Analyzing the inclusion of autism spectrum disorder in rehabilitation counseling journals 2000

Abstract

BACKGROUND: The Centers for Disease Control (2015) indicate that cases of autism spectrum disorder have risen over the past several years, and in the U.S. a new case of autism is identified almost every 20 minutes. As individuals get older and transition out of school, the question becomes, are they entering adult services and is the field of rehabilitation counseling addressing issues related to this population.

METHODS: A content analysis of six rehabilitation counseling journals from 2000 thru 2012 was conducted to determine the extent to which autism was addressed.

CONCLUSION: The analysis identified the prevalence of autism articles, theme content category, if the article was empirical or non-empirical, and deficits in the literature. Of the 1,769 articles, 22 addressed autism, with the greatest number being published in the Journal of Vocational Rehabilitation, and the most frequently occurring theme being employment.

Keywords

Autism ASD spectrum Asperger’s developmental disability

1 Introduction

Autism spectrum disorder (ASD) is “a range of complex neurodevelopment disorders, characterized by social impairments, communication difficulties, and restricted, repetitive, and stereotyped patterns of behavior” (National Institute of Neurological Disorders and Stroke, 2013, para 1). Other characteristics of autism may include sensory difficulties, a love of routines and special interests, mental health difficulties (e.g., severe anxiety, depression), and learning disabilities (e.g., dyspraxia). Severity is based on social communication impairment and restricted, repetitive patterns of behavior (Diagnostic and Statistical Manual of Mental Disorders [DSM-5], 2013). It is estimated that 1 out of 88 children age eight will elicit behavior criteria consistent with ASD. Males are four times more likely to have ASD than females (Centers for Disease Control and Prevention [CDC], 2015).

The causes of ASD are not certain, but it is likely that both genetics and environment play a role. There is no known cure for ASD; however, therapies and behavioral interventions are designed to address specific symptoms. The symptoms of ASD may change over time, ranging from development of epilepsy or seizure-like brain activity in childhood, to depression or behavioral problems in adolescence to obsessive-compulsive disorder, schizoid personality, or affective disorder in adulthood (Levy & Perry, 2011). By adulthood, symptoms of ASD may be masked by the person’s life and treatment experiences, the effects of drugs, and his or her own efforts to cope with the disorder (Levy & Perry). In addition, the critical symptoms of some higher functioning forms of ASD (e.g., formerly referred to as Asperger’s) may not become evident until adolescence or adulthood when the individual is required to interact in specifically prescribed social situations.

There are an estimated 1.5 million adults on the autism spectrum in the United States (U.S. Census Bureau, 2011). Tracking autism is relatively recent; thus, there is a lack of research on how the employment and living situations of adults on the spectrum have changed over the years. Individual abilities vary among adults with ASD. For example, some adults learn to function well in society, earn a college degree, and work in high-paying competitive jobs, while others never develop the communication and self-help skills necessary to function independently. Shattuck et al. (2012) report that youth with ASD have poor postsecondary employment and education outcomes, especially in the first two years after high school. Their findings suggest that lower-income families and those with greater functional impairments are at increased risk for poor outcomes. Research indicates that adults on the autism spectrum (a) have lower rates of employment, with 25% to 50% participating in any type of paid employment (Hendricks, 2010); (b) those employed often are employed below their level of education and have difficulty maintaining stable employment (Hendricks; Hurlbutt, 2004; Levy & Perry, 2011; Taylor & Seltzer, 2011); (c) lower cognitive and language functioning have been associated with low rates of employment (Cederlund et al., 2008; Graetz, 2010), and (d) rates of postsecondary educational participation are substantially lower than the general population (Cederlund et al., 2008; Eaves & Ho, 2008; Wagner et al., 2005).

