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Children With Developmental Delays Twenty Years Later: Where Are They? How Are They?
Barbara K. Keogh, Lucinda P. Bernheimer, and Donald Guthrie University of California, Los Angeles, Center for Culture and Health

Abstract Data from parents and young adults were collected as part of a 20-year follow-up of children with developmental delays who had been identied at age 3 years. The young adults and their parents provided information through questionnaires and personal interviews. Findings documented a broad range of outcomes, with some young adults leading independent and productive lives, whereas the majority were un- or underemployed, living with and nancially dependent upon their families, and socially isolated. Three types of parentyoung adult relationships were identied. For both parents and young adults, IQ was signicantly and negatively related to perceived life satisfaction.

The transition from childhood to adulthood includes major developmental tasks: the shift in social relationships away from families of origin; the shift from school to work; the shift from economic dependence to economic independence; the shift toward assumption of responsibility for personal planning and actions; the development of sexual relationships, marriage, and parenting; and shifts in the use of leisure time (Clausen, 1968). Studies of young adults with disabilities suggest that the transition to adulthood is not easy and that too often many of these tasks are not realized (Carr, 1994; Gath, 1993; Haring & Lovett, 1990; Johnson, McGrew, Bloomberg, Bruininks, & Lin, 1997; Mitchell, 1999; OBrien, 2001; Richardson, Katz, & Koller, 1993; Richardson & Koller, 1992, 1996; Wagner & Blackorby, 1996). Two generalizations may be made about the existing literature. First, the follow-up studies tend to be focused on specic types of disabilities. Examples include Down syndrome (Carr, 1994; Gath, 1993), severe disabilities (Johnson et al., 1997), physical disabilities (Clark & Hirst, 1989), autism (Howlin, Mawhood, & Rutter, 2000), learning disabilities (Scuccimarra & Speece, 1990), and mental retardation (Edgerton, 1967; Edgerton & Bercovici, 1976; Richardson & Koller, 1996). American Association on Mental Retardation

Second, with few exceptions (see Bramston & Cummins, 1998; Zetlin & Turner, 1985), the voices of the young adults themselves are missing (Blacher, 2001). Information about the daily lives of these individuals their problems, satisfactions, expectations, and goals is usually gathered from others (e.g., teachers, parents, and other caregivers). The research literature also demonstrates that there is considerable variability in personal/social status among young adults with disabilities, but that many lead restricted lives, are un- or underemployed, continue to live with family members, and experience social isolation from their peers (Blackorby & Wagner, 1996; Carr, 1988; Gath, 1993; Haring & Lovett, 1990; Johnson et al., 1997). Anderson, Clarke, and Spain (1988) identied four major problems facing adolescents and young adults with physical disabilities: a high incidence of dissatisfaction with their social lives during and after the school years, a lack of control over their lives and insufcient information regarding services, limited choices in terms of employment, and lack of preparation for the realities of adult life. In the study reported here, we describe the young adult status of a particular subset of indi219

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viduals with developmental problems of unknown etiologies and with ambiguous diagnoses. We have examined their personalsocial adjustment, their relationships with their parents, and the nature of their daily experiences using standardized measures, parents reports, and the views of the young adults themselves. We were particularly interested in the relationship between cognitive level (operationalized as IQ) and their current status as young adults. In this paper we report the quantitative ndings. Project REACH (Research on the Early Abilities of Children With Handicaps) began over 20 years ago (Bernheimer & Keogh, 1986). The initial study sample of 44 preschool children (29 boys, 15 girls) was recruited from pediatricians, clinics, and intervention programs. The mean chronological age (CA) at entry to the study was 33.8 months (standard deviation [SD] 3.7, range 25 to 42). All of the children had identied delays and presented ambiguous developmental pictures, some with delays evident across ability areas, others with delay in single domains (e.g., language or motor delay). The majority had inconclusive diagnoses, and many received multiple labels. Children with known genetic conditions or histories of family abuse or neglect or whose mothers had histories of drug or alcohol use were not included. The children were European American; most were from two-parent homes. The primary language of all families was English. The children and their families were followedup when the children were ages 6 to 7, 9, 10, and 11 to 12 years. Parents provided further follow-up information when the adolescents were 17 to 18 years of age. Findings over time documented the stability of cognitive level for the group as a whole (Bernheimer & Keogh, 1988; Keogh & Bernheimer, 1987). The REACH children are now young adults. In this 20-year follow-up, we gathered complete data on 30 of the original preschool sample of 44. The majority of these young adults continue to live in southern California, but follow-up required visits to ve different states. Parents completed mailed questionnaires that provided information about the current status of the families and their young adults. Specic topics covered living arrangements, physical and emotional health, employment, social interactions and adjustment, and competencies and problems. The young adults and their parents (usually the mother) were interviewed individually using a semistructured format that covered many of the areas 220

