Article on Quality of Life In ASD Adults
Neurodiversity, Quality of Life, and Autistic Adults: Shifting Research and Professional Focuses onto Real-Life Challenges Scott Michael Robertson Penn State University College of Information Sciences and Technology E-mail: firstname.lastname@example.org
Autism, Neurodiversity, Quality of life, Autistic Adults
This article examines challenges to the quality of life experienced by autistic adults.1 The author, who is an autistic researcher, first shares how a neurodiversity perspective offers an important alternative to the deficit model of autism. Whereas the deficit model portrays autistic people as ill, broken, and in need of fixing, the neurodiversity perspective portrays it as a form of human diversity with associated strengths and difficulties. The article's discussion then shifts to presenting Schalock's (2000) quality of life framework as a neurodiversity-compatible lens through which domains of quality of life can be viewed. The article analyzes in detail these core domains in relation to the lives of autistic adults. The author suggests that a collaborative approach between professionals/researchers and autistic adults is needed to develop meaningful solutions to these challenges, and he presents possibilities for collaboration.
Shifting Perspectives on Autism
A deficit model has largely dominated most professional and academic discourse on autism over the last century. This deficit model presents autistic people2 as individuals severely limited by a disordered neurology that causes major impairments in their cognition and ability to interact with the surrounding social and physical world. Under the deficit model, autistic people are portrayed as broken humans who are ill and require fixing to enable them to function normally in society. In contrast, non-autistic people are viewed as neurologically healthy and psychologically well.
This deficit-focused view of autistic people has largely ignored their cognitive strengths, their diverse way of being, and their gifts and talents. Many academic studies of autism present a limited or token discussion of the strengths, gifts, and talents of autistic people, or they leave them out entirely. Very few studies of autism present it as a form of human diversity akin to other societal forms of diversity (e.g. ethnicity, nationality, gender, etc.). Academic studies adopting the deficit model have sometimes even characterized relative strengths of autistic people as deficits. For example, De Martino, Harrison, Knafo, Bird, & Dolan (2008) emphasize how a greater reliance on rational thinking by autistic people leads to impaired social interaction, but they largely ignore the potential advantages of strengths in rational thinking. Despite these inherent flaws in the model, many professionals and academics have continued to accept the deficit model of autism as a given, without critically questioning its foundation and premises.
However, this situation may be changing as widespread acceptance of the deficit model has recently begun to erode and as neurodiversity, an alternative perspective, has gained traction in many fields and disciplines. A growing number of academic publications from several scholarly communities has examined autism and autistic people from the neurodiversity perspective (Biklen, Attfield, Bissonnette, Blackman, Burke, et al., 2005; Baker, 2006; Davidson, 2007; Savareese, 2007; Osteen, 2007; Robertson, 2007; Ne'eman, 2007; Fenton & Krahn, 2007; Glannon, 2007; Bumiller, 2008; Clarke & Ameron, 2008; Rocque, 2008; Robertson & Ne'eman, 2008; Broderick & Ne'eman, 2008; Wilson, 2008; Bound, 2008; Ortega, 2009; Pollack, 2009).
In contrast to the deficit model, the neurodiversity perspective describes the neurology and personhood of autistic people through the lens of human diversity. This understanding of neurological-developmental disability has been influenced by societal diversity in ethnicity, religion, gender, nationality, handedness, and sexual orientation.
Autistic people are viewed under the neurodiversity model as individuals who possess a blend of cognitive strengths and weaknesses in the following core domains:
- Language, Communication, and Social Interaction
- Sensory Processing (environmental input)
- Motor Skill Execution (environmental output)
- Goal-oriented and Reflexive Thinking, Planning, and Self-Regulation
Although relative strengths and difficulties in these core domains remain specific to the individual, numerous commonalities exist. For instance, many autistic people have key strengths that include detailed thinking, expansive long-term memories, a comfort with rules and guidelines, and an affinity for analyzing complex patterns in the social and physical worlds. Likewise, many autistic people have key difficulties in managing several simultaneous tasks, understanding social nuances, filtering competing sensory stimuli, and planning tasks of daily living. Professionals and academic researchers who adopt the neurodiversity perspective on autism often specifically emphasize the strengths, gifts, and talents of autistic people in an effort to establish a balance of focus in the academic and professional literature.
