FASD Prevention and Intervention Should be a PRIORITY in Addiction Treatment and Mental Health Settings

Transcription

1 Level 1 Competency III Treatment Strategies for Working With Clients With an FASD FASD Prevention and Intervention Should be a PRIORITY in Addiction Treatment and Mental Health Settings Early identification of children with FASD can reduce secondary disabilities and improve outcomes for future success Women with addictive diseases are at very high risk for having children with FASD Women who drank during one pregnancy are likely to drink during all pregnancies FASD is a preventable disorder that has lifelong implications!!! Introduction The provider needs to consider different approaches when working with adults, adolescents, and children with FASD. Adults have been living with FASD for a long time and face many challenges. Adolescents must cope with the difficulties of FASD, puberty, and alcohol problems. Although few children present with alcohol problems, the addiction professional will undoubtedly encounter children with FASD when working with women with alcohol problems. Part of the counselor s work will be helping clients whose children have FASD learn to manage their children s disability while coming to grips with their feelings about drinking while pregnant. 1

2 Adults Inappropriate educational environment Vulnerable to social pressure and need for acceptance Multiple placements Behavioral reactivity Adult with FASD Loneliness Lack of identity Speech and Language Emotional meltdowns Social Skills Disability Unrealistic expectations Delay in independence Negative messages Lockhart, P Adults with FASD often experience multiple risk factors in multiple domains. Risk factors include inability to find and maintain employment, difficulty in obtaining stable living environments, persistent conflict with family members, and bonding difficulties with interpersonal relationships. If areas of risk are not buffered by protective factors, people with FASD will be at risk for alcohol and drug problems, and many will need treatment. Streissguth and colleagues conducted a study in which 21 percent of those with fetal alcohol syndrome had substance abuse problems and 32 percent of those with other fetal alcohol spectrum disorders had substance abuse problems. 1 It has been found that approximately half of all persons with FASD will experience some conflict with the law. 2 Treating adults with FASD is extremely complex and little has been written about this specific treatment. 3 However, promising strategies that have been proposed for working with clients with FASD reflect some of the successful approaches used in advocacy programs. Examples include mentoring and family involvement. Persons with FASD seem to respond well to mentoring, one-to-one relationships where they feel a personal bond with a staff member who acts as an advocate. 2

3 How Might I Identify a Client with possible FASD? Assessments to include: Recidivist client? Tell me about your birth experience, what was your birth weight? Any infant/childhood health issues? Ear infections as an infant? Did your mom drink, was she an alcoholic? Were you raised in foster care? Adopted? Any developmental, learning issues? Ever in special ed? What was your best subject in school? Reading? Math? Ever diagnosed with ADD or any other MH disorders? Which one s? Assessment and Treatment Plan Development The assessment process for adults with FASD or who are suspected of having FASD requires counselors to gather and use information regarding limitations and strengths specific to FASD. In addition, they need to use developmentally appropriate assessment tools to assist in identifying needs and planning support. The assessment process should identify skills, areas of vulnerability, and stresses. People who fail in treatment may have an unrecognized fetal alcohol spectrum disorder. Although they will often say that they know what they need to do, they may not follow through for a number of reasons. They may have difficulty following multiple directions, recalling rules, and applying what they have been told to do in real-life situations. FASD presents unique challenges in supporting the person affected by it. Personal performance varies due to the different areas of the brain affected by prenatal alcohol exposure. Malbin describes the personal experience of not being able to rely on your brain to perform consistently day to day as terrifying. 4 A person with FASD experiences great inconsistency in abilities. He or she can do something sometimes and at other times not remember how to do the same task. To the outsider the person can seem stubborn or willful but in reality he or she forgets how to do the task. 5 Due to the organic nature of the brain damage it has been found that skills often will not be remembered. Different types of support are needed because of constant changes in skill levels and associated memory lapses. The emphasis needs to be on adapting the environment because people cannot change how their brains work. The environment is taken in its broadest sense and includes personal, physical, social, cultural, and institutional components. Setting consistent appointment days and times Scheduling short, more frequent sessions and limiting the number of meetings Arranging for someone to get the client to appointments or meetings 3

4 Limiting the number of treatment plans or steps involved in the treatment plan Establishing goals that are realistic, outcome oriented, and time specific Talking to the individual and family about their goals Breaking steps down and working on one step at a time Reviewing what happens at meetings and processing the information The treatment plan also needs to include further assessments by medical, mental, and allied health professionals (e.g., pharmaceutical, hearing, speech, occupational therapy, physical therapy, and mental health). Persons with FASD function at varying levels, so it is important to assess the client s functioning in various areas, such as mobility, vision, hearing, and speech. Services such as health care, medication, and speech therapy may be needed in conjunction with alcohol treatment to ensure that the client can participate meaningfully in treatment. Adults Long term case management vocational rehabilitation (job coaches) reproductive health (appropriate birth control) transition planning housing peer/recreational involvement Developmental disability services Medicare/caid SSI 4

