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J Autism Dev Disord (2013) 43:168–178

DOI 10.1007/s10803-012-1562-4

ORIGINAL PAPER

Autism Severity and Qualities of Parent–Child Relations

Nicole M. Beurkens • Jessica A. Hobson •

R. Peter Hobson

Published online: 7 June 2012

� Springer Science+Business Media, LLC 2012

Abstract The aim of this study was to examine how

severity of autism affects children’s interactions (related-

ness) and relationships with their parents. Participants were

25 parent–child dyads that included offspring who were

children with autism aged from 4 to 14 years. The severity

of the children’s autism was assessed using the calibrated

severity metric of the Autism Diagnostic Observation

Schedule (Gotham et al. in J Autism Dev Disord

39:693–705, 2009). Parent–child dyads were videotaped in

10-min semi-structured play interactions, and qualities of

interpersonal relatedness were rated with the Dyadic

Coding Scales (Humber and Moss in Am J Orthopsychiatr

75(1):128–141, 2005). Quality of relationships between

parents and children were evaluated with a parent self-

report measure, the Parent Child Relationship Inventory

(Gerard in Parent–Child Relationship Inventory (PCRI)

manual. WPS, Los Angeles, 1994). Multivariate regression

This work was conducted as part of the clinical doctorate of the frst

author (NB) carried out at Walden University, and is an adaptation of

her dissertation. Portions of the work were presented at the

International Meeting for Autism Research (Imfar) in San Diego, CA,

May 2011.

N. M. Beurkens (&) Horizons Developmental Resource Center, 3120 68th Street SE,

Caledonia, MI 49316, USA

e-mail: [email protected]

J. A. Hobson � R. P. Hobson Institute of Child Health, University Collge London, 30 Guilford

Street, London WC1N 1 EH, UK

e-mail: [email protected]

R. P. Hobson

e-mail: [email protected]

J. A. Hobson � R. P. Hobson Tavistock Clinic, 120 Belsize Lane, London NW3 5BA, UK

analysis revealed that severity of autism was inversely

related to patterns of parent–child interaction but not to

reported quality of parent–child relationship. We consider

the implications for thinking about relatedness and rela-

tionships among children with autism, and opportunities

for intervention.

Keywords Parent–child interaction � Autism severity � Communication � Relationship-based treatment � Attachment

Introduction

When Kanner (1943) frst described the syndrome of aut-

ism, he considered the condition to be a biologically based

impairment in affective contact between the children and

other people. Here he was highlighting a feature of the

children’s relatedness towards others, how they related to

strangers (such as Kanner himself) as well as to people

with whom they might have an enduring relationship. At

the same time, and less centrally, Kanner’s descriptions

included reference to the children’s relationships with

others, for instance as refected in their seemingly dimin-

ished responses to separation from their parents.

The contrast between relatedness and relationships is

one between qualities of moment-to-moment social inter-

action and interpersonal engagement, and enduring modes

of interpersonal relation (whether of attachment, friend-

ship, rivalry, hostility or affection) that have specifcity to

the individuals involved. Relationships are dynamic sys-

tems that evolve over time, and are characterized by the

endurance and the strength of connectedness between

individuals (Reis et al. 2000). In the case of relationships

between children and parents, they alter as developmental

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169 J Autism Dev Disord (2013) 43:168–178

needs change (Bugental 2000; Harach and Kuczynski 2005;

Laursen and Bukowski 1997). This is notwithstanding that

relationships implicate particular qualities of relatedness

between or among the people involved in those relation-

ships, and that interactions can be viewed in the context of

overall relationships (Loulis and Kuczynski 1997). Among

many forms of diffculty that can affect parent–child rela-

tionships, stresses in parenting an atypically developing

child can create negative feelings toward the child, alter

parent expectations, and lead to a reduced sense of parent-

ing competence (Van Hooste and Maes 2003).

One aim of the present paper is to tease out this dis-

tinction between relatedness and relationships as applied to

relations between children with autism and their parents.

We investigate how the severity of children’s autism is

related to independent measures of child-parent interaction

(relatedness) on the one hand, and child-parent relationship

on the other. Although the study was not intended to

examine the determinants of patterns of interaction and

relationship within the child-parent system, our aim was to

investigate how closely each of these correspond with

children’s severity of autism as assessed using the cali-

brated severity metric of the Autism Diagnostic Observa-

tion Schedule (Gotham et al. 2009; Lord et al. 2002). The

fndings may be relevant for understanding the dynamics of

social engagement, and perhaps highlight the potential for

fostering optimal development among children with autism.

At the outset, it is critical to appreciate the bidirec-

tionality of parent–child relations (Bell 1968; DeMol

and Buysse 2008; Kuczynski et al. 2003; Sameroff and

Chandler 1975). Just as children’s characteristics affect

their relations with parents so too, interpersonal interac-

tions and relationships with adults affect children’s devel-

opment and functioning (Sameroff 2009). Over time, each

participant and the relationship as a whole undergo trans-

formation (Fogel 2009). It would seem inevitable that a

child’s autism will infuence parent–child interactions. As

among typically developing and developmentally delayed

populations, there are also likely to be forms of parental

behaviour that encourage or impede the children’s devel-

opment (Siller and Sigman 2002).

Relatedness, Relationships, and Autism

There is limited evidence concerning the relation between

autism severity and parent–child interactions and/or rela-

tionships, although these are clearly matters of importance

(Markus et al. 2000). On the level of relatedness, the more

verbal and cognitively able the child, the more caregivers

tend to engage in mutual play and positive feedback,

whereas parents of children with autism who have poorer

joint attention and fewer expressive language skills spend

more time keeping their child physically contained and

oriented to tasks (Kasari et al. 1988). When toddlers with

autism show higher levels of externalising problems, their

mothers use signifcantly more active/physical coping

strategies and report greater levels of parenting stress

(Gulsrud et al. 2010). Gulsrud et al. (2010) reported how,

with an intervention targeting joint attention, mother–child

emotional co-regulation improved.

From a complementary perspective, parents may infuence

the development of their children with autism. Siller and

Sigman (2002, 2008) studied the extent to which a caregiver’s

behaviour was synchronized with a child’s focus of attention

and ongoing activity. The researchers videotaped interactions

between caregivers and children with autism, and reported a

correlation between the synchronization of such relations and

children’s subsequent joint attention and language develop-

ment. Ruble et al. (2008) reported that parent responsiveness

was associated with the children’s propensity to initiate social

interactions with adults, and in this case parent interactions

were not associated with the child’s adaptive behavior or

cognitive level, nor with child and parent demographics (but

see Spiker et al. 2002). Yet in all such research, one needs to

be very cautious about interpreting correlations in terms of

cause-effect relations.

On the level of relationships, Koren-Karie et al. (2009)

reported that secure attachment among children with aut-

ism was related to a variety of developmental competencies

and greater parental sensitivity, but not to the severity of

clinical features of autism (also see van Ijzendoorn et al.

2007). On the other hand, greater severity of autism may be

associated with higher levels of individual and family

burden (Stuart and McGrew 2009). Hoffman et al. (2009)

reported a signifcant relationship between child autism

severity and parent ill-health, level of depression, and

negative perceptions of spouse, as well as the degree of

closeness, or attachment level, between mother and child.

Indeed, research on a variety of disabilities has yielded

evidence that symptom severity is associated with greater

levels of burden for parents and the family system, creating

more strained relationships (Baker et al. 2005; Pakenham

et al. 2005; Warfeld 2005).

There are additional grounds for distinguishing between

relatedness and relationships among individuals with aut-

ism. On the one hand, there is evidence that across the

lifespan, individuals with autism are atypical in various

aspects of their interpersonal relatedness. For example,

direct observations of infants (e.g., Charman et al. 1997), as

well as retrospective parental reports (e.g., Wimpory et al.

2000), reveal that even very young children with autism

have impairments in the frequency or intensity of eye

contact, turn-taking, and referential looking. Among older

children with autism, there are reports of the children’s

abnormalities in coordinating expressions of affect, ges-

tures and eye contact with other people, for example in

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170 J Autism Dev Disord (2013) 43:168–178

contexts involving joint action and attention (Kasari et al.

1990), face-to-face interaction (Dawson et al. 1990),

greetings and farewells (Hobson and Lee 1998), and con-

versations (Capps et al. 1998; Garcı́a-Pérez et al. 2007).

On the other hand, there is also evidence that children

with autism are not so atypical in certain features of their

attachments. Several published studies indicate how young

children with autism do respond to separation from and

reunion with their caregivers, at least in the short-term

(e.g., Shapiro et al. 1987; Willemsen-Swinkely et al. 2000;

Sigman and Mundy 1989; Yirmiya and Sigman 2001).

Many (not all) 2- to 5-year-old children with autism are

like matched developmentally delayed children in showing

somewhat variable mood changes such as fretting when

their caregiver leaves them, and upon reunion they tend to

spend more time alongside the caregiver than a stranger.

When allowance is made for their sometimes idiosyncratic

behavior, a substantial number of children with autism are

rated as securely attached (Rogers et al. 1991; Shapiro et al.

1987). Therefore the children’s relationship with their

caregivers is clearly special, even though their qualities of

relatedness are atypical. The relatively coherent forms of

jealousy seen among children with autism (e.g., Bauminger

2004) may refect such attachment processes, and account

for the dissociation between jealousy and atypicalities in

the children’s expressions of other social emotions such as

guilt and concern (Hobson et al. 2006).

In the present study, we employed independent mea-

sures of autism severity, parent–child relatedness and

parent–child relationship, in order to evaluate the relations

among these variables. Children’s performance on the

Autism Diagnostic Observation Schedule (ADOS: Lord

et al. 2002) served as an index of autism severity (Gotham

et al. 2009). We employed the Dyadic Coding Scales of

Humber and Moss (2005) to assess interpersonal related-

ness during videotaped semi-structured parent–child inter-

actions. The DCS includes ratings of social coordination,

communication, appropriate role assumption, emotional

expression, responsivity/sensitivity, tension/relaxation,

mood, and enjoyment. Finally, the Parent–Child Relation-

ship Inventory (Gerard 1994) was used to gather systematic

parent report of support, satisfaction with parenting,

involvement, communication, limit setting, autonomy, and

role orientation.

Our single prediction was that with increasing severity

of children’s autism as assessed on the ADOS, qualities of

parent–child relatedness would be negatively affected, as

expressed through lower scores on the Dyadic Coding

Scales. Although we consider there to be some degree of

dissociation between relatedness and relationships in aut-

ism, we were uncertain about the degree to which severity

of autism might affect parent–child relationships, and made

no prediction in this respect.

Methods

Participants

Participants were 25 children with autism aged between 4 and

14 years (M = 7.4 years, SD = 2.2 years). Although there

was a wide age range, the majority of the children (92 %)

were aged 10 or younger. The children were mainly male (19

males, 6 females) and took part in the procedures along with

the parent identifed by the family as the primary caregiver

(80 % mothers, 20 % fathers). Four of the primary parents

were single parents and the remaining 21 were in two-parent

households. Primary parents ranged in age from 33 to 61

years. The primary parents were well educated (some college:

n = 6; college degree: n = 11; postgraduate education:

n = 8). Participants were recruited from autism organiza-

tions throughout West Michigan. The ethnic breakdown of

child participants was as follows: African American 4 %,

Hispanics 4 %, Caucasian 88 %, and Asian 4 %. All partic-

ipant children had received a previous clinical diagnosis of an

autism spectrum disorder, and this was in keeping with the

results of ADOS administration in the present study.

Procedure

Child participants were evaluated with the ADOS in a clinic

setting by the primary researcher, who was trained to admin-

ister and score the ADOS at the University of Michigan. The

appropriate ADOS protocol was selected based on the age and

language level of each child. The two four-year-old children

received a Module 1 and a Module 2, the 21 5–10-year-old

children received Module 1 (n = 5), Module 2 (n = 11) or

Module 3 (n = 5), the 12-year-old child received a Module 3

and the 14-year-old child was administered a Module 2.

Parent participants were provided with the PCRI parent

questionnaire to read and complete in the clinic setting.

The PCRI was scored by the primary researcher using the

scoring procedures in the manual.

The videotaped parent–child interaction session occur-

red within the clinic setting, and consisted of a 10-min

interaction period during which the primary parent and

child were provided with a standard set of play materials

appropriate for the age and developmental level of the

child, for instance balls, active games, board/card games,

blocks, puzzles, and bean bags. The parent and child were

invited to settle and to use the materials together in

whatever ways they wished. Parents were asked to set

limits and boundaries as they would with the child at home.

The parent–child interaction videos were rated by a team of

two coders—a primary coder, and secondary coder for

reliability—both of whom were blind to the children’s

diagnoses, hypotheses and predictions of the study, and the

results of all other measures used in the study.

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171 J Autism Dev Disord (2013) 43:168–178

Measures

Severity of Autism

The Autism Diagnostic Observation Schedule (ADOS; Lord

et al. 2002) is widely considered a gold standard instrument

for identifying clinical features of autism spectrum disorder.

The ADOS is a standardized assessment of communication,

social interaction, behavior, sensory stereotypies, and play or

imaginative use of materials. One of four modules is

administered based on the individual’s developmental and

language level. Structured activities and materials provide

standard contexts in which social interactions, communica-

tion, and other behavior relevant to autism spectrum disor-

ders are observed.

Recently revised algorithms for the ADOS allow for

increased specifcity in classifcation of clinical features

(Gotham et al. 2009), as well as increased alignment between

the various modules used with participants of differing ages

and functioning levels (Gotham et al. 2008). A calibrated

severity score, called the autism severity metric, is calculated

to identify severity of clinical features independent of par-

ticipant demographics. This metric, ranging from 1 to 10,

allows for standardized comparison of total scores across

modules. A severity metric score of 1–3 is considered

‘‘nonspectrum,’’ a severity metric score of 4–5 is considered

‘‘autism spectrum disorder,’’ and a severity metric score of

6–10 is considered consistent with the diagnosis of ‘‘aut-

ism.’’ This method of scoring is a departure from the current

ADOS manual, but refects current research conducted by the

test authors (Gotham et al. 2009), who gave permission for its

use in the context of the current study.

Patterns of Parent–Child Relatedness

The Dyadic Coding Scales were developed by Humber and

Moss (2005) to rate qualitative aspects of parent–child

interaction for school-age children. While not commercially

available, permission for use of this measure for the present

study was granted by its developers. Nine domains are rated

on a scale of 1–7, indicating the quality of the following

aspects of interaction: coordination, communication, partner

roles, emotional expression, responsivity/sensitivity, ten-

sion/relaxation, mood, and enjoyment. For example, low

scores on co-ordination refect interactions that are unpro-

ductive and involve friction between the child and parent;

low scores on communication refect ignoring behavior,

withdrawal, incongruent utterances, and/or awkward silen-

ces; and low scores on emotional expression indicate intense

and/or constricted emotional exchanges. An overall rating is

also assigned based on the overall quality of parent–child

interaction. Here low scores refect a sense of indifference,

lack of pleasure, and/or confict.

This tool was designed for and used within a study

analyzing school-age attachment and mother–child inter-

action, and has yielded good inter-rater reliability in a

previous study of children with autism (Hobson et al.

2008). In the present study, on the basis of seven cases

rated independently, the intra-class correlations (ICC) for

each subscale were between 0.83 and 0.98 (where values

above 0.80 are considered excellent).

Parent–Child Relationship

The Parent–Child Relationship Inventory (Gerard 1994) is

a self-report questionnaire for parents of children ages 3

through 15 years, and takes approximately 15 min to

complete. The inventory assesses parents’ views on par-

enting and aspects of the parent–child relationship. The

seven scales cover parental support, satisfaction with par-

enting, involvement, communication, limit setting, auton-

omy, and role orientation. For instance, Satisfaction refects

the amount of pleasure and fulfllment derived from par-

enting (e.g. ‘I get as much satisfaction from having chil-

dren as other parents do.’), Involvement has to do with a

parent’s level of knowledge of and interaction with the

child (e.g. ‘I spend a great deal of time with my child’),

Communication concerns parents’ perception of the

effectiveness of their communication (e.g. ‘I can tell by my

child’s face how he or she is feeling’), and Autonomy

focuses on the parent’s ability to promote the child’s

independence (e.g. ‘I worry a lot about my child getting

hurt’). The scales are rated on a scale of 1 (strongly agree)

to 4 (strongly disagree), yielding raw scores, T scores, and

standardized scores for each scale. Higher scores indicate

more positive parent–child relationships. Separate scoring

sheets and norms are provided for mothers and fathers. The

measure was standardized on over 1,100 parents across the

United States. Reliability, as determined by internal con-

sistency, had a median alpha of 0.82, and the mean test–

retest correlations were 0.81. PCRI raw scores are con-

verted to T scores, normalized standard scores with a mean

of 50 and a standard deviation of 10. A T score which is

more than one standard deviation below the mean (i.e. less

than 40) suggests problems in the domain the scale refects

and very low T scores (i.e. below 30) indicate the possi-

bility of very serious problems.

Results

Descriptive Data

Descriptive data from the Autism Diagnostic Observation

Schedule (ADOS) calibrated severity metric, the play-

based observation coded with the Dyadic Coding Scales

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172 J Autism Dev Disord (2013) 43:168–178

Table 1 Descriptive data for study variables expression, roles, and sensitivity/responsivity. On the other

Variable M (SD) Range hand, the children with autism in the present sample received

scores that were as low as those received by a parent–child ADOS 6.88 (1.51) 4–10 dyads in which children had disorganized/controlling DCS attachment patterns. The effect sizes for comparisons

Coordination 4.04 (1.43) 2–6 between our autism sample and the disorganised/controlling Communication 3.76 (1.71) 1–7 sample of Humber and Moss were all negligible (d range = Partner roles 3.80 (1.08) 2–6 0.07–0.16) with the exception of small effect sizes

Emotional expression 3.40 (1.78) 1–7 (d range = 0.24 and 0.28) for the sub-scales of overall

Responsivity 3.60 (1.26) 2–6 interaction and emotional expression. This suggests that our

Attention/relaxation 3.96 (1.51) 1–7 autism sample showed marked diffculties in parent–child

Mood 4.00 (1.58) 1–7 relatedness. Although several of the children in the current

Enjoyment 3.84 (1.49) 1–6 sample were older than those in the Humber and Moss (2005)

Overall 3.84 (1.37) 2–6 study, chronological age was not associated with any of the

PCRI subscales of the Dyadic Coding Scales, r(24) range = 0.11

Support 48.80 (6.22) 36–59 to 0.39, all NS.

Satisfaction 48.28 (7.93) 33–66

Involvement 44.32 (7.28) 23–53 Parent Report of Relationship Quality

Communication 35.44 (7.72) 21–53

Limit setting 48.60 (9.22) 23–69 On the PCRI, all of the subscales, with the exception of

Autonomy 51.12 (9.67) 24–70 Communication, received mean scores consistent with non-

Role orientation 51.88 (8.90) 31–64 problematic parenting. With regard to the domain of

Communication, the mean T score was in the low range.

This score might refect how parents of children with aut-

(DCS), and the parent-reported features of parent–child ism may struggle to communicate well with their children

relationship on the Parent–child Relationship Inventory including simple conversation and the ability to talk with

(PCRI) are given in Table 1, where the standard deviations their children. Low Communication scores (T score 30–39) and ranges convey the substantial ranges of scores on each indicate parental diffculty in talking to a child and in

measure. ‘getting through’ to that child. Figure 2 presents numbers

of parents with low (T score \ 40) and very low Calibrated Severity Scores of the ADOS (T score \ 30) scores, by individual scales.

From Fig. 2, it can be seen how most of the parents in the

In keeping with the children’s previous clinical diagnosis, study reported problems with Communication (Low n = 11, scores on the calibrated severity metric of the ADOS ran- Very Low n = 7). Very low T scores (less than 30) often ged from 4 (mild autism/Autism Spectrum Disorder) to 10 indicate the parent feels helpless in his/her attempts to

(severe autism). Autism severity was not associated with communicate with the child and discover the child’s needs.

chronological age in this sample, r(25) = 0.11, NS. Autism There were also several parents who reported diffculties severity was also not associated with the ADOS Module with Involvement (Low n = 5, Very Low n = 1). Items on the child received, r(25) = -0.23, NS. the Involvement scale refect the parent’s propensity to spend

time with their children and get to know them. Very low

Parent–child Interaction on the DCS scores on this scale can refect how parents feel there is a

great distance between themselves and their children.

It may be helpful to represent the current results on the

DCS in relation to those previously reported by Humber Autism Severity and Parent–Child Relations

and Moss (2005).

As can be seen in Fig. 1, children with autism in the current Two separate multivariate regressions were conducted to

sample received scores that were signifcantly lower than examine the relations between autism symptom severity

typically developing securely attached children. The effect (ADOS) and a) parent–child interaction (DCS), and b) par-

sizes for these differences were medium for tension/relaxation ent–child relationship (PCRI). Ideally, given seven predictor

(d \ 0.5) and for overall interaction, coordination, commu- variables, a sample size of 44 participants would have been nication, enjoyment and mood (d range = 0.71–0.78) for utilized to achieve an alpha of 0.05 with a large effect size overall interaction, coordination, communication, enjoyment, (Green 1991). A Bonferroni adjustment was considered, but

and mood, and large (d range = 0.91–0.98) for emotional this would potentially increase the likelihood of committing

123

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173

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J Autism Dev Disord (2013) 43:168–178

Fig. 1 Scores from the Dyadic 7 Coding Scales from children

with autism (current study) and 6 Children without Autism (as

reported by Humber and Moss

2005). Note: Typ- 5

Secure = typically developing

securely attached children 4 (n = 71) and Typ-Dis/ Con = typically developing 3 children with disorganised/

controlling attachment (n = 18) 2

1

a Type II error (Nakagawa 2004). Therefore, the adjustment

was not made for this analysis.

The results of the regression for ADOS predicting DCS

are shown in Table 2. The data suggest that the calibrated

severity scores on the ADOS predict the DCS subscale

scores of co-ordination, communication, emotional expres-

sion, responsivity, and mood, as well as overall scores, F(9,

15) = 3.38, p \ .05. The results were just shy of signif- cance for predicting tension/relaxation and enjoyment, and

not signifcant for partner roles. It is plausible that parents

and children experience tension and/or enjoyment within

their interactions based on factors other than symptom

severity.

It is important to note that the ADOS Module received

by the child was also signifcantly associated with almost

all of the DCS subscales (r range = 0.35–0.62). This

suggests that general development/language level may also

make an important and independent contribution to quality

of parent–child interaction. Table 3 provides partial cor-

relations between the children’s calibrated severity scores

on the ADOS and the subscales of the DCS, after con-

trolling for variance associated with the ADOS Module

received. When both ADOS Module and calibrated

N u

m b

er o

f P

ar en

ts (

o u

t o

f 25

)

25

20

15

10

5

0

Low Very Low

PCRI Subscale

Fig. 2 Number of parents with low (T score \ 40) or very low (T score \ 30) PCRI scores

Typ-Secure Typ-Dis/Con Autism

Ov Coord Com Em Ex Enj Mood Role Sens Tens

severity score were entered into a linear regression, 50 %

of the variance (R2 = 0.49) in the DCS overall interaction

score was explained, F(2, 22) = 10.93, p \ .001. A question arises, whether there are particular items of

the ADOS that correspond most closely with subscales of

the DCS. The present study was not designed to address

this question, especially insofar as items on the ADOS vary

depending on the Module employed. On informal review, it

was evident that most of the correlations reported between

autism Calibrated Severity Scores and the subscales of

the DCS (Table 3) were very similar to those between

uncalibrated ADOS social-affect raw scores (range -0.37

to -0.63), whereas the correlations for ADOS scores on

restricted and repetitive behaviour and interests were sub-

stantially lower (range -0.12 to -0.34). Not surprisingly,

therefore, ADOS indices of social-affect (although raw

scores were not calibrated across Modules) were most

closely related to the DCS relatedness measures.

