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

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

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

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

Mental Health Issues 94% in secondary disabilities study had mental health issues Affects children, adolescents and adults FASD might not be considered or recognized – it’s 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

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)

Many People Aren’t Diagnosed Most people who are affected by FASD don’t know it –They may have grown up thinking they were different –They may be diagnosed with something else

Likely Misdiagnosis for Individuals with FASD ADHD Oppositional Defiant Disorder Conduct Disorder Intermittent Explosive Disorder Bipolar Psychotic Disorders Antisocial Personality Disorder Borderline Personality Disorder

Disrupted School Experience 43% of school aged FASD affected individuals Suspension Expulsion Drop-out

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

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

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

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

Alcohol and Drug Problems 26% age 12-20; 48% ages 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

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

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

The importance of recognizing co-occurring FASD The cognitive impairments in FASD can interfere with the ability 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 receptive language skills Difficulty with treatment based on processing information outside of session

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 their lifetime 79% reported having a birth parent with an alcohol problem

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

Streissguth et.al. (1996) 83% are unable to live independently (Regardless of IQ) Why?

Sample of adults age 21+ were unable to: –Manage money82% –Make daily living decisions78% –Obtain social services70% –Get medical care68% –Handle interpersonal relationships57% –Grocery shop52% –Cook meals49% –Structure leisure activities48% –Stay out of trouble48% –Maintain hygiene37% –Use public transportation24% FASD and Activities of Daily Living Streissguth et al. Longitudinal Study (1996)

The 7 S’s of Supportive Housing SELECTION STRUCTURE SUPPORT STABILITY SAFETY SECURITY SUPERVISION

“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

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

Appropriate Supports for Individuals with FASD Recognize and modify expectations Identify strengths, skills and interests Establish routines Build transitions into the routine

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

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

Strategies that Work Concrete instructions Consistent messages Repetition Routine Simple tasks, explanations Supervision Decreased stimulation

CARES Model Cues Attitude Repetition Expectations Support ( refer to we CARES manual )

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

Resources Streissguth, A., Fred L. Bookstein, Helen M. Barr, Paul Sampson, Kieran O’Malley, Julia Kogan Young “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, 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.

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

Thank you!