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FASD and Secondary Effects:Longitudinal 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 bea 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 livingindependently
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Mental Health Issues
94% in secondary d isabi l it ies stu dy hadmental health iss ues
Affects children, adolescents and adults
FASD might not be considered or recognizedits not an official mental health diagnosis -often does not receive attention by mental healthworkers
Even when FASD is recognized, anotherdiagnosis is often used in order to getreimbursement for treatment or services
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Possibility of Misdiagnosis
Individuals may have undiagnosed ormisdiagnosed mental health disorders
Individuals may be diagnosed with a mental
health disorder without closely examining thetotal picture; FASD can look like many othermental health diagnoses
Adults may have many other disorders that comefrom 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 schoo l aged FASD affected ind iv iduals
Suspension
Expulsion
Drop-out
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Potential Victimization
72% of ind iv iduals w ith FASD had been v ict ims
of phys ical , sexual and /or emo tional 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 ado lescents; 58% of adul ts in
secondary disabi l it ies study had inc reased
invo lvement w i th 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
Repo rted w ith 45% aged 12 and o ver
Often due to poor judgment, lack of impulse
control
Supervise with animals and younger children
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Unprepared Life Events
Lack of fores ight , poor impu lse con tro l and
poor judgment o f ten lead to unp repared l i fe
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 diagnosedwith 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
disabi l it ies study
Biological vulnerability to substance use
Use of substances to self-medicate
Difficulties with issues of control
Repeated failures in traditional addictionstreatment
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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 andan 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/orsubstance use disorder is significant
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The importance of recognizing
co-occurring FASD
The cognitive impairments in FASD can interfere with theability to be successful with typical treatment approaches
> lateral thinking
> difficulty with multiple directions
> difficulty following through with multiple treatment plans
Difficulty with treatment based on verbal receptivelanguage skills
Difficulty with treatment based on processing informationoutside 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
>77%: PTSD
>59%: Major depressive disorder
>34%: Generalized anxiety
>22%: manic episode/bipolar disorder
>7%: schizophrenia
95% had been physically or sexually abused during theirlifetime
79% reported having a birth parent with an alcoholproblem
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Dependent Living
83% of those 21 and over in secondary
disabi l i t ies stu dy were unable to l ive
independent ly
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 orhousing
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Streissguth et.al. (1996)
83% are unable to live
independently
(Regardless of IQ)
Why?
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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%
FASD and Activities of Daily LivingStreissguth et al. Longitudinal Study (1996)
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The 7 Ss of Supportive Housing
SELECTION
STRUCTURE
SUPPORTSTABILITY
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 Evict ion Pol icy
* Specifically for non-parenting adults with FASD
L i Ri k f S d
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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 withFASD and work with that individual to help themhave 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
A ttitude
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, PaulSampson, Kieran OMalley, Julia Kogan Young. 2004.Risk Factors for Adverse Life Outcomes in Fetal AlcoholSyndrome and Fetal Alcohol Effects. Developmentaland Behavioral Pediatrics Vol. 25, No. 4.
Streissguth, Ann. Fetal Alcohol Syndrome: A guide forfamilies and communities. Baltimore, MD: Paul H.Brooks, 1997.
Streissguth, A., H. Barr, J. Kogan, F. Bookstein.Understanding the occurrence of secondary disabilitiesin 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 byFetal Alcohol Syndrome: A Guide for DailyLiving, The Adoption Council of Canada, 1994.
Ann Streissguth, Jonathan Kanter. TheChallenge of Fetal Alcohol Syndrome:Overcoming Secondary Disabilities, University ofWashington Press, 1997.
Bonnie Buxton. Damaged Angels: A motherdiscovers the terrible cost of alcohol inpregnancy, Knopf, 2004.
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Thank you!