The hidden hurts of high-functioning autism
June 16, 2016
We all have dreams for our child the day we bring him or her home from the hospital. We hope they will grow up to accomplish great things, live a happy life and be a positive influence in the world around them.
When that child has a developmental disability, the script of those dreams is rewritten; the disability becomes the ghostwriter of the lives of all those under that roof. The story of each family is unique. There are points we share in common, yet each family and every family member is affected in a unique way that only he or she can understand. You can make no assumptions that you understand the struggle and the pain a family goes through when dealing with a child who has a developmental disorder.
When my wife was carrying our second son, she said something was different than our first. She said, “This one is not happy.” As a guy I was confused. I came home from work the first day after he was born, anticipating that my wife had a wonderful day enjoying our new son. Instead, I was met by a woman near to tears. “He is so difficult, not like our older son,” she said. Her instincts proved to be accurate as he failed to socialize with others and mumbled monosyllables when others his age were chattering away.
I will never forget the day my son put two words together into his first sentence.
“I’m sad,” he said.
“Do you mean you are sleepy or tired?” I asked. “No, I’m sad,” was his reply. Words we were to hear or see many times in his life throughout childhood and into adulthood.
He did not play with other kids and did not play like other kids. He had problems with his speech then and still does today. His older brother and later his younger brother and sister were often frustrated by him. His interpretation of words seemed too rigid. Our language with multiple meanings and figures of speech was like a wall preventing him to understand the world and its communications to him.
When my son was three, a friend from our church in California told us about a program called Child Find. When we moved to Maryland, my wife contacted them, and so began a long series of meetings and tests that went on throughout his school career.
Kindergarten was difficult with his lack of participation, covering his ears with too much noise, and hiding under the table.
We were fortunate that throughout school he always had one friend – usually a girl. However, when the time came to have a birthday party for him, the invitation list was much shorter than for his brothers. Often his brothers’ friends were called on.
When you first meet him, you think he is different or has an odd sense of humor. People mistake his speech problems and language as an accent from Eastern Europe, only later they revise their opinion of him and think he is odd. Then they start to think he is more than odd, even creepy; it is never long before a friendship sours.
We felt we were blamed for his poor performance and bad grades and his attention problems. We applied for help and asked for evaluations, but his condition did not hit the radar of needs. We filled out forms and surveys and argued that he had a disability and needed services.
While struggling with the schools, we also struggled with our doctor to try to get a diagnosis. We were referred to specialists and psychiatrists. We tried medication.
Gradually the school began to give him more and more help. One day when he was in elementary school, we were at an Individualized Education Program (IEP) meeting with the school counselor and special education department.
The school psychiatrist said, “I have the training and am qualified to make the determination that he has autism spectrum disorder, and we are going to provide him services.” I openly broke down and wept. I must have wept for a few minutes or more. There was only one other time my wife had seen me cry – when my brother died.
Autism is a spectrum disorder, but there is one thing that is not on any spectrum; it is the pain you feel for your child. And your family.
That disability which one has becomes the definition of the whole family. Family resources are diverted to the disabled one. Time that could be spent nurturing the other children or the marriage is spent taking the child to therapy, seeing doctors, meeting school officials. We missed work for appointments and because of school calls. Siblings look at the attention the disabled one gets and feel neglected, or jealous, not realizing that all the trips to doctors and therapist are not fun.
It is also a barrier to those around you.
If you have a child with you when you go shopping and that child is blind or in a wheelchair, the people around you are sympathetic and want to help. But if you child has Asperger’s and they are being themselves in public, people say, “What is wrong with that parent to let the child act like that?” or “They need to take a parenting course!”
You see what they are thinking in their looks and frowns. Other parents do not reach out to you, your child, or their siblings. Play dates stop being offered. My son’s older brother was very gregarious when he was younger, but questions like, “What is wrong with your brother?” began to be asked.
The family begins to turn inward.
I always felt that because I spent time on (not necessarily with) my child with special needs, I did not find energy for his siblings. I feel guilty that his younger brother and sister felt frustrated and slighted. I feel it is my fault for spending so much energy on their brother.
Having people over ourselves and making friends got harder and harder as he got older. We felt we were always explaining his behavior. Maybe we were excusing it or maybe we had become so needy that we drove potential friends away.
The church is not who we went to for help. We were the ones who had to teach and explain and apologize. When we were new to one church, as I was picking him up from Cubbies at the end of the evening, my wife was told that at their church they taught children to obey. Later people would reach out to him and then they would be hurt when he rejected them. However, there were some very precious people, Sunday school teachers and AWANA leaders and parents of our other children’s friends, who reached out to us and to him despite the rejection or insult or indifference they might meet.
I consider us fortunate since most families facing such disabilities have had bad experiences. You may not be asked to leave your church but you can be ignored to the door. I do not know which is worse.
Our son is an adult now and still lives at home. He has a part-time job. As we near retirement, we often wonder about his future. Our greatest comfort is knowing God Who already knows the future. And like all the days before, He will be there, too.
Without grace where would I be? God gave this disabled young man to us as a gift and blessing. Through him we have learned about God’s grace. We would not have sought the Lord as we do now, we would not understand other people’s pain like we do now, and we would not have compassion like we do now. My walk would be very shallow, and my attitude would be legalistic and arrogant. I have seen the face of God in my son more often than anywhere else.
And for that, I am grateful.
Adron Dozat is facility support services specialist for the Mid-Atlantic Baptist Network.