Fetal Alcohol Spectrum Disorders Fetal Alcohol Spectrum Disorders Approaches, Resources and Interventions

The FASD Iceberg

• FAS – Fetal Alcohol  SSyndrome  d • PFAS –Partial Fetal Alcohol  Syndrome • ARND – Alcohol Related  Neuro Developmental  Disorder  • ARBD – Alcohol related  b t e ects birth Defects 

Recognition of the Issue Recognition of the Issue • Medical Literature Medical Literature – Effects of prenatal alcohol exposure first described  in the medical literature by Paul Lemoine of in the medical literature by Paul Lemoine of  France (1968) – Drs. Jones and Smith introduced FAS in the United  Drs. Jones and Smith introduced FAS in the United States (1973)

Scope of the Issue Scope of the Issue • Prenatal Prenatal exposure to alcohol is harmful to the  exposure to alcohol is harmful to the fetus. Can result in: – Physical malformations Physical malformations – Growth problems – Abnormal functioning of the central nervous  Abnormal functioning of the central nervous system (CNS)

Scope of the Issue Scope of the Issue • Alcohol Alcohol is a teratogen: a substance that causes  is a teratogen: a substance that causes developmental transformations • Alcohol use can alter brain structure  Alcohol use can alter brain structure • Alcohol use can alter brain chemistry

Effects of Alcohol on the Developing  Embryo and Fetus b d • No No known known safe amount of alcohol during  safe amount of alcohol during pregnancy • No safe type of alcohol No safe type of alcohol • No safe time to drink during pregnancy • Alcohol interacts with the developing central  nervous system through multiple actions

Diagnosis  Diagnosis • Documented Documented presence of discriminating facial  presence of discriminating facial characteristics • Documented growth deficits  Documented growth deficits • Documented central nervous system  abnormalities  b li i

Disabilities Associated with Alcohol Disabilities Associated with Alcohol • 6 per 1,000 live births  6 per 1 000 live births (HRSA, 2005) • 2,000 – 2 000 12,000 of the projected 4 million  2 000 f h j d illi children born each year are likely to have FASD (Plumridge, Bennett, Dinno & Branson, 1993) • 1 out of every 1,000 born with full‐blown FAS y , (fasdcenter.samhsa 2006) 

Prevalence Figures Prevalence Figures  • Institute Institute of Medicine 1996  of Medicine 1996 – children have not  children have not received correct diagnosis or treatment  • Much larger population than those diagnosed  Much larger population than those diagnosed with Down’s syndrome 1 per 2,000 live births  • Autism ( 3 per 1,000 live births)   A i (3 1 000 li bi h ) • CDC (2006)

Prevalence by Race/Ethnicity Prevalence by Race/Ethnicity Race/Ethnicity

FAS cases N (%)

Prevalence per 10,000

Black

710 (47.0)

8.1

White

537 (35.6)

1.1

Native American Native American

77 (5 1) 77 (5.1)

31 0 31.0

Hispanic

45 (3.0)

1.2

Asian

3 (0.2))

0.3

Other

137 (9.1)

1.7

Overall 

1,509 (100.0)

2.1

Why Is This Important Why Is This Important • Prenatal Prenatal alcohol exposure puts stress on brain  alcohol exposure puts stress on brain development and function • Affects multiple developmental domains  Affects multiple developmental domains • Affects child’s ability to successfully navigate  social and academic environments  i l d d i i

Infants • Low Low birth weight,  birth weight, irritability, sensitivity to  light, noises and touch;  poor sucking, slow  development; poor  sleep‐wake cycles;  l k l increased ear infections 

Toddlers • Poor memory Poor memory  capability;hyperactivity; lack of fear; no sense of  boundaries; need for  excessive physical  contact  t t

Grade School Years Grade School Years • Short attention span poor coordination Short attention span, poor coordination,  difficulty with both fine and gross motor skills 

Older Children and Teenagers Older Children and Teenagers • Trouble Trouble keeping up in  keeping up in school • Low self esteem from  recognizing they are  different from their  peers 

• Poor Poor impulse control,  impulse control, cannot distinguish  between public and  private behaviors, must  be reminded on  t d il concepts on a daily  basis 

Adolescents and Teens Adolescents and Teens • Prone to mood disorders, anxiety, depression , y, p • Impulsivity and poor judgment – leads to difficulty  achieving independence • Trouble fitting in with others – leads to low self‐ esteem • At higher risk for substance abuse At hi h i k f bt b • “Hidden disability” – gives the impression of being  more capable than they really are which puts more capable than they really are which puts  individuals at risk for mental illnesses and secondary  disabilities

Adults • Might Might present themselves as more capable  present themselves as more capable than they are • Difficulty with abstract thinking and concepts  Difficulty with abstract thinking and concepts • High risk for victimization • Benefit from case management and need  ongoing supports

Overlapping Behavioral Characteristics Mi Minnesota Children’s Mental Health Agency‐2010  t Child ’ M t l H lth A 2010 Characteristic 

FASD 

ADD/ADHD

Often does not  x follow through  on instruction

x

x

x

Manages time Manages time x poorly /lack of  comprehension  of time

x

Often has  difficulty  organizing organizing  tasks and  activities

Often loses  temper

x

Autism 

Poverty  x

x

x

x

Families and Caregivers Families and Caregivers • All All families with an individual with an FASD  families with an individual with an FASD need counseling and resources. • Birth families might need to be assessed for  Birth families might need to be assessed for addiction problems and might need to be  referred for treatment. • A stable home environment is crucial. • Families living with FASDs can benefit from  Families living with FASDs can benefit from instruction on specific techniques shown to be  helpful.