Another important facet of the neurodiversity perspective is its recognition that difficulties experienced by autistic people are always contextual. The neurodiversity perspective contends that living in a society designed for non-autistic people contributes to, and exacerbates, many of the daily living challenges that autistic people experience. This parallels the adversity encountered by the left-handed population decades ago when few tools were designed for left-handed persons and most attitudes favored right-handedness as inherently superior. Sensory demands, social ambiguities, and information complexities are among the barriers that the modern 21st century presents to autistic people.
Quality of Life and Autistic Adults
Quality of life oriented autism research has received relatively little attention when compared to the preponderance of causation oriented autism research. Searches of Google Scholar and several major academic databases (ex. Psychinfo, Proquest, JSTOR, etc.) yield more than 150,000 papers written about autism over the last several decades. The vast majority of these papers focus on the genetics of autism, physiology, and non-genetic (environmental) factors that may influence the trajectory of the neurological-developmental disability. Only a tiny fraction of scholarly articles about autism in the academic literature have examined real-life concerns presently impacting autistic adults, such as access to essential augmentative and alternative communication (AAC), social acceptance, and compatible employment options. Enhancing the quality of life of autistic people will necessitate that academic researchers shift their focus to the specific barriers they experience. This article will examine many of the major barriers to high quality of life.
Defining Quality of Life
Quality of life is a complex concept with many associated facets. It is also a concept that depends heavily on context and interpretation. Consequently, it is essential to adopt a working definition and framework.
Over the years, researchers, scholars, and professionals have widely disagreed on how to define quality of life with regard to people with disabilities. The World Health Organization's position paper on quality of life from 1995 (WHOQOL, 1995) defines it as: "Individuals' perception of their position in life in the context of the culture and value systems in which they live and in relation to their goals, expectations, standards, and concerns." Carr, Gibson, & Robinson (2001) describe quality of life as concerned with how "impairment limits a person's ability to fulfill a normal role." Countless other descriptions of the concept of quality of life abound in academic and professional discourse.
Researchers and professionals do generally agree, however, on the core domains that compromise quality of life. Schalock's (2000) comprehensive review of papers on quality of life from the last 30 years identifies eight core domains and their underlying indicators:
|Core Domains of Quality of Life||Indicators|
|Self-Determination||Autonomy, Choices, Decisions, Personal Control, Self-Direction, Personal Goals/Values|
|Social Inclusion||Acceptance, Status, Supports, Work Environment, Community Activities, Roles, Volunteer Activities, Residential Environment|
|Material Well-Being||Ownership, Financial, Security, Food, Employment, Possessions, Socio-economic Status, Shelter|
|Personal Development||Education, Skills, Fulfillment, Personal Competence, Purposeful Activity, Advancement|
|Emotional Well-Being||Spirituality, Happiness, Safety, Freedom from Stress, Self-concept, Contentment|
|Interpersonal Relations||Intimacy, Affection, Family, Interactions, Friendships, Support|
|Rights||Privacy, Voting, Access, Due Process, Ownership, Civic Responsibilities|
|Physical Well-Being||Health, Nutrition, Recreation, Mobility, Health Care, Health Insurance, Leisure, Activities of Daily Living|
Shalock's (2000) framework — and its predecessor's, Schalock (1994) — has been widely adopted by many studies that have investigated the quality of life of disability populations. Shalock (2000) has also been chosen as the lens for this paper due to parallels between neurodiversity and the framework. Like the neurodiversity model, Shalock (2000) outlines quality of life domains in a manner that fuses a social model of disability with an individual commitment to self-determination and self-advocacy. The framework also rejects a deficit model of disabilities in favor of a perspective that embraces strengths and difficulties, as well as human diversity.
