8 months ago



Teddy 105 took the

Teddy 105 took the second, and currently more common, approach: He delayed giving the diagnosis as long as he could since the clinical presentation was not “classic.” He did not know there is no such thing as “classic” autism anymore. The enormous variation in clinical presentation in autism, the fact that the clinical picture changes over time, and the realization that there are other forms of ASD that share some features with autism but may look different is perhaps the most important advance in the science of ASD over the last two decades. Most parents notice something not quite right with their child’s development within the first two years of life. Often, however, they do not receive a diagnosis until five or six years of age. Making a diagnosis earlier is difficult, but we are learning more and more about the very early signs of the disorder. As this new information percolates down from the researchers to front-line clinicians, one can only hope that these delays in receiving a diagnosis can be eliminated. Perhaps the most important finding is that the early diagnosis relies heavily on an assessment of social–communication skills in young children. Toddlers with ASD infrequently show the range of repetitive stereotyped behaviors (rocking, rituals, resistance to change, spinning wheels, etc.) more commonly seen in older children. Too often, the diagnosis of AS does not come until even later, at eight or nine years of age. Family doctors, not yet aware of this new information, try to reassure parents that their initial concerns about social and communication skills in infancy and toddlerhood are the results of too much worrying, of having a first child, or of sheer lack of knowledge about child development. This reluctance to give a diagnosis early on leads to significant delays in getting children into early intervention programs. Some children who start these programs at five or six years of age have less prospect of improvement than if they could start receiving therapy much earlier. There are few more frustrating experiences for parents than to be told first they are too worried about their child’s lack of speech and then, two years later, that he has autism but now the waiting lists are too long to receive timely interventions. Clinicians have tended to overlook the fact that we’ve had reports of good outcome among some children with autism for decades. Kanner titled one of his last papers “How Far Can Autistic Children Go in Social Adaptation?” In this 1972 paper, he reported on the “best outcomes” among the first ninety-six children with autism seen at his clinic. He identified eleven (out of ninety-six) who he felt “ functioned gainfully in society.” Indeed, the case studies show remarkable improve-

106 A MIND APART ment but still demonstrate difficulties in intimate adult relationships. The enormous variation in outcome is perhaps the most striking thing about the adult development of individuals with ASDs. Some (our data would suggest that roughly twenty percent of those with AS and ten percent of those with autism) do very well and score in the “average” range on assessments of social and communication skills and have few, if any, autistic symptoms. Perhaps another fifteen to twenty percent do well enough to live on their own with some support. However, the new generation of children who received early intervention has not yet reached adulthood, so even these estimates may need to be revised upward. The fact is the majority of children with autism and AS will get better. Each year tends to be better, and less stressful, than the last. The most difficult years are the early ones, when the diagnosis is first given and when all that effort must go into early intervention. But after a while, things settle down and the children follow their own developmental timetable. Different skills will develop at their own rate; sometimes a step backward will be taken, sometimes two steps forward will bring about immense relief. Sometimes, what looks like regression is, in fact, the response to a new challenge that the child is not quite ready to meet but with a little support will be able to accomplish in time. Where any individual child will end up on the developmental pathway is unknown; no one can predict the final outcome. The accomplishments of a child with ASD will look disappointing only when viewed from the outside, when compared to everybody else’s yardstick. “He is not meeting our expectations, I am afraid,” Justin’s teacher once told his parents, who immediately became extremely discouraged with his progress. But it’s much better to look at outcome from the perspective of the child’s world. What obstacles did he have to overcome to get this far? What challenges did he meet that we can only imagine? The triumphs of a child with ASD are often private, like persisting in going to school in spite of the constant teasing and bullying, like trying to strike up a conversation in the lunch room with another child, like sharing time on the computer with a brother for the first time. Many of these triumphs are known only to parents, but they are no less real for all that. In typical children’s families, these accomplishments are often taken for granted. Parents of children with ASD can take nothing for granted; each step toward “typical development” is a victory and sticks out from the daily flow of life’s events like a beacon of shining light. The