October newsletter

Fetal Alcohol Spectrum Disorders Awareness Day Sept. 9 is International Fetal Alcohol Spectrum Disorders Awareness Day. Drinking alcohol during pregnancy can cause FASDs, which include a wide range of physical and mental disabilities and lasting emotional and behavioral problems. Learn more about FASD by visiting the AAP Medical Home Web page or the CDC website

FASD: Despite challenges, not an intellectual deficit

by Gayle Young, KCAW
September 7, 2012

This is the very good part: Many parents are contacting the Team to ask that their children be evaluated. It is simple–the parents say that they may have used alcohol before realizing that they were pregnant. The children are accepted for evaluation.

It is so easy that there are sixty children waiting now for a diagnosis. We sometimes joke at the clinic that may have to start working the evening shift as well as in the daytime. But the research is clear: a diagnosis at the youngest possible age is one of the strongest predictors for a good life outcome for alcohol-affected children.

And, this is the very hard part: some current statistics are not hopeful. 80% of people with FASD, Fetal Alcohol Spectrum Disorders, cannot keep a job without on-going support. 70% will be confined sometime in their life for mental health reasons, alcohol and drug rehab or for committing a crime. 60% of people with FASD will have trouble finishing high school. And over 50 % will have sexual involvements that could get them into legal difficulties.

Here is a clip from the American Bar Association regarding a new requirement for legal professionals.  For the complete article go to:  www.americanbar.org

 RESOLVED, That the American Bar Association urges attorneys and judges, state, local, and specialty bar associations, and law school clinical programs to help identify and respond effectively to Fetal Alcohol Spectrum Disorders (FASD) in children and adults, through training to enhance awareness of FASD and its impact on individuals in the child welfare, juvenile justice, and adult criminal justice systems and the value of collaboration with medical, mental health, and disability experts.

FURTHER RESOLVED, That the American Bar Association urges the passage of laws, and adoption of policies at all levels of government, that acknowledge and treat the effects of prenatal alcohol exposure and better assist individuals with FASD.

Fourth Annual FASD Conference

Thanks to all that attended this year and made it a success!  There was a wonderful turn out of around 250 people, including:  mental health professionals, caregivers, parents, guardians and advocates for the cause.  A special thanks to our guest speakers:  Joe Cassidy, Tom Donaldson, Dr. Stephanie King, Dr. Tina Wade, Dr. Todd Ochs, Megan Hazzard, Aliceson Treach, Shereen Venning, Wendy Mattison and Janet McDonald.  An extra special thank you to Ajeet Charate, without whom the conference would not be possible.  We are looking forward to next year’s conference and hope to see everybody there.

American Bar Association Resolution Excerpt

AMERICAN BAR ASSOCIATION

Co-Sponsors: ABA Commission on Youth at Risk, Criminal Justice Section, Commission on Disability Rights,

Commission on Homelessness and Poverty, Death Penalty Representation Project, Health Law Section,

Judicial Division, Alaska Bar Association, and the American Judicature Society





RESOLUTION APPROVED BY THE ABA HOUSE OF DELEGATES – AUGUST 7, 2012

RESOLUTION

RESOLVED, That the American Bar Association urges attorneys and judges, state, local, and specialty bar associations, and law school clinical programs to help identify and respond effectively to Fetal Alcohol Spectrum Disorders (FASD) in children and adults, through training to enhance awareness of FASD and its impact on individuals in the child welfare, juvenile justice, and adult criminal justice systems and the value of collaboration with medical, mental health, and disability experts.



FURTHER RESOLVED, That the American Bar Association urges the passage of laws, and adoption of policies at all levels of government, that acknowledge and treat the effects of prenatal alcohol exposure and better assist individuals with FASD.

Handbook of Children with Special Health Care Needs

Recently, Springer published the Handbook of Children with Special Health Care Needs – David Hollar (Ed.). Chapters of potential interest include:


· A chapter on FASDs:


Bertrand, J and Dang, EP. (2012). Fetal alcohol spectrum disorders: Review of teratogenicity, diagnosis and treatment issues. In D. Hollar (Ed.),Handbook of Children with Special Health Care Needs (231-258). New York, NY: Springer. DOI: 10.1007/978-1-4614-2335-5


· A chapter by our colleague from our AAP FASD Expert Panel, Dr. Renee Turchi:

Turchi RM, Mann MY. Building a medical home for children and youth with special health care needs. In D. Hollar (Ed.), Handbook of Children with Special Health Care Needs (399-418). New York, NY: Springer. DOI: 10.1007/978-1-4614-2335-5


· And a chapter by our NCBDDD colleagues on children and adolescents with mobility limitations:


Alriksson-Schmidt AI, Thibadeau JK. Children and adolescents with mobility limitations. In D. Hollar (Ed.), Handbook of Children with Special Health Care Needs (87-105). New York, NY: Springer. DOI: 10.1007/978-1-4614-2335-5




Full table of contents can be seen at: http://www.springerlink.com/content/978-1-4614-2334-8/contents/

Functional neurologic abnormalities due to prenatal alcohol exposure are common

·         A new study has examined heavy alcohol exposure during pregnancy using population-based data in Chile.

