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Latest Treatment Strategies for Children

and Adults with FASDMarch 22, 2013

University of MissouriDr. Leigh E. Tenkku

MRFASTC Project Director

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Prologue

• An individual’s place, and success, in society is almost entirely determined by neurological functioning.

• A neurologically injured child is unable to meet the expectations of parents, family, peers, school, career and can endure a lifetime of failures. The largest cause of neurological damage in children is prenatal exposure to alcohol. These children grow up to become adults. Often the neurological damage goes undiagnosed, but not unpunished.

Faslink website

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Overview

• Treatment across the life spanBy age groupInfancy through AdulthoodFamily issues

• Lifelong support services and resources

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Lifespan View of FASD

• Much of what we know is anecdotal

• “Behavioral phenotype”: development progresses somewhat predictably

• IQ may not predict functional performance

• Prevention of secondary disabilities is paramount

• Treatment implications follow

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Infancy and Early Childhood

• Poor habituation

• Irritability in infancy

• Poor visual focus

• Sleep difficulties

• Mild developmental delays

• Distractibility and hyperactivity

• Difficulty adapting to change

• Difficulty following directions

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MiddleChildhood

• ADHD symptoms interferewith learning

• Academic failure/school trouble

• Concrete thinking may frustrate relationships

• Gullible

• Difficulty predicting and/or understanding consequences

• Difficulty with memory may bring negative feedback to child

• Poor comprehension of social rules/expectations

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Adolescence

• Poor adaptive functioning

• Confabulation—lying or stealing

often without malice, result of

concrete thinking

• Faulty logic

• Low self-image and motivation

• Academic achievement lower than expected

• Inappropriate sexual behavior

Adolescence

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Adulthood

• Not as much known about this

• May seem more capable than they really

are

• Development may continue to be uneven

• Secondary disabilities may predominate

• Natural support network may fall away

• Available services may be crisis oriented, not prevention or support based

• Employment failure likely

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Typical Difficulties ForPersons With an FASD

Sensory: May be overly sensitive to bright lights, certain clothing, tastes and textures in food, loud sounds, etc.

Physical: Have problems with balance and motor coordination (may seem “clumsy”).

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Typical Difficulties ForPersons With an FASD

Information Processing:

• Do not complete tasks or chores and may appear to be oppositional

• Have trouble determining what to do in a given situation

• Do not ask questions because they want to fit in

• Have trouble with changes in tasks and routines

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Typical Difficulties ForPersons With an FASD

• Have trouble following multiple directions

• Say they understand when they do not

• Have verbal expressive skills that often exceed their verbal receptive abilities

• Cannot operationalize what they’ve memorized (e.g., multiplication tables)

• Misinterpret others’ words, actions, or body movements

How do I ‘straighten’ my room?

Information Processing:

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Typical Difficulties ForPersons With an FASD

• Tend not to learn from mistakes or natural consequences

• Frequently do not respond to reward systems (points, levels, stickers, etc.)

• Have difficulty entertaining themselves

• Naïve, gullible (e.g., may walk off with a stranger)

• Struggle with abstract concepts (e.g., time, space, money, etc.)

I’m late! I’m late!

Executive Function and Decision-Making:• Repeatedly

break the rules

• Give in to peer pressure

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Typical Difficulties ForPersons With an FASD

Self-Esteem and Personal Issues:

• Function unevenly in school, work, and development – Often feel “stupid” or like a failure

• Are seen as lazy, uncooperative, and unmotivated –Have often been told they’re not trying hard enough

• May have hygiene problems

• Are aware that they’re “different” from others

• Often grow up living in multiple homes and experience multiple losses

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Potential Secondary Disabilities

• Mental health problems (over 90%)

• Trouble with the law (60%)

• Sexual misconduct (49%)

• Disrupted school experiences (60%)

• Problems with alcohol and/or drug use (35%)

• Confinement (50%)

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Universal Protective Factors: Environmental

• Living in a stable and nurturing home (particularly ages 8-12)

• Being diagnosed before age 6

• Not being a victim of violence

• Not having frequent changes of household

• Having received developmental disabilities services

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Universal Protective Factors: Intrinsic

• Having a diagnosis of FAS (rather than other effects of alcohol exposure)

• IQ score below 70

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Preventing Secondary Disabilities

• Diagnosis as intervention

• Protective factors as a guide

• Family education—convey message of hope and critical need for support

• Increased supervision throughout adolescence and early adulthood

• Proactive preparation for adulthood

• Plan for supported living and employment

• Proactive mental health services

• Community education

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Behavioral and Educational Interventions

• Strategies traditionally gleaned from other disabilities and practical wisdom gained by parents and clinicians.

• In general, helpful interventions include: Stable home environment Working with educational staff or therapists and

working with social services (e.g., foster care) to determine individualized treatment plans

• If developmental delay is suspected in a child under age three, refer to early intervention program.

