Minnesota Organization on Fetal Alcohol Syndrome. Modifying Substance Abuse Treatment for Individuals with Fetal Alcohol Spectrum Disorders

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Minnesota Organization on Fetal Alcohol Modifying Substance Abuse Treatment for Individuals with Fetal Alcohol Spectrum Disorders Minnesota Organization On Fetal Alcohol (MOFAS) Our

1 Minnesota Organization on Fetal Alcohol Modifying Substance Abuse Treatment for Individuals with Fetal Alcohol Spectrum Disorders Minnesota Organization On Fetal Alcohol (MOFAS) Our mission is to eliminate disability caused by alcohol consumption during pregnancy and to improve the quality of life for those living with Fetal Alcohol Spectrum Disorders throughout Minnesota. 1

Growing New Beginnings Growing New Beginnings Increasing Recognition and Response to FASD among Treatment Centers in Minnesota 4 Presentation Overview Define Fetal Alcohol Spectrum Disorders (FASD)

2 Growing New Beginnings Growing New Beginnings Increasing Recognition and Response to FASD among Treatment Centers in Minnesota 4 Presentation Overview Define Fetal Alcohol Spectrum Disorders (FASD) Describe the diagnostic criteria of Fetal Alcohol Explain the specific challenges for adults with FASD who are in treatment Provide indicators to help identify clients with FASD Provide techniques that can be used to modify treatment 5 Define FASD 2

3 Fetal Alcohol Spectrum Disorders (FASD) A group of birth defects that can result from prenatal exposure to alcohol May include physical, mental, behavioral, and learning disabilities Prenatal alcohol exposure affects each person differently Permanent damage, lasts a lifetime 7 The FASD Umbrella Fetal Alcohol Spectrum Disorders Fetal Alcohol (FAS) Partial Fetal Alcohol (pfas) Alcohol-Related Birth Defects (ARBD) Alcohol-Related Neurodevelopmental Disorder (ARND) Fetal Alcohol Effects (FAE) (replaced by ARBD & ARND in 1996) 8 Fetal Alcohol Spectrum Disorder FAS: Fetal Alcohol Need 3 of the following: confirmed prenatal alcohol exposure, facial features, growth deficiency, cognitive impairments PFAS: Partial Fetal Alcohol Symptoms include some facial features or growth characteristics but not all, still has behavior and attention issues, cognitive impairments 9 3

FASD Continued ARBD: Alcohol Related Birth Defects Symptoms include physical birth defects, may include heart, skeletal, sight/ hearing problems, joint anomalies, etc.

10 According to the SAMHSA FASD Center for Excellence FAS: between 0.

Center for Excellence. What You Need To Know: Fetal Alcohol Spectrum Disorders by the Numbers. DHHS Pub. No. (SMA)-06-4236.

4 FASD Continued ARBD: Alcohol Related Birth Defects Symptoms include physical birth defects, may include heart, skeletal, sight/ hearing problems, joint anomalies, etc. ARND: Alcohol Related Neurodevelopmental Disorder Symptoms include attention deficits, behavior disorders, adaptive functioning, learning disabilities, etc. 10 According to the SAMHSA FASD Center for Excellence FAS: between 0.5 & 2 per 1,000 births FASD: 10 per 1,000 births FASD is the #1 cause of preventable intellectual disability in America FASD affects 40,000 newborns each year SAMHSA Fetal Alcohol Spectrum Disorders Center for Excellence. What You Need To Know: Fetal Alcohol Spectrum Disorders by the Numbers. DHHS Pub. No. (SMA) Rockville, MD: Center for Substance Abuse Prevention, Substance Abuse and Mental Health Services Administration Of all the substances of abuse (including cocaine, heroin, and marijuana), alcohol produces by far the most serious neurobehavioral effects in the fetus. - Institute of Medicine Report to Congress, 1996 SAMHSA Fetal Alcohol Spectrum Disorders Center for Excellence. What You Need To Know: Effects of Alcohol on the Fetus. DHHS Pub. No. (SMA) Rockville, MD: Center for Substance Abuse Prevention, Substance Abuse and Mental Health Services Administration

