Living With FASD
These resources address how individuals with FASD are affected by the condition during different stages in their lives. Click on a heading or link to view the information.
Common Characteristics of Infants with FASD
Some or all of the following may apply to infants with FASD:
- Small
- Often trembling and difficult to sooth, may cry a lot
- Weak sucking reflex
- Little interest in food, feeding difficulties (feeding can take hours)
- Difficulties adjusting to solid food because of disinterest and poor appetite
- Weak muscle tone
- High susceptibility to illness
- Unpredictable sleep patterns/cycles
- High sensitivity to sights, sounds and touch
- Failure to thrive (may continue to lose weight longer than normal after delivery)
- Delayed developmental milestones (for example, walking, talking)
- Problems with emotional bonding
As these infants get older, they generally are more oriented toward people, and display an absence of stranger anxiety. Infants who are alcohol-affected may be difficult to care for. The challenges around sleeping and feeding can be especially problematic and lead to exhaustion for parents and early childhood educators.
Common Characteristics of Preschool Children with FASD
Some or all of the following may apply to preschoolers with FASD:
- Feeding and sleep problems
- Poor motor coordination, and poor fine and gross motor control
- Flitting from one activity/area to another, exhibiting butterfly-like movements
- More interest in people than objects
- Difficulty with social skills
- Overly friendly and indiscriminate with relationships, may seek out affection
- Expressive language may be delayed, or children may be overly talkative (but lack richness of speech, thought or grammar complexity)
- Receptive language often delayed; even if children are talkative, they may not understand much of what is said to them
- Inability to understand danger, often fearless
- Low tolerance for frustration and prone to temper tantrums
- Difficulty following directions or doing as told
- Short attention span
- Easily distracted or hyperactive
- Difficulty with changes and transitions, prefer routines
- Difficulty integrating sensory information, such as sound, touch, light, smells, movement, etc.
During the preschool years, many new problems can emerge, making it increasingly difficult to care for young children with FASD. For example, hyperactivity, risk-taking and poor motor skills can often result in FASD-affected young children children being exposed to danger, or hurting themselves or others. Furthermore, their friendliness and lack of discrimination in relationships can make them vulnerable to abuse.
Useful Links
Sanity Saving Tips for Kids with FASD
FASD Tips for Parents and Caregivers
FASD and the Family
Education / Special Education
Visuals for Teaching Tasks and Concepts Although posted to an autism education site, some of these images may also be useful for helping non-readers with FASD learn tasks and skills for daily living.
What Early Childhood Educators Need to Know about FASD
The Little Fox A story in the Native American tradition of a fox family (mother, father, and their young daughter with FAS). Focus is on ages birth to five.
Common Characteristics of FASD in School-Age Children
Some or all of the following may apply to school-age children with FASD:
- Sleep difficulties
- Arithmetic skills more delayed than reading and writing skills
- Difficulty processing information heard
- Difficulty with comprehension (reading)
- On-going expressive and receptive language delays
- Poor attention span and low impulse control become more obvious due to increased demands within the classroom
- Difficulty keeping up as school demands become increasingly abstract
- Consistent repetition needed to learn a skill or to transfer learning from one situation to another similar one
- On-going sensory integration difficulties, which may lead to behavior changes or challenges
- “Flow through” phenomenon – information is learned, retained for a while, then lost — in need of constant reminders
- Clumsiness related to poor gross motor control
- Difficulties related to poor fine-motor control (for example, poor handwriting, difficulty dressing or grooming self, etc.)
- Personal hygiene problems
- Weak social skills and difficulty with relationships (for example,: problems in sharing, taking turns, cooperating, reading social cues and following rules)
- May show a preference for playing with younger children or with adults
- Poor memory
- Problems with time management due to the lack of a sense of time
- Lack of understanding consequences of behavior
- Inappropriate demands for bodily contact
Most children with FASD have difficulty with school, because it tends to be a very stimulating and complicated place. The demands of the classroom are often very difficult for them to handle.
