Health & Safety

These resources address specific health and safety issues of individuals with FASD.

Anger & Violence
Individuals with FASD may have problems controlling anger and frustration, as well as having problems understanding the motives of others. They are prone to anger outbreaks, tantrums, yelling or becoming extremely upset. These traits may lead teens or adults with FASD to violent behavior. Statistically, teenagers and adults with FASD are more likely to be involved with the criminal justice system than their peers are. 
 
He could also become very angry and violent and he has ruined furniture by cutting it with knives (when I used to leave them out), has threatened me physically and punched and kicked holes in walls and doors.
—Elizabeth Russell, Mother
 

Lack of impulse control and inability to predict consequences can cause a person with FASD to quickly escalate to a rage when they are frustrated about something. The most important thing that parents, caregivers, and educators can do when the person with FASD is angry is to prevent the rage or the potentially violent or threatening situation. Remove items that could be used as weapons.

Strategies to avoid rages vary depending on the age and maturity of the individual.

Good Tips

When an individual with FASD becomes oppositional, upset, or angry, if the adult authority figure uses a stronger (louder or more forceful) demand; i.e., “You better do it!”, rather than leading to compliance and obedience, the result is more than likely increased resistance, defiance, anger, and melt-down. Sometimes the melt-down leads to violence and/or or running away. This pattern is exhausting for parents, and potentially dangerous for the child, teenager or adult with FASD.

Therefore:

  1. Remember that persons with FASD cannot self-regulate without coaching—if they could, they would.
  2. Keep in mind that persons affected by FASD cannot access their coping skills without reminders, prompts, coaching, help moving down the arousal scale, and practice.
  3. Be proactive—teach the person with FASD stress management and anger management skills, practice them, and practice or role-play coaching them—watch for signs of a meltdown before it becomes full-fledged.
  4. Be low-key, matter-of-fact, and remain calm—a raised voice can feel abusive to an individual with FASD .

Useful Links

Art, Anger & FASD
10 Creative Anger Management Strategies
Avoiding Rages
When "Attitude" Comes From Low Blood Sugar

Drugs & Alcohol

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
Education / Special Education
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.
Anger and Violence
Perseveration
Time & Time Management
Individuals with FASD in Community and Social Groups
Security
Sleep
Stealing
Lying
Dealing with Unacceptable Behavior
Sensory Processing Issues
Hygiene and Cleanliness
Eating and Nutrition
Medical and Dental Treatment 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.

 
Eating & Nutrition

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.

Provide close supervision at all times, because the bottom line is that, in spite of all the knowledge and understanding (individuals with FASD have) about what appropriate behavior is expected of (them), the executive functions will still not be working, and without an authoritative figure looking over (their) shoulder, (they are) likely to continue to engage in behaviors that could lead to serious consequences. (They) can understand those consequences, but still not be able to control (their) impulses when unsupervised.
    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.


A key to successfully navigating through the teen years to adulthood for individuals with FASD is their having a good understanding of how and why their brain functions as it does and accepting the reality of life with FASD.  This has helped my son and many other young adults with FASD to accept the presence of an “external brain” in their lives.  This measure will ensure their health and safety in a world that can be full of risks for people who have normal adult appearance and intelligence but have child-level decision-making capacity.
    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
Criminal Justice
Driving
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 teens with FASD to learn or organize tasks, understand concepts, and master skills for daily living at home.
Anger and Violence
Drugs and Alcohol
Perseveration
Sexuality
Time & Time Management
Transition to Adulthood - Special Education and Related Services for Teenagers With Special Needs
Individuals with FASD in Community and Social Groups
Sensory Processing Issues
Money Management
Stealing
Lying
Security
Sleep
Hygiene and Cleanliness
Medical and Dental Treatment Issues
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.
 
Hygiene

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.

Medical & Dental

Tab Content

Mental Health

According to the U.S. Substance Abuse and Mental Health Services Administration, FASD can co-occur with many mental health disorders. the include major depressive disorder, psychotic disorders, personality disorders, substance use disorders, conduct disorder, and reactive attachment disorder.

Failure to recognize mental health issues among individuals with an FASD increases the risk of any or all of the following signs of poor mental health:

  • Low self-esteem
  • Psychiatric hospitalization
  • Problems in school
  • Family and relationship problems
  • Alcohol and drug abuse

What Kind of Counseling Works with an FASD-Affected Person?

