Intellectual developmental disorder and autism spectrum disorder in the WPA next triennium mainstream

Both intellectual developmental disorder (IDD) and autism spectrum disorder (ASD) are included in the section of neurodevelopmental disorders of the ICD-11 and DSM-5. They represent meta-syndrom­ic groups including many different clin­ical conditions characterized by cognitive and relational impairment. The guiding syndromic pattern involves maladaptive cognitive impairment in IDD and severe limitation and restriction of complex interpersonal interactions in ASD1. The two conditions often co-occur, and their differentiation may be difficult, especially in the context of increasing severity of cognitive impairment. About 30-40% of persons with ID have pervasive features of ASD, and about 80% of persons with ASD have lower intellectual functioning compared to the general population2, 3.

Both IDD and ASD are associated with a broad vulnerability to concomitant health issues, especially psychiatric disorders, with a prevalence five or more times high­er than in the general population4. The identification of concomitant psychiatric disorders in persons with IDD and ASD requires a specific knowledge and exper­tise. The symptomatology can in fact be mixed, intermittent, atypical, masked, and range from poorly defined to extremely rigid. Even key elements of some syndromes, such as delusions, hallucinations or suicidal ideation, are often very hard to recognize, especially in persons with low or absent verbal communication skills, who may only be able to express themselves through changes in behaviour5.

IDD and ASD impose an enormous burden on families and caregivers, require high service provision, and have high health and societal costs6.

Despite the above evidence, IDD and ASD have often been overlooked as mental health issues by the majority of national and international organizations worldwide. Even in those countries where specific care programs are available, significant gaps are usually reported between awareness, planning and delivery of services, especially for persons with higher severity of impairment in communication, conceptual and adaptive skills. 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.

Around one half of the persons with ID and 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 disorder7.

These vulnerabilities and shortage of services to address them seem to extend to persons with borderline intellectual functioning (BIF), who present an IQ below the average (between one and two standard deviations), but not enough to be comprised within the upper limit of IDD. According to research findings, at least one-eighth of the world population has BIF and shows, compared to people with higher IQ, greater social disadvantage, higher rates of psychiatric disorders and substance use, and more frequent use of psychopharmacological therapies and health services, including emergency ones8, 9.

To address the above-mentioned issues, to raise awareness, and to provide some initial solutions, the WPA has just launched a specific program within its proposed Action Plan 2021-2024. During the 19th World Congress of Psychiatry, held in Lisbon in August 2019, two interrelated working groups on IDD and ASD have been established, comprising experts with long-standing contributions to WPA activities in the field.

In the next triennium, these groups will produce a set of collaborative documents on policies, services, as well as education and training. Within these documents, the diagnosis of concomitant psychiatric dis­orders, and the relevant treatment and ­out­come measures, will occupy a central place.

The WPA Action Plan 2021-2024 aims to address the mental health needs of per­sons with IDD and ASD, develop strategies for the collaboration of psychiatrists with other health professionals, and promote partnerships for joint collaborative work in capacity building among medical students, young psychiatrists and allied professionals.

The overarching objective is to strength­en the care of persons with IDD and ASD worldwide and to fulfil their right to mental health care, in accordance to the United Nations Convention on the Rights of Persons with Disabilities.