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naps during the day;
cancels plans at the last minute;
cannot find a babysitter;
is in deep debt, has no extra money, or cannot afford the basics;
frequently goes to, or talks about medical or therapy appointments;
does not attend family or work-related gatherings;
“won’t discipline” his/her child.
Learn more about autism so you can understand why a parent might display some or all of these behaviors. You may be surprised to learn that your loved one wants to socialize with you, but cannot find a babysitter who is trained to care for her child safely. Your employee may be late sometimes because his child has overwhelming panic attacks if he sees a dark cloud while walking to the car. Your co-worker may want to attend social gatherings after work, but must go home so his spouse can sleep before she has to stay up all night with a child who does not sleep. Your cousin may not attend the family reunion because his child cannot tolerate large groups of people and he doesn’t want to disrupt the event for others. Your daughter may not appear to be disciplining her child because she understands that her child’s behavior is due to being overwhelmed by over-stimulation, so the best strategy is to calmly help her child access a less stimulating environment.
Together we can learn how autism affects our loved ones and how we can better support one another. An important step in providing such support is learning how to effectively understand, prevent, and respond to the behaviors of our family members who have autism so they can function more successfully in the extended family network. It is also important to recognize that support can be provided directly or indirectly. Some family members may not be comfortable providing direct support in the form of interacting with the person who has autism, but may still want to help. They can still provide great support by indirectly helping.
An uncle steps up!
Terrell did not have much patience with his nephew, Ben, who had autism. Ben did not talk and seemed to avoid him. Ben preferred to be outdoors most of the time. Terrell was very good at repairing and building. He noticed a section of the fence outside Ben’s house was leaning and offered to repair it. Ben’s parents had been worried that the fence would fall down and Ben might run off, but they were so overwhelmed just getting through each day, that they had not fixed the fence. They greatly appreciated Terrell’s help. Terrell was happy to find a way to help them. He realized how challenging each day was for Ben’s parents. When he came to visit he would look for any repairs that were needed and would take care of them.
A sister’s support
Jaz wanted to help her sister with her son, Beau, who had autism, but was afraid of Beau’s violent outbursts. Her sister was a single mom and could not even cook dinner without numerous interruptions from Beau’s outbursts and demands. Jaz offered to cook dinner for her sister and Beau three evenings a week. She always made enough so there were leftovers for her sister to reheat the other weekday evenings. Jaz also became more familiar with Beau’s behavior patterns when she was at the house cooking. She learned how to predict and prevent many of his outbursts, which helped her feel more comfortable with him. Over time they established a closer relationship. Jaz’s sister greatly appreciated the support.
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A granny pitches in
Eva’s mother knew date nights had been important to Eva and her husband before they had their daughter, Luna. She was no longer comfortable babysitting for Luna, who had autism, but Eva’s parents could not afford a babysitter. Eva’s mother hired a babysitter one night each month so they could continue having date nights.
How Lives Are Affected after Autism is Diagnosed
Grief following a diagnosis of Autism
We often recognize that someone experiences grief when a loved one passes away. However, grief also occurs when someone experiences a significant loss. Several stages of emotional reaction can follow such loss. When parents hear their child has autism, they experience grief due to the loss of the child they envisioned or expected; the loss of the child they dreamed would learn, grow, thrive, and succeed without significant challenges. When extended family members learn that their loved one has autism, they grieve as well. Grandparents grieve over the loss of the grandchild they envisioned. Step-parents grieve over the loss of the stepchild they anticipated watching and/or helping grow up. Close family friends and other relatives also grieve over the loss of the child they expected to know and include in activities and interactions with their own families. Each member of the child’s family experiences the stages of grief differently and at a different pace.
Stages of Grief
Grief is a process. It does not happen in a few days or weeks and then ends. Grief occurs in stages. These stages may overlap and a person may cycle through the grief stages repeatedly. When one family member is at a different grief stage than another, conflict and resentment may occur. Recognizing the stages of grief and which stage you or a loved one is experiencing can help you cope with this process in a more productive way.
Denial
The initial grief stage of denial is frequently associated with feelings of shock, numbness, incapacity to act, and a sense that one is “reeling” from a blow. At such times, a person might think, “this can’t be true,” “there must be a mistake,” “are you sure?” “that doctor doesn’t know what she’s talking about,” or “my child is just putting on an act.” Some people experience physical symptoms such as difficulty sleeping, changes in eating habits, feeling dazed, experiencing a hollow feeling in the stomach, or suffering from headaches, constriction in the throat, or weakness. The initial shock and disbelief may be followed by withdrawal from social situations or isolation. Feelings of sadness, anguish, and insistence that the diagnosis of autism is inaccurate may follow. However, some people demonstrate denial by simply continuing their lives as if the diagnosis was never made.
Here are some of the signs that suggest you or your extended family members are in denial following a diagnosis of autism:
avoiding doing anything to obtain help related to the child’s autism;
avoiding or resisting learning about autism;
saying or thinking the diagnosis is inaccurate after a second opinion, or continuing to pursue more evaluations to prove it is not autism;
feeling “paralyzed” and unable to proceed;
feeling numb or in shock;
pointing out things the affected loved one does that “proves” it is not autism;
directing one’s energy and efforts toward researching to prove the diagnosis is inaccurate;
acting as if the diagnosis never happened;
withdrawal or isolation from others who have accepted the diagnosis.
If you or your loved one is experiencing denial, acknowledge