Barriers to Quality of Life Experienced by Autistic Adults
Communication skills constitute an essential component of self-determination and self-advocacy for people with and without disabilities. Without adequate access to a working means of communication, it is not possible to sufficiently convey the individual wants, needs, and preferences that guide a person's self-direction and decision-making. Many autistic people face challenges with spoken language due to co-occurring dyspraxia (which impacts gross and fine motor functioning), generalized and social anxiety, and other reasons. These individuals could greatly benefit from having routine access to augmentative and alternative communication (AAC) systems, devices, and other technologies, such as letter boards, speech-generating devices, sign language, and picture/symbolic communication systems. Academic studies and professional case studies have shown widespread support for the advantages of AAC in augmenting self-determination, increasing opportunities for gainful employment, and enhancing general quality of life for people with other developmental and neurological disabilities, such as cerebral palsy and amyotrophic lateral sclerosis (e.g. Light, Stoltz, & McNaughton, 1996; Fried-Oken & Bersani, 2000; McNaughton, Light, & Groszyk, 2001; McNaughton, Light, & Arnold, 2002; Beukelman & Mirenda, 2005; Hamm & Mirenda, 2006; Hodge, 2007; Mirenda & Iacono, 2008). Autistic people often experience many of the same challenges as these and other disability populations. Thus, it would follow that AAC usage could substantially enhance the quality of life of many autistic people.
Yet, a large portion of non-speaking autistic people do not have adequate access to AAC systems, devices, or other technologies that are compatible with their individual strengths and difficulties. Purchasing AAC systems, devices, and other technologies and funding training for their usage may be cost prohibitive for many autistic people and their families. This situation is further compounded by the explicit exemption of AAC coverage from many insurance plans due to a widespread misconception that AAC has not been shown to enhance the functioning of people with disabilities. Autistic people also may be perceived as unable to benefit from AAC due to the primacy of speech as the predominant modality of communication in society, the gross underestimation of the cognitive and language abilities of non-speaking autistic people, and numerous other factors.
Similarly, the systematic, logical, and detailed-oriented nature of assistive technologies, such as computers and other information technologies, makes them a natural fit for many autistic people. Information technologies could benefit autistic people in helping them to plan and organize their lives, connect socially with other people, and participate in local communities — activities that often go hand-in-hand with self-determination. Yet, just as many autistic people do not have sufficient access to needed forms of AAC, they also may not have access to needed forms of assistive technologies, such as personal digital assistants (PDAs)/planners, smartphones, online communication tools, and aids for daily living.
Another major barrier to the achievement of self-determination for autistic people is a fundamental assumption held by many professionals that self-determination is not attainable or desirable for autistic people. This assumption is based on rigid belief systems throughout the disability service-delivery community about what constitutes self-determination for people with disabilities. There exists a widespread lack of understanding of the flexible and individualized nature of self-determination for people with disabilities and its relation to an individual's strengths, weaknesses, preferences, values, beliefs, and goals. Given appropriate support and encouragement, many autistic people and other people with disabilities could likely achieve a much higher degree of self-determination in their daily lives than they do currently. Reaching this point, however, necessitates transforming societal attitudes about self-determination.
Historical stigma and continuing myths and stereotypes about autism have stifled the social acceptance of autistic people and their full inclusion in community life. Broderick & Ne'eman (2008) and Robertson & Ne'eman (2008) describe how many demeaning and dehumanizing metaphors about autistic people have persisted despite considerable efforts by the autistic self-advocacy and allied community to counter them. These include portrayals of autism as a partial or whole loss of personhood, representations of autism as a retreat into an empty fortress, characterizations of autistic people as locked inside a shell, and presentations of autistic people as victims kidnapped and held hostage by their disability.
This unfriendly — and sometimes hostile — climate in which autistic people find themselves has made it very difficult for them to achieve a healthy self-esteem and to become comfortable participating in their local communities and social gatherings. A survey of 237 autistic adults conducted by Beardon & Edmonds (2007) in the United Kingdom found that 83 percent of autistic participants surveyed felt strongly or very strongly that many of the greatest challenges they faced in life resulted directly from lack of acceptance and understanding of their differences by other persons with whom they worked and interacted on a regular basis.
Yet, when professionals discuss the challenges experienced by autistic people and people with other disabilities, societal stigma and attitudinal barriers rarely top the list. Many professionals tend to focus their efforts on functional tasks at the expense of focusing on the social climate surrounding disability populations. They may not be trained to consider how social-cultural norms and perspectives create barriers in everyday life for people with disabilities.
