The statistics are bleak.
According to the Centers for Disease Control and Prevention, one out of 110 children is now diagnosed with autism. Four out of five of those are boys. Studies estimate that the lifetime cost to care for an individual with an autism spectrum disorder is $3.2 million.
Quinanna Robins, director of Imagine Behavioral and Developmental Services, said, “Insurance companies will not cover the services these children need.” Though almost half of states have mandated insurance services for autism, Robins said, “Washington is not one of them. We are an organization that is trying to change this.”
Imagine offers programs for children with autism spectrum disorder and other developmental disabilities. Robins said, “We’re taking a creative approach in working with families to find coverage for services for their children.”
While the economic impact for these families is high, the emotional and physical cost can be equally great.
Just ask John and Christina Salstrom. Their 9-year-old son, Quinton, was diagnosed with autism in April 2006.
Born six weeks early, Quinton seemed perfectly healthy until age 22 months. “He would say Ma, Da, – then he started losing his words,” said John Salstrom. “All of the sudden he stopped answering us when we talked to him.”
Christina Salstrom said, “He wouldn’t make eye contact, and he stopped cuddling up to me.”
Their older son, Cole, had received speech therapy, so Christina thought that might help Quinton. When she asked for a referral from their pediatrician, he said, “I’ll get that to you right away, because Quinton is on the autism spectrum.”
Christina shook her head at the memory. “That was the first we’d heard of it,” she said.
And so began the family’s journey to find help for Quinton. From their home in north Spokane, the couple talked about their struggle to navigate the bewildering world of treatment, therapies, private insurance and state assistance.
Nearby, their two sons played a beanbag toss game. “Say please,” said 10-year-old Cole, as Quinton grunted and reached for a beanbag. “Good try, buddy.”
Quinton isn’t toilet trained and is nonverbal. His disability has taken a toll on Cole, too.
John said, “For a couple Christmases, Cole said the only thing he wanted was for his brother to talk to him. If that doesn’t rip your heart out, I don’t know what will.”
Christina explained that while Quinton needed physical, occupational and speech therapy, his behavioral challenges interfered with his ability to benefit from those services. By the time he started preschool, those aggressive behaviors had intensified. “He would bite and scratch me and go after his teacher,” she said. “I can’t always meet his needs, and that’s very frustrating for him.”
Finding the necessary services and the wherewithal to pay for them was equally frustrating. While John’s insurance covered some of the services, Quinton quickly maxed out the coverage allotted because his needs were so great. Christina said, “The doctor gave us a card with the number for SSI (Supplemental Security Income) on it and said, ‘Call them.’ ”
Their struggle to find help for Quinton is a common one in Washington. Robins said, “The behavioral health world will only treat mental health issues, and autism is not recognized as a mental health disorder. You’ll often hear, ‘I’m sorry, we can’t help you.’ ”
Meanwhile, the family coped as best they could. John said, “Quinton had severe sleep issues. He would go to bed at 10 or 10:30 and then wake up at 1:30 and that was it for the night.”
As his father spoke, Quinton spun around the room in a ceaseless whirl of movement. He now sleeps in the family room. “He destroyed his bedroom,” said John. “He punched and kicked holes in the plaster.”
The couple battled exhaustion. Christina said, “I have the best husband in the world – we took shifts.”
When Quinton was 8, Christina went to see their pediatrician. “I told him I was at the end of my rope. The doctor offered medication for him, but we weren’t comfortable with that.”
John explained, “The antipsychotic medications had a list of side effects longer than your arm.”
Instead, the couple explored homeopathic remedies and consulted a naturopath. Eliminating gluten, soy and caseins from Quinton’s diet proved helpful. They also found the first of several behaviorists who worked to address his behavior that harmed himself and others.
Ultimately, they connected with Imagine Behavioral and Developmental Services, and the Salstroms say that has made all the difference. “The behavior services are what’s saving Quinton – and our family,” Christina said.
Said Robins: “Our approach is community-based. We go to our clients in their own environments like home or school, instead of having them come to us.”
She helped the Salstroms access the funds and the services Quinton needed. Robins said they direct clients in a variety of ways. “If the family is eligible for services through the Division of Developmental Disabilities we work with their case manager to access funding. If a family is not connected with DDD we evaluate other options. We may steer them towards the Isaac Foundation to apply for a grant to cover services. We may look into their private insurance.”
The Isaac Foundation is a nonprofit agency whose mission is to provide economic assistance for intervention services and therapies to children diagnosed with autism spectrum disorders. In March, the Salstroms learned they’d received a grant from the foundation. Now, the family receives respite and personal-care hours. A care provider comes to the home four days a week, offering John and Christina much-needed rest and a chance to reconnect as a couple.
Quinton recently began communicating via iPad. His fine motor skills are underdeveloped, but with practice he’s able to point to a picture on the iPad to tell his family what he wants.
“He’s calmer now. He has more tolerance,” Christina said.
The combination of diet, homeopathic remedies and behavioral therapy has had a wondrous affect on their son. He sleeps until 6:30. He then gets up, dresses himself, feeds the dog and attends school at Prairie View Elementary. “We’re working on getting him to sit at the table,” Christina said. “It’s really important to have kids involved in the real world because autism sucks them away.”
For her, one of the most enjoyable developments is that Quinton is starting to enjoy books and bedtime stories. “He’ll get a book and look at the pictures. As a mom, that’s pretty cool – I’ve waited a long time.”
The Salstrom family’s quest to obtain help for their son has been difficult, but John said, “It’s worth it – it’s your kid.”
As Quinton orbited around them, Christina credits his progress to the behavioral services he’s receiving. She said, “He’s a happier child now, and I’m happier too.”