Encyclopedia of Autism Spectrum Disorders

Living Edition
| Editors: Fred R. Volkmar

Personal Perspectives on Autism

  • Kabie BrookEmail author
Living reference work entry
DOI: https://doi.org/10.1007/978-1-4614-6435-8_102044-1

Definition

Definitions of self-advocacy vary; it has been described as follows:

An individual’s ability to effectively communicate, convey, negotiate or assert his or her own interests, desires, needs and rights. It involves making informed decisions and taking responsibility for those decisions. (Van Reusen et al. 1994 as cited in West et al. 1999)

Also, as a civil rights movement (Williams and Shoultz 1982 as cited in Goodley, D. and Ramcharan, P. 2005).

However, it is currently defined and it is most often referred to by what could be termed as outsiders – those who aim to define and enhance the concept of self-advocacy but who do not consider themselves to be engaged in self-advocacy; definitions are laden with assumptions and values framed within a normalization agenda. Self-advocacy is seen as something that disabled people may engage in to improve their lot and something that may increase their chances of a more normal or self-directed life. Nondisabled individuals do not generally see self-advocacy as a process that they themselves would be engaged in, but they will debate its meanings.

What of Autistic People's Organisations (organisations run and controlled by Autistic people), those who promote self-advocacy from the inside out as it were? It appears that on the whole, the official line is very much in synch with the aforementioned definition. Looking at www.autreat.com, the website of Autism Network International (ANI), they state that “the best advocates for autistic people are autistic people themselves” but also that some autistic people “are too young, or because they do not have adequate communication skills, are not able to advocate for themselves.” This, to me, highlights the limited definition of self-advocacy that implies or explicitly states that a level of ability as judged by others is inherently needed to engage in self-advocacy activities. This idea is in line with the thinking that claims that self-advocacy is an acquired skill, something that must be taught in a formal way.

I would like to reconsider these definitions of self-advocacy, to include what may be termed more fundamental or more natural forms of expression of needs, wants, and desires. Is the person who finds their environment unpleasant or even intolerable not also engaging in self-advocacy when they stands and moves to leave a room? How about the person who refuses to board a bus to school but cannot explain that the reason behind this is because of bullying or other abusive experiences that they will encounter on the journey or at their destination? I believe that self-advocacy has become narrowed to such an extent that we are moving it into an elite form of expression; we have allowed nondisabled and more specifically here nonautistic people to define what can and what cannot be termed as self-advocacy. A narrowing to rely on thought through intent, high levels of reasoning, and sophisticated communication with high levels of understanding (as judged by outsiders) leaves those within our autistic communities who are not able to reach these standards languishing.

History

The history of self-advocacy as a named concept can be traced back to the 1960s. At that time, a Swedish activist Dr Bengt Nirje helped disabled people to organize a group which was composed of college students and the disabled people themselves who were expected to make their own plans for activities and were encouraged to make their own decisions, even if mistakes were made. Dr Bengt Nirje described this as “akin to any decent revolt” (Nirje, B. 1969 as cited in Parallels of Time a History of Developmental Disabilities).

In the 1970s, the first self-advocacy conferences were held, but still the majority voice was that of nondisabled people. In 1974 though, the then new organization People First held its first conference with nearly 600 self-advocates in attendance, in Oregon, USA.

At this time, those predominantly engaged in formally recognized self-advocacy were those persons labeled as having learning difficulties, people who had been inspired by the civil rights movement and recognized that disabled people were being left behind.

The inclusion of autistic people in the self-advocacy movement at this time was not overt, but there’s no doubt that they were there. Autistic self-advocacy organizations as distinct from the wider self-advocacy movement can be traced back to the early 1990s. Autism Network International (ANI), an advocacy organization run by and for autistic people, was formed in 1992 by Jim Sinclair, Kathy Lissner, and Donna Williams. ANI describes itself as “an autistic run self help and advocacy organisation for autistic people” (autreat.com). ANI went on, in 1996, to present the first Autreat, (www.autreat.com), an annual retreat style conference run by and for autistic people.

Autreat and ANI have become the inspiration for other events, such as Autscape (www.autscape.org), a UK-based annual conference also run by and for autistic people.

Events such as Autreat and Autscape and organizations such as ANI have, over the years, inspired many autistic individuals to speak out, either as individuals or by collaborating and joining together to form a larger more powerful group voice.

