” HE CHIFED, “THAT DITTY STREZZLE IS TUNNING IN YOUR GREP!”

Fewer than 10% of individuals with an FASD

are able to achieve success in living and working

independently

**Start helping the parents/caregivers to plan for the young

adult years *Streissguth, A. Fetal Alcohol Syndrome: A Guide for Families and Communities. 1997. Baltimore, MD. Brookes.

•  EARLY INTERVENTION IS KEY, WHENEVER POSSIBLE

•  DO NOT GIVE MULTI STEP INSTRUCTIONS-KEEP IT SIMPLE

•  HELP PARENT/CAREGIVER FIND FASD COMPETENT PROFESSIONALS

•  TALK TO FAMILY ABOUT LEVEL OF SUPERVISION THAT IS NECESSARY

•  SCHOOL REFUSAL COMMON-UNDERSTAND WHAT’S BEHIND IT

REMEMBER…

v  FASD IS BRAIN DAMAGE!!

v  BE PATIENT AND GIVE GRACE!!

v  DON’T ASK WHY!!

STATISTICS/FACTS

•  IQ IS NOT AN INDICATOR OF ABILITY

•  94% OF PEOPLE WITH FASD WILL ALSO BE DIAGNOSED WITH ADHD

•  43% DISRUPTED SCHOOL EXPERIENCES

•  50% CONFINEMENT IN JAIL OR TREATMENT PROGRAMS

•  45% ENGAGED IN INAPPROPRIATE SEXUAL BEHAVIOR

•  94% HAVE MENTAL HEALTH ISSUES

•  60% AGE 12 AND OLDER HAD TROUBLE WITH THE LAW

•  72% INDIVIDUALS WITH FASD HAVE BEEN VICTIMS OF PHYSICAL, SEXUAL AND/OR EMOTIONAL ABUSE STREISSGUTH, A. FETAL ALCOHOL SYNDROME: A GUIDE FOR FAMILIES AND COMMUNITIES. 1997. BALTIMORE, MD. BROOKES.

WEBSITES

u MN ORGANIZATION ON FETAL ALCOHOL SYNDROME u  WWW.MOFAS.ORG

u NATIONAL ORGANIZATION ON FETAL ALCOHOL SYNDROME u  WWW.NOFAS.ORG

u SAMHSA FASD CENTER FOR EXCELLENCE u  FASDCENTER.SAMHSA.GOV

u CENTERS FOR DISEASE CONTROL AND PREVENTION FAS PREVENTION TEAM u  WWW.CDC.GOV/NCBDDD/FAS

BOOKS

Ø TRY DIFFERENTLY RATHER THAN HARDER, DIANE MALBIN

Ø DAMAGED ANGELS, BONNIE BUXTON

Ø THE BEST I CAN BE, LIZ KULP

Ø WHEN RAIN HURTS, MARY EVELYN GREENE

Ø FETAL ALCOHOL SYNDROME, ANN STREISSGUTH

Ø THE BRAIDED CORD, LIZ & JODEE KULP

FASD DIAGNOSTIC CLINICS

•  MOFAS (MN ORG ON FAS) •  651-917-2370

•  ROSENBERG CENTER •  651-636-4155

•  UNIVERSITY OF MINNESOTA •  612-365-6777

•  FOR CURRENT LIST OF DIAGNOSTIC CLINICS, GO TO THE MOFAS WEBSITE,

•  HTTP://WWW.MOFAS.ORG/SUPPORT-AND-RESOURCES/RESOURCE-DIRECTORY/

•  CLICK ON HEALTH CARE AND THEN FILTER USING FASD DIAGNOSTIC CLINICS

BARB CLARK FASD EDUCATOR & ADVOCATE BARBCLARKFASD@GMAIL.COM 612-636-4042