What is known about ASD is that it is a life-long and chronic disorder, which can significantly and adversely affect an individual’s cognitive, social, and vocational functioning, and may contribute to many individuals experiencing substantial difficulties. Correspondingly, autism in adulthood is an issue of increasing concern for vocational rehabilitation counseling especially considering the increase in the number of youth served by vocational rehabilitation (VR) programs, which has more than doubled between 2006 and 2010 (Migliore, Butterworth, & Zalewska, 2014). Additionally, the implementation of the recently enacted Workforce Innovation and Opportunity Act (WIOA) whose focus includes pre-employment transition services for students with disabilities will potentially further increase the number of youths being served by VR programs. The significant increase in the number alone of youth served by VR programs makes ASD a subject of significant interest among all types of disabilities. With the recent increase in the diagnosis of autism in children and the presumed consequent rise in the number of adults on the autism spectrum, it is important to determine the extent to which rehabilitation research is keeping pace with the growing population. The purpose of this analysis was to conduct a content analysis of the rehabilitation counseling literature to identify articles published on autism, identify gaps in the literature, and speculate about next directions for research and service delivery. The following research questions were answered:

What is the prevalence of articles addressing ASD in the mainstream rehabilitation counseling literature?

What themes of ASD are addressed in rehabilitation counseling articles?

What percent of articles were empirical and non-empirical?

What are the deficits in the rehabilitation counseling literature as it pertains to ASD issues and how to address them in future research?

2 Method

To determine the number of articles that were published on ASD in rehabilitation counseling journals, a content analysis of articles from 2000 through 2012 was performed. For purposes of this review, only full-length, peer reviewed articles (i.e., research studies, literature reviews, and program descriptions) with abstracts were included for analysis. The procedure for selection of journals and identifying and categorizing articles is presented below.

2.1 Procedure

A five-step process was used for the content analysis. First, journals considered as the most relevant in the discipline were identified. These journals primarily focus on issues pertaining to rehabilitation of people with disabilities including vocational rehabilitation and rehabilitation counseling. The aim and scope of the journals are highlighted in Table 1. They are also the most frequently read in the field of rehabilitation counseling. The six journals selected for inclusion were determined from a review of the extant rehabilitation literature. Previous content analyses of rehabilitation journals (Benshoff, Janikowski, Taricone, & Brenner, 1990; Harley, Feist-Price, & Alston, 1996; Plotner et al., 2011) identified the most read journals. The journals selected were: Journal of Applied Rehabilitation Counseling (JARC), Journal of Rehabilitation (JR), Journal of Rehabilitation Administration (JRA), Journal of Vocational Rehabilitation (JVR), Rehabilitation Counseling Bulletin (RCB), and Rehabilitation Research, Policy, and Education (RRPE) (formerly Rehabilitation Education). While acknowledging that these six are not the only journals in which ASD may be included as a topic, they do however represent a cross section in which articles pertaining to ASD across topics of vocational rehabilitation, employment and transition of people with ASD are likely to be published.

The second step involved identifying relevant articles by electronically searching social sciences databases including CINAHL, ERIC, MEDLINE, and psycINFO. Key words and phrases pertaining to ASD and words that operationally defined ASD including autism, autistic, ASD Spectrum, Asperger’s, and developmental disability, were used to identify articles. In addition, to further increase the likelihood of finding articles that did not match the electronic word search, the table of contents of each issue of the selected journals was manually reviewed to identify relevant articles in which the title contained any of the key words or variations thereof, including any other ASD related words or phrases not included in our original key words. Three additional articles were identified through this method and those were included in their respective journals with the 19 others that had been identified electronically. If the title contained one or more of the key words, it was selected for review and the name of the article, journal name, year and issue, volume number, and page number were recorded. This systematic counting method establishes procedural validity (Heesacker, Hepper, & Rogers, 1982) allowing researchers to trace any article back to its original source for a reliability check

As a third step, when titles were identified that contained a key word, the abstract was read to determine the content of the article. In cases where it could not be determined from the abstract if the content of the article addressed ASD, the entire article was reviewed. A coding sheet was used to record the main theme on ASD. In the fourth step, articles were sorted and classified according to content theme. Themes were determined by the article content and were not predetermined. If the title or abstract would allow the article to be classified under multiple themes, the researchers read the article and based on content, the article was coded into only one category. Finally, the articles were further coded as empirical or non-empirical. Two of the researchers were reviewers for these procedural steps.

