Our goal is to simplify the information gathering and evaluating process. Our approach is to provide multiple perspectives from leading authorities and varies websites on autism related topics. This will provide our readers the opportunity to gather multiple viewpoints from a single location and form the best-educated decisions for their family’s needs.
Disclaimer: The Autism Resource Foundation provides general information to the autism community. The information comes from a variety of sources, and the Autism Resource Foundation does not independently verify any of it, nor does it necessarily reflect the views and/or opinions of the Autism Resource Foundation. Nothing on this website should be construed as medical advice. Always consult your doctor regarding the needs of your family.
How will I deal with this diagnosis?
It’s not easy to hear the news that your child has autism, and realize that your life will be utterly different than you had expected it to be. Daily life with a special-needs child presents many unique challenges. How do you come to terms with the fact that your child has autism? How do you cope once you get over the initial shock? We aim to help you by providing regular features on topics ranging from how autism affects your family to day-to-day survival strategies.
You are never prepared for a diagnosis of autism. It is likely that you will experience a range of emotions. It is painful to love so much, to want something so much, and not quite get it. You want your child to get better so much you may feel some of the stages commonly associated with grieving. You may “revisit” these feelings from time to time in the future. Part of moving forward, is dealing with your own needs and emotions along the way.
Stages Associated with Grieving
Immediately after the diagnosis you may feel stunned or confused. The reality of the diagnosis may be so overwhelming that you’re not ready to accept it or you initially ignore it. You may also question the diagnosis or search for another doctor who will tell
you something different.
Sadness or Grief
Many parents must mourn some of the hopes and dreams they held for their child before they can move on. There will probably be many times when you feel extremely sad. Friends may refer to this as being “depressed,” which can sound frightening.
There is, however, a difference between sadness and depression. Depression often stands in the way of moving forward. Allowing yourself to feel sadness can help you grow. You have every right to feel sad and to express it in ways that are comfortable. Crying can help release some of the tension that builds up when you try to hold in sadness. A good cry can get you over one hurdle and help you face the next.
With time, your sadness may give way to anger. Although anger is a natural part of the process, you may find that it’s directed at those closest to you – your child, your spouse, your friend or at the world in general. You may also feel resentment toward parents of typical children. Your anger may come out in different ways – snapping at people, overreacting at small things, even screaming and yelling. Anger is normal. It is a healthy and expected reaction to feelings of loss and stress that come with this diagnosis. Expressing your anger releases tension. It’s an attempt to tell the people around you that you hurt, that you are outraged that this diagnosis has happened to your child.
You may go through periods of refusing to believe what is happening to your child. You don’t consciously choose this reaction; like anger, it just happens. During this time, you may not be able to hear the facts as they related to your child’s diagnosis. Don’t be critical of yourself for reacting this way. Denial is a way of coping. It may be what gets you through a particularly difficult period. You must, however, be aware of that you may be experiencing denial so that it doesn’t cause you to lose focus on your child’s treatment.
Try not to “shoot the messenger.” When someone, a professional, a therapist or a teacher, tells you something that is hard to hear about your child, consider that they are trying to help you so that you can address the problem. It is important not to alienate people who can give you helpful feedback and monitoring of your child’s progress. Whether you agree or not, try to thank them for the information. If you are upset, try considering their information when you have had a chance to calm down.
You may feel isolated and lonely. These feelings may have many causes. Loneliness may also come from the fact that in your new situation you simply don’t feel you have the time to contact friends or family for company or that, if you did reach out, they wouldn’t understand or be supportive. In the pages that follow, we have some suggestions for taking care of yourself and for getting the support you need.
Ultimately, you may feel a sense of acceptance. It’s helpful to distinguish between accepting that your child has been diagnosed with autism and accepting autism. Accepting the diagnosis simply means that you are ready to advocate for your child.
The period following an autism diagnosis can be very challenging, even for the most harmonious families. Although the child affected by autism may never experience the negative emotions associated with the diagnosis, parents, siblings and extended
family members may each process the diagnosis in different ways, and at different rates.
