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This is the story of Taylor Allen, and how he was not properly diagnosed with FASD until he was in the 8th grade.  He spent most of his time, up till grade 8, feeling disconnected and very frustrated.  He was misdiagnosed with ADHD in the first grade.  It wasn't until he had to go through the First Offenders Program, for taking a pocket knife to school, that the counselor noticed signs of FASD and had Taylor tested.  Taylor's birth mom disclosed to the doctor that she drank while pregnant.  This information help in his diagnosis.  Taylor and his family later became involved with NOFAS and helping other families faced with FASD diagnosis.

What we did not understand is why the disclosure of alcohol use by the birth mom while pregnant was not shared.  If this information was given to the adoptive parents a correct diagnosis could have happened a lot sooner.

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Centers for Disease Control and Prevention

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Real Stories from People living with Fetal Alcohol Spectrum Disorders

Brenna

Heather and her husband, Jason, adopted Brenna and her three siblings from foster care. Weighing just 4 pounds and 13 ounces at birth, Brenna was so small that she came home wearing a doll's clothes.

For years, Brenna's parents struggled to get her accurately diagnosed. She had been slow to reach many milestones as an infant and participated in early childhood services for speech and physical therapy. She was small for her age throughout elementary school. Brenna also struggled academically. She had trouble staying on task, getting easily frustrated, and having outbursts and tantrums both in school and at home.

It was also difficult for her to understand concepts such as time, money, and organization. "When Brenna was in elementary school, she preferred to play with preschoolers rather than kids her own age," her mother, Heather, recalls. She also took everything literally. For instance, according to Heather when she said, "her classmates might be talking behind her back, Brenna had replied by saying that wasn't true, because she would hear them." It took Heather a bit to figure out that when Brenna said that she thought she would hear them, it was because she took it to mean they would be right behind her back talking.

Brenna's older sister was first of the children to be diagnosed with an FASD; Brenna was diagnosed later at the age of 12 years. Deciding if a child has an FASD takes both a physical and developmental evaluation. Since there is no biological test to diagnose FASDs, clinicians must assess a child's exposure history, behavioral and intellectual function, as well as look for neurological and physical features. Also, many other disorders have similar symptoms which must be ruled out. Among several other tests, Brenna's evaluation included an independent living/life skills test.

Benefits of a Diagnosis

According to Brenna's mother, "Getting the diagnosis helped understand where Brenna was coming from." Heather said that it helped them reframe the challenges they faced. It wasn't that Brenna was being defiant or wouldn't do things they asked of her, but rather that Brenna couldn't do it or lacked the skills and ability. They had to give Brenna the space and time to do it.

Heather also commented that, "It was helpful to get the diagnosis since it made available many resources in our area, including a support group. Being part of the support group has helped us learn more about FASDs. It is a relief to know there are other children with similar issues, who, for instance, must also be reminded of personal hygiene, even though they are almost in high school." The diagnosis also helps explain why Brenna could be disruptive in school, as the classes might be too hard for her to follow.

According to Heather, "Hearing about similar examples helped one not feel so alone. For instance, many of the children can't find their coats, shoes, homework, or favorite toy they just had. Or how when they are done with something, they just walk away, leaving it for you to pick up, clean up, or put away. What takes typical kids weeks to master, may take your child months or even years."

In addition to the support group, the diagnosis helped Brenna get access to local services and ensured the school system had the information they needed to best support her.

Increasing Awareness in Her Community

Brave and cheerful, Brenna has been instrumental in increasing awareness about FASDs in her school. After her diagnosis, she proudly wore her FASD T-shirt depicting a strong woman and handed out buttons and flyers about this condition. Her mother says, "I was a bit worried, wondering if she would be able to handle the comments or teasing, but Brenna did great!"

Brenna is a kind and happy teen. She loves helping people and cares about her friends and is always checking up on them. She also calls and checks on her grandmother daily.

Brenna enjoys playing the piano and being in the choir. She also recently took up junior varsity color guard and is looking forward to the competitions.

CDC would like to give a special thanks to Brenna and her family and to FASD United (formerly NOFAS) for sharing this story with us.

Taylor's Story

FASD United (formerly NOFAS) honored Taylor Allen, a 23-year-old young man living with an FASD and his parents, Mark and Cathy Allen, for their work with the FASD community in the Washington, DC area.

Taylor was diagnosed with an FASD in 8th grade. Before he was diagnosed, he struggled and had been misdiagnosed with attention-deficit/hyperactivity disorder (ADHD) in first grade. He lied, took things in school that did not belong to him, and recalls being disconnected and very frustrated. In the 8th grade, Taylor took a pocket knife to school and was suspended. Since it was a weapon, he had to go through the First Offender's Program and seek counseling. The counselor noticed a gap between action, reaction, and consequences, and had Taylor tested. Taylor was finally diagnosed with an FASD.

When Taylor was born, his birth mother had disclosed to the doctor that she was dealing with alcohol dependence and drank alcohol while pregnant with Taylor. This information from Taylor's parents was helpful to finally diagnose him with an FASD. After Taylor's diagnosis, the Allen family finally connected with FASD United (NOFAS at the time) and the Kennedy Krieger Institute to get help for Taylor.

Some of the behaviors Taylor has struggled with include difficulty maintaining attention, inability to plan and manage time, poor problem solving skills, inability to learn from consequences, social awkwardness, anxiety, and depression. Cathy Allen, Taylor's mother, shares that "Taylor has the outward appearance of any other 23-year-old since he is on the high functioning end of the spectrum, so his FASD behaviors are often misunderstood - causing Taylor extreme anxiety and depression."

After a great deal of struggle and perseverance from Taylor and his family, Taylor earned his associate's degree in electronics from a trade school. Taylor currently works as a lead custodian at an area airport. He enjoys playing and watching baseball, tinkering with computers, reading, and spending time with his girlfriend of two years. Taylor hopes to further his education and he is working toward living independently.

In His Own Words

"We were like so many other families out there. We were looking for guidance and trying to find counselors, practitioners. Through NOFAS, I was able to have a voice and speak out. By talking with others who are just at the beginning of their FASD journey, we are also healing and helping ourselves - by reminding us that we are not alone.

My mom talks to families that call her all the time. They are just trying to get information, to understand, to have a shoulder to cry on. I hear these conversations. They are so emotional that I walk by and listen in and I can't help but tear up because I was there along with my dad and my mom. And I know how it was like for my mom when she made that call to Kathy [Mitchell, Vice President, FASD United (formerly NOFAS)].

Now, NOFAS has empowered me. Several times a year they give me the podium to speak and tell my story. Getting up in front of a crowd to speak about FASD takes away the control that this disability had over me. I didn't know why I did a lot of things I used to do. But with this, I do know why I am doing it. For the past year, I have been leading a teen group with the help of Kathy [Mitchell, Vice President, FASD United (formerly NOFAS)] and my dad. We mostly talk about what it's like to be us, our day-to-day life, things we run into. We get into how bad it feels to be misunderstood, how we just wish people would understand us. But at the end of the day, no matter how bad, we are all smiles because we've got together and met people just like us.

I want to thank NOFAS for letting us be a small part of everything they do. We are going to keep talking, keep listening, and keep educating until everyone in the world knows that you cannot drink during pregnancy."

Sasha's Story

Alexander "Sasha" Cook was adopted in 1997 at the age of five. Now at 23, Sasha and his mother, Melissa, share his story in recognition of FASD Awareness Day.

As a child and young teen, Sasha faced numerous difficulties. These included learning problems, struggles with social relationships such as interacting with classmates, difficulty with team sports since rules were too abstract, and trouble handling everyday things in life. He still remembers that being with his fellow students was "no fun."

Sasha had many evaluations and was diagnosed with multiple disabilities. Knowing he was exposed to alcohol before birth is what helped his family and doctors best understand his challenges. Typical milestones that other children reached and took for granted seemed out of reach for Sasha.
Coaching, Adapting, and Modifying Expectations
Yet despite the odds and with support from his family, friends, church, and school community, Sasha has come a long way. Sasha has shown great potential, has many strengths, works hard, and clearly shows his resilience and depth of character. "We did the majority of behavior modification at home through structure and by understanding that this is not a moral disorder but a brain-based disorder," explains Melissa.

"It is constant coaching, adapting, and modifying expectations for them, realistically.... matching their potential with their gifts and strengths. As parents, we are their external brain and our children who have FASDs can be successful in a safe, structured, organized, and under-stimulated environment that recognizes and builds on their capabilities in order to help through the challenges."

Sasha with his mother, Melissa, and sister, Nadia, holding a proclamation signed by the Governor of Georgia in 2013 declaring September 9 as FASD Awareness Day.

Employee of the Month
Sasha successfully completed high school and has been gainfully employed by a large national grocery chain since 2009. Over the years, Sasha has been given additional responsibilities by his employer and was also recognized for his willingness to help others. Sasha proudly shares details on the numerous awards he has received and his growing customer service skills. "I was excited to be Employee of the Month in January 2013 and now I've been promoted to work the cash register. I like the people who I work with."
Active Member of the Community
Following in his mother's footsteps, Sasha is an active member of the community. He understands his disability and helps bring support to others. Recently, he participated and helped answer questions about FASDs at the 10th annual Seminar Series for "Critical Issues Facing Special Needs and at Risk Children" hosted by the Georgia Department of Behavioral Health and Developmental Disabilities, Suicide Prevention Program and The Supreme Court of Georgia's Committee on Justice for Children.

Sasha also provided information about FASD United's (formerly NOFAS) Georgia chapter. FASD United, a national nonprofit resource of the FASD community, is committed to preventing FASDs and supporting individuals and families living with FASDs.

As busy as Sasha stays, he still participates in fun activities including playing the piano, playing tennis with the family, and participating in a church bowling league. "Sasha is an excellent bowler and has crafted his talent for five years," continues Melissa. "As a mother raising children with FASDs, I have found that promoting physical activity through individualized sports such as bowling, tennis, and ping pong are important tools to enhance a child's daily functioning." Sasha is a very well-rounded young man and receives great family support in all his endeavors.

Melissa would like to thank the FASD Communities who have been especially helpful to her and her family in the past few years.

CDC would like to thank Sasha and Melissa for sharing their story.

Melissa's Story
This is the story of Melissa's experience with alcohol use during pregnancy and her journey to find the best possible care for her son.

"I drank at the beginning of my pregnancy; before I found out I was pregnant. My doctor told me that it was okay to continue to drink wine during pregnancy. He said I could have a glass of wine at night with dinner. He said it might even help me relax and improve circulation. Not only did I think drinking wine during pregnancy was okay, but I thought that it could be healthy. He never asked me if I had a drinking problem, or how many drinks I have a day, or if I binge drink. There wasn't any dialogue. I really wish that my doctor would have had more dialogue or asked me questions about drinking alcohol during pregnancy.

