Addressing the “unplanned stress” that accompanies an autism diagnosis

By Jason Neely, Ph.D., LMFT

[This column was published in the Randolph Herald, Canton Journal, Stoughton Journal, Holbrook Sun, Healthy Family News, and Randolph Wicked.]

If you are the parent of a child newly diagnosed with an autism spectrum disorder (ASD), it may seem like your questions and worries are multiplying on a daily basis. How do you choose between so many different treatments? Who do you trust? How will you find the time in your life to make sure your child gets all the proper care? How do you get your family – your spouse, your other children, your parents – on the same page?   

Raising a child is hard; raising a child with ASD has its particular set of challenges. You may find yourself in a place where the questions won’t stop, filled with worries and anxiety, and your emotions seem to overtake everything.

As a couples and family therapist who has worked with lots of parents who have a child with ASD, I would start out by saying that all of this – the endless questions, the worries that may feel like anxiety, and the emotional roller coaster you are riding – is normal. Having a child who will need special care is not something people typically plan for. It’s an “unplanned stressor,” and it takes time for most people to adjust to and manage the unplanned stressors in their lives. 

Even so, unplanned stressors are normal. We know they will happen, whether we’re prepared for them or not. I think we can all agree that the COVID-19 pandemic has caused a lot of “unplanned stress” for all of us.

There are different degrees of stressors, and having a child with a developmental disability is a big one. Yet, couples and families do adjust. They do find successes and they do find hope. 

I offer three broad suggestions for parents to consider as they begin the journey of raising a child with ASD. They are intentionally broad because every child and family is different in what and how much they need. It is my hope that the following guidelines may help parents of children with ASD handle the unplanned stress that often accompanies an autism diagnosis.

  1. Take a moment (or two or three) to have an emotional reaction. Emotional reactions are healthy and normal, and they have helped humans survive throughout history. Allowing yourself to experience emotional reactions will help you get through this special task of raising a child with autism. It’s not healthy or useful to keep them bottled in. This advice goes for both mothers and fathers, and anyone who cares for this child. 

     Keep in mind, though, that too much emotion can also become problematic. We can get stuck in our emotions which causes us to freeze or lash out, and neither of these responses are particularly helpful. When you start to feel like your emotions are overtaking everything, one thing that can help is a to-do list.

  2. Having a to-do list can help you refocus and keep you on track. Take the example of scheduling and attending doctors’ appointments. Remember all those questions you have? Write them down. Doctors and other professionals who will interact with you are great resources to answer your questions and listen to your concerns. 

     Remember that providers may not always have answers. And sometimes they may have answers that you don’t want to hear. This is to be expected. However, they will make recommendations you can act on. Having action items and “doing something” will help stop you from getting too stuck in your feelings. Finding a balance between emotions and actions is key to raising a child with autism.

3.  Make sure emotional needs have a place on your to-do list. Autism is a lifelong disorder with joys, successes, and difficulties. Minimizing our emotional needs will only invite more stress (remember emotional responses are like a phone notification letting us know there is a message we should attend to). 

I talked earlier about allowing yourself to have emotional reactions. Share your emotional needs with others. Nurture and maintain close relationships. The important people in our lives will help us adapt and change with all that life tosses at us. It is important to be able to connect with a partner, family, friends, and even professionals for support in raising a child with special needs.
  
Jason Neely, Ph.D., LMFT, has been working in the world of autism and developmental disabilities for about 20 years. He has worked with individuals, couples, and families in various therapeutic contexts. Currently, he is working in a managerial role helping to improve service delivery and policy. He can be contacted at jneely@mayinstitute.org.

About May Institute
May Institute is a nonprofit organization that is a national leader in the field of applied behavior analysis and evidence-based interventions, serving autistic individuals and individuals with other developmental disabilities, brain injury, neurobehavioral disorders, and other special needs. Founded nearly 70 years ago, we provide a wide range of exceptional educational and rehabilitative services across the lifespan. May Institute operates five schools for children and adolescents with autism spectrum disorder (ASD) and other developmental disabilities, including one in Wilmington, Mass. For more information, call 800.778.7601 or visit www.mayinstitute.org.