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The number of youth on the autism spectrum approaching young adulthood and attending college is growing. Very little is known about the subjective experience of these college students. Disability identification and self-efficacy are two subjective factors that are critical for the developmental and logistical tasks associated with emerging adulthood. This study uses data from the National Longitudinal Transition Study 2 to examine the prevalence and correlates of disability identification and self-efficacy among college students on the autism spectrum. Results indicate nearly one-third of these students do not report seeing themselves as disabled or having a special need. Black race was associated with lower likelihood of both disability identification and self-efficacy.

1. Introduction

Approximately 50,000 youth on the autism spectrum turn 18 years old each year, a proxy indicator for the number entering adulthood. About 35%, or 17,500 youth on the autism spectrum per year, go on to attend college within the first six years after high school [ 1]. Of the youth on the autism spectrum who attend college, about 34% choose a major in science, technology, engineering, or math (STEM). This rate of STEM majoring is significantly higher than that seen in any other disability category and also higher than the 23% rate seen in the general population [ 2, 3]. In the broader context of a competitive global economy, the subset of students who pursue STEM majors are especially important to consider.

Some research has documented how the core challenges of autism spectrum disorder (ASD)-difficulty maintaining the reciprocal interaction essential to learning, poor nonverbal communication, and a limited ability to understand and use the rules of social behavior-may limit success in college [ 4- 6]. However, very few studies have examined subjective perceptions of self among postsecondary college students on the autism spectrum. This fact is at odds with the current federal priority to promote ASD research that emphasizes understanding the insights, personal experiences, and perspectives of people on the autism spectrum [ 7].

Two important components of self-perception that are central to the developmental challenges of transitioning from adolescence to emerging adulthood are identity formation and self-efficacy [ 8- 10]. Identity refers to one's self-image and has multiple facets including racial and ethnic identity, gender identity, and disability identity. Identity formation is a dynamic, nuanced, multidimensional, and lifelong process that takes on particular importance during emerging adulthood when questions about life purpose and direction move to the foreground [ 11, 12]. The emergent sense of identity during this period has ramifications for decision making related to college majors, persistence to degree completion, career choices, and relationship formation.

Particularly salient for emerging adults on the autism spectrum is disability identity. The literature regarding disability and identity includes complex definitions and debates about the social versus medical model of disability and what it truly means to be "disabled" [ 13- 15]. Clearly, identity formation is a highly nuanced topic. For the purposes of this exploratory paper, we rely on a self-report measure of seeing oneself as having a disability or special need. We argue that this singular dimension of disability identity is more appropriately referred to as "disability identification." We were not able to find studies focusing on disability identity or identification exclusively among college students on the autism spectrum. We did find one report that described rates of disability identification among a sample of postsecondary youth (a mix of college students and nonstudents) with a variety of disability types [ 16]. Approximately three-quarters (76.1%) of youth on the autism spectrum in that study considered themselves individuals with a disability, but this rate was not broken out for college students.

Self-efficacy refers to one's perceived ability to do things for one's self and be successful [ 8]. A strong sense of self-efficacy has been recognized in developmental research as a component of resilience and an asset that helps foster healthy development [ 10]. Studies have shown a connection between a student's sense of self-efficacy and positive postsecondary education outcomes, such as higher grade-point averages and persistence [ 17- 20], and specifically for completion rates and grades in STEM fields [ 21- 23]. Although these studies draw a clear connection between self-efficacy and postsecondary success, there are very few studies that look at the issue for students on the autism spectrum.

Prior research has found that self-efficacy beliefs among STEM students with disabilities are malleable and have a reciprocally influential relationship with academic success and persistence [ 24]. Exploring the association between STEM majoring and self-efficacy is an important step toward a better understanding of which factors might promote success in a segment of the ASD population who could be especially valuable contributors to the national economy.

Study Aims. This exploratory study is one of the first of its kind to consider the subjective experiences of college students on the autism spectrum by examining disability identification and self-efficacy. In this study we use data from a large national survey to examine two questions. First, what are the distributions of disability identification and self-efficacy in college students on the autism spectrum? Second, what are the correlates of disability identification and self-efficacy in this group?

Given the lack of prior research on these topics among college students on the autism spectrum, we opted to examine a small set of correlates that were available in this secondary data set and are known to be significantly associated with a range of postsecondary outcomes for young adults on the autism spectrum: sex, race, household income, functional skills, and STEM major [ 1, 25- 28]. Difficulty with social communication, another covariate in this study, is a defining feature of ASDs and is a consistently strong predictor of variability in adult outcomes [ 29].

2. Methods

2.1. Ethics Statement

Use of these data is governed by a data use agreement with the US Department of Education and was deemed exempt by the Drexel University Institutional Review Board.

2.2. Study Sample

Data for this study came from the National Longitudinal Transition Study 2 (NLTS2) conducted by SRI International under contract with the US Department of Education. The NLTS2 was conducted over 5 waves, each 2 years apart, from 2001 to 2009. At baseline, all youth were ages 13-16 years old and receiving special education services. The NLTS2 began with over 11,000 students, including 920 in the autism special education category.

The NLTS2 used a nationally representative two-stage sampling design. Local education agencies (LEAs) were sampled first followed by selection of students from special education enrollment rosters. Weighted estimates generalize to the national population of youth who had been receiving special education services at baseline [ 30]. Full details of the sampling strategy for NLTS2 were previously published [ 31]. The dependent variables for the current study are from the youth survey at wave 5, collected in 2009. This wave of NLTS2 had the largest number of postsecondary youth available for analysis. Unweighted sample numbers in this report were rounded to the nearest ten, as required by the US Department of Education.

For the sake of official special education enrollment reports, each student is counted only once in a primary disability category. Autism is one of twelve primary disabilities reporting categories mandated by the Individuals with Disabilities Education Act (IDEA) and included in the NLTS2. Each student's eligibility for special education services was determined by the school district from whose roster the student was sampled. Population-based research in the US has consistently found that the vast majority (>95%) of children receiving special education services in the autism category also meet DSM-IV-based case criteria for an ASD [ 32, 33].

There were approximately 660 participants identified in the autism category at the beginning of the NLTS2 who remained as participants at wave 5. Approximately 190 of these 660 youth had attended either a 2-year or 4-year college at some point since exiting high school. The total number of college attendees with valid values on all dependent measures was approximately 120-the total for this study. Some only attended a 4-year college (13.9%). The rest either only attended a 2-year college (42.0%) or attended both 2- and 4-year colleges (44.1%) during the first eight years after high school. They ranged in age from 21 to 25 years old.

2.3. Dependent Measures

Disability Identification. The NLTS2 Youth Survey included a yes/no question about disability identification-"Some people have a disability or special need that makes it hard for them to do some things. Do you consider yourself to have any kind of disability or special need?"

Self-Efficacy. Valid self-efficacy questions should be phrased in ways that ask about a person's perceived capability-what they believe they can do or know how to do [ 34]. We carefully reviewed all NLTS2 Youth Survey questions to find items that were either worded very similarly to items from validated self-efficacy scales or had high face validity based on Bandura's guidelines for the construction of self-efficacy measures [ 34]. We found three questions asking youth how well each statement described him/herself: (1) "You can handle most things that come your way," (2) "You know how to get information you need," and (3) "You can get school staff and other adults to listen to you." For each statement, the ordinal responses were (1) not at all like me, (2) a little like me, and (3) very much like me. Question 1 is nearly identical to an item from Schwarzer's widely used Generalized Self-Efficacy scale: "I can usually handle whatever comes my way" [ 35]. Asking about perceived ability to obtain needed information is commonly used in measures of self-efficacy among patients and students [ 34, 36]. Asking about perceived ability to be assertive and communicate effectively with teachers and adults is also common in measures of student self-efficacy [ 34].

2.4. Covariates

College major was split into STEM and not-STEM. STEM majors included computer science/information technology, engineering, mathematics, and other hard sciences such as biology, physics, and chemistry. Demographic covariates included sex, race, and household income. The income variable was collapsed into 4 ordinal categories for stratifying the descriptive point estimates and then rescaled to increments of $10,000 for the regression models to make odds ratios and coefficients interpretable as the estimated unit change in each dependent variable per $10,000 change in income. A 3-category, parent-report ordinal variable measured how well each youth can carry on a conversation: (1) "Does not carry on a conversation at all" or "Has a lot of trouble carrying conversation," (2) "Has a little trouble carrying conversation," and (3) "Has no trouble carrying conversation." A functional skills scale was constructed by summing eight 4-category (not at all well, not very well, pretty well, and very well) parent-report questions about how well a youth could do the following tasks without help: tell time on an analog clock, read and understand common signs, count change, look up telephone numbers and use a telephone, get to places outside the home, use public transportation, buy own clothes at a store, and arrange a plane or train trip (Cronbach's alpha = 0.85 in the ASD group).

2.5. Data Analysis

Rates of missing data per covariate ranged from 0% to 15%, with two variables missing more than 10% (functional skills scale 11%; income 15%). Missing covariates were imputed using sequential regression in IVEware (version 0.1) to create 50 sets of data with no missing values [ 37, 38].

All reported estimates were weighted and variances adjusted to account for the complex sampling and the multiple imputations using the "mi svy" procedures available in Stata v12 which uses standard methods for combining estimates in the analysis of multiply imputed data [ 39]. Univariate point estimates and 95% confidence intervals were computed for describing the independent and dependent variables (Table 1). A logistic regression model estimated the adjusted association between correlates and the disability identification indicator (Table 2). Linear regression models estimated the adjusted associations with each ordinal self-efficacy item. We also estimated these models using an ordinal logistic method and found no differences in which covariates were found to be significantly associated with outcomes. We chose to report the linear regression findings for ease of interpretation.

Given the small sample size and the exploratory nature of our research aims we chose an alpha level of 0.10 for indicating statistical significance in tables. This choice decreases the likelihood of making a Type II Error (i.e., determining there is no effect in the population when there really is) while increasing the likelihood of making a Type I Error (i.e., determining there is an effect in the population when there really is not). Readers should interpret findings of statistical significance with caution.

3. Results

Reviewing the characteristics of the population of youth on the autism spectrum who attended either a 2-year or 4-year college or university since leaving high school (Table 1), these youth were more likely to be male (85.2%) and were concentrated in the higher income categories (38.7% with income $50,001-$75,000 and 37.3% with family income >$75,000).

Approximately two-thirds (69.4%) of youth on the autism spectrum considered themselves to have a disability or special need. Overall, college students on the autism spectrum reported a high level of confidence in their ability to "get information they needed" and "getting school staff and other adults to listen to them" (approximately 72% reported these statements described them "very much"), but lower confidence for "can handle most things that come their way" with only 40.9% reporting "very much."

Regression model results (Table 2) revealed that the odds of disability identification were significantly lower among blacks and those with higher functional skills. Believing "one can handle most things that come their way" was significantly lower among STEM majors but higher among males and those with better conversation ability. Belief in being able to get needed information was lower in males but higher among those with better conversation ability. Belief in being able to get people to listen was lower among blacks (versus whites). Identity and self-efficacy measures were not significantly associated with each other in these models.

4. Discussion

Several important findings emerged from this study. Approximately one-third of college students on the autism spectrum do not consider themselves to have a disability or special need. Some colleges are now offering support programs targeted at students on the autism spectrum [ 40, 41]. If students are required to self-identify as being on the autism spectrum before qualifying for services then this may unintentionally exclude a large proportion of those in need. Colleges might consider options for reducing stigma by creating services to support social and academic success that are marketed to all students without requiring students to "out" themselves with respect to disability status. This is already done at many colleges for general academic tutoring and help with writing.

There can be both costs and benefits to accepting or rejecting disability identity. Lower rates of mental health problems have been associated with rejecting disability identity [ 42]. However, to succeed in college, many students on the autism spectrum will need supportive services and accommodations [ 43], and college students generally need to disclose and document their disability in order to receive accommodations and services through a college's disability services program. Strategically presenting one's disability is a key factor in obtaining disability services at postsecondary institutions [ 44, 45]. The transition planning process during high school needs to include a clear exploration of the potential pros and cons of disability disclosure on an individualized basis.

Less than half of college students on the autism spectrum expressed a high degree of global expectancy that they could "handle most things that come their way." However, self-efficacy was higher on measures of getting information needs met and getting people to listen. Controlling for other factors, better conversation ability was significantly associated with higher self-efficacy on two measures: handling most things and getting needed information. Blacks had a lower likelihood of seeing themselves as disabled and a lower self-efficacy rating related to getting others to listen. This particular finding underscores the importance of examining racial disparities, a topic that has frequently been ignored by research on outcomes and services for adults on the autism spectrum [ 46]. Together, these findings suggest the need for interventions to improve self-efficacy and an understanding of disability identification, especially among blacks and those with more severe impairments.

Students with STEM majors reported lower self-efficacy on the measure of being able to "handle most things that come their way." At first glance, this might seem to suggest STEM majors on the autism spectrum need to be targeted for supportive assistance. However, a recent study found that ASD students in STEM majors who only attended a 2-year college had a higher likelihood of persisting compared with their non-STEM ASD peers [ 2]. This counter-intuitive finding about self-efficacy and college persistence among STEM majors deserves further investigation. It could be that there are aspects of participating in a STEM major that buffer the impact of lower self-efficacy. It is also possible that STEM majoring presents students with greater challenges than non-STEM majoring, thereby lowering the sense of self-efficacy.

Future research should examine whether the students who do not self-report having a disability truly believe they have no disability or simply do not wish to acknowledge their disability in the context of a survey. Furthermore, there needs to be a careful examination of the link between disability identification and the formal disability disclosure and self-advocacy required to receive needed supports and accommodations during college.

We acknowledge several limitations of these findings. Self-efficacy has been measured many different ways in past research. As noted, we carefully selected three questions based on face validity and consistency with questions from validated instruments. However, we cannot tell with absolute certainty the degree to which they correspond with validated measures of self-efficacy. Our results cannot directly support a directional causal conclusion about the relationship between communication skills and self-efficacy. Additionally, disability identification was measured at one point in time. However, self-report of having a disability may not be temporally stable. The analysis plan was constrained by the list of covariates available in the data set-an inherent challenge when working with secondary data. Finally, the NLTS2 sampling approach made it impossible to examine the experiences of youth on the autism spectrum who did not participate in special education during high school compared to who did so but under a different reporting category than autism.

Strengths of this study include the nationally representative nature of the data, yielding population-level results reflective of the socioeconomic diversity of college students with ASD. A unique strength of this report is the use of self-report data to learn more about the subjective experience of this population.

Disclaimer

This paper's contents are solely the responsibility of the authors and do not represent the views of the National Institute of Mental Health, the Institute for Educational Sciences, or other funders.

Conflict of Interests

The authors declare that there is no conflict of interests regarding the publication of this paper.

Acknowledgments

This work was supported by funding to Dr. Shattuck from the Emch Foundation, Autism Speaks, the National Science Foundation (HRD-1130088), and the National Institute of Mental Health (R01 MH086489), and to Dr. Newman from the Institute for Educational Sciences (R305A120300).

References

1. Interagency Autism Coordinating Committee, "Strategic plan for autism spectrum disorder research," Department of Health and Human Services Interagency Autism Coordinating Committee, 2011, View at: http://iacc.hhs.gov/strategic-plan/2011/index.shtml. Google Scholar

2. A. Bandura, Self-Efficacy: The Exercise of Control, Worth, New York, NY, USA, 1997.

3. E. Erikson, Identity: Youth and Crisis, W.W. Norton & Company, New York, NY, USA, 1968.

4. J. J. Arnett, Emerging Adulthood: The Winding Road from the Late Teens through the Twenties, Oxford University Press, New York, NY, USA, 2004.

5. M. Oliver, "Defining impairment and disability: issues at stake. Exploring the divide: illness and disability," 1996, View at: http://www.disability.co.uk/sites/default/files/resources/ex%20div%20ch3.pdf. Google Scholar

6. "National Longitudinal Transition Study II," (NLTS2) Sampling Plan, SRI International, Menlo Park, Calif, USA, 2000. View at: Google Scholar

7. A. Bandura, Guide for Constructing Self-Efficacy Scales. Self-Efficacy Beliefs of Adolescents, Information Age Publishing, Charlotte, NC, USA, 2006.

8. K. Lorig, P. Stewart, V. González, D. Laurent, and J. Lynch, Outcome Measures for Health Education and Other Health Care Interventions, Sage, Thousand Oaks, Calif, USA, 1996.

9. "IVEware: Imputation and Variance Estimation Software," Survey Methodology Program, Survey Research Center, Institute for Social Research, University of Michigan, Ann Arbor, Mich, USA, 2002. View at: Google Scholar

10. D. Rubin, Multiple Imputation for Nonresponse in Surveys, John Wiley & Sons, New York, NY, USA, 1987.

11. Drexel University, "Drexel Autism Support Program," View at: http://drexel.edu/provost/aard/resources-programs/autism-support/. Google Scholar

12. Marshall University, "The college program for students with Autism Spectrum Disorder," View at: http://www.marshall.edu/collegeprogram/. Google Scholar

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Disability Identification and Self-Efficacy among College Students on the Autism Spectrum

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The number of youth on the autism spectrum approaching young adulthood and attending college is growing. Very little is known about the subjective experience of these college students. Disability identification and self-efficacy are two subjective factors that are critical for the developmental and logistical tasks associated with emerging adulthood.