"When my son was born he looked perfect. He has amazing strengths. He's brilliant and he's an amazing musician. However, as he got older I realized that things just weren't quite right. He doesn't like how clothes feel. He wore the same outfit for almost a year. I finally found a pair of socks that he would wear. Then the company stopped making the sock. That wouldn't be a big deal for most people, but it was a terrifying moment for me. We went through about 25 packages of socks before we found a new brand that he would wear.

"On his first day of kindergarten, the school called me because he had turned over all of the chairs that people weren't sitting in, turned over items in the kitchen area in the classroom, and thrown his shoes at the teacher.

"Most kids will get mad when they have to end play dates or sleepovers. But instead of just getting mad, my son tried to jump out of the car the other day because he had to leave a sleepover.

"When I finally realized what was going on, it was a relief, and it was horrifying, and I felt guilty, and I felt ashamed. But mostly I felt relieved to know what was going on.

"If a pregnant woman said to me, 'I drink a little bit here and there and I was told it was okay,' I would tell her that she wouldn't if she had to live just one day with the way that I feel about myself, knowing how my son has been affected by my choices.

"I am angry that I was given wrong information about drinking during pregnancy. I want to tell as many people as I can about it. You never know how much alcohol during pregnancy is too much, so why take that chance?"

CDC would like to give a special thanks to Melissa and FASD United (formerly NOFAS) for sharing this story with us.

Frances's Story

"FASD has affected my life in many ways. I was born six weeks early and weighed three pounds, eleven ounces. As a child, I never knew what it was but it was hard for me to make friends and I found myself feeling afraid of others. School was very hard for me, especially math and English. I couldn't comprehend them. I completed high school and tried college, but it didn't go well. Then I got a job.

"Working was hard. I didn't know what I wanted to do and I went from job to job. I couldn't hold on to a job. It was hard for me because I developed anxiety, depression and an eating disorder. I still deal with that today. I see a therapist often and take medication. It's still a struggle.

"I do a lot of writing to express my feelings. It helps me. I also watch people very carefully to learn how to do certain things. I tend to read everything twice to comprehend what I am reading. For my anxiety, I avoid loud and crowded places. I always surround myself with people that I feel comfortable and safe with.

"I got involved with an organization called Al-Anon because I grew up in an alcoholic family. I do share my FASD story at the Al-Anon meetings. I always tell myself if there is one young woman who is thinking about having a child and who is drinking, if I share my story and that one person hears me, it's worth it.

"I want people to know that there is hope. I keep telling myself, if I can survive, others can too. FASD comes with a lot of shame and challenges. I always tell people to stop and think before taking that drink. Pregnant women should remember that they are not drinking alone."

CDC would like to thank Frances and FASD United (formerly NOFAS) for sharing this personal story.
Find more personal stories on the FASD United (formerly NOFAS) website. If you would like to share your personal story, please contact us at cdcinfo@cdc.gov

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Taylor was diagnosed with an FASD in 8th grade. Before he was diagnosed, he struggled and had been misdiagnosed with attention-deficit/hyperactivity disorder (ADHD) in first grade.

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This story is about a husband and wife who have complimenting disorders.  The wife has high functioning autism, and the husband has FAS, which they discovered after about 10 years of a rocky marriage when his mother shared with the wife she " drank heavily to the point of passing out every day" while she was pregnant with him.  He never displayed any of the physical features associated with the disorder but his behaviours did.  Together, they educated themselves and she came to the conclusion that her disorder was a perfect match to her husbands.  Her perfectionism and need for routines fit well with his need for stability and routine.  She also attributed some of his successes, like 13 years served in the US marines and Civilian Police officer, to her love and support.
This story makes one question how many other people are living with FASD and don't even know it and that with knowledge and support anyone with FASD can achieve great things!

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I met my husband over 10 years ago and while being with him I always felt there was something not right, I'm not sure how to describe it. We went through a lot from deceit and lies and when it would happen, it seemed to happen over and over again and he would seem like it didn't even matter. About 2 years ago my mother in law shared that she had drank heavily to the point of passing out every day while carrying my husband. Now, my husband has no features as someone with FAS so as I have been told it is VERY difficult to diagnosis someone with this disorder. So, my journey as well as my husbands was to find out more about FAS. After looking into it myself, which is pretty much the only way that there is, as there isn't much at the doctors that can help anyone with this disorder. Again, the best advice they could give us is to search the websites. You see, I have Asperger Disorder/High Functioning Autism. Anyone with this disorder wants to do everything right, but don't like lying or anything bad. With me being this way, it is a perfect world for someone for FAS, but made it a rocky ride for the 10 years, but today I am seeing it as a good thing I came into my husbands life because again, the type of person that is routin-esh and stable is someone that someone with FAS needs. I am not a big reader on books, but when I came across Jeff Noble's Facebook he decided to send me a book. I read the book in one sitting and felt so much better and said to myself what a wonderful thing I have done for my husband who is very successful in all he does today because of my love and support - he may have never achieved if I didn't stay in his life. He has achieved13 years in the United States Marines and when he got out he got a Civilian Police Officer job on a United States Marine Base now going on 5 years and getting ready to promote as a Sergeant - thanks to support from 3 Lieutenant referral letters. He also has an auto business, working on vehicles when he doesn't work as a police officer, that is very successful - which is one of the gifts that anyone that has FAS. He has been doing this since the beginning of the year. He also does more without reminders which I feel are because of routine. He wrote himself notes on the refrigerator to remind him to help, to never look back...not that it might not happen, but knowing what I know now, helps more then if I didn't. I am SO proud of my husband's accomplishments. Yes, each day you never know what will happen as you just try to love and support and I feel positive reinforcement is always good and know that they can't help what they have done. I feel this makes it so much easier than if I would have never known and we probably would never be together today if I didn't know as much as I do. With him, I feel true love that I have never felt with past relationships I have had - this says a whole lot.

Heidi
South Carolina, USA

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I met my husband over 10 years ago and while being with him I always felt there was something not right, I'm not sure how to describe it. We went through a lot from deceit and lies and when it would happen, it seemed to happen over and over again and he would seem like it didn't even matter.

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Children with Fetal Alcohol Spectrum Disorders (FASD)

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Diagnostic terms under the FASD umbrella are:Fetal Alcohol Syndrome (FAS)Partial Fetal Alcohol Syndrome (PFAS)Neurobehavioral Disorder Associated with Prenatal Alcohol Exposure (ND-PAE)Alcohol-Related Neurodevelopmental Disorder (ARND)

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Diagnostic terms under the FASD umbrella are:Fetal Alcohol Syndrome (FAS)Partial Fetal Alcohol Syndrome (PFAS)Neurobehavioral Disorder Associated with Prenatal Alcohol Exposure (ND-PAE)Alcohol-Related Neurodevelopmental Disorder (ARND)

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nofas.org

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Identifying Individuals with Prenatal Alcohol Exposure
FASD is known as a "hidden disability" because most individuals affected by FASD are not diagnosed until adolescence, adulthood, if at all. School-aged children with fetal alcohol-related problems are usually only identified when they are referred for a learning disability or an attention deficit disorder. If clinicians can identify FASD early, intervention approaches can minimize the potential impact and prevent secondary disabilities.

Clinicians who see young children for routine check-ups have a special opportunity to identify children exposed to alcohol. The physician may want to ask the parent or caregiver bringing the child into the clinic about alcohol exposure during pregnancy. It is important to frame these questions in the context of the overall health of the child.

Impairments associated with FASD are often a reflection of underlying structural changes in the brain, as evidenced above by changes in the corpus callosum. An MRI might also reveal decrease in brain size, damage to the basal ganglia, or reduced size of the cerebellum.

If a birth mother brings in a child displaying symptoms of FASD, clinicians may want to start by asking about her current alcohol use before asking about alcohol use during pregnancy. Women are more willing to talk about this issue when physicians approach them in a caring, nonjudgmental way.

If a father brings in a child displaying symptoms of FASD, clinicians may want to ask about the mother's use of alcohol currently as well as during the pregnancy. It is important to tell the father that these questions are routine and asked in the best interest of the child. The father may have helpful insights regarding the birth mother's alcohol use.

If a foster parent or other caregiver brings in a child displaying symptoms of FASD, clinicians may want to ask if the caregiver has any knowledge of the birth mother's alcohol use during pregnancy. It is always important to be tactful and sensitive when asking for this information. Again, stress that this information is for the child to receive quality health care and it is routine to ask these questions.

Go here for information on ICD Coding Related to FASD and Effects of Prenatal Alcohol Exposure

Video Interview of Adoptive Mother on Getting an FASD Diagnosis
NOFAS produced this moving video interview with Lyn, an adoptive mother of a person with FASD. Lyn talks about her journey to get an FASD diagnosis for her son.Watch the video here.

Criteria for Diagnosis

FASD is an umbrella term referring to the diagnosable conditions associated with prenatal alcohol exposure, including Fetal Alcohol Syndrome (FAS), partial Fetal Alcohol Syndrome (pFAS), and Neurobehavioral Disorder associated with Prenatal Alcohol Exposure (ND-PAE).

In the World Health Organization's (WHO) International Statistical Classification of Diseases (ICD-9), a system of diagnostic codes for classifying diseases and health conditions used worldwide in medical billing and coding to describe diseases, injuries, symptoms and conditions, FAS is indicated by code 760.71. A doctor in the United States would use this code to specify the diagnosis of FAS on a reimbursement claim. The ICD-9 code for FAS is a subset of code 760.7, noxious influences affecting fetus or newborn via placenta or breast milk. On October 2014, ICD-10 will replace ICD-9 in the U.S. The ICD-10 code for FAS is 86.0

The American Academy of Pediatrics FASD Program

The Fetal Alcohol Spectrum Disorders (FASD) Toolkit from the American Academy of Pediatrics (AAP) was developed to raise awareness, promote surveillance and screening, and ensure that all affected children receive appropriate and timely interventions.

Visit the AAP Toolkit website here for more information: http://bit.ly/1QoqnYZ

Fetal Alcohol Syndrome (FAS)
A diagnosis of FAS requires the presence of all three of the following findings:

1. Documentation of all three facial abnormalities, 1) smooth philtrum (the vertical groove between the upper lip and the nose), 2) thin vermillion border (the border between the lip and the adjacent normal skin), and 3) small palpebral fissures (the space between the corners of the eye opening);

2. Documentation of growth deficits

3. Documentation of central nervous system abnormalities (structural, neurological or functional, or combination thereof).

