AT HOME WITH
Our backyards vary in shape, size and structure. Some are filled with beautiful and plentiful gardens, while others serve as our children’s playgrounds. Some have trampolines and play equipment; others are filled with covered patios made for family gatherings and grilling burgers. These are typically private spaces we use for relaxation, recreation and to escape the realities of a world full of uncertainty.
In our places of escape, some of us are open to the world peaking in, while others build strong and tall privacy fences to shield out unwanted advice of our choices. Some of us are okay with the feedback and speculations from our “neighbors,” while others desire privacy and solace that a privacy fence offers. But, what happens when different members of the family disagree on whether or not a privacy fence is necessary for their backyard?
This issue arises frequently in my office in regards to sharing of diagnoses and treatment for children impacted by autism spectrum disorders. “Do we tell our friends that my child has an autism diagnosis?” “How do we help our family understand autism?” “How much information should we share?” “What if we don’t tell others?” “If we tell others, will that change their perception of us as a family and of my child?” The questions repeat themselves over and over in the four walls of my therapeutic office and the answer is always the same.
There is no right answer. There are varying levels of comfort with the expectations that others can empathize with our current situation. There will be people who open their arms to you and offer as much support as they possibly can within their level of knowledge and education on autism. There will be people who feel uncomfortable with the news and will be confused in how to respond or react. Others will respond by distancing themselves so they can process the information and try to figure out how they will continue the relationship. Some friends and family will offer unwarranted and undesired advice in attempts to try to make your family feel as though they understand. Unfortunately, like many circumstances in life, the unpredictability in human behavior is often just that…unpredictable.
As human beings, we naturally build these privacy fences that allow us time to contemplate and dissect the potential behavior of others. Based on our own personalities, we cope with these situations in ways that have historically given us the best outcomes. For some, it’s to jump right in and tackle the unpredictability head on. For others, it is all about building that privacy fence as sturdy and high as we can until we can begin inviting our “neighbors” in through the gate. The advice I can offer those who are teeter-tottering on the choices that present themselves in these types of situations is to do what feels right.
Regardless of the timing for sharing more about your personal and confidential matters with others, I want to offer you a few strategies for the disclosure. As a behavioral therapist working with children impacted by autism and their families, I often train families to utilize scripted responses with the children. I’m recommending the same for the disclosure to friends and family in regards to disclosure of diagnoses and treatment.
“We recently had Johnny evaluated and discovered that he shares similar symptoms to those impacted by autism spectrum disorders. We are still learning about autism and would love to help you understand more if you are interested.”
“The other day was a (insert own feelings here—“shocking” “eye-opening” etc.) day for us. We learned that Johnny is impacted by autism. We would love your support through this learning process.”
Statements about the child who received the diagnosis:
“We recently found out that Johnny has symptoms similar to those impacted by autism. We are feeling (insert own feelings here—“lost,” “scared,” )in this journey but remain hopeful that we will be able to understand him more. We would love your support through this learning process.”
When receiving unwarranted advice from others about how to work with your child impacted by autism:
“I am grateful to have a friend/mom/aunt like you who cares enough to want to help us with Johnny. It means the world to us that you care. We are currently working with a team of professionals who are helping us along each step of the journey.”
To those who distance themselves from you after disclosure:
“I have a feeling that you are unsure about how to respond to the recent news of Johnny’s diagnosis. It can be difficult to comprehend. I get it. We are still learning every day, too. Some days are harder than others. Your support is important to me. Can we grab a coffee or go on a walk soon?”
While these responses are not all encompassing nor will they always elicit the desired response from our “neighbors,” they are a starting point in facilitating a meaningful conversation that allows your most trusted allies through the gates. These allies are what keep our personal lives balanced and healthy. Maybe not today, but someday, we must build gates to our privacy fences so we do not seclude ourselves from the outside world. As comfortable as it may feel, the approach of secluding ourselves from the outside world becomes lackluster, and we may find ourselves fading into our own worlds, which limits exposure to social relationships for our children who desperately need it. It’s OK to take your time in building those gates into your private world, but try not to shut out the idea of gates.