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In response to the Covid 19 pandemic, I felt more at ease with the transition from campus to online courses. One thing that has made me happy is that the risk of exposure is reduced with working in a less crowded setting. I also feel there is more flexibility not having to commute between multiple classrooms.

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Address for correspondence: David Farrugia, Australian Youth Research Centre, The University of Melbourne, Parkville, Victoria 3010, Australia e‐mail: d.farrugia2@pgrad.unimelb.edu.au

Abstract

This paper analyses 12 parent interviews to investigate the stigmatisation of parents of children diagnosed with an autism spectrum disorder. Drawing on poststructural accounts of the relationship between knowledge and subjectivity, the stigma concept is critically interrogated in order to address previous individualistic constructions of stigmatisation and to place stigma within the power dynamics of social control. The results of the study indicate that a child's diagnosis with an autism spectrum disorder (ASD) is critical for parents to resist stigmatisation. Parents experienced considerable enacted stigma, but successfully resisted felt stigma by deploying medical knowledge to articulate unspoiled subject positions. The institutionalisation of medical knowledge within the autism community was critical to this process. Resistance to enacted stigma was successful to the degree that medical constructions of deviance deployed by parents were accepted by others, notably those in power within institutions. It is concluded that poststructural accounts of subjectivity and social control provide a useful way of conceptualising stigmatisation. An acceptance of the painful nature of stigma as lived experience co‐exists with an emphasis on the constantly negotiated nature of embodied subjectivity as a contingent social process to illustrate the conditions for active resistance to stigmatisation.

Introduction

The autism spectrum describes a range of developmental disorders most commonly diagnosed in early childhood which influence the social and cognitive abilities of those diagnosed. Children who, after diagnosis, are constructed as occupying a position 'on the spectrum,' regularly breach social norms in face‐to‐face interaction, often have language difficulties, and may display antisocial behaviours in the form of withdrawal, aggression, or self‐stimulation, sometimes as a reaction to stress or changes in routine. For parents, these behaviours can lead to humiliation, social exclusion and isolation ( Gray 1993, 2002). The influence that this has on parents' construction of biographical identity and negotiation of the social world have been described using the concept of courtesy stigma ( Goffman 1964) to argue that parents of children diagnosed with an autism spectrum disorder (ASD) must manage a 'spoiled' social identity due to the stigmatising nature of their child's diagnosis ( Gray 1993, 2002).

Whilst Goffman's paradigm has remained the dominant theoretical foundation for examinations of stigmatisation in the sociology of health and illness, criticisms of the perspective have argued that a failure to consider structural power relationships, and a tendency to position the stigmatised as powerless victims, have led to empirical conclusions which are limited in analytical scope and apolitical. A focus on management rather than resistance, and a purely micro‐social focus divorced from any wider structural context have led some authors to argue that the stigma concept should be abandoned ( Oliver 1990), or reconstructed in the light of developments in social theory since Goffman's writing ( Scambler 2004). The purpose of this paper is to evaluate and reconstruct the stigma concept, and therefore to better understand the stigmatisation of parents of children diagnosed with autism spectrum disorder (ASD).

Conceptual fields

Medical knowledge of ASD

As would be expected, changing explanations for the aetiology of ASD reflect broader trends in the currency of different bodies of knowledge in psychiatry and medicine. Kanner (1943) initially viewed autism as the result of an interaction between hereditary predispositions and parenting (specifically mothering) styles, and psychoanalytic discourses in the 1960s constructed autism as exclusively the result of 'cold' mothering. Through the popularisation of psychoanalytic thought, this 'refrigerator mother' thesis enjoyed significant attention from the wider community, beginning to fade only with the rise of the cognitive paradigm in the 1970s. The increasing importance of cognitive and then biogenetic science eventually removed the association between autism and parenting, and in the process constructed a new kind of autistic subject position ( Nadesan 2005).

Cognitive and biogenetic paradigms now form the basis for most research into ASD. The aetiology of ASD is assumed to be biogenetic, and whilst an increasingly sizeable body of literature continues to investigate the biological and genetic basis for ASD, a specific biogenetic cause has not been established ( Rutter 2005).

The cognitive paradigm views ASD as a particular kind of information processing deficit related to brain structure. In a wide ranging analysis of the social construction of ASD, Nadesan (2005: 126) argues that the view that ASD is an information processing deficit constructs those diagnosed with ASD as embodying a particular kind of 'autistic' intelligence, the nature of which is defined through a reification of both 'normal' rationality and a dehumanised 'autistic' subjectivity, whilst the biogenetic paradigm rests on an uncritical reduction of mind to biology (2005: 174). Thus, while these paradigms remove the pejorative associations of the 'refrigerator mother' thesis, these discourses construct a distinct, ontologically different, autistic subject position.

Medical knowledge and parents of disabled children

Gray (1993, 2002) shows that parents of children diagnosed with ASD experience considerable stigmatisation due to the socially inappropriate behaviour of their children. Regular breaches of social norms in social situations can lead to feelings of shame and humiliation, as well as exclusion from normal social activities. Gray argues that the normal physical appearance of those diagnosed with ASD makes these behaviours more stigmatising for parents (2003: 742‐3). Thus, whilst the 'refrigerator mother' thesis has passed out of professional and lay discourse around ASD, the complex and challenging nature of the behaviours associated with ASD, the normal physical appearance of diagnosed children, and the construction of the autistic subject position as ontologically other, places parents of children diagnosed with ASD in a difficult and ambiguous position regarding their views of their children, and, by association, their families and themselves. Resistance to the potential stigmatisation which Gray's work identifies as being associated with parenting a child diagnosed with ASD requires a negotiation and interpretation of the discourses constructing the intelligible subject positions that diagnosed children are said to embody. Parents must 'come to locate, interpret, and often to advocate for the personhood of one they would previously have known only as 'the other'' ( Landsman 2003: 1948).

Stigma?

In addressing these issues, this paper reconstructs the meaning of stigma in an effort to move beyond the largely descriptive, micro‐social emphasis of previous stigma concepts and to establish stigma as a concept with increased power and analytical value. Rather than a focus on the management of discrediting marks, this paper is based on the premise that stigmatisation concerns identity construction in the context of social control. Stigmatisation is conceptualised as a socio‐cultural process which operates to reproduce structural power relationships and exclude stigmatised individuals from the social world ( Parker and Aggleton 2003). If, as Parker and Aggleton argue, 'stigma and stigmatisation function, quite literally, at the point of intersection between culture, power and difference ' (2003: 17, emphasis in original) then analysis of stigma and resistance must become an examination of subjectivity and negotiation of the power relationships structuring the social world. Addressing these issues may result in a stigma concept which can remain a powerful heuristic in researching the social lives of parents of disabled children.

Within this framework, I define felt stigma as the experience and articulation of a subject position discursively constructed as ontologically inferior (in Goffman's terms, 'spoiled'). I define enacted stigma as an overt political/discursive act of power for the purposes of social control which attempts to position the stigmatised as spoiled. Resistance to stigmatisation must therefore involve the negotiation of structural/discursive contexts to articulate unspoiled subject positions and negotiate an unspoiled social identity in face‐to‐face interaction.

Drawing on the conceptual field thus articulated, this paper examines the social life of parents of children diagnosed with ASD. Through analysis of parents' accounts of their sense of self, and their face‐to‐face experiences in different social contexts, the aim is to analyse the consequences that parenting a child constructed as ontologically other has for parents of children diagnosed with ASD and the influence that the changing and sometimes ambiguous nature of medical knowledge of ASD has on this process. The utility of the stigma concept thus articulated can thereby be evaluated.

Sample and methods

Participants were contacted through an Australian support group for parents of children diagnosed with ASD. The sample consisted of 16 participants, 11 mothers and five fathers, with a total of 12 semi‐structured interviews ranging from one to three hours in length. Four interviews were conducted with both the mother and father of the child present, and one interview with the father alone. All others were with the mother only. All participants were from an Anglo‐Saxon background and the majority could be described as middle class with the exception of one working class father. Participants were parents of children ranging in age from five to 23 years old.

Most interviews took place at the participants' home, with the exception of one interview at a café and one at the participant's place of work. Questions asked aimed to cover all aspects of the influence having a child with ASD had on the lives of participants. Themes discussed included parenting, changes to social lives, changes to daily activities, and encounters with institutions. Some themes, such as constructions of identity, normality and the character of family life, were brought up spontaneously by all participants.

Interviews were recorded and fully transcribed. Since part of the eventual analysis concerned the discursive construction of subjectivity, discourse analysis ( Burman and Parker 1993) was used to analyse participants' accounts of their sense of self. Discourse analysis 'offers a social account of subjectivity by attending to the linguistic resources by which the socio‐political realm is produced and reproduced' ( Burman and Parker 1993: 3). Discourse is viewed as a social practice in the context of social relations of which some are material, some institutional, some micro‐social, and all related to power. Discursive practice acts to reproduce and constitute these social relations, as well as the subjectivities of the speaking subjects. Analysis proceeded by coding interview fragments according to qualitative data coding techniques ( Neuman 2006) to identify the subject positions which participants articulated, the discourses constituting these subject positions, and the ways in which discourses were deployed in order for the participants to speak their selfhood.

Following Silverman (1987), accounts of face‐to‐face encounters were informed by both interactionism and discourse analysis. The deployment of social identities was taken as a political, discursive strategy designed to exercise agency within the structural context of the interaction ( Silverman 1987).

Concerns of validity and reliability were addressed through the use of the constant comparative method, and deviant case analysis ( Silverman 2001). Hypotheses on social processes were drawn from the actual data, with constant reference back to the data as analysis progressed. Categories emerging from the data evolved as analysis progressed towards the final themes. The use of deviant case analysis, as well as comprehensive data treatment, resulted in an analysis that could account for all of the data without exception.

Subjectivity, stigma and resistance

The results of the study will be presented as a narrative covering pre‐diagnosis issues, reconstruction of subjectivity and family life, and the influence of setting on the negotiation of face‐to‐face interaction.

Discursive reconstructions of subjectivity following diagnosis

The meaning of diagnosis

Participants described their child's diagnosis as a positive event, since it provided an explanation for the difficulties participants were having in parenting their diagnosed children. Before diagnosis, parents experienced feelings of failure and rejection by their children, often blaming the problems they were having on their own parenting. This was especially true for parents whose children had not been diagnosed as toddlers, and who therefore had had many years of trying to parent unexplainably difficult children. Parents (especially mothers) were frequently referred to parenting classes when seeking advice about how to deal with their children. All parents reported knowing that 'something was wrong' before actual diagnosis, and reported a certain degree of felt stigma until diagnosis provided them with another explanation:

Researcher: When you had the diagnosis did it actually change anything for you, having the actual diagnosis?

Participant: It made me feel better, a lot better about my parenting...I had all the parenting training, all the community organisations, there's lots of parenting courses and...I attended...several parenting courses all...And it didn't seem to be getting the results that other people say they've either got or the courses led you to believe you would expect to get. So I wasn't getting those. [From the mother of a teenager with Aspergers.]

The support group that this sample was drawn from emphasises a biogenetic aetiology for ASD, assuming an innate, biological foundation for the behaviour of children diagnosed as 'on the spectrum'. This removes guilt or shame about parenting, and diagnosis is an especially important event since the normal physical appearance of children diagnosed with ASD can make interpreting their disruptive behaviours difficult and ambiguous for parents. The pre‐diagnosis subjectivity of parents of children in the study can be described as spoiled. They considered themselves, and were seen by others, as bad parents with naughty children. Following diagnosis, they are able to reinterpret and medicalise the meaning of their children's socially inappropriate and difficult behaviour, allowing the articulation of an unspoiled subject position through the creative, agentic use of medical discourse which will be described below ( cf. Kelly 2005, Rehm and Bradley 2005 for similar processes in the context of other disabilities).

Changes in family life

Gray (1997) illustrates the challenges that the socially inappropriate behaviour and strong preference for routine associated with ASD creates for the performance of what is conventionally viewed as a normal family life. Participants in the present study described the influence a child with ASD has on family life in terms of their houses and family routines becoming structured around the needs of the diagnosed child, with some participants even referring to theirs as 'autism households'. As a result of the needs of children, the activities of an autism household are directed by strict routines governing all aspects of life, variations on which can have disastrous consequences:

Researcher: So what's it like, I mean, has it influenced his sibling's social lives a lot?

Participant: Absolutely. Massively. I try to avoid it but basically the house is structured around the needs of someone with autism...anything that we plan to do I think about the effect it's going to have on him and the effect he's going to have on it and whether it's worth it or not and whether there's another way, whether he can go somewhere else for a few hours. You do, you try and negotiate it because you don't want the others missing out. Um, I don't stop and get an ice cream after school. I tried that once and the change in routine was such a horrible experience that I wouldn't do it again.

Researcher: Horrible how?

Participant: Um because that was when he was younger and he doesn't cope well with changes in routines. So it led to six hours of tantrums or something like that. [From the mother of a child with Aspergers.]

The vital importance of routine and familiarity to a child diagnosed with ASD contributes to the separation of autism households from the rest of the community. In a discussion of changes to social life and friendship circles, the following participant claimed that other autism households were more 'comfortable' to visit, because the house had been made 'autism proof' with locks on doors and cupboards and a minimum of breakable ornaments displayed. Furthermore, norms concerning the requirement to interact are looser in autism households:

Participant: ... Long time friends that we've known from when we first lived in Sydney and have kept in contact with. They've got a bit of a medical background so they've got that awareness, even though they don't have the knowledge they've got that acceptance...So yeah, they're not ignorant to things. Associating with autism families is just so much more comfortable because nothing fazes them...

Parents who did not describe their households in this way included those who had children with relatively mild positions 'on the spectrum', who did not require the routine or tolerance from others for disruptive behaviour that other children diagnosed with ASD did. The process of structuring family life around the needs of the diagnosed child (becoming a more 'autistic household'), while necessary for the family to be able to function given the 'whirlpool at the centre of the family', also sets parents of children diagnosed with ASD apart from the rest of society. This change in family life is a restructuring of social routines with the needs of the diagnosed child in mind, as well as a reconstruction of family norms according to discourses of parenting, family life, and 'normality' very different from those prevailing in the wider community. As the next section will illustrate, these discourses are institutionalised in, and drawn from, medicine, psychology, and autism support groups.

Enacted stigma and the strategic reconstruction of normality

Enacted stigma

All parents reported changes to their social circle due to direct enacted stigma on the part of previous friends, many suggesting that they lost around half of their friends in this way:

Participant: Like uh we discovered really who your friends and that are. Because their social skills and that aren't up to speed. So you go to their place and you know it'll be a case rather than where you can tell the child well look you can't touch anything, you can't tell them that, they do. So a lot of people will be 'oh yes you can come around but can you not bring the boys they're a bit loud' or this and that. Well our motto is it's one in all in so.

Researcher: So does that mean that um your circle of friends changed?

Participant: Yep. Considerably.

And later:

Researcher: Right okay. So you said you found out who your friends really were. Does that mean you stopped hanging out with some people?

Participant: Nah they stopped hanging out with us. All of a sudden you know it was 'come around to our place but don't bring the kids' or um they'd come around and they'd just be sitting here rolling their eyes all the time because like Daniel and Alex you know will interrupt and everything and they just didn't have patience for it. [From the father of two children with 'classic' autism.]

Enacted stigma was reported by all participants whose children's behaviour was regularly socially inappropriate. Parents attributed enacted stigma to a rejection of the medical construction of their children's behaviour deployed by parents in favour of an explanation which focused on parenting:

Researcher: So who did you, when it dawned on you that there was something different about him who did you tell? Do all of your friends and family know?

Participant: All of my friends know. I lost a lot of friends because they were very unsupportive of my efforts to deal with his behaviour and they didn't necessarily see my explanation of his behaviour as being accurate. I've got new friends and I'm very up front with people because it's a huge part of my life. They need to know that and I'm not going to waste any of my time with them if they're not.

Researcher: How do you mean people were unsupportive?

Participant: 'You're being a bad mother. He's behaving like that because you don't discipline him. If you did it this way you wouldn't have problems.' That kind of stuff...you know, it doesn't help.

This example illustrates the importance of the autistic label. As Gray (1993) points out, the socially inappropriate behaviour and otherwise normal appearance of children diagnosed with ASD can make the disorder especially stigmatising for parents despite the prevalence of biogenetic explanations for the disorder in professional discourse. The normal physical appearance of diagnosed children means that parents must intentionally deploy a medical construction of their child's socially inappropriate behaviour in order to avoid being stigmatised. If the medical explanation for their child's behaviour is not accepted by others they are treated as bad parents, a stigmatised subject position.

Strategic reconstructions of normality

Participants in the present study joined the support group from which the sample was drawn in response to a need for advice and support, as well as enacted stigma. Through the support group, participants come into contact with other parents of children diagnosed with ASD, as well as professionals such as psychologists and pediatricians.

