FASD and Secondary Effects: Longitudinal Study Conducted by Dr Anne Streissguth, Washington, D.C.

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FASD and Secondary EffectsLongitudinal Study
Conducted by Dr Anne Streissguth, Washington, D.C.
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Secondary Effects

• Result from negative consequences of primary
  disabilities and can often change
• For example, while learning disabilities might be
  a primary disability, depression may be the
  effect of repeated failures because of those
  disabilities

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Research Study

• The following secondary effects were ascertained
  from life history interviews of 415 FASD affected
  individuals using 450 questions
• Dr Anne Streissguth, et al, University of
  Washington

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Secondary Disabilities

• Mental health problems
• Disrupted school experiences
• Easily victimized
• Trouble with the law
• Inappropriate sexual behaviour
• Alcohol and drug problems
• Problems with employment and living independently

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Mental Health Issues

• 94 in secondary disabilities study had mental
  health issues
• Affects children, adolescents and adults
• FASD might not be considered or recognized its
  not an official mental health diagnosis - often
  does not receive attention by mental health
  workers
• Even when FASD is recognized, another diagnosis
  is often used in order to get reimbursement for
  treatment or services

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Possibility of Misdiagnosis

• Individuals may have undiagnosed or misdiagnosed
  mental health disorders
• Individuals may be diagnosed with a mental health
  disorder without closely examining the total
  picture FASD can look like many other mental
  health diagnoses
• Adults may have many other disorders that come
  from living with FASD without support
• (Dubovsky, 2002)

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Many People Arent Diagnosed

• Most people who are affected by FASD dont know
  it
• They may have grown up thinking they were
  different
• They may be diagnosed with something else

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Likely Misdiagnosis for Individuals with FASD

• ADHD
• Oppositional Defiant Disorder
• Conduct Disorder
• Intermittent Explosive Disorder
• Bipolar
• Psychotic Disorders
• Antisocial Personality Disorder
• Borderline Personality Disorder

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Disrupted School Experience

• 43 of school aged FASD affected individuals
• Suspension
• Expulsion
• Drop-out

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Potential Victimization

• 72 of individuals with FASD had been victims of
  physical, sexual and/or emotional abuse
• Difficulty with sound judgment and
  decision-making, along with the desire to please
  others, leaves them vulnerable to exploitation,
  manipulation and abuse

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Trouble with the Law

• 61 of adolescents 58 of adults in secondary
  disabilities study had increased involvement with
  the law
• Poor concept of cause and effect
• Inability to predict consequences
• Inability to change actions in different
  situations

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Inappropriate Sexual Behaviour

• Reported with 45 aged 12 and over
• Often due to poor judgment, lack of impulse
  control
• Supervise with animals and younger children

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Unprepared Life Events

• Lack of foresight, poor impulse control and
  poor judgment often lead to unprepared life
  events
• In a sample of 30 females with FASD who had given
  birth, 57 no longer were caring for their
  child(ren), 40 reported drinking during
  pregnancy, 17 of the children were diagnosed
  with FASD, and another 13 were suspected of
  having FASD

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Alcohol and Drug Problems

• 26 age 12-20 48 ages 21-51 in secondary
  disabilities study
• Biological vulnerability to substance use
• Use of substances to self-medicate
• Difficulties with issues of control
• Repeated failures in traditional addictions
  treatment

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The Argument for Co-occurrence

• People with mental illness frequently use
  substances, often to self-medicate
• Many mental illnesses have a genetic component
  leading to vulnerabilities in offspring
• Substance use disorders may have a genetic
  component leading to vulnerabilities in offspring
• Therefore, the risk of a woman with a mental
  illness and an alcohol use disorder giving birth
  to a child with FASD and vulnerabilities for
  mental illness and substance use is significant

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The Argument for Co-occurrence

• We know that stressors can exacerbate underlying
  disorders
• We are aware that individuals with FASD
  experience multiple stressors in their lives
• Therefore, the likelihood that a person with FASD
  and these underlying vulnerabilities would have a
  co-occurring mental illness and/or substance use
  disorder is significant

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The importance of recognizing co-occurring FASD

• The cognitive impairments in FASD can interfere
  with the ability to be successful with typical
  treatment approaches
• gt lateral thinking
• gt difficulty with multiple directions
• gt difficulty following through with multiple
  treatment plans
• Difficulty with treatment based on verbal
  receptive language skills
• Difficulty with treatment based on processing
  information outside of session

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Profile of 80 birth mothers of children with FAS

