Working Group on Autism Spectrum Disorder
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Background and Mission
In 2024 Autism Spectrum Disorder (ASD) is believed to affect one out of every 90 individuals on the planet, across ethnicities and socioeconomic categories. However, due to the scarcity of data from low- and middle-income nations, these figures are likely to be substantially higher. Approximately 2.8% of children in the United States have a diagnosis of autism, a rate that has almost 250% increase in comparison to the beginning of the new century.
ASD is associated with a broad vulnerability to concomitant health issues, especially psychiatric disorders, with a prevalence five or more times higher than in the general population. The identification of concomitant psychiatric disorders in persons with ASD requires a specific knowledge and expertise, since the symptomatology is substantially different from that shown by the general population, especially in persons with low or absent verbal communication skills and illness insight, who express their suffering through changes in behaviour.
Around one half of the persons with low-functioning ASD receive psychotropic medication, and in one-third of cases drugs are prescribed to manage problem behaviours such as aggression or self-injury, in the absence of a diagnosed psychiatric disorder.
Despite the evidence on an enormous burden on families and caregivers, the high need of service provision, and the high health and societal costs, ASD is still overlooked as mental health issues by many national and international organizations worldwide, especially in case of substantial and very substantial support need (level 2 and 3), minimal verbal ability and co-occurrence of intellectual disability (including borderline intellectual functioning). Even in those countries where specific care programs are available, significant gaps are usually reported between awareness, planning and delivery of services. Specific training for psychiatrists and other mental health professionals is also often lacking, at every level within the clinical education system, including undergraduate, graduate and postgraduate training as well as professional continuing education. In the academic context of many countries, ASD is still not regarded as an integral part of the mainstream of adult psychiatry.
To address these issues, the WPA has constituted a working group including experts with long-standing contributions to WPA activities in the field.
Aims and actions for the triennium 2024-2026
The WPA Working Group (WG) on Intellectual Disability (ID) has been tasked with the following:
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Training materials for the WPA Educational Portal (and or WPA Specialist Corner) on epidemiology, phenomenology, and assessment of psychiatric disorders in persons with ASD, including level 2 and 3 ASD.
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Implementation of evidence-based diagnosis and therapies through the WPA Specialist Corner.
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Position statement on outcome measures, quality of life, prevention, and preservation of mental health in persons with ASD.
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Position statement on the rights to mental health care of persons with ASD (including level 2 and level 3 ASD) and/or other neurodevelopmental disorders, in collaboration with the WPA sections on ‘Stigma and Mental Illness’, ‘Psychiatry of Intellectual and Developmental Disability’, and all the other WPA entities that might be interested in this endeavour.
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Survey on the consideration of ASD within adult psychiatry in a sample of countries across the main five continents of the world.
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Publications on WPA web and journal of the above-mentioned position statements and survey results.
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Participation to the International Working Group of the International Prader-Willi Syndrome Organisation (IPWSO), including the ECHO (Mental Health Extension of Community Healthcare Outcomes) programme.
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Participation to the WPA world congresses.
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Collaboration with the WPA sections and other WPA entities, especially with the sections on ‘Psychiatry of Intellectual and Developmental Disability’ and on ‘Stigma and Mental Illness, to activities and publications aimed at enhancing policy and practice for neurodevelopmental disorders in psychiatry, along with promoting education and training.
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All aims will be pursued in alignment with the WPA EDIT principles.
Members
Working Group Members
Marco O. Bertelli (chair), psychiatrist, Italy
Luis Salvador-Carulla (co-chair), psychiatrist, Australia
Muhammad Waqar Azeem, child psychiatrist, Qatar
Bill Sullivan, family physician and bio-ethicist, Canada
Ashok Roy, psychiatrist, United Kingdom
Kerim Munir, psychiatrist and child-adolescent psychiatrist, United States
Mashudat Bello-Mojeed, child adolescent psychiatrist, Nigeria
Dr. Henry Kwok, psychiatrist with special interests in autism and intellectual disabilities, Hong Kong
Deliverables
Within the WPA 2021-2023 Action Plan this group has produced a set of collaborative documents on policies, services, education, and training, in which the issues related to diagnosis, treatment and outcome measures of concomitant psychiatric disorders has occupied a central place. The provision of strategies for interdisciplinary approaches and the promotion of partnerships for joint collaborative work in capacity building among medical students, young psychiatrists and allied professionals have represented other main focuses.
A description of the main activities is provided below:
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Production of the document “Advices for managing the COVID-19 outbreak and the associated factors of mental distress for people with intellectual disability and autism spectrum disorder with high and very high support needs”. The document, which has been translated into 15 languages and published on the website of the World Psychiatry Association, was aimed at offering people with low-functioning autism spectrum disorder, intellectual disabilities, and their families a series of practical advice for dealing with distress factors related to the COVID-19 epidemic and the hygiene regulations and government provisions to contain it.
