Just Our Martha
A year ago, in the spring of 2004, that my wife and I found out that our daughter, Martha, had autism.
For Christen and me, as it would be for any parents, hearing that our child had a neurological disorder with no known cure was devastating. Suddenly, it seemed that all our hopes and dreams for her had been stolen away. We had been told that our child was always going to be different, to be somehow less than other children. We wondered if Martha would be able to go to college, to have an independent life, to appreciate and reciprocate the love we had for her, to have friends, to find a life partner. We asked the age-old question of those stricken by something unexpected: Why us?
But as devastating as it was, Martha’s diagnosis was not a shock. Seemingly typical in many ways, Martha gave us clues that something was awry before she turned 1.
As an infant, play seemed to be difficult for Martha, rather than a wondrous experience. Later, we saw that toys easily frustrated her, as if she didn’t understand what they were supposed to do. She would turn over toy cars and trains and just spin their wheels. Sometimes she would flip through the pages of her board books repeatedly while making a low-pitched whining sound, oblivious to everything else, not ceasing until my wife or I physically took the books away. Attempts to engage her in directed play would result in tantrums.
More concerning to us was the absence of the most basic forms of communication. Despite our repeated attempts to model different actions, such as clapping and waving, Martha made no effort to imitate us, or to make meaningful gestures. She did not point to objects out of her reach. Her babbling was inconsistent, and rudimentary words like “mama” and “no” came and went quickly. She made little eye contact and responded to her name infrequently. At 18 months she had no words, and her only real form of communication was whining.
Friends and relatives told us not to worry. Martha was just a little behind, they said. She would soon come into her own. But they didn’t see what Christen and I saw each day and could not ignore. Nor could we ignore what it possibly meant. The rare times that word “autism” came up in conversation, we quickly rejected it. But it hovered over us. I searched for information to refute our fears, to indicate that Martha was just experiencing some developmental delays. But I only found more to confirm our suspicions.
Our pediatrician responded to our concerns and pointed us in the right direction, sending us first to an early-intervention program and eventually to a specialist for a full developmental evaluation. Just two months before Martha’s second birthday, we were told she had autism. Our sadness, however, has been tempered by knowing that having Martha diagnosed at such a young age was the best thing that we could have done for her.
Stories like ours are becoming fairly familiar. Martha is just one of thousands of children who are being diagnosed with an Autism Spectrum Disorder (ASD), the umbrella phrase that defines variations of the disorder. Once only a blip on the public consciousness, autism is now hard to ignore. The Centers for Disease Control estimate that between 1 in 500 and 1 in 166 children have an ASD, meaning that more than 24,000 children will be diagnosed in 2005.
For many, however, the movie Rain Man has shaped their monolithic perception of autism, with its portrayal of a man locked in a bizarre world of repetitive speech, compulsive mannerisms and activities, and savant talents. In reality, autism takes on many shapes and forms; this variety is why autism is now classified as a spectrum disorder. (Plus, the occurrence of savant abilities in people with autism is only about 10 percent.) The common threads in ASD are deficits in the area of communication and social interaction, yet a wide variety of ability exists within these two areas. Some children with autism (as many as 40 percent) do not talk; others have little functional language. Still others have a wide vocabulary, but have difficulty communicating with other individuals. They may repeat words or phrases or focus solely on one subject.
Socially, some children on the spectrum prefer solitary activity, while others enjoy being around people but may have difficulty maintaining basic relationships because they can’t understand the nuances of social interaction (like facial expressions) or view things from another person’s perspective.
Other attributes of the disorder are more conspicuous. Arm flapping or rocking back and forth, to the exclusion of other activities and people, are self-stimulatory behaviors. For many on the spectrum, transitions from one activity to another, or breaks in routine, lead to intense outbursts of frustration and anxiety.
