Autism Society of Washington, Tri-Cities Chapter

**The Stages of Grieving for the Child

You Thought You Had 

Before the Diagnosis of Autism**

SHOCK - DENIAL - BARGAINING - DEPRESSION – ANGER - ACCEPTANCE - FORGIVENESS - HOPE

Whenever we go through a major loss in our lives, we experience grief. Learning that the "normal" child you thought you had is now diagnosed with autism, leads you to a grieving process for the loss of that child and eventually leads to acceptance and hope for the child as you know them now and for who they will become. There are several natural steps in the grieving process that lead to being healed of the pain of the loss of what you thought you had. These steps may occur in a different order for you and you may go back and forth between some of them before moving on.

The first step is shock, during which the typical response is denial that the loss is occurring. You may put off making decisions or taking necessary actions. You or your spouse may refuse to believe what others tell you and make excuses for the child’s delays. "Boys are slower than girls" or "He’s just not a big talker" may be things you tell yourself, believing it will go away in time.

The next step is bargaining in which you start to acknowledge that the loss may be happening, but attempt to negotiate the loss or to make promises in order to avert the loss. We may try to make a deal with God or whomever we think could help, to have our child back as they were before autism became evident. It is only human to want things as they were before.

The third step is depression in which the individual faces the fact that a loss has occurred and assumes the blame and guilt. There is anger at the loss, but it is directed inward resulting in depression. During depression, eating and sleeping habits usually change to the opposite of what has been usual. The person who ate little may eat too much; the person who didn't need much sleep may now sleep twice as long, and vice versa. There can be a feeling of listlessness and tiredness. You may be bursting helplessly into tears, feeling like there is no purpose to life any more, feeling guilty, like everything is your fault. You may find you feel like you are being punished. There can even be thoughts of suicide. There are many different ways in which this stage of grief can manifest itself. If you at any time in this stage feel like doing yourself any harm please do seek professional counseling. Self preservation is a must.

The fourth step is anger. At some point the individual recognizes that their child is hurt and there is anger toward themselves, doctors, family members, even each other in married couples. The anger step needs to be seen as a healthy progression of the grieving process, but the anger needs to be dealt with and not left to fester. During the anger step people can develop a sense of bitterness. People become hateful, impatient, quarrelsome, uncooperative or unhelpful, and they waste energy in unproductive behaviors. Husbands and wives may blame each other. You may even become angry with your child, even wishing they were not in your life. These are normal emotions, but they can cause more depression and guilt for feeling that way.

The next step is acceptance at which point the person recognizes that the anger only hurts and that the loss cannot be changed or mitigated at this point. The person comes to a realization that a choice must be made either to live or stay immobilized by the loss. They do not experience a sense of contentment or happiness but rather a resignation and a beginning sense of acceptance of the inevitable. Some of the acute pain has subsided and life begins to resume more normal patterns.

The next step is forgiveness. Some people stop their healing process at the acceptance step. They never move through to forgiveness and ultimately hope. Without forgiveness, we cannot be truly healed from a loss. We must learn to forgive our own shortcomings, the hurt we feel for the life we now live, and for life for not being all that we want it to be. Forgiveness frees us.

After forgiveness comes hope. Hope is being able to face the future with a sense of excitement and trust, believing that not only is there life ahead, but that there can be abundant life. This is the final stage of grief. It is when you realize that life has to go on. You should now be able to regain your energy and goals for the future. It may take some time to get here but you can.

Although these stages are generally a predictable part of the grieving process, grief doesn't always move in a straight line. The stages tend to flow together and fluctuate, so it's not always possible to tell which stage people are in. Emotions see-saw, and overwhelming feelings pass and then return. Moods wash in and out like the tide. Just when people think they are "over" it, a sound, smell, or image can send them back into emotional turmoil. This back and forth movement may occur over a period of months, or even years.

It’s important to acknowledge your feelings, but not to give into the destructive ones. Time is the best healer. Your emotions will continue to change. The beginning is difficult, but when you reach out to others around you for support, when you begin to find the things that help your child’s daily life improve, when your child smiles or finally says your name, the joys you will find will mean more than all the pain.

The Autism Society of Washington is here to help you. The Executive Director, Diana Stadden, has a child with autism, and understands many of the emotions and situations you are facing. We offer support groups around the state. Though each of us deals with our pain in different ways, it can be helpful to know there are others out there dealing with similar circumstances and looking for ways to deal with these emotions.

If you need someone to talk to or need resources or information please call our office at (253) 572-5203 or toll free at (888) ASW 4 YOU.