5 Effect Alcohol Marijuana Cocaine Heroin Meth Low Birth Weight * * * * Impaired Growth * * Facial Malformation * * Intellectual & Dev. Delays * * * Hyperactivity, inattention * * * * Sleeping Problems * * * * * Poor Feeding * * * Excessive Crying * * * * Higher risk of SIDS * * Organ Damage Birth Defects * * Respiratory problems * * * 13 Alcohol & the Fetal Brain: Replication Migration Myelination Alcohol interferes with replication of brain cells and may cause early cell death. Alcohol interferes with the migration and organization of brain cells. Myelin is a fatty coating that enables brain signals to travel faster. Alcohol causes myelin damage and interferes with signal transmission. 14 Fetal Development Chart 15 5

Newborn baby s brain damaged by alcohol Decreased size Not fully divided into left and right hemispheres Smooth surface and fewer folds indicate lack of development Newborn baby s

writing) Memory for spoken and written messages Detailed analysis of information Facts, Rules, Order Right Side Judging the position of things in space Knowing body position

MRI of a 14-year-old control subject with a normal corpus callosum B. 2-year-old with FAS and a thin corpus callosum C.

6 Newborn baby s brain damaged by alcohol Decreased size Not fully divided into left and right hemispheres Smooth surface and fewer folds indicate lack of development Newborn baby s brain without prenatal exposure to alcohol Photo courtesy of Sterling Clarren, MD 16 Brain from Above Left Side Understanding and use of language (listening, reading, speaking and writing) Memory for spoken and written messages Detailed analysis of information Facts, Rules, Order Right Side Judging the position of things in space Knowing body position Understanding and remembering things we do and see Putting bits of information together to make an entire picture Impulses, Creativity 17 FASD and the Brain A B C A B C A. MRI of a 14-year-old control subject with a normal corpus callosum B. 2-year-old with FAS and a thin corpus callosum C. 14-year-old with FAS and agenesis (absence due to abnormal development) of the corpus callosum. Source: Mattson, S.N.; Jernigan, T.L.; and Riley, E.P MRI and prenatal alcohol exposure: Images provide insight into FAS. Alcohol Health & Research World 18(1):

7 Common Misdiagnoses or Co-occurring Diagnoses of FASD Attention Deficit/Hyperactivity Disorder Bipolar Disorder Major Depressive Disorder Posttraumatic Stress Disorder Obsessive-Compulsive Disorder Generalized Anxiety Disorder Oppositional Defiant Disorder Conduct Disorder Alcohol Dependence Alcohol Abuse Mild, Moderate, or Severe Mental Retardation Antisocial Personality Disorder Borderline Personality Disorder 19 Diagnostic Criteria Diagnostic Criteria for FAS Facial Features Growth Deficiencies Central Nervous System Abnormalities History of Maternal Alcohol Consumption 21 7

Facial Features of FAS Smooth philtrum (groove between nose and upper lip) Small

Most people with FASD do not exhibit any facial features.

8 Facial Features of FAS Smooth philtrum (groove between nose and upper lip) Small palpebral fissures (eye openings) Thin upper lip (photo of John Kellerman, " The facial features are only apparent in a very small number of individuals. Most people with FASD do not exhibit any facial features. 22 FAS Facial Characteristics Palpebral fissures Thin upper lip Smooth, long philtrum 23 Ethnicity and Characteristic FAS Facial Features Source: American Family Physician Vol. 72/No. 2 (July 15, 2005) 24 8

Control Mouse not exposed to alcohol Mouse exposed to doses of alcohol during gestation Sulik, K. K., & Johnston, M. C. (1982).

When they don't have a classic FAS face, the tendency is to act as though there's nothing wrong.

They get blamed for being lazy or careless, yet these people have functional brain impairments.