In contrast with the correlations between autism severity

and measures of personal relatedness, autism severity was

not signifcantly associated with any of the PCRI parent–

child relationship subscales (where correlations ranged

from 0.10 to 0.39). The results of the regression for ADOS

predicting PCRI (support, satisfaction, involvement, com-

munication, limit setting, autonomy and role orientation)

were not signifcant, F(7, 17) = 0.94, p = .50. Therefore

there appeared to be little relation between ADOS scores

and PCRI scores. On the other hand, ADOS Module was

related to the Communication subscale of the PCRI,

r(25) = 0.44, p \ .05. This suggests that the parent- reported diffculties communicating with children with

autism may have been linked to the child’s developmental

level/language functioning.

Individual differences in scores on the PCRI were not

related to observations of parent–child relatedness on the

DCS, with only one exception. There was a counter-intuitive

fnding that the DCS subscale tension/relaxation was inver-

sely related to the PCRI subscales of Support (p \ .05), Limit Setting (p \ .05), and Autonomy (p \ .01). One

123

174 J Autism Dev Disord (2013) 43:168–178

Table 2 Multivariate regression for ADOS predicting DCS

Dependent variables B SE t p R2 Power

Co-ordination -0.49 0.17 -2.92 .01 0.27 0.80

Communication -0.73 0.18 -3.99 .00 0.41 0.97

Partner roles -0.18 0.15 -1.21 .24 0.06 0.21

Emotional expression -0.58 0.21 -2.72 .01 0.24 0.74

Responsivity -0.39 0.15 -2.52 .02 0.21 0.68

Tension relaxation -0.39 0.19 -2.00 .06 0.15 0.48

Mood -0.44 0.20 -2.21 .04 0.18 0.56

Enjoyment -0.34 0.19 -1.75 .09 0.12 0.39

Overall -0.50 0.16 -3.18 .00 0.31 0.86

p Values uncorrected for multiple comparisons

Table 3 Correlation coeffcients for autism severity and parent– child interaction, including partial correlations with ADOS module

controlled

DCS subscale r Partial r

Coordination -0.52** -0.48*

Communication -0.64** -0.65**

Partner roles -0.25 -0.16

Emotional expression -0.49* -0.45*

Responsivity -0.47* -0.41*

Tension/relaxation -0.39 -0.33

Mood -0.42* -0.36

Enjoyment -0.34 -0.27

Overall interaction -0.55** -0.52**

* p \ .05; ** p \ .01

possible interpretation of this exploratory and unanticipated

fnding may be that more relaxed parent–child dyads inclu-

ded a permissive parent who tended not to set as many limits

or promote the child’s independence.

Discussion

The principal fndings of this study were clear-cut. Within

a group of 25 children with autism aged between 4 and

14 years, there was evidence that with increased severity of

autism as measured by the calibrated severity scores of the

ADOS, qualities of videotaped parent–child interaction

such as co-ordination, communication, emotional expres-

sion, responsivity, and mood were adversely affected.

Therefore features of autism (including those apparent in

communication and social interaction) as rated in stan-

dardized ADOS assessments were good predictors of less

satisfactory parent–child interactions. Impairments in

interpersonal relatedness appeared to constitute an impor-

tant bridge between ADOS severity scores and qualities of

dyadic interaction.

Here the results contrast with another fnding, namely

the low correlation between the same features of autism

severity and aspects of the parent–child relationship as

reported by the parents. For instance, ADOS severity

scores did not predict parental satisfaction, involvement,

or communication, where satisfaction refected the amount

of pleasure and fulfllment derived from parenting,

involvement had to do with a parent’s level of knowledge

of and interaction with the child, and communication

concerned parents’ perception of the effectiveness of their

communication.

One possible source of scepticism in interpreting the

fndings on relatedness, is whether the results might refect

little more than the outcome of applying similar measures

in two settings. However, the differences between the

ADOS and the DCS extend beyond the obvious and

important contrast between a semi-structured procedure

conducted by a stranger (ADOS), and a measure applied to

natural parent–child interactions (DCS). A major focus of

the ADOS is upon specifc forms of emotional/communi-

cative behaviour exhibited by the participant, for instance

(depending on the module) facial expression, pointing, eye

contact, joint attention, and showing. Although qualities of

dyadic engagement such as rapport or shared enjoyment

are also taken into account, the emphasis is on particular

forms of behaviour exhibited by the child. In contrast, DCS

ratings apply to more global qualities of child–adult

interaction. In the case of communication, for example,

low scores are given for a dearth of communication

involving withdrawal and awkward silences, whereas high

scores are given for clear, direct and meaningful words and

gestures, comfortable silences, and a balance in who does

the talking and listening. A low overall rating on the DCS

would correspond to disinterest, inaccessibility, lack of

pleasure, and the presence of discord and confict, whereas

a high score would be given when there is mutual

responsiveness, enjoyment, and harmonious and agreeable

interactions with genuine interpersonal interest.

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175 J Autism Dev Disord (2013) 43:168–178

Of course, contrasts between measures do not imply that

the phenomena being measured are totally distinct. In the

present instance, there is no implication that children’s

potential for social relatedness as assessed on the ADOS is

independent of child-parent relatedness as evaluated using

the DCS. The present fndings suggest just the opposite.

The point is that those features of relatedness that are so

important for assessing the severity of autism (on the

ADOS) are also connected with interpersonal engagement

and relatedness in parent–child interactions.

When we turn to the fndings on parent–child relation-

ships, it should be noted that these are not altogether in

keeping with other evidence that children’s symptom

severity may have a negative impact on parent–child

relationships. Hoffman et al. (2009) reported that chil-

dren’s autism symptom severity was related to their rela-

tionships with their mothers, specifcally in the areas of

attachment and closeness. These results emerged in the

context of a study of maternal stress levels, and portray

aspects of relationship that differ from those identifed by

means of the PCRI. It was also the case that in the present

study, a number of parents’ responses on the PCRI inclu-

ded reference to diffculties over communication and

involvement with their offspring.

The results may be considered from a number of per-

spectives. To begin with, they support the conceptual dis-

tinction between two partly separable aspects of social

experience and behavior: interpersonal relatedness and

relationships. Of course it is not possible completely to

divorce qualities of moment-to-moment interpersonal con-

nectedness and adjustment on the one hand, and features of

the relationships between any two individuals engaged in

such interactions. Yet if we consider the case of autism,

biological factors that might seriously disrupt many aspects

of affected children’s relatedness to people do not neces-

sarily have the same impact on the children’s relationships.

For instance, as Hobson et al. (2006) discuss, patterns of

attachment and associated feelings such as jealousy might be

spared among individuals with autism, even when their

intersubjective engagements (and especially, their feelings

for other people) might lack coherence. Results from the

present study are in keeping with the view that relationships

between children with autism and their parents are not

determined by the same factors that appear to constrain

certain aspects of interpersonal relatedness.

Certain limitations to the study are worth highlighting.

Firstly, it remains to establish how specifc is the lack of

correlation between ADOS measures of autism severity and

parent reports of qualities of parent–child relationships. It

would be helpful to compare the present results with fndings

when the same ADOS measures are assessed in relation to

other forms of parent report, for instance reports on the

children’s communicative abilities, so that the degree of

concordance (or lack of concordance) between these dif-

ferent kinds of measure might be evaluated. Secondly, cross-

sectional studies such as this need to be complemented by

longitudinal research, if one is to trace how far impairments

in interpersonal relatedness either shape, or are shaped by,

other features of autism. Correlations do not establish the

direction in which causal arrows point. In this respect, we

stress the dangers of supposing that diffculties in parent–

child interactions infuence, rather than refect, children’s

clinical presentation, although of course there may be com-

plex cycles of cause and effect.

The fndings need to be set within an appropriate theo-

retical framework for understanding the development of

child-parent relations, from both relatedness and relation-

ship perspectives. As discussed in the Introduction, previ-

ous research has demonstrated that children infuence their

own development through their interactions and relation-

ships with parents (Bell 1968; Cummings et al. 2000;

Sameroff and Chandler 1975). For example, children’s

behavioral and relational diffculties can lead to parenting

stress, which may alter parenting behavior and perpetuate

the children’s diffculties (Hastings 2002). On the other

hand, such vicious cycles of interaction are not inevitable,

nor need they be pervasive. The present results highlight

not only the impact of autism on child–parent relatedness,

but also the potential for child–parent relationships to

develop despite such challenges.

The results may also be considered from the viewpoint

of intervention. Research on the bidirectional nature of

parent–child interactions has shown that child development

can be changed in a positive manner as a result of parents

altering specifc interactive behaviors (Arnold et al. 1993;

Hoagwood et al. 2001). Yet in the feld of autism, many

interventions do not target the areas of social-communi-

cative diffculty that are core features of autism (Charman

et al. 2004), nor do they follow recommendations to

include parents in the treatment process (Howlin 2000).

Yet again, there is encouraging evidence that interven-

tions aimed at creating change in parents and, thus, in

parent–child relations may be effective in reducing the

severity of autism and/or reducing its impact on the parent–

child relationship (Green et al. 2010). Training mothers in

mindfulness, for example, has led to signifcant reduction

in maladaptive behavior of their children with autism

(Singh et al. 2006). Mothers involved in that study reported

an increase in overall parenting satisfaction, increased

satisfaction with their parenting skills, and an increase in

mindfulness with their children. A program aimed at

increasing parental responsiveness to children with autism

had a positive impact on the children’s social-emotional

development (Mahoney and Perales 2003). An intervention

designed to reduce problematic behavior in children with

autism demonstrated that shifting parents from either an

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176 J Autism Dev Disord (2013) 43:168–178

authoritarian or permissive style of parenting to a more

authoritative style resulted in positive behavior changes in

the child (Whittingham et al. 2009). Other studies have also

shown that providing training to parents yields improve-

ments in joint attention (Aldred et al. 2004; Jones et al. 2006;

Schertz and Odom 2007), communication (Symon 2005;

Vismara et al. 2009), school-readiness skills (Ozonoff and

Cathcart 1998), shared engagement and problem solving

(Wieder and Greenspan 2003), reduced problematic

behavior (Whittingham et al. 2009; Solomon et al. 2008;

Sofronoff et al. 2004), and improved emotional co-regula-

tion (Gulsrud et al. 2010). Training parents of children with

autism to interact with their child has been successful at

reducing symptoms regardless of initial symptom severity

(Solomon et al. 2007).

Findings such as these stress the importance of under-

standing social reciprocity as a two-way street, and

changing both children and those with whom they interact

(Gernsbacher 2006). Interventions for children with autism

which focus upon parent–child interaction and target

communication may have important implications for the

children’s development (Aldred et al. 2004; Green et al.

2010; Kasari et al. 2008; Wetherby and Woods 2006).

Indeed, it may prove that rather than implementing specifc

‘training’ procedures, a focus of intervention for children

with autism might be the pacing, structuring, and sensitive

adjustment of everyday activities that involve children and

their parents. This can increase opportunities for deeper

interpersonal engagement, co-ordination, communication,

and so on, as might happen (for example) in Relationship

Development Intervention (Gutstein 2009; Gutstein et al.

2007; Hobson and Hobson 2011). In keeping with this

view, Green et al. (2010) reported signifcant improvement

in parent–child synchrony, communication, and shared

attention when treatment focussed on the parent–child

communication system. Whatever the case in these

respects, an important challenge is to determine how best

to modify and foster parent–child interaction in order to

promote social engagement and social development, given

the characteristics and environment of particular children

(Howlin et al. 2009; Rogers and Vismara 2008).

Acknowledgments NB acknowledges the support of her disserta- tion committee members in carrying out the work, with appreciation

to Dr. Magy Martin, Dr. Rodney Ford, and Dr. Andrea Miller. We are

deeply grateful to the parents and their children who took part in this

project. JH and RPH gratefully acknowledge the Foundation for

Autism Research and Remediation (FARR) for grant support that

enabled the authors to provide consultation to NB during her dis-

sertation, coding on the DCS variables, and preparation of the man-

uscript for dissemination. We also thank Fionnuala Larkin and Joanna

Shepherd for their assistance with coding. We thank the Tavistock

Clinic NHS and Portman Trust for the opportunity to spend a sab-

batical at the Center for Advanced Study in Behavioral Sciences

where this paper was completed.

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  • c.10803_2012_Article_1562.pdf
    • Autism Severity and Qualities of Parent--Child Relations
      • Abstract
      • Introduction
        • Relatedness, Relationships, and Autism
      • Methods
        • Participants
        • Procedure
        • Measures
          • Severity of Autism
        • Patterns of Parent--Child Relatedness
        • Parent--Child Relationship
      • Results
        • Descriptive Data
          • Calibrated Severity Scores of the ADOS
          • Parent--child Interaction on the DCS
          • Parent Report of Relationship Quality
        • Autism Severity and Parent--Child Relations
      • Discussion
      • Acknowledgments
      • References

Attachment 2

The Interpretative Conference: Sharing a Diagnosis of Autism with Families Michal S. Nissenbaum, Nona Tollefson, and R. Matthew Reese

With the recent reauthorizations of Public Law 94-142, there has been a greater push to identify and treat children with autism. As a result, autism is currently diagnosed and treated at younger ages, and nonmedical professionals who work with young children increasingly face the task of informing parents that their child has autism. To examine professionals’ and parents’ perceptions of giving and receiving a diagnosis of autism, 11 nonmedical professionals and 17 parents of children with autism participated in a series of interviews that were transcribed, unitized, and categorized using Lincoln and Guba’s (1985) method of naturalistic inquiry. Based on the interview data, nine recom- mendations for practice were developed. The recommendations provide guidelines that nonmedical professionals can consult when faced with the task of sharing a diagnosis of autism.

utism is classified as a Pervasive Developmental Disorder (PDD)

.JL in the Diagnostic and Statisti- cal Manual of Mental Disorders-Fourth Edition (DSM-IV; American Psychiatric Association, 1994). Pervasive Develop- mental Disorders are characterized by impaired and deviant social and commu- nication skills, as well as stereotypical behaviors and restricted interests that manifest prior to 3 years of age (APA, 1994). Autism is frequently considered a &dquo;spectrum&dquo; disorder (Wing, 1996) in that the manifestation of symptoms can

range from severe to mild. Similarly, autism affects children with a range of

cognitive, social, and communication abilities (Tanguay, 2000).

According to the DSM-IV, Pervasive Developmental Disorders include Autis- tic Disorder, Rett’s Disorder, Childhood Disintegrative Disorder, Asperger’s Dis- order, and Pervasive Developmental Dis- order Not Otherwise Specified (PDD NOS). For the remainder of this article, the generic term of autism is used to de- scribe individuals who demonstrate char-

acteristics of any of the pervasive devel- opmental disorders. The cause of autism is not clearly un-

derstood. The current literature supports the biological basis for autism (Burger & Warren, 1998; Cook, 1998; Kontantar- eas & Homatidis, 1999); however, there are no tests to measure the biological markers of autism at this time. Therefore, professionals must rely on observations of behavior over a period of time (Lord & Risi, 1998). Currently, measures are available to observe and assess character- istics of autism, and many of these mea- sures focus specifically on atypical behav- iors associated with autism, as well as the child’s ability to use social and commu- nication skills. The literature suggests that most cases of autism can be reliably diagnosed between the ages of 3 and 5 years (Filipek et al., 1999; Lord & Rossi, 1998). With the increase in the number of

children being diagnosed with autism, the literature on treatments and inter-

ventions to assist children and their fam- ilies has also increased (Campbell, Schop-

ler, Cueva, & Hallin, 1996; Gresham, Beebe-Frankenberger, & MacMillian, 1999; Howlin, 1998; Rogers, 1998). However, literature focused on inform- ing parents that their child has autism is limited.

Literature on collaboration, parent- professional relationships, and partnerships offers various models that professionals can use to conference and collaborate with families (Dunst, Trivette, & Deal, 1988; Fine & Gardner, 1994; Fine & Simpson, 2000; Turnbull & Turnbull, 1997; Wise, 1995). These process-oriented models, written for school personnel such as teachers and school psychologists, pro- vide guidelines for working collabora- tively with families over an extended pe- riod of time. However, the assessment and interpretative conference for a diag- nosis of autism frequently occurs in a fi- nite amount of time. In these cases, pro- fessionals do not have the luxury of frequent and repeated visits with the fam- ily. Instead, the assessment occurs over a few days in a clinic setting with an inter- pretative conference scheduled soon af- terward.

The majority of literature examining the interpretative conference is directed toward physicians who diagnose specific disabilities, such as Down syndrome (Cunningham, Morgan, & McGuckin, 1984; Pueschel, 1985; Sharp, Strauss, & Lorch, 1992), physical disabilities (Turner & Sloper, 1992), cystic fibrosis (jedlicka- Kohler, Gotz, & Eichler, 1996; Quittner, DiGirolamo, Michel, & Eigen, 1992), cancer (Greenberg et al., 1984), and chronic illness (Myers, 1983). These dis-

The Interpretative Conference: Sharing a Diagnosis of Autism with Families Michal S. Nissenbaum, Nona Tollefson, and R. Matthew Reese

With the recent reauthorizations of Public Law 94-142, there has been a greater push to identify and treat children with autism. As a result, autism is currently diagnosed and treated at younger ages, and nonmedical professionals who work with young children increasingly face the task of informing parents that their child has autism. To examine professionals' and parents' perceptions of giving and receiving a diagnosis of autism, 11 nonmedical professionals and 17 parents of children with autism participated in a series of interviews that were transcribed, unitized, and categorized using Lincoln and Guba's (1985) method of naturalistic inquiry. Based on the interview data, nine recom­ mendations for practice were developed. The recommendations provide guidelines that nonmedical professionals can consult when faced with the task of sharing a diagnosis of autism.

A utism is classified as a Pervasive Developmental Disorder (PDD) in the Diagnostic and Statisti­ cal Manual of Mental DisorderrFourth Edition (DSM-IV; American Psychiatric Association, 1994). Pervasive Develop­ mental Disorders are characterized by impaired and deviant social and commu­ nication skills, as well as stereotypical behaviors and restricted interests that manifest prior to 3 years of age (APA, 1994). Autism is frequently considered a "spectrum" disorder (Wing, 1996) in that the manifestation of symptoms can range from severe to mild. Similarly, autism affects children with a range of cognitive, social, and communication abilities (Tanguay, 2000).

According to the DSM-IV, Pervasive Developmental Disorders include Autis­ tic Disorder, Rett's Disorder, Childhood Disintegrative Disorder, Asperger's Dis­ order, and Pervasive Developmental Dis­ order Not Otherwise Specified (PDD NOS). For the remainder of this article, the generic term of autism is used to de­ scribe individuals who demonstrate char-

acteristics of any of the pervasive devel­ opmental disorders.

The cause of autism is not clearly un­ derstood. The current literature supports the biological basis for autism (Burger & Warren, 1998; Cook, 1998; Kontantar­ eas & Homatidis, 1999); however, there are no tests to measure the biological markers of autism at this time. Therefore, professionals must rely on observations of behavior over a period of time (Lord & Risi, 1998). Currently, measures are available to observe and assess character­ istics of autism, and many of these mea­ sures focus specifically on atypical behav­ iors associated with autism, as well as the child's ability to use social and commu­ nication skills. The literature suggests that most cases of autism can be reliably diagnosed between the ages of 3 and 5 years (Filipek et al., 1999; Lord & Rossi, 1998).

With the increase in the number of children being diagnosed with autism, the literature on treatments and inter­ ventions to assist children and their fam­ ilies has also increased (Campbell, Schop-

ler, Cueva, & Hallin, 1996; Gresham, Beebe-Franken berger, & MacMillian, 1999; Howlin, 1998; Rogers, 1998). However, literature focused on inform­ ing parents that their child has autism is limited.

Literature on collaboration, parent­ professional relationships, and partnerships offers various models that professionals can use to conference and collaborate with families (Dunst, Trivette, & Deal, 1988; Fine & Gardner, 1994; Fine & Simpson, 2000; Turnbull & Turnbull, 1997; Wise, 199 5). These process-oriented models, written for school personnel such as teachers and school psychologists, pro­ vide guidelines for working collabora­ tively with families over an extended pe­ riod of time. However, the assessment and interpretative conference for a diag­ nosis of autism frequently occurs in a fi­ nite amount of time. In these cases, pro­ fessionals do not have the luxury of frequent and repeated visits with the fam­ ily. Instead, the assessment occurs over a few days in a clinic setting with an inter­ pretative conference scheduled soon af­ terward.

The majority of literature examining the interpretative conference is directed toward physicians who diagnose specific disabilities, such as Down syndrome ( Cunningham, Morgan, & McGuckin, 1984; Pueschel, 1985; Sharp, Strauss, & Lorch, 1992 ), physical disabilities (Turner & Sloper, 1992), cystic fibrosis (Jedlicka­ Kohler, Gotz, & Eichler, 1996; Quittner, DiGirolamo, Michel, & Eigen, 1992), cancer (Greenberg et al., 1984), and chronic illness (Myers, 1983). These dis-

FOCUS ON AUTISM AND OTHER DEVELOPMENTAL DISABILITIES ---- VOLUME 17, NUMBER 1, SPRING 2002 ---­

PAGES 30--43 Downloaded from foa.sagepub.com at FLORIDA INTERNATIONAL UNIV on June 16, 2015

31

abilities often present with clear biologi- cal markers. This body of literature dis- cusses how the diagnosis could be shared with families around the time of birth but does not consider how parents and pro- fessionals felt about diagnosis and treat- ment suggestions offered during the early childhood years. Furthermore, there is limited information on how nonmed-

ical professionals, such as educators and psychologists, should inform families that their child has a disability such as autism. Although many of the recom- mendations described in the medical lit-

erature may be applicable to nonmedical professionals, these professionals have rarely been considered in most of the studies.

Shea (1993) wrote one of the few ar- ticles about giving a diagnosis of autism to parents. She offers suggestions for the interpretative conference that include setting goals for the conference, stating the diagnosis, and allowing families to react emotionally to the diagnosis. Shea also emphasizes the importance of the physical setting, the use of language, and a discussion of the child’s future. How-

Table 1 Information on Professional Participants

Table 2 Information on Parent Participants

Note. Participants 10 and 11 are spouses. Participants 12 and 13 are spouses.

ever, her chapter does not consider par- ents’ and professionals’ perceptions of how the interpretative conference was conducted.

The present study examined families’ and professionals’ perceptions of the in- terpretative conference that informed parents their child has autism. Both fam-

ily members and professionals reported their perceptions of autism and discussed their reactions to giving and receiving the diagnosis. Based on this information, recommendations for the interpretative conference are offered.

Method

Participants

Twenty-eight participants were inter- viewed for this study: 11 professionals who have diagnosed autism and 17 par- ents of children with autism.

Professionals. Eleven professionals from a medical center and a preschool were interviewed. The medical center

was located in a large midwestern city (a Center for Excellence in Developmental Disabilities Education Research and Ser-

vice), and the preschool was located in a smaller midwestern city (affiliated with the local public school district’s Early Childhood Special Education Program). In both settings, transdisciplinary or in- terdisciplinary teams offer assessments and provide a variety of diagnoses, in- cluding autism. Table 1 provides demo- graphic information for the sample of 11 I professionals.

Families. Table 2 provides demo- graphic information for the 17 family members. The majority of the partici- pants were from affluent White families

residing in one of the wealthiest counties in the country. Most participants worked outside of the home and had at least a

college education. Although one partici- pant was a single mother, a majority of the participants interviewed were mar- ried. Two of the 15 mothers interviewed

were the wives of the two fathers who

participated in the study. Most family

-------------------- VOLUME 17, NUMBER 1, SPRING 2002 --------------------

abilities often present with clear biologi­ cal markers. This body of literature dis­ cusses how the diagnosis could be shared with families around the time of birth but does not consider how parents and pro­ fessionals felt about diagnosis and treat­ ment suggestions offered during the early childhood years. Furthermore, there is limited information on how nonmed­ ical professionals, such as educators and psychologists, should inform families that their child has a disability such as autism. Although many of the recom­ mendations described in the medical lit-

erature may be applicable to nonmedical professionals, these professionals have rarely been considered in most of the studies.

