Advocacy for autism treatment
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Advocacy for autism treatment encourages continual research into the causes of autism, with the primary goal of finding a way to prevent or cure autism. This is a subset of the medical model of disability in general. The model advocates a variety of goals including increased awareness of autism prevalence, earlier and more accessible diagnosis, elimination of autistic behaviors through therapies such as applied behavior analysis, identification of environmental factors that may cause autism in infancy, and identification of a genetic marker to allow testing for autism in utero. One argument supporting a need for treatment is that autism occurs with the same incidence throughout the world.
Advocates for the medical model believe that autism is a disorder caused by genetic defects or environmental harm, that the value of talents attributed to autism does not outweigh the deficits, and that most autistic people would be better off if they were not autistic. For instance, then-president Liz Feld of Autism Speaks stated that one-third of people with autism also have a seizure disorder, half suffer serious digestive complications, 49 percent wander, and more than 30 percent are nonverbal.
Autism is defined in the DSM-IV-TR as exhibiting at least six symptoms total, including at least two symptoms of qualitative impairment in social interaction, at least one symptom of qualitative impairment in communication, and at least one symptom of restricted and repetitive behavior. Sample symptoms include lack of social or emotional reciprocity, stereotyped and repetitive use of language or idiosyncratic language, and persistent preoccupation with parts of objects. Onset must be prior to age three years, with delays or abnormal functioning in either social interaction, language as used in social communication, or symbolic or imaginative play. The disturbance must not be better accounted for by Rett syndrome or childhood disintegrative disorder.
The medical model has been the most popular stance on autism ever since the condition was identified by Leo Kanner and Hans Asperger in 1943. Researchers at the time believed that autism was similar to schizophrenia but with the patients being more self-involved.
In 1965, the National Society for Autistic Children, later renamed the Autism Society of America, was founded by Bernard Rimland and Ruth C. Sullivan, along with a small group of other parents. The Autism Society does not advocate explicitly to cure autism.
In 1995, the Autism Research Institute (ARI) began hosting its annual Defeat Autism Now! (DAN!) conference to discuss the latest developments in research. Beginning with the 2011 conference, ARI renamed it the ARI conference and suspended the list of DAN! doctors.
In 2005, Autism Speaks was founded by Bob Wright and Suzanne Wright, a year after their grandson Christian was diagnosed as autistic. Autism Speaks has since become the most recognized autism-related organization worldwide.
Current groups promoting Autism treatments
- Athletes Against Autism is an association of athletes founded by three NHL players, which leverages the celebrity status of athletes to promote awareness and fundraising.
- Autism Research Institute (ARI) is an information resource advocating various methods of autism treatment, some of which have been medically discredited. ARI hosted an annual conference called Defeat Autism Now! between 1995 and 2011.
- Autism Speaks is an organization dedicated to awareness, research, and public policy advocacy. Autism Speaks has merged with the National Alliance for Autism Research and with Cure Autism Now.
- Center for Autism and Related Disorders (CARD) is a therapy service that primarily provides families with applied behavior analysis.
- Autism Science Foundation is a non-profit organization that supports research into autism.
- National Council on Severe Autism is a non-profit organization that pursues recognition, policy and solutions for individuals, families and caregivers affected by severe forms of autism and related disorders.
Events and activities
- In 2002, Autism Awareness Campaign UK initiated Autism Sunday, an international day of prayer observed on the second Sunday of February.
- April is designated as Autism Awareness Month (called Autism Acceptance Month in the autism rights movement) to promote media coverage and fundraising for autism-related organizations. In 2008, a United Nations General Assembly resolution recognized April 2 as World Autism Awareness Day.
- In 2010, Autism Speaks launched Light It Up Blue, an awareness and fundraising campaign urging homeowners and businesses to replace their light bulbs with specialty blue light bulbs on April 2. Autism Speaks also benefits from blue autism- and puzzle-coded merchandise year-round.
Cure and prevention
The pro-cure perspective is a view of autism as a disorder characterized by various impairments, mostly in communication and social interaction. Although positive traits such as savant syndrome may be recognized, they are not seen as outweighing the negatives. Pro-cure organizations generally favor the medical model of disability with regards to autism. They believe that the atypical behaviors of autistic individuals are a detriment to those individuals' social and professional success, and should therefore be reduced or eliminated through therapy.
Autism Speaks co-founder Suzanne Wright published a "Call for Action" at the time of the organization's first national policy summit in Washington, D.C., explaining the urgency of what she called the autism crisis. In this essay, she equates children being autistic to being "missing" and "gravely ill", and details the exhausting experiences of their parents:
|“||Each day across this country, those three million moms, dads and other care-takers I mentioned wake to the sounds of their son or daughter bounding through the house. That is - if they aren’t already awake. Truth be told, many of them barely sleep—or when they do – they somehow sleep with one ear towards their child’s room—always waiting. Wondering what they will get into next. Will they try to escape? Hurt themselves? Strip off their clothes? Climb the furniture? Raid the refrigerator? Sometimes – the silence is worse.
These families are not living.
They are existing. Breathing – yes. Eating – yes. Sleeping- maybe. Working- most definitely - 24/7.
This is autism.
