The paper written back in 2006, and things have improved slightly since, two of the organisations cited have since merged to become "Autism Speaks" and there have been significant appointments to the US Inter Agency Autism Co-ordinating Committee, two colleagues of mine Stephen Shore EdD and Ari Neeman.
Here follows the original paper, which has considerably influenced my own research position:
“Nothing about us without us” has been a rallying cry for organisations of disabled people since the 1980s. As James I. Charlton writes, “’Nothing about us without us’ requires people with disabilities to recognize their need to control and take responsibility for their own lives. It also forces political-economic and cultural systems to incorporate people with disabilities into the decision-making process and to recognize that the experiential knowledge of these people is pivotal in making decisions that affect their lives” (Charlton, 2000, p. 17).
This change has meant including organisations of disabled people in research about their lives and their health. In autism research, however, it is almost unknown for people with ASDs to be involved in a research role other than that of passive subject. But as people with autism network and become organized, they are asking to become participants and partners in research and policymaking.
Progress towards this goal has been slow, however. Although participatory research has been done with parents of people with autism, teachers and other education “stakeholders” (for example, Dymond, 2001), and community groups with an interest in autism (for example, Israel, et al., 2005), very few studies have involved adults or children with autism. Indeed, the only researchers I could find who use participatory or emancipatory methodology regularly are those associated with the Autism Centre at Sheffield Hallam University, although I also know of unpublished projects, and some people with autism have been participants in projects related to learning difficulties.
Contrast this to learning difficulty research, where people with intellectual impairments are increasingly involved in active partnerships with researchers, and where the paradigm of normalisation is falling out of favour (for example, see Brown and Smith, 1989). In mental health research as well, service users are shaping the research agenda: for instance mental health service users produced the “Knowing Our Own Minds” report for the Mental Health Foundation in 1997, based on a three-year, user-led study.
What’s the difference? Do researchers investigating issues related to intellectual disabilities and mental health have a different mindset, are their organisations more vocal or accepted, or are other factors at work? What would autism researchers need to do to follow their example—and should they?
In this paper, I explore factors that may underlie this difference. These include the way people with autism have historically been viewed; the continued prevalence of “normalisation” as a goal in autism research and services; the role of funding sources in research direction; and the difficulties faced by organisations of persons with autism. I also anticipate procedural problems that may occur when carrying out participatory and emancipatory autism research, discuss the potential benefits of such research designs, and suggest what we can do to move forward.
A separate history.
The history of autism research has many dark corners, from the use of dangerous drugs on disabled children, to the acceptance of coercive and even abusive methods of working with autistic individuals. Such errors are easy when a group of people is seen as sub-human, and this was a mainstream view of people with autism for many decades. Well-known “experts” employed dehumanising descriptors such as “animal-like” (Bettelheim, 1967, p. 360), called their research subjects “monsters” (Tustin, 1992, p. 13), or suggested that only those people with autism who could be normalised qualified for full status as human (Lovaas, in Chance, 1974). Autism was also researched in isolation from other neurological conditions with which it overlaps, and in many cases still is.
Although some of the most extreme terminology has fallen out of fashion, a great deal of practice-oriented autism research retains normalisation as its primary objective. For example, the frequently stated goal of one of the best-known autism interventions is that its subjects should become “indistinguishable from their peers” (Lovaas, 1987). In addition, the current public and laboratory discourse of medical and genetic research into autism revolves around concepts like risk and prevention. The metaphors and terminology may have changed, but all too often people with autism are still not seen as part of the diverse human family, unless their differences can be eliminated or camouflaged.
Without conducting an in-depth survey of current researchers’ beliefs about autism and attitudes towards research subjects with autism, one cannot determine whether their mindset differs significantly from their colleagues in learning difficulties or mental health research. Their apparent reluctance to work in partnership with organisations of people with autism is telling, but it may also have to do with the newness of these organisations, or with other outside pressures.
It is likely that many researchers are simply unaware that such organizations exist, and that they have an interest in autism research and practice. A number of national and regional groups have been founded by adults with high-functioning autism or Asperger syndrome, however, and other groups include adults who are non-verbal and/or have intellectual impairments (see Appendix A). None of these groups is highly capitalized, with most being all-volunteer, grassroots affairs. Many carry out their activities predominantly online, which may make them seem less “real” to researchers but fits the communication style of many people with autism.
