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A Kamloops mother continues to get the runaround after years of trying to get her young son assessed for autism before he enters kindergarten, and she isn’t the only one. 

Cara English first spoke to iNFOnews.ca in April when she and her daughter organized a lemonade stand to raise the funds necessary for a private assessment for her four-year-old.

Months later, she still doesn’t have the assessment.

“My son has gone for years needing help and missing out on early interventions, at some point it’s too late to do enough to give them the skills they need to cope in life and school.”

Autism Spectrum Disorder, often referred to as autism, is a neurobiological disorder that prevents people from understanding what they see, hear or sense.

A diagnosis opens up funding to go towards the programs and people who can support the child. It allows parents, educators and caregivers to build a supportive team to help the child, but that's if you get a proper assessment. It can take months or even years to get one either publicly or privately.

That’s not good enough, English said.

“My heart is broken for my child, I want to give him the best opportunities,” she said. “If he doesn’t get the diagnosis before going to school, he’ll get lost in the system.”

English’s challenges started when her son — then age 1 —wasn’t reaching his speech milestones.

“He didn’t babble like a typical baby,” English said. “I talked to my doctor, a very good doctor, now retired, who said he’s probably just a bit behind, sometimes boys are, but by the time he was two, he still had no words.”

English got her son into speech therapy at a family resource centre in Kamloops where she and her son learned techniques to help him speak, and while there was some improvement, he was unable to form a sentence at the age of three.

Speech therapists informed English her son has signs of autism and suggested he get an assessment.

“I kicked myself, I’d been suspecting autism for a long time but was too timid to pursue it,” she said. “My son wasn’t progressing and had emotional outbursts and didn’t know how to regulate them.”

After going to her doctor, English was referred to a pediatrician and put on a months-long waiting list. Pediatricians determine whether a child needs an assessment and can make a referral for one. 

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The young mother self-referred to a few private clinics for an assessment and was added to relatively shorter waiting lists, but at a cost.

“It’s so expensive for a private assessment, there are different types of assessments based on age that cost between $2,300 to $4,000, people can’t always afford this option.”

She went to a private clinic in the Okanagan and paid a non-refundable fee to get her son on a waitlist.

“They can’t provide any funding support if a pediatrician hasn’t seen him first and signed off that it’s necessary. He’s on a four-month waiting list for the assessment with them, but the waiting list for the pediatrician is still eight months long.

“These kids need help, being left behind because our healthcare system can’t get it together.”

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A paediatrician, psychiatrist or registered psychologist does the assessments, and the process takes more than one appointment.

British Columbia Autism Assessment Network provides free diagnostic assessments for children up to age 19. 

Parents choosing private clinics still need a referral from a pediatrician and they must bear the cost of the assessment, plus travel and food costs.

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English said she initially called the only private clinic she could find in Kamloops that does autism assessments but never heard back. The parents of autistic children she knows travel to private clinics in Kelowna or Vancouver.

Kamloops father Justin Bourke also chose a private clinic in the Okanagan to get his little girl’s assessment.

“We were told going through the Interior Health Authority it could take between six months to three years to get an assessment,” he said.

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Bourke was able to obtain funding through Variety Children’s Network and after getting approval for the assessment was able to get one done privately in one month. 

“Our assessor encouraged us to move to the Okanagan as resources for autism are more plentiful and better funded,” he said. “They actually said Kamloops is bad for resources, wait lists are long and appointments wouldn't be as plentiful.”

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According to the Provincial Health Services Authority website, it’s common for families to have to wait for a diagnostic assessment and the overall wait time in BC is approximately 80.6 weeks.

“I hate so much I can’t change the world," English said. "I don’t know what it’ll take to change this, it affects everyone but it’s the worst when it affects kids.”

INFOnews.ca contacted the Public Health Services Authority on Aug. 14 requesting an explanation on what factors are behind long wait times for public autism assessments, and was referred to the Interior Health Authority’s media team, who later the same day referred iNFOnews.ca back to the PHSA.

On Aug. 16, the public health services authority sent an emailed statement from BC Children’s Hospital where the public autism assessments are done.

“We know that waiting to find out if a child has autism spectrum disorder is a stressful time for a family advocating for the best care for their child. Unfortunately, the number of referrals into the BC Autism Assessment Network (BCAAN) each year continues to exceed the number of available assessments,” the email read.

While we strive to provide timely assessments for autism spectrum disorder to ensure children diagnosed with the condition receive early intervention and specialized care, we fully acknowledge that we are unable to meet current (and increasing) demand.

We apologize to all families who are waiting. We want all children to receive the best and most appropriate care, as quickly as possible.

A the statement said the BC Autism Assessment network is taking steps to increase capacity for the assessments and find ways to mitigate increased wait times, which include increasing outreach clinics in the Northern Health Authority region.

— This article was changed at 10:05 a.m. on Monday, Aug. 19, 2024 to add a statement from the Public Health Authority Services. 

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