Confirmed prenatal alcohol use can strengthen the evidence for diagnosis, but it is not necessary in the presence of all the previous findings. Confirmed absence of alcohol exposure would rule out the FAS diagnosis.

[Fetal Alcohol Syndrome: Guidelines for Referral and Diagnosis, National Center on Birth Defects and Developmental Disabilities, Centers for Disease Control and Prevention]

Partial Fetal Alcohol Syndrome (pFAS)
A diagnosis of pFAS requires:

1. A confirmed history of prenatal alcohol exposure;

2. Central nervous system abnormalities at the same level as FAS.

Individuals with pFAS may or may not have growth deficiency or one or more of the facial abnormalities associated with FAS. Individuals with pFAS have the same functional disabilities but "look" less like an individual with FAS.
Neurobehavioral Disorder associated with Prenatal Alcohol Exposure (ND-PAE)
The criteria set for diagnosing ND-PAE below is listed in Section III of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5). Section III consists of conditions on which future research is encouraged. It is hoped that such research will allow the field to better understand these conditions and will inform decisions about possible placement in forthcoming editions of DSM. The DSM-5 Task Force subjected the proposed ND-PAE criteria set to a careful empirical review and invited wide commentary from the field as well as from the general public. The Task Force determined that there was insufficient evidence to warrant inclusion of ND-PAE as an official mental disorder diagnosis in Section II. The ND-PAE criteria set is not intended for clinical use; only the criteria sets and disorders in Section II of DSM-5 are officially recognized and can be used for clinical purposes.

Although ND-PAE is not listed in Section II of DSM-5, clinicians may evaluate a patient for ND-PAE by recording "other specified neurodevelopmental disorder" followed by the specific reason, neurobehavioral disorder associated with prenatal alcohol exposure, and using code 315.8.

Proposed DSM-5 Criteria for Neurobehavioral Disorder associated with Prenatal Alcohol Exposure (ND-PAE)
A. Exposed to alcohol at any time during gestation, including prior to pregnancy recognition, and the exposure level was more than minimal (i.e., more than 13 drinks in any one month, with no more than two drinks on any drinking occasion). Confirmation of gestational exposure to alcohol may be obtained from any of the following sources: maternal self report of alcohol use in pregnancy, collateral reports, or medical or other records.

B. Impaired neurocognitive functioning as manifested by one or more of the following:
1. Impairment in global intellect
2. Impairment in executive functioning
3. Impairment in learning
4. Memory impairment
5. Impairment in visual-spatial reasoning

C. Impaired self-regulation as manifested by one or more of the following:
1. Mood or behavior
2. Attention
3. Impulse control

D. Impairments in adaptive functioning in two or more of the following, including at least either (1) or (2):
1. Language
2. Social communication and interaction
3. Daily living skills
4. Motor skills

E. The onset of the disturbance (symptoms in Criteria B, C, and D) is before 18 years of age.

F. The disturbance causes clinically significant distress or impairment in social, academic, occupational, or other important areas of functioning.

G. The disturbance is not better explained by the direct physiological effects associated with postnatal use of a substance (e.g., medication, alcohol or other drugs), another medical condition (e.g., traumatic brain injury, delirium, dementia), another known teratogen (e.g., Fetal Hydantoin syndrome), a genetic condition (e.g., Williams syndrome, Down syndrome, Cornelia de Lange syndrome), or environmental neglect.

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Identifying Individuals with Prenatal Alcohol Exposure FASD is known as a "hidden disability" because most individuals affected by FASD are not diagnosed until adolescence, adulthood, if at all. School-aged children with fetal alcohol-related problems are usually only identified when they are referred for a learning disability or an attention deficit disorder.

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What is FASD?FASD is a brain injury that can occur when an unborn baby is exposed to alcohol.  It’s a lifelong disorder with effects that include physical, mental, behavioural and learning disabilities. These can vary from mild to severe. FASD is the leading known cause of preventable developmental disability in Canada. The number of people who have FASD is not known in Canada nor anywhere else in the world. This is because FASD is difficult to diagnose and also because it often goes undetected.However, based on studies conducted between 1985 and 1997, an estimated 1% of Canadians (360,000 people) have FASD. More recent studies from the US and other Western European countries of first grade students estimate that between 2 to 5% have FASD. 

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What is FASD?FASD is a brain injury that can occur when an unborn baby is exposed to alcohol.  It’s a lifelong disorder with effects that include physical, mental, behavioural and learning disabilities. These can vary from mild to severe. FASD is the leading known cause of preventable developmental disability in Canada. The number of people who have FASD is not known in Canada nor anywhere else in the world. This is because FASD is difficult to diagnose and also because it often goes undetected.However, based on studies conducted between 1985 and 1997, an estimated 1% of Canadians (360,000 people) have FASD. More recent studies from the US and other Western European countries of first grade students estimate that between 2 to 5% have FASD. 

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About fetal alcohol spectrum disorder (FASD) - Canada.ca

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TED TALK BY FOSTER MOTHER OF FASD CHILDREN

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TED TALK BY FOSTER MOTHER OF FASD CHILDREN

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This video is about a woman who has adopted twelve children affected prenatally by drugs and alcohol.   She focuses on her speech her daughter Aryanna, who was adopted at three months old.   She shares her experiences of caring for a child with FASD and the challenges associated with it, such as the constant trips to the hospital, the pain management and the high costs of medication and food, she pays $60,000 per month to care for her daughter. The compelling message she shares with her audience is that "there is hope" and we need to be able to get the support out to the moms so they can receive treatment for their addictions and to educate society more. This is a 100% preventable disorder that has reached epidemic proportions and she pleas to anyone planning on becoming a mother to think about the consequences before consuming any drugs or alcohol when pregnant.

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Fetal alcohol spectrum disorder impacts you, but you don’t know it | Nora Boesem | TEDxRapidCity

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Attention Difficulties | POPFASD - Fetal Alcohol Spectrum Disorder (FASD) Resource for Educators

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Provides, from a student's perspective, some strategies that may help a student who has attention difficulties. This video features the drawings of Nathan Fehr.

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Diagnosis

Diagnosis is undertaken by a multidisciplinary team and includes:

a full medical assessment, including:

family history

differential diagnosis

physical examination

maternal alcohol history

a neurodevelopment assessment in 10 brain domains

the measurement of sentinel facial features, including the:

philtrum

upper lip

palpebral fissure length

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All of our specialized services for families are funded by the Ministry of Children and Family Development. We provide various kinds of family services in the communities of Williams Lake, 100 Mile House, Quesnel, Prince George, Kamloops and Cranbrook. Participating families are referred by MCFD and in some cases through self-referral or referral by other community partners.

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From the Children's Hospital, Health Sciences Centre, Departments of Pediatrics and Child Health and Biochemistry and Medical Genetics, University of Manitoba, Winnipeg, Man. (Chudley); the Department of Educational and Counselling Psychology and Special Education, University of British Columbia; Asante Centre for Fetal Alcohol Syndrome, Maple Ridge, B.C. (Conry); the Department of Obstetrics and Gynecology, University of Ottawa, Ottawa, Ont. (Cook); the Department of Pediatrics, University of British Columbia, BC Children's Hospital, Vancouver, B.C. (Loock); the Provincial Medical Genetics Program; the Department of Pediatrics, Memorial University of Newfoundland, St. John's, Nfld. (Rosales); and the Department of Pediatrics, Georges Dumont Hospital, Moncton, N.B. (LeBlanc).

Correspondence to:
Dr. Jocelynn L. Cook, FASD Team, Public Health Agency of Canada, Division of Childhood and Adolescence, Jeanne Mance Bldg. 9th flr, Tunney's Pasture, Address Locator 1909C2, Ottawa ON K1A 0K9; jocelynn{at}primus.ca

Abstract

THE DIAGNOSIS OF FETAL ALCOHOL SPECTRUM DISORDER (FASD) is complex and guidelines are warranted. A subcommittee of the Public Health Agency of Canada's National Advisory Committee on Fetal Alcohol Spectrum Disorder reviewed, analysed and integrated current approaches to diagnosis to reach agreement on a standard in Canada. The purpose of this paper is to review and clarify the use of current diagnostic systems and make recommendations on their application for diagnosis of FASD-related disabilities in people of all ages. The guidelines are based on widespread consultation of expert practitioners and partners in the field. The guidelines have been organized into 7 categories: screening and referral; the physical examination and differential diagnosis; the neurobehavioural assessment; and treatment and follow-up; maternal alcohol history in pregnancy; diagnostic criteria for fetal alcohol syndrome (FAS), partial FAS and alcohol-related neurodevelopmental disorder; and harmonization of Institute of Medicine and 4-Digit Diagnostic Code approaches. The diagnosis requires a comprehensive history and physical and neurobehavioural assessments; a multidisciplinary approach is necessary. These are the first Canadian guidelines for the diagnosis of FAS and its related disabilities, developed by broad-based consultation among experts in diagnosis.

In this document, we discuss the diagnostic approach to disabilities associated with prenatal alcohol exposure. Fetal alcohol spectrum disorder (FASD), along with its most visible presentation, fetal alcohol syndrome (FAS), is a serious health and social concern to Canadians. FASD is an umbrella term describing the range of effects that can occur in an individual whose mother drank alcohol during pregnancy. These effects may include physical, mental, behavioural and learning disabilities with lifelong implications. The term FASD is not intended for use as a clinical diagnosis.

FASD is the result of maternal alcohol consumption during pregnancy and has implications for the affected person, the mother, the family and the community. Since FAS was first described in 1973, 1 it has become apparent that it is complex; affected people exhibit a wide range of expression, from severe growth restriction, intellectual disability, birth defects and characteristic dysmorphic facial features to normal growth, facial features and intellectual abilities, but with lifelong deficits in several domains of brain function. FASD requires a medical diagnosis in the context of a multidisciplinary assessment. FASD itself is not a diagnostic term. The purpose of this paper is to review and clarify the use of the current diagnostic systems and make recommendations on their application for diagnosis of FASD-related disabilities in people of all ages. For a description of the characteristics and the natural course of FASD, consult some of the broader reviews. 2,3,4,5,6,7

Epidemiology of FASD

The prevalence of FAS in the United States has been reported as 1-3 per 1000 live births and the rate of FASD as 9.1 per 1000 live births. 8,9,10,11 However, diagnosis may often be delayed or missed entirely. 2

There are no national statistics on the rates of FASD in Canada, although studies have estimated its prevalence in small populations. In an isolated Aboriginal community in British Columbia, FASD prevalence was 190 per 1000 live births. 12 In northeastern Manitoba, an incidence of about 7.2 per 1000 live births was found. 13 In another Manitoba study in a First Nations community, 14 the prevalence of FAS and partial FAS was estimated to be 55-101 per 1000. In their survey, Asante and Nelms-Matzke 15 estimated the rate of FAS and related effects at 46 per 1000 native Canadian children in the Yukon and 25 per 1000 in northern British Columbia. Based on referrals to a diagnostic clinic in Saskatchewan, the rate of FAS was estimated at 0.589 per 1000 live births in 1988-1992 and 0.515 per 1000 in 1973-1977. 16 However, none of these data should be generalized to other communities, other populations or the Canadian population in general.

