An Evolving Landscape of Autism Research

AI and Technology in Autism

• 2020s: Artificial intelligence (AI) and machine learning are applied to analyze large datasets in autism research, identifying biomarkers and developing early detection algorithms.

Biomedical Research

• 2000s: Gastrointestinal Issues and the Gut-Brain Axis: Studies link GI issues to behavioral changes in autism, leading to research on the gut-brain connection and its impact on autism symptoms.

• 2014-2018: Endocannabinoid System: Research reveals its role in regulating mood and stress in autism, leading to trials exploring CBD as a treatment for anxiety and sensory sensitivities.

• 2016: Immune System and Neuroinflammation: Research finds links between immune system irregularities and autism, with some individuals displaying elevated inflammatory markers.

• 2017: Microglia and Inflammation Research: Studies on microglia (the brain’s immune cells) suggest that increased activation may contribute to autism traits through neuroinflammation.

• 2019: Microbiome and Gut-Brain Research: Research on the gut microbiome shows that differences in gut bacteria may influence autism symptoms, prompting interest in probiotic treatments.

• 2019-2021: Nutritional and Metabolic Research: Research explores nutritional deficiencies and metabolic dysfunction in autism, leading to interest in dietary supplements and other nutritional interventions.

• 2020s: Precision Medicine Approaches: The rise of precision medicine leads to personalized autism treatments tailored to individual genetic, biological, and environmental profiles.

Mental Health

• 2010s: Autism and Anxiety: Studies show that anxiety is one of the most common co-occurring conditions in autism, particularly linked to sensory sensitivities and social challenges.

• 2020s: Depression and Suicide Research reveals high rates of depression and suicidal ideation among autistic individuals, leading to calls for targeted mental health interventions.

Co-occurring Conditions

• 2014: High Prevalence of Co-occurring Conditions: Studies reveal that 70-80% of autistic individuals have co-occurring conditions like anxiety, depression, ADHD, or epilepsy, emphasizing the need for integrated care.

Aging and Lifespan Research

• 2010: Shift Toward Aging Research: Research begins focusing on the aging process in autistic adults, identifying accelerated aging and increased physical and mental health conditions.

• 2015: Aging in Autistic Adults: Studies show that older autistic adults face increased physical health issues like mobility problems and early cognitive decline.

• 2016: Premature Mortality in Autism: Research reveals a higher risk of premature mortality in autistic individuals due to co-occurring conditions and limited healthcare access.

• 2019: Social Isolation and Mental Health in Older Adults: Studies highlight loneliness, depression, and anxiety in older autistic adults, prompting calls for better social support.

• 2020s: Aging, Mental Health, and Physical Health: Research shifts to focus on employment, independent living, and healthcare for aging autistic individuals, emphasizing the need for lifelong supports.

• 2023: Neurodegenerative Diseases and Autism: Emerging research suggests that older autistic individuals may be at higher risk for neurodegenerative diseases, prompting preventive healthcare strategies.

Motor Function and Movement Disorders

• 1980s-1990s: Recognition of  motor impairments in autism, such as coordination issues and fine motor skill difficulties.

• 2000s: Movement and Motor Stereotypies: Motor stereotypies, such as hand-flapping and rocking, are studied as part of sensorimotor integration and self-regulation in autism.

• 2011: Motor Planning and Dyspraxia: Research reveals that many autistic individuals struggle with motor planning and dyspraxia, affecting both fine and gross motor tasks.

• 2015: Cerebellar and Motor Function: Neuroimaging reveals cerebellar abnormalities in autistic individuals, linking them to difficulties with motor coordination and balance.

• 2016: Gait and Balance in Autism:  Studies show that many autistic individuals have atypical gait patterns and balance issues, which affect daily functioning.

• 2018: Motor Skills and Social Communication:  Research highlights a link between motor skills and social communication, suggesting that improving motor coordination can also enhance social abilities.

• 2020s: Movement Disorder Subtypes: Research identifies subtypes of motor dysfunction in autism, including parkinsonism and proprioceptive challenges, adding depth to motor-related autism research.

Genetic and Neurological Research

• 1977: Genetic Link Discovered: Twin studies by Folstein and Rutter reveal a strong genetic component to autism, marking the beginning of autism genetics research.

• 1980s: Brain Differences Identified: Neuroimaging shows structural differences in the amygdala, frontal cortex, and cerebellum, regions related to social interaction and motor coordination.

• 2007: Autism Genome Project identifies several genetic mutations, emphasizing the heterogeneous nature of autism and its complex genetics.

• 2011: Synaptic Pruning: Research finds that impaired pruning in autistic individuals may lead to excess neural connections, contributing to sensory overload.

• 2015: CRISPR and Genetic Editing:  The introduction of CRISPR/Cas9 gene-editing technology provides new insights into autism by allowing the study of genetic mutations and considering potential treatments.

• 2018: Epigenetics research shows how environmental factors influence gene expression, adding complexity to the genetic understanding of autism.

Sensory Processing Research

• 1990s: Sensory Processing Differences: Researchers recognize sensory processing differences (hypersensitivity or hyposensitivity) as a hallmark of autism, leading to sensory-based therapies to manage anxiety and stress.

• 2000s: Sensory Integration Therapy emerges as a common approach to help autistics respond better to sensory input, using activities such as swinging, climbing, and deep pressure to improve sensory regulation.

• 2000s: Sensory Overload and Environmental Factors:  Studies explore how sensory overload in environments like schools and workplaces contributes to anxiety and meltdowns. Creating sensory-friendly environments with dim lighting and noise reduction improves functioning.

• 2010s: Sensory Over-responsivity and Brain Connectivity: Over-responsivity to sensory stimuli is linked to atypical brain connectivity, showing hyperconnectivity in sensory processing areas, which results in overwhelming responses to stimuli like loud noises or bright lights.

• 2010s: Sensory Subtypes in Autism:  Researchers identify sensory subtypes, including over-responsive, under-responsive, and sensory-seeking behaviors, acknowledging the diversity in sensory processing challenges.