·         Approximately 80 percent of the children examined had one or more abnormalities associated with alcohol exposure.

·         Functional neurologic impairment was the most frequent and sometimes only sign of alcohol exposure.

Most children who are exposed to large amounts of alcohol while in the womb do not go on to develop fetal alcohol syndrome (FAS). Instead, problems that arise fall under a broader term that describes a spectrum of adverse outcomes, fetal alcohol spectrum disorders (FASD). A study using population-based prospective data from Chile to examine the risk for developing components of FASD has found that functional central nervous system abnormalities were alarmingly high.

Results will be published in the October 2012 issue of Alcoholism: Clinical & Experimental Research and are currently available at Early View.

"FAS is a clinical diagnosis with specific criteria," explained Devon Kuehn, a postdoctoral fellow at the Eunice Kennedy Shriver National Institute for Child Health and Human Development and as well as corresponding author for the study. "A diagnosis of FAS requires abnormalities in the three areas of facial features, growth and central nervous system. Conversely, FASD is not a clinical diagnosis, but a group of conditions that may exist in children exposed to alcohol in pregnancy. The effects may be mild or severe and each person may be affected differently." Kuehn is also a staff neonatologist at Walter Reed National Military Medical Center.

A unique aspect of this study was the collection of detailed alcohol consumption during the pregnancy, added Kuehn, which was validated with home visits. "We focused on growth, facial, and central nervous system abnormalities in children heavily exposed to alcohol in utero," she said.

"While it has long been known that not every child exposed to large amounts of alcohol during gestation is impacted by that alcohol exposure," added Edward P. Riley, a professor in the department of psychology at the College of Sciences at San Diego State University, "this study provides some of the best data available on just how common various indications – for example, growth retardation and physical and functional anomalies – of prenatal alcohol occur."

Kuehn and her colleagues initially began their study with a group of 9,628 women who were screened during their first prenatal appointment in Chile. From this first screening, 101 were found to consume at least four drinks per day, and were then matched with 101 women who reported no alcohol consumption during pregnancy. Detailed data regarding alcohol consumption were collected during the pregnancies, and the children were evaluated up to 8.5 years of age by clinicians who were unaware of their alcohol-exposure status.

"Following heavy alcohol exposure during pregnancy, 80 percent of the children had one or more abnormalities within the diagnostic criteria of FAS," said Kuehn. "In other words, women who drink heavily during pregnancy are very likely to have a child with abnormalities. Even more concerning is that functional central nervous system abnormalities were the most common problem in children heavily exposed to alcohol in utero. Therefore the most common effects on the child will impact learning, behavior, language, or mental function."

"It is critical to note that while physical characteristics associated with FAS were not all that common, over 40 percent of the exposed children had evidence of functional abnormalities," said Riley. "These are children who might qualify for a diagnosis of an alcohol related neurodevelopmental disorder (ARND). The significance of this cannot be overstated, as these are children who often go unrecognized and untreated, or are frequently misdiagnosed."

Both Kuehn and Riley noted the dangers of binge drinking. "It is interesting that binge drinking continued to have a significant effect on outcome in addition to the daily heavy alcohol consumption," said Kuehn. "Other studies have shown that binge drinking may have the greatest risk on children, but we are the first to show binge drinking remains a risk factor even in women drinking heavily every day."

"So the take home message of this paper is that high levels of alcohol exposure and in particular binge drinking can lead to behavioral or functional issues, even in the absence of growth restriction or facial characteristics that are typically associated with prenatal alcohol exposure," said Riley. "These data indicate that physicians need to consider prenatal alcohol exposure in the etiology of functional deficits. There has been much controversy over the behavioral teratogenic effects of alcohol and a diagnosis of ARND, but these data show that functional consequences in the offspring were much more common than physical markers of exposure."

"We hope to convey to clinicians taking care of children that a significant number of children with neurologic effects from alcohol exposure may not present with the more recognizable facial or growth abnormalities," added Kuehn. "For clinicians working with women of childbearing age, the key message would be to counsel these women that binge drinking and total intake are important risk factors for the outcome of their child and that daily heavy drinking will most likely result in a an adverse outcome in their child."

