Research

More research is needed in areas such as communication, service delivery, education, and community supports that will have practical applications for improving the quality of life of Autistic people and our families. Autism research grants in recent years have gone mainly toward genetic and other causation-oriented studies with potential eugenic consequences, while studies focusing on educational practices, assistive technology, and effective supports for community inclusion have received far less funding. These skewed priorities are unacceptable to the Autistic community and cannot be allowed to continue. It is a grave human rights concern that many Autistic individuals experience significant barriers to communication and to full participation in society because of inadequate funding of research on assistive communication technology and educational methods.

ASAN supports a Community Based Participatory Research (CBPR) or Participatory Action Research (PAR) approach to research, in which members of the community are full participants at every stage of the research process. Academics, service professionals, and the Autistic community work together to conduct research that improves the lives of people on the spectrum. ASAN is currently serving as a Community Based Organization for two CBPR projects. The Academic Autistic Spectrum Partnership in Research and Education (AASPIRE, http://aaspire.org) is committed to the values of inclusion, respect, community relevance, and accessibility, and conducts ongoing studies on topics such as healthcare and well-being. The AUCD Partnering Project (http://www.aucd.org/template/page.cfm?id=426) seeks to better understand the relationship between interpersonal violence, health, and disability for individuals with developmental disabilities.

Data collection for research purposes needs to be conducted with the rights of the individual as the foremost priority. Researchers should take care to ensure informed consent and protection of privacy when conducting studies that involve personal information. Although the autism registries that have been created in some states can help to improve the planning and delivery of services, they also raise obvious concerns about potential misuse of information and perpetuating stigma. Strong privacy protections are necessary, and offensive language that characterizes Autistics as defective or burdensome must be avoided.