In describing their ties with these institutions, and articulating their constructions of themselves and their children, participants position themselves in what some described as the 'world of autism': the interpersonal ties which the support group leads to provide emotional support to parents, creating a space in which parents come into contact with autistic discourses, drawn from medicine and psychology, that construct them as unspoiled subjects. Chamak (2008) shows that support groups can become politically active in promoting biogenetic explanations of ASD in contexts where explanations for ASD continue to stigmatise parents. Similar to the process reported by Gubrium and Holstein (1993), this Australian support group institutionalises discursive constructions of family life that give new meaning to participants' families. In positioning themselves in a 'world of autism', parents make an effort to research the nature of ASD in an effort to know as much about the disorder as possible. This knowledge provides them with the power to resist stigmatisation, since as will be shown, parents cite medical discourses in articulating unspoiled subject positions.

It is not the contention of this paper that the autistic label has no pejorative implications for children or parents. The diagnosis is emancipatory in the sense that it constructs parents as unspoiled, although not 'normal'. Aware of the pejorative implications which a diagnosis has for their children, parents' notions of normality are reconstructed in such a way as to cite medical discourses whilst avoiding the negative implications this has for their child's social identity.

Whilst this process of strategic reconstruction was negotiated differently by all participants, some common strategies can be identified. Parents were at pains to construct the social and cognitive difficulties of their children medically. Nevertheless, this was not a straightforward process. Parents recognised that there were certain pejorative implications of the autistic label. Therefore, resistance to stigma placed them in an ambiguous position with regard to medical constructions of themselves and their children. Parents did not merely accept straightforward medical definitions of their children. Rather, in a process similar to that described by Kelly (2005) and Rehm and Bradley (2005) parents constructed their children medically when accounting for their behavioural problems, but asserted their individuality and intrinsic human worth at other times, rejecting pejorative implications of the autistic label in favour of other constructions drawn from the lifeworld. A clear example of this is that of the following couple, parents of a young child with classic autism who regularly exhibited some socially inappropriate behaviour and had almost no language, as well as having one other disorder mildly influencing his physical development.

Early in a discussion about their perception of community attitudes towards ASD, this mother and father describe the way they presented their child to the rest of his school upon enrolment:

Mother: We ended up writing a letter from Terry just about who he was. And first and foremost he was a child and not you know

Father:  An autism.

Mother: Not autism. And just explained a few of the little things and the little quirks that he has and maybe if you get to know him you know, keep trying to interact because one day he'll turn around and play. Most mums now give me the kind smile and 'okay, stay right away from you'. And there's about three that've actually gone 'oh tell me more about him ...'

Concerned about the environment their child was to enter, these parents wrote a letter outlining that their child had ASD, but also emphasising his individual characteristics. However, soon afterwards they go on to construct their child in purely medical terms when talking about problems he has had:

Mother: And I guess...with that genetic situation there is, we know it's called a marker chromosome and it's on chromosome 15. And what's actually happened is that it's an extra bit and that extra bit has actually broken off. And because they have no other cases to compare him to then there is no label as such. So he doesn't have, he didn't have that for so long and this was like we have to wait and see.

Despite this purely biological discourse, these parents assert the individuality and uniqueness of their child. Then, in further describing the way they explain their child to visitors, they reject the autistic label, preferring instead to describe their child as a 'special needs child'. They considered this a more ambiguous construct, a kinder, less pejorative label that encouraged visitors to be more forgiving of social transgressions, whilst avoiding the negative implications they felt were associated with the specific label of autism:

Researcher: So why a special needs child rather than autistic? Do you think there are negative attitudes towards autistic people in the community?

Father:  Yes absolutely.

And later:

Mother: I think that the terminology of special needs child is far more acceptable than whether it be autism or whether it be cerebral palsy or you know anything like that. As soon as you say 'he's a special needs child' people are just more accepting.

Avoiding the specific implications of ASD, 'special needs child' is a more flexible construct for parents to deploy when presenting their family to others.

Many parents used the nature of ASD as a 'spectrum' to affirm the individuality of their child. Generally, the 'place on the spectrum' that parents constructed their children as occupying was one that explained the child's inappropriate behaviours without placing limits on what their children could achieve in their lives, and emphasised their child's individuality. The concept of the autism spectrum allows parents to deploy legitimate medical discourses to affirm the individuality of children. Contact with the world of autism, and especially the support group, was vital to this process:

Participant: What I've done by going to all those workshops and reading about the disabilities and, and normal managing, some of the courses were called 'managing normal behaviours' which means that temper tantrums um you know pooing their pants, they're all normal behaviours. And some children manage to get over it by the time they're five and some take until they're 11 but they are normal behaviours and some are emotional responses and it's just observing. Sometimes just making mental notes of when these things happen and what happened, what did they eat that day, what did they eat the day before, what things happened that might have caused this, if you want to look for a physical reaction the pooing, what's happened that this has sort of happened. So it is very trial and error, you have to deal with your own situation and knowing that they're all normal behaviours.

Researcher: So it helps to know what's normal in the context of ASD in terms of...

Participant: Um yes. Yes. It does help to know. It helps to know um what is normal, how to look in within yourself. [From a mother discussing her experience with workshops run by support groups.]

In the present context it is clear that for parents, the medical definition of ASD is ambiguous, allowing considerable creative space for parents to articulate unspoiled selves ( cf. Whitmarsh et al. 2007). The medical label is deployed in creative ways when constructing the social identity of their child and their family, this reconstruction reflecting parents' own subjectivity. Their subject position, and the social identity they deploy in face‐to‐face interaction, is not 'autistic by association' in the way one would expect, following the description of courtesy stigma provided by Goffman (1964). Rather, stigmatisation is resisted through a complex discursive process designed to result in an unspoiled subject position for themselves and a manageable, unstigmatised identity for their children:

Participant: Their okay and our okay are two very different things. And Terry's okay is a different thing again. Yes he will be okay, but he will never be like any other child in the world. He's on the spectrum and so therefore he's different even to other children on the spectrum. Um but he will be okay. That's normal. But he mightn't be their okay. He'll be his okay and our okay. But he mightn't necessarily be their okay. [When describing family attitudes towards his child's development.]

Reports of felt stigma were very rare, and all parents who reported any felt stigma asserted a recognition that it was unjustified, and claimed that they rarely had such feelings. By positioning themselves through the 'world of autism' construct and the discourses on parenting, social behaviour and normality institutionalised within the support group and professional discourse, parents are able to articulate an unspoiled subjectivity through a reconstruction of ideas of difference and normality. Parents cite medical discourse to articulate unspoiled subject positions, and continue to do so in response to enacted stigma. Support groups are a vital space for this reconstruction of normality to take place. As has been suggested above, however, processes of stigmatisation are influenced by the extent to which medical constructions of their children are accepted by others, a process which is well illustrated by parents' accounts of their experiences in public places and schools.

The influence of setting: public situations and institutions

As this paper has argued, the nature of ASD means that resistance to stigmatisation is contingent upon parents' capacity to deploy medical discourses constructing their children as sick and themselves as unspoiled. In face‐to‐face interaction, the result of these efforts is mediated by the setting in which interactions take place. Settings which limited the capacity to deploy unspoiling discourses resulted in enacted stigma.

Public situations

The nature of face‐to‐face interaction in public makes deploying medical constructions of their child's behaviour difficult for parents. As this paper has argued, without a medical definition of their children, parents are once again positioned as 'bad parents with naughty children'. Therefore, most parents reported significant enacted stigma in public situations. Many parents restricted their daily activities to avoid public situations with their children, which whilst avoiding enacted stigma, contributes to the position of autism families as separate from the wider community.

Similar to Gray (1993), enacted stigma in public consisted of 'looks' or 'glares', as well as unsought‐for advice about parenting, the most common of which was the advice that they should smack their children. The importance of medical discourses in resisting stigma is illustrated by the fact that the support group through which participants were recruited produces and distributes cards for use in public situations. The purpose of these cards is explicitly to avoid stigma by deploying medical constructions of children. On the front are the words 'Please don't let my child's behaviour concern or upset you...' and inside is printed 'My child has Autism Spectrum Disorder...' followed by a description of ASD as 'a neurological disorder that causes problems with communication, behaviour and learning'. Some parents reported the occasional desire to put a shirt or a sign on their child that said 'I have autism', in order to make public situations less stigmatising.

Enacted stigma in public was commonly reported as being caused by the difficulty participants had in presenting their children, who look normal but behave inappropriately, as 'on the spectrum' to the general public. Passing is impossible due to the nature of their child's behaviour, and their status as 'bad parents' gives them very little power to define social situations. Their only legitimate strategy, deploying the medical label, is made problematic by the anonymity of face‐to‐face encounters in public. However, parents' self perceptions were generally unchanged by public reactions to their children. While many reported embarrassment resulting from public enacted stigma, they still constructed their children medically: felt stigma is fleeting and extremely rare.

Institutions

The process of stigmatisation as it occurs in institutional settings is an effective illustration of the way structural power influences stigma and social identity. Institutions, most notably schools, are settings in which parents are obliged to engage in strategic measures in order to have their children defined as ill, and hence to avoid stigma. Whether or not an encounter within an institution was stigmatising depended on the extent to which these discursive strategies were resisted by those in power.

The situation most commonly reported as stigmatising was that in which schools responded to behavioural problems in ways that were contrary to the advice of professionals in the world of autism, due to their refusal to fully accept the medicalisation of the child's behaviour. Parents attributed the resulting lack of success in managing the behaviour to the inappropriate nature of the strategies used, and reported stigmatisation from school authorities, who blamed parents for this lack of success:

Participant: The deputy principal was...hideous. She'd call me up, and she would call me to the school and have me in the office with Andrew sitting there and being a sook or whatever, grumping, pulling things off the wall and she'd be going 'Now...this just isn't good enough, he's done this and this and we're going to have to punish him' with her best school mum voice on. And I would feel this small, going 'but, but' and I felt like I was constantly making excuses for him, and she'd say 'well we know he's got a diagnosis but, can't you just talk to him...' I mean yes I can talk to him until I'm blue in the face but it's not going to help. They just had no concept whatsoever of what they were dealing with.

And later:

Participant: ...Seriously I'd go in there to pick him up from school and I'd come away feeling like I was on detention. Because she would just belittle everything he did and make it sound like I should have been able to talk him out of it or something. But she had absolutely no idea whatsoever.

The experience of two other participants, a mother and father, also illustrates this process. While their son was in an autism unit, they were dissatisfied with the quality of education he was receiving. The executive teacher at the school was experienced in education for disabled children, but these participants felt that her failure to understand or accept the implications of autism led to their parenting being questioned nevertheless:

Participant 1: ...one of them in particular her favourite comment is 'we've got to lift the autism off the boy'.

Participant 2: And she is an executive teacher supposedly with long experience with children with disabilities.

And later:

Participant 1: I mean this particular person that we're both thinking of has mentioned probably over the last 12 months 'oh you need to let us know if there's anything happening at home or if there's any stresses from home that he's bringing to school' as if to say well it's only happening at school because it's happening at home. And we keep saying 'well it's not happening at home'. Yes he's showing signs of stress like this sort of anger talk [their son is screaming in the background] um and those are happening but I said that sort of stuff is more a result of what's happening at school rather than the other way around. But I think because she can see without admitting that there is issues at school, doesn't want to acknowledge them because then that puts them in the wrong and they have to fix it. No she'd much prefer to put the blame on to us.

The language used by the executive teacher above ('lift the autism off the boy') suggests that this teacher accepted that this child had a diagnosis, but considered it somehow ontologically peculiar to the child, refusing to honour an identity defined by ASD. Since this teacher had had the family assessed by psychologists, this may indicate the continued currency of psychoanalytic constructions of ASD.¹ Alternately, and in keeping with the views of this participant, this teacher's actions may be viewed as a discursive strategy designed to reject an entirely autistic identity, and therefore validate behavioural intervention methods being used by the school. Regardless of which is the case, this example illustrates that the history and continued ambiguity of medical knowledge around ASD means that this power/knowledge can operate in different ways depending on the power relationships involved.

These parents resisted the idea that autism was somehow peculiar to their child. In avoiding stigma in the face of resistance to medical constructions of their child's behaviour, they asserted many times their child's autistic master status ( Hughes 1945). In their meetings with their child's school, parents used the services of psychologists, who came to meetings with school authorities after having observed their parenting style at home. This strategy was used by parents to validate the quality of their parenting, enlisting the professional power of psychology to promote an autistic social identity for their child. Furthermore, felt stigma remained successfully resisted despite enacted stigma in institutional settings.

Conclusion

Gray (2002) speculates that whilst biogenetic explanations for disorders have the potential to reduce stigmatisation of parents, it is not clear whether this will be the case for parents of children diagnosed with ASD. The central finding of this research is that these medical discourses are strategically deployed by parents of children diagnosed with ASD to resist stigmatisation. Parents resist felt stigma by articulating subjectivities discursively positioned in a 'world of autism', a discursive setting which constructs parents as unspoiled. Enabled by the ambiguity intrinsic to the medical construction of ASD as a spectrum, parents engage in a strategic reconstruction of normality, creatively citing medical knowledge to articulate an unspoiled subject position ( cf. Whitmarsh et al. 2007). This creative process means that felt stigma in this sample was extremely rare despite the loss of friendships through enacted stigma. As a caveat, it must be noted that since this (relatively small) sample was entirely drawn from parents active in support group activities, this close involvement with institutionalised knowledge is likely to have influenced the prevalence of this kind of discursive strategy in this research.

Stigma management in public situations was made difficult by the anonymous nature of face‐to‐face interaction in public, with parents experiencing enacted stigma due to the difficulty of deploying medical constructions of their children's deviance. In schools, medical constructions of deviance were sometimes met with resistance by those in positions of authority, resulting in the need for resistance aided by legitimate professional power in the form of psychologists. This active disclosure of otherness runs contrary to Goffman's (1964) assertion that the stigmatised manage information in order to prevent others from discovering their status, illustrating the agency‐enabling character of knowledge for this group.

Parents of children diagnosed with ASD successfully negotiate and perform an unspoiled subject position. This is a subject position that can not be described as stigmatised, since no parent reported feeling inferior or devalued. This is a subjectivity that is constructed as a different kind of normality, the performance of which parents value (cf Kelly 2005, Rehm and Bradley 2005, Landsman 2003). However, it is important to note that this articulation and performance is contingent upon an acceptance of their child's ontological difference as an autistic subject. Only through citation and creative iteration of these discourses can this subject position be articulated. This ongoing performance therefore reproduces the power of the discourses which create their child's difference. Whilst stigmatisation is resisted, this strategy prevents subversion of the discursive construction of the autistic subject as other. Medical knowledge enables resistance to stigmatisation at the cost of othering the child diagnosed.

Informed by these findings, the concept of felt stigma describes the experience of an ontologically inferior subject position, resistance to which requires a structural (discursive) context which constructs the subject as unspoiled. Enacted stigma in face‐to‐face encounters is enabled by the discursive construction of identity as it is expressed through power relations in a micro‐social setting. Resistance to this political act requires others to accept unspoiled definitions of the social actor, the legitimate range of which is discursively produced. Furthermore, it must be noted that in the poststructural account of agency as produced by temporality, in the space between discourse and iterative performativity ( Butler 1997), it is clear that no subject position is ever fully actualised. Subjectivity is a process, performativity a constant negotiation of the discourses which constitute the subject. Indeed, it is the impossibility of fully actualising any subject position that reveals stigmatisation as a constantly contingent social process and sensitises empirical research to the importance of resistance. Whilst acknowledging this, the characterisation of certain subject positions as spoiled or unspoiled allows stigma research to maintain a focus on the social control element of stigmatisation and the painful lived experience of being stigmatised. The tension between the somewhat static characterisation of a subject position as spoiled and the constantly contingent nature of subjectivity as a process is useful to enliven stigma research, and does not reduce the usefulness of stigma as a concept.

Acknowledgements

My thanks go to Kevin White for his support during the time this research was being conducted, Johanna Wyn for suggestions on early drafts of this paper, and the anonymous referees of Sociology of Health and Illness for their valuable comments.

Abstract

This paper analyses 12 parent interviews to investigate the stigmatisation of parents of children diagnosed with an autism spectrum disorder. Drawing on poststructural accounts of the relationship between knowledge and subjectivity, the stigma concept is critically interrogated in order to address previous individualistic constructions of stigmatisation and to place stigma within the power dynamics of social control. The results of the study indicate that a child's diagnosis with an autism spectrum disorder (ASD) is critical for parents to resist stigmatisation. Parents experienced considerable enacted stigma, but successfully resisted felt stigma by deploying medical knowledge to articulate unspoiled subject positions. The institutionalisation of medical knowledge within the autism community was critical to this process. Resistance to enacted stigma was successful to the degree that medical constructions of deviance deployed by parents were accepted by others, notably those in power within institutions. It is concluded that poststructural accounts of subjectivity and social control provide a useful way of conceptualising stigmatisation. An acceptance of the painful nature of stigma as lived experience co‐exists with an emphasis on the constantly negotiated nature of embodied subjectivity as a contingent social process to illustrate the conditions for active resistance to stigmatisation.

