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. Author manuscript; available in PMC: 2016 Jun 1.
Published in final edited form as: W V Med J. 2014 Sep-Oct;110(5):32–39.

Child’s Autism Severity: Effect on West Virginia Caregiver Satisfaction with School Services

Rini Vohra 1, Suresh Madhavan 2, Rahul Khanna 3, Barbara Becker-Cottrill 4
PMCID: PMC4887845  NIHMSID: NIHMS789855  PMID: 25643472

Abstract

Survey data was collected from 301 primary caregivers of children with autism registered at West Virginia Autism Training Center (WV ATC), to examine the impact of child’s autism severity on caregiver satisfaction with school services. Satisfaction with six school services was measured via a 3-point Likert scale: speech-language therapy, occupational therapy, social skills training, physical therapy, behavioral interventions, and assistance in improving study skills. Ordinal logistic regressions showed that caregivers of children with high autism severity were less likely to be satisfied with school services, as compared to caregivers of children with low autism severity (OR’s from 0.45 to 0.39). No significant differences existed in caregiver satisfaction with services between high and low autism severity groups, after addition of caregiver burden to the model. Findings suggest that child’s autism severity is a significant predictor of caregiver satisfaction with school services, and should be considered during development of child’s Individualized Education Program (IEP) and evaluation of caregiver satisfaction with the IEP.

Introduction

Children with autism spectrum disorders (ASD) may experience multiple challenging behaviors1-3 and intellectual disabilities4-6 which hamper their communicating, social, and learning capabilities.7-10 ASD severity can be defined by the child’s cognitive level, ability to relate to surroundings, hyperirritability, self-injurious behaviors, and affective responses which can be assessed using parent/clinician reports on instruments such as Autism Behavior Checklist (ABC),11 and Childhood Autism Rating Scale (CARS).12

The Individuals with Disabilities Education Act (IDEA, Public Law No. 108-446, 118 Stat. 2647, December 3 2004) ensures provision of an IEP in school (a legal document, usually designed by a group of educators, parents, and/or advocates), which states the developmental intervention services needed to meet the learning needs of school-aged children with a disability (Part B).13 School systems bear high costs for children with disabilities such as ASD who form 18.9% (second highest after “multiple disabilities”) of the “high expenditure elementary school students”,14 but the rate of caregiver satisfaction with school services is shown to vary significantly acrooss studies.15-18 A telephone survey of families of children with ASD (N = 45), showed that only 36% of the parents reported a high level of satisfaction with their child’s special education services (SES).18 In comparison, some studies have observed a moderate to high level of satisfaction with school services (as high as 96%).15, 19 When compared to caregivers of children with other disabilities, caregivers of children with ASD report greater likelihood of dissatisfaction with the level of communication about their child’s role and about other services offered by the school.20

With the increase in prevalence of ASD21 and need of school services by these children, the financial/resources burden on the state schools is also expected to rise.22 It is critical to examine which sub-groups of caregivers of children with ASD are less satisfied than the others, in an effort to provide better communication and better services to these sub-groups and reduce reports of caregiver’s unmet needs. However, to date, only one study has investigated the impact of functional independence in children with ASD on parent’s level of unmet service needs.23 This study was restricted by a small sample size (N = 97) and was non-specific to any type of service.

The current study will examine the association of child’s ASD severity with caregiver reported satisfaction, with six school services and the effect of caregiver burden on this association. Greater special services’ needs14,24 along with the child’s disability such as ASD25,26 affect caregiver mental health27,28 which may lead to greater caregiver burden,29 aggravation,30 and poor caregiver health outcomes.29,31 Caregivers also relate their perceptions about services to individual or family needs.32 Therefore, it is possible that caregivers of children with greater ASD severity may express greater needs as compared to caregivers of children with lower ASD severity, which may exceed the abilities of school systems. In these cases, the school may not be able to provide services which are commensurate with the child’s needs. Such unmet needs may lower caregivers’ likelihood of satisfaction with school services. Therefore, the current study hypothesizes that caregivers of children with high ASD severity will report lower satisfaction with services, and caregiver burden may partially explain this association.

