This report describes the post-high school educational and occupational activities for 66 young adults with autism spectrum disorders who had recently exited the secondary school system. Analyses indicated low rates of employment in the community, with the majority of young adults (56%) spending time in sheltered workshops or day activity centers. Young adults with ASD without an intellectual disability were three times more likely to have no daytime activities compared to adults with ASD who had an intellectual disability. Differences in behavioral functioning were observed by employment/day activity group. Our findings suggest that the current service system may be inadequate to accommodate the needs of youths with ASD who do not have intellectual disabilities during the transition to adulthood.

/pdf/employment-and-post-secondary-educational-activities-for-25yvx1u6ey.pdf

Employment and Post-Secondary Educational Activities for Young Adults with Autism Spectrum Disorders During the Transition to Adulthood

There is considerable and intense discussion in the field of intellectual disability/mental retardation about the construct of disability, how intellectual disability fits within the general construct of disability, and the use of the term intellectual disability (Glidden, 2006; Greenspan, 2006; MacMillan, Siperstein, & Leffert, 2006; Schalock & Luckasson, 2004; Switzky & Greenspan, 2006b). This discussion is occurring within the context of competing world views of the philosophical and epistemological underpinnings of the conceptions of intellectual disability/mental retardation (Switzky & Greenspan, 2006a). Increasingly, the term intellectual disability is being used instead of mental retardation. This transition in terminology is exemplified by organization names (e.g., the American Association on Intellectual and Developmental Disabilities—AAIDD, International Association for the Scientific Study of Intellectual Disabilities, President’s Committee for People With Intellectual Disabilities), journal titles, and published research (Parmenter, 2004; Schroeder, Gertz, & Velazquez, 2002). A number of questions have emerged with the increased use of the term intellectual disability:

The Renaming of Mental Retardation: Understanding the Change to the Term Intellectual Disability

This is the third in a series of perspective articles (Schalock et al., 2007; Wehmeyer et al., 2008) from the Terminology and Classification Committee of the American Association on Intellectual and Developmental Disabilities (AAIDD). The purpose of these articles is to share our thoughts on critical issues associated with terminology, definition, and classification in the field of intellectual disability and to seek input from the field as we prepare the 11th edition of AAIDD’s Diagnosis, Classification, and System of Supports Manual (the working title). In the first article (Schalock et al., 2007), we explained the reasons for shifting from the term mental retardation to intellectual disability. Although the two terms cover the same population of individuals, we concluded that intellectual disability was the better term because it

/pdf/conceptualizing-supports-and-the-support-needs-of-people-2q63208hya.pdf

Conceptualizing Supports and the Support Needs of People With Intellectual Disability

We examined whether exiting high school was associated with alterations in rates of change in autism symptoms and maladaptive behaviors. Participants were 242 youth with ASD who had recently exited the school system and were part of our larger longitudinal study; data were collected at five time points over nearly 10 years. Results indicated overall improvement of autism symptoms and internalized behaviors over the study period, but slowing rates of improvement after exit. Youth who did not have an intellectual disability evidenced the greatest slowing in improvement. Lower family income was associated with less improvement. Our findings suggest that adult day activities may not be as intellectually stimulating as educational activities in school, reflected by less phenotypic improvement after exit.

Changes in the Autism Behavioral Phenotype during the Transition to Adulthood.

This article updates the current conceptualization, measurement, and use of the adaptive behavior construct. Major sections of the article address an understanding of the construct, the current approaches to its measurement, four assessment issues and challenges related to the use of adaptive behavior information for the diagnosis of intellectual disability, and two future issues regarding the relations of adaptive behavior to multidimensional models of personal competence and the distribution of adaptive behavior scores. An understanding of the construct of adaptive behavior and its measurement is critical to clinicians and practitioners in the field because of its role in understanding the phenomenon of intellectual disability, diagnosing a person with intellectual disability, providing a framework for person-referenced education and habilitation goals, and focusing on an essential dimension of human functioning.

The Construct of Adaptive Behavior: Its Conceptualization, Measurement, and Use in the Field of Intellectual Disability

Mental retardation: Definition, classification, and systems of supports, 10th ed.

Mental Retardation: Definition, Classification, and Systems of Supports. 10th Edition.

