Understanding the Impairments of Fetal Alcohol Syndrome Victims

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Dr. Brian Leany, Ph.D.

 

As a forensic psychological evaluator, the bread and butter of your practice traditionally revolves around evaluations of competency and risk assessments. You might have the occasional evaluation of criminal responsibility or a mental health/substance abuse evaluation that offers someone the opportunity to receive treatment instead of time, but like most careers, the work quickly becomes routine. So, when I had the opportunity to evaluate an individual where the Public Defender had correctly tacked some cognitive deficits, I jumped at the chance to stretch my psychological legs beyond the routine.

As he ran down the case history with me, he noted that the mother was reportedly a chronic alcoholic, and that his client was removed from the mother at a very young age. As is standard practice, I had begun to conceptualize the case and identified some possible diagnoses to explore. I knew cognitive and achievement testing was necessary, but as with any forensic case there was also the potential of malingering and underlying personality disorders, which might better account for the defendant’s plight.

As the client walked into the room, I was immediately struck by his physical attributes. Small in stature and size, with narrowly set slits for eyes, flat and upturned nose, he had all the classic hallmark features of an individual with Fetal Alcohol Syndrome (FAS).  What struck me the most was that this defendant’s records only reported a mild intellectual deficit (formally known as mild mental retardation) and a possible learning disability. There was no discussion of even a provisional diagnosis for FAS (or Fetal Alcohol Spectrum Disorder; FASD) and only a passing mention of maternal alcohol use. Yet, when asked in that room about the possibility that his mother used alcohol during her pregnancy, he pointedly stated, “I was born drunk.” This statement was powerful, not just because of the truth behind the statement, but because the impact of that reality and the life it had yielded was lost on this man, who spent his life misdiagnosed.

This defendant in this situation is a classic example of what happens to nearly 60 percent of individuals with FASD who are charged with a crime and the 55 percent who lose their liberty through incarceration or involuntary hospitalization as a result of the disorder. He was removed from his mother at birth, temporarily, and permanently placed in foster care before entering elementary school. As a result of his deficits, and primal desire to be with his mother, he first withdrew completely (he told me of an effort to be placed back with his mother) and when that did not work, he acted out (which he said was an effort to leave no choice but to return him to his mother). By adolescence, he was known to the police, and he had been involved in several petty crimes. He was easily influenced, and often acted impulsively. When confronted to answer for his behavior, he would lie because he was expected to provide an answer. At age 17, he was convicted of a sex offense, and sentenced to juvenile hall. Not knowing any better, he freely shared his offense with other wards of the state, and was physically assaulted as a result of his charge. Again, this story reflects a common problem of impulsivity, lying because of memory deficits and a need to answer. Also, naiveté and victimization (or being easily influenced) are all too common behaviors in individuals with FASD. In fact, many behaviors that are problematic in the criminal justice system are so prominent, it’s been given a term: Non-compliant, Uncooperative, Resistant, Manipulative and Unmotivated or NURMU (Schacht & LaDue, 2003, p. 122). This is often how individuals with FASD are characterized within the criminal justice system.

At sentencing, the client tried to muster his best allocution, and given what I know about his cognitive abilities, it was reasonably eloquent (though occasionally cringe worthy). However, it was not the allocution that stood out to me, but the judge’s comments during the pronouncement of his sentence, reflective of his allocution. What struck me was one comment, “You sound very intelligent to me.” My heart sank when I heard that statement, because as a psychologist, a scientist and an educator, I had failed. If there was one point I wanted to convey more than anything else in the world, it was that this young man’s intellect was remarkably impaired, and impaired as a result of his mother’s choices. I had the objective data to prove it. He was moderately well-spoken, he was polite and he was appropriately groomed, but as he accurately pointed out, he only managed a GED because after several attempts, exam proctors likely helped him pass out of pity. This discrepancy between verbal abilities and true comprehension is a hallmark feature of FASD described by Schacht and Larue (2003).

