Photo by Whitehorse Star
Pictured Above: STERLING CLARREN
Photo by Whitehorse Star
Pictured Above: STERLING CLARREN
The first, and most crucial, step to effectively preventing and addressing fetal alcohol spectrum disorders is diagnosing sufferers,
The first, and most crucial, step to effectively preventing and addressing fetal alcohol spectrum disorders is diagnosing sufferers, says one of Canada's leading FASD researchers.
Dr. Sterling Clarren delivered his message to participants at the Walking Together symposium being held today and tomorrow at the High Country Inn Convention Centre.
"Every system is perfectly organized to deliver the results that are achieved,” Clarren said, quoting American doctor and public health care advocate Don Berwick.
"So,” he continued, "it is not an accident when the results are not those that were hoped for.”
The current system, Clarren said, is not effective in assisting people with FASD, nor preventing new babies being born with a fetal alcohol disorder, because there is a major lag in identifying how many Canadians suffer from the brain damage done when a pregnant mother drinks excessively.
As Clarren pointed out in his keynote speech this morning, not every mother who consumes alcohol has a baby with an FASD, and not all FASD sufferers are easily identifiable by the "elfin” facial features commonly associated with the disorders.
An FASD diagnosis takes a whole gamut of factors into account, beginning with prenatal alcohol exposure, and moving through a list of "functional problems”, including learning disabilities, attention and memory deficits, low IQ and poor motor skills.
Many times, FASD sufferers are not recognized as such because the people dealing with them – teachers, caregivers, police – only see individual problems and don't add them up to equal an FASD, Clarren said.
Of the very estimated 330,000 people in Canada who have an FASD (the number could be twice or three times as high, Clarren said), only 20,000 have been diagnosed.
In the Yukon, The "questimate” is higher in the North: of the estimated 1,000 Yukoners with an FASD, only 100 have been diagnosed. And while the estimate of babies born with an FASD in Canada is one in 100, it could be five times that here, translating to about 20 births a year.
What would it take to diagnose every sufferers in the territory?
"A very modest health care investment” of about $6,000 per person, Clarren said.
To put that spending into perspective, the doctor pointed out that the treatment for a woman with breast cancer runs at $60,000, and no one would ever suggest the government can't afford that expense.
The Yukon is in a unique position to identify the scope of the disorder within its borders, he said.
"Finding every (new) case of FASD in Toronto? That's impossible. Finding 20 people (a year) in the Yukon? We can do that.”
The fact is, Clarren said, the government can't afford not to fully diagnose the problem, because otherwise money, services, and energy will continue to be expended without tangible results.
To put it bluntly: "No problem – No solution,” Clarren said.
He pointed out a number of solutions that are being proposed or developed, including a recent resolution by the Canadian Bar Association to find alternatives to the traditional criminal justice system for people with FASD. But these valiant efforts "will be garbage” without hard numbers and identified fetal alcohol victims.
The fact is, he said, research and resolutions don't help actual people without the government will to back them up.
Making a play on the Four Horsemen of the Apocalypse, Clarren blamed the Four
Horsemen of the Bureaucracy for government's inaction on FASD.
"Pestilence: ‘That is beyond out scope.'
"Famine: ‘That is beyond our budget.'
"War: ‘That requires special permission.'
"And Death: ‘Why should we listen to you?'”
Preventing more people from being born with an FASD, and properly serving those Canadians who are suffering today, will take strong advocacy and leadership from outside government, met with agreements on roles and responsibilities from within government, Clarren said.
He is joined by more than a dozen speakers at this week's conference, including parents, advocates, counsellors and elected representatives.
At 7:00 this evening, Brenda Bennett, the founding director of a Winnipeg non-profit agency which advocates for and assists clients with FASDs, will be giving a public talk on the issues surrounding her work at the High Country Inn.
In order to encourage thoughtful and responsible discussion, website comments will not be visible until a moderator approves them. Please add comments judiciously and refrain from maligning any individual or institution. Read about our user comment and privacy policies.
Your name and email address are required before your comment is posted. Otherwise, your comment will not be posted.
Comments (4)
Up 0 Down 0
Tracy Grant on Sep 29, 2010 at 6:54 am
Dr Clarren is an amazing researcher and advocate for FASD prevention and services. We must move to greater understanding of this disorder
Up 0 Down 0
June zacharias on Sep 29, 2010 at 5:53 am
I have a 17 yr old boy who has fasd. I tried to get help for him when he was 3 yrs old, it was almost impossible. It seemed I had to go though the back door all the way. He is now in the criminal justice system. He is a good boy who deserves to be happy.
I'm glad that fasd is coming more to the forefront, I just wish it would more swiftly
Thank you
June
Up 0 Down 0
Susan Lees on Sep 29, 2010 at 5:40 am
I couldn't agree more with Dr. Clarren. Any intervention in the cycle (prevention, diagnosis, treatment or interventions for secondary complications) is a positive step but without diagnosis we will never know the extent of the problem in Canada, thwarting both prevention and intervention.
I have heard many arguments for NOT creating diagnostic services over the years but the one that really gets in the way is the belief that if we diagnose FASD, we will have to provide the appropriate services. In fact, just the knowledge that a child has FASD is a huge service which informs caregivers who can then adapt parenting and education to meet the learning abilities of the child. They will then advocate appropriately, more people will become aware of the issue, the child will have a better chance of avoiding secondary disabilities and prevention and intervention will start falling into place. It is unconscionable that so many children and adults continue to suffer the lifelong, profound effects of mostly invisible disabilities that are completely preventable!! So please listen to Dr. Clarren, start by advocating for diagnostic services!!
Up 0 Down 0
Thomas Brewer on Sep 28, 2010 at 7:43 am
If I recall correctly, wasn't it the First Nations that didn't want to have FASD testing implemented?