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The Autism Spectrum Disorder Grief Cycle

Shock through depression

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.

Guilt through acceptance

Guilt. Parents feel guilt about having a child with an ASD. After the diagnosis, the guilt is typically expressed as, "What did I do to cause this to happen?" "Was it the glass of red wine I had at my birthday party when I was pregnant?" "I shouldn't have allowed the doctors to give him those vaccinations." "Am I being punished for something I have done?" Later on, when they revisit the guilt stage on the cycle, it revolves around, "I'm not doing enough for my child." "I should have taken a second mortgage on the house so he could have more therapy and alternative treatments."
Tip for parents: Don't beat yourself up. All parents do what they think is best at the time. It is not a good idea to use hindsight to try to analyze and critique the past. Nobody's perfect. Take the time to sit back and think about all the positive things you have done for your child, and how your child is growing and developing under your care. Pat yourself on the back for what you have done, and think about where you can go from here. The past is the past; focus on the present.

Shame or embarrassment. At some point parents will feel shame about not having a perfect child—"What will people think?" Later, as the child gets older, they are nervous about people's reactions to the child's behavior in public. They catch someone staring at their child. They think, "Gosh, I wish he wouldn't flap his hand while he is walking." "His lack of eating skills and his disruptive behavior is ruining everyone else's dinner at this restaurant." "People must think I'm a terrible parent when he acts this way." And then, of course, they feel guilty about feeling shame, which puts them on another part of the cycle.
Tip for parents: Get over it. Do not worry about what others are thinking. In the big picture, it doesn't matter. Think of it this way: your child is different and interesting and your life with him will not be boring. Develop a sense of humor. Stand straight and tall, look confident. Just think about making this a positive experience for your child, not about the others. When people see that you are at ease with your child in public, or see that you are trying to cope with a challenging behavior, they will respect you.

Fear and panic. Parents will inevitably feel fear and panic: "What will happen to my child?" Times of transition can bring about these panic attacks. "How will he adjust to the new school?" "Another new teacher! Is she going to understand his learning style?" "What will he do after high school?" and of course the biggest panic attack comes from the dreaded, "What will happen to him and who will look out for him when we are dead and buried?" or "I want him to live with us at home but we can't handle it anymore. Is there a good safe place for my child?"
Tip for parents: Take some time for yourself, take a few deep breaths, or practice your favorite relaxation technique and then acknowledge that what you are feeling is fear of the unknown. Use the fear and panic to propel you toward gathering knowledge about the choices you have in regard to whatever issue you are feeling fear about. Write down everything you think the new teacher should know about your child and give her the letter with a smile, telling her you hope it is helpful information. Find out about his options after high school. Visit group homes or residential schools to see what they are really like. Just having the knowledge about the options will make you feel better. If you are not happy with the options, perhaps you will find yourself at the anger stage and that will propel you to organize with other parents and advocate for better choices or, better yet, create them.

Bargaining. After a while parents start to bargain with whatever higher intelligence or God they believe in. "If the forty hours of behavioral therapy per week for two years cures my son, I will adopt a poor family to send money to every week for the rest of my life." "If it is only autism, I can accept it, but if it's mental retardation as well…" "If he can learn to communicate in some way…" The process of bargaining is a way for the parent to accept a part of the problem without taking on the whole problem.
Tip for parents: As time goes on, you will find that you are bargaining less and less as you start to have more acceptance of your situation and get to know your child, his personality and potential, as well as the options out there.

Hope. Parents have moments when they feel hopeful. "We may make it through this." "This diet/therapy/medication seems to be helping our child." "He is getting this concept." "He's keeping his behaviors under control." Just like any parents, there are times when we are encouraged by the accomplishments of our child or we meet professionals or treatments that are having a positive impact on him.
Tip for parents: Celebrate and cherish each and every one of these moments. Tuck them away and pull them out on the days when you feel bleak and could use some hope. These are the moments that make you feel that life is good. Treasure them, and share them with those who have shared your sorrows so they can also share in your joy.

Isolation. Sometimes parents feel isolated—"My child is the only one who is not acting appropriately." Or they seek isolation because they do not want to see the reminders that they have a different child or a different life from everyone else's, or because they feel that they must protect their child.
Tip for parents: Sometimes you feel an overwhelming need to isolate yourself from others because the pain of seeing other parents interacting normally with neurotypical kids is too great. It is not a good idea to stay isolated, however. To get through this, use local associations to find other families who have children with ASDs or other disabilities. You will feel more comfortable with them, as you will understand each other's concerns. Eventually, over time, you will come to feel more comfortable spending time with other families who are not in the same situation as you.

Acceptance. Parents will feel acceptance of their child's ASD only after having experienced and worked through some of the other emotions discussed above. Acceptance means that they are feeling some control over the situation and their feelings about it. The challenges may not be solved to the level that they wish, but they see that they are able to cope and live with the hand they have been dealt. Acceptance also means that they realize that there will be days filled with anger or grief, and days that they will have strength. On any given day they will be in one spot on the grief cycle or another, but it's OK. The parent is learning to cope and knows it's all right to have those emotions. Also, accomplishments that may seem ordinary and small to others will be moments they savor and cherish. Acceptance also means that they look at their child and see a person, not a disability.