Shea (1993) wrote one of the few ar­ ticles about giving a diagnosis of autism to parents. She offers suggestions for the interpretative conference that include setting goals for the conference, stating the diagnosis, and allowing families to react emotionally to the diagnosis. Shea also emphasizes the importance of the physical setting, the use of language, and a discussion of the child's future. How-

Table 1

1 2 3 4 5 6 7 8 9

10 11

2 3 4 5 6 7 8 9

10 11 12 13 14 15 16 17

Setting

Preschool Preschool Preschool Preschool Preschool Medical Medical Medical Medical Medical Medical

Parent

Mother Mother Mother Mother Mother Mother Mother Mother Mother Father Mother Father Mother Mother Mother Mother Mother

Information on Professional Participants

Title

Psychologist Speech pathologist Occupational therapist Social worker ECSE teacher Psychologist Psychologist Speech pathologist Speech pathologist Occupational therapist Physical therapist

Table 2

Degree

EdS MA MA MA MA PhD PhD MA MA MA MA

M/F

F F F F F M F F F F F

Information on Parent Participants

Age

32 22 32 41 40 37 35 34 38 37 35 34 35 43 33 34 41

Parental relationship

Married Single Married Married Married Married Married Married Married Married Married Married Married Married Married Married Married

Education level

College Some college College College Graduate school College College College College College College College College College Graduate school College Graduate school

Note. Participants 10 and 11 are spouses. Participants 12 and 13 are spouses.

Years experience

3 5 13 20 16 23 2 6 20 9 22

Age of child at

diagnosis

4 3 5 4 3 5 3 4 5 4 4 3 3 7 4 5 5

31

ever, her chapter does not consider par­ ents' and professionals' perceptions of how the interpretative conference was conducted.

The present study examined families' and professionals' perceptions of the in­ terpretative conference that informed parents their child has autism. Both fam­ ily members and professionals reported their perceptions of autism and discussed their reactions to giving and receiving the diagnosis. Based on this information, recommendations for the interpretative conference are offered.

Method

Participants

Twenty-eight participants were inter­ viewed for this study: 11 professionals who have diagnosed autism and 17 par­ ents of children with autism.

Professionals. Eleven professionals from a medical center and a preschool were interviewed. The medical center was located in a large midwestern city ( a Center for Excellence in Developmental Disabilities Education Research and Ser­ vice), and the preschool was located in a smaller midwestern city ( affiliated with the local public school district's Early Childhood Special Education Program). In both settings, transdisciplinary or in­ terdisciplinary teams offer assessments and provide a variety of diagnoses, in­ cluding autism. Table 1 provides demo­ graphic information for the sample of 11 professionals.

Families. Table 2 provides demo­ graphic information for the 17 family members. The majority of the partici­ pants were from affluent White families residing in one of the wealthiest counties in the country. Most participants worked outside of the home and had at least a college education. Although one partici­ pant was a single mother, a majority of the participants interviewed were mar­ ried. Two of the 15 mothers interviewed were the wives of the two fathers who participated in the study. Most family

Downloaded from foa.sagepub.com at FLORIDA INTERNATIONAL UNIV on June 16, 2015

32

members had a biological child between 2 and 5 years of age who had received a

diagnosis of autism, Asperger syndrome, or PDD NOS within the past year. Diag- noses were obtained from various set-

tings across the country and were not limited to the areas served by the profes- sionals who were interviewed. Two par- ents (both mothers) did not complete the study. One mother moved and did not leave a forwarding address or phone number. The second mother indicated

that she no longer chose to participate in the study due to time constraints. In- formation obtained from their first round

of interviews was included in the data

analysis.

Procedure

Recruitment of Participants. Pro- fessionals were individually approached by the first author in the work environ- ment and given an overview of the study. Professionals were asked to participate if they had experience diagnosing autism or other pervasive developmental disorders and if they were not physicians. All 11 professionals approached agreed to participate, and a time was set for the first interview.

Two approaches were used to recruit family members. A letter describing the study was sent by the medical center to 60 families of children who had recently received a diagnosis of autism or another pervasive developmental disorder. Only two parents agreed to participate using this method of recruitment. The first au-

thor recruited 15 family members by at- tending local parent support groups for families who have children with autism.

An overview of the study was presented to the parent support groups. Parents who were interested in participating and had a child who had recently received a diagnosis of autism or another pervasive developmental disorder provided their names and telephone numbers on a sign- up sheet. The researcher then called all

individuals who volunteered to partici- pate, answered any questions regarding the study, and set a meeting for the first interview. Reports and records were not collected regarding the child’s diagnosis

of autism. Parent report and the first au-

thor’s clinical judgment of autism were used instead.. , =-

Data Collection. Collection of the

data was organized into three phases based on Lincoln and Guba’s (1985) method of naturalistic inquiry. During Site Visit 1 (SV-1), the primary objective was to conduct unstructured interviews

with the participants. Questions for Pro- fessional SV-1 were developed based on recurring themes in the literature. Pro- fessionals in the field and family members of children with autism reviewed the

questions for relevancy. Questions for Parent SV-1 were based on themes in the

literature and information obtained dur-

ing Professional SV-1, and they were subjected to a review by professionals and family members. Site Visits 2 (SV-2) and 3 (SV-3) were conducted in order to obtain more specific information and to clarify information obtained in the previ- ous interview(s). Professionals partici- pated in three rounds of interviews and parents completed two rounds of inter- views. The sequence of interviews was as

follows: Professional SV-1, Parent SV-1, Professional SV-2, Parent SV-2, Profes- sional SV-3.

Most interviews with the professionals were conducted at the medical center or

the school site. A few interviews were

conducted in the professionals’ homes, and one was conducted at a neutral loca- tion due to scheduling difficulties. All family interviews were conducted at the participants’ homes. Interviews were recorded and lasted between 30 and

60 minutes. Prior to the first interview, professionals and families signed consent forms. To ensure confidentiality, all par- ticipants were assigned a code number that was written on the audiotape and on any notes taken during the interview. In- terviews were transcribed and unitized

using word processing software. Approx- imately half of the interviews were tran- scribed by the first author, and the re- maining interviews were transcribed by a professional transcriptionist. When the transcriptionist returned the interviews, the first author reviewed them for

accuracy.

Data Analysis. The first author con- tinuously analyzed the data using Lin- coln and Guba’s (1985) method of nat- uralistic inquiry. Data analysis followed each round of interviews. Initially, inter- views were reduced to individual units of

information that represented single ideas or thoughts. Units of information were assigned individual codes based on the following guidelines: a-b-c (a = phase of the study, b = person interviewed, c = in- dividual idea or thought from the inter- view ; see the Appendix). Each unit of information was then placed into a cate- gory that contained other units of simi-

lar information. Definitions describing the characteristics of the units placed in that category were developed. Categor- ies were further refined and/or altered based on information obtained in subse-

quent interviews. Collapsing the data into categories was a dynamic process. At least three units of similar information from

different sources provided triangulation for data included in each category. Tri-

angulation helped ensure reliability of data and information.

Other means of ensuring reliability in- cluded a methodological log and a mem- ber check. The methodological log doc- umented the date of the methodological change and an explanation of the reason the change was made. A five-person member check was conducted. Partici-

pants from the study included one mother, one professional from the school setting, and one professional from the medical center. The remaining two par- ticipants had experience sharing a diag- nosis of autism with families but did not

&dquo;

participate in the study. Member check participants were selected by the re- searcher based on their willingness and availability to participate in the member check activity. The first author furnished the member check participants with copies of the categorization system, the interpretation of the interviews, and the list of recommended practices. Member check participants were asked to inde-

pendently review the documents and provide the first author with feedback within 2 weeks. Comments provided by the member check participants were in- corporated into the final drafts of the in-

FOCUS ON AUTISM AND OTHER DEVELOPMENTAL DISABILITIES

32

members had a biological child between 2 and 5 years of age who had received a diagnosis of autism, Asperger syndrome, or PDD NOS within the past year. Diag­ noses were obtained from various set­ tings across the country and were not limited to the areas served by the profes­ sionals who were interviewed. Two par­ ents (both mothers) did not complete the study. One mother moved and did not leave a forwarding address or phone number. The second mother indicated that she no longer chose to participate in the study due to time constraints. In­ formation obtained from their first round of interviews was included in the data analysis.

Procedure

Recruitment of Participants. Pro­ fessionals were individually approached by the first author in the work environ­ ment and given an overview of the study. Professionals were asked to participate if they had experience diagnosing autism or other pervasive developmental disorders and if they were not physicians. All 11 professionals approached agreed to participate, and a time was set for the first interview.

Two approaches were used to recruit family members. A letter describing the study was sent by the medical center to 60 families of children who had recently received a diagnosis of autism or another pervasive developmental disorder. Only two parents agreed to participate using this method ofrecruitment. The first au­ thor recruited 15 family members by at­ tending local parent support groups for families who have children with autism. An overview of the study was presented to the parent support groups. Parents who were interested in participating and had a child who had recently received a diagnosis of autism or another pervasive developmental disorder provided their names and telephone numbers on a sign­ up sheet. The researcher then called all individuals who volunteered to partici­ pate, answered any questions regarding the study, and set a meeting for the first interview. Reports and records were not collected regarding the child's diagnosis

of autism. Parent report and the first au­ thor's clinical judgment of autism were used instead.

Data Collection. Collection of the data was organized into three phases based on Lincoln and Guba's (1985) method of naturalistic inquiry. During Site Visit 1 (SV-1 ), the primary objective was to conduct unstructured interviews with the participants. Questions for Pro­ fessional SV-1 were developed based on recurring themes in the literature. Pro­ fessionals in the field and family members of children with autism reviewed the questions for relevancy. Questions for Parent SV-1 were based on themes in the literature and information obtained dur­ ing Professional SV-1, and they were subjected to a review by professionals and family members. Site Visits 2 (SV-2) and 3 (SV-3) were conducted in order to obtain more specific information and to clarify information obtained in the previ­ ous interview( s). Professionals partici­ pated in three rounds of interviews and parents completed two rounds of inter­ views. The sequence of interviews was as follows: Professional SV-1, Parent SV-1, Professional SV-2, Parent SV-2, Profes­ sional SV-3.

Most interviews with the professionals were conducted at the medical center or the school site. A few interviews were conducted in the professionals' homes, and one was conducted at a neutral loca­ tion due to scheduling difficulties. All family interviews were conducted at the participants' homes. Interviews were recorded and lasted between 30 and 60 minutes. Prior to the first interview, professionals and families signed consent forms. To ensure confidentiality, all par­ ticipants were assigned a code number that was written on the audiotape and on any notes taken during the interview. In­ terviews were transcribed and unitized using word processing software. Approx­ imately half of the interviews were tran­ scribed by the first author, and the re­ maining interviews were transcribed by a professional transcriptionist. When the transcriptionist returned the interviews, the first author reviewed them for accuracy.

Data Analysis. The first author con­ tinuously analyzed the data using Lin­ coln and Guba's (1985) method of nat­ uralistic inquiry. Data analysis followed each round of interviews. Initially, inter­ views were reduced to individual units of information that represented single ideas or thoughts. Units of information were assigned individual codes based on the following guidelines: a-b-c (a = phase of the study, b = person interviewed, c = in­ dividual idea or thought from the inter­ view; see the Appendix). Each unit of information was then placed into a cate­ gory that contained other units of simi­ lar information. Definitions describing the characteristics of the units placed in that category were developed. Categor­ ies were further refined and/ or altered based on information obtained in subse­ quent interviews. Collapsing the data into categories was a dynamic process. At least three units of similar information from different sources provided triangulation for data included in each category. Tri­ angulation helped ensure reliability of data and information.

Other means of ensuring reliability in­ cluded a methodological log and a mem­ ber check. The methodological log doc­ umented the date of the methodological change and an explanation of the reason the change was made. A five-person member check was conducted. Partici­ pants from the study included one mother, one professional from the school setting, and one professional from the medical center. The remaining two par­ ticipants had experience sharing a diag­ nosis of autism with families but did not participate in the study. Member check participants were selected by the re­ searcher based on their willingness and availability to participate in the member check activity. The first author furnished the member check participants with copies of the categorization system, the interpretation of the interviews, and the list of recommended practices. Member check participants were asked to inde­ pendently review the documents and provide the first author with feedback within 2 weeks. Comments provided by the member check participants were in­ corporated into the final drafts of the in-

Downloaded from foa.sagepub.com at FLORIDA INTERNATIONAL UNIV on June 16, 2015

33

terpretation and the list of recommenda- tions for practice.

Resu Its

The 65 interviews with participants yielded 2,260 units of information that were combined into seven categories and subcategories. Table 3 provides the fre- quency of responses for each of the seven

categories. Family stories and miscella- neous comments are not discussed in this

article.

Perceptions of the Definition and Outcomes of Autism

Professionals described autism as a con- troversial disability’ that has a social stigma associated with it.2 Even though it is becoming more widely known,3 pro- fessionals still described autism as a

&dquo;touchy label,&dquo;4 a &dquo;sensitive subject,&dquo;5 and a &dquo;heavy-duty diagnosis.&dquo;6 Profes- sionals described characteristics of autism as variable7 and encompassing numerous areas of development, such as language skills,8 motor skills,9 social skills,io sen- sory modulation and learning difficul- ties.l2 Many parents described autism as a &dquo;death sentence&dquo;13 or &dquo;lifelong sen- tence.&dquo;14 Prior to receiving the diagno- sis, parents reported having an inaccurate understanding of the characteristics asso- ciated with autism.15 In fact, some par- ents thought that all people with autism were like the character in the movie Rain Man.16

Prior to the diagnosis, many parents suspected something different or unusual about their child However, only a few parents suspected that their child had autism. 18 Most had never heard of autism, and as a result, they did not sus- pect that their child had the disorder.19

Table 3

Frequency of Responses in Categories * ’

.

Some parents made excuses for the un- usual behaviors, such as their child’s &dquo;frenulum is too tight&dquo;20 or their child acts similar to a relative.21 Following the diagnosis, parents’ perceptions of their child ranged from feeling sorry for their child22 to being exceptionally proud of the child’s progress despite having autism.23

Parents and professionals presented different perspectives regarding out- comes for individuals with autism. Parents offered a positive outlook,24 whereas professionals typically described negative outcomes.25 In fact, many professionals indicated they would be devastated if their child was diagnosed with autism.26 Parents described their child as being &dquo;salvageable &dquo;27 and felt their child would &dquo;recover&dquo; from autism, 28 particularly if interventions were provided.29 How- ever, it is interesting to note that most families reported a negative perception of their child’s prognosis when the diagno- sis was first made.3o

Although many parents currently be- lieve that there is a positive future for their child,31 some anticipated a negative outcome32 and questioned if their child would always exhibit characteristics of autism.33 Others indicated it would be difficult to determine the exact outcome because the severity of the characteris- tics34 and intensity of the interventions affect the outcome.35

Professionals described children with autism as always having characteristics of autism, thus resulting in a lifelong dis- ability36 with no cure.3~ Although many professionals described negative out- comes,3g a few indicated that the out- comes varied.39 Positive outcomes might be more likely if the diagnosis and inter- ventions were implemented early40 and if the child exhibited less severe autistic be- haviors.41 Many professionals felt that parents had unrealistic views of the out- comes of autism,42 with most expecta- tions being too positive.43 Although only a few parents described

professionals as having a negative out- look on autism,44 even fewer felt that professionals had a positive outlook.45 Most parents believed that professionals did not have an awareness of the out-

--------------------• VOLUME 17, NUMBER 1, SPRING 2002 --------------------•

terpretation and the list of recommenda - tions for practice.

Results

The 65 interviews with part1c1pants yielded 2,260 units of information that were combined into seven categories and subcategories. Table 3 provides the fre­ quency of responses for each of the seven categories. Family stories and miscella­ neous comments are not discussed in this article.

Perceptions of the Definition and Outcomes of Autism

Professionals described autism as a con­ troversial disability1 that has a social stigma associated with it.2 Even though it is becoming more widely known,3 pro­ fessionals still described autism as a

"touchy label, "4 a "sensitive subject, "5

and a "heavy-duty diagnosis."6 Profes­ sionals described characteristics of autism as variable7 and encompassing numerous areas of development, such as language skills,8 motor skills,9 social skills, lO sen­ sory modulation, 11 and learning difficul­ ties.12 Many parents described autism as a "death sentence"13 or "lifelong sen­ tence. "14 Prior to receiving the diagno­ sis, parents reported having an inaccurate understanding of the characteristics asso­ ciated with autism. 15 In fact, some par­ ents thought that all people with autism were like the character in the movie Rain Man. 16

Prior to the diagnosis, many parents suspected something different or unusual about their child.17 However, only a few parents suspected that their child had autism. 18 Most had never heard of autism, and as a result, they did not sus­ pect that their child had the disorder. 19

Table 3 Frequency of Responses in Categories

Category name

Perceptions of the definition and outcomes of autism Perceptions of autism Educational vs. medical definitions of autism Outcomes of autism

How the Diagnosis of autism is presented to families How professionals prepare for the interpretative conference Professionals' perceptions of the interpretative conference Parents recollection of hearing the diagnosis of autism

A comprehensive view of important issues Who should give the diagnosis? When to give the diagnosis Hedging the diagnosis, Thoughts regarding giving scores Location of the child during the interpretative conference Hope Interventions Benefits of receiving a diagnosis

Reactions to giving and receiving a diagnosis of autism

Professionals' reactions to giving a diagnosis of autism to a family Professionals' perceptions of parents' reactions to a diagnosis of autism Families' reactions to the diagnosis of autism

Recommendations regarding how to improve the interpretatve conference

Families' stories

Miscellaneous

Frequency

81 34

147

59 218 202

86 47 30 10 54 60

147 42

349 187 94

267

127

19

Total= 2,260

33

Some parents made excuses for the un­ usual behaviors, such as their child's "frenulum is too tight"20 or their child acts similar to a relative.21 Following the diagnosis, parents' perceptions of their child ranged from feeling sorry for their child22 to being exceptionally proud of the child's progress despite having autism.23

Parents and professionals presented different perspectives regarding out­ comes for individuals with autism. Parents offered a positive outlook,24 whereas professionals typically described negative outcomes.25 In fact, many professionals indicated they would be devastated if their child was diagnosed with autism.26

Parents described their child as being "salvageable"27 and felt their child would "recover" from autism,28 particularly if interventions were provided.29 How­ ever, it is interesting to note that most families reported a negative perception of their child's prognosis when the diagno­ sis was first made.30

Although many parents currently be­ lieve that there is a positive future for their child, 31 some anticipated a negative outcome32 and questioned if their child would always exhibit characteristics of autism.33 Others indicated it would be difficult to determine the exact outcome because the severity of the characteris­ tics34 and intensity of the interventions affect the outcome. 35

Professionals described children with autism as always having characteristics of autism, thus resulting in a lifelong dis­ ability36 with no cure.37 Although many professionals described negative out­ comes, 38 a few indicated that the out­ comes varied. 39 Positive outcomes might be more likely if the diagnosis and inter­ ventions were implemented early40 and if the child exhibited less severe autistic be­ haviors. 41 Many professionals felt that parents had unrealistic views of the out­ comes of autism,42 with most expecta­ tions being too positive.43

Although only a few parents described professionals as having a negative out­ look on autism,44 even fewer felt that professionals had a positive outlook.45

Most parents believed that professionals did not have an awareness of the out-

Downloaded from foa.sagepub.com at FLORIDA INTERNATIONAL UNIV on June 16, 2015

34

come46 because they did not share any perceptions with families.47 One mother summed up her thoughts of the profes- sionals’ lack of awareness by stating,

The people that we went to, I think are very good at diagnosing, but I don’t think that they really thought about the out- comes. They were thinking about the di- agnosis right now and what this child had. ... [They] mentioned absolutely nothing about what we could look for down the road with him and I don’t even think that

was on their minds at that point.4g

Professionals and parents indicated that

professionals’ perceptions of the out- comes of autism affect how the profes- sional might discuss the prognosis.49

How the Diagnosis of Autism Is Presented to Families

Professionals reported completing vari- ous tasks when preparing to give the di- agnosis of autism to a family. Many pro- fessionals emphasized the necessity of a good assessment to evaluate the child’s functioning and behaviors5o and to get to know the family.51 Professionals often meet with other team members to dis- cuss the data52 and results.53 As a team, professionals also discuss how informa- tion should be shared,54 who should be present,55 and the placement of individ- uals around the room.56 Professionals take the time to arrange the room5~ and determine the location of the child dur-

ing the meeting.58 Many professionals, particularly those who diagnosed chil- dren in the school setting, reported con- sulting literature or research to obtain additional, updated information regard- ing autism.59 Professionals also prepare a packet of information on autism,6o complete essential paperwork,61 draw vi- sual aides,62 write a preliminary report,63 and develop recommendations64 prior to the interpretative conference. Profession- als complete these tasks regardless of whether the family suspects autism.65

In communicating the diagnosis of autism to a family, professionals attempt to use nonverbal communication skills,66 reflective listening, and simple lan- guage.67 When stating the actual diag- nosis of autism, professionals try to be

honest 68 without overwhelming parents with too much information. The profes- sionals thought that pointing out the child’s strengths69 was also important, especially at the end of the meeting, so that the family leaves on a positive note.70 In addition, some stated that &dquo;a little humor and a few smiles can help take the edge off.,,71 Professionals dis- cuss the DSM-IV criteria for autism or

explain how the child’s behavior meets the criteria for diagnosis.72 Educating the families about how autism differs from

the disability that they might have sus- pected was also considered to be impor- tant.~3 Professionals often share scores by presenting graphical pictures that dem- onstrate ranges.~4 Almost all professionals attempt to ob-

tain the parents’ level of understanding, feelings toward, and acceptance of the di- agnosis.~5 Professionals might ask ques- tions such as &dquo;Am I blowing you out of the water? Am I getting at what you need? Did you come here today with a specific purpose in mind, and have I ad- dressed that? &dquo;~6 Similarly, professionals try to answer all of the parents’ ques- tions. Professionals indicated that it is

typically easier to give a diagnosis when there is a suspicion of autism because they do not have to convince parents that their child meets the criteria. Instead, the professional can begin talking about treatment options.~g Adversely, the less knowledge families have about autism, the more time professionals spend ex- plaining the diagnosis

Following the diagnosis, professionals described how they might discuss the prognosis with families. Many profes- sionals inform parents that they cannot speculate on the prognosis.80 However, a few suggest improvement with appro- priate interventions,81 whereas others in- form parents that the child might always present with characteristics of autism.82 Professionals reported that the age of the child influences how the prognosis is dis- cussed. Many felt that the younger the child, the easier it is to discuss the po- tential improvement the child might make.83 With younger children, profes- sionals also discuss the necessity of a re- assessment to help determine the child’s long-term prognosis.84

When discussing interventions, only one professional indicated that she dis- cusses different treatment options.85 Professionals at the school setting often recommend that families pursue a med- ical evaluation.g6 Although professionals typically do not offer specific recommen- dations, many are concerned with how the families will access services in the

community Parents sought evaluations to obtain a

better understanding of their children.88 Most indicated that the evaluation was a

positive experience.g9 Most parents re- called that when relaying the diagnosis, professionals sent positive nonverbal messages,90 such as listening well; having relaxed body language; and showing humor, empathy, compassion, and a gen- uine interest in the child and family. The environment91 and a relaxed atmo- sphere92 also helped parents feel com- fortable when hearing the diagnosis. Some parents were discouraged by pro- fessionals’ nonverbal behaviors, includ- ing having a tense or rigid body posture, looking at a watch, eating lunch, or al- lowing numerous interruptions while giving the diagnosis to a family.93 Parents indicated that these behaviors conveyed a lack of interest in the discussion.94

