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Bereavement Problems in Children on the Autism Spectrum

"We lost my father-in-law 2 years ago due to a virus. My 12-year-old son with autism [high functioning] was totally devastated. It is not helped by the fact that, before the schools closed, he was spending the time before school and after school at his Grandma’s house and is reminded of Granddad’s absence by his empty chair. Due to the fact that I have to work full time, my sons have spent much of their time from Monday to Friday with their grandparents, so it is like their second home - they even have their own bedrooms there! I am finding it very difficult to help him come to terms with Granddad’s death. He is OK most of the time, but will then fall into a black mood and will overreact to the slightest incident and go into a meltdown. Do you have any advice on what I can do to help him?"

As you know, High-Functioning Autism (Asperger's) is a neurobiological disorder. Kids with autism spectrum disorder (ASD) have difficulties with transitions, social interaction, and responses to social situations. With regard to the emotional aspects of death and grief, your son may react, as you have seen, by getting upset or angry. These reactions occur because he doesn’t fully understand what has happened and why it happened, and due to his ASD, doesn’t know how to ask for help in handling the death of his grandfather. Many people without the disorder react to a death with anger and despair, too.

Many kids with ASD feel that if a beloved relative dies, a “rule” has been broken (i.e., good people should not die), and they feel very hurt. So, when it happens, the child feels betrayed. This can lead to anger and outbursts. In addition, any unexpected event is particularly difficult. You son finds it hard to grieve and doesn’t know how to handle his feelings of despair and sadness. He may not be able to express his grief through tears or talking.

Even if your son can’t ask for help, it is definitely called for in this situation. Patience, understanding, and support on your part are required. Be sensitive to his need to talk if he exhibits one, and don’t put up barriers to it, such as telling him he’s too young to understand what happened. If he doesn’t show a need to discuss the death, you should open a discussion anyway. It may be wise to ask a counselor or psychologist to talk with him, too.

Kids and teens with ASD have average or higher levels of intelligence and will appreciate honest, simple explanations about death and grief. Explain that birth is the beginning of life, and death is the end of life, and that when someone dies, we feel bad because we loved the person, didn’t want him to die, and we will miss him. Don’t tell him his grandfather “went to sleep,” “went away,” “got sick,” that only old people die, or that the death was “God’s will.” All of these are open to misinterpretations, such as “If I go to sleep when I’m sick, will I die?” Or, “Will God make me die?” At his age, your son is able to understand that death is irreversible and that he will die eventually, but he needs reassurance that he will most likely live a long time.

Some questions your son asks may seem insensitive, for example, “Are you going to die, Mom?” He may show curiosity about dead animals or ask about what happens physically to dead things. These questions may seem gruesome, but they are a way of learning about death. Children should not be made to feel guilty or embarrassed about their curiosity.

Your son may feel that the death of his grandfather, who was a good person, was unfair. This is the time to gently explain that many things that happen in life are not fair and that we should try to help each other cope when unfair things happen. Perhaps, discussing some nice things to do for his grandmother would help him feel needed. Many of the kids respond very well to being needed by others.

Your son will need a lot of time to accept this death and may react with anger at unexpected times. Be understanding. Time will help ease the pain. Use books to help him understand and provide a good model of acceptable behavior for him. Also, keeping a journal of his thoughts about his grandfather may help.

Moms and dads should be aware of normal childhood responses to a death in the family, as well as signs when a youngster is having difficulty coping with grief. It is normal during the weeks following the death for some kids to feel immediate grief or persist in the belief that the family member may “come back” someday. However, long-term denial of the death or avoidance of grief can be emotionally unhealthy and can later lead to more severe problems.

Once kids accept the death, they are likely to display their feelings of sadness on and off over a long period of time, and often at unexpected moments. The surviving relatives should spend as much time as possible with the youngster, making it clear that the youngster has permission to show his feelings openly or freely.

The person who has died was essential to the stability of the youngster's world, and anger is a natural reaction. The anger may be revealed in boisterous play, nightmares, irritability, or a variety of other behaviors. Often the youngster will show anger towards the surviving family members.

Kids who are having serious problems with grief and loss may show one or more of these signs:
  • acting much younger for an extended period
  • an extended period of depression in which the youngster loses interest in daily activities and events
  • excessively imitating the dead person
  • inability to sleep
  • loss of appetite
  • prolonged fear of being alone
  • repeated statements of wanting to join the dead person
  • sharp drop in school performance
  • refusal to attend school
  • withdrawal from friends

If these signs persist, professional help may be needed. A child and adolescent psychiatrist or other qualified mental health professional that specializes in ASD can help children accept the death of a loved one and assist parents in helping children through the mourning process. 

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