A mother brings her two year old son, Evan, for an evaluation through the Massachusetts Early Intervention Program(EI). She and her husband are at their wits end, fighting constantly over this very challenging child. An older sister is neglected in the face of the intense demands of of her brother. He screams in the face of any transition, cannot tolerate loud noises, eats only a very narrow range of foods. He has frequent meltdowns and is difficult to comfort physically, resisting efforts of his parents to hold him. When he goes to playgroup, he runs around in circles rather than interact with the other children.
A study published in the June issue of Pediatrics, Early Autism Spectrum Disorder Diagnoses in Massachusetts, shows that more young children in Massachusetts are receiving treatment for autism spectrum disorders, with the proportion of those 3 and younger being treated rising by 66% from 2001 to 2005. A summary of the study states "Researchers did not determine whether the increase was because of improved awareness, better diagnosis or an increase in the prevalence of the disorder, but said a combination of factors was likely."
There is yet another reason for the increase in diagnosis, perhaps even the major reason . If the above child is diagnosed with an autism spectrum disorder, he will receive a whole range of services through EI including developmental specialists coming into the home on a regular basis to help the family make sense of and manage Evan's difficulties. On the other hand, if he does not get the diagnosis, this family, which is most certainly struggling, may get ZERO. Nothing. No help at all.
Evan may have some significant biologically based vulnerabilities, with a low frustration tolerance, inflexibility and number of sensory processing difficulties. But if he and his family can get the support they need, he may learn to manage these vulnerabilities. He may even be able to transform them in to an asset, becoming a musician or a professional chef.
Perhaps the rise in diagnosis is not because of a rise in autism, but because of limited access to mental health and community based support services for children like Evan and their families. The health insurance industry and managed care have contributed to this problem through prohibitively complex administrative costs for private practitioners. Many of the best mental health practitioners are therefore not on insurance plans and quality services may be inaccessible to families who most need them. Early Intervention is a superb program that is available to anyone in need. But the catch is that a child usually needs to have a diagnosis to be eligible.
Autism is a highly charged subject. Parents of children who are severely impaired understandably bristle to questions about the legitimacy of the diagnosis. I suspect that what is now called autism represents a very wide range of difficulties that we will come to learn are actually a number of different and distinct problems. While early identification and intervention is essential. I believe there is a need for caution regarding diagnosis.
Parents who receive a label of a major psychiatric diagnosis for their child inevitably go through a period of mourning. The child they had is gone and has been replaced by a child with a “disorder.” As D. W.Winnicott, pediatrician turned psychoanalyst, so wisely observed, a child develops a healthy sense of self when the people who care for him recognize the meaning of his behavior, rather than substituting their own adult meaning. Parents often begin to regard behaviors as “symptoms” of the “disorder.” For a very young child whose development is unfolding, his “true self”(again in Winnicott's words) might be lost in the face of such a frightening label.
It is my hope that we can move from an emphasis on diagnosis and labeling to an emphasis on prevention. We need to ask not “what is the disorder?” but rather, “what is the experience of this particular child and family?” and “what can we do to set things in a better direction?” This current situation, where a diagnosis is needed in order to get help, is a dangerous example of the tail wagging the dog.