10 months ago



Sophie 181 ried a bag of

Sophie 181 ried a bag of sticks and feathers for her to amuse herself with, but instead she preferred to explore the room. She would pick up the toys from the box and look at them briefly but then quickly put them down and turn to something else. She communicated little during our time together but was not eager to leave. I learned from Greg and Marianne that she spoke about six words, but largely had her immediate needs met by placing her parents’ hand on a desired object, pointing at things close by, or simply protesting. In most circumstances her parents had to guess what she wanted. She had poor eye contact, smiled only when going for a ride in the taxi to the treatment center, and generally played by herself. She would not ask for help in getting things or to play. She would not share her joy in her play activities, and if her mother was hurt or crying, instead of offering comfort, she would become mad and frustrated. She sometimes sat on her parents’ knee during the interview but would not cuddle with them and related only to a few workers who came to the house to work with her. She had no interest in other children at the child development center and would not join in the games. She loved to stare at things. Sophie would bring her eyes right up to a dog’s eyes, or to someone wearing glasses or an eye patch. She loved to turn objects like feathers and straws around in her hands. She carried around twigs, Lego blocks, and tree branches. She liked to run in circles and to rock in the car and in front of the TV. She could also be quite aggressive, although I never saw this during our time together. Sophie was suspended from kindergarten because of this behavior. Apparently she lasted about four days before the teacher and principal started phoning Marianne asking for help. Sometimes they would call as early as 9:15, even before Marianne returned home from dropping her off at school. Her mother was often afraid to leave the house in case she got a call from the teacher saying she had to come and pick her up because she had been aggressive or had hit another child. Eventually Marianne took to not answering the phone so she could take a shower in the morning. More recently, Sophie would have terrible temper tantrums in which she would wail for hours if she were denied an object to hold in her hand, sometimes bite herself, scratch her parents, throw things around the room. These screams felt like a constant reprimand to her parents, a confirmation of their failure to nurture this handicapped little girl. There was clearly more to Sophie’s development than simple developmental delay caused by early deprivation. Sophie was not able to demonstrate the social skills usually seen even in a six-month-old child.

182 A MIND APART She lacked the motivation to communicate, and her interests were severely restricted, intense, and highly sensory in nature. In addition to the delays caused by the deprivation, I believed she had autism, although it was difficult to sort out which delays in development were due to autism and which due to deprivation. Who knows what neurological damage was caused by the first three years of her life spent in the orphanage? Is it possible for extreme forms of deprivation to cause autism, perhaps in some children who have a genetic risk for the disorder? There are now reports of children from Romanian orphanages presenting with types of autism. It’s not inconceivable that in the context of genetic vulnerability the biological insults brought about by lack of food and human touch could be one of the factors causing autism in this child. This is not to say that autism can be caused in the typical circumstance by “bad parenting”; what Sophie experienced was extreme deprivation, malnutrition, and lack of touch, factors known to cause changes in the brain and to influence social behavior in laboratory animals. One cannot generalize from Sophie’s history to the vast majority of children with autism in developed countries. I took a deep breath and tried to explain all this to Greg and Marianne. What I wanted to say was that Sophie did not have autism and that their act of compassion and bravery would be rewarded by a healthy child who would eventually “catch up” if they continued to stimulate and support her. But I knew this was probably not true; the autism was an added burden over and above the early deprivation. Life was going to be even more difficult than they had bargained for during that conversation over the phone. I expected them to be devastated by the news, at the prospect that there would be a limit to Sophie’s recovery. In fact, to my surprise, they were relieved. So often my apprehension at communicating bad news turns out to be misguided. Marianne and Greg reasoned that at least Sophie’s lack of progress was not due to their failure to love and nurture her. A heavy weight had been lifted. Now at least there was a reason Sophie pushed them away and refused to enter their world. It had a name, and they could get on with the next phase of their lives, dealing with the autism. * * * I have followed Sophie’s progress with interest over the years. Here was an opportunity, I thought, to learn about how parents come to terms with having a child with ASD. The process was all the more dra-

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