Numerous academic studies have found that autistic adults often experience considerable challenges in securing and sustaining competitive employment (e.g. Mawhood, & Howlin, 1999; Nesbitt, 2000; Mullera, Schulerb, Burtona, & Yates, 2003; Howlin, Alcock, & Burkin, 2005; García-Villamisar & Hughes, 2007; Higgins, Koch, Boughfman, & Vierstra, 2008; Lawe, Brusilovskiy, Salzer, & Mandell, in 2009). These studies suggest that both underemployment and unemployment are likely much higher among autistic people than among the non-autistic population. (Underemployment is defined herein as an employment status where a person's job underutilizes their skills, talents, and educational background, whereas unemployment is defined as an employment status where a person does not have a job for an extended period of time.)
This present situation parallels a historical trend of much higher underemployment and unemployment among the larger community of people with disabilities. The statistical database at Cornell University's Rehabilitation Research and Training Center (Houtenville, 2009) indicates that the employment rate in the U.S. of men and women aged 18-64 with an identified disability is currently about 18 percent. While underemployment is much harder to track than unemployment, many reports in the disability community indicate that underemployment of people with disabilities is also very common. Consequently, it is understandable how autistic people, as a subset of the larger disability population, may face similar challenges in finding and maintaining jobs.
Major obstacles to securing and sustaining employment for autistic people that have been identified by academic studies and case reports include difficulties with:
- Managing the job-seeking and job application process (ex. developing resumes, participating in interviews, networking, etc.)
- Acclimating to new procedures and routines for jobs
- Mastering the social and communication demands of the workplace (ex. understanding job instructions, adjusting to social norms, participating on teams, etc.)
- Handling the sensory demands of the workplace
- Engaging in goal-oriented and reflexive thinking on the job, such as organization and planning
- Handling negative attitudes and stigma associated with autism
- Mental health challenges related to difficulties at the workplace
(Mawhood, & Howlin, 1999; Nesbitt, 2000; Mullera, Schulerb, Burtona, & Yates, 2003; Howlin, Alcock, & Burkin, 2005; C.García-Villamisar & Hughes, 2007; Higgins, Koch, Boughfman, & Vierstra, 2008; Lawe, Brusilovskiy, Salzer, & Mandell, 2009)
The persistence of high rates of underemployment and unemployment among the autistic population indicate a vocational service system that does not adequately provide support for autistic people who attempt to work around these vocational obstacles. A recent review by Lawe, Brusilovskiy, Salzer, & Mandell (2009) of the national statistics concerning the Office of Vocational Rehabilitation (OVR) services and equivalent state services found that many autistic people are likely to be denied access to vocational services based on a determination by professionals that they are too severely disabled to benefit from them. In another study, interviews with 18 autistic adults conducted by Mullera, Schulerb, Burtona, & Yates (2003) found that OVR services were often not adequately set up to meet the specific needs of autistic people; the researchers found that OVR counselors often did not have the training, resources, and background to assist autistic people in attaining compatible employment.
The disability support system may also not be set up to educate autistic people about their right to reasonable accommodations in the workplace. A study by Van Wieren, Reid, & McMahon (2008) of employment discrimination complaints suggested that a very small percentage of autistic people may be filing discrimination complaints when they are denied necessary accommodations under the Americans with Disabilities Act. The study found that discrimination complaints by autistic people constituted only .003% of all ADA complaints filed for a given year. Yet, autistic people represent a much larger percentage of the general population (1+% by many estimates) and an even larger proportion of the community of people with disabilities.
Another major barrier to material well-being experienced by autistic people is lack of compatible housing and living options. Several longitudinal studies in the academic literature have suggested that a large proportion of autistic people may be living with their parents or in institutions or developmental centers rather than in apartments, houses, and community living facilities (ex. Howlin, 2000; Howlin, Goode, Hutton, & Rutter; 2004; Eaves, & Ho, 2008). More recently, Saldana et al. (2009) studied the daily living situations of 74 autistic adults in the Andalusia province in Spain. Eighty seven percent of the participants were living at home with their parents. This present state has resulted from a lack of focus on establishing sufficient housing options for autistic adults and other people with disabilities who would choose to live away from home if given the option.
Most people believe that living away from home necessarily entails independent living in an apartment or house. This only represents one potential housing option for autistic adults. The development of housing supports for autistic adults necessitates flexibility and a wide range of other options, including apartment-style shared disability communities, stand-alone apartments existing on the property of a family home, vocational communities (where workers at the same company live together), homes operated by a micro board (an agency created by family members or guardians to manage a housing property), and numerous other possibilities.
