Approximately 1 per cent of Hamilton’s population lives with autism, a disorder that impedes a person’s ability to communicate and make friends. With no cure, families turn to a variety of therapies. In part 3 of Navigating Through the Fog, a four-part series that aims to piece together the puzzle of autism, families experience success with different treatment modalities.
By Catherine O’Hara and Julie Slack
METROLAND WEST MEDIA GROUP
Autism spectrum disorder is shrouded in mystery. Scientists have uncovered genetic links associated with the condition, which affects one in roughly 100 individuals living in the community; yet, no definite cause has been identified.
Despite the fog that envelops autism, interesting trends have emerged. These developments have allowed medical professionals to take different approaches when attempting to quell the disorder’s symptoms, which manifest themselves physiologically and developmentally.
For the parents, caregivers and those living with autism, headlines like “Baby communication gives clues to autism; High-tech tools created to study autism; Little evidence supports medical treatment options for adolescents with autism and Children with autism experience interrelated health issues” offer hope, advice and opinions. There are new studies and choices every day. Play-based and natural therapies, new apps or the latest tech-gadgets — the options are limitless.
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Dr. Sonya Doherty, a licensed and board certified naturopathic doctor who said she specializes in neuro-developmental disorders including autism, has zeroed in on her patients’ biochemistry and metabolic function to develop treatments.
“What I believe, and what research is now supporting, is that autism is indeed a biological issue,” said Doherty, who operates her practice at Burlington’s The Natural Care Clinic.
Her biomedical treatments, which are partly covered by some extended health benefits, have proven successful among high- and low-functioning youth on the spectrum, targeting underlying impairments in physiology.
“If you can identify it, you can help them improve their quality of life and their developmental functioning,” she said.
There are many schools of thought on autism therapies and Doherty readily concedes her approach is far from mainstream, but believes it to be effective nonetheless.
Just ask Ana Bejarano, a Milton mom of two boys, one with autism and another with pervasive developmental disorder (PDD), a condition that causes delays in development, socialization and communication. She turned to The Natural Care Clinic after numerous attempts to personally address her children’s behaviour and sensory issues as she and her husband did not have the financial means to fund intensive behavioural intervention (IBI), a series of therapies that can cost families tens of thousands of dollars annually.
Despite her efforts to implement a rigorous program in her home, she watched as her eldest son, Lucas, spiralled out of control. “He was getting worse by the minute,” she said.
Lucas, who was three and a half at the time, was staring into space, barely slept and engaged in very rigid types of play. At times, he became aggressive, throwing objects in Bejarano’s path.
“I felt like I was a prisoner of autism,” she said. “It’s like I’m drowning and I can’t reach my son.”
On an interminable wait list for access to publicly-funded behavioural therapy, Bejarano was desperate for help for Lucas and his younger brother, Adrian, who was starting to exhibit some early warning signs.
In addition to his erratic behaviour, Lucas was suffering from bloody stools and chronic gastro-intestinal issues — symptoms reflecting a relatively new finding that links the brain’s development and problems with the gut.
“Up to 85 per cent of children with autism have digestive problems, severe constipation, severe diarrhea, even mucus and blood,” said Doherty.
Medical professionals will sometimes dismiss the digestive problems experienced by children on the spectrum as part and parcel of the disorder. “I hear this a lot and it’s just devastating,” said the naturopathic doctor.
Doherty’s non-conventional approach to using the body’s physiology as a roadmap to treating symptoms of autism is gaining popularity among families. But the process of replenishing the body with nutrients and vitamins, as well as eliminating items from one’s diet, is no child’s play.
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For Bejarano’s boys, Doherty recommended a gluten- and dairy-free diet, a healthy dose of natural supplements and regular methyl B12 injections.
Altering Lucas’s diet “was the most difficult thing I have ever done,” said the Milton mom. The pre-schooler was a fussy eater, so much so that his diet consisted of only 11 items, including gallons of milk and spoonfuls of ketchup.
Bejarano struggled with the nutritional regimen until she started looking at food differently. “I started to give him food like medicine,” she said.
Within a couple of months, Bejarano and her husband, Antonio Herrera, saw changes in Lucas’s behaviour and overall health. “He was actually coming alive,” she said.
The progress was also noticeable in Adrian, who also followed the same treatment plan for his PDD.
In Burlington, Lizanne Rowe’s son, Jack, experienced great success with biomedical treatment after he was diagnosed with autism at three and a half years. The family’s first plan of action was to consult with Dr. Doherty.
“We saw immediate results,” said Rowe.
Jack, too, was introduced to a gluten- and dairy-free diet, was provided with supplements and continues to receive methyl B12 injections, or as he calls it “his bum shot.”