Introduction

The autism spectrum describes a range of developmental disorders most commonly diagnosed in early childhood which influence the social and cognitive abilities of those diagnosed. Children who, after diagnosis, are constructed as occupying a position 'on the spectrum,' regularly breach social norms in face‐to‐face interaction, often have language difficulties, and may display antisocial behaviours in the form of withdrawal, aggression, or self‐stimulation, sometimes as a reaction to stress or changes in routine. For parents, these behaviours can lead to humiliation, social exclusion and isolation ( Gray 1993, 2002). The influence that this has on parents' construction of biographical identity and negotiation of the social world have been described using the concept of courtesy stigma ( Goffman 1964) to argue that parents of children diagnosed with an autism spectrum disorder (ASD) must manage a 'spoiled' social identity due to the stigmatising nature of their child's diagnosis ( Gray 1993, 2002).

Whilst Goffman's paradigm has remained the dominant theoretical foundation for examinations of stigmatisation in the sociology of health and illness, criticisms of the perspective have argued that a failure to consider structural power relationships, and a tendency to position the stigmatised as powerless victims, have led to empirical conclusions which are limited in analytical scope and apolitical. A focus on management rather than resistance, and a purely micro‐social focus divorced from any wider structural context have led some authors to argue that the stigma concept should be abandoned ( Oliver 1990), or reconstructed in the light of developments in social theory since Goffman's writing ( Scambler 2004). The purpose of this paper is to evaluate and reconstruct the stigma concept, and therefore to better understand the stigmatisation of parents of children diagnosed with autism spectrum disorder (ASD).

Conceptual fields

Medical knowledge of ASD

As would be expected, changing explanations for the aetiology of ASD reflect broader trends in the currency of different bodies of knowledge in psychiatry and medicine. Kanner (1943) initially viewed autism as the result of an interaction between hereditary predispositions and parenting (specifically mothering) styles, and psychoanalytic discourses in the 1960s constructed autism as exclusively the result of 'cold' mothering. Through the popularisation of psychoanalytic thought, this 'refrigerator mother' thesis enjoyed significant attention from the wider community, beginning to fade only with the rise of the cognitive paradigm in the 1970s. The increasing importance of cognitive and then biogenetic science eventually removed the association between autism and parenting, and in the process constructed a new kind of autistic subject position ( Nadesan 2005).

Cognitive and biogenetic paradigms now form the basis for most research into ASD. The aetiology of ASD is assumed to be biogenetic, and whilst an increasingly sizeable body of literature continues to investigate the biological and genetic basis for ASD, a specific biogenetic cause has not been established ( Rutter 2005).

The cognitive paradigm views ASD as a particular kind of information processing deficit related to brain structure. In a wide ranging analysis of the social construction of ASD, Nadesan (2005: 126) argues that the view that ASD is an information processing deficit constructs those diagnosed with ASD as embodying a particular kind of 'autistic' intelligence, the nature of which is defined through a reification of both 'normal' rationality and a dehumanised 'autistic' subjectivity, whilst the biogenetic paradigm rests on an uncritical reduction of mind to biology (2005: 174). Thus, while these paradigms remove the pejorative associations of the 'refrigerator mother' thesis, these discourses construct a distinct, ontologically different, autistic subject position.

Medical knowledge and parents of disabled children

Gray (1993, 2002) shows that parents of children diagnosed with ASD experience considerable stigmatisation due to the socially inappropriate behaviour of their children. Regular breaches of social norms in social situations can lead to feelings of shame and humiliation, as well as exclusion from normal social activities. Gray argues that the normal physical appearance of those diagnosed with ASD makes these behaviours more stigmatising for parents (2003: 742‐3). Thus, whilst the 'refrigerator mother' thesis has passed out of professional and lay discourse around ASD, the complex and challenging nature of the behaviours associated with ASD, the normal physical appearance of diagnosed children, and the construction of the autistic subject position as ontologically other, places parents of children diagnosed with ASD in a difficult and ambiguous position regarding their views of their children, and, by association, their families and themselves. Resistance to the potential stigmatisation which Gray's work identifies as being associated with parenting a child diagnosed with ASD requires a negotiation and interpretation of the discourses constructing the intelligible subject positions that diagnosed children are said to embody. Parents must 'come to locate, interpret, and often to advocate for the personhood of one they would previously have known only as 'the other'' ( Landsman 2003: 1948).

Stigma?

In addressing these issues, this paper reconstructs the meaning of stigma in an effort to move beyond the largely descriptive, micro‐social emphasis of previous stigma concepts and to establish stigma as a concept with increased power and analytical value. Rather than a focus on the management of discrediting marks, this paper is based on the premise that stigmatisation concerns identity construction in the context of social control. Stigmatisation is conceptualised as a socio‐cultural process which operates to reproduce structural power relationships and exclude stigmatised individuals from the social world ( Parker and Aggleton 2003). If, as Parker and Aggleton argue, 'stigma and stigmatisation function, quite literally, at the point of intersection between culture, power and difference ' (2003: 17, emphasis in original) then analysis of stigma and resistance must become an examination of subjectivity and negotiation of the power relationships structuring the social world. Addressing these issues may result in a stigma concept which can remain a powerful heuristic in researching the social lives of parents of disabled children.

Within this framework, I define felt stigma as the experience and articulation of a subject position discursively constructed as ontologically inferior (in Goffman's terms, 'spoiled'). I define enacted stigma as an overt political/discursive act of power for the purposes of social control which attempts to position the stigmatised as spoiled. Resistance to stigmatisation must therefore involve the negotiation of structural/discursive contexts to articulate unspoiled subject positions and negotiate an unspoiled social identity in face‐to‐face interaction.

Drawing on the conceptual field thus articulated, this paper examines the social life of parents of children diagnosed with ASD. Through analysis of parents' accounts of their sense of self, and their face‐to‐face experiences in different social contexts, the aim is to analyse the consequences that parenting a child constructed as ontologically other has for parents of children diagnosed with ASD and the influence that the changing and sometimes ambiguous nature of medical knowledge of ASD has on this process. The utility of the stigma concept thus articulated can thereby be evaluated.

Sample and methods

Participants were contacted through an Australian support group for parents of children diagnosed with ASD. The sample consisted of 16 participants, 11 mothers and five fathers, with a total of 12 semi‐structured interviews ranging from one to three hours in length. Four interviews were conducted with both the mother and father of the child present, and one interview with the father alone. All others were with the mother only. All participants were from an Anglo‐Saxon background and the majority could be described as middle class with the exception of one working class father. Participants were parents of children ranging in age from five to 23 years old.

Most interviews took place at the participants' home, with the exception of one interview at a café and one at the participant's place of work. Questions asked aimed to cover all aspects of the influence having a child with ASD had on the lives of participants. Themes discussed included parenting, changes to social lives, changes to daily activities, and encounters with institutions. Some themes, such as constructions of identity, normality and the character of family life, were brought up spontaneously by all participants.

Interviews were recorded and fully transcribed. Since part of the eventual analysis concerned the discursive construction of subjectivity, discourse analysis ( Burman and Parker 1993) was used to analyse participants' accounts of their sense of self. Discourse analysis 'offers a social account of subjectivity by attending to the linguistic resources by which the socio‐political realm is produced and reproduced' ( Burman and Parker 1993: 3). Discourse is viewed as a social practice in the context of social relations of which some are material, some institutional, some micro‐social, and all related to power. Discursive practice acts to reproduce and constitute these social relations, as well as the subjectivities of the speaking subjects. Analysis proceeded by coding interview fragments according to qualitative data coding techniques ( Neuman 2006) to identify the subject positions which participants articulated, the discourses constituting these subject positions, and the ways in which discourses were deployed in order for the participants to speak their selfhood.

Following Silverman (1987), accounts of face‐to‐face encounters were informed by both interactionism and discourse analysis. The deployment of social identities was taken as a political, discursive strategy designed to exercise agency within the structural context of the interaction ( Silverman 1987).

Concerns of validity and reliability were addressed through the use of the constant comparative method, and deviant case analysis ( Silverman 2001). Hypotheses on social processes were drawn from the actual data, with constant reference back to the data as analysis progressed. Categories emerging from the data evolved as analysis progressed towards the final themes. The use of deviant case analysis, as well as comprehensive data treatment, resulted in an analysis that could account for all of the data without exception.

Subjectivity, stigma and resistance

The results of the study will be presented as a narrative covering pre‐diagnosis issues, reconstruction of subjectivity and family life, and the influence of setting on the negotiation of face‐to‐face interaction.

Discursive reconstructions of subjectivity following diagnosis

The meaning of diagnosis

Participants described their child's diagnosis as a positive event, since it provided an explanation for the difficulties participants were having in parenting their diagnosed children. Before diagnosis, parents experienced feelings of failure and rejection by their children, often blaming the problems they were having on their own parenting. This was especially true for parents whose children had not been diagnosed as toddlers, and who therefore had had many years of trying to parent unexplainably difficult children. Parents (especially mothers) were frequently referred to parenting classes when seeking advice about how to deal with their children. All parents reported knowing that 'something was wrong' before actual diagnosis, and reported a certain degree of felt stigma until diagnosis provided them with another explanation:

Researcher: When you had the diagnosis did it actually change anything for you, having the actual diagnosis?

Participant: It made me feel better, a lot better about my parenting...I had all the parenting training, all the community organisations, there's lots of parenting courses and...I attended...several parenting courses all...And it didn't seem to be getting the results that other people say they've either got or the courses led you to believe you would expect to get. So I wasn't getting those. [From the mother of a teenager with Aspergers.]

The support group that this sample was drawn from emphasises a biogenetic aetiology for ASD, assuming an innate, biological foundation for the behaviour of children diagnosed as 'on the spectrum'. This removes guilt or shame about parenting, and diagnosis is an especially important event since the normal physical appearance of children diagnosed with ASD can make interpreting their disruptive behaviours difficult and ambiguous for parents. The pre‐diagnosis subjectivity of parents of children in the study can be described as spoiled. They considered themselves, and were seen by others, as bad parents with naughty children. Following diagnosis, they are able to reinterpret and medicalise the meaning of their children's socially inappropriate and difficult behaviour, allowing the articulation of an unspoiled subject position through the creative, agentic use of medical discourse which will be described below ( cf., Rehm and Bradley 2005 for similar processes in the context of other disabilities).

Changes in family life

illustrates the challenges that the socially inappropriate behaviour and strong preference for routine associated with ASD creates for the performance of what is conventionally viewed as a normal family life. Participants in the present study described the influence a child with ASD has on family life in terms of their houses and family routines becoming structured around the needs of the diagnosed child, with some participants even referring to theirs as 'autism households'. As a result of the needs of children, the activities of an autism household are directed by strict routines governing all aspects of life, variations on which can have disastrous consequences:

Researcher: So what's it like, I mean, has it influenced his sibling's social lives a lot?

Participant: Absolutely. Massively. I try to avoid it but basically the house is structured around the needs of someone with autism...anything that we plan to do I think about the effect it's going to have on him and the effect he's going to have on it and whether it's worth it or not and whether there's another way, whether he can go somewhere else for a few hours. You do, you try and negotiate it because you don't want the others missing out. Um, I don't stop and get an ice cream after school. I tried that once and the change in routine was such a horrible experience that I wouldn't do it again.

Researcher: Horrible how?

Participant: Um because that was when he was younger and he doesn't cope well with changes in routines. So it led to six hours of tantrums or something like that. [From the mother of a child with Aspergers.]

The vital importance of routine and familiarity to a child diagnosed with ASD contributes to the separation of autism households from the rest of the community. In a discussion of changes to social life and friendship circles, the following participant claimed that other autism households were more 'comfortable' to visit, because the house had been made 'autism proof' with locks on doors and cupboards and a minimum of breakable ornaments displayed. Furthermore, norms concerning the requirement to interact are looser in autism households:

Participant: ... Long time friends that we've known from when we first lived in Sydney and have kept in contact with. They've got a bit of a medical background so they've got that awareness, even though they don't have the knowledge they've got that acceptance...So yeah, they're not ignorant to things. Associating with autism families is just so much more comfortable because nothing fazes them...

Parents who did not describe their households in this way included those who had children with relatively mild positions 'on the spectrum', who did not require the routine or tolerance from others for disruptive behaviour that other children diagnosed with ASD did. The process of structuring family life around the needs of the diagnosed child (becoming a more 'autistic household'), while necessary for the family to be able to function given the 'whirlpool at the centre of the family', also sets parents of children diagnosed with ASD apart from the rest of society. This change in family life is a restructuring of social routines with the needs of the diagnosed child in mind, as well as a reconstruction of family norms according to discourses of parenting, family life, and 'normality' very different from those prevailing in the wider community. As the next section will illustrate, these discourses are institutionalised in, and drawn from, medicine, psychology, and autism support groups.

Enacted stigma and the strategic reconstruction of normality

Enacted stigma

All parents reported changes to their social circle due to direct enacted stigma on the part of previous friends, many suggesting that they lost around half of their friends in this way:

Participant: Like uh we discovered really who your friends and that are. Because their social skills and that aren't up to speed. So you go to their place and you know it'll be a case rather than where you can tell the child well look you can't touch anything, you can't tell them that, they do. So a lot of people will be 'oh yes you can come around but can you not bring the boys they're a bit loud' or this and that. Well our motto is it's one in all in so.

Researcher: So does that mean that um your circle of friends changed?

Participant: Yep. Considerably.

And later:

Researcher: Right okay. So you said you found out who your friends really were. Does that mean you stopped hanging out with some people?

Participant: Nah they stopped hanging out with us. All of a sudden you know it was 'come around to our place but don't bring the kids' or um they'd come around and they'd just be sitting here rolling their eyes all the time because like Daniel and Alex you know will interrupt and everything and they just didn't have patience for it. [From the father of two children with 'classic' autism.]

Enacted stigma was reported by all participants whose children's behaviour was regularly socially inappropriate. Parents attributed enacted stigma to a rejection of the medical construction of their children's behaviour deployed by parents in favour of an explanation which focused on parenting:

Researcher: So who did you, when it dawned on you that there was something different about him who did you tell? Do all of your friends and family know?

Participant: All of my friends know. I lost a lot of friends because they were very unsupportive of my efforts to deal with his behaviour and they didn't necessarily see my explanation of his behaviour as being accurate. I've got new friends and I'm very up front with people because it's a huge part of my life. They need to know that and I'm not going to waste any of my time with them if they're not.

Researcher: How do you mean people were unsupportive?

Participant: 'You're being a bad mother. He's behaving like that because you don't discipline him. If you did it this way you wouldn't have problems.' That kind of stuff...you know, it doesn't help.

This example illustrates the importance of the autistic label. As points out, the socially inappropriate behaviour and otherwise normal appearance of children diagnosed with ASD can make the disorder especially stigmatising for parents despite the prevalence of biogenetic explanations for the disorder in professional discourse. The normal physical appearance of diagnosed children means that parents must intentionally deploy a medical construction of their child's socially inappropriate behaviour in order to avoid being stigmatised. If the medical explanation for their child's behaviour is not accepted by others they are treated as bad parents, a stigmatised subject position.

Strategic reconstructions of normality

Participants in the present study joined the support group from which the sample was drawn in response to a need for advice and support, as well as enacted stigma. Through the support group, participants come into contact with other parents of children diagnosed with ASD, as well as professionals such as psychologists and pediatricians.

In describing their ties with these institutions, and articulating their constructions of themselves and their children, participants position themselves in what some described as the 'world of autism': the interpersonal ties which the support group leads to provide emotional support to parents, creating a space in which parents come into contact with autistic discourses, drawn from medicine and psychology, that construct them as unspoiled subjects. Chamak (2008) shows that support groups can become politically active in promoting biogenetic explanations of ASD in contexts where explanations for ASD continue to stigmatise parents. Similar to the process reported by Gubrium and Holstein (1993), this Australian support group institutionalises discursive constructions of family life that give new meaning to participants' families. In positioning themselves in a 'world of autism', parents make an effort to research the nature of ASD in an effort to know as much about the disorder as possible. This knowledge provides them with the power to resist stigmatisation, since as will be shown, parents cite medical discourses in articulating unspoiled subject positions.

It is not the contention of this paper that the autistic label has no pejorative implications for children or parents. The diagnosis is emancipatory in the sense that it constructs parents as unspoiled, although not 'normal'. Aware of the pejorative implications which a diagnosis has for their children, parents' notions of normality are reconstructed in such a way as to cite medical discourses whilst avoiding the negative implications this has for their child's social identity.

Whilst this process of strategic reconstruction was negotiated differently by all participants, some common strategies can be identified. Parents were at pains to construct the social and cognitive difficulties of their children medically. Nevertheless, this was not a straightforward process. Parents recognised that there were certain pejorative implications of the autistic label. Therefore, resistance to stigma placed them in an ambiguous position with regard to medical constructions of themselves and their children. Parents did not merely accept straightforward medical definitions of their children. Rather, in a process similar to that described by and Rehm and Bradley (2005) parents constructed their children medically when accounting for their behavioural problems, but asserted their individuality and intrinsic human worth at other times, rejecting pejorative implications of the autistic label in favour of other constructions drawn from the lifeworld. A clear example of this is that of the following couple, parents of a young child with classic autism who regularly exhibited some socially inappropriate behaviour and had almost no language, as well as having one other disorder mildly influencing his physical development.

