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Donna Leanne Williams, also known by her married name Donna Leanne Samuel (born Donna Keene; 12 October 1963 – 22 April 2017), was an Australian writer, artist, singer-songwriter, screenwriter, and sculptor. In 1965, aged two, Williams was assessed as "
psychotic Psychosis is a condition of the mind that results in difficulties determining what is real and what is not real. Symptoms may include delusions and hallucinations, among other features. Additional symptoms are incoherent speech and behavior t ...
". During the rest of her childhood, she was tested multiple times for deafness and labelled as "disturbed". In 1991, she was diagnosed as
autistic The autism spectrum, often referred to as just autism or in the context of a professional diagnosis autism spectrum disorder (ASD) or autism spectrum condition (ASC), is a neurodevelopmental condition (or conditions) characterized by difficulti ...
and also underwent treatment for gut, immune system and sensory perceptual disorders. She wrote four memoirs: '' Nobody Nowhere: The Extraordinary Autobiography of an Autistic Girl'' (1992), '' Somebody Somewhere: Breaking Free from the World of Autism'' (1994), '' Like Colour to the Blind: Soul Searching and Soul Finding'' (1998) and ''Everyday Heaven: Journeys Beyond the Stereotypes of Autism'' (2004) – and released two albums, ''Nobody Nowhere'' and ''Mutation''. She was the subject of several TV documentaries during the '90s. Williams wrote textbooks on the
autism spectrum The autism spectrum, often referred to as just autism or in the context of a professional diagnosis autism spectrum disorder (ASD) or autism spectrum condition (ASC), is a neurodevelopmental condition (or conditions) characterized by difficulti ...
and was a qualified teacher, international public speaker and autism consultant. Williams died of cancer in April 2017.


Early life and education

Donna Leanne Williams was born Donna Keene in October 1963. She grew up in Melbourne with an older brother, James, and a younger brother, Tom Williams (the street artist Duel; born 1969). According to Williams, her earliest memories included "rubbing her eyes furiously to lose herself in 'bright spots of fluffy color', which she found a soothing refuge against the 'intrusive gabble' of the human world around her". Her father, Ellis John Keene, later known as Jack Williams (1936–1995), was bipolar and aloof, while her mother was an alcoholic who was physically and emotionally abusive. In 1965, at the age of two, Williams was assessed as a psychotic infant; subsequently, throughout her childhood, she was tested multiple times for deafness and labelled as "disturbed". By the age of nine, she had developed two alternate personalities: "Willie", her "rebellious, disruptive, and bad-mannered side" and "Carol", the "kind, polite, socially acceptable child". That year, she was also diagnosed with various dietary conditions including "
milk allergies Milk allergy is an adverse immune reaction to one or more proteins in cow's milk. Among the possible symptoms is anaphylaxis, a potentially life-threatening condition that requires treatment with epinephrine, among other measures. However, sy ...
, dairy nd gluten intolerances and
salicylate Salicylic acid is an organic compound with the formula HOC6H4CO2H. A colorless, bitter-tasting solid, it is a precursor to and a metabolite of aspirin (acetylsalicylic acid). It is a plant hormone, and has been listed by the EPA Toxic Substance ...
intolerance" and was placed on a multivitamin and
zinc Zinc is a chemical element with the symbol Zn and atomic number 30. Zinc is a slightly brittle metal at room temperature and has a shiny-greyish appearance when oxidation is removed. It is the first element in group 12 (IIB) of the periodi ...
regime. At fifteen, Williams left home and worked in various jobs but struggled to support herself. At times she was homeless, passing from boyfriend to boyfriend while suffering "gross cruelty and domestic prostitution in relationships with men". With the help of a psychiatric social worker, Williams finished secondary education and enrolled in tertiary studies. From 1982, Williams started studying at
La Trobe University La Trobe University is a public research university based in Melbourne, Victoria, Australia. Its main campus is located in the suburb of Bundoora. The university was established in 1964, becoming the third university in the state of Victoria a ...
and eventually graduated with a Bachelor of Arts and Diploma of Education in 1990.


