COPING WITH THE AUTISM DIAGNOSIS AND BEYOND:
Karen Siff ExkornTips from a Mother Whose Child Recovered
By Karen Siff Exkorn
Author of The Autism Sourcebook: Everything You Need to Know About Diagnosis, Treatment, Coping and Healing (ReganBooks/HarperCollins 2005).
“Your child has autism.”
These are the words that no parent wants to hear, and yet over 58 million parents all over the world have heard them.
In a world where everything is so fast-paced, parents of newly diagnosed children with autism are told to get their children help immediately. Research shows that early intensive intervention is the key to helping children with autism. And just like that, parents are off and running-searching to find the right treatments for their child, looking for ways to get subsidized for services, and readjusting their entire lifestyles to meet their child’s needs. In the meantime, there is very little time to take a breath and actually process the diagnosis. As a result, many parents find themselves feeling overwhelmed and overwrought, not fully understanding or acknowledging the emotions surrounding their child’s diagnosis.
Oftentimes parents of newly diagnosed children feel as if they are the only ones experiencing the heartbreak of a diagnosis. While they might know intellectually that there are others out there in similar situations, there is a certain sense of existential loneliness that can occur-a feeling that no one else really understands what they are going through. As much as family and friends may reach out to help, their efforts are often rejected by the parent who feels disconnected from the world at large.
It’s crucial that parents make some kind of connection-if only to understand that they are not alone on their emotional journeys. Ask any parent who has been there-the beginning is the hardest part.
If you are a parent who has recently experienced the news of your child’s diagnosis, you may be asking yourself: How am I supposed to cope in a world that has been suddenly and unexpectedly redefined by my child’s diagnosis?
Here are some helpful coping strategies:
o Allow Yourself to Process and Accept Your Emotions
Many parents experience a roller coaster of emotions, often associated with the stages of grieving described by Elizabeth Kubler-Ross. Parents may experience Denial (“This is not happening to me”), Anger (“Why me?”), Bargaining (I vow to be a better person ifâ€¦”) and Depression (“My life is over”). Ultimately, the goal is to reach the stage of Acceptance.
If you don’t allow yourself to acknowledge and respect your feelings, you may get stuck in one of the stages of grief. I know this first-hand through personal experience and through my consulting work with parents of newly diagnosed children with autism. My initial reaction to our son’s diagnosis was shock, followed by brief forays into the stages of denial, anger and bargaining, before plunging into a depression that lasted for almost one full year. My husband was in the denial phase for months. I’ve learned through consulting with parents of newly diagnosed children that it is not uncommon for parents to experience different emotional reactions for different amounts of time.
One of the most important things to remember is this: Don’t judge your feelings. Many people mistakenly attach meanings to their feelings-depression connotes weakness or anger connotes a lack of control-when in fact feelings are just feelings. This statement is not meant to be trite; it’s meant to alert those who may be judging themselves harshly for having negative or overwhelming feelings.
It’s also crucial to make a distinction between experiencing feelings and acting on feelings. Acknowledging feelings of depression and acting on those feelings are two different things. It’s perfectly okay and natural to feel depressed, as long as it’s not consuming you to the point where you are unable to function effectively to help your child. If you do feel as if your depression is all consuming, then make sure that you reach out to a professional therapist or support group for help. Often, the act of sharing feelings with others can help to relieve your emotional burden.
o Know that Men and Women Have Different Emotional Responses
Research shows that mothers and fathers respond differently to a child’s diagnosis. Overall, mothers seem to experience the impact of a child’s diagnosis more intensely than fathers (Sharpley, Bitsika and Efremidis (1997); Seltzer 2001). Mothers respond with more depression and guilt to a child’s diagnosis than fathers (Gray 2003). Their guilt is often manifested through expressions of regret: “If only I had eaten a healthier diet during my pregnancy” or “I should have noticed my child’s symptoms earlier.” Mothers also are more open to venting their feelings about the diagnosis, whereas fathers tend to suppress their emotions.
As you can imagine, the gender differences in responses can cause tremendous stress on a marriage. Communication can break down as couples express emotions differently or not at all.
Just as I advised you not to judge your own emotional state, it’s important not to judge your spouse’s. If your spouse is still in denial while you have already entered the race to find treatments, it can be hard to resist the urge to scream, “Snap out of it!” The spouse in denial usually believes that the other spouse is overreacting and may be overly critical and/or try to avoid dealing with the situation at all. For obvious reasons, neither of these reactions is helpful, and most likely will produce a deeper wedge in a relationship that is already feeling disconnected. Sorting out your own feelings surrounding the diagnosis is hard enough without having to deal with your spouse’s, but the reality is that you will have to do both.
One of the best ways to handle marital stress is to use active and open listening techniques. Most of us have been taught effective communication skills when it comes to expressing ourselves verbally, but we haven’t learned effective listening skills. When we do listen, we have an agenda; we’re already formulating our next thought or argument, instead of staying in the moment and openly listening. Psychologist Carl Rogers emphasized the importance of empathic listening. According to Rogers, “People only listen when they feel listened to.” It is only when a person’s feelings are acknowledged and respected that he or she can get to the point of feeling deeply understood-of feeling “heard.” Feeling heard without judgment can allow a person to go on to express more feelings.
