It’s possible that I shall make an ass of myself. But in that case one can always get out of it with a little dialectic. I have, of course, so worded my proposition as to be right either way (K.Marx, Letter to F.Engels on the Indian Mutiny)
New approach to FASD in N.W.T. focuses on accommodation, not behaviour CBC March 6, 2020 A new wave of thinking on how to work with those who live with Fetal Alcohol Spectrum Disorder (FASD) has arrived in the Northwest Territories.
It aims to recognize FASD as a brain-based physical disability, with symptoms or effects expressed through undesired behaviour. But instead of a focus on correcting the behaviour, this "brain-based" approach is focused on accommodating the disability before the bad behaviour happens.
A three-day workshop in Yellowknife this week presented the approach to more than 150 parents, and front-line social, mental health, and justice workers in the N.W.T.
"Until recently … FASD has been understood as a condition," said Nathalie Brassard, the FASD consultant and facilitator with FASCETS Canada West who led the workshop.
"We knew what caused it, but we didn't really know quite what to do for the individuals…. We focused on … behaviours, not realizing that behaviours are only a sign for the root cause, which is a brain that functions differently."
It's estimated by the Centre for Addiction and Mental Health (CAMH) that one out of every 13 women who consume alcohol during pregnancy will deliver a child with FASD — a disorder with a range of mental, physical and behavioural effects that result from neurochemical and structural brain damage in the mother's womb. It can interfere with a person's ability to successfully function in daily life.
In Canada, the CAMH estimates that eight out of every 1,000 children have FASD, although rates are generally acknowledged to be higher in special populations, such as the child welfare system or the justice system. According to the Northwest Territories Health and Social Services Authority, there are no statistics on the prevalence of FASD in the territory, but between one and four per cent of the Canadian population is affected by the disorder.
A paradigm shift
Brassard described the change in focus — from behaviour correction to disability accommodation — as a paradigm shift.
Kate Kyle/CBC
"The importance is to realize who we have in front of us — to ask ourselves, who is this person? What do they need? How do they function or function differently? What's hard for them?" Brassard said.
"By providing accommodation and support, those behaviours that we've been focusing on reduce on their own, and diminish and disappear."
But accommodation will vary from person to person, said Shawna Pound, the territory's adult FASD program co-ordinator with the Northwest Territories Health and Social Services Authority. The trick is to identify what a person needs in order to overcome undesired behaviour, and then to put mechanisms in place to account for those needs.
As an example, she describes a person with FASD who is chronically late for work. That person may, through disability, lack the capacity to understand what is going wrong every day. For the rest of us, it might be obvious that the person needs to set alarms as reminders to get to work on time. What may be unique about the person with FASD is the inability to make that judgment call, to recognize there is a problem, and to set an alarm.
"They need someone to set the reminders up in their phone, or maybe they need a phone call," Pound said. "It'll look different for everybody."
Pound said that the three-day workshop this week qualified participants for formal facilitator training in the method. She said a few people have shown interest in the year-long training process, and her department would like to see the approach expand in the North.
Alcohol harm reduction experts are calling on the Government to urgently act on recommendations from nine witnesses who have detailed the multiple, serious and systemic failures by successive Governments to address the unequal harms to Māori from the lifelong disability of Fetal Alcohol Spectrum Disorder (FASD).
The witnesses will be heard by the Waitangi Tribunal on Monday and Tuesday, in support of a claim (WAI2624) submitted by Raawiri (David) Ratuu (Ngaati te Ata Waiohua, Waikato-Tainui, Ngaati Maniapoto) of Kookiri ki Taamakimakaurau Trust and member of The Health Coalition Aotearoa’s Roopuu Apaarangi Waipiro, Alcohol Expert Panel.
First, caregivers will describe the devastating, life-changing and on-going challenges and distress they face raising their loved ones with FASD, often with little to no Government support. Clinical practitioners and researchers will then present compelling evidence on the Crown’s breaches of Te Tiriti o Waitangi by failing to respond to the serious harm of FASD. This includes failures to measure the prevalence of FASD as well as providing specific and adequate funding for diagnosis and wrap-around disability support services for individuals and whānau.