"Studies such as this may help us to determine what factors may place an individual at risk for having an impacted child," added Riley. "What differences in environmental factors such as diet, or genetic factors, might exist between those who had an effected child and those who did not? It would be interesting to follow these children and determine how their behavioral profiles change as a function of age."

For the full article, click here. 

Senate Raises Awareness of Fetal Alcohol Disorders

On August 1, the Senate approved, by unanimous consent, a resolution (S. Res. 536) recognizing September 9, 2012, as Fetal Alcohol Spectrum Disorders Awareness Day.

The resolution, sponsored by Sen. Lisa Murkowski (R-AK) includes several findings:

• The term “fetal alcohol spectrum disorders” includes a broader range of conditions than the term “fetal alcohol syndrome” and has replaced the term “fetal alcohol syndrome” as the umbrella term describing the range of effects that can occur in an individual whose mother consumed alcohol during her pregnancy;
• Fetal alcohol spectrum disorders are the leading cause of cognitive disability in Western civilization, including the United States, and are 100 percent preventable;
• Fetal alcohol spectrum disorders are a major cause of numerous social disorders, including learning disabilities, school failure, juvenile delinquency, homelessness, unemployment, mental illness, and crime;
• In February 1999, a small group of parents with children who suffer from fetal alcohol spectrum disorders united to promote awareness of the devastating consequences of alcohol consumption during pregnancy by establishing International Fetal Alcohol Syndrome Awareness Day; and
• On the ninth day of the ninth month of each year since 1999, communities around the world have observed International Fetal Alcohol Syndrome Awareness Day.

The resolution calls upon people in the United States to “observe National Fetal Alcohol Spectrum Disorders Awareness Day” with ceremonies and events that “promote awareness of the effects of prenatal exposure to alcohol; increase compassion for individuals affected by prenatal exposure to alcohol; minimize the effects of prenatal exposure to alcohol; and ensure healthier communities across the United States.”

Fourth Annual FASD Conference

We are pleased to announce that the fourth annual Fetal Alcohol Spectrum Disorder conference will be held this year on September 28, 2012.

More information about the conference can be obtained here.

We are also asking for donations from anyone who is willing to give. Please keep the research and treatments progressing! More information about ways to donate can be found here.

Seventh Issue of Fetal Alcohol Forum

The issue contains the latest research and articles by the top experts in FASD.

Fetal Alcohol Forum-Issue 7

Informative Website

http://fasd.brighttomorrow.com/

Informative Videos

NOFAS Now- JUNE 2012

NOFAS Now- MARCH 2012

Wisconsin Association of Criminal Defense Lawyers (WACDL) Educational Seminar on FASD

Date: Friday and Saturday, July 13-14, 2012

Location: Holiday Inn and Conference Center, Stevens Point, WI

Day One: Fetal Alcohol Spectrum Disorder (FASD) and Its Implications for Guilt, Sentencing, and the Practice of Criminal Defense.

Day Two: Getting to the Best Outcome: Negotiating Settlements and Arguing Sentencing

See www.wacdl.com for more information

ABA To Host Webinar on Fetal Alcohol Spectrum Disorder

On June 12, 2012, at 1 p.m. E.T., the American Bar Association will host the Webinar, “Fetal Alcohol Syndrome Disorder (FASD): What You Need to Know to Help Your Clients.”

Children and youth within the justice system are disproportionately affected by FASD, with ramifications for a variety of cases including delinquency, abuse and neglect, and education. This Webinar will help lawyers recognize individuals with FASD, especially those with IQ's above 70. Speakers will discuss how courts should treat individuals with FASD, the services they should receive, and the accommodations that courts should provide.

Continuing legal education credits will be available. Registration is available online.

Resources:

For more information and to register, go to www.apps.americanbar.org/cle/programs/l12jun1.html?sc_cid=CEL2JUN-A%20%3.

Summer Training Program for Teens

The Illinois Centers for Fetal Alcohol Spectrum Disorders (ICFASD) is pleased to announce that a 12 week curriculum based summer training program will be offered at the Naperville location. This social skills program is for teenagers (Age 13 -18) with an FASD or suspected of having an FASD. The parent-assisted intervention for teenagers is based on a comprehensive evidenced based PEERS (Program for the Education and Enrichment of Relationship Skills) and the success of the Children's Friendship training program also developed at UCLA. It is developed by Dr. Elizabath Laugeson and Fred Frankel of UCLA. Dr. Mary Connor of UCLA has also developed the 'Best Buddy' program for children with FASD.

The PEERS program teaches strategies for tackling issues such as developing conversational skills, choosing friends, using humor, get-togethers, teasing, bullying, gossiping, and handling disagreements. Each session chapter includes handouts, homework assignments, descriptions of what to expect.