Early identification and intervention are critical to reducing the risk that an individual with FAS will become a recidivate offender, and it is not as if the information is unavailable. Rather, there is a need to increase awareness and maintain awareness for FASD. To this end, national organizations, such as the Substance Abuse and Mental Health Services Administration (SAMHSA) and National Organization on Fetal Alcohol Syndrome (NOFAS), provide a wealth of information. The primary challenge for those with FASD in the criminal justice system is the appropriate identification of FASD. Two issues contribute to this misdiagnosis. First, the neurological insults and resulting behaviors are highly variable. We know that alcohol use is problematic during gestation, it is just that it is unreliably problematic, which leads to the second issue. Not all individuals develop the physiological malformations that are the hallmark of FAS. Rather, they more often demonstrate a behavioral problem that is attributed to general cognitive impairment and/or poor behavioral control. Thus, the behaviors that are observed are attributed to an issue of congenital heritance, and often a criminal mentality that is more accurately the result of a poisoning of an organism at the most critical times (that of neuronal development). Thus, awareness and training must occur not just at all levels of the justice system, but also in our academic and social services settings where we can best serve the individual and society.

At the point that these individuals enter the criminal justice system, we need to be aware of several potential logistical and procedural issues (e.g. issues of competency, accuracy of aggravating statements at or before arrest, underlying causes of behavior, etc.) as well as how the deficits of FASD can hinder attempts at justice and rehabilitation. Schact and LaDue (2003) suggest a number of interventions that support their assertion that individuals with FASD need structure, consistency, brevity, variety, and persistence (p. 122). Though I agree that probation and parole agents can be exceptional allies in the rehabilitation process, without proper training and information, they are not equipped to deal with the complex needs of an individual with FASD. Thus, their primary role with regards to FASD should be to modify their traditional means of supervision based on training for methods to improve the aforementioned needs. Additionally, they should be supported with appropriate community resources for intervention and monitoring of their compliance with prescribed treatment, such as group homes, case managers, vocational trainers and the like. In this capacity they can further ensure that the individual has received the maximum benefit of treatment, and capitalize on their opportunity to appropriately engage in adaptive behaviors in the community that will reduce the likelihood of remaining in the criminal justice system.

Within the criminal justice system, we need to do a better job of identifying and differentiating these individuals with FASD. As discussed, this requires ongoing training (for all professions involved) to not only help in this identification, but also how to best intervene when individuals with FASD are in the criminal justice system. In fact Schacht and Ladue (2003), in fact support incarceration, if necessary, as a means to impart the seriousness of the offense to the offender. However, they also describe the need of the court and its officers to act as advocates to ensure that these offenders with FASD, receive appropriate intervention after sentencing. A failure to do so can perpetuate the individual’s continuance in the criminal justice system. Identification and differentiation is a great start, but must be supported by highly structured plans for intervention that are specific to these individuals and reflect the research literature. In other words, we cannot and should not treat them as we would every other individual with an intellectual or learning disability.

It is unlikely that we will see a dramatic paradigm shift in the way that we identify and treat individuals with FASD in the criminal justice system. However, more deliberate consideration is needed regarding how to better serve the interest of justice as it relates to this group of individuals who are themselves victims, and who hold a potential, with the correct intervention, to live productive, integrated lives in the community.

Retrieved from: http://www.judges.org/understanding-impairments-fetal-alcohol-syndrome-victims/

Works Cited:

Schacht, R. M., LaDue, R. A., Tanner-Halverson, P., & Wilton, G. (2003). Fetal Alcohol Syndrome and Associated Disabilities. Institute for Human Development at, 928, 523-4791.

South Africa:’I didn’t know drinking would harm my child’ BBC News

‘I didn’t know drinking would harm my child’ BBC News

South Africa has the highest reported rate of babies born with foetal alcohol syndrome. Those born with the condition are often brain damaged and suffer developmental problems growing up.

The majority are from the Western Cape where poverty and unemployment, coupled with a culture of drinking, have led to the condition becoming so prevalent.