Autism

In 1991, Williams was diagnosed with autism by Lawrence Bartak, a specialist at
Monash Medical Centre Monash Medical Centre (MMC) is a teaching hospital in Melbourne, Australia. It provides specialist tertiary-level healthcare to the Melbourne's south-east. Monash Medical Centre is part of Monash Health, the largest public health service in Vic ...
and a senior lecturer in
psychology Psychology is the scientific study of mind and behavior. Psychology includes the study of conscious and unconscious phenomena, including feelings and thoughts. It is an academic discipline of immense scope, crossing the boundaries between ...
at the associated
Monash University Monash University () is a public research university based in Melbourne, Victoria, Australia. Named for prominent World War I general Sir John Monash, it was founded in 1958 and is the second oldest university in the state. The university h ...
. Bartak later recalled the " illiamsdisplayed all the main features of autism when I met her, including one she wouldn't have known about ... The fact that she was apparently sociable and interacting with people doesn't mean she didn't have some type of disorder". Bartak helped Williams "begin building bridges instead of walls between worlds". In July 1996, doubts about Williams' condition were aired on
Radio National Radio National, known on-air as RN, is an Australia-wide public service broadcasting radio network run by the Australian Broadcasting Corporation (ABC). From 1947 until 1985, the network was known as ABC Radio 2. History 1937: Predecessors a ...
's ''The Health Report'' and by ''
The Australian ''The Australian'', with its Saturday edition, ''The Weekend Australian'', is a broadsheet newspaper published by News Corp Australia since 14 July 1964.Bruns, Axel. "3.1. The active audience: Transforming journalism from gatekeeping to gatew ...
'' newspaper. The claims of "faking it" were denied by both Williams and Bartak. In February 2005, David Smukler, writing in the American Association on Intellectual and Developmental Disabilities' journal ''Mental Retardation'', noted that back in the mid-1990s some sceptics had a poorly defined understanding of the autism spectrum: "...autistic people such as Donna Williams and
Temple Grandin Mary Temple Grandin (born August 29, 1947) is an American academic and animal behaviorist. She is a prominent proponent for the humane treatment of livestock for slaughter and the author of more than 60 scientific papers on animal behavior. Gra ...
started to publish first-person accounts that described their lives as autistic people living in an often-inhospitable nonautistic world. Many readers of these early accounts questioned whether or not the authors were ''really'' autistic. The assumption underlying such responses is that autism is so incapacitating that Williams or Grandin could not be autistic and still write with such insight and sensitivity. When their books first appeared, autistic authors were characterized either as frauds or exceptions". Smukler concluded: "Today, Williams' and Grandin's 'credentials' are rarely challenged. Rather than being doubted, they are more likely to be commended for offering us an 'inside out' view of autism".


Career

By 1992, Williams was a qualified teacher. Note: Quoted in Amazon.com review. Subsequently, she became an international public speaker and an autism consultant. In 2002, she joined the United Kingdom's Medical Research Council's review into the causes of autism, where she was appointed to the lay-person's panel.


