One of the most heart-wrenching and life-changing experiences that I have had thus far has been the experience of being the parent of an autistic child. It is indeed a very special challenge. But, as any one of my relatives or close friends might tell you, I love a challenge. I am a risk taker especially when I believe that in taking the risk some very good purpose will be served. And so, I thank you for indulging me in this opportunity.
What is autism? According to researchers, autism is a disorder of neural development that is characterized by impaired social interaction and communication, and by restricted and repetitive behavior. These signs all begin before a child is three years old. Autism involves many parts of the brain. How this occurs is not well understood. The two other autism spectrum disorders are Asperger Syndrome, which does not include the same delays in cognitive development and language as autism, and Pervasive Developmental Disorder which becomes the diagnosis when the full criteria for autism or Asperger Syndrome are not met.
Parents usually notice signs of autism in the first two years of their child’s life. The signs usually develop gradually, but some autistic children develop normally and later regress. Although early behavioral or cognitive intervention can help autistic children gain self-care, social and communication skills, there is no known cure. Not many children with autism live independently after reaching adulthood although there are exceptions. An autistic culture has developed with some researchers seeking a cure while others believe that autism should be tolerated as a difference and not treated as a disorder.
Putting the definition of autism aside, what does this all mean to the parents of an autistic child? It is a fallacy to believe that having a definition of autism somehow prepares you to deal with life with a child who is severely or even mildly affected by autism. Permit me to share with you my family’s journey with autism thus far.
Our beautiful son, Zwannah, came into our lives nineteen years ago on June 2, 1990 at Howard General Hospital in Columbia, Maryland. It was an especially traumatic birth because intensive labor seemed to go on and on and on. I remember my husband, Nat, pleading with the doctor and nurses to do something. The doctors responded by looking at the monitors that I was hooked up to, shrugging their shoulders, and saying, “There is no fetal distress. The baby is fine. It will just be a little while.” I had a history of relatively long labors and therefore the prediction was that after 12-16 hours I would produce a normal, healthy baby in a routine vaginal delivery. Nat was persistent. He said to the doctors, “But the mother is distressed and I am distressed!” Finally, just as they were debating performing a Caesarean section, out popped Zwannah’s head swiftly followed by his rosy body. He was kicking robustly and wailing loudly as only a healthy nine pound baby would. The doctors were vindicated and Nat and I immediately forgot everything other than the burst of joy that expectant parents experience when a much anticipated child is finally born.
Everything in our lives was perfect. We both had great careers. We had handsome children. We lived in a beautiful house in an American suburban paradise called Columbia. We were young Liberians who had managed to escape the horrors of civil unrest in our native land and re-establish ourselves in the great United States. We were living the American dream. Until one day when Nat remarked to me, “Have you noticed that Zwannah behaves very strangely?”
At the time, Zwannah, our youngest son, was two years old. Before that auspicious day, he had been developing normally as far as we could tell. He could walk. He babbled what sounded like words. I especially remember that he said the word, “light.” He gave hugs and blew kisses and did all the most endearing things that baby boys the world over do. But Nat insisted that lately Zwannah had taken to staring into space blankly and not responding when you entered the room and called to him. He no longer said “light” when you turned on the light.
I became defensive. What good mother wouldn’t? “There is nothing wrong with my baby.” But I began to perform little tests of my own. My greatest fear was that he might be deaf, but that was easily over-ruled. I knew he was not speaking, but I consoled myself with the fact that his older brother was definitely slow to talk and even ended up in speech therapy before becoming the world’s most talkative five-year-old with an unrivaled vocabulary.
As we took Zwannah from one pediatrician to the next, they all admitted the abnormality. They conducted tests and drew no conclusions. There was simply no explanation. I am extremely lucky that both of my siblings are physicians. My sister is an internist and my brother is a psychiatrist. Once Nat and I enlisted their help, they began to read a lot about child development and reported back to us. We had Zwannah tested for everything they could recommend. Still no answers.
The true challenge came when Zwannah turned three years of age and had to begin preschool. We prided ourselves in exposing our children to the best at the earliest age possible. We took him to the Montessori preschool that his older brother had attended, but Zwannah was simply not fitting in with the other kids. We tried other preschools. I silently blamed the inadequacies of the teachers. Why must every child fit into a cookie cutter? Why couldn’t they simply accept my baby?