Positive Characteristics of School-Age Children with FASD
School-age children with FASD are often:
- Friendly, cheerful, loving, affectionate
- Caring, kind, concerned, compassionate
- Gentle, nurturing towards younger children
- Funny, with a great sense of humor
- Persistent and hard working, with a sense of determination
- Curious
- Creative, artistic, musical
- Fair, cooperative
- Interested in animals
- Interested in hands-on activities like gardening and constructing
- Highly verbal, good storytellers
Useful Links
A Standard of Care for Children with FASD
Finding Strengths and Building Self Esteem in Children with FAS/E
FASD and the Family
Visuals for Teaching Tasks and Concepts Although posted to an autism education site, some of these images may also be helpful for parents to teach school-age children with FASD (readers as well as non-readers) to learn tasks, understand concepts, and master skills for daily living at home.
Special FASD Issues
Children with FAS – A Psychological Profile
Tips and Tactics
The Little Mask A story in the Native American tradition of two raccoons with FASD who must fend for themselves after their parents die. Focus is on ages six to 11.
The human brain is not fully mature until about age 25 or 26.Experts advise parents of “neurotypical” teens to provide structure, help with organizing their kids’ time and scheduling, monitor their kids’ social relationships, and guide them through decision making.
Parents of teens with FASD know that these strategies are even more crucial in helping their children safely make it to adulthood, and throughout their lifetime. Teens with FASD experience all of the pressures of puberty and the teen years, but often lack the right tools to handles these pressures.
Typical Teen Problems With FASD
Teens with FASD commonly display the following behaviors:
- Poor peer judgment
- Alcohol or drug abuse
- May become over stimulated and /or overwhelmed
- Requires consistency, strong academic supports, and patience
- Lacks the ability to maintain appropriate boundaries and social skills
- Appears to be functioning at a higher level than he or she really is (S/he can “talk the talk” but cannot “walk the walk”.)
- Sequencing problems
- Requires immediate feedback
- Other emotional problems may coexist with the FASD:
- depression
- eating disorder
- suicidal thoughts
- emotional alienation
- outrageous behaviors may continue (for example,. temper tantrums)
- school suspensions
As with any teenager during adolescence, significant changes are happening in the development and behavior of the teenager with a fetal alcohol impairment. Some changes and adjustments that will be taking place may include:
- Puberty
- Eating habits – FASD-affected teens may develop unhealthy eating habits and are at risk of becoming obese
- Anger and violence management issues
- Learning problems
Secondary Conditions Associated with FASD in Teens
The following are some of the secondary conditions that have been found to be associated with FASD in teenagers:
Mental Health Problems
Several studies have shown an increased risk for cognitive disorders, psychiatric illness, or psychological dysfunction among individuals with FASD. The most frequently diagnosed disorders are attention problems, including Attention-Deficit/Hyperactivity Disorder (ADHD); conduct disorder; alcohol or drug dependence; depression; or psychotic episodes. Other psychiatric problems, such as anxiety disorders, depression, eating disorders, and post-traumatic stress disorder (PTSD), have also been reported.
Disrupted School Experience
Teens with FASD are more likely than other teenagers to be suspended, expelled, or drop out of school. Difficulty getting along with other kids, poor relationships with teachers, and truancy are some of the reasons that lead to their removal from the school setting. Many teens with FASD remain in school but have negative experiences because of their behavioral challenges
Trouble with the Law
Teenagers (and adults) with FASD are more likely than those who do not have FASD to have interactions with police, authorities, or the judicial system. Difficulty controlling anger and frustration, combined with problems understanding the motives of others, results in many individuals with FASD being involved in violent or explosive situations. People with FASD can be very easy to persuade and manipulate, which can lead to their taking part in illegal acts without being aware of it.
Inappropriate Sexual Behavior
Individuals with FASD are more likely than teenagers who do not have FASD to exhibit inappropriate sexual behavior, such as inappropriate advances and inappropriate touching. Being a victim of violence increases the risk of participating in sexually inappropriate behavior.
Teresa Kellerman, FAS and Sexual Acting Out. 2004
Unplanned Pregnancy
Individuals with FASD who experience some of the other problems described here are more likely to become parents compared to individuals who do not have FASD. For example, an individual who has FASD may have poor judgment and poor impulse control as a result of primary brain dysfunction. These factors may result in unprotected sex and pregnancy.
