What Happens to People with Severe Autism When Parents Can No Longer Care for Them?
Understanding the trajectory of severe autism, often referred to as Autism Spectrum Disorder (ASD) 3, is vital for both those directly affected and our broader society. As individuals with severe autism grow older, their long-term care becomes a critical concern. Faced with the reality that parents cannot continue to care for their children, many wonder what happens next.
Autism and Autism Spectrum Disorder (ASD) Levels
It is important to clarify the terminology associated with autism. Autism is not categorized as being divided into multiple levels, but rather falls along a spectrum, with severe cases often referred to as ASD3. Individuals at this level of severity typically have significant needs for support, making it challenging for them to engage in daily activities, education, and employment. They require substantial assistance in managing their day-to-day lives.
Transition from Parental Care to Formal Supports
When parents are no longer able to provide care for their children with severe autism, the transition to other forms of support is essential. One common path is for these individuals to be placed under the care of the state, becoming a ward of the state. This process often involves a guardianship order and can lead to living in group homes or other supported living arrangements. In these cases, the state or designated caregivers ensure that the individual receives the necessary support to maintain a quality of life.
Family Dynamics and Care Planning
The future care of individuals with severe autism often hinges on family dynamics and support systems. For example, one of the author's sisters, diagnosed with a mild intellectual disability and ASD2, struggles with self-care. Her parents' ability to care for her has already been tested, and plans are ideally in place for when they cannot anymore. One family member may step in to provide care, or the individual may be placed with a sibling who is more established. Scenarios can vary widely, depending on the specific circumstances and the availability of resources.
Challenges and Uncertainties
Planning for the future is a critical step, but it can also be challenging, especially when dealing with chronic illness or unforeseen circumstances. For instance, the author highlights their own concerns about their mother’s health and her ability to continue caring for her sister. These scenarios emphasize the importance of proactive planning to ensure that affected individuals have a stable and supportive environment as they age.
Community and Social Support Systems
Many societies have formal care systems in place to provide support for individuals with severe autism. These include sheltered accommodation, care homes, or extended family networks. In the absence of such support, the situation can become dire. Communities that fail to support these individuals risk abandonment, which is a significant ethical and societal issue.
Conclusion
The journey of individuals with severe autism often involves navigating complex systems of care and support. While challenges exist, proactive planning and community support can make a significant difference in ensuring that these individuals have the care and resources they need to thrive. It is crucial for families and society to consider these issues to address the needs of those affected by severe autism.