of the young adults lives, their perceptions and views of their problems, the positive aspects of their lives, and their views of their quality of life. Our goal was to document long-term outcomes for these individuals, specically to determine where they are and how they are. In a subsequent report we will describe the developmental paths to these outcomes and assess the predictive power of early indicators of delay.

Method Young Adult Sample

The 20-year follow-up sample consisted of 30 young adults (18 males, 12 females). All were European American and English-speaking. Their mean CA was 21.5 and 22.67 years for males and females, respectively; their IQ was estimated based on the average of ve prior tests (at ages 3, 6 to 7, 9, 10, 11 to 12). The means, SDs, and ranges of IQs were 63.95 (20.25, 25 to 113) for the group as a whole, and 64.43 (17.90, 34 to 94) and 63.23 (24.19, 25 to 113) for males and females, respectively.

Measures
The REACH rosters from earlier data-collection points were reviewed, and letters were sent to all the families who could be located (N 33), inviting them to participate in this follow-up and explaining the procedures. Eleven of the original 44 had been lost to follow-up over the 20-year period. Three families did not respond to the invitation to participate. Thus, the nal sample consisted of 30 individuals and their families. There were no signicant differences between the two groups in cognitive level at entry; thus, the followup sample of 30 was considered representative of the original group. Parents were mailed a packet of materials containing a project-developed status questionnaire and three rating scales designed to assess many aspects of the young adults functioning, a human subjects protection statement, and a form indicating agreement to participate. All questionnaires and forms were returned in a REACH-provided enclosed stamped envelope. Following the return of the questionnaires, we interviewed the young adults and their parents individually. The methods and measures are described below. REACH Status Questionnaire for Parents. This questionnaire consists of 147 items tapping par American Association on Mental Retardation

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ents views of their young adults. Section One describes the domains of Marital Status, Current Living Arrangements, Educational History, and Employment. Parents perceptions of their young adults personal characteristics and adjustment were gathered in Section Two. The seven content domains covered (and the number of items) were: Physical Health (15); Independence/Autonomy (16); Emotional Problems (9); Personal Characteristics, including both positive and negative qualities (17); Risky Behaviors (7); Social Activities and Relationships (15); and high frequency problem behaviors (24). These domains were identied in prior assessments through the use of the Child Behavior Checklist (Achenbach, 1981). The internal consistency of the items in each of the seven domains was tested using Cronbachs alpha, yielding four internally consistent scales: Independence (.93), Behavior Problems (.73), Conduct Problems (.76), and Positive Attributes (.68). Independence involved daily living skills (e.g., uses telephone, prepares simple meals). Behavior Problems included items from the Child Behavior Checklist (Achenbach, 1981) considered by parents as high frequency problems when the children were ages 3 and 6 (e.g., demands attention, impulsive). The Conduct Problems and Positive Attributes scales were derived from the domain of Personal Characteristics. Conduct Problems described extreme but relatively low frequency problems, such as physical aggression and stealing, and Positive Attributes described personal styles, such as outgoing and affectionate. Subsequent quantitative analyses were based on the four internally consistent scales. A nal section focused on current parental concerns and expectations and concerns about the future. The Status Questionnaire also included a checklist of problems (e.g., physical, learning, emotional) that yielded a total problem score. Behavior and Emotional Scale (Epstein & Sharma, 1997). This instrument is a 52-item scale designed for parents to assess the strengths of children ages 5 to 19 years in ve areas: Interpersonal Strengths (accepts criticism, accepts responsibility for own actions), Family Involvement (interacts positively with parents, participates in family activities), Intrapersonal Strengths (is self-condent, is enthusiastic about life), Affective Strengths (asks for help, expresses affection for others), and School Functioning (pays attention in class). The scale yields a total strength quotient and ve factor scores. Its developers reported retest coef American Association on Mental Retardation