No specific cause for autism is known. Though there’s no research proof, great debate surrounds the issue of whether childhood immunizations can cause autism. Christen and I don’t reject the argument, but we’re not really proponents of it, either. Ultimately, it’s just not where our focus is — we’re more concerned with how we can help Martha now and make her future better. Also, we never saw in Martha the post-immunization regression some parents describe. If we had, perhaps we’d be more concerned. Without denigrating parents who believe in the link, I do wonder if such a belief serves as an outlet for anger over what has happened to one’s child.
For my family, the initial devastation of the diagnosis has faded. Martha has made tremendous progress in the year since she was diagnosed. It has been a time of transition, of steps forward and backward, of highs and lows. It’s included a move from Massachusetts to Minnesota (where Christen’s mother and sisters live) and time taken off from career paths.
Finding the appropriate treatment for Martha has been the main focus of our lives. The doctor who diagnosed Martha told us that she would need at least 25 hours a week of Applied Behavioral Analysis, a therapy that focuses on building fundamental skills. Though we wanted to get help for Martha as soon as we could, we were unwilling to commit our daughter to that much therapy. Instead, we enrolled her in a special-ed preschool program and obtained private speech and occupational therapists for her. We also started using a parent-directed therapy called Relationship Development Intervention that addresses the social impairments associated with autism. Since then we have also added 10 hours a week of ABA therapy.
Though it makes for a busy schedule, this combination of special classes and private therapy has helped improve Martha’s social and communication skills. She’s much better at play now, and her eye contact is light years from what it was. But her biggest breakthrough has come within the last few months, when she finally began to talk. After a year of wondering whether Martha would ever become verbal, Christen and I were overjoyed to finally hear her little voice, and to see the joy she takes in making herself heard and understood.
Martha is a blessing to us in so many ways, despite her deficits. With her red hair, her infectious giggle and engaging smile, Martha brings us so much joy. In many ways she is like most children her age. She loves to go to the playground, and could easily stay there for hours. A daredevil since the moment she could walk, she will quickly forget her mother and father while she scales anything that looks even remotely climbable. She lives for Elmo and the Teletubbies. And she says “bye-bye” to just about everything — animate and inanimate (“bye-bye, daddy…bye-bye, Elmo…bye-bye, car”).
Perhaps because she was diagnosed on the mild end of the spectrum, Martha has many strengths. She’s extremely affectionate and loving, with both her parents and her extended family. She adapts well to new and different situations. And, more importantly, she enjoys engaging with people (especially her parents, teachers, and therapists) in play and other social activities, though she does not often interact with other children on her own.
Of course, Martha is different, too. She can easily get locked into repetitive routines and tune out the rest of the world. Frustration comes very easily to her, and can lead to tantrums. These tantrums are not only more intense than the average 3-year-old’s but also painful reminders to us of Martha’s deficits. What starts out as a fun family outing can spiral quickly into tears and screaming if Martha is bothered by something, and there have been many times when Christen and I have had to extricate ourselves from a playground or pool, red-faced, Martha looking like she’s been possessed. It’s at those moments when we feel angry — angry that Martha’s different, that other parents have no clue how difficult it is. We look at their seemingly perfect children and wonder, again, why it had to happen to our child.
Like most parents, we have good days and bad days with our child. There are times when we’re far from model parents, when we find our patience does have its limits. The only thing we can do is to try not to let the bad days throw us into despair.
We know challenges lie ahead. Progress will be made, but it may be slower than we want. Difficult behaviors will appear.
But all that is in the future. As one of Martha’s therapists constantly reminds us, it’s a marathon and not a sprint. For now, we’re trying to pace ourselves.
When Martha was diagnosed, there was a feeling that from that point onward autism would dominate our lives. Aside from the time devoted to Martha’s various classes and therapy sessions, Christen and I spend a great deal of time reading about autism, attending parent groups, and incorporating therapeutic activities into our daily routine.
But we don’t look at Martha as our autistic child. She is just our Martha — unbearably cute, sweet, funny, quirky, often difficult, always endearing. And we will gladly let autism define our lives, if it means it does not have to define hers.