Pivoting: Balancing Self-Care While Caring for Your Autistic Child

Have you ever been on a plane, watching the flight attendants perform their safety protocol demonstration? They always remind passengers to secure their own oxygen mask first if a cabin depressurizes before assisting others. Easier said than done, right?

Before I had a child, self-care was easy for me to accomplish. After having an autistic child, self-care became more of a luxury than a simple task. As the oxygen mask analogy reminds us, prioritizing self-care enables us to do our best as parents and caregivers. Unfortunately, at times, our child may need us at that moment, making self-care impossible.

Caring for another person requires the emotional, mental, and physical energy of the caregiver. In order to have the energy and resilience to continue meeting challenges head-on, self-care must become a priority.

What is self-care?

According to Barbara Riegel, Tiny Jaarsma, and Anna Stomberg, self-care includes maintaining health and managing symptoms as they arise. Self-care has three dimensions: self-care maintenance, self-care monitoring, and self-care management. There are different ways to perform self-care, including responsible, independent, formally guided, and abandoned self-care.

These distinctions of performance show how an individual performs an act of self-care. An individual can be responsible for their entire self-care practices or they can be independent in performing the act, yet need guidance on when to do so. Formal self-care is monitored self-care and assisted by someone else. Abandoned activities no longer serve the individual or self-care process.

Caregivers of autistic children or other complex needs children need to care for themselves as they care for the needs of their child. Caregivers continuously check their child’s symptoms and follow treatment routines. When new or concerning symptoms or behaviors arise, caregivers spring into action to ease or manage them. Caregivers need to be aware of taking care of themselves in the same manner.

Self-care can be personalized to fit one’s preferences. It is a holistic process encompassing various activities, behaviors, and decisions aimed at maintaining and improving overall health and wellness.

What does research say?

sports as self care

Self-care is crucial to the well-being of both healthy and ill individuals, promoting, preventing, or delaying disease. Practicing self-care can lead to better health outcomes and save money on healthcare. It’s crucial to find coping mechanisms for unchangeable life situations. Self-care also reduces burnout and creates support. Self-care can also increase resilience, which is necessary to recover from challenges and stresses faced.

Maslow’s hierarchy of needs

Abraham Maslow created the model of human needs that forms the basis of self-care, called Maslow’s Hierarchy of Needs. Typically, this model is a pyramid representing the most important needs at the bottom, forming the foundation of all human needs. The lower part of the pyramid requires fulfillment of basic needs before we can address other needs. 

Physiological needs form the most basic foundation level, such as air, water, food, shelter, clothing, sleep, and reproduction. If we have met our physiological needs, we can address our safety needs (personal security, resources, health, property, employment) next. After safety needs are met, people seek love, belonging, and connection, followed by self-esteem and recognition. Self-actualization is at the top of the pyramid and means using creativity, morality, and inner potential to achieve your highest potential.

maslow needs

When you think of Maslow’s model, the foundational needs are the best place to start with your self-care. Once foundational and safety needs are met, you can prioritize self-care activities that address psychological needs and beyond. Self-care practices fall into five categories: physical, emotional/psychological, social, spiritual, and professional.

Physical self-care means taking care of your body by eating healthy, exercising, sleeping well, staying clean, and visiting the doctor regularly. Doing fun activities such as walking, dancing, sports, or swimming can benefit you physically, but add a fun novelty spin to self-care. Wearing clothes that make you happy and doing your hair or makeup can help you feel good and take care of yourself. Some self-care tasks, such as resting while sick, can seem obvious but are just as important to remember.

After you’ve taken care of your physical self, psychological or emotional self-care is up next. Taking care of our needs in this category is much more unique to our person. This means doing things you like, learning new things, and expressing your feelings. To take care of ourselves, we sometimes need to remove things from our lives. Taking a day off work, a mental health day from school, or going on a vacation or day trip can be beneficial self-care practices.

Recognize your own strengths and achievements and do comfort activities, whatever that may be to you. Finding humor and discussing issues have a lasting impact on mental well-being as well. If you’re an introvert, like me, social self-care can be a tricky concept to manage. While humans are social creatures, we need to understand that being social can enhance our lives or negatively impact our self-care management.