Fellow Health Coalition Aotearoa Panel member and clinical neuropsychologist, Dr Valerie McGinn, is one of the witnesses presenting evidence next week. She says "the evidence to be presented will be upsetting to many - the implications of alcohol exposure in pregnancy have devastating, intergenerational effects. With an estimated one-half of all pregnancies being exposed to alcohol, as many as 1800 or more babies are born with FASD in our country each year. The damage to the brain from prenatal alcohol exposure leads to outcomes such as low educational achievement, mental health and substance abuse issues, early contact with the justice system, benefit dependence and premature death - including through suicide. With the right funding and support, these outcomes can be greatly reduced and persons with FASD and their whānau can thrive. FASD must be recognised as a stand-alone disability, eligible for disability support services. Other countries are leading the way, and Aotearoa New Zealand must follow suit."
"The Waitangi Tribunal claim and witnesses present clear solutions for change. Proper regulation of alcohol is also imperative to reduce the number of babies born with FASD each year. Weak regulation has resulted in the oversaturation of alcohol outlets across many communities, low alcohol prices, and sophisticated advertising to target young people and those of child-bearing age" says Panel member Dr Nicki Jackson.
"The persistent lack of regulation of alcohol has enormous, lifelong consequences. Our pro-drinking environment drives inequities in alcohol use and harm, including the lifelong disability of FASD. We, as the Health Coalition Aotearoa Alcohol Expert Panel, urge the Government to implement effective regulation of our most harmful drug. They have a duty to create healthy environments that support alcohol-free pregnancies. We want every child to have the opportunity to reach their full potential", ends Dr Nicki Jackson.
First experimental study to propose a therapy to correct memory deficit caused by disorders in the fetal alcohol spectrum
Research conducted in a mouse model identifies the neurobiological mechanism responsible for alterations in the memory of young individuals exposed to alcohol during pregnancy and lactation. This study proposes a therapy that can reverse the deficit
IMAGE: FROM LEFT TO RIGHT: INÉS GALLEGO, ANTONI PASTOR, ALBA GARCIA-BAOS, OLGA VALVERDE AND RAFAEL DE LA TORRE. CREDIT: UPF.view more
CREDIT: UPF
A research team of the Department of Medicine and Life Sciences (MELIS) at Pompeu Fabra University (UPF) involving the Hospital del Mar Research Institute has for the first time, in mice, identified and validated the neurobiological mechanism and therapy to correct memory deficit in individuals with fetal alcohol spectrum disorders (FASD). These results pave the way for studying whether the mechanism is the same in humans, which would enable improving the diagnosis and treatment of affected individuals.
Fetal Alcohol Spectrum Disorder (FASD) includes a number of conditions suffered by infants who have been exposed to alcohol during pregnancy. The effects of FASD range from craniofacial morphological malformations or growth problems, in the most severe cases, to hyperactivity, emotional and motivational difficulties or defects in learning and memory, in the mildest cases.
“In children of normal appearance, FASD is underdiagnosed and is often mistaken for hyperactivity or ADD”, explains Rafael de la Torre, coordinator of the Integrated Pharmacology and Systems Neuroscience Research Group at the Hospital del Mar Research Institute. “Since there is no diagnosis, there is no treatment, and symptomatic therapy is given to alleviate hyperactivity or other disorders such as anxiety”.
The results of the study published in the journal Molecular Psychiatry, have allowed the researchers to observe that “exposure to alcohol need not be chronic for FASD to occur. Sporadic consumption ending in intoxication - getting drunk- is enough to observe alterations in memory, in mice”, explains Olga Valverde, study coordinator and director of the Research Group in Behavioural Neurobiology at the MELIS-UPF.
The study shows that mice born to mothers that have consumed alcohol sporadically during pregnancy and lactation have a memory deficit that persists into adulthood. One of the reasons for this deficit is that alcohol affects the function of the endocannabinoid system, reducing the expression of the PPAR-𝛄 receptor.
“The endocannabinoid system is greatly involved in learning and memory processes”, de la Torre explains. “That is why it is especially relevant that this decrease occurs during infancy, when the mice, male and female, are of learning age”. However, the reduction in PPAR-𝛄 does not occur throughout the brain. It is limited to the hippocampal astrocytes -cells that support neurons controlling functions such as their metabolism or the inflammation to which they are subjected- of the hippocampus.
After confirming the neurobiological mechanism by three different routes, the study also proposes an effective treatment with the drugpioglitazone, commonly used to control sugar and which stimulates PPAR receptors. According to the first author of the study, AlbaGarcia-Baos, “manages to alleviate the cognitive memory deficitsof individuals with FASD in infancy”.
