Building a Circle of Support for Families Affected by Addictions and FASD: Behavioral Aspects

1. Building a Circle of Support for Families Affected by Addictions and FASD: Behavioral Aspects Women Across the Life Span: A National Conference on Women, Addiction and Recovery July 12, 2004

2. Dan DubovskyFASD Specialist SAMHSA FASD Center for Excellence 1700 Research Blvd Rockville MD 20850 301-294-5479 dan.dubovsky@ngc.com

3. FASD: What Do We Know • Leading known cause of preventable mental retardation • The majority of individuals with FASD do not have mental retardation • 100% preventable • FASD can occur in any community where women drink • Women do not set out to harm their unborn children • Not a new disorder

4. What Causes Fetal Alcohol Syndrome? • Caused solely by a mother’s drinking alcoholic beverages during pregnancy • Alcohol is a teratogen • A substance that might interfere with the normal development of a fetus “Of all the substances of abuse (including cocaine, heroin,and marijuana), alcohol produces by far the most serious neurobehavioral effects in the fetus.” —IOM Report to Congress, 1996.

5. FASD: Alcohol’s Effects on the Fetus • Prenatal alcohol exposure causes brain damage • Effects of FASD last a lifetime • People with FASD can grow, improve and function well in life • Especially with the proper supports

6. Risks of Not Recognizing and Appropriately Treating FASD • Inaccurate diagnosis • Mislabeling • Inappropriate treatment • Unemployment • Psychiatric hospitalization • Loss of family • Homelessness • Jail • Death • Suicide, accident, murder, untreated physical illness

7. Why Aren’t More Individuals With FASD Diagnosed? • No blood, urine, or other physical test • No one symptom is specific to a fetal alcohol spectrum disorder • Few venues to get a diagnosis • No consensus as to who should be diagnosing these disorders • Lack of consistency or consensus in the diagnostic process

8. Why Aren’t More Individuals With FASD Diagnosed? • Many who diagnose will not diagnose adults • Many who diagnose will not diagnose a person without the facial features of FAS • Some won’t diagnose without confirmed maternal alcohol use during pregnancy • Some diagnosticians say they do not want to “label” someone with a fetal alcohol spectrum disorder

9. Benefits of Identification and Diagnosis of FASD • The individual is recognized as having a disability • May decrease anger and frustration on the part of the individual, the family, providers, and the community • The individual may feel relieved that s/he is not just “lazy” or “a bad person” • We can focus on why the person is not succeeding in a program and how we can help them succeed • Address the need to define “success” for each individual

10. Benefits of Identification and Diagnosis of FASD • If we recognize FASD, we can improve treatment outcomes • Those at highest risk of giving birth to a child with a fetal alcohol spectrum disorder are women who have already given birth to a child with a fetal alcohol spectrum disorder • Therefore, an essential prevention approach is the recognition of, and successful treatment for, these women • Some of them may have a fetal alcohol spectrum disorder • FASD are 100% preventable

11. FASD and Systems of Care • Individuals with FASD are in all systems of care (mostly unrecognized) • Education • Child welfare • Mental health • Developmental disabilities • Vocational services • Juvenile and adult justice systems • Substance abuse services • Housing • Physical health

12. Typical Difficulties for Individuals With FASD • Can’t entertain themselves • No stranger anxiety • Share personal information indiscriminately • Followers • Don’t maintain good hygiene • Have difficulty with multiple directions, multiple tasks, and changing tasks • Repeatedly break the rules • Do not complete tasks/chores • Appear to be oppositional

13. Typical Difficulties for Individuals With FASD • Don’t learn from their mistakes • Often don’t benefit from natural consequences • Don’t seem to care about rewards or punishments • Frequently do not respond to point or level systems (basic elements of many treatment programs) • Literal thinking • Lack of abstract thinking • Historical and future time is an abstract concept • Difficulty with cause and effect • Can’t anticipate consequences of actions

14. Typical Difficulties for Individuals With FASD • Difficulty with time • Being where they should be on time • Problems managing money • Difficulty transferring learning to other situations • Difficulty determining what to do in a given situation • Verbal expressive language is often much better than verbal receptive language • Most education and treatment is based on verbal receptive language skills

15. Typical Difficulties for Individuals With FASD • Do not ask questions • Desire to fit in • Say they understand and know what they need to do when they don’t • Attempt to feel more in control • Attempt to be like everyone else • Don’t accurately pick up social cues • Misinterpret others’ words, actions or body movements

16. Typical Difficulties for Individuals With FASD • Difficulty in programs that require work and decisions “on one’s own” • Uneven in school, work, and development • Sometimes they “get it” and sometimes they don’t • They may know something one day but not the next • Spelling tests • Experience multiple losses • Seen as unmotivated, uncooperative, and non-compliant

17. Overall Difficulties in FASDDubovsky (2003) • Taking in information • Storing information • Being able to recall it when necessary • Being able to correctly decide how to use it in a specific situation

18. Strengths of Persons With FASDDubovsky (1999) • Friendly • Likeable • Desire to be liked • Helpful • Good with younger children • Determined • Points of insight • Not malicious

19. Strategies for Improving Outcomes for Individuals With FASD • Educate families and providers about FASD • Have a thorough diagnostic work-up • Ask about possible prenatal alcohol exposure at intake • Simplify the individual’s environment • Simplify routines • Simplify the person’s room • Be consistent in activities and times • Provide one direction or rule at a time • Review rules regularly

20. Strategies for Improving Outcomes for Individuals With FASD • Use a lot of repetition • Provide a lot of one-to-one physical presence • Do not isolate the person • Always check understanding • Do not ask “do you understand?” or “do you have any questions?” • Use short term consequences • Do not use natural consequences • Identify strengths in the individual, family and providers

21. Strategies for Improving Outcomes for Individuals With FASD • Establish achievable goals • Provide skills training • Use a lot of role playing • Remove tags from clothing if bothersome • Teach the use of calculators and computers • Be aware of language used • Use literal language • Use person first language

22. Person First Language • “A child with FAS”, not “a FAS kid” • “A person affected by FAS”, not “an affected person” • “A mother with FAS”, not “an FAS mom” • No one “is” FAS; people may have FAS • “A person with mental retardation”, not “the mentally retarded individual” • “the person with schizophrenia”, not “the schizophrenic”

23. Strategies for Improving Outcomes for Individuals With FASD • Be aware of, and discuss, misinterpretations of words or actions of others when they occur • Address issues of loss and grief • Have a lot of patience • Do not blame the person for what s/he cannot do

24. Strategies for Improving Outcomes for Individuals With FASD • Set the person up to succeed • Be creative • Use mentoring programs • The person with FASD having a mentor • The person with FASD being a mentor • The definition of success needs to be determined for each individual and family • View the individual and his/her functioning in our systems differently (a paradigm shift)

25. Paradigm Shift • “We must move from viewing the individual as failing if s/he does not do well in a program to viewing the program as not providing what the individual needs in order to succeed” • Dubovsky 2000