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3 April, 2019 10:41:11 AM


Observing World Autism Awareness Day

All members of society including autistic people have the same human rights – they include civil, cultural, economic, political and social rights
Mohammed Abul Kalam, PhD
Observing World Autism Awareness Day

"On World Autism Awareness Day, let us reaffirm our commitment to promote the full participation of all people with autism, and ensure they have the necessary support to be able to exercise their rights and fundamental freedoms." Secretary-General António Guterres.
Autism awareness has grown worldwide in recent years. For the United Nations, the rights of persons with disabilities, including persons with autism, as enshrined in the Convention of the Rights of Persons with Disabilities (CRPD), are an integral part of its mandate.
The Convention on the Rights of Persons with Disabilities and its Optional Protocol (A/RES/61/106) was adopted on 13 December 2006 at the United Nations Headquarters in New York, and was opened for signature on 30 March 2007.

There were 82 signatories to the Convention, 44 signatories to the Optional Protocol, and a ratification of the Convention. This is the highest number of signatories in history to a UN Convention on its opening day. It is the first comprehensive human rights treaty of the 21st century and is the first human rights convention to be open for signature by regional integration organisations. The Convention entered into force on 3 May 2008. The Convention follows decades of work by the United Nations to change attitudes and approaches to persons with disabilities. It takes to a new height the movement from viewing persons with disabilities as “objects”  of charity, medical treatment and social protection towards viewing persons with disabilities as “subjects” with rights, who are capable of claiming those rights and making decisions for their lives based on their free and informed consent as well as being active members of society.

The Convention is intended as a human rights instrument with an explicit, social development dimension. It adopts a broad categorization of persons with disabilities and reaffirms that all persons with all types of disabilities must enjoy all human rights and fundamental freedoms. It clarifies and qualifies how all categories of rights apply to persons with disabilities and identifies areas where adaptations have to be made for persons with disabilities to effectively exercise their rights and areas where their rights have been violated, and where protection of rights must be reinforced.

The Convention was negotiated during eight sessions of an ad hoc committee of the General Assembly from 2002 to 2006, making it the fastest negotiated human rights treaty. Human rights of persons with disabilities: All members of society have the same human rights – they include civil, cultural, economic, political and social rights.  Examples of these rights include the following:• equality before the law without discrimination• right to life, liberty and security of the person• equal recognition before the law and legal capacity• freedom from torture• freedom from exploitation, violence and abuse• right to respect physical and mental integrity• freedom of movement and nationality• right to live in the community• freedom of expression and opinion• respect for privacy• respect for home and the family• right to education• right to health• right to work• right to an adequate standard of living• right to participate in political and public life• right to participate in cultural life.

All persons with disabilities have the right to be free from discrimination in the enjoyment of their rights.  This includes the right to be free from discrimination on the basis of disability, but also on any other basis such as race, colour, sex, language, religion, political or other opinion, national or social origin, property, birth or other status.

Convention on the Rights of Persons with Disabilities: The Convention on the Rights of Persons with Disabilities is an international treaty that identifies the rights of persons with disabilities as well as the obligations on States parties to the Convention to promote, protect and ensure those rights.  The Convention also establishes two implementation mechanisms: the Committee on the Rights of Persons with Disabilities, established to monitor implementation, and the Conference of States parties, established to consider matters regarding implementation.

States negotiated the Convention with the participation of civil society organizations, national human rights institutions and inter-governmental organizations.  The United Nations General Assembly adopted the Convention on 13 December 2006 and it was opened for signature on 30 March 2007.  States that ratify the Convention are legally bound to respect the standards in the Convention.  For other states, the Convention represents an international standard that they should endeavour to respect.

Why is the Convention unique? The Convention is the first human rights convention of the 21st century and the first legally binding instrument with comprehensive protection of the rights of persons with disabilities.  While the Convention does not establish new human rights, it does set out with much greater clarity the obligations on states to promote, protect and ensure the rights of persons with disabilities.   Thus, the Convention not only clarifies that states should not discriminate against persons with disabilities, it also sets out the many steps that states must take to create an enabling environment so that persons with disabilities can enjoy real equality in society.  For example, the Convention requires states to take measures to ensure accessibility of the physical environment and information and communications technology.  Similarly, states have obligations in relation to raising awareness, promoting access to justice, ensuring personal mobility, and collecting disaggregated data relevant to the Convention.  In this way, the Convention goes into much greater depth than other human rights treaties in setting out the steps that states should take to prohibit discrimination and achieve equality for all.

The Convention incorporates a social development perspective.  The Convention recognizes the importance of international cooperation and its promotion to support national implementation efforts.  An innovation in this regard concerns specific references to actions the international community could take to promote international cooperation such as:• ensuring that international development programmes are inclusive of and accessible to persons with disabilities;• facilitating and supporting capacity-building;• facilitating cooperation in research and access to scientific and technical knowledge;• providing technical and economic assistance as appropriate.