ARGH, the organization that I belong to and of which I was a cofounder (www.arghighland.co.uk), was formed when a small group of autistic people came together in 2005 to try to change things for ourselves and other autistic people. Principally a lobbying and campaigning group, we see ourselves as an autistic people’s organization engaged in collective advocacy, while at the same time calling for more recognition of self-advocacy.

One of the most well-known autistic self-advocacy organizations is the Autistic Self-Advocacy Network (ASAN) (www.autisticadvocacy.org), founded in 2006. ASAN has chapters across the USA and more recently in Australia. Ari Ne’eman, the president of ASAN, says, “The object of autism advocacy should not be a world without autistic people – it should be a world in which autistic people can enjoy the same rights, opportunities and quality of life as any of our neurotypical peers” (Ne’eman 2010).

Online organization through message boards and lists has been around almost since the Internet began; in 1994, the ANI listserv started, and in 1996, Martijn Dekker set up Independent Living or InLv for short, an online support group for autistic people.

Communication with each other, sharing experiences, and supporting each other, all of these things contribute to the environment that allows self-advocacy to flourish, at all levels.

Current Knowledge

Even though self-advocacy by individuals and the formation of organizations promoting self-advocacy have been established for some time, the idea of autistic people speaking for themselves is still seen as a novelty by many. One prominent autistic activist says, “Self advocacy is fundamentally about true equality, respect and power, and about recognising and changing the current imbalances in all of those things. Real self advocacy will always upset the status quo in some way” (Baggs 2005).

The dominance of nonautistic voices in conversations about us has remained. Nonautistic advocates speak for us, often without engaging with those they claim to represent to gain a mandate before taking their place at the table to speak for us. Self-advocacy is in itself a contradictory concept in that it only exists as a necessity because of societal expectations, discrimination, and prejudice. Nondisabled people do not engage in self-advocacy when they make choices and speak up for their rights; they are just living their lives.

Autistic people, just as other disabled people and people from other minority groups, are disempowered by societal norms that lead us to engage in what has been labeled as self-advocacy. This label can be used to replace the more empowering and perhaps more threatening (to those around us) descriptions of what we are actually doing. It raises the question: has our fight for equality been manipulated in meaning to suit an ablest agenda? Self-advocacy is promoted as a way to empower people, but sometimes it feels as though the label is more about presenting requests for equality and rights as a more manageable and acceptable concept to nondisabled people. In this way, a power imbalance can be maintained; norms of society allow us to speak within siloed concepts of “specialness,” with special language describing what others take for granted as usual everyday occurrences or actions.

Mark Neary explores the language of the social care system that can make people’s lives, in this case his son, seem less normal in “ten jargon phrases used for my autistic son,” one example he gives:

If I shout and swear, I’m angry about something. If Steven shouts and swears, it is challenging behaviour and new behaviour management plans need to be drawn up. (Neary 2013)

Neary’s ideas neatly sum up the division between action and perception of action from an outsider’s perspective – nondisabled people. Autistic people are exposed to societal norms that many of us find uncomfortable or alien to us from birth. Many of us receive early intervention – this being seen as essential for young autistic people. Although the term interventions is very broad, and they cannot all be judged to be alike, the pressure to conform, to be indistinguishable, can lead us to a lack of sense of self. Many interventions such as ABA are based upon modifying outward behavior by adherence to the therapist’s instructions; in some cases, this will go as far as how and where a child holds their hands and focuses on an insistence that the nonautistic way is the only way to communicate.

It is difficult to see how these approaches are teaching our young people about selfhood, autonomy, and the value of learning when to say “no.” There appears to be little regard to personhood as an autistic individual, and no examination of what happens to self-expression if autistic expression is stifled. As Simon Baron-Cohen says, “the need to respect how a person thinks and feels, respecting their real nature, rather than simply focussing on whether they can be trained to change their surface behaviour is essential.”

Future Directions

It is surely our duty as caregivers or community members to ask the following question of all those we entrust to guide our autistic loved ones: how are they being safeguarded to ensure that their personhood and future are protected?

Many parents have been allies to autistic organizations from their inception; this is a concern not only for autistic people but for many who recognize the need for their children (of all ages) to be able to speak up and make themselves heard in any way that they can. For some of us as we age, home living choices, such as what we eat, where we sit, and who we communicate with and how, do grow into political action. Whether the self-advocacy label applies to activism and campaigning (for ourselves or others as self-advocacy is not just about us as individuals) or is about our everyday lives, it is as equally important and valid.