cients ranging from .85 to .99, rater agreement from .83 to .98, and an overall alpha of .98. Examination of the items conrmed that with the exception of those relating to school, they were appropriate for the young adults in this follow-up. The 9 school items were dropped, resulting in a total of 43 items tapping interpersonal strengths, family involvement, intrapersonal strengths, and affective strengths. Parents rated items on a 4point Likert-type scale from not at all like to very much like their young adult. The high degree of correlation among the subscales (values of r ranged from .49 to .91) suggests that, for this sample, the subscales were not independent, and, consequently, only the Strength Quotient was used in all analyses. Perceived Life Satisfaction Scales (Adelman, Taylor, & Nelson, 1989). The Perceived Life Satisfaction Scale was designed to gather self-reports from adolescents and young adults about their life satisfaction. The same items were used in the Perceived Life Satisfaction ScaleParents to gather parents views of their young adults, but the language was modied slightly to be appropriate for use by parents. Both forms contain 19 items aimed at determining how young adults and their parents perceive the young adults relationships at home, at school or work, and in recreational settings (e.g., how they get along with friends, the amount of control they have over their own lives). The Perceived Life Satisfaction Scale was administered verbally to the young adults as part of a personal interview, and the Perceived Life Satisfaction ScaleParents was included in the packet mailed to parents. Each item was rated on a 5point Likert scale, with a high score reecting satisfaction. The subscale scores yield a total life satisfaction score, which was used in this study. Adelman et al. (1989) reported testretest coefcients of .85. In subsequent work Bender (1997) reported internal consistency coefcients that ranged from .74 to .79 and testretest reliabilities, from .63 to .85. We note that the reliability coefcients based on the samples of Bender and Adelman et al. were not recalculated in the present study. Analysis of the parents and young adults responses in the present study indicated that the items were highly intercorrelated and, thus, did not form independent subscales. The alpha coefcient for the 19 items was .90 for parents and .81 for the young adults. Therefore, like the Behavior and Emotional Scale, subsequent analyses for the parents and young adults responses on 221

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this scale were based on total scores rather than on subscale scores. Parent and young adult interviews. Fourteen of the young adults were interviewed in the family home, usually with at least one parent or other caregiver in the home but not present for the interview. Six interviews were conducted in group homes, 3 in the young adults own homes, and 3 in the community (coffee shop, library). Four young adults could not be interviewed because of their language limitations. Most interviews were conducted by two UCLA-trained young adult interviewers, in all but 6 cases matched by gender to the young adult. Three of the interviews were conducted by one of the senior investigators (the second author). The Perceived Life Satisfaction Scale was administered verbally as part of the interview, and the young adults were then questioned about their daily lives, including their social activities. The interviews took from 40 minutes to 2 hours and were audiotaped and transcribed. Parents were interviewed at home by the second author. Twenty interviews were with the mother, 2 with the father, and 8 with both parents present. The interviews followed a semi-structured format and were designed to gather detailed information about the parents views of their young adult. The interviews allowed elaboration and conrmation of the information gathered from the mailed questionnaires completed by parents. They took from 1.5 to 3 hours and were audiotaped and transcribed. A pilot study with a sample of 10 different young adults with developmental delays and their parents conrmed that the measures and procedures could be used but that modications were sometimes necessary (e.g., a 3-point scale was substituted for the 5-point scale, instructions were expanded and claried, and more examples were added). These modications were incorporated into the nal protocol used with the follow-up REACH participants.

Scale, Perceived Life Satisfaction, and Perceived Life Satisfaction ScaleParents were summarized to describe aspects of personal strengths, relationships, and life satisfaction. Third, the ndings from the status and quantitative scales were combined. Finally, data from the interviews were used to create three outcome groups that reected the nature of the young adultparent relationships: independent, dependent, and interdependent. These procedures provide a picture of young adults with developmental delays in terms of their daily living, personal and social competencies, problems, and strengths as perceived by the young adults themselves and by their parents.