• 2018: Sensory Processing and Mental Health:  Research highlights the connection between sensory processing differences and mental health conditions, such as anxiety and depression, especially in relation to sensory overload contributing to social withdrawal and stress.

• 2020s: Sensory Processing and Social Communication:  Findings suggest that sensory processing differences directly impact social communication in autism. Sensory overload may interfere with social interactions, prompting sensory-informed social skills interventions.

• 2020s: Wearable Sensory Devices: Wearable devices, such as noise-cancelling headphones and compression garments, help autistic individuals manage sensory overload in daily settings.

Technology and Autism

• 2010s: Assistive Technology for Communication [still lagging terribly]
  

• 2020s: AI and Virtual Reality (VR):  applied in autism research, particularly in social skills training, allowing autistic individuals to practice social interactions in controlled settings.

Autism and Employment

• 2010s: Employment Challenges: Research reveals widespread unemployment and underemployment among autistic adults, leading to the development of neurodiversity hiring programs at major companies like SAP and Microsoft.

• 2020s: Inclusive Work Environments:  Studies focus on creating inclusive work environments, showing that autistic employees can thrive with the right accommodations and mentorship.

Social Cognition Research

• 1980s: Theory of Mind (ToM): Research introduces mindblindness in autistic individuals, suggesting difficulty understanding others’ thoughts and feelings (Theory of Mind deficits).

• 1990s: Executive Function and Social Challenges:  Studies explore how executive function deficits (e.g., planning, flexibility) affect social cognition, leading to challenges in managing social situations.

• 2000s: Empathy Research:  Researchers distinguish between cognitive empathy (understanding others’ perspectives) and affective empathy (sharing others’ emotions), with cognitive empathy being impaired but affective empathy often intact.

• 2010s: Mirror Neuron Research:  Mirror neuron dysfunction is studied as a potential cause of difficulties with social imitation and understanding others' actions in autism.

• 2017: Social Skills Training:  Social skills training programs target social cognition deficits, such as recognizing emotions and understanding social cues, improving social functioning.

• 2018: Social Cognition and Cognitive Flexibility:  Research shows that autistic individuals process social information differently, leading to interventions focused on cognitive flexibility and social interaction.

• 2020s: Social Motivation Theory:  Social motivation theory suggests that reduced motivation for social interactions, rather than an inability to understand social cues, contributes to autism’s social challenges.

Early Identification and Intervention

• 1990s-2000s: Early Screening: Advances in early screening tools, enable earlier detection and more effective interventions.

• 2010s: Early Behavioral Interventions: Research on early interventions ABA, Early Start Denver Model (ESDM), and Pivotal Response Training (PRT).

Autistic Women and Gender Differences

• 2010s: Autism in Females:  Research revealing that many autistic women and girls are underdiagnosed due to masking behaviors.

• 2020s: Late Diagnosis in Women:  Studies  emphasize the need for gender-sensitive diagnostic criteria and appropriate supports for these individuals.

• 2010-20s: Nonbinary Individuals: Studies emphasize the need for gender-sensitive diagnostic criteria. Researchers find that nonbinary and transgender autistic individuals are also often underdiagnosed or misdiagnosed, as their experiences may not align with traditional diagnostic frameworks. 

Family and Caregiver Research

• 2000s: Family Impact: Research highlights the emotional, financial, and logistical burdens faced by families and caregivers of autistic individuals, calling for family-centered support services.

• 2000s: Sibling Research:  Studies explore the experiences of siblings of autistic individuals, prompting the development of support groups and resources for siblings.

Neurodiversity and Self-Advocacy

• 2010s: Rise of the Neurodiversity Movement: The neurodiversity movement led by autistic self-advocates promotes the view of autism as a natural variation of human experience, leading to a strengths-based approach to autism research.

• 2020s: Advocacy and Policy Changes: push for more inclusive research practices and participatory models, making autistic individuals co-creators of research.

A kinder ABA is a therapist driving you to the point of frustration, then offering to hold your hand

https://link.springer.com/article/10.1007/s40617-023-00833-w 

Good grief is all I can say. 

Adding the prefix of "Kind" to something does not automatically make anything automatically Kinder. As is peppering a paper with the word "Kind" to sublimely influence you that it must be kind. 

And a sample size of 4 autistics in the study makes this a valid method, how?

And what did this  "kind" translate to exactly. when a therapist drives you to the point of a tantrum in the first place, then offers to hold your hand, and saying "I can see you are frustrated."

Is this a new marketing strategy by the (massive-profits with no accountability) ABA industry to make even more profits of desperate families. 

Please don't joke around with studies trying to whitewash stuff. This is not helping.  

Power dynamics of ABA

https://autisticselfadvocatesagainstaba.wordpress.com/2020/04/13/problematic-and-traumatic-why-nobody-needs-aba/?fbclid=IwAR3aeHROwIEr2uaRmsw7i1oBuOy90Cln8cMgi_nJ4bZGT87VckcUhTUoOqA

Some points that resonated in this article. 

The problem with reinforcements. 

• "tablet time” is used as reinforcement. This is a problem because many autistics rely on their tablets for communication. Many autistics are non-speaking, and to take away their means of communication is one reason increasingly aggressive or “challenging” behaviors persist — they are not being heard or understood and the only way left to communicate their discomfort, pain, or any other needs has been taken away."

The loss of childhood.

• "A child is typically expected to participate in 25-40 hours of ABA therapy each week; that is 5-8 hours a day of repetitive, uncomfortable, or potentially painful demands and broken down tasks, of few or no breaks, of being presumed incompetent, and of not having adequate accommodations.
A full-time job is expected of kids under the age of 4, and there is no strong evidence to suggest that it is effective or beneficial. Children should be allowed to have a childhood, and that is not possible when they must sit through 25-40 hours of therapy each week. This level of intervention leaves little time for rest, play, and learning outside of therapy, which can wreak havoc on a child’s mental health."