Alcohol and Drug Problems
Studies suggest that more than a third of individuals with FASD have had problems with alcohol or drugs, with more than half requiring inpatient treatment.
What Helps?
At least some adolescents 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.
Teresa Kellerman, Teens With FASD: What Makes Them Tick? 2004
The following strategies offer helpful guidelines for teenagers with FASD:
- A structured environment includes limited choices by having clear and set routines.
- Allow the environment to adjust for development and understanding.
- Supervise adolescents to ensure that they do not get into troublesome situations.
- Instructions need to be brief and clear and understood by the adolescent.
- Create small steps when completing a larger task. Steps may have to be repeated.
- Adolescents with FASD may not have the ability to transfer one skill learned in one setting to another. Skills need to be taught in the way in which the adolescent will use the skill.
Can Counseling Help?
Effective counseling must be carried out knowing about the affected individual’s own areas of strength and difficulty—and by knowing the “normal” process of adolescent development (including what the family considers “normal” social risk-taking and family protection).
With this information in mind, counseling a teen with FASD should be solution-focused, not insight focused. Counseling a teen with FASD must be adapted to deal with the social skills problems that many teens with FASD encounter, difficulties managing emerging sexuality, educational frustrations, and other age-related concerns that are part of growing up with FASD. The teen with FASD may accept and get the most out of counseling best if the counselor is an advocate, coach, or mentor—someone who the youth with FASD feels is “there for me.”
A counselor may be most useful in mediating the sometimes confusing and complex relationships individuals with FASD often have with others. Professionals who know about FASD and its developmental impact, and who are flexible enough to adapt their counseling approaches, can likely be very helpful to a teen or young adult with FASD. This kind of knowledgeable professional can also be helpful as part of a team— supporting parents, teachers, and other service providers in working toward the delicate balance between providing an extra measure of structure and the very age-appropriate need of a youth with FASD to take some social risks and test their readiness and capacity for adult life.
Peer Support Groups
Teenagers with FASD may benefit from talking with other teens and adults who are successfully dealing with the same condition, or with teens who are dealing with similar challenges, such as drug abuse, depression, learning differences, etc. They may feel less alone and can learn from role models. Peer support groups can provide ongoing encouragement and a chance to learn about individual differences.
Useful Links
FAS/E: A Standard of Care for Adolescents – The Anti-Social Years
Diagnosis of FASD in the Adolescent Years
What Makes Teens with FASD Tick
Make Life Easier for Teenagers with FASD
Tips and Tactics
FASD and the Family
Special FASD Issues
Visuals for Teaching Tasks and Concepts Although posted to an autism education site, some of these images may also be useful for helping teens with FASD to learn or organize tasks, understand concepts, and master skills for daily living at home.
Transition to Adulthood – Special Education and Related Services for Teenagers With Special Needs
The Impact of Having Co-morbid ADHD and FASD diagnoses
Sees No Danger and Wanders Afar A story in the Native American tradition of two young bears with FASD who meets, fall in love and leave home. Focus is on ages 12 to 17.
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 Behaviorwas 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 ProblemsOf 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 Employmentwere 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
Special FASD Issues
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.
MORE USEFUL RESOURCES
Strategies for Addressing FASD A 1-page chart that lists challenges, across the lifespan, for individuals with FASD and strategies to help address those challenges.
Developmental Overview of FAS/E Through the Eyes of Parents
Fetal Alcohol Syndrome: A Parents Guide to Caring for a Child Diagnosed with FAS
Executive Functioning A PDF of a slide presentation discussing the kinds of deficits in this area that are characteristic of alcohol-related brain damage. May be useful in working with a clinician, teacher or others in describing the individual’s adaptive function challenges.
Social Thinking – Paradigm and Training for Persons with Brain-Based Interpersonal Challenges
FASD Signs and Symptoms Through the Lifespan
Telling Your Child He Has an FASD
Journey Through the Healing Circle A series of four videos for caregivers and family members of children who may have been exposed to alcohol during pregnancy. They use a traditional Native American storytelling approach. FASD is broached in a non-threatening, respectful manner.