Status Questionnaire
Descriptive data gathered from parents, summarized in Table 1, provide a picture of the young

Table 1. Living, Education, and Employment Status by IQ Group (N 30)

Low IQ 0 10 3 0 5 2 0 10 0 0 0 0 3 3 1 3 Medium IQ 0 10 7 0 2 0 1 9 1 0 0 2 2 2 1 3 High IQ 2 8 6 1 0 0 3 3 1 3 3 4 0 0 0 6

Status Marital status Married Single Living arrangement Family home Relative home Group home Supported living Independent High school education Special education Special and general Resource room General education Employment Competitive Assisted Sheltered workshop Volunteer None

Results
Data were analyzed to address two major questions about these young adults: Where are they, and how are they? First, the parents reports from the Child Status Questionnaire were summarized to provide a picture of the young adults current living and personal conditions. Second, the results from the Behavior and Emotional 222

Note. There were 10 participants in each group. Low IQ 25 to 49; medium, 56 to 74; high, 75113. No employment in high IQ group includes 2 individuals attending college.

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adults status in areas of living, education, and work. Clearly, cognitive level was associated with their status as young adults. In terms of education, 22 (73%), 13 men and 9 women, received a regular high school diploma or a certicate of completion. The average age of leaving high school was 20. Three of the higher functioning young adults were enrolled in 2- or 4-year colleges, and 2 were still attending high school. Seventy percent of the group as a whole received instruction in academic subjects in programs that were separate from those of their peers without disabilities, but many were included in nonacademic aspects of school, such as physical education, art/music, and lunch/recess. Parents estimates of the young adults academic competencies were mixed, half considering their reading skill levels to be adequate or good, but only one third nding math skills at a comparable level. Over three fourths of the young adults were described as independent in self-help areas, but only one half were independent in navigating the larger community (e.g., grocery shopping, using public transportation). Five had drivers licenses. Table 2 is a summary of parents reports identifying problems relating to physical conditions, behavior, emotions, learning, speech/language, and social skills. Parents responded yes or no to a list of 9 problems. The average number of problems identied was 4.23 (SD 1.83, range 1 to 8). Only 5 of the young adults had two or fewer problems in the domains listed, and parents of 2 young adults reported 8 problems. Not surprising-

Table 2. Number of Parents Reporting Problems by Childs Gender (N 30)

Percentage of responses Problem Behavior Emotional Learning Medical Motivation Physical Social Speech/Language Retardation Malea 50 50 72 11 33 22 50 56 50 Femaleb 42 58 58 33 33 58 50 75 58

Note. Parents could choose more than one problem per child. a n 18. bn 12.

ly, the most frequent problems were emotional, learning, social, speech/language, and retardation. Examination of the kinds of emotional problems indicated that only two of nine possible items (compulsive and worries a lot) were checked by a third or more of the parents. Six parents reported that their young adult was withdrawn, and 5 reported frequent depression as a problem. Twenty-eight of the 30 parents (93%) considered their young adults to be in good or very good physical health, although one third received daily medications for physical conditions (e.g., allergies, seizures). Specic conditions reported for one third of the young adults were skin (n 9), vision (n 9), and weight problems (n 10); smaller numbers were reported to have allergies (n 5) and to be low in energy (n 7). Five had had major illnesses as young adults and 14 had been hospitalized. Parents reported signicantly more physical problems for the young women than for the young men. Nine parents considered their young adult difcult to manage, and 13 reported behavior problems at home. Only 1 individual had been suspended from school. According to parents reports, none of the 30 young adults had been involved with the juvenile or adult justice systems, been arrested, spent time in jail, used illegal drugs, or abused alcohol; only 2 used tobacco. One was reported to have engaged in inappropriate sexual behavior. Current and future concerns. One half of the parents expressed concerns about their young adults current emotional status, and over one third cited their lack of friends and social isolation. These concerns were also expressed by many parents in terms of the future, although concerns specically about future learning and speech and language problems decreased slightly. Five parents expected their young adult to be self-supporting, 10 expected that they would live independently, but only 4 parents whose young adult was single expected him or her to marry and have a family. In terms of gender, more parents were concerned about the behavior and learning problems of the young men than of the young women, but there were more concerns about the physical and emotional problems of the women than of the men. A more complete picture of these young adults emerged from analysis of the scales derived from the Child Status Questionnaire items tapping Independence, Behavior, Conduct, and Positive Attributes. Signicant differences between 223