Risk factors

A common misconception is that FASD is associated with ethnocultural background. However, the data suggest that risk factors for prenatal alcohol exposure include higher maternal age and lower education level, prenatal exposure to cocaine and smoking, custody changes, lower socioeconomic status and paternal drinking and drug use at the time of pregnancy; 17 and reduced access to prenatal and postnatal care and services, inadequate nutrition and a poor developmental environment (e.g., stress, abuse, neglect). 18

In a 5-year follow-up study of birth mothers of children with full FAS, Astley and colleagues 19 found that these women came from diverse racial, educational and economic backgrounds. They were often challenged by untreated or under-treated mental health concerns, they were socially isolated, they were victims of abuse and they had histories of severe childhood sexual abuse.

Because there are no large-scale studies of risk factors and because risks are interrelated and could be different for different populations, it is difficult to provide accurate figures for relative risk. However, the most important risk factor for FASD is related to high blood-alcohol concentration: the timing of exposure during fetal development, the pattern of consumption, i.e., binge drinking (4 or more drinks per occasion) and the frequency of use. Although there seems to be no definite threshold of exposure, there appears to be a dose-response relation. 17,20,21

Importance of early diagnosis

An early diagnosis is essential to allow access to interventions and resources that may mitigate the development of subsequent "secondary disabilities" (e.g., unemployment, mental health problems, trouble with the law, inappropriate sexual behaviour, disrupted school experience) among affected people. 22 Furthermore, an early diagnosis will also allow appropriate intervention, counselling and treatment for the mother and may prevent the birth of affected children in the future. 23 It may also prompt caregivers to seek diagnosis and support for previously undiagnosed siblings. A review of medical and behavioural management of those with FASD can be found in other sources. 3,24 Astley and Clarren 25 suggest that accurate and timely diagnosis is essential to improve outcome, as misclassification leads to inappropriate patient care, increased risk of secondary disabilities, missed opportunities for prevention and inaccurate estimates of incidence and prevalence. Together, these inaccuracies could hinder efforts to allocate sufficient social and health care services to the vulnerable populations and preclude accurate assessment of primary prevention efforts.

Because of limited capacity and expertise and the need to involve several professionals in a comprehensive multidisciplinary diagnostic evaluation, only a fraction of those affected currently receive a diagnosis. Results 26 from the Canadian national survey regarding knowledge and attitudes of health professionals suggest that standardized guidelines for diagnosis and further professional education and training are needed for practitioners to participate in diagnosis. In response to these concerns, Health Canada's National Advisory Committee on FASD, along with experts and practitioners in FAS diagnosis and treatment, present the following guidelines for diagnosis.

Process of guideline development

These guidelines are the result of more than 10 face-to-face consultations with Canadian and American experts in the diagnosis of FAS and its related disabilities ( Appendix 1). Many of the participants are currently providing diagnostic services across Canada. Review and feedback were provided by a diverse group of individuals; professional organizations and societies; and provincial, territorial and federal levels of government. Guidelines are presented in 6 areas related to the diagnostic process: 1. screening and referral; 2. the physical examination and differential diagnosis; 3. neurobehavioural assessment; 4. treatment and follow-up; 5. maternal alcohol history in pregnancy; and 6. diagnostic criteria for FAS, partial FAS and alcohol-related neurodevelopmental disorder. We also include recommendations for harmonization of the 2 main approaches to diagnosis.

There are multiple approaches to diagnosis, and the working group sought to integrate these to achieve consistent diagnoses across Canada. Current knowledge of the complexity of the disabilities associated with prenatal alcohol exposure dictates that a comprehensive, multidisciplinary assessment is necessary to make an accurate diagnosis and provide recommendations for management. We are recommending such a multidisciplinary approach. This approach will also allow for collection of Canadian data for estimating incidence and prevalence of FASD. This information is essential to identify the need for and the development of appropriate prevention and intervention programs and services.

Background and terminology for the diagnosis of FAS

The first recognition of a variety of birth defects and developmental disabilities in offspring born to alcoholic parents is attributed to Lemoine and colleagues. 27 A specific pattern of birth defects following maternal alcohol exposure was described in the United States. 1,28 The specific pattern, referred to as FAS, consists of facial abnormalities (smooth philtrum [the space between the upper lip and the nose], thin vermilion border [the exposed mucosal, or red part, of the upper lip], short palpebral fissures), impaired prenatal or postnatal growth (or both) and central nervous system or neurobehavioural disorders. Alcohol probably acts through multiple mechanisms and a range of disabilities has been observed in the absence of dysmorphic features reflecting varying degrees of damage during fetal development; undoubtedly, timing and degree of exposure are important variables that contribute to the variation. Thus, the term "suspected fetal alcohol effects" (FAE) was created. 29 These "effects" were further delineated by the United States' Institute of Medicine (IOM), which published recommendations in 1996 for diagnosis of FAS in consultation with a panel of experts. 4 The diagnostic categories presented were: FAS with and without a confirmed history of alcohol exposure, partial FAS, alcohol-related birth defects (ARBD), and alcohol-related neurodevelopmental disorder (ARND) ( Table 1).

In the late 1990s, another diagnostic strategy was developed by Astley and Clarren. 25,30They created a 4-Digit Diagnostic Code using data from the Washington State Fetal Alcohol Syndrome Diagnostic and Prevention Network of clinics. The system uses quantitative, objective measurement scales and specific case definitions. The 4 digits in the code reflect the magnitude of expression or severity of the 4 key diagnostic features of FAS in the following order: growth deficiency; the FAS facial phenotype; central nervous system damage or dysfunction; gestational exposure to alcohol. The magnitude of expression of each feature is ranked independently on a 4-point Likert scale with 1 reflecting complete absence of the feature and 4 reflecting its extreme expression. The 4-Digit Diagnostic Code is now being used for diagnosis, screening and surveillance in clinics throughout the United States and Canada. Terminology from Astley's 2004 revision of the 4-Digit Diagnostic Code are used in this article.*

Although the approaches are different, the underlying, fundamental criteria of the IOM and the 4-Digit Diagnostic Code are similar. Some clinics are choosing to integrate the diagnostic tools and precision reflected in the 4-Digit Diagnostic Code with the diagnostic categories and language recommended by the IOM committee. Although both IOM criteria and the 4-Digit Diagnostic Code have been published, many clinicians still use the less desirable and potentially misleading gestalt approach ( Table 2).

The diagnostic process

The diagnostic process consists of screening and referral, the physical examination and differential diagnosis, the neurobehavioural assessment and treatment and follow-up. Because of the complexity and the range of expression of dysfunction related to prenatal alcohol exposure, a multidisciplinary team is essential for an accurate and comprehensive diagnosis and treatment recommendations. The assessment process begins with recognition of the need for diagnosis and ends with implementation of appropriate recommendations. The multidisciplinary diagnostic team can be geographic, regional or virtual; it can also accept referrals from distant communities and carry out an evaluation using telemedicine.

The core team may vary according to the specific context, but ideally it should consist of the following professionals with appropriate qualifications, training and experience in their particular discipline:

Coordinator for case management (e.g., nurse, social worker).

Physician specifically trained in FASD diagnosis.

Psychologist.

Occupational therapist.

Speech-language pathologist.

Additional members may include addiction counsellors, childcare workers, cultural interpreters, mental health workers, parents or caregivers, probation officers, psychiatrists, teachers, vocational counselors, nurses, geneticists or dysmorphologists, neuropsychologists, family therapists.

Comments

Clearly, funding for development, training and maintenance of multidisciplinary diagnostic teams is necessary so that major centres will have the expertise and capacity to serve their communities. To optimize the outcome of the diagnosis, the community and the family must be prepared, ready to participate in, and be in agreement with the diagnostic assessment. The diagnostic process should be sensitive to the family's and the caregiver's needs. In each community, referrals must be evaluated and their level of priority established. The family and guardian must be in agreement on the purpose of diagnosis. They must be made aware of the potential psychosocial consequences of a diagnosis of FASD (e.g., increasing a sense of guilt and anger, especially with the birth mother, or potential stigmatization of the child). The family or guardian will likely need help to move confidently through the diagnostic process. This help might include some preparatory education concerning FASD and linking them with community supports and resources.

Information from multiple sources (e.g., school records, hospital records, social services, previous assessments) should be obtained; this might involve meetings with relevant professionals who know the patient (e.g., teachers, physicians, social workers, psychologists). Other relevant documentation would include birth and pregnancy records, medical and hospital records, adoption records, academic records, achievement tests, developmental assessments, psychological and psychometric assessments, legal reports and documentation of the family history.

The comprehensive assessment by the diagnostic team provides important information about the individual's unique needs and allows interventions to be tailored to his or her strengths and challenges. The post-diagnostic report should state the basis for the diagnosis by including the history of alcohol use, the physical criteria and the psychological data that support it.

Multidisciplinary teams work with community partners and resources to develop and implement management plans to maximize the potential of the affected individual. Following assessment, a report containing recommendations should be made available to caregivers, educators, and biological families, as well as other appropriate individuals who work with the child (i.e., daycare workers, early intervention workers, social workers, etc). The team findings should be discussed with the guardian. Older children who have the cognitive ability should have the opportunity to learn about their diagnosis from the team. The team might also take on the responsibility for facilitating and providing follow-up with the family and community resources regarding outcomes of the recommendations. Ultimately, the diagnostic process will result in concrete management recommendations to improve the lives of the affected individuals, their families and the communities.

Canada is a large country with vast distances between communities, some of which are remote and isolated. Specialists providing consultation to remote areas require specialized training in FASD assessment and need to link with centres that have multidisciplinary teams to assist in the diagnostic process. A number of tools may be useful for distant diagnosis. More frequent use of telemedicine, for example, will allow assessment of children in distant communities. 31Other examples include the use of digital photographs 32,33 and 3-D laser surface scanning 34,35 sent electronically to teams in larger centres.

We recognize that there is currently a limited capacity even in some large communities in Canada to provide a multidisciplinary team-based approach to FAS diagnosis. Professionals should make the best use of available resources and expertise to provide an accurate assessment and treatment plan for affected individuals and their families, recognizing the key role of psychology.

