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home / 世界杯决赛2022

new clinic to improve understanding of fetal alcohol syndrome

fasd is canada’s most common developmental disability, and also the most frequently undiagnosed.

by ottawa citizen

oct 5 2021
read time 4 minute read
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new clinic to demystify fetal alcohol spectrum disorder
l-r grant carioni, 12-year-old seth carioni, 13-year-old hayden carioni, and janet carioni, behind their east end home on sunday october 3, 2021. ashley fraser / postmedia
by: elizabeth payne
janet carioni knew what to look for when her two young sons began showing symptoms of fetal alcohol spectrum disorder (fasd). the occupational therapist had worked with a fasd assessment team before moving to ottawa.
not only did she recognize some of the potential symptoms, but she had an understanding of the disorder.
“it wasn’t something that scared me or my husband, or we were going to run away from.”
but many parents and even health workers don’t know what to look for or where to go for help. and some are afraid of what they might find.
fasd is canada’s most common developmental disability and also the most frequently undiagnosed, according to alex munter, president and ceo of cheo. it can occur when an unborn baby is exposed to alcohol. its effects can include physical, mental, behavioural and learning disabilities that vary from mild to severe.
it affects about four per cent of the population — higher among certain populations — but treatment is often hampered by stigma and a lack of understanding.
cheo is hoping to change that.
the children’s hospital has set up a new assessment and diagnosis clinic for fasd, something that should help make it easier for parents to have their children correctly diagnosed or to even assess adults without them having to undertake the time-consuming and costly effort of doing much of the work themselves.
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“i am lucky because i knew where to look and what to do on my own,” said carioni. “but not everyone does. most parents just know their child has difficulties. this clinic will help families get the answers they need.”
both of carioni’s adopted sons — now 12 and 13 — were diagnosed after she and her husband navigated getting the diagnoses themselves, including finding and paying for a private psychological assessment. those barriers contribute to the number of children and adults who remain undiagnosed or misdiagnosed.
in ottawa alone, more than 1,100 elementary students are estimated to be affected by fasd. until cheo’s clinic opened, there was no multi-disciplinary assessment service in the city. among other things, parents can refer their own children or obtain a referral to the assessment clinic, which takes care of needed psychological assessments.
“it takes a big burden off parents’ shoulders,” said carioni.
the team includes occupational and speech therapists, a social worker, psychologist, psychometrists and pediatricians.
historically, physicians alone have diagnosed fasd but it requires an approach that examines how the person is functioning in a number of different areas that involve different parts of the brain that might be damaged, said sue mendelsohn, the director of development and rehabilitation at cheo.
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certain facial features can also help identify fasd, she said, but they are not always present.
it is often incorrectly diagnosed as autism spectrum disorder or attention deficit disorder, she said.
part of the under-diagnosis relates to stigma. mothers might not know or want to admit they used alcohol during pregnancy. in many cases, said mendelsohn, damage can occur before a woman knows she’s pregnant. and it is not necessarily just an issue with birth mothers who have substance abuse problems.
“it can happen in many ways with very low volumes (of alcohol).”
carioni and her husband talk to their sons about their diagnoses, although they are shy to discuss it with their friends.
still, she said it is important for families and professionals to talk about it.
“i think it is tremendously important to talk about fasd openly.”
she said the “blame and shame” involved with prenatal exposure to alcohol has kept the disorder hidden and individuals undiagnosed for too long.
carioni notes that at least 50 per cent of pregnancies are unplanned and many mothers do not realize they are pregnant in the early weeks. in a society in which social drinking is common, there is little information about the dangers, she said. the world health organization advises that there is no safe level of alcohol use during pregnancy.

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in indigenous communities, fasd has been linked to the residential school system and assimilation policies.
it was the focus of several recommendations of the truth and reconciliation commission. calls to action 33 and 34 implore the national, provincial and territorial governments to address and prevent fasd and make changes to the criminal justice system to improve outcomes for offenders with fasd.
some research indicates that up to one-quarter of inmates in federal corrections could have fasd, although many are undiagnosed. indigenous peoples make up a disproportionate number of inmates in federal corrections.
getting diagnosed and putting supports in place, especially early in life, can be a game changer, said carioni.
“once you understand they have fasd and the behaviour is not intentional, we can put strategies in place to support them.”
because she had worked with children with fasd and other disabilities, carioni said she knew that was a risk factor when she and her husband adopted, and they were ready for that. despite the challenges, she said, her family is thriving.
“there are moments of great joy and happiness and we look like that picture perfect family. but, of course, there are moments when there are struggles and difficulties.”

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to help minimize those, carioni said her family tends to avoid big crowds and keep a strict routine, especially at bedtime.
she is optimistic about the future.
“i have many individuals in my life with fasd who are very successful, caring, loving people … who i look up to as role models,” she said. “just because you have fasd, it doesn’t mean your life is going to be on one track.”

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