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Reframing

From interpreting behaviors as

To understanding the individual

Won’t Can’t

Bad Frustrated, challenged

Lazy Tried hard

Lies Confabulates, fills in

Doesn’t try Exhausted or can’t start

Mean Defensive, hurt, abused

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From To

Fussy, Demanding Oversensitive

Resisting Doesn’t get it

Trying to make me mad

Can’t remember

Trying to get attention

Needing contact and support

Acting younger Being younger

Reframing

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“Age–Appropriate Behavior”

Chronological age w/expectations

• Age 5 Sit still for 20 min

• Age 10 Know right from wrong

• Age 18 Be independent

Developmental age expectations

• Age 5 going on 2 Sit still for 5-10

• 10 going on 6 Developing sense of fairness

• Age 18 going on 10 Needs structure and guidance

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Spectrum of Capacities

• Expressive Language 20

• Reading: decoding 16

• Reading comprehension 6

• Money and time concepts 8

• Emotional maturity 6

• Physical maturity 18

• Social skills 7

• Living skills 11

Skill/CharacteristicDevelopmental Age

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Set appropriate expectations that are:

• Based upon cognitive functioning

• Developmentally appropriate

• Understood by the child

• Attainable

FASD Toolbox for Teachers, www.do2learn.com; Trying Differently: A Guide for Daily Living and Working with FASDs and Other Brain Differences, Fetal Alcohol Syndrome Society Yukon, 2005.

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Safeguarding

• Think “younger”

• Think “more supervision”

• Make no assumptions about understanding

• Watch for vulnerability

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8 Magic Keys: Guidelines for working with

students with FAS

• Concrete – Speak in concrete terms; Avoid using words with double meanings

• Consistency – Students with FAS do best in environments with few changes. This includes language; Use the same key words each time.

• Repetition – Teach and re-teach and re-teach.

• Routine – When students with FAS know what to expect, they experience less anxiety and are better prepared to learn

FAS Alaska, by Deb Evenson & Jan Lutke, 1997

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8 Magic Keys (cont’d)

•Simplicity – Keep it short and sweet

•Specific – Say EXACTLY what you mean

•Structure – An environment with structure and boundaries helps keep students with FAS on track; It’s “the glue.”

•Supervision – Provide constant supervision to model and help develop appropriate behavior

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“Trying Differently…”

Things that don’t work:

• star charts

• time-outs

• taking things away

• bribes

• rewards

• missing important events as punishment

• reducing structure and support over time

Trying Differently: A Guide for Daily Living and Working with FASDs and Other Brain Differences, Fetal Alcohol Syndrome Society Yukon, 2005.

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Words to Use:• “Show Me”• “Get your body in control” (instead of

“calm down”)• “Let’s start here” (then demonstrate)• “It’s time to go when…” (provide concrete

example)• “Now”• “Focus”

“Trying Differently…”

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• Give specific, positive feedback immediately

• Minimize materials in a lesson – too much on a worksheet can over-stimulate

• Encourage the use of “fidget toys”

• Reinforce routine and structure with visuals• Use color coding for different subjects• Clearly define boundaries with color tape• When lining up use tape to mark space or paper footprints to

mark how far apart to stand• Label areas and materials with words and visuals at eye level

• Make accommodations where needed

“Trying Differently…”Key Strategies

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Resources for Educators

• Do 2 Learn: http://do2learn.com/disabilities/FASDtoolbox/index.htm

• FAS Alaska: 8 Magic Keys http://www.fasalaska.com/8keys.html

• NOFAS: http://www.nofas.org

• Reach to Teach: Educating Elementary and Middle School Children with Fetal Alcohol Spectrum Disorders, DHHS Pub. No. SMA-4222. Rockville, MD: Center for Substance Abuse Prevention, Substance Abuse and Mental Health Services Administration, 2007.

• Fetal Alcohol Syndrome Society Yukon (FASSY): “Trying Differently: A Guide for Daily Living and Working with FASDs and Other Brain Differences” (e-mail fascap@klondiker.com)

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Evidence-based interventions for children with FASDs

• Project Bruin Buddies – social skills training

• Georgia Math Interactive Learning Experience – math knowledge and skills training

• ALERT program – behavior regulation and executive functioning

• Parent therapy program – improve parent effectiveness and reduce behavior problems

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Project Bruin Buddies

Parent Assisted Child Friendship Training• Compared a Child Friendship Training (CFT) group to a

Deferred Treatment Control (DTC) group

• Parents and children attended 12 - 90 minute sessions over 12 weeks

Outcomes• Children in the CFT group showed improved social skills

and fewer problem behaviors than children in the DTC group

• Social skills gains were maintained over a 3-month follow up

Ed Riley Presentation Online

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Georgia Math Interactive Learning