1. Screening and referral

Recommendations

1. All pregnant and post-partum women should be screened for alcohol use with validated screening tools (i.e., T-ACE, TWEAK) by relevant health care providers. Women at risk for heavy alcohol use should receive early brief intervention (i.e., counselling).

2. Abstinence should be recommended to all women during pregnancy, as the mother's continued drinking during pregnancy will put the fetus at risk for effects related to prenatal alcohol exposure.

3. Referral of individuals for a possible FASD-related diagnosis should be made in the following situations:

Presence of 3 characteristic facial features (short palpebral fissures, smooth or flattened philtrum, thin vermilion border).

Evidence of significant prenatal exposure to alcohol at levels known to be associated with physical or developmental effects, or both.

Presence of 1 or more facial features with growth deficits plus known or probable significant prenatal alcohol exposure.

Presence of 1 or more facial features with 1 or more central nervous system deficits plus known or probable significant prenatal alcohol exposure.

Presence of 1 or more facial features with pre- or postnatal growth deficits, or both (at the 10th percentile or below [1.5 standard deviations below the mean]) and 1 or more central nervous system deficits plus known or probable significant prenatal alcohol exposure.

4. Individuals with learning or behavioural difficulties, or both, without physical or dysmorphic features and without known or likely prenatal alcohol exposure should be assessed by appropriate professionals or specialty clinics (i.e., developmental pediatrics, clinical genetics, psychiatry, psychology) to identify and treat their problems.

Screening should not be equated with diagnosis. We know that in some places with no diagnostic services, screening tools have been inappropriately used in lieu of a proper diagnosis. One purpose of screening is to identify and refer pregnant women who may be at risk for an alcohol use disorder and who may place their child at risk for FASD. Several alcohol screening tools have been found to be effective in identifying problem drinking in a primary care setting (e.g., TWEAK, T-ACE, CAGE, AUDIT, S-MAST, B-MAST). 2,36,37,38

There is moderate evidence 37,38 to support the use of T-ACE and TWEAK to identify women who would benefit from intervention for alcohol use during pregnancy. If the woman cannot abstain, she should receive support and be referred to appropriate counselling and treatment. Stopping drinking at any point during the pregnancy will improve the outcome for the baby. Research is being carried out to develop gender and culturally appropriate instruments for the screening of all women during their child-bearing years. 38

The purpose of screening individuals at risk for the effects of prenatal alcohol exposure is to determine whether a pattern of learning and behavioural problems may be related to prenatal alcohol exposure. The screening could be conducted through the education system, the mental health system, the judicial system or social services. The purpose of screening should be to facilitate referral to a diagnostic clinic and highlight the need for referral and support for the birth mother.

The FAS Diagnostic and Prevention Network has had encouraging results in applying the FAS facial photographic screening tool in foster children and school-age children populations. 39 However, in the wide array of FASDs, facial dysmorphology is often absent and, in the final analysis, has little importance compared with the impact of prenatal alcohol exposure on brain function. However, it is important to note that the facial phenotype is a midline defect that is the most sensitive and specific marker for alcohol-related brain damage.

All those suspected of having brain dysfunction should be referred to an appropriate professional or clinic for assessment (i.e., developmental pediatrics, clinical genetics, psychiatry, psychology). Because of the specificity of FASD clinics in addressing issues related to prenatal alcohol exposure, those with no prenatal alcohol exposure should be referred to an appropriate professional or clinic for assessment, treatment and follow-up.

2. The physical examination and differential diagnosis

The purpose of dysmorphology assessment is to identify those with features related to prenatal alcohol exposure and also to identify children with dysmorphic features due to other causes. Occasionally, children with prenatal alcohol effects may have another genetic syndrome as a comorbidity. When in doubt and if feasible, a genetic dysmorphology assesment is advisable.

A general physical and neurologic examination, including appropriate measurements of growth and head size, assessment of characteristic findings and documentation of anomalies (e.g., cleft palate, congenital heart defects, epicanthic folds, high arched palate, poorly aligned or abnormal teeth, hypertelorism, micrognathia, abnormal hair patterning, abnormal palmar creases, skin lesions) is required to exclude the presence of other genetic disorders or multifactorial disorders that could lead to features mimicking FAS or partial FAS ( Table 3).

Some children will have significant neurologic deficits, such as deafness, blindness or seizures, and these should be assessed and documented as essential components of the child's profile. These features do not discriminate alcohol-exposed from unexposed children. The face of FAS is the result of a specific effect of ethanol teratogenesis altering growth of the midface and brain. Those exposed to other embryotoxic agents may display a similar, but not identical, phenotypic facial development, impaired growth, a higher frequency of anomalies and developmental and behavioural abnormalities (for a review, see Chudley and Longstaffe 24). However, because FAS facial criteria have been restricted to short palpebral fissures, smooth philtrum and thin upper lip, there is far less overlap with the facial phenotypes associated with other syndromes. Knowledge of exposure history will decrease the possibility of misdiagnosing FASD.

Children may be found to need other medical assessments to address co-occurring issues. For example, sleep disturbance is common with prenatal alcohol exposure and medical problems related to obstructive sleep apnea may have been overlooked previously. Atypical seizures may also be present and endocrinopathies may exist as a comorbid reason for growth deficiency. These individuals should be assessed by appropriate health professionals.

2a. Growth

Recommendations

1. Growth should be monitored to detect deficiency. Presence of pre- or post-natal growth deficiency, defined as height or weight at or below the 10th percentile (1.5 standard deviations below the mean) or a disproportionately low weight-to-height ratio (at or below the 10th percentile) using appropriate norms. To determine that a child is growth deficient requires taking into consideration confounding variables such as parental size, genetic potential and associated conditions (e.g., gestational diabetes, nutritional status, illness).

2b. Facial features

Recommendations

1. The 3 characteristic facial features that discriminate individuals with and without FAS are:

Short palpebral fissures, at or below the 3rd percentile (2 standard deviations below the mean).

Smooth or flattened philtrum, 4 or 5 on the 5-point Likert scale of the lip-philtrum guide. 25,39

Thin vermilion border of the upper lip, 4 or 5 on the 5-point Likert scale of the lip-philtrum guide.

2. Associated physical features (abnormalities such as midface hypoplasia, micrognathia, abnormal position or formation of the ears, high arched palate, hypertelorism, epicanthic folds, limb and palmar crease abnormalities and short-upturned nose) should be recorded but do not contribute to establishing the diagnosis.

3. Facial features should be measured in all age groups. If a patient's facial features change with age, the diagnosis of the facial features should be based on the point in time when the features were most severely expressed. When diagnosing adults, it can be helpful to view childhood photographs.

3. Neurobehavioural assessment

Recommendations

1. The following domains should be assessed:

1. Hard and soft neurologic signs (including sensory-motor signs).

2. Brain structure (occipitofrontal circumference, magnetic resonance imaging, etc.).

3. Cognition (IQ).

4. Communication: receptive and expressive.

5. Academic achievement.

6. Executive functioning and abstract reasoning.

7. Attention deficit/hyperactivity.

8. Adaptive behaviour, social skills, social communication.

2. The assessment should include and compare basic and complex tasks in each domain, as appropriate.

3. The domains should be assessed as though they were independent entities, but where there is overlap experienced clinical judgment is required to decide how many domains are affected.

4. A domain is considered "impaired" when on a standardized measure:

1. Scores are 2 standard deviations or more below the mean, or

2. There is a discrepancy of at least 1 standard deviation between subdomains. For example:

i. Verbal v. non-verbal ability on standard IQ tests,

ii. Expressive v. receptive language,

iii. Verbal v. visual memory, or

3. There is a discrepancy of at least 1.5-2 standard deviations among subtests on a measure, taking into account the reliability of the specific measure and normal variability in the population.

5. In areas where standardized measurements are not available, a clinical judgment of "significant dysfunction" is made, taking into consideration that important variables, including the child's age, mental health factors, socioeconomic factors and disrupted family or home environment (e.g., multiple foster placements, history of abuse and neglect), may affect development but do not indicate brain damage.

6. Evidence of impairment in 3 domains is necessary for a diagnosis, but a comprehensive assessment requires that each domain be assessed to identify strengths and weaknesses.

7. The diagnosis should be deferred for some at-risk children (e.g., preschool-age) who have been exposed to alcohol but may not yet demonstrate measurable deficits in the brain domains or may be too young to be tested in all the domains. However, developmental assessment should identify areas for early intervention.

Examples of tests that are most widely used to assess the domains and their criteria are provided in Appendix 3.

4. Treatment and follow-up

Recommendations

1. Education of the patient and family members on features of FASD is crucial. The potential psychosocial tensions that might be expected to develop within the family as a result of the diagnosis should also be discussed. This must be done in a culturally sensitive manner using appropriate language.

2. A member of the diagnostic team should follow-up outcomes of diagnostic assessments and treatment plans within a reasonable length of time to assure that the recommendations have been addressed.

3. Diagnosed individuals and their families should be linked to resources and services that will improve outcome. However, where services are limited in the community, an individual should not be denied an assessment for diagnosis and treatment. Often the diagnosis in the individual is the impetus that leads to the development of resources.

5. Maternal alcohol history in pregnancy

Recommendations

1. Prenatal alcohol exposure requires confirmation of alcohol consumption by the mother during the index pregnancy based on reliable clinical observation, self-report, reports by a reliable source or medical records documenting positive blood alcohol, alcohol treatment or other social, legal or medical problems related to drinking during the pregnancy.

2. The number and type(s) of alcoholic beverages consumed (dose), the pattern of drinking and the frequency of drinking should all be documented if available.

3. Hearsay, lifestyle, other drug use or history of alcohol exposure in previous pregnancies cannot, in isolation, be informative of drinking patterns in the index pregnancy. However, co-occurring disorders, significant psychosocial stressors and prenatal exposure to other substances (e.g., smoking, licit or illicit drugs) in the index and previous pregnancies should still be recorded, based on known interactive effects of these variables on the severity of pregnancy outcomes for both the mother and her offspring.

Gathering reliable information about maternal drinking is key to establishing an accurate diagnosis. Special attention must be paid to inquiring about maternal alcohol use before the woman recognized that she was pregnant. Some women do not consider that their prior drinking is important and many underreport it. Training is required in how to obtain this information in a non-threatening, non- judgmental way.

Canadian survey data suggest that the number of women who report drinking during pregnancy has decreased. The National Population Health Survey, 1994-1995 46 and National Longitudinal Survey of Children and Youth, 1994-1995 47 reported that 17-25% of women drank alcohol at some point during their pregnancy and 7-9% drank alcohol throughout their pregnancy. According to the National Longitudinal Survey of Children and Youth, 1998-1999 48 14.4% of women drank at some point during their pregnancy and 4.9% drank throughout their entire pregnancy (3% reported binge drinking during pregnancy). In the Fall 2002 Survey of First Nations People Living on Reserve, 49 53% of the respondents said that cutting down or stopping alcohol use was important for women to have a healthy baby.