5 Chronological Age vs. Developmental Age As seen in the diagram, the emotional and social age of adults with FASD is often lower than their chronological age. The table shows cognitive impairments that can lead to inappropriate behaviors. These behaviors can interfere with the person s ability to participate in treatment. Understanding the reasons for the behaviors can help in adapting treatment to meet the person s needs. Source: Malbin, D Fetal Alcohol Syndrome/Fetal Alcohol Effects: Strategies for Professionals. Center City, MN: Hazelden Educational Materials. Expect and Be Prepared For: Inconsistent behaviors Problems with perception and de-coding information Problems with decision making May not understand time Impulsiveness Poor judgment Distinguishing between public and private behaviors Frustration with transitions Easily led Need for increased 1:1 sessions Need for a mentor or buddy 5

6 Cognitive Impairments That Lead to Inappropriate Behaviors Impairment Memory problems Failure to understand ownership Little understanding of value of objects Slow cognitive or auditory pace Poor judgment Attention deficits Arithmetic disability Memory impairment Difficulty abstracting Disorientations in time & space Impulsivity Impaired sensory thresholds Confabulation or alternate frame of reference Impaired body boundary conceptualization Inappropriate Behavior Lying Stealing Destructive behavior Defiance Easily victimized Unfocused/ distractible; poor functioning in school or work environments Difficulty handling money Difficulty learning from experience Difficulty understanding consequences, telling time, understanding concept of days, weeks or months, and understanding ownership Difficulty perceiving social cues Poor frustration tolerance, safety issues, and issues with the law Difficulty with concentration, frustration, rage; and occupational performance (i.e. school) Seen as lying to outsider but viewed as his/her reality or "truth" Overly friendly, personal safety issues, and sexual victimization Source: Adapted from Streissguth, A Fetal Alcohol Syndrome: A Guide for Families and Communities. Baltimore, MD: Paul H. Brookes Publishing Co., p. 106, 1997; and Leveille, R. (Producer/Director). No date. Fetal alcohol syndrome and effect: Stories of help and hope [Film]. Center City, MN: Hazelden Educational Materials. Understanding the causes of inappropriate behaviors can help in establishing procedures to govern the conduct of clients with FASD. Persons with FASD are rarely cruel or hostile. What looks like lying may be an attempt to cover a memory lapse by making things up. Stealing may be an attempt to buy friends with nice things. Anger and frustration may result from sensory overload or difficulty processing information. Similarly, the person with FASD may appear defiant and refusing to complete tasks. In reality, the person may be avoiding the task due to fear of failure or an inability to understand the instructions. 6

7 Cognitive, Behavioral, Emotional and other Problems Can Each Appear Across a Continuum of Severity Cognition Behavior Social Skills Speech and Language Mild Mild Mild Mild Poor insight and judgment, poor planning, impairment in short term memory and processing speed Aggression, temper outbursts, impulsivity Poor boundaries, difficulty reading facial expressions or body language pragmatic speech, receptive and expressive language Severe Severe Severe Severe Emotion Mild anxiety and mood Severe Motor Skills Mild Fine, gross motor skills impairment Severe Lockhart, P Ways To Modify Facility Treatment Plans and Staff Expectations Traditional treatment plans tend not to work with adults with FASD, because their cognitive and social deficits make it difficult for them to process information or participate in groups. Some experts in the field recommend specific modifications. 6, 7 Programs that work with various groups of adults with FASD have found that mentoring, with the one to one relationship and the development of a personal bond with a staff member, can be very effective. This relationship helps the person by: Allowing for the development of concrete and consistent rules that will guide behaviors in specific situations Allowing for development of personal scenarios with the adult to work out responses and practice these through role play One helpful concept is KISS- Keep It Super Simple. One or two goals written simply is a more understandable and effective plan. Focusing on short-term goals also helps, because persons with FASD have a hard time with abstract concepts such as the future. It also helps to engage the person from the beginning to develop her own strategies. Clients are the experts on their lives. They often know their strengths and interests and can usually identify problems. 7

8 Adults with FASD I get you, but I can t figure out how to do it by myself I can see what you re saying, but I can t listen to your words I know in the moment, but forget later I can t do all of the time what I can do some of the time Ory, N 2004 Group participation may be difficult for persons with FASD. They can become overwhelmed by sensory input from large groups, small spaces causing crowding and touching of others, noise, and visual distractions. In addition, they may not be able to process everything in the discussion and can get lost. Printed material may be helpful but should be written at about a grade 4 level with clear nondistracting page layout. The cognitive dysfunction seen in FASD also makes group participation difficult. The counselor can assist persons with FASD or suspected of having FASD by making some accommodations: Explain group expectations concretely and repeat these ideas often. If a person monopolizes conversation or interrupts, use a talking stick as a concrete visual reminder of who should be speaking. Hand the stick to the person whose turn it is to speak and pass the stick to others as appropriate. Give the person time to work through material concretely within the group time so he or she may ask questions or you may check understanding of material. He or she may need extra time to process information. Listen for key themes to emerge slowly through the person s talk and behaviors. 8