Lack of training and quality control. 

• "Many ABA practitioners are Registered Behavior Technicians (RBT)s, which any 18-year old with a high school diploma could be by taking a 40-hour training and passing an exam."

Long term trauma and PTSD

• "A survey of 460 autistic adults and caregivers of autistic children evidenced that 46% of those who participated in ABA therapy met the diagnostic criteria for PTSD, and 47% of those meeting this diagnostic threshold experienced severe symptoms (Kupferstein, 2018)."

Yet, still touted as the gold-standard EBT

• "Yet ABA is still widespread throughout the United States and it is recommended under the premise of being an effective evidence-based practice. However, there is weak evidence that ABA is an effective behavioral treatment. Rated on the GRADE system the quality of evidence is low to very low (Reichow, Hume, Barton, & Boyd, 2018). In fact, “of the 58 studies done on Lovaas’ ABA therapy, only one was found to meet the U.S. Department of Education’s standards for scientific evidence."

Related Posts

• https://uniquelyhari.blogspot.com/2023/05/private-equity-and-aba.html
• https://uniquelyhari.blogspot.com/2023/04/this-is-2023-shocks-are-still-part-of.html
• https://uniquelyhari.blogspot.com/2019/04/mental-cripple.html
• https://uniquelyhari.blogspot.com/2023/05/who-has-dx-and-who-is-professional.html

Who has the dx, and who is the professional

This week I heard of an instance where an ABA therapist got offended at a something his autistic client did and quit over the autistic teen not following directions. 

The autistic teen had been asked to wait at a library, looks like that teen hung around for a while, and then decided to just walk back to his home alone after a while. 

I want to ask, who has the diagnosis here, who is the professional "behavior-therapist" here who is supposed to help shape behaviors instead of walking off in a huff. 

Why have the word "behavior" in applied-behavior-therapy if you don't want to even help with or deal with behavior in the first place. 

Private equity and ABA

Another example of private equity (valuation) driving ABA therapy. This does not bode well for the marginalized groups within autism and furthers the exploitative and profit hungry nature of autism therapy. 

When the focus is on $$$$, companies will turn away the "non-easy" cases (aka, autistic kids with behaviors) and take up cases they perceive are easy, so that they can show quick results to the investors. Given the heterogeneity of autism with the dx ratio now at 1:36, there are enough non-behavior kids to fill any amount of supply.   There is irony in behavior agencies turning away kids with behaviors who need help.

There is focus on valuation but not on quality control in ABA, because in autism if a kid does not improve, the fault is all on the kid, never the therapy. The one industry where there can be profits with no accountability. 

https://bhbusiness.com/2023/05/12/autism-therapy-providers-tie-upskilling-to-beating-turnover-serving-more-families/

This is 2023. Why are shocks still part of Autistic Behavior Therapy?

This is 2023: Shocks are being used on autistics as part of ABA Therapy. The UN calls it "torture". Read this article by Eric Garcia in the Boston Globe. 

https://www.bostonglobe.com/2023/01/30/opinion/will-shock-treatment-finally-be-banned/

1965: The images show a Photo Essay that appeared in the 1965 issue of Life Magazine about ABA therapy being done on Autistic Kids with Dr Loovas. Shocks were used as aversives -  the floor is laced with metal strips and the autistic girl in the picture is barefooted.  

Moser, D., & Grant, A. (1965). Screams, slaps & love: A surprising, shocking treatment helps far-gone mental cripples. Life Magazine, 90-102

A link to the full article is at  https://cpb-us-e1.wpmucdn.com/blogs.uoregon.edu/dist/d/16656/files/2018/11/Screams-Slaps-and-Love-Life-Magazine-13javg3.pdf 

TBI Regressive Autism

Ameliorating Hemianopia with Multisensory Training (Rowland et al., 2023)

Quick Summary of paper . An  visual-auditory stimulation therapy was used on two older males  who has loss of vision in the left hemifield (hemianopia). The cause was brain trauma (TBI) rather than lesion.  Prior to joining the study both had been referred to PT and OT as rehabilitation measures. 

• 64 year old JM joined the study 14 months after stroke  (2 infracts)
• 74 year old CW joined the study ~18 months after 1 infract (better sighted field compared to JM). 
• Therapy took place over 8 months /10 sessions 

The results were dramatic. Both patients recovered the ability to detect and describe visual stimuli throughout their formerly blind field within a few weeks. They could also localize these stimuli, identify some features, and perceive multiple visuals simultaneously in both fields. (more detail on paper here link)

Relating all this back to Autism

So impressive about being able to restore sight in a matter of 8 months, given therapy was started 14-18 months after infract and not immediately and it was in older adults. 

Why is regressive autism not thought to be TBI at 18 mo, where there is a sudden loss of learned skills. 

• If TBI --> can those lost skills not be regained through targeted therapy. If you can restore skills in 60-70 yr old, should be able to, in a younger more plastic brain. 
• If TBI -->  is this related to CW & JM having practice with vision for 60-70+ years vs toddlers who only have practice with the skills for 18 mo.

Rethink Traditional Therapies

• CW & JM  had PT/OT for 14-18 mo before joining study; implication these therapies not that useful for regaining lost skills. 
• Autistics kids are in insane amounts of therapy (childhood stuffed with ABA/speech/OT every waking hr with little advances to show for it other than the $$$ spent and lots of career advancement for therapists). 
•  Maybe we need rethink early childhood therapy to be more targeted to restore lost skills. Even regaining that level of lost skills improves quality of life, let alone moving beyond.

A Timeline of Autism

Early Observations (Pre-1940s): Autism Before Its Recognition

• 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.

1940s: First Recognition of Autism as a Disorder

• 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.

2020s: Expanding Focus on Lifespan and Global Support

• 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.

Read more on timelines... An Evolving Landspace of Autism Research...

