- 1799: French physician Jean-Marc Gaspard Itard reports on Victor, the "Wild Boy of Aveyron," a child with social withdrawal and language delays, traits that later align with autism.
- 1908: Swiss psychiatrist Eugen Bleuler coins the term "autism" (from the Greek "autos," meaning self) to describe social withdrawal in individuals with schizophrenia. This sets the stage for early misconceptions, linking autism to schizophrenia for decades.
- 1943: Leo Kanner, an Austrian-American psychiatrist, publishes Autistic Disturbances of Affective Contact, describing 11 children with distinct traits like social withdrawal, communication issues, and repetitive behaviors. He coins the term "early infantile autism" and believes it is a lifelong condition caused by an innate inability to form affective contact. Kanner also suggests a biological basis but notes that parenting styles could contribute, which lays the groundwork for later misguided theories around 'refrigerator moms'
- 1944: Austrian pediatrician Hans Asperger publishes a paper on children with behaviors similar to Kanner’s description but with stronger verbal abilities. Asperger describes the condition as "autistic psychopathy", later known as Asperger syndrome.
- 1947: Kanner notes that many autistic children have above-average memory and specific areas of talent, observing what would later be understood as savant syndrome.
1950s: Psychoanalytic Theories and Misunderstandings
- 1950s. Institutionalization is common for autistic children (and real life institutions don't look the high end resort-like setting shown in RainMan)
- 1950s: Bruno Bettelheim promotes the "refrigerator mother" theory, blaming emotionally distant mothers for causing autism. This theory, grounded in psychoanalysis, dominates for decades and contributes to a stigma around autism, despite later being debunked. In 1967, Bettelheim publishes The Empty Fortress, further expanding on his theory by comparing autistic children to prisoners in emotional isolation, a concept later widely discredited for its lack of scientific basis.
- 1956: Researcher Paul Eugen Bleuler, who first coined "autism" to describe withdrawal in schizophrenia, influences early confusion between autism and schizophrenia. Autism is often misdiagnosed as childhood schizophrenia, or emotional disturbance as there is little understanding of its distinct nature.
1960 - 70s: The Rise of Advocacy and Early Research Shifts
- 1964: Temple Grandin, who later becomes one of the most famous autistic advocates, is diagnosed with autism at age 16. Her later work will help shed light on sensory sensitivities in autism and emphasize the potential of autistic individuals.
- 1964: Psychologist Bernard Rimland, the father of an autistic child, publishes Infantile Autism, which challenges the refrigerator mother theory and argues for a biological cause of autism. Rimland's work is pivotal in shifting the focus toward neurological and genetic research.
- 1964: Civil Rights Bill Bypasses People with Disabilities. While the Act helps end discrimination against racial minority groups and women in the workplace, it does not make provision for people with disabilities. The difference is that when considering civil rights for disabilities you need not just a seat on the bus but a way to get into that bus.
- 1965: Rimland along with Ruth Sullivan found the Autism Society of America (ASA) one of the first national organizations in the US dedicated to autism advocacy, supporting families and promoting research.
- 1967: "Autism: The Invisible Wall", a television documentary in the UK, helps bring autism to public attention by focusing on the challenges and misunderstood nature of autistic individuals.
- 1967: ICD-8 (Eighth Revision). The International Classification of Diseases released by Word Health Organization includes childhood psychosis and other related terms, but autism itself is not yet a distinct diagnostic category. Autism is often conflated with schizophrenia or broader childhood psychotic disorders.
- 1974: Last of the Ugly Laws Repealed.
- 1975: The US passes the Education for All Handicapped Children Act (EAHCA), which mandates free public education for children with disabilities, including autism. This later evolves into the Individuals with Disabilities Education Act (IDEA) in 1990.
- 1977: Twin studies by Folstein and Rutter provide the first strong evidence for a genetic component to autism, marking a major shift away from psychoanalytic theories. This study reveals that autism has a higher concordance rate in identical twins than in fraternal twins.
