The puzzle of autism

More than 200 children and youth in the Comox Valley live with a diagnosis of ASD

Comox Valley parent Samantha Schneider knows from experience that the actions of a child with autism are often misunderstood.

“Our biggest challenge has been with other people, their perceptions or ideas of what autism is or isn’t, like being out in public and we’re having a difficulty like our daughter licking windows on the ferry and someone is commenting on the behaviour, not really understanding what autism entails,”she said.

Autism Spectrum Disorder (ASD) is a developmental condition that impacts typical brain growth. As a spectrum disorder, ASD has a wide variation in how it affects each person’s skills and abilities. The learning, thinking, and problem-solving abilities of people with ASD can range from gifted to severely challenged.

People with ASD may communicate, interact, behave, and learn in ways that are different. Common characteristics include difficulties with communication and social interactions, repetitive interests and activities, and stereotypic motor behaviours.

“On a personal level the biggest challenge for us has been safety,” said Schneider. “Having a child who does not really understand danger, jumping in the river is a bad idea, or running off across the road without looking is a bad idea, that’s been very challenging and very scary as a parent.”

ASD occurs in approximately one of every 68 births, and may appear during the first three years of life. It is four to five times more common in boys than girls — affecting one in every 40 boys — and is the most common neurological disorder in children. Given the one in 68 prevalence rate, it is estimated that there are approximately 60,000 people affected by ASD in British Columbia – 10,000 under the age of 19 and 50,000 adults. More than 200 children and youth in the Comox Valley live with a diagnosis of ASD.

No one knows what causes ASD or why the prevalence is rising so quickly, but at present it is believed to be the result of a complex array of genetic and environmental factors, plus earlier and better detection and diagnosis.

Around the world, puzzle pieces have been adopted as an emblem by the autism community because autism continues to be a puzzle with many pieces.

There are effective treatment and intervention methods that can help individuals and their families address the characteristics of the disorder. Early interventions based on best practices are intended to help children with ASD to develop skills, to learn to communicate effectively, to share in family life, and to enjoy success at school.

Children and parents can benefit from intervention and community supports and with this assistance an increasing number of adults with ASD may be able to live independently.

The Comox Valley Child Development Association (CDA) has been providing early intervention programs for children with a wide range of developmental delays since 1974. With the growing number of children diagnosed with ASD, and emerging research and practices for treatment, the CDA saw the need for a local specialized program for children with ASD.

In 2005, the CDA established The Autism Program (TAP) to provide evidence-based intervention services for children with a diagnosis of ASD. TAP complements other services offered at the CDA, such as speech language therapy and occupational therapy. Starting small with just five children, today TAP provides services to over 50 children and youth with ASD each year. During the school year TAP provides weekly services for preschoolers and school-aged children. During the summer TAP provides a two-week day camp for older school-aged children and teens.

Services for children under six are based on an individualized program that may include one-to-one intensive teaching, natural environment teaching, as well as peer and small group teaching. The individual programs are designed by a team of behaviour consultants and implemented by autism interventionists.

Since Samantha’s daughter started attending TAP she says there has been a marked improvement.

“We’ve noticed huge improvements in self-regulation, that’s probably her biggest improvement and also self-awareness,” said Samantha. “She’s also increased in her social skills and her safety skills.”

Services for children aged 6 to 19 take place in small groups with the focus on social and academic skills. The goal is to help create friendships and peer interaction. Behaviour consultants develop a personalized program for each student. An autism interventionist leads each group with a focus on practising activities to share with friends and learning the social skills to make and keep friendships. Groups take place after school at the CDA. Community field trips are an important feature of these groups.

With success comes challenges, and for TAP and other services for children with ASD the challenge is space. TAP is bursting at the seams and therapists need more space to accommodate the growing number of children with ASD. The CDA is fulfilling a dream to build an ASD Centre of Excellence. Along with more space for individual and group work, comes a small gym and much needed space for family meetings.

Construction continues on the Comox Valley Child Development Centre’s new Autism Centre, which is on time to be opened later this fall. Photo submitted.

“TAP is really great at involving the whole family and having team meetings and seeing what the whole family needs in order for their child to succeed,” said Schneider.

Due to severe food sensitivities, preparing food and eating a healthy diet is a huge challenge for many children with ASD so a child-friendly kitchen is a key part of the new space. Toilet training is another challenge, with many children needing a much longer timeframe to establish regular routines for toileting and self-care skills. Additional toilet space is another major improvement in the new space. In keeping with the puzzle motif puzzle pieces will be used throughout the building for signs and decoration.

Local builders and suppliers are very generous in their support of the new Autism Centre, donating time and materials to the project. The centre is on time and on budget with a finish date in mid-November. Children, families and staff are eagerly looking forward to the new centre and the new possibilities it will bring.

Schneider has words of encouragement for other families. “My advice for someone just starting on this journey is it’s not all doom and gloom, there are so many positives and if you focus on the successes as well as meeting the challenges, it just makes it so much easier to handle because the successes are so huge when they happen.”

The Comox Valley Child Development Association provides services for children, youth and young adults with special needs and their families. Last year over 700 Comox Valley children and their families used services at the CVCDA. The CVCDA is located at 237 3rd Street Courtenay, BC, 250-338-4288. For more information visit www.cvcda.ca.

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