The moment of truth finally came when Zwannah’s preschool teacher, a very loving and gentle older woman with many years of teaching preschoolers, said that she needed to speak with me. In the most gentle manner she said to me, “He is not normal. There is a range of what happens with children. I’ve taught many children. This is very different. You must get him tested.”
From that moment, I began to prepare myself emotionally. Zwannah’s principal referred us to a group of child psychologists in the area. We made an appointment and went through a series of interviews which required us to allow them to interact with Zwannah alone. What they eventually told us was devastating to my husband. But somehow, for me, it was not. At least there was finally some explanation. Nat and I have noted with profound gratitude that whenever he would despair about Zwannah, I seemed to be strong and confident. And whenever, I was at my wits’ end, Nat somehow became the rock.
The head psychologist received Nat and me in her office that weekday morning and proceeded to clinically outline the test results. Zwannah’s development was decidedly abnormal. He could not speak. He was unable to interact socially appropriately. In a sense, we could not reach him. He was locked within himself. There was no cure and no known cause although there were many theories. The psychologists recommended massive speech, behavior and occupational therapy.
We learned that the public schools were the best option for Zwannah because states are required by law to educate all children no matter their handicap. In American public schools, there are mechanisms to develop Individualized Education Plans (IEPs) tailored to the specific needs of each child. Obviously, certain school districts provide superior services, but children have the option to be transported to the best public school to meet their needs. The legal obligation in America helps, but interacting with the public schools can sometimes be very frustrating. My experience has been that the special education teachers are extraordinary in their ability to determine what children need to do the best that they can. The challenge becomes getting the school boards to direct the funds to get the resources that are needed. Children like Zwannah need a dedicated aid, someone trained (and not just a warm body) to work one-on-one with them. These services do not come cheaply.
As Zwannah developed, ever so slowly, he would exhibit many behaviors common to children with autism. He was extremely anxious in crowded, public, or unfamiliar places. He would panic and become hysterical if there was a loud, sustained noise such as an alarm or police siren. He had a ritual of hopping back and forth, winding one arm around and around in a swinging pattern for long periods of time. When he finally could say a few words, he was very repetitive. He would not engage in a conversation but would echo what you said to him. Eventually, Zwannah learned scripts of things to say in a conversation, but, even today, conversations beyond the very basics continue to be a real challenge for him.
Over the years, Zwannah has exhibited many impulsive behaviors and, at various periods in his life, he has been unable to sit still or even sleep at night without medication. The most alarming habits that Zwannah has exhibited are his habits of self-mutilation and his tendency to disappear. He has been known to cut or burn himself and proceed to pick at the wound until it becomes infected. He has had to have surgery to remove a foreign object which he shoved into his ear. Zwannah has picked at and removed his toenails using a pin without appearing to feel the pain of it.
As for disappearing, at one moment he would be standing next to you and at the next he was nowhere to be found. I have had to warn teachers and caregivers that I left him with of this dangerous tendency. We have called the police on more than one occasion in frantic search of Zwannah. Whenever Zwannah would suddenly go missing in the mall or in the airport or even in Target, I learned to look for him near video games, basketball hoops, and anything related to computers. Those of you who have not known a fleeing child can only imagine how difficult it is to keep track of children who like to flee. All you have to do is turn your head and your child could be gone in an instant. This makes it exhausting to take such children anywhere beyond the confines of home.
Our son, I feel, has been exposed to the best of both the Western world and the more traditional African society. Even while living in America, Zwannah was nurtured within an extended family. Research has documented that parents of children with special needs are more likely to divorce than couples that do not have such children. This means that as high as the divorce rate is, it is even higher within families of children with autism. I feel so fortunate that far from tearing our family apart, Zwannah has brought us closer. I remember pledging to our older children that we would try to give them as normal a life as possible but that things might be harder because of Zwannah’s special needs. Once, when we took a family vacation, each one of us took turns being responsible for Zwannah. In that way, if it was my day off, I could completely relax as one of the older children, his grandmother, or his father, watched out for Zwannah. In the end, no one bore the burden alone.
In 1999 when we decided to move back to Africa to live, my greatest anxiety was for Zwannah. I first settled in Abidgan with our two youngest children while Nat worked in Liberia. I was told that there were schools with special education programs but nothing specifically for autism. In addition, everything was in French. Zwannah was by then nine years old and he had just begun to communicate a little bit in English. Teaching him French was out of the question.