9 Communication Check often for client understanding. Review written materials. Repeat information. Use simple, concrete language. Present ideas or instructions one at a time. Counseling Strategies Due to the cognitive, social, and emotional deficits seen in FASD, counseling clients with these conditions requires adaptability and flexibility. Traditional approaches may not work and more effort may be needed to convey basic concepts. Many issues arise in counseling adults with FASD. It is important to: Set appropriate boundaries Be aware of the client s strengths Understand the impact of any abuse the client has experienced Help the client cope with loss Address the stigma associated with an FASD Focus on self-esteem and personal issues Address resistance, denial, and acceptance 9

10 New Therapies Provide Hope Pharmaceutical (improving cognition, reduction of anxiety and mood problems) Counseling (family support) Environmental (structure, mentoring, etc.) Parenting therapy Speech and Language (social skills practice) Occupational Therapy (motor and sensory) Behavioral Therapy Boundaries It is important to establish a trusting and honest relationship while maintaining boundaries. Persons with FASD lack social skills and may make inappropriate comments, ask inappropriate questions, or touch the counselor inappropriately. To set boundaries, it may help to have the client walk through the rules and expectations and demonstrate expected behavior. Frequent role playing can help the client learn to apply concepts and figure out how to respond to various situations. Persons with FASD frequently experience memory loss, so it is important to review rules regularly. It is much more effective to limit the number of rules, review them repeatedly, and role play different situations in which the person will need to recall the rules. Repetition is key. Assuming that a person with FASD can remember because he or she has a normal IQ is a mistake. FASD causes brain damage that can affect the ability to recall or apply rules. Individuals with FASD are at risk for victimization. Counselors need to assist clients to establish healthy relationships and provide resources and support to reduce the incidence of victimization. 10

11 Individuals with FASD are at risk for victimization. Functioning at a lower developmental age, BUT may have appearance of being higher functioning Understanding & remembering stranger-safety Difficulty with abstract thinking (predicting future behaviors) Retrieving information, ST memory Difficulty translating from brain to behaviors (thinkingspeaking, hearing-writing) Difficulty comparing & contrasting Understanding cause-effect relationships Mitchell, K Strengths Many people focus on the disabilities in persons with FASD, but they have many strengths. Some of these can be used in the treatment setting as part of counseling. For example, some people with FASD are quite creative. 8 They can express themselves through art and music, which may prove more effective than traditional talk therapy. Other approaches may involve storytelling and writing, talents seen in some individuals with FASD. 9 These techniques can also be used for practical matters, such as developing a poster with treatment goals. Persons with FASD often have good visual memory, so drawing pictures of their goals may help them recall them better than written goals. 10 Helping clients to accept their disability will ultimately help them to move forward in their recovery journey. 11

12 Accepting their disability Help client recognize their disability in reasoning, judgment and memory Help client understand that everyone has strengths and weaknesses Accept client for who they are today -not who they will be if they do this and that Ignore some of their issues/difficulties Recognize their effort to improve History of Abuse Children with physical, psychological and sensory disabilities are known to be more vulnerable to violence and maltreatment, or to be at a greater risk of these forms of abuse. 11 Children of parents who abuse alcohol are also at high risk of abuse and neglect. 12 In addition, children in foster care face a risk of maltreatment, which can affect their physical health and lead to attachment disorders, compromised brain functioning, inadequate social skills, and mental health difficulties. 13 Many persons with FASD experience multiple foster care placements and have a history of abuse within the foster care setting. Some were abused in their family of origin, leading to foster care placement. Childhood abuse can lead to posttraumatic stress and place the person at risk of substance abuse problems as an adult. Preliminary data from a cross-site evaluation of demonstration grants funded by SAMHSA's Center for Substance Abuse Treatment finds that 76 percent of clients in treatment programs for women with children report a personal history of abuse, neglect, or trauma. About a fourth report physical abuse by a parent, a third report emotional or psychological abuse by a parent, and slightly over 10 percent report sexual abuse by a parent. Many more report physical, emotional, or sexual abuse by a nonparent (over three-quarters report physical and emotional abuse and about one-half report sexual abuse). 14 Given the risk of abuse among persons with FASD and substance abuse problems, it is likely that clients with an FASD will have a history of abuse. This abuse can cause long-term damage to mental health and further impair the person s already compromised ability to form healthy relationships. The counselor working with persons with FASD needs to be sensitive to the possibility of childhood abuse and other forms of victimization and their impact on the counselor-client relationship. 12

