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Autism: Moving Beyond the Label

Two-year-old Ben had just received the diagnosis of pervasive developmental disorder (PDD) and his parents, Sarah and Mark, were understandably upset.  They brought Ben in for further evaluation.  At first he sat in his mother’s lap, his back to the therapist, clinging to her tightly.  But over the course of 15 minutes he gradually turned around.  Furtively he watched the therapist, turning away quickly whenever the therapist looked at him.  As his looks grew longer the therapist began to talk softly to him, calling his name and making funny faces.  After about five minutes he smiled tentatively back.  A few minutes later Ben giggled at the therapist’s funny face and then shyly turned to Sarah and gave her a hug and one of the most joyful smiles a two-year-old could give.  Mark and Sarah and Ben’s therapist talked for a few more minutes, during which Ben looked curiously around the office.  About a half hour into the session he climbed off his mother’s lap, took her hand, and pulled.  As she followed him, he toddled unsteadily toward the door (his sense of balance seemed uncertain), banged insistently on it, and made emphatic guttural noises.  He was ready to leave!  Patiently, Sarah explained that they had to stay a little longer.  At this Ben threw himself on the floor and banged repetitively with his fists.  When Mark tried to pick him up he threw a full-scale tantrum, kicking and screaming in frustration.  Ten minutes of firm holding and soothing by his mom and dad helped quiet him down.  Ben spent the rest of the session cuddled on his mother’s lap, refusing to look anyone in the eye.

Ben had many features often described as autistic: he seemed to have a language delay and possible cognitive challenges; his motor system seemed underdeveloped; and he engaged in repetitive motor behavior.  But he lacked the central feature of autism: unrelatedness.  According to the classic definition of autism, children are permanently unable to relate to others.  They have no investment in the human world – they find a person no different from a chair.   Although the definition of autism has changed over the years to include relative deficits in relatedness, a deficit in the capacity for intimacy and joy remains a central feature.  Certainly this part of the definition did not apply to Ben.  He was warm and cuddly and joyful with his mother, he turned to her for reassurance, he smiled and giggled at this therapist.  Ben was quite capable of relating – although in a more limited way than most children his age. During the next few observation sessions, Ben vacillated between giving his mom joyful hugs, negotiating with gestures for a cookie and a quick exit out the door, and repetitively lining up toys and touching the windowsill in a self-absorbed state.

The therapist told Ben’s parents that he didn’t believe their son was autistic.  Rather, he appeared to have a variety of sensory, processing and motor problems, which interfered with how he took in, processed, and responded to information from the world.  His problems were treatable, and an intensive program would help him with his processing challenges and would help him learn to relate and communicate more fully.

On receiving the PDD diagnosis, Ben’s parents had rushed out and bought many books on that disorder, all of which painted a dismal picture of the future.  They had rebelled: “Not our son!  He’ll do better than that!”  But despite their love, despite their anger, despite their determination not to let the diagnosis affect the way they cared for their little boy, subtle changes crept into their relationship with him.  They no longer expected him to look at them every time they called his name; they no longer expected him to smile when they picked him up.  A voice inside them said, “He won’t respond.  Don’t expect him to respond; he has PDD.”  Little by little, even though they were fighting the diagnosis, they were coming to accept the limitations it implied.

Now that devastating label had been lifted.  Their son wasn’t limited to what was expected for a child diagnosed with PDD.  He had a variety of sensory, motor and processing challenges that might gradually improve.  Although they understood that a long road lay ahead, their expectations rose.  Most important, they began looking for more emotional responses.  They became more animated and responsive themselves.  Ben’s therapist helped them establish an intensive program of therapy, which included occupational and speech therapists who worked on Ben’s biological challenges and a therapist who helped Mark and Sarah work on tailoring their interactions with Ben to his needs.  Within the first six months of treatment Ben began to make significant improvements.  He could engage joyfully with the important people in his life for several minutes at a time; he sought his parents out for closeness more often and was less repetitive and self-absorbed.  He initiated more facial expressions and gestures and responded to his parents’ simple questions with appropriate gestures; and he had developed a speaking vocabulary of four or five words and was imitating new sounds more readily.  He was beginning to climb the developmental ladder.

Ben is not alone.  Many children today are given labels that are misleading.  Instead of pinpointing a child’s unique strengths and challenges, they obscure them and unwittingly demoralize and creative negative expectations on the part of parents, therapists and teachers.

The Problem With Labels

Current diagnostic categories generally summarize a child’s symptoms, but often don’t tell us enough about the processing underlying a child’s challenges – how the child takes in, processes, and responds to information from the world.  These three aspects of biology lie at the heart of the child’s ability to think, feel, and interact.  Children with the same label may be more different than they are alike and children with different labels may be more similar than they are different in terms of their underlying profiles.

A child may be diagnosed with autism, for example, because he has difficulty relating to others, when his underlying problems are actually more specific and involve difficulty processing auditory information and a severe overreactivity to sound.  As a result of these challenges the speech of the people around him is confusing and assaulting, making him physically and emotionally uncomfortable.  To protect himself, the child withdraws and becomes aimless, earning the diagnosis of autism.  Another child with similar biological challenges may earn a different label.  If her auditory reactivity and processing problems are somewhat less severe, it may be difficult for her to take in speech and decode it, but the sound of speech itself is not overwhelming.  This child may relate warmly to others but react slowly to or be confused by instructions.  Thus she may remain close to others but avoid interactions that foster cognitive growth.  If this child also has some motor planning or movement problems, she may receive the labels of “cognitive delay” or “mild mental retardation.”

By grouping children into diagnostic categories that are too general, we may obscure the underlying biological processing differences related to their problems and gain no clues about how to treat them.  If, however, we look at how each child takes in, processes, and responds to information from the world, we can pinpoint underlying aspects of the child’s problems and develop a treatment plan to address them.

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