March 2007

• Fetal Alcohol Spectrum Disorders - A Judge’s Perspective
• Beyond a Diagnosis
• Rules for Living with Adults with FASD

Fetal Alcohol Spectrum Disorders - A Judge’s Perspective

By Judge Chris Melonakis

I first learned about Fetal Alcohol Syndrome (FAS) approximately 15 years ago while still practicing law. A client had been charged with arson after store security video captured him setting fire to a paper products section in a local department store. After his arrest, he also confessed to burning his neighbor’s house to the ground.

During my initial conversations with my client and at later meetings, it became manifest that his cognitive functioning was impaired. His mental processes reflected a lack of appreciation for the seriousness of his conduct. I became convinced that he was developmentally disabled; however, all of the historical information I obtained from his parents as well as his medical and mental health history disclosed that he did not meet the criteria for a developmental disability diagnosis.

His parents had nearly bankrupted themselves in obtaining mental health treatment for him over the years. He had been through both in-patient and outpatient mental health treatment, without appreciable inroads. Nobody had conducted a thorough assessment, including biological familial history assessment, in connection with his medical condition.

Since the case was clearly not defensible on the facts or the prevailing law, and in light of my concerns regarding my client’s competency, we made the decision to raise the issues of both competency and sanity in the criminal proceedings. Over the course of the psychological and psychiatric assessments conducted in connection with the insanity and competency issues, the evaluators discovered that this young man had been adopted. They requested additional information regarding his birth mother, which my client’s adoptive parents were able to produce. This historical information disclosed that his biological mother had seriously abused alcohol during her pregnancy. My client received a full-blown assessment based upon these historical facts as well as new mental health and physical examinations. He was diagnosed with FAS. Unfortunately, he was also determined competent to proceed to trial.

The prosecuting attorney and judge were both willing to permit his sentence to be rehabilitative rather than punitive if I could find an appropriate treatment center. Despite the seriousness of his offenses, all reports from his jailers and others who had contact with him found him to be child-like, pleasant and compliant, and a model prisoner. He was also frail and subject to risk for significant exploitation by his fellow prisoners. It was apparent to everybody that that he was likely to leave prison a far more dangerous person than he was when he entered the penitentiary.

Recognizing this young man’s needs, I started learning everything I could about FAS and how it could be treated so that I could give everybody involved some options other than a prison sentence. What I learned was terribly disheartening. There was little information available in the public domain regarding the condition, although I did learn some important facts about drinking during pregnancy. There was nothing available regarding treatment. The combination of the information contained in the professional evaluations that indicated my client was unpredictable with a high risk for future criminality, the serious nature of the offenses, and my inability to find a facility that could treat his diagnosed condition, resulted in the judge imposing a 16-year sentence.

It is a case that has haunted me for years. There is no doubt that this young man could have been managed in a setting other than prison where he was undoubtedly exploited and abused by other inmates. The structure that the county jail provided permitted him to function with little disruption and without posing a danger to himself or those around him. For years I believed that there had to be a better way to deal with people like him.

When Eileen Bisgard approached me with the opportunity to apply to participate in one of the FASD Center For Excellence’s local initiatives, I gladly agreed. We were fortunate enough to be designated one of the local sites for development of screening and assessment services through the United States Department of Health and Human Services, Substance Abuse and Mental Health Services Administration. This designation has permitted us to start the process of screening, assessing and, hopefully, treating young people with a Fetal Alcohol Syndrome Disorder (FASD) diagnosis that have contact with our court system.

Statistically approximately 40,000 people a year are diagnosed with FAS. It is my belief that a much greater number of children are born with FAS or a FASD. Common sense leads me to this conclusion. In 2004 there were 872,000 documented cases of child abuse or neglect in the United States.¹ In my court, in a comparable period, 87% of the families that entered the child welfare system did so with drug or alcohol abuse as a major component of the familial dynamic that led to the filing of the case. It is not a large leap of logic to conclude that children in the child welfare system were likely to have been parentally exposed to alcohol in a significant percentage of these cases.²

Moreover, women who abuse drugs and alcohol while pregnant are less likely to seek medical treatment because they fear having their children removed from their custody. Such care may lead to better statistical information regarding the incidence of prenatal alcohol consumption.³ These dynamics lead to the common sense conclusion that FAS and FASD are substantially underreported.

