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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


Recognize and modify expectations

Identify strengths, skills and interests

Establish routines

Build transitions into the routine


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Appropriate Supports for


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)
http://www.annewright.ca/http://www.annewright.ca/


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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!

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