- 1977: ICD-9 (Ninth Revision) introduces Infantile Autism under the category of pervasive developmental disorders (PDD). This marks the first time autism is officially recognized as a separate diagnostic entity in the ICD system. The criteria are still relatively broad, and autism is seen as a disorder affecting early childhood development.
1980s: Diagnostic Shifts and Broader Recognition
- 1980: The DSM-III officially recognizes autism as a distinct diagnosis, separate from childhood schizophrenia, under the term "Infantile Autism". This formalizes autism’s recognition within psychiatry.
- 1981: British psychiatrist Lorna Wing introduces the term Autism Spectrum Disorder (ASD), emphasizing the broad range of abilities and challenges in autistic individuals. She also popularizes Asperger syndrome in the English-speaking world.
- 1985: The diagnostic ratio of autism is estimated to be 4 to 5 in every 10,000 children. This reflects limited awareness and more restrictive diagnostic criteria.
- 1987: The DSM-III-R revises the criteria for autism, leading to increased diagnoses.
- 1987: Behavioral psychologist Ivar Lovaas publishes results of Applied Behavioral Analysis (ABA) in improving behaviors in some autistic children. ABA remains controversial today due to criticisms from the autistic community about its social validity and ethics of behavior modification and its use of aversives like shocks to achieve the higher success results. Shocks continue to be used in centers like the JRC (Judge Rotenberg Center) even today.
- 1988: The film Rain Man, starring Dustin Hoffman as an autistic savant, brings autism into the cultural spotlight, although it reinforces stereotypes of autism as tied to intellectual disability or savant syndrome.
1990s: Expanding the Spectrum and Advocacy Growth
- 1990: Americans with Disabilities Act signed into law by Pres George HW Bush.
- 1990: The Individuals with Disabilities Education Act (IDEA) reinforces the right to free public education and Individualized Education Programs (IEPs) for students with autism, helping ensure their integration into the educational system.
- 1991: Autism is officially added as a special education category under IDEA, securing services for autistic students.
- 1993: The National Autistic Society (NAS) in the UK launches "Autism Awareness Year", one of the first large-scale efforts to raise public awareness about autism.
- 1993: ICD-10 (Tenth Revision) significantly revises the classification of autism. Autism Spectrum Disorders (ASD) are grouped under Pervasive Developmental Disorders (PDD). Subtypes include Childhood Autism, Atypical Autism, Asperger’s Syndrome, Rett Syndrome, and Pervasive Developmental Disorder-Not Otherwise Specified (PDD-NOS). ICD-10’s structure allows for a more nuanced understanding of autism and its variations, with greater distinction between different developmental disorders.
- 1994: The DSM-IV expands the definition of autism to include Asperger syndrome and Pervasive Developmental Disorder-Not Otherwise Specified (PDD-NOS), marking a significant shift in recognizing autism as a spectrum. The diagnostic ratio rises to about 1 in 1,000 children.
- 1995: The Yale Child Study Center launches the Yale Early Social Cognition Program, pioneering research on autism's social cognition and brain development.
- 1997: Lorna Wing introduces the "triad of impairments": social interaction, communication, and flexibility of thought, which becomes a core diagnostic feature of autism. This framework helped shape diagnostic criteria and broadened the understanding of autism as a spectrum.
- 1997: The UN's Standard Rules on the Equalization of Opportunities for Persons with Disabilities (adopted in 1993) begins to include autism under broader disability rights frameworks, encouraging global awareness and inclusion
- 1998: A study by Andrew Wakefield links the MMR vaccine to autism leads to much controversy.
- 1999: The Treatment and Education of Autistic and related Communication-handicapped Children (TEACCH) program gains recognition for early intervention and structured teaching.
- 1999: Olmstead Act requires deinstitutionalization.
2000s: Rise of Neurodiversity and Genetic Research
- 2000: Autism Speaks is founded, becoming one of the largest autism advocacy organizations, though it faces criticism from autistic self-advocates for its earlier messaging on curing autism rather than supporting neurodiversity.
