Respite care for autism allows caregivers to step away from their duties for an hour, a day, or even a weekend. That breather could help you rest, relax, and recharge.
When you return to your caregiving work, you could have an open mind, an open heart, and newfound energy you can share with the person you love.
What Is Respite Care for Autism?
The National Institute on Aging defines respite care as a form of short-term relief for primary caregivers. Just as every family is different, so are the arrangements those families need to feel safe and comfortable.
Experts say there are multiple respite care formats, such as:
- In-home care. Someone stays with the person with autism in your home while you care for yourself in another room or in another place entirely.
- Structured care programs. A faith-based agency, health care facility, or state organization schedules respite care slots. Families sign up when the person they love needs assistance.
- Camp programs. The person leaves the home for outdoor, supervised, recreational adventures.
- Informal arrangements. Families create workshare programs, and they take turns relieving the primary caregiver from duty.
- Care cooperatives. Families band together and trade respite opportunities. You might care for an additional child one day, and the next day, your child is watched in return.
With this kind of variability, there is a wide range in costs. Some programs are free, others come on a sliding payment scale, and others are very expensive. Before you enroll your child in any program, you'll need to determine whether it fits into the family budget.
Potential Respite Care Partners
Researchers say respite care is one of the services families have questions about. They don't know where to start a search, and they're not sure how to pick a program that's right for them.
Start your search with a conversation. Talk with your child's treatment team, including:
- Social workers
These professionals understand what your child needs right now, and since they work in the health care community, they may know about local programs that are right for your family. They may also help you process paperwork to get your child enrolled in these programs as quickly as possible.
If your child's network has no good suggestions or you'd like to broaden your research, you have plenty of options, including:
- Easterseals. This nationwide organization offers respite care services, including sleepaway camps and overnight stays. Some states have only one Easterseals center, so this may not be an option for all families. But if you live near a facility, it could be just right for yours.
- ARCH. Use ARCH to search for respite providers and programs within your state. Dig even deeper, and connect with state respite registries and coalitions. Compiling resources is a key part of what ARCH does, and the organization's website is both powerful and in-depth.
- Autism Speaks. More than 100 respite care programs appear on the Autism Speaks website. Click links to find out more about each option, or use included phone numbers to call and schedule an interview.
This list of resources helps you start your search. When you've done your work, you should have several organizations ready and willing to help your family.
What to Look for in a Respite Care Partner
Cost often plays a role when families narrow down their autism respite program options. But you'll need to dig a little deeper to ensure that you've made the right choice.
Nemours recommends holding a screening interview. Ask about:
- Plans. What does the person propose to do to fill time during the respite shift? Are there structured activities available, or will the person go along with your child's needs?
- Background. If you're working with an individual, what sort of education has that person been through? Can the person provide references? If you're working with an organization, ask about their staff.
- Skills. Make a list of all the things your child needs help to complete. Will this program meet your child's demands?
Autism Speaks recommends asking potential caregivers detailed questions pertaining to autism and care. Ask about:
- Autism knowledge. How much does the person know about what autism is and how it works? If the person seems to know very little, is there a willingness to enroll in a training course?
- Autism experience. Individuals may have little to no experience in helping someone with autism. Their inexperience gives you an opportunity for custom training. But ensure the person understands reactions, needs, and techniques. Organizations should know about autism, and staff should prove that they've worked with this community before.
- Concerns. Outbursts, wandering, and physical aggression can be off-putting to anyone. Describe what happens at home, and ask if the person feels comfortable handling those issues.
- Availability. When will the first respite session happen? How often can you repeat it?
If your phone interviews went well, schedule an in-person talk. See how the potential caregiver interacts with the person you love. Or see how the person you love reacts to a quick visit to the facility you're contemplating. If you don't find a good fit, keep searching.
Prepare Your Family for Respite Care
Communication is a critical part of a healthy family. Before you alter routines by engaging a respite care worker, ensure that everyone knows what's happening and why.
- Explaining the plan. Outline why you're investing in respite.
- Adding appointments to schedules. Write down respite opportunities on your family's calendar, and add them to the person's daily reminder calendar. Don't spring this event on the person.
- Introducing the respite worker. Ensure that the person knows who is in charge, and allow for a smooth handoff between the family and the respite program.
For some families, the hardest part of using an autism respite program is letting go of core responsibilities. It's very difficult to hand off someone you love to a new person and walk away to enjoy yourself.
Prepare yourself for respite by:
- Treating it like an appointment. Write applicable dates in your calendar, and make a commitment to keep them.
- Reminding yourself of its importance. Respite can make you a better caregiver. You might also improve your relationships. For example, researchers say autism respite care leads to happier marriages. You're not being selfish. You're taking care of the people you love.
- Writing everything down. If you're concerned about missed opportunities or critical mistakes, leave clear instructions. Explain everything down to the last detail, so you won't be worried that you left anything to chance.
- Easing into respite. Keep your first breaks short. When you return and see that everything went well, you'll feel ready to elongate those opportunities.
Respite care is a wonderful way for families to stay connected, healthy, and calm. Find a program that works, and you'll wonder how you ever lived without it.
- What Is Respite Care? (May 2017). National Institutes of Health.
- Profile and Predictors of Service Needs for Families of Children With Autism Spectrum Disorders. (August 2015). Autism.
- National Respite Locator. ARCH
- Respite Care. Autism Speaks.
- Finding Respite Care for Your Child With Special Needs. (June 2015). Nemours.
- Respite Care. Autism Speaks.
- Desperately Needed: Respite. (February 2019). Autism Awareness Centre.
- Respite Care, Marital Quality, and Stress in Parents of Children With Autism Spectrum Disorders. (November 2013). Journal of Autism and Developmental Disorders.