Autism Asperger’s Digest | May/June 2013
Once during a conversation with an adult friend of mine, who has autism, the topic turned to death. “I’m afraid of dying,” he said.
“I think most of us are,” I replied, but then I thought to ask him why. His response? “Death really messes up your routine.”
He’s right, of course. To him, death means no more bus rides downtown, no more swimming at the Y, no more going out to dinner with friends, and no more drinking sodas on the weekend. Death is the ultimate change, and even thinking that his routine would be interrupted by such a finite change caused him anxiety. The thought of death and, thus, change, was quite overwhelming. Forget that, once deceased, he would not be around to worry about not having his usual schedule.
Most of us struggle with disruptions and change, and processing the death of a friend or family member is a huge upheaval for us—so imagine what that situation is like for folks on the spectrum who thrive on familiarity and routine and can be easily upset by minor changes. When death arrives, a major change has occurred that is difficult to process.
Don’t Assume, Assess!
It is important when working with individuals who have autism spectrum disorder (ASD) that we as parents and professionals remember that the individual might view death differently than we would expect. Do not assume that the individual with ASD will be confused, sad, mad, happy, scared, upset, or ambivalent. Use your best observational skills to determine what the individual with ASD is thinking, wondering about, worrying about, or feeling. Assess the situation and be prepared for anything.
Don’t Take It Personally
Accidental rudeness happens often, but typically people are on their best behavior when someone has passed away. Normally we tiptoe around such sensitive social situations to be respectful and polite, but a lack of social understanding plus a need to make sense of a confusing situation might lead individuals with ASD to ask “inappropriate” questions or say things that upset others. People on the spectrum might ask seemingly rude questions about how the person died, or what the cremation or embalming process is like. Or, a child might wonder who will take her to get ice cream now that a family member has passed away, leaving others to wonder if she even cares that the person died. Remember, folks with ASD are processing this grief the best way they know how, and it is our job to give them clear, concrete information that helps them understand the situation, answering questions that may be important to them (who will take me to get ice cream, and when!) and also providing information that the child might not directly ask for, but which will be helpful to him.
Don’t Forget to Teach
After assessing the situation and finding out what the child needs to know and learn, it is time to teach facts and skills. Facts such as what happens at a funeral or what happens to a body when someone dies can be addressed through a social narrative. If this is the first time a child is learning of death, there might be a lot of questions, or you may have to decide what basic information you are going to present to a child who doesn’t voice many questions. Find out what the family’s religious beliefs are and incorporate these as appropriate.
Skills that the child may need to learn might include emotional understanding of one’s own emotions as well as other emotions, coping, and relaxation. Some individuals might feel their sadness acutely and need strategies and practice coping with crying spells or redirecting perseverative thoughts. Creating a written or picture choice board with calming behaviors might be helpful, such as listening to music, writing in a journal, or taking deep breaths.
It is likely that you will be dealing with grief at the same time that you are talking to a child about death and grief, so it might be challenging to employ evidenced-based strategies that you may have used before. It is crucial though, not to just “talk it out” with your child but to use visuals that will help communicate clearly what you are explaining regarding death and dying. Schedules, social narratives, Comic Strip Conversations by Carol Gray (Future Horizons, 1994), written rules and reminders, and even a scrapbook of memories can be meaningful visuals that will help provide understanding, comfort, and calm to the person with ASD.
BIO
Katie Brady, LCSW, works with individuals with ASD and their families, and was a therapist at the Chapel Hill TEACCH Center for six years. Read more about Katie’s ASD services at www.katiebradylcsw.com.
Resources
Faherty, Catherine. 2008. Understanding Death and Illness and What They Teach about Life: An Interactive Guide for Individuals with Autism or Asperger’s and their Loved Ones. Arlington, TX: Future Horizons.
Heegaard, Marge. 2009. When Someone Very Special Dies: Children Can Learn to Cope with Grief. Minneapolis, MI: Woodland Press.
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