One active listening exercise that couples’ therapists recommend is to sit across from your spouse and allow your spouse to talk. Don’t interrupt. Just sit and actively listen. Instead of reacting defensively, try to reflect feelings and show compassion. Say, “You seem upset about our son’s diagnosis” or “I understand your reaction.” Many people don’t like to use the word “understand” because they assume that it implies agreement. But understanding does not imply agreement; it simply means you are listening in good faith.
In addition to trying this exercise on your own, you can also go to a couple’s therapist, who can act as a mediator and facilitator in helping you and your spouse work through your feelings constructively so that you can communicate more effectively.
o Go into action mode to help your child-be proactive rather than reactive
While this might seem contradictory to what I’ve mentioned previously, it is not. I’m not suggesting that you deny your feelings, but I am suggesting that you respect them and figure out a way to compartmentalize them so that you can focus getting your child treatment. I cannot emphasize enough that early intervention is the key to helping your child, and you are responsible for getting the treatment services he or she needs as soon as possible after the diagnosis.
Separate your heart from your head. This is the easiest and most effective way to deal with helping your child get treatment and all of the business surrounding it. I often coach parents to go into “business mode.” This is a technique that I developed when I coached executives in my former career as a management consultant. By assuming the role of a businessperson, you allow yourself to focus on the business at hand, which is helping your child. In this state of mind, you will find it easier and more effective to handle phone calls to doctors and therapists, make decisions about your child’s treatments, and deal with financial issues surrounding your child’s diagnosis.
How do you enter into business mode? It’s similar to what actors do when preparing for a role. You get into the mindset of a businessperson, by thinking and acting like a businessperson. Often times, dressing the part can help you achieve this mindset. Make a list of your goals, prioritize them and then get to work. You don’t have to have a formal office-you can set up a makeshift office in your kitchen. In my case, even though I was feeling quite despondent after our son was diagnosed and rarely felt like getting out of bed, l forced myself to get dressed in proper business attire and arranged an office setting that included my computer, a phone, a notebook dedicated to autism information, and some books on autism. I set up a daily to-do list to keep myself organized and focused. For example, when my goal was to get our son’s services covered through our local early intervention agency, I made a list of key contact persons (including a lawyer, parents who had received services, and treatment providers), and researched my legal rights. I made phone calls, sent emails and researched on the Internet.
The ability to make intelligent, informed decisions on your child’s behalf is based on your ability to actively pursue the right information. There is a lot of information about autism spectrum disorders out there, and it’s important that you sort out what is best in terms of your child’s individual needs. Read books, attend conferences, and speak with professionals in the field and other parents who have a child with an autism spectrum disorder. Be proactive in getting your child the help he or she really needs.
o Give yourself a break
After your child is diagnosed, helping him or her can often become the primary focus of your life. Many parents feel that every moment is taken up driving their child to doctor’s appointments and treatment sessions such as speech therapy, occupational therapy, and behavioral therapy. In our situation, because I was managing our son’s home therapy program (which consisted of 40 hours/week of one on one ABA, Applied Behavior Analysis, therapy), I barely left the house for months. And even though friends and family encouraged me to take breaks, I did not. That is, not until I myself began to reach the breaking point. My stress level became unmanageable; I experienced constant headaches and sleep difficulties.
Here’s what I learned: You must help yourself in order to help your child. You must carve out time for yourself-even if initially it’s only a few minutes a day-to take a walk, meet a friend for lunch, or do something that is unrelated to autism. Many parents I consult with tell me that they don’t have time to take breaks. What I suggest is that they make time. Sometimes, I even recommend that parents actually write down “Break” on their daily schedules. If you find yourself in the position where you are feeling consumed by your child’s disorder but feel too guilty to take breaks, then keep in mind the following: Allowing yourself to take breaks will help you to reenergize and take control of your life. Taking care of yourself will help you be a better parent to your child with autism.
Author’s note: (The terms “parent” and “spouse” are used in this article for the sake of simplicity. Their use is not meant to exclude single parents, caretakers, guardians,
significant others and partners.)
Gray, D. (2003) Gender and coping: the parents of children with high functioning autism. Social Science and Medicine, 56, pp. 631-642.
Seltzer, M. et al (2001) Families of adolescents and adults with autism: uncharted territory. In: International Review of Research in Mental Retardation, L.M. Glidden (ed.) San Diego: Academic Press.
(Available from the National Autistic Society Information Centre.)
Rogers, C., “Experiences in Communication,” lecture at California Institute of Technology in Pasadena, CA. Fall, 1964.
Sharpley, C.F., Bitsika, V. and Efremidis, B. (1997) Influence of gender, parental health, and perceived expertise of assistance upon stress, anxiety, and depression among parents of children with autism, Journal of Intellectual and Developmental Disability, 22(1), pp. 19-28.