When world leaders adopted the 2030 Agenda for Sustainable Development in 2015, the international community reaffirmed its strong commitment to inclusive, accessible and sustainable development, and pledged that no one would be left behind. In this context, the participation of persons with autism as both agents and beneficiaries is essential for the realization of the Sustainable Development Goals (SDGs). For many people on the autism spectrum, access to affordable assistive technologies is a prerequisite to being able to exercise their basic human rights and participate fully in the life of their communities, and thereby contribute to the realization of the SDGs. Assistive technology can reduce or eliminate the barriers to their participation on an equal basis with others.

The Convention on the Rights of Persons with Disabilities acknowledges the instrumental role of assistive technologies in enabling persons with disabilities to exercise their rights and freedoms. It obliges states that are party to the Convention to promote availability and use of such technologies at an affordable cost, to facilitate access to them, and to undertake or promote research and development into new such technologies.  While technological advances are continuous, there are still major barriers to the use of assistive technologies, including high costs, lack of availability, lack of awareness of their potential, and a lack of training in their use. Available data indicates that, in several developing countries, more than 50 per cent of the persons with disabilities who need assistive devices are not able to receive them.

WHO has been advocating for political commitment to the needs and services for ASD, scaling-up resources and raising public awareness to facilitate early detection, community-based intervention and multisectoral approach to reduce the impact of ASD. Among the region's 11 countries, Bangladesh has made focused interventions for autism and much of the pioneering work has been initiated by Saima Wazed.

Onset of ASD symptoms typically occurs by age 3, although symptoms may not fully manifest until school age or later, and some research suggests symptoms can emerge between 6 and 18 months of age. More severely affected children are more likely to be identified and reliably diagnosed at younger ages than milder cases. The hallmark of ASD is impaired social interaction and communication ability, coupled with restricted and repetitive patterns of behaviours or interests. Approximately four males are affected with ASD for every female, though the sex ratio appears to decrease with increasing severity. Although this pronounced sex disparity is found in all populations studied and has been historically consistent, differences in symptom presentation in females and potential attendant diagnostic biases, even though unlikely to fully explain observed differences, are worthy of additional investigation.

Epigenetics is a term used to describe a wide range of molecular information that sits on top of the DNA sequence and regulates a diverse set of cellular processes, including imprinting, gene expression, and organismal development. In recent years, there has been increasing interest in examining epigenetic marks in ASD due to their potential mechanistic involvement in etiology, particularly to explain the effects of environmental exposure or G×E associations with ASD or to serve as biomarkers of previous exposure or disease. Studies have shown that DNA methylation (DNAm), a type of epigenetic change, can be controlled by genetic variation and can change with exposure to environmental factors. Interestingly, Rett syndrome, fragile X syndrome and Angelman syndrome are all caused by epigenetic dysregulation, and each shares phenotypic overlap with ASD. Epigenetic changes have been found in the brains of individuals with ASD, including hypo- and hyper methylation and spreading of histone 3 lysine 4 trimethylation marks, as well as in DNA derived from a range of more accessible tissues. These findings highlight the future potential for epigenetics to serve as a biomarker of disease. Interestingly, rare genetic variants for ASD implicate chromatin remodeling, another aspect of epigenetic regulation. Chromatin structure has not been extensively examined in ASD, given the need for immediate processing of large amounts of biospecimen tissue.

In addition to focused follow-up on modifiable risk factors, and continued efforts to identify new risk factors, the innovation around biomarkers of exposure and exposure response prompted by increased interest in the field of exposomics might also catalyze further advances in the coming decade. The development or synthesis of large epidemiologic cohorts of children containing informative outcome data, relevant biosamples for exposomics, and available genomic data is now being put into practice; however, the extent to which ASD-related outcomes are incorporated into such cohorts and the utility of exposomics technology, including its ability to reach back into the critical windows for ASD etiology, remain to be seen. Equally important will be determining whether and how real-world mixtures of exposures may compound risk as well as identifying individual bad actors or groups of exposures that may be targets for intervention for widespread public health impact.

The writer is former Head, Department of Medical Sociology,

Institute of Epidemiology, Disease Control & Research (IEDCR)




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Editor : M. Shamsur Rahman
Published by the Editor on behalf of Independent Publications Limited at Media Printers, 446/H, Tejgaon I/A, Dhaka-1215.
Editorial, News & Commercial Offices : Beximco Media Complex, 149-150 Tejgaon I/A, Dhaka-1208, Bangladesh. GPO Box No. 934, Dhaka-1000.

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