National Council for Severe Autism co-founder Jill Escher stated that understanding severe autism is important in getting families the help they need:
|“||Autism is often romanticized and sugar-coated in the media and social media. In contrast, our efforts will be guided by pragmatic realities. For countless families devoted to the well being of their disabled loved ones, the daily challenges can be overwhelming, and the prospects for the future extremely bleak. We will work to increase capacity and a range of new options for this population.||”|
Awareness campaigns by various organizations draw attention to the prevalence of autism, estimated by the year 2012 as 1 in 68 individuals (1 in 42 males, 1 in 189 females) by the United States Centers for Disease Control and Prevention (CDC). This figure has risen from the estimated 1 in 150 in the year 2000. The prevalence statistic is used to describe the scope and size of the problem, and the increase over time is used to frame the issue as urgent. Some organizations and individuals even call it the autism epidemic. Awareness campaigns educate people not only about the prevalence of autism but also how it is characterized. Almost every autism-related organization has a flyer or a section of their website describing what autism is, in a way that supports the organization's point of view. Descriptions used by the medical model are generally based on the facts and language used in medical journals.
Autism is classified as a disorder in the Diagnostic and Statistical Manual of Mental Disorders and International Statistical Classification of Diseases and Related Health Problems. Attempts have been made to place a figure on the financial cost of autism, addressed to both scholarly and popular audiences.
Activists like Jim Sinclair and Donna Williams and organizations such as Aspies For Freedom and the Autistic Self Advocacy Network, contend that autism is not a disorder, but a normal variant within the neurological diversity of the human genome. Struggles faced by autistic people are attributed to discrimination rather than deficiencies. Proponents of the anti-cure perspective believe that quirks and uniqueness of autistic individuals should be accepted and that efforts to eliminate autism should not be compared, for example, to curing cancer but instead to the antiquated notion of curing left-handedness. Therapies that attempt to restrict autistic behaviors, particularly applied behavior analysis (ABA), have been challenged on ethical grounds. Autism rights activists argue that ABA therapy and restriction of stimming "and other autistic coping mechanisms" are mentally harmful, that aversion therapy and the use of restraints are physically harmful, and that alternative treatments like chelation are dangerous. Michelle Dawson, a Canadian autism self-advocate, testified in court against government funding of ABA therapy. An autistic person named Jane Meyerding criticized therapy which attempts to remove autistic behaviors because she says that the behaviors that the therapy tries to remove are attempts to communicate.
- Ritvo, ER; Freeman, BJ (April 1984). "A medical model of autism: etiology, pathology and treatment". Pediatric annals. 13 (4): 298–305. PMID 6610163. Retrieved 6 June 2019.
- Feld, Liz (25 August 2015). "A call for unity". Autism Speaks. Archived from the original on 2018-06-15. Retrieved 10 December 2016.
- American Psychiatric Association. Diagnostic and statistical manual of mental disorders: DSM-IV. 4 ed. Washington, DC: American Psychiatric Association; 2000. ISBN 978-0-89042-025-6. OCLC 768475353. Diagnostic criteria for 299.00 Autistic Disorder.
- "Autism Society history" (PDF). Autism Society. 2011. Archived from the original (PDF) on 2014-08-09.
- Leitch, Kevin (2011-01-02). "2011 – The Last Year For ARI's DAN! Doctors". Left Brain Right Brain.
- Gross J, Strom S (2007-06-18). "Autism debate strains a family and its charity". New York Times. Archived from the original on April 16, 2009. Retrieved 2007-10-09.
- "Third Committee calls on Assembly to designate 2 April World Autism Day" (Press release). UN General Assembly. 1 November 2007. Retrieved 29 October 2009.
- "General Assembly Adopts Landmark Text Calling for Moratorium on Death Penalty, Adopts 54 Resolutions, 12 Decisions Recommended by Third Committee" (Press release). UN General Assembly. 18 December 2007. Retrieved 29 October 2009.
- United Nations General Assembly Session 62 Resolution 139. A/RES/62/139 page 2. 18 December 2007. Retrieved 29 October 2009.
- United Nations General Assembly Session 62 Verbatim Report 76. A/62/PV.76 18 December 2007. Retrieved 29 October 2009.
- Wright, Suzanne (2013-11-11). "Autism Speaks to Washington - A Call for Action". Autism Speaks. Archived from the original on 2014-07-15. Retrieved 2014-07-15.
- "New Advocacy Group Seeks Realistic Solutions for Severely Disabled Autistics". National Council on Severe Autism. Retrieved 7 June 2019.
- "Autism Spectrum Disorder Data & Statistics". Centers for Disease Control and Prevention. 2014-03-24. Archived from the original on 2014-04-18.
- "Autism Epidemic". The Autism Epidemic. Archived from the original on 2014-07-24. Retrieved 2014-07-15.
- John L R Rubenstein; Moldin, Steven O. (2006). Understanding autism: from basic neuroscience to treatment. Boca Raton: Taylor & Frances. ISBN 0-8493-2732-6.
- "Autism Clock". fightingautism.org. Archived from the original on 2007-07-21. Retrieved 2008-01-04.
- Harmon, Amy (2004-12-20). "How About Not 'Curing' Us, Some Autistics Are Pleading". The New York Times. Archived from the original on December 2, 2011. Retrieved 2007-11-07.
- "In Support of Michelle Dawson and Her Work". Autistics.org. Archived from the original on 2012-02-15. Retrieved 2012-03-21.
- Mission Statement. Aspies for Freedom. Retrieved on 2008-11-24.
- Athletes Against Autism homepage
- Autism Research Institute
- Autism Speaks
- Center for Autism and Related Disorders
- Talk About Curing Autism
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