Racial Bias in Autism

Correll et al. (2002), points to societal judgements made about the Black community; that they are somehow less deserving. Goff et al. (2014) highlights racial bias in that Black children are thought to be less innocent than their White counterparts. What this racial bias translates to is substantial delays in the diagnosis of ASD for Black children, after the parents initially expressed concerns about the child’s development, despite the parents having health insurance (Costantino et al., 2020)

Read on here.....[link]

1:36 is the new ratio

The CDC just announced that the new dx ratio is 1:36 [Read article]

To give you perspective, back when I was dx in childhood it was around 1:151, when I started undergrad it had come to 1:88. Just during my undergrad, the numbers progressed from 1:64 to 1:54 and by the end of my undergrad, it was 1:44.

And

• (But of course). Autism is reported to occur in all racial, ethnic, and socioeconomic groups. [Read article]
• About 1:6 (17%) children aged 3–17 years were diagnosed with a Dev Disability (autism, AHHD, blindness & CP) [Read summary]
• ASD is more than 4 times more common among boys than among girls. [Read article]

The new ratio simply can't be just due to increased dx capabilities or awareness or more adults being dx. What else is going on? We need to be investigating this. 

From https://www.cdc.gov/ncbddd/autism/data.html
 

M-CHAT Modified Checklist for Autism in Toddlers

Lexicon [Measures] - M-CHAT 

The Modified Checklist for Autism in Toddlers, Revised (M-CHAT-R) is a screening tool to identify early signs of autism  in toddlers. The M-CHAT-R is a caregiver-reported questionnaire that assesses the presence of behaviors associated with ASD in toddlers aged 16 to 30 months. It is intended to screen for potential developmental concerns and determine the need for further evaluation.

Limitations

The M-CHAT-R has some limitations, including the potential for false positives or false negatives, as it is a screening tool rather than a diagnostic instrument. It relies on caregiver-reported information, which may be subject to biases or inaccuracies.

Measure, Scoring & Interpretation
The M-CHAT-R is typically administered by a clinician or early intervention specialist.  It consists of 20  items that cover different areas of development, including social communication, joint attention, play, and repetitive behaviors. Caregivers indicate whether the behaviors are observed in their child or not (scored as 1 for Yes and 0 for No). The total score is calculated by summing the scores across all items. 

The M-CHAT-R also includes a follow-up interview with additional questions to further explore areas of concern. Scoring and interpretation guidelines are provided with specific cutoff scores to identify children who may be at risk for ASD and require further evaluation.

History, Limitations, and Revisions
The M-CHAT-R is an updated version of the original M-CHAT,. It was developed by Diana Robins, Deborah Fein, and Marianne Barton in 2009. 

Citation:
Robins, D. L., Fein, D., & Barton, M. L. (2009). The Modified Checklist for Autism in Toddlers, Revised (M-CHAT-R). Retrieved from https://mchatscreen.com/wp-content/uploads/2021/07/M-CHAT-R.pdf

CARS - Childhood Autism Rating Scale

Lexicon [Measures] - CARS

The Childhood Autism Rating Scale (CARS) a behavior observation scale intended to help diagnose autism and plan interventions/therapy. CARS is administered by a clinician through direct observation and interactions and involves structured and semi-structured activities to elicit specific behaviors. The tool is designed for children aged 2 years and older.

Limitations:

• CARS may not be suitable for individuals with co-occurring conditions or for assessing adults with autism.
• CARS is a subjective assessment tool that relies on the judgment of the observer which means inter-rater reliability may vary depending on the experience and training of the clinician.
• Focuses primarily on behaviors associated with autism and may not capture the full range of a child's abilities or challenges.
• Does not provide a definitive diagnosis of autism but rather serves as a quantitative measure of symptom severity.

