Introduction
Autism spectrum disorder (ASD) is a complex and diverse condition that affects how people communicate, interact, and behave. The diagnosis of ASD is based on behavioral observations and reports, not on biological markers. Therefore, it is important to have clear and consistent criteria for defining and identifying ASD across different settings and cultures.
The International Classification of Diseases (ICD) is a system that provides standardized codes and definitions for health conditions. The 11th revision of the ICD (ICD-11) was released in 2018 and will be implemented in 2024. ICD-11 introduces some major changes in the way ASD is conceptualized and diagnosed, compared to the previous version (ICD-10) and the current version of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5).
What are the core features of ASD in ICD-11?
According to ICD-11, ASD is characterized by two core features: impairments in social interaction and communication and restricted, repetitive patterns of behavior, interests, or activities. These features must be present in early childhood, cause significant impairment in functioning, and not be better explained by another condition.
However, unlike ICD-10 and DSM-5, ICD-11 does not provide specific examples or subtypes of these features. Instead, it allows for a high variety of symptom combinations and degrees of severity. For instance, ICD-11 does not specify how many social or behavioral symptoms are required for a diagnosis, or how to measure their frequency or intensity. It also does not distinguish between different levels of support needs or intellectual abilities among people with ASD.
Moreover, ICD-11 introduces some new concepts and terms that are not found in ICD-10 or DSM-5. For example, ICD-11 defines social interaction as “the ability to share mental states and affective experiences with others”, and social communication as “the ability to use verbal and non-verbal signals to initiate, maintain, and terminate social interactions”. It also uses the term social-emotional reciprocity to describe “the ability to respond to and initiate social interactions in a manner that is appropriate to the social context and the emotional state of others”.
Another new concept in ICD-11 is restricted and repetitive patterns of behavior, interests, or activities (RRBIA), which replaces the term restricted and repetitive behaviors and interests (RRBI) used in ICD-10 and DSM-5. ICD-11 defines RRBIA as “behaviors that are repeated in a fixed and unvarying way, or that are driven by a preoccupation with a narrow and specific interest or topic”. It also includes sensory abnormalities as a type of RRBIA, which refers to “altered or heightened responses to sensory stimuli, or a strong preference for certain sensory modalities or stimuli”.
What are the advantages and disadvantages of ASD in ICD-11?
One of the main advantages of ASD in ICD-11 is that it acknowledges the diversity and heterogeneity of the ASD population. By allowing for a wide range of symptom expressions and severities, ICD-11 aims to capture the individual differences and developmental trajectories of people with ASD. It also recognizes that ASD can co-occur with other conditions, such as intellectual disability, attention-deficit/hyperactivity disorder, anxiety, depression, or epilepsy.
Another advantage of ASD in ICD-11 is that it emphasizes the subjective and qualitative aspects of ASD, rather than the observable and quantitative ones. By focusing on the inner experiences and mental states of people with ASD, ICD-11 tries to reflect the perspective of the ASD community and the neurodiversity movement, which advocates for the acceptance and inclusion of people with different neurological profiles.
However, there are also some major disadvantages and challenges of ASD in ICD-11. One of them is the lack of clarity and precision in the diagnostic criteria, which may lead to confusion, inconsistency, and variability in the diagnosis and classification of ASD. For example, it is unclear how to operationalize and measure the concepts of social interaction, social communication, social-emotional reciprocity, and RRBIA. It is also unclear how to determine the threshold and cut-off points for the diagnosis of ASD, or how to differentiate ASD from other mental disorders or normal variations in behavior and personality.
Another disadvantage of ASD in ICD-11 is the potential impact on the clinical practice and research of ASD. For instance, the broad and vague definition of ASD may result in an increase in the prevalence and diagnosis of ASD, which may affect the access to and quality of services and interventions for people with ASD. It may also reduce the specificity and validity of the ASD diagnosis, which may hamper the identification of the etiology and biological mechanisms of ASD. Furthermore, it may increase the heterogeneity and complexity of the ASD population, which may limit the generalizability and replicability of research findings and the development of personalized and evidence-based treatments.
What are the implications and recommendations for the future of ASD?