What is the significance of these conclusions to the court? First, many of the behaviors that children diagnosed with FASD demonstrate are common in delinquent or truant children. The six primary core behavior traits of individuals with FASDs are present in many children who come before the court in delinquency or truancy cases. Second, these children are more likely to enter the child welfare system in order to have their needs met because they come from an environment that is likely to compromise their safety, well being and permanency. Children who are abused or neglected are more likely to face a multiplicity of lifetime difficulties. These issues by their very nature inevitably lead to some type of judicial involvement in dissolution of marriage proceedings, criminal prosecutions or civil proceedings such as dependency cases.

In a compelling article, Whitecrow Camp for Children with Fetal Alcohol Spectrum Disorder: A Pediatrician’s View published in June 2005 by the British Columbia Medical Association in the British Columbia Medical Journal, Dr. Jonathan Down describes his experience attending a camp for children with FASD. His description of the difficulties he experienced in identifying the “invisible disability” of FASD in some fellow volunteers is instructive. As a highly trained and experienced professional who had routinely dealt with FASD, it was only after these volunteers spoke about their disabilities that he was able to identify their impairments.

The significance of this observation is important when placed in a forensic context. Dr. Down describes the impairment in this way:

“People with FASD often have damage to the part of the brain required for self-regulation. In a medical report, I would term this “inhibition of socially inappropriate behavior.” After my experiences at Whitecrow, however, I know that with FASD it really means that “he or she doesn’t have an off button.” This is a very simple idea, but of critical importance if one is aiming to avoid behavioral deterioration. Once those with FASD start down a behavioral pathway, such as becoming increasingly physical toward others, it is very hard for them to change their behavioral direction or trajectory. The take-home message for me was: don’t push the on button, and if you do, try to recognize it early and redirect.⁹ ”

In the context of an environment in which a young person with FASD comes before the court for having committed a delinquent act, attempting to “rehabilitate” the juvenile by appropriately sanctioning his or her conduct and then treating the juvenile through traditional modalities such as anger management programs or community service work is likely to have exactly the opposite of the intended result. These young people must be dealt with by a protocol that manages a disability that is the result of brain damage not a behavioral manifestation of an emotional disorder.

A trained professional can often rather quickly identify children with FAS simply by looking at facial features. The more subtle forms of FASD are not so easily identified. If a judge, probation officer or other professional is dealing with a child whose behavior is driven by a child’s undiagnosed or unrecognized medical disability as opposed to a mental health or emotional disorder, well-meaning interventions may result in even more social acting out which routinely brings the young person back before the court for probation violations, ultimately resulting in unnecessary detention or institutionalization. Where a young person can be managed in the community through an appropriate intervention after a better, more discrete assessment, the potential savings in human, social and fiscal resources are significant.

One of Dr. Down’s anecdotes in his article highlights the significance of this dynamic:

“People with FASD are very literal in their interpretation of language. Alcohol appears to damage part of the brain that is responsible for language nuance and subtlety. Over coffee one evening, we were talking about a school in Victoria that historically used to segregate the boys from the girls. On the school wall, carved into the stone were the words boys and girls over their respective doorways. However, when Annie heard the part about girls and boys being carved into stone, her comment was “that must have hurt them.” I learned to avoid the use of the negative. “Don’t run” was ineffective. “Walking feet” made for good communication. I became extremely aware of my language at Whitecrow. I realized that I enjoy wordplay, but that it could be a barrier. I learned to keep my language simple and unambiguous.

