Cognitive dissonance on ADOS

I was in an ADOS training this week. I can kind of get at the intended usefulness of this instrument. Its a screening and diagnostic measure that is widely used for Autism.

But disappointed at a few things that caused a lot of cognitive dissonance for me.

Video of kid who repeated back 2-3 words of one question of the clinician before responding - behavior marked as “echolalia”. But NT folks do this all the time, eg: common tactic in interviews as it buys you time to think. In the NT world this is called "active listening" Yet given as a negative label of echolalia in an autistic child instead of useful social strategy.

"Severe autism has reduced in the last 40 years." Not accurate!! It's just that autism includes many other dx since DSM-V and expanded to accommodate all ages, resulting in a bigger pool, so obviously that %severe looks smaller.

The type of ADOS module used depends on the oral level of the child. Module 1 is the one used for non-verbal/ minimally verbal kids.  Seemed to imply that oral communication mandatory for ADOS, cannot be coded if child uses AAC.

Justification given is that use of AAC means

• "It changes nature of eye contact." 
• "Are they modulating eye contact in some way"
• "It changes the nature of what is happening." 
• They are not making eye contact when they are looking at device.
• They are not doing social engagement with you while looking at device
• There may be some pre-made phrases on device they are making use of

Seems like a fundamental problem if you run the module 1 on a child but say , oh by the way, you can’t communicate unless you can talk with your mouth. 

So my question was whether ADOS then is not applicable to the 20-30% of autistics who have no to little spoken language.

Apparently ‘gestures’ are allowed but how much can you communicate with gestures unless you are fluent with ASL. And it is likely that kids with oral communication issues usually also have motor apraxia so their gesturing ability will not good as well.

Related Posts

• Screening & Diagnostic Measures
• Related Posts on ADOS

DSM v ADOS

Lexicon [Measures] DSM, ADOS

DSM-5-TR (latest version of DSM) and ADOS-2 (Autism Diagnostic Observation Schedule, Second Edition)  are two distinct tools used in assessment and dx of autism.

DSM-5-TR 

• Diagnostic manual that outlines the criteria for diagnosing ASD, including the presence of social communication deficits and RRB. 
• Serves as a reference for clinicians and researchers in making diagnostic decisions and ensures consistency in the diagnosis of ASD.

ADOS-2 

• Standardized observational assessment tool designed to aid in the diagnosis of ASD. 
• Administered by a trained professional and involves direct interaction with the individual  
• consists of a series of activities and social scenarios that allow the examiner to observe and evaluate the individual's communication skills, social interaction, play, and RRB. 
• It helps in determining whether an individual meets the diagnostic criteria for ASD and provides information to inform intervention and treatment planning.

ADOS-2 can be utilized as part of the diagnostic process, providing information to support the dx under DSM-5. Both tools are commonly used together to aid in the assessment and diagnosis of Autism Spectrum Disorder.

Related Posts: [DSM],[ADOS],[Measures]

Screening / Diagnostic / Psychological Measures

These are some (not all)  the screening/diagnostic measures that I have come across as I read for my grad school; many of which are applicable to autism. Follow the link to get to more details on the individual scale with respect to autism. 

Clinical Dx

• DSM-V-TR  provides dx  criteria and guidelines for autism
• DSM is used in the US, ICD is used internationally

Screening for Autism

• 
  
• ADOS, DSM 
• ADI-R - Autism Diagnostic Interview 
• AQ - Autism Quotient 
• BAPQ - Broad Autism Phenotype Questionnaire 
• CARS - Childhood Autism Rating Scale 
• CATI - Comprehensive Autism Traits Inventory
• GARS - Gillian Autism Rating Scale
• M-CHAT-R: Modified Checklist for Autism in Toddlers
• SRS - Social Responsiveness Scale
• STAT - Screening Tool for Autism in Toddlers and Young Children

IQ Tests

• Why IQ Testing is especially problematic in the Autistic Population
• WASI II 
• WISC-V - Wechsler Intelligence Scale for Children 
• WAIS IV -  Wechsler Adult Intelligence Scale 