Optimism regarding studies in humans
The results of this study pave the way for studying the effects of other cognitive impairments caused by alcohol exposure during pregnancy. “In this work we have only studied alterations in memory, but there may be emotional, motivational or behavioural alterations related to FASD”, points out Valverde, who is also a full professor of Psychobiology at UPF.
Although this study has been conducted in mice, the researcher is optimistic about confirming that this mechanism is replicated in humans “because we are two species of mammals that share many similarities”. In addition, if confirmed, “it would be relatively simple to carry out a study to validate whether the therapy we propose works in humans, since there are drugs that have similar effects to the ones we have used that are approved for use in children”.
Thanks to his Gladue report, Blaine Hotomanie is now serving a reduced six month sentence in jail after being found guilty of impaired driving. He's seen here in Carry the Kettle Nakoda Nation, Sask., in early January, before he started his sentence (Richard Agecoutay/CBC News)
Blaine Hotomanie's Gladue report did more than reduce the time he'll spend behind bars.
"It changed my life, the way I look at things," he said. "I've got a big family and I want to show my grandchildren not to drink and drive. I talk to them about it."
Gladue reports present circumstances of a self-identified Indigenous accused's life for a judge to consider while deciding on a sentence. These can include personal and community histories, and traumas such as colonialism and its ongoing impacts.
Even though Gladue reports are a right for every Indigenous person who appears in court — thanks to two court decisions from 1999 and 2012 — not everyone is aware of their right to them, or has access to Gladue report writers. Saskatchewan in particular ranks near the bottom of the country for the use of Gladue reports, according to data from the Aboriginal Legal Society, which intervened in the landmark 1999 court case.
Gladue reports are time-consuming and resource-intensive, but in late 2020 the Integrated Justice Program (IJP), which is funded by Public Safety Canada, created a team of legal experts and people who study and work with people with fetal alcohol spectrum disorder (FASD), entirely focused on writing the reports for Saskatchewan trials.
WATCH| What are Gladue reports?
What are Gladue reports?
9 hours ago
Duration2:51
Gladue reports explain an Indigenous person’s history, their families history and their community's history to the courts to take the individual’s unique circumstances and challenges into consideration. 2:51
Advocates say the writing team is allowing more people to get the Gladue reports they are entitled to.
Michelle Stewart and Robyn Pitawanakwat, members of the Integrated Justice Program, seen here working on laptops at the University of Regina, are part of a team that writes Gladue reports for people with fetal alcohol spectrum disorder. (Bryan Eneas/CBC)
Hotomanie, 57, from Carry the Kettle Nakoda Nation — roughly 80 kilometres east of Regina — had at one point been facing 18 months for impaired driving last spring. After his Gladue report, which presented factors including his FASD, Hotomanie's sentence was reduced to six months.
Over the course of three days of three-hour interviews for his Gladue report, Hotomanie shared the pains he faced growing up. He experienced a lot of violence as a child in a home where both his parents drank. He lost loved ones — particularly his parents — and was in the residential school system.
It wasn't until his interviews with the IJP that Hotomanie learned how these traumas impacted him.
Now, with a large support network consisting of his wife, his six children, 25 grandchildren, friends and leaders in Carry the Kettle, he's more worried about his future than his sentence.
"I've got all that stuff out and I'm doing better. I've got a job. I've never had a job for a long time," he said.
"I'm kinda hoping that I can save my job, but time will tell."
Representing the most marginalized
The IJP was launched in 2019. It is a joint initiative run by the Fetal Alcohol Spectrum Disorder Network and File Hills Tribal Council. The program focuses on comprehensive support for Indigenous people with FASD in Saskatchewan.
IJP launched the team focused on writing in-depth Gladue reports in fall 2020.
Hotomanie said he didn't know what a Gladue report was until he met Michelle Stewart and Robyn Pitawanakwat from the IJP.
Stewart, an expert on FASD, is the IJP's project lead and Gladue project coordinator, while Pitawanakwat is the program's coordinator, runs the organization's frontline services and conducts Gladue interviews.
"These are often the most marginalized people within the justice system," Pitawanakwat said.
"We work with them because their disability [FASD] isn't understood, and their disability often makes them more vulnerable to charges, where someone else who presents differently would probably not be charged."
Stewart, an associate professor at the University of Regina, said the initial goal was to work directly with people with FASD to ensure their complex needs were being met.
"Our goal is to expand that circle of support for them, because we're talking about individuals that experience compounding forms of marginalization and alienation," Stewart said.