Early in a discussion about their perception of community attitudes towards ASD, this mother and father describe the way they presented their child to the rest of his school upon enrolment:

Mother: We ended up writing a letter from Terry just about who he was. And first and foremost he was a child and not you know

Father:  An autism.

Mother: Not autism. And just explained a few of the little things and the little quirks that he has and maybe if you get to know him you know, keep trying to interact because one day he'll turn around and play. Most mums now give me the kind smile and 'okay, stay right away from you'. And there's about three that've actually gone 'oh tell me more about him ...'

Concerned about the environment their child was to enter, these parents wrote a letter outlining that their child had ASD, but also emphasising his individual characteristics. However, soon afterwards they go on to construct their child in purely medical terms when talking about problems he has had:

Mother: And I guess...with that genetic situation there is, we know it's called a marker chromosome and it's on chromosome 15. And what's actually happened is that it's an extra bit and that extra bit has actually broken off. And because they have no other cases to compare him to then there is no label as such. So he doesn't have, he didn't have that for so long and this was like we have to wait and see.

Despite this purely biological discourse, these parents assert the individuality and uniqueness of their child. Then, in further describing the way they explain their child to visitors, they reject the autistic label, preferring instead to describe their child as a 'special needs child'. They considered this a more ambiguous construct, a kinder, less pejorative label that encouraged visitors to be more forgiving of social transgressions, whilst avoiding the negative implications they felt were associated with the specific label of autism:

Researcher: So why a special needs child rather than autistic? Do you think there are negative attitudes towards autistic people in the community?

Father:  Yes absolutely.

And later:

Mother: I think that the terminology of special needs child is far more acceptable than whether it be autism or whether it be cerebral palsy or you know anything like that. As soon as you say 'he's a special needs child' people are just more accepting.

Avoiding the specific implications of ASD, 'special needs child' is a more flexible construct for parents to deploy when presenting their family to others.

Many parents used the nature of ASD as a 'spectrum' to affirm the individuality of their child. Generally, the 'place on the spectrum' that parents constructed their children as occupying was one that explained the child's inappropriate behaviours without placing limits on what their children could achieve in their lives, and emphasised their child's individuality. The concept of the autism spectrum allows parents to deploy legitimate medical discourses to affirm the individuality of children. Contact with the world of autism, and especially the support group, was vital to this process:

Participant: What I've done by going to all those workshops and reading about the disabilities and, and normal managing, some of the courses were called 'managing normal behaviours' which means that temper tantrums um you know pooing their pants, they're all normal behaviours. And some children manage to get over it by the time they're five and some take until they're 11 but they are normal behaviours and some are emotional responses and it's just observing. Sometimes just making mental notes of when these things happen and what happened, what did they eat that day, what did they eat the day before, what things happened that might have caused this, if you want to look for a physical reaction the pooing, what's happened that this has sort of happened. So it is very trial and error, you have to deal with your own situation and knowing that they're all normal behaviours.

Researcher: So it helps to know what's normal in the context of ASD in terms of...

Participant: Um yes. Yes. It does help to know. It helps to know um what is normal, how to look in within yourself. [From a mother discussing her experience with workshops run by support groups.]

In the present context it is clear that for parents, the medical definition of ASD is ambiguous, allowing considerable creative space for parents to articulate unspoiled selves ( cf.). The medical label is deployed in creative ways when constructing the social identity of their child and their family, this reconstruction reflecting parents' own subjectivity. Their subject position, and the social identity they deploy in face‐to‐face interaction, is not 'autistic by association' in the way one would expect, following the description of courtesy stigma provided by Goffman (1964). Rather, stigmatisation is resisted through a complex discursive process designed to result in an unspoiled subject position for themselves and a manageable, unstigmatised identity for their children:

Participant: Their okay and our okay are two very different things. And Terry's okay is a different thing again. Yes he will be okay, but he will never be like any other child in the world. He's on the spectrum and so therefore he's different even to other children on the spectrum. Um but he will be okay. That's normal. But he mightn't be their okay. He'll be his okay and our okay. But he mightn't necessarily be their okay. [When describing family attitudes towards his child's development.]

Reports of felt stigma were very rare, and all parents who reported any felt stigma asserted a recognition that it was unjustified, and claimed that they rarely had such feelings. By positioning themselves through the 'world of autism' construct and the discourses on parenting, social behaviour and normality institutionalised within the support group and professional discourse, parents are able to articulate an unspoiled subjectivity through a reconstruction of ideas of difference and normality. Parents cite medical discourse to articulate unspoiled subject positions, and continue to do so in response to enacted stigma. Support groups are a vital space for this reconstruction of normality to take place. As has been suggested above, however, processes of stigmatisation are influenced by the extent to which medical constructions of their children are accepted by others, a process which is well illustrated by parents' accounts of their experiences in public places and schools.

The influence of setting: public situations and institutions

As this paper has argued, the nature of ASD means that resistance to stigmatisation is contingent upon parents' capacity to deploy medical discourses constructing their children as sick and themselves as unspoiled. In face‐to‐face interaction, the result of these efforts is mediated by the setting in which interactions take place. Settings which limited the capacity to deploy unspoiling discourses resulted in enacted stigma.

Public situations

The nature of face‐to‐face interaction in public makes deploying medical constructions of their child's behaviour difficult for parents. As this paper has argued, without a medical definition of their children, parents are once again positioned as 'bad parents with naughty children'. Therefore, most parents reported significant enacted stigma in public situations. Many parents restricted their daily activities to avoid public situations with their children, which whilst avoiding enacted stigma, contributes to the position of autism families as separate from the wider community.

Similar to , enacted stigma in public consisted of 'looks' or 'glares', as well as unsought‐for advice about parenting, the most common of which was the advice that they should smack their children. The importance of medical discourses in resisting stigma is illustrated by the fact that the support group through which participants were recruited produces and distributes cards for use in public situations. The purpose of these cards is explicitly to avoid stigma by deploying medical constructions of children. On the front are the words 'Please don't let my child's behaviour concern or upset you...' and inside is printed 'My child has Autism Spectrum Disorder...' followed by a description of ASD as 'a neurological disorder that causes problems with communication, behaviour and learning'. Some parents reported the occasional desire to put a shirt or a sign on their child that said 'I have autism', in order to make public situations less stigmatising.

Enacted stigma in public was commonly reported as being caused by the difficulty participants had in presenting their children, who look normal but behave inappropriately, as 'on the spectrum' to the general public. Passing is impossible due to the nature of their child's behaviour, and their status as 'bad parents' gives them very little power to define social situations. Their only legitimate strategy, deploying the medical label, is made problematic by the anonymity of face‐to‐face encounters in public. However, parents' self perceptions were generally unchanged by public reactions to their children. While many reported embarrassment resulting from public enacted stigma, they still constructed their children medically: felt stigma is fleeting and extremely rare.

Institutions

The process of stigmatisation as it occurs in institutional settings is an effective illustration of the way structural power influences stigma and social identity. Institutions, most notably schools, are settings in which parents are obliged to engage in strategic measures in order to have their children defined as ill, and hence to avoid stigma. Whether or not an encounter within an institution was stigmatising depended on the extent to which these discursive strategies were resisted by those in power.

The situation most commonly reported as stigmatising was that in which schools responded to behavioural problems in ways that were contrary to the advice of professionals in the world of autism, due to their refusal to fully accept the medicalisation of the child's behaviour. Parents attributed the resulting lack of success in managing the behaviour to the inappropriate nature of the strategies used, and reported stigmatisation from school authorities, who blamed parents for this lack of success:

Participant: The deputy principal was...hideous. She'd call me up, and she would call me to the school and have me in the office with Andrew sitting there and being a sook or whatever, grumping, pulling things off the wall and she'd be going 'Now...this just isn't good enough, he's done this and this and we're going to have to punish him' with her best school mum voice on. And I would feel this small, going 'but, but' and I felt like I was constantly making excuses for him, and she'd say 'well we know he's got a diagnosis but, can't you just talk to him...' I mean yes I can talk to him until I'm blue in the face but it's not going to help. They just had no concept whatsoever of what they were dealing with.

And later:

Participant: ...Seriously I'd go in there to pick him up from school and I'd come away feeling like I was on detention. Because she would just belittle everything he did and make it sound like I should have been able to talk him out of it or something. But she had absolutely no idea whatsoever.

The experience of two other participants, a mother and father, also illustrates this process. While their son was in an autism unit, they were dissatisfied with the quality of education he was receiving. The executive teacher at the school was experienced in education for disabled children, but these participants felt that her failure to understand or accept the implications of autism led to their parenting being questioned nevertheless:

Participant 1: ...one of them in particular her favourite comment is 'we've got to lift the autism off the boy'.

Participant 2: And she is an executive teacher supposedly with long experience with children with disabilities.

And later:

Participant 1: I mean this particular person that we're both thinking of has mentioned probably over the last 12 months 'oh you need to let us know if there's anything happening at home or if there's any stresses from home that he's bringing to school' as if to say well it's only happening at school because it's happening at home. And we keep saying 'well it's not happening at home'. Yes he's showing signs of stress like this sort of anger talk [their son is screaming in the background] um and those are happening but I said that sort of stuff is more a result of what's happening at school rather than the other way around. But I think because she can see without admitting that there is issues at school, doesn't want to acknowledge them because then that puts them in the wrong and they have to fix it. No she'd much prefer to put the blame on to us.

The language used by the executive teacher above ('lift the autism off the boy') suggests that this teacher accepted that this child had a diagnosis, but considered it somehow ontologically peculiar to the child, refusing to honour an identity defined by ASD. Since this teacher had had the family assessed by psychologists, this may indicate the continued currency of psychoanalytic constructions of ASD. Alternately, and in keeping with the views of this participant, this teacher's actions may be viewed as a discursive strategy designed to reject an entirely autistic identity, and therefore validate behavioural intervention methods being used by the school. Regardless of which is the case, this example illustrates that the history and continued ambiguity of medical knowledge around ASD means that this power/knowledge can operate in different ways depending on the power relationships involved.

These parents resisted the idea that autism was somehow peculiar to their child. In avoiding stigma in the face of resistance to medical constructions of their child's behaviour, they asserted many times their child's autistic master status ( Hughes 1945). In their meetings with their child's school, parents used the services of psychologists, who came to meetings with school authorities after having observed their parenting style at home. This strategy was used by parents to validate the quality of their parenting, enlisting the professional power of psychology to promote an autistic social identity for their child. Furthermore, felt stigma remained successfully resisted despite enacted stigma in institutional settings.

Conclusion

speculates that whilst biogenetic explanations for disorders have the potential to reduce stigmatisation of parents, it is not clear whether this will be the case for parents of children diagnosed with ASD. The central finding of this research is that these medical discourses are strategically deployed by parents of children diagnosed with ASD to resist stigmatisation. Parents resist felt stigma by articulating subjectivities discursively positioned in a 'world of autism', a discursive setting which constructs parents as unspoiled. Enabled by the ambiguity intrinsic to the medical construction of ASD as a spectrum, parents engage in a strategic reconstruction of normality, creatively citing medical knowledge to articulate an unspoiled subject position ( cf.). This creative process means that felt stigma in this sample was extremely rare despite the loss of friendships through enacted stigma. As a caveat, it must be noted that since this (relatively small) sample was entirely drawn from parents active in support group activities, this close involvement with institutionalised knowledge is likely to have influenced the prevalence of this kind of discursive strategy in this research.

Stigma management in public situations was made difficult by the anonymous nature of face‐to‐face interaction in public, with parents experiencing enacted stigma due to the difficulty of deploying medical constructions of their children's deviance. In schools, medical constructions of deviance were sometimes met with resistance by those in positions of authority, resulting in the need for resistance aided by legitimate professional power in the form of psychologists. This active disclosure of otherness runs contrary to Goffman's (1964) assertion that the stigmatised manage information in order to prevent others from discovering their status, illustrating the agency‐enabling character of knowledge for this group.

Parents of children diagnosed with ASD successfully negotiate and perform an unspoiled subject position. This is a subject position that can not be described as stigmatised, since no parent reported feeling inferior or devalued. This is a subjectivity that is constructed as a different kind of normality, the performance of which parents value (cf , Rehm and Bradley 2005, Landsman 2003). However, it is important to note that this articulation and performance is contingent upon an acceptance of their child's ontological difference as an autistic subject. Only through citation and creative iteration of these discourses can this subject position be articulated. This ongoing performance therefore reproduces the power of the discourses which create their child's difference. Whilst stigmatisation is resisted, this strategy prevents subversion of the discursive construction of the autistic subject as other. Medical knowledge enables resistance to stigmatisation at the cost of othering the child diagnosed.

Informed by these findings, the concept of felt stigma describes the experience of an ontologically inferior subject position, resistance to which requires a structural (discursive) context which constructs the subject as unspoiled. Enacted stigma in face‐to‐face encounters is enabled by the discursive construction of identity as it is expressed through power relations in a micro‐social setting. Resistance to this political act requires others to accept unspoiled definitions of the social actor, the legitimate range of which is discursively produced. Furthermore, it must be noted that in the poststructural account of agency as produced by temporality, in the space between discourse and iterative performativity ( Butler 1997), it is clear that no subject position is ever fully actualised. Subjectivity is a process, performativity a constant negotiation of the discourses which constitute the subject. Indeed, it is the impossibility of fully actualising any subject position that reveals stigmatisation as a constantly contingent social process and sensitises empirical research to the importance of resistance. Whilst acknowledging this, the characterisation of certain subject positions as spoiled or unspoiled allows stigma research to maintain a focus on the social control element of stigmatisation and the painful lived experience of being stigmatised. The tension between the somewhat static characterisation of a subject position as spoiled and the constantly contingent nature of subjectivity as a process is useful to enliven stigma research, and does not reduce the usefulness of stigma as a concept.

Acknowledgements

My thanks go to Kevin White for his support during the time this research was being conducted, Johanna Wyn for suggestions on early drafts of this paper, and the anonymous referees of Sociology of Health and Illness for their valuable comments.

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Exploring stigma: medical knowledge and the stigmatisation of parents of children diagnosed with autism spectrum disorder

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Address for correspondence: David Farrugia, Australian Youth Research Centre, The University of Melbourne, Parkville, Victoria 3010, Australia e‐mail: d.farrugia2@pgrad.unimelb.edu.au This paper analyses 12 parent interviews to investigate the stigmatisation of parents of children diagnosed with an autism spectrum disorder.

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Scott L. J. Jackson

Logan Hart

Fred R. Volkmar

Thirty years ago it was rare for a student with autism spectrum disorder (ASD) to enter college. However, over the past decades with the increased awareness and detection of ASD in children with average or above average intellectual abilities (Christensen et al. ) and with the improved provisions of effective, evidence-based treatments (Reichow and Volkmar ) many students with ASD are now seeking enrollment in college (Volkmar et al. ). In the USA alone there are roughly 550,000 children with ASD who will be transitioning into adulthood over the next decade (Buescher et al. ), and it is expected that approximately 45% of these emerging adults will enroll in a university, college, or technical/vocational school in the coming years (Newman et al. ).

This is a promising trend, as completion of a post-secondary degree is a significant predictor of positive adult outcomes in ASD populations, impacting the likelihood that an individual will be able to find employment, obtain financial independence, and live independently. However, students with ASD have a lower likelihood of completing their degree (38.8%) compared to students from the general population (52.4%) and those with disabilities in general (40.7%; Newman et al. ).

College presents new challenges for these students as well as for college support personnel. There are major changes in both the way education is provided and in the nature and availability of support services (Reichow and Volkmar ). While difficulties adapting to the increased academic challenges of post-secondary education may contribute to the discrepancy in rate of degree completion, non-academic factors are likely to have a greater impact. For students with ASD these factors include disorder-related social, communicative, sensory, routine adherence, and executive functioning impairments, and the impact of these impairments on the students' ability to adapt to the changing environment, social demands, fluctuating schedules, and management of daily living responsibilities associated with collegiate life (Volkmar et al. ).

Findings from a systematic review of the literature describing the experiences of college students with ASD (Gelbar et al. ) have lent support to the notion that non-academic issues are underlying many of the difficulties experienced by this student population. Based on 20 articles, with a cumulative sample of 69 current and former college students with ASD, the most commonly reported experiences were related to struggles with anxiety, loneliness, and depression (respectively). Since the release of the Gelbar et al. () review, approximately ten additional articles on the topic of the needs and/or experiences of post-secondary students with ASD have been published. While this uptick in interest is promising, the general dearth of literature on this topic significantly limits both our understanding of the challenges impacting the ability of many students with ASD from achieving their full potential in post-secondary academic settings, and our insight into how these challenges can be addressed. This lack of information also poses challenges for college support personnel who themselves must adapt to the new challenges students with ASD present in the college environment.

This Special Issue of the Journal of Autism and Developmental Disorders addresses some of these issues. It includes articles covering the topics of self-reported experiences from college students with ASD, explorations of bullying prevalence and underlying issues, parental insight into ways in which we can support students with ASD to give them the best opportunity for success in post-secondary academic settings, and finally a review of evidence-based programs for college students with ASD and reports on emerging support options that are currently being evaluated in the field. While not an exhaustive compilation of the issues concerning college students with ASD, these articles will make strong additions to the current literature-base on this subject, and we hope that they will inspire others to consider incorporating research on this topic into their own work.

