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Lack of autism support frustrates families

Final installment in the four-part Metroland series, Navigating Through the Fog

Somewhere in Ontario, a child would rather line up his toy cars than navigate them through an invisible maze.

Somewhere in Ontario, a mother looks at her child and instinctively wonders. A doctor tells a father they should wait and see.

Somewhere in Ontario, the diagnosis is confirmed — autism spectrum disorder (ASD).

Approximately one in every 100 children lives with autism, a neuro-developmental spectrum disorder that impedes a person’s ability to communicate and make friends.

Statistics indicate up to one per cent of the population is on the spectrum.

The cause of the disorder remains unknown, but researchers believe the secret is in the genes.

With no cure for autism, families affected by the disorder have turned to a variety of therapies that have proven successful in alleviating its wide-ranging symptoms.

But accessing help is easier said than done.

This is the final installment of a four-part Metroland series, Navigating Through the Fog, that attempts to piece together the puzzle of autism.

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“When you get this diagnosis, not only does it rattle your world, but you are given absolutely no direction as to what you can do to help your child.”

Burlington mom, Lizanne Rowe, didn’t know where to turn when her son, Jack, was diagnosed with autism spectrum disorder (ASD). And she’s not alone.

Many families interviewed for Navigating Through the Fog, a four-part Metroland West Media Group series on autism, spoke of the lack of support they received from medical professionals after their child — or children — were determined to be on the spectrum. One Waterdown mom, who requested anonymity for fear her daughter with Asperger’s syndrome would be labelled as special needs and treated differently by her teachers and peers, was at a loss.

Asperger’s syndrome is an Autism Spectrum Disorder (ASD) that differs from typical ASDs in that those who have Asperger’s are generally high functioning.

They can usually speak, and cognitive development is also intact.

Faced with a lengthy wait for treatment, the nine-year-old girl’s blended family would welcome the opportunity to access services tailored for individuals living with autism spectrum disorder, but finding those resources were next to impossible.

“The support for families is non-existent,” said the Waterdown mom. “If there was help, we could have been at a different level right now, where we are coping and happy, and she’s happy.”

Burlington’s Christine Poe had to secure $45,000 to ensure her son, Dorian, would get the last spot available at Burlington’s Woodview Learning Centre. She was left to her own devices to learn of the Flatt Road facility and other supports to help the family.

However, there are numerous organizations throughout the region dedicated to offering supports and therapies to those affected by ASD.

Autism Ontario, which operates a chapter in both Hamilton and Halton, focuses on education, supporting research and advocating for programs and services for the autism community. From one-on-one support to information on different programs, therapies and government funding, Autism Ontario is a vital resource.

“Our coordinators will help them find the best path for their family,” said Trish Simons, president of the organization’s Hamilton-Wentworth chapter and mom of three boys on the spectrum.

While facts on the neuro-developmental disorder are available at the chapter, so too is access to other families that are experiencing a similar journey. Events, including monthly meetings featuring guest speakers, as well as social gatherings, help families get out into the community and enjoy fun activities, such as swimming, bowling or movies.

“We’re a place where families can find a little community of people who are going through the same thing you are,” said Simons. “With us, you are safe.”

Many of the Autism Ontario programs are offered at no charge or can be accessed for a nominal fee.

“We really just want to give the families an opportunity to experience a typical life, typical community life with their child with autism without feeling pressured or scared or uncomfortable,” said Simons.

Rowe, Jack’s mom, gained valuable insight from attending an annual conference on autism, hosted by a naturopathic doctor Sonya Doherty, of the Natural Care Clinic in Burlington.

The third annual Emerging Trends conference is designed to educate parents, caregivers, teachers and members of the health and medical community on new biomedical strategies in treating symptoms associated with autism, attention deficit hyperactivity disorder, obsessive compulsive disorder, pervasive developmental disorder and Tourette syndrome.

“It’s very educational,” said Rowe of the Emerging Trends event, which she helps coordinate. “It’s definitely a learning experience.”

The day-long Burlington event, attended by some 125 guests, features guest speakers, exhibitors and lots of information to help families navigate through the fog of autism.

“There is hope,” assured Rowe, who has spoken at the conference about her family’s experience. “It doesn’t have to be the worst diagnosis in the world when your child has autism; it can be that your child has unique needs and perhaps unique abilities that other children don’t have.”

Autism spectrum disorder falls under the Ministry of Children and Youth Services’ umbrella. The provincial ministry offers resources to families, depending on how severe their child’s autism symptoms are. They include support services, such as advice, information, material, consultation and training to get children ready for Intensive Behavioural Intervention (IBI).

Technology, too, has proven to be a reliable and effective tool for children and adults with autism spectrum disorders, says a pair of experts from Peel Region. By using the iPad and other devices, families can now communicate with their children and help them develop cognitive, motor and speech skills, said Jahmeelah Gamble, a developmental services worker.

Milton’s Alicia Cockhill, 5, was diagnosed with Autism Spectrum Disorder at age two. She doesn’t talk and communicates only by pointing at various objects. For her mom, Angela Oversby, the iPad and its various apps have had a huge impact on making life simpler. The device and its programs help entertain and brings her happy, playful side out from the fog of autism.

Communication aids (devices or improvements made to the wheelchair or installed in desktops) have to be specially ordered and are not cheap, Gamble said. Typically, they range from two to tens of thousands of dollars. On the other hand, she noted, iPads are easily available and can be brought from the store. “The beauty of it is there are apps that cost just $4.99. Some are even free,” she said.

Traditionally, some parents of autistic children use a book with a clip art of pictures known as Picture Exchange Communication System (PECS) to understand their child’s needs, said Gamble. Often these would be in bulky folders that had to be lugged around.

In Oversby’s case, finding the right gift for Alicia is never an issue; Apple iTunes gift cards are all she needs to download the latest autism educational application. The iPad not only stores a digital version of PECS, it can help create custom-made ones, said Gamble.

Clinicians working at ErinoakKids Centre for Treatment and Development’s autistic services were initially skeptical about touting the iPads, but a few years ago they decided to test and see the results first hand.

One child who was considered ready for technology was able to proceed with labels and identification faster than what the clinicians anticipated and within a matter of six to nine months had a good receptive vocabulary, said Anita Ramani, associate clinical director of autism services at ErinoakKids, which has its offices in Mississauga.

Ramani cautions not all children take to technology. What works for one child may not necessarily appeal to another. She found while some children took to technology easily, others were put off by it.

Being a mom to an autistic son is no easy feat, something Katrina Carefoot, of Oakville, knows all too well.

To help her cope with challenges, she takes to the Internet, where she maintains a popular blog. It’s on that online site that she shares personal experiences and celebrates her son, Max’s successes.

“It was really important for me to share with family and friends, now it has become a bigger thing,” said Carefoot. “I think a lot of people in the autism community draw a lot of inspiration and hope from Max’s story.”

Blogging, she said, is therapeutic and offers an opportunity to “celebrate a little boy.”