I’m not sure what the ‘typical’ evaluation process is when your child is being assessed for autism. Maybe most parents of special needs children feel this way, but I felt that it took a long time. I questioned the process, the psychiatrist, the results. After what I recall being a half-day session with my 6-year-old son and a 300-question parent survey, the results, diagnosis and recommendations came three months later. The day that the doctor was ready to share the results, I knew what he would say, or at least I thought I did.
The report was 29 pages, and the doctor painstakingly went through every page, every word, every chart. Somewhere between pages 17 and 20, I found myself drifting off sneaking a peek at my son, who was playing with Legos in the other room. What the clinical charts indicated about my son was certainly true, but the information didn’t capture the full picture of him. I knew that what was on page 29 would dictate the rest of his life, and I was trying to prepare myself for it. Then it came. His doctor read the diagnosis aloud, “Your son has a mild form of Autism Spectrum Disorder (ASD).” There was much more after that, but I tuned it out, walked out of his office and immediately hugged my son. Any parent can find themselves going down a rabbit hole after hearing those words. As a mother, you question everything. Was this my fault? Was it something I did wrong when I was pregnant? How come I didn’t recognize this sooner? Did I wait too long?
I went back into the doctor’s office, and he shared his recommended treatment plan, which was nearly as long as the assessment report.
Finding Hope After the Diagnosis
One of the first things he did was introduce us to Applied Behavior Analysis (ABA). According to the Center for Autism, ABA helps the autistic client improve social interactions, learn new skills, and maintain positive behaviors. ABA also helps transfer skills and behavior from one situation to another, controlling situations where positive behaviors arise and negative behaviors minimize. Controlling situations? I had not felt in control of my son’s behavior since he was an infant. Could this really work?
He then went on to discuss an Individualized Education Program (IEP). This is a plan to help your child achieve independence in a standard classroom and outlines modifications, annual goal setting and support services they can receive under this classification. So, a team of specialists will work with my child every day to make sure he is successful? Yes, please. Sign me up!
At that point, I was overwhelmed with relief. Relieved that it wasn’t (all) bad parenting. Relieved that I had a plan to help my son. Relieved that he would be able to overcome his daily frustrations. When we left the office that day – August 14, 2017 – it was the first day of our ASD journey, and one day that I will forever celebrate.
First Things to Do After a Diagnosis
- Take time to absorb the diagnosis. Take time for yourself, with your spouse and your child to let the diagnosis settle into your mind. As a newly diagnosed autism family, this is a time of change and transition. Before you make any major decisions, just let the diagnosis sink in to help ground you in what’s to come.
- Download free resources. With 1 in 59 children diagnosed with autism, there are millions of families across the country facing diagnoses every day. The good news is there is a lot of great information out there – from free downloads, podcasts, websites, local events – you’ll be sure to find the information you need to become more informed about your child’s diagnosis. One of my favorite resources that I found after my son’s diagnosis was the 100 Day Kit.
- Join local or online support groups. The old adage, “it takes a village,” is certainly true when it comes to raising and supporting your autistic child. Connecting with other families who are going through the same emotions, processes, behaviors that your family is experiencing, is invaluable. It can also fast-track your learning curve about ways to tackle the diagnosis. Here is a helpful list of support groups that you can join: http://www.act-today.org/resources/support-for-families/#supportgroups
- Get started with ABA therapy. Time is of the essence. The diagnosis is merely the first step in your child’s ABA journey. Finding a suitable ABA program, obtaining financial assistance or insurance approvals and undergoing assessments to customize your child’s ABA program can take some time to get started. I chose the Center for Autism and Related Disorders for their vast resources, support services and close proximity to my son’s school.
- Inform your child’s school principal. For me, telling my son’s principal about his diagnosis was one of the most difficult things I had to do. You are sharing a very personal and vulnerable trait about your child and asking for support (sometimes demanding it). However, this is an important step in your child’s ASD process. Take the diagnosis with you and ask about the support and services the school AND District offers.
Wrapping your head around your child’s diagnosis can be overwhelming. But in this time of awakening to autism spectrum disorder, it’s important to remember what matters most: the love that you have for your child and your drive to give them the tools they need to live a happier life. Your family’s journey doesn’t end with an ASD diagnosis. It is simply a new adventure.