Give yourself time to adjust.
Be patient with yourself. It will take some time to understand your child’s disorder and the impact it has on you and your family. Difficult emotions may resurface from time to time. There may be times when you feel helpless and angry that autism has resulted in
a life that is much different than you had planned. But you will also experience feelings of hope as your child begins to make progress.
Caring for the Caregiver
Changing the course of your child’s life with autism can be a very rewarding experience. You are making an enormous difference in his or her life. To make it happen, you need to take care of yourself. Take a moment to answer these questions: Where does
your support and strength come from? How are you really doing? Do you need to cry? Complain? Scream? Would you like some help but don’t know who to ask?
“Remember that if you want to take the best possible care of your child, you must first take the best possible care of yourself.”
Parents often fail to evaluate their own sources of strength, coping skills, or emotional attitudes. You may be so busy meeting the needs of your child that you don’t allow yourself time to relax, cry, or simply think. You may wait until you are so exhausted or
stressed out that you can barely carry on before you consider your own needs. Reaching this point is bad for you and for your family.
You may feel that your child needs you right now, more than ever. Your “to do” list may be what is driving you forward right now. Or, you may feel completely overwhelmed and not know here to start. There is no single way to cope. Each family is unique and deals with stressful situations differently. Getting your child started in treatment will help you feel better.
Acknowledging the emotional impact of autism and taking care of yourself during this stressful period will help prepare you for the challenges ahead. Autism is a pervasive, multi-faceted disorder. It will not only change the way that you look at your child, it will change the way you look at the world. As some parents may tell you, you may be a better person for it. The love and hope that you have for your child is probably stronger than you realize.
Here are some tips from parents who have experienced what you are going through:
Get going. Getting your child started in treatment will help. There are many details you will be managing in an intensive treatment program, especially if it is based in your home. If you know your child is engaged in meaningful activities, you will be more able to focus
on moving forward. It may also free up some of your time so you can educate yourself, advocate for your child, and take care of yourself so that you can keep going.
Ask for help. Asking for help can be very difficult, especially at first. Don’t hesitate to use whatever support is available to you. People around you may want to help, but may not know how. Is there someone who can take your other kids somewhere for an afternoon? Or
cook dinner for your family one night so that you can spend the time learning: Can they pick a few things up for you at the store or do a load of laundry? Can they let other people know you are going through a difficult time and could use a hand?
Talk to someone. Everyone needs someone to talk to. Let someone know what you are going through and how you feel. Someone who just listens can be a great source of strength. If you can’t get out of the house, use the phone to call a friend. Link to Family Services
“At my support group I met a group of women who were juggling the same things I am. It felt so good not to feel like I was from another planet!”
Consider joining a support group. It may be helpful to listen or talk to people who have been or are going through a similar experience. Support groups can be great sources for information about what services are available in your area and who provides them. You may have to try more than one to find a group that feels right to you. You may find you aren’t a “support group kind of person.” For many parents in your situation, support groups provide valuable hope, comfort and encouragement. Link to AS Support Network
Try to take a break. If you can, allow yourself to take some time away, even if it is only a few minutes to take a walk. If it’s possible, getting out to a movie, going shopping, or visiting a friend can make a world of difference. If you feel guilty about taking a break, try to remind yourself that it will help you to be renewed for the things you need to do when you get back.
Try to get some rest. If you are getting regular sleep, you will be better prepared to make good decisions, be more patient with your child and deal with the stress in your life.
Consider keeping a journal. Louise DeSalvo, in Writing as a Way of Healing, notes that studies have shown that “writing that describes traumatic events and our deepest thoughts and feelings about them is linked with improved immune function, improved emotional and physical health,” and positive behavioral changes. Some parents have found a journal as a helpful tool for keeping track of their children’s progress, what’s working and what isn’t.
Be mindful of the time you spend on the Internet. The Internet will be one of the most important tools you have for learning what you need to know about autism and how to help your child.
Source: Autism Speaks