Red Shoes Rock: Take Up The Challenge This Summer

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Thanks to our friends at Red Shoes Rock (https://www.facebook.com/RedShoesRock/), we will be taking up their challenge this summer in sporting red shoes as we roll, step, kick, nod, wave, blink, and run to build awareness around Fetal Alcohol Spectrum Disorder (FASD) in an aim to make Edmonton and surrounding area the most FASD friendly city in Canada.

Stay tuned for more details but get your Red Shoes ready to Rock On!

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New Prevalence Estimates of Fetal Alcohol Spectrum Disorders Range From 1 to 5 Percent in U.S. Communities

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A study of more than 6,000 first-graders across 4 U.S. communities has found that a significant number of children have fetal alcohol spectrum disorders (FASD), with conservative rates ranging from 1 to 5 percent in community samples. The new findings represent more accurate prevalence estimates of FASD than prior research. Previous FASD estimates were based on smaller study populations and did not reflect the overall U.S. population.

The term FASD represents a range of health effects caused by prenatal alcohol exposure. Individuals with FASD may experience growth deficiencies, facial abnormalities, and organ damage, including to the brain. The effects of prenatal alcohol exposure on the brain can result in deficits that contribute to physical, cognitive, behavioral, and social challenges throughout life.

“Prenatal alcohol exposure is a leading preventable cause of developmental disabilities worldwide,” says George F. Koob, Ph.D., Director of the National Institute on Alcohol Abuse and Alcoholism (NIAAA). “Estimating the prevalence of FASD in the United States has been complex due to the challenges in identifying prenatally exposed children. The findings of this study confirm that FASD is a significant public health problem, and strategies to expand screening, diagnosis, prevention, and treatment are needed to address it.”

The study was conducted by the Collaboration on FASD Prevalence (CoFASP) consortium, which studies the prevalence of FASD among U.S. schoolchildren. Before the study began, consortium members established standardized classification criteria for FASD based on facial features, growth, and neurodevelopmental performance. The findings from the study, which was led by Philip May, Ph.D., of the University of North Carolina at Chapel Hill’s Nutrition Research Institute in Kannapolis, and Christina Chambers, Ph.D., of the University of California San Diego School of Medicine, were reported in JAMA in February.

Researchers collected data between 2010 and 2016 on 6,639 children in 4 communities from the U.S. Midwest, Rocky Mountain, Southeast, and Pacific Southwest regions. The sites were selected to be more reflective of U.S. community populations than previous studies. At each site, first-graders in public and private schools were recruited across two academic years and evaluated based on the FASD criteria. Prenatal alcohol exposure was assessed by interviewing mothers or other close relatives.

The researchers found that the prevalence estimates for FASD among the selected sites ranged from 1.1 to 5 percent. This was the most conservative estimate and assumed no additional cases of FASD would be found in first-graders who did not participate in the study. When the researchers used a “weighted prevalence,” an estimate that accounts for those who were eligible but did not participate in the study, the estimated prevalence of FASD was higher—ranging from 3.1 to 9.8 percent among the study sites. Of the 222 children diagnosed with FASD in the study, only 2 had been previously diagnosed with FASD, although many parents and guardians were aware of the children’s learning and behavioral challenges. This finding suggests that children with FASD often go undiagnosed or misdiagnosed.

“We believe our study is the first to use school-based assessments, a common methodology and classification system, and expert in-person evaluations for the full range of FASD on many children from communities across the United States,” says Dr. May.

“This comprehensive approach should reflect estimates that more closely resemble the prevalence of FASD in the United States, and further highlights the public health burden of FASD,” adds Dr. Chambers.

Estimating the prevalence of FASD is challenging, in part, because FASD can be difficult to distinguish from other developmental disorders that share certain learning and behavioral deficits. Also, individuals can have FASD without the hallmark facial features of fetal alcohol syndrome.

Most previous studies of FASD prevalence in the United States have been conducted using surveillance or clinic-based studies, which misses undiagnosed cases of FASD and leads to underestimates. Studies have also been conducted among high-risk populations, which results in prevalence rates that cannot be generalized to the population as a whole.

The previously accepted FASD estimate of 1 percent of U.S. children resulted from clinic-based studies and studies of single communities, which assessed small samples among selected populations.

“Because of the hidden nature of the disabilities, some have continued to believe that FASD is a rare disorder, or they question its prevalence,” says Tom Donaldson, President of the National Organization on Fetal Alcohol Syndrome (NOFAS).

“I would say this research truly once and for all firmly established the magnitude of FASD. It’s now really time for us to push forward and make this study the catalyst for change and progress.”

Soon after the findings were published in JAMA, the lead study authors, NIAAA experts, and FASD advocates came together to discuss the significance of the study. A recording of the teleconference is available at:
https://www.niaaa.nih.gov/news-events/news-noteworthy/teleconference-prevalence-fetal-alcohol-spectrum-disorders-among-us.

