Mom Shares Ways to Explain Autism to the Extended Family
Coming to terms with an autism diagnosis on a purely parental level can be indescribable. There is an entire spectrum of emotions that range from inconsolable sadness to incomparable relief when help has finally been found. It is a uniquely personal and sometimes misunderstood human process of emotions.
I am told by various individuals that some people can pass through the same stages of grief when a special needs diagnosis is discovered as they would if they had lost of a child. I personally was one of the “odd” people who first felt relief in the initial diagnosis of high-functioning autism in my son, though I quickly realized that other emotions were just over the horizon. On the one hand, I indeed felt sadness, but on the other hand, after two years of trying to understand why my son was not acting like every other boy his age and blaming myself, relief was the only emotion that felt real.
Even though my first response to the child psychiatrist was, “Thank you for finally giving us some answers,” after leaving her office that day, a wave of emotions hit me that I was not prepared to feel. These were relief, sadness, hopelessness, anger, disappointment, loss, enlightenment, and understanding—the list goes on and on.
I believe most parents of a child with autism know where I am coming from. I was only 24 when I was given my son’s diagnosis, and he was a little over three years of age. I remember sitting in the parking lot of the appointment with my two little ones buckled in the backseat, just crying my eyes out on the phone to my husband.
The tears subsided over time, and we rose above the diagnosis to view our child as a gift, rather than a hindrance. But I admit, it took time. In a period of extreme uncertainty in our own immediate family’s life—which included myself, my husband, our three-year-old son, an 11-month-old baby, and a just-announced third child on the way—we were overwhelmed, yet we had no choice but to push onward.
We had another task in hand, as we had to relay the information to our extended family members. While we may have felt as if we tackled the worst of our initial impact on our own life, there is nothing that prepares a person for relaying the diagnosis to the extended members of a family. I would love to state that everyone will be supportive and on board, but from our own experience, you need to be prepared to watch each member of your family process the diagnosis in his/her own way and on their time.
Each person will, and is entitled to, their own process of emotions, and the impact of the initial emotions can be a rollercoaster ride in itself. For myself and my husband, we wanted to find the best way to relay the information in concrete and relatively unarguable terms in order to fully explain the ‘whys’ and the ‘hows’ to our family members in the calmest setting possible. After a few nights of careful consideration, we came to the conclusion that an informational written explanation to be read aloud would be the best way to present the information.
Emotions cut through the room like a knife as we invited our families to sit down and began the briefing process. We asked that everyone keep their questions until the end of what became our speech. We began by presenting everyone with the diagnoses we were given, telling why it was given, and explaining autism spectrum disorder (ASD).
We went on to share ‘why’ and ‘how’ we ourselves came to accept a diagnosis on such a young child, and we assured everyone that we were not blindly led to this conclusion, but had seen multiple doctors resulting in the same diagnosis. We laid out what our plans were with our special needs child, and we summed up our time by reading a plea asking each person to accept our decisions. We asked our families to help us with our future rather than to hinder us by questioning our every move.
As much as I wish I could state that I was prepared for the varied responses ranging from anger, to tears, to silence, I honestly was not. I am, however, extremely thankful that I wrote out that informational sheet for each family member to hold on to, because that sheet is what, I believe, held back most of the inquisitive remarks over the years. With that tiny three-page paper, family members possessed something concrete to reference every time a question crept into their minds.
Now, four years after that initial meeting, I can state that most of the questions are out of the way, and we have all moved on to help this child function at his daily best in life. It is a life I never dreamed of having, but a life that I would never want to live one day without.
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I only have one wish for all of the families beginning the path of loving their own, unique gift of a child with ASD, and that is that you may be led to the life that you were meant to possess by experiencing the largest growth in yourself. It is a life that may, in fact, bring you to your knees, but a life nonetheless that is helping an extraordinary child feel loved in his/her own unique way of processing such a complex emotion. A love that leads you to grow into the feelings of happiness by making an amazing impact on the world. Both you and your child hold the possibility to affect change by your loving example, which all begins with learning to abandon your own selfishness for your child.
Janele Hoerner is the author of Loving the Soul Beneath the Autism: An Interior Analysis of the Impact a Special Needs Child Bestows upon the Family. Her book details her son’s life, from in utero, to his diagnosis at three years of age, to concluding with the beginnings of his first year of school at five years of age. She believes her son is the greatest gift that she has ever received and wishes to help all individuals come to understand that people with special needs are an important part of our society. She lives with her husband and their five children in Lancaster County, PA.
This article was featured in Issue 58 – The Greatest Love of All: Family