• 100 had alcohol use histories
• 96 had one to ten mental health disorders
• gt77 PTSD
• gt59 Major depressive disorder
• gt34 Generalized anxiety
• gt22 manic episode/bipolar disorder
• gt7 schizophrenia
• 95 had been physically or sexually abused during
  their lifetime
• 79 reported having a birth parent with an
  alcohol problem

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Dependent Living

• 83 of those 21 and over in secondary
  disabilities study were unable to live
  independently
• Managing and understanding the value of money was
  the most frequent difficulty tend to spend what
  they have
• Repeatedly need help with money for food or
  housing

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83 are unable to live independently (Regardless
of IQ) Why?
Streissguth et.al. (1996)
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FASD and Activities of Daily LivingStreissguth
et al. Longitudinal Study (1996)

• Sample of adults age 21 were unable to
• Manage money 82
• Make daily living decisions 78
• Obtain social services 70
• Get medical care 68
• Handle interpersonal relationships 57
• Grocery shop 52
• Cook meals 49
• Structure leisure activities 48
• Stay out of trouble 48
• Maintain hygiene 37
• Use public transportation 24

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The 7 Ss of Supportive Housing

• SELECTION
• STRUCTURE
• SUPPORT
• STABILITY
• SAFETY
• SECURITY
• SUPERVISION

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Supportive Housing for FASD(Tina Antrobus)

• Long Term Safe Permanent Place to Call Home
• Awake Staff 24/7
• Integrated Individualized Case Management
• Meals Provided
• Programs (Employment, Education, Leisure)
• Comprehensive Supported Activities of Daily
  Living
• Peer Support (Circle of Friends, mentor)
• Family Involvement / Support
• Addictions Services
• Health Care (GP, PHN, meds)
• Mental Health
• Transportation
• Legal Resources
• Staff Support

No Eviction Policy
Specifically for non-parenting adults with FASD
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Lowering Risk of Secondary Disabilities
(Streissguth et al 1996)

• Living in a stable, nurturing home
• Staying in the same household for at least three
  years
• Diagnosis by six years of age
• Not being a victim of violence
• Receiving services for disability

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Appropriate Supports for Individuals with FASD

• Recognize and modify expectations
• Identify strengths, skills and interests
• Establish routines
• Build transitions into the routine

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Appropriate Supports for Individuals with FASD

• Provide simple instructions or cues
• Help to develop skills for expressing feelings
• Support social skills development
• Involve as many senses as possible
• Re-evaluate expectations and goals

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Attitudes and Expectations

• Recognize FASD as a lifelong disability
• Form realistic expectations of the individual
  with FASD and work with that individual to help
  them have an improved quality of life

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Strategies that Work

• Concrete instructions
• Consistent messages
• Repetition
• Routine
• Simple tasks, explanations
• Supervision
• Decreased stimulation

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CARES Model

• Cues
• Attitude
• Repetition
• Expectations
• Support
• (refer to www.annewright.ca we CARES manual)

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Paradigm Shift

• Need to change expectations that all behaviour
  can be changed
• FASD needs to be seen as an invisible disability
• Dependence is a factor of FASD
• People with FASD need things to be repeated many
  times and to be reminded often

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Resources

• Streissguth, A., Fred L. Bookstein, Helen M.
  Barr, Paul Sampson, Kieran OMalley, Julia Kogan
  Young. 2004. Risk Factors for Adverse Life
  Outcomes in Fetal Alcohol Syndrome and Fetal
  Alcohol Effects. Developmental and Behavioral
  Pediatrics Vol. 25, No. 4.
• Streissguth, Ann. Fetal Alcohol Syndrome A guide
  for families and communities. Baltimore, MD Paul
  H. Brooks, 1997.
• Streissguth, A., H. Barr, J. Kogan, F. Bookstein.
  Understanding the occurrence of secondary
  disabilities in clients with Fetal Alcohol
  Syndrome (FAS) and Fetal Alcohol Effects (FAE).
  Seattle University of Washington,
  1996.Streissguth, A.

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Books

• Sara Graefe (ed.) Parenting Children Affected by
  Fetal Alcohol Syndrome A Guide for Daily Living,
  The Adoption Council of Canada, 1994.
• Ann Streissguth, Jonathan Kanter. The Challenge
  of Fetal Alcohol Syndrome Overcoming Secondary
  Disabilities, University of Washington Press,
  1997.
• Bonnie Buxton. Damaged Angels A mother discovers
  the terrible cost of alcohol in pregnancy, Knopf,
  2004.

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Thank you!