Parents in the West Kootenay are going to get some help while they wait for their children to receive an assessment for autism.
A “Waiting for Assessment” workshop is being held at Kootenay Family Place in Castlegar on Feb. 1, from 1 to 4 p.m.
The workshop came about as wait times for public assessments of children has increased from 30 weeks to over a year.
“The wait time is difficult, and they are not only waiting for the [provincial public] assessment,” says Dina Zanet Costa, the program manager of supported child development programs and Kootenay Family Place. “But after that, they are waiting to use their autism dollars to access other services, but they have big wait lists too.”
The three-hour workshop covers essential information that families need to know at the start of their autism journey, including:
• How to prepare for an autism assessment and what your family can do while you wait;
• Pros and cons of private versus public assessments and diagnoses;
• What to expect at the assessment and after a diagnosis;
• Tips on coping strategies, how to talk to your family and friends about autism, etc.
For many families, this workshop is the first touchpoint to the autism community. It is a place to meet others facing similar challenges.
“I think for families, it’s stressful waiting to have the diagnosis, and once they do, and they wrap their brain around that, then next they want what they can for their child, as quickly as possible,” says Zanet Costa. “And then they are met with that roadblock.”
Parents can wait up to another year after diagnosis for behavioural therapists and other professionals trained to help children with autism.
Zanet Costa says there can be opportunities in the interim for children to receive behavioural or occupational or speech therapy in the community before they get the assessment. But they can’t access those services if they don’t know about them.
Kootenay Family Place has been working to bring private professionals in from other areas, like the Okanagan, and work with families, who share the cost.
The wait time can have other consequences for families hoping for service.
“A lot of times the children then age-out to school age,” she says. “And once they hit the school system, we know that their resource level is low.”
She says it’s now getting so bad that children can go through the entire elementary school system and receive little extra support — if they get any at all.
“It’s becoming more common, we are finding a lot of children going into the school system and not getting diagnosed until they are young teenagers — Grade 7 and 8,” she says.
Bringing families together
The workshop has been well attended since it was created last year, with more than 120 families attending, says an official with AutismBC.
“Our idea was to build an inclusive community, bring together people waiting in limbo and tell them what their different options are,” says Brock Sheppard, program manager. “Because with autism there’s a lot of different information out there.”
He says the baseline information can help families tailor their child’s treatment specifically for them.
“Every person diagnosed with autism is very different,” he says. “And every family is very different. But what we want families to know is they are not alone, and there are different things you can do while you’re waiting for a diagnosis.”
Interested parents can register through the Autism BC website. You don’t have to be a member of the organization to attend.