Parents come together for autism support

Patricia Kitching, founder of the Autism Coffee Chat Support Group, back, and Caresse Seguin. The support group evolved out of the need to share downtime with other parents with similar experiences, and to advocate for improved services.

Children on wait lists outnumber those receiving support

Having a place to reach out for support can make all the difference for parents, but even more so for those parenting children with autism.

Patricia Kitching can easily recall the day she was told her three-year-old son had Autistic Spectrum Disorder (ASD).

“I suspected he had autism but I was still very shaken and scared when they officially told us. I didn’t know what the diagnosis meant for our future,” she said. Both of Kitching’s children have been diagnosed with autism.

Aside from the extensive testing and final diagnosis, there are a myriad of hoops to jump through in order to get needed health-care services. There are long waiting lists for assessments and vital, intensive behavioral intervention programs.

To reach out and find other parents in a similar situation, Kitching, who lives in Sudbury, formed a group 10 years ago called Autism Coffee Chat. The group evolved out of the need to not only share downtime with other parents with similar experiences, but to advocate together for improved and necessary services.

What started out with three or four mothers soon blossomed into 50 families participating in potluck dinners, special family outings and making public education presentations. The group developed an educational slideshow that they share with public service organizations, health-care professionals and those who seek to understand ASD better.

With social media, the group is now able to keep many families connected and offer immediate solutions and recommendations. Parents with older children are helping new parents facing similar challenges.

According to Health Canada, ASD, which includes Asperger Syndrome, affects about one in 150 children. The neurological disorder impacts the typical development of the brain in the areas of social interaction and communication skills.

If children are diagnosed and receive intensive early intervention, they often have more success in adjusting. However, there is a need for more awareness of the early signs of ASD among health professionals. Children and adults with ASD typically have difficulties in verbal and non-verbal communication, social interactions and play activities.

Child and Community Resources, which has offices in Sudbury and Thunder Bay, delivers the provincially funded Intensive Behaviour Intervention (IBI) program for families in the Sudbury/Manitoulin, Algoma/Sault Ste. Marie, Thunder Bay and Kenora/ Rainy River districts.

The IBI program uses applied behaviour analysis (ABA), a common method of autism treatment that instructs through repetition and positive reinforcement and requires 20-30 hours per week with a child. Ideally, they receive the treatment when they are between the ages of two and seven for most effective results, providing greater success for long term independence. However, the long waiting lists, sometimes several years, mean children are missing the best time to learn.

Caresse Seguin, the mother of two boys ages five and six, who were diagnosed with autism as toddlers, joined Coffee Chat to connect with other families and explore the same question Kitching had asked: what does the future hold for our family?

Seguin home schools her children and receives the support of occupational therapists and a speech pathologist.

However, it is often the mentoring support of the families that help her cope.

“Many medical professionals will have a particular understanding that may not be realistic,” said Seguin. Her son has additional medical issues that often get lost when trying to manage the autism and she has had to shop around for a suitable pediatrician to treat her children.

“The biggest issue is the lack of awareness,” she said.

When Kitching needed her youngest son to see a dentist at the age of nine, she went to the Coffee Chat group seeking a referral. Identifying health care professionals who can work with autistic children can be challenging.

However, one mother had a positive experience and made a recommendation.

“I called and asked for a house call,” she said. “The dentist was surprisingly supportive and sent two dental hygienists to our home during my son’s nap time in the afternoon. They were able to clean his teeth and make a referral for sleep surgery so that he could have additional work done on his teeth while under sedation. With their cooperation, what we take for granted in being able to just jump into a dentist chair, he finally had a chance to have healthy teeth.”

Kitching and Sequin are not alone as many parents of children with autism are advocating for better services.

In 2012, it was reported by the Ministry of Children and Youth Services that 1,400 children were receiving IBI support in Ontario and 1,700 were waiting.

Meanwhile, the Ministry has tripled its spending on autism with $116 million just for IBI programming. Ontario Auditor General Jim Mc-Carter will be releasing a report this month reviewing the services available for children with autism.

Facebook: Autism Coffee Chat

www.ccrconnect.ca

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