The evaluation of "significant alcohol exposure" is often confusing. The IOM describes significant alcohol exposure as "a pattern of excessive intake characterized by substantial, regular intake or heavy episodic drinking" 4 (the National Institute on Alcohol, Alcoholism, and Alcohol Abuse defines heavy alcohol use as drinking 5 or more drinks per occasion on 5 or more days in the past 30 days 36). Evidence of this pattern may include frequent episodes of intoxication, development of tolerance or withdrawal, social problems related to drinking, legal problems related to drinking, engaging in physically hazardous behaviour while drinking, or alcohol-related medical problems such as hepatic disease. As further research is completed and as, or if, lower quantities or variable patterns of alcohol use are associated with alcohol-related birth defects (ARBD) or ARND, these patterns of alcohol use should be incorporated into the diagnostic criteria. 4

6. Diagnostic criteria for FAS, partial FAS and ARND

Recommendations

1. The criteria for the diagnosis of fetal alcohol syndrome, after excluding other diagnoses, are:

2. Evidence of prenatal or postnatal growth impairment, as in at least 1 of the following:

1. Birth weight or birth length at or below the 10th percentile for gestational age.

2. Height or weight at or below the 10th percentile for age.

3. Disproportionately low weight-to-height ratio (= 10th percentile).

3. Simultaneous presentation of all 3 of the following facial anomalies at any age:

1. Short palpebral fissure length (2 or more standard deviations below the mean).

2. Smooth or flattened philtrum (rank 4 or 5 on the lip-philtrum guide).

3. Thin upper lip (rank 4 or 5 on the lip-philtrum guide).

4. Evidence of impairment in 3 or more of the following central nervous system domains: hard and soft neurologic signs; brain structure; cognition; communication; academic achievement; memory; executive functioning and abstract reasoning; attention deficit/hyperactivity; adaptive behaviour, social skills, social communication.

5. Confirmed (or unconfirmed) maternal alcohol exposure.

6. The diagnostic criteria for partial fetal alcohol syndrome, after excluding other diagnoses, are:

7. Simultaneous presentation of 2 of the following facial anomalies at any age:

1. Short palpebral fissure length (2 or more standard deviations below the mean).

2. Smooth or flattened philtrum (rank 4 or 5 on the lip-philtrum guide).

3. Thin upper lip (rank 4 or 5 on the lip-philtrum guide).

8. Evidence of impairment in 3 or more of the following central nervous system domains: hard and soft neurologic signs; brain structure; cognition; communication; academic achievement; memory; executive functioning and abstract reasoning; attention deficit/hyperactivity; adaptive behaviour, social skills, social communication.

9. Confirmed maternal alcohol exposure.

10. The diagnostic criteria for alcohol-related neurodevelopmental disorder, after excluding other diagnoses, are:

11. Evidence of impairment in 3 or more of the following central nervous system domains: hard and soft neurologic signs; brain structure; cognition; communication; academic achievement; memory; executive functioning and abstract reasoning; attention deficit/hyperactivity; adaptive behaviour, social skills, social communication.

12. Confirmed maternal alcohol exposure.

13. The term alcohol-related birth defects (ARBD) should not be used as an umbrella or diagnostic term, for the spectrum of alcohol effects. ARBD constitutes a list of congenital anomalies, including malformations and dysplasias and should be used with caution ( Table 1).

Our definition of partial FAS differs from the published IOM criteria. 4 Where significant prenatal alcohol exposure is known and there is significant growth retardation and significant indicative facial features but no evidence of brain involvement, a diagnosis of partial FAS could be made using the IOM criteria. It is our view that, using the term partial FAS in the absence of measurable brain deficits could be harmful for the individual because the diagnosis of partial FAS implies brain dysfunction. If some characteristic facial features and growth impairment, without significant developmental or behavioural problems, are found in children under 6 years of age, it would be prudent to say that the child may be at risk of learning and behaviour problems at a later time due to prenatal alcohol exposure. No alcohol-related diagnosis should be made, but the child must be monitored by the family physician or health care worker and deficits should be documented using a neurodevelopmental assessment.

The term "partial" in partial FAS does not imply that these individuals are less severely impaired in day-to-day functioning than those with a diagnosis of FAS, as the deficits in brain function may be similar.

7. Harmonization of the Institute of Medicine (IOM) and 4-Digit Diagnostic Code approaches

Recommendations

1. The approach identified in the 4-Digit Diagnostic Code should be used to describe, assess and measure objectively alcohol exposure, growth, facial features and brain damage. The 4-Digit Diagnostic Code should be recorded for each assessment and may be useful for surveillance and research purposes.

2. The terminology in the IOM criteria should be used to describe the diagnosis.

Table 4 and Table 5 illustrate how we recommend harmonizing the IOM and 4-Digit Diagnostic Code criteria. The ARBD category has limited utility in the diagnosis, but we do recognize that alcohol is teratogenic and may be responsible for birth defects if exposure occurs during critical periods of development. However, in the absence of other features of FAS or brain deficits, it is difficult to attribute causation.

Future research related to diagnostic guidelines

The lack or unavailability of evidence and data in key areas limits the effectiveness of the diagnostic process, in general. Such key areas include the development of Canadian growth and anthropometric norms for all ages and ethno-cultural groups. There is also a need for the development and validation of screening tools that are specific and sensitive to prenatal alcohol exposure. These tools should be adaptable for use in various contexts, they should be culturally appropriate and they should lead to accurate referrals for diagnosis and assessment.

Emerging issues

Biomarkers

Often, women will not accurately recall the amount or frequency of alcohol consumption during pregnancy. Some women may also underestimate consumption level or deny that they drank alcohol during pregnancy. Medical records are known to be incomplete with respect to maternal alcohol history. Currently, there are no reliable means to confirm maternal drinking using biochemical markers in pregnancy. High levels of whole blood-associated acetaldehyde, carbohydrate-deficient transferrin, gamma-glutamyl transpeptidase and mean red blood cell volume may be useful markers in pregnant women. 50

Studies are underway to determine the utility of fatty acid ethyl esters in meconium as markers for prenatal exposure to alcohol. 51,52,53 This marker will only be useful if it can be established that fatty acid ethyl ester levels in meconium are predictive of developmental outcome. Meconium testing could alert caregivers to infants who might be at risk for alcohol effects and lead to appropriate monitoring, intervention and prevention. Ethical issues regarding informed consent surround the use of biological markers in the baby that may indicate maternal drinking.

Recent innovations have led to the development of laser surface scanning, a non-invasive method for acquiring 3-dimensional images. 33,34 This technique is promising in the analysis of facial features associated with prenatal alcohol exposure, but, at present, is a research tool only.

Remote and rural areas

The availability of diagnostic services is limited in rural and remote areas. A community may not have access to a diagnostic team or resources and services. Until regionally based diagnostic teams are established, the use of telemedicine for distant diagnosis, consultation and training may be helpful. 31 Recent advances using digital imaging and computer-assisted analysis for the diagnosis of characteristic features of FAS have shown promise for analysis of facial features associated with prenatal alcohol exposure. 32,33,44

Adult diagnosis

Diagnosis of adults creates special challenges in all aspects of the diagnosis. Physical features may change over time, there may be catch-up growth, and cumulative environmental influences may distort the evaluation of brain function. The adult's history may include additional traumatic head injury, alcohol and drug abuse, and mental health problems. Although tests for the various domains are readily available, clinicians working with the adult FASD population find that the tests are often not sensitive to real-life issues. In addition to the data required for the diagnosis, an assessment must include additional components such as functional literacy and numeracy, employability and quality of life, which fall within the domain of adaptive skills. The clinician should not rely solely on the self-report of the individual who is alcohol-affected; the history and abilities of the individual must be verified by a reliable source.

Conclusion

The assessment for prenatal alcohol exposure is a diagnosis for the affected person, the birth mother and possibly affected siblings. Rather than labeling, a diagnosis provides a blueprint for early intervention. Treatment planning and implementation, specifically targeted toward the unique needs of the individual and the family, form a large part of the diagnosis.

These guidelines and recommendations have been developed in parallel and in consultation with a United States committee charged with the same task. 54 The challenges for prevention and diagnosis of FASD and intervention to assist those affected by this disorder are evolving and dynamic. Research is ongoing to determine whether tools, such as novel brain imaging techniques, biomarkers and DNA micro-array techniques, might enhance accurate and reliable alcohol-related diagnoses and treatment.

We hope that these guidelines and recommendations will be used to facilitate training of health professionals, improve access to diagnostic services and facilitate referral for intervention or treatment for all people and families living with this disability.

Footnotes

↵*Astley SJ. Diagnostic Guide for Fetal Alcohol Spectrum Disorders: The 4-Digit Diagnostic Code (3rd edition). Seattle: University of Washington Publication Services; 2004.

This article has been peer reviewed.

Contributors: All authors contributed equally to this manuscript. All authors contributed substantially to conception and design, or acquisition of data, or analysis and interpretation of data and drafted the article or revised it critically for important intellectual content. They gave their final approval of the version submitted to be published.

Acknowledgements: This work is supported by the FASD Teams of the Public Health Agency of Canada and the First Nations and Inuit Health Branch, Health Canada. The authors would like to thank the many clinicians and individuals who helped develop, review and provide feedback on these guidelines, especially the Public Health Agency of Canada's National Advisory Committee on FASD; Drs. Fred Boland, Susan Astley and Sterling Clarren; and the Centers for Disease Control and Prevention's scientific working group on diagnosis. This work was supported by the Public Health Agency of Canada and the First Nations and Inuit Health Branch, Health Canada.

Competing interests: None declared.

References

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Fetal alcohol spectrum disorder: Canadian guidelines for diagnosis

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From the Children's Hospital, Health Sciences Centre, Departments of Pediatrics and Child Health and Biochemistry and Medical Genetics, University of Manitoba, Winnipeg, Man. (Chudley); the Department of Educational and Counselling Psychology and Special Education, University of British Columbia; Asante Centre for Fetal Alcohol Syndrome, Maple Ridge, B.C.

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Home | POPFASD - Fetal Alcohol Spectrum Disorder (FASD) Resource for Educators

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our collection of POPFASD-developed resources in addition to curated resources from around the web.

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Assessing FASD and Complex Developmental Behavioural Conditions (CDBC) Interior HealthInterior Health Children's Assessment NetworkChildren's Assessment Networ...

