The Politics of Autism discusses health care, and explains that autism services can be complicated, creating difficulties for autistic people and their families.
Shaun Heasley reports at Disability Scoop:
Researchers are warning that more attention needs to be paid to the overall health of adults with autism, with a new study finding them at greater risk for a host of maladies.
Adults on the spectrum have higher rates of health conditions ranging from seizure disorders and depression to hypertension, high cholesterol, allergies and anxiety, according to findings published recently in the Journal of General Internal Medicine.
“Although it has been extensively studied in children, little is known about health conditions in adults with autism,” said Robert Fortuna, an assistant professor of medicine and pediatrics in primary care at the University of Rochester Medical Center, who led the study. “Greater awareness is needed to ensure that adults with autism are treated for conditions that are more prevalent with autism as well as conditions that are commonly encountered with advancing age.”Also at Journal of General Internal Medicine., Clarissa Kripke offers a capsule commentary:
State and federal policy prioritizes serving people with disabilities in the community as opposed to in institutions. But there has been little investment in developing the health services and trained workforce to deliver effective medical care in this setting. Many studies have shown that overall, community-based services and small, fully-integrated housing is superior to institutions in a variety of domains, including community participation, contact with family and community, and quality of life. However, the research is more mixed in the areas of medication, health, risks, and mortality. Social determinants of health and problems with access to medical, dental and behavioral health care contribute to health disparities.1 Fortuna and colleagues’ study expands our understanding of the health care and support needs of adults on the autism spectrum as they and their parents age. Autistic adults have higher rates of chronic medical conditions that require ongoing, medical attention, as well as significant, support needs for activities of daily living.2 Furthermore, most autistic adults live on their own or with family rather than in supervised residential settings. Due to advancements in federal Medicaid policy, the trend towards people with complex disabilities living in fully integrated homes will likely accelerate. The new Home and Community Based Settings regulation requires states to provide recipients of Medicaid-funded, long-term care with community options. Options must include the ability to choose service providers, housing, roommates and other relationships, supported employment in regular workplaces, and the ability to direct their own lives.3
Effective health care services and professional training requires the collaboration and leadership of autistic adults. To assist health care providers to serve the population, tools developed in collaboration with autistic adults have been developed by the Office of Developmental Primary Care (http://odpc.ucsf.edu) and the Academic-Autistic Spectrum Partnership in Research and Education (http://www.autismandhealth.org/). Also, review articles on primary care of transition age youth and adults are available to help clinicians and health systems provide culturally competent services to reduce health disparities and improve access to care.4,5
1.Mansell J, Beadle-Brown J, Special Interest Research Group. Deinstitutionalization and community living: position statement of the comparative policy and practice special interest research group of the international association for the scientific study of intellectual disabilities. J Intel Dis Res. 2010;54(2):104–12.CrossRef2.Fortuna RJ, Robinson L, Smith TH, Meccarello J, Bullen B, et al. Health conditions and functional status in adults with autism: a cross sectional evaluation. J Gen Intern Med. 2015. doi:10.1007/s11606-015-3509-x.
3.Autistic Self-Advocacy Network. ASAN Toolkit on Improving Home and Community-Based Services (HCBS). Available at: http://autisticadvocacy.org/policy-advocacy/policy-advocacy-toolkits/hcbs/. Accessed 8/26/15.
4.Nicolaidis C, Kripke C, Raymaker D. Primary care for adults on the autism spectrum. Med Clin North Am. 2014;98(5):1169–91.CrossRefPubMed5.Kripke CC. Primary care for adolescents with developmental disabilities. Prim Care. 2014;41(3):507–18.CrossRefPubMed