ObjectivesTo understand the experience of the ASD diagnostic process and connecting to services, this qualitative study assessed the experiences of Latino families whose children were recently diagnosed with ASD.MethodsWe conducted a set of 2 semi-structured interviews with Latino parents of children aged 22 to 61 months who had been diagnosed with ASD within the past 3 to 6 months about their experience and emotions before, during, and after the ASD diagnosis process. The first interview took place 3 to 6 months after initial ASD diagnosis and the second was 6 months later. Participants were recruited from a multisite ambulatory developmental pediatrics program within a large statewide pediatric rehabilitation hospital. Interviews were recorded, transcribed verbatim, and then translated. An interdisciplinary team analyzed the data, allowing codes to emerge from the interviews. The constant comparative method was used to guide the process of finalizing themes.ResultsFrom 2016 to 2017, 20 families were interviewed representing a total of 21 children, including 1 set of twins. All respondents were female and 90% were Spanish speaking. We identified 3 major themes across 2 waves of interviews: 1) a family’s beliefs and understanding of ASD evolve from initial concerns through diagnosis and beyond; 2) parents view the child’s communication as central to daily family functioning, a marker of progress, and a concern for the future; and 3) families have concerns about their child being stigmatized as a result of an ASD diagnosis both now and in the future.ConclusionsMany parents’ understanding of ASD evolved as they educated themselves and navigated the complex system, soon becoming experts and advocates for their child. However, parents have significant concerns for their child that remain constant in the present and the future. This study emphasizes the need for culturally competent and responsive services to provide quality care and address concerns of Latino families.ASD, SII, ND ObjectivesTo understand the experience of the ASD diagnostic process and connecting to services, this qualitative study assessed the experiences of Latino families whose children were recently diagnosed with ASD. To understand the experience of the ASD diagnostic process and connecting to services, this qualitative study assessed the experiences of Latino families whose children were recently diagnosed with ASD. MethodsWe conducted a set of 2 semi-structured interviews with Latino parents of children aged 22 to 61 months who had been diagnosed with ASD within the past 3 to 6 months about their experience and emotions before, during, and after the ASD diagnosis process. The first interview took place 3 to 6 months after initial ASD diagnosis and the second was 6 months later. Participants were recruited from a multisite ambulatory developmental pediatrics program within a large statewide pediatric rehabilitation hospital. Interviews were recorded, transcribed verbatim, and then translated. An interdisciplinary team analyzed the data, allowing codes to emerge from the interviews. The constant comparative method was used to guide the process of finalizing themes. We conducted a set of 2 semi-structured interviews with Latino parents of children aged 22 to 61 months who had been diagnosed with ASD within the past 3 to 6 months about their experience and emotions before, during, and after the ASD diagnosis process. The first interview took place 3 to 6 months after initial ASD diagnosis and the second was 6 months later. Participants were recruited from a multisite ambulatory developmental pediatrics program within a large statewide pediatric rehabilitation hospital. Interviews were recorded, transcribed verbatim, and then translated. An interdisciplinary team analyzed the data, allowing codes to emerge from the interviews. The constant comparative method was used to guide the process of finalizing themes. ResultsFrom 2016 to 2017, 20 families were interviewed representing a total of 21 children, including 1 set of twins. All respondents were female and 90% were Spanish speaking. We identified 3 major themes across 2 waves of interviews: 1) a family’s beliefs and understanding of ASD evolve from initial concerns through diagnosis and beyond; 2) parents view the child’s communication as central to daily family functioning, a marker of progress, and a concern for the future; and 3) families have concerns about their child being stigmatized as a result of an ASD diagnosis both now and in the future. From 2016 to 2017, 20 families were interviewed representing a total of 21 children, including 1 set of twins. All respondents were female and 90% were Spanish speaking. We identified 3 major themes across 2 waves of interviews: 1) a family’s beliefs and understanding of ASD evolve from initial concerns through diagnosis and beyond; 2) parents view the child’s communication as central to daily family functioning, a marker of progress, and a concern for the future; and 3) families have concerns about their child being stigmatized as a result of an ASD diagnosis both now and in the future. ConclusionsMany parents’ understanding of ASD evolved as they educated themselves and navigated the complex system, soon becoming experts and advocates for their child. However, parents have significant concerns for their child that remain constant in the present and the future. This study emphasizes the need for culturally competent and responsive services to provide quality care and address concerns of Latino families.ASD, SII, ND Many parents’ understanding of ASD evolved as they educated themselves and navigated the complex system, soon becoming experts and advocates for their child. However, parents have significant concerns for their child that remain constant in the present and the future. This study emphasizes the need for culturally competent and responsive services to provide quality care and address concerns of Latino families. 

Deborah M. Spitalnik

Papers

Mental retardation: Definition, classification, and systems of supports, 10th ed.

Mental Retardation: Definition, Classification, and Systems of Supports. 10th Edition.

3.32 From Initial Concerns Through ASD Diagnosis and Beyond: Latino Families’ Perspectives and Experiences