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.’
(Arnold,
n.d.)
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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