Why take a class on Autism

What students in the Autism Class I teach at UC Berkeley had to say (From Spring 22 & Fall 21 students)

• I am interested in developmental psychology and psychiatry, but I always felt like I did not learn enough about autism spectrum disorders in my classes. I would like to learn about autism in general and find what I can do to better understand and support.
• I just want to learn more about autism because I want to become a special education preschool teacher in the future
• My cousin has autism and I used to spend a lot of time with him as a child. When I was young, I had a lot of difficulty understanding him because he would often pull my hair or ruin drawings and paintings that I made. I haven't seen him since I moved to the U.S. but I plan on visiting Korea soon after COVID settles down. This time I want to understand him better and therefore I'm taking the course.
• I have always been interested in autism. I would like to learn as much as I can about it from physiological\medical aspect, any past\ongoing researches about it. I would also be interested in learning about past attempts to cure it, and current methods that claim to cure it (even though not proven scientifically).
• i have extreme ADHD, borderline autism, so i’m so fascinated to know more about it. i want to know how different traits show up in different ways in different people and what is the universal cutoff between adhd and autism?
• I'm currently working as a Behavioral Technician at --- Autism Therapy, so I hope that taking this course would make me a better one for my client! I also want to learn more about autism because my training was purely clinical.
• As someone who recently discovered her own neurodivergence, I would love to learn more about certain autistic behaviors and how I can better identify them. I'd also love to learn how to better support people with autism when they're overstimulated or unable to voice their discomfort, as well as where ADHD and autism differ (because I have an ADHD diagnosis, but suspect that I may be on the spectrum).
• There's quite a big stigma surrounding autism where I'm from (middle east), and I'd like to overcome that. I don't know much about the condition at all -- even the 1 in 54 statistic was very surprising to me! -- and hopefully gain a better sense of what it means to live with it. Overall I just want to be more attentive to others' needs, and be aware of what it means to cope with neurodivergence.
• Child development as it relates to autism
• I have friends and family members who do have Autism, so I'd like to gain a greater understanding on what Autism is. As an aspiring health care professional, I'd also like to be more knowledgeable.
• I'm interested in learning more about ASD and how it impacts development and later life at different levels
• Leaning more about ASD to better support my family and future students
• I have worked with people on the spectrum, and I have always loved learning about genetics as well as development, and I'd just like to learn more about autism in general.
• I want to dive deeper into the literature around autism, and hopefully gain a deeper understanding of my own cognition through that process. I am also really excited to have the opportunity to learn from and talk to other autistic people.
• During quarantine I started learning more about autism from doing my own research online. I found communities of late-diagnosed and undiagnosed autistic people and started to realize how I related to many of the experiences that these people were sharing. After a lot of self-reflection and rumination on life experiences from childhood to now, as well as looking at my family members' experiences, I concluded that I am probably autistic and I have multiple family members who are also likely undiagnosed autistics. I'm seeking community from this class. I want to learn more about autism within other marginalized communities and how those intersecting identities affect people's lives, perspectives, and access to resources (like medical/psychological health care, school accommodations, employment, etc.). I want to learn more about what US policies are doing to help/hurt autistic people.
• This course is interesting to me because my little brother is diagnosed with autism and I am curious to learn more.
• I want to understand my cousin more. I know how lonely and frustrating it can be to be put aside for reasons out of your control. I haven't done a good job including him or interacting with him because I don't know how or am afraid I will upset him in some way. I am planning to be a speech pathologist in the future and specifically want to work with children on the spectrum.
• I would love to learn more about the various types of autism and what to know about when working with someone with autism.
• Learn more about autism overall, nothing specific I just want to gain a better understanding of it
• The reason why I'm interested in the course is that I learned about autism but in high school and wanted to educate myself and be more self aware about autism. I definitely would love to learn more about the different characteristics of autism because I've learned in the past how autism affects people in multiple ways. Some topics I would like to learn more about is how to interact/communicate with someone who has autism.
• I'm interested to learn more about autism. Specifically, how autism differs between boys and girls. I know girls are better at masking - causing further many girls to never receive a diagnosis until more recently. I'm also interested to look into the neurological differences, if any, between individuals diagnosed with autism and individuals who are not diagnosed with autism.
• I have worked with children on the autistic spectrum for the past five years in mentorship programs, and would like to learn more about autism in general
• I want to understand autism better in general because my older brother has autism. I think that studying autism in this course will help me better understand his experience and give me ideas on how to better support to him. In particular, I am most interested in nonverbal autism.
• I would like to better understand autism and how to best accommodate and promote autistic people because I feel like there's a general lack of knowledge and misunderstanding in society about autism. Thus, I want to improve my knowledge and be able to spread awareness.
• Everything! History, assessment, etiology
• I would love to learn how to be more understanding with those on the autism spectrum and to understand how they think more.
• This course interests me because I honestly do not know much about the actual disorder, and I have just had exposure to people on the spectrum. I hope to learn more about the variability within the spectrum and I would like to know more about the disorder's history and discovery.
• Pathologization of autism; intersectionality; the future of autism; who is autistic?
• Too much to type, but I worked with a club in high school called Circle of Friends where we did friendly activities with autistic individuals
• I'm not too sure what autism is, but I have some friends who are on the spectrum, so anything would be great.
• I'm considering focusing on neurodivergence for my main subject in my American Studies major so I was hoping this class could give me a little bit more solid background / an intro to what Berkeley classes on the subject would seem like.
• I have always been interested in learning more about the spectrum since I spent a lot of my time after high school with autistic children at their school and just hanging out with them aiding them with their extra curricular activities like drama club and dance. I would like to really know a lot more about the people on the spectrum and I would also like to help spread awareness and "normalize" people that aren't neurotypical.
• Neurodiversity is one of my special interests so I'm excited to learn more about it! Right now I'm especially interested in learning more about how autism intersects with different identities/presents differently in different groups, and also how masking can affect different areas in autistic peoples lives that might be less well known or less talked about. One topic I haven't looked into much yet but want to learn more about is how stigmatized autism is in the medical/scientific field and how that affects the research done on autism.
• I am a disabled activist and often partner with autistic activists as well as families of autistic people. I know a little about the ABA controversy, but would like to know one. I have also done a little reading about how Autistic women may present differently. Finally, I have Cerebral Palsy and at times have interesting reactions to stuff myself. For example, I HATE getting my nails clipped. Very much an overreaction.
• Being on the spectrum, I am interested in not just thinking about how my mind is similar to or different from that of others, but I am also interested in meeting other people in on the spectrum, as beyond my mother, I’ve never throughout my life met someone as such.
• I've recently been looking into autism research and have begun to (tentatively) identify myself as autistic. I'm hoping to better understand myself through this course and also learn more about autistic history/culture, lived experiences, and how being on the spectrum affects people who also have other disorders like ADHD.
• I want to learn more about autism so I can be a supportive friend to every autistic I know and will meet in the future, as well as stand in solidarity with autistics for equal rights and universal accessibility. I want to learn what needs I should be aware of to be an accommodating friend and keep those in mind when I am in leadership positions.
• As a person with autism, I am interested in learning more about how the neurotypical world contrasts with the way I think. I would specifically like to study differences in brain structure among people with autism. Also, I've heard that people on the spectrum are more likely to identify as LGBT+. I find this interesting, especially given that I am a gay person myself. This would be a topic I would like to learn more about as well. I also think that this course would be a great way to meet people on the spectrum! In fact, I've never known (that I know of) a peer of my age that is also on the spectrum.
• Autism is rarely talked about in society, and if so, often only in negative / inaccurate ways. I hope to learn more about autism from actual autistics and those who are knowledgable about the subject. Topics I’d like to know more about: intersectionality in autism, masking, autism in the workplace + autism in adulthood, mental health / comorbid conditions with autism
• I want to learn how autism affects someone because my brother has very slight autism so my family and I don't truly understand to what extent autism affects the way him.
• I don't know very much about the spectrum, so I am interested to find out more. I think it is interesting how autism affects different people. I think it also would be interesting to see how society views people on the spectrum.
• I wish to learn everything I can. Very open to any learning I can get.
• I'm taking this course because I've interned at a couple non-profits working with people on the spectrum, and I want to know learn more and how to be the best ally I can!
• I'm a disability rights activist and work with Autistic activists so that piqued my interest. I also know ABA is considered not great by some Autistic activists, but not sure exactly why and want to learn more. Finally, though I don't think I'm Autistic, I do have Cerebral Palsy and consider myself neurodivergent and at times have sensory integration issues or something. (For example I hate getting my finger nails clipped) and at times I do things in a very particular way ( For example. When eating different foods on one plate, I have to always go from least favorite food to most favorite.).
• I would like to learn more about Autism in general and how people on different areas of the spectrum present themselves. Learning tools to communicate with and understand those with autism would be great.
• As someone who is not autistic I would like to know more what it is like to live with autism, and what I can personally do to create a welcoming and safe environment for them. My cousin is autistic and he is 10 years old and non verbal. I never want feel like I'm not giving him everything he needs.
• I'm a soon to be behavorial technician. I'm very excited to be working with children on the spectrum. I want to have a positive impact on the kids I'll be working with and I want to be as prepared as possible and I believe this course will be extremely beneficial. I would love to learn ways I can best support children with ASD. I really want to learn as much as possible about ASD and how I can help shift our society to being more inclusive and aware of how to support people with ASD.
• How to reduce stigma surrounding autism
• From the little I know about the course, the community interests me most. I don't know much about autism spectrum disorder aside from what my friends on the spectrum have told me, so I would like to educate myself on other perspectives on the spectrum.

