The Canadian Press
Date: Tuesday May. 4, 2010 8:04 AM ET
HALIFAX — The Nova Scotia government should set up a network of regional centres to provide a wide range of care for people living with autism, a team of advisers recommends in a report released Monday.
The eight-member team, which included government officials and autism advocates, submitted 53 recommendations aimed at helping the province deal with the increasing number of people diagnosed with the complex neurological disorder.
Figures from the Atlanta-based Centers for Disease Control and Prevention suggest the prevalence of autism is on the rise. The centre says rates have soared from one in 2,500 during the 1960s to one in 110 in 2009.
Between January 2009 and November of that same year, the number of school-age children and young adults in Nova Scotia diagnosed with autism rose 22 per cent to 1,350, according to statistics from regional school boards.
Autism is now recognized as one of the most common developmental disorders affecting children. It is now more common than Down syndrome, muscular dystrophy, cystic fibrosis, cerebral palsy and diabetes combined.
Despite its growing prevalence, a survey of 732 parents, professionals and people with autism suggests Nova Scotia has to provide more help.
The team found that once a diagnosis is given, families often do not receive resources to help them understand the nature of autism, leaving them to seek answers from the Internet or their local school.
"This process is overwhelming for families, who are often still in the grieving process after diagnosis," the report says.
As well, many families reported:
-inadequate services in the areas of psychology, speech-language therapy and occupational therapy.
-limited access to psychologists, unless there is an emergency.
-virtually no support for adult children with autism.
-lengthy wait times for children seeking assessment.
-difficulty finding health professionals who understand patients with autism.
"Families report significant stress in living with and supporting persons with (autism)," the report says. "Although the challenges may change with age, they do not disappear."
The report quoted a parent of an eight-year-old whose story is all too familiar to those with autistic children.
"He is very smart, lovable and affectionate, but his lack of communication skills leaves him frustrated and volatile," the parent said.
"With no means to say what is on his mind, he often resorts to the only thing he can do: tantrums borne of pure frustration. Imagine living in a world where, no matter how hard you tried, you couldn't make a single person understand your needs."
The survey found that respondents with preschool children with autism said they need more parent training and easier access to early intensive behaviour therapy.
Parents with school-age children with autism said they needed more social and friendship programs and activity programs, such as physical education, art and music.
Adults with autism said they needed access to more employment programs, friendship and recreation programs and post-secondary programs.
To address these challenges, the report stressed that the creation of regional centres is a priority.
"The unique and complex nature of the autism disorder is best served by a 'total care centre' approach," the report says.
The centres would provide access to counselling, speech and occupational therapists, behaviour therapists and psychologists, the report says.
As well, each centre should have a lending library dedicated to autism and an "autism navigator" who would guide families through the process of finding the right help.
There was no indication of how much it would cost to set up such a network, but the report says it could be done using existing facilities and services.
Education Minister Marilyn More said the NDP government is expected to respond to the report in the fall.
"We are committed to helping families in all regions of the province," she said in a statement.
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