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

Introduction: Secondary Disabilities Often in the adolescent and adult with FASD secondary disabilities emerge Often in the adolescent and adult with FASD secondary disabilities emerge Secondary disabilities are believed to result from complications of undiagnosed or untreated primary disabilities Secondary disabilities are believed to result from complications of undiagnosed or untreated primary disabilities

Introduction: Secondary Disabilities Mental health problems Mental health problems Disrupted school experiences Disrupted school experiences Easily victimized Easily victimized Trouble with the law Trouble with the law Confinement Confinement

Introduction: Secondary Disabilities (cont.) Inappropriate sexual behaviour Inappropriate sexual behaviour Alcohol and drug problems Alcohol and drug problems Needing dependent living situations Needing dependent living situations Problems with employment Problems with employment

Secondary vs. Primary Disabilities Are they the same or are Are they the same or are they different?

Executive functions of the prefrontal cortex  working memory  planning  time perception  internal ordering  self- monitoring  regulation of emotion  motivation  inhibition

Secondary vs. Primary Disabilities Impulsive and uninhibited Impulsive and uninhibited Passive and withdrawn one minute, switching to volatile temper tantrums the next Passive and withdrawn one minute, switching to volatile temper tantrums the next Unpredictable; may need 24 hour supervision Unpredictable; may need 24 hour supervision Depression, Extreme Anxiety Depression, Extreme Anxiety

Secondary vs. Primary Disabilities Hyperactive in non-goal directed activity Hyperactive in non-goal directed activity Unable to stay focused on task: to follow rules, finish household chores, school assignments or keep commitments Unable to stay focused on task: to follow rules, finish household chores, school assignments or keep commitments Genuine innocence and detached attitude Genuine innocence and detached attitude

Secondary vs. Primary Disabilities Impulsive – sexually inappropriate, stealing Impulsive – sexually inappropriate, stealing “Short-sighted” “Short-sighted” May expect immediate gratification May expect immediate gratification Engaging and charismatic yet creative at re- framing reality. Engaging and charismatic yet creative at re- framing reality.

Impact of FASD

Experience of Living with FASD 10-year-old stated: “Learning is hard. The teachers don’t explain things (in a manner that allows her to understand).”

Experience of Living with FASD 18-year-old stated: “They (teachers, employers) expected me to do things I couldn’t. I have a hard time doing some things. Others (kids his age) do things easier, get through work ….”

Experience of Living with FASD 21-year-old stated: “It (FAS) really does effect quality of life. It affects, school working, friendships…. How does it affect me? Differently. I do things differently…..My brain is rewired differently (than others).”

Experience of Living with FASD 8-year-old stated: “(It’s) hard, hard to keep out of trouble, and I am not that smart. Everybody makes fun of me.”

Hope for Positive Outcomes 21 year old stated: “The disability happened, it’s a disadvantage. It is not a disability. I don’t like to use it as an excuse (for not participating in life)”.

Hope for Positive Outcomes 19 year old stated: “I don’t have the best brain. … But it still works”.

Protective Factors Being raised in a nurturing stable environment Diagnosis before age 6 Having a diagnosis of FAS rather than ARND (Streissguth et al., 2004)

Interventions: Diagnosis

Why Diagnose? New understanding leads to new strategies at home and other environments New understanding leads to new strategies at home and other environments Opens doors for services Opens doors for services Better medical management. Better medical management.

Interventions: Psychosocial

Interventions: Psycho-social Mental Health Programs – behavioural, social skill development Mental Health Programs – behavioural, social skill development Counselling: family doctors, social workers, nurses, adolescent paediatricians, psychiatrists, psychologists Counselling: family doctors, social workers, nurses, adolescent paediatricians, psychiatrists, psychologists Support Groups Support Groups

Interventions: Psychosocial Activities that foster confidence and social development ? Medication

Interventions: Learning

Interventions: Facilitate Learning Psychological Assessment Psychological Assessment Modification of School/Job Training Programs: Modification of School/Job Training Programs: Small Size of 8 to 10 Small Size of 8 to 10 Individual Educational Plan Individual Educational Plan Resource Teacher Resource Teacher Job Coach Job Coach

Six Strategies for Teaching Individuals with FASD 1.Structure and routine is critical 2. Less talk and more multi-sensory learning opportunities 3.Be concrete and don’t assume anything. Teach and re-teach

Six Strategies for Teaching Individuals with FASD 4.Facilitate language. Use specialists to help with language development. 5.Gross motor programming is important These students need to move. 6.Reduce stimulation, use visual cues.

Interventions: Facilitate Job Success Work environment that is accepting of areas of weakness not just areas of strength Work environment that is accepting of areas of weakness not just areas of strength Structure Structure Supervision Supervision Modified Work Hours Modified Work Hours

Interventions: Facilitate Independence Identify housing that matches the individuals needs Identify housing that matches the individuals needs Economic support and protection Economic support and protection The “External Brain” The “External Brain” A community that cares A community that cares

Interventions: Strategies for Success

Strategies for Success Observe patterns of behaviours Observe patterns of behaviours Identify strengths, skills and interests Identify strengths, skills and interests Reframe the interpretation of behaviours Reframe the interpretation of behaviours Provide structure rather than control Provide structure rather than control Establish routines and consistency Establish routines and consistency

Strategies For Success Build transitions into every routine Build transitions into every routine Model behaviours Model behaviours Provide simple instructions or cues Provide simple instructions or cues Identify behaviours which indicate the accumulation of frustrations Identify behaviours which indicate the accumulation of frustrations Help develop skills for expressing feelings Help develop skills for expressing feelings

Strategies for Success Provide specific support for social skill development Provide specific support for social skill development Understand the various forms of communications Understand the various forms of communications Include as many sensory modalities as possible to facilitate integration of information and experience Include as many sensory modalities as possible to facilitate integration of information and experience

Strategies for Success Consider information processing abilities Consider information processing abilities Reevaluate expectations and goals for the individual: Clarify whose needs are being met by the goals Reevaluate expectations and goals for the individual: Clarify whose needs are being met by the goals Clarify goals and values for education/job training and independence Clarify goals and values for education/job training and independence

Strategies for Success Advocate - Anticipate - Advocate - Anticipate - Co-ordinate – Accept Integration of culturally relevant values and traditions Integration of culturally relevant values and traditions Environment Environment