Parents also indicated that the lan-

guage used to discuss the diagnosis was important. Although some parents felt that the diagnosis was not clearly stated,95 others felt it was stated too bluntly.96 In fact, one mother suggested that the di- agnosis was stated so bluntly that it was &dquo;kind of just thrown all at us. Like BOOM! We were not expecting it at all The DSM-IV criteria9g and the profes-

sionals’ own words were used to describe

autism.99 For the most part, parents felt that professionals attempted to use sim- ple and clear language100 to explain why the child had autism-101 Professionals often gave examples of the child’s behav- ior during the evaluation. 102 The child’s strengths were also discussed,lo3 which professionals considered reinforcing for parents.104 One mother even indicated that the professional praised her ability in handling her child’s behaviors.105 Some parents recalled that the professionals en- couraged them to ask questions. 106

FOCUS ON AUTISM AND OTHER DEVELOPMENTAL DISABILITIES ----------------

34

come46 because they did not share any perceptions with families.47 One mother summed up her thoughts of the profes­ sionals' lack of awareness by stating,

The people that we went to, I think are very good at diagnosing, but I don't think that they really thought about the out­ comes. They were thinking about the di­ agnosis right now and what this child had. ... [They] mentioned absolutely nothing about what we could look for down the road with him and I don't even think that was on their minds at that point.48

Professionals and parents indicated that professionals' perceptions of the out­ comes of autism affect how the profes­ sional might discuss the prognosis.49

How the Diagnosis of Autism Is Presented to Families

Professionals reported completing vari­ ous tasks when preparing to give the di­ agnosis of autism to a family. Many pro­ fessionals emphasized the necessity of a good assessment to evaluate the child's functioning and behaviors50 and to get to know the family. 51 Professionals often meet with other team members to dis­ cuss the data52 and results. 53 As a team, professionals also discuss how informa - tion should be shared, 54 who should be present,55 and the placement of individ­ uals around the room. 56 Professionals take the time to arrange the room57 and determine the location of the child dur­ ing the meeting. 58 Many professionals, particularly those who diagnosed chil­ dren in the school setting, reported con­ sulting literature or research to obtain additional, updated information regard­ ing autism.59 Professionals also prepare a packet of information on autism,60

complete essential paperwork,61 draw vi­ sual aides,62 write a preliminary report,63

and develop recommendations64 prior to the interpretative conference. Profession­ als complete these tasks regardless of whether the family suspects autism.65

In communicating the diagnosis of autism to a family, professionals attempt to use nonverbal communication skills,66

reflective listening, and simple lan­ guage.67 When stating the actual diag­ nosis of autism, professionals try to be

honest68 without overwhelming parents with too much information. The profes­ sionals thought that pointing out the child's strengths69 was also important, especially at the end of the meeting, so that the family leaves on a positive note.7° In addition, some stated that "a little humor and a few smiles can help take the edge off. "71 Professionals dis­ cuss the DSM-IV criteria for autism or explain how the child's behavior meets the criteria for diagnosis.72 Educating the families about how autism differs from the disability that they might have sus­ pected was also considered to be impor­ tant. 73 Professionals often share scores by presenting graphical pictures that dem­ onstrate ranges. 74

Almost all professionals attempt to ob­ tain the parents' level of understanding, feelings toward, and acceptance of the di­ agnosis. 75 Professionals might ask ques­ tions such as "Am I blowing you out of the water? Am I getting at what you need? Did you come here today with a specific purpose in mind, and have I ad­ dressed that?"76 Similarly, professionals try to answer all of the parents' ques­ tions.77 Professionals indicated that it is typically easier to give a diagnosis when there is a suspicion of autism because they do not have to convince parents that their child meets the criteria. Instead, the professional can begin talking about treatment options.78 Adversely, the less knowledge families have about autism, the more time professionals spend ex­ plaining the diagnosis. 79

Following the diagnosis, professionals described how they might discuss the prognosis with families. Many profes­ sionals inform parents that they cannot speculate on the prognosis.80 However, a few suggest improvement with appro­ priate interventions,81 whereas others in­ form parents that the child might always present with characteristics of autism.82

Professionals reported that the age of the child influences how the prognosis is dis­ cussed. Many felt that the younger the child, the easier it is to discuss the po­ tential improvement the child might make.83 With younger children, profes­ sionals also discuss the necessity of a re­ assessment to help determine the child's long-term prognosis.84

When discussing interventions, only one professional indicated that she dis­ cusses different treatment options. 85

Professionals at the school setting often recommend that families pursue a med­ ical evaluation.86 Although professionals typically do not offer specific recommen­ dations, many are concerned with how the families will access services in the community. 87

Parents sought evaluations to obtain a better understanding of their children. 88

Most indicated that the evaluation was a positive experience.89 Most parents re­ called that when relaying the diagnosis, professionals sent positive nonverbal messages,90 such as listening well; having relaxed body language; and showing humor, empathy, compassion, and a gen­ uine interest in the child and family. The environment91 and a relaxed atmo­ sphere92 also helped parents feel com­ fortable when hearing the diagnosis. Some parents were discouraged by pro­ fessionals' nonverbal behaviors, includ­ ing having a tense or rigid body posture, looking at a watch, eating lunch, or al­ lowing numerous interruptions while giving the diagnosis to a family.93 Parents indicated that these behaviors conveyed a lack of interest in the discussion.94

Parents also indicated that the lan­ guage used to discuss the diagnosis was important. Although some parents felt that the diagnosis was not clearly stated,95

others felt it was stated too bluntly. 96 In fact, one mother suggested that the di­ agnosis was stated so bluntly that it was "kind of just thrown all at us. Like BOOM! We were not expecting it at all. ,,97

The DSM-IV criteria98 and the profes­ sionals' own words were used to describe autism.99 For the most part, parents felt that professionals attempted to use sim­ ple and clear language100 to explain why the child had autism. 101 Professionals often gave examples of the child's behav­ ior during the evaluation. 102 The child's strengths were also discussed, 103 which professionals considered reinforcing for parents. 104 One mother even indicated that the professional praised her ability in handling her child's behaviors. 105 Some parents recalled that the professionals en­ couraged them to ask questions. 106

Downloaded from foa.sagepub.com at FLORIDA INTERNATIONAL UNIV on June 16, 2015

35

Other parents reported having a dis- cussion with the professionals about their child’s prognosis. Only a few parents re- ported hearing a positive prognosis for their child;107 more parents indicated that they recalled a negative progno- sis.lo8 Although some parents recalled that recommendations were not of-

fered,109 many indicated that recom- mendations and resources were dis- cussed.110 Some recommendations, such as behavioral techniques, were even modeled.111 Packets of information on autism were frequently distributed, but some parents felt that the information was too technica1,112 inaccurate,113 and not comprehensive.114 One mother even described the reading materials as &dquo;two inches of crud to read.&dquo;115 Yet, others felt the reading materials were useffil. 116 Parents were pleased with the quality of the written reports.117

Who Should Give the Diagnosis? Parents recalled that psychologists typi- cally provided the diagnosis of autism 118

although a variety of other professionals, including speech pathologists, physical therapists, occupational therapists, pedi- atricians, and nurses,119 were represented at the interpretative meeting. Profession- als from both sites reported that the psy- chologist on the team usually shared the diagnosis.l2o Many professionals inter- viewed from the school setting, including the psychologist, indicated that giving the diagnosis of autism was not their re- sponsibility but that of a medical profes- sional These school-based profes- sionals stated that they preferred not to give the diagnosis because autism is a medical diagnosis, and therefore not a di- agnosis that they should make. However, many stated that a team of professionals was capable of making a diagnosis,122 particularly if a pediatrician was pres- ent.123 Nonmedical professionals at the medical center routinely give a diagnosis of autism to families.

Some parents reported that the title of the professional did not have an effect on their acceptance of the diagnosis,124 but others indicated that it did influence their

reaction.125 These parents believed that

the title implies that professionals possess expertise in the area of autism. Families and professionals suggest that profes- sionals must have prior experience work- ing with children with autism and their families. These prior experiences should include knowledge of children126 (par- ticularly children with autism),12~ skill in administering tests to children with autism,128 and practice interpreting re- sults with families.129

Personality characteristics described as important when informing families that their child has autism include compas- sionl3O and honesty.131 Professionals mentioned that having the ability to un- derstand how well the families are ac-

cepting the diagnosis of autism is also es- sentia1.132

When to Give the Diagnosis Some professionals drop hints through- out the course of the evaluation133 in order to raise the level of parents’ aware- ness regarding unusual behaviors. Most wait until the entire evaluation is over in

order to decrease the likelihood of mis-

perception by parents. 134 During the in- terpretative conference, all professionals have tried offering the diagnosis first, fol- lowed by a rationale as to why the child meets the criteria.135 Professionals have also described the child’s behaviors first

and then stated the diagnosis. Although some professionals preferred to give the diagnosis first,136 others thought it was useful to talk about the child’s behaviors and then tie it together with a diagnosis in the end.l3~ The determination of when to state the diagnosis is dependent upon the family.138 Factors that profes- sionals consider are whether the parents suspect autism,139 whether the parents are ready to accept the diagnosis,140 and whether the family indicates that they want to know the diagnosis up front.141

Hedging the Diagnosis Many parents reported that professionals did not clearly state the diagnosis of autism.142 Professionals offered various reasons for why they would hedge a di- agnosis. Overwhelmingly, professionals reported that they consider the emotions

of the family and how much information the family can handle.143 Professionals also stated that for very young children, the diagnosis is not as important as ob- taining the appropriate services.144 Pro- fessionals also attributed their hesitancy to a fear of giving the diagnosis145 or a lack of confidence.146 A lack of training on autism,l4~ a poor evaluation,148 or even the young age of the child149 can result in fear or feelings of incompetence.

Thoughts Regarding Giving Scores

Most participants indicated that hearing scores obtained during the evaluation was helpfiil.150 One father stated that scores are helpful because &dquo;knowledge is power.&dquo;151 Similarly, a professional of- fered that sharing scores is important be- cause &dquo;if your bottom line [score] is going to call them a label, then they have a right to know why.&dquo;152 However, another pro- fessional questioned the appropriateness of providing scores because &dquo;it’s confus- ing and 2 days later it is not going to mean diddley.&dquo;153

Location of the Child During the Interpretative Conference

Although some children were out of the room,154 most parents recalled their child being in the room155 when the di- agnosis was given. Parents who did not mind their child in the room156 sug- gested the child was too young to com- prehend the discussion.l5~ Yet, some parents preferred their child be out of the room158 because he or she might under- stand what was being discussed. 159 In ad- dition, parents need time to grieve with- out having to worry about their child. One mother explained why she preferred her child out of the room:

Definitely it was better not to have him there because that’s a real big blow to give to parents. They need to deal with their emotions, or at least in our case, we needed to deal with our emotions and kind of get figured out how we were going to think about this and how we were going to deal with it. We needed time.l6o

-------------------- VOLUME 17, NUMBER 1, SPRING 2002 --------------------

Other parents reported having a dis­ cussion with the professionals about their child's prognosis. Only a few parents re­ ported hearing a positive prognosis for their child; 107 more parents indicated that they recalled a negative progno­ sis.108 Although some parents recalled that recommendations were not of­ fered, 109 many indicated that recom­ mendations and resources were dis­ cussed.110 Some recommendations, such as behavioral techniques, were even modeled. 111 Packets of information on autism were frequently distributed, but some parents felt that the information was too technical, 112 inaccurate, 113 and not comprehensive.114 One mother even described the reading materials as "two inches of crud to read." 115 Yet, others felt the reading materials were useful. 116

Parents were pleased with the quality of the written report. 117

Who Should Give the Diagnosis?

Parents recalled that psychologists typi­ cally provided the diagnosis of autism, 118

although a variety of other professionals, including speech pathologists, physical therapists, occupational therapists, pedi­ atricians, and nurses, 119 were represented at the interpretative meeting. Profession­ als from both sites reported that the psy­ chologist on the team usually shared the diagnosis. 120 Many professionals inter­ viewed from the school setting, including the psychologist, indicated that giving the diagnosis of autism was not their re­ sponsibility but that of a medical profes­ sional.121 These school-based profes­ sionals stated that they preferred not to give the diagnosis because autism is a medical diagnosis, and therefore not a di­ agnosis that they should make. However, many stated that a team of professionals was capable of making a diagnosis, 122

particularly if a pediatrician was pres­ ent.123 Nonmedical professionals at the medical center routinely give a diagnosis of autism to families.

Some parents reported that the title of the professional did not have an effect on their acceptance of the diagnosis, 124 but others indicated that it did influence their reaction. 125 These parents believed that

the title implies that professionals possess expertise in the area of autism. Families and professionals suggest that profes­ sionals must have prior experience work­ ing with children with autism and their families. These prior experiences should include knowledge of children 126 (par­ ticularly children with autism), 127 skill in administering tests to children with autism, 128 and practice interpreting re­ sults with families. 129

Personality characteristics described as important when informing families that their child has autism include compas­ sion 130 and honesty. 131 Professionals mentioned that having the ability to un­ derstand how well the families are ac­ cepting the diagnosis of autism is also es­ sential.132

When to Give the Diagnosis

Some professionals drop hints through­ out the course of the evaluation133 in order to raise the level of parents' aware­ ness regarding unusual behaviors. Most wait until the entire evaluation is over in order to decrease the likelihood of mis­ perception by parents. 134 During the in­ terpretative conference, all professionals have tried offering the diagnosis first, fol­ lowed by a rationale as to why the child meets the criteria.135 Professionals have also described the child's behaviors first and then stated the diagnosis. Although some professionals preferred to give the diagnosis first, 136 others thought it was useful to talk about the child's behaviors and then tie it together with a diagnosis in the end.137 The determination of when to state the diagnosis is dependent upon the family. 138 Factors that profes­ sionals consider are whether the parents suspect autism, 139 whether the parents are ready to accept the diagnosis, 140 and whether the family indicates that they want to know the diagnosis up front. 141

Hedging the Diagnosis

Many parents reported that professionals did not clearly state the diagnosis of autism. 142 Professionals offered various reasons for why they would hedge a di­ agnosis. Overwhelmingly, professionals reported that they consider the emotions

35

of the family and how much information the family can handle. 143 Professionals also stated that for very young children, the diagnosis is not as important as ob­ taining the appropriate services.144 Pro­ fessionals also attributed their hesitancy to a fear of giving the diagnosis145 or a lack of confidence. 146 A lack of training on autism, 147 a poor evaluation, 148 or even the young age of the child149 can result in fear or feelings ofincompetence.

Thoughts Regarding Giving Scores

Most participants indicated that hearing scores obtained during the evaluation was helpful. 150 One father stated that scores are helpful because "knowledge is power."151 Similarly, a professional of­ fered that sharing scores is important be­ cause "if your bottom line [score] is going to call them a label, then they have a right to knowwhy." 152 However, another pro­ fessional questioned the appropriateness of providing scores because "it's confus­ ing and 2 days later it is not going to mean diddley." 153

Location of the Child During the Interpretative Conference

Although some children were out of the room, 154 most parents recalled their child being in the room155 when the di­ agnosis was given. Parents who did not mind their child in the room156 sug­ gested the child was too young to com­ prehend the discussion. 157 Yet, some parents preferred their child be out of the room158 because he or she might under­ stand what was being discussed. 159 In ad­ dition, parents need time to grieve with­ out having to worry about their child. One mother explained why she preferred her child out of the room:

Definitely it was better not to have him there because that's a real big blow to give to parents. They need to deal with their emotions, or at least in our case, we needed to deal with our emotions and kind of get figured out how we were going to think about this and how we were going to deal with it. We needed time.160

Downloaded from foa.sagepub.com at FLORIDA INTERNATIONAL UNIV on June 16, 2015

36

Like parents, some professionals pre- ferred the child in the room,161 and oth- ers preferred the child out of the room when parents were told the diagnosis of autism. Some professionals thought that children in the room, particularly young children with autism, do not understand the conversation162 and can provide com- fort for parents.163 However, others were concerned children might understand164 or distract parents by misbehaving.165

Hope Many parents cried when discussing the need for hope.166 Hope provides parents with a sense of optimism for the fu- ture.l6~ One mother said hope was &dquo;why we wake up everyday. There is nothing that any of us cannot go through if we believe there is hope for progress.&dquo;168 Another mother stated that hope is the &dquo;carrot in front of our face.&dquo;169 Parents suggested that hope can be provided by being positive, describing the child’s potential for improvements discussing the positive effect of early interven- tion,171 and providing examples of suc- cess stories.l~2

z

Interventions

Some parents were pleased with available interventions for individuals with au-

tism,l73 but a majority expressed dis- pleasure.l~4 Similarly, professionals also described positivel75 and negativel76 perceptions of interventions. Although most families recalled receiving general recommendations, they would have pre- ferred receiving information about spe- cific interventions 177 because such infor- mation would have assisted them in

accessing services178 and would have provided a sense of direction.l~9 Families speculated that specific recommenda- tions were not offered because of pro- fessionals’ lack of knowledge 180 and con- cern for legal issues. 181 Professionals stated that the child’s service providers should develop appropriate interventions be- cause they have a better rapport and un- derstanding of the child.182 A speech pathologist stated that

I tend to be a lot more general because even though I’ve spent time evaluating the

child, I really haven’t got a chance to get in and manipulate things to see how they respond. I think when you really get in and you get down and dirty on the floor, I think that’s when you start to see more of

the individualness and more of &dquo;that’s not

going to work&dquo; because you’re actually try- ing.183

z

Benefits of Receiving a Diagnosis .

Parents said that relief is a benefit of a di-

agnosis because they no longer feel they are to blame184 and they have an expla- nation for themselves185 and others186 as to why their child exhibits unusual be- haviors. The diagnosis serves as a &dquo;wake- up call because you realize that you just don’t have a child that’s, like, late talking or slow developing or whatever. You realize that you’ve got to do some- thing.&dquo;18~ A diagnosis of autism assists parents in obtaining informationl88 and access to services.189 Specifically, an early diagnosis is necessary to increase the like- lihood of progress.

190

Reactions to Giving and . Receiving a Diagnosis of .. , Autism

Professionals stated that they experience emotional and physiological changes when giving the news of autism to par- ents. Most emotions are negative, in- cluding feeling sad,191 wanting to cry,192 feeling empathy for families,193 and having doubts about the diagnosis of autism.194 The most common and over-

whelming emotion expressed is nervous- ness,195 particularly when professionals are uncertain of parents’ reactions.196 Professionals also described experiencing physical changes, such as nausea,l9~ in- creases in body temperaturel98 or heart rate,199 thirst,200 headache,201 and tired- ness, when informing families that their child has autism.2o2 Speech patterns are altered due to heavy breathing,203 stut- tering,204 or word retrieval difficul- ties.205 These emotional and physiologi- cal changes are often so overwhelming that professionals dread the interpreta- tive conference.206 These changes are often intensified when the family does

not suspect autism.207 Parents under- stand that giving a diagnosis is difficult for professionals. 208

Professionals’ physiological and emo- tional reactions can have either a positive or negative effect on the presentation of the diagnosis. The positive effect is that empathy and sensitivity toward parents is increased.209 Negative effects include rushing, 210 failing to give relevant infor- mation,211 jumbling words,212 present- ing an unclear diagnosis,213 and using poor eye contact.214 These reactions may reinforce parents’ doubts in the pro- fessionals’ ability to make a diagnosis of autism2l and cause parents to become

upset or uncomfortable.216 In fact, a so- cial worker felt that parents &dquo;can sense the tension in our voices and I think they react to it. They know that something is wrong with their child just by our be- havior. Our anxiety brings out their own anxiety. &dquo;217

Professionals reported that their emo- tional and physical reactions did not af- fect their discussion of the prognosis or interventions.219 In fact, professionals reported that discussing the prognosis was easier than presenting the diagno- sis,22o especially if a thorough discussion of the diagnosis was presented.221

Overall, professionals believe that par- ents’ main positive reaction is relief 222 Most reactions to the diagnosis of autism are negative, such as denial, 223 emotion- ality,224 misperception of the diagno- sis,22s and no longer listening to the professional.226 Parents also react by be- coming angry with or disliking the pro- fessional.227 An occupational therapist stated that parents often &dquo;hate the mes-

senger&dquo;228 because he or she is telling the family something they do not want to hear. Many professionals admitted they would have a negative reaction if their child was diagnosed with autism.229

Most professionals described three groups of parents based on their prior knowledge of the diagnosis: parents who suspect autism,230 parents who suspect delays but not autism,231 and parents who do not recognize any problem.232 Parents’ reactions to the diagnosis vary and are dependent on the degree to which they suspect autism.233 Parents

FOCUS ON AUTISM AND OTHER DEVELOPMENTAL DISABILITIES

36

Like parents, some professionals pre­ ferred the child in the room, 161 and oth­ ers preferred the child out of the room when parents were told the diagnosis of autism. Some professionals thought that children in the room, particularly young children with autism, do not understand the conversation162 and can provide com­ fort for parents. 163 However, others were concerned children might understand164

or distract parents by misbehaving. 165

Hope Many parents cried when discussing the need for hope. 166 Hope provides parents with a sense of optimism for the fu­ ture.167 One mother said hope was "why we wake up everyday. There is nothing that any of us cannot go through if we believe there is hope for progress."168

Another mother stated that hope is the "carrot in front of our face." 169 Parents suggested that hope can be provided by being positive, describing the child's potential for improvement, 170 discussing the positive effect of early interven­ tion, 171 and providing examples of suc­ cess stories. 172

Interventions Some parents were pleased with available interventions for individuals with au­ tism, 173 but a majority expressed dis­ pleasure.174 Similarly, professionals also described positive175 and negative 176

perceptions of interventions. Although most families recalled receiving general recommendations, they would have pre­ ferred receiving information about spe­ cific interventions177 because such infor­ mation would have assisted them in accessing services178 and would have provided a sense of direction. 179 Families speculated that specific recommenda­ tions were not offered because of pro­ fessionals' lack ofknowledge180 and con­ cern for legal issues.181 Professionals stated that the child's service providers should develop appropriate interventions be­ cause they have a better rapport and un­ derstanding of the child. 182 A speech pathologist stated that

I tend to be a lot more general because even though I've spent time evaluating the

child, I really haven't got a chance to get in and manipulate things to see how they respond. I think when you really get in and you get down and dirty on the floor, I think that's when you start to see more of the individualness and more of "that's not going to work" because you're actually try­ ing_ 183

Benefits of Receiving a Diagnosis

Parents said that reliefis a benefit of a di­ agnosis because they no longer feel they are to blame184 and they have an expla­ nation for themselves185 and others186 as to why their child exhibits unusual be­ haviors. The diagnosis serves as a "wake­ up call because you realize that you just don't have a child that's, like, late talking or slow developing or whatever. You realize that you've got to do some­ thing. "187 A diagnosis of autism assists parents in obtaining information188 and access to services. 189 Specifically, an early diagnosis is necessary to increase the like­ lihood of progress. 190

Reactions to Giving and Receiving a Diagnosis of Autism

Professionals stated that they experience emotional and physiological changes when giving the news of autism to par­ ents. Most emotions are negative, in­ cluding feeling sad, 191 wanting to cry, 192

feeling empathy for families, 193 and having doubts about the diagnosis of autism. 194 The most common and over­ whelming emotion expressed is nervous­ ness, 195 particularly when professionals are uncertain of parents' reactions. 196

Professionals also described experiencing physical changes, such as nausea, 197 in­ creases in body temperature198 or heart rate, 199 thirst,200 headache,201 and tired­ ness, when informing families that their child has autism.202 Speech patterns are altered due to heavy breathing,203 stut­ tering,204 or word retrieval difficul­ ties.205 These emotional and physiologi­ cal changes are often so overwhelming that professionals dread the interpreta­ tive conference.206 These changes are often intensified when the family does

not suspect autism.207 Parents under­ stand that giving a diagnosis is difficult for professionals.208