Retrieved from: http://www.bbc.com/news/video_and_audio/headlines/37217550

 

Regina: FASD conference is a first of its kind

FASD conference is a first of its kind

When Dorothy Reid’s adoptive sons were diagnosed with Fetal Alcohol Spectrum Disorder it was hard for her family.

FASD is a permanent disability that occurs when women drink alcohol during their pregnancy. It manifests in the children of those women through difficulties in decision and judgement making and reactions to social situations. This week a first of it’s kind FASD conference is being held in Regina.

For Reid she found herself having a hard time finding the right support services for her sons. As they grew up they wanted more independence.

“The services just were not available and the kids wanted to be independent. But it really was difficult to find the supports in the community to allow them to be independent successfully or to be supported,” Reid said.

As the years went on her sons struggled with school, drug addictions and gang involvement. When her youngest son was 23 he died of a drug overdoes.

“My older son is living in Vancouver now. It’s taken him a number of years but he’s living relatively successfully now,” Reid said.

Reid used to live in Saskatoon but now lives in Abbotsford, BC and has a masters degree in clinical psychology. She has worked in the worked in the federal correction system where she has encountered many people with FASD.

She is now involved with the Canada FASD Research Network and was instrumental in the planning of the organizations conference happening in Regina this week at the University of Regina. The conference is entitled “Learning Together” and is meant to bring researchers, people with FASD and their caregivers together to talk.

“(Researchers) don’t often have an opportunity to hear directly from caregivers about what are the priorities are in the field. So we felt that was really important to bring the two groups together to have that conversation,” said Audrey McFarlane, executive director of Canada FASD Research Network.

The conference is different from most. The first two days will include round table discussions between the groups. The last day will focus on what the government and policy peoples interests are in regards to FASD.

“At the end of it we hope to be able to produce a report that can be available to anyone in the research field that might be applying for future grants to look and say, ‘Oh these are the key priorities that families and government people need,” McFarlane said.

The conference is a first of it’s kind and Reid sees it as important to help those affected by FASD.

“If I had had access to the information (when my sons were younger) that I have now, I think the outcomes could have been quite different,” she said.

Retrieved from: http://leaderpost.com/news/local-news/fasd-conference-is-a-first-of-its-kind

FASD Awareness Day 2016: Focus on Social Media

FASD Awareness Day 2016: Focus on Social Media

Since 1999, FASD activists have held World FASD Awareness Day events on 09/09 to represent the nine months of pregnancy, often highlighted with a bell ringing ceremony at 9:09 am. September 9, 2016 is approaching, and this year activists want to use social media because it provides a unique and far-reaching means of building awareness.

You can help build FASD awareness by posting a message, reposting theirs, or bringing attention to their events on your own social media accounts.

FASD Awareness Day Share with CanFASD

Canada

This year Canada Fetal Alcohol Spectrum Disorder Research Network (CanFASD) is providing an online forum for organizations to post their initiatives on theCanFASD website. Include a description and a picture or video and they will re-post and Tweet it out to all of their followers. You can post using #FASDAwarenessDay #CanFASD and win prizes.

The Executive Director of CanFASD , Audrey McFarlane says “ CanFASD is very pleased to be able to highlight the fantastic work that the local communities are doing to raise awareness of FASD on September 9 as the local FASD service providers and caregivers are the hardworking folks that manage this work everyday.”

United States

NOFAS US has developed a FASD Awareness Day Packet for 2016 to assist organizations with planning activities for the month of September – FASD Awareness Month.

Their social media campaign includes:

  • A Twitter Chat using the hashtag #FASDMonth as well as offering tweets you can use to send out to others.
  • A one-time message commemorating FASD Awareness Day can be posted to your social media accounts using ThunderClap – a crowd-speaking platform using social media. Learn more here.
  • A campaign to create a video that will feature an inflatable globe being “passed” around the world. Click here to learn more about the campaign.

New Zealand

The University of Auckland is hosting a FASD Policy and Research Forum starting at 9 a.m. on FASD Awareness Day. Find out more here. To find more information, links, and downloads from New Zealand, visit the Fetal Alcohol Network NZ and the Ako Aotearoa learning website for the Pregnancy and Alcohol Cessation Toolkitfor providers.