Communication and Behavior

• SCQ - Social Communication Questionnaire

• CSBS - Communication and Symbolic Behavior Scale 
• EOWPVT: Expressive One-Word Picture Vocabulary Test 

Behavioral /Developmental

• ABC - Aberrant Behavior Checklist
• ASQ: Ages and Stages Questionnaires
• ABAS-3 - Adaptive Behavior Assessment System 
• ASEBA - Achenbach System of Empirically Based Assessment 
• IPASE - Psychotic-Like Anomalous Self-Experiences 

ADHD

• SWAN - Strengths and Weaknesses of ADHD Symptoms and Normal Behavior  

Tests of Empathy

• TASIT: The Awareness of Social Inference Test 

Sensorimotor Domain 

• SSTPQ - The Self, Space, and Time Perception Questionnaire 
• GSQ - Glasgow Sensory Questionnaire

Other

•  NASA-TLX (Task Load Index)

Post is in progress. 

A Simple Guide to the DSM and Autism

Lexicon [Measures] - DSM

PlainSpeak. In Plain Language for the Lay Reader

The Diagnostic and Statistical Manual of Mental Disorders (DSM) is a big book that doctors and mental health professionals use to diagnose and understand mental health conditions. 

Here’s a quick history of the DSM, focusing on how it has changed its understanding of autism over the years.

The Early Years: DSM-I and DSM-II

• DSM-I (1952): The first edition of the DSM didn’t include autism. Back then, people didn’t really know about autism.
• DSM-II (1968): The second edition mentioned “schizophrenic reaction, childhood type,” because people thought autism was related to childhood schizophrenia.

Autism Emerges: DSM-III and DSM-III-R

• DSM-III (1980): This edition was a big deal because it introduced "Infantile Autism" as its own category. This was the first time autism was seen as different from schizophrenia.
• DSM-III-R (1987): The revised edition changed the name to "Autistic Disorder" and provided more detailed criteria for diagnosing it, recognizing a wider range of symptoms.

Refining the Diagnosis: DSM-IV and DSM-IV-TR

• DSM-IV (1994): This edition added more details. Autism was now part of a group called Pervasive Developmental Disorders (PDD), which included:

  • Autistic Disorder
  • Asperger’s Disorder
  • Rett’s Disorder
  • Childhood Disintegrative Disorder
  • Pervasive Developmental Disorder-Not Otherwise Specified (PDD-NOS)

  This allowed doctors to better identify different types of autism.

• DSM-IV-TR (2000): This version didn’t change much but updated and clarified the existing information.

The Modern Era: DSM-5

• DSM-5 (2013): The most recent edition made major changes to how autism is diagnosed:
  • Autism Spectrum Disorder (ASD): The DSM-5 combined all the previous types of autism into one diagnosis called Autism Spectrum Disorder (ASD). This reflects the idea that autism is a single condition with different levels of severity.
  • Two Domains: The criteria for diagnosing ASD are now based on two main areas:
    1. Social Communication and Interaction: Problems with social communication and interaction in different situations.
    2. Restricted, Repetitive Behaviors: Repetitive movements, strict routines, very focused interests, and unusual reactions to sensory experiences.
  • Severity Levels: The DSM-5 includes levels to show how much support someone with ASD might need:
    • Level 1: Requires support
    • Level 2: Requires substantial support
    • Level 3: Requires very substantial support
  • Specifiers and Comorbidities: Doctors can add more details about a person’s ASD, like if they have intellectual or language difficulties. The DSM-5 also recognizes that people with ASD often have other conditions like anxiety, depression, or ADHD.

Summary

The DSM has changed a lot over the years to better understand and diagnose autism. From not recognizing autism at all to seeing it as a broad spectrum of conditions, these updates help doctors and families understand and support people with autism better.

Related Posts: [DSM], [Diagnosis],[Measures]

SCQ - Social Communication Questionnaire

Lexicon [Measures] - SCQ 

The Social Communication Questionnaire (SCQ) is a caregiver-reported questionnaire that evaluates social communication and interaction patterns in individuals suspected of being autistic. It was derived from the Autism Diagnostic Interview-Revised (ADI-R). It is designed for use with children and adults who have a mental age [see post on why "mental age" is problematic] of at least 2 years and 6 months. It is often used as a screening tool in clinical and research settings. [See posts on other Screening/Diagnostic Measures].