People with FASD have difficulty in the area of generalization. At Whitecrow, the rules applied to everyone, not just the campers. For example, the beach and waterfront were out of bounds except when a lifeguard was present. Volunteers were required to model the behavior that was expected of the campers. This precluded walks to the beach at sunset. It also curtailed any goofing around that might be misinterpreted.

Executive function is usually damaged by prenatal alcohol exposure. For some reason the prefrontal cortex, where this function is mainly located, is particularly vulnerable. Changes in routine, schedule and planning have the potential for creating confusion in the mind of an affected person. This was forcefully brought home to me on the day when a government member of the Legislative Assembly arrived, together with the media, to view the camp. It threw a wrench in the day for many kids, because their schedule was disrupted. There were emotional repercussions to this, as many of the children became hyper and labile later in the day. The limbic system, which is responsible for emotional regulation, is located close to the prefrontal cortex. It is not surprising that emotional volatility may accompany changes in routine.

One of the more difficult personal challenges for me was withholding physical contact with the kids, unless they initiated it first. With my own children, that was always part of the fun of being at the beach. At Whitecrow, roughhousing in the water at the beach was a no-no. This related to the “on-off switch” phenomenon and also the need to model behavior. Alcohol often interferes with sensory processing. For those with FASD, a simple hug or chance touching may be painful and may elicit an aggressive response. Professionally, I realized that I would need to stop giving reassuring touches to my patients.¹⁰”

In Fetal Alcohol Spectrum Disorder and the Role of Family Court Judges in Improving Outcomes for Children and Families, Diane V. Malbin nicely summarizes the challenges in dealing with persons with FASD in a legal setting. Ms. Malbin relates successful treatment plans that dealt with system-involved children. Prior treatment plans had failed because:

“Standard assessments that determined IQ, academic achievement, and behavior profile were descriptive findings that only captured Fred’s symptoms. Fred was diagnosed and treated for behavioral problems, not brain damage.

Years of interventions for his behaviors were ineffective. Improvements were achieved not by employing methods to stop presenting symptoms, but rather by recognizing their source and providing appropriate accommodations. These were inexpensive and effective. Symptomatic behaviors previously targeted for intervention became cures for identifying points of poorness of fit. The shift was from trying to change Fred and seeing his behaviors deteriorate to providing adaptations appropriate for his disability and achieving changes in his behaviors as a result. (Emphasis supplied)¹¹ ”

In order to deal with children who have are diagnosed with FASD, judges, probation officers, social workers and other professionals must undergo a paradigm shift in approach. The appropriate approach is to accommodate a physical disability through appropriate structure rather than attempt to attain compliance by intermediate sanctions. The latter approach is likely to simply initiate a process that results in escalating behavior with completely predictable and costly consequences.

Recognizing this dynamic has caused our judicial district to refer every juvenile who is adjudicated delinquent to the Seventeenth Judicial District FASD Initiative to be screened for FASD. If the screen is positive, there is a referral for further assessment to an agency specializing in diagnosing and treating FASD. Thereafter, treatment planning for addressing the the disability as opposed to dealing with behavioral symptoms of the disability is integrated into the probation order. This process is still in its infancy and our court has not yet fully assessed our success rates. We are, however, very hopeful that there will be positive outcomes for children, families and community safety.

The process has required many hours of multi-disciplinary planning meetings, numerous inter-agency trainings and a willingness by all stakeholders to revisit some well-established practices. Ultimately, we are hopeful that we can have a direct and positive impact upon the quality of life in the communities that we serve by addressing a frequently overlooked cause for community disruption.

Judge Chris Melonakis is a District Court Judge in the Seventeenth Judicial District in Brighton, Colorado. In 2005-2006 he served as the Lead Judge for the Brighton Model Court through the National Council of Juvenile and Family Court Judges, and has been active in many family- and juvenile-support community activities.