The partners that researchers often do turn to are national autism associations, such as the National Autistic Society (NAS) in the UK and the Autism Society of America (ASA), or research-focused groups, such as the Research Autism trust, the National Alliance for Autism Research (NAAR) or Cure Autism Now (CAN). All of the national organizations were founded by parents, and continue to be run by alliances of parents and professionals. Some have added one or more individuals with autism to their advisory boards, but they cannot be described as organisations of autistic people. Nor is it easy for people with autism to take part. “The NAS didn’t add me to the board, I pushed myself on,” says Larry Arnold, who has since been joined in this role by two more adults with ASDs. In some parent-run organisations this is almost impossible, he added: “I’ve seen the criteria for getting on the ASA [board]—you have to have a lot of experience with business administration of other organisations, which is exclusionary for autistic people.”
This author was unable to find any people with autistic spectrum disorders serving on the governing or advisory boards of the newer, research-focused organisations. NAAR, for example, has 23 board members. Many of these are parents of people with autism, but none declare themselves as people with autism (National Alliance for Autism Research, 2006). CAN describes itself as “an organization of parents, clinicians and leading scientists,” explicitly leaving people with autism outside decision-making about their lives (Cure Autism Now, 2006).
Even when a few people with autism are taken into the fold, this does not ensure that an organization will henceforth represent the views of people with autism, of course. Parents and professionals inevitably continue to dominate, and their needs do not always coincide with those of children—and are even less likely to do so when it comes to adults. Consequently, when these groups fund autism research, the priorities they choose may be quite different to those that people with ASDs might have chosen.
Like other people with disabilities, adults with autism are now seeking opportunities for self-determination and independent lives. This can bring them into conflict with organizations and systems founded on a presumption of dependency. Recognition of this change has led to widespread change in other disability organisations: for example, Mencap requires that at least one-third of its Board of Trustees be people with learning disabilities (Mencap, 2006).
These growing numbers are important, as there is a danger of tokenism if one or two people with a disability are seen as speaking for the totality. In autism, this may be doubly so, as difficulty in social understanding is a hallmark of the condition. For this reason, working with democratic organizations of disabled people, or in some cases groups of service users, is generally a better idea than merely involving one or two individuals.
Participatory and emancipatory research.
Participatory research involves partnership with individuals who have the disability being researched. They may, for example, identify a research problem with which they need help, work with researchers to analyse the problem and any data collected, and guide the project through to its completion, exercising ultimate control over its direction (Cocks and Cockram, 1995). Such research may be user-led or researcher-led.
Emancipatory research shares these characteristics but goes further. Chappell (2000) summarises this paradigm as having improving the lives of disabled people as the goal of research, providing greater opportunities for disabled people themselves to do research, requiring non-disabled researchers to take a reflexive approach, relying on democratic organizations of disabled people for research direction and funds, and being accountable to these clients. Colin Barnes and others place an additional emphasis on changing the material and social relations of the research process, which means such research should be user-led and user-funded (Barnes and Mercer, 1997).
In autism research, typically researchers conceive of the question or issue to be investigated. They then seek funding from academic institutions, government bodies, or organizations that are not made up of or controlled by people with autism. Research is then carried out by professionals; professionals also control ethical approval. Consent may be obtained from research subjects, or from their carers, but frequently these subjects do not have a full understanding of the study in which they are taking part. Research results are released to a professional audience through conference papers, journal articles, official reports, or books. These documents are certainly read by some individuals with Asperger syndrome or high-functioning autism, but there is no effort to deliberately share findings with people on the autistic spectrum. For those who cannot read or who find processing texts written in specialized medical or academic language difficult, the information may not be accessible at all.
Autism research has been done this way for 50 years now. Is there a good reason to change? I believe the answer is yes.
First, the findings are more likely to be accurate. As Chappel (2000) writes, “it is widely acknowledged now that people with learning difficulties are the best people to ask if researchers want to know their views and experiences.” In autism research, we are still talking mostly to parents, carers, and education professionals. That means we are missing important information about how people experience the world, what their priorities are, any health concerns they may have, and how they are impacted by social exclusion, just to name a few areas of potential interest to researchers. As another researcher writes, in regards to working with mental health service users, “user researchers bring a new and different perspective, which generates new ideas and constructs and enhances the quality of the whole research process” (Beeforth et al, 1994).