Professionals' physiological and emo­ tional reactions can have either a positive or negative effect on the presentation of the diagnosis. The positive effect is that empathy and sensitivity toward parents is increased.209 Negative effects include rushing,210 failing to give relevant infor­ mation,211 jumbling words,212 present­ ing an unclear diagnosis,213 and using poor eye contact.214 These reactions may reinforce parents' doubts in the pro­ fessionals' ability to make a diagnosis of autism215 and cause parents to become upset or uncomfortable.216 In fact, a so­ cial worker felt that parents "can sense the tension in our voices and I think they react to it. They know that something is wrong with their child just by our be­ havior. Our anxiety brings out their own anxiety. "217

Professionals reported that their emo­ tional and physical reactions did not af­ fect their discussion of the prognosis218

or interventions.219 In fact, professionals reported that discussing the prognosis was easier than presenting the diagno­ sis, 220 especially if a thorough discussion of the diagnosis was presented.221

Overall, professionals believe that par­ ents' main positive reaction is relief.222

Most reactions to the diagnosis of autism are negative, such as denial,223 emotion­ ality,224 misperception of the diagno­ sis,225 and no longer listening to the professional. 226 Parents also react by be­ coming angry with or disliking the pro­ fessional. 227 An occupational therapist stated that parents often "hate the mes­ senger"228 because he or she is telling the family something they do not want to hear. Many professionals admitted they would have a negative reaction if their child was diagnosed with autism.229

Most professionals described three groups of parents based on their prior knowledge of the diagnosis: parents who suspect autism,230 parents who suspect delays but not autism,231 and parents who do not recognize any problem.232

Parents' reactions to the diagnosis vary and are dependent on the degree to which they suspect autism. 233 Parents

Downloaded from foa.sagepub.com at FLORIDA INTERNATIONAL UNIV on June 16, 2015

37

who do not recognize a problem often have the most negative reactions.234 Par- ents suspecting a problem other than autism have a mixture of positive and negative reactions, including relief,235 re- ceptiveness,236 denial,237 anger,238 dev- astation,239 and a feeling of being over- whelmed.240 Parents suspecting autism typically have positive reactions,241 such as relief,242 acceptance of the diagno- sis,243 and receptiveness to additional in- formation.244

Professionals attribute some parents’ failure to accept the diagnosis to poor understanding of typical child develop- ment,245 incorrect and negative percep- tions of autism,246 characteristics of the family,247 and concern about the reac- tions of the extended family.248 In addi- tion, some parents continue to deny any problems,249 and as a result they make excuses for their child’s unusual be-

haviors.250 The child’s age at the time of diagnosis is related to acceptance251 be- cause parents have difficulty differentiat- ing between typical and atypical behavior in young children.252 One professional suggested that parents of younger chil- dren &dquo;still envision this perfect child. There has not been enough time for them to realize how abnormal the be- havior is. We burst their picture of their child.&dquo;253 When parents suspect a dis-

ability other than autism, the conference can be difficult because parents have a

&dquo;preconceived notion of the reasons for their child’s behaviors. &dquo;254 Some profes- sionals indicated that parents from a high socioeconomic status and with a high level

of education often have difficulty accept- ing a diagnosis of autism255 because

Most of those [low SES] people didn’t ex- pect much in the beginning, but the peo- ple who just break down and sob and shake and just can’t get over it are the people who had such high expectations to begin with.... So I think the higher functioning people just find it a tremendous assault to their egos.256

Parents reacted to the diagnosis by crying;257 expressing relief,258 surprise,259 devastation,26o or helplessness;261 and wanting additional information about autism.262 Some parents did not believe the diagnosis,263 and some even became angry264 or questioned the professional’s ability.265 Many parents were concerned about how the other parent, extended

family, and friends would accept the di- agnosis.266 Suspecting autism decreased the likelihood of shock.267 Many parents and professionals said family members went through a grieving process after hearing the diagnosis.268 Regardless of their reaction, families did not feel that a diagnosis of autism influenced their in- teractions with their child.269

Parental reaction to the diagnosis of autism varied. Although some families had a negative reaction,270 others were hopeful because early intervention could be initiated and changes could be made.271 One father summed up his op- timism nicely:

It was so clear to us that there was some-

thing wrong. We could not deny that he

Table 4 Quick Reference of Recommendations for Practices When Informing

Families Their Child Has Autism

was acting and developing inappropriately. It seemed out of the ordinary compared to our experience with our other son and with other children that we had met. What was

even better was we could get some early in- tervention and get started while he was still

young. We were so glad to get it and get an early jump on this. I have heard from many families that they got their diagnosis when their child was older and they lost so much critical time for interventions. 272

Discussion

Based on the findings of this study, rec- ommendations for practice were devel- oped that professionals may find useful in sharing a diagnosis of autism with a fam- ily. Table 4 offers a quick reference to the recommendations.

Recommendations for Practice

Become Knowledgeable About Au- tism. Professionals need to be knowl-

edgeable about the diagnosis, prognosis, and treatment of autism. Knowledge al- lows professionals to feel more confident in their abilities and decreases the likeli-

hood that the parent will question the professional’s ability. Increased aware- ness of the diagnosis and treatments for autism may result in an earlier diagnosis, which, in turn, will allow the child to re- ceive services at a younger age. Profes-

sionals’ expertise in the area of autism makes parents more confident of the vi-

ability of the diagnosis and the recom- mendations for interventions.

Establish a Family-Friendly Setting. Families need to feel comfortable, be- cause the interpretative conference can be stressful for both professionals and parents. The room should include com- fortable chairs or tables. Families and

professionals should be seated as an inte- grated unit, and provisions must be made for both the child and the parents to be comfortable. Having tissues nearby does not disrupt the flow of the meeting if par- ents become upset.

Understand the Family’s Needs. Learning that a child has autism often has

--------------------- VOLUME 17, NUMBER 1, SPRING 2002 ---------------------

who do not recognize a problem often have the most negative reactions,234 Par­ ents suspecting a problem other than autism have a mixture of positive and negative reactions, including relief,235 re­ ceptiveness,236 denial,237 anger,238 dev­ astation,239 and a feeling of being over­ whelmed.240 Parents suspecting autism typically have positive reactions,241 such as relief,242 acceptance of the diagno­ sis,243 and receptiveness to additional in­ formation. 244

Professionals attribute some parents' failure to accept the diagnosis to poor understanding of typical child develop­ ment, 245 incorrect and negative percep­ tions of autism,246 characteristics of the family,247 and concern about the reac­ tions of the extended family. 248 In addi­ tion, some parents continue to deny any problems,249 and as a result they make excuses for their child's unusual be­ haviors.250 The child's age at the time of diagnosis is related to acceptance251 be­ cause parents have difficulty differentiat­ ing between typical and atypical behavior in young children.252 One professional suggested that parents of younger chil­ dren "still envision this perfect child, There has not been enough time for them to realize how abnormal the be­ havior is. We burst their picture of their child."253 When parents suspect a dis­ ability other than autism, the conference can be difficult because parents have a "preconceived notion of the reasons for their child's behaviors. "254 Some profes­ sionals indicated that parents from a high socioeconomic status and with a high level

of education often have difficulty accept­ ing a diagnosis of autism255 because

Most of those [low SES] people didn't ex­ pect much in the beginning, but the peo­ ple who just break down and sob and shake and just can't get over it are the people who had such high expectations to begin with .... So I think the higher functioning people just find it a tremendous assault to their egos. 256

Parents reacted to the diagnosis by crying;257 expressing relief,258 surprise,259

devastation,260 or helplessness;261 and wanting additional information about autism,262 Some parents did not believe the diagnosis,263 and some even became angry264 or questioned the professional's ability,265 Many parents were concerned about how the other parent, extended family, and friends would accept the di­ agnosis,266 Suspecting autism decreased the likelihood of shock.267 Many parents and professionals said family members went through a grieving process after hearing the diagnosis.268 Regardless of their reaction, families did not feel that a diagnosis of autism influenced their in­ teractions with their child. 269

Parental reaction to the diagnosis of autism varied. Although some families had a negative reaction,270 others were hopeful because early intervention could be initiated and changes could be made.271 One father summed up his op­ timism nicely:

It was so clear to us that there was some­ thing wrong. We could not deny that he

Table 4

1 2

3

4

5 6 7

8

9

Quick Reference of Recommendations for Practices When Informing Families Their Child Has Autism

Become knowledgeable about autism

Establish a family-friendly setting

Understand the family's needs

Use good communication skills

Provide a list of resources and interventions

Provide follow-up

Discuss prognosis

Provide hope

Recognize that it is not unusual for professionals to react to giving the diagnosis

of autism

37

was acting and developing inappropriately. It seemed out of the ordinary compared to our experience with our other son and with other children that we had met. What was even better was we could get some early in - tervention and get started while he was still young, We were so glad to get it and get an early jump on this. I have heard from many families that they got their diagnosis when their child was older and they lost so much critical time for interventions,272

Discussion

Based on the findings of this study, rec­ ommendations for practice were devel­ oped that professionals may find useful in sharing a diagnosis of autism with a fam­ ily, Table 4 offers a quick reference to the recommendations.

Recommendations for Practice

Become Knowledgeable About Au­ tism. Professionals need to be knowl­ edgeable about the diagnosis, prognosis, and treatment of autism. Knowledge al­ lows professionals to feel more confident in their abilities and decreases the likeli­ hood that the parent will question the professional's ability. Increased aware­ ness of the diagnosis and treatments for autism may result in an earlier diagnosis, which, in turn, will allow the child to re­ ceive services at a younger age. Profes­ sionals' expertise in the area of autism makes parents more confident of the vi­ ability of the diagnosis and the recom­ mendations for interventions.

Establish a Family-Friendly Setting. Families need to feel comfortable, be­ cause the interpretative conference can be stressful for both professionals and parents. The room should include com­ fortable chairs or tables. Families and professionals should be seated as an inte­ grated unit, and provisions must be made for both the child and the parents to be comfortable. Having tissues nearby does not disrupt the flow of the meeting if par­ ents become upset.

Understand the Family's Needs. Learning that a child has autism often has

Downloaded from foa.sagepub.com at FLORIDA INTERNATIONAL UNIV on June 16, 2015

38

a profound effect on the family (Selig- man & Darling, 1997; Turnbull & Turn- bull, 1997 ; Webber, Simpson, & Bentley, 2000). Professionals must provide infor- mation about autism that the family un- derstands and that allows the family to seek appropriate interventions. Each family is unique in their needs and per- ceptions of autism. It is essential that pro- fessionals obtain an understanding of these needs and perceptions so that they can tailor the interpretative conference to the family. This information influences how the diagnosis is presented, the type of information shared, and the order in which the information is shared. Impor- tant areas to consider are prior knowl- edge of autism, diagnosis first versus overview first, location of the child, and sharing scores. It is essential that profes- sionals determine what information the

family would find most useful.

Use Good Communication Skills. The diagnosis should be presented clearly in language that parents under- stand. In addition, professionals should use reflective listening and other nonver- bal communication skills to put parents at ease. The interpretative conference should not be rushed and should be as relaxed as possible.

Provide a List of Resources and In- terventions. Providing a list of inter- ventions and community resources is es- sential because it assists families in

quickly obtaining access to services. Given the variety of interventions avail- able for children with autism, it is not surprising that parents want professionals to help them locate appropriate treat- ments for their child. Resources should be accurate and include phone numbers or the name of the individual(s) to con- tact. Although many professionals warn against giving specific interventions, rec- ommended treatments should be as spe- cific as possible based on the information obtained during the evaluation. Addi- tionally, prioritizing interventions is use- ful because it helps families determine which interventions are the most impor- tant to pursue.

Provide Follow-up. The importance of follow-up with families cannot be overemphasized. Parents may be so over- whelmed at the interpretative conference that they stop listening to the profes- sionals. As a result, they miss important information. Similarly, after parents have had the opportunity to consider the di- agnosis and recommendations, they may have additional questions. Professionals can provide follow-up with a phone call or letter a few weeks after the interpreta- tive conference. When providing follow- up, professionals should help families by answering questions, providing addi- tional information, and assisting them to access interventions.

Discuss Prognosis. Parents want in- formation about their child’s future de-

velopment. Although professionals can- not predict the future, they should share their thoughts regarding the prognosis for children with autism. Although the child might always exhibit characteristics associated with autism, with intensive early intervention, improvements can be made.

Provide Hope. Professionals must impart a sense of optimism to families about their child’s future. This optimism assists families in confronting the diag- nosis and obtaining interventions for their child. Hope gives families the mo- tivation to continue tackling the difficul- ties that often arise as a result of the char-

acteristics and behaviors associated with autism. Hope can be provided to families by discussing the child’s strengths and likelihood of improvement in the future with the implementation of appropriate interventions. , .

Recognize That It Is Not Unusual for Professionals to React to Giving a Diagnosis of Autism. Based on the re- sults of this study, it is apparent that giv- ing a diagnosis of autism elicits many negative reactions from professionals. Al- though it is expected that hearing a di- agnosis of autism is difficult for families, it is important to consider the difficulty that professionals experience when giv- ing the diagnosis. Questioning of one’s

abilities, nervousness, increased heart rate, and quickened breathing are com- mon. Professionals need to be aware of the difficulty and realize that these reac- tions are not unusual. However, these re- actions must not be allowed to have a

negative effect on the interpretative con- ference because they may influence how parents accept the diagnosis.

Limitations

Recommendations are based primarily on information provided by mothers who were married, White, and from one of the wealthiest counties in the nation. Even though attempts were made to re- cruit mothers and fathers from a variety of backgrounds, few families from cul- turally diverse and low-income homes chose to participate. Similarly, single- parent families, foster families, adoptive families, and same-sex parental relation- ships were not represented in this study. As a result, this study does not provide information about how fathers or fami-

lies from a variety of parental relation- ships, cultures, and socioeconomic levels would react to learning that their child has autism. Furthermore, information about the severity of the child’s disability was not available. The severity of the child’s disability could influence families’ perceptions of a diagnosis of autism.

Next Steps There is a need for further research to

gain a better understanding of profes- sionals’ perceptions of the importance and utility of educational and medical de- finitions of autism. This information will

help professionals clarify who is responsi- ble for giving diagnoses and will assist families in locating funding for interven- tions. In addition, perceptions and reac- tions to the diagnosis of autism need to be explored for different cultural, ethnic, socioeconomic, and family configura- tions. Such information would be useful

in developing an inventory to help pre- dict families’ perceptions of autism and their needs and reactions to the diagno- sis. Such information could assist profes- sionals in addressing the recommenda-

FOCUS ON AUTISM AND OTHER DEVELOPMENTAL DISABILITIES

38

a profound effect on the family (Selig­ man & Darling, 1997; Turnbull & Turn­ bull, 1997; Webber, Simpson, & Bentley, 2000). Professionals must provide infor­ mation about autism that the family un­ derstands and that allows the family to seek appropriate interventions. Each family is unique in their needs and per­ ceptions of autism. It is essential that pro­ fessionals obtain an understanding of these needs and perceptions so that they can tailor the interpretative conference to the family. This information influences how the diagnosis is presented, the type of information shared, and the order in which the information is shared. Impor­ tant areas to consider are prior knowl­ edge of autism, diagnosis first versus overview first, location of the child, and sharing scores. It is essential that profes­ sionals determine what information the family would find most useful.

Use Good Communication Skills. The diagnosis should be presented clearly in language that parents under­ stand. In addition, professionals should use reflective listening and other nonver­ bal communication skills to put parents at ease. The interpretative conference should not be rushed and should be as relaxed as possible.

Provide a List of Resources and In­ terventions. Providing a list of inter­ ventions and community resources is es­ sential because it assists families in quickly obtaining access to services. Given the variety of interventions avail­ able for children with autism, it is not surprising that parents want professionals to help them locate appropriate treat­ ments for their child. Resources should be accurate and include phone numbers or the name of the individual(s) to con­ tact. Although many professionals warn against giving specific interventions, rec­ ommended treatments should be as spe­ cific as possible based on the information obtained during the evaluation. Addi­ tionally, prioritizing interventions is use­ ful because it helps families determine which interventions are the most impor­ tant to pursue.

Provide Follow-up. The importance of follow-up with families cannot be overemphasized. Parents may be so over­ whelmed at the interpretative conference that they stop listening to the profes­ sionals. As a result, they miss important information. Similarly, after parents have had the opportunity to consider the di­ agnosis and recommendations, they may have additional questions. Professionals can provide follow-up with a phone call or letter a few weeks after the interpreta - tive conference. When providing follow­ up, professionals should help families by answering questions, providing addi­ tional information, and assisting them to access interventions.

Discuss Prognosis. Parents want in­ formation about their child's future de­ velopment. Although professionals can­ not predict the future, they should share their thoughts regarding the prognosis for children with autism. Although the child might always exhibit characteristics associated with autism, with intensive early intervention, improvements can be made.

Provide Hope. Professionals must impart a sense of optimism to families about their child's future. This optimism assists families in confronting the diag­ nosis and obtaining interventions for their child. Hope gives families the mo­ tivation to continue tackling the difficul­ ties that often arise as a result of the char­ acteristics and behaviors associated with autism. Hope can be provided to families by discussing the child's strengths and likelihood of improvement in the future with the implementation of appropriate interventions.

Recognize That It Is Not Unusual for Professionals to React to Giving a Diagnosis of Autism. Based on the re­ sults of this study, it is apparent that giv­ ing a diagnosis of autism elicits many negative reactions from professionals. Al­ though it is expected that hearing a di­ agnosis of autism is difficult for families, it is important to consider the difficulty that professionals experience when giv­ ing the diagnosis. Questioning of one's

abilities, nervousness, increased heart rate, and quickened breathing are com­ mon. Professionals need to be aware of the difficulty and realize that these reac­ tions are not unusual. However, these re­ actions must not be allowed to have a negative effect on the interpretative con­ ference because they may influence how parents accept the diagnosis.

Limitations

Recommendations are based primarily on information provided by mothers who were married, White, and from one of the wealthiest counties in the nation. Even though attempts were made to re­ cruit mothers and fathers from a variety of backgrounds, few families from cul­ turally diverse and low-income homes chose to participate. Similarly, single­ parent families, foster families, adoptive families, and same-sex parental relation­ ships were not represented in this study. As a result, this study does not provide information about how fathers or fami­ lies from a variety of parental relation­ ships, cultures, and socioeconomic levels would react to learning that their child has autism. Furthermore, information about the severity of the child's disability was not available. The severity of the child's disability could influence families' perceptions of a diagnosis of autism.

Next Steps

There is a need for further research to gain a better understanding of profes­ sionals' perceptions of the importance and utility of educational and medical de­ finitions of autism. This information will help professionals clarify who is responsi­ ble for giving diagnoses and will assist families in locating funding for interven­ tions. In addition, perceptions and reac­ tions to the diagnosis of autism need to be explored for different cultural, ethnic, socioeconomic, and family configura­ tions. Such information would be useful in developing an inventory to help pre­ dict families' perceptions of autism and their needs and reactions to the diagno­ sis. Such information could assist profes­ sionals in addressing the recommenda -

Downloaded from foa.sagepub.com at FLORIDA INTERNATIONAL UNIV on June 16, 2015

39

tion for understanding the family’s needs.

Professionals identified three different

groups of parents (i.e., suspecting autism, suspecting a disability other than autism, not suspecting any problem). Further research is needed to increase

our understanding of why professionals are willing to state the diagnosis of au- tism clearly to some groups of parents and not to other groups. Families want

to leave the interpretative conference with hope. Additional research is needed to learn how professionals can provide hope to families. Although professionals might be em-

ploying many of the recommendations offered in the present study, many of the recommendations are not being imple- mented because of time and financial

constraints at their work sites. Providing a comfortable setting, an adequate follow-up, and a list of interventions might require substantial changes in the allocation of money and time. For exam-

ple, money is needed to create a com- fortable environment for families and children. This might include architec- tural and interior design changes or the purchase of interesting toys to occupy the child. Additionally, professionals must be given release time from daily responsibilities to provide follow-up ser- vices to families or to visit various com-

munity resources and interventions. Pro- viding follow-up and visiting various programs is time consuming but impor- tant if professionals are to provide fami- lies with accurate interventions and assist

families in obtaining the best services possible for children with autism.

ABOUT THE AUTHORS

Michal S. Nissenbaum, PhD, has an academic

appointment in the Department of Psychiatry and a clinical appointment at the Develop- mental Disabilities Center at the University of Kansas Medical Center. Her current interests

include working with infants, toddlers, and preschoolers with disabilities and their families and assessment and interventions for young children with autism. Nona Tollefson, PhD, is a professor of educational psychology and re- search at the University of Kansas. She cur-

rently teaches courses in qualitative and quan-

titative assessment. R. Matthew Reese, PhD, is director of training at the Kansas CEDDARS and the coordinator of psychology at the Devel- opmental Disabilities Center at the University of Kansas Medical Center. He holds academic appointments in the Department of Human Development and Family Life and the Depart- ment of Pediatrics. Address: Michal S. Nis- senbaum, Developmental Disabilities Center, University of Kansas Medical Center, 3901 Rainbow Blvd., Kansas City, KS 66160-7340; e-mail: [email protected]

NOTES

1SV1-Pϒ1-CE

2SV1-Pϒ3-O, SV2-Pϒ3-E 3SV1-OT2-B, SVI -SL2-Q 4SV1-PO1-N 5SV1-PO1-D 6SV1-Pϒ3-N 7SV1-PO1-AT, SV1-OT1-DM 8SV1-PO1-AK, SV1-PT1-R 9SV1-PO1-AK 10SV1-OT2-S, SV2-PT1-R 11SV1-OT1-M 12SV1-Pϒ1-AB 13SV1-FM7-K, SV1-FD2-Q SV1-FD1-BS, SV1-FM1-AR

14SV1-FM7-K, SV1-FM11-AC, SV1-FM4-AS 15SV1-FD2 -BQ SV1-FM10-J, SV1-FM15-AO, SV1-FM3-B, SV1-FM7-BX

16 SV1-FM2-X, SVI -FM4-AN 17 SV1-FM1-W, SV1-FM11-BV, SV1-FM2-H,

SV1-FM7-ϒ, SV1-FM9-DF 18SV1-FM1-F, SV1-FM2-AW, SV1-FM8-D, SV1-FM11-F, SV1-FD1-D, SV1-FD2-N

19SV1-FD2-BQ SV1-FM10-J, SV1-FM15-AO, SV1-FM3-B, SV1-FM7-BX 20SV1-FM5-AW 21SV1-FM10-G, SV2-FM9-K 22SV1FM15-P 23SV1-FM3-X 24SV1-FM7-AA, SV1-FD2-BF, SV1-FM-7- BK, SV2-FM9-I, SV2-FM5-A, SV2-FM1-D, SV1-FD1-AV, SV2-FM11-A, SV1-FM7-AQ 25SV1-SL2-AR, SV1-Pϒ2-AV, SV1-SL3-M, SV1-SO1-AL, SV1-PO1-BH, SV2-Pϒ3-J, SV2-Pϒ2-K,SV3-SL2-R, SV1-PT1-E

26SV1-OT2-J, SV1-SL3-BV, SV1-SL1-Q, SV1- Pϒ1-ZZ, SV2-SL3-J 27SV1-FM7-BK 28SV1- FM7-BK

29SV2-FM1-D, SV1-FD1-AV, SV2-FM11-A 30SV2-FD1-C, SV2-FD2-B, SV2-FM15-R, SV2-FM14-B, SV2-12-B, SV2-FM11-B, SV2-FM6-B, SV2-FM5-C, SV2-FM1-F, SV2-FM9-C, SV2-FM7-D, SV2-12-B 31SV1-FM7-AA, SV1-FD2-BF, SV1-FM-7- BK, SV2-FM9-I, SV2-FM5-A, SV2-FM1-D,

SV1-FD1-AV, SV2-FM11-A, SV1-FM7-AQ SV1-FM14-L, SV1-FM7-BU, SV1-FD2-BH 32SV1-FM14-G, SV1-FM1-1, SV2-FM4-A, SV2-FD1B, SV2-FM7-A, SV2-FM10-B

33SV1-FM1-I, SV2-FM4-A, SV2-FD1B 34SV1-FM15-AM, SV2-FM10-B, SV2-FM9-A, SV2-FD2-B, SV2-FM5-T, SV2-FM13-A, SV2—FM14-A, SV2-FM15-T 35SV2-FD1-A, SV2-FD2-A, SV2-FM4-C, SV2-FM9-B, SV2-FM1-Q, SV2-FM5-F, SV2-FM6-A, SV2-FM12-A

36SV1-SL2-D, SV1-Pϒ2-T, SV1-SL3-M, SV1- SO1-AL

37SV1-PO1-BH, SV3-SL2-R, SV1-SL2-D 38SV1-SL2-AR, SV1-Pϒ2-AV, SV1-SL3-M, SV1-SO1-AL, SV1-PO1-BH, SV2-Pϒ3-J, SV2-Pϒ2-K,SV3-SL2-R 39SV1-SL2-N, SV2-SL3-Z, SV2-OT1-H, SV2-

Pϒ1-E, SV3-OT3-N, SV3-Pϒ3-H 40SV2-PT1-H, SV2—PO1-P, SV2-SO1-D, SV1-SL3-AH

41SV2-OT1-I, SV2-OT2-T, SV2-Pϒ2-J, SLI- SO1-M

42SV2-I-SL1-S 43SV2-SL1-U, SV1-Pϒ1-P, SV1-SL2-R 44SV2-FM2-D, SV2-FD1-H, SV2-FM10-C, SV2-FM7-E, SV2-FM15-C 45SV2-FD2-C, SV2-FM11-D 46SV2-FM4-E, SV2-FM9-H, SV2-FM13-C, SV2-FM1-P, SV2-FM5-E, SV2-FM6-D, SV2-FM11-S, SV2-FM12-C, SV2-FM14-C 47SV2-FM4-E, SV2-FM13-C, SV2-FM14-C 48SV2-FM14-C

49SV2-FM4-I, SV2-PT1-J, SV2-FM2-E, SV2- DM7-L, SV2-FM13-D, SV2-FD1-I 50SV1-Pϒ1-AH, SV1-SO1-H, SV1-SL1-AM 51SV1-PO1-B, SV1-Pϒ3-P, SV1-SO1-BB, SV2- PO1-AB

52SV1-Pϒ1-AJ, SV1-SL1-AN, SV1-OT1-BB, SVI-PTI-P, SV1-Pϒ3-Q, SV1-Pϒ2-AC 53SV1-OT2-AI, SV1-SL2-AM, SV1-SL3-AU, SV1-SO1-BQ SV1-OT1-CP, SV1-Pϒ1-AK, SV1-SL1-AO

54SV1-PO1-AI, SV1-Pϒ3-T, SV1-SL3-AL, SV1-SO1-B, SV1-PT1-M

55SV1-SL1-EJ, SV1-SL2-AP, SV1-SL3-BD, SV1-OT1-G

56SV1-PO1-AJ 57SV1-PT1-U, SV1-SL3-AS 58SV1-Pϒ3-X 59SV1-Pϒ1-AQ SV1-SL1-AR 60SV1-OT2-AM SV1-Pϒ3-V, SV1-Pϒ2-AG,

SV1-Pϒ1-BS, SV1-SL1-AQ 61SV1-PT1-T, SV1-OT2-AL 62SV1-Pϒ3-W 63SV1-PT1-Q SV1-OT2-AJ, SV1-SL1-AR 64SV1-OT2-AK, SV1-SL3-AQ 65SV1-SL1-CC

66SV1-PO1-G, SV1-SL2-BA, SV1-Pϒ1-AD, SV1-OT1-V, SV1-SL1-BA

------------------- VOLUME 17, NUMBER 1, SPRING 2002 -------------------

tion for understanding the family's needs.