Citations

¹ Source, Child Maltreatment 2004, United States Department of Health and Human Services, Administration for Children and Families.
²The national statistics indicate that, of the children who were maltreated in the reporting year, 62.4% of the maltreatment was as a result of neglect, 2.1% were medically neglected and 14.5% of the victims suffered from “other” abuse or neglect including “congenital drug addiction”. Almost all of these case types that came into my court involved long-term drug or alcohol abuse. Source for Statistics: Child Maltreatment 2004,United States Department of Health and Human Services, Administration for Children and Families.
³Starting the Conversation: Town Hall Meetings on Fetal Alcohol Spectrum Disorders, Center for Substance Abuse Prevention, Substance Abuse and Mental Health Services Administration (2004).
⁴Wasserman, G. A., Keenan, K., Tremblay, R., Coie, J. D., Herrenkohl, T. I., Loeber, R. and Petechuk, D., Risk and Protective Factors of Child Delinquency, Child Delinquency Bulletin Series, United States Department of Justice, Office of Justice Programs, Office of Juvenile Justice and Delinquency Prevention (April, 2003).
⁵These traits as identified in the publication FAS Terms and Conditions by the Family Resource Institute in 2005 are: (1) Extreme vulnerability to peer influence; (2) Volatile/dangerous behavior without predatory intent; (3) Inability to see the need to follow rules; (4) Continuing childlike innocence regardless of age, IQ and experience; (5) Egocentricity: living in the moment for immediate gratification; and (6) Disrupted understanding of cause and effect in every life domain: physical, social, mental, and moral. Compare, Wasserman, Ibid.
⁶Child Maltreatment 2004, supra.
⁷Widom, C. S., Childhood Victimization: Early Adversity, Later Psychopathology, National Institute of Justice Journal (January, 2000).
⁸Ibid.
⁹Down, J., Whitecrow Camp for Children with Fetal Alcohol Spectrum Disorder: A pediatrician’s view, BC Medical Journal, Volume 47, Number 5, pp. 269-270 (June, 2005).
¹⁰Ibid.
¹¹Malbin, D. V., Fetal Alcohol Spectrum Disorder (FASD) and the Role of Family Court Judges in Improving Outcomes for Children and Families, National Council of Juvenile and Family Court Judges, Juvenile and Family Court Journal at page 60 (Spring, 2004).

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Beyond a Diagnosis

By Susan Ryan

Some researchers (Streissguth et al. 1996; 1997) assert that receiving a diagnosis early improves the outcomes for individuals with FAS and FASD. If a child receives a diagnosis of FAS or a qualified professional acknowledges that a child has FASD, does this really make a difference in a child’s life? Do children who receive a diagnosis or have an acknowledgement of FASD in fact receive intervention or treatment to support successful educational and community life outcomes?

Our findings reveal that the answer to the above questions is “no,” at least for the five students in this study. This brief article discusses the results of a four-year case study centered on the lives of five students who received an early diagnosis of FAS or were acknowledged as having FASD. Our findings question the extent to which the diagnosis resulted in improvements in these students’ lives. Implications for: (a) the need for educational interventions in school programs; (b) the need for family support and respite; and (c) possible future directions, are shared here.

During 2001-2005, we conducted the qualitative study using interviews, participant observations and document analysis to ascertain the educational and life outcomes of students who had either received a diagnosis of FAS or had been verified as having FASD.

The 71 individuals interviewed included the five focus-student participants; their biological, adoptive and foster parents; extended family members; parent navigators (parents whose role it is to advocate and support a family through the diagnostic process); diagnostic team members; childcare workers; special and general educators, principals and special education directors; superintendents; psychologists, social workers and counselors; police officers; physicians; residential treatment center staff; and behavioral health counselors.

