Secondary Disabilities and Fetal Alcohol Spectrum Disorder Dr. Brenda Stade, RN St. Michael’s Hospital, Toronto

Secondary Disabilities and Secondary Disabilities and Fetal Alcohol Spectrum Fetal Alcohol Spectrum

DisorderDisorder

Dr. Brenda Stade, RN Dr. Brenda Stade, RN St. Michael’s Hospital, Toronto.St. Michael’s Hospital, Toronto.

Introduction: Introduction: Secondary DisabilitiesSecondary Disabilities

Often in the adolescent and adult with Often in the adolescent and adult with FASD secondary disabilities emergeFASD secondary disabilities emerge

Secondary disabilities are believed to Secondary disabilities are believed to result from complications of result from complications of undiagnosed or untreated primary undiagnosed or untreated primary disabilitiesdisabilities

Introduction:Introduction:Secondary DisabilitiesSecondary Disabilities

Mental health problemsMental health problems Disrupted school experiencesDisrupted school experiences Easily victimizedEasily victimized Trouble with the lawTrouble with the law ConfinementConfinement

Introduction:Introduction:Secondary Disabilities Secondary Disabilities

(cont.)(cont.)

Inappropriate sexual behaviour Inappropriate sexual behaviour Alcohol and drug problemsAlcohol and drug problems Needing dependent living Needing dependent living

situationssituations Problems with employmentProblems with employment

Secondary vs. Primary Secondary vs. Primary DisabilitiesDisabilities

Are they the Are they the same or are same or are

they different?they different?

Executive functions ofExecutive functions ofthe prefrontal cortexthe prefrontal cortex

working working memory memory

planning planning time time perception perception

internal internal ordering ordering

self-self-monitoring monitoring

regulation regulation of emotion of emotion

motivationmotivation

inhibitioninhibition


Impulsive and uninhibitedImpulsive and uninhibited

Passive and withdrawn one minute, Passive and withdrawn one minute, switching to volatile temper tantrums the switching to volatile temper tantrums the nextnext

Unpredictable; may need 24 hour Unpredictable; may need 24 hour supervisionsupervision

Depression, Extreme AnxietyDepression, Extreme Anxiety


Hyperactive in non-goal directed activityHyperactive in non-goal directed activity

Unable to stay focused on task: to follow Unable to stay focused on task: to follow rules, finish household chores, school rules, finish household chores, school assignments or keep commitmentsassignments or keep commitments

Genuine innocence and detached Genuine innocence and detached attitudeattitude


Impulsive – sexually inappropriate, stealingImpulsive – sexually inappropriate, stealing

““Short-sighted” Short-sighted”

May expect immediate gratificationMay expect immediate gratification

Engaging and charismatic yet creative at Engaging and charismatic yet creative at re-framing reality.re-framing reality.

Impact of FASDImpact of FASD

Experience of Living with Experience of Living with

FASDFASD 10-year-old stated:10-year-old stated:

““Learning is hard. The teachers Learning is hard. The teachers don’t explain things (in a manner don’t explain things (in a manner that allows her to understand).”that allows her to understand).”



““They (teachers, employers) They (teachers, employers) expected me to do things I expected me to do things I couldn’t. I have a hard time doing couldn’t. I have a hard time doing some things. Others (kids his age) some things. Others (kids his age) do things easier, get through work do things easier, get through work ….” ….”



““It (FAS) really does effect quality It (FAS) really does effect quality of life. It affects, school working, of life. It affects, school working, friendships…. How does it affect friendships…. How does it affect me? Differently. I do things me? Differently. I do things differently…..My brain is rewired differently…..My brain is rewired differently (than others).”differently (than others).”


FASDFASD 8-year-old stated: 8-year-old stated:

““(It’s) hard, hard to keep out of (It’s) hard, hard to keep out of trouble, and I am not that smart. trouble, and I am not that smart. Everybody makes fun of me.”Everybody makes fun of me.”

Hope for Positive OutcomesHope for Positive Outcomes

21 year old stated: 21 year old stated:

““The disability happened, it’s a The disability happened, it’s a disadvantage. It is not a disadvantage. It is not a disability. I don’t like to use it disability. I don’t like to use it as an excuse (for not as an excuse (for not participating in life)”. participating in life)”.

Hope for Positive OutcomesHope for Positive Outcomes

19 year old stated: 19 year old stated:

““I don’t have the I don’t have the bestbest brain. … brain. … But it still works”. But it still works”.

