Autism and the Extended Family. Raun Melmed, M.D.
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the new and unfamiliar world of autism. Few situations in life are more challenging and emotionally painful than learning your child has autism. Once you recover from the initial shock, the first step is to start learning about autism. Learn the terminology, how your loved one is affected, and what can be done to help him or her grow, learn, and thrive. Learn how to support the child and the immediate family. This is the time to pull together and support one another.
What can I do if I recognize I am in denial or that an extended family member is in denial?
First, allow yourself and/or your family members’ to have the time to react to what they have heard.
Avoid making any decisions until you stop experiencing physical reactions to what you have been told.
Recognize that everyone reacts differently. Respect your family members and your own individual reactions. If you or any member of your family needs time alone, try to organize support, so your alone time does not disrupt the family’s daily routine. Perhaps a caregiver’s services can be arranged to give the family member some much-needed alone time.
Some people find it helpful to talk to close family or friends at this time. Arrange time to talk with a trusted, supportive family member or friend without children present. It may be necessary to clarify boundaries before talking with a supportive person. Tell the person you just need to talk about what you are feeling. Ask the person to just listen and not make suggestions or offer solutions – just to recognize the person is in pain and needs comfort.
If you are the trusted family member or friend who is providing support, recognize that the person may be in pain and offer comfort and a sympathetic ear. If it is okay with the grieving person, write down questions based on what the person says, so she can pose those questions to the appropriate resources at a later time. At this point, avoid offering solutions, agreeing or disagreeing with what the grieving person says or offering opinions about her child’s symptoms, behaviors, or diagnosis.
Recognize that everyone’s reactions are on a different timetable. Respect your family members’ timeframes for reacting and moving to another stage in the grief cycle. Recognize that you may be in a different stage in the grief cycle than they are. When your family member seems to have an annoying attitude regarding your loved one who has autism, step back and think about what stage of the grief cycle they may be experiencing. Understanding the grief stage a family member is experiencing, can help you find constructive ways to respond, instead of feeling annoyed or angry at their reactions. Understanding the grief stage you are experiencing, can help you take constructive actions to move out of that stage and into a more productive pattern of responding.
Use the denial in a positive and constructive way. Gather information from reliable sources. Learn more about autism. Share small increments of printed information with family members who are in denial, once they have moved beyond the initial shock and pain.
Allow yourself time to react. Avoid making any significant decisions or taking action until you have had time to process the initial shock.
Ella’s grandson, Jason, is two years old. When his mother heard he had autism, she was devastated. She cried frequently and insisted the doctors were wrong. She was feeling immense pain and was scared. As her mother, Ella was worried about her daughter and reassured her that she would be there for her. Ella was also grieving about Jason’s diagnosis and questioned its accuracy. She began researching reputable websites for information about autism. She found books and other reference materials from reputable publishers. She shared this printed information with her daughter a little at a time, as she seemed ready, so as not to overwhelm her even more. The more Ella and her daughter learned, the more they stopped questioning the diagnosis; instead, they began learning how to help Jason grow and learn, and also sought therapy for him. They have supported each other in their journey to help Jason thrive, even when they did not agree about some things. Together, they have helped Jason by moving from denial to directing their energy and efforts toward helping him and each other.
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Uncle Wilson was very concerned about Ty’s recent diagnosis of autism. He did not agree with the diagnosis. Ty’s mother, Wanda, was Wilson’s younger sister. Wanda was so upset and seemed to be in a “fog” following the diagnosis. She was still able to go to work, but could no longer keep up with the laundry or other housework. Wilson wanted to simply tell Wanda the doctors were wrong, so Wanda could return to normal. Instead, Wilson realized he needed to be supportive so he called their other siblings and they each helped in their own way. Wanda’s sister came over and listened while Wanda talked about her feelings, and they did laundry together. Wilson watched and fed Ty and his brothers while Wanda and her sister talked. Another sister offered to schedule another appointment with Ty’s doctor so they could go together and ask questions to obtain more information.
Anger
Once a family member has moved beyond the denial stage of grief, he or she often becomes angry. The person who took the child for diagnosis or the professional who diagnosed the child may be the one towards whom they direct their anger. Others direct their anger toward the child, a spouse or ex-spouse, parent, other family members, a supreme being, or even another child for being healthy and typical. This anger may flare at sensitive times, such as in meetings with the child’s educators or therapists. It is okay to feel angry at this stage, but avoid misdirecting your anger at those who are trying to help you and your loved ones. Grieving family members may quickly alienate friends, family, sources of assistance, and others. Direct your anger into something constructive that can help your loved ones. Develop a strong support network. Direct the energy of your anger into advocating for your family member who has autism.
During the anger stage of grieving you or family members may feel:
frustrated or jealous;
anxious or frantic;
irritable or raging;
embarrassed or ashamed.
Signs of being in the angry stage of grieving may include:
Asking “Why me?” “Why my child?” “Why my family?”;
Thinking or saying “It’s not fair.” “We are good people.” “This shouldn’t be happening to us.” “We don’t deserve this.”;
Questioning one’s faith or religious/spiritual beliefs regarding a supreme being;
Self-blame: “This is all my fault. I should not have consumed _____ when I was pregnant.”;
Blaming others: “It’s her fault, she didn’t talk to him enough.”;
Avoiding taking your loved one with autism out in public anymore;
Frantically trying to obtain every “cure” and therapy available and being upset if there is a slight delay in starting the treatment.
Different family members have different perspectives on the child’s diagnosis, causes, treatments, and potential outcomes. Family members may be strained and exhausted. They might feel as if they have been left out, their opinions ignored, their needs neglected. Or they may feel disrespected. This is a time when minor disagreements can quickly evolve into major battles. Recognize when someone is experiencing anger as part of grieving and consider using the supports listed.
Supports to consider using when you recognize you or an extended family member is experiencing anger as part of grieving include:
listening without interrupting. Let them vent. Let them talk about