When eight-year-old Emma English discovered her younger brother would have to wait up to three years for an autism assessment, she took it upon herself to raise funds for a faster, private diagnosis.
A Sunday lemonade stand held in front of the family’s Kamloops home earned a total of $1,500, surpassing Emma’s initial goal of $200.
“A lot of people gave me a lot of money,” said Emma.
Despite describing her brother as “a little annoying,” Emma said she wanted to step up and help him because she cares about him.
Emma’s mother, Cara English, said her four-year-old son Bodhi needs a timely diagnosis in order to attend kindergarten next year— a diagnosis experts say is critical in order to access funding and support, but which increasingly requires multi-year waits to access.
“Helping him now will help him for life,” said Cara. “If he can’t do it until he is six or seven years old, he’s lost all those years that he could have learned so many coping skills.”
Bodhi is a fun, loving child, says Cara, but his emotional outbursts make him hard to manage.
She says several professionals, including Bodhi’s speech therapist and occupational therapist, have recommended having him assessed for autism.
But she was told by their family doctor that an assessment through public health care would take two to three years, and a faster private assessment would cost close to $4,000.
Cara said Emma overheard her talking about the problem one day.
“She said she wanted to help,” said Cara. “She has a heart of gold.”
Cara said she was shocked when she woke up on Sunday to discover a Facebook post she had made about the lemonade stand being shared widely.
She had provided her email address in response to one person who requested it to send a donation, and woke up to at least seven e-transfers.
She said several people with similar stories have stopped by the lemonade stand to share advice and provide donations.
“They’ve made my heart so happy because they care so much about helping a boy that they don’t even know,” said Cara.
“They’ve given me so much hope.”
Early intervention critical: expert
Grace Iarocci, director of Simon Fraser University’s Autism and Developmental Disabilities Lab, says getting an early diagnosis is critical for children with autism.
Children who are diagnosed with autism get accommodations and support that are crucial to their learning and development, according to Iarocci.
“Every year that goes by [without a diagnosis], they’re losing out on learning opportunities,” she said.
Children without a diagnosis are also losing out on funding, according to Iarocci. The province provides up to $22,000 a year in intervention funding for those with autism under the age of six.
But for children over the age of six, that funding drops to a maximum of $6,000 per year.
“If they don’t have the right approach and the right learning environment, they’re going to be further delayed, potentially,” she said.
Iarocci says that, about five years ago, families would have to wait one year for an autism assessment through the public health-care system.
But more recently she has heard from families across the province having to wait two to three years, like in Bodhi’s case.
“Every year it seems to expand, that wait time.”
The Provincial Health Services Authority, which runs the B.C. Children’s Hospital in Vancouver, said referrals for autism assessment are growing and continue to exceed current capacity, making it challenging to meet demand.
“B.C. Children’s Hospital leadership is saddened to hear about the experience of this family on their autism assessment journey,” a spokesperson wrote in a statement. “We apologize to all families who are waiting for care.”
The PHSA spokesperson said that going forward, it would look at solutions for families waiting for care, including by expanding the number of trained specialists to complete autism assessments.
Cara says while she still has more to save, the English family is well on their way to getting Bodhi a private autism assessment. She said she is excited for him to learn coping mechanisms and social skills.
“He’s gonna get to have friends finally, because he doesn’t right now,” said Cara.
“I can’t even tell you how emotional I am. I’ve cried so much.”