Australia recently took a big step to address fetal alcohol spectrum disorder (FASD). First it launched this year’s inaugural national clinical guidelines on diagnosis! Partnering with the above four organizations, this initiative seeks to increase the rate of diagnosis. The majority of people with FASD are either undiagnosed or misdiagnosed and thus do not receive vital support. These recommendations are a big deal and they come at an opportune time. Awareness of FASD and its enormous toll on individuals and families is growing exponentially.
FASD is caused by the exposure to alcohol in utero, leading to lifelong developmental difficulties for those born with it. It is estimated that as many as five percent of children in Western countries may have Fetal Alcohol Spectrum Disorder (FASD). Precise data on its prevalence in Australia is still difficult to come by. Individuals with FASD are especially over-represented in our nation’s criminal justice system. This farther flung reality puts new emphasis on the critical importance of early diagnosis and effective intervention.
Importance of the New Guidelines
The newly approved guidelines offer a more inclusive approach to diagnosing FASD. Dr Vanessa Spiller, a paediatrician and Public Health Association of Australia (PHAA) board member, welcomed the news with open arms, recalling her son Dylan’s diagnosis 23 years ago. Dr. Spiller highlights that “diagnosis opens up all sorts of opportunities, mostly for the right interventions.”
We wrote these guidelines through a year of deep and meaningful collaboration. We interviewed more than 120 medical practitioners, researchers, cultural specialists and families living with FASD. The work involved a detailed analysis of more than 300 academic articles. As a result, this review has been tagged by Overdrive as a “world-first” in its field!
Natasha Reid, artist and creative director, has been an integral part of the project. She wants clinicians to get involved early on in the assessment process. She stated, “We want to encourage clinicians, wherever they’re working … to really contribute to the assessment process.” The new guidelines provide amazing flexibility. Now, practitioners of diverse backgrounds can work together on multiple aspects of the assessment, making for a more complete diagnostic process.
Addressing Current Challenges
Although these guidelines have been made available, implementation challenges continue. Dr. Spiller emphasizes that once children and young people receive a diagnosis, “there’s really nowhere for these kids and young people to go.” Australia has “one-stop shop” FASD clinics, but the majority of these are located in metropolitan regions. Unfortunately, they have many times lengthy waitlists for their services.
The guidelines are meant to do more than just make diagnoses easier. They’re meant to make sure that there are good interventions available after diagnosis. Dr. Spiller cautions that health practitioners require adequate training. Without it, access to the myriad of benefits these guidelines can provide will go long unrealized. “We know that about 98 percent of people with FASD are undiagnosed or misdiagnosed,” she noted, pointing out the pressing need for improvements in healthcare provider education.
Future Directions
The release of national clinical guidelines is a watershed moment in the awareness and management of FASD in Australia. The enormous collaborative effort that produced these guidelines speaks to the recognition of the urgency around this issue. As Natasha Reid mentioned, “That might mean [practitioners] can do one part of the assessment and then they collaborate with a practitioner in another service that can do another part of the assessment.”
