There has been a considerable amount of attention garnered lately that focuses on people with autism. We have heard about the broad spectrum of talents and abilities within the autism community as inclusion efforts are on the rise. Much of the attention has centered around children activities during the formative years such as behavioral therapy, educational reform, and socialization trends. Early intervention in identifying and treating autism related disorders is always a wise investment in the lives of children, and I personally support such initiatives. However, as the autistic population moves towards adulthood, we must shift our attention to the needs of caring for them long term. Within that framework, there is another layer of care that is seldom talked about – caring for adult men and women with chronic autism in a long term care environment.
Experts tell us there will be approximately 50,000 autistic teens transitioning to adulthood during the next decade. That number will only increase as some young adults will be diagnosed for the first time as a result of pre-employment screenings or comprehensive testing for military service. From the ranks of more than half a million autistic adults, a fair percentage will not be capable of taking care of themselves in adulthood. Currently, the role of caregiver falls primarily with parents within the family home. In some cases siblings and other family members have assumed the role in the parents’ absence, but these types of cases are not the norm. To be clear, this group of individuals has severe limitations and requires assistance with the most basic areas of care. Parents are accustomed to helping with feeding, bathing, toileting, dressing, and grooming activities. Some of the adults at the lower end of the spectrum have self stimulation issues, such as head banging, which may be hurtful – or even fatal. Caring for these special adults can be physically demanding, but the rewards are extremely gratifying for those who love and care for them.
The parents and caregivers are to be commended for their tireless sacrifice in taking care of autistic adults with serious limitations on a day to day basis. However, there is a major problem brewing as parents and caregivers are getting older, thus making it more difficult to serve as primary caretakers. There is a huge opportunity looming for the building industry, specifically contractors specializing in long term care facilities. The senior population has been the focal point for decades for long term care builders, but the market will expand to include adults with autism over the course of the next two decades. As baby boomer parents with special needs adult children approach retirement, there are valid concerns regarding future care options for their children. Now is the time for leaders representing the long term care industry to start a dialogue that provides some degree of assurance that this issue is under consideration. The young men and women on the spectrum deserve our very best in creating residential units designed with their sensory issues in mind. They deserve a legacy worthy of respect and dignity that allows them to live in a supportive and loving environment.