When Linda and Tony DiMambro found out their son Anthony had autism two years ago, they experienced a wave of emotion.
“When we learned of Anthony’s diagnosis, my husband and I were both relieved, since we finally had answers almost a year later,” said Linda, adding the couple’s journey to look for answers in their son’s delay in speech and reaching development milestones began when Anthony was 18 months old. “We also felt scared, as we did not know very much about autism at the time.”
Anthony, 4, is on the moderate to severe side of the autism spectrum because he is non-verbal.
Linda said Anthony’s day is similar to that of other kids his age, as he attends daycare and is in junior kindergarten at St. Clare of Assisi Catholic Elementary School.
“The main difference is that Anthony requires a visual schedule to help him understand what will be taking place,” she said. “He faces several challenges, although the biggest challenge is the fact that he is non-verbal. He often gets very frustrated because he cannot tell us what he needs or wants and this will often result in tantrums.”
Linda said Anthony goes to speech therapy once a week, where he learns how to communicate using pictures.
“Anthony uses pictures at home, daycare and school, so he can communicate with his family, peers and teachers,” she said. “Another challenge we face is the transferring of skills where he uses certain skills in certain environments, but is unable to transfer the skills when the environment changes. As a result, we have a support worker who comes to assist us one night a week to teach him how to transfer the skills he uses at daycare and school at home.”
Linda said other parents of children with autism have suggested pursuing intensive behavioural intervention (IBI) therapy to further help Anthony.
IBI therapy is a structured approach to breaking down the barriers that isolate children with autism from the world around them, she added.
“It is based on the principles of Applied Behaviour Analysis and is the most common and proven method of autism treatment based on teaching through repetition and positive reinforcement; it is used to promote development and change in behaviour,” Linda said. “Research tells us that it should be commenced early because very young children can gain the most from this approach. IBI has been demonstrated to produce significant increases in cognitive language, preacademic and overall development of young children with autism to a point where about half reach levels of average intellectual abilities and function successfully in school without special supports.”
Anthony was placed on a waitlist for provincial IBI therapy funding in 2011.
Linda said he could be on the list for another two to three years.
The family will need to seek private IBI therapy in order to get Anthony involved in the treatment at an age when it is most effective, she added.
“The cost of IBI is about $60,000 a year for 15 to 20 hours per week delivered one-on-one by a therapist,” said Linda, adding studies have shown IBI therapy is most effective between the ages of four and six. “Our hope would be that IBI will help Anthony become high functioning and teach him self-help skills, as well as enhance his speech development. With this being said, we realize that no one knows what the outcome of the therapy will be, but right now it is our only hope.”
Family members and friends are holding a dinner dance in honour of Anthony to help raise funds for his IBI therapy and awareness of autism.
The event will take place on Friday, March 1 at 6 p.m. at the Michelangelo Banquet Centre, 1555 Upper Ottawa St. and will include door and raffle prizes. Tickets are $50 a person.
“Holding the fundraiser and raising the funds will mean that Anthony’s parents can enrol him in IBI therapy and give them hope that they will see him develop further,” friend and event co-organizer Angela DiFrancesco said. “Ultimately, they want to see Anthony become high functioning, so that he can one day be independent and self-sufficient.”
Angela said the number of children being diagnosed with autism is growing.
There doesn’t seem to be many resources to help families dealing with autism, she added.
“I think people should become informed about autism because it’s becoming more prevalent. I hope that we will get to a point where our health and educational systems are better designed and better equipped to help autistic people, but until then the burden lies with the families and they can’t do it alone,” Angela said. “The cost of IBI therapy is enormous, but it’s said to be the most effective therapy available for autistic children. This family needs to give their son an opportunity to overcome his developmental challenges and the funds raised will go directly toward giving him this opportunity.”
For more information on the event, to purchase tickets or make donations, contact event organizers at (905) 643-9639 or firstname.lastname@example.org.