Autism and Self-Care
What is self-care? Self-care is care provided for you, by you. “Self-care refers to activities undertaken with the intention of enhancing energy, restoring health and reducing stress,” according to Ellen Newman from the Hunter Institute of Mental Health, (now Everymind). It can increase enjoyment in our lives; help us to cope with stressful events and sadness; achieve goals and potential; maintain positive connections with others; better equip us to support our children; and increase our resilience, (the ability to recover quickly from difficulties).
Self-Care is specifically important for autism parents and caregivers, as researchers commonly report that parents of children with autism experience more stress than parents of typically developing children or those diagnosed with other disabilities (e.g., Down syndrome or cerebral palsy). Having a child with autism often places parents/caregivers in the role of not only parent, but teacher, therapist and case manager. This can be a lot for anyone. Autism is a lifelong journey for most families. It asks a lot of us. We are not just managing our children’s daily lives, but navigating complex systems to obtain appropriate supports for them. Daily self-care can help us to manage this.
Gretchin Rubin, a writer who explores human nature, states “If I give more to myself, I can ask more from myself.” Many of us would do anything in our power to help our children. However, if we are feeling tired and overwhelmed, we can not help anyone. We must remember to practice replenishing ourselves on a daily basis. If you do not think you can do this for yourself, think of your loved ones. Do it for them. Within time, I promise, you will see the benefits. I used to think that taking time for myself was taking time away from my son, but as I started to practice my own daily self-care routines, I was able to see the benefits in my daily life. I no longer felt drained and rundown, because I was sleeping better at night, which meant that I had more energy. This energy helped me to be more present, and the time I spent with my son was of higher quality.
Self-care is not easy. It is a practice. You are probably wondering where to even start. First, start by asking yourself some questions. What are the activities that help you refuel and bring you the peace, comfort and energy needed to be your best self? You can think big, (a vacation alone), but also think of smaller daily opportunities like calling a friend, keeping a daily gratitude list, spending time outside, watching a favorite show. What type of music brings you joy? What activities make you completely lose track of time? Do you love hiking, doing yoga, playing basketball, reading, visiting museums or simply taking a leisurely walk? Find time to focus on what brings joy to your life. This in and of itself can be a form of self care.
If you are having trouble coming up with some ideas, here are a few:
Exercise
Rest
Deep breathing/relaxation exercises, meditation
Individual, marital or family counseling
Prayer
Writing in a journal
Respite
Join a support group
Please commit to making self-care a daily part of your day. Start small, even if it is for five minutes a day. Notice how taking time for yourself makes you feel. When you are ready, slowly increase your time engaging in self-care activities. Over time, you will start to see the benefit of taking care of yourself. Be well and take care of you!
The First Three Things to Do When Your Child Is Diagnosed With Autism
1) Breathe. Take a deep breath. This is the same child you woke up to this morning. The only difference now is that the feeling in your gut…you know what I am talking about….that thing, that was not right, but you could not put your finger on it? That feeling has a name, and it is called autism. Your child may have challenges but they also have many gifts, too. Your job, as their parent, is to support them so they can reach their full potential.
2) Get educated. Autism is a spectrum disorder, because it varies from person to person. They say, “When you know one child with autism, you know one child with autism”. I know this is true, because I have seen it over the last decade. Even in my son’s current classroom none of his classmates look the same. Some talk more than others. Some have behaviors. It really runs the gamut, which is why it is important for you to get educated about autism and how it manifests in your child. You are the key, because you, as the parents, are the expert. You just need supports to help them thrive. Two great resources, that were not available when my son was diagnosed, are the Autism Speaks 100 Day Kit, and the Hussman Institute’s Presuming Competence Guide. The Autism Speaks 100 Day Kit provides a step by step guide on steps to take on a weekly basis, as well as offers call logs, and contact sheets for you to fill out. It even provides information about all the different types of therapies/services your child may need. I learned about the Hussman Institute and Presuming Competence when I attended a Transition Workshop in May 2017 and was blown away! Dr. Hussman, who has an adult son with an autism diagnosis, created a guide about presuming competence, meaning that a person with an autism diagnosis has “the capacity to think, learn and understand-even if we don’t see any tangible evidence”.
3) Get organized. The autism journey is not easy or clear. Depending on the supports your child needs, you may be interfacing or case managing a lot of therapists, services, and appointments. If your child received a medical diagnosis, are they also receiving services at school? If your child was “diagnosed” at school and receiving autism services there, do they also have a medical diagnosis? If the answer is no to either of these question, that is a great place to start. Medical and school* diagnoses are different and your child should have access to both to maximize resources. If your answer is yes, were you provided with a treatment plan or recommendations for therapy or services? If so, have you started exploring this plan? There is no time like the present to get started.
If you need guidance and support as you get started, reach out to an autism support group in your area. For families in the DC Metro area, I offer a monthly support call on the second Tuesday of the Month from 7–8pm through my non-profit organization, DC Autism Parents. Please CLICK HERE to register.
*To clarify: in school, the child receives a classification of autism, not a diagnosis.