2.2 Inter-rater reliability

To ensure consistency of article inclusion and theme classification, reliability checks were conducted by another of the researchers for steps two through five by selecting randomly three years of each journal for which the two researchers coded the articles based on the theme of ASD. As a final step, a third researcher coded 30% (Plotner et al., 2011) of the articles to evaluate inter-rater agreement on theme classification. Inter-rater reliability was calculated by the following formula: $\frac{Number of agreements}{Number of agreements + disagreements} \times 100$

(Gall, Gall, & Borg, 2007). A reliability of 70% (Gall, Gall, & Borg) is considered as acceptable. If there were discrepancies on articles included or theme classifications, a two-step process was employed. First, inaccuracies and classification errors were checked by a review of the categories and key words for clarity and by referring back to the original source (Harley et al., 1996). Second, two of the researchers met while the coding was being done to discuss the discrepancy and come to an agreement on coding (Plotner et al.).

3 Results

The purposes of this content analysis of the rehabilitation counseling literature were to: (1) determine the extent to which articles on autism were published, (2) identity the themes that were investigated as related to autism, (3) determine the frequency of empirical and non-empirical articles, and (4) examine the deficits in the literature on the topic of autism and how to address them in future research. Most of the journals reviewed for this study were published quarterly. The prevalence of articles addressing autism in the mainstream rehabilitation counseling literature focused on a thirteen – year period. A total of 1,769 articles published in six rehabilitation counseling journals were reviewed: JARC (n = 282, 16%); JR; (n = 322, 18%); JRA (n = 175, 10%); JVR (n = 477, 27%); RCB (n = 291, 16%); and RRPE (n = 222, 13%). Since 2000, only 22 articles in rehabilitation journals account for content on autism spectrum disorder. This number represents only 1.24% of all articles published, a number that is significantly small especially considering that seven of these articles appeared in a special issue of JVR in 2010. No articles on ASD were published in 2001, 2006, 2007, 2008, and 2009. Table 2 provides a summary of the total number of articles included in rehabilitation counseling journals, which were classified as having content on autism between 2000 and 2012. The Journal of Vocational Rehabilitation had the largest number of articles (n = 15), followed by the RCB (n = 3), JARC (n = 2), JRA (n = 1), and JR (n = 1). Rehabilitation Research, Policy, and Education had no articles.

Of the 22 articles, 12 pertained to adults, six to youth/children, three to parents of children with ASD, and one was generic. Eleven of the articles were empirical or data based. Of the 11 empirical articles, seven were on adults, three on youth, and one on parents. The articles on adults were twice that on youth, suggesting that the dearth of information regarding adults with ASD, while substantial, is not as great as that for youth.

Inter-rater agreement was 86%. A review of the abstract of each article resulted in the following themes: “Employment” (n = 13, 59%), “Characteristics” (n = 3, 14%), “Parenting” (n = 3, 14%), “Technology” (n = 2, 9%), and “Quality of Life” (n = 1, 4%). The number of empirical and non-empirical articles was evenly distributed at 11 (50%) each. Of the empirical articles, eight (37%) were published in JVR, two (9%) in RCB, and one (4%) in JRA. Table 3 shows the number of articles classified by themes and their classification as empirical vs. non-empirical.

4 Discussion

The results of the current study quantify the amount of attention given to ASD in select rehabilitation counseling journals. It should be noted, however, that results did not show whether there is a correlation between the number of articles published on ASD and the aim and scope of the selected rehabilitation counseling journals. There are only 22 articles over a thirteen–year time period. The pattern of articles reveals that no articles were published in 2001, 2006, 2007, 2008 and 2009. In addition, the themes that were identified included only five categories, with the greatest number being on employment. One can argue that the overwhelming focus on employment is understandable because the primary focus of rehabilitation counseling services is to assist persons with disabilities to obtain employment. Similarly, because of its aim and scope on “vocational” rehabilitation, one can surmise that JVR would have published more articles on employment. However, without the special issue in JVR, the percentage of article published on ASD would be 0.847%.