Methods

Participants and Procedures

This research is part of a larger study conducted among primary caregivers of children with ASD registered with the West Virginia Autism Training Center (WV ATC). In the larger study, a total of 1,039 families of children with autism (aged 18 years or below) were identified and mailed (fourth quarter of 2009) a detailed survey.29 A total of 304 usable surveys were received (usable response rate = 35%). For the current study, three respondents who did not respond to the service satisfaction scale were deleted, leaving a final sample size of N = 301. Description of the sample characteristics is presented in Table 1. The survey and informed consent form were approved by the West Virginia University Institutional Review Board. Further details on study procedure and participants have been described in Khanna et al. (2012).41

Table 1. Sample Description (n = 301).

N %
Total 301 100
Child Characteristics
Gender
      Male 250 83.1
      Female 51 16.9
Age
      <5 years 21 7.0
      5 years – Less than 10 years 134 44.5
      10 years- Less than 15 years 126 41.9
      15-18 years 20 6.6
Primary Diagnosis
      Classical Autism/AD 159 52.8
      PDD-NOS 65 21.6
      Asperger’s Syndrome 77 25.6
Severity
      High ASD severity 132 43.9
      Low ASD severity 169 56.1
      High behavioral problems¶¶ 250 83.1
      Low behavioral problems 51 16.9
Caregiver Characteristics
Highest Level of Education
      Less than high school 12 4.0
      High school graduate 78 25.9
      Greater than high school 211 70.1
Employment Status
      Employed full time 115 38.2
      Employed part-time 35 11.6
      Home-maker/Student/Other 151 50.2
Annual Income
      <$25,000 91 30.2
      $25,000- $49,000 76 25.2
      $50,000-$99,999 103 34.2
      $100,000 or more 31 10.3
Burden
      High 99 32.9
      Medium 102 33.9
      Low 100 33.2
School District Services
      Speech/Language therapy 248 82.4
      Occupational Therapy 205 68.1
      Social Skills Training 160 53.2
      Physical Therapy 113 37.5
      Behavioral Interventions 127 42.2
      Assistance in improving study skills 155 51.5

Note. Respondents may have used more than one service at a time,

Child’s extent of ASD severityas scored on CARS-P.

¶¶

Child’s extent of Behaviorai Problems as scored on Developmental Behavior Checkiist-P24. PDD-NOS Pervasive Developmental Disorders-Not Otherwise Specified, AD Autistic Disorder.

Measures

Child’s ASD severity (Key independent variable)

The 14-item CARS-P33 is a derivative of 15-item CARS12 used for assessing caregiver’s perceptions of child’s functional status and level of impairments. Items on CARS-P assess ASD severity using constructs such as social impairments (example: relationships with people, imitation, verbal, and non-verbal communication), negative emotionality (example: emotional responses, adaptation to change, and anxiety), and distorted sensory responses example: visual responses, listening responses, and other responses). Severity is rated on a 4-point scale ranging from 1 (normal for chronological age) to 4 (severely abnormal for chronological age). An overall functioning score is calculated by summing the ratings on 14 items, with higher scores corresponding to higher ASD severity perceived by the caregivers. In the context of original scale-CARS (15 items), generally a score of 37 or above is indicative of higher functional limitations and greater autistic behaviors.34. The instrument has good internal consistency (0.85-Cronbach’s alpha) and split-half reliability (0.86).28. For the current study, CARS-P demonstrated a good internal consistency of 0.89.

Caregiver Burden

The 21-item Caregiver Strain Questionnaire (CGSQ)35 was used to measure caregiver burden. Items on the scale are measured on a 5-point Likert scale ranging from 1 (not at all a problem) to 5 (very much a problem). The instrument assesses objective (11 items), subjective internalized (6 items), and subjective externalized (4 items) burden. Scores for each of three domains of caregiver burden are calculated by taking the mean of relevant items. Scores on the three domains are summed to calculate a total burden score.35 The psychometric properties of CGSQ have been established with demonstration of excellent internal consistency (Cronbach’s alpha- 0.93).35 The CGSQ demonstrated an excellent internal consistency of 0.94 in this study.