Schools, parents, and other caregivers have a pivotal role to play. It is quite natural for very young children to engage in what may be termed as self-advocacy for us: shouting “no,” turning away from food offered on a spoon, for example. This is quite usual and expected behavior, but after a diagnosis of autism and as we grow, particularly for those of us with limited or nonmainstream forms of communication, our actions can start to be labeled challenging behavior. Our attempts to be heard, to make our needs known, to signal danger, or fear, can be misinterpreted and punished because of our struggle to communicate and to be understood by people who are not experienced in our methods of communication. It is often accepted that self-advocacy is all about the person advocating, that they need to be skilled, and that the onus is upon them to make themselves understood. In fact, this is like any other form of communication, the receiver has to be in tune with what is being communicated, they must understand and be sensitive, and they must anticipate that a person will be making self-advocacy attempts, understanding the individual’s communication style, and adapting to active listening is essential to promote that persons well-being.

Misunderstandings when self-advocacy communication is ignored or mistaken for challenging behavior and the consequences: punishments and being ignored (sometimes quite unintentionally) can start at a very early age. It is easy for people to lose the tools needed for self-advocacy; internalized oppression can become a barrier to effective self-advocacy and mental wellness. If this can be recognized and the need to promote healthy choice making and boundaries that are no more restrictive than those placed upon our nonautistic peers, then we can more effectively sow the seeds for self-advocacy at all levels. By promoting early skills across all learning environments and within the home, we can engineer a situation that guards against loss of self-advocacy skills and ensures that self-determination is more easily fostered throughout the life span. Current self-advocacy training often takes place during transition to adulthood rather than being a lifelong learning experience. All children and young people, not just adults and not just disabled people, would benefit from this approach.

Approaches that encourage autistic people to explore their way of being without expectation of nonautistic behavior and the promotion of autistic voices at all levels: from the playground to the workplace, the boardroom, in government, and always in decisions that affect us or our community are overdue. We need to stop promoting self-advocacy as a novelty, an elite concept for the few, and to recognize that it is for everyone.

In modern society, with the closure of long-stay hospitals, the increasing public awareness of autistic people (and disabled people in general) in our communities and as equals, there should be no need to still separate the right to be heard under a label – self-advocacy. However, in reality, we have to remember that autistic rights and the fight for equality are still in its infancy, and many of us are still not being heard. The concept of self-advocacy is essential, and the label does have its place to act as a reminder to others to listen; it is very much of its time, but while it is still necessary to give special labels to equal rights, we must reflect upon how much progress we are truly making toward equality from the autistic community and the wider disability community points of view.

References and Reading

  1. Baggs, A. M. (2005). The meaning of self advocacy, the real voice of autism. http://archive.autistics.org/library/self-advocacy.html
  2. Baron-Cohen, S. (2014). Radical behaviourism. What scientific idea is ready for retirement? Edge.org. www.edge.org/response-detail/25473
  3. Bascom, J., 2012. Loud Hands: Autistic People, Speaking, Washington, DC: Autistic Self Advocacy Network.Google Scholar
  4. Goodley, D., & Ramcharan, P. (2005). Advocacy, campaigning and people with learning difficulties. In Learning disability: A life cycle approach to valuing people (p. 150), Open University Press, McGraw - Hill Education, Maidenhead.Google Scholar
  5. Ne’eman, A. (2010). The future (and the past) of autism advocacy. Disability Studies Quarterly, Piece 1, 30(1).Google Scholar
  6. Neary, M. (2013). Viewpoint: 10 Jargon phrases use for my autistic son. BBC NEWS. http://www.bbc.co.uk/news/blogs-ouch-23423541
  7. Parallels of Time a History of Developmental Disabilities. mn.gov/mmddc/parallels/index.html. The Minnesota Governor's Council on Developmental Disabilities.
  8. The Same as You? (2000). Scottish Government. http://www.scotland.gov.uk/Resource/Doc/159140/0043285.pdf
  9. West, L. L., Corbey, S., Boyer-Stephens, A., Jones, B., et al. (1999). Transition and self advocacy. LD online. http://www.ldonline.org/article/7757/

Copyright information

© Springer Science+Business Media New York 2015

Authors and Affiliations

  1. 1.Autism Rights Group Highland (ARGH)InvernessScotland, UK