Stewart and Pitawanakwat said their work — building relationships to learn about someone's traumas, personal and familial history, taking the time to understand those subjects, then preparing the reports — is an effort toward reconciliation within Saskatchewan's justice system.
Pitawanakwat, the Integrated Justice Program's lead interviewer, seen here at the University of Regina, said those involved feel supported in what they do and those who've participated felt the process was good for them. (Bryan Eneas/CBC )
The Truth and Reconciliation Commission's 34th call to action calls on governments, "to make changes to the criminal justice system to improve outcomes for offenders with Fetal Alcohol Spectrum Disorder (FASD)."
Pitawanakwat said IJP writers provide courts with important context. Many of the interviewees have been separated from their families and peers, Pitawanakwat said.
"One of the strongest ways that we can push back against colonialism is to bring families back together; to bring people home and keep them home whenever possible," Pitawanakwat said.
Hotomanie's report did just that, allowing him to stay in Carry the Kettle a bit longer before he was incarcerated. He will also be able to reconnect with his family sooner, due to the reduction in his sentence the judge granted after reading the report.
Program's work greatly needed
The IJP team has completed more than 30 Gladue or pre-sentencing reports in Saskatchewan as of January 2022, Stewart and Pitawanakwat said.
Gladue reports can take weeks to months to complete, due to resource constraints within the justice system. The IJP's team-based approach has dramatically reduced turnaround times in Saskatchewan, where the need for the program is great.
The province ranks near the bottom when it comes to using Gladue reports in court, said Jonathan Rudin, the program director for Aboriginal Legal Services.
Jonathan Rudin, Aboriginal Legal Service's program director, said most Gladue reports completed in Saskatchewan are privately funded. He's seen here speaking at a lectern at Lakehead University. (Amy Hadley/CBC)
"In most parts of Canada where there are Gladue reports, the provincial government in particular, or the provincial legal aid plan, steps up with funding," Rudin said.
"In Saskatchewan the provincial government does not seem inclined to provide that funding at all."
Data provided by the Ministry of Justice showed that the provincial government paid a combined $78,080 for 24 Gladue reports over the past five years. That data doesn't include reports by independent agencies like the IJP.
In the 2019-2020 reporting year — the last time the province covered the costs for Gladue reports — the government paid for two reports. In the 2018-2019 reporting year it paid for 10, the most in the five years of data provided.
In the 2020-2021 reporting year, it paid for none.
Rudin said that, aside from IJP reports, the few cases where Gladue reports were completed in the province were primarily privately funded. In just a few instances, courts were asked to provide the money or ordered the government to provide the money.
Government support needed, expert says
Jane Dickson, who trained Stewart in Gladue writing and is currently a professor of law at Carleton University, said there shouldn't need to be independent agencies doing Gladue reports, as the Supreme Court of Canada has ruled every Indigenous person should be granted one.
"If government stepped up and adequately funded Gladue we wouldn't need to find these creative solutions to secure funding," Dickson said.
She said in Saskatchewan and many other parts of Canada, courts take it upon themselves to decide whether or not they have the right amount of information to determine someone's fate.
Stewart, left, the Integrated Justice Program's lead, seen here at the University of Regina, said a variety of different people participate in the practicum program offered through the IJP, which in turn spreads the knowledge and style of Gladue writing the team offers. (Bryan Eneas/CBC)
In Saskatchewan, the Ministry of Justice said courts were committed to using "relevant Gladue information" in pre-sentencing reports completed by community corrections staff like parole officers.
"Community corrections has made a concerted effort to heighten awareness of Gladue factors and provide Gladue information in pre-sentence reports," the ministry's statement said.
Dickson said legal professionals would rather see full Gladue reports like those being done by the IJP, but there is too much demand. She's working with organizations across Canada on a team-based approach like what the IJP is doing in Regina.
"The model is absolutely generalizable across the country," Dickson said.
A success, so far
Pitawanakwat said while some of the reports the IJP did were more beneficial than others, the program was successful so far because the people involved feel supported in their work.
Most importantly, Pitawanakwat said the clients involved in the program seemed to feel the process was good for them and judges seem to be recognizing the reports are well researched and well written.
Hotomanie says he was a bit nervous about his six month sentence, though he was mostly more worried about being able to return to his job in Carry the Kettle when he comes home. (Richard Agecoutay / CBC News)
Hotomanie said he felt comfortable during the interview process. When things got tough and he became emotional, the group pressed pause and agreed to continue the next day when he felt better.
He also felt as though he got to know Pitawanakwat and Stewart through the process as much as they got to know him.