Lack of adequate support resources during postsecondary education constitutes a major barrier to personal development for autistic people. Post-secondary education includes pursuit of studies past high school at vocational and trade schools, two-year colleges, and four-year colleges and universities, as well as studying for professional certifications. Robertson & Ne'eman (2008) list only a small number of universities and colleges that have developed specialized programs for autistic students: Marshall University; Western Kentucky University; Fairleigh Dickson University in New Jersey; the University of Arizona; the University of Alabama; Oakland University in Michigan; and Keene State College in New Hampshire.
Autistic students who attend colleges and universities other than these schools will often find minimal disability accommodations and services (e.g. extended time on tests) that may not adequately support some of the challenges they face in such areas as planning and organizing their studies, fitting into the social-cultural atmosphere of a college campus, forming and maintaining friendships and social relationships, living in a dorm, and managing the sensory and motor skill demands of college life (Taylor, 2005; Adreon & Durocher, 2007; Robertson & Ne'eman, 2008; Van Bergeijk, Klin, & Volkmar, 2008).
Even students who do attend the institutions listed above may be unable to participate in their specialized autism support programs due to limited enrollment size and high costs. All of the specialized support programs described earlier (except for the program at Keene State College) have limited enrollment and program fees (on top of school tuition) that often exceed $4,000 per year. When combined with tuition, room and board, and course expenses (ex. purchasing books and project materials), the cost of these specialized support programs may be prohibitively expensive for many autistic college students, especially considering that the cost of higher education for all college students has risen steadily in recent years.
Another barrier to the pursuit of postsecondary education for autistic people is the dearth of support for autistic persons who choose to pursue vocational and trade school options. No academic studies or books have been published specifically about autistic people at vocational and trade schools. (In fact, there exists a dearth of studies and books about the experience of vocational and trade school for people with disabilities in general.) This article's author was also unable to find a known support program at a vocational or trade school for autistic people.
Several research studies have indicated that mental health disabilities may occur more often among adults and adolescents on the autism spectrum than among the non-autistic population (e.g. Howlin, 2000; Stewart, Barnard, & Pearson, 2006; Jennes-Coussens, Magill-Evans, & Koning, 2006; Gillot & Standen, 2007; Eaves & Ho, 2008; Hagopian & Jennett, 2008). Stewart, Bernard, & Pearson (2006) conducted a review of 27 academic papers on depression and autism. They found that the rate of depression among autistic people might be 34 percent or higher. An earlier review of several case studies on depression and autism conducted by Howlin (2000) identified a 41 percent prevalence of depression among autistic people. The study also found higher rates of other mental health disabilities among the autistic adult population, including bipolar disorder, anxiety, obsessive compulsive disorder, and schizophrenia. Bellini (2004) and Gillot & Standen (2007) both found elevated rates of anxiety-related disabilities among autistic people, including social anxiety, generalized anxiety, separation anxiety, and panic disorder and agoraphobia. All of these mental health-related disabilities can have a huge impact on daily living, employment, community involvement, and social acceptance of autistic people.
Yet, there exists a widespread lack of adequate resources and training related to mental health disabilities and autistic people. Only a handful of professional guides and handbooks have been published on subjects concerning mental health disabilities and autistic people (e.g. Baker & Welkowitz, 2005; Baron, Groden, Groden, & Lipsitt, 2006; Paxton & Estay, 2007; Gaus, 2007; Dubin, 2009) in the past decade. Many counselors and mental health service providers may not have sufficient training for working with autistic clients, and they may not have participated in any recent professional development in the autism field. Similarly, many providers of services to autistic people may not have adequate training in mental health disabilities.
Growth in interpersonal relations during adulthood (and adolescence and childhood) involves developing friendships, romantic relationships, and other social relationships. Diverse difficulties and strengths in language, communication, and social interaction constitute a major facet of the disability of autism. Consequently, it follows that challenges in forming and maintaining social relationships would likely present for autistic adults. Numerous academic studies suggest that this is the case (e.g. Hurlbutt & Chalmers, 2002; Orsmond, 2004; Sperry & Mesibov, 2005). Yet, there exists a profound lack of resources for helping autistic adults navigate social relationships. Most support resources in the autism community related to social relationships focus specifically on autistic children and young adolescents.
