Receiving a diagnosis that your child has autism can lead to a host of complicated feelings. Family members may experience feelings of disappointment, sadness, fear, overwhelm, anger, and often guilt or shame for having those feelings regarding their child. Often times, family members experience grief. Even though no one has died, the grief may be tied to the loss of what you may have once imagined your life and your child’s life would be like. An Autism diagnosis can change everything.
The stages of grief, as defined by Elisabeth Kubler Ross are the following; 1) Denial, 2) Anger, 3) Bargaining, 4) Depression, 5) Acceptance. Though they are categorized as stages, they do not occur in a linear fashion. Instead, they are cyclical in nature and often people cycle through many of the stages multiple times. It is important that if you find yourself experiencing these or any other emotions, you allow yourself to have them.
Try to remind yourself that you are not wrong or bad for having these feelings. Try not to deny your feelings and experience. This will only lead to more shame, guilt, and resentment. The only way is through. Acknowledging your feelings will allow you to move forward rather than getting stuck. Though it can be very difficult to find the time to care for yourself, it is one of the most important things and can impact your family in important ways. Remember that children pick up on energy and mood. They can sense when you are tense, tired, irritated, or fearful.
In order to try and be there for your child, it is important to acknowledge that you cannot do everything yourself and to be able to ask for help. Utilizing your own coping skills, going to therapy, joining a support group, getting out for even a ten minute walk to yourself can all be very helpful for yourself and your child. You will be able to model behavior, self-care, coping, for your child, and will have more of a reservoir from which to give.
After receiving a diagnosis that your child has autism, you may experience an overload of information and feel anxious about where to start. It can be very helpful and lead to better prognosis and outcomes to find services for your child as soon as possible. That way you have some sort of structure for yourself and your child and you are not attempting to learn everything on your own. It will put you more at ease to feel as if your child is getting support and you are able to take action. However, even with services, there can be a large time commitment and a lot of work on the parents end and still a lot to learn. Don’t expect yourself to learn everything right away. Be patient with yourself. The more patient you are with yourself, the easier it will be to also be patient with your child. And, don’t be afraid to ask questions.
If you are feeling stressed, overwhelmed or emotionally triggered, you can try 4 steps to help you calm down and create some internal space for yourself to help you move forward.
Step 1: Bring awareness to the fact that you are triggered (name trigger situation, thought, or feeling). Often this can be the most difficult step, to notice when you are triggered and to step back and name that for yourself. For example, you might just say to yourself, “Wow, I am noticing that I am feeling really stressed right now”, or, “I feel so frustrated and exhausted. I am having the thought, ‘I can’t do anything right. I’m a bad parent.”
Step 2: Feel the feelings you are having as sensations in your body. Notice how the anxiety, stress, anger, sadness, resentment actually feels in your body as sensation. Is it warm in your chest? Hot in your cheeks? Heavy in your stomach? What size of heaviness does it feel like? A football size or a rock size? Try to be curious about how the feelings (you don’t even have to know what they are) are showing up and occurring. I know it sounds strange, but try to do this for 1 minute. Often you will find it makes the intensity of the feeling decrease because you are willing to have the feelings. This is not an exercise to try and make the feelings go away. It is you saying, “ok, I can tolerate them and feel them and just notice them and be curious about them.”
Step 3: Mindfully name and step back from thoughts and old stories. So, if you find yourself telling yourself a story like, “I shouldn’t feel this way. What is wrong with me. I am no good”, just try and step back, notice that those are stories and thoughts and try and visualize them as words floating down a river. Just see them for what they are. Words. Nothing more. They are not truth. And just try and bring some compassion to yourself, telling yourself “It is really painful to have those thoughts and to feel this way. This is an old story that I often go to from my past, etc.”
Step 4: Take a moment to think about what way you would like to act/how you would like to act and show up if you were not angry or triggered? If you were acting from your intrinsic values and not your emotion, what would you like to do? What behavior would you like to be able to choose to enact?
Keep in mind, the behavior(s) your child exhibits are just that, BEHAVIORS. Remember to try and separate the behaviors from the actual child. The child is not their behavior. The behaviors may be frustrating, disappointing, inappropriate, but the child himself or herself is not.
Lastly, there has been a lot of discussion here about what to do if and when you are in a more difficult or negative space, but let’s remember, having a child with autism does not have to be negative. This is a journey and a process that will change the way you look at things, often for the better, if you allow it to. Are you going to be there on day 1 or even on day 500? No, and you will have good days and bad days just as any family members and parents do. Give yourself space to make mistakes and try things that won’t work as well as things that do. Don’t just see the diagnosis; remember to look for and really see your child. And, as a family, sometimes when tensions run high it can be difficult to remember that you are all on the same team and can be one another’s best supports and biggest allies.
Sarah Jane Jocson, MA,BCBA #1-14-9802
Sarah is a Board Certified Behavior Analyst based in Sacramento California. She currently works with children ages 1.5 to 6.5 years old at Applied Behavior Consultants, Inc, and has been in the field working with clients, at ABC’s Center Based Program, she has also worked with families in-home, for clients at care homes, and in their school placement. She has been in practice for 15 years.
Danielle Martino, LMFT (Licensed Marriage and Family Therapist), MFT #84811
Danielle Martino is a Licensed Marriage and Family Therapist with a private practice in San Francisco. She sees families, children, adolescents, and adults. Prior to that, Danielle worked with at-risk youth in Richmond, CA. She has been in practice for 10 years.