In 2013 I submitted as assignment on autistic people's writings as part of my Masters in Autism (Adults) for the University of Birmingham. The title of the topic as set by the university and my essay follows:
There is an ever-increasing body of literature from people diagnosed with autism who are willing to share their experiences. Discuss and evaluate the potential impact of this body of literature upon other people on the autistic spectrum, upon autism researchers and upon providers of support and services.
This essay will describe the growing body of writing by autistic writers, particularly that which has flourished with the general increase in internet availability. It will show evidence of the significant impact these authors have had on research, on support and service provision and on the lives and experiences of other autistic people and their families, including the author’s own. Finally it will examine how autistic writings could impact even further in these areas in the future.
The essay follows the convention as in Sinclair (1999) of employing the term ‘autistic person’ rather than ‘person with autism’. In the author’s experience, the majority of autistic people, including autistic writers, have expressed a preference for this terminology.
Before examining the literature, I shall provide some illustration of the impact of autistic writings from a personal perspective. My son was diagnosed with Autistic Spectrum Condition when he was two years old and I read widely to determine how best to support and help him. All the books I read were written by autism professionals and while they were extremely helpful, I still had more questions than answers so I sought help online. The first websites I perused predicted dire outcomes for my (at the time) non-verbal son unless I engaged him immediately in biomedical or intensive behavioural therapy and they presented autism as a facet of the person that could be removed with just the right type and level of intervention. These websites encouraged me to aim to make him ‘indistinguishable from his peers’ but investigation of the techniques promising to normalise my autistic son established that their claims were based on little to no conclusive evidence. Instead I enrolled him in a specialist nursery school and he received speech and language therapy, the primary benefit of which was teaching me better ways to engage him and promote his communication.
In time I took part in a National Autistic Society (NAS) EarlyBird programme which aims to support parents of pre-school autistic children by ‘empowering and helping them facilitate their child's social communication and appropriate behaviour in their natural environment.’ (National Autistic Society, n.d.). I also joined a support email list with a membership comprising autistic adults and the parents of autistic children and young people. Via these I discovered the books of well known autistic authors like Temple Grandin and Donna Williams and for the first time read personal accounts of autistic lives and experiences.
Around the same time I found the site ‘Ooops...Wrong Planet!’ run by a Canadian autistic woman (Norman-Bain, n.d.) which at the time contained articles about all aspects of autism, most written by autistic people. One of the most challenging and ultimately transformative articles I read then was ‘Don’t Mourn For Us’ (Sinclair, 1993) in which parents are invited to join autistic adults ‘in strength and determination, in hope and in joy’ to teach, care and advocate for autistic children. These writings helped me change my goals for my son; from then I wished to accept and embrace his autism, to maximise his potential, to increase his opportunities and to work towards making the world a better place for people like him.
In 2006 I started to blog about my children, their education and autism (McDaid, 2006) and I joined other parents of autistic children, autism professionals and autistic adults in a blogging collective; The Autism Hub. This led to the steepest part of my learning curve on autism and disability mainly due to the interactive nature of blogging. The articles and blog posts I read by autistic authors and the discussions we had, challenged my thinking and assumptions on the most fundamental aspects of our shared humanity. Some of the autistic writers I connected with over the years became good friends, many were able to advise me on issues I faced raising my autistic son and all helped to deepen my understanding of disability and autism.
According to Baggs (2006) the first published autistic author was David Eastham whose book of poetry was published in 1985 (Eastham et al., 1985). Since then dozens of books and book chapters have been written by autistic writers, many of whom have gained recognition among the general public. One such writer is Daniel Tammet whose memoir ‘Born on a Blue Day’ was a best-seller (Tammet, 2006) and who appears frequently on television and radio shows. Also well known is Temple Grandin who has written 8 books, the first of which was published in 1986 (Grandin and Scariano, 1986) and who was the subject of the semi-autobiographical TV movie, ‘Temple Grandin’ (2010).