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FASD Key Worker & Parent Support Program: Maintains and enhances the stability of families with children and youth with FASD and other complex developmental disorders in order to improve the children’s long term outcomes by increasing the knowledge of parents and professionals about developmental-behavioural conditions such as FASD.

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cariboo chilcotin child development centre

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Services of the Cariboo Chilcotin Child Development Centre Association, Williams Lake, BC, Canada

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Cariboo Chilcotin Child Development Centre Association, Williams Lake, BC, Canada. Our services are family-centered. Child & Youth Care. Intensive Support & Supervision. FASD. Infant Development. Occupational Therapy. Physiotherapy. Pre Natal. Preschool. Child & Youth Mental Health. Speech & Language Therapy.

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Alcohol is a teratogen (substance that is toxic to the baby's developing brain). Damage can occur in various regions of the brain. The areas that might be affected by alcohol exposure depend on which areas are developing at the time the alcohol is consumed.

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This video is about a boy named Alex, who is in grade 1 with FASD. The people talking about Alex are his support network that consists of his mom and dad, his teacher, his educational assistant as well as community supports. They talk about Alex as a person and his strengths, that he is a fun and very happy boy who is always smiling and likes to give hugs and gets attached to people who like him.  Alex's support network show great communication in openly talking about his strengths as well as ways to assist his challenges.

One form of communication that we liked was their Daily Communication Booklet.  This was used every day at school and by his parents at home.  Not only was it a way to record how Alex did that day, but also was a channel for communication between parents and school.  Another idea in this video that we found interesting was when Alex's teacher referred to his classmates as being the best teachers for him.  Because he looks up to them and wants to be like them.

Alex loves school, a setting that most children with FASD would find overwhelming.  Alex's success in school, we believe, is due to his strong support network including his family.

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Alex's Success Story | POPFASD - Fetal Alcohol Spectrum Disorder (FASD) Resource for Educators

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Guidelines for Diagnosing FASDeciding if a child has FAS takes several steps. There is no one test to diagnose FAS, and many other disorders can have similar symptoms. Following is an overview of the diagnostic guidelines for FAS. For more detail, see the full text Fetal Alcohol Syndrome: Guidelines for Referral and Diagnosis for healthcare providers and other clinicians.

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Guidelines for Diagnosing FASDeciding if a child has FAS takes several steps. There is no one test to diagnose FAS, and many other disorders can have similar symptoms. Following is an overview of the diagnostic guidelines for FAS. For more detail, see the full text Fetal Alcohol Syndrome: Guidelines for Referral and Diagnosis for healthcare providers and other clinicians.

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Centers for Disease Control and Prevention

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Fetal alcohol spectrum disorders (FASDs) are a group of conditions that can occur in a person whose mother drank alcohol during pregnancy. These effects can range from mild to severe. They can affect each person in different ways and can include physical problems and problems with behavior and learning. The term FASDs is not intended as a clinical diagnosis.

CDC worked with a group of experts and organizations to review the research and develop guidelines for diagnosing fetal alcohol syndrome (FAS). The guidelines were developed for FAS only. CDC and its partners are working to put together diagnostic criteria for other FASDs, such as alcohol-related neurodevelopmental disorder (ARND). Clinical and scientific research on these conditions is going on now.

Guidelines for Diagnosing FAS

Deciding if a child has FAS takes several steps. There is no one test to diagnose FAS, and many other disorders can have similar symptoms. Following is an overview of the diagnostic guidelines for FAS. For more detail, see the full text Fetal Alcohol Syndrome: Guidelines for Referral and Diagnosis for healthcare providers and other clinicians.

Healthcare professionals look for the following signs and symptoms when diagnosing FAS:

1. Abnormal facial features
A person with FAS has three distinct facial features:

Smooth ridge between the nose and upper lip (smooth philtrum)

Thin upper lip

Short distance between the inner and outer corners of the eyes, giving the eyes a wide-spaced appearance.

2. Growth problems
Children with FAS have height, weight, or both that are lower than normal (at or below the 10th percentile). These growth issues might occur even before birth. For some children with FAS, growth problems resolve themselves early in life.

3. Central nervous system problems
The central nervous system is made up of the brain and spinal cord. It controls all the workings of the body. When something goes wrong with a part of the nervous system, a person can have trouble moving, speaking, or learning. He or she can also have problems with memory, senses, or social skills. There are three categories of central nervous system problems:

1. Structural
FAS can cause differences in the structure of the brain. Signs of structural differences are:

Smaller-than-normal head size for the person's overall height and weight (at or below the 10th percentile).

Significant changes in the structure of the brain as seen on brain scans such as MRIs or CT scans.

2. Neurologic
There are problems with the nervous system that cannot be linked to another cause. Examples include poor coordination, poor muscle control, and problems with sucking as a baby.

3. Functional
The person's ability to function is well below what's expected for his or her age, schooling, or circumstances. To be diagnosed with FAS, a person must have:

Cognitive deficits (e.g., low IQ), or significant developmental delay in children who are too young for an IQ assessment.Or

Problems in at least three of the following areas:

Cognitive deficits (e.g., low IQ) or developmental delays
Examples include specific learning disabilities (especially math), poor grades in school, performance differences between verbal and nonverbal skills, and slowed movements or reactions.

Executive functioning deficits
These deficits involve the thinking processes that help a person manage life tasks. Such deficits include poor organization and planning, lack of inhibition, difficulty grasping cause and effect, difficulty following multistep directions, difficulty doing things in a new way or thinking of things in a new way, poor judgment, and inability to apply knowledge to new situations.

Motor functioning delays
These delays affect how a person controls his or her muscles. Examples include delay in walking (gross motor skills), difficulty writing or drawing (fine motor skills), clumsiness, balance problems, tremors, difficulty coordinating hands and fingers (dexterity), and poor sucking in babies.

Attention problems or hyperactivity
A child with these problems might be described as "busy," overly active, inattentive, easily distracted, or having difficulty calming down, completing tasks, or moving from one activity to the next. Parents might report that their child's attention changes from day to day (e.g., "on" and "off" days).

Problems with social skills
A child with social skills problems might lack a fear of strangers, be easily taken advantage of, prefer younger friends, be immature, show inappropriate sexual behaviors, and have trouble understanding how others feel.

Other problems
Other problems can include sensitivity to taste or touch, difficulty reading facial expression, and difficulty responding appropriately to common parenting practices (e.g., not understanding cause-and-effect discipline)

4. Mother's Alcohol Use during Pregnancy
Confirmed alcohol use during pregnancy can strengthen the case for FAS diagnosis. Confirmed absence of alcohol exposure would rule out the FAS diagnosis. It's helpful to know whether or not the person's mother drank alcohol during pregnancy. But confirmed alcohol use during pregnancy is not needed if the child meets the other criteria.

Summary: Criteria for FAS Diagnosis
A diagnosis of FAS requires the presence of all three of the following findings:

1. All three facial features

2. Growth deficits

3. Central nervous system problems. A person could meet the central nervous system criteria for FAS diagnosis if there is a problem with the brain structure, even if there are no signs of functional problems.

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fetal alcohol spectrum disorder symptoms

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FASDs are 100% preventable if a woman does not drink alcohol during pregnancy. There is no known safe amount of alcohol to drink while pregnant. There is also no safe time during pregnancy to drink and no safe kind of alcohol.

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How to Diagnose Diverticulitis How to Diagnose Als How to Diagnose a Solenoid How to Diagnose MRSA Diagnose PC Problems How to Diagnose BSE How to Diagnose a Computer Board How to Diagnose Anemia How to Diagnose Epilepsy How to Diagnose Autism How to Diagnose Laptop Motherboard On a Problem How to Diagnose MS How to Diagnose Carpal Tunnel

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 FASD in the workplace                                         Difficulty in the workplace is one of the secondary disabilities seen in individuals with FASD. Research has shown that 79% of adults with FASD have employment difficulties. Only 13% held a regular job at some point, even though many adults had received employment training and preparation. Difficulties were centered around keeping a job more often than obtaining a job in the first place. Job training, transition planning, and economic supports and protection are need as the individual moves throughout adolescence and adulthood.WHY DOES IT HAPPEN?Problems leading to workplace difficulties may include: • Poor emotional control • Social difficulties (i.e. difficulties with co-workers and supervisors), • Poor understanding of tasks • Poor judgement • Problems with time management and planning leading to unreliability. • Problems at home such as raising a child, as many individuals in the research in this area had gone on to have their own children. WHAT MIGHT HAPPEN WITHOUT THE RIGHT INTERVENTION?Difficulties in the workplace may lead to other secondary disabilities such as mental health problems, dependent living/inability to support oneself, and social isolation. 

# data[].attributes.subject
 FASD in the workplace                                         Difficulty in the workplace is one of the secondary disabilities seen in individuals with FASD. Research has shown that 79% of adults with FASD have employment difficulties. Only 13% held a regular job at some point, even though many adults had received employment training and preparation. Difficulties were centered around keeping a job more often than obtaining a job in the first place. Job training, transition planning, and economic supports and protection are need as the individual moves throughout adolescence and adulthood.WHY DOES IT HAPPEN?Problems leading to workplace difficulties may include: • Poor emotional control • Social difficulties (i.e. difficulties with co-workers and supervisors), • Poor understanding of tasks • Poor judgement • Problems with time management and planning leading to unreliability. • Problems at home such as raising a child, as many individuals in the research in this area had gone on to have their own children. WHAT MIGHT HAPPEN WITHOUT THE RIGHT INTERVENTION?Difficulties in the workplace may lead to other secondary disabilities such as mental health problems, dependent living/inability to support oneself, and social isolation. 

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ADOPTIVE PARENTS GIVE UP DANGEROUS DAUGHTER

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ADOPTIVE PARENTS GIVE UP DANGEROUS DAUGHTER

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This is a story about a couple who had a biological son and then several miscarriages, which lead to them adopting a baby girl named Ellie.  Early on they noticed Ellie's inability to bond. They described her as being full of rage.  At the age of 2 she was accused of pushing her mom, who was 8 months pregnant, down the stairs.  When Ellie was 3 her family received a letter from the birth mothers brother stating that his sister used drugs and alcohol during her pregnancy.  This lead to Ellie's first diagnosis of FASD.  By 5 she was diagnosed with reactive attachment disorder, and at 6 years old she was diagnosed with Bipolar disorder.

Ellie's family found it very hard to cope with her rage and suicidal tendencies, and were concerned for the safety of their other children.  Ellie reported at school of being abused at home.  Charges were not filed, but the family was scared that they would be torn apart by these false allegations.

In the end, they turned Ellie over to a guardian family for a trial period of a year, and then will re evaluate what is best for Ellie.