Providers and Approaches to  Treatment for FASDs f • Medical, mental health, and therapeutic  considerations • Psychopharmacological considerations • Behavioral and educational interventions Behavioral and educational interventions • Alternative approaches

Medical, Mental Health, and  Therapeutic Considerations h d • Particular concerns must be  monitored and addressed  through a variety of  healthcare providers: – – – – – – –

Pediatrician Dysmorphologist Otolaryngologist y g g Audiologist Immunologist Primary care provider Primary care provider Addiction treatment services

– Neurologist – Child psychiatrist and  psychologist, school  psychologist, behavior psychologist, behavior  management specialist – Opthalmologist – Plastic surgeon Pl ti – Endocrinologist – Gast Gastroenterologist oe te o og st – Nutritionist

Psychopharmacological Considerations Psychopharmacological Considerations • There There are no approved medications specifically for  are no approved medications specifically for the treatment of FASDs, however several classes of  medications are prescribed routinely to address  common symptoms: – – – – –

Stimulant medications Antidepressants Neuroleptics Anti anxiety drugs Anti‐anxiety drugs Drug “cocktails”

Behavioral and Educational  Interventions • Strategies specific to individuals with FASDs have  g p traditionally been gleaned from other disabilities and  practical wisdom gained by parents and clinicians. • In general, helpful interventions include: 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 with social services (e.g., foster care) to determine  individualized treatment plans

• If developmental delay is present or suspected in a  child under age three, refer to early intervention  hild d th f t l i t ti program.

Behavioral and Educational Interventions  ( (continued) i d) • Educational interventions: – Special education placement – 501 plans – Individualized Education Plan (IEP) ( )

• Evidence‐based interventions for children with FASDs: – Project Bruin Buddies – social skills training – Georgia Math Interactive Learning Experience – Georgia Math Interactive Learning Experience – math knowledge and  math knowledge and skills training – ALERT program – behavior regulation and executive functioning – Parent therapy program  Parent therapy program – improve parent effectiveness and reduce  improve parent effectiveness and reduce behavior problems

Alternative Approaches Alternative Approaches • Non‐tested Non tested therapies for individuals with  therapies for individuals with FASDs: – Biofeedback – Auditory training – Relaxation therapy/visual imagery/meditation – Creative art therapy/yoga/exercise – Accupuncture/accupressure/massage/Reiki/  energy healing – Vitamins/herbal/homeopathy

Family Support Services and Resources Family Support Services and Resources • • • •

Parenting strategies Disability services Disability services Legal system R Resources

Parenting Strategies Parenting Strategies • Keys to working successfully with children with  y g y FASDs: – – – – –

Structure Consistency Variety Brevity P it Persistence and repetition d titi

• Families might need counseling, therapy, and/or  p parenting classes. g • Birth families might need intervention and  encouragement to pursue treatment for their  addiction. addiction

Disability Services Disability Services • Individuals with an FASDs might qualify for: Individuals with an FASDs might qualify for: – Supported employment/job coach – Transportation – Assisted living – Respite care R it – Social Security disability benefits – Supplemental Security Income (SSI) S l lS i I (SSI)

Treatments and Therapies for Persons  with FASDs h • Early intervention is critical Early intervention is critical • Protective factors include: – Stable and nurturing home environment Stable and nurturing home environment – Early diagnosis (before age 6) – Absence of exposure to violence Absence of exposure to violence – Few changes in caretaking placements – Eligibility for social and educational services g y

• Interdisciplinary team of professionals is  crucial

Strategies for Living Strategies for Living  • • • • • • •

Consistent routines Consistent routines Limited stimulation C Concrete language and examples  l d l Multi‐sensory (visual, auditory and tactile) Realistic expectations Supportive environments Supportive environments  Supervision

For the SLP For the SLP • Delays Delays in grammar and vocabulary  in grammar and vocabulary comprehension and production  • Less verbal  Less verbal • Minimal conversational skills  • Limited receptive and expressive syntactic  skills  • Delayed semantic skills  Hyter 2007 • Hyter, 2007

Social Cognition Social Cognition • Unable Unable to empathize to empathize • Difficulty anticipating the consequences of  their actions in social situation their actions in social situation  • Lack of development of false belief  understanding (Permer 1991,Silliman et  d di (P 1991 Silli al.,2003,Wellman, 1990) 

Double Jeopardy Double Jeopardy • Coggins Coggins et al. (2007)  et al (2007) • Combination of Prenatal alcohol exposure and  adverse environments adverse environments  • FASD is a heterogeneous group  • Diagnosis of speech and language issues  requires more functional assessment  strategies to describe problems ( gg , (Coggins, Friet,& Morgan, 1988)  , g , )

Framework for Intervention “ “Could if Wanted To”  ld f d ” Power Struggle gg

Increase  Frustration

More Resistive

Enforcing More  R l Rules

Oppositional  Behaviors Increase B h i I

Cycle of Conflict  R i f Reinforced  d

Framework for Intervention “ “Spontaneous Fight or Flight” h l h” Developing  Personal Safety

Reduce Frustration

Affirm Feelings

Provide  Appropriate  Expression

Create Awareness

Alternative  Language/Behavior  Expression

Register Child’s  Limitations

Cycle of Conflict  Cyc e o Co ct Reduced 

Dialogue  Dialogue

THANK YOU  Please contact me with any questions:  Janice M. Wright, MA CCC‐SLP [email protected]