Australia

NOFAS Australia is encouraging people to take a pledge not drink on Sept 9 and to post it on social media as a way to spread the word about FASD.

Also on the Pregnancy Birth & Baby website, there is a call to join the Pregnant Pause Campaign for FASD Awareness Day.

United Kingdom

The FASD Trust is asking people to get involved in a number of ways – raising awareness in school using the Trust’s School Pack, writing their MP. Click here to see their efforts.

To learn more about the history of FASD Awareness Day and get more ideas for events, click on FASD Awareness Day website.

Is your group, organization, or country planning a FASD Awareness Day event? Please share them in the Comments section below.


Previous postings about FASD Awareness Day

Today is International FASD Awareness Day, September 9, 2015

Today is International FASD Awareness Day, September 9, 2014

Retrieved from: https://wordpress.com/read/feeds/2380007/posts/1130905621

Australia: Blokes take a pregnant pause and don’t drink when your partner is expecting

Women aren’t the only ones who should take a break from alcohol during pregnancy Canberra obstetrician and ACT branch president, Professor Steve Robson, says.

Professor Robson has thrown his support behind Pregnant Pause, an initiative of the Foundation for Alcohol Research and Education, asking partners, other family members and friends to support mothers-to-be by not drinking during the pregnancy.

Pregnant Pause advocator Professor Steve Robson with new parents Andrew and Karina with their son Nicholas at John James ...
Pregnant Pause advocator Professor Steve Robson with new parents Andrew and Karina with their son Nicholas at John James Hospital. Photo: Rohan Thomson

After more than a quarter of a century in the baby delivery business, Professor Robson believes in some respects it is the best of times and the worst of times for mothers-to-be.

“On the one hand there is more information out there for expectant mothers than ever before,” he said. “On the other hand it is just too much for any one person to process.”

With social media and Google now competing with health professionals and other family members who have first hand knowledge of the birth experience it can be hard to sort out good advice from the bad.

With social media and Google now competing with health professionals and other family members who have first hand knowledge of the birth experience it can be hard to sort out good advice from the bad.

“That’s why we are trying to keep the [Pregnant Pause] message as simple as possible so it will cut through,” Professor Robson said.

“Nobody has any idea whether there is a safe level of alcohol use and it is extremely hard to get information about this. The only safe advice that we can give women is that they shouldn’t touch alcohol when they’re pregnant.

“As far as we know there is no safe level of alcohol consumption by an expectant mother during pregnancy. The only safe thing is to abstain.”

This can be hard for a mum-to-be if she is surrounded by family members and friends who are living it up and getting into the grog.

“We commonly see this; partners will be drinking; girlfriends will be drinking; they’ll go out for a night out and everyone around them will be drinking. It presents a huge temptation.

“One proven strategy is to have support around them; particularly their partner, also girlfriends and other family members.

“[It is really helpful if they say] we’re with you on this; we’re going to take a pause from drinking as well.”

Professor Robson said families should look for alternative ways to have a good time.

While Foetal Alcohol Syndrome, which can manifest in the form of severe and visible deformities and disabilities, was well known other consequences of alcohol use during pregnancy were harder to detect.

“It’s entirely likely a number of babies are affected in subtle ways that are very difficult to diagnose,” Professor Robson said.

“It can be difficulties in learning, it can be difficulties in behaviour. These can severely affect a child’s life, their ability to obtain an education and to fulfil their potential.”

Check out the Pregnant Pause campaign here: http://pregnantpause.com.au/

Retrieved from: http://www.canberratimes.com.au/act-news/blokes-take-a-pregnant-pause-and-dont-drink-when-your-partner-is-expecting-20160815-gqt2cg.html

 

 

 

FASD study creates a blueprint for understanding the role of epigenetics in neurodevelopmental disorders

FASD study creates a blueprint for understanding the role of epigenetics in neurodevelopmental disorders

NeuroDevNet researchers have made the first steps towards identifying an epigenetic signature for Fetal Alcohol Spectrum Disorder (FASD), drawing from the largest-ever study of children and youth exposed to alcohol before birth.

