The Developmental Approach to Common Special

The Developmental Approach to Common Special-Needs Syndromes

If we look for developmental capabilities and individual differences within the most common special-needs syndromes we find that we can think about children with these labels in different ways. Instead of seeing them as similar, requiring similar programs of treatment, we see them as unique and can tailor treatment programs to their individual developmental needs. Let us look at the implications of this approach for a few of the more common syndromes.

Autism, Autistic Spectrum, and Pervasive Developmental Disorders

For reasons not yet entirely clear (but that may go beyond improved, early identification services), programs that serve infants, young children, and their families report an increasing number of children with severe relationship and communication problems. Very often these children seemed to be making reasonable progress until 18 or 24 months of age. Parents recall that their child enjoyed hugging and cuddling and began purposeful gesturing on time. Family videos often document these observations. Between the ages of 12 and 15 months, the preverbal, gestural system of communication began to stop developing. The toddler did not, for example, grab her father's hand, lead him to the kitchen, and vocalize or gesture for a certain food. At the same time, the child began showing, (or intensifying) existing over-sensitivity or became less reactive to certain sounds or kinds of touch. The child no longer seemed to understand even simple words or gestures, and language stopped developing. Gradually parents noticed that the child was increasingly withdrawn, aimless, and was more often engaging in repetitive behavior.

Many of these behaviors, however, do not fully fit the original description of autism coined by Leo Kanner, a child psychiatrist. According to Kanner, the autistic child's "outstanding fundamental disorder" is the "inability to relate...from the beginning of life...an extreme aloneness that...disregards, ignores, shuts out anything...from the outside." [Kanner, 1943]. These behaviors are systematized in the American Psychiatric Association's Diagnostic and Statistical Manual (DSM-IV) in the category of pervasive developmental disorder (P.D.D.). P.D.D. has a number of subtypes, including autistic disorder (the more classic and severe form) and pervasive developmental disorder not otherwise specified (P.D.D.NOS), a more general type diagnosed when there is a basic impairment in relating and communicating but all formal criteria for autistic disorder are not met.

As more children are diagnosed with P.D.D. at younger ages, we see clinical features that challenge the existing conceptual framework. Children's patterns of relating, communicating, and expressing emotions seem to fall along a continuum rather than into one distinct type. Because of the lack of more appropriate diagnostic categories, clinicians use the diagnosis of P.D.D.NOS for many children who have various combinations of social, language, and cognitive dysfunctions, even when they show varying degrees of social relatedness. Most parents, however, are aware that autism and P.D.D.NOS are part of the same broad P.D.D. category.

For many children, according to our recent review of 200 cases [Greenspan & Wieder, 1997], the relationship problem is not clearly in evidence in the first year of life, as thought by Kanner, but appears in the second and third years, in connection with difficulties with processing sensations. In contrast to other studies, we find that the majority of children first develop clear symptoms in the second and third years of life. Furthermore, each child has her own unique profile for processing sensations. These profiles vary in sensory reactivity (e.g., tactile, auditory, and visual), sensory processing (e.g., auditory-verbal and visual-spatial), and muscle tone and motor planning or sequencing. Also, the assumption that children with P.D.D. tend to remain relatively unrelated to others, rigid, mechanical, and idiosyncratic (as stated in DSM-IV) is not supported by our recent clinical experience.

With early diagnosis and a comprehensive, integrated, and developmental, relationship-based treatment approach, many children originally diagnosed with P.D.D. are learning to relate to others with warmth, empathy, and emotional flexibility [Greenspan & Wieder, 1997]. We have worked with a number of children diagnosed with autism or P.D.D.NOS between the ages of 18 and 30 months, who, now older, are fully communicative (using complex sentences adaptively), creative, warm, loving, and joyful. They attend regular schools, are mastering early academic tasks, enjoy friendships, and are especially adept at imaginative play. We have introduced the term multisystem developmental disorder to characterize children who have communication problems and are perseverative but can relate or have the potential for relating with joy and warmth. The capacity to become comfortable with intimacy and dependency and to experience joy often appears to be attainable early in the treatment program. In addition, cognitive potential cannot be explored until interactive experiences are routine.

The traditional pessimistic prognosis for P.D.D. is based on experience with children whose treatment programs tended to be mechanical and structured rather than based on individual differences, relationships, affect, and emotional cueing. Approaches that do not pull the child into spontaneous, joyful relationship patterns may intensify, rather than remediate, the difficulty. We have observed (even with older children with P.D.D.-type patterns) that as more spontaneous affect based on emotionally robust gestural or verbal interactions get going, perseveration and idiosyncratic behavior decrease and relatedness increases.

The existence of many types of relationship and communication problems, significant individual differences among children, and greater potential for intellectual and emotional growth than formerly thought forces us to reconsider our long-held assumptions about P.D.D.. It is especially important that we reconsider the notion of a fixed biological deficit that prevents relating to others and experiencing joy, happiness, and, eventually, empathy. Evidence suggests that biologic processing deficits can be dealt with by the child in different ways, and certain types of intervention can enhance adaptive outcomes, including joy and creativity.

Mental Retardation

Mental retardation is usually diagnosed when a child has a cognitive delay or deficit that is more than two standard deviations off the expected average or, in other words, a score on the standard IQ test of 75 or below. Traditionally, children with mental retardation were thought to have across-the-board lags, that is, to lag equally in language, cognition, motor abilities, auditory processing, and visual-spatial processing. We assessed many children diagnosed with mental retardation; their individual profiles included both strengths and weaknesses in auditory processing, visual-spatial processing, muscle tone, and motor planning

We also found that one deficit often kept other areas from developing properly. Sometimes severe motor impairments mask stronger abilities in other areas. For instance, a child who could move only her tongue was believed to have very severe cognitive delays and no communication ability at all. Once we taught her to use movements of her tongue to indicate yes and no, we revealed greater potential for deliberate, two-way communication. In a fairly short time, she was using her tongue to indicate her wishes and intentions-abilities that clinicians had previously assumed were beyond her capability. Even subtle motor sequencing or planning problems may undermine a child's ability to communicate (for example, to put together a sequence of gestures) and therefore may lead to a decrease in the types of interactions likely to foster intellectual or emotional growth.

Children with low muscle tone or severe motor planning challenges often cannot participate well in formal testing, which can result in an inaccurate picture of their cognitive potential. Their abilities may look more uniformly low when, in fact, they are uneven.

All this does not mean that all children diagnosed with mental retardation have enormous potential, but it does mean that some do, and many have a good degree of undeveloped potential. Our challenge is to look at each child's unique strengths and weaknesses. As long as we believe that a child's skills are uniform, we deny her the chance to maximize growth.

Other disorders, including fragile X syndrome, Down syndrome and other genetic syndromes, fetal alcohol syndrome, mother's substance abuse during pregnancy, and various types of cognitive or perceptual deficits, evidence a variety of attentional and regulatory problems. Although many of these syndromes involve cognitive, motor, and processing problems, they also are best viewed in terms of individual differences (i.e., how they are manifested in specific difficulties).

Many excellent programs are available to help children with deficits in hearing or vision deal with their specific challenges. But these children also share challenges with children who have regulatory difficulties, and they require intervention to emphasize their stronger senses, developmentally-based interactions, and special perceptual motor experiences as a basis for learning, relating, communicating, and thinking [Greenspan & Wieder, 1998].

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