Social self-care can be as “social” as you want it to be. Those who prefer to spend time in person, meet new people, or do enjoyable activities with their friends will enjoy doing so out of the home. If you are more introverted, spending time with others one-on-one in the home or through video chat may suffice. Remaining social can be as easy as engaging with old friends or reaching out to distant ones. Spending alone time or with a partner is crucial for meeting our physical, emotional, and social needs.

Spiritual self-care can involve meditation, praying, or spending time in nature. You may take time for thought and reflection, contemplate the things that give meaning to your life, or appreciate art you consider impactful. Taking part in philanthropic causes or acting according to your values and morals is another way to address your spiritual self-care.

An area of self-care that gets forgotten is your professional or work-related life. Self-care at work includes balancing work and life, taking breaks, and not overworking. Taking on rewarding projects, improving professional skills, or creating a cozy workspace can benefit your well-being and relationships with coworkers.

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Burnout

Caring for someone with autism or complex needs can quickly lead to burnout. It’s common to neglect our own emotional, physical, and mental health as caregivers of children with unique needs. This can leave us exhausted, drained, and with emotional whiplash.

Burnout can look different for each caregiver and is unique, just as autism is in each child. If you’re in burnout, you’ll notice:

  • Inconsistent emotions or perception of emotional whiplash or being on an emotional rollercoaster
  • You cancel often or do not make plans with others.
  • Limited to no hobbies
  • Limited to no babysitters
  • Neglecting personal appointments like doctor or dentist visits
  • Little to no sleep or poor-quality sleep
  • Feeling numb, resentful, or cynical toward others
  • You are exhausted, irritable, or have trouble concentrating
  • Alcohol or other substance abuse

A caregiver doesn’t have to have all the above listed to be in burnout. Acknowledging burnout is crucial for caregivers to prevent negative outcomes.

Lauren’s Top Self-Care Tips

Self care

While self-care can be an ongoing challenge, even for me, I have learned some techniques and tips that aid in staving off burnout.

  1. Seek help. This is easier said than done. Seeking help requires realizing what you need help with, who to ask, and how to ask. You may have many trustworthy people in your circle who will help. They either don’t know you want help or how to help you. Being able to ask a specific person for help with a specific task can be helpful.

    Asking for help yourself can be an extremely humbling experience for many caregivers. What seems to be harder is accepting the help that is offered by others. Accepting help from others does not make you weak or a bad caregiver. Accepting offered help doesn’t make you weak or bad. Take the hand that’s offered.
  1. Find your support village. I firmly believe it indeed takes a village to raise a child. Finding a village of support can include family, friends, or even professionals for both you and your child. Many autistic children require various types of therapy to learn the skills they need to navigate a world that wasn’t designed for them. The same goes for caregivers; many times, we need a professional to help us navigate life‘s difficulties or to teach us new coping skills.
  2. Take a Break. Managing stress levels and taking proper care of oneself requires one to embrace breaks. Learning to give yourself a break and cut yourself some slack can be difficult. It is tough being a parent or caregiver, especially for children with autism or complex needs. Show yourself some grace. Embrace respite care for your child and yourself which can give you time to rest and recoup.
  3. Try out journaling, gratitude practice, or affirmations. Some caregivers find comfort in reading affirmations, practicing gratitude, and journaling. Try it.
  4. Prioritize time with your partner and other members of the family. Prioritizing time spent with others besides those you are caring for regularly is important to your own self-care and the self-care of others.
  5. Double-tasking is the combining of tasks that either require different levels of effort or make a task more enjoyable. Examples of double-tasking include listening to a podcast while walking the dog or using music to make household chores more enjoyable.
  6. Set priorities, including yourself. Everything in your life cannot be a top priority, but it is important to pick your priorities and to make sure you include yourself on that list. Self-care is important because it enables you to take care of others. You need to be healthy to do it, and self-care helps with that. Remember, if everything is important, nothing is important. Understand your boundaries and say no when needed.
  7. Find an identity/purpose outside of caregiving. You are more than a caregiver. Knowing what fills your cup outside of caregiving is essential. If you can’t complete this sentence, spend some time thinking and soul-searching. “I am a caregiver AND…” 
  8. Pivot. Just like that episode of Friends, the lives of caregivers are much like that giant couch the gang is trying to get up that tiny staircase. If you haven’t learned to pivot yet, embrace it. Learning to pivot when life throws you tiny staircases can help you be successful in life and in your caregiving role.
  9. Practice mindfulness/relaxation techniques (massage, yoga, music, meditation, hot bath). Pick your favorite relaxation techniques and do them. Don’t just think about doing them; if you’re unsure where to start, use the resources below.
  10. Save easier tasks when you’re more distracted. Being productive around children can seem pretty pointless, but some tasks must be done. In my experience, I try to save easier tasks for when my child is around. I reserve tasks that demand more concentration and fewer disruptions for when my child is asleep or someone else is available to take care of them.