Second, people with autism can help us avoid doing things that may confound our research results. For example, Frank Klein, an adult with high-functioning autism, took part (as a research subject) in a study at Pittsburgh University. On his Web site, he discusses the role that accommodation in a busy hostel for relatives of hospital patients played in making this experience more stressful. Klein is articulate and aware of his needs, but was not asked about them in advance. He muses that his performance on tests may have been lower than usual due to the stress of being in an unfamiliar environment (Klein, 2002).
Third, disability research that is driven by people with disabilities is likely to actually be useful. One of the most frequent complaints heard when discussing recent autism research with people with autism or their carers is that research seems to be divorced from the actual needs of living persons with autism. This is one of the factors responsible for the notable presence of parent-researchers in the autism field, but as noted previously, the interests of parents and those of people with autism do not always coincide.
As regards publicly funded researchers in the UK, particularly those of us who are affiliated with universities or government institutions, there may also be a legal impetus for change. The new Disability Equality Duty mandates promoting equal opportunities for disabled people—including promoting positive attitudes towards people with disabilities and involving them when drawing up policies. Although its potential impact has not yet been explored as regards research policies and practices, disability activists may find the DED to be a useful lever in gaining a participatory role in research that takes place in universities or uses public funds.
Involving people who have an ASD diagnosis in research would not be without real challenges, of course. Although people believed to have Asperger syndrome have long been involved at the top level of various research communities (for example, animal scientist Temple Grandin), they do sometimes have difficulty working within typical research structures. This may be particularly so should they decide to devote themselves to work related to autism.
It’s likely that most people with high-functioning autism or Asperger syndrome in research careers go largely unnoticed, as their single-mindedness, ability to focus on detail, and willingness to delve into tricky problems with obsessive zeal are a bonus in the lab. These abilities are something they share with the best neurotypical researchers, who can also bring their own gifts to bear on projects. The ability to multitask, for example, is essential when managing complex projects, and can be difficult for some people with autism. Good social skills are needed to navigate the funding maze, get important colleagues on board, and make a team work well together. People with autism may require support to communicate and participate, particularly if they have learning difficulties or do not use verbal or textual communication.
For individuals who rely on disability benefits for income, being paid for their work—or even being reimbursed for costs such as transport or meals—can also be problematic.
In addition, organizations of people with autism are still relatively new, which can present difficulties when partnering with established researchers. In comparison to parent organizations and autism research organizations, they have little financial capital. Most are entirely voluntary, and some do not have fully democratic structures. The nature of autism can make successful organising a difficult task, as individuals’ special interests and social difficulties can make working together a challenge.
Non-disabled researchers are more likely to have access to resources, academic or scientific oversight, and recourse to ethics committees with established guidelines. On the other hand, people with autism are the ultimate experts in what it is like to experience life with autism. Working in partnership simply makes sense if the goal is useful data that can be applied to improve the lives of people with autism. We have a lot to offer each other.
Making a change.
The experiences of researchers who are now working in partnership with people who have learning difficulties or who have been diagnosed with mental ill health shows that these problems can be overcome. As Linda Ward wrote, “We now have positive models of practical ways in which people with learning difficulties can, and have been, involved in research in a variety of ways: as originators of the research idea; as advisers or consultants to a research project; as research workers or interviewers; and as disseminators of research findings” (Ward, in Barnes and Mercer, 1997: p. 7). Nine years ago, Ward was reflecting on ten years of practice, which places autism research nearly two decades behind. Intellectual disabilities researchers have also come up with innovative ways of working with people who are non-verbal or exhibit challenging behaviour, methods quite applicable to people with autism.
Perhaps the first task that autism researchers face is simply accepting that participatory and emancipatory designs are possible and desirable. Understanding of the social model of disability as it applies to autism would be a good start—realising that much of what disables people with an ASD diagnosis is not a medical condition, but a difference that the larger society currently finds difficult to accommodate. Alleviating the unwelcome impact of health problems experienced by people with autism is certainly important, but we need to make an equal effort to actually improve the quality of life of people with autism. Once mindsets change, researchers can look into and adapt methods of working that have been used with other populations, and work with people who have autism to see if additional, autism-friendly methods can be added to this repertoire.