Limitations:

• The SCQ is a screening tool and should not be used as a standalone diagnostic instrument. A comprehensive evaluation by a trained clinician using multiple assessment methods is necessary for a formal autism diagnosis.
• Co-occurring Conditions: Many individuals with ASD may have co-occurring conditions such as intellectual disabilities, language impairments, ADHD, anxiety, or sensory processing difficulties. The SCQ focuses specifically on social communication and interaction and may not fully capture the range of challenges associated with co-occurring conditions such as language challenges, ADHD, anxiety or sensory processing.
• Caregiver reports are subject to biases and inaccuracies, as they rely on the caregiver's observations and interpretations of the individual's behaviors.
• Caregivers' ability to accurately report on specific social communication behaviors and experiences of nonspeaking autistics may be limited.
• The SCQ is not designed to assess other developmental disabilities apart from ASD.

A Brief History of the DSM and Autism

Autism Lexicon [Measures] - DSM

A Brief History of the DSM and Autism 

The Diagnostic and Statistical Manual of Mental Disorders (DSM) is a critical tool used by mental health professionals worldwide to diagnose and classify mental disorders.

The Modern Era: DSM-5

• DSM-5 (2013): The most recent edition introduced significant changes to the diagnosis of autism. Key updates include:

• Autism Spectrum Disorder (ASD): The DSM-5 combined the previously separate diagnoses of Autistic Disorder, Asperger's Disorder, Childhood Disintegrative Disorder, and PDD-NOS into a single diagnosis: Autism Spectrum Disorder (ASD). This change reflects the understanding that these conditions are part of a single continuum with varying degrees of severity.

• Two Domains: The DSM-5 criteria for ASD are based on two domains instead of three. These are:

• Social Communication and Interaction: Persistent deficits in social communication and social interaction across multiple contexts.

• Restricted, Repetitive Patterns of Behavior, Interests, or Activities: This includes repetitive movements, insistence on sameness, highly restricted interests, and hyper- or hypo-reactivity to sensory input.

• Severity Levels: The DSM-5 includes severity levels to indicate the level of support needed: Level 1 (requiring support), Level 2 (requiring substantial support), and Level 3 (requiring very substantial support).

• Specifiers and Comorbidities: The DSM-5 allows for specifiers to provide additional detail about the presentation of ASD, such as the presence of intellectual or language impairments, and acknowledges common comorbidities like anxiety, depression, and ADHD.

Refining the Diagnosis: DSM-IV and DSM-IV-TR

• DSM-IV (1994): This edition further refined the classification of autism under Pervasive Developmental Disorders, which included Autistic Disorder, Asperger's Disorder, Rett's Disorder, Childhood Disintegrative Disorder, and Pervasive Developmental Disorder-Not Otherwise Specified (PDD-NOS). This allowed for greater differentiation among various forms of autism.

• DSM-IV-TR (2000): The text revision did not significantly change the criteria but provided updated information and clarified diagnostic guidelines.

The Emergence of Autism: DSM-III and DSM-III-R

• DSM-III (1980): This edition marked a significant shift by introducing "Infantile Autism" as a distinct category under Pervasive Developmental Disorders (PDD). This was the first time autism was recognized as separate from schizophrenia.

• DSM-III-R (1987): The revised edition expanded the criteria and changed the term to "Autistic Disorder," providing more specific diagnostic criteria and acknowledging a broader range of symptoms.

The Early Years: DSM-I and DSM-II

• DSM-I (1952): The first edition of the DSM did not include autism. At the time, autism was not widely recognized as a distinct condition.

• DSM-II (1968): The second edition included a diagnosis of "schizophrenic reaction, childhood type," reflecting the early belief that autism was related to childhood schizophrenia.

A Simple Guide to the ICD and Autism: Understanding ICD-11

Lexicon [Measures] - DSM & ICD

PlainSpeak. In Plain Language for the Lay Audience

While the USA uses the DSM, most of the world uses another tool called the ICD. The ICD, or International Classification of Diseases, is a guide created by the World Health Organization (WHO) to help doctors all over the world diagnose and understand diseases and health conditions. 

