Families wait in limbo for autism assessments

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      Had Anka Cornea waited patiently for Canada’s public system to assess whether or not her five-year-old daughter had autism, she’d still be waiting. More than two months ago, a doctor at Oakridge Medical Centre referred Kasandra for an assessment. Though the child is bubbly, her words come out as gibberish. Kasandra can’t sit still through a book reading; the sentences don’t make sense to her.

      The Fraser Health Assessment Network advised Cornea at the time it could take eight months to see just the first specialist of the multidisciplinary assessment team, she recalled. So she did what so many other Canadians desperate for faster health services do: she took Kasandra to a private clinic.

      “Oh, God. Eight months just to get in,” Cornea told the Georgia Straight in a phone interview. “I can’t be patient. I was already losing my daughter. She’s already going deeper and deeper. If I don’t help her now, it’s already late.”¦She gets so frustrated, she throws tantrums, but they’re not tantrums. I say, I don’t understand you, Kasandra. And she’s just crying. She doesn’t know how to express herself. You smile at her, and she doesn’t smile back.”

      The decision cost her: $185 for the first session with the speech and language therapist; $110 an hour for speech therapy; $300 per session for a psychologist. In the long run, though, going private and getting a diagnosis may have saved her money. The B.C. Ministry of Health funds diagnosed-autistic children up to their sixth birthday with $20,000 per year for treatment, and only $6,000 per year after that, to age 18. (The B.C. Liberals went all the way to the Supreme Court of Canada to obtain a 2004 ruling that enabled the province to deny medicare-funded early autism therapy.)

      “I just jumped and did whatever I had to do,” Cornea said.

      This spring marks five years since the Ministry of Health’s B.C. Autism Assessment Network set targets for assessment waits in B.C. at three to six months. At first, the targets were achievable, BCAAN codirector Dr. Vikram Dua explained in a phone interview. But $3.4 million per year in funding limits the network to about 1,100 assessments per year. In 2006, 1,400 children were referred to the network. Last year, BCAAN got 1,800 referrals, creating a backlog.

      “You can’t just look at the kid or do a blood test [to assess whether he or she has autism spectrum disorder],” Dua said, noting that about half the kids he sees are eventually diagnosed with ASD. He estimates that about 6,000 children in B.C. have the disorder, at about one in 155 or 160.

      The cure for the backlog, Dua said, is two-fold. First, greater ability among the province’s professionals to diagnose autism—something he’s working hard at building—and more government funding. The average wait time for children under six years old, he said, is usually less than six months, because the network strives to serve the youngest first. Older children can wait much longer.

      But Dua also pointed out that some parents who think their children may be autistic become gravely concerned with wait times. If, indeed, a child has ASD, he said, there’s no cure.

      “We put so much pressure on parents that they believe there’s this window, that we have to get them before this age.”¦Yes, a younger brain is more malleable than an older one, but there’s no dividing line [between when children can be helped and when they cannot.]”

      No one from the Ministry of Health returned the Straight’s calls by deadline. On the Provincial Health Services Authority Web site, private queue-jumping for autism assessment appears matter-of-fact: “Private assessments are also accepted by the Ministry of Children and Family Development. The private assessment form is available below under “Forms and Documents”. It also suggests that families simply call the College of Physicians and Surgeons of B.C. or the British Columbia Psychological Association for a list of professionals who do private assessments.

      This isn’t acceptable, according to Clair Schuman, the executive director of B.C.’s Autism Community Training, a nonprofit agency that contracts with the government to provide information and education to the autism community. Schuman simply wants public assessment times back on track, to the three- to six-month guideline agreed upon during the 2003 process.

      “We can dramatically impact the way children and adults with autism function,” she told the Straight on the phone. “The reality is, it’s expensive.”¦We know that brains don’t suddenly turn into concrete and that children can’t progress past age six, but we know our best bang for our buck, according to research, is under six.”

      Waiting an extra month, she said, is not going to change a child’s trajectory, but an extra year, or year and a half, could.

      In the midst of this, both Schuman and Dua agree that B.C. has one of the best autism-assessment practices in North America. Dua said this province is the only jurisdiction to coordinate it centrally, and it’s a lot better than it was before 2003.

      But Schuman also knows personally how difficult it is to wait for an assessment. As a social worker trained in child development, she knew something was different about her son when he was just 20 months old. But it wasn’t until after he was in kindergarten—and after they visited many doctors—that he was formally diagnosed.

      “It’s a terrible feeling to go to the mall and your child is starting to express unusual behaviour and other people are starting to talk to you about your parenting,” she said. “You question yourself, your extended family often questions you. It’s misery. To put families through that”¦it’s cruel.”

      Now that Kasandra finally has her diagnosis, Cornea registered her for kindergarten for this September. The school’s case manager has assured her supports will be in place so she’ll be included and challenged and, hopefully, will learn how to speak to communicate.

      “I’m not out of the woods; I’m just starting,” Cornea said. “When they’re not diagnosed, you hear it from everyone, and you can read it on the Internet; someone at the cafeteria is telling you she’s autistic, but you don’t have anything official. What do you do?”

      Comments

      1 Comments

      mjlawson

      Nov 20, 2010 at 9:12am

      2 months to wait would be a Godsend!!! I waited 2.5 years for my son's first assessment, which was a joke and he was misdiagnosed, and now I have been waiting another 8 months so far for the next assessment.