HELP FOR PARENTS OF CHILDREN WITH ASPERGER'S & HIGH-FUNCTIONING AUTISM

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Helping Asperger's and High-Functioning Autistic Children Cope with the Loss of a Parent

The main purpose of Memorial Day is for remembering the individuals who died while serving in our country's armed forces. Many children in the U.S. have lost a parent in recent times due to military conflict (e.g., Iraq, Afghanistan), and many of them also suffer with a developmental disorder, which complicates matters significantly. The focus of this post will be how to help these “special needs” children cope with grief...

When a family member dies, kids react differently than grown-ups. And, many children with Asperger’s (AS) and High-Functioning Autism (HFA) react differently than “typical” children (e.g., they may see death as temporary and reversible, a belief reinforced by cartoon characters who die and come to life again). Adding to the youngster's shock and confusion at the death of a mother or father during time of war is the unavailability of other family members who may be so shaken by grief that they are unable to cope with the normal responsibility of tending to their “special needs” child.

The surviving parent 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. Kids on the autism spectrum may express their grief and feelings differently, but their grief is still just as powerful.

Below are 30 crucial tips for helping your AS or HFA child to cope with the loss of a parent (or other family members):

1. A youngster who is frightened about attending a Memorial Day service or visiting the gravesite should not be forced to go. But, honoring or remembering the deceased parent in some way (e.g., telling a story, saying a prayer, reviewing photographs, making a scrapbook, lighting a candle, etc.) may be helpful. “Special needs” kids should be allowed to express feelings about their loss and grief in their own unique way – no matter how odd it may seem to others.

2. After a parent dies, some kids will act younger than they are. The youngster may temporarily become more babyish (e.g., demanding attention, talking baby talk, having bowl-movements in places other than the toilet, etc.). This is normal and usually temporary.

3. Avoid too much change at this confusing and distressing time.

4. Balance how much information is given regarding the parent’s death. Too much or too little information may make it difficult for the child to voice concerns or ask the right questions. 

5. Be advised that the child’s anger is often directed at the surviving parent who shared the news of the death. Anger may also be apparent when activities that were previously provided by the deceased parent are no longer available.

6. Be open and honest. Use appropriate words such as “dead” and “death,” and avoid euphemisms.

7. Be patient, because the same questions may be asked over and over again.

8. Be prepared for the possibility that the grieving process of children on the autism spectrum may be profoundly affected by their disorder.

9. Continue routines, keep decision-making to a minimum, and encourage connections with friends, classmates, and other family members.

10. Discuss with your youngster that, with the grieving process, it is common to get headaches, feel numb, ask many questions, worry, blame oneself, etc.  Also, remind your child that he or she needs social support and help, someone to talk to and a place to remember.

11. Don’t exclude your youngster from helpful rituals of death, which will help him or her understand someone important in his or her life has died.  Kids on the autism spectrum need more concrete rituals, explicit directions, and simplified activities.

12. During the weeks following the death, it is normal for some kids to persist in the belief that their parent is still alive. But, long-term denial of the death can be emotionally unhealthy and can later lead to severe behavioral problems.

13. Each child with AS or HFA will react individually to bereavement, so the approach to support needs to be as unique as the child.

14. Encourage the grieving youngster to wear an article of clothing that may be a linking or comfort object to the parent who is gone. Having a pillow or blanket made from the deceased parent’s clothes may help too.

15. Encourage your youngster to keep a “feelings diary” to help deal with all of his or her emotions.

16. Help your child create a grief vocabulary (e.g., sorrow, sadness, heartache, etc.). Children who lack a grief vocabulary to talk about emotions tend to express their feelings through their behavior.

17. If possible, allow your youngster to say goodbye and see the body of the parent who died. Research shows that when kids see the body, they show less behavioral acting-out in the future.

18. Light a candle on special days (e.g., Christmas) and share memories.

19. Listen to the deceased parent’s favorite music.

20. Look together at photographs of the parent who has died and share memories.

21. Make a book about the parent who died.

22. Make a memory box, and allow your youngster to choose what memories go inside.

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

24. Remember that some AS and HFA children won’t react to the parent’s death at first – or may react in a way that is different than you might expect.

25. Remember that most children on the autism spectrum tend to have a very limited number of close friends. Thus, experience of the death of a parent can feel like a catastrophic loss, and the idea of re-investing in other people is very difficult.

26. Remember that returning to school after a loss can be very stressful. Some kids worry about their surviving parent at home alone.

27. Some kids may believe they are the cause of their parent’s death. For example, one boy with Asperger’s believed his father was killed because he had once been angry at his father and wished he would die. Subsequent to the father being killed in battle, the son felt guilty and blamed himself because “the wish came true.”

28. The parent who has died was essential to the stability of your youngster's world, thus anger is a natural reaction. The anger may be revealed in a variety of ways (e.g., nightmares, aggressive play, bad temper, meltdowns, shutdowns, etc.). Often the youngster will show anger towards the surviving parent.

29. There is no way to generalize how each “special needs” youngster will experience loss through death, but such a loss can give rise to resistance to change, phobias, obsessions, lack of understanding and fears, which can be considered by others to be inappropriate reactions.  Kids on the autism spectrum depend on the security of familiarity. They often have difficulty finding words to express their feelings, which is why goodbye rituals are so important.

30. Try to anticipate your child’s reactions, listen and read cues, intervene, ask how he or she feels, talk about the deceased parent, and explain the normal grieving process. 

You will know when your “special needs” child is having serious problems with grief and loss because he or she will demonstrate a variety of behavioral symptoms that are very noticeable (e.g., withdrawal from friends, sharp drop in school performance, refusal to attend school, repeated statements of wanting to join his or her deceased parent “in heaven”, inability to sleep, loss of appetite, prolonged fear of being alone, excessively imitating the deceased parent, depression, loss of interest in daily activities and events, and acting much younger for an extended period).

If the signs listed above persist, professional help is needed. A qualified mental health professional can help your youngster accept the death of a parent – and can assist you in helping your youngster through the mourning process.

When should you definitely refer to a professional? When your child:
  • threatens or talks of suicide (this is particularly difficult because many kids on the autism spectrum also suffer with depression and may generally have thoughts of self-harm)
  • denies that anyone has died, or acts as if nothing happened
  • becomes withdrawn and socially isolated
  • becomes unusually and persistently aggressive or engages in anti-social behavior

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