Although every FASD-affected person is unique, parents, teachers, and clinicians commonly recognize that the individual has chronic behavior problems and poor understanding of their own impairments and how to mitigate their effects. Because persons with prenatal alcohol-caused brain damage have difficulty understanding abstract concepts and have memory and problem-solving difficulties, "insight-based" therapy tends to be ineffective.

We tried many counselors for our son. Some said they knew about FASD; others didn't seem to understand his difficult behaviors, and they wanted to work more with us as parents instead of (with) him. (Finally) it was a mutual decision (with the therapist) that we not waste any more time and money, so we stopped the sessions. Our son's cognitive skills are too delayed; he can't remember what is discussed, and he didn't like talking to the counselors, so (therapy) was a waste of time.

— From a mom named Tabitha

Choosing a Therapist

My daughter has had the same (wonderful) therapist for the past ten years, starting when she was 13 years old...(The therapist) is an LCSW who is exceptionally relational, and a very skilled and caring and flexible (in approach) person. At the onset, the clinician knew little about FASD, but she was exceptionally open-minded and willing to take my input and read whatever I offered to her. Before choosing her, I interviewed a half dozen other (recommended) folks and felt she was the best choice...you just can’t take someone whose name is on your insurance panel, or whose name you find online.

It can help if the therapist is able to modify their therapy from what I would call "High Level Insight Oriented" to something more akin to supportive therapy, combined with mothering -- but mothering that the person with FASD will accept -- to coaching, to guiding and advising.

I am not going to be around forever and I am thrilled that my daughter has learned that there are others in the community who she can go to for help. I call them her ‘helper people’ and she has some mighty good ones in our community, including (her) therapist...(who) has been a crucial steadying force for my daughter all these years. My daughter can go months without seeing her, but when the going gets rough, she knows she can always call her therapist -- and does...My daughter will take input/advice/cautions from the therapist that she will not take from me, and getting that from the therapist takes the burden off me.

— From a mom named Susan

Parents, caregivers or others who seek good therapists for a person with FASD should be aggressive in choosing a counselor who meets the following counseling practices:

  1. Ability to establish and maintain a genuine rapport with a client with FASD.

    Therapy has worked so-so for our... son. I often question whether we have the right therapist, whether the therapy works, etc. I don't think so; but, our son connects with him, has a rapport, and wants to meet with him. The benefit I see is that there is another adult besides (my husband and me) who knows (our son) over several years and is a proponent of him. He's helped us when we've needed to convince our son to try different programs and schools. The jury is still out, but I feel it is important for (my son) to have connection with another adult outside of the family who has his best interests at heart.

    From a mom named Annette

  2. Problem-centered therapy works best for FASD-affected clients. Ideally, counseling for persons with FASD combines coaching and mentoring with coordinating services and advocating for the individual
  3. Good mental health case management aligns home and school (or work) behavior programs.
  4. Depending on the individuals symptoms and behaviors, much counseling emphasizes working on eliminating aggressive behaviors, and building anger management and socialization skills.
  5. Effective counselors must be knowledgeable about FASD or willing to be proactive about learning about it -- and to demonstrate it over time.

    It certainly can’t help if the therapist doesn’t ‘get it’ about FASD, though someone who doesn’t get it and is willing to learn can, over time, get it, and even spread their knowledge to other clinicians...I know that (my daughter's therapist) now has identified three or four other young people in her practice as being affected with FASD – before my daughter I don’t think she would have spotted them or known much about how to think about this part of their neurocognitive functioning.
    —From a mom named Susan

  6. Within standards of therapeutic confidentiality, therapists must collaborate and communicate openly with the client's family or other loved ones. They must also work with the client's psychiatrist or other practitioner who prescribes medication for the individual's behavioral symptoms.

     

    On more than one occasion, the therapist has called me or signaled me with concerns that I would otherwise not have been aware of....We have worked it out that the therapist will listen to my voice-mail messages about what’s going on in a situation in which my daughter may not be giving the whole story, and incorporate that knowledge into the session (mostly, I think, in influencing the questions she asks and what she takes as the ‘gospel truth’ and what she doesn't), without necessarily revealing that I had called or added more info to her picture of things... Again, she is very careful to share with me in ways that allow her to still feel that she is honoring my daughter’s confidentiality above all. And my part of the bargain is to absolutely and totally keep confidential anything she lets me know about, or even hints about.
    —From a mom named Susan