But the real revolution started when autistic people began to congregate online in increasing numbers to self-advocate, offer support, share information, socialise, educate and entertain. They wrote about the representation of autism in the media. They reached out to parents telling us how we could better understand and support our children (Grantham, 2011) and encouraging us to become more informed allies (Schwarz, 2004). They have written on how we must work towards real and meaningful inclusion (Evil Autie, 2013). They expressed justifiable anger for the abuses, vilification, silencing and neglect they have endured. They proved their resilience and strength, their bravery and compassion in the way they supported each other and continued to fight for their rights.
They found common ground with the general disability rights movements, rejected the prevailing medical model of autism, promoted social model ideas based on the concept ‘nothing about us without us’ and clarified that they are the real experts on autism. They faced tremendous barriers in their efforts to instigate a rights-based model of autism advocacy. Their ideas have been misrepresented and they have even been accused of lying about their diagnoses (Lutz, 2013). But they forge on and via their writings, autistic people proved that being unable to talk is not synonymous with having nothing to say.
Autistic writers introduced the concept of ‘neurodiversity’:
‘… a word that has been around since autistic people started putting sites on the internet. It has since been expanded to include not just people who are known as "autistics and cousins", but to express the idea that a diversity of ways of human thinking is a good thing, and dyslexic, autistic, ADHD, dyspraxic and tourettes people to name but a few all have some element in common not being neurotypical in the way our brains work.’
The crux of neurodiversity is that it is ‘part of the general idea that disabled people should have human rights’ (Dawson, 2007).
Clearly autistic people don’t comprise a homogenous community. As in any disparate collection of people, disagreements are common but people speaking their mind and sharing their perspectives leads to positive change.
Autistic people diagnosed with different categories of autism, from disparate backgrounds and possessing a variety of skills have contributed to this growing body of work. They may be university educated or living in a group home or have experienced homelessness. Some communicate using forms of augmentative and alternative communication (AAC), others have high levels of verbal acuity. A number of them require help with many aspects of everyday life, others are raising families or running large companies. There are autistic writers who share their desire to cure their condition. Many have co-existing medical conditions or write about the intersection of autism with other aspects of their lives. There are people who fit all the previous descriptions in some ways or at some times and more yet who defy categorisation but all share characteristics that define autism.
The democratisation of writing via the internet has meant that people no longer must find a publisher before their ideas can be shared with the public. Moreover, comments sections and social media sites like Tumblr, Facebook, YouTube and Twitter encourage interaction so there are fewer passive readers but a growing group of participating readers and writers. The tools for communicating online continue to change in pace with technological advances and autistic writers are adept at using every means available to share their messages.
This body of literature by autistic writers has demonstrably impacted significantly on other autistic people. My understanding of my own autistic son has been enhanced by all the articles and books by autistic writers I have read over the years and our interactions. They helped me reach acceptance of his condition faster than I otherwise would have and raised my expectations for his future happiness.
Autistic writers have been successful in getting their messages across on their own blogs and forums but also via mainstream media. Although the typical depiction of autism in the mainstream media is still of a young child and the negative impact on the family of the child’s disability, articles based on interviews with autistic self-advocates are also reaching wide audiences. Saner (2007) reported in The Guardian on autistic self-advocates and allies. More recently, The Guardian had an article about businesses seeking out autistic employees and the autistic young people making a success in their careers (Hill, 2013) which will impact on and encourage other autistic people.
Hacking (2009) writes about ‘autism narratives’ which ‘are creating the language in which to describe the experience of autism, and hence helping to forge the concepts in which to think autism.’ He considers four published autistic authors and suggests that autism fiction and autobiographies will influence future generations of autistic writers ‘who will give accounts that are textured by the early exposure to role models.’ He also explores the tendency for publishers to insist that these autobiographies provide otherwise impossible glimpses ‘inside the [autistic] mind’ a claim, he says is lacking in their promotion of non-autistic biographies.