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means for gender groups appeared only for Positive Attributes, favoring females, t 2.72, p .05. Correlations among the four scales and IQ are shown in Table 3 and suggest somewhat different relationships among the scales according to gender. There were signicant positive associations between IQ and Independence for the total group and for males and females and signicant negative associations between the Independence and the Behavior Scale for the group as a whole. With the exception of the Independence scale, the relationships between IQ and Behavior, Conduct, and Positive Attributes Scales were all negative for males, whereas two of the three were positive for females. Behavioral and Emotional Rating Scale. This scale provided an overall Strength Quotient. A comparison of mean scores for males and females for the Strength Quotient was not statistically signicant but favored the young women. Correlations of the Behavior and Emotional Scale Strength Quotient and other measures are found in Table 3. Differences between the magnitude of associations according to gender were nonsignicant (Fishers z), although they were generally higher for males. The values of r between IQ and the Behavior and Emotional Scale Strength Quotient were consistently nonsignicant, a not surprising nding given that this scale is focused on noncognitive attributes. There were, however, highly signicant associations between the Behavior and Emotional Scale and the REACH Positive Attributes Scale. Perceived Life Satisfaction Scales. These scales were completed by the young adults themselves and by their parents. The correlation between mean scores for the young adults and their parents for the group as a whole was a nonsignicant .28, but signicant for males, r .57, p .05. Means and SDs for the young adults responses on the Perceived Life Satisfaction Scale were 3.97 (.58) and for the parents responses, 3.24 (.62). Paired t tests contrasting young adults and parents scores showed a signicant difference, t 4.84, p .001, with the young adults rating themselves higher on life satisfaction than did their parents. Means and SDs based on parent and young adult scores for the males were 4.22 (.49) and 3.41 (.57), respectively, t 8.21, p .001. Differences in the means for parents and females were not statistically signicant. Males rated themselves higher than did fe224

males on the Perceived Life Satisfaction Scale. Means and SDs were 4.22 (.49) and 3.62 (43), respectively, two-sample t 3.00, p .006. Parents ratings of their young adults according to gender group did not differ signicantly. As shown in Table 3, there were signicant negative correlations between IQ and the ratings of perceived life satisfaction on both the Perceived Life Satisfaction Scalesself-report and parents. There were, however, some differences in the direction and magnitude of associations between Perceived Life Satisfaction Scale and Perceived Life Satisfaction ScaleParents ratings and REACH status domains according to gender. There were signicant differences between gender groups in the magnitude, Fishers z, and the direction of correlations between the Perceived Life Satisfaction Scale and Independence and Positive Attributes and between the Perceived Life Satisfaction ScaleParents and Independence. The associations for males were positive, the associations for females were negative. Correlations of the Perceived Life Satisfaction Scale and the Perceived Life Satisfaction ScaleParents and other measures are shown in Table 3. Interview ndings. The interview data conrmed the range of adjustments described in the quantitative scales and elaborated the quantitative ndings. The majority of parents viewed life as having gotten easier with the passage of time, but underscored their ongoing concerns about their young adults social isolation and about the limited number of appropriate programs and services. Parents with higher functioning children bemoaned the fact that even as young adults they continued to fall through the cracks. They were unable to nd employment that provided a living wage or that was sufciently challenging. These parents expressed dissatisfaction about the young adults lack of friends and social activities. They described them as being in limbo, as needing to get a life. Parents of lower functioning children were concerned about their childrens selfesteem and the lack of stimulating activities provided in most day programs. Rather surprisingly, few of the young adults expressed dissatisfaction with their lives. Those who did tended to be higher functioning cognitively, yet still living at home. In specic, they resented what they perceived as too much parent involvement in their lives, they complained of being bored, and of not having enough friends. In general, the lower functioning young adults American Association on Mental Retardation

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Table 3. Intercorrelations Among Scores by Measure and Gender (N 30)

Characteristic Conduct Problems Male Female Total Behavior Conduct Problems Problems Independence Positive Attributes IQ BERS SQa PPLS PLS

.42 .61* .48** .41 .19 .28

Independence Male .46 Female .57 Total .53** Positive Attributes Male Female Total IQ Male Female Total BERSa Male Female Total PPLSb Male Female Total PLSc Male Female Total