Self-care for Autistic children

Autistic individuals experience more daily stressors than neurotypical individuals. Stress can result from sensory overload, social situations, changes, responsibilities, anxiety, or depression.

  1. Connect with others to combat isolation. Autistic children struggle with isolation because of their unique social skills and outlook on the world. Helping your child connect with others can help them combat isolation.
  2. Relaxing activities. Many relaxing activities adults enjoy are also popular with children, though finding the right fit takes time.
  3. Pursue special interests. Autistic children rely on their special interests to regulate and reduce anxiety, which can be a calming tool. Letting your child pursue their interests can help them discover activities that benefit their self-care needs.
  4. Help your child respect their own unique pace. Caregivers have many ways to help their children succeed in school and develop socially. It is extremely important to respect our child’s unique pace and how they best learn. If you push your child beyond their pace, they may struggle with regulating emotions and mastering new skills.
  5. Connect with nature. When all else fails, take it outside. Connecting with nature is one of my son’s favorite types of self-care. Being outside can regulate mood and thinking, and offer a break from the world. Connect with your child by taking a neighborhood walk, playing in the backyard, going to the playground/park, or taking a hike.
  6. Taking breaks is a good thing. My son has difficulty embracing a break when he is attempting to do something that is making him quite frustrated. Taking a break can help us get a new perspective or ideas, or attend to other needs that may make the process easier if we return later. Rushing to finish everything at once isn’t always the best approach. Taking a break allows us to rest our brain or use it differently.
  7. Be an example to your child, and practice self-care together. Just about any self-care activity that benefits you as a caregiver will most likely benefit your child. It is extremely helpful in showing your child how to practice self-care. You can set an example for your child while they observe you completing your self-care or discussing why you’re doing certain activities. The activity can serve as a bonding moment for you and your child.

Conclusion

While this article has covered many options for self-care, your journey will be unique to you. Strategies don’t work for everyone every time. Self-care is not just for crisis moments. Regularly taking care of yourself is the key to finding relief. Prioritizing self-care as a necessity helps you care for yourself like you care for others. I challenge you to choose one thing to do for yourself today, without guilt. Take the time to become a better you.

Resources

The Self-Care Inventory (SCI) is an excellent tool to help determine areas of self-care in which you excel and in which areas may need improvement. This instrument is not all-inclusive, but if you are just starting your self-care journey or feeling lost, it may be one of the best places to start. Below are resources consulted for this article that you may find beneficial as well.

Burnout Presentation

Autism Parenting Magazine

Autism Speaks-Taking Care of Yourself

NAMI Self Care

How to avoid caregiver burnout

5 Tips for Autism Parents Self Care

Autism.org Self Care

Autism Parenting Magazine Self-Care for the ASD Caregiver

APA Self-Care

Self-Care Stress Management Tips

10 Tips for Self-Care

Importance of Self-Care for Autistic Individuals

Measuring self-care in the general adult population: development and psychometric testing of the Self-Care Inventory | BMC Public Health

Self-care research: Where are we now? Where are we going? – ScienceDirect

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