13 A common theme that counselors need to be attentive to in this respect is powerlessness. This theme is often carried in the following types of client communications and behaviors: Clients undervaluing their own competencies Clients viewing others needs and goals as more important than their own Clients inability to obtain nurturance and support for themselves Clients feelings of depression, anger, and frustration about their lives Clients low expectations for their own success Loss and Grieving All individuals with FASD have experienced losses in their lives. The fact that they are not like their peers is a loss of the ability to be like everyone else. Some have the loss of the hopes and dreams of what they wanted to be. Others lose their family or a secure future. Some lose the opportunity for meaningful peer relationships and friendships. Other losses can include: Consistent caregivers due to multiple home placements Vocational and educational opportunities A role in the family and in society Joy and pleasure in life These losses can affect people in many ways and need to be addressed. The counselor can: Use active listening strategies, such as repeating what the person has said Be honest Raise awareness of experiences of separation and loss Acknowledge losses experienced Validate losses experienced Avoid good parent/bad parent issues Support confronting losses in a positive manner Encourage communication Genuinely care Be there for support Acknowledge his or her own feelings about loss Refer for further treatment (e.g., mental health) when necessary Stigma Stigma is a major issue with FASD. There is a huge stigma around pregnant women drinking, which can lead many to avoid talking about it. Their children might not be diagnosed until they are teens or adults. A counselor needs to be aware of this stigma and approach the issue carefully and sensitively if he or she suspects a client has FASD. Persons with FASD may also feel the stigma. The negative judgment toward the mother may be visited on the child. In addition, despite the advent of the disease model, many people still view alcohol problems as a sign of moral weakness or a character flaw. Those who do not understand 13

14 FASD may think that people with the condition are just making excuses for their alcohol problems. Given their cognitive, social, and emotional deficits, persons with FASD may feel powerless to change and stuck with the stigma forever. It is important to work through this issue with clients with FASD. They need to understand that they are not responsible for their disability and that they deserve respect. They also need to know that change is possible. Self-Esteem and Personal Issues Not surprisingly, abuse, loss, grief, and stigma can lead to self-esteem issues. Persons with an FASD who have alcohol problems face a double-edged sword. Their self-esteem can be damaged by their experience with FASD and by their drinking problems. The counselor can use several strategies to help address self-esteem and personal issues: Use person-first language: A fetal alcohol spectrum disorder may be part of who a person is, but it is not the person s entire identity. Someone can have FAS but nobody is FAS. The Arc: For people with intellectual and developmental disabilities Do not isolate the person: Sending persons with an FASD out of the room to think about what they have done or keeping them out of a group will most often only increase a sense of isolation. Do not blame people for what they cannot do: Demanding that people repeatedly try to do things they cannot do is a lesson in frustration. It is important to have patience and understand individual limitations. People with an FASD may need something repeated several times because they have trouble remembering, not because they refuse to pay attention. Set the person up to succeed: Measures of success need to be different for different people. It is important to identify what would be a measure of success for the individual and to ensure that those with an FASD succeed within this context. Training in social skills, anger management skills, and relaxation skills can help. 14

15 Resistance, Denial, and Acceptance Resistance to treatment is common among persons with alcohol problems. Denial of the problem can persist for years. Women with FASD may also deny that they have a disability. Although some are relieved to know the cause of their difficulties, others may feel the stigma and have problems confronting their disability. They may fall prey to unhealthy relationships that foster continued alcohol abuse and think nothing is wrong, because all their friends are drinking. The counselor working with a client with FASD needs to take time to help the person cope with the stigma and fear surrounding FASD. Reassuring clients that they are not responsible for their disability and helping them forgive their mother for drinking while pregnant can help. This process may take a while and the person may drift back and forth from accepting the disability to denying it. Exploring the reasons for the denial and understanding the client s fears can help. Some women may think that they are supposed to blame their mother and be fearful of the impact that accepting FASD could have on their relationship. Others may fear becoming like their mothers and having a child with FASD. Talking about the issues can help the client open up and accept treatment. It may be more important to address FASD in the beginning than the alcohol problems. Understanding and addressing FASD may help the client see the implications of her own alcohol problems and be more ready to take steps toward recovery. Motivational Coaching Motivational coaching, or motivational interviewing, is based on stages of change theory. It involves helping people make decisions for themselves along the stages of change. 15 Because of their cognitive deficits, women with FASD may take longer to go through the stages and may need to repeat stages. Multiple conversations at each stage may be needed to reinforce important points. Motivational interviewing strategies can help people stay focused and avoid getting sidetracked. It is important to reinforce statements that indicate a willingness to consider change. Resistance may indicate a different stage of change than previously thought. The goal is to understand where the person is and guide the process accordingly. Motivational interviewing has been shown to be effective with pregnant women and women of childbearing age. 16 However, it has not been tested at length with these groups and has not been specifically tested with women with FASD. Education, Direction, and Support for Families Family members, partners, or friends, may be good sources of information about a person s behavior and support network. It is important to obtain consent to discuss the client with family members and friends. Some people might need a break from the stress of dealing with the client s situation. By respecting this need and working with family members, partners, and friends, the counselor can gently bring them in to support the client. 15

