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New diagnosis of autism? The most powerful things to do now.

Read time: 4 minutes

When your child get a diagnosis of autism, your world seems to dramatically change in the seconds before and after the words have been said. I have spoken with many parents who were simply not expecting the diagnosis when they went in for the assessment.  They had an image in their mind of a severely disabled person and that simply wasn’t the case for their child. 

What is the autism spectrum? 

Autism is a neurological (meaning it has to do with the brain) developmental disorder.  It affects how a child learns and develops in 3 main areas: social skills, communication skills and restrictive or repetitive behaviours.

Many people use the language ‘high functioning’ vs ‘low functioning’.  This can be very misleading. Many people think of the autism spectrum as being a linear spectrum. This representation doesn’t quite fit the autism spectrum, because there are three core symptoms of autism. There’s a newer way of conceptualizing it, that was created by Michael of 1autismdad.com in 2012. 

Imagine a blank sheet of paper with a dot in the middle.  This dot represents neurotypical development (non-asd). Near the top of the page in the middle imagine the words “communication deficits”, near the bottom left of the page imagine “social skills deficits” and on the bottom right corner imagine Stereotypic and repetitive behaviours. Each person with autism will develop needs in each of these areas differently.  You can visualize a person’s needs by how long the path is from the middle (neurotypical) to the core symptom. Some might be very impacted in the communication and social skills areas while they show very few (or none) stereotypic and repetitive behaviours. 

Autism triangle: a new way of thinking about the autism spectrum by asddad.com
Retrieved from: https://www.1autismdad.com/home/2012/03/14/visualizing-the-autism-spectrum on August 1, 2020

Top 5 things to do when your child get a diagnosis of autism: 

There are a number of resources that you can access when your child is first diagnosed.  Here are my to 5 recommendations of things to do: 

  1. Notice the small things – Your child might have difficulty with a lot of things, but try and pick out the things that your child excels at. You might need to be creative here, but it’s a good reframing exercise and will help you to focus on something positive instead of only the negative. 
  2. Reach out to others from the autism community.  There are a number of support groups on Facebook and other social media platforms.  You’ll find many people who understand exactly what you’re going through and who have been through it and survived.  It might take you a while to find your village, but once you do you’ll be so glad you spent the time to reach out. 
  3. Celebrate every victory. Learning something new might be very challenging for your child.  When they achieve a new milestone you should celebrate it loud and proud! 
  4. Create a self-care routine for yourself and your partner. You will feel compelled to spend every moment focused on your child’s therapy/friends/development. You must keep yourself healthy so you can be the best possible advocate for your child. Remember the flight attendant’s advice: always put your own oxygen mask on first.  You have to take care of yourself if you want to take care of others. 
  5. Create a team for your child.  There will be a lot of people in your child’s life: doctors, therapists, teachers, support workers and more.  You will need help to coordinate everything that needs to happen in order to set your child up for success. Find people you trust and who have values that align with your own.  

Don’t forget…

Your child is the same lovable, adorable, smart, deserving little person they were before they got a diagnosis of autism. There are times when the label is important and there are times when it is irrelevant. Try to think of the diagnosis as a path, that will lead you to treatments and strategies that will help your child. Also, having a diagnosis opens up doors for funding, supports and specialized programs.

Connect with Side by Side Therapy to discuss your options and what interventions would be best for your child and family. We offer no-charge and no obligation consultations to help guide you in making the right decisions for your child’s future.

Ontario Autism Program (OAP): a short history.

Early 2016

The government announced a huge investment into a new program called the Ontario Autism Program. This announcement was very exciting at first. Once it was studied the reality sank in: children would be removed from intensive services at age 5.

In June 2016

Michael Coteau, the Minister for Children and Youth announced changes to the Ontario Autism Program. The plan was to offer evidence based Applied Behaviour Analysis services at amounts that were based on need. Families that had been removed from IBI would receive $10,000 instalments until the new program was introduced in 2017. The children entering the Coteau plan would be the luckiest in the province, receiving the most therapy for the longest duration.

Boy reading a book as part of his Ontario Autism Program funding.

From the start, the government presented it as a program that they would improve and expand. The foremost goal was to facilitate access to therapy and reduce the financial burden on families. Key points of the OAP included: family-centred decision making, individualized intervention and the possibility to choose a specific private provider.

Changes to the OAP in 2018/2019

Doug Ford became the Premier of Ontario in June 2019. He brought a new government, changing from a Liberal government to a Progressive Conservative majority. In September 2018, the Ford government quietly instituted a pause on new service offers to children on the waitlist.  This freeze dramatically increased the waitlist. A few months later, Lisa MacLeod, the Minister of Children and Youth used the ballooning waitlist as the reason for making dramatic changes to the OAP Funding.  

In February 2019

Lisa MacLeod, announced a “new and improved” version of the OAP. This plan provided Childhood Budgets to autistic children. The budgets were based on the child’s age when they began therapy. Younger children being eligible for much more funding than older children. One element of the childhood budgets was income testing, meaning that families with higher incomes would get less funding. There was no consideration for any extenuating circumstances (level of need or availability of services in the child’s location).  

In March 2019

Lisa MacLeod announced that SLP and OT services would become eligible expenses for the childhood budgets. She also announced that the income testing would be removed. The announcement also allowed children currently under the Coteau OAP to have their funding extended for an additional 6 months. 

In June 2019

Todd Smith took over the Autism file when Lisa MacLeod became Tourism Minister.

In December 2019

Todd Smith announced that the province would follow the recommendations of an Advisory Panel it had established. Despite having previously stated that the new program would be ready by April 2020, Minister Smith stated that the new program would be implemented by April 2021. The reason for the extra year was to let the province to ‘get the program right’. The main recommendation was to move back towards a needs-based funding model and to remove the childhood budget. 

The province also announced that they would begin offering one-time funding payments to families. These payments were based on the child’s age to bridge the program until the needs-based funding could be rolled out. Children aged 1-5 years would receive $20,000 and children between the ages of 6-17 years would receive $5,000. The newest OAP would include 4 pillars:

  • Core Services
  • Foundational Family Services
  • Early Intervention and School Readiness Services
  • Mental Health Services. 

Where do families stand now?

Some children are still on the Coteau OAP program. These children are called ‘Legacy Kids’. Some children aged out of the program and received nothing. Some families accepted childhood budgets and have spent those funds. They should apply to receive one-time funding. Many other families on the waitlist still have not received invitations to apply for the one-time funding. 

The Covid-19 pandemic has totally upended the therapy of autistic kids because most providers were forced to stop services. The province has extended the deadline to spend the one-time funding by 6 months in an effort to give families time to use their funds. Service providers are gradually beginning to reopen. Families are scrambling to put together teams for their children.

Much of the information in this post was taken from the Ontario Autism Coalition’s website.

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