.21 .06 .18 .47* .31 .38* .29 .08 .10 .03 .10 .09 .03 .32 .08

.31 .05 .25 .40 .11 .15 .51* .28 .44* .24 .35 .29 .01 .46 .19 .44 .31 .34

.17 .31 .08 .58* .82*** .68*** .61** .13 .37* .29 .56 .10 .34 .59 .07 .35 .58 .49** .40 .35 .12 .73*** .79** .73*** .56* .06 .44* .57* .20 .01 .15 .12 .13 .03 .14 .07 .33 .74* .47* 1.51* .55* .40* .37 .42 .39* .46 .44 .47* .63 .03 .24 .17 .08 .04 .57* .36 .28 .10 .58 .35 .22 .69* .29

Total Problems Male .49* Female .40 Total .45*

Note. Differences in Ns are the result of missing data in parents responses. BERS males, n 18; PPLS n 18; PLS n 15. BERS females n 11; PPLS n 10; PLS n 11. BERS total sample. N 29, PPLS N 28; PLS N 26. a Behavior and Emotional Ratings Scale, Strength Quotient. bParents reports on the Perceived Life Satisfaction Scale. c Young adults reports on Perceived Life Satisfaction Scale. *p .05. **p .01. ***p .001.

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expressed more satisfaction with their lives than did their higher functioning peers. Findings from the Perceived Life Satisfaction Scales and the interviews suggested that there were real differences within the group in the nature of the relationships between the young adults and their parents. These differences were reminiscent of the earlier work of Zetlin and Turner (1985) with young adults who had disabilities. On the basis of ethnographic studies, those researchers described three types of relationships of young adults and their parents: dependent, independent, and interdependent. Zetlin and Turner reported that young adults in the dependent group relied on their parents to manage their daily lives. Both parents and young adults viewed the parental involvement as necessary and desirable. Young adults in the independent group were described as handling most of their daily lives without help, turning to their parents only in times of crisis. Those in the interdependent group were often in conict-ridden relationships with their parents. They sometimes asked for assistance and then resented parental attempts to exert control. Accordingly, the REACH young adults and their families were grouped following the Zetlin and Turner (1985) denitions. Interview data from parents and the young adults and eldnotes from the interview visits were used to place the young adults into one of three groups as follows: independent (n 5 males, 3 females); dependent (9 males, 6 females); and interdependent (4 males, 3 females). The initial coding was done by the second author. Interrater agreement between the

senior investigator and the project research associate was .97. We used ANOVAs to compare the three groups on the young adult measures. Results documented signicant differences among and between groups on the REACH status domains scores and on the Behavior and Emotional Scale. No signicant differences were found among groups on the Perceived Life Satisfaction Scale or Perceived Life Satisfaction ScaleParents. The statistically signicant comparisons are summarized in Table 4. Compared with the dependent group, not surprisingly, those in the independent group had signicantly higher parental ratings of independence and positive attributes, higher IQs and Behavior and Emotional Scale Strength Quotients, and signicantly lower ratings on parental views of conduct, behavior problems, and total problems. The members of the dependent group had a signicantly lower mean IQ than did individuals in both the independent and interdependent groups but a signicantly higher mean score than the interdependent group on positive attributes and the Behavior and Emotional Scale Strength Quotient. The interdependent and independent groups had similar IQs, but the interdependent group had signicantly higher numbers of behavior and conduct problems, and signicantly lower scores on positive attributes and the Behavior and Emotional Scale.

Major Findings and Discussion

The children in the present study are now young adults, and our goal was to describe where

Table 4. Comparison of Outcome Groups and Young Adult Status at Age 23 (N 30)
Outcome group Young adult status Mean IQ Conduct problems Positive attributes Independence Behavior problems Total problems BERSa Dependent 48.03a,b 1.33 2.53a 1.00a 8.80a 4.80a 102.00a Independent 83.41a 0.25a 2.37b 12.25a,b 3.87a,b 2.75a,b 108.00b Interdependent 75.82b 2.43a 1.00a,b 5.00b 7.71b 4.71b 87.57a,b F 25.94*** 4.74* 3.85* 11.12*** 7.10** 4.43* 4.46*

Note. Means having the same superscript differ signicantly on pair-wise post hoc tests. a Behavioral and Emotional Ratings Scale. *p .05. **p .01. ***p .001.