16 The counselor can provide support in a number of ways: Arrange for respite care or a community support worker. Educate family and friends about FASD to help them understand the client s behaviors and adjust the home environment accordingly. Connect family and friends with support groups or other community resources. Access the NOFAS national and state resource directory here. Help find long-term mentors for clients. Family members or friends who have become exhausted or burned out dealing with an FASD may be willing to help after a mentor has stepped in for a while and the client has made progress. 17 Encouraging family and friends involvement is important. It can make the difference between living at home and needing intensive case management for supported living. 18,19 Issues Facing Families Affected by FASD Role of family in preventing alcohol- exposed pregnancies Need for family to accept client s s disability Anger toward birth mother Appropriate Birth Control and Referral for Pharmaceutical Assessment Women with FASD can be vulnerable to exploitation and unintended pregnancy. They may have sex to gain favor or to get financial help or housing. It can be difficult for them to use contraception effectively due to memory lapses, problems following instructions, or difficulty negotiating contraceptive use with a partner. Counselors can help clients evaluate their family planning needs and assist in obtaining reliable, long-term birth control methods. The counselor may need to accompany the client to a doctor appointment to help her understand her options and choose the best one. One study found improved use of contraception among young women with FASD by implementing a community intervention model of targeted education and collaboration with key service providers, and by using paraprofessional advocate case managers as facilitators

17 In some cases, pharmaceutical options may be appropriate. The counselor may want to refer the client for an assessment to determine whether she can follow a regimen of taking a pill everyday or getting a shot every few months. It is also important to consider the possible physical impact, since persons with FASD may have health problems and be prone to side effects. Ongoing Assessment for Comprehension of Information Women with FASD may appear to understand when they do not. They can often repeat information without understanding it. It is important to provide consistency and recheck the retention of information often. Ask the client to summarize what you have said. Review written material, such as rules, at each session. Do not assume that the client is familiar with a concept or can apply it because you have reviewed it multiple times. Remember, the only consistent thing about FASD is inconsistency. A client can know something on Monday and forget it on Tuesday. Repeat, repeat, repeat. Transitional Planning and Case Management Part of the counselor s role is to prepare for discharge of the client from your service. This involves working to establish a network of community resources and providers of service who will continue to provide support and advocacy when your role is complete. Providing these supports with education about FASD and this person s unique patterns of behavior is an important part of successful transitioning. Locating a long-term mentor within the person s sphere of relationships can be another way to support the transition to the person s own community. Providing tips and strategies for things that have worked well with the person can enable the mentor to provide support in the future. 21 Adolescents Adolescents present many challenges for the counselor. They tend to be resistant to counseling and will often deny they have a problem. Adolescents with FASD and alcohol problems have a multitude of issues. Some may deny their disability as well as their alcohol problem. Some may blame others for their difficulties. Others may be relieved to find out they have FASD, as it will help explain their problems. Interestingly, researchers found that FASD children had higher rates of lying and had better learned how to lie successfully. 22 The counselor needs to start where the client is and be sensitive to the special needs of adolescents with co-occurring FASD and alcohol problems. 17

18 Adolescents With FASD May be used to using blame as their coping mechanism Drugs/alcohol? Drawn to negative peers and behaviors Easily led into both negative situations and POSITIVE situations May be ashamed to admit disability Treatment Plan Development It is important to remember that adolescents are not miniature adults, especially adolescents with FASD, who may function socially and emotionally at a much younger age. The treatment process must incorporate the nuances of the adolescent's experience. In developing treatment plans for adolescents with FASD, it is important to consider cognitive, emotional, and social limitations, as well as risk factors that led to their substance abuse. Many youth with FASD have grown up in less than ideal environments, facing parental substance abuse, economic deprivation, abuse, and multiple foster care placements. These situations can increase their risk of alcohol abuse. 18

19 Adolescence Immaturity ADHD Moody, temper tantrums Can t take responsibility Few or no friends Using substances Poor generalization Poor cause and effect reasoning Doesn t learn from mistakes Inappropriate Steals, tells tall tales Lack of independence for age It is generally believed that traditional forms of therapy such as talk therapy cannot work with adolescents with FASD. Their cognitive deficits prevent them from developing insight or applying lessons to their real lives. However, with creativity and flexibility, a treatment plan can be developed that includes techniques that counselors are familiar with and comfortable with adapted to fit the needs of youth with FASD. 23 Wide range of strengths and weaknesses Wide variability of function day to day. Fluctuating attention and focus. Cannot apply lesson to other situations Looks and sounds smart acts disabled Ory, N Many of the principles for working with adults apply to adolescents in terms of their ability to function in a group setting. Individual counseling may be needed to avoid some of the issues that arise in youth with FASD who lack social skills and find group settings confusing or overwhelming. Talk therapy can be modified to incorporate role-playing, practice dialogues, 19