While online social interaction may help autistic adults develop social relationships, online-only relationships do not allow for engaging in shared activities and recreation with friends, such as going on group outings (ex. bowling, concerts, sporting events, festivals and parades, etc.), eating together, volunteering as a group, and mutually supporting each other. Consequently, developing programs to support autistic people in navigating face-to-face social interaction is essential. Likewise, developing a base of academic studies about both face-to-face and online social interaction for autistic people is necessary.
Autistic people may also face challenges in pursuing romantic relationships. Although no academic articles about romantic relationships have been published, personal accounts by autistic people do indicate that learning how to develop such relationships and navigate dating and marriage may be particularly difficult for many (e.g. Newport & Newport, 2002; Lawson, 2005; Edmonds & Worton, 2005; Zaks, 2006; Ramey & Ramey, 2008). This problem may be exacerbated by societal views that romantic relationships are not desirable or attainable for autistic people.
These views parallel discriminatory attitudes toward people with other developmental and neurological disabilities. People with intellectual and developmental disabilities historically have faced discriminatory practices by members of society to prevent their participation in romantic relationships and to limit their ability to have children. For instance, people with intellectual disabilities commonly underwent procedures to sterilize them during the early 20th century. More than 47,000 forced sterilizations of people with intellectual and developmental disabilities in 30 states occurred in the four-decade span between 1907 and 1947 (Braddock & Parish, 2003). Although such forced sterilization for any other subset of the population is very rare in the 21st century, negative attitudes and outdated perceptions regarding romantic relationships for people with intellectual and developmental disabilities have nonetheless persisted. These prejudices have often limited the ability of autistic people to participate in romantic relationships of their own choosing.
The United Nations adopted the Convention on the Rights of Persons with Disabilities in 2006 and ratified the document in 2007. More than one hundred countries have signed onto the convention, including the U.S. The general principles and obligations toward people with disabilities espoused in the convention apply as much to the population of autistic people as they do to other disability population groups. The general principles include:
- Respect for dignity, autonomy, and independence of people with disabilities
- Full and effective participation in society
- Respect for differences and acceptance of persons with disabilities as part of human diversity
- Equality of opportunity
- Equality between men and women
- Respect for the evolving capacities of children with disabilities and respect for the right of children with disabilities to preserve their identities (UN, 2007)
While these fundamental rights outlined by the UN convention should be available to all autistic adults (and other disability population groups), the reality is that many of these rights are not available to autistic people. In particular, principles A, B, C, and D are often not observed:
- Autistic people often do not find respect for their dignity, autonomy, and independence in society, including the media.
- Autistic people may experience frequent discrimination by people who seek to maliciously take advantage of their challenges.
- Autistic people often are not full participants in their local communities and greater society.
- Autistic people often do not find respect for their differences, and their disability is not seen as a part of human diversity.
A major barrier to the attainment of healthy physical well-being by autistic adults is lack of supportive recreational and physical activity programs. Orsmond (2004) found that autistic adults who experience major challenges in social interaction and communication may be less likely to participate in organized recreational programs with high social demands because those programs may not accept and understand their differences. Consequently, autistic adults may become isolated from the community and may focus their pastimes exclusively on solo hobbies despite potential interests in participating in community recreational activities. This situation often becomes naturalized as a false belief that all autistic people have a strong aversion to participating in social recreational opportunities, a misperception that may then deter community organizations from modifying their recreational programs to enable autistic people to participate.
Another potential barrier to physical well-being is lack of understanding and acceptance of autistic adults in the healthcare system. While healthcare providers and agencies may be educated about autistic children, they may understand very little about autistic adults. This may make it very challenging for autistic adults to access healthcare services when needed. Other barriers to accessing and using the healthcare services may include filling out forms, navigating the social norms of the healthcare environment, and managing the sensory demands of health services facilities.
Enhancing QOL Through Collaboration with Autistic People
Developing solutions to the barriers discussed in this article necessitates taking a collaborative approach. One essential collaborative opportunity is to form partnerships with autistic persons who have direct experience in navigating major life challenges. They have often learned compensatory and adaptive strategies and skills that could inform the creation of new services and support resources. Service, advocacy, and community organizations that are run by autistic people should also be involved in collaborative efforts with professionals.