  7. Because of memory difficulties in FASD-affected clients, therapists need to be patient and willing to re-teach the FASD-affected client information or strategies that have already been learned.
  8. Therapists who are adaptable to the FASD-affected client's difficulty with time and time management, and to be understanding and flexible if the client is occasionally early or late for appointments. For adult clients especially, willingness to make reminder calls on the day of the appointment, and to make check in with the client to be sure that the client has a way to get to the therapist's office, are valuable.
  9. Therapy that incorporates time for the client to role-play problem-solving scenarios is very helpful.
  10. Because persons with FASD are concrete thinkers and have difficulty understanding and generalizing concepts expressed in words, such as "self-esteem", "depression", or even "anger", letting the client express himself through drawings, photographs, music, or other "right-brained" ways can be very useful, both in allowing the client to express themselves, and for therapists to understand the FASD-affected client's perspective.

Useful Links

Psychiatry and FASD
FAS and Mental Health Services: A Therapist's Perspective
An Approach to Psychotherapy for Individuals with FASD
Group Therapy for Youth with FASD
The Value of Psychotherapy for Adults with Fetal Alcohol Spectrum Disorders
Mental Illness in Adults With Fetal Alcohol Syndrome or Fetal Alcohol Effects
Discussion of Adolescent Therapy Groups
A New Concept of Mental Health Part A: A Focus on Strength
Related / Co-Occurring Conditions
Anger and Violence
Coping with Anxiety in Your FASD-Affected Loved One
Fetal Alcohol Syndrome: Implications and Counseling Considerations

Security
Many families with a loved one affected by FASD are concerned with keeping the individual safe and secure; in addition, families also may need to protect other family members or valuable possessions from the impulsive behavior of the FASD-affected person living in the household.
I'll never forget my horror at discovering my daughter's repeated attempts to go shopping in the middle of the night by climbing out of her bedroom window.  She would manage somehow to get $10 or $20 and would hide it in the inner sole of her shoe. Then she would wait until 2 in the morning to walk to the 24-hr. supermarket over a mile away to get all the sweets and goodies her money could buy. The weight gain would be serious enough.  But I was truly concerned for her safety, as she was a trim 110-lb. teenager with long blonde hair.  Oh!  I still shudder to think about it.
— Teresa Kellerman, 2006.

Most children, many teens and some adults with FASD need close supervision at all times. A small percentage do not need to be monitored very closely and only need minimal supports. A majority need closer supervision than they would if they did not have any disabilities. And some need very close supervision that is beyond what parents (or other caregivers) can reasonably provide in a family setting.

Security is an issue especially for two groups of FASD-affected individuals:

  • Those who sneak out of the house to engage in risky behavior at night (sexual behavior, substance abuse, etc.).  They lack control over their impulses, have very poor judgment, and are naively vulnerable to the suggestions of their peers. 
  • Those who, in addition to FASD, have a mental health issue (Reactive Attachment Disorder (RAD), Bipolar Disorder, etc.) that prevents them from having control over their behavior. These individuals may engage in behavior that places themselves or others at risk. 

Some FASD-affected individuals need to have objects that can serve as weapons (e.g., knives and scissors) locked up. Some families need to restrict access to food. Some parents need to monitor their child's behavior during the night.

In addition to controlling where the FASD-affected individual goes, what he does and who she spends time with, watching the child's every move (waking and sleeping), keeping valuables in locked drawers or safes, padlocking kitchen cabinets and the refrigerator, locking all exterior doors and all windows, and putting keyed doorknobs on all bedroom doors (and making sure that parents are the only ones with access to the keys), perhaps the easiest way to monitor children's behavior is by getting and using alarms in the home.

Useful Links

Related / Co-Occurring Conditions
Security Alert... FASD Style

Sexuality

Sexuality-Related Behavior of Children With FASD

Younger children with FASD often may have no fear of danger, do not respond to verbal warnings, and have no stranger anxiety. Younger children are highly tactile and may explore their bodies at inappropriate times (for example, during class time). They may also be very curious about the opposite sex.

Older children with FASD may seek close personal contact with everyone, share inappropriate information, and have difficulty distinguishing how to talk to or what to talk about with strangers, professionals, family, neighbors, school staff, etc. They are sexually curious (as all older children and adolescents are) but they have difficulty interpreting social cues from the opposite sex (“He smiled at me, so he’s my boyfriend”).