20 play therapy, art therapy, and other methods that can draw on many of the strengths seen in youth with FASD. Information on treating adolescents with FASD and alcohol problems is scarce, but some ideas can be found in existing programs. For example, a program at Keystone Treatment Center in South Dakota addresses issues typically seen in these youth and suggests a protocol. These principles may be helpful in developing treatment plans. Adolescents with FASD show hyperactivity, are easily distractible and restless, have poor impulse control and poor judgment, are easily influenced by other people, have difficulty in learning from past experiences, and are uninhibited. They do not recognize dangerous situations and tend to trust anyone. They have memory problems, lack flexibility, and cope poorly with change. Many are genetically predisposed to addiction and many are forced into chemical dependency treatment. The average patient at Keystone with fetal alcohol problems has an I.Q. from 65 to 85. They socially function at the level of a 7 to 9 year old child. 24 Choline supplementation during adolescence mitigates working memory deficits Choline is obtained from the diet (eggs, liver) & can be administered as a nutritional supplement Perinatal supplementation leads to life-long cognitive enhancement Childhood supplementation mitigates learning deficits, reduces hyperactivity & perseveration During adolescence, did not mitigate overactivity or spatial learning Thomas, J., 2010 There is some promising research. Simple interventions such as choline supplementation have been found to mitigate many of the behaviors seen in adolescents with FASD. Recent studies performed on rats have shown that prenatal choline supplements can enhance brain performance and development. Choline is an essential nutrient that influences brain and behavioral development. Furthermore, these supplements may even reduce the risk of alcohol effects on fetuses, and could be important for women who drink heavily during pregnancy. 25 In developing a treatment plan, the following points might be useful 26 : Assist the child to adjust to a structured program or environment and learn how to trust the staff. Youth with FASD tend to be trusting and need a great deal of structure but may have trouble adapting to changes in routine and to new people. Share the rules early and often. Put them in writing and constantly remind the youth of the rules. Keep the rules simple and avoid punitive measures that most youth with FASD will not process. If they break a rule, remind them what it is and help strategize ways to help them follow the rule in the future. Take a holistic approach, focusing on all aspects of the adolescent s life, not just the alcohol abuse. Include basic living skills and social skills, such as how to dress, groom, present a 20

21 positive attitude, and practice good manners. Help the client to develop appropriate goals within the context of her interests and abilities. Provide opportunities to role play or otherwise practice appropriate social behaviors, such as helping others. Areas of focus may include impulse control skills, dealing with difficult situations such as being teased, and problem solving. In an inpatient setting, allow time for the youth to be stabilized and acquire the basic skills to cooperate with others before discussing their chemical dependency issues. In an outpatient setting, it may help to develop a rapport with the client and establish trust and communication before addressing chemical dependency. Include refusal skills training. Youth with FASD will often try to please others and will engage in risky activities to fit in. It is important to help them learn to turn down alcohol. Assign a coach or mentor to meet or talk with them everyday in recovery to discuss plans for the day. Include the family, such as parent education about FASD and addiction and strategies for parenting youth with FASD and substance use problems, such as avoiding power struggles and building their child s self esteem. Help parents and other family members practice communication skills, such as active listening and using literal language. People with FASD have trouble understanding slang, metaphors, and other figurative speech. Include family meetings in the treatment plan, with a clear purpose and agenda. Work with the youth s school to include appropriate educational arrangements during treatment. Incorporate multiple approaches to learning, such as auditory, visual, and tactical approaches. Avoid written exercises and instead focus on hands-on practice and role playing. Use multisensory strategies, such as drawing, painting, or music, to assist the client in expressing feelings. These strategies take advantage of skills that many youth with FASD have. They can also help youths to share difficult feelings, such as fear and anger, that may be hard to talk about. Arrange aftercare and encourage parents to participate in a support group to continue to learn parenting skills and to be encouraged in the recovery process. Medical and Mental Health Assessments Diagnosis is important and the counselor should refer clients suspected of having FASD for diagnosis by a team familiar with FASD. A complete history and physical examination by a physician is essential. Further neuropsychological testing and assessment by a pediatric morphologist and neuropsychologist may also be warranted. If a client already has a diagnosis, further assessment by medical, mental, and allied health professionals may be needed to determine current level of function. The counselor will need to be familiar with any medication and observe any behaviors or physical symptoms that might indicate the need to reevaluate medication use or dosage. Hearing and speech tests may be warranted to identify any progress in communication or barriers that may affect the client s treatment and ongoing recovery. Occupational therapy and physical therapy evaluations may be needed to assess the client s daily living skills and motor function. In addition, the Wide Range Achievement Test may be used to determine achievement levels in reading, spelling, and math. Other helpful instruments include the Millon Adolescent Clinical Inventory (MACI), a validated clinical and personality assessment tool that measures change over time, 27 and a Social History. The social history may include information about family and 21