9 Control Mouse not exposed to alcohol Mouse exposed to doses of alcohol during gestation Sulik, K. K., & Johnston, M. C. (1982). 25 "People who don't have the facial features are truly discriminated against in terms of services. When they don't have a classic FAS face, the tendency is to act as though there's nothing wrong. They are expected to perform normally, but they're goofing up all the time. They get blamed for being lazy or careless, yet these people have functional brain impairments. ~Ann Streissguth 26 Growth Deficiencies Confirmed prenatal or postnatal height or weight (or both) at or below the 10 th percentile Documented at any one point in time Adjusted for age, sex, gestational age, and race or ethnicity " Some individuals reach normal height and weight for their age after puberty. 27 9

10 Central Nervous System Impaired Executive Functioning Difficulty understanding cause and effect Lack of impulse control Difficulties with planning, prioritizing, setting goals and executing strategies Unable to generalize concepts Trouble understanding abstract concepts 28 Central Nervous System continued Memory deficits Problems following multiple directions Problems with coordination, motor control Hypersensitivity to noise, light, touch Blowing fan, buzzing lights, itchy tags, too hot 29 Central Nervous System continued Hyperactivity, short attention spans Social inappropriateness Doesn t understand personal boundaries, body language, social cues Poor peer relations Naive, suggestible Acts younger than age 30 10

11 Benefits to FASD Diagnosis Relief and better self-awareness for the individual May help the individual qualify for services Improved understanding and communication between clients, clinicians, family members and more Reframing of expectations - realistic vs. unattainable 31 Specific Challenges for Clients with FASD Alcohol Abuse as a Secondary Disability Primary disabilities are those the child is born with. Secondary disabilities are those that develop as a result of failure to properly deal with the primary disabilities. A longitudinal study that examined secondary disabilities found that 35% of adults with FASD have problems with alcohol & other drugs Streissguth,

12 The cognitive impairments of FASD can interfere with the ability to be successful with typical treatment approaches. Difficulty with treatment based on verbal receptive language skills Difficulty with treatment based on processing information outside of session 34 Brain damage includes the following: Poor impulse control Difficulty connecting actions with consequences Easily over-stimulated Misses social cues How does this affect treatment? Relapse Doesn t learn from mistakes Group time less effective Ability to get along with others 35 Brain damage includes the following: Memory deficit Hyperactive, short attention span Unable to generalize concepts How does this affect treatment? Forgets rules, can t follow multi-step instructions Long therapy sessions unsuccessful Using refusal skills in multiple locations 36 12

13 Generational Cycle In a sample of 30 females with FASD who had given birth, 57% no longer were caring for their children 40% reported drinking during pregnancy 17% of the children were diagnosed with FASD 13% of the children were suspected of having FASD Lack of foresight, poor impulse control and poor judgment often lead to unprepared life events Identify Clients with FASD Process to Identify suspected FASD Identify which incoming clients have suspected FASD so that their treatment can be adjusted accordingly Treatment staff are not expected to do a diagnosis Use the indicators as guidelines and be flexible with what you say in order to solicit answers 39 13

14 Identifying suspected FASD Memory Deficits Maternal Alcohol Use Social Challenges Learning Challenges Attention Challenges 40 Maternal Alcohol Use How much alcohol did your mom drink when she was pregnant? Follow up with more questions (memories of mother pregnant with younger siblings and drinking, etc.) Consider information revealed from the family history of alcohol use portion of your intake Talk to other family members if possible 41 Maternal Alcohol Use Indicators Mother received treatment for alcohol/drug problems Mother was diagnosed with alcohol or drug problems Child removed from home due to alcohol/drug related problems Mother died due to complications of alcohol/drug use Other high risk behaviors: DUIs, injured while drinking, job or legal problems related to drinking Medical records indicating presence of alcohol/drugs at birth 42 14

15 Learning Challenges Think about when you were a child. How did you do in school? Math deficits (Abstract math is challenging) Didn t graduate high school Hyperactive/ADHD (Easily distracted? Can t sit still?) 43 Learning Challenges cont. Did you ever have special classes or tutoring in school? Learning Disabilities Emotional Behavioral Disabilities (EBD) 44 Social Challenges How would other people describe you as a kid? Immature (Do they tend to have younger friends? Can they perform jobs/chores appropriate for their age?) Clumsy/Uncoordinated Oppositional, defiant Inappropriate (missing social cues in group time, no filter when talking, not intentional) " Reflect on your observations of the client s social interactions with others 45 15

