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FASD: A Lifelong Disability. Kathleen Tavenner Mitchell, MHS, LCADC Vice President and Spokesperson National Organization on Fetal Alcohol Syndrome. FAS described in U.S. Literature 36 Years Ago. Why are we still allowing women to receive mixed messages?

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Fasd a lifelong disability
FASD: A Lifelong Disability

Kathleen Tavenner Mitchell, MHS, LCADC

Vice President and Spokesperson

National Organization on Fetal Alcohol Syndrome


Fas described in u s literature 36 years ago
FAS described in U.S. Literature 36 Years Ago

  • Why are we still allowing women to receive mixed messages?

  • Why aren’t medical and allied health professionals being taught about addictions and FASD?

  • Why does NOFAS have to hear the cry’s of young parents, who just did not know?


One families journey living with fasd
One Families Journey Living with FASD

Karli’s

First Birthday Party


1977 karli danny and erin a happy little hippy family
1977Karli, Danny and ErinA Happy Little Hippy Family


14 years old
14 years old

  • Special schools

  • Karli prefers to be with friends with disabilities

  • Great reading skills-poor math skills

  • Still sweet-still pretty!



Karli has fas diagnosis helped us to understand karli we could now focus on what karli could do
Karli has FAS….Diagnosis helped us to understand Karli…we could now focus on what Karli COULD do!


Our family timeline
Our Family Timeline Karli…we could now focus on what Karli COULD do!

  • Years of addiction- exposed 3 more pregnancies to alcohol after Karli.

  • Buried 2 children. (more pain = more drink)

  • Involvement with health clinics: years of misdiagnosis of Karli

  • I am diagnosed with psychiatric disorders, no recognition of addiction; no screening, no intervention

  • 16 years of telling Karli that she was not trying her best

  • Believing that Karli would “grow out of it”

  • Received Diagnosis of FAS for Karli (16 year of age)

  • Acceptance: Advocacy


Karli at 16 Receives Diagnosis of FAS Karli…we could now focus on what Karli COULD do!New house rules:No discussing what Karli cannot do!The focus changed to what Karli could do:

  • Great artist!

  • Friendly to everyone

  • Wants to be helpful

  • Everyone likes Karli

  • 100% pure of heart, Holy

  • Would not hurt another person-ever!

  • Really wants your approval

  • Great with the elderly and individuals with severe handicapping conditions


The scarlet letter
The Scarlet Letter Karli…we could now focus on what Karli COULD do!

Forever Marked as a Bad, Immoral, Unloving, Abusive MOTHER!!Stigma has lifetime affects on all family members


“We are not human beings Karli…we could now focus on what Karli COULD do!

having a spiritual

experience, rather spiritual

beings having a human

experience.”

Pierre Teihard de Chardin


Individuals with fasd make powerful advocates
Individuals with FASD make Powerful Advocates! Karli…we could now focus on what Karli COULD do!


Systems impacted by fasd
Systems Impacted by FASD: Karli…we could now focus on what Karli COULD do!

  • Healthcare, insurance, HMO, MCO

  • Education, (alternative/special ed)

  • Justice, Juvenile Justice (recidivism)

  • Shelters/Housing

  • Mental Health and Addiction (recidivism)

  • SSI and Disability

  • Public Assistance


Comparison of congential effects from alcohol and drugs
COMPARISON OF CONGENTIAL EFFECTS FROM ALCOHOL AND DRUGS Karli…we could now focus on what Karli COULD do!

Adapted from Morris et al,


Common disorders identified with fasd

Autism/Aspergers’s Disorder Karli…we could now focus on what Karli COULD do!

Attention Deficit Hyperactivity Disorder (ADHD)

Borderline Personality Disorder

Attachment-Bonding Disorder

Depression

Learning disability

Oppositional-Defiant Disorder

Post Traumatic Stress Disorder (PTSD)

Receptive-Expressive Language Disorder

Conduct Disorder

Common disorders identified with FASD


Alcohol and sex practices among 16 to 24 year old american women
Alcohol and Sex Practices among 16-to-24-year-old American Women

After drinking alcohol:

  • One in five have had sex that they regretted;

  • One in 10 have been unable to remember if they had sex the night before

  • One in seven women have had unprotected sex and engage in “risk drinking”

    • Birth defects associated with alcohol exposure can occur before a woman knows she is pregnant

    • Half of ALL pregnancies and 85% of teen pregnancies are unplanned

National Clearinghouse for Alcohol and Drug Information


Prevention of fasd assessment of mothers and their children
Prevention of FASD Women Assessment of mothers and their children

  • Screening

  • Intervention

  • Diagnosis

  • Appropriate Treatment


We all need to work together to reduce stigma alcoholism and fas brain based medical diagnosis
We all need to work together to reduce stigma… Women Alcoholism (and FAS) brain-based medical diagnosis

  • Family History: genetic susceptibility

  • Tolerance: The need to drink greater amounts of alcohol in order to “get high.”

  • Physical dependence: Withdrawal symptoms, such as nausea, sweating, shakiness, and anxiety, occur when alcohol use is stopped after a period of heavy drinking

  • Major Organ Damage: liver, heart, kidney, central nervous system, etc.

  • Secondary Symptoms:

    • Craving: A strong need, or compulsion, to drink

    • Loss of control: The inability to limit one’s drinking on any given occasion


Addiction Treatment Prevents FASD. Women

Isn’t it time that the U.S. provide adequate treatment for all women ?


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