The Autism Spectrum Disorder Grief Cycle
Shock and disbelief. The first reaction a parent usually has when hearing the diagnosis, even if they suspected something was wrong, is disbelief. "There must be some mistake." "This can't be happening." At this point, the parent usually does not process exactly what has happened or the enormity of what has just been said. They often go into automatic-pilot mode and sit through the rest of the meeting without really taking in any more information. Some parents may even feel physical pain, as if someone has torn them open. They may feel as if they have been smothered in a dark heavy blanket and are unable to see or hear or breathe.
Tip for parents: Leave the meeting and allow yourself time to react to what you have heard. React however you want to react. Don't do anything or make any decisions until your body stops reacting. Make an appointment to come back another time, when you have had a few days to process the initial shock. Make a list of questions to ask. You may find it helpful to talk to close family and friends; you may wish to isolate yourself. Take time for yourself.
Denial. At this stage, parents think there is some mistake which will eventually be cleared up. Even though they may see the obvious and it has been confirmed by a professional, they still think, "There is nothing wrong with my child. They must have mixed up the test results." In denial, parents often seek second or third opinions, or some magical treatment that will "cure" their child.
Tip for parents: Use your denial positively: gather information and learn more about autism. Some parents start "shopping" for services, looking for that one treatment that will cure their child. You know there really is not a magic pill out there, but denial can fuel you to get informed and learn all you can.
Anger or rage. Once a parent has got through the denial stage after the initial diagnosis, they will often be angry. "Why me?" "How come there are people out there with perfectly healthy children and they don't appear to care about, and our poor child, who is the light of our life, has the disability?" Often, the professional who gave them the initial diagnosis bears the brunt of their rage. They may feel anger toward their spouse, toward God (if they believe in one), toward the child, or maybe even toward a sibling for being healthy and normal (which leads to feelings of guilt…). They will feel anger at the disability. At sensitive times, such as when seeking educational provision, this anger may flare up and be misdirected at representatives of the local educational authority.
Tip for parents: Feel angry! You have a right to be. But don't misdirect your anger at the people who are trying to help you. Anger carries a lot of energy with it that can be focused to enable you to be an advocate for your child. Learn to refocus your anger and do something positive with it: perhaps write those letters asking for services or more assessments—just wait a few days and reread them once you have calmed down, then tone down the inappropriate parts before sending them off.
Confusion and powerlessness. You are now entering a world you know nothing about, hearing new words that sound foreign. You are confused: "What does this really mean about my child?" "I don't understand what the doctor is talking about." And this confusion leaves you feeling powerless. Powerlessness results from feeling that now you have to rely on the advice and expertise of others, people you don't even know that well and have no reason to trust: "The specialist says this is the best method."
Tip for parents: Of course you are confused and feel powerless; you have entered a territory you know nothing about. There is a solution: start learning the terminology and the subject, and little by little you will become knowledgeable. And knowledge is power. You will feel less and less confused and more in control once you have the knowledge to make informed decisions. It will take time, but you will get there.
Depression. Sometimes everything seems like a struggle. The struggles to try to cure or change the autism spectrum disorder (ASD) lead to feelings of despair. The idea that this is not the life the parent had dreamed of, that this is not the family they had hoped for is more than can be borne. They realize that autism is 24/7, and that they are on a train they never wanted to board and there is no getting off. The lack of sleep does not help, either.
Tip for parents: This is when you need to take some time away from autism, even if it is only a few hours. Have a good cry and then pamper yourself. Call a friend and do something you really enjoy: meet for lunch, play some golf, go shopping. If talking to friends, family, or other parents is not helping you get out of your depression, contact a counseling service or ask your doctor to recommend a therapist, perhaps even a bereavement counselor.
More on: Autism
Excerpted from Autism Spectrum Disorders: The Complete Guide to Understanding Autism, Asperger's Syndrome, Pervasive Developmental Disorder, and Other ASDs©2004 by Chantal Sicile-Kira. All rights reserved including the right of reproduction in whole or in part in any form. Used by arrangement with Alpha Books, a member of Penguin Group (USA) Inc.
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