Within a month, Jack had an explosion of language and a few months after that, began establishing eye contact with others. His tummy aches and other gastro-intestinal troubles subsided and his behaviour improved dramatically.
The changes in diet and nutrition were a family affair for the Burlington clan. Now, seven-year-old Jack shies away from foods loaded with gluten. “If we say, ‘That has gluten,’ he genuinely doesn’t want it because he knows that’s going to hurt his tummy,” said Rowe.
Methyl B12 injections, used to reactivate the biochemical pathways used to power up the brain, have also become part of Jack’s routine. And if he doesn’t receive his dose on time, his behaviour starts to shift. The youngster will even ask to have a “poke.” He feels himself slipping away back into the fog.
According to Doherty, much of the methodology used to treat autism has a direct impact on a child’s quality of life.
“For me, it’s almost a human rights issue,” she said. “If kids can’t sleep, they are sick all the time, they have terrible diarrhea, they have terrible digestion, then how can we expect them to learn and assimilate information so they can gain as many skills as possible?”
When Bejarano considered taking an alternative approach to treat her sons, her physician cautioned her.
“My doctor said, don’t be doing any voodoo stuff. That voodoo stuff has saved my life,” she stated.
There are other alternatives to intensive behavioural intervention, the traditional approach to autism therapy. One of those choices is the Oakville Success Centre on Cornwall Road.
The first of its kind in Canada, the new business provides psycho-educational therapy for people with dyslexia, attention deficit disorder, learning disabilities, autism and Asperger’s syndrome.
Cathy Dodge Smith, the centre’s director, uses the Davis Autism Approach, a non-invasive, gentle method designed to allow autistic individuals to participate more fully in life. The approach, she said, draws autistic individuals out of the fog and into the real world.
Dodge Smith is stunned by the results of the program, which are relatively unknown in Canada. “It is like watching miracles unfold before my eyes,” she said. “During the first part of the program, I begin to see glimpses of the real person behind the autism mask.”
Working one-on-one with the autistic person, Dodge Smith said most intervention is behavioural, but this is not.
“We are teaching the individual how to be oriented,” she said. “At its core, (autism) is disorientation. They’re in their own little world.”
The director teaches them how to be fully present in the world — here and now. They come to understand how the world works and how they fit into it. Dubbed “individuation,” it allows the individual to build a perception of their senses to build a stronger awareness of self.
After undergoing a 30-hour week of therapy, the individual returns two weeks later for one-on-one treatments. Usually, Dodge Smith said, it’s a four-week program. She teaches sequencing, the importance of order, the ability to understand priorities.
“Whatever they want in their state, this allows them to begin thinking with these concepts,” said Dodge Smith, the former George Brown College Children’s Centre department head with more than 40 years of experience in special education and psychology. “There’s before and after, and the sequence didn’t make sense before (without the Davis approach).”
Modelling using white clay, Dodge Smith works with autistic people to explore the real world. It builds on a greater understanding of the world, which in turn strengthens identity and understanding.
“The white clay figures we make allow them to look at the world around them,” Dodge Smith explained, noting parents and caregivers are also included in the approach so they can learn to use it at home. “For them, the world is all about them. They’re not able to process that other people have needs.”
Through social integration, she is able to show an autistic person how the world works, how relationships work.
“That’s a huge block for them and they don’t get it…what do you need in relationship to another.”
Social integration is the third step in the Davis Autism Approach and its key concepts are the foundation of human relationships. These are worked on through clay modelling and can be built on, depending on an individual’s needs, she added.
Dodge Smith, 68, is a certified Davis facilitator, having trained under the program’s founder Ronald Davis. Davis has been working with autistic individuals for 30 years. The New Zealand man created the program and a small group of “Davis facilitators,” including Dodge Smith, are teaching it around the world.
She shared the positive outcomes of some of the Oakville Success Centre’s clients, including a 26-year-old female who was “a mess…on drugs, booze, and her parents thought they’d be supporting her forever.”
After completing the program, she has held a job, is off drugs and alcohol and experienced “a total turnaround,” Dodge Smith said. “She learned how to work with people, just by being here and being visible.”
The treatment is expensive at $3,600 per week and is not covered by any medical plans. Still, Dodge Smith stands firmly behind her work, in fact she came out of retirement to open the Oakville Success Centre.
“Sometimes it takes 3-4 weeks, but I’ve never heard of any individual that didn’t work out,” she said.
Oakville’s Peter and Elaine Rose placed their nine-year-old son Larry in the program and were pleased with his success.
“I honestly don’t think we would be achieving the success we have so far without Cathy and the Davis Autism Approach program,” Elaine said. “It played a huge part in helping my son to interact socially within his environment. He would not be in a regular class in school without it.”