The five key participants ranged from 3 to 19 years old. The key participants were of diverse backgrounds and included an Athabascan Alaska Native, an Athabascan/African American, a Tlingit Alaska Native, a Yupik Alaska Native, and a Caucasian student. Of the five students with FASD, one had been diagnosed with FAS while the overall diagnostic classifications for the other four students included FAE, static encephalopathy, sentinel physical findings, neurobehavioral disorders and alcohol exposure. All students had received a diagnosis or were identified as having FASD or a diagnosis on the FASD spectrum. These five students, Paul, Alan, Oscar, Ellie and Adam, participated in the study for four years (Alan was placed in an out-of-state facility after one year, so he was involved in the study only that year).

The findings from this study are published in several journals.

Summary of significant findings

1. Medical personnel focus on the impact of alcohol on the developing brain whereas educators focus on function.
   
   Educators and medical personnel do not always see eye-to-eye on what is most important for students with FAS or FASD. Medical personnel interviewed in this study indicated that receiving a diagnosis was most important. Acknowledging the absence or presence of FAS or FASD was, in their minds, critical to the future success of students with FASD. For example: One physician stressed the importance of “getting the parent to understand that there is brain damage due to alcohol.” Another team member stated, “There is organic and irreversible brain damage due to the alcohol consumption of the biological mother during pregnancy.” Anne, an FAS coordinator, described the behavior of a child with FAS as, “what you are seeing is not noncompliance, but pathology.”
   
   If medical personnel wanted to know the “what” of a child’s diagnosis, educators including teachers and administrators tended to want to know “how” in an effort to improve educational outcomes and participation for students with FAS and FASD. Knowing that a child had FAS or FASD did not influence an educator or assist a teacher in the classroom on a day-to-day basis. As the following teacher shares, she needs to know what specific learning strategies might improve a child’s reading, writing, numeracy and other educational outcomes. “[The idea that] the fact that you know something about this person, that they have FASD or that their mother had abused a drug or used alcohol, and that this affects them is going to make a difference. And I reject that premise. I don’t think it is going to make a difference; the fact that you know that is not going to change one thing in the child’s life unless you get it down to the level again of what happens to the child on a day-to-day basis at home, in the community, in the classroom. How does that child learn? How do we have to teach? How do we have to, you know, adapt what we’re doing, change what we’re doing to accommodate his learning needs? And that is different for a wide range of people with that diagnosis. I mean, what you do for one is not necessarily going to work for another.”
   
   
2. Parents’ focus on supports.
   
   Parents interviewed during the four-year study indicated that they needed specific help from professionals beyond a diagnosis. One father told us that, “If I had known then (when he adopted Oscar) what I know now (in terms of lack of support), I would not have adopted Oscar.” Other parents echoed his desire to have received supports such as respite care, in-home coaching on how to deal with their child’s behavioral issues, and resources for their other children. Parents also shared that life with their child with FASD did not really change after receiving a diagnosis.
   
   
3. Children’s experiences:
   
   The students in this study experienced: many foster or out-of-home placements throughout their lives; multiple deaths of family members (parents, siblings) associated with alcohol consumption; juvenile detention; school suspensions; and treatment facilities. These children’s experiences underscore the immediate and pressing needs of students with FASD.
   
   
4. Participants’ suggestions:
   
   The family members, educators and diagnostic team members provided the following suggestions for supporting the needs of students with FASD.
   
• Provide ongoing training and support to classroom teachers.
• Support families through respite care.
• Ensure students receive intervention to enhance their academic and social skills.
• Examine the disparity between services provided for students with Autism Spectrum Disorders and students with FASD.
• Build coordinated services across agencies to link a medical diagnosis with an educational and community-based assessment and intervention.
• Include FASD in special education research and program implementation agendas.
  
  
5. The “take home message:” What will turn the tide for students with FASD?
   • Trained and skilled teachers and caregivers.
   • Support to/for families (wrap-around services).
   • No diagnosis without treatment and intervention.
   • Create programs and services to meet the children’s and their families’ needs.
   • Build coordinated services across agencies to link a medical diagnosis with an educational and community-based assessment and intervention.
   • Include FASD in special education research and program implementation agendas.