We were fortunate to learn of an American special education teacher living in Abidgan. She had her regular job at an Ivorian school, but she agreed to work privately with Zwannah at home on a part-time basis. She devised an elaborate system of pictures on cards and set out to expand Zwannah’s vocabulary and pre-reading skills. She also began basic math skills. I shall never forget Mrs. Juhen.
Later, when we moved to Liberia, I was able to take Mrs. Juhen’s personalized education plan for Zwannah with me to Liberia. We found a Liberian woman, a Catholic nun, Ms. Carvey, and she is the one that I credit with getting Zwannah to actually read. It was an exciting time as Zwannah improved significantly. I am sure that this was the result of intensive one-to- one instruction.
Unfortunately, there were no social outlets for Zwannah in Liberia. As he grew older and puberty began to set in, his behavior became extremely difficult to manage. For the first time in his life, Zwannah actually became aggressive. We ended up bringing him back to the U.S. in order to be re-evaluated and placed on anti-psychotic medication.
Over the years, we have been through a range of medications to control Zwannah’s impulsive, repetitive and disruptive behaviors. All of the medications come with side effects. We are in a constant struggle to balance the improved behavior with the damaging side effects. My rule is to medicate only if it becomes absolutely necessary and, trust me, we have had those moments.
Those of us who come from traditional African families must be very grateful. In our Liberian culture, even in the U.S. we were blessed to have a close-knit extended family. I cannot imagine what we would have done if we did not have my mother, Nat’s parents, our siblings, our great extended family of cousins, aunts, and uncles, and our family friends who we’ve known for generations. Liberians love family and we could not have made it without our loving family. Wherever we as Africans go, I sincerely pray that we do not lose that sense of the village raising the children. For me, this is the most wonderful thing about being an African.
We are so fortunate that Zwannah, in spite of all of his challenges, is extremely independent in terms of his self-care. And, he has largely outgrown the mutilating habit and the tendency to disappear. Wherever Zwannah has lived or attended school, he has been amazingly popular with students, teachers, and administrators. He loves to sing, dance, and give hugs, pounds and high fives. He is devoted to video games and old television programs like the Flintstones, Addams Family and Family Ties. Now, our greatest challenge is to insure that Zwannah masters the life skills that will allow him to be as independent as possible in the future. We are so grateful to his teachers in the autism program at Theodore Roosevelt High School for the incredible work they are doing. Zwannah has continued to make huge strides since we moved to Washington, D.C. just over a year ago.
I feel that it is essential that we provide help for children with autism and their families. Raising all children is extremely challenging. Raising children with special needs can become completely overwhelming without positive intervention and support. There are many lessons that families worldwide have learned about living with autism and these lessons must be shared globally. There are even lessons that people in Africa may be able to share with the most technologically advanced countries in the world; however, the right mechanisms must be in place to fully take advantage of the exchange of information.
In my opinion, educating the general public about autism has been the single largest benefit to families living with autism in America. We no longer get angry stares when our children, who look completely normal, behave impulsively and completely abnormally. More often today, people smile sympathetically and even offer suggestions instead of disapproving frowns when an autistic child has a public outburst. In America, people in general are more aware of autism.
I would like to conclude by saying that traditional African cultures may understand the value of the extended family, but they are also extremely superstitious especially with regard to mental abnormalities. Children with autism living in Africa may be thought to be possessed of evil spirits or bad omens. The public needs to be better educated about autism. African schools need teachers trained in special education. Families need strategies for coping. They need to learn more about what helps children with autism live better lives. In short, resource centers are a critical first step.
Every great religion in the world teaches love. That is what has sustained my family. The greatest lesson that we have learned in being Zwannah’s parents is that it is not Zwannah who needs healing. Rather it is we, the parents, who need to adjust our attitudes and expectations. As long as Zwannah is happy, we should be happy with him.
In the future, we need more research to better understand autism and we need more dollars focused on autism capacity-building in the developing world, but above all, we need love and understanding.
|Dr. Dawn Cooper Barnes
Liberia Renaissance Foundation
Managing Director and Advocate for Autism Awareness and Capacity-Building in Liberia
The views expressed in this paper are those of the author(s) and do not necessarily represent the views of the NLM Family Foundation.