Protective FactorsProtective Factors

Being raised in a nurturing stable environment

Diagnosis before age 6

Having a diagnosis of FAS rather than ARND

(Streissguth et al., 2004)(Streissguth et al., 2004)

Interventions:Interventions:DiagnosisDiagnosis

Why Diagnose?Why Diagnose?

New understanding leads to new New understanding leads to new strategies at home and other strategies at home and other environmentsenvironments

Opens doors for servicesOpens doors for services

Better medical management.Better medical management.

Interventions:Interventions:PsychosocialPsychosocial

Interventions: Interventions: Psycho-socialPsycho-social

Mental Health Programs – behavioural, Mental Health Programs – behavioural, social skill developmentsocial skill development

Counselling: family doctors, social Counselling: family doctors, social workers, nurses, adolescent workers, nurses, adolescent paediatricians, psychiatrists, paediatricians, psychiatrists, psychologistspsychologists

Support Groups Support Groups

Interventions: Interventions: PsychosocialPsychosocial

Activities that foster confidence and social development

? Medication

Interventions:Interventions:LearningLearning

Interventions: Interventions: Facilitate LearningFacilitate Learning

Psychological Assessment Psychological Assessment

Modification of School/Job Training Modification of School/Job Training Programs:Programs: Small Size of 8 to 10Small Size of 8 to 10 Individual Educational PlanIndividual Educational Plan Resource Teacher Resource Teacher Job CoachJob Coach

Six Strategies for Teaching Six Strategies for Teaching Individuals with FASDIndividuals with FASD

1.1. Structure and Structure and routine is criticalroutine is critical

2. 2. Less talk and Less talk and more multi-more multi-sensory learning sensory learning opportunitiesopportunities

3.3. Be concrete and Be concrete and don’t assume don’t assume anything. Teach anything. Teach and re-teachand re-teach

Six Strategies for Teaching Six Strategies for Teaching Individuals with FASDIndividuals with FASD

4.4. Facilitate language. Use specialists Facilitate language. Use specialists to help with language development.to help with language development.

5.5. Gross motor programming is Gross motor programming is important These students need to important These students need to move.move.

6.6. Reduce stimulation, use visual cues.Reduce stimulation, use visual cues.

Interventions: Interventions: Facilitate Job SuccessFacilitate Job Success

Work environment that is accepting of areas of Work environment that is accepting of areas of weakness not just areas of strengthweakness not just areas of strength

StructureStructure

SupervisionSupervision

Modified Work Hours Modified Work Hours

Interventions: Interventions: Facilitate IndependenceFacilitate Independence

Identify housing that matches the Identify housing that matches the individuals needs individuals needs

Economic support and protection Economic support and protection The “External Brain”The “External Brain”

A community that caresA community that cares

Interventions:Interventions:Strategies for SuccessStrategies for Success

Strategies for SuccessStrategies for Success

Observe patterns of behaviours Observe patterns of behaviours Identify strengths, skills and interestsIdentify strengths, skills and interests Reframe the interpretation of Reframe the interpretation of

behavioursbehaviours Provide structure rather than controlProvide structure rather than control Establish routines and consistencyEstablish routines and consistency

Strategies For SuccessStrategies For Success Build transitions into every routineBuild transitions into every routine Model behavioursModel behaviours Provide simple instructions or cuesProvide simple instructions or cues Identify behaviours which indicate the Identify behaviours which indicate the

accumulation of frustrationsaccumulation of frustrations Help develop skills for expressing feelingsHelp develop skills for expressing feelings

Strategies for SuccessStrategies for Success Provide specific support for social Provide specific support for social

skill developmentskill development Understand the various forms of Understand the various forms of

communicationscommunications Include as many sensory Include as many sensory

modalities as possible to modalities as possible to facilitate integration of facilitate integration of information and experienceinformation and experience


Consider information processing abilities Consider information processing abilities

Reevaluate expectations and goals for Reevaluate expectations and goals for the individual: Clarify whose needs are the individual: Clarify whose needs are being met by the goalsbeing met by the goals

Clarify goals and values for education/job Clarify goals and values for education/job training and independencetraining and independence


Advocate - Anticipate - Advocate - Anticipate - Co-ordinate – AcceptCo-ordinate – Accept

Integration of culturally relevant Integration of culturally relevant values and traditionsvalues and traditions

EnvironmentEnvironment

Documents

Secondary Disabilities and Fetal Alcohol Spectrum Disorder Dr. Brenda Stade, RN St. Michael’s Hospital, Toronto