Adulthood

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Fetal alcohol syndrome is not just a childhood disorder; there is a predictable long term progression of the disorder into adulthood, in which maladaptive behaviors present the greatest challenge to management.
    Ann Streissguth, Journal of the American Medical Association. 1991

There are many life issues faced by adults with FASD. With older individuals affected by prenatal alcohol exposure, treatment is usually multimodal, with many different types of treatments necessary and applied as needed. At least some adults with FASD need an advocate who can “translate” the affected individual’s actions to the world—and help the affected individual understand his or her own actions (and how others respond). An interested and caring advocate helps an individual with FASD negotiate life tasks and learn necessary skills.

There is little research that has tested treatments for older individuals with FASD. The best information comes from the experience of parents and the wisdom of clinicians who have worked to help older individuals with FASD to become successful. The issues of appropriate adult advocacy, intimacy, parenting, living, and work arrangement—as well as direct treatment for older individuals with FASD—are complicated.

Because of the brain damage caused by prenatal exposure to alcohol, many affected individuals have such difficulty controlling their impulses and have such poor judgment that they will require close supervision or at least frequent monitoring well past their teen years. Parents must come to terms with the possibility of facing a period of never-ending adolescence.  The “terrible teens” could last into the “terrible twenties.” 

An 18 year old with an FASD may:
   Talk like a 20 year old
   Look like an 18 year old
   Read like a 16 year old
   Comprehend like a 6 year old
   Have the social skills of a 7 year old
   Have the emotional maturity of a 6 year old

However, many parents of young adults with FASD observe that, sometime before their child reaches age 30, the young adult affected with FASD seems to calm down emotionally and socially.  Their child's cognitive abilities may not improve with age, but their emotional behavior and social skills appear to become tolerable. Finally, their son or daughter can engage in social and employment relationships with (limited) success. 

The ultimate success of an adult affected by FASD will depend on continued guidance and close monitoring that might require a one-on-one mentor or a job coach, and the presence of an “external brain” in social situations.

Needs of Adults with an FASD

Rob Wybrecht, an adult with FASD who advocates for himself and others, has shared the following recommendations for supporting individuals affected by prenatal alcohol exposure:
  • Ongoing love and support from parents and extended family
  • Knowledge that they are truly loved and always respected
  • Person Centered Planning/Adult Wrap Around
  • Ongoing experiences in the larger community
  • Job coaching and job support
  • Payee and/or assistance with money SSI and/or SSDI
  • Supervised “independent” housing
  • Safe supervised social events
  • Life coach – therapist who is there for the long term and listens carefully
  • Concrete classes on health, nutrition, safety
  • Regular physical recreation
  • Substance abuse treatment with therapists who have knowledge of and experience with individuals with an FASD
  • Criminal Justice system that understands that brain differences impact their understanding, memory and behavior. Jail and prison will not change the behaviors, but structure, support, and supervision will.
  • If living in a group home is not an option, shared living with a physically handicapped but mentally capable person is sometimes a good fit
In addition, Mr. Wybrecht suggests that individuals with FASD use a number of common and easily available objects to help make their lives easier. These items include:
  • Vibrating watch, organizer, or cell phone
  • Clock that shows passage of time, visually
  • Foam earplugs
  • Big clear jug for car/house keys, wallet, watch, money, flashlight, receipts
  • Books listing jobs for the day
  • Laminated layout of the job space (for example, for a restaurant, a salad bar layout)
  • Wallet cards describing the individual's limitations to show, if stopped by police
Finally, Mr. Wybrecht notes that it  "takes ten persons on the team to assist one individual with an FASD." Team members he identifies include:
  • Trust Fund  Payee   (Family or Professional Manager); Disability attorney can help with the Trust Fund
  • Person Centered Planning/Wrap Around
  • Family Members      
  • Clergy
  • Employer
  • Physician
  • Vocational Rehabilitation
  • Mental Health Therapist           
  • Group Home Manager
  • Case Manager        
  • Recreation Therapist
  • Probation Officer

Secondary Conditions and FASD in Adults

In adulthood, a significant percentage of persons affected by prenatal alcohol exposure engage in "high risk situations", such as getting into trouble with the law, exhibiting inappropriate sexual behavior, having clinical depression, thinking about or actually attempting suicide, and inability to properly care for themselves and/or their own children.

Streissguth et al. published a frequently cited study in the late 1990s with many dark and discouraging findings. These include the following:

  • Most adults with FASD have clinical depression. The study revealed that 23% of the adults had attempted suicide, and 43% had threatened to commit suicide.
  • Disrupted School Experience (suspension or expulsion or drop out). By the time students with FASD reach adulthood, the rate of disrupted school experience peaks at 70%.  Common school problems include: not paying attention; incomplete homework; can't get along with peers; disruptive in class; disobeying school rules; talking back to the teacher; fighting; and truancy.
  • Trouble with the Law (involvement with police, charged or convicted of crime), was experienced by about 60% of those age 12 and over.  The most common crimes committed were crimes against persons (theft, burglary, assault, murder, domestic violence, child molestation, running away), followed by property damage; possession/selling; sexual assault; and vehicular crimes.
  • Confinement (inpatient treatment for mental health, alcohol/drug problems, or incarceration for crime) Over 40% of adults with FASD had been incarcerated; about 30% of adults with FASD were confined to a mental institution; and about 20% had been confined for substance abuse treatment.
  • Inappropriate Sexual Behavior was reported in 65% of adult males with FASD.  This includes only sexual behaviors that had been repeatedly problematic or for which the individual had been incarcerated or treated.  It is thought that the actual incidence of inappropriate sexual behavior is much higher, and not always reported by the individual or the family due to embarrassment or fear of being reported to authorities.  Problem sexual behaviors most common with FASD include: sexual advances; sexual touching; promiscuity; exposure; compulsions; voyeurism; masturbation in public; incest; sex with animals; and obscene phone calls.
  • Alcohol/Drug Problems Of the adults with FASD, 53% of males and 70% of females experienced substance abuse problems.  This is more than five times that of the general population.
  • Dependent Living was the situation for about 80% of adults with FASD.
  • Problems with Employment were indicated in 80% of adults with FASD.

Useful Links

A Standard of Care for Adults - The Dysfunctional Years
Tips for Adults With FASD
Supporting Success for Adults with FASD
Visuals for Teaching Tasks and Concepts Although posted to an autism childhood education site, some of these images may be helpful for adults with FASD to organize tasks more effectively.
An Adult Reflects on His Life With FASD
FASD Challenges in the Adult World
How You Can Help Adults with FASD Manage Money
Disability Benefits
Criminal Justice
Job Training / Employment
Housing / Independent Living
Anger and Violence
Drugs and Alcohol
Perseveration
Sexuality
Marriage and Relationships
Parenting
Tips and Tactics
Travels in Circles A story in the Native American tradition of a young puffin with FASD who is left on his own. Focus is on ages 18 to 22.
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