22 occupation and assessment of cigarette and alcohol use and/or substance abuse. It should also note developmental milestones. Some treatment programs assess clients using the Vineland Adaptive Behavior Scales 28 to determine how the client compares to peers in receptive, expressive, and written communication; personal, domestic, and community daily living skills; and interpersonal relationships, play and leisure time, and coping skills. This information will help the counselor tailor the treatment plan and counseling strategies to the client s strengths, needs, and preferences. Ongoing Assessment for Comprehension of Information As with adults, it is important to check often to make sure the client understands what has been said. Ask the client to summarize what you have said. Review written material, such as rules, at each session. Repeat, repeat, repeat, even if the client says, You ve told me this a hundred times. The client with FASD may be able to repeat information but that does not mean he or she understands it. For adolescents, applying concepts can be difficult. Cognitive deficits, the frustration of having FASD, and typical teen rebellion can make communication especially hard. Role playing different situations, providing opportunities to share and process feelings, and giving the client time to process information is important. It also may help to use alternative methods of expression, such as drawing, to assist the client in sharing her understanding. Educational Support (IDEA and FAPE) The Individuals With Disabilities Education Act (IDEA) entitles every child to a free and appropriate public education (FAPE) in the least restrictive environment. Counselors in treatment centers need to consult with the client s school regarding any provisions in his or her individualized education plan (IEP). These provisions need to be followed during treatment to ensure that the client s educational needs are met. In the outpatient setting and during aftercare, it is a good idea for the counselor to consult with the school counselor or case manager regarding educational needs. Areas such as social skills may be addressed in the IEP and would be important to address during treatment and as part of aftercare. It also helps to be aware of any academic issues that may affect the client s treatment, such as stress about academic performance or difficulties with classmates. The Math Interactive Learning Experience (MILE) study and program has proved that instruction tailored to a student s specific needs can make substantial improvements in learning for children with FASD. A program which included learning readiness, parent empowerment, and intense one-on-one instructions, the MILE program showed that both math skills and behavior of alcohol-affected children were improved significantly by interventions designed to meet their specific learning and behavior needs. 29 Transitional Planning and Case Management At some point, the adolescent with FASD will leave the treatment center or transition from therapy and require ongoing support in the community. Counselors need to be familiar with available resources in the community, such as psychiatrists, social workers, and physicians. 22

23 Counselors can include referrals to these resources in the transition plan and work with case managers at their facility as appropriate. It is also important to consider the transition to school and to work with school administrators and the school counselor to determine how best to address the adolescent s ongoing needs within the school setting. It also may be necessary to consult an advocate or legal representative if the youth has had any legal problems related to substance abuse. Adolescents with FASD are easily led and can get pulled into illegal activity or manipulated into relapses. Providing comprehensive services that will address all their needs can help adolescents with co-occurring FASD and alcohol problems safely transition from treatment into the community. Children Environment mitigates effects Visible changes in the brain and behaviors of animals exposed to alcohol have been documented. Exercise Reduced learning deficits Improved hippocampal functioning May enhance plasticity & behavioral performance Thomas, J Some clients will have children with FASD. The stress of caring for children with these disorders, coupled with the shame and guilt that often accompany the diagnosis, can overwhelm many women. The counselor can provide helpful guidance in caring for children with FASD as part of the woman s recovery process. Many of these strategies will help provide structure and routine, which can aid in the woman s recovery by avoiding the chaos that can trigger relapses. 23

24 Strategies for Helping Children with FASD Modify child s s environment: Structure * Routine * Repetition * Support Use literal, concrete language and check for understanding. Do not isolate the child. Potential child abuse Ideas the counselor can share include: Provide a structured environment for the child. Keep the child s room neat, with a place for everything. Always put things back in the same place. Minimize decorations, toys, and other items that can create sensory overload or distractions. Avoid sensory triggers, such as crowded malls or museums, that can cause sensory overload. Have a routine. Create a daily schedule and review it with the child. Use drawings or photos to illustrate where you ll be going and what you ll be doing. If you need to deviate from the routine, give the child plenty of notice. Give one direction at a time and wait until the child completes the task before moving on. Repeat rules and routines often. Prepare the child for events. For example, tell the child that you ll be leaving for the store in 15 minutes. Then remind the child 5 minutes later and 5 minutes after that. Tell the child what will happen at the store and what the rules are (e.g., walk, don t run). Role play different situations. Practice going to the store or eating at a restaurant. Show the child appropriate behavior. Use literal language. Children with FASD do not understand slang or metaphors. For example, if you say, I m sorry, I got carried away, they might reply, No, you re still here. Do not isolate the child. Sending persons with FASD to their room to think about what they have done will most often only increase a sense of isolation. If the child makes a mistake, talk about why the behavior is unacceptable. Focus on teaching and guiding, rather than punishing. Practice and teach basic social skills in multiple ways. The Bruin Buddies Project, conducted at the University of California at Los Angeles, showed significant improvements in social interactions of children with FASD as a result of rehearsal, modeling, practice, instructions and homework