Teenagers with FASD may have trouble remembering to use a condom every time they have sex, and can’t foresee pregnancy in order to take precautions every time.

Teaching Safe Behavior Around Sexuality for Children With FASD

Strategies for Younger Children With FASD

  • Practice constant supervision.
  • Teaching personal boundaries is very important and must be taught at a young age, and constantly reinforced.
  • Teach relationships at home and wherever you go. If your child approaches strangers, deal with it on the spot, in front of the stranger. Clearly state that this is not a familiar person. Say, “This is a stranger. You do not talk to strangers (unless I give you permission).” Or use a phrase such as “Stranger Danger.”
  • Teach “private bodies” rather than "private parts", so that children are not confused.
  • Teach the names of body parts.
  • Explain to your child that everyone must be an arm’s length away.
  • Ask your child's school about resources that teach “how to make a friend, how to be a friend.” Get the printouts and take them home to use.
  • Model social interactions step by step; for example, how to shake hands, and how to give or receive hugs. Watch to see if your child is understanding; if not, help her to see the connection. (Note: If your child is sensitive about touching, tell your relatives in advance what your child prefers.)

Strategies for Older Children and Teens With FASD

  • Supervise your child's outings and activities as much as possible.
  • Use of chairs with arms may help to delineate personal space.
  • Provide cues for boundaries such as masking tape on the floor and furniture.
  • Consider making some simple rules (for example, “Everyone has to be an arm’s length away.”).
  • Arrange a friendship as early as possible with a peer of your child who is responsible and who can act as a buddy when you are not around. Keep this person in mind to consider a friendship that can be taken into adulthood.
  • Educate your child’s peers about FASD, and educate your child about what is a safe and acceptable request from a friend.
  • Provide safe activity options for your teen to get involved in. (It’s not about what she can’t do; it’s what she can do).
  • Be aware of the grade in which sex education is taught.
  • Reassure your daughter that she will not get her period if she goes to school and learns about menstruation.
  • Be open and willing to talk about menstruation. Explain it in concrete ways your daughter will understand.
  • Let your daughter know that it’s okay to practice with panty liners months or years before her period begins.
  • Mark your daughter's period on a calendar. It will remind you and her.
  • Show your daughter strategies for treating menstrual cramps, like using a hot water bottle.
  • Be open and willing to talk about masturbation for pleasure and stress relief.
  • Keep books about sex education all around the house.
  • Practice with condoms and birth control months before required.
  • Give lessons in sex education regularly. These lessons should cover a variety of topics, at the level of your child's understanding, and in concrete terms:
    • Dating
    • Responsibilities of engaging in sexual behavior
    • Relationships
    • Assertiveness/the right to refuse to be touched and the right to refuse to have sex
    • Sexually transmitted infections
    • Pregnancy
    • Contraception strategies
    • Masturbation
    • Sexual abuse
    • Personal care and hygiene
    • Puberty changes/menstruation
    • Medical/gynecological examinations
  • Provide longer-acting birth control than the traditional daily pill (Depo-Provera, the Patch or, an IUD) for your daughter.
  • Discourage inappropriate displays of affection.
  • Express clear behavior expectations that conforms with family and societal standards. If your family values include "only married couples have sex", say so, and make sure your child knows what you mean by "sexual behaviors." (Many teenagers, for example, will argue that "oral sex" or "anal sex" is "not really sex"; so parents need to be very clear about their expectations.)
  • Recognize the importance of feelings.
  • Practice appropriate displays of affection. 
  • If possible, chaperone your child's dates, or have a responsible friend double-date with your child and his sweetheart.
  • Teach the difference between acceptable behaviors in a private setting and those which are acceptable in public.

Useful Links

Fetal Alcohol and the Rules for Sex
Healthy and Safe Sexuality for Teens and Adults with FASD
Working with Children Exhibiting Sexual Behavior Problems
Safety Issues: FASD and Sexuality
Marriage and Relationships
Parenting


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Sex Rules For FASD

Sleep

A majority of children and adults with FASD have sleep disorders. One study found that 82 out of 100 caregivers reported that their children with FASD have sleep issues. Sleep issues can range from night terrors, waking in the middle of the night, having difficulty falling asleep, and sleepwalking.

Sleep Issues In Children With FASD

Sleep difficulties in children with FASD are a common and important problem that can impact daily functioning. Intervention may include cognitive strategies (bedtime stories or other rituals the child uses to mentally prepare for sleep, sensory-based strategies, and medical strategies (such as the over-the counter remedy Melatonin, or prescription medication such as Trazodone or Seroquel).

