2. 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

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

4. 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

5. 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.

6. 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

7. 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

8. 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

9. 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

10. 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

11. 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

12. 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

13. 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

14. 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

15. 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

16. 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

17. 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

18. Overall Difficulties in FASD Dubovsky (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

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

20. 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

21. 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

22. 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

23. 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”

24. 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

25. 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)

26. 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