5th Semester of the Autism DeCal - Spring 2021 Edition

The course officially started on 1/25/21. And we started with a speaker on Day 1 itself. Why? Because I had submitted a syllabus for 13 weeks but realized there were only 12 Mondays this semester (Presidents Day and MLK take up 2 monday holidays). I had planned for 10 speakers. The last 2 classes have no speaker due to group projects. Anyhow it worked out well.

We had Noor Perez who does community outreach at ASAN come and speak on intersectionality in the second hour. Noor just gets better each semester and the class really enjoyed her talk.

For the first hour we had our introductions, our ice breakers, course expectations then our lecture on introduction to Autism.

And Apr 26, the last class, I can't believe we are done already.

Feedback from Students about the Class.

On Hari As Instructor:

• Hari was amazing! He is super inspiring and such a hard worker. He kept it real throughout the entire semester and I learned so much from him
• Hari did an amazing job! I really loved this class and I'm so grateful I took it
• LOVED Hari- he was funny and open and at times hearing how difficult things are for him a little heart breaking but also super hopeful- because I know he has struggled and come so far in a society where I struggle just to get parking. I especially appreciated his discussion of things that are difficult for him- like in the chat today he mentioned smiling is difficult for him as a motor function which is very different than my experience with my kids as for them it’s complicated because they don’t associate emotions with physical reactions on their faces- it’s just weird to them. Having that as background knowledge was much easier for me to understand than a page of potential ways autism can present- his explanation was just so clear. I have spent years reading and trying to understand what my kids go through and so much was just obvious when Hari put context behind it.
• Hari was amazing as facilitator.
• Hari is a fantastic facilitator and spends lots of efforts on preparing course materials
• I really enjoyed Hari as a facilitator and I'm super grateful I got to take a class taught by a student as accomplished as him.
• Hari was amazing as a facilitator. I don't think there are any improvements he needs to make (wifi issues are beyond our control). I loved his perspective and it truly enriched the class
• Great! Love the constant engagement in the Zoom chat
• Hari is Great
• Hari was great, i would hate to ask him to do any more. He did enough and should not be asked to do more because there is already so much pressure on him being the only facilitator on the spetrum and im sure everyone looks to him for information.
• I thought Hari was a great facilitator and he really brought in such a unique perspective because he was able to give his person experiences with so many of the topic
• Hari was a great facilitator and I'm grateful to have taken this course with him as a facilitator and not later
• Hari is great
• I think Hari was great! his explanations were clear
• Hari was a great facilitator! I really enjoyed hearing about his accomplishments and his personal experiences on certain topics. He can definitely share his experiences more

Which lecture(s) / topics(s) was most impactful?