Providing supportive environmental accommodations often helps children with FASD. This can include strategies such as altering the environment, reducing stimuli, manipulating the sensory input, and self-regulation strategies, such as outlined in the Alert Program™.
A strategy for the FASD-affected child may include the provision of a “sensory diet”; for example, the therapeutic use of sensation via activities embedded in the daily routine to meet the child’s individual sensory needs and preferences. This may include the method for waking the child in the morning (lighting in the room, type of alarm, music). Strategies include:

  • The room should be a calm, uncluttered, safety-proofed space, with dark or low lighting, and room darkening blinds. Use a nightlight as needed.
  • A slow moving, rhythmical, visual tool, such as a fish tank, can also be calming.
  • In some instances, having the child sleep in a small tent can help with limiting distracting visual stimuli and aid sleep.
  • A quiet room that is carpeted for noise absorption is generally preferred.
  • Providing “white noise” from a fan can be calming and can help to block out noises from the environment.
  • Relaxing music, or music with a strong beat, has been recently reported to be helpful for falling asleep.
  • Often removing tags from pajama/nightgown clothing, and softening new pajama/nightgown and sheet and pillowcase material by multiple washings can be helpful.
  • Deep pressure, a calming massage, or sleeping with a weighted blanket may provide needed tactile input.
  • Some children with FASD engage in “picking behavior” which may result in stuffed animals or mattresses being pulled apart. Giving the child "hand fidgets", such as a stress ball or blankets with preferred fabric tassels may help to meet his or her tactile needs.
  • Sleeping in a sleeping bag, or “nesting” with multiple stuffed animals may help a child who feels that his body is "unmoored" in the dark.
  • Slow rhythmical rocking, as in a rocking chair, can be calming before bed and can address the child’s vestibular processing needs.
  • In general, fast movements, such as running or spinning, may cause over-stimulation and should be avoided before bedtime.
  • Children with FASD often have a keen sense of smell. Parents, caregivers, and other adults should be aware of all scents in the environment (for example, laundry soap, fabric softener, toothpaste, body soap, or lotions), as they can be overwhelming, especially before bed.  Determining which scents are calming for the child (for example, vanilla, banana, or lavender) can be helpful.

Sleep Issues In Teens and Adults With FASD

Many adults with FASD have poor sleep patterns. This can be due to irregular schedules, a lack of structure to ensure a reasonable and regular bedtime, and a lack of
self-regulation without assistance. As with children or teenagers with FASD, adults with FASD also may have difficulty with sleep because of an inability to block out sensory information; not being able to understand cause and effect (e.g., do not understand they should get to bed early because they have to get up early in the morning); memory problems; or other brain-based issues.

To avoid conflicts or rushing in the morning which may impact on the entire day, here are some accommodations which may help the FASD-affected adolescent or adult to manage sleep challenges:

  • If possible, arrange work/school schedules to accommodate the person's sleep patterns. For example, some individuals do better sleeping in during the morning and then going to a job later in the afternoon and evening.
  • Provide assistance with ensuring the person has clean clothing, packing lunches, and organizing backpacks, purses, or other items, so that the person avoids being anxious about it the night before or in the morning, and so that the morning routine is as calm as possible.
  • Help the person to establish evening routines and maintain them.
  • Emphasize calm activities to help with relaxation and restful sleep. Keep the bedroom uncluttered and limit stimulating distractions. Use any helpful and healthy strategies (see above) to improve  the person's ability to fall asleep and sleep through the night.
  • Talk about what might help during transitions between sleeping and waking. Decide with the person on creative methods for waking them calmly, to reduce their negative reactions to your assistance.
  • Discuss motivators for getting up and getting ready to help encourage successful responses to wake-up calls. Everyone needs a reason or a purpose to get up in the morning. If a person is engaged in their work/activity, and it’s a good fit, the motivation to get enough sleep and to get up on time is intrinsic.

Useful Links

Chronic Care for Sleep
Sleep and FASD Are Not Friends
Sleepless in FAS Land: How to Help Your Child Sleep Better
Sleep Health Issues for Children with FASD: Clinical Considerations
Sleep Strategies for Children with FASD

Nightmares and Disturbed Sleep in FASD
Sleep Problems in Children with Fetal Alcohol Spectrum Disorders

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