The diagnosis of ASD has rocked your family to the core. So what do you do now?
The day a parent hears their child has autism has been described as bitter sweet. On one hand, you may be relieved to know for sure that you are not imagining things. On the other hand a diagnosis of autism can send you reeling. The life you scripted for your child has to be rewritten with words you don’t understand.
The question many parents ask that day of diagnosis is: what now? But very often they are not given an answer. Unlike a diagnosis of diabetes or even cancer where parents are given stacks of information on what to do, what to expect and who to call, parents of ASD kids are given little to no information on next steps.
“They’re (parents) still given for the most part one phone number,” says Suzanne Lanthier, Executive Director of Autism Speaks Canada. “And they’re left up to their own devices and they go online and they type in autism Canada or autism Ontario or autism Toronto and a billion things come up, some that are valid, some that are not.”
So what we can provide is some valid information to take away with you gleaned from experts and parents like yourself who learned a little bit along the way.
Here are some first steps:
- Take time for yourself: You may be experiencing a tremendous amount of stress, anxiety and guilt. You are grieving. You and your whole family will need someone to talk to. Even if you are not in the Toronto area, contact the Geneva Centre for Autism. They can give you some ideas on where to find parenting groups, support groups or therapy in your area. They can also help you find therapy that is on a sliding fee scale if finances are an issue.
Or talk to your doctor about accessing therapy through OHIP. Some therapists are also medical doctors so they are covered. There are ways to get around the cost and it is essential that you make this a priority.
- Put yourself on the waiting list: You will hear it again and again that early intervention is key but that makes it hard not to feel incredibly frustrated and helpless when you are confronted with waitlists—and you will be. So no matter what treatment you eventually decide upon, find out where your regional service provider is and put yourself on the waiting list.
- Do not wait to get started: There are things you can do now that will not cost you anything. Contact the treatment centre in your area and ask about classes or seminars teaching parents treatment techniques.
Connect with the Ontario preschool speech and language service in your community. The services are free for preschoolers.
- Be skeptical: Since you are reading this, chances are you’ve done what Lanthier says many parents do: you’ve gone online frantically looking for definitions, treatment options or even cures. There is a lot of misinformation and frankly snake oil salesmen online, so we have compiled a list of web sites that can give you reliable information. Look for the links in the resources section of this article.
- Know what you're waiting for: Understand that your child will be assessed again by the service provider. So you are not on the waiting list for treatment, you are on the waiting list to be assessed. Once your child is assessed, and it is decided that treatment will move forward, you will have to wait again for treatment.
- We can help: Listen to our podcast with families just like you.
- Listen to a podcast with Margaret Whelan, Executive Director of the Geneva Centre for Autism.
- Listen to a podcast with Dr. Anne Kawamura, a developmental pediatrician in the child development program at Bloorview Kids Rehab.
Remember that all parents want their kids to be the best they can be for themselves. You can help your kids reach their full potential. But make sure you take some time for yourself. Your stress can wear off on the kids so consider making time for you part of the treatment plan.