ASD Diagnosis, Now What?

My child was just diagnosed with Autism Spectrum Disorder, ASD, now what? 

This is a question that is often asked by newly diagnosed parents. I can remember the immense feeling of overwhelm taking me hostage when my son Joseph’s diagnosis was confirmed. 

There was no more wondering, guessing and trying to prove otherwise. There it was in black and white, Pervasive Developmental Disorder, Not Otherwise Specified, PDD, NOS. 

Although this diagnosis is no longer used, it was just as overwhelming and painful. All I needed to hear was the word autism. My son was on the autistic spectrum. My son has a lifelong disability. To say my mind, body, and spirit were overloaded with fear of the future is an understatement. 

So, I thought to myself, now what? What is our first move in helping Joseph, our son? 

There was so much to process. I processed what this diagnosis meant for my son, my family, and myself. I decided to put myself on the back burner and move to what was most important to me at the time, which was finding ways to help my son. 

As parents, we all advocate for our children whether they are living with a disability or not. But the level of advocacy goes up when your child is diagnosed with ASD. 

Advocating has a spectrum just like ASD. Once Joseph was diagnosed I began living on the highest level of the advocacy spectrum. I am talking 24/7, every day, seven days a week. There was not one day that I took a break, even when I had a break. 

Being an advocate at this level will require strategy. 

In order to be an effective advocate, I want you to think of yourself as the quarterback of a team. You will be calling the plays for your child’s team. My team is called Team Joseph. 

What is your team called?

Your Team Name _________________. 

Now let’s create your team and look at who will be your team members. Your team members can change, so for today, who is eligible to be on your team?

List the most crucial therapies that you feel your child needs today. I will name a few as examples but remember you know your child best. 

1. Speech Therapy. 

2. Occupational Therapy. 

3. Play Therapy. 

Is there an educational facility in your area that can provide child care and therapies? 

If you do have an excellent facility then make sure you have the therapists and child care providers that are best for your child. 

Now list them as team members. 

1. 

2. 

3. 

4. 

If you are in a rural setting like I am, you may have to dig a bit deeper in finding your team members. Do not worry, there will be excellent candidates for your team. I found some of the best caring facilitators in my small town. 

Ask parents, teachers, anyone in your community that could give you some potential team members. Interview each candidate of your team to make sure they are a good fit. They will need to understand what their role is as a team member.

Once you have your team put together, it will be essential that you lead each team member including you and your child. 

As you lead your team members, I want you to remember this statement: You are the most important team member other than your child.

Taking care of yourself is the most essential piece to any and all strategies along the ASD journey. I shared earlier how I put myself on the back burner. If I had a do over, I would have put my needs at the top of these strategies. This is a lesson I learned and I am paying it forward to all of you. 

I will discuss advocacy and how to navigate as the team leader in future blogs and podcasts. For today, take a breath and begin to create your team one small step at a time. 

Your first tiny step is to do something kind for yourself. My hunch is that you will want to skip this step but remember you are the most important team member other than your child. 

What is the small act of kindness you can do today?

My Small Act of Kindness is: _________________ 

You Got This!

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