The degree of variability in the percentage of articles across journals is a reflection of the small number of articles in some journals, with a range of 0–15. Otherwise, this content analysis illustrates a low frequency (22 out of 1769) of articles and an infrequent trend (five years with no publications, which includes a four-year trend) in the publication of articles on autism. The remainder of the discussion section will present implications of the results of this study. In addition limitations of the study are discussed.

Work is generally recognized as important to people and as a desirable social achievement, a means to increased financial independence, and a contributing factor to quality of life (Gerhardt & Lainer, 2011; Hendricks, 2010). Of the themes in this study, only one (4%) article was identified related to quality of life, rather disproportionate to the theme of employment (n = 13, 59%). Thus, one can infer that work is important to individuals with autism and that they equally need to be supported in employment (Migliore et al., 2014; Taylor & Seltzer, 2011). Among the twenty-two articles in this analysis, thirteen were categorized as focusing on employment or having employment as the primary theme. Yet, people with disabilities are disproportionately represented among those who are unemployed and underemployed (US Department of Labor, Office of Disability Employment Policy, 2015). However, those along the autism spectrum who are high functioning may not be included in the statistics and predictions on employment outcomes for this population because as they transition into the world-of-work they lose the external structure associated with individual supervision and direction on which they depended in school (Friedman et al., 2013).

With the increasing number of persons with ASD who transition into vocational rehabilitation services (Chen, Sung, & Sukyeong, 2015; Dew & Alan, 2007; Lugas, Timmons, & Smith, 2010; Migliore et al., 2013) it is reasonable to expect: (a) rehabilitation counselors should have knowledge of practices of helping individuals with autism obtain their full potential - whether living independently, interacting with family and environment appropriately, and obtaining and maintaining employment, (b) the rehabilitation counseling literature to be responsive to providing evidence-based practices and information and resources, and (c) the rehabilitation literature should disseminate research on VR services that are related to successful employment outcomes of persons with ASD.

Although the number of articles on adults with ASD (n = 12) was twice that of youth (n = 6), the lesser focus on youth suggests that rehabilitation researchers may place less emphasis on the youth population. It is noteworthy to mention that both youth and adults with ASD have the lowest outcomes across disability groups (Hendricks, 2010; Shattuck et al., 2012). According to Chen et al. (2015), youth make up the largest portion of VR service users among the ASD population, yet have the worst employment outcomes across all age groups. Because young adults with ASD continue to demonstrate significantly worse employment outcomes in comparison with other youths with disabilities (Roux et al. 2013), may be an indication of their difficulties with transitioning into the world of work (Cimera, Burgess, & Wiley, 2013). Given these results, one can speculate that rehabilitation researchers may be missing an opportunity to provide evidence-based research on youth with ASD that may assist VR counselors in service delivery.

Two themes, characteristics and parenting, had the second highest number of articles (n = 3, 14% each), suggesting the need to educate rehabilitation professionals about ASD and that ongoing parental involvement in their adult children’s lives is to act as advocates on their behalf. Research suggests that parental involvement across the lifespan of individuals with autism is key to their success in life (Benson, Karloff, & Sipperstein, 2008; Schall, Wehman, & McDonough, 2012; Burrell & Borrego, 2012) and is especially important in their transition into adulthood, as it helps them transverse this new experience.

The results of this study identified only five themes: employment, characteristics, parenting, technology, and quality of life, for the 22 articles. These themes are varied and imply that a multidisciplinary approach is required to address the needs of persons with ASD. The audiences and foci of the select journals in this study are rehabilitation counseling and other professionals providing direct services to persons with disabilities and rehabilitation education and administration. To best meet the diverse service needs of persons with ASD, the select journals should solicit research contributions from other disciplines, including but not limited to psychology, special education, school psychology, social work, and neuropsychology. This is, however, not to suggest that other rehabilitation journals that are not included in this study do not publish articles from researchers in other disciplines.