The multi-disciplinary group found a diverse pattern of DNA methylation that possibly indicates modified genetic expression in 110 children diagnosed with FASD, or known to have a history of prenatal alcohol exposure, compared to 96 age- and sex-matched controls aged 5-18.

“With this publication we are providing some deeper insights into potential mechanisms associated with FASD that had not been previously appreciated,” says NeuroDevNet Deputy Scientific Director James Reynolds. “We also provided evidence that may help explain the overlap between FASD and other neurodevelopmental disorders.”

The research entailed a complex analysis of genetic and epigenetic material collected from saliva samples and cheek swabs, together with a battery of neurobehavioral assessments. Six hundred and fifty-eight differentially methylated sites were identified, with 41 of these showing a methylation change greater than 5% – a common threshold for biological relevance.

“This is the first paper that takes the power of this large cohort and integrates detailed clinical observation, genetics and epigenetic data,” says Dr. Elodie Portales-Casamar, who was the Network’s neuroinformatics manager at the time the research was conducted. “All of our signal changes are subtle, though consistent, and statistically significant.”

Now an investigator within BC Children’s Hospital, she wrestled with the complexity of a massive data set looking at more than 2 million genetic markers and 450 thousand epigenetic markers.

Both depth and breadth of national expertise was necessary to produce the study. ASD research group co-lead Dr. Stephen Scherer, based at SickKids in Toronto ran the saliva samples, and Marie-Pierre Dubé at the Université de Montréal ran an analysis to identify potential candidate genes linked to FASD. Neuroinformatics lead Dr. Paul Pavlidis at the University of British Columbia made sure the statistical approach and methodology were rock solid, while Network investigator Dr. Michael Kobor performed and guided the DNA methylation analyses from his lab based at the BC Children’s Hospital.

Among the 16 co-authors were NeuroDevNet Investigator Dr. Albert Chudley, who has assembled an independent cohort to validate the study, and trainee Alexandre Lussier, who played a key role in the data analysis and preparation of the manuscript.

While the findings fall short of identifying a definitive biomarker for FASD to aid in early diagnosis, the researchers involved are encouraged. “All this information puts us closer,” says Reynolds.  “Now we’re down to a manageable number of candidates – a few dozen actual genes to investigate in more depth.”

Dr. Kobor is also pleased. “This is a very good start – it’s the largest study of its kind,” he says. “It sets a blueprint for what we could do in differentiating neurodevelopmental disorders in terms of methodology and approach. In FASD, we can use epigenetic tools to stratify – to characterize different profiles along the spectrum of FASD.

“With bigger cohorts and more coming online,” adds Dr. Kobor. “NeuroDevNet is primed to be a leader in that nationally – if not world-wide, in the three domains (FASD, autism and cerebral palsy) that we have.”

It is not yet known what mechanisms underlie alcohol’s impacts on the developing brain. Next steps in pursuing this understanding include the integration of massive data sets drawn from neuroimaging, together with these genetic findings. The sheer volume of data is daunting, Kobor and colleagues acknowledge, but advances in machine learning – computer programs that can teach themselves to grow and change when exposed to new data – hold promise for the future and the ability to “predict” FASD based on epigenetic patterns.

Retrieved from: http://www.neurodevnet.ca/news/fasd-study-creates-blueprint-understanding-role-epigenetics-neurodevelopmental-disorders

Pregnant? Think! Don’t drink.

Your baby drinks what you drink – if you are pregnant, think! don’t drink.

When a pregnant woman drinks alcohol while pregnant, the alcohol passes into her blood stream and spreads throughout her body.  As soon as the alcohol is in her body it passes into the placenta and passes to the baby through the umbilical cord.  This increases the risk of FASD.

 

Disclaimer:  The views and opinions in this video are those of the presenters’ and do not necessarily represent the views of the FASD Prevention Conversation.

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