The Early Years: ICD-6 to ICD-9

• ICD-6 (1948): The sixth edition of the ICD was the first to include mental disorders, but it didn’t mention autism. Autism wasn’t recognized as its own condition back then.
• ICD-7 (1955) and ICD-8 (1965): These editions added more mental disorders but still didn’t have specific criteria for autism. Autism was often mixed up with other psychiatric conditions.
• ICD-9 (1979): This edition started to recognize autism under a broader category called "Pervasive Developmental Disorders" (PDD), showing that people were beginning to understand autism better.

Defining Autism: ICD-10

• ICD-10 (1992): This edition made a big change by giving more detailed classifications for autism. Autism was listed under "Pervasive Developmental Disorders" (F84). It included:
  • Childhood Autism: Kids with problems in social interaction, communication, and repetitive behaviors.
  • Atypical Autism: Similar to childhood autism but with unusual age of onset or different symptoms.
  • Asperger's Syndrome: Problems in social interaction and repetitive behaviors, but no significant delays in language or thinking.
  • Other PDDs: Including Rett's Syndrome and Childhood Disintegrative Disorder.

The Modern Era: ICD-11

• ICD-11 (2018): The latest edition made important changes to how autism is diagnosed, similar to the DSM-5 used in the USA. Key updates include:
  • Autism Spectrum Disorder (6A02): The ICD-11 combined all previous types of autism into one category: Autism Spectrum Disorder (ASD). This shows that autism is a spectrum with different levels of severity and symptoms.
  • Two Core Domains:
    • Deficits in Social Communication and Social Interaction: Ongoing difficulties in social communication and interaction.
    • Restricted, Repetitive Patterns of Behavior, Interests, or Activities: Repetitive movements, strict routines, very focused interests, and unusual responses to sensory experiences.
  • Severity Specifiers: These help to indicate how severe the condition is and how much support a person might need in daily life.
  • Associated Features: This allows for noting extra features like intellectual development disorders and language impairments to give a fuller picture of each person’s unique situation.

Impact of ICD-11 on Autism Diagnosis

The changes in ICD-11 help make autism diagnoses more accurate and consistent worldwide. By recognizing autism as a spectrum disorder, the ICD-11 understands that people with autism can have a wide range of symptoms and levels of severity. This approach supports more personalized and appropriate treatments, tailored to what each individual needs.

As our knowledge about autism grows, the ICD will keep evolving to make sure people with autism get the right diagnosis and support. This evolution helps ensure that everyone with autism can live a fulfilling life.

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...

Aspie - Aspergers

 

Before the release of the DSM-5 in 2013, autism and Asperger's Syndrome (or Aspie) were considered distinct diagnostic categories within the broader category of pervasive developmental disorders (PDD). 

Diagnostic Criteria

1. Autism (Autistic Disorder):

   • Social Interaction: Marked impairments in social interaction, including difficulties with nonverbal behaviors, developing peer relationships, and understanding social cues.
   • Communication: Significant delays or abnormalities in language development, including a lack of spoken language or difficulty sustaining a conversation.
   • Behavior: Presence of restricted, repetitive, and stereotyped patterns of behavior, interests, or activities.
   • Onset: Symptoms typically apparent before the age of three.

2. Asperger's Syndrome:

   • Social Interaction: Similar to autism, Aspies exhibit significant difficulties in social interactions and understanding social norms.
   • Communication: Unlike autism, there are no significant delays in language acquisition. Aspie's often have fluent speech and good verbal skills but may struggle with the pragmatic use of language (e.g., understanding humor or sarcasm).
   • Behavior: Similar to autism, there are restricted and repetitive patterns of behavior and interests.
   • Cognitive Development: No significant delay in cognitive development or self-help skills. In fact, individuals often have average to above-average intelligence.
   • Onset: Symptoms might not be as apparent at an early age, often becoming noticeable when social demands increase.

Functional Impact

• Autism: Often associated with more significant challenges across multiple areas of functioning due to the presence of language delays and more pronounced social and behavioral difficulties.
• Asperger's Syndrome: Typically associated with less severe challenges in early childhood due to intact language and cognitive development. However, social difficulties become more apparent in later childhood and adolescence.