The first two articles to appear in this Special Issue are findings from online surveys distributed to college students with ASD primarily from the USA (Jackson et al. ) and Australia (Anderson et al. ). Surveying 104 college students with ASD in combination, the publication of these studies alone represent a marked increase in the amount of first-hand insight on this topic available in the extant literature. Although the samples come from different parts the world their findings are very similar. Anderson and colleagues find that most of the self-reported strengths of the participants in their study are academically oriented (e.g. creative thinking, detail orientation, strong memory), meanwhile Jackson and colleagues find that only a minority of their participants (21.4%) reported feeling uncomfortable with their academic workloads. Both studies also mirrored previous findings of frequent struggles with mental health issues. The majority of college students with ASD from the Anderson et al. study reported anxiety (90.2%), depression (70.7%) and loneliness (61%) to be 'moderate' to 'big' concerns of theirs, while the participants in the Jackson et al. study averaged 'severe' to 'extremely severe' symptom expression of depression, anxiety and stress (as reported by the Depression Anxiety and Stress Scale) and 75% of this sample reported feeling isolated, left out, or lacking companionship 'some of the time' to 'often'. Perhaps the most concerning finding between these two studies was the frequency with which lifetime suicidal behaviors (74.6%) were reported by the participants from the Jackson et al. study, and the fact that 17.9% of their sample reported that it was 'likely' or 'very likely' that they were going to attempt suicide in the future.

The next article focuses on an important clinical problem-the experiences of bullying for college students with ASD. Bullying has been a well-documented issue for youth with ASD, even as compared to students with other disabilities (e.g. Sreckovic et al. ), but as with most things related to the experiences of college students with ASD there is a paucity of information available on this issue. DeNigris et al. () compares the bullying experiences of 22 college students with ASD to 15 college students without ASD, and examines whether reduced cognitive empathy (and a so-called 'double empathy problem') is associated with increased risk of being bullied for students with ASD (DeNigris et al. ). In line with the prevalence of bullying experiences reported in the previous two articles (35.7 and 24.4%, respectively), they find that bullying in college was only experienced by 21% of the students with ASD from their study. While this prevalence rate was not found to be statistically significantly higher than the prevalence of bullying experiences from their non-ASD sample (7%), clearly more examinations of this topic in larger samples are needed. Additionally, as both student groups reported similar levels of cognitive empathy the authors were unable to produce any evidence to support the idea that a 'double empathy problem' was contributing to bullying experiences of college students with ASD.

The next several articles shift their focus to the accommodations and services provided for college students with ASD: where they are succeeding, what needs they are failing to meet for this unique student population, and what programs are in existence that have been evaluated specifically for their effectiveness for students with ASD. Sarret reports on first-hand experiences and recommendations for post-secondary accommodations and services in 66 adults with ASD (Sarrett ). Utilizing a combination of surveys and online focus groups, the participants from this study produced mixed feedback regarding their satisfaction with the services they utilized as post-secondary students. Roughly two-thirds of the participants who utilized services at school reported that they met their expectations. Meanwhile, for the remaining participants, dissatisfaction with accommodations were due to a seemingly primary focus on academics (failing to address social, sensory, and psychiatric needs), inconsistent implementation of services, and poor awareness of accommodation options by school faculty and staff. Providing recommendations for post-secondary institutions based on the feedback from the study participants, Sarrett suggests the inclusion of neurodiverse spaces, and mentorship programs to be offered alongside conventional accommodations to better address the needs of students with ASD.

The next two articles report on specific programs, including evaluations of their ability to improve collegiate outcomes for this population. Lucas and James () evaluate a specialist mentoring program that examines benefits for students with ASD as well as students with mental health conditions, and utilizes a mixed-methods methodology incorporating feedback from the mentors and the mentees (Lucas and James ). The inclusion of the mental health condition control group not only offers the opportunity to elucidate benefits that may be specific to the needs of students with ASD, but considering the high occurrence of mental health issues reported in the Jackson et al. () and Anderson et al. reports, a service that can cater to both of these conditions will have utility for the majority of college students with ASD. The results of their investigation supported the benefits of the specialist mentoring program for social and emotional development in their participants with ASD. Further, based on thematic analyses they suggest that the quality and personalization of the relationship between the mentor and mentee was of critical importance in predicting the impact of the program on the mentored student. The utility of mentorship programs is further addressed in a letter to the editor included in this issue (Płatos and Wojaczek ), which recommends the expansion of peer-mediated interventions into older ASD populations (such as college students and high school students preparing for the transition to college).

The second program evaluation article included in this Special Issue describes a writing improvement program (Jackson et al. ). Designed to provide instruction following the Self-Regulated Strategy Development model, the efficacy of this ten-session writing improvement program was examined on three students with ASD who had previously struggled with a college writing course (previously receiving a failing grade, withdrawing due to struggles, or receiving a grade of "C") and incorporated a multiple baseline assessment to evaluate the program's success. All three of the participants were not only able to improve their writing abilities as assessed by a writing skill rubric, but these improvements remained during follow-up evaluations and each student significantly improved their performance in the college writing course they had previously struggled with (from failing to an "A−", from withdrawing to a "B+", and from a "C" to a "B").

The Special Issue concludes with a systematic review of evidence-based services for college students with ASD that have had explicit evaluations of their efficacy in the literature (similar to the two preceding articles), and an article describing parental perceptions of the challenges facing college students with ASD and their recommendations for services to address those challenges. For the systematic review (Kuder and Accardo ) eight studies evaluating programs for college students with ASD were identified and examined. Based on their review, the authors indicate that while there is a growing research-base for programs to meet the needs of students with ASD, the findings regarding their efficacy have been mixed and primarily based on limited sample sizes. In the final paper in this Issue Elias and White () review feedback from 52 parents of post-secondary students with ASD and 47 parents of post-secondary students with attention deficit hyperactivity disorder (ADHD). Elias and White note that the parent-reported challenges and recommended services for students with ASD were distinguishable from those with ADHD, with the parents of students with ASD endorsing unique challenges with emotion regulation, self-advocacy, and managing adaptive skills. As a result, the authors suggest distinct support options for students with ASD, with a particular emphasis on transition programs designed to improve social interaction and independent living skills. Additionally, they recommend that these programs are initiated before the student leaves for school, so that parents can still be involved in the process and the skills can be in place before the student steps foot on campus. Complementing these recommendations are the findings from a comparable article on parent-reported challenges for college students with ASD (Anderson and Butt ), and a preliminary examination of a college transition program (White et al. ) designed specifically for the needs of students with ASD (the Stepped Transition in Education Program for Students with ASD), both of which were published in the October 2017 issue of JADD.

In conclusion, it is clear that the available literature on the topic of the experiences and needs of college students with ASD is expanding as is the level of need for these students and their supporters. Our understanding of this topic is far from complete and further work is still needed in several areas: (1) additional large sample studies of first-hand experiences of students with ASD to increase generalizability of findings; (2) evaluations of programs designed to meet the specific needs of this population; (3) identification of evidence-based practices that can be used both in high school and college settings to facilitate the transition of students to college and improve their vocational success following college; and (4) examinations of insight from the professionals at post-secondary institutions who are working with these students on a day-to-day basis. Lastly, we need to find new and more effective ways of implementing outreach programs for students, parents, and teachers at high schools so areas of need can be addressed before they present as problems in the college setting.

We want to thank all of those who contributed to this Special Issue for their hard work and dedication to this topic, as well as all of those who participated in these studies for being willing to share their experiences and perspectives so that we may improve the outcomes of individuals with ASD embarking into post-secondary academic settings in the years to come.

References

1. Christensen, D. L., Baio, J., Braun, K. V. N., Bilder, D., Charles, J., Constantino, J. N., ... Lee, L. C. (2016). Prevalence and characteristics of autism spectrum disorder among children aged 8 years-Autism and Developmental Disabilities Monitoring Network, 11 sites, United States, 2012. MMWR Surveillance Summaries, 65(3), 1-23. https://doi.org/10.15585/mmwr.ss6503a1 .

2. Newman, L., Wagner, M., Knokey, A. M., Marder, C., Nagle, K., Shaver, D., & Wei, X. (2011). The post-high school outcomes of young adults with disabilities up to 8 years after high school: A report from the National Longitudinal Transition Study-2 (NLTS2). NCSER 2011-3005. National Center for Special Education Research.

3. Reichow, B., & Volkmar, F. R. (2011). Evidence-based practices in autism: Where we started. In: B. Reichow (Ed.) Evidence-based practices and treatments for children with autism (pp. 3-24). New York: Springer.

4. White, S. W., Elias, R., Capriola-Hall, N. N., Smith, I. C., Conner, C. M., Asselin, S. B., ... Mazefsky, C. A.(2017). Development of a college transition and support program for students with autism spectrum disorder. Journal of Autism and Developmental Disorders, 47(10), 3072-3078.

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Preface: Special Issue-College Experiences for Students with Autism Spectrum Disorder

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Scott L. J. Jackson Logan Hart Fred R. Volkmar Thirty years ago it was rare for a student with autism spectrum disorder (ASD) to enter college. However, over the past decades with the increased awareness and detection of ASD in children with average or above average intellectual abilities (Christensen et al.

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Journal of Autism and Developmental Disorders

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References

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5. Goffman, E. (1963). Stigma: Notes on the management of spoiled identity. New York: Simon and Schuster.

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8. Moreno, S., & O'Neal, C. (2008). Tips for teaching high-functioning people with autism. Indiana Resource Center for Autism, Autism Training Sourcebook, pp 105-106. Retrieved from http://www.iidc.indiana.edu/?pageId=437

9. Sanford, C., Newman, L., Wagner, M., Cameto, R., Knokey, A. M., & Shaver, D. (2011). The post- high school outcomes of young adults with disabilities up to 6 years after high school: Key findings from the National Longitudinal Transition Study- 2 (NLTS2). NCSER 2011- 3004. Washington, DC: National Center for Special Education Research, Institute of Education Sciences. Retrieved from http://files.eric.ed.gov/fulltext/ED524044.pdf

10. Shattuck, P. T., Steinberg, J., Yu, J., Wei, X., Cooper, B. P., Newman, L., & Roux, A. M. (2014). Disability identification and self-efficacy among college students on the autism spectrum. Autism Research and Treatment, Article ID 924182.

11. Silton, N. R., & Fogel, J. (2012). Enhancing positive behavioral intentions of typical children towards children with autism. Journal of Evidence-Based Psychotherapies, 12(2), 139-158.

12. Smith, A. (2009). The empathy imbalance hypothesis of autism: A theoretical approach to cognitive and emotional empathy in autistic development. The Psychological Record, 59, 489-510.

13. Wing, L. (1988). The continuum of autistic characteristics. In E. Schopler & G. B. Mesibov (Eds.), Diagnosis and assessment in autism (pp. 91-110). New York: Springer.

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Acknowledgments

We would like to thank all the people who participated in this training and contributed their insights to this paper, particularly Richard Nellis. We are grateful to Christopher Cruz-Cullari, Dennis Bublitz and Joanne D'Onofrio for feedback on initial drafts of the training. We thank Marsha Dupiton, Erica Golin and Claudia Olender for help with coding. This study was funded by CUNY Project R.E.A.C.H. (Resources and Education on Autism as CUNY's Hallmark) and the Far Fund.

Author information

Affiliations

1. Department of Psychology, College of Staten Island and The Graduate Center, CUNY, New York, NY, USA

Kristen Gillespie-Lynch

, Patricia J. Brooks

, Rita Obeid

& Christina Shane-Simpson

2. Department of Educational Studies, College of Staten Island, Staten Island, NY, USA

3. Department of Education, University of California, Los Angeles, Los Angeles, CA, USA

4. Department of Psychology, American University of Beirut, Beirut, Lebanon

5. Department of Psychology, College of Staten Island, CUNY, Staten Island, NY, USA

Corresponding author

Correspondence to Kristen Gillespie-Lynch.

Additional information

David Shane Smith-Independent Scholar, Department of Psychology, College of Staten Island, CUNY.

Appendices

Appendix 1: Social Distance Scale

Response choices included definitely unwilling (4), somewhat unwilling (3), somewhat willing (2), definitely willing (1).

1. (1)
How willing would you be to move next door to someone with autism?

2. (2)
How willing would you be to spend an evening socializing with someone with autism?

3. (3)
How willing would you be to start a collaborative project with someone with autism?

4. (4)
How willing would you be to make friends with a person with autism?

5. (5)
How willing would you be to have a person with autism marry into the family?

6. (6)
How willing would you be to marry or date a person with autism?

Appendix 2: Autism Awareness Scale

Response choices included strongly disagree (−2), disagree (−1), neither agree nor disagree (0), agree (1), strongly agree (2).

1. Autism is more frequently diagnosed in males than females.

2. Children with autism do not show attachments, even to parents/caregivers.

3. People with autism are deliberately uncooperative.

4. Children with autism can grow up to go to college and marry.

5. There is one intervention that works for all people with autism.

6. Autism can be diagnosed as early as 15 months of age.

7. With the proper treatment, most children diagnosed with autism eventually outgrow the disorder.

8. People with autism show affection.

9. Most people with autism have low intelligence.

10. Children with autism grow up to be adults with autism.

11. People with autism tend to be violent.

12. People with autism are generally disinterested in making friends.

13. People with autism have empathy.

Note: We added questions 11-13 to the scale.

Bolded items are reverse scored.

Appendix 3: Targeted Questions to Assess Specific Learning Objectives

About this article

Cite this article

Gillespie-Lynch, K., Brooks, P.J., Someki, F. et al. Changing College Students' Conceptions of Autism: An Online Training to Increase Knowledge and Decrease Stigma. J Autism Dev Disord 45, 2553-2566 (2015). https://doi.org/10.1007/s10803-015-2422-9
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Keywords

Stigma associated with autism

Knowledge of autism

Online training

College students

ASD

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Changing College Students' Conceptions of Autism: An Online Training to Increase Knowledge and Decrease Stigma

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College students with autism may be negatively impacted by lack of understanding about autism on college campuses. Thus, we developed an online training to improve knowledge and decrease stigma associated with autism among college students. Participants (N = 365) completed a pre-test, online training, and post-test. Women reported lower stigma towards autism than men.

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Do not pace back and forth when waiting in line for airport security. Airport personnel will become suspicious. Be aware of your hypersensitive visual sense and avoid looking too intently at the many and varied stimuli in airports. This can make other travelers anxious. When headed to the restroom, do not touch every seatback as you move through the airplane's aisle. Although you need this for vestibular balance, it invades the private space of passengers. When an international flight is canceled or delayed, employ your autism-based proclivity to systemize; tell yourself airports in every country work the same way and there are set procedures for dealing with change.

These rules are just some of the internal narratives I have developed enabling me to successfully travel around the world sharing my vision about autism and Asperger Syndrome - while being on the spectrum myself.

As a clinical assistant professor of special education at Adelphi University in New York - a university with an award-winning program, Bridges to Adelphi, for students on the spectrum - I have spoken at over 1,000 conferences on autism around the globe. My journey of 48 countries - and all but four of the states in the U.S. - has presented unique challenges, and extraordinary satisfaction, as well. In short, I am on a focused mission (which, by the way, is often the case for those of us with Asperger Syndrome).

My key message is simple, but surprising: To see autism as abilities-based, not deficit-based, which is an inversion of current thinking. Autism commonly brings what I consider to be almost superpowers, such as the ability to assimilate enormous amounts of information and data, a high degree of visual thinking, and the ability to quickly understand systems and mechanisms. In short, I do not travel to cure autism. I travel to celebrate its potential.

People on the autism spectrum have similar characteristics no matter their nationality or race. However, there are great differences in societal awareness, acceptance and appreciation of people on the autism spectrum throughout the world. For example, Finnish people with Asperger Syndrome are accepted into society without question. They are completing doctoral degrees and serving in influential fields like psychology. Not doing so because of Asperger Syndrome would be the same, in Finland, as being disqualified from an academic program because the applicant wears glasses.

While not every country is this welcoming and supportive of people with autism, I found many examples proving that celebrating the abilities, rather than focusing on the deficits, of people with autism benefits everyone.

When I was in Israel, for example, I found the kind of hypersensitive visual sense that people on the autism spectrum often have is greatly valued. Here, armed forces actively seek people with autism to serve as soldiers in Israel Defense Force's "Visual Intelligence Division," otherwise known as Unit 9900, which makes use of their extraordinary gifts for visual thinking and attention to detail to bolster security.

In Japan, however, I found that people with disabilities and other differences can have significant problems with acceptance into Japanese society. That said, there is a fascinating study and practice of inclusion happening just outside of Tokyo at the Musashino Higashi Gakuen, an elite private school of 2,500 students. One third of them have autism. Called Daily Life Therapy, their philosophy is to teach all students a balanced lifestyle of physical, emotional and intellectual development. To the casual observer, it is often impossible to discern which children are on the autism spectrum and which are not.

Throughout my global visits from Bhutan to Qatar, there are frequently pockets of best or near-best practice even in the most resource-poor areas, often initiated by parents of children on the autism spectrum. The biggest differentiators are awareness, knowledge and support to education and accommodating those with differences.