As we all know that teens that are prenatally exposed to alcohol often display poor social skills, failure to consider the consequences of their actions, difficulty understanding social cues, indiscriminate social behavior and difficulty communicating in social contexts. Furthermore, the development of adequate and timely social skills is important because these teens with poor social skills acquire negative reputations among their peers and experience social rejections and a risk of engaging in delinquent acts.

This intervention is a 12 week, parent-assisted teens social skills training program for children ages 13 - 18 who are experiencing difficulties making and keeping friends. The goal is to assist them to become more accepted by peers and to make one or two new close friends. Parents attend separate, concurrent sessions to learn how to help and support their teenagers develop appropriate social skills.

This group will meet on Wednesday's from 4 - 6 pm. The group will start on June 6, 2012 and end on August 15, 2012. Week 11th and 12th (graduation) will be combined on August 15, 2012. The group on July 4, 2012 will be held on an alternate date that will be convenient to most parents.

The cost for the 12 week program is $500 with $150 due at registration and the rest can be paid in three installments.

Location: 1260 Iroquois Ave. Suite 300. Naperville, IL 60563.

Please feel free to contact Ajeet Charate regarding any questions or concerns you may have about this summer program, the UCLA curriculum or for other services that we offer. Please contact the center if you are interested and if you would like to register now or wait until Fall 2012

Summer Training Program for Children

The Illinois Centers for Fetal Alcohol Spectrum Disorders (ICFASD) is pleased to announce that 'Good Buddies' an empirically validated, 12 week curriculum based summer training program will be offered at the Naperville location. This will be for children (Age 6 -12) with an FASD or suspected of having an FASD. This children's program called is developed by Dr. O'Connor's team at UCLA and is an adaptation of their project Bruin Buddies that was funded by CDC. A randomized study was conducted and the results indicate that the treatment group showed an increased understanding regarding social behaviors, improved overall social skills, and a reduction in problem behaviors.

As we all know that children that are prenatally exposed to alcohol often display poor social skills, failure to consider the consequences of their actions, difficulty understanding social cues, indiscriminate social behavior and difficulty communicating in social contexts. Furthermore, the development of adequate and timely social skills is important because these children with poor social skills acquire negative reputations among their peers and experience social rejections and a risk of engaging in delinquent acts.

This intervention is a 12 week, parent-assisted children's social skills training program for children ages 6 - 12 who are experiencing difficulties making and keeping friends. The goal is to help your children become more accepted by peers and to make one or two new close friends. Parents attend separate, concurrent sessions to learn how to help their children make and keep friends.

Targeted Skills Include:
- How to talk to other children in order to learn about common mistakes
- How to find peers who like to do the same activities
- How to join a group of children at play at school or in the neighborhood
- How to be a good sport or a good winner in games with peers
- How to behave when another child comes to play
- How to handle and resist teasing and bullying
- How to be respectful to adults

This group will meet on Tuesdays from 4 - 6 pm. The group will start on June 5, 2012 and end on August 14, 2012. Week 11th and 12th (graduation) will be combined on August 14, 2012. If July 3, 2012 is a problem for most parents an alternate date will be discussed.

The cost for the 12 week program is $500 with $150 due at registration and the rest can be paid in three installments.

Location: 1260 Iroquois Ave. Suite 300. Naperville, IL 60563.

Please feel free to contact Ajeet Charate regarding any questions or concerns you may have about this summer program, the UCLA curriculum or for other services that we offer. Please be in contact with the center if you are interested and if you would like to register now or wait until Fall 2012.

Announcing the Fetal Alcohol Spectrum Disorders (FASD) “App”

CDC is announcing the launch of an FASD application (or “app”).  The app is a way for users to access the latest information related to alcohol use during pregnancy and FASDs directly from an iPhone, iPod Touch, or iPad. From women planning a pregnancy to health care providers to families and educators, this app helps users easily find and share the latest in the prevention, recognition, and treatment of FASDs. This application is a companion to CDC’s FASD website and is CDC’s first health condition-specific app! Check out these features:

• Alcohol consumption data by state

• Easy-to-read information on diagnosis and treatments for children with FASDs

• Individualized pages for different users – women, families, health care providers, educators, and partners

• Training and education resources

• Access to free materials on alcohol use during pregnancy and FASDs

• Information on what CDC is doing in this area

Download the FASD app  -- from your iPhone, iPod Touch, or iPad, go to the Apple App store and search for fetal alcohol spectrum disorders. You can also find it under CDC. To access it directly, visit: http://itunes.apple.com/us/app/fetal-alcohol-spectrum-disorders/id517058288?mt=8&ls=1