Evolution in DSM-5

With the introduction of DSM-5, the separate diagnoses of autism, Asperger's Syndrome, and other related disorders (like Pervasive Developmental Disorder-Not Otherwise Specified, or PDD-NOS) were unified under the single diagnosis of Autism Spectrum Disorder (ASD). This change was made to reflect the spectrum nature of the condition, acknowledging that these conditions share core features but vary in severity and expression.

Rationale for Change

• Continuum of Symptoms: The change recognizes that autism-related conditions exist on a spectrum, with varying degrees of severity and functional impact.
• Clinical Utility: Simplifies diagnosis by reducing the complexity and potential inconsistencies associated with distinguishing between related conditions.
• Research and Treatment: Facilitates more unified research efforts and the development of interventions that can be tailored to the individual’s specific needs, regardless of the previous diagnostic category.

------------

Plain Language Version

Before 2013, autism and Asperger’s Syndrome (sometimes called "Aspie") were considered separate diagnoses within a group of conditions called pervasive developmental disorders (PDD).

Diagnostic Criteria

Autism (Autistic Disorder):

• Social Interaction: Big challenges with social skills, like reading body language, making friends, and understanding social cues.
• Communication: Delays in talking and language use, sometimes not talking at all or having trouble keeping a conversation going.
• Behavior: Repetitive movements and routines, and strong interests in specific things.
• Onset: Signs usually show up before the age of three.

Asperger’s Syndrome (Aspie):

• Social Interaction: Also have difficulties with social skills and understanding social norms, similar to autism.
• Communication: No major delays in learning to talk. Aspies usually have good language skills but may struggle with using language in social situations, like understanding jokes or sarcasm.
• Behavior: Similar repetitive movements and strong interests as in autism.
• Cognitive Development: No delays in learning or taking care of themselves. Often have average or above-average intelligence.
• Onset: Signs may not be noticeable until social situations become more demanding, often in later childhood or adolescence.

Functional Impact

Autism: Often has more severe challenges due to language delays and more noticeable social and behavioral difficulties.

Asperger’s Syndrome: Usually has fewer challenges in early childhood because of good language and learning skills, but social difficulties can become more apparent later on.

Changes with DSM-5

In 2013, the DSM-5 combined autism, Asperger’s Syndrome, and other related conditions (like PDD-NOS) into one diagnosis called Autism Spectrum Disorder (ASD). This change was made to show that these conditions are part of a spectrum, meaning they share similar features but vary in how severe they are.

Why the Change?

• Continuum of Symptoms: Autism-related challenges are seen as part of a spectrum with different levels of severity and impact.
• Simplifying Diagnosis: Combining the conditions makes diagnosing easier and reduces confusion.
• Better Research and Treatment: It helps scientists and doctors create better treatments and support that fit each person’s specific needs.

RDoc vs DSM in the context of Autism

Lexicon [Measures] RDoc, DSM

RDoc v DSM

The RDoC (Research Domain Criteria) & DSM  (Diagnostic and Statistical Manual of Mental Disorders) are both tools used in the field of mental health, but they approach the understanding and classification of mental disorders from different perspectives. 

DSM is a clinically focused tool for diagnosing mental disabilities based on symptomatic criteria, while RDoC is a research-focused framework aiming to understand mental health disorders from a multidimensional, biopsychosocial perspective

• DSM : Published by the American Psychiatric Association. It provides clear diagnostic categories based on observable behavior and reported symptoms. However, the DSM is often criticized for its categorical approach, where a patient either has or does not have a particular disability.
• RDoC : Developed by NIMH. The RDoC is not a diagnostic tool;  it's a research framework. RDoC aims to integrate many levels of information (from genomics and circuits to behavior) to better understand basic dimensions of functioning that span the full range of human behavior . The goal of RDoC is to provide a more dimensional approach to understanding mental disabilities, based on neuroscience and behavioral science, rather than purely on observable symptoms.