Professionals identified three different groups of parents (i.e., suspecting autism, suspecting a disability other than autism, not suspecting any problem). Further research is needed to increase our understanding of why professionals are willing to state the diagnosis of au­ tism clearly to some groups of parents and not to other groups. Families want to leave the interpretative conference with hope. Additional research is needed to learn how professionals can provide hope to families.

Although professionals might be em­ ploying many of the recommendations offered in the present study, many of the recommendations are not being imple­ mented because of time and financial constraints at their work sites. Providing a comfortable setting, an adequate follow-up, and a list of interventions might require substantial changes in the allocation of money and time. For exam­ ple, money is needed to create a com­ fortable environment for families and children. This might include architec­ tural and interior design changes or the purchase of interesting toys to occupy the child. Additionally, professionals must be given release time from daily responsibilities to provide follow-up ser­ vices to families or to visit various com­ munity resources and interventions. Pro­ viding follow-up and visiting various programs is time consuming but impor­ tant if professionals are to provide fami­ lies with accurate interventions and assist families in obtaining the best services possible for children with autism.

ABOUT THE AUTHORS

Michal S. Nissenbaum, PhD, has an academic appointment in the Department of Psychiatry and a clinical appointment at the Develop­ mental Disabilities Center at the University of Kansas Medical Center. Her current interests include working with infants, toddlers, and preschoolers with disabilities and their families and assessment and interventions for young children with autism. Nona Tollefson, PhD, is a professor of educational psychology and re­ search at the University of Kansas. She cur­ rently teaches courses in qualitative and quan-

titative assessment. R. Matthew Reese, PhD, is director of training at the Kansas CEDDARS and the coordinator of psychology at the Devel­ opmental Disabilities Center at the University of Kansas Medical Center. He holds academic appointments in the Department of Human Development and Family Life and the Depart­ ment of Pediatrics. Address: Michal S. Nis­ senbaum, Developmental Disabilities Center, University of Kansas Medical Center, 3901 Rainbow Blvd., Kansas City, KS 66160-7340; e-mail: [email protected]

NOTES

1SV1-PY1-CE 2SV1-PY3-O, SV2-PY3-E 3SV1-OT2-B, SV1-SL2-Q 4SV1-PO1-N 5SV1-PO1-D 6SV1-PY3-N 7SV1-PO1-AT, SVl-OTl-DM 8SV1-PO1-AK, SVl-PTl-R 9SV1-P01-AK 10SV1-OT2-S, SV2-PT1-R 11SV1-OT1-M 12SV1-PY1-AB 13SV1-FM7-K, SV1-FD2-Q, SVl-FDl-BS,

SVl-FMl-AR 14SV1-FM7-K, SVl-FMll-AC, SV1-FM4-AS 15SV1-FD2-BQ, SVl-FMl0-J, SV1-FM15-AO,

SV1-FM3-B, SV1-FM7-BX 16 SV1-FM2-X, SV1-FM4-AN 17 SVl-FMl-W, SVJ-FMll-BV, SV1-FM2-H,

SV1-FM7-Y, SVJ-FM9-DF 18SV1-FM1-F, SVJ-FM2-AW, SVJ-FMB-D,

SVl-FMll-F, SVl-FDl-D, SVJ-FD2-N 19SV1-FD2-BQ, SVJ-FMJ0-J, SVI-FMJS-AO,

SV1-FM3-B, SV1-FM7-BX 20SV1-FM5-AW 21 SV1-FM10-G, SV2-FM9-K 22SV1FM15-P 23SV1-FM3-X 24SV1-FM7-AA, SVJ-FD2-BF, SVl-FM-7-

BK, SV2-FM9-I, SV2-FM5-A, SV2-FM1-D, SVl-FDl-AV, SV2-FM11-A, SV1-FM7-AQ

25SV1-SL2-AR, SV1-PY2-AV, SV1-SL3-M, SVl-SOl-AL, SVl-POl-BH, SV2-PY3-J, SV2-PY2-K,SV3-SL2-R, SVl-PTl-E

26SV1-OT2-], SV1-SL3-BV, SVJ-SLJ-Q, SVJ- PYJ-ZZ, SV2-SL3-J

27SVJ-FM7-BK 28SV1- FM7-BK 29SV2-FM1-D, SVJ-FDJ-AV, SV2-FM11-A 30SV2-FD1-C, SV2-FD2-B, SV2-FM15-R,

SV2-FM14-B, SV2-12-B, SV2-FM11-B, SV2-FM6-B, SV2-FMS-C, SV2-FM1-F, SV2-FM9-C, SV2-FM7-D, SV2-12-B

31SV1-FM7-AA, SV1-FD2-BF, SVl-FM-7- BK, SV2-FM9-I, SV2-FM5-A, SV2-FM1-D,

39

SVl-FDl-AV, SV2-FM11-A, SV1-FM7-AQ, SV1-FM14-L, SV1-FM7-BU, SV1-FD2-BH

32SVJ-FM14-G, SVl-FMl-1, SV2-FM4-A, SV2-FDIB, SV2-FM7-A, SV2-FM10-B

33SV1-FM1-I, SV2-FM4-A, SV2-FD1B 34SV1-FM15-AM, SV2-FM10-B, SV2-FM9-A,

SV2-FD2-B, SV2-FMS-T, SV2-FM13-A, SV2-FM14-A, SV2-FM15-T

35SV2-FD1-A, SV2-FD2-A, SV2-FM4-C, SV2-FM9-B, SV2-FM1-Q, SV2-FMS-F, SV2-FM6-A, SV2-FM12-A

36SV1-SL2-D, SV1-PY2-T, SV1-SL3-M, SVI­ SO1-AL

37SV1-PO1-BH, SV3-SL2-R, SV1-SL2-D 38SV1-SL2-AR, SV1-PY2-AV, SV1-SL3-M,

SVl-SOl-AL, SVl-POl-BH, SV2-PY3-J, SV2-PY2-K,SV3-SL2-R

39SVJ-SL2-N, SV2-SL3-Z, SV2-OTl-H, SV2- PY1-E, SV3-OT3-N, SV3-PY3-H

40SV2-PT1-H, SV2-PO1-P, SV2-SO1-D, SV1-SL3-AH

41SV2-OTl-I, SV2-OT2-T, SV2-PY2-], SLl- SOl-M

42SV2-I-SL1-S 43SV2-SL1-U, SVJ-PYJ-P, SV1-SL2-R 44SV2-FM2-D, SV2-FD1-H, SV2-FM10-C,

SV2-FM7-E, SV2-FM15-C 45SV2-FD2-C, SV2-FM11-D 46SV2-FM4-E, SV2-FM9-H, SV2-FM13-C,

SV2-FM1-P, SV2-FMS-E, SV2-FM6-D, SV2-FM11-S, SV2-FM12-C, SV2-FM14-C

47SV2-FM4-E, SV2-FM13-C, SV2-FM14-C 48SV2-FM14-C 49SV2-FM4-I, SV2-PT1-J, SV2-FM2-E, SV2-

DM7-L, SV2-FM13-D, SV2-FD1-I 50SV1-PY1-AH, SVI-SOI-H, SVI-SLJ-AM 51SV1-PO1-B, SV1-PY3-P, SVl-SOl-BB, SV2-

PO1-AB 52SV1-PY1-AJ, SVl-SLl-AN, SVl-OTl-BB,

SVJ-PTI-P, SV1-PY3-Q, SV1-PY2-AC 53SV1-OT2-AI, SV1-SL2-AM, SV1-SL3-AU,

SVJ-SOI-BQ, SVl-OTl-CP, SVl-PYl-AK, SVl-SLl-AO

54SV1-PO1-AI, SV1-PY3-T, SV1-SL3-AL, SVl-SOl-B, SVI -PTl-M

55SV1-SL1-EJ, SV1-SL2-AP, SV1-SL3-BD, SVl-OTl-G

56SV1-PO1-AJ 57SV1-PT1-U, SV1-SL3-AS 58SVI-PY3-X 59SV1-PY1-AQ, SVl-SLl-AR 60SV1-OT2-AM, SV1-PY3-V, SV1-PY2-AG,

SVl-PYl-BS, SVl-SLl-AQ 61 SV1-PT1-T, SV1-OT2-AL 62SV1-PY3-W 63SV1-PT1-Q, SV1-OT2-AJ, SVl-SLl-AR 64SV1-OT2-AK, SV1-SL3-AQ 65SV1-SL1-CC 66SV1-PO1-G, SV1-SL2-BA, SVl-Prl-AD ,

SVl-OTl-V, SVl-SLl-BA

Downloaded from foa.sagepub.com at FLORIDA INTERNATIONAL UNIV on June 16, 2015

40

67SV1-PO1-BC, SV1-SL1-BB, SV1-SL3-AG, SV1-OT1-BI

68SV1-SL3-Z, SV1-PO1-ϒ, SV1-OTI-U, SVI- Pϒ2-N, SV1-SL1-BU 69SV1-SO1-BO, SV1-SL1-BE, SV1-SL3-BH,

SV1-Pϒ2-AE

70SV1SL3-BH 71SV2-OT2-D, SV1-SL3-BS 72SV1-OT2-U, SV1-SL3-CC, SV1-SO1-BC,

SV1-Pϒ2-AA, SV1-OT1-H, SV1-PT1-AF

73SV1-OT2-X, SV1-SL1-DT, SV2-Pϒ1-F 74SV1-OT2-V, SV1-SO1-R, SV1-OT1-BG,

SV1-Pϒ2-AD, SV1-SL1-AD 75SV1-PO1-AE, SV1-Pϒ3-K, SV1-SO1-AB, SV1-OT1-BD, SV1-SL3-AB, SV1-SL2-AJ, SV1-Pϒ1-AE, SV1-SL1-L, SV1-Pϒ2-ϒ, SV2-SL2-G

76SV1-SL1-L 77SV1-OT2-T, SV1-Pϒ1-AC, SV1-SL3-AC, SV2-OT2-C

78SV1-SL1-CE, SV1-Pϒ1-BC, SV1-Pϒ2-AJ, SV1-SO1-CB, SV1-Pϒ3-AD, SV1-OT2-AW, SV1-SL3-BG, SV2-SL2-H

79SV1-SL1-CH, SV1-SL2-AT 80SV1-OT2-AC, SV1-SL2-O, SV1-SO1-AO,

SV2-OTI -O, SV2-SL2-D, SV2-Pϒ1-B, SV2- SL3-M

81SV1-OT2-AT, SV1-SO1-AP 82SV2-Pϒ1-S, SV2-SO1-AU 83SV1-SL3-CB, SV2-Pϒ1-R, SV2-PT1-AA 84SV1-OT2-W, SV2-SL3-L 85SV1-SL3-CH 86SV1-SL1-AH, SV1-OT1-DQ, SV1-PO1-M 87SV1-Pϒ3-L, SV1-SL2-AE, SV1-SL3-N, SV1-

OT1-CI, SV1-Pϒ2-U, SV1-SO1-BD 88SV1-FM6-N, SV1-FD-L, SV1-FM11-M 89SV1-FD2-AH, SV1-FM5-F, SV1-FM10-X, SV1-FM11-AV

90SV1-FM11-AZ, SV1-FM15-AG, SV1-FM5- AC, SV1-FM13-T, SV1-FM6-D, SV1-

FM13-AD, SV1-FD1-Z, SV1-FM1-N, SV1-FM9-CS, SV1-FD2-4, SV1-FM10-L, SV1-FM15-AD, SV1-FM6-F 91SV1-FD2-AG, SV1-FM15-BB, SV1-FM5-G, SV1-FM8-Q 92SV1-FD2-AF, SV1-FM14-AK, SV1-FM10-

W, SV1-FM13-H, SV1-FM15-I, SV1-FM4-

M, SV1-FM5-AB, SV1-FM7-CR, SV1-FM9-

DQ 93SV1-FM11-V 94SV1-FM1-V, SV1-FM15-M, SV1-FM6-Z, SV1-FM3-AJ, SV1-FM11-V, SV1-FM9-Cϒ 95SV1-FM15-N, SV1-FM12-AE, SV1-FM11-

E, SV1-FD2-J, SV1-FD1-M, SV2-FM11-E 96SV1-FM7-B, SV1-FM6-A, SV1-FM2-B, SV1- FM15-L, SV1-FM1-C 97SV1-FM1-C 98SV1-FD2-K, SV1-FM11-H, SV1-FM2-AK 99SV1-FD2-AA, SV1-FM9-S, SV1-FM6-P, SV1-FM3-I, SV1-FM14-E, SV1-FM13-E

100SV1-FM10-N 101SV1-FM7-B, SV1-FM6-A, SV1-FM2-B, SV1-FM15-L, SV1-FM1-C

102SV1-FD1-QR, SV1-FM10-M, SV1-FM2-G, SV1-FM5-X, SV1-FM3-R, SV2-FD1-AA, SV2-FM2-Q, SV2-FM10-P, SV2-FM7-W, SV2-FM9-X

103SV1-FM14-AG, SV1-FM5-ϒ, SV1-FM8-N 104SV1-FM8-N 105SV1-FM5-W 106SV1-FM13-AG, SV1-FM8-X, SV1-FM1- BA, SV1-FM10V 107SV1-FD1-L, SV1-FM11-AG 108SV1-FM7-Q, SV1-FM6-W, SV1-FM3-AM, SV1-FM15-R

109SV2-FM2-G, SV2-FM4-B, SV2-FM10-E 110 SV1-FD2-AC, SV1-FM10-S, SV1-

FM13-K, SV1-FM2-AI, SV2-FM9-AI, SV1-

FM5-L, SV1-FM8-AA, SV2-FM6-P

111SV1-FD2-AO, SV1-FM11-BA, SV2- FD2-M

112SV1-FM2-AH 113SV1-FM1-E, SV2-FM1-I 114SV1-FM9-F 115SV1-FM4-AF 116SV1-FM1-K, SV1-FM5-AG, SV1-FM8-J 117SV1-FM11-Aϒ, SV1-FM4-P 118SV1-FD1-K, SV1-FD2-X, SV1-FM7-BQ, SV1-FM14-P

119SV1-FD2-H, SV1-FD1-C, SV1-FD15-H, SV1-FM14-B, SV1-FM2-AX, SV1-FM3-P, SV1-FM6-H, SV1-FM9-I 120SV1-PT1-R, SV1-SO1-Q, SV1-OT1-BQ,

SV1-Pϒ1-I, SV1-OT2-S

121SV1-PT1-S, SV1-SO1-A, SV1-OT2-S, SV3- Pϒ1-L, SV1-PO1-AD, SV1-OT1-AC, SV2-

OT1-T, SV3-SL1-O, SV3-PT1-K, SV3- Pϒ1-A

122SV2-Pϒ2-P, SV2-PO1-R, SV2-SL1-E, SV2- OT1-U, SV2-Pϒ1-M, SV2-OT2-X, SV2-

SL2-K, SV2-Pϒ3-R, SV2-SO1-C 123SV2-PT1-Z, SV2-SL3-AH 124SV2-FD1-Q, SV1-FM1-S, SV2-FM12-G 125SV2-FM2-I, SV2-FM10-G, SV2-FM7-N, SV2-FM13-G, SV2-FM5-K, SV2-FM11-V, SV2-FM15-K

126SV2-FM2-J, SV2-FM13-Q 127SV1-Pϒ1-AR, SV1-FM11-K, SV2-FM11- H, SV2-FD1-S, SV2-FD-F, SV2-FM1-AB, SV2-FM1-AB, SV2-FM6-L, SV3-SL1-M, SV3-SL3-B

128SV1-OT1-DJ, SV2-FM4-N, SV2-FM7-Q, SV2-FM9-AC, SV2-FD2-K 129SV2-FM13-N, SV2-FD2-M, SV2-FM12-I, SV2-FM15-L, SV1-OT2-A 130SV2-FM1-U, SV2-FM2-D, SV2-FM5-X, SV2-FM6-U, SV2-FM15-Q, SV2-FD1-Z, SV2-FD2-K, SV3-OT1-J, SV3-PT1-I, SV3- SO1-H

131SV2-FM1-T, SV2-FM5-W, SV2-FM11-ϒ

132SV3 -Pϒ3-P, SV3-OT2-P, SV3-Pϒ2-K, SV3-OT1-J, SV3-POI-1, SV3-Pϒ1-J 133SV1-OT2-B, SV2-Pϒ1-BO, SV1-SL1-DX, SV1-PO1-C, SV1-OT1-BU 134SV1-OT1-EP, SV1-PO1-AS, SV1-SL1-DW 135SV2-SL1-L, SV2-Pϒ1-O, SV2-OT2-AC 136SV2-Pϒ1-AX, SV2-SO1-E, SV2-OT2-AD, SV2-OT1-FS, SV2-SL3-AL, SV2-PT1-V, SV2-SL1-EC

137SV1-SL1-AE, SV1-Pϒ1-BQ, SV1-SL3-P, SV2-PT1-U, SV2-Pϒ2-U, SV2-SL1-N, SV2-

Pϒ1-Q SV2-OT2-AA 138SV1-SL3-AN, SV1-SO1-CF, SV1-OT1-A, SV2-PT1-T

139SV2-Pϒ2-V, SV2-SO1-F 140SV2-POI1-V, SV2-SL2-L 141SV2-OT2-Z

142SV1-FM15-N, SV1-FM12-AE, SV1- FM11-E, SV1-FD2-J, SV1-FD1-M, SV2- FM11-E

143SV3-Pϒ3-D, SV3-SL1-P, SV3-Pϒ2-B, SV3- OT1-L, SV3-PO1-K, SV3-SO1-K

144SV3-OT2-A, SV3-SL3-L 145SV3-PT1-A, SV3-Pϒ1-M, SV3-SL2-O 146SV3-OT1-K, SV3-Pϒ1-N, SV3-SL3-M 147SV3-PϒS-B, SV3-SO1-A 148SV3-Pϒ3-E, SV3-PO1-A 149SV3-OT2-C, SV3-Pϒ2-A, SV3-SL3-K 150SV1-FM4-K, SV2-FM15-S, SV2-FM11-R, SV2-FM6-V, SV2-FM1-AE, SV2-FD2-L, SV2-FM5-S

151SV2-FD2-L 152SV1-OT1-BG 153SV1-SL1-DA 154SV2-FM6-X, SV2-FM9-X, SV2-FM14-R, SV2-FD2-H

155SV2-FD2-AN, SV2-FM1-AM, SV2-FM5-V, SV2-FM11-W, SV2-FM12-N, SV2-FM13-X, SV2-FM15-V

156SV2-FM2-N, SV2-FM4-P, SV2-FM5-O, SV2-FM7-V, SV2-FM10-M, SV2-FM11-N, SV2-FM13-K, SV2-FM15-P 157SV2-FM2-N, SV2-FM4-P, SV2-FM5-O, SV2-FM7-V, SV2-FM10-M, SV2-FM11-N, SV2-FM13-K, SV2-FM15-P

158SV1-FM14-C, SV2-FM6-R, SV2-FM12-O, SV2-FM14-J 159SV1-FM14-C, SV2-FM12-O 160 V2-FM14-J 161SV3-Pϒ2-M, SV3-OT2-J, SV1-OT2-BJ,