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Production of documents for the WPA website and assistance to the WPA President in educating all WPA member societies about the importance of prioritizing COVID-19 vaccination for people with intellectual disabilities and/or low-functioning ASD, as well as their primary caregivers.
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Panel discussion at the Bangkok WPA (virtual) world congresses on ‘Autism Clinical and Public Health’ (12/3/2021), with a main focus on consideration of mental health needs of persons with ASD within psychiatric training and mental health services in different countries and socio-cultural contexts.
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Organisation of the Presidential symposium on learning disability and ASD at the 21st WPA (virtual) world congress (Cartagena) (19/10/2021), with a focus on psychiatric training and mental health services for people with intellectual disabilities and ASD in various countries and socio-cultural contexts.
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Organisation of an action plan symposium at the XXII WPA World Congress of Psychiatry, with a focus on prevalence and presentation of psychopathological issues in persons with ASD and cognitive/communication difficulties (Bangkok, 2-3/8/2022).
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Participation to the action plan session ‘autism & learning disability’ at the XXIII WPA World Congress (Vienna, 29/9/2023).
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Participation to the XIV World Congress of World Association for Psychosocial Rehabilitation (WAPR), Abu Dhabi (9/12/2021).
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Participation to the webinar of the Section of Mental Health in Intellectual Disabilities (MHID) of the European Psychiatric Association (EPA), “Diagnostic and therapeutic problems in patients with intellectual disability and mental health problems” (14/12/2022).
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Participation to the International Working Group of the International Prader-Willi Syndrome Organisation (IPWSO), including the ECHO (Mental Health Extension of Community Healthcare Outcomes) programme.
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Publication (May 2022) of a comprehensive textbook on psychiatric disorders in people with low-functioning ASD and/or intellectual disability represents the main achievement of the WG. It includes the most recent research knowledge on the prevalence, risk and etiological factors, clinical features, assessment procedures and tools, diagnostic criteria, treatment, and prognosis. This volume, titled “Textbook of Psychiatry for Intellectual Disability and Autism Spectrum Disorder”, has been coordinated by Dr. Marco O. Bertelli, Scientific Director of CREA (Research and Clinical Centre) of Fondazione San Sebastiano of Misericordia di Firenze, and current chair of the WG-ASD. The textbook has been realised under the aegis of the WPA with a production time span of about 6 and a half years. It includes 43 chapters written by 116 of the most authoritative experts in the sector in all countries of the world. Beside Dr. Bertelli (leading editor), the textbook has been edited by Prof. Shoumitro (Shoumi) Deb, Prof. Kerim Munir (Chair, Section of Psychiatry of Intellectual and Developmental Disorders, WPA), Prof. Angela Hassiotis and Prof. Luis Salvador-Carulla, who are all outstanding contributors to the WPA activities related to ASD and intellectual disability. This book was inspired by the will of sharing knowledge and transmitting passion to colleagues, especially young and future colleagues. In fact, it is intended for use by graduate students and trainees of university faculty, practitioners in clinical disciplines or management roles in developmental disabilities services and education, and to a lesser degree, undergraduate students, parents, attorneys and advocacy groups. This textbook allows clinicians to overcome diagnostic challenges and provide more effective care that is tailored to the specific needs of individuals with ASD and/or ID. Researchers will find the coverage contained herein useful for a summary of current knowledge about a subarea of psychiatry that is new to them or that intersects their own specialty in the wider field of neurodevelopmental disorders.
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Publication of two news on the WPA official journal ‘World Psychiatry’: 1) Bertelli MO, Salvador-Carulla L, Munir KM, Scattoni ML, Azeem MW, Javed A. Intellectual developmental disorder and autism spectrum disorder in the WPA next triennium mainstream. World Psychiatry. 2020 Jun;19(2):260; 2) Bertelli M.O., Bianco A., Salvador-Carulla L. and Javed A. (2023). WPA Working Group on Defining and Managing Autism Spectrum Disorder: spreading knowledge for the next generations of psychiatrists. World Psychiatry, 22: 168-169.
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Promotion campaign of the WPA Springer Textbook titled ‘Psychiatry of Intellectual Disability and Autism Spectrum Disorder’, including presentations or special events at 1) XI Italian congress on Quality of Life for Persons with Neurodevelopmental Disorders (Milan, 2021); 2) XIII International Congress of the European Association for Mental Health in Intellectual Disability (Berlin, 2021); 3) XXIII WPA World Congress, Vienna 2023.
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Publication of eNews on the WPA eNewsletter, including those on the issues Q2-2021 and Q2-2022.
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Participation to the World Health Organisation Working Group for the Development of the Package of Rehabilitation Interventions for persons with ASD.
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Collaboration with the WPA Working Group on Intellectual Disability and the WPA section ‘Psychiatry of Intellectual Disability’ to several activities and publications.