Second Thoughts on Autism
Autism confounds us. In a Feb 6th editorial in this paper, I wrote that New Hampshire has failed to proactively address the public health crisis of autism and fund intensive early treatment. There's more to the story.
Legislators and policy makers are not alone in ignoring the needs of autistic children. They are just the reluctant mouthpieces of a confused culture unwilling to thoughtfully engage with this disturbing disorder.
Autism, in itself, is no longer a shameful secret. Parents, philanthropists, and researchers have made it front-page news. Last December, President Bush signed the Combating Autism Act that authorizes more federal support for early identification, research, and treatment. But even in the spotlight, autism remains obscure. Our fear of the syndrome distorts our understanding of it and paralyzes our progress in finding meaningful remedies.
We even debate autism's increase. For example, In Unstrange Minds, Roy Grinker, an anthropologist and father of an autistic daughter, argues that the rising numbers reflect not an actual change in incidence, but only broader diagnostic criteria, more sensitive epidemiological studies, and diagnoses designed to procure the best services. It is true that changing diagnostic criteria account for a two-fold increase in the reported number of autistic children. And some schools are coding more children as autistic and correspondingly fewer as mentally retarded. But epidemiologists rely on their own assessments of children, not on school records. They report a 10-fold surge over the last 20 years. Can this explosion be explained by methodological factors alone?
We also do not want to see autism as psychological. In 1980, American psychiatry declared that autism was no longer a mental illness, but a developmental disorder. We then gladly dismissed old-fashioned theories that autism arose from early attachment problems. It became a disorder of pre- and post-natal brain development. Researchers believed that autism was one of the most heritable disorders and eagerly searched for the culprit genes. However, this quest has proven quixotic. Over 100 genes have been studied, but positive results often do not replicate. Increasingly, researchers acknowledge that autism has manifold causes. Multiple genes may make a child vulnerable, but they do not destine him to become autistic.
Disappointed in the failure of simple genetic models and alarmed over autism's rise, we have begun to blame the physical environment. Concerns that mercury in vaccinations triggers autism have been largely discredited. But what about other chemicals that increasingly permeate our planet? We know these can confuse the body's hormone systems. Might they also disrupt brain development? A $5.9 million federally-funded study is now exploring how genes and environmental toxins contribute to autism.
But one environmental factor--a factor with which we have lost touch--is ignored: the autistic child's experience with caregivers. Even though we know that early social interactions influence brain development, we disqualify this knowledge from the search for autism's elusive causes. We have tacitly agreed not to offend. Some research is taboo. Science sometimes panders to political pressures.
How do these pressures affect treatment choices? Since parents are told that autism is a developmental disability, they seek help from early intervention and special education. Most treatments focus on the individual child, but no one agrees which works best. Of all the autism treatments, applied behavior analysis is the only one backed by rigorous research; many claim this makes it the unquestioned winner. Others consider this approach mechanistic and superficial, masking with rote skills deeper troubles that are never understood. Research also supports developmental treatments that emphasize play, language, cognition, and social relations. Some programs, such as Stanley Greenspan's Floortime, teach parents to engage the withdrawn child.
Parents also face a dizzying array of alternative treatments. Should they try sensory integration? Facilitated communication? What about the gluten-free diet, vitamin supplements, chelation--a process that draws heavy metals out of the body--or hyperboric oxygen treatment to heal an inflamed brain? Which remedy might nourish the child's stunted mind?
This might surprise Americans, but psychological treatments do exist--and help. In Europe, infant-parent psychotherapies help parents understand the obstacles both they and their baby place in the way of emotional contact. In Israel, intensive family treatment addresses attachment problems in children developing autism. Both clinical and research reports document the effectiveness of these treatments, but all of this is uncongenial to the American mind.
Individual psychotherapy has also helped autistic children. In the 1960s, the English child psychotherapist Frances Tustin developed an effective treatment based on her understanding of the child's emotional struggles. She used this successfully until her death in 1994. Tustin did not subscribe to the theory of refrigerator mothers; she understood the mother's love for her child and her despair over the child's remoteness. And she recognized that biological sensitivities can disrupt attachment. Her finest contribution, though, was to describe in practical, earthy prose, the autistic child's early anxieties and explain symptoms as attempts to manage these terrors.
According to Tustin, autism is, chiefly and above all, a destruction of links. At some catastrophic moment, or moments, the child loses contact with his caregiver and retreats into a shell of withdrawal to avoid both a recurrence and an awareness of this catastrophe. The parents may never know this has happened, but only see the heartbreaking aftermath: a child who behaves as though they and others don't exist. By this withdrawal, his only protection, the child severs human links.
Why does this happen? The child has become stimulated beyond his endurance. By what? Perhaps by frustration of his yearnings for psychological or physical contact at critical moments, or by sensory overstimulation, or even by pressures in the parents which they themselves don't understand. For these or other reasons, the child recoils and feels this recoiling itself as a disaster which he must forever after avoid. To ease this unbearable pain of aloneness, the child even shears off memories of pleasures he has enjoyed with his parents.
Increasingly, the child turns to his body for comfort. Now shut off from other humans, he never discovers other minds. His speech goes silent, his fantasy life goes dark, and his enthusiasm for people withers before it lives. He becomes mindblind.
In the forty years since Tustin made her initial discoveries, we have become more and more like the autistic child in our response to his plight. We too deny connections that, if we dared recognize, would leave us disturbed and overwhelmed.
First, we sever links between parts of the child. Advances in molecular biology allow us to study the autistic child in smaller and smaller bits, but we still have no coherent theory of what underlies the aberrant brain development. We don't know how disturbances in the child's digestive and auto-immune systems meaningfully relate to autism. In turn, treatments address the child in pieces. They often ignore the child's growth-seeking drive that exists amidst the autism and they may inadvertently contribute to his overstimulation.
We also deny links between the child's and parents' minds. Yes, the child has a biology. Toxins may even have changed his brain. But his brain is also formed and transformed by his parents' minds, as he forms and transforms theirs. Despite the power of these mutual effects, treatments often ignore the parent-child relationship. Likewise, they overlook the parent's private sorrow over an unresponsive child, or their hidden worry that they've caused the child's withdrawal. We rarely understand the parents' heartbreak or its meaning to them, or learn how they endure it.
Third, we ignore links between past, present, and future. We are reluctant to consider how the infant's experiences, even prenatally, have shaped his development. We divert our attention from the connections between early treatment and recovery, and its opposite, negligence and failure. Likewise, we deny the future cost of these choices to the health care system and the state. We do not see that it is in our economic, not to mention ethical and humane, interest to act early and decisively.
Finally, we deny a possible link between the age of autism and the great cultural earthquake which has shivered apart our society. Are these children reflecting our response to changes that have occurred too rapidly for the human organism to accommodate? What is the impact on our own nervous systems of crowding, a globalized shrinking world, and the cyber explosion that frustrates our need for solitude and perpetually showers our psyches with stimulation? What are the toxins we are seeking? Are they chemicals that hover in the air, float on the water, or lurk in the vaccinations we inject into our children? Or perhaps they are a miasma of psychological breakdown products from a diseased culture. The thought is terrifying.
Of course, there are many different paths to autism. Each autistic child has a unique story, and careful thinking about these stories might help us. Deep thinking could force us to see connections we've ignored. These precious links—between brains and minds, parents and children, past and future, culture and disease—make us human. Our children need us to keep these links alive.
Miriam Voran, Ph.D. has a psychotherapy practice in Lebanon, NH.