Other independent variables

Child characteristics such as gender (male, female), age (<5 years, 5-9 years, 10-14 years, 15 years and above), caregiver reported child’s ASD diagnosis (Classical Autism, Asperger’s syndrome, and Pervasive developmental disorder-not otherwise specified) were included in the study. Caregiver characteristics included employment status (employed full-time, part-time, and home-maker/student/other) and annual income (<$25,000, $25,000-$49,000, $50,000-$99,000, and $100,000 and above).

Satisfaction with School Services (Dependent variable)

For the current study, survey participants were asked to report the provision (“Yes” or “No”) of six different types of autism-related services by their school district. Respondents who marked “Yes” were further asked to report the level of satisfaction with each service on a 5-point Likert type scale ranging from 1 (Extremely Dissatisfied) to 5 (Extremely Satisfied). These services primarily included school provided developmental and behavioral interventions such as speech-language therapy (for improvement in verbal and non-verbal communication via use of play and/or pictures and symbols), occupational therapy (includes sensory integration techniques to enhance functional responses to sensory stimulations), social skills training (for facilitating social interactions and may include peer training, social groups, and social stories), physical therapy, behavioral interventions (includes applied behavior analysis and other behavioral interventions), and assistance in improving study skills. The type of school district services utilized by the study participants are listed in Table 1. Due to small cell sizes, the 5-point Likert type satisfaction scale was collapsed into a 3-point Likert type scale (Dissatisfied, Neutral, and Satisfied).

Data Analysis

CARS-P scores

The scores were converted to their respective dichotomized categorical variables. Since, for CARS (15 items) scores of 37 or above are indicative of poor functioning,34 scores of 35 or above on CARS-P (14 items) were placed in the high ASD severity group.

Caregiver Burden Score

Caregiver burden was divided into tertiles (high, medium, and low) ranging from a lowest mean score of 6.60 to a highest mean score of 13.60 on a scale with a maximum score of 15.

Tests of Associations

Pearson’s chi-square test of independence was used to assess the association of child and caregiver characteristics with child’s ASD severity. Cochran - Mantel Haenszal Chi square analysis (for ordinal 3-point satisfaction scale) was performed to examine the association of child and caregiver characteristics with satisfaction with school services. Integer scores were assigned to the ordinal outcome.36

Ordinal Logistic Regression Analysis

Since the satisfaction scale was a 3-point Likert measure, an ordinal logistic regression or proportional odds model37 was used to examine the association of child’s ASD severity with the satisfaction with school services. Proportional odds assumption was checked via score test, where p-value<0.05 was considered as a violation. Three separate models were run: 1) A basic model (Model 1) with child’s ASD severity only; 2) The basic model adjusted for child age, ASD diagnosis, caregiver income, and caregiver employment status (Model 2); and 3) Model 2 adjusted for caregiver burden (Model 3). All the analyses were performed using SAS version 9.3 (SAS Institute Inc.). The proportional odds test was violated for the dependent variable: satisfaction with “assistance in improving study skills” service and therefore the association of this variable with child’s ASD severity is not presented here.

Results

Table 2 shows the distribution of responses of caregivers of children with ASD on a 3-point scale of satisfaction with five school district services. In general, the majority of the study participants reported being either satisfied or neutral with a five school services. Most caregivers were satisfied with speech/language therapy (n = 122, 49.1%) and dissatisfied with behavioral interventions (n = 55, 43.3%).

Table 2. Distribution of responses on school services’ satisfaction scale by caregivers of children with ASD (n = 301).

Satisfied n (%) Neutral n (%) Dissatisfied n (%) N
Speech/Language therapy 122 (49.1%) 79 (31.9%) 47 (19.0%) 248
Occupational Therapy 84 (41.0%) 63 (30.7%) 58 (28.3%) 205
Social Skills Training 62 (38.7%) 45 (28.2%) 53 (33.1%) 160
Physical Therapy 39 (34.5%) 36 (31.9%) 38 (33.6%) 113
Behavioral Interventions 37 (29.1%) 35 (27.6%) 55 (43.3%) 127

Tests of Associations

Child’s ASD severity

The association between selected child and caregiver characteristics with the child’s ASD severity is shown in Table 3. Child’s ASD severity was associated with child’s age (P <0.01), caregiver reported child’s ASD diagnosis (P<0.001), caregiver employment status (P <0.01), and caregiver burden (P <0.001).