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they are and how they are. In earlier work we argued that nonspecic developmental delays identied in the preschool years signal the likelihood of future developmental and adjustment problems (Keogh, Bernheimer, Gallimore, & Weisner, 1998). That generalization was based on our studies of children and their families from preschool through the elementary school years into adolescence. Based on the group as a whole, our ndings in this 20-year follow-up provide further evidence of the long-term effects of nonspecic developmental delays identied early. The majority of the children did not outgrow their delays. As young adults they continued to have problems. Most lived with their families or were in group homes, were unemployed or underemployed, and had few friends. Over one half of the parents in this follow-up study reported that their young adult had emotional problems, an increase from their earlier reports during childhood and adolescence. Few had social lives expected of 22-year-olds. Rather, for many, their recreational and social interactions were limited to their families. The ndings of social isolation, few friendships, limited interpersonal interactions, and restricted lives were particularly compelling. These ndings are consistent with Howlin et al.s (2000) report of the status of 23and 24-year olds with autism and receptive language decits and Carrs (1994) work with young adults with Down syndrome. Despite the overall negative picture for the group as a whole, a striking nding was the wide range of differences within the group. Some had serious cognitive or emotional problems, but some were independent and productive, attending college or technical schools. Two were married and had started their own families. Also on a positive note, only a few of the young adults were reported to have serious physical problems. There was no known use of illegal drugs or alcohol abuse and no involvement with the juvenile or adult justice systems. There were few signicant differences in outcome measures according to gender, although the young women had signicantly more physical problems than did the men. The correlational ndings (Table 3) sometimes varied in magnitude and direction according to gender, although for the most part the differences did not reach statistical signicance. Not surprisingly, the associations between independence and IQ were strong for the total sample and for both gender groups, American Association on Mental Retardation

as were the values of r between positive attributes and the Behavior and Emotional Scale Strength Quotient. However, positive attributes was significantly and positively related only to the males self-views of life satisfaction (Perceived Life Satisfaction Scale) and the Behavior and Emotional Scale Strength Quotient, whereas associations were mostly negative and nonsignicant for the young women. Relationships were signicant between the young adults and their parents views of life satisfaction only for males. These inconsistent associations according to gender are puzzling and warrant further investigation. They may be a function of the small sample size, especially for the young women, or may reect real gender-related differences in how parents perceive cognitive limitations in their young adults. It is of interest to note that there were differences between the parents and young adults responses on the satisfaction with life measures (Personal Life Satisfaction Scale and Perceived Life Satisfaction ScaleParents). The value of r for the group as a whole was a nonsignicant .28, but a signicant .57 for males. With some exceptions, the young adults felt better about themselves and about their lives than did their parents. Kaufman (1999) and Edgerton (1967) have observed that parents and others tend to view the lives of individuals with disabilities through the lens of their own values and expectations for happiness or success, leading to perceptions that can differ from the individuals own views. This may be especially relevant for the low functioning young adults in group homes, many of whom expressed satisfaction with their daily lives. Their group living arrangements provided social and recreational opportunities, which they valued. One of the central questions in this study was the contribution of cognitive level to long-term outcomes. There was a broad range of cognitive ability within the group, although all had identied developmental delays in the preschool years. Intelligence quotient was clearly associated with a number of outcome indices in young adulthood. Individuals with higher IQs were more likely to live independently and to have better educational and employment outcomes than did their lower functioning peers. Not surprisingly, those attending college or technical schools were in the upper range of the IQ distribution. However, with the exception of Independence, individual differences in personal characteristics within the group were not highly corre227

