You are here

Just Diagnosed and Feeling…

Your life has been turned upside—the vision you had for child’s future has been dramatically altered.

Some parents report feeling some kind of relief after getting a diagnosis, often after a long and frustrating process. At last, they have a diagnosis for the peculiar behaviors and lack of verbal skills. This relief often soon wanes, however, and is replaced by an array of feelings and emotions common in any process of grief. You have the right to grieve; these feelings are justified and should not be considered an over-reaction. The grieving process is different for each person involved with a child with autism—siblings, grandparents, aunts, uncles, and friends may grieve differently. Some of the emotions you and others may feel include:

Shock & Depression: Receiving the news that your beautiful child has a neurological disorder can be a devastating blow. You might see the future image of your Harvard graduate slip away.

It is important to recognize that each family member may grieve differently. Some may throw themselves into work or school, keeping extremely busy and involved. Others dive head first into educating themselves about the disorder, intent on conquering it with knowledge. Some may even seem to skip any kind of grieving process, claiming they’re just thankful that the situation isn’t worse.

However you and your loved ones grieve, it is important to be respectful of the others’ pain and how they cope. Keep the lines of communication open and don’t be afraid to cry. Some find professional help necessary to keep their lives and families together.

Denial: “But he looks so normal. It’s too early to tell if it is really autism. He’ll grow out of it.” These are common responses. Many people, especially parents, are stuck in the denial phase. A label is no reason to avoid or delay helping a child. At best, the child will delay development in areas such as social and communication. At worst, the child learns inappropriate communication skills such as tantrums, damaging belongings, or hurting siblings that are very difficult to replace without herculean effort, time, and money. Time and effort early on pay off in the long run in heaps.

Guilt: Seldom is there a parent who doesn’t think, “Was it something that I did or didn’t do?” We sometimes strain our minds to remember the pregnancy, what we consumed, or even what we breathed. We might try to apply a genetic factor to our situation and run through the family card catalog in our heads, “I remember Uncle Jim as suffering from schizophrenia or depression.”

Some parents are convinced that their child’s affliction is punishment for something they as parents did, said, or felt in the past.

These feelings of guilt are widely felt by parents, especially immediately after the diagnosis, but will dwindle as you become more educated about the disorder. Instead of feeling responsible for your child’s autism you’ll focus on what you are responsible for: loving and supporting this special child who will teach you more than you can imagine, and bring you great joy.

Panic: “How do I tell my family, relatives, and friends? What do I say? What do I do first? How am I going to handle all of this? Will I have to keep him home? Will he ever be independent? Does he have a future? How do I pay for the therapy?” At the onset of the diagnosis, most of us will run through all of the “worst case scenarios” in our minds. Initially, autism is a scary mystery to us. Newly diagnosed parents often exhibit an urgent zeal to know everything possible. Remember, this is a marathon, not a sprint. The likelihood is that your child will need some level of support for several years, possibly for an entire lifetime. For this reason, you’ll need to prioritize your life and carefully analyze your work situation and finances. You must take one day at a time. You have the diagnosis, which is the biggest hurdle for a lot of parents. Now that you know what you’re dealing with, there is no place to go but forward.

Anger: “Why my child?” We are all angry that our children must bear this burden and live a life with a disability. We would trade places with them in a moment to alleviate them from their predicament.

Sometimes the school system brings our anger and frustration to a head. Remember, many schools have limited funds, training, and personnel and are unable to give every student with disabilities the time and help he or she needs. It is up to the parent to fill in the holes.

Anger can be deep, painful, and justified, but the energy that it creates can lead to a positive drive to educate yourself and others about autism.

Hope & Acceptance: In time, as you come to understand how autism affects the thinking process and how your child perceives the world, you will realize that all is not lost. You’ll know what is necessary to help your child, enabling you to deal more confidently with the array of professionals involved in your lives. This is a major step in setting in motion programs specifically suited for your child.

Soon, you will begin to see your child making progress. Autism will no longer be a horrible mystery. You’ll see your child as a unique human being who just happens to have autism. This will not happen overnight. You will have traveled a certain course or journey of divergence before you reach a point of hope and acceptance.

Along the way, some changes may have come to pass regarding your beliefs, your faith, your lifestyle, and especially your fears. What you once may have considered a punishment or curse may become a blessing. You will see ordinary things in a new way. Moments that the average person takes for granted will be moments that you will savor and cherish. A realization that you have been given the opportunity to see the world through different eyes, and feel it with a deeper appreciation will mark the beginning of a new journey of promise and peace. You have walked the walk, and now you must decide what to do with your newfound wisdom.

Some people with autism are successful in college, marriage, and jobs with great responsibilities. They are writers, artists, technology experts, teachers, and Ph.D.’s. Who is to say they have limits? Our children will continue to amaze and educate even the most educated among us.

With continued research, individual and family support, and public awareness the hopelessness of autism will fade away. Remember, by and large, parents do the best they can for their children.