Table 3. Description of selected child and caregiver characteristics in the sample by child’s ASD severity (n = 301).
ASD severity n (row %)
Low High
Child Characteristics
Gender
         Male 140 (56.0%) 110 (44.0%)
         Female 29 (56.9%) 22 (43.1%)
Age **
         <5 years 10 (47.6%) 11 (52.4%)
         5 years – Less than 10 years 64 (47.8%) 70 (52.2%)
         10 years- Less than 15 years 78 (61.9%) 48 (38.1%)
         15-18 years 17 (85.0%) 3 (15.0%)
Diagnosis ***
         Classical Autism/AD 66 (41.5%) 93 (58.5%)
         PDD-NOS 40 (61.5%) 25 (38.5%)
         Asperger’s Syndrome 63 (81.8%) 14 (18.2%)
Caregiver Characteristics
Employment Status **
         Employed full time 75 (65.2%) 40 (34.8%)
         Employed part-time 25 (71.4%) 10 (28.6%)
         HM/Student/Other 69 (47.0%) 78 (53.0%)
Annual Income
         <$25,000 42 (46.1%) 49 (53.9%)
         $25,000- $49,000 13 (61.8%) 29 (38.2%)
         $50,000-$99,999 59 (57.3%) 44 (42.7%)
         $100,000 or more 21 (67.7%) 10 (32.3%)
Caregiver Burden ***
         Low 76 (76.0%) 24 (24.0%)
         Medium 56 (54.9%) 46 (45.1%)
         High 37 (37.4%) 62 (62.7%)

Note.

***

P < 0.001;

**

0.001 ≤ P < 0.01;

*

0.01 ≤ P < 0.05. PDD-NOS Pervasive Developmental Disorders-Not Otherwise Specified, AD Autistic Disorder, HM Home-maker.

Satisfaction with School Services

None of the child and caregiver characteristics were found to be significantly associated with satisfaction with school services, except for child’s ASD severity and caregiver burden (Table 4). Low caregiver burden was significantly associated with caregiver satisfaction with services. For example: lower proportion of caregivers in the high burden group who used behavioral interventions reported being satisfied (n = 7, 15.1%) as compared to 40.9% caregivers in the low burden group who reported satisfaction (n = 18, 40.9%).

Table 4. Distribution of responses across the 3-point satisfaction scale by child’s ASD severity and caregiver burden (n = 301).
Service Type Satisfied
n (row%)
Neutral
n (row%)
Dissatisfied
n (row%)
Speech/Language therapy
    ASD severity ***
      Low 44 (36.4%) 49 (40.5%) 28 (23.1%)
      High 78 (61.4%) 30 (23.6%) 19 (15.0%)
    Caregiver Burden ***
      Low 59 (68.6%) 18 (20.9%) 9 (10.5%)
      Medium 36 (44.4%) 29 (35.8%) 16 (19.8%)
      High 27 (33.3%) 32 (39.5%) 22 (27.2%)
Occupational Therapy
    ASD severity *
      Low 46 (47.9%) 29 (30.2%) 21 (21.9%)
      High 38 (34.9%) 34 (31.2%) 37 (33.9%)
    Caregiver Burden ***
      Low 38 (54.3%) 19 (27.1%) 13 (18.6%)
      Medium 26 (41.3%) 20 (31.7%) 17 (27.0%)
      High 20 (27.8%) 24 (33.3%) 28 (38.9%)
Social Skills Training
    ASD severity **
      Low 42 (47.7%) 25 (28.4%) 21 (23.9%)
      High 20 (27.8%) 20 (27.8%) 32 (44.4%)
    Caregiver Burden ***
      Low 32 (54.2%) 16 (27.1%) 11 (18.6%)
      Medium 20 (40.8%) 16 (32.7%) 13 (26.5%)
      High 10 (19.2%) 13 (25.0%) 29 (55.8%)
Physical therapy
    ASD severity
      Low 23 (41.8%) 17 (30.9%) 15 (27.3%)
      High 16 (27.6%) 19 (32.8%) 23 (39.7%)
    Caregiver Burden *
      Low 21 (48.8%) 11 (25.6%) 11 (25.6%)
      Medium 10 (30.3%) 14 (42.4%) 9 (27.3%)
      High 8 (21.6%) 11 (29.7%) 18 (48.6%)
Behavioral Interventions
    ASD severity *
      Low 24 (35.3%) 20 (29.4%) 24 (35.3%)
      High 13 (22.1%) 15 (25.4%) 31 (52.5%)
    Caregiver Burden *
      Low 18 (40.9%) 11 (25.0%) 15 (34.1%)
      Medium 12 (32.4%) 13 (35.2%) 12 (32.4%)
      High 7 (15.1%) 11 (23.9%) 28 (60.0%)