• I enjoyed learning most about common "behaviors" associated with autism, as well vocab because that is helpful background knowledge.
• I found the most impactful lecture in all of class to be law enforcement and autism. This is a huge issue. 
• The most impactful topics for me were 2 (Autism Vocab), 4 (Common "behaviors") , 5 (Law enforcement), 6 (Common Therapies/Interventions), 9 (Tech & Autism), and 14 (Careers in Autism Space). These were super interesting and gave us both the positive and negative realities about having ASD and having to deal with real-life issues.
• 4. Some common behaviors associated with autism - because it really helps you familiarize yourself with these behaviors and understand them. So that you don't treat someone stimming in public differently or you can educate others as well.
• I enjoyed learning about 7 and 14 the most. I didn't realize how many comorbidities that there were and was excited by potential future prospects for autistics
• especially 6! i think discussing ABA pros and cons was very insightful
•  As someone who struggles with mental health, I loved the intersectionality with mental health in 3 and 8. I love learning more about mental health
• I think topics 14 (Careers in Autism Space), 6 (Common Therapies & Interventions), 2 (Autism Vocab), 8 (mental health), and 12 (Adult Issues) were the best ones. I think number 2 is particularly important as it gave us all information on how to use vocab correctly. Plus, I think autism in the workplace and ABA lectures were very impactful and I reflected a lot on them afterwards.
• 5 (seeing the black caretaker shot despite doing everything right was heartbreaking. This was impactful a little because of the social moment we're in with regards to race, but also because it showed that caretakers do care, even if some are not all that great), 12 (Geriatrics), 15 (Covid)
• The most impactful topic is Week 5-Law Enforcement and Autism - how autistics behaviors can be misinterpreted by police as willful noncompliance
  

On guest speakers.

General Comments

• Thank you for facilitating this course. I hope that it will be able to continue, even after Hari graduates,
• This course was impactful! i really learned so much and enjoyed every class.
• Thank you so much for such an incredible semester! I've learned so much!
• I loved this course and thought all the facilitators and guest speakers did a great job
• Thank you all so so much. I learned a great deal from this class and it was a wonderful experience being able to learn so much new information and hearing from amazing guest speakers
• Really appreciate the course! It definitely had a major impact on my understanding and now current view of autism
• This was an amazing course. Thank you.
• Thank you for such a great semester.
• This course was amazing! I will recommend it to my friends and I hope it keeps running. I think something that could improve is coordinating the lectures with the guest speakers so there are no overlaps or repetitive content. Also, lectures could be slower; sometimes they were hard to follow because of the speed
• In general, I think it was really valuable how the class discussed these topics and autism on a larger scale such as disability law and job advocacy alongside getting to hear from individuals such as the adult and parent panels on their unique experiences with autism. The class really did a great job of complementing with lectures, guest speakers, and more in-depth student presentations! It was sad to hear about some of the issues, but it also made me very hopeful to hear about these things being addressed and also courses like this where they are openly discussed and take the first step of making these issues known to those who might not know much about them. They all made me a lot more mindful and gave me a majorly broadened perspective of autism, and not just that, a lot of the discussions made me really want to go out and do more to help! Thank you for facilitating this class, I genuinely enjoyed and appreciated it!
• The way all three of them worked seemed flawless and unlike a lot of my Zoom classes there wasn’t any weird pauses. I really loved this class- it wasn’t stressful with the work load and it let me really focus on the material. I am super appreciative that this class was available. Really- thank you.
• I really enjoyed this class. Thank you!!

The Happiness Advantage

I'm reading "The Happiness Advantage" by Shawn Achor and wanted to pen my thoughts on it as I read along. And I'm taking the Happiness Advantage DeCal.

Watch this space for updates as I read more

Introduction: 

I would title this Waiting to be Happy, which kind of reminded me in a strange way of Samuel Beckett's Waiting for Godot. Essentially Acher says we are living milestone to milestone, in the false sense of belief that next milestone will bring us happiness. We think happiness follows success but the reality is the opposite. 

Discovering the Happiness Advantage

In this chapter the author writes of how he saw Harvard as a privilege that can open doors, yet many students lose sight of that, complaining incessantly about the workload. In contrast are the children of Soweto township, a majority of whom loved schoolwork, as many were the first in their family to even get schooling. 

I can personally relate. Berkeley is a privilege that I truly cherish and appreciate. The privilege comes with workload, but isn't that to be expected if you go to a top university.  I was starved of education till age 12. I was in a special education classroom that still taught me kindergarten level skills even at age 12. It was never expected I would get exposure to mainstream academics, get a high school diploma, let alone a college education.  College, and that too Berkeley is a privilege, which adds to my self-esteem, my self-confidence, my dignity. It will open different doors, that are closed in special education. So workload is just a one part of the glorious education. Education itself is a privilege. For this starving mind, the search for knowledge can never end.

Berkeley is my magical place, my Hogwarts and a bonus is that it is the birthplace of the Disability Rights Movement. I look beyond the workload to appreciate the high quality of teaching and the way it expands my perspectives in my world view, how it helps me grow personally, and how it nudges me in my future life towards working on social justice issues and hopefully making into reality positive societal changes too. 

I liked how Acher termed Positive Psychology as "what makes people thrive and excel" rather than bringing the focus on the unhappy and bringing them back to normal.  

I also feel for instance that Autism/Disability is treated as a deficit model which is very devaluing to the autistic. Team meetings during my elementary years  of ABA therapy for instance was invariably dominated with a litany of all that I WOULD NOT or COULD NOT do. Wouldn't it be nice if the child, (who is usually present in these meetings to demonstrate said lack of skill) could also hear a litany of what they CAN DO as well. There are going to be areas that we may never catch up on or never learn. Yet in other areas we may just outstrip our NT peers. It is going to be hard to be average. 