4.1 Implications

The findings of this content analysis have certain implications for service delivery, research and training, and policy in rehabilitation counseling. First, research suggests that interagency collaboration between rehabilitation professionals and special educators results in successful student outcomes (Albright et al., 1981; Malloy, Cheney, & Cormier, 1998; Morgan, Schultz, & Woolstenhulme, 2011; Oertle & Trach, 2007). However, studies indicate that current and potential support systems for youth with ASD in the areas of education, vocational preparation, employment, and community residential services are fragmented, at best (Friedman, Warfield, & Parish, 2013; Shelton & Golden, 2005) with different agencies either duplicating services, not knowing what the other agencies are doing for the individual, or having no proper mechanism for passing the individual from one agency to another. In many cases, the youth with ASD has to be discharged from one agency before being served by another. Conversely, the overlapping of services for a short period (Hendricks & Wehman, 2009) would be more beneficial to the client as he or she receives seamless services and, for the agencies involved there would be no unnecessary repetition of services or gaps in the services. The limited number of articles in this study identified no theme on interagency collaboration.

Second, studies done on the involvement of rehabilitation counselors in the transition of youth with ASD indicate that their participation is limited. For example, Oertle (2009) found that up to 33% of rehabilitation counselors who participated in the study indicated that they did not know the expectations of them by educators, parents, and the youth with ASD regarding their transition. In another study, rehabilitation counselors participated in 49% of transition planning meetings for youth with ASD (Cameto, Levine, & Wagner, 2004). The rate of less than half of the amount of participation may negatively affect the transition process, especially because of the rehabilitation counselor’s role as a vital connective entity between youth with ASD, their families, the school system, and the residential and employment community. According to Milgiore et al. (2014), the combination of more children who are diagnosed with autism and the expansion of employment first policies are “likely to generate a substantial increase in the number of transition-age youth with autism who will seek employment services in the coming years” (p. 80). Therefore, a need exists for greater rehabilitation counselor participation in transition activities and for more education and training in this area to enable counselors to adequately serve persons with ASD.

Finally, rehabilitation counselors and job placement specialists need to know and implement those general “promising practices” (e.g., individual preferences, real life situations, networking, natural supports) recommended for supporting job seekers with ASD and any types of disabilities (Migliore et al., 2014). For youth in general and especially those with ASD, the VR system is only one of a few systems that provides employment support to persons with disabilities starting at transition age (Lawer et al., 2009).

4.2 Limitations

Limitations of this study should be considered in evaluating its implications. One possible limitation of this study is that only six rehabilitation counseling journals were selected for inclusion. The selection of these six journals may have an inherent bias because they were selected based on a review of the extant literature that identified these journals as frequently read journals in the field. In addition, arguments can be made for the inclusion of a wider selection of rehabilitation counseling journals as well as interdisciplinary and related journals that publish research on disability. Given the interdisciplinary nature of rehabilitation counseling, it is reasonable to expect that rehabilitation practitioners, students, and educators read journals outside of their discipline.

Second, the words used to search for articles could have been limiting and did not cast a broad enough scope to capture all articles that addressed ASD. Also, all potential words may not have been identified to allow for the inclusion of more articles. It is probable that some articles in this subject may have been published under headings such as developmental or neurodevelopmental disorders, which do not include any of the keywords used in our literature search. Similarly, the researchers may have deemed certain words as inappropriate and not meeting the word search criteria. Third, some articles could have been misclassified, resulting in misreporting of frequency of themes or themes not being identified. Those articles that may have fit into multiple categories and were forced choice into one, may misrepresent the number of articles that addressed certain themes on ASD.

Fourth, the inclusion of full-length articles only (to the exclusion of brief reports, forums) could result in minimizing the scope of attention given to the topic of ASD in rehabilitation counseling journals. Fifth, the identification of articles as either empirical or not without reporting the research design used in the empirical articles missed an opportunity to address the quality of the empirical evidence. With the emphasis on evidence-based practices, the quality of the research is just as important as the theme and there was no attempt to evaluate the importance of the contributions examined.