Note. The asterisks correspond to statistically significant differences in mean scores of categorical row variable across the 3-point ordinal satisfaction scale using the Cochran Mantel-Haenszel chi-square statistic.

***

P < 0.001;

**

0.001 ≤ P < 0.01;

*

0.01 ≤ P < 0.05.

Ordinal Logistic Regressions Analyses

Table 5 shows the odds ratios (OR’s), adjusted odds ratios (AOR’s), and 95% confidence intervals (CI) from logistic regressions on satisfation with five school services. Model 1 shows that the high ASD severity group was less likely to be satisfied with speech/language therapy (OR = 0.41, 95% CI = 0.25-0.66, P<0.001), occupational therapy (OR = 0.57, 95% CI = 0.34-0.95), social skills training (OR = 0.41, 95% CI = 0.23-0.73) and behavioral interventions (OR = 0.50, 95% CI = 0.26-0.97), as compared to low ASD severity group. Caregivers in the high ASD severity group were less likely to be satisfied with these services even after adjusting for child’s age, ASD diagnosis, caregiver income, and employment status (Model 2). Caregivers of children with high ASD severity were 55% less likely toe be satisfied with a speech/language therapy (AOR = 0.45, 95% CI = 0.27-0.76) and 60% less likely to be satisfied with behavioral interventions (AOR = 0.39, 95% CI = 0.19-0.83).

Table 5. Odds ratios and 95% confidence intervals from ordinal logistic regression on school services’ satisfaction reported by caregivers of children with ASD (n = 301).
Model 1§ Model 2§§ Model 3§§§
OR 95% CI AOR 95% CI AOR 95% CI
Service Type High vs. Low ASD severity
Speech/Language therapy 0.41 *** (0.25,0.66) 0.45 ** (0.27,0.76) 0.59 (0.34,1.03)
Occupational Therapy 0.57 * (0.34,0.95) 0.48 * (0.28,0.84) 0.58 (0.33,1.02)
Social Skills Training 0.41 ** (0.23,0.73) 0.34 ** (0.17,0.65) 0.50 (0.25,1.00)
Physical Therapy 0.55 (0.28,1.09) 0.54 (0.25,1.17) 0.69 (0.31,1.57)
Behavioral Interventions 0.50 * (0.26,0.97) 0.39 * (0.19,0.83) 0.55 (0.25,1.23)

Note. Asterisks represent statistically significant group differences compared to the reference group. “Dissatisfaction with School services” was the reference category for the dependent variable.

§

Basic Unadjusted Model;

§§

Model 1 adjusted for child age, ASD diagnosis, caregiver income, and employment status;

§§§

Model 2 adjusted for caregiver burden.

***

P < 0.001;

**

0.001 ≤ P < 0.01;

*

0.01 ≤ P < 0.05. OR Odds Ratios, AOR Adjusted Odds Ratios, CI Confidence Intervals.

One of the aims of the study was to examine the impact of caregiver burden on the association of child’s ASD severity with caregiver satisfaction with services. After addition of caregiver burden to the regression model, no significant association was observed between child’s ASD severity and caregiver satisfaction with any school service (Model 3).

Discussion

School services are critical for development of a child with ASD. Litigations involving parents of children with ASD and educational services have increased over time38,39 and many have been filed regarding the shorcomings of IEP’s to address their child’s individual needs.16,38 A review of 68 such cases (1997-2002) showed parents reporting lack of qualified IEP team members to evaluate and recommend placement for the child in the right program. Cases of low satisfaction or dissatisfaction with the school services have been reported in other studies as well.15,17,20,32 Such findings make it critical to recognize other unexplored factors contributing to parental/caregiver satisfaction with school services.