Finally, organizations of people with autism need to be strengthened. Ongoing financial support is needed, along with practical help in capacity building, consciousness-raising, and communication strategies. It would be tremendously helpful if researchers would lend their expertise to this effort. This doesn’t require pure altruism: the development of strong, sustainable organisations of people with ASDs can only benefit researchers down the line, as more people with autism are able to find their voices and develop the ability to partner with us.
This researcher believes that it will be a long time before any organization of autistic people is in a position to commission and fund research, as several organizations of people with learning difficulties and mental health service users have already done. Participatory and emancipatory research is possible now, however, and is already being done in a small way. This good practice needs to be built upon and extended. Not only can participatory research offer direct benefits to both people with autism and autism researchers, well managed projects will help us to develop the methodologies and abilities needed to move even further—together.
Barnes, Colin and Mercer, Geof (1997) Doing Disability Research. Leeds: The Disability Press.
Beeforth, M., et al. (1994) “Have we got views for you: User evaluation of case management.” London: Salisbury Centre for Mental Health.
Brown, Hilary and Smith, Helen (1989) “Whose ‘ordinary life’ is it, anyway?,” Disability and Society, 4(2): 105-119.
Chance, Paul (1974) “After you hit a child, you can’t just get up and leave him: You are hooked to that child,” Psychology Today, January 1974: 76-84.
Chappell, Anne Louise (2000) “Emergence of participatory methodology in learning difficulty research: Understanding the context,” British Journal of Learning Disabilities, 28: 38-48.
Charlton, James I. (2000) Nothing About Us Without Us: Disability Oppression and Empowerment. Berkeley: University of California Press.
Cocks, E. and Cockram, J. (1995) “The participatory research paradigm and intellectual disability,” Mental Handicap Research, 8(1): 25-37.
Cure Autism Now (2006) “About Cure Autism Now.” Available online at: http://www.cureautismnow.org/site/c.bhLOK2PILuF/b.1031951/k.EB1C/Key_Fac... [Accessed 14 September 2006)
Dymond, Stacey K. (2001) “A participatory action research approach to evaluating inclusive school programs,” Focus on Autism and Other Developmental Disabilities, 16(1): 54-63.
Israel, Barbara, et al. (2005) “Community-based participatory research: Lessons learned from the Centers for Children’s Environmental Health and Disease Prevention research,” Environmental Health Perspectives, 113(10): 1463–1471.
Klein, Frank (2002) “Pittsburgh Adventure.” Available online at: http://home.att.net/~ascaris1/pitt.html [Accessed 27 September 2006]
Lovass, O.I. (1987) “Behavioral treatment and normal intellectual and educational functioning in autistic children,” Journal of Consulting and Clinical Psychology, 55: 3-9.
Mencap (2006) “How we’re run.” Available online at: http://www.mencap.org.uk/html/about_mencap/how_we_are_run.asp [Accessed 27 September 2006]
National Alliance for Autism Research (2006) “NAAR Board Biographies.” Available online at: http://www.naar.org/about/boardbio.htm [Accessed 14 September 2006]
The following is a short list of organisations of autistic people of which the author is aware. There are additional organisations outside of the English-speaking world, and attached to organisations run by parents and professionals. Many adults with autism may also be members of learning disability self-advocacy groups or organisations.
Asperger’s Association of New England (AANE)
182 Main Street
Watertown, MA 02472
Autism National Committee
P.O. Box 429
Forest Knolls, CA94933
Autism Network International
ANI sponsors the Autreat conference for people with autism, runs a mailing list, and undertakes other activities
Developmental Adult Neuro-Diversity Association (DANDA)
c/o Mary Colley
46 Westbere Rd.
London NW2 3RU
Global and Regional Asperger Syndrome Partnership (GRASP)
135 East 15th Street
New York, NY 10003
This was first published in 2006 as one of the papers for the All Wales Autism Resource (AWARES) online conference. http://www.awares.org/