McGeer (2009) writing about Hacking (2009) suggests that autistic peoples’ writings have an immense impact on other autistic people:
‘As their external environment changes—as it becomes more enriched from the perspective of offering more informed, and hence more suitable, kinds of emotional and physical support, teaching and therapy—so too will their own developmental prospects be transformed. (…)
If autistic self-narratives have the power to change those conditions for the better, then autistic self- narratives have the power to transform what it is to be autistic.’
The Loud Hands Project is a community based, multimedia publishing and creative effort by the Autistic Self Advocacy Network. It has already sourced funding via donations from the online autistic community for an anthology of autistic writing which was published last year (Bascom, 2012). This book collates previously published material alongside new articles and each author is autistic. Julia Bascom, project founder and editor of the book writes in its foreword about the how important autistic writing is to other autistic people. Without exposure to such literature autistic people can grow up feeling adrift and isolated :
‘One of the cruellest tricks our culture plays on autistic people is that it makes us strangers to ourselves. We grow up knowing we’re different, but that difference is defined for us in terms of an absence of neurotypicality, not as the presence of another equally valid way of being. We wind up internalizing a lot of hateful, damaging and inaccurate things about ourselves, and that makes it harder to know who we really are or what we really can and cannot do.’
(Bascom, 2012, p.7)
Autistic people have described the sense of community they feel from the increasing prevalence of fellow autistics’ writings. They are collaborating with an increased sense of power and strength in numbers. They challenge the rhetoric of their lives as ‘less than’. They worked together to change Google’s auto-complete options following a search of the words ‘autistic people should…’ (Heasley, 2013). They wrote and campaigned to expedite the cessation of damaging and inaccurate advertising campaigns relating to autism (Kras, 2009) (McDaid, 2009).
Autistic people writing and connecting have instigated changes that impact on other autistic people by challenging current autism awareness campaigns (Durbin-Westby, 2012). They have clamoured for a greater say in organisations that claim to speak on their behalf, gaining roles such as National Councillor of the NAS (Arnold, 2002) and in the USA, council membership of the National Council on Disability (NCD, n.d.).
The increasing body of autistic writing is also having an escalating impact on autism research. Breakey (2006) writes that ‘autistic people have been viewed as contributing useful “insights” and “experiences” into the academic arena, but they have not been sufficiently recognized in the intellectual discussions and exploration of the condition’ but that this is changing as more autistic people speak out. She says that only autistic people themselves can understand what it is to be autistic and that researchers would make more gains if they stopped focusing on the ‘outside of the condition’ (the behaviour) and instead ‘focussed on what autistic people are’.
The vast majority of autism research focuses on neurobiology, environmental effects, potential causation and genetics. According to Singh et al. (2009) basic science research accounts for 65% of grants funded in the US from 1997 to 2006, clinical research for 15% and translational research for the remaining 20%. A very small fraction of studies focussed on epidemiology or family function and services available to autistic people. Singh et al. counted 308 new, publically-funded autism projects between 2002 and 2006, only 9 of which looked at family and services.
However when the opinions of autistic people are sought, they say they want research to focus on improving their outcomes and quality of life. Silberman (2012) asked some autistic writers their views on ‘what could be done to make the world a more comfortable, respectful, and nurturing place for millions of autistic kids and adults’. One respondent, Paula C. Durbin-Westby, said that ‘Research priorities and dollars should refocus on communication needs’ and Ari Ne’eman said:
‘Research and science have always played a large role in disability policymaking, in large part due to a history of disability being viewed mainly as a public health issue. But while science can tell us much about how the world is, it falls to values to tell us how the world should be. When assessing the quality of different forms of service-provision, we should think about both efficacy and ethics.’
AASPIRE (Academic Autistic Spectrum Partnership in Research and Education, 2013) is a community-based participatory research partnership composed of health services and disability researchers, autistic self-advocates, health care providers, disability service professionals and family members. It was formed to challenge the:
‘misalignment between [autism] researchers’ priorities and those of the autistic community; a lack of inclusion of autistic individuals in the research process; use of demeaning or derogatory language and concepts; threats to study validity derived from miscommunication between researchers and participants; and the use of findings to advance agendas that opposed community values.’