This study suggests that there is a significant association of child’s ASD severity with caregiver satisfaction with school services, where high ASD severity is associated with lower caregiver satisfaction (except for physical therapy). Even though participants in the study primarily reported either a satisfied or a neutral opinion about school services, some sub-groups of caregivers were less satisfied than the others. there are two plausible reasons as to why caregiver satisfaction may be associated with child’s ASD severity: 1) as observed in other studies,15,16 caregivers of children with more severe forms of ASD may feel that the number of hours of special education settings/ therapies/ other counseling sessions are inadequate for their child’s development and needs; and 2) caregivers of children with greater ASD severity are more likely to demand better qualified, trained, and skilled personnel as well as new treatment approaches, as compared to caregivers of children with lesser severity issues.

Second part of the study findings highlighted that no significant association existed between child’s ASD severity and caregiver satisfaction with services, after addition of caregiver burden to the model. Our study supports findings from other studies which have shown that families of children with disabilities cope in different ways.40 In short, our findings indicate that child’s greater ASD severity is associated with greater caregiver burden and lower caregiver satisfaction with school services. In addition, caregiver burden may possibly mediate the relationship between child’s ASD severity and caregiver satisfaction with school services.

Strengths

Contrary to studies15,17 which have focused on examining the inability of school services as causes of lower caregiver satisfaction, this study sheds light on a child characteristic, which may be a strong predictor of likelihood of level of caregiver satisfaction with school services. To the best of our knowledge, there are no reported studies that have evaluated the specific association of child’s ASD severity and caregiver satisfaction with school services.

Limitations

The study design did not permit for report of clinical diagnosis. The CARS-P cut-off scores were primarily categorized to form high and low groups, which may have an impact on the sensitivity of the results. No account of co-morbidities or other concurrent conditions was made. Caregiver burden scores were also categorized into tertiles which may not be uniform with the psychometric properties of the instrument. Due to low cell sizes, we collapsed the 5-point Likert satisfaction scale to a 3-point scale, which may have lead to a loss of sensitivity of responses. The study population was primarily restricted to West Virginia and may over represent White race, female caregivers, middle income group, and children diagnosed with Classical Autism/Autistic Disorder.

Implications

Low satisfaction with services among specific caregiver sub-groups should be taken into consideration by the school administrators, educators, and service coordinators while addressing caregiver issues with the child’s IEP. A possible area of improvement could be enhancing communication with parents and increasing their role in child’s IEP design, which has been reported to be one of the issues with school services.20 However, it should also be underlined that resource/personnel constraints may in any case limit the ability of the school to be fully responsive to the needs of the child. In addition, the extent of services’ provision beyond minimum requirements and other personnel resources vary from state to state school systems.

Conclusion

Child’s high ASD severity is associated with lower caregiver satisfaction with school services. Caregiver burden may partially explain such differences in report of satisfaction with school services across the low and high ASD severity sub-groups.

Acknowledgement

This research was funded by the West Virginia Collaborative Health Outcomes Research of Therapies and Services (WV CoHORTS) Center (AHRQ grant # R24HS018622-03).

The project described was partially supported by the IDeA-CTR award from the National Institute of General Medical Sciences, U54GM104942. The content is solely the responsibility of the authors and does not necessarily represent the official views of the NIH or policy or position of West Virginia University (WVU) or any other affiliated organizations.

Contributor Information

Rini Vohra, Department of Pharmaceutical Systems and Policy, School of Pharmacy, Robert C. Byrd Health Sciences Center (North), West Virginia University, Morgantown, WV.

Suresh Madhavan, Department of Pharmaceutical Systems and Policy, School of Pharmacy, Robert C. Byrd Health Sciences Center (North), West Virginia University, Morgantown, WV.

Rahul Khanna, Department of Pharmacy Administration, School of Pharmacy, The University of Mississippi, University, MS.

Barbara Becker-Cottrill, West Virginia Autism Training Center, Marshall University, Huntington, WV.

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