I've seen people with autism all over the globe valued for the unique set of talents and gifts they bring, from the classroom to the military. We need to continue to rethink autism as a set of valuable gifts and a unique way of seeing and interacting with the world, rather than a disability, to solve our world's most pressing problems.

Fortunately for me, as a sensory seeker, it's wheels up to my 49 th country next year. Turbulence might frighten the non-autistic person next to me, but the vestibular input from flight and turbulence is actually quite enjoyable to me.
Dr. Stephen Shore is a clinical assistant professor in the Ruth S. Ammon School of Education in Adelphi University of New York as well as an IBCCES Board Member. This article was originally published by Diverse.

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On Being a Professor with Autism, and Traveling the World to Destigmatize It - IBCCES

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Do not pace back and forth when waiting in line for airport security. Airport personnel will become suspicious. Be aware of your hypersensitive visual sense and avoid looking too intently at the many and varied stimuli in airports. This can make other travelers anxious.

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The definition of a "normal life" differs from person to person. When the discussion comes up in the context of autism, the term may simply serve as shorthand for a life that allows an individual to pursue an education, hold a job, manage their money, independently perform self-care tasks like cooking dinner, and so on.

If you are questioning your child with autism's future in relation to these aspects of life, that's completely natural-and important. In fact, gauging one's potential for these things is built into autism assessments, transition planning, applications to state and federal agencies, as well as discussions with guidance counselors and financial planners.

Asking yourself questions about your child's long-term abilities and goals prior to young adulthood will allow you to better prepare for their transition into independence.

While there's no one-size-fits-all plan for the path to adulthood, there are some general steps you can take with (and for) your child to set the foundation for a positive future.

Transition Planning

This will allow you to use your child's Individualized Education Plan (IEP) to set goals for every aspect of adult life-including vocational training, postsecondary education, employment, and independent living-and ensure your child's school district helps her prepare for and achieve those goals, as appropriate.﻿﻿

By starting early, you can also make sure that your child receives the proper assessments on her existing skills, strengths, and needs. This may include the following evaluations:

Vocational testing (aptitudes and interests)

Educational testing (functional use of spoken and written language, as well as math)

Community-based skills assessment (functioning independently in the community, including accessing transportation, shopping, finding appropriate help when needed)

Adaptive living skills assessment (daily living skills such as grooming, dressing, cooking, cleaning, telling time, etc.)

If college is part of your child's future, you'll need to make sure she gets her high school diploma or a general education diploma (GED). An IEP diploma is not recognized by institutions of higher education.

You'll also need to arrange for your child to take the ACT, SAT, and SAT subject tests, and prepare for any extra support that's needed in preparation for them. In addition, some colleges may require IQ or achievement test scores for your child to receive any accommodations under section 504 of the Vocational Rehabilitation Act.

When prepping for postsecondary education, Autism Speaks offers the following helpful hints:﻿﻿

Consider dual enrollments, which allows you to take college courses while still in high school.

Reach out to local autism organizations to find a list of colleges that offer support for autistic students.

Explore the different options, including vocational school, community or junior college, technical institutes, state schools or liberal arts schools, and online courses.

Ask the school to help connect you to other students with autism and their families.

Visit any potential schools and meet with the college Disability Services Office (DSO) to find out what type of documentation is required, as well as how accommodations differ from those in high school.

Employment

Finding a regular, solid paying job is tough for the best of us, and even more so for people with autism. Luckily, more corporations and industries have begun to recognize the value of recruiting and hiring adults with disabilities-Ernst and Young, Freddie Mac, Microsoft, Rising Tide, SAP, Walgreens, to name a few.

There's still a long way to go, however, and job candidates with autism typically need to undergo more stringent tests and evaluations than most employees. They'll also need extra support to deal with deficits that can be serious obstacles to employment, including a lack of communication skills, difficulty handling criticism, inflexibility, social anxiety, sensory challenges, and unwillingness to collaborate.

If you start early, you can work with your child's school counselor or agency to determine the best career for your child based on vocation tests, LifeMapping, and aptitude tests.﻿﻿

Knowing this information ahead of time will allow you to plan for training, internships, and vocational opportunities.

Living Arrangements

Planning for and creating an ideal living arrangement for your child with autism is a complex and time-consuming process, so again, you'll need to start thinking about it early. This will also ensure that your child's educational program is crafted to support these future living arrangements.

Start by asking yourself: Where would my child thrive? Is an urban or suburban environment better? What type of support does she need?

While options vary from state to state, living arrangements for adults with autism often include:

Living at home with family

Housing unit program/roommate

Dorm-style large facilities

Your local school district or state agency is a great place to start when looking for a state-run residential setting for adults with disabilities. You can also consult your local autism support groups or search for independent residential centers by state, region, or county.

Autism Speaks offers some things to consider when evaluating living arrangements for a loved one:﻿﻿

Health services coordination and medication administration

Behavioral and mental health support

Career support

Community integration

Social opportunities

Family support

Respite care

Independent Living Skills

Helping your child live a "normal" adult life will mean ensuring that she can get dressed, take a bus to work, go to the movies, meet new friends, etc. These skills can take time to develop. By having your child assessed properly, you can ensure that the following independent living skills are part of their education process:

Life skills (using the toilet, dressing, eating)

Functional skills (taking a bus, navigating the cafeteria, home repair, responding to a medical emergency)

Leisure or recreational skills (going the library or playing a group sport)

Employment or vocational skills (getting to work on time, interacting with coworkers, doing the job)

Social or interpersonal skills (greeting people appropriately, handling romantic relationships, interacting with a teacher, boss, or coworker)

Technology skills (using a computer or smartphone, purchasing an item online)

Resources and Support

While there are grants and financial resources for families living with autism, they are generally small and very competitive. It's helpful to learn about the supports and programs in your town for people with disabilities. This can include low-cost transportation, meal services, and volunteers willing to help with inclusion in arts programs, sports, or other activities.

Many families also turn to their local religious communities for emotional and spiritual support. Encouraging your child to volunteer in the community or stay socially connected to others with autism can also help set the foundation for a positive support system in the future.

A Word From Verywell

Adult life with autism looks different for everyone. Your child's challenges may seem limiting now and end up being so, in some ways, in the future. However, there are some people on the spectrum who are fully employed and happily partnered. Many have even become role models for other young adults who seek a full, independent life. These folks, like everyone else, didn't do it on their own. As a parent or caregiver, the best thing you can do is plan ahead and offer your love and support as your young adult with autism finds their way.

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Will My Autistic Child Lead a Normal Life?

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The definition of a "normal life" differs from person to person. When the discussion comes up in the context of autism, the term may simply serve as shorthand for a life that allows an individual to pursue an education, hold a job, manage their money, independently perform self-care tasks like cooking dinner, and so on.

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Vassar junior Zoe Gross knows her strengths and weaknesses all too well. So while she gets good grades, the 21-year-old is aware that she does things more slowly than most people, including getting dressed in the morning, transitioning between activities, and writing papers. It makes college an even greater challenge. "When you take into account that when I'm living on my own it is difficult for me just to keep myself washed, fed and in clean clothes," she says, "it means that I can't do the schoolwork as fast as the professors can assign it."

Gross is on the autism spectrum, and her struggles with life skills and executive function-the mental processes that involve things like planning, time management and multitasking-leave her feeling depressed and anxious. "I get sick a lot because my immune system is shot," she says. "I got strep and mono in one semester." Of course, this adds to her anxiety and trouble getting things done. "Every semester I am absolutely miserable by finals." After finally hitting a serious "rocky patch," as she puts it, Gross decided to take a break this semester.

Gross represents a wave of young people on the less affected end of the autism spectrum who head off to college after high school. Because these bright, if socially awkward, children have been doing well academically, it's a natural assumption they will do fine in college and beyond. Many parents do not anticipate the struggles their kids, without the family structure and the supports they were provided in school, will face.

Organization issues

Conventional wisdom holds that the biggest problems for those on the less severe end of the spectrum are social and communication issues. They might miss social cues and misunderstand what's expected of them. But disrupted executive function, usually associated with ADHD, is also common in people on the spectrum, says Dr. Ron J. Steingard, senior pediatric psychopharmacologist at the Child Mind Institute. "I think the burden is increased in autism," he says.

Which makes college, often the first foray into independent living, especially challenging. While Gross sees many students reveling in their freedom, she says the responsibility of staying organized and on track that goes with freedom is her most formidable obstacle. "I've talked to people who want to frame the issues I have as social because they see autism only as a social disability," she says. "But any social issues I might have at college pale in comparison."

Gross's difficulties are all too common, says Stephen Shore, a prominent advocate who is an assistant professor of special education at Adelphi University and author of several books on autism. "Managing the independent aspects of life as a college student such as living in a dorm or apartment, combined with scheduling homework, maintaining proper nutrition, etc., may overwhelm the individual's executive functioning capabilities," he says.

The challenges of independence

Asperger's does not mean "no challenges," confirms Lynne Soraya, who writes the "Asperger's Diary" for Psychology Today. "I was hit by a car-for the second time-when I was in college, at age 19. Life skills like learning how to effectively manage sensory inputs so that you can safely cross a street are still applicable for those of us deemed 'high functioning.'"

The day of the accident, Soraya says, she had gotten in an argument and was so overwhelmed by her emotions, along with the noise and crowds, that she experienced tunnel vision and didn't see the car coming until it was too late.

Add to the challenges of independence the withdrawal of the educational supports and services some of these kids have been receiving since they were as young as 2 years old; those supports vanish when they age out of children's services. They do not grow out of their autism, and they may very likely have other, accompanying problems, including anxiety and ADHD, that may make things that much harder.

Related: Sensory Processing FAQ

Invisible disabilities

Over the next five years, an estimated 200,000 teenagers diagnosed with autism spectrum disorder will be aging out of the services provided under the federal Individuals With Disabilities Act (IDEA). Of those, a significant number will be invisibly disabled teens and young adults like Gross. They may have attended mainstream schools, thanks to services and accommodations such as social skills groups, occupational therapy and additional time during test taking.

When these teens and young adults do age out, they will enter a world much harsher than the one they leave behind. "For those who have a disorder that's principally diagnosed in childhood and persists into adulthood, the adult universe is unprepared for them," says Dr. Steingard, noting that multiple agencies offering educational, social, medical and mental health services simply drop out when children move to the adult system. He notes another critical issue: the difficulty in finding clinicians who are comfortable treating adults with "childhood" disorders such as autism and ADHD.

While IDEA allows students to remain under the children's services umbrella until they're 21 or 22, depending on the state, many teens with less severe ASD will want to leave high school earlier, along with their typical classmates, despite the fact that they may lack the independent living and social/emotional skills that early adult life, including college, require. Besides, "public school tends to be difficult place for people on the autism spectrum," Shore says. "There are many situations where it's better that they enter adult school, where the bullies are gone and the classes are more interesting."

Transition planning

The aging-out process begins officially with transition planning, which takes place during the annual meeting for the child's federally mandated individual education program (IEP), starting as early as 14 and no later than 16, depending on the state. At that point, the focus shifts to any kind of post-high school education, training or experience, "from hygiene to banking to job training, driver's education, sex education, college admissions and more," writes Lisa Jo Rudy at Autism After 16, an excellent resource about transitioning, along with Autism Speaks' Transition Tool Kit. But Shore believes this planning should begin earlier-much earlier.

Related: Aging Out: When Kids With Autism Grow Up

"Transition starts as soon as you know someone has autism, even at two and a half," he says. "It doesn't mean you're determining your child's entire adult life, but you are trying to figure out his strengths so that they can be molded to lead to a fulfilling and productive life."

Shore realizes this is a tough concept for parents to get their arms around. "It can be overwhelming to find the time or energy to want to see that far into a future, especially when you're in the thick of things. Some will assume their kids will get into college and do fine, but the evidence shows that the hand is stacked against them and they need to prepare for it, the earlier the better." He suggests that parents find support groups to help them deal with all the issues their children's autism presents, both now and in the future.

Practice in self-advocacy

Traditionally, students start attending their IEP meetings when transition planning kicks in, but they may do so earlier. By the time they're teenagers, Shore says, students need to learn about negotiating for reasonable accommodations that will help them succeed."For instance," he says, "a child might share that the scratching of pencils during tests is distracting and they can't work," leading to a request for a separate space for testing.

"Some do research for their own accommodations," he adds. "They'll say, 'I don't need extra time, I need help in organizing time. This provides them with practice in self-advocacy, which is critical in college and everywhere else in adult life," when IEPs and parental advocacy end.

Rudy writes that transition plans must take into account whether the teen or young adult is really ready to leave home. While kids who are minimally affected don't necessarily need a group home, they lag in areas like social and executive functioning needed for self-sufficiency in the future. There are specialized summer programs cropping up aimed at easing the transition, but they can be expensive.

Those interested in pursuing college will find a great resource in Navigating College: A Handbook on Self Advocacy Written for Autistic Adults from Autistic Adults, compiled by The Autism Self Advocacy Network (ASAN). Written by autistic adults, the handbook offers practical advice on everything from self-advocacy to sensory issues. (Tip: Find a quiet dorm.) Shore advises students to make an appointment with the disabilities office and disclose that they're on the spectrum. While colleges don't require seeing an IEP, he suggests that students offer their paperwork so the school has a better idea of their needs. Meanwhile, GRASP, the Global and Regional Asperger Syndrome Partnership, offers a video that provides a good overview of issues and considerations for autistic students.

Tools for staying organized

Zoe Gross had some sessions with an educational therapist/planning specialist before college but they didn't really help, she says, because "I was reluctant to participate due to anxiety around planning." Once at Vassar, she did her best to compensate for her challenges, which she outlines in her chapter for the ASAN college handbook, titled "Better Living Through Prosthetic Brain Parts." She writes that her parents always helped her stay organized, right down to reminding her to eat dinner. But in college, "if I forget about an appointment, no one will remember it for me."

So Gross devised some practical tools to help her stay on track, including visual timers, planners and multiple alarm clocks. Because "there are so many small steps between waking up and walking out the door (getting up, showering, dressing, packing...)," she drew a flow chart that's included in the book titled "How to Leave the Room." It starts with the question: "Do you need a shower?"

"Those tricks only go so far," she says now.

"Autistic students need a way to spend more time in school without it being prohibitively expensive to our families, as college already is for so many," she says. "We need a way to work at a different pace and have that be all right. Ideally, many of us would benefit from having personal care aides at college, as a quadriplegic student might have. However, it's going to be hard to get supports like these put into place because they cost institutions money."

Becoming overwhelmed

Special-education advocate Carol Greenburg, who is also an editor at Thinking Person's Guide to Autism and East Coast regional director of the Autism Women's Network, knows firsthand what Gross is experiencing, though Greenburg's struggles in college were mainly due to her social and emotional delays. "Kids who are very verbal and whose autism is not obvious-like I was and am-are in danger of falling into a trap of taking on a little more than they can handle, and even a little bit can lead to real problems," she says. "We're dysregulated more easily than people with a non-autistic brain."

Autistic students becoming overwhelmed is "a huge problem," Greenburg says. "Either they do very well academically but are miserable because of deficits in the emotional area, or they crash and burn because the demands are so high, living away from home in a competitive college environment, where a lot is expected.

The problem for parents is that when your kids reach college age they don't want to hear from you and they don't realize how dysregulated they're becoming. They end up back home, having dropped out of college."

Keeping things manageable

Back home in Oakland, California, Gross is earning some credits at community college, which will allow her to take fewer courses when she heads back to Vassar without jeopardizing her financial aid. She feels this is the only way she can keep things manageable. She says because community college is more flexible, it might be a good starting point for autistic students and is also a good Plan B.

Greenburg agrees: "It's a great way to try out the academics of college while being home-based. I might have been better off in a setting that was a little closer to home and didn't take on quite as much beyond academics. Then I could have gradually moved to a setting where I'd have to live independently."

Does Gross have any advice for autistic students headed for college campuses? "College is designed for the use of neurotypical people," she says, "not for you. The guilt you feel when you have to ask for extensions or accommodations, when you turn in papers late, or when you have to take time off can be overwhelming. Try to remember that this isn't happening because you're a bad person-it's happening because colleges are not accessible enough for students like us. Hopefully one day we can change that, but for now, hang on, do your best and try to keep loving yourself, no matter what happens."
This is the second in a series on young adults with autism growing up and aging out. Part I discussed finding (and sometimes inventing) good supported living options. Part III explores working while on the spectrum.

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Going to College With Autism | Child Mind Institute

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Vassar junior Zoe Gross knows her strengths and weaknesses all too well. So while she gets good grades, the 21-year-old is aware that she does things more slowly than most people, including getting dressed in the morning, transitioning between activities, and writing papers. It makes college an even greater challenge.

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Social Support, Well-being, and Quality of Life Among Individuals on the Autism Spectrum

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Diverse theoretical perspectives1-3 and empirical findings4,5 reveal development as a complex interaction between nature and nurture, yet the diagnosis of autism spectrum disorder is used to classify neurodevelopmental disability mainly on the basis of individual-level social dysfunction.