15 Functional domains rated in CARS

1. Relating to People: Ability to engage in reciprocal social interactions, such as sharing enjoyment, eye contact, and response to others' emotions.
2. Imitation: ability to mimic the actions, expressions, or sounds of others.
3. Emotional Response: Assesses the appropriateness and variety of the child's emotional expressions and responsiveness to emotional cues from others.
4. Body Use: physical movements and coordination.
5. Object Use: ability to play with toys and use objects in a 'socially appropriate' manner
6. Adaptation to Change: Flexibility and response changes in their environment or routine.
7. Visual Response: visual attention and responses to sounds and spoken language
8. Listening Response: attention and reactions to auditory stimuli.
9. Taste, Smell, and Touch Response and Use: responsiveness to different sensory stimuli
10. Fear or Nervousness: reactions to potentially fear-inducing or anxiety-provoking situations.
11. Verbal Communication: appropriateness and usefulness of the child's verbal communication.
12. Non-verbal Communication: appropriateness and usefulness of the child's non-verbal communication.
13. Activity Level: physical activity level during the assessment.
14. Level and Consistency of Intellectual Response: problem-solving abilities and the consistency of their intellectual responses.
15. General Impressions: observer's overall impression of the child's behavior during the assessment.

The items are scored on a scale of 1-4, with 1 representing no "abnormality" and 4 as severe abnormal (I personally cringe at this language with terms like "abnormal" which makes us sound like societal misfits and outcasts). Total score ranges from 15-60; scores below 30 suggest absence of autism or very mild symptoms; 30-36 score indicate mild-moderate autism and scores above 36 indicate severe autism. 

History: CARS was developed by Eric Schopler, Robert J. Reichler, and Barbara Rochen Renner and was first published in 1988. 

Reference:
Schopler, E., Reichler, R. J., & Renner, B. R. (1988). The Childhood Autism Rating Scale (CARS). Los Angeles: Western Psychological Services.

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.

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]

DSM vs ICD

Lexicon [Measures]-DSM & ICD

The DSM (Diagnostic and Statistical Manual of Mental Disorders) and ICD (International Classification of Diseases) are two different systems used to classify mental disabilities. 

• The DSM is used in the US and the ICD is used internationally. 
• The latest version of the DSM is the DSM-5-TR, which was published in March 2022 (revision of the 2013 DSM-5). The latest version of the ICD is ICD-11. It was adopted by the World Health Assembly in 2019 and came into effect on January 1, 2022.
• The DSM is more focused on clinical dx, while the ICD is more focused on public health.

• Both systems use a multiaxial approach, which means that they assess mental disabilities on multiple dimensions, such as symptoms, severity, and functional impairment.
• Both systems are updated periodically to reflect new research and understanding of mental disorders. The DSM is more detailed and specific and updated more frequently than ICD. 

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

ICD - International Classification of Diseases

Lexicon [Measures] - ICD

The ICD (International Classification of Diseases), an international diagnostic tool by the WHO, classifies autism as a neurodevelopmental disorder characterized by deficits in social interaction and communication, and repetitive behaviors or interests. The USA primarily uses the DSM (Diagnostic and Statistical Manual of Mental Disorders) system for diagnosis.

PlainSpeak: The ICD (International Classification of Diseases), a global guide used by doctors, defines autism as a condition with social interaction and communication challenges, and repetitive behaviors or interests. In the USA, doctors mainly use the DSM (Diagnostic and Statistical Manual of Mental Disorders) system for diagnosis.

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

DSM-5 Diagnostic Statistical Manual

The DSM-5, a diagnostic tool published by the American Psychiatric Association, classifies autism as a neurodevelopmental disorder characterized by persistent deficits in social communication and interaction, along with restricted, repetitive patterns of behavior, interests, or activities.

PlainSpeak: The DSM-5, a guide used by doctors to diagnose mental health conditions, defines autism as a condition where people have challenges with social interactions and communication, and often have specific, repetitive behaviors or interests.

Related Posts [DSM],[ICD],[RDoc],[Measures],[Diagnosis]