16 Memory Deficits Do you have trouble keeping appointments? How do you do with telling time? Missing appointments Difficulty telling time Can t follow multi-step instructions Doesn t learn from mistakes (even after feeling remorseful) Observed memory lapses (rules to a game, steps to completing a chore) 46 Previous Assessments Do results of previous assessments reflect functional challenges? VABS (Vineland Adaptive Behavioral Skills) MMPI (Minnesota Multiphasic Personality Inventory) MMSE (Mini-Mental State Examination) Other tests used by the treatment site Information from the client s records that is applicable (low IQ) 47 Techniques to Modify Treatment 16

17 Modify Expectations Individuals with FASD may break rules repeatedly because they forget them or cannot apply them Accept that the individual may have unique learning challenges The emotional and social age of adults with FASD is often lower than their chronological age 49 Developmental Skills Timeline SKILL DEVELOPMENTAL AGE EQUIVALENT Actual age 18 yrs Expressive language 20 yrs Comprehension 6 yrs Money and time concepts 8yrs Emotional maturity 6 yrs Physical maturity 18 yrs Reading ability 16yrs Social Skills 7 yrs Living skills 11 yrs Ann Streissguth, (Alcohol Clin Exp Research, Vol. 22, No. 2, April 1998) 50 Behavioral Expectations for Age Chronological ageappropriate expectation Developmental ageappropriate expectations Age 10 Read books Answer abstract questions Get along and solve problems Age 10 going on 6 developmentally Beginning to read, with pictures Mirror and echo words, behaviors Learn from modeled problem solving Age 13 Act responsibly Organize themselves, plan ahead Understand body space Establish and maintain friendships Have appropriate social boundaries Age 13 going on 8 developmentally Need reminding Need visual cues, modeling In your space Forming early friendships Diane V. Malbin

18 Don t Assume Lack of progress = lack of motivation Not following directions = noncompliant Lack of concentration = ambivalence Inability to recognize negative consequences = denial 52 Behavior Misinterpretation Accurate Interpretation Noncompliance Often Late Willful misconduct Attention seeking stubborn Lazy, slow Willful misconduct Difficulty translating verbal directions into action Can t understand abstract concept of time Stealing Lying (confabulation) Deliberate dishonesty Lack of conscience Sociopathic behavior Lack of conscience Doesn t understand ownership (abstract) Immature thinking Memory/sequencing problems Trying to please 53 Learning the Language of FASD Use concrete words, be very literal Give directions that are simple and brief Repeat, repeat, repeat Check for understanding, What does this (e.g., rules, instructions) mean to you? Present ideas or instructions one at a time 54 18

19 Abstract Concepts Why Wait Listen Watch Get in line Do you understand? Later Be responsible What are you feeling? Consequences Get started Clean it up Do it right Respond Join Ask for help Choose Predict, plan ahead, set a goal 55 Concrete Language Show me What s easy? What s hard? What does it make you want to DO? Tell me Can you draw it? Come with me Now Go to Let s start here (demonstrate) It s time to go when What works? 56 Motivational Interviewing General Principals of Motivational Interviewing Express empathy Develop discrepancy Roll with resistance Support self-efficacy 57 19

20 Motivational Interviewing cont. Take abstract concepts and make them concrete Instead of asking them to describe their lifestyle (too abstract), ask them what they did last weekend, yesterday, etc. Instead of asking what they want in the future (too abstract), ask them what they want to be doing next week, by their next birthday, etc. 58 Motivational Interviewing cont. What has happened to you in the last week (or today or yesterday)? What difficulties do you have? When do you do this behavior? What happens when you do this? How have you been since your last birthday? What fun things have happened? What not so good things have happened? 59 Motivational Interviewing cont. What do you want for yourself in the next week? The next year? When you are on your own? Is there anything you want to change (or you hope gets better)? Would your behavior get in the way of that plan? (If so, ask how. If not, point out how it might.) Is there any way to not have that happen? 60 20

21 Motivational Interviewing cont. Keep a record of everything you discuss, write it down to make it visual Example: A list of good things about their substance use and a list of not so good things about their substance use. Good Things I belong, people accept me Not So Good Things My kids are in foster care 61 Motivational Interviewing cont. Help them process all of the information in the session while they are with you Provide more help with decision making Do you think if we could get more of the good things without some of the not so good things, that would be helpful for you? Lets talk about what you can do about that Can I share with you what other people have found to be helpful? 62 Modify the Environment Individuals with FASD cannot change how their brains work, so we must adapt the environment to them Prepare environment to avoid sensory overload, reduce distractions Maintain a routine, set consistent appointment days and times 63 21