In summary, we urge policymakers and practitioners to begin addressing the needs of our students with FASD. During the four years of this study, we noticed an increase in services for and to students with Autism Spectrum Disorders (ASD). Yet, many of our students with FASD live each day without the services and supports that they need. Iceberg readers may learn a great deal from advocacy organizations for individuals with ASD. We hope that in the coming years students with FASD and their families may look forward to the same services and programs as students with ASD.

References

Readers may address correspondence to Susan Ryan at the College of Education, 3211 Providence Dr., Anchorage, Alaska 99508. She can be reached via phone at (907) 786-4435; fax at (908) 786-4474; and e-mail at afsmr@uaa.alaska.edu. The author expresses her deep appreciation to the families who participated in this project as well as to the teachers and professionals who provided input.

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Rules for Living with Adults with FASD

By Renae Sanford

I first started working with people with FASD about 40 years ago, long before we had even heard of FAS, FAE, ARND, PFAS or any of the other alphabet soups we now associate with prenatal exposure to alcohol. This was also long before the wonderful people at the University of Washington in Seattle identified that prenatal exposure to alcohol caused a special set of problems for children.

I was working as a paraprofessional social worker for Big Sisters in Vancouver, British Columbia, Canada. The mere fact that I did not have a degree made me work extra hard to be aware of all of the latest in the field. For that reason I learned about the studies at the University of Washington very early on.

My caseload at that time included more than 300 little sisters and another 300 big sisters. In some of those cases we did not seem to have any success with the girls no matter what we tried. When the descriptions of FAS and FAE were published, the light bulb over my head went on and I had the big “AH HA” moment.

In later years I worked as an Addictions Counsellor in the First Nation in Northern Ontario and currently I am proprietor of a private home boarding and supporting adults with FASD. In both I have been faced with trying to help overwhelming numbers of persons with FASD.

As a result of this work from the late 1960s to the present, I have developed some skills for working with adults with FASD.

My style tends to be laid back, but with structure. I have very few rules for the people in my house. The rules are simple and direct:

1. No drugs or alcohol and no one under the influence of drugs or alcohol is allowed anywhere on my property.
2. No smoking in the house.
3. Everyone in the house bathes or showers, and wears clean clothes daily.
4. No perfumes or scents (I’m allergic).
5. No invasion of another persons’ space: This includes me. I never enter their rooms without first knocking and asking permission. And I never enter if they are not present.
6. Our home is sacred and we should think of it that way at all times.
7. I am in charge of all things at all times. These adults have often lived with chaos. They need to know that someone is in charge; it gives them a sense of security and family. They know in their hearts that they aren’t in charge.

The rules for me are a little more complex:

1. Respect and treat each person in the house as an adult and an individual.
2. Involve birth families whenever possible.
3. Don’t take ANYTHING said or done personally.
4. Honour my responsibility to protect the residents at all costs.
5. Foster growth of the individual, but don’t expect them to meet my expectations or even their own expectations.
6. Only ask them to do what they can succeed at. If I don’t think they can succeed, I don’t ask.
7. Don’t sweat the little stuff. It doesn’t really matter if someone is late for dinner. It matters that they made it home at all. It doesn’t really matter if someone can’t get out of bed every morning. It matters that they are alive. It doesn’t really matter if someone doesn’t pass in school. It matters that they haven’t killed someone today.
8. Love shows. I usually don’t love my guys when they first come to my home. They are usually not very lovable people when I get them off the streets. It is, however, important to show them the love that every person deserves. I have never had a tenant that I didn’t learn to love with time.
9. Always try to think outside the box.
10. Take care of myself. I try very hard to be aware of the least amount of stress. I am no good to these guys unless I am good to myself.
11. Our home is sacred and we should think of it that way at all times.

Renae Sanford is President of Wholistic Family Legacy Foundation in Salmon Arm, B.C., Canada. She can be reached at 250-833-4734 or renae_r@telus.net Renae is also a member and avid supporter of faslink.