- 2001: The United Nations establishes World Autism Awareness Day, observed annually on April 2, raising global awareness about autism.
- 2002: The Autism Genome Project is launched and is one of the largest international efforts to study the genetic basis of autism
- 2003: Autism Network International (ANI) starts hosting Autreat, a retreat for autistic individuals designed by autistic people. Autreat becomes a symbol of the burgeoning autistic self-advocacy movement.
- 2005: Beijing Stars and Rain, China’s first non-governmental organization for autism, begins gaining international attention for promoting autism education and parent training programs. The organization becomes a model for other regions in China, raising awareness in a country with limited services for autism.
- 2001-2007: Autism diagnosis rates surge. By 2007, the CDC reports autism prevalence at 1 in 150 children. Improved diagnostic criteria and growing awareness contribute to these higher rates.
- 2006: The Autism Self-Advocacy Network (ASAN) is founded by Ari Ne'eman advocating for autistic individuals to have a voice in policy and research decisions.
- 2006: The documentary "Autism: The Musical" is released, portraying the lives of five autistic children and their participation in a musical production, showing the diversity of the autism spectrum and challenging preconceived notions.
- 2006: The Combating Autism Act (CAA) is signed into law by President George W. Bush. It authorizes increased federal funding for autism research, early detection, intervention, and services. It also establishes the Interagency Autism Coordinating Committee (IACC) to coordinate federal efforts related to autism and services. This marked the first formal effort by the US government to streamline and prioritize autism research across various agencies.
- 2007: The Autism Genome Project publishes its first major findings identifying several genetic markers linked to autism, though no single "autism gene" is found. Early findings reveal the complexity of autism, linked to hundreds of different genes, each contributing in small ways.
- 2007: The UN General Assembly designates April 2 as World Autism Awareness Day (WAAD), increasing global recognition and advocacy efforts.
- 2008: The Convention on the Rights of Persons with Disabilities (UNCRPD) is adopted by the United Nations, affirming the rights of individuals with disabilities, including autistic individuals, to equal access in education, employment, and healthcare.
- 2008: The WHO supports the UNCRPD, pushing for global health strategies that include autism within the broader disability rights movement.
- 2009: Latin America takes steps towards developing autism strategies with the creation of Red Espectro Autista Latinoamerica (REAL), a regional network advocating for autism diagnosis, intervention, and inclusion throughout Latin America. Countries such as Argentina, Brazil, and Mexico begin improving public understanding and launching pilot autism support programs.
- 2009: The IACC releases its first Strategic Plan for Autism Research, outlining key priorities for autism research. It sets goals to improve early identification, better understand autism’s biology, and develop new interventions and services. This plan becomes a guiding document for federal funding and research efforts.
- 2009: Rosa's Law enacted. Pres Obama signs legislation that replaces the term "Mental Retardation" with term "Intellectual Disability". The Law is named for 9 year old Rosa Marcellino, a young advocate with Down's Syndrome
2010s: Scientific Advancements and Cultural Shifts
- 2011: Ari Ne'eman becomes the first openly autistic person appointed to the US National Council on Disability, a milestone in autistic representation in federal policymaking.
- 2011: The Combating Autism Reauthorization Act (CARA) extends the provisions of the original act, continuing federal funding for autism research, services, and early interventions. It emphasizes improving services for autistic children and adolescents
- 2011: The IACC updates its Strategic Plan with a greater focus on lifespan issues, including services for autistic adults, employment, and quality of life. The update also emphasizes the need for research into co-occurring conditions such as epilepsy, gastrointestinal issues, and mental health disorders in autistic individuals.
- 2012: The "Autism at Work" initiative is launched by major corporations like SAP, Microsoft, and JP Morgan Chase, focusing on hiring autistic individuals for their unique strengths, especially in tech and data analysis.
- 2012: Brazil passed the Autism Law ("Lei Berenice Piana"), recognizing autism as a disability, which entitled autistic individuals to full access to education and healthcare. This law set a global precedent for autism recognition in developing nations.