Work


Books

In 1992, Williams published her first book, an autobiographical account titled '' Nobody Nowhere: The Extraordinary Autobiography of an Autistic Girl'' ( Doubleday, London).. It was an international best seller including spending fifteen weeks on ''The New York Times'' Best Seller list for adult non-fiction in 1993. It was short-listed for the
New South Wales Premier's Literary Awards The New South Wales Premier's Literary Awards, also known as the NSW Premier's Literary Awards, were first awarded in 1979. They are among the richest literary awards in Australia. Notable prizes include the Christina Stead Prize for Fiction, t ...
for non-fiction in 1992. According to '' Kirkus Reviews'' the book enabled people associated with autistic individuals, to "understand more clearly what those unresponsive 'dead eyes' see". While Daniel Goleman of ''
The New York Times ''The New York Times'' (''the Times'', ''NYT'', or the Gray Lady) is a daily newspaper based in New York City with a worldwide readership reported in 2020 to comprise a declining 840,000 paid print subscribers, and a growing 6 million paid d ...
'' described how Williams "originally wrote it as a series of notes to herself, to help her make sense of her own chaotic world. She planned to burn her journal until a therapist helped her see the value in sharing it". Her second autobiography, '' Somebody Somewhere: Breaking Free from the World of Autism'', appeared in 1994. Marguerite Mroz of '' Library Journal'' noted that Williams describes getting the first book published, including " r extraordinary and painful growth as she completes her education, continues psychiatric treatment, experiences the unwelcome publicity brought about by the publication of ''Nobody Nowhere''". ''Kirkus Review'' found Williams had become "more emotionally vulnerable than ever, unprotected by the ritualistic noises and movements typical of autism and determined not to call on the false selves that helped her function in the world 'out there'". Later autobiographical works include '' Like Colour to the Blind: Soul Searching and Soul Finding'' (1996), and ''Everyday Heaven: Journeys Beyond the Stereotypes of Autism'' (2004). Emily Golson in Williams' entry in ''Encyclopedia of Women's Autobiography'' (2005) finds that " erwriting mirrors the convolutions of her thought processes: disjointed, sometimes rambling, often filled with images that convey a jumble of colors, sounds and attitudes". Williams wrote several non-fiction books on intellectual and developmental conditions, especially on the
autism spectrum The autism spectrum, often referred to as just autism or in the context of a professional diagnosis autism spectrum disorder (ASD) or autism spectrum condition (ASC), is a neurodevelopmental condition (or conditions) characterized by difficulti ...
''Autism – an Inside-out Approach: An Innovative Look at the Mechanics of Autism and Its Developmental Cousins'' (1996), ''Autism and Sensing: The Unlost Instinct'' (1998), ''Exposure Anxiety - The Invisible Cage: An Exploration of Self-Protection Responses in the Autism Spectrum'' (15 September 2002), and ''The Jumbled Jigsaw: An Insider's Approach to the Treatment of Autistic Spectrum "Fruit Salads"'' (2006). Her first collection of poetry and prose, ''Not Just Anything: A Collection of Thoughts on Paper'' (2004), was published by
Jessica Kingsley Publishers Jessica Kingsley Publishers (JKP) is an independent, multinational publishing house headquartered in London, and founded in 1987 by Jessica Kingsley. History Early on JKP published books pertaining to the social sciences and behavioural scien ...
. A second collection, ''Weirdos Like Me'', appeared in September 2009.


Television documentaries

Williams was the subject of several TV documentaries. "My Experience with Autism, Emotion and Behavior" (1993), an episode, on ''
Eye to Eye with Connie Chung ''Eye to Eye With Connie Chung'' is an American news show that aired on CBS from 1993 to 1995. The show, hosted by Connie Chung as a second project from her time as co-anchoring the ''CBS Evening News'' with Dan Rather, she hosted and would often ...
'' was broadcast in the United States. Beth Fouse and Maria Wheeler describe Williams' interview and her mode of communication in their book, ''A Treasure Chest of Behavioral Strategies for Individuals with Autism'' (1997). Williams had "difficulties in processing incoming information. She needed to listen ''or'' look. She could not use auditory and visual channels at the same time". On ''Jam Jar'' (1995), by Fresh Film in association with BBC Four, which aired in the UK, Williams provided her audience with a greater depth of understanding of autism. The documentary provided Joe Geraci with Williams' "provocative argument about academics coming to some kind of understanding of autism" where she described the 'inside-out' world, " n autistichas his own system, and it's not an infantile version of he non-autistic person'ssystem; they haven't learned his system". ''Yokosho Watashi No Sekai E "Jiheisho" Donna Williams'' (1995), was broadcast by
NHK , also known as NHK, is a Japanese public broadcaster. NHK, which has always been known by this romanized initialism in Japanese, is a statutory corporation funded by viewers' payments of a television license fee. NHK operates two terrestr ...
TV in Japan. ''Krankheit als Schicksal'' (English: ''Illness as fate''), was filmed in 1995, by
Hamburg (male), (female) en, Hamburger(s), Hamburgian(s) , timezone1 = Central (CET) , utc_offset1 = +1 , timezone1_DST = Central (CEST) , utc_offset1_DST = +2 , postal ...
's Spiegel TV, and was aired on 25 January 1997 in Germany. It is titled ''Dann Verstehe Ich Auch Nur Bla, Bla, Bla'' (English: ''Then I Only Understood Too Much Bla, Bla, Bla''). In September 2010, Orlai Produkciós Iroda of
Hungary Hungary ( hu, Magyarország ) is a landlocked country in Central Europe. Spanning of the Pannonian Basin, Carpathian Basin, it is bordered by Slovakia to the north, Ukraine to the northeast, Romania to the east and southeast, Serbia to the ...
produced a
monodrama A monodrama is a theatrical or operatic piece played by a single actor or singer, usually portraying one character. In opera In opera, a monodrama was originally a melodrama with one role such as Jean-Jacques Rousseau's '' Pygmalion'', which w ...
, ''Nemsenkilény, monológ nemmindegyembereknek'' ("Not a nobody creature") presented by Börcsök Enikő, from a book by autistic author, Henriett Seth F. which appeared in theatres and on TV. The script contains quotations from ''Nobody Nowhere'' along with Birger Sellin's ''Don't want to Be Inside Me Anymore'', and
Mark Haddon Mark Haddon (born 28 October 1962) is an English novelist, best known for '' The Curious Incident of the Dog in the Night-Time'' (2003). He won the Whitbread Award, the Dolly Gray Children's Literature Award, Guardian Prize, and a Commonwealth W ...
's ''The Curious Incident of the Dog in the Night-time''.


