Sarnia-Lambton agencies raising awareness about fetal alcohol spectrum disorder

An estimated 5,200 people in Sarnia-Lambton live with fetal alcohol spectrum disorder.

Just 63 with or suspected to have the invisible disability brought on by alcohol exposure in the womb receive supports through the FASD resource hub at Pathways Health Center

“When I began it, was less than half” that number, said Karen Holland, the family resource worker who helps with consultation, education, and coordinating supports for youth affected by the lifelong disorder, and their families.

Annual awareness events in September aimed at getting the word out about the disorder’s prevalence — four per cent of the population — giving people a chance to learn about assessment, diagnosis and supports are returning again this year, said Holland.

FASD is more prevalent than autism, cerebral palsy and Down syndrome combined in Canada, she said.

“But (there’s) still a lot of missed information and confusion regarding FASD and there’s also a lot of stigma attached to it,” she said.

“So, there’s the need for a really big push to kind of bring more awareness.”

Community service agencies within the 15-group Sarnia-Lambton FASD Network will be at a free community barbecue Sept. 13, 4:30 pm to 6 pm at the Point Edward Ex-Servicemen’s Club, available to answer questions about things like diagnosis and supports , she said.

The event also gives people a chance to connect with others, she said.

“It’s a very comfortable, safe place where people can come and have fun and get to know (one another).”

A similar information session is 2 pm Sept. 8 at the Forest Library.

Meanwhile, developmental pediatrician Clare Mitchell will be speaking on Sept. 21 from 5 pm to 7 pm at Pathways, talking about diagnosis, assessment and treatment.

Registration is available on eventbrite.ca.

While the talk is open to anyone, it’s targeted at doctors and clinicians such as speech language pathologists and occupational therapists, Holland said.

“We want to make sure everyone is really on board to know what maybe we should be looking at to see if this is a potential diagnosis, to try to give the best possible strategies and outcomes for people,” she said.

Pathways started receiving provincial funding in 2018 for the FASD resource hub, but there are no FASD-specific diagnostic clinics in Sarnia-Lambton, Chatham-Kent or Windsor-Essex, she said.

Diagnosis tends to be complex and difficult, she said.

“So, our area of ​​the province is kind of devoid of having, at the very least, a free clinic where someone would be able to go and get all of the assessments necessary (for diagnosis),” she said.

“I think what (Mitchell is) looking to do is she wants to give people a little bit of hope to say that there’s kind of a practical approach to looking at what is needed to get your diagnosis, and also how can you make sure you ‘re accessing appropriate treatment, so we can get the best possible outcome to people with FASD.”

Network officials will be wearing Red Shoes Rock t-shirts and red shoelaces throughout the month to spark conversations about FASD, she said, noting this year’s theme is uniting our strengths and finding solutions together.

Sept. 9 is International FASD awareness day.

“It’s the ninth day of the ninth month and it’s meant to represent nine months of a healthy pregnancy,” Holland said.

There is no safe amount, type or time to consume alcohol during pregnancy, she said, adding FASD is preventable if women and girls have the right supports.

Details about Pathways FASD resource hub are available by calling 519-542-3471 ext. 1304.

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