(Nicolaidis et al., 2011)
Autistic people by writing and sharing their ideas are influencing the direction of autism research in other ways too. Autistic person Michelle Dawson was asked to join an autism research group after impressing principal investigator Laurent Mottron with her interest in the science and detailed knowledge of the literature (Mottron, 2011). Mottron explains that Dawson ‘has helped the research team question many of our assumptions about and approaches to autism — including the perception that it is always a problem to be solved.’
Donnellan et al. (2013) quote several autistic authors in their paper challenging the definition of autism as a triad of impairments (Wing and Gould, 1979) and call for increased recognition of the neurologically-based sensory and movement differences autistic people experience:
‘Any view of autism at this time needs to reflect the experience of self-advocates with autism and others who describe sensory and movement differences, as well as the latest in the neuroscience and child development literature. We need a research agenda that focuses on understanding and supporting autistic people and others in more respectful, personalized, and successful ways.’
Autistic writers are increasingly likely to critique research studies, especially those of interest to the mainstream media. This was demonstrated after a paper was published recently describing people who had been diagnosed with autism as children but who lost their diagnoses as they grew up (Fein et al., 2013). The study authors label these as an ‘optimal outcomes’ defined such ‘that the individual be without any significant autism symptoms and function within the normal intellectual range; however, other difficulties, such as weaknesses in executive functioning or vulnerability to anxiety and depression may still exist.’
Media reports presented this as a people ‘recovering from’ or ‘growing out of autism’ and autistic people took issue with the definition of optimal lives as being those without autism. Dawson (2009) wrote (on presentation of Fein’s data at a conference):
‘Dr Fein and her colleagues have determined the criteria for optimal outcomes in autism, and these criteria assume that autistics who remain autistic are suboptimal. Remaining autistic is an undesired, unsatisfactory, inferior, suboptimal result.’
Many researchers make value judgements about autistic people’s lives that do not correspond with how they themselves describe their experiences. It seems plausible that if more academics were to study the ever-growing body of literature created by autistic writers, there would be fewer misunderstandings and more progress on improving lives and outcomes. Even a slight shift in the priorities and funding of autism research away from causation and possible prevention of autism onto finding more effective ways to educate and support autistic people throughout the course of their lives, would lead to outcomes that could be described as truly optimal.
The increasing body of literature from autistic people willing to share their experiences will have a positive impact on service providers who base their practise on the best available evidence in supporting autistic people. In their writing autistic people promote the social model of disability and personalised approaches to support services, which influences policy and legislation and hence impacts on service providers.
Valuing People (Department of Health, 2001), a UK government White Paper on learning disability, makes proposals based on four key principles: civil rights, independence, choice and inclusion, all ideas promoted by autistic authors. The Independent Review of Autism Services in Northern Ireland (Maginnis, 2008) proposed that each Health Trust develop ASD Family Support services within their ASD specialist teams to provide ‘person centred’ advice and support to children/families and autistic individuals. Person-centred planning is based on social model principles of inclusion advocated by autistic writers.
Autistic people have been consulted at all stages of the development of the Draft Northern Ireland Autism Strategy (DHSSPS, 2012) (open to public consultation until early March 2013) and were among the membership of the Project Board established to manage and direct the development of the Strategy and Action Plan. The vision of the Autism Strategy corresponds with that in the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD, 2008) and includes participation, inclusion, respect for difference, equality of opportunity and accessibility.
The Northern Ireland Autism Adult Care Pathway (RASDN, 2012) advocates a person centred approach in which:
‘intervention, care and support –as well as the diagnostic process - will take into account individuals’ needs and preferences. Individuals with autism should have the opportunity to make informed decisions about their care and identified support needs, in partnership with their healthcare professionals.’
