Stigma of FASD makes diagnosis difficult

Freelancer Melissa Jameson writes about the stigma surrounding FASD after adopting her son.

September is Fetal Alcohol Spectrum Disorder (FASD) Awareness Month. FASD is an umbrella term, with several diagnoses. Current research states it can be caused by a mother drinking any amount of alcohol during pregnancy. Besides being preventable, FASD also comes with a huge amount of stigma.

I would know. My son, Ethan, has FASD. When I choose to tell people about his disability, I have learned to follow it up with “but he’s adopted.” I say this because within our society many maintain the belief that a woman has to drink heavily during pregnancy, or be an alcoholic in order for her child to have FASD.

Revelstoke Secondary School resource teacher Dana Reaume, agrees there is a significant stigma which remains a prevalent issue, particularly surrounding the pre-natal alcohol use by women.

“Because FASD’s cause is known and it is ‘preventable,’ the stigma and shame surrounding the diagnosis is strong,” said Reaume. “Many biological parents are very reluctant to talk about it as they know they will be faced with the shame.”

Sadly, it is this shame and a lack of trust which can make it difficult for school and other care teams to make an official diagnosis of FASD. Reaume goes on to further say that building trusting relationships with caregivers and school-based resource teams is vital.

“With a trusting and non-judgemental relationship each person in the care team can share in a way that reduces shame and creates inter-connectedness,” she said. “This trust and relationship then allows parents and educators to have real, honest conversations around the best plan for the youth.”

Nadine Moore, an FASD keyworker based out of Salmon Arm, but who regularly visits families with children who have FASD in Revelstoke, also spoke about the stigma behind the diagnosis – particularly the judgment faced by children living with the disability.

“[It can] look like the child is being ‘bad,’ lazy, or not trying hard enough when in reality it is the nature of FASD and its difficulties are to blame,” she said. “FASD is an invisible disability because the children often look no different than others their age, and all you see is behaviour. The behaviours are the symptoms.”

There are primary and secondary symptoms related to FASD, said Moore. Primary symptoms are the permanent changes in the brain. Among these are: poor working memory, slower processing speed, poor impulse control, and understanding ownership and emotions.

Secondary symptoms are ones that Moore says are “behaviours that occur when we don’t support our children with FASD and are preventable.”

“These symptoms can include storytelling (often seen as ‘lying’), mental health issues, chronic frustration, and even difficulties with the legal system as people with FASD get older,” she said.

The solution, Moore says, is to change how we view those living with FASD. “Once a person shifts their thinking from ‘this child won’t,’ to ‘this child can’t,’ they are more able to get the support they need and succeed,” she said. “FASD is difficult for people to understand because they can’t ‘see it.’”

The key to understanding FASD, says Moore, is realizing that “every person has strengths and gifts.”

“By supporting these strengths, having a lot of patience, and giving children the benefit of the doubt when they are having a hard time [individuals] can better support a child with FASD and make a difference in their lives,” she said. “Although the effects of FASD are permanent (they don’t grow out of it), if we continue to support them through their entire lives, they can grow up to be successful.”

Moore also said the key to preventing FASD is supporting all women, especially those who are pregnant. While it is a woman’s use of alcohol during pregnancy which is the cause of FASD, there is also new research evolving around paternal (the dad’s) alcohol use.

“There is evidence to support that paternal drinking is related to learning disabilities, ADHD, low birth weight, spontaneous abortion and infertility among offspring. More research is required to get a better idea of these effects.”

As for my son, I am teaching him to advocate for himself by recognizing how having FASD impacts his ability to be successful. I’ve gotten used to rattling off a list of instructions for him, only to have him look at me and say, “Stop! One thing at a time!” because he has learned that his brain can’t process more than that.

It’s also a learning curve for him, as prior to living with me, no one had explained his diagnosis to him.

“It’s new to me. I’m learning what it means,” he said.

***

Fetal Alcohol Spectrum Disorder (FASD) is an umbrella term (similar to Autism Spectrum Disorder). Within the FASD umbrella are several diagnoses including, according to the Public Health Agency of Canada:

— Fetal Alcohol Syndrome (FAS)

— partial FAS (pFAS)

— Alcohol-Related Neuro-developmental Disorder (ARND)

— Alcohol-Related Birth Defects (ARBD).

The Public Health Agency of Canada further states that: “While preventable, FASD is a complex, multi-faceted, public health and social issue that affects Canadians in all walks of life, in all regions of the country.”

 

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