A parallel to Acher's "Cult of the Average" in the autism space is meeting the milestone of "age-appropriate behavior," which in itself is a moving target as society shifts attitudes. 

As Acher's points out we are starved of happiness since we are so focused on the negatives whether it's from external news or internal ourselves. Our brains have been crammed with facts and theory but not how to "maximize the brain's potential to find meaning and happiness".

7 principles

1. Happiness Advantage
2. Fulcrum & Lever
3. Tetris Effect
4. Falling Up
5. Zorro Circle
6. 20 second rule
7. Social Investment

Mental-Cripple

The term "mental cripple" has been used historically as a derogatory term to refer to people with intellectual or cognitive disabilities, and was often used in a way that reinforced negative stereotypes and discrimination against this population.

The term mental-cripple was used to refer to autistics as seen in this 1965 nice-page photo essay in Life Magazine featuring Dr Ivar Loovas and ABA therapy. 

Goodbye Rishi Srinivasan

Rishi the showdog

Goodbye Rishi Srinivasan

Veritable Senior Citizen.

15 dog years, 105 human years.

Golden Fur Shih Tzu.

I miss you, friend.

My 15 yr old Shih Tzu passed away on Sunday night. The house is gonna feel different without him around underfoot and acting as quite the proverbial sibling at times by competing for attention and food.

Meditating in the forest deep.

Flowing hair like a Hermit Rishi.

Expression, a thoughtful contemplation. 

Rishi Srinivasan, an appropriate name.

Rishi came to our house when I was in elementary school. Rishi had this mournful look about him and his long fur made him look like a rishi (hermit) meditating in the forest. So he was aptly named Rishi.  Rishi would accompany my mom to pick me up from Mr Tran’s class those days. My classmate Ryan asked me his name and when I responded, “Rishi,” Ryan immediately exclaimed, “Hari Srinivasan’s dog is Rishi Srinivasan.” So that’s how Rishi became Rishi Srinivasan. The name tag that hung from his collar proudly stated “Rishi Srinivasan” and had our phone number on it.

Sashaying fur like skirts around legs.

Fluffy wagging tail, a furry bouquet.

Former show dog, a handsome dude. 

Pets from strangers, a regular thing.

Tourists, “Can we take a picture with him please?”

Rishi oozed his own unique personality. Rishi had been a show dog before we got him and was a very good looking dog with his flowing hair and the fur around his legs falling like a skirt. His tail when upright looked like a fluffy furry bouquet, which would swish from side to side when he wagged his tail. 

Whenever we’d taken him out to beaches or to Yosemite, folks had always wanted to pet him. Many tourists have wanted to take photos with him. I think in his younger days, Rishi probably knew that he was good looking and was proud of it too. When anyone took a photo, Rishi would join in, give a pose and look right at the camera.  People often mistook Rishi for a girl dog as he was so pretty. I wonder if Rishi minded being called a “her” by people who wanted to pet him.

Communication via Body Language.

Angle and wagging of the tail.

Eyes sparkle or mournful to suit the mood.

His body spoke so much to you.

Rishi communicated a lot just through his body language. The position and angle of his tail itself would be an expression of his delight, his disapproval,  his disappointment or his sorrow.  His eyes too would sparkle with joy or become mournful when he needed a treat from an adult. 

Package of love in under 20 lbs.

Barks stating “I love you, Hari!”

A Happy Dance when seeing me.

Cute paw over paw greeting.

That Rishi absolutely adored me is without a doubt. He’d be camped on the front doormat the entire time I was in school - from the time I got on the school bus to the time the bus returned.  He would hear the bus at the end of the road and come to life joyfully announcing my return. As soon as I stepped in the door, he would do this cute paw over paw on the ground and then skip around in a dance; we called it Rishi’s Happy Dance. 

One time I was on the backyard swing and Rishi was running circles around me happily barking. My therapist asked me, “What is Rishi saying?” expecting me to say “Woof” or something to that effect. Instead, I instinctively responded with “I love you, Hari!”. 

Concern for me when sick.

Vigilant guard during therapy.

Message clear to therapists.

“Take good care of Hari.”

When I was sick, a very concerned Rishi would lie at the foot of my bed, till I got better.  If I said the word "bathroom," in any room in the house, Rishi would run to the nearest adult and give a sharp bark as if to say, “Go attend to Hari.” 

When therapists came over, he would keep an eye on them from his place at the door of the room, making sure they were treating me right. Therapist Cherie has even laughingly assured him, “Rishi, don’t worry, I’m taking good care of Hari.” 

I was taught to say his name in ABA therapy though I already knew his name inside my mind. During my later charter school years, Rishi was my mascot, lying under the table as I did my lessons.

Understood nuances of this extra-special kid.

Alas, the autism factor.

Love could not be stated explicitly.

The quality I think we admire most in dogs is their empathy and Rishi had that in abundance. Intuitively he understood my differences and adapted to it. He learned to work around a lot of my needs and behaviors. For instance, he had really wanted to sleep with me on the bed but I could not handle that, so he just slept in his basket. Instead, he became my music buddy, camping on the bed when I would listen to music on the headphones or during prayer when he would dutifully sit the whole time and listen. 

As a young dog, he would try to intervene when I became agitated but his small size meant he really could not do much. So he learned it was better to just keep out of the way but would come back and sit next to me later to offer comfort.  

Rishi followed me around and showed his love even though I did not always explicitly display outward affection for him. Hugging and petting a dog was not my strong suit as that is a very sensory experience and I have all sorts of sensory dysregulation. Until the very end, I had not found a real comfortable way to physically interact with him, the autism part of me puts many obstacles in the way. 

