There has been consistent research noting that parents of children diagnosed with Autism Spectrum Disorder (ASD) report more stress than parents of typically developing children or children with other developmental disorders such as Down syndrome. When you learn that your child has symptoms of ASD or has been diagnosed with ASD, you’ll have a lot of questions. What is ASD? How did my child get this? Did I do something wrong to cause this? How is this treated? How long will this last? What do I do next? These questions and many more will plague you as you try to learn to navigate this new world. Who can you turn to for help? As if parenting isn’t stressful enough. It wouldn’t be surprising to start to feel overwhelmed, lost and helpless to help the thing you treasure most, your child. So, how might you or other parents/caregivers like you manage this stress? Here are some tips that may be helpful to decrease some of your anxiety.
Be Proactive - Visit your pediatrician
When you see signs that something is not going as you’d expect with your child’s development, seek help sooner rather than later. It is understandable that a child’s development will vary from one child to the next. Sometimes, with the hustle and bustle of everyday life, there’s a tendency to have the “wait and see” mind frame. In some cases, giving your child some time to reach developmental milestones will be fine. However, when your gut tells you that something is not quite right, seek professional evaluation. This evaluation will give you definitive answers about what’s going on with your child. Research supports the use of early intervention for children with ASD to speed up his/her development and reduce the symptoms of autism over the lifespan. So, getting him/her evaluated early will help to reduce your anxiety and give him/her a greater chance of treatment success. Your pediatrician will be able to direct you to a specialist such as a psychologist to evaluate your child and make the appropriate diagnosis.
Learn as much as you can about ASD
The more you know about autism, the better equipped you’ll be to help your child as well as decrease some of the anxiety related to the diagnosis. Educate yourself about treatment options, ask questions, and participate in all treatment decisions.There are many resources on the internet that provide information on just about anything. It may be difficult to know what sites are providing the most accurate information. Autism Speaks and Autism Now are two, among others, that are reputable and will have a wealth of information on ASD. Information regarding signs of autism, theories of causes, how to get your child screened, access to services, types of treatments, research on ASD, etc. is available. Autism Speaks also provides a free downloadable 100 day kit that includes useful forms, resources as well as a week-by-week plan for the next 100 days after getting an ASD diagnosis. These websites will also guide you to resources within your specific state. Also, remember to check with your state legislation for additional information on your rights. Legislation on treatment will differ from state to state.
Join a support group (Face-to-Face or online)
Learning that your child has ASD can be daunting. You don’t have to deal with the enormity of it on your own. It is most likely that this is the first time you’ve heard of ASD. You may be trying your best to gather as much information about ASD as possible. Yet, you still feel the weight of the diagnosis. There’s just too much information. The act of juggling everyday life and learning about ASD can be a difficult task. There is support for you so it doesn’t feel so overwhelming. Support groups with other parents who have gone or are going through the same experience exist to help you. Knowing this is available is good but having the time to attend them is a task in itself. If you are not able to participate in face-to-face groups, at the very least, consider being a part of online forums as well as support groups through social media platforms such as Facebook. These can provide parents with helpful information and a space to express feelings that you may not be able to let out elsewhere in fear of judgment.
Remember that you matter too
The lives of parents are generally hectic. Now, add in the new worries, treatments, doctors’ visits, etc., for your child who’s recently been diagnosed with ASD, and your degree of stress is bound to be multiplied exponentially. Between being their advocate, protector and nurturer, when is there time to maintain other relationships such as ones with your spouse, your parents, siblings and friends? When will there be time left for you? These are the things that will help you maintain healthy body, mind and soul. Yet, you may have limited ability to engage in social activities. As the flight crew member always reminds us, “In the event of a decompression, if you are travelling with a child or someone who requires assistance, secure your mask on first, and then assist the other person,” this is true in everyday life, especially when you have the added worries of caring for a child with ASD. So, try to use your resources to take care of yourself. Some examples of good self-care will be to utilize governmental services such as respite care to take some time off for yourself or with a partner. Schedule lunch dates with friends once a month. Find a quiet space in your home for quick breaks when the stress is too much to handle and be okay with needing to take the break. Be kind to yourself on matters that are out of your control. Continue to nourish your relationship with your partner. Engage in talk therapy. Remember, your well-being is just as important to your child’s treatment and progress as the direct treatment itself. Take care of yourself so you can take care of your child.
Thao Taylor holds a doctorate in clinical psychology from Pepperdine University. She received a bachelor’s degree in psychology from University of California, Riverside. Dr. Taylor began working with children with Autism during her bachelorate years and continuing on through her doctorate work. She has also worked with adolescents in the juvenile justice system as well as adults in community mental health settings. Dr. Taylor enjoys cooking, hiking with her husband and two children and traveling.