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What happens to autistic people as we age is more of a mystery than it appears, because the definition of autism has changed so much in the lifetime of most Americans living today. Changes to diagnostic criteria (as defined in the DSM guide) in the 1990s resulted in thousands of young people being diagnosed. These diagnoses were often done in association with public schools, when kids exhibited academic or behavioral problems. The revised diagnostic criteria applied to adults too, but there was no comparable mechanism for adult diagnosis, so the surge in diagnoses was primarily among schoolchildren.

Many were bright and verbal, with social or behavioral challenges. They stood in sharp contrast to previously diagnosed autistics, who had more obvious verbal and cognitive disabilities. Autism had a fearsome reputation. Parents were frightened by the labels affixed to their children. After hearing that "there was no cure," prompt and aggressive intervention seemed to offer the best hope. That led a push for early identification that continues to this day, with autism now being diagnosed in toddlers and even infants.

Parents asked where autism came from. Answers were slow in coming, leading parents to form their own theories. Scientists recognized a strong genetic component to autism, but not all autism is inherited. Studies showed that some maternal illnesses increased the chances of an autistic child. Other studies found connections between environmental factors and autism. Families observed dramatic changes with the coming and going of fevers, and disease was suggested as a path into autism for some.

There seemed to be many possible causes for autistic behavior. That didn't sit well with the public, who wanted a single cause they could identify and cure. Nothing of the sort happened, and the uncertainty opened the door for talk of an "autism epidemic." Conspiracy theories ran rampant; a problem that persists to this day.

Many scientists and a growing number of openly autistic adults believed autism had always been here. From their perspective there was no epidemic, just a recognition of what had always been. In that view, older autistics were either diagnosed incorrectly, or not at all. That was buttressed by the accounts of autistics who received their autism diagnoses in middle age.

A large number of parents refused to accept that. "Show us the autistic adults," they said, but autistic adults were not identified in large numbers, either now or then. To some, that was evidence autism had not existed in its present form in the recent past. To others it was evidence of a massive failure of public health-the inability to identify autism in a whole generation, leading to poor life outcomes and considerable suffering.

With billions of dollars spent on autism research over the past decade the fate of adults remains an unanswered question. The British have made some headway. In 2011, a group led by Dr. Terry Brugha of the University of Leicester published a study that looked at autism prevalence among 7,274 heads of household in England. They found a similar autism prevalence in every age group, but the older people in the study were seldom diagnosed. Extensions to that original study suggested a prevalence of autism around 2% in men, or 1.1% for the overall population. That study suggests autism has not gotten more common, just better recognized.

The British researchers found a very high rate of autism among adults who had been diagnosed with severe learning disabilities in childhood. More than one-third of those individuals proved to be autistic. They also found high rates of autism in communal living settings, which house people with developmental disabilities of all sorts.

A California study compared the recent rise in autism diagnoses in that state with a fall in diagnoses of intellectual disability. That study suggests the diagnostic labels have shifted because the services for autism seem more helpful to the affected population. It's not likely that one condition has diminished and the other has grown more common.

These studies support the idea that autism prevalence has been relatively stable in modern times. They show that the application of modern screening tools leads to identification of autistic traits in people at a rate that is largely independent of birth date.

Given those findings, it's likely that somewhat more than 1% of all people are autistic. The most recent childhood prevalence data suggests the number is closer to 2%. That means there is a total autistic population of four to six million people in the United States alone-far more than are actually diagnosed or receiving services.

We know very little about the vast majority of that population, but what we do know is frightening. Studies from Kaiser Permanente and others have shown sharply increased mortality in diagnosed autistic adults. Kaiser found people diagnosed with autism die on average 16 years sooner than non-diagnosed peers. British studies have found institutionalized autistics have a life expectancy less that 50 years.

The autistic mortality data we have is mostly from diagnosed individuals born prior to 1965, which suggests their autism is at the more severe end of the spectrum. Other studies show that severity of autism correlates with severity of co-occurring medical conditions. Since those conditions are often responsible for death, we do not know the impact on less impacted autistics such as those identified in childhood in the current generation.

Other adult outcome data suggests high rates of unemployment or underemployment among older autistic people. But if most older autistics are not identified we may be misled by data subsets that measure only the more obviously impacted adult population. We have no way to know the outcomes of the rest.

There is casual talk about tech companies and accounting firms being full of undiagnosed autistic people. If that were true, the average outcome for autistic adults might be better than currently suggested. Corporate initiatives like Autism at Work are currently trying to build upon that idea. But we do not yet know if it's true, or just wishful thinking.

The limited adult outcome data we have is alarming enough that we should find out more. Unfortunately, it's not clear how we would do that, particularly in America. People are resistant to participating in lengthy medical surveys. Ascertainment of autism prevalence in adults would require extensive autism screening, with many people subjected to hours-long evaluations with ADOS or a similar tool.

In an informal survey on social media I received many similar responses to the idea:

Why should I spend half a day on an autism study? There's nothing wrong with me.

I'm not going to let you evaluate me and tell me there's something wrong. I'm fine.

If I let you evaluate me who knows how the data will be used against me. No way.

You have no right to ask me to do anything.

Outside the autism community the enthusiasm for a project like this appears to be near zero.

That is why we have detailed autism prevalence data in children but not in adults. Children have problems in school, or their parents have behavioral concerns, and they are evaluated at their parent's request. Parents have an incentive to evaluate their kids as that is the path to get them services they feel will help them succeed.

There is no comparable incentive for most adults to seek evaluation. Few adult services exist, and many adults are aware that any medical diagnoses may exclude them from employment opportunity, cause them to be denied licenses, and subject them to higher insurance rates and other forms of discrimination. Taken together those things form a strong disincentive for adults to seek evaluation-precisely the opposite situation presented by children.

It has been more than 20 years since the diagnostic surge prompted by the DSM IV redefinition of autism. The young people who were diagnosed in that 1990s and 2000s wave are now adults, and they are able to speak about their diagnoses and the interventions they received, which were more aggressive than those given to autistics in earlier generations. There is surprisingly little statistical data on this group, even as there is a great deal of anecdotal data in personal accounts from books, blogs, and social media.

The vast majority of accounts are harshly critical of childhood interventions, particularly ABA ( Applied Behavior Analysis) therapy. These adults decry the attempts to "normalize" their behavior and force them to be someone they are not. Some autistics compare modern autism therapies to discredited gay conversion therapy. Parents sometimes have a different view, believing therapy gave their kids essential skills to succeed.

With hundreds of millions spent on autism therapy in schools every year, it would behoove us to collect and listen to the words of autistic recipients. Yet that is difficult, because educational records are generally sealed, and researchers have no way to find those young adults. The online accounts are a tantalizing clue that society's interventions are not having the desired effect, but we lack the data to drive constructive change. ABA remains the primary autism therapy for kids despite a near-total absence of support from the alleged beneficiaries in the adult autistic community.

Today's autistic adults also question the role society plays in autistic mortality. Some say an absence of adult supports and services increases the likelihood autistics will die of disease or accident. They also point to the presumed isolation of many older autistics and suggest loneliness and depression reduce lifespan. Those are all reasonable arguments, but we lack statistical data to put them in context for policymakers.

In the past two years the Interagency Autism Coordinating Committee (the top-level autism committee for the US government) has shifted its focus from childhood and adolescence to lifespan issues. IACC members have called for more adult studies, and good data that Congress can use to make decisions to benefit the autism community. Until that happens, we will remain in the dark with respect to autism's impact on adults.

As long as autism carries a stigma, and people are ashamed or afraid of it, individuals will remain reluctant to step forward. That is a tragedy, both because we need the data to figure out how to best help our population, and because younger autistics need adult role models to look up to. Every group needs its older adults-the wise men and women-and autistic people are no exception.

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Life, Love, and Happiness for Autistic Adults

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What happens to autistic people as we age is more of a mystery than it appears, because the definition of autism has changed so much in the lifetime of most Americans living today. Changes to diagnostic criteria (as defined in the DSM guide) in the 1990s resulted in thousands of young people being diagnosed.

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For my topic I wanted to research the link between happiness and autism. The signs differ from person to person and I the sources I find will help to better understand what can be achieved to lead a happy and fulfilling life while living with autism spectrum disorder.

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When Susan Senator's son Max was racing toward the high school finish line, he joined the rest of his classmates for the usual rites of passage. He took the ACT and applied to good schools, landing at New York University's prestigious Tisch School of the Arts.

But things couldn't have been more different for Max's brother, Nat. Senator, a blogger, memoir writer and novelist, had to take into account the fact that her profoundly autistic older son, while very competent when it comes to self-help skills like showering and dressing, is also limited verbally, cannot handle money and still doesn't look both ways when crossing the street.

In other words, she knew he needed a 24-hour caregiver to be safe. But because the infrastructure and services aren't in place to create the type of living arrangement she wanted for Nat after he came of age, she joined the growing ranks of parents who are struggling to make short- and long-term provisions, often taking matters into their own hands.

Parents whose children were among the first wave diagnosed with autism-as well as those with younger children who see the future fast approaching-are confronting new challenges for their kids' adulthood. They're facing the harsh reality that when these children-200,000 of them over the next five years, according to one estimate -reach 21 or 22, depending on the state, all the educational supports and services they have been receiving under the federal Individuals With Disabilities Education Act (IDEA) will vanish.

This forced transition, called "aging out," pushes them into the woefully lacking system for disabled adults. And it's not just those with more severely disabled children who are worried. Parents whose children are termed "high-functioning," including those with an Asperger's diagnosis, have reason to be concerned that their kids-who may be dealing with things like ADHD, anxiety and sensory issues in addition to their social and communication delays -are not going to magically stop needing support after they reach a certain chronological age.

Liane Kupferberg Carter's autistic son Mickey turns 20 in July and, Carter, who has written much about the challenges of raising a child on the spectrum, admits to floundering."I don't know how to do this," she says. "When our son Jonathan was preparing to leave home for college, we had a whole shelf of books to guide our family." But there's no such book guiding Carter as she faces the next step with her verbal but cognitively challenged son, diagnosed with PDD-NOS. "We're making it up as we go," she says. Carter is certain of only one thing for Mickey, who likes to camp it up in a pair of Groucho Marx glasses: Due to his cognitive challenges and autism-related epilepsy, which is only partially controlled by medication, he will always need a supervised living situation.

Kristina Chew, whose 14-year-old son, Charlie, is on the more severe end of the spectrum, proposes that school should continue for the developmentally disabled until they are 25, which would take into account their delays and help families "staring at an abyss" when a child turns 21. "We have learned so much more about autism and the different developments, abilities and needs of autistic individuals in this past decade," she writes. "Let us try to use this knowledge to provide the best outcomes and the best lives for individuals with developmental disabilities at every age."

Senator says parents often begin panicking when their kids hit 14 and transition planning starts coming up. IDEA requires every state to begin this process for all students with an Individualized Education Program (IEP) by age 16, and some states require that school districts start the process as early as 14. During the annual IEP meeting, the focus shifts to more specific planning and goal-setting for the transition into young adulthood. Goals might include things like post-secondary education, vocational training, and independent living. Autism Speaks also provides a Transition Tool Kit, which offers guidance on everything from housing to Internet safety.

When it came to Nat, Senator created a shared living arrangement. It's like a group home, except that there's a live-in caregiver, which Nat qualifies for due to his level of disability, as opposed to rotating staff. "The idea is that it's just like home," Senator says. "He's got to do the groceries, clean and do the laundry," assisted by another part-time caregiver. Nat shares a house not far from his family with another young man with similar issues; that man's family owns the house and Nat rents from them.

The families secured donated furniture; the rest was paid for out of the two young men's budgets. Friends have been able to watch Nat's story unfold-complete with pictures-on Senator's Facebook page, including their shopping trip to Pier 1 for a pillow, a lamp and a rug. "Nat chose aquas, very wild stuff!" Senator says. "I had no idea!" Other parents have followed the project closely, seeing it as a possible template.

Nat works three days a week, sharing a job coach with two other young men. This coach, paid for by a state allocation, looks out for Nat at his job at CVS stocking coolers, making sure he understands what he is expected to do and stays on task. He's also about to start a trial run at a second job retrieving shopping carts at a grocery store. Currently Nat spends the other two days in DayHab, short for Day Habilitation Services, meant to help people with developmental disabilities improve or maintain their independent living skills.

"DayHab is often babysitting," Senator says, "table top activities, coloring, television or sheltered workshops, with very little out in the community, and there's a mixture of disabilities." This isn't true of Nat's program, she says; all of his "colleagues," as Senator terms them, are developmentally or intellectually delayed, possibly due to autism or Down syndrome.

Half of Nat's funding comes from the state, half from Medicaid. After he's given a budget for rent, living expenses, transportation and his job coach, the family works with Nat's service provider to "come up with ways to stretch the money," Senator says. The family pays for extras like a recent three-day outing with a social group to New Hampshire.

Barbara Fischkin also helped create a home for her son Dan. She first shared the story of his "miracle" group home -funded by the U.S. Department of Housing and Urban Development and run by the Nassau County Chapter of AHRC, a nonprofit group-two years ago. Then, she described it as a "newly renovated house on Long Island-a place I call the frat house. Actually, it is a beautiful and smartly designed home that could be a model for such endeavors nationwide. And the guys, who are in their 20s and 30s, are all at the age when leaving home and family and striking out on your own-even if you need lots of staff to help-is something one yearns to do."

Two years later, she reports that Dan, now 24, and his three housemates "become more like a family all the time. The guys look out for one another." Dan is still not verbal and has an aide most of the time "but is making great progress with independent typing."

Laura Shumaker is another parent who has successfully transitioned her autistic son, Matthew, whose childhood and adolescence she recounts in her memoir A Regular Guy: Growing Up With Autism. Matthew, now 25, lives in the Camphill Community in Santa Cruz, a supported living program Shumaker describes as "flexible and dynamic."

Matthew has been in a day program with social skills help, volunteer work and vocational training outside of Camphill, but is soon transitioning to two days' a week job training for garden/landscape work and three days' a week work with a job coach. "We are also building social activities into his program," Shumaker says. The program is funded through the nonprofit Regional Center of California, but given the state's budgetary problems, the family needs to make a sizable donation each year.

Meanwhile, some parents of young children are already researching options. Chew has put Charlie on a waiting list for state housing but is thinking the ideal immediate plan will involve a part-time job with a good day program.

She writes that her new "'hobby'/obsession" is finding something comparable to the county school for autistic children, which he loves and where he learns daily living and vocational skills. But this appears to be difficult if not impossible, she says. "I know the day that yellow bus does not pull up in front of our house will be a tough one."

Chew is well aware that funding shortages make her idea of extending special-needs services to 25 a pipe dream. But she also knows that the dearth of options leads many parents to keep these young people at home, often idle and lacking the structure, routine and calm those with ASD need to do their best.

Because Charlie had a lot of ABA (applied behavior analysis), Chew says, he has more skills than he might otherwise. She envisions her athletic son, aided by a job coach, folding towels, sorting recycling items, or working in a park, sweeping leaves. But she feels he might also have "major behaviors. As a 6-foot-tall adult who can't really read, I don't think he'd be happy in a room with a TV set doing arts and crafts." She worries he might end up in a setting like the "awful" after-school program she tried once: "It was a cinderblock building with old furniture. Half were kids, the other half really disabled adults who were there all day in a sheltered workshop."

She'd be all right with Charlie living at home until he finds housing he likes, ideally in a group home in a community with 24-hour staff and two or three other disabled adults. But she also really likes a couple of other models she's seen. One Texas couple plans to move out of their house and turn it into a group home for their child and other adults with disabilities. And in California, a group of families created a center in what she describes as a mini-condo complex. Two disabled adults live with one or two staff members; it's not quite in a neighborhood but they have their own apartment. "It's going to be created as you go," Chew says of Charlie's future living arrangement. "I'm relying a lot on my family. We're Chinese, and we have the ethic of taking care of the family."

Margrét Dagmar Ericsdóttir is another mother who wants to be sure that services are there for Keli, her 14-year-old nonverbal autistic son, when she's gone. Her high-profile Golden Hat Foundation, founded and directed by actress Kate Winslet, is the result of that simple wish. Of course Ericsdóttir's plans for a campus that will embrace nonverbal autistic children is a long way off; it's in the early planning stages and much fund-raising must be done.

But the sort of self-contained campuses proposed by the Golden Hat Foundation are themselves the subject of debate. Self-advocates like Ari Ne'eman, president and co-founder of the Autistic Self Advocacy Network (ASAN), feel strongly that smaller, inclusive settings are better for their adult autistic population. Ne'eman finds the prospect of a segregated campus very concerning. Commenting online about the Golden Hat plans, he cited "a wealth of research which shows that people have less safety, less choice and less opportunity to interact with the broader community in such settings."

With the number of children believed to have an autism spectrum disorder continuing to rise, it's clear that more living, working and support options are greatly needed for them once they lose their special schooling and services. What's also clear: Both adult self-advocates and parents must be part of the process, providing input as to what those options should be.

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Supportive Living for Young Adults With Autism - Child Mind Institute

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When Susan Senator's son Max was racing toward the high school finish line, he joined the rest of his classmates for the usual rites of passage. He took the ACT and applied to good schools, landing at New York University's prestigious Tisch School of the Arts.