- 2012: The Autism Society of South Africa leads efforts to raise awareness and advocate for governmental support for autistic individuals. Although access to services remains limited, the organization plays a key role in educating the public and promoting early intervention programs.
- 2013: The DSM-5 combines autism subtypes (Autism, Asperger syndrome, PDD-NOS) into one unified diagnosis, Autism Spectrum Disorder (ASD), reflecting the diversity of autistic experiences. The prevalence rate continues to rise, with the CDC estimating 1 in 88 children diagnosed.
- 2013: WHO focus on Autism in Low and Middle Income Countries. The WHO emphasizes the lack of autism services in low- and middle-income countries and highlights the global disparity in autism diagnosis, treatment, and support services. WHO launches efforts to promote capacity-building and improve access to autism services worldwide
- 2014: The CDC estimates 1 in 68 children in the US are diagnosed with autism, reflecting improved diagnostic practices and growing awareness.
- 2014:The Autism CARES Act (which stands for Autism Collaboration, Accountability, Research, Education, and Support) is passed, reauthorizing and expanding federal efforts under the CAA. It introduces a new focus on lifelong services and supports for autistic adults, addressing the need for transitioning from childhood services to adult care.
- 2014: The WHO includes autism in its Comprehensive Mental Health Action Plan (2013-2020), calling for international collaboration to enhance early identification, intervention, and care for individuals with autism. This plan focuses on improving mental health services for people with neurological and developmental disorders, including autism, especially in resource-poor settings
- 2014: South Africa holds Africa's first National Autism Conference, bringing autism research and advocacy to the continent. South Africa's focus grows on early diagnosis and intervention, as well as inclusion in education.
- 2014: The Global Autism Public Health (GAPH) Initiative, launched by Autism Speaks, collaborates with ministries of health in Bangladesh, Kenya, Mexico, South Africa, and other countries to create national autism action plans. These plans focus on building capacity for early detection, screening, training professionals, and raising public awareness. In Bangladesh, the Shuchona Foundation leads national autism awareness campaigns, addressing the need for policies that include neurodevelopmental disorders in healthcare frameworks. In Kenya, GAPH partners with local organizations to train healthcare providers and teachers, helping to identify autism early and provide educational support.
- 2015: The first Autistic Pride Day is celebrated, organized by autistic self-advocates to promote acceptance and emphasize the strengths of neurodiversity.
- 2015: Countries like Saudi Arabia and Jordan begin developing autism centers and services in response to increased autism awareness in the region. In Saudi Arabia, the Jeddah Autism Center provides early intervention and support programs, becoming a key resource for families in the region.
- 2017: India issues its first National Guidelines on Autism under the Ministry of Health and Family Welfare. These guidelines emphasize the need for early screening, public awareness, and inclusive education for autistic individuals. They also advocate for better training for healthcare professionals to recognize autism in early childhood.
- 2017: The CDC reports autism prevalence has risen to 1 in 59 children, driven by broader diagnostic practices and increased awareness.
- 2017: The IACC releases a new Strategic Plan that broadens its focus to include employment, healthcare, and service needs for autistic adults. This plan highlights the importance of research aimed at improving the quality of life for autistic individuals throughout their lifespan, with an emphasis on transitioning to adulthood.
- 2017: The Journal of Autism and Developmental Disorders publishes a study showing the higher likelihood of co-occurring conditions, such as anxiety and epilepsy, in autistic individuals. This leads to greater focus on holistic healthcare for autistic people.
- 2018: The World Bank and the World Health Organization (WHO) partner with several South Asian countries, including Nepal, Sri Lanka, and Bangladesh, to promote autism-friendly healthcare services. This collaboration focuses on creating autism awareness campaigns and building healthcare capacity for diagnosis and treatment in resource-limited areas.
- 2019: The Autism CARES Act reauthorization is signed into law, continuing the initiatives set forth by the previous acts. It further expands the focus on autistic adults and aims to address health disparities, especially among underserved communities, including racial and ethnic minorities and rural populations.