Reference:
May, P.A.; Chambers, C.D.; Kalberg, W.O.; Zellner, J.; Feldman, H.; Buckley, D.; et al. Prevalence of fetal alcohol spectrum disorders in 4 U.S. communities. JAMA 319(5):474–482, 2018. PMID: 29411031

Tuesday’s Tip: Feeling Things Differently

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Children and youth with FASD may have differences with the way they interpret sensory information. They may show signs of being hyper-sensitive (feeling things too much) or being hypo-sensitive (not feeling things enough) to the senses of touch, taste, smell, sight and sound. Children may be hyper-sensitive in one area, but hypo-sensitive in another. For example, a child might be over-sensitive to light, but under-sensitive to touch.

Hyper-sensitive children can easily feel everything. For example, clothing tags scratch, bright sunlight blinds, spicy food burns, loud intercoms startle.

Hypo-sensitive children have a difficult time feeling. For example, they may have a high pain threshold, not feel hot or cold, hold a pencil tightly and push hard onto the paper to see the pencil make a mark. 

Often as the environmental stimulus increases or decreases, so may the child’s behaviour.

Teach your child to recognize their sensory issues and encourage them to ask for things that will help, such as sunglasses or turning down the volume. 

Remember, it’s about trying differently not harder. If something does not work, try something else!

The Prevention Conversation: An online curriculum

Check out the new online FASD Prevention Conversation training! Cost $125.00

The Prevention Conversation: A Shared Responsibility Project

cropped-letstalk3-1.jpgcropped-letstalk1-121.jpgThe Prevention Conversation is an online training program for front-line health and social services professionals to provide them with the knowledge, skills, and confidence to engage their clients/patients in a supportive and non-judgmental conversation about alcohol use during pregnancy, its lasting effects on the developing child, and resources and supports available to women of childbearing age.

This course discusses FASD prevention by providing information about the risks of alcohol use during pregnancy as well as considerations to support women in a way that promotes healthy relationships with professionals and promotes safety and health in all facets of their lives.

By completing this training course, facilitators will:

  • Have an understanding of the FASD Prevention Conversation: A Shared Responsibility program; it’s history and evolution;
  • Understand the complex reasons why a woman may drink when pregnant and have the tools to support conversations with pregnant women;
  • Be able to apply and tailor the…

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FASD and Mental Health

f28df-1445359631870FASD and mental health are intrinsically linked. Take a peek at some of CanFASD‘s research on the relationship between FASD and mental health.

Resources & Publications


Fetal alcohol spectrum disorder (FASD): A beginner’s guide for mental health professionals — FASD can feature a diverse range of impairments in cognitive, social, and adaptive functioning. These impairments are often accompanied by co-occurring mental illness, behavioral disorders, substance use, traumatic brain injuries, and developmental disabilities. The presence of these co-occurring conditions creates significant challenges for mental health professionals in terms of screening, assessment, differential diagnosis, and treatment. The key to maximizing the effectiveness of care for clients requires treating each individual’s unique risks and needs in an integrated service delivery framework. Unfortunately, there is typically a lack of expertise in FASD among mental health professionals, which can only be resolved by the increased availability of advanced education and training programs on FASD. To increase awareness of these needs and FASD in general, this article provides general information on the definition and symptoms of FASD, the screening and assessment of FASD, adaptive functioning and memory-related considerations of FASD, and the treatment of FASD.

Toward Quality Mental Health Services in Canada: A Comparison of Performance Indicators Across 5 Provinces — In 2015, the Graham Boeckh Foundation (GBF), in collaboration with the Canadian Alliance on Mental Illness and Mental Health (CAMIMH), initiated a project to test the feasibility of creating and reporting on a small number of mental health and addictions services performance indicators that could be compared across provinces. A team of mental health and addictions scientists from ve provinces (British Columbia, Alberta, Manitoba, Ontario and Québec) developed and generated the measures, where possible for ages 10 years and up, using data already available from the healthcare systems. This is the Summary Report. A full Technical Report is available at https://www.sfu.ca/carmha/publications/prov_indic_2017.html

Caregiver Needs and Stress in Caring for Individuals with Fetal Alcohol Spectrum Disorder: Lay Summary

FASD, Stress and Mental Health

Addiction and Mental Health Care: Resources to Support Collaboration — The Canadian Centre on Substance Abuse (CCSA), the Mental Health Commission of Canada and the Canadian Executive Council on Addictions have collected a list of examples and resources to support collaboration between addictions and mental health systems and service delivery in Canada.

Jeff Noble: Making Sense of FASD Episode 2 Colette Philcox

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In Episode 2 Jeff talks to Colette Philcox. Colette is an adult with Fetal Alcohol, who went from the streets to success!

Tuesday’s Tips: Changing Our Way of Thinking

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Some people may become offended when it is suggested that their child cannot do something. They see this as giving up on their child.

There is a distinction between giving up on your child versus giving up on trying to make them do things they cannot do.

A child and youth with FASD benefits most by learning coping or adaptation skills that accommodate their strengths and challenges.

Therefore we need to change our thinking away from traditional management, applying consequences and changing people to recognizing brain differences, presenting issues, and changing environments.

Remember, it’s about trying differently not harder. If something does not work, try something else!

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