If you are a parent that has received an autism diagnosis for their child, it can feel extremely overwhelming. I will share my story of having my two youngest diagnosed with autism and give you some tips that helped me in the early days of getting the diagnosis.
My middle son was diagnosed with autism in 2016. I vividly remember sitting in my car in the underground parking lot, alone, sobbing. Even though I had known this was a potential, it still is hard to hear the words, "Your child has autism." The rest of the report out from the psychologist was a blur.
In the coming days, I went into hyper-focus mode and read the recommendations on the report, determined to follow through on every single one of them, but was completely overwhelmed. Where do you start and what service will be good for your child?
By the time by youngest daughter was diagnosed, I had supports in place for my son, but it still felt as if I was starting fresh, as my daughter's needs were quite different than my sons. And even though I had travelled a similar road before, it still felt quite bumpy. My hope is to share my strategy for accessing supports so that it may help another parent or family.
Take a breath and allow yourself space to feel.
Start with the essential paperwork
Okay, if you are a parent of a child that has received an autism diagnosis in BC, then you are able to apply for autism funding. If your child received a different diagnosis, you may still qualify for support from the ministry, but honestly, there is not much. In BC, an autism diagnosis receives funding, whereas other diagnosis' do not. It is not fair or child centered, and we need to band together to change that. But, that shall be another blog post as I truly believe all children should receive funding and that parents should not get a diagnosis and have it be crippling to their family finances.
Fill out the paperwork given to you by the psychologist and submit to the Ministry of Children & Family Development Children and Youth with Support Needs. You can find more information here. It can take a bit of time, but you will have a meeting with a social worker and get your paperwork submitted to start receiving your autism funding. I highly recommend once it has been approved, to set up your account on the portal. Submitting paperwork is a lot easier on the portal versus filling it out and mailing it in.
What supports do I need?
This can vary depending on the age of your child. If your child is under 6 years old, then you have to use professionals on the RASP (Registry of Autism Service Providers). These consist of Behavior Consultants, Speech-Language Pathologists, Occupational Therapists & Physical Therapists. For more information of these types of therapy, read here. If your child is over the age of 6, then your options for therapy open up and are less restricted.
Picking your support team depends on a few factors:
What areas does your child need support in? Do they need help with communication or maybe they need more sensory supports? This will help you decide where to start.
What are your beliefs? What type of therapy aligns with your values?
How many hours of support a week would you like for you child? Some therapists can cost more than hours and this may effect the number of hours of support they will receive.
How long are the waitlists for support? Are you willing to try a different support while waiting for the therapist you really want to open up more appointments?
Meeting the therapist or service provider
It's your child and your therapist/service provider will be a big part of your life, so you want to make sure that your values align and that they are good fit for your child. Use your first meeting to get to know them and ask as many questions as possible.
Some potential questions:
How do they handle any behaviors that arise?
Do you work collaboratively with other professionals?
Do parents have to stay on site for sessions?
Do you charge extra for reports?
Will you attend school or team meetings?
Can you bill AFU directly?
How do you determine what goals you will work on?
How do you track progress and report out?
What is your cancellation policy?
Sharing the Report
It's up to your discretion who you share your child's report with. I am big on collaboration and working together, so I shared my children's report with their home team and the school. I felt it important for us all to be on the same page and for my child to get the supports they needed, especially within the school system.
To note, if you want the school to receive funding for your child so they can access additional supports, you will need to share the report so they get assigned a ministry designation.
And, don't forget to take care of yourself and build in time for self care.
Through all of this, remember you will need to lean on your community for support and take care of yourself in the process. If you haven't already, read the blog post I wrote about self care for some additional tips and tricks.
And, please feel free to reach out to me anytime if I can help you during this journey. My favorite part of this job is connecting with parents and sharing resources. Connect with me here. Anytime, I mean it, I really enjoy making connections and supporting parents. I would be honored to support you on this journey in any way I can.
About the Author:
Koryn Heisler is the owner and founder of This World's Ours Centre in Vancouver. She is mother to three children, an advocate, an author, and an educator.
Learn more about her and her organization at www.thisworldsours.com