The Autistic Self Advocacy Network (ASAN) is an example of an international nonprofit organization that collaboratively supports researchers and professionals. Founded in 2006 by several autistic leaders of the neurodiversity movement, the ASAN is an autistic-run organization that focuses on expanding the provision of services and support resources for autistic people, while working to alter public perception about autism and counter misinformation by educating communities about autistic people. ASAN's initiatives include public policy advocacy, community engagement to encourage inclusion and respect for neurodiversity, collaboration on quality of life oriented research, and the development of autistic disability cultural activities and opportunities for engagement with other autistic people. ASAN has presented on ethical standards for autism research at the Interagency Autism Coordinating Committee (IACC), launched campaigns aimed at expanding public understanding and acceptance of autistic people, developed autism outreach materials, and advocated for increased services for autistic people (ASAN, 2009). ASAN also serves as the community partner organization of the Academic Autistic Spectrum Partnership in Research and Education (AASPIRE), a community-based participatory research collaboration with autistic adults and their non-autistic supporters and allies.
Founded in 2007, AASPIRE is a multi-university research group that brings together academic researchers, autistic adults, and autism community members (e.g. parents, teachers, occupational therapists, speech and language pathologists, and other professionals) to design and conduct research projects relevant to the needs of autistic adults. AASPIRE is currently investigating barriers to, and facilitators of, quality health care for autistic adults. It is designing four related research studies that examine this focus, including:
- An online survey of autistic adults that investigates their use of online technologies and participation in the online autistic community, their healthcare related concerns, and their recommendations for developing solutions for challenges they've experienced in adulthood.
- A qualitative study that employs in-depth interviews with autistic adults to investigate their experiences and recommendations as users of the health care system. The study will be conducted through instant messaging and email.
- A qualitative study that employs in-depth interviews with primary care providers to investigate their experiences and recommendations for providing healthcare services to autistic adults. This study will be conducted by the telephone.
- A qualitative study that analyzes publicly available dialogue about healthcare needs and challenges from the online autistic community. (AASPIRE, 2008a)
Another example is Autreach IT, a community-based participatory research (CBPR) project group in the United Kingdom. Autreach IT has adopted the CBPR principles of AASPIRE (outlined at AASPIRE, 2008b) and is carrying out two action research projects that involve: a) introducing and monitoring the use of voice-activated communication aids in a small residential care setting and b) introducing computers into a similar residential care setting (Autreach IT, 2008).
Two other potential collaborating organizations for autism research aimed at increasing quality of life for autistic people are The Autism Acceptance Project and Autism Network International. Both The Autism Acceptance Project and Autism Network International concentrate on expanding autistic disability culture. Autism Network International has annually hosted Autreat, an autistic-run conference, since 1996 (except for 2001). The Autism Acceptance Project hosts galleries that showcase artistic and linguistic expression by autistic adults.
In addition, the online autistic adult community presents an important resource for collaboration. The autistic community has a large presence on blogs, email lists, websites, and threaded online forums like those hosted at the autistic-run website Wrongplanet.net (Wrongplanet.net, 2009). There are also small autistic communities on the social networking sites Facebook (Facebook.com, 2009) and Twitter (Twitter.com, 2009).
Future Transformations in the Service Delivery System
A greater shift of focus by the professional and research communities onto the quality of life domains discussed earlier has immense implications for the autistic adult population. Studying these quality of life areas in greater depth could lead to the development of expanded societal and community resources for autistic people. At the same time, deeper understanding of quality of life-related issues could transform how existing services are currently delivered to autistic clients. Furthermore, studying the existing challenges impacting autistic people could assist with developing the means for improving public understanding of autistic people and countering historical stigma and stereotypes. This, in turn, could greatly benefit the well-being of autistic adults.
Achieving all of these goals necessitates changes in the allocation of funding for autism research and services. Many quality of life issues have not yet been studied in depth due to a lack of sufficient funding streams to support the studies. It is difficult to perceive of a major expansion of research on quality of life issues in autism without a corresponding growth in funding allocations. Likewise, many funding streams often exist for services for autistic children and children with other disabilities, but relatively few funding streams support autistic adults.