Autism and RDoC

Autism, under the RDoC framework, is seen not as a single, homogeneous disorder but as a spectrum that includes a variety of symptoms and behaviors that can vary widely in challenge-level and impact-level. This aligns with the current understanding of autism as a "spectrum."

For example, RDoC organizes its research around several "domains" of human psychological functioning, including cognitive processes, social processes, and arousal/regulatory systems, all of which are areas where autistics may show differences. Within these domains, RDoC further identifies specific constructs - like social communication and perception, or cognitive systems related to attention and perception - that could be targets for research into the biological and behavioral underpinnings of autism.

Challenges in implementing RDoC
There are potential challenges to implementing RDoC principles more fully into research or clinical practice for autism.

• Trying to map a heterogeneous disability like Autism onto the specific domains and constructs defined by RDoC.
• Current lack of practical tools and measures available to clinicians, to assess the various domains and constructs defined by RDoC in a routine clinical setting. This includes standardized measures for assessing constructs like social communication and perception, or the cognitive systems related to attention and perception that are relevant to autism.
• Need for further research: to validate the constructs and domains defined by RDoC, and to understand how these relate to the symptoms and behaviors associated with autism. We need a deeper understanding of the relationships between the biological, psychological, and behavioral aspects of autism to fully implement the RDoC approach.
• Changing Existing Systems & Acceptance in the Clinical and Research Community:  Current diagnostic systems like DSM-5 are deeply rooted in many aspects of mental health care. It must gain acceptance not only among researchers, but also among clinicians, educators, and families. This requires education and evidence that the RDoC approach can improve outcomes for autistics.

Related Posts: [DSM], [ICD], [RDoC], [Diagnosis],[Measures]

Autism DeCal Fall2020

Class 5: 10/5/2020

Today we covered common therapies used in Autism. 

Our Guest speaker was Dr Lawrence Fung who heads the Stanford Neurodiversity Project

Class 4: 9/28/2020

Today we covered common therapies used in Autism. 

Our Guest speaker was Noor Pervez from ASAN to speak on intersectionality. 

Class 3: 9/21/2020

Today we wrapped up our "Law Enforcement" Topic and covered "Autism in the Context of the Disability Rights Movement."

Our guest speaker was Prof Steve Hinshaw with another powerful talk on Stigma.

Class 2: 9/14/2020

In today's Mini Lecture portion, we focused on Autism interaction with Law Enforcement

To prep students, we asked the question

We will be wrapping up this topic in the next class as we got ready for the Student Presentations and the Guest Speaker. 

We had our first Guest Speaker on - Dr Clarissa Kripke on Sensorimotor Issues in Autism. Some tech difficulties as our speaker was not able to access our Zoom. So switched to Google Hangouts!! 

