Throughout my career, I have heard many times that people with Autism require structure and routine. I have had countless conversations about caring or providing services for people with Autism. What happens when life takes unexpected turns? What happens when someone becomes dependent on them? How do we equip people for that? In December, I quickly and suddenly found myself in the middle of a crisis caring for a loved one who underwent emergency surgery. I had to completely uproot my life for almost two months. As someone with a learning disability that is similar to Autism, I have always heard discussions about how others must support neurodivergent or disabled people in crises. I have seldom, if at all, heard dialog about what can equip Autistic people to handle crises or caregiving. I came across many studies about caregivers of Autistic people. I have yet to see empirical research and evidence about Autistic people as caregivers for others. This is an important area of research for the future. It got me thinking about what people with Autism should know in order to make caregiving easier.
- Take it one moment at a time and stay in the present – Crisis situations can have us overwhelmed with every responsibility that we have to quickly handle. Consider the things that are of the highest priority to you. For instance, the safety and health of my loved one was the highest priority to me at the time. I decided to put many other areas of my life on hold to focus on this. This is okay.
- Practicing switching up your routine occasionally before a crisis comes – Structure and routine are very beneficial. However, changing up your routine occasionally is a great way to prepare for the unexpected things life can throw at you.
- Adjust your environment to the best of your control and ability – When life is out of your control, it can help to adjust when it is in your control. Are there things you can adjust about the appearance of your home, vehicle, or work environment that can help decrease sensory stimulation (colors, lights, images, sounds, etc.?) or help you feel calmer? Practices in faith and spirituality can help with dealing with fear, uncertainty, and the things that you cannot control. Create moments to do things that you enjoy.
- Create a help plan – Set aside some time to create a list of tasks that you would appreciate if someone else could complete. This could simply be talking to someone about what you are feeling or experiencing with the change. Write the names of people in your life next to the task that you could ask them to help you complete. It can be overwhelming to think about reaching out to people and asking for help when life changes drastically. Setting aside a moment to make a list with specific tasks can make this easier.
- Remember that taking care of yourself will make you a more effective caregiver for someone else – Do the best you can by getting rest and taking care of your health while you are caring for someone else. Your self-care practices may not look exactly the same as the time before you had to take care of a loved one. Keeping up with them to the best of your ability will help to make the process easier for you.
Caregiving as an Autistic person presents unique challenges, but it also offers opportunities for growth and resilience. By embracing flexibility, preparing for the unexpected, and acknowledging the need for self-care and support, Autistic individuals can navigate caregiving with greater ease and confidence. As more research is conducted on the experiences of Autistic caregivers, we can foster a more inclusive approach to caregiving that recognizes the strengths and needs of neurodivergent individuals.
Priya Winston, PhD, LMSW, is Director of Curriculum and Clinical Supports at Transitions.
