My wife and I still talk about the moment. It was the moment when our world and expectations for our life changed by a simple phrase spoken by a doctor we had only met a few short hours earlier.
That moment was when our oldest son was diagnosed with autism. It was the moment that changed our lives and how we think about what it means to be parents, caregivers, and, yes, advocates on behalf of others like our son.
What was jarring for us as we had a 2.5-hour drive to go home from our appointment, and we each arrived separately. Our appointment was at the University of Louisville, and I got there after leaving an annual conference with my church in Covington, Ky. I met my family at the doctor’s office and began our journey into this new world. We did not have each other for that ride for moral support or initial processing. We were alone and not sure what we were doing.
Those initial few weeks and months were like a dense fog for us. We were overwhelmed with our emotions and not sure how to process everything. It can be like that for parents when they receive that diagnosis for the first time.
So, what should you do when your child is diagnosed with autism?
First, accept that you will go through the stages of grief. It might seem odd to experience grief over an autism diagnosis. The emotion of grief is not just about a loss of life. It can also come about through the loss of expectations or the heaviness of life. You will want to deny that the diagnosis is correct. You will find yourself getting angry over the smallest of things. You might even bargain and think that you should have done something earlier to get your child help. You might go through a bout of depression and sorrow. Eventually, you will find acceptance.
I experienced grief over the loss of the perceived world that my child would experience. I struggled with recognizing the typical father-son outings to a loud football game may not be possible for us, which was something I looked forward to doing with him. It took me approximately 3-6 months after his diagnosis to accept this new life for our family. I realized we were on a better journey of life, which opened us up to new possibilities and experiences that were fulfilling and live-giving for all of us. Recognizing that grief is natural will allow you to not get angry at yourself, and will help you grow in what it means to be a parent of an autistic individual.
Second, do not make rash decisions to care for your child. The initial weeks or months after receiving a diagnosis is no time to make life-altering decisions for your family. You are processing a lot in that time, and even if you think you are handling everything well, you are prone to make bad decisions that could jeopardize your family’s long-term well-being and the needs of your child simply by doing what you think would be best. Yes, make sure your child has resources, therapies, and the accommodations they need, but give yourself time to think through things like job demands, home environments, or moving to a new location.
Not making a rash decision was something I learned the hard way. As I was dealing with the various emotions that came after our son’s diagnosis, I began to contemplate a move to a new state to better care for our child. My motives were pure, I thought, in that we needed to be closer to family and have better access to support. I did not consider that we needed consistency for about a year to help us process what we were dealing with and time to live into the moment. We would have likely still made the same decision to move to another state, but we would have done so in a calmer and less panicked manner that would have led to a wiser approach to our decision-making process.
Finally, remember that your child is still a child of God and a person of worth. It is easy, especially at first, to only think of your child through the lens of the diagnosis. You look at expressions of stress, noises, or other things as signs that you need to respond. When we only see our child through the lens of a diagnosis, we forget what makes that child unique and special. They are always a child of God and a person of worth. An autism diagnosis does not change who they are. It helps us to see them for who they are.
That might be the biggest help for a new parent on the journey. Remember your child is still that beautiful, loving, adventurous, joyful person they have always been. They are not defined by a diagnosis. They are defined by God’s love for them and your love for them. It is important to never lose sight of that.
The journey can be overwhelming, especially at first. Taking these few steps here can help make it a little easier to begin to navigate.