Each of the journals selected has a different mission (see Table 1); focuses on different sectors of the rehabilitation profession such as education and training, research and development, administration and supervision, practice and service delivery, or policy; and targets different primary audiences (e.g., rehabilitation counselors, educators, researchers, or policy makers). The researchers were unable to make any inferences about the inclusion or exclusion of articles on ASD in relation to the mission and target audience of the select journals.

As in the study by Plotner et al. (2011), this study had no comparative data on the percentage of articles that focused on other areas of practice for vocational rehabilitation counselors. In the current study the focus was on articles that primarily address autism. Without comparative data, it cannot be said with certainty whether other types of disabilities have received greater attention or coverage than ASD in the selected publications. It is also possible that some articles on transition may well have addressed ASD.

5 Future research

Clearly, the low number of published research on ASD in rehabilitation counseling journals warrants the argument that more research needs to be done and published regarding the needs of individuals with autism spectrum disorder in rehabilitation settings. These needs involve the multiple dimensions of the whole person, all aspects of interaction with the environment (social, economic, well-being), and specific needs based on functioning level along the spectrum. Thus, research on ASD should include a multidisciplinary approach, involving other disciplines such as special education, psychology, and school psychology. By doing so, potentially more evidence-based strategies can be identified and used by rehabilitation counselors to more effectively help individuals with autism obtain their full potential, as well as inform policy. In addition, because of the limited number of articles published in rehabilitation counseling journals and, given the missions and target audiences of the select journals in this study, surveys should be conducted on rehabilitation counselors to understand their training needs, knowledge and perceptions of ASD, as well as their knowledge of job placement and employment strategies for individuals with ASD. Other studies need to be conducted to establish best practices in rehabilitation counselors’ service provision and participation in transitional activities for youth with ASD based on empirical evidence.

In a discussion of future research recommendations, the researchers would be remiss not to suggest a need for further research to explore the application of the International Classification of Functioning, Disability and Health (ICF; WHO, 2001) framework in rehabilitation counseling in determining the disabling impact of ASD and the specific levels and types of limitations based on actual participation. The ICF offers the utility of accurately measuring the potential of people with ASD in terms of activity participation as well as identify environmental barriers rather than relying on general assumptions about ASD, which could be inaccurate. In light of globalization and the desire to be more inclusive, research on the use of the ICF for persons with ASD may prove illuminating.

6 Conclusion

The prevalence of ASD has steadily increased in the past 15 years, notably from 1 in 150 children in 2000, to 1 in 68 children in 2010 (CDC, 2015). Also, the number of young adults receiving services from state vocational rehabilitation programs increased from approximately 3,000 to just about 7,000 between 2006 and 2010 (Magliore et al. 2013). This significant increase in prevalence makes ASD more common among other disabilities. Unfortunately, as established by this content analysis, there has been a disconcerting dearth of literature on ASD during that 13-year period in rehabilitation counseling journals. Given the anticipated trajectory of the rate of ASD, the researchers of this study suggest that the rehabilitation counseling profession examine which counselor training programs are infusing ASD-specific content into their curricula. As the population of those diagnosed with ASD continues to grow and receive rehabilitation services, it is important that research, education, and policy on ASD grow with it in order to promote successful outcomes for people with ASD. Thus, periodic review of the rehabilitation counseling literature is warranted to gauge the extent to which the discipline is responsive to the consumer trends.

Conflict of interest

The authors have no conflict of interest to report.

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Analyzing the inclusion of autism spectrum disorder in rehabilitation counseling journals 2000–2012: Implications for service delivery

Abstract

Keywords

1 Introduction

2 Method

2.1 Procedure

2.2 Inter-rater reliability

3 Results

4 Discussion

4.1 Implications

4.2 Limitations

5 Future research

6 Conclusion

Conflict of interest

References