• www.Do2learn.com

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University of Chicago -

• Neurocognitive habilitation program focused on improving child’s executive functioning

• Focused on self-regulation

• Car engine metaphor: brain is a like a car engine and can make their body run in high, low or just-right gear

• Intervention included 12 weekly 75-min group therapy sessions with parents participating in a parent education group

• Results indicated significant improvement in executive functioning skills of children in the program

• www.alertprogram.com

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Families Moving Forward

http://depts.washington.edu/fmffasd/

Tab: Publications and Links

Slide 26

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New pilot interventions for youth and young adults with FAS/FASDs

• UCLA – Substance Abuse Intervention for youth and young adults with FASDs

• St. Louis – Partners for Success Intervention for Youth and Young Adults with FASDs

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St. Louis Project

• Recruit 100 youth and young adults ages 16-25 and their families

• Diagnosis of FASDs provided

• Designing the intervention (Year 1)

• Testing the intervention (Year 2)

• Test for sustainability of the intervention (Year 3)

• Analyze results (Year 3)

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Partners for Success Intervention

• In-home therapy visit 2xs a month for individual youth and their families

• Mentor “coach” for the young person

• Parent education support session

• Ongoing support for both family and individual

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FAMILY ISSUES

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Antecedents of Family Stress: Child Characteristics

• May “look good”-others may not understand challenges and fail to support family

• Difficulty learning from experience-need to endure frustrating “re-learning”

• Distractibility/impulsivity-need for constant vigilance and supervision

• Social difficulties-may lead to isolation of the entire family

• Sleep disturbances-disrupted sleep for parent

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Antecedents of Family Stress: Parent Issues

• Alcohol use and parenting child with FASD are a poor fit

• Prior parenting strategies may not work—leading to frustration and blame

• Exhaustion plays role in parental decision-making

• Relationships with spouse and other children may deteriorate

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Antecedents of Family Stress: Community Issues

• Lack of knowledgeable medical providers and school personnel—may lead to delayed diagnosis and inappropriate interventions

• Lack of needed resources Child care programs Small classroom sizes Appropriate after-school programs Financial assistance Supervised living and employment arrangements

• Lack of appropriate criminal justice options

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FAMILY INTERVENTIONS

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Family Stress Intervention: Respite Care

• Short-term, temporary care of children with disabilities

• Provided in the home or in a variety of out of home settings

• Helps families avoid burnout, stress, etc.

• See resource list for National Respite Locator Service information

• If no program available, suggest creating an informal network of parents for respite care

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Parent Stress Intervention: Support Groups

• Provide a safe, non-judgmental and confidential outlet for sharing

• Help parents cope and develop positive attitudes about the future

• Allow members to help each other through sharing of knowledge and experience

• Offer resources and information not easily available outside the group

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Family Stress Intervention: Therapy

• Family therapy Help modulate stress Assist with relationship issues

• Behavior therapy “Talk” therapy not appropriate Assist family with providing structure and

appropriate redirection and consequences Assist family in planning environmental

modifications

• Finding a therapist—utilize professional with developmental disability experience

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Family Intervention Strategies

• A combination of behavioral and environmental modifications may produce the best results

• Early and intensive alcohol and substance abuse education for the child

• Advise the family to model alcohol-free living

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Family Education

• Advocacy education/resources

• Developmental progression and prevention of secondary conditionsIncreased supervisionSex education

• Planning for adulthoodSupervision & FinancialEmployment & Housing

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Other Types of Approaches to Treatment: Complementary Alternative Medicine

• Biofeedback

• Recreational therapy

• Relaxation therapy

• Creative art therapy

• Yoga/exercise

• Vitamins/herbal treatment

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Parental Strategies

• “Strength-based parenting”—search for, affirm, and build on child’s strengths

• “Reframe” negative behaviors

• Use concrete language

• Use repetition and build routines

• Maintain high level of supervision, despite chronological age

• Educate all family members on FASD issues

• School and community advocacy

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Disability Services

• Search for appropriate services never ends!

• Some individuals may be eligible for SSI

• Early intervention and childhood therapy servicesOccupational, physical, speech therapyFamily education and support, respite care

• Services through state systems of careSupported livingSupported employmentSocial and leisure programs

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Special Topics: Alcohol Addiction and Parenting

• FASD and parental addiction a dangerous mix• Parent characteristics & alcohol use:

Impaired response timeImpaired judgmentIrritability

• Life stressorsMoney worriesJob stressInterpersonal stress

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Special Topics: Adults with FASD as Parents

• Impulsivity and poor judgment—poor fit with care of child

• Vulnerable to model ineffective parenting practices

• High risk for child neglect and abuse

• Will need extensive support Behavior management Home management

• Multi-generational alcohol use during pregnancy may occur

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Epilogue

• Our job is to help these young people to be as successful as possible…..we just have to find the right tools to give them, their families and their environments