The Autism Spectrum Disorder Grief Cycle
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.
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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