Posted by Josh Chiat, Kalgoorlie Miner
Raised in Anchorage, Alaska, by her grandparents, alarm bells rang for nine-month-old Tami Eller’s carers when it became clear her head was not growing.  Her mother had a history of substance abuse, and she was later diagnosed with foetal alcohol spectrum disorder.  While her body did begin to grow, the disorder manifested itself in different ways. 
 
 
Ms Eller has a telltale deformity common to people who were exposed to alcohol in the womb — a short pinky finger and underdeveloped hand muscles that make writing a chore.   She only wears terrycloth socks because the tactile sensation from the seams of normal socks hurt when she was a toddler, and she distinctly remembers her joy when, later than most children, she first managed to colour inside the lines and enjoy reading a book.  Spelling and grammar rules still confound Tami, yet she has a Masters degree and is a poster child for what children with FASD — a mostly misunderstood disorder blamed for secondary impacts such as learning disabilities, anxiety, depression and illegal behaviour — can do with the right support.
 
Now a counselling psychologist working with foster children and parents at not-for-profit Alaska Child and Family, Ms Ellers is part of a team of Alaskan experts taking part in an international effort to tackle the effects of FASD on the other side of the world in Leonora, 230km north of Kalgoorlie-Boulder.  She credits her own success to a number of what she calls accommodations — interventions made by guardians, therapists and teachers to help her navigate the world safely — and now works with affected children through Alaska’s foster care system.  “In that organisation, the role I play is we have about 50 therapeutic foster homes and about 56 kids in our service in the therapeutic foster homes,” she said.   “Of those kids, about 50 per cent of them experience FASD.
 
“I help those foster parents understand what’s going on with that youth, because it could be the FASDs, it could be the trauma, it could honestly be a mental health disorder and some neurochemical issues you would attribute probably to the prenatal exposure.  “We talk about what’s going to work for this youth within this environment and also we talk about how do you advocate for this youth, how do you help this youth understand what they need.  “Honestly, I think the biggest thing my grandparents gave me was a voice to say ‘that’s not working for me and this is what I need you to do’.”
 
Research into the impact of FASD in WA, and particularly in regional WA, is stark.  A landmark study in the Fitzroy Valley in the Kimberley found as many as one in five were affected by FASD.  A second major report into incarcerated youth at the Banksia Hill detention facility in Perth, published last year, found as many as 36 per cent of offenders had the disorder.  Over the next two years the Leonora Make FASD History program, funded by a $525,000 commitment from five Rotary clubs around WA, will seek to identify FASD within the remote Goldfields community through diagnostic clinics and provide strategies to manage and support people who need help.  
 
That is where experts like Monica Charles come in.  She is a Yup’ik Eskimo woman from Bethel, Alaska, where winter temperatures average as low as -17.5C and the midnight sun brings 80 days of uninterrupted daylight in summer.
Climate aside, there are similarities between the community where she lives and the desert town she visited last week.  Both have issues with alcohol, though Ms Charles is quick to point out FASD is not simply a “native problem”, a stigma around the disorder that has stalled prevention efforts in the past. “If that were the case I wouldn’t be able to stand here and formulate this sentence with you and I wouldn’t have travelled halfway around the world to try and get my hopes (up) to help lower the prevalence of FASDs in Australia and worldwide,” she said.  “FASDs can occur anywhere alcohol is consumed. It can happen in Perth, it can happen in the bush, it can happen in the best parts of Perth, it can happen in Bethel, where I’m from, or one of the native villages in Utqiagvik, it can happen anywhere alcohol is consumed.”
 
A special educator, Ms Charles said her focus was on giving teachers the tools needed to support children with learning difficulties to improve their chances in life.  “If they have one stable person in their life in the school setting, be it the janitor, their teacher, a stable friend, the secretary or be it the teacher’s aide, they can have a higher chance for success in the school setting,” she said.  “A child being prenatally exposed to alcohol doesn’t mean they’re bad in math, reading or writing, it depends on every individual, they’re affected differently each way.  “It also doesn’t mean that they can’t succeed, it just means they need support in the school setting.”
 
Leonora District High School has provided space for leading WA medical firm Patches Paediatrics to run clinics.  Principal Janette Maxfield said learning strategies to assist students with hurdles would be invaluable for educators.
“For me it’s more about knowing strategies for children that present with certain difficulties,” she said.  “I think it’s a really big step forward and just from the week we’ve just had and the knowledge we’ve gained I’m very excited … we’re broadening our understanding and obviously that has to benefit the children.”
 
Marilyn Pierce-Bulger, a nurse midwife and nurse practitioner who owns a clinic in Anchorage that diagnoses FASD, said one of the biggest challenges facing advocates is crafting effective messages to prevent its causes.   “We have seen a concerted effort on the part of the alcohol industry to market alcohol use directly to women, and women have responded,” she said.  “We’re now seeing women drinking more like men, and women drinking in binge patterns.”
“If they happen to be pregnant and don’t realise that, their exposure can cause brain damage.”  While Leonora is a community with a large Aboriginal population, Mrs Pierce-Bulger said messages needed to be widespread.
“We’re really struggling with how do we reach these women with a prevention message that makes sense to them,” she said.
 
This article was written by Josh Chiat and published in the Kalgoorlie Miner on Sunday, 21 April 2019.