We found this story frustrating, there was nothing good said about Ellie. We also felt that the adoptive parents focused more on how they were victims, but glad there was another family willing to take Ellie in.

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Lori and Craig Gertz, parents from Long Grove, Ill., were faced with a heartbreaking and unimaginable choice: to keep their family together, or to give up one of their kids in order to protect the others.

Seven-year-old, adopted daughter Ellie was out of control, hurting her siblings and trying to hurt herself -- all because she was born with a condition called fetal alcohol spectrum disorder (FASD).

When Lori Gertz brought the eight pound adoptive newborn home from the hospital, she quickly noticed Ellie's inability to bond.

She was virtually impossible to soothe and would cry for hours, Gertz said. Touching and rocking only made Ellie worse. As she grew older, Ellie lashed out at anyone who would say no, and even pushed her mother -- then eight months pregnant -- down the stairs.

By the age of six, she'd had four psychiatric hospitalizations and made numerous suicide attempts.

"Last fall things really got pretty bad and she started to run into traffic with intent to kill herself," Gertz said on "Good Morning America" today. "The responsibility was solely on me to keep her from running into traffic."

Specialists began to recommend residential treatment. They worried that Ellie might one day fatally hurt her siblings.

So three months ago, the family did the unthinkable -- they sent their adoptive daughter, now 7, to Washington state to live with another family. They might have the expertise and emotional distance from the troubled child to cope with her.

"I just never, in my life, could imagine even associating with having to let my baby go," said Gertz, 47, a marketing specialist. "I will always love my Ellie."

"Our family was being destroyed," she said after seeing 38 specialists and spending hundreds of thousands of dollars to help Ellie. "Our savings is gone. We have paid out of our pocket everything to take care of our daughter."

Gertz was so stressed that Ellie could explode at a moment's notice, battering her little sister's Talia's head against the wall, that she was getting chest pains. "I had to watch Ellie like a hawk," she said.

Theirs is not an adoption-gone-wrong story. Gertz said she would adopt again in a heartbeat.

Fetal Alcohol Spectrum Disorder

Instead, Ellie's lack of impulse control, inability to bond and neurological problems were diagnosed as having been caused by FASD -- a condition that affects as many children as autism, yet gets a fraction of the medical attention and resources.

The child's biological mother was an addict, but the worst of her vices -- crack cocaine, PCP, heroin and methamphetamine -- were nothing compared to the alcohol that had ravaged Ellie's developing brain in the first trimester of pregnancy.

"Even after all the drugs our birth mother did, it was the alcohol which left Ellie with the legacy she had," Gertz said on "GMA."

Lori Gertz and her husband Craig, a lawyer, have faced roadblocks at every turn, first diagnosing her condition and then getting support services.

And now, they have entered in to an arrangement called third-party guardianship, because they cannot afford the $160,000 a year for a residential treatment program.

They have handed over full control of Ellie's education and upbringing for a year, when the families will then make a final decision about her care.

"At the end of the year, we're going to all sit down and see what's next for Ellie and what's the next step," said Craig Gertz.

Lori Gertz decided to go public with her story because of the "shame and guilt" that she feels, unable to nurture the daughter she loves as much as her two biological children, Jonah, now 11, and Talia, 5.

"I could not be everything I promised to the child," she said.

She started a blog about FASD, and hopes to help others by sharing her journey with Ellie in a book, "Not of My Womb: Parenting the Legacy of an Addict."

Many Doctors Don't Know Fetal Alcohol Syndrome

"Doctors don't know what it looks like and the medical community is afraid to approach it," said Gertz. "God forbid the big alcohol companies got involved in saying it was bad when you are pregnant. One of the challenges is that nobody wants to admit they did something harmful to a child knowingly. You are creating a life -- you are a canister for a child. It's 100 percent preventable."

About 40,000 newborns a year are affected by FASD -- about 1 percent of all live births in the United States, according to the National Organization on Fetal Alcohol Syndrome (NOFAS). About 2 million adults are affected by FASD and alcohol-related neurodevelopment disorders.

"It's a significant health issue with a prevalence similar to autism," said NOFAS president Tom Donaldson.

Although it's the leading cause of birth defects and developmental disabilities, doctors are not well-trained in diagnosis. When they do see it, they are "not prepared to deal with it," he said.

According to the Centers for Disease Control and Prevention, about 125,000 women a year have serious alcohol problems throughout pregnancy.

A fetus is most vulnerable in the first trimester. The severity of the disorder can range from full-blown fetal alcohol syndrome, with facial deformities and neurological damage, to a spectrum of disorders like Ellie's.

How a child is affected is determined by both the timing and pattern of alcohol use.

Alcohol, like the carbon monoxide from cigarettes, passes easily through the placenta into the blood of a developing fetus, putting the child at risk for FASD. Because the fetus cannot break down the alcohol the way an adult can, its blood alcohol levels remain high for a longer period of time.

"Alcohol is a neurotoxin," said Donaldson. "Why would you want to ingest any amount?"

From the start, Ellie showed signs of FASD, though it would take almost three years to diagnose her. She was born shaking violently and had feeding difficulties and colic.

Later, she showed deficits in the executive functions of the brain, like impulse control and understanding cause and effect.

In her blog, Gertz describes a family outing when Ellie stepped off the curb and darted into traffic.

"I grabbed her and pulled her close in, that frightened way a parent does when they are scared and angry, and I said, 'What were you thinking?'" said Gertz. "She looked at me as though she was having a moment of not being able to process what she was hearing -- I called them 'blips' and they were often -- but she just stared at me and began to cry and say, 'I don't know mama, I don't know what I was thinking.'"

Ellie was born in New Jersey in 2003. Gertz turned to private adoption after she suffered seven miscarriages after the birth of her son Jonah, then four. She went online to find the birth mother, who was eight months pregnant. Nothing in the medical records suggested the baby had been exposed to anything other than smoking -- a one-cigarette-a-day habit.

She had facial anomalies at birth, but nobody thought they meant anything: a flat philtrum (the line between the nose and the upper lip), wide-set eyes, flaps inside her eyes, a small head size and low-set ears.

"No one who looked in the face of my beautiful rash-ravaged daughter suggested FASD to us," said her mother.

Birth Mother's Brother Reveals Drug Abuse

It wasn't until Ellie was two that they received a flurry of e-mails from the birth mother's brother, revealing her heavy drug habit. A year later, they learned that Ellie's birth mother had been in jail and committed suicide the day she was released.

In 2006, when Ellie was three, a doctor familiar with FASD -- the 39th specialist the family had seen-- diagnosed Ellie in "under five minutes," according to Gertz.

"She was really already as a 3-year-old completely out of control. She had behaviors that were disruptive. She would have sudden rages that came out of nowhere," said Dr. Ira J. Chasnoff, author of "The Mystery of Risk; Drugs, Alcohol, Pregnancy, and the Vulnerable Child." "Ellie also had a significant attachment disorder."

"We sat there like the earth stood still and the tears fell out of my eyes and my husband got so angry in the moment," she said. "She'd had drugs, but they were nothing compared to what alcohol had done with her brain."

In the first few years, Gertz went through eight nannies -- one quit the first day. They even hired a babysitter to take Jonah to school because Ellie would thrash so hard trying to get out of the car seat.

Eight weeks after Ellie entered first grade, she kicked the principal in the head. "She bit, spat and went AWOL," said Gertz.

By the time she was in grade school, Ellie had exhausted all support services at her local public school.

The family spent "hundreds of thousands of dollars" on 38 specialists and a myriad of antipsychotic drugs to help their daughter, but nothing helped.

"I tried pills and every sort of food and diet and doctors and specialists," she said. "But you can't medicate an organic disorder."

Ellie did reasonably well in preschool with early intervention services. But when she transitioned to first grade, the local school system determined how much federal funding the family could receive.

The biggest hurdle continues to be that FASD is not a diagnosable mental health disorder, as defined by the psychiatric Bible of psychiatry, the Diagnostic and Statistical Manual of Mental Disorders, edition IV.

There was no health impairment category that could define the help Ellie needed.

Had Ellie been born with brain damage or suffered a brain trauma in an accident, it would have been easier to obtain funding for a residential treatment center (RTC), according to Getz.

"There aren't many options," said Gertz. "We tried to get funding from the state and they said no. The school said no. No one wants to put a small child in an RTC. It's tragic."

Ellie had a reasonably high IQ, but in Illinois, "developmentally disabled" children entitled to funding must have an IQ of less than 85.

"The health care system is so flawed," said Gertz. "It's not meeting the needs of children."

Early intervention programs are can be critical for children with FASD, according to Dr. Cynthia Bearer, chief of neonatologist at University of Maryland School of Medicine and Medical Center.

Studies have shown that treatment before the age of six can help children like Ellie control their behavior, saving society billions of dollars in the cost of having out-of-control children who endanger themselves and others.

But diagnosis is imprecise without a history of drinking, according to Bearer, who is doing studies to find markers for alcohol use among pregnant women.

"Not only are women reluctant to tell doctors, but doctors are reluctant to ask," she said. "They are never trained to ask in a non-threatening way and get a more truthful answer."

As for Ellie, her new family, 1,700 miles away from her adoptive parents, is a "handmade, God-sent solution," according to Gertz. "We were so desperate."

She is in a large family, younger than the last sibling by seven years, "so there is no one she can hurt," said Gertz.

The mother has fostered 150 children and has a teenage son with FASD.

"We are told [Ellie] is incredibly argumentative but not having the violent outbursts she was," said Gertz. "I couldn't be someone who could emotionally withdraw from her. This mother is experienced and comes into this with a new energy. I was beaten up and pushed down."

Gertz said her heart aches for Ellie, even though her daughter was more loving toward the "insignificant people" in her life than her family. "She would smile better at someone in the grocery store," she said.

Now, 5-year-old Talia and 11-year-old Jonah are blossoming. For the first time they are the focus of their parents' attention. The entire family is in grief therapy.

Gertz said she still has nightmares and constantly second-guesses her decision to let go of Ellie. But her husband's response is, "What about the rest of the family?"

"The other children were compromised," she said. "We had three birds in our nest, not one."

"I have come to accept that while she was very much my daughter, I was never her mother," said Gertz. "She never bonded with me. That's a hard pill to swallow."

"I couldn't be the kind of parent of my dreams," she said. "I could face the trauma, but I couldn't soothe the one I loved so deeply."

ABC News research specialist Nicholas Tucker contributed to this report.

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Adoptive Parents Give Up Dangerous Daughter

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Lori and Craig Gertz, parents from Long Grove, Ill., were faced with a heartbreaking and unimaginable choice: to keep their family together, or to give up one of their kids in order to protect the others.