Music and art

Williams' debut album, titled ''Nobody Nowhere'' after her first autobiography, was released in 2000; it is a collaboration with
Paul Farrer Paul Myles Farrer (born 1973) is a British composer known for his work in film and television. He was born in 1973 in Worcester, England. In a career spanning more than 30 years he has composed music for some of the biggest programmes on Bri ...
. Two tracks, "Sometimes" and "Beyond the When", feature in the 2000
Tokyo Broadcasting System Television JORX-DTV, branded as is the flagship station of the Japan News Network (JNN), owned-and-operated by , a subsidiary of JNN's owner, TBS Holdings. It operates in the Kantō region and broadcasts its content nationally through TBS-JNN Network ...
series ''Things You Taught Me''. The 12-part series follows the life of an autistic woman developing her human interaction skills. In July 2005, she followed up ''Nobody Nowhere'' with a second album titled ''Mutation''. It is a collaboration with Akash, an Australian composer, producer and arranger. Both albums feature music and lyrics by Williams, with ''Mutation'' including spoken word poetry in addition to music. Williams was a self-taught painter, beginning in adulthood. She was also a sculptor and completed life-sized sculptures.


Personal life

Williams was the older sister of mural and graffiti artist "Duel" (Tom Williams, born 1969). In 1993, Williams married Ian. They divorced after two years. Their relationship is described in ''Somebody Somewhere: Breaking Free from the World of Autism'' and ''Like Colour to the Blind: Soul Searching and Soul Finding''; and he appeared in television documentaries with her. On 9 December 2000, while living in England, Williams married Chris Samuel. In 2002, the couple moved to her native Australia. Williams and Samuel created the auties.org website, for people on the autistic spectrum who are seeking to work towards self-employment. Williams wrote about him in ''Everyday Heaven''.


Cancer

Williams had a "strong family history of cancer". In 2011 she was diagnosed with breast cancer. The cancer, which was terminal, metastasized and "spread throughout the liver". She chose to spend her last days in
palliative care Palliative care (derived from the Latin root , or 'to cloak') is an interdisciplinary medical caregiving approach aimed at optimizing quality of life and mitigating suffering among people with serious, complex, and often terminal illnesses. Wit ...
. She urged her state premier to pass Dying with Dignity legislation.


References


External links

* * {{DEFAULTSORT:Williams, Donna 1963 births 2017 deaths Artists with autism Artists from Melbourne Australian bloggers Australian women bloggers Australian memoirists Australian singer-songwriters Autism activists Autism researchers Musicians from Melbourne Outsider artists Deaths from cancer Australian women memoirists Women outsider artists Writers from Melbourne Australian women singer-songwriters 21st-century memoirists