The final report made him feel understood by the courts in a way the justice system never had.
"I wasn't just a person who was getting caught for impaired [driving], I felt good about myself," Hotomanie said.
Bryan Eneas is a journalist from the Penticton Indian Band currently based in Regina, Saskatchewan. Before joining CBC, he reported in central and northern Saskatchewan. Send news tips to Bryan.Eneas@cbc.ca.
Tuesday, February 04, 2025
Fetal alcohol spectrum disorders (FASD)
How prenatal alcohol exposure affects behavior into adulthood
Rodent study identifies a brain circuit that is disrupted by alcohol exposure during prenatal development and contributes to poor decision-making in adulthood
Fetal alcohol spectrum disorders (FASD), characterized by symptoms of cognitive decline, such as worsened memory and impaired decision-making, are alarmingly prevalent globally. In a new study in JNeurosci led by Amy Griffin at the University of Delaware, researchers used rats to find brain circuits that may contribute to the cognitive issues that FASD patients experience, with the end goal of informing treatment strategies. Brain regions linked with working memory and decision-making were damaged in baby rats following exposure to alcohol during the age equivalent of the third trimester of pregnancy. After these rats aged into adulthood, Griffin and colleagues recorded from their brains while they performed tasks related to memory and decision-making. Rats showed impaired decision-making behaviors that were associated with disrupted communication between damaged brain regions. The researchers also developed a machine-learning algorithm that could accurately predict whether rats were exposed to alcohol or not based off their behavior alone. This study points to a brain circuit that is disrupted by third trimester alcohol exposure and contributes to FASD-like cognitive impairment in rats, which is informative for future research aiming to improve treatment strategies, according to the authors.
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Manuscript title: Choice Behaviors and Prefrontal-Hippocampal Coupling are Disrupted in a Rat Model of Fetal Alcohol Spectrum Disorders
JNeurosci, the Society for Neuroscience's first journal, was launched in 1981 as a means to communicate the findings of the highest quality neuroscience research to the growing field. Today, the journal remains committed to publishing cutting-edge neuroscience that will have an immediate and lasting scientific impact, while responding to authors' changing publishing needs, representing breadth of the field and diversity in authorship.
About The Society for Neuroscience
The Society for Neuroscience is the world's largest organization of scientists and physicians devoted to understanding the brain and nervous system. The nonprofit organization, founded in 1969, now has nearly 35,000 members in more than 95 countries.
Out of 206 fourth-grade students, 19 met criteria for fetal alcohol spectrum disorders, according to a pilot study at the University of Gothenburg. The results indicate that birth defects caused by alcohol consumption during pregnancy may be as common in Sweden as in several other European countries.
The study ran at six schools in western Sweden and constituted an add-on to the regular health check-up for all fourth-grade students. The participants underwent a physical examination, review of medical records and psychological tests of memory, attention, and problem-solving ability. Parents and teachers described the children's behavior and school performance, and the mothers were interviewed about their dietary habits and alcohol consumption during pregnancy.
Larger study needed
Of the 206 participants examined, fetal alcohol spectrum disorders (FASD) were found in 19 children. Ten had alcohol-related neurobehavioral disorder, four had partial fetal alcohol syndrome, and five had the most severe variant, fetal alcohol syndrome (FAS). The overall prevalence of FASD in the study group was 5.5 percent, of which 2.4 percent concerned FAS.
Leading author in the study is Valdemar Landgren, psychiatrists and researcher at Sahlgrenska Academy and Gillberg Neuropsychiatry Centre at the University of Gothenburg:
"Conducting the study in school as an add-on to the regular health check-up proved feasible. Our study is small, so a large-scale national study is needed to obtain a fuller picture. If the results are replicated, it would indicate that Sweden is on a par with many other European countries", he says.
Few diagnosed
There are no prior studies investigating the prevalence of FASD in Sweden. According to nationwide statistics from Sweden's National Board of Health and Welfare, only about 60 children receive such a diagnosis each year.
Leading author in the study is Valdemar Landgren, psychiatrists and researcher at Sahlgrenska Academy and Gillberg Neuropsychiatry Centre at the University of Gothenburg:
"Today, these conditions are rarely diagnosed in Swedish healthcare. One reason may be that physicians don't assess for conditions of which they are unaware or believe to be very rare. Empirical knowledge about the actual prevalence is of importance for medical education and diagnostics, and for society to be able to work preventively," says Valdemar Landgren.
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