SV3-Pϒ3-I, SV3-SO1-D, SV1-OT2-1, SV3- Pϒ3-W

162SV3-Pϒ3-I, SV3-SO1-D 163SV1-OT2-I, SV3-Pϒ3-W 164SV1-Pϒ3-ϒ, SV3-Pϒ3-J, SV3-PT1-E, SV3-

Pϒ1-F, SV3-SL2-G 165SV3-SL1-F, SV3-Pϒ2-G, SV3-OT1-F, SV3- PO1-E

166SV2-FM2-O, SV2-FM4-Q

------------- FOCUS ON AUTISM AND OTHER DEVELOPMENTAL DISABILITIES -------------

40

67SV1-P01-BC, SVl-SLl-BB, SV1-SL3-AG, SVl-OTl-BI

68svl-SL3-Z, SVl-POl-Y, SVl-OTl-U, SV1- PY2-N, SVl-SLl-BU

69SV1-SO1-BO, SVl-SLl-BE, SV1-SL3-BH, SV1-PY2-AE

70SV1SL3-BH 71 SV2-OT2-D, SV1-SL3-BS 72SV1-OT2-U, SV1-SL3-CC, SVJ-SO1-BC,

SV1-PY2-AA, SVl-OTl-H, SVl-PTl-AF 73SV1-OT2-X, SVl-SLl-DT, SV2-PY1-F 74SV1-OT2-V, SVl-SO1-R, SVl-OTl-BG,

SV1-PY2-AD, SVl-SLl-AD 75SV1-PO1-AE, SV1-PY3-K, SVJ-SO1-AB,

SVl-OTl-BD, SV1-SL3-AB, SV1-SL2-AJ, SVl-PYl-AE, SVl-SLl-L, SV1-PY2-Y, SV2-SL2-G

76SV1-SL1-L 77SV1-OT2-T, SVl-PYl-AC, SV1-SL3-AC,

SV2-OT2-C 78SV1-SL1-CE, SVl-PYl-BC, SV1-PY2-AJ,

SVl-SO1-CB, SV1-PY3-AD, SV1-OT2-AW, SV1-SL3-BG, SV2-SL2-H

79SV1-SL1-CH, SV1-SL2-AT 80svl-OT2-AC, SV1-SL2-O, SVl-SO1-AO,

SV2-OTl-O, SV2-SL2-D, SV2-PY1-B, SV2- SL3-M

81SV1-O12-AT, SVJ-SO1-AP 82SV2-PYJ-S, SV2-SOJ-AU 83SV1-SL3-CB, SV2-PYJ-R, SV2-PTJ-AA 84SVJ-O12-W, SV2-SL3-L 85SV1-SL3-CH 86SVJ-SL1-AH, SVJ-OTl-DQ, SVJ-POJ-M 87SV1-PY3-L, SVJ-SL2-AE, SVJ-SL3-N, SVJ-

OTJ-CI, SVJ-PY2-U, SVJ-S01-BD 88SV1-FM6-N, SVJ-FD-L, SVl-FMll-M 89SVJ-FD2-AH, SVl-FMS-F, SVJ-FMJO-X,

SVJ-FMll-AV 90SV1-FM11-Az, SVJ-FMJS-AG, SVJ-FMS­

AC, SVJ-FM13-T, SVJ-FM6-D, SV1- FM13-AD, SVJ-FDJ-Z, SVl-FMl-N,

SV1-FM9-CS, SV1-FD2-4, SVJ-FMlO-L, SVl-FMJS-AD, SV1-FM6-F

91 SV1-FD2-AG, SVl-FMJS-BB, SVJ-FMS-G, SVJ-FMB-Q

92SV1-FD2-AF, SV1-FM14-AK, SVJ-FMJO­ W, SV1-FM13-H, SVJ-FMJS-I, SVJ-FM4-

M, SVl-FMS-AB, SV1-FM7-CR, SVJ-FM9-

DQ 93SV1-FM11-V 94SVJ-FMJ-V, SVJ-FMJS-M, SVJ-FM6-Z,

SVJ-FM3-AJ, SVl-FMll-V, SVJ-FM9-CY 95SVJ-FMJ5-N, SV1-FM12-AE, SVJ-FMll­

E, SV1-FD2-J, SVl-FDl-M, SV2-FM11-E 96SV1-FM7-B, SVJ-FM6-A, SV1-FM2-B, SVJ-

FMJS-L, SVJ-FMJ-C 97SVJ-FMJ-C 98SVJ-FD2-K, SVl-FMll-H, SVJ-FM2-AK 99SVJ-FD2-AA, SV1-FM9-S, SV1-FM6-P,

SV1-FM3-I, SV1-FM14-E, SV1-FM13-E

100SV1-FM10-N 101svI-FM7-B, SV1-FM6-A, SV1-FM2-B,

SVl-FMJS-L, SVJ-FMl-C 102SV1-FD1-QR, SVJ-FMJO-M, SV1-FM2-G,

SVl-FMS-X, SV1-FM3-R, SV2-FDJ-AA, SV2-FM2-Q, SV2-FM10-P, SV2-FM7-W, SV2-FM9-X

103SV1-FM14-AG, SVl-FMS-Y, SV1-FM8-N 104SV1-FM8-N 105SV1-FM5-W 106SV1-FM13-AG, SVJ-FMB-X, SVl-FMl­

BA, SVJ-FMJ0V 107SVJ-FD1-L, SVl-FMll-AG 108svI-FM7-Q, SV1-FM6-W, SV1-FM3-AM,

SV1-FM15-R 109SV2-FM2-G, SV2-FM4-B, SV2-FM10-E uo SV1-FD2-AC, SVl-FMl0-S, SV1-

FM13-K, SV1-FM2-AI, SV2-FM9-Al, SVl­ FMS-L, SV1-FM8-AA, SV2-FM6-P

lllSVJ-FD2-AO, SVl-FMll-BA, SV2- FD2-M

112SV1-FM2-AH 113SV1-FM1-E, SV2-FM1-I 114SVJ-FM9-F 115SV1-FM4-AF 116SV1-FM1-K, SVJ-FMS-AG, SVJ-FMB-] ll7SV1-FM11-AY, SVJ-FM4-P msvl-FDl-K, SV1-FD2-X, SV1-FM7-BQ,

SVJ-FM14-P 119SV1-FD2-H, SVJ-FDJ-C, SV1-FD15-H,

SV1-FM14-B, SV1-FM2-AX, SV1-FM3-P, SV1-FM6-H, SV1-FM9-I

120SV1-PT1-R, SVJ-SO1-Q, SVl-OTl-BQ, SVl-PYJ-I, SV1-OT2-S

121SV1-PT1-S, SVJ-SO1-A, SV1-OT2-S, SV3- PY1-L, SVl-POl-AD, SVl-OTl-AC, SV2- OT1-T, SV3-SL1-O, SV3-PT1-K, SV3- PY1-A

122SV2-PY2-P, SV2-PO1-R, SV2-SL1-E, SV2- OTJ-U, SV2-PY1-M, SV2-OT2-X, SV2- SL2-K, SV2-PY3-R, SV2-SO1-C

123SV2-PT1-Z, SV2-SL3-AH 124SV2-FD1-Q, SVl-FMl-S, SV2-FM12-G 125SV2-FM2-I, SV2-FM10-G, SV2-FM7-N,

SV2-FM13-G, SV2-FM5-K, SV2-FM11-V, SV2-FM15-K

I26SV2-FM2-J, SV2-FM13-Q 127SV1-PYJ-AR, SVJ-FMll-K, SV2-FM11-

H, SV2-FD1-S, SV2-FD-F, SV2-FM1-AB,

SV2-FM1-AB, SV2-FM6-L, SV3-SL1-M, SV3-SL3-B

128SV1-OTl-DJ, SV2-FM4-N, SV2-FM7-Q, SV2-FM9-AC, SV2-FD2-K

129SV2-FM13-N, SV2-FD2-M, SV2-FM12-I, SV2-FM15-L, SVJ-OT2-A

130SV2-FM1-U, SV2-FM2-D, SV2-FM5-X, SV2-FM6-U, SV2-FM15-Q, SV2-FD1-Z, SV2-FD2-K, SV3-OT1-J, SV3-PT1-I, SV3- SO1-H

131SV2-FM1-T, SV2-FM5-W, SV2-FM11-Y

132SV3 -PY3-P, SV3-OT2-P, SV3-PY2-K, SV3-OTl-J, SV3-POI-l, SV3-PY1-]

133SVJ-O12-B, SV2-PY1-BO, SVJ-SLJ-DX, SVl-POl-C, SVl-OTl-BU

134SV1-OTl-EP, SVl-POl-AS, SVl-SLl-DW 135SV2-SL1-L, SV2-PY1-O, SV2-O12-AC 136SV2-PY1-AX, SV2-SO1-E, SV2-O12-AD,

SV2-OTl-FS, SV2-SL3-AL, SV2-PT1-V, SV2-SL1-EC

137SV1-SL1-AE, SVl-PYl-BQ, SV1-SL3-P, SV2-PT1-U, SV2-PY2-U, SV2-SL1-N, SV2- PY1-Q, SV2-O12-AA

138SVJ-SL3-AN, SVl-SO1-CF, SVl-OTl-A, SV2-PT1-T

139SV2-PY2-V, SV2-SO1-F 140SV2-POI1-V, SV2-SL2-L 141SV2-OT2-Z 142SV1-FM15-N, SV1-FM12-AE, SVl-

FMll-E, SV1-FD2-J, SVl-FDl-M, SV2- FM11-E

143SV3-PY3-D, SV3-SL1-P, SV3-PY2-B, SV3- OTJ-L, SV3-PO1-K, SV3-SO1-K

144SV3-O12-A, SV3-SL3-L 145SV3-PT1-A, SV3-PY1-M, SV3-SL2-O 146SV3-OT1-K, SV3-PY1-N, SV3-SL3-M 147SV3-PYS-B, SV3-SO1-A 148SV3-PY3-E, SV3-PO1-A 149SV3-O12-C, SV3-PY2-A, SV3-SL3-K 150SV1-FM4-K, SV2-FM15-S, SV2-FM11-R,

SV2-FM6-V, SV2-FM1-AE, SV2-FD2-L, SV2-FM5-S

151SV2-FD2-L 152SV1-OTl-BG 153SV1-SL1-DA 154SV2-FM6-X, SV2-FM9-X, SV2-FM14-R,

SV2-FD2-H 155SV2-FD2-AN, SV2-FM1-AM, SV2-FM5-V,

SV2-FM11-W, SV2-FM12-N, SV2-FM13-X, SV2-FM15-V

156SV2-FM2-N, SV2-FM4-P, SV2-FM5-O, SV2-FM7-V, SV2-FM10-M, SV2-FM11-N, SV2-FM13-K, SV2-FM15-P

157SV2-FM2-N, SV2-FM4-P, SV2-FM5-O, SV2-FM7-V, SV2-FM10-M, SV2-FM11-N, SV2-FM13-K, SV2-FM15-P

158SV1-FM14-C, SV2-FM6-R, SV2-FM12-O,

SV2-FM14-J 159SVJ-FM14-C, SV2-FM12-O 160 V2-FM14-J 161SV3-PY2-M, SV3-OT2-J, SV1-OT2-BJ,

SV3-PY3-I, SV3-SO1-D, SVJ-OT2-I, SV3-

PY3-W 162SV3-PY3-I, SV3-SO1-D 163SV1-OT2-I, SV3-PY3-W 164SV1-PY3-Y, SV3-PY3-J, SV3-PT1-E, SV3-

PY1-F, SV3-SL2-G 165SV3-SL1-F, SV3-PY2-G, SV3-OTl-F, SV3-

PO1-E 166SV2-FM2-O, SV2-FM4-Q

Downloaded from foa.sagepub.com at FLORIDA INTERNATIONAL UNIV on June 16, 2015

41

167SV2-FM6-S, SV2-FM15-D, SV2-FM14-K, SV2-FM11-O, SV2-FM13-L, SV2-FM9-V, SV2-FM7-F, SV2-FM4-Q SV2-FD2-I, SV2- FM5-P, SV2-FM1-G, SV2-FM10-N, SV2-

FM12-Q 168SV1-FM5-BJ 169SV2-FM5-P 170SV1-FM14-AI, SV1-FM15-AQ SV2- FM10-O, SV2-FD2-J, SV2-FM6-T 171SV1-FM12-R, SV2-FM2-R, SV2-FM7-G, SV2-FM5-Q 172SV1-FM11-AI, SV2-FM11-P, SV2-FM14-L 173SV1-FD2-BA, SV1-FM3-AV, SV1-FM4- BR, SV1-FM7-AG, SV2-FM2-C 174SV1-FD1-AH, SV1-FM7-CX, SV1-FD1-W, SV1-FD2-BG, SV1-FM10-AD, SV1-FM15-

X, SV1-FM4-BK, SV1-FM5-AH, SV1-FM6-

AC, SV2-FM7-R 175SV1-OT2-AO, SV1-PO1-AF, SV1-Pϒ2-V, SV1-SO1-BE

176SV1-Pϒ2-AZ, SV1-OT2-AD, SV1-SO1- BK, SV2-OT2-E 177SV2-FM15-I, SV2-FD2-G, SV2-FM14-M, SV2-FM1-AH, SV2-FM7-U, SV2-FM10-L, SV2-FD1-V, SV2-FM4-G

178SV1-FM4-CF, SV1-FM7-V, SV1-FD1-AS, SV1-FM5-AO, SV1-FM6-AB, SV2-FM4-J, SV2-FM9-Q, SV2-FM1-M, SV1-FM2-AT 179SV1-FM10-C, SV1-FM5-Q, SV1-FM4-CH, SV2-FM11-M, SV1-FD1-BE, SV1-FM14-

AN, SV1-FM2-AR, SV1-FM7-CI 180SV1-FM5-BG, SV2-FM4-F 181SV1-FD2-AZ, SV1-FM2-AO 182SV3-SL3-J, SV3-SL2-N, SV3-PT1-J, SV3-

Pϒ2-L, SV3-SL1-N, SV3-OT2-P, SV3-

Pϒ3-Q SV2-Pϒ2-G 183SV3-SL1-N 184SV2-FM6-H, SV2-FM9-M, SV2-FM2-K 185SV2-FM13-N, SV2-FM1-V, SV2-FM11-U 186SV1-FM6-AI, SY2-FM9-N, SV2-FM13-F 187SV2-FD1-N, SV2-FM10-J, SV2-FM1-R, SV2-FM6-G

188SV1-FM1-G, SV1-FD2-V, SV2-FM6-AJ, SV1-FM8-O, SV1-FM13-Q, SV2-FD1-P, SV2-FM10-F, SV2-FM9-AA, SV2-FM13-O, SV2-FM1-W, SV2-FM6-W

189SV1-FM13-AJ, SV1-FM15-AJ, SV2-FM2- L, SV2-FD1-M, SV2-FD2-E, SV2-FM5-J, SV2-FM11-G, SV2-FM12-F, SV2-FM14-F, SV2-FM15-N

190SV2-FD1-O, SV2-FM6-E, SV2-FM14-G, SV2-15-F, SV1-SL3-CI, SL1-OT1-CV, SV1-

OT2-AV, SV1-PO1-AG 191SV1-I-PT1-D, SV1-I-Pϒ1-V, SV1-Pϒ3-D, SV1-SL2-T, SV1-SL3-A, SV2-SL3-H

192 V1-PT1-Z, SV1-SL3-O, SV1-Pϒ1-D, SV1-

OT2-G

193SV1-SO1-AK, SV1-SL3-L, SV1-Pϒ1-W 194SV1-SL3-R, SV1-SL1-V, SV1-Pϒ3-M, SV1-

Pϒ2-AN

195SV1-PO1-W, SV1-Pϒ1-M, SV1-Pϒ3-ZT, SV1-SL1-I, SV1-SL2-AD, SV1-SL3-T, SV1-

OT1-S, SV1-SO1-AF 196SV1-Pϒ1-H, SV1-OT1-N, SV1- Pϒ2-H,

SV1-Pϒ3-C, SV1-SL3-Q SV1-SO1-Z 197SV1-Pϒ1-L, SV1-Pϒ3-A, SV1-OT1-T, SV1-

SL1-J, SV1-SL3-ZX 198SV1-Pϒ1-K, SV1-Pϒ3-ZS, SV1-SL2-1, SV1-

L3-I, SV1-SO1-O

199SV1-Pϒ1-G, SV1-PT1-H, SV1-SL2-ϒ 200SV1-SO1-AG 201SV1-PO1-U 202SV1-Pϒ2-L, SV1-SL1-EA, SV1-SL3-G 203SV1-SL1-N

204SV1-Pϒ2-J 205SV1-PT1-ZZ 206SV1-PT1-G, SV1-SL2-AC, SV1-SL3-B 207SV1- Pϒ2-A, SV1-Pϒ3-G, SV1-SL3-D, SV1-PO1-P

208SV1-FD1-O, SV1-FM9-CV, SV1-FM4-I, SV1-FM3-AT, SV1-FM13-N

209SV2-SL3-D, SV2-SL2-A, SV2-Pϒ2-E, SV2- PT1-A, SV2-SL3-B, SV2-OT1-A, SV2- OT2-A

210SV2-SL3-A

211SV2-PT1-B, SV2-SL3-C 212SV2-Pϒ3-A 213SV2-PO1-A, SV2-SL1-A 214SV2-PO1-B

215SV2-Pϒ2-A, SV2-OT1-AD 216SV2-Pϒ1-A, SV2-Pϒ2-C, SV2-Pϒ3-C, SV2-OT2-B, SV2-SO1-A

217 SV2-SO1-A 218 SV2-SL3-N, SV2-Pϒ2-B, SV2-Pϒ3-F 219 SV2-Pϒ1-C, SV2-Pϒ2-D, SV2-PT3-H 220 SV2-SL3-N, SV2-Pϒ2-B, SV2-Pϒ3-F 221 SV2-SL3-N

222SV1-PT1-K, OT2-R, SV1-SL2-B, SV1-SO1- CC, SV1-PO1-AO 223SV1-OT2-H SV1-PO1-ZZ, SV1-SO1-BR,

SV1-SL1-BO, SV2-Pϒ1-K

224SV1-OT2-L, SV2-SL3-AC, SV2-OT1-C 225SV1-OT1-BZ, SV1-Pϒ2-K, SV2-OT1-R, SV3-SL3-I

226SV1-PO1-F, SV1-SL2-AH, SV1-OT1-CG, SV1-SL1-F

227SV1-PO1-E, SV1-SL3-W, SV1-OT1-DF, SV1-Pϒ1-AF, SV1-SL1-E, SV1-SO1-CK, SV1-OT2-M, SV2-OT1-K 228SV1-OT1-DF

229SV1-OT2-J, SV1-SL3-BV, SV1-Pϒ1-ZZ, SV1-SL1-Q 230SV2-PT1-B, SV1-OT2-AS, SV1-PT1-B 231SV1-SL3-ϒ, SV1-SL1-I, SV1Pϒ2-D, SV2-

OT2-F, SV2-Pϒ11-BE 232SV1-OT1-X, SV1-SL1-D, SV1-Pϒ1-D,

SV2-OT1-L, SV2-Pϒ1-I, SV2-OT2-O, SV2- Pϒ3-L

233SV1-Pϒ1-A, SV1-Pϒ2-F, SV2-OT2-Q

234SV1-Pϒ3-AE, SV1-PT1-AA, SV1-OT2-N, SV1-SL3-CK, SV2-OT1-S, SV2-SL2-J, SV2-

SL1-H, SV2-PT1-L

235SV1-SL2-AS, SV2-SL2-I, SV3-SO1-E 236SV1-SL1-B 237SV2-PO1-G, SV2-OT1-M, SV2-Pϒ3-M 238SV2-SL3-AB, SV2-Pϒ2-AC 239SV1-SL3-CL, SV3-OT2-K, SV3-OT1-G,

SV3-PT1-F, SV3-SL3-G 240SV2-Pϒ2-N 241SV1-PT1-V, SV1-Pϒ2-AH, SV2-Pϒ3-K,

SV1-SL3-CP, SV2-SL1-J, SV1-PT1-O 242SV1-OT1-DB, SV1-SL3-CJ, SV1-Pϒ2-B, SV2-PT1-K, SV2-Pϒ3-O

243SV1-SL1-BI, SV1-SL2-AQ, SV2-OT1-J, SV2-SL2-E

244SV1-PT1-AD, SV1-OT2-AX, SV1-Pϒ3- AA, SV1-OT1-DE, SV1-Pϒ1-BB, SV1-SL1-

BM, SV2-PT1-N, SV2-Pϒ2-M, SV2-PO1-

H, SV2-OT2-P, SV2-Pϒ3-N

245SV1-PO1-O, SV1-Pϒ2-AO, SV1-SO1-CA, SV3-Pϒ2-J, SV3-OT2-T 246SV3-OT1-I, SV3-OT2-M, SV3-SL1-K, SV3- PT1-H, SV3-Pϒ1-1, SV3-Pϒ3-A

247SV3-Pϒ3-O, SV1-PT1-X, SV1-SL2-Aϒ 248SV3-OT2-R, SV3-SL2-J 249SV3-OT2-S, SV3-SL1-L, SV3-Pϒ2-O, SV3- PO1-L

250SV1-PO1-BG, SV1-SL1-BT, SV1-SL2-S, SV1-OT1-R, SV3-Pϒ2-N, SV3-SL2-L

251SV1-OT1-Z, SV3-PO1-H 252SV2-OT1-W, SV2-OT2-AH, SV2-Pϒ2-X 253SV2-SO1-G

254SV3-Pϒ1-G, SV3-Pϒ2-H, SV3-PO1-F, SV3-Pϒ1-G, SV3-SL2-H 255SV1-SO1-AA, SV2-PO1-F, SV3-SL2-J 256SV1-SO1-AA

257SV1-FM1-J, SV1-FM5-AX, SV1-FM9-BM, SV1-FM13-U, SV1-FM14-I

258SV1-FM1-H, SV1-FM4-AO, SV1-FM5- AR, SV1-FM7-AN, SV1-FM8-F, SV1-

FM10-I, SV1-FM11-AK, SV1-FM12-C, SV1-FM14-F

259SV1-FD1-AF, SV1-FM2-C, SV1-FM11-R 260SV1-FM1-ϒ, SV1-FM3-L, SV1-FM4-AK, SV1-FM5-CF, SV1-FM7-C, SV1-FM12-

AH, SV1-FM15-O 261SV1-FM4-CD, SV1-FM7-AZ 262SV1-FD1-I, SV1-FD2-M, SV1-FM1-AB, SV1-FM2-M, SV1-FM3-C, SV1-FM4-C, SV1-FM5-AE, SV1-FM7-I, SV1-FM8-AC, SV1-FM9-ϒ, SV1-FM12-L, SV1-FM13-X, SV1-FM14-ϒ, SV1-FM15-V

263SV1-FM9-Q, SV1-FM15-BF 264SV1-FM3-M, SV1-FM7-BE, SV1-FM9-AJ, SV1-FM15-AI

265SV1-FM2-T, SV1-FM4-G, SV1-FM7-CC 266SV1-FM4-Aϒ, SV1-FM2-V, SV1-FM15-T, SV1-FM1-AS, SV2-FM1-E, SV2-FM6-N

---------------- VOLUME 17, NUMBER 1, SPRING 2002 ---------- ------

167SV2-FM6-S, SV2-FM15-D, SV2-FM14-K,

SV2-FM11-O, SV2-FM13-L, SV2-FM9-V,

SV2-FM7-F, SV2-FM4-Q, SV2-FD2-I, SV2-

FM5-P, SV2-FM1-G, SV2-FM10-N, SV2-

FM12-Q 168SV1-FM5-BJ 169SV2-FM5-P 170SV1-FM14-AI, SVJ-FMJS-AQ, SV2-

FM10-O, SV2-FD2-J, SV2-FM6-T 171SV1-FM12-R, SV2-FM2-R, SV2-FM7-G,

SV2-FM5-Q 172SV1-FM11-AI, SV2-FM11-P, SV2-FM14-L 173SVJ-FD2-BA, SV1-FM3-AV, SV1-FM4-

BR, SV1-FM7-AG, SV2-FM2-C 174SVJ-FD1-AH, SV1-FM7-CX, SVJ-FDJ-W,

SV1-FD2-BG, SVJ-FMJO-AD, SVl-FMJS­

X, SVJ-FM4-BK, SVJ-FMS-AH, SV1-FM6-

AC, SV2-FM7-R 175SVJ-OT2-AO, SVJ-POJ-AF, SV1-PY2-V,

SVJ-S01-BE 176SVJ-PY2-AZ, SV1-OT2-AD, SVJ-SO1-

BK, SV2-OT2-E 177SV2-FM15-I, SV2-FD2-G, SV2-FM14-M,

SV2-FM1-AH, SV2-FM7-U, SV2-FM10-L,

SV2-FD1-V, SV2-FM4-G 178SVJ-FM4-CF, SV1-FM7-V, SVl-FDl-AS,

SVJ-FMS-AO, SVJ-FM6-AB, SV2-FM4-J,

SV2-FM9-Q, SV2-FMJ-M, SV1-FM2-AT 179SV1-FM10-C, SVJ-FMS-Q, SVJ-FM4-CH,

SV2-FM11-M, SVl-FDJ-BE, SV1-FM14-

AN, SV1-FM2-AR, SVJ-FM7-CI 180SV1-FM5-BG, SV2-FM4-F 181SV1-FD2-AZ, SV1-FM2-AO 182SV3-SL3-J, SV3-SL2-N, SV3-PT1-J, SV3-

PY2-L, SV3-SL1-N, SV3-OT2-P, SV3-

PY3-Q, SV2-PY2-G 183SV3-SL1-N 184SV2-FM6-H, SV2-FM9-M, SV2-FM2-K 185SV2-FM13-N, SV2-FMJ-V, SV2-FM11-U 186SVJ-FM6-AI, SV2-FM9-N, SV2-FM13-F 187SV2-FD1-N, SV2-FM10-J, SV2-FM1-R,