Survey Q: What interests you about this class

• A friend of mine works with kids with autism and I would like to educate myself more on this topic so that I can be more well versed in this subject area when i talk to them. I would like to learn about pretty much anything y'all find most important, I'm just a dude trying to learn as much as possible.
• It is interesting to learn about the spectrum of autism and how individuals cope with certain levels of the spectrum.
• I am interested in learning more about adults with autism and the kind of support needed and barriers experienced later on in life. I also know a little about who women and girls are less likely to be diagnosed with autism until later on in life due to the way ASD is gendered, but I am curious to learn more about that.
• I hope to build my awareness and knowledge of autism so that I can better understand and be an ally to those around me. I feel that autism is often stigmatized as a disability, and I want to learn more about how we can combat this thinking. I want to learn what symptoms and behaviors are associated with autism.
• - I am interested on how I can be more cognizant of those on the spectrum. Additionally, as an intended disability studies minor, I want to learn more about personal stories by listening to guest speakers etc.
• I am very interested in taking this course because of my interest in better understanding disabilities on many levels. I am aiming to pursue a career in disability research but believe heavily in the importance of understanding disabilities on a personal / social level before having the right to study them on a molecular / neurological level.
• As being on the spectrum, I want to learn more about the condition and maybe provide some insight into the daily life of an autistic person.
• I want to learn more about the autism spectrum, and what it looks like to proactively involved.
• more information about life with autism and advantages or disadvantages
• As a Psychology major, I find that I haven't actually learned much about autism in my classes, although I've learned about mood disorders, intellectual disabilities, and learning disorders. So, I'd like to learn more about the realities of autism and treatment options available.
• I would like to get a more holistic view about autism from different disciplines as well as hear from the guest speakers!
• why they have tendency too hyperfixate. how to navigate social situations with them.
• I've seen autism depicted in media, and am curious to see if their depictions are accurate, and i just want to understand and be able to empathize more with people who do have autism.
• I've always wanted to take a class focused on Autism, and I came to know of this class through Obama's Instagram ;) I would like to learn more about Autism through the perspective of someone with Autism. I also would like to learn more about the biological basis behind autism. Overall, I am most excited to meet more people and hear everyone's various experiences.
• Just want to gain some general understanding about Autism to be able to broaden my sensitivity to and understanding of the needs of neurodiverse people :)
• I'd like to hear about what it's like to be autistic from someone who has autism and how to be a helpful ally.
• I am pursuing the disability studies minor and would like to educate myself more around the topic of disability. I think this will be a great way to know more about autism as we are taught very little about it in school.
• I would like to meet other people on the spectrum, hear there stories / experience and have a safe place to share my own.
• I'm interested in this course because I've learned a couple of things about the autism spectrum from my child development and psychology classes, but not a significant amount, and I guess I've just realized recently that I'm relatively ignorant on the subject. I'd like to change that. I don't have anything specific in mind to learn more about but I'm very excited to learn more!
• I would love to learn more about autism alongside disability justice. I took a city planning for disability course a while back and it was very valuable and I learned a lot!
• I would like to educate myself about people with autism. I took a course with professor Hinshaw and it was really interesting and I would like to learn more about Autism.
• I joined this class because I have a family member who was recently diagnosed and I wanted to learn as much as I could about Autism Spectrum Disorder so that I could support that family member. I'm interested in learning about family dynamics and learn more about the current research on ASD.
• I would like to better understand autism and learn how I can positively impact the community.
• I have a twin brother who was diagnosed with ASD in the 5th grade. From this course I want to learn more about ASD in hopes to better understand my brother. My brother is considered "high functioning", so I'm really curious how doctors diagnose someone with Autism and how they decide if they're low/high functioning. My brother has also struggled with IEP accommodations growing up, so I would like to know how disability programs work at public schools and how schools decide if a student qualifies for IEP/DSP accommodations.
• I study neurodevelopment with relevance to ASD. I would like to learn more about ASD from perspectives beyond my research area, particularly disability rights/advocacy and intersectionality. I am hoping to have a better understanding of how I as a researcher can interact with the autism community in a positive way that doesn’t cause harm. I’m hoping this class will give me the space to think about ways to center the interests and needs of folks with autism in my research and beyond.
• Really excited for this class
• It’s felt like talking about autism was taboo, but I really want to understand what the experience is and how to support folks who may have autism.
• Excited about the reading list you put together. 

Class 1: 9/31/2020

A little weird doing this all remote but we adapt for the times. Also have a grad student auditing the class which is kind of cool. 

Registration for the DeCal

 Registration for the 1-unit, seminar-style, 1:54 Autism Spectrum Disorders Decal is now open. Class has filled up very fast in past semesters.

https://classes.berkeley.edu/content/2020-fall-psych-198-006-grp-006

Course #23457 Enroll through CalCentral

Timings: Monday 5-7pm.

Class Starts: Aug 31, 2020

Class limit: 40

Contact: SpectrumDeCal@gmail.com

The Autism DeCal got featured on President Barack Obama's Instagram in July on 30th anniversary of the Americans with Disabilities Act

https://www.instagram.com/p/CDKTNl7gtZD/ (2nd story)

About the Decal: In this DeCal, not only will you learn about possible neurobiological roots of ASD, you will also discover its research beginnings, possible intervention therapies, family dynamics, law, the role of technology, media portrayals, child and adult life, stigma, public outreach, and public awareness.

The primary goal of this course is to stimulate and encourage a deeper understanding about individuals who meet the DSM-5 criteria for ASD and their families.

Instructors: Hari Srinivasan, Eli Oh, Helen Lee, Kate Bierly