ASD in ICD-11 represents a significant shift in the conceptualization and diagnosis of ASD, which has both positive and negative consequences for the ASD field. While it is important to respect and appreciate the diversity and subjectivity of people with ASD, it is also essential to maintain a rigorous and objective approach to the diagnosis and research of ASD.
Therefore, some suggestions and recommendations for the future of ASD are:
- To develop and validate reliable and valid tools and methods for assessing and measuring the core features of ASD in ICD-11, such as standardized questionnaires, interviews, observations, and biomarkers.
- To establish and apply clear and consistent criteria and guidelines for the diagnosis and classification of ASD in ICD-11, such as specifying the number and severity of symptoms, the level of impairment, the differential diagnosis, and the comorbid conditions.
- To identify and describe the core subtypes and endophenotypes of ASD, based on the combination and interaction of genetic, neurobiological, behavioral, and environmental factors.
- To conduct and replicate longitudinal and cross-cultural studies on the prevalence, course, and outcome of ASD in ICD-11, and compare them with the previous versions of the ICD and the DSM.
- To design and evaluate effective and tailored interventions and supports for people with ASD in ICD-11, based on their individual needs, preferences, strengths, and challenges.
Faq
How does ICD-11 address the gender differences and diversity in ASD?
ICD-11 recognizes that ASD is more prevalent and diagnosed in males than in females, but it also acknowledges that there may be gender differences and diversity in the presentation and expression of ASD. For example, ICD-11 suggests that females with ASD may show less obvious or more subtle symptoms, or may use more compensatory or masking strategies, than males with ASD. ICD-11 also indicates that some people with ASD may have gender dysphoria or incongruence, which refers to a mismatch between their assigned sex at birth and their experienced or expressed gender identity.
How does ICD-11 address the cultural and linguistic diversity in ASD?
ICD-11 acknowledges that ASD can be influenced by cultural and linguistic factors, such as the norms and expectations of social behavior, communication, and interests in different societies and communities. ICD-11 also recognizes that ASD can be expressed and diagnosed differently across different languages and dialects, which may affect the interpretation and translation of the diagnostic criteria and the assessment tools. ICD-11 recommends that the diagnosis and treatment of ASD should be sensitive and respectful to the cultural and linguistic background and identity of the person with ASD and their family.
How does ICD-11 relate to the concept of neurodiversity and the social model of disability?
The concept of neurodiversity and the social model of disability are perspectives that challenge the medical model of disability, which views disability as a problem or defect that needs to be fixed or cured. The concept of neurodiversity and the social model of disability propose that disability is a natural and valuable variation of human diversity, and that the barriers and challenges faced by people with disabilities are mainly caused by the social and environmental factors that exclude or discriminate them. ICD-11 tries to incorporate some aspects of these perspectives, such as the recognition and appreciation of the diversity and subjectivity of people with ASD, and the emphasis on the environmental factors that may facilitate or hinder their functioning and participation. However, ICD-11 still maintains a medical model of disability, as it defines ASD as a disorder that causes impairment and requires intervention.
How does ICD-11 incorporate the perspective and voice of people with ASD and their families?
ICD-11 claims that it is based on the best available scientific evidence and clinical expertise, as well as on the input and feedback from various stakeholders, including people with ASD and their families. ICD-11 also states that it aims to respect and appreciate the diversity and subjectivity of people with ASD, and to reflect their perspective and voice in the diagnosis and treatment of ASD. For instance, ICD-11 emphasizes the importance of involving people with ASD and their families in the diagnostic process and the decision-making about the interventions and supports that best suit their needs and preferences.
How does ICD-11 affect the education and training of professionals who work with people with ASD?
ICD-11 may require some changes and adaptations in the education and training of professionals who work with people with ASD, such as psychologists, psychiatrists, pediatricians, speech and language therapists, occupational therapists, teachers, and social workers. For example, the professionals may need to learn and apply the new concepts and terms used in ICD-11, such as social interaction, social communication, social-emotional reciprocity, and RRBIA. They may also need to update and revise their assessment and intervention methods and tools, to align them with the ICD-11 criteria and guidelines. They may also need to enhance their clinical judgment and expertise, to deal with the ambiguity and variability of the ICD-11 diagnosis and classification. They may also need to improve their communication and collaboration skills, to involve people with ASD and their families in the diagnostic process and the decision-making about the interventions and supports.
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