Autism often means that our behavior and body mannerisms can be contrary to our thought. But I think Rishi just totally understood that and did not demand or expect a reciprocal physical interaction with me. I think he got enough hugs and cuddling from other adults. Rishi also instinctively sensed the times I was more receptive to touching him and when I was not. My touch too has not always been regulated so Rishi just learned to wiggle out if I was a little rough. 

In a world that is filled with naysayers and doubters for us differently-abled folks, it is refreshing to experience such non-judgemental and unconditional love that dogs like Rishi bring. Every disabled child needs to have a dog sometime in their life. 

Every 2 months.

Shaggy bear to shorn sheep.

Sudden new dog in the house.

Autism mind - not reconcile.

Rishi was a hypoallergenic dog with double coated fur. His fur did not shed, rather it grew out so long that his eyes would be completely covered by fur.  So he would go to the dog groomers every couple of months to be bathed and get all his fur trimmed back. He would come back with a bandana and a bow. The transformation would throw me in the early days. A overgrown shaggy dog left at the groomers was picked up a shorn sheep. He would look so different that I would be quite scared of this new dog. I would refuse to go near this new Rishi for a few days. 

Before Grooming

After Grooming

Fruit connoisseur, a banana-loving dog.

Gnaw Carrots, his veggie bone.

Idli, pesarattu, into Indian Food.

Protest bark if not offered a piece.

Rishi loved Indian food like yogurt rice, plain dhal, idlis and salt-free pesarattu. My family is vegetarian and salt and spices were added to most dishes after keeping some aside for Rishi. He loved apples, pears, avocado, boiled potatoes, boiled beans, carrots, moong sprouts, quinoa, and cucumber. He would sit on the kitchen floor and stare mournfully and sometimes make noises of protest in different tones if he was not given a piece. If still nothing was forthcoming, his tail would be stiff and he would give a sharp bark as a reminder that he needed a share. 

He was quite the connoisseur of fruit, and banana was his all-time favorite. If he walked into the room and realized I’d eaten a banana without him (he could still smell the banana in the air), he would whimper sadly.  Rishi could probably eat a whole banana or even two bananas if we let him. A carrot was his daily vegetarian bone and he would gnaw on it all day. 

Even as he has acted like an older sibling in his concern for me, he has also acted like a younger sibling - competing with me for food and attention from my parents. At times the autism part of me has not liked this, though the logical part of my mind has reminded me that he’s just a small wholly dependent dog, and that this was no competition at all. 

Paw on keyboard.

A look that says, “Me too.”

Hari, you are getting a voice.

I want a conversation with you

I think Rishi was thrilled when I first started using AAC. He would come,  place his paw on the computer keyboard and look up as though he too wanted to type out a sentence or two. I bet if he’d been taught to type too, he’d have had a ton to say too. He totally knew the keyboard was somehow helping me. One of my earliest poems was about Rishi.

Had yoga got regard for how darling dogs are
gist of young dogs joy it fortells
joy obvious from its tail, paws, and head.

Understanding silky body moves
God-given gift just for kid
total love in just under twenty pounds.

Noisy licking just unintended
fur very elegant has total appeal
had noted fundamentals of kid.

.

Judicious desire to total caring

Its paw over paw greeting delightful

fur around legs like a skirt.

Beyond holy is his name
brother to kid he has been
forever kid's unquestioning pal.

Unfortunately Rishi started getting health issues. He got some kind of allergy and almost lost all his fur. My folks even tried alternative therapies with him like Homeopathy but he steadily lost weight. I remember saying, “Noisy licking keeps kid awake.” 

Fortunately, a new vet was identified who changed his kibble and meds. My Saroja Paati (grandma) was also visiting and she changed his diet to include lots of boiled vegetables, dhal, and curd rice. Prior to that Rishi had been primarily on wet and dry processed dog food. Rishi prospered so much that the vet asked if it was the same dog during the next visit. Rishi with his glorious fur and sparkle was back. 

Rishi in Raincoat

Alas, old age catches on.

Perpetual allergies, Ear infections.

Vision gone, Hard of hearing.

Body slows down.

Rishi’s earlier illness meant that he’d also developed lifelong allergies. He had to be gluten free, milk free and on special Kangaroo meat kibble and hypoallergenic dog treats for the rest of his life. He was at the vet a lot for some allergy related issue or ear infection and constantly on meds. As he aged, parts of his golden mane started turning grey, (yes, even dogs get grey hair). 

In the last few years, Rishi also started slowing down. He slept most of the day. His sight started deteriorating till he became almost completely blind. Apparantely Shih-Tzu's are genetically prone to eye issues. He was on eyedrops all the time so his eyes would not dry out. He knew his way around our old house so it was not that obvious. 

His sight issues became very noticeable when we moved to a new house. Poor Rishi would bump into things and not know how to navigate the steps in the backyard of our new place. His poor vision meant he would not see my sudden impulsive body moves. He no longer constantly followed me around and our interaction dwindled even more. 

Two years ago, he developed a tumor and had a toe surgically removed. He stopped barking when the front doorbell rang; perhaps he became hard of hearing. But till the last day, he would come running for food - especially if he could smell banana in the air. 

Rishi’s condition really went south last weekend. He could not even hold his neck straight. He had to be hand fed as he could not eat his hard kibble. Good thing was that he still ate his favorite banana the morning before he died.  By Sunday night he was in bad shape. My folks did their best to shield me from what was happening but I did hear two sharp cries of pain and his loud raspy breathing on Sunday night. He stopped breathing just before midnight. We took him to the vet to be cremated and will get his ashes in two weeks. 

I’m not quite sure of how I feel now. I think I’m still trying to process. I know I am sad; after all, Rishi had been a huge part of my life for 15 years. There are more emotions swimming around inside but no words for them just yet. I am gonna miss Rishi’s cute shenanigans, his unconditional love and his presence around the house. 

Rishi was a spiritual dog for he loved prayer and vibuthi. 
Go now and rest at God’s feet, Rishi Srinivasan, as your journey comes to an end.

Rishi's Ashes were immersed at East Beach under the Golden Gate Bridge