22 Modify the Environment Some Options: Sunglasses Dim the lights Hat Hood Headphones Earmuffs Different chair Weighted blanket Fidgets Gum Music Calm space 64 Use of Visuals, Reminders Lots of reminders: notes/signs posted around their space, calendars, audio recorder, visual timeline Sand hourglass timers, use timers on cell phones and watches Flip-book of pictures of tasks, picture of socks on sock drawer Assist the client with writing in a day planner/ calendar " Remember to keep expectations reasonable and recognize their difficulties 65 Consequences Immediate, right after action Put the rules in writing Discuss actions and help them strategize ways to follow the rule in the future Role play and practice appropriate responses Help them recognize their own successes, encourage them to express how they feel about their own actions 66 22

23 Individual vs. Group Therapy Emphasis on individual therapy, schedule short, more frequent sessions instead of long sessions If they attend group therapy, only small amounts of group time with small sized groups is recommended Homework may be more experiential instead of insight-oriented Explain to other clients that fair same and that treatment is individualized 67 Concrete Adaptations Who Am I? - Baby book, family scrapbook, letters or pictures What do I Believe? Gray areas difficult, black & white thinking Who are my Friends? - Friendship map Dating plan, pictures, role playing and scripts Concrete plan for feelings of rage- treadmill, call a support person, time alone Expect that it may take time to apply new skills to daily life 68 Address the Stigma of FASD If they do have a FASD diagnosis... Be ready to help them identify and process their feelings Help them understand that they are not responsible for their disability Teach them about the challenges they have related to the prenatal exposure 69 23

24 Teach Sexual Boundaries When is it okay for you to touch someone or for him or her to touch you? How/Who can touch you and who can you touch? Teach stranger danger Talk about vulnerabilities Use clear, simple language and demonstrate birth control, don t assume they can read between the lines 70 Role Playing The key is to link talk therapy to concrete, physical representations of the issues. Susan L. Baxter Fantastic Antone Grows Up Concrete activities will, at the same time, help develop expressive language skills - Refusal skills, work on applying skills to many situations - Be very repetitive - Use visuals/pocket guides to help remind them of appropriate responses 71 Rage Behaviors/Meltdowns Recognize signs of over-stimulation (rocking, tense muscles, shutting down, chewing clothing, rapid breathing) Redirect before rage, change activity and they might follow, offer another option Determine the cause (can the environment change to avoid this next time?) Talk in a calm voice Encourage them to verbalize their stress, what they are feeling (teach to say I m mad ) 72 24

25 Transitioning out of treatment & ongoing support Over-plan for unstructured settings Hand deliver client, have a co-session with the old support person and the new support Find non-alcoholic leisure activities they can enjoy Provide an opportunity for alumni to gather periodically Visit places where they ll need to resist temptation: grocery stores, gas stations, sporting events 73 Re-evaluate the Situation When a situation is confusing and an intervention is not working: STOP ACTION! OBSERVE LISTEN CAREFULLY ASK-WHAT IS HARD? WHAT WOULD HELP? (Never ask WHY. Why can be too abstract.) 74 8 Essentials for Success Concrete Supervision Consistency Structure Repetition Specific Routine Simplicity From 8 Magic Keys developed by Deb Evensen and Jan Lutke

26 Professional Paradigm Shift From To Assuming Punishing Changing people High expectations Failure Observing Preventing problems Changing environments Appropriate expectations Success Diane Malbin, M.S.W. 76 Don t Try Harder Try Differently If you ve told a child a thousand times and he still does not understand, then it is not the child who is a slow learner. - Walter Barbee Contact Information: MOFAS kendra@mofas.org Phone:

Teresa s Background. Close Family. Sources. The Faces of FASD. Today We Will Learn About

Teresa s Background. Close Family. Sources. The Faces of FASD. Today We Will Learn About Fetal Alcohol Spectrum Disorders Understanding Effects Improving Outcomes Part 1: The Faces of FASD Presentation by Teresa Kellerman Director of the Fetal Alcohol Resource Center Arizona Division of Developmental