25 Adnams et al. conducted an interesting pilot study with language and literacy interventions, such as training in manipulation of phonemes and reading real words. 31 More tips can be found in FASD The Basics at Medical and Mental Health Assessments A clinical evaluation to diagnose FASD is critical. If a counselor suspects that a client s child has FASD, it is important to assist the client in obtaining a diagnostic workup. You may need to refer the client to a diagnostic clinic or to various professionals (e.g., neuropsychologist, occupational therapist). Ongoing assessments are needed in children who already have a diagnosis of FASD to monitor progress and assist parents in identifying issues needing intervention. The counselor may want to provide information on the types of assessments suggested (e.g., medication management, hearing, speech, occupational therapy, physical therapy). In addition, the counselor may want to consult with the Division of Developmental Disabilities of the state regarding services the family can obtain for the child. Educational Support Parents may not be aware of the laws regarding education of children with disabilities and may feel overwhelmed. They may be having problems dealing with their child s school and wonder what to do. The counselor can help by informing the client about IDEA and FAPE requirements and helping outline possible interventions to suggest to the school. By supporting the client in her attempts to effectively parent, the counselor plays an important role in relieving stress and fostering recovery. Case Management The addiction professional can help families cope with FASD during the recovery process by building a protective environment for clients and their children. This may include helping them obtain safe, stable housing, assisting with daily living skills such as bill paying and food shopping, and overseeing home situations. It is also important to establish a network of community service providers who will be available for aftercare to promote ongoing recovery and avoid relapse. 12 Interacting with social and educational service agencies can be overwhelming and confusing, and each agency typically uses a specialized vocabulary (i.e., jargon) that is difficult for nonspecialists to understand. It is important to help the client identify available services, determine which ones are effective for their children, and understand how to work productively with service providers. 18 Issues Related to Professional Values and Ethics Working with clients with FASD can raise many issues. The addiction professional might resent being stuck with such challenging clients. He or she might harbor negative attitudes toward women who drink while pregnant. The client with FASD can trigger feelings of guilt and shame in a counselor who drank while pregnant or has a child with FASD. 25

26 Understanding how to cope with clients with FASD can help the addiction professional serve such clients more effectively. Malbin and Schmucker offer suggestions 2,4 : Be good to yourself. Even with a realistic plan and an established routine, nothing is perfect. Things change and setbacks occur. By expecting bumps in the road of a person s journey through life, we can learn to not take these dips personally. By offering the person with FASD nonjudgmental and informed support, we offer hope. Expect that the person with FASD cannot generalize information or skills from one setting to another situation. Prepare and practice multiple scenarios with the person. Be patient and avoid looking bored going over the same information multiple times. Due to their memory difficulties, clients with FASD will not always remember what supports or programs we have developed with them or what their goals might be. This is where use of a written journal or goal sheets come in handy to remind people how far they ve come and where they are headed. Keep a positive attitude and focus on what the person has accomplished, rather than on goals yet to be met. Expect to repeat things many times in many ways. Clients with FASD may ask the same question every time you see them. Remember that they have cognitive deficits. They are not asking just to test your patience. Realize there is no set approach and what works one time may not always work for the person. As part of her dysfunction, the person may experience things differently day to day or even hour to hour and variability is the norm for her. Keep an open mind and be flexible. Avoid statements such as But it worked last time. Reframe your perception of the person s behavior. He or she is not trying to make you mad or cause trouble. He or she has brain damage and may have a history of abuse or other family dysfunction. You need to explore behaviors, stay patient, and tolerate ambiguity. Malbin describes it as challenging to unravel the acting out behaviors from the many layers of family and personal dysfunction the person carries. 2 o Understand that FASD involves permanent brain changes. o The client is not refusing to do things. He or she can t do them or does not understand what you are asking him or er to do o Clients are not lying. They are trying to fill in gaps in memory with their own information. o Perseverating behaviors are an attempt to control or make sense of their own world. o Transition and change are very difficult for the person with FASD. Acting out when things change may be a reaction to fear of transitions or difficulty processing change. Know yourself and take the time to reflect on your comfort level in dealing with issues surrounding FASE. Gain knowledge if needed. Gain comfort in tackling the subject by role playing with colleagues. Know your limits and get outside help or referrals as required. Plan to connect to appropriate community resources. 26