- 2019: ICD-11 (Eleventh Revision) ntroduces a major change by adopting the term Autism Spectrum Disorder (ASD), consolidating various autism subtypes (such as Asperger’s Syndrome and PDD-NOS) under a single umbrella diagnosis, similar to the changes made in the DSM-5 (2013). The focus shifts to recognizing autism as a spectrum with varying levels of support needs. ICD-11 also introduces a focus on functional impairments associated with ASD and acknowledges the need for varying levels of support across the lifespan, making the classification more aligned with current research on autism as a lifelong condition.
- 2019: Climate activist Greta Thunberg, an openly autistic individual, gains global recognition, challenging stereotypes about what autistic individuals can achieve.
- 2019: Kenya passes the Autism and Developmental Disabilities Bill, becoming one of the first African countries to legislate support services for autism. The bill mandates government funding for special education programs, early diagnosis, and community-based support for autistic individuals.
- 2020: The CDC reports autism prevalence at approximately 1 in 54 children. Research increasingly focuses on co-occurring conditions, such as anxiety and epilepsy, as well as autism across the lifespan, including in aging adults.
- 2020: The IACC shifts some of its focus to the impact of the COVID-19 pandemic on the autistic community, particularly in relation to accessing healthcare and educational services through telehealth and virtual platforms. The committee begins addressing the unique challenges the pandemic poses for autistic individuals and their families.
- 2020: Greta Thunberg, the autistic Swedish climate activist, is named TIME Person of the Year, bringing further visibility to autism in public life and challenging misconceptions about what autistic individuals can achieve.
- 2020: WHO launches Global Initiative on Autism a project aimed at addressing the challenges of autism diagnosis and care in low- and middle-income countries. The initiative focuses on improving training, early diagnosis, and intervention programs, while also raising global awareness about autism.
- 2020: European Autism Action: The European Parliament passed a resolution for a European strategy on autism, highlighting the need for coordinated autism policies across Europe, focusing on early intervention, education, and employment.
- 2020: Autism advocacy continues to grow in Latin America, with Brazil leading efforts to promote inclusive education and early diagnosis programs. Mexico and Argentina strengthen national policies supporting autistic individuals in healthcare and education, advocating for better training for educators and healthcare workers.
- 2021: The World Health Organization (WHO) releases updated guidelines on autism, stressing early diagnosis and ongoing support services throughout life, especially in low- and middle-income countries. WHO emphasizes the importance of developing national autism strategies within countries to ensure sustainable services for autistic individuals. These strategies encourage governments worldwide to invest in autism. research, diagnosis, and community-based care
- 2021: Lifelong Autism Services become a major advocacy focus, with governments worldwide beginning to recognize the lack of adult services and employment opportunities for autistic individuals.
- 2021: The "Lancet Commission on the Future of Care and Clinical Research in Autism" releases recommendations for prioritizing lifelong care, emphasizing the need for better adult diagnostic tools and services for aging autistic populations.
- 2021-2030: Autism-Europe: This umbrella organization works with the European Union to promote the rights of autistic people across Europe, helping to secure the European Disability Strategy (2021-2030), which includes provisions for autistic individuals.
- 2021: In Sub-Saharan Africa, countries like Uganda, Ghana, and Tanzania begin developing autism awareness campaigns with support from international organizations. Programs focus on educating communities about autism acceptance and improving access to diagnosis in rural areas. In Uganda, the Autism Awareness Care and Training Centre (AACT) plays a vital role in raising awareness and offering training for parents and teachers.
- 2022: In Brazil, the Autistic Person’s Statute is implemented, protecting the rights of autistic individuals and establishing a national policy that mandates inclusive education, healthcare access, and employment support for individuals on the spectrum. Other Latin American countries, like Chile and Colombia, follow suit, enacting autism legislation to ensure better services and protections for their autistic populations.
- 2022: Autism is increasingly understood through the lens of the neurodiversity movement, emphasizing a strengths based approach.
No comments:
Post a Comment