SV2-FM6-G 188SV1-FMJ-G, SV1-FD2-V, SV2-FM6-AJ,

SVl-FMB-O, SV1-FM13-Q, SV2-FD1-P,

SV2-FM10-F, SV2-FM9-AA, SV2-FM13-O,

SV2-FM1-W, SV2-FM6-W 189SV1-FM13-AJ, SVJ-FMJS-AJ, SV2-FM2-

L, SV2-FD1-M, SV2-FD2-E, SV2-FM5-J, SV2-FM11-G, SV2-FM12-F, SV2-FM14-F,

SV2-FM15-N 190SV2-FD1-O, SV2-FM6-E, SV2-FM14-G,

SV2-15-F, SVJ-SL3-CI, SLl-OTl-CV, SV1-

OT2-AV, SVl-POl-AG 191SVJ-J-PT1-D, SVJ-I-PYJ-V, SV1-PY3-D,

SV1-SL2-T, SVJ-SL3-A, SV2-SL3-H 192 Vl-PTl-Z, SV1-SL3-O, SVl-PYl-D, SV1-

OT2-G 193SVJ-SO1-AK, SV1-SL3-L, SVJ-PYl-W 194SV1-SL3-R, SVl-SLl-V, SVJ-PY3-M, SV1-

PY2-AN

195SV1-PO1-W, SVl-PYl-M, SV1-PY3-ZT,

SVl-SLl-I, SV1-SL2-AD, SVJ-SL3-T, SVJ­

OTJ-S, SVJ-SO1-AF 196SVJ-PYJ-H, SVJ-OTJ-N, SVl- PY2-H,

SVJ-PY3-C, SV1-SL3-Q, SVJ-SO1-Z 197SV1-PY1-L, SVJ-PY3-A, SVJ-OTJ-T, SVl­

SLl-], SVJ-SL3-ZX 198SV1-PYJ-K, SV1-PY3-ZS, SVJ-SL2-I, SV1-

L3-I, SVl-SO1-O 199SV1-PYJ-G, SVl-PTl-H, SVJ-SL2-Y 200sv1-sO1-AG 201SVJ-PO1-U 202SVJ-PY2-L, SVJ-SLl-EA, SV1-SL3-G 203SV1-SL1-N 204SV1-PY2-J 205sv1-PT1-zz 206SV1-PTJ-G, SV1-SL2-AC, SV1-SL3-B 207SVJ- PY2-A, SV1-PY3-G, SVJ-SL3-D,

SVl-POl-P 208SV1-FDJ-O, SV1-FM9-CV, SV1-FM4-I,

SV1-FM3-AT, SVJ-FM13-N 209SV2-SL3-D, SV2-SL2-A, SV2-PY2-E, SV2-

PT1-A, SV2-SL3-B, SV2-OTl-A, SV2-

OT2-A 210SV2-SL3-A 211SV2-PTJ-B, SV2-SL3-C 212SV2-PY3-A 213SV2-PO1-A, SV2-SL1-A 214SV2-PO1-B 215SV2-PY2-A, SV2-OTl-AD 216SV2-PY1-A, SV2-PY2-C, SV2-PY3-C,

SV2-OT2-B, SV2-SO1-A 217 SV2-SO1-A 218 SV2-SL3-N, SV2-PY2-B, SV2-PY3-F 219 SV2-PY1-C, SV2-PY2-D, SV2-PY3-H 220 SV2-SL3-N, SV2-PY2-B, SV2-PY3-F 221 SV2-SL3-N 222SV1-PTJ-K, OT2-R, SVJ-SL2-B, SVJ-SO1-

cc, SVJ-POl-AO 223SVJ-OT2-H, SVl-POJ-ZZ, SVJ-SO1-BR,

SVJ-SLl-BO, SV2-PY1-K 224SV1-OT2-L, SV2-SL3-AC, SV2-OTl-C 225SV1-OTJ-BZ, SVJ-PY2-K, SV2-OT1-R,

SV3-SL3-I 226SV1-PO1-F, SV1-SL2-AH, SVJ-OTl-CG,

SVJ-SLl-F 227SV1-PO1-E, SVJ-SL3-W, SVJ-OTl-DF,

SVl-PYl-AF, SVl-SLl-E, SVJ-SO1-CK, SV1-OT2-M, SV2-OT1-K

228SVJ-OTl-DF 229SV1-OT2-J, SVJ-SL3-BV, SVl-PYl-ZZ,

SVJ-SLl-Q 230sv2-PT1-B, SVJ-OT2-AS, SVl-PTl-B 231SVJ-SL3-Y, SVJ-SLl-I, SVJPY2-D, SV2-

OT2-F, SV2-PYJ-BE 232SV1-OTl-X, SVl-SLJ-D, SVl-PYl-D,

SV2-OTl-L, SV2-PY1-I, SV2-OT2-O, SV2-

PY3-L 233SV1-PYJ-A, SVJ-PY2-F, SV2-OT2-Q

41

234SVJ-PY3-AE, SVl-PTl-AA, SVJ-OT2-N, SVJ-SL3-CK, SV2-OTl-S, SV2-SL2-J, SV2-

SL1-H, SV2-PT1-L 235SV1-SL2-AS, SV2-SL2-I, SV3-SO1-E 236SV1-SL1-B 237SV2-PO1-G, SV2-OT1-M, SV2-PY3-M 238SV2-SL3-AB, SV2-PY2-AC 239SV1-SL3-CL, SV3-OT2-K, SV3-OT1-G,

SV3-PT1-F, SV3-SL3-G 240SV2-PY2-N 241SVJ-PTJ-V, SV1-PY2-AH, SV2-PY3-K,

SVJ-SL3-CP, SV2-SL1-J, SVl-PTl-O 242SVJ-OTJ-DB, SV1-SL3-CJ, SVJ-PY2-B,

SV2-PT1-K, SV2-PY3-O 243SVJ-SL1-BI, SV1-SL2-AQ, SV2-OTl-J,

SV2-SL2-E 244SV1-PT1-AD, SV1-OT2-AX, SV1-PY3-

AA, SVJ-OTJ-DE, SVl-PYJ-BB, SVl-SLl­

BM, SV2-PTJ-N, SV2-PY2-M, SV2-PO1-

H, SV2-OT2-P, SV2-PY3-N 245SV1-PO1-O, SV1-PY2-AO, SVJ-SO1-CA,

SV3-PY2-J, SV3-OT2-T 246SV3-OTl-I, SV3-OT2-M, SV3-SL1-K, SV3-

PT1-H, SV3-PY1-1, SV3-PY3-A 247SV3-PY3-O, SVl-PTl-X, SVJ-SL2-AY 248SV3-OT2-R, SV3-SL2-J 249SV3-OT2-S, SV3-SL1-L, SV3-PY2-O, SV3-

PO1-L 250svl-POJ-BG, SVl-SLl-BT, SV1-SL2-S,

SVl-OTl-R, SV3-PY2-N, SV3-SL2-L 251SV1-OT1-Z, SV3-PO1-H 252SV2-OTl-W, SV2-OT2-AH, SV2-PY2-X 253SV2-SO1-G 254SV3-PYJ-G, SV3-PY2-H, SV3-PO1-F,

SV3-PY1-G, SV3-SL2-H 255SVJ-SO1-AA, SV2-PO1-F, SV3-SL2-J 256sv1-so1-AA 257SVJ-FMJ-J, SVl-FMS-AX, SV1-FM9-BM,

SV1-FM13-U, SV1-FM14-I 258SVJ-FMJ-H, SV1-FM4-AO, SVl-FMS­

AR, SV1-FM7-AN, SV1-FM8-F, SVJ­

FMJ0-I, SVl-FMll-AK, SV1-FM12-C,

SV1-FM14-F 259SV1-FD1-AF, SVJ-FM2-C, SVl-FMll-R 260svJ-FMJ-Y, SVJ-FM3-L, SV1-FM4-AK,

SVJ-FMS-CF, SV1-FM7-C, SVJ-FM12-

AH, SVJ-FMlS-O 261SVJ-FM4-CD, SV1-FM7-AZ 262SV1-FD1-I, SV1-FD2-M, SVl-FMl-AB,

SV1-FM2-M, SV1-FM3-C, SV1-FM4-C,

SVJ-FMS-AE, SV1-FM7-I, SV1-FM8-AC, SV1-FM9-Y, SV1-FM12-L, SV1-FM13-X,

SV1-FM14-Y, SV1-FM15-V 263SV1-FM9-Q, SV1-FM15-BF 264SV1-FM3-M, SVJ-FM7-BE, SV1-FM9-AJ,

SVJ-FMJS-AI 265SV1-FM2-T, SV1-FM4-G, SV1-FM7-CC 266SV1-FM4-AY, SV1-FM2-V, SV1-FM15-T,

SVl-FMl-AS, SV2-FM1-E, SV2-FM6-N

Downloaded from foa.sagepub.com at FLORIDA INTERNATIONAL UNIV on June 16, 2015

42

267SV1-FD1-ANSV1-FD2-O, SV1-FM1-AD, SV1-FM2-ϒ, SV1-FM3-AF, SV1-FM4-

AJ, SV1-FM11-AN, SV1-FM13-G, SV1- FM14-O, SV1-FM15-AR 218SV1-FD1-AG, SV1-FD2-U, SV1-FM3-AB, SV1-FM5-AM, SV1-FM7-CA, SV1-FM8-K, SV1FM11-AB, SV1-FM12-AJ, SV1- FM14-H, SV1-FM15-AK, SV2-FM12-E, SV2-FM10-D, SV1-SL2-H, SV1-Pϒ3-AN, SV1-POI-Zϒ

269SV1-FM11-AM, SV1-FM5-Aϒ, SV1-FM9- CG

270SV2-FM2-H, SV2-FM11-F, SV2-FM12-D, SV2-FM13-E, SV2-FM15-J 271SV2-FD1-L, SV2-FD2-D, SV2-FM7-M, SV2-FM11-F

272SV2-FD2-D

REFERENCES

American Psychiatric Association. (1994). Diagnostic and statistical manual of mental disorders (4th ed.). Washington, DC: Au- thor.

Burger, R. A., & Warren, R. P. (1998). Pos- sible immunogenetic basis for autism. Men- tal Retardation and Developmental Dis- abilities Research Reviews, 4, 137-141.

Campbell, M., Schopler, E., Cueva, J. E., & Hallin, A. (1996). Treatment of autistic dis- order. Journal of American Academy of Child and Adolescent Psychiatry, 35, 134- 143.

Cook, E. H. (1998). Genetics of autism. Mental Retardation and Developmental Disabilities Research Reviews, 4, 113-120.

Cunningham, C. C., Morgan, P. A., & McGucken, R. B. (1984). Down’s syn- drome : Is dissatisfaction with disclosure of

diagnosis inevitable? Developmental Medi- cine and Child Neurology, 26, 33-39.

Dunst, C., Trivette, C., & Deal, A. (1988). Enabling and empowering families. Cam- bridge, MA: Brookline Books.

Filipek, P.A., Accardo, P. J., Baranek, G. T., Cook, E. H., Jr., Dawson, G., Gordon, B., et al. (1999). The screening and diagnosis of autistic spectrum disorders. Journal of

Autism and Developmental Disorders, 29, 439—484.

Fine, M., & Gardner, A. (1994). Collabora- tive consultation with families of children

with special needs: Why bother? Journal of Educational and Psychological Consultation, 5, 283-308.

Fine, M. J., & Simpson, R. L. (2000). Col- laboration with parents and families of chil- dren and youth with exceptionalities (2nd ed.). Austin, TX: PRO-ED.

Greenberg, L. W., Jewett, L. S., Gluck, R. S., Champion, L. A., Leikin, S. L., Altieri, M. F., & Lipnick, R N. (1984). Giving in- formation for a life threatening diagnosis. American Journal of Diseases of Children, 138, 649-653.

Gresham, F. M., Beebe-Frankenberger, M. R, & MacMillian, D. L. (1999). A se- lective review of treatments for children

with autism: Description and methodolog- ical considerations. School Psychology Review, 28, 559—575.

Howlin, P. (1998). Practitioner review: Psy- chological and educational treatments for autism. Journal of Child Psychiatry, 39, 307-322.

Jedlicka-Kohler, I., Gotz, M., & Eichler, I. (1996). Parents’ recollection of the initial communication of the diagnosis of cystic fi- brosis. Pediatrics, 97, 204-209.

Konstantareas, M. M., & Homatidis, S.

(1999). Chromosomal abnormalities in a series of children with autistic disorder.

Journal of Autism and Developmental Dis- orders, 29, 275-285.

Lincoln, Y. S., & Guba, E. G. (1985). Natu- ralistic inquiry. Newbury Park, CA: Sage.

Lord, C., & Risi, S. (1998). Frameworks and methods in diagnosing autism spectrum disorders. Mental Retardation and Devel-

opmental Disabilities Research Reviews, 4, 90-96.

Myers, B. A. (1983). The informing inter- view : Enabling parents to "hear" and cope with bad news. American Journal of Dis- eases of Children, 137, 572-577.

Pueschel, S. M., (1985). Changes of counsel- ing practices at the birth of a child with

Down syndrome. Applied Research in Men- tal Retardation, 6, 99—108.

Quittner, A. L., DiGirolamo, A. M., Michel, M., & Eigen, H. (1992). Parental response to cystic fibrosis: A contextual analysis of the diagnosis phase. Journal of Pediatric Psychology, 17, 683—704.

Rogers, S. J. (1998). Empirically supported comprehensive treatments for young chil- dren with autism. Journal of Clinical Child Psychology, 27, 168-179.

Seligman, M., & Darling, R. B. (1997). Or- dinary families, special children (2nd ed.). New York: Guilford Press.

Sharp, M. C., Strauss, R. P., & Lorch, S. C. (1992). Communicating medical bad news: Parents’ experiences and preferences. Jour- nal of Pediatrics, 121, 539-546.

Shea, V. (1993). Interpreting results to par- ents of preschool children. In E. Schopler, M. Van Bourgondien, & M. Bristol (Eds.), Preschool issues in autism (pp.185-198). New York: Plenum Press.

Tanguay, P. E. (2000). Pervasive develop- mental disorders: A 10 year review. Journal of American Academy of Child and Adoles- cent Psychiatry, 39, 1079-1095.

Turnbull, A. P., & Turnbull, H. R. (1997). Families, professionals and exceptionalities. Upper Saddle River, NJ: Prentice Hall.

Turner, S., & Sloper, P. (1992). Pediatricians’ practice in disclosure and follow-up of se- vere physical disability in young children. Developmental Medicine and Child Neurol- ogy, 34, 348-358.

Webber, J., Simpson, R L., & Bentley, J. K. (2000). Parents and families of children with autism. In M. J. Fine & R L. Simpson (Eds.), Collaboration with parents and fam- ilies of children and youth with exceptionali- ties (pp. 303-324). Austin, TX: PRO-ED.

Wing, L. (1996). Autistic spectrum disorders. British Medical Journal, 312, 327-328.

Wise, P. S. (1995). Best practices when com- municating with parents. In A. Thomas & J. Grime (Eds.), Best practices in school psy- chology (pp. 279-287). Washington, DC: National Association of School Psycholo- gists.

FOCUS ON AUTISM AND OTHER DEVELOPMENTAL DISABILITIES

42

267SV1-FD1-AN, SV1-FD2-0, SVl-FMl-AD, SV1-FM2-Y, SV1-FM3-AF, SV1-FM4- AJ, SVl-FMll-AN, SV1-FM13-G, SV1- FM14-0, SV1-FM15-AR

268SVJ-FDJ-AG, SVJ-FD2-U, SVJ-FM3-AB, SV1-FM5-AM, SVJ-FM7-CA, SV1-FM8-K, SVlFMll-AB, SV1-FM12-AJ, SV1- FM14-H, SV1-FM15-AK, SV2-FM12-E, SV2-FM10-D, SV1-SL2-H, SVJ-YY-3-AN, SVl-POl-ZT

269SV1-FM11-AM, SV1-FM5-AY, SV1-FM9- CG

270SV2-FM2-H, SV2-FM11-F, SV2-FM12-D, SV2-FM13-E, SV2-FM15-J

271SV2-FD1-L, SV2-FD2-D, SV2-FM7-M, SV2-FM11-F

272SV2-FD2-D

REFERENCES

American Psychiatric Association. ( 1994). Diagnostic and statistical manual of mental disorders (4th ed.). Washington, DC: Au­ thor.

Burger, R. A., & Warren, R. P. (1998). Pos­ sible immunogenetic basis for autism. Men­ tal Retardation and Developmental Dis­ abilities Research Reviews, 4, 137-141.

Campbell, M., Schopler, E., Cueva, J.E., & Hallin, A. (1996 ). Treatment ofautistic dis­ order. Journal of American Academy of Child and Adolescent Psychiatry, 35, 134- 143.

Cook, E. H. (1998). Genetics of autism. Mental Retardation and Developmental Disabilities Research Reviews, 4, 113-120.

Cunningham, C. C., Morgan, P. A., & McGucken, R. B. (1984). Down's syn­ drome: Is dissatisfaction with disclosure of diagnosis inevitable? Developmental Medi­ cine and Child Neurology, 26, 33-39.

Dunst, C., Trivette, C., & Deal, A. (1988). Enabling and empowering families. Cam­ bridge, MA: Brookline Books.

Filipek, P.A., Accardo, P. J., Baranek, G. T., Cook, E. H., Jr., Dawson, G., Gordon, B., et al. (1999). The screening and diagnosis of autistic spectrum disorders. Journal of

Autism and Developmental Disorders, 29, 439---484.

Fine, M., & Gardner, A. (1994). Collabora­ tive consultation with families of children with special needs: Why bother? Journal of Educational and Psychological Consultation, 5, 283-308.

Fine, M. J., & Simpson, R. L. (2000). Col­ laboration with parents and families of chil­ dren and youth with exceptionalities (2nd ed.). Austin, TX: PRO-ED.

Greenberg, L. W., Jewett, L. S., Gluck, R. S., Champion, L. A., Leik:in, S. L., Altieri, M. F., & Lipnick, R. N. (1984). Giving in­ formation for a life threatening diagnosis. American Journal of Diseases of Children, 138, 649-653.

Gresham, F. M., Beebe-Frankenberger, M. R., & MacMillian, D. L. (1999). Ase­ lective review of treatments for children with autism: Description and methodolog­ ical considerations. School Psychology Review, 28, 559-575.

Howlin, P. (1998). Practitioner review: Psy­ chological and educational treatments for autism. Journal of Child Psychiatry, 39, 307-322.

Jedlicka-Kohler, I., Gotz, M., & Eichler, I. (1996). Parents' recollection of the initial communication of the diagnosis of cystic fi­ brosis. Pediatrics, 97, 204-209.

Konstantareas, M. M., & Homatidis, S. ( 1999). Chromosomal abnormalities in a series of children with autistic disorder. Journal of Autism and Developmental Dis­ orders, 29, 275-285.

Lincoln, Y. S., & Guba, E.G. (1985). Natu­ ralistic inquiry. Newbury Park, CA: Sage.

Lord, C., & Risi, S. (1998). Frameworks and methods in diagnosing autism spectrum disorders. Mental Retardation and Devel­ opmental Disabilities Research Reviews, 4, 90-96.

Myers, B. A. (1983). The informing inter­ view: Enabling parents to "hear" and cope with bad news. American Journal of Dis­ eases of Children, 137, 572-577.

Pueschel, S. M., (1985 ). Changes of counsel­ ing practices at the birth of a child with

Down syndrome. Applied Research in Men­ tal Retardation, 6, 99-108.

Quittner, A. L., DiGirolamo, A. M., Michel, M., & Eigen, H. (1992). Parental response to cystic fibrosis: A contextual analysis of the diagnosis phase. Journal of Pediatric Psychology, 17, 683-704.

Rogers, S. J. ( 1998). Empirically supported comprehensive treatments for young chil­ dren with autism. Journal of Clinical Child Psychology, 27, 168-179.

Seligman, M., & Darling, R. B. (1997). Or­ dinary families, special children (2nd ed.). New York: Guilford Press.

Sharp, M. C., Strauss, R. P., & Lorch, S. C. (1992). Communicating medical bad news: Parents' experiences and preferences. Jour­ nal of Pediatrics, 121, 539-546.

Shea, V. (1993). Interpreting results to par­ ents of preschool children. In E. Schopler, M. Van Bourgondien, & M. Bristol (Eds.), Preschool issues in autism (pp.185-198). New York: Plenum Press.

Tanguay, P. E. (2000). Pervasive develop­ mental disorders: A 10 year review. Journal of American Academy of Child and Adoles­ cent Psychiatry, 39, 1079-1095.

Turnbull, A. P., & Turnbull, H. R. (1997). Families, professionals and exceptionalities. Upper Saddle River, NJ: Prentice Hall.

Turner, S., & Sloper, P. (1992). Pediatricians' practice in disclosure and follow-up of se­ vere physical disability in young children. Developmental Medicine and Child Neurol­ ogy, 34, 348-358.

Webber, J., Simpson, R. L., & Bentley, J. K. (2000). Parents and families of children with autism. In M. J. Fine & R. L. Simpson (Eds.), Collaboration with parents and fam­ ilies of children and youth with exceptionali­ ties (pp. 303-324). Austin, TX: PRO-ED.

Wing, L. ( 1996 ). Autistic spectrum disorders. British Medical Journal, 312, 327-328.

Wise, P. S. (1995). Best practices when com­ municating with parents. In A. Thomas & J. Grime (Eds.), Best practices in school psy­ chology (pp. 279-287). Washington, DC: National Association of School Psycholo­ gists.

Downloaded from foa.sagepub.com at FLORIDA INTERNATIONAL UNIV on June 16, 2015

43

APPENDIX Codes

A. Phase of Study: SV-1 Site Visit 1 (interview 1) SV-2 Site Visit 2 (interview 2) SV-3 Site Visit 3 (interview 3)

B. Participants: (followed by the number) Family Members FM Mother (1-15) FD Father (1-2)

- Professionals &dquo;

PY Psychologist (1-3) ’

,..

PT Physical Therapist (1) ’

°

OT Occupational Therapist (1-2) .. SL Speech/Language Pathologist (1-3) .

.

SW Social Worker (1) . ’

.

’ ’

PO Other Professional (1 ) ’°

-

C. Individual Idea or Thought: the individual idea or thought obtained from the interview (e.g., M, AQ, BX)

For example, SV1-PY2-K = individual idea or thought (K) obtained during Psychologist 2’s Site Visit 1 interview

------------------ VOLUME 17, NUMBER 1, SPRING 2002 ------------------

A. Phase of Study: SV-1 Site Visit 1 (interview 1) SV-2 Site Visit 2 (interview 2) SV-3 Site Visit 3 (interview 3)

B. Participants: (followed by the number) Family Members FM Mother (1-15) FD Father (1-2)

Professionals PY Psychologist (1-3) PT Physical Therapist (1) OT Occupational Therapist (1-2) .. Speech/Language Pathologist (1-3) SW Social Worker (1) PO Other Professional (1)

APPENDIX Codes

C, Individual Idea or Thought: the individual idea or thought obtained from the interview (e.g., M, AO, BX)

For example, SV1-PY2-K = individual idea or thought (K) obtained during Psychologist 2's Site Visit 1 interview

43

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