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lated with cognitive level. Rather, individual differences in personal characteristics of these young adults were apparent across the full IQ range. Regardless of IQ, some were described by their parents as outgoing/friendly, warm/affectionate, and easy going, whereas others were seen as stubborn, noncommunicative, and manipulative. We speculate that these personal characteristics and styles, not just cognitive level, were important contributors to the young adults relationships with their families. Further analyses of parentyoung adult interactions support this inference. Following the work of Zetlin and Turner (1985), we characterized relationships in the present study as dependent, independent, and interdependent. As in the Zetlin and Turner study, those in the dependent group who lived at home relied on their parents to manage their daily lives. Both parents and young adults viewed the parents involvement as necessary and desirable. Some parents reported ongoing stresses related to the demands of daily living, and many of these young adults personal/social lives were limited to their families. The young adults in out-of-home placement had fewer contacts with their parents than those living at home, but regardless of living arrangements, most parents had positive relationships with their child, and the young adults expressed satisfaction with their lives. Project REACH young adults in the independent group handled most of their daily lives without help, turning to their parents only in times of crisis. Many were employed, either competitively or in sheltered situations, and most of them had friends. They were generally satised with themselves and with their lives. Parents of the young adults in the independent group took great pride in their childrens achievements. Several commented that they never expected them to come as far as they had. At the same time these parents stayed involved in their young adults lives, facilitating their independence where possible. Many of the young adults, in turn, expressed appreciation for their parents support. In contrast, those in the interdependent group were often in conict-ridden relationships with their parents, which were associated with ambivalence and negative affect and were troublesome for both. Many described their parents as overcontrolling and intrusive, yet depended on them for economic and personal needs. They sometimes asked for assistance, and then resented 228

parental attempts to exert control. They viewed their reliance on parents as stigmatizing and expressed lack of satisfaction with their circumstances. A number of these young adults had emotional and social problems, and some parents apparently felt compelled to supervise their young adults closely, efforts that were resented by the young adults themselves. In some cases, however, the parents chafed at having to be so involved with their children. One mothers report is illustrative: Hes in total denial. He has no clue that at 22 years old he should be out with his friends on the weekend, not going somewhere with his mom. . . . I am his lifeline. Comparisons among the three groups conrmed that IQ was signicantly different (lower) only for the dependent group. However, the independent and interdependent groups differed signicantly from each other on all other comparisons, with the differences clearly favoring the independent group. Of particular interest was the nding that the interdependent group was similar to the dependent group in mean number of conduct, behavior, and total problems and lower in personal attributes than both other groups. Although cognitive status was clearly related to the outcomes for these young adults, it was not the only factor in their adjustment and satisfaction with their lives and the lives of their families. Several measurement issues deserve brief comment. Findings in this follow-up study are clearly limited because of the small sample size. The magnitude of many correlations was strong, but because of the small sample size many of the coefcients did not reach statistical signicance, and thus could not be interpreted with condence. There were also concerns about the validity of the responses of some of the lower functioning young adults. The language and the modes of responses in interviews had been simplied, and the interviewers were trained to repeat and clarify as needed. Yet, there were instances when it was unclear whether the questions were really understood or if there was a positive response set. The Behavior and Emotional Scale and the Perceived Life Satisfaction Scale and Perceived Life Satisfaction ScaleParents were used because they cover content areas appropriate for use with young adults, have good psychometric properties, and have been used with populations comparable to the sample in this study. For the REACH group, the well-differentiated subscales were highly intercorrelated, limiting subscale analysis. This American Association on Mental Retardation

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may have resulted from effects of administrative modications. A more likely inference is that developmental delays of unknown etiology reect a global condition such that the delays are evidenced across the board and usually not limited to a specic domain, an inference consistent with earlier ndings when these young adults were children (Bernheimer & Keogh, 1986). In sum, our ndings conrm that signs of developmental delays in the preschool years signal the probability of continuing problems in the early adult years. The word probability is to be emphasized, however, because we found a wide range of outcomes: Some of the young adults in our study required full care; others lived independent, productive lives. These differences underscore the importance of caution in making long-term predictions about individual young children. Our ndings are consistent with those of Anderson et al. (1988), whose participants were young adults with physical disabilities. Many of the higher functioning REACH young adults expressed dissatisfaction with their social lives, feelings of lack of control, and limited choices in employment. Clearly, cognitive level operationalized as IQ was an important contributor to outcomes for young adults. It was not the only contributor of importance, however, because individual differences in personal characteristics were related to the nature of the interactions of these young adults and their families, in some cases leading to positive relationships, in others resulting in conict and stress. The young adults with marginal IQs were less satised with their lives than were both their higher and lower functioning peers, and many had stressful relationships with their parents. These ndings are consistent with the notion that ambiguous problem conditions are particularly troublesome to understand and accept. Taken as a whole our ndings suggest that the need for services for individuals with developmental delays do not end in childhood and adolescence. Rather our ndings underscore the need for continuing services for these individuals and their families.

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