RASDN acknowledge that their Care Pathway cannot be fully implemented without significant investment and there are financial deficits within HSC Trusts. They intend to reconfigure service provision to better support autistic adults and say they will ‘endeavour to secure new resources where possible.’ Autistic people and their allies have lead the way in changing policy from a medical or charity based model to one of rights, participation, respect and equality and they will continue to work to ensure funding is in place to allow people to access appropriate services to make this vision a reality.
Autistic writers have challenged providers of support and services directly on how they can most effectively work with autistic clients. Lawson (2012) emphasises the importance of communication among all the agencies involved in working with an autistic individual. But as autism involves problems with communication, service providers do not always involve the autistic person when deciding what is best for them. She explains that these barriers can be overcome by using communicative technology. Finally Lawson asks that agencies encourage their staff to read and explore autism from the perspective of autistic people.
Autistic people have written about their experiences with providers of services. Many of them have shared their desire to be listened to, to have their concerns acknowledged and to be treated as individuals. They have discussed the labels often used by professionals to categorise people. ‘I Am Joe's Functioning Label’ (Harp, 2008) is a blog post eloquently demonstrating the challenges and needs that can be overlooked when a person is labelled as ‘high functioning’. In ‘Just Me’ (Sequenzia, 2012) the author describes how she can be thought of as ‘high’ or ‘low’ functioning depending on circumstances. She writes, ‘Functioning boxes are not definitions of who we are. They are simply a very narrow view of our complexities.’
These autistic writers ask that service providers and others interacting with them, avoid either minimising their talents or denying their very real impairments.
Amanda Baggs is an autistic woman with multiple chronic medical conditions who communicates via an AAC device. She is a talented and prolific writer who has covered many aspects of autism and disability such as ethics, representation and communication. She has written about the times she spent in institutions and the abuses she suffered and witnessed there. She has also written about personal care services she received in her home and the staff who provided these, detailing individual and systemic failings in her care. She describes the many ways in which support staff have used their position of privilege and power over her and others to perpetrate different types of abuse, from threatening to withdraw necessary services, infantilising adults, making decisions without consulting the person in receipt of services, disrespecting bodily autonomy and privacy to physical intimidation (Baggs, 2012). Baggs lives in the USA but the comments on her blog posts from readers all over the world attest to the universality of her experiences.
Agencies and staff members who read these accounts of how it feels to be an autistic person receiving services are likely to have a greater insight as to how they can impact on a person’s life and to have more understanding of how to use the power they hold as care providers, in ways that are respectful and enabling.
One of the most crucial services any person requires is adequate and appropriate healthcare. According to Article 25 of the UNCRPD (2008), ‘States Parties recognize that persons with disabilities have the right to the enjoyment of the highest attainable standard of health without discrimination on the basis of disability.’ Accordingly, autistic people should receive the medical care they require just like anyone else.
However, as recently as March 2013, Amanda Baggs has faced intense and sustained pressure from members of her medical team to eschew the life-saving treatment she required (Cohen-Rottenberg, 2013). Amanda wrote about these incidents on her personal blog and her story was quickly shared by people in the online autistic community, many of whom contacted the hospital to seek assurances that she would receive appropriate medical care. She has since had the necessary treatment but many other autistic people without her outreach face similar discrimination in healthcare services. This incident demonstrates how crucial autistic writers are in highlighting these situations and how much progression is still needed before autistic people are treated as equals.
As the diagnostic criteria for autism have been widened and more people are diagnosed with the condition and with the near ubiquity of the internet, there has in recent years been a surge in the numbers of autistic people writing about their lives. The body of literature these people create continues to grow each year and the scope of its influence increases correspondingly. Without this writing we would know far less about many aspects of life as an autistic person. Other autistic people would not have the sense of community and belonging these writings have provided. Many of the achievements the writers have worked for would have been forfeited. Autism researchers and service providers in particular still have much to learn from the writings of autistic people.
As the dominant narrative shifts from the impact of autism on parents to those who are the real experts on the autistic experience, the focus will shift into greater acceptance, understanding and ways to support and enable autistic people. Autistic peoples’ writings will continue to transform and impact on all those in the autism community.
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