Recently, our Spectrum360 family experienced the untimely and unexpected death of a longtime staff member. Often when a death occurs in this manner, the emotional difficulty for those who knew the individual is compounded by the unexpected nature of the loss. Referred to as traumatic loss, this type of death can be particularly difficult to explain to individuals with autism spectrum disorder. It is often difficult to find the words or to know exactly what to say. For those of you who need some assistance in addressing this topic, here is a short Q & A developed with the assistance of Arlene O’Connell LCP of the Traumatic Loss Coalitions for Youth Program at Rutgers – University Behavioral Health and Beth Mahaney, MA, Cert., (certified school psychologist), and the clinician at Academy360 Lower School.

I hope you find thi information useful in talking to your child. If you have more questions or need additional assistance, be sure to reach out to one of the Academy360 Lower School and Upper School clinicians. They are always there to help! ~ Jennifer Miller, LSW, LCSW, S360 Public Information Officer/Family Liaison

What approach should I take in talking to my child about death?

Arlene O’Connell LCP: Coping with the death or loss of a loved one can be very difficult for anyone. In children with special needs, the permanency of that loss may not be fully understood. It’s important, therefore, to be clear about this loss using simple language and prompts, such as videos and/or books, to assist you.

Beth Mahaney, MA, Cert.: One way to demystify the concept is to remind students that every living thing dies it is part of the natural cycle. Flowers and plants die, sometimes a pet dies. Thus it is not something to fear, in fact, it is something that is expected even though we don’t discuss it very often.

What words can I use?

Arlene O’Connell LCP: Dying means that someone, or something such as a beloved pet, is no longer alive. They do not breathe nor do they move. It is forever and they are not coming back.

While many families have religious beliefs about life after death, it is important to remember that for individuals who are concrete thinkers, using words or phrases such as, “He’s in a better place”, “He’s with G_d”, or “He’s been called home” without providing a clear explanation about what death really means can cause confusion. Terms such as these can serve to create the illusion that the departed person is living elsewhere if the individual is not clear that death means the person is no longer living and cannot return.

Beth Mahaney, MA, Cert.: With who have ASD using short concrete phrases that are declarative are best. Examples include, “They are not here anymore” “it’s ok to feel sad” “it’s ok to cry” “You will probably feel better within days or weeks” “When you miss them, you can talk about them, look at pictures of them and think about them”.

What reactions might my child have?

Arlene O’Connell LCP: Your child will likely become agitated and/or angry. He/she may strike out, cry, scream, or yell. He/she may regress back to behaviors you have not seen for a long time, i.e., bed-wetting, thumb sucking, clinging, climbing into your bed…all symptomatic of an earlier time when they felt the most secure.

Sleep and eating patterns are sometimes affected. If any of these behaviors last for two or more weeks, it is time to seek professional assistance.

Beth Mahaney, MA, Cert.: Individuals with ASD may fixate and perseverate on the topic as well as show signs of anxiety. It is best to go back to the short phrases that they are able to comprehend rather than try to generate new language. A Social Story with simple visuals that they can read or look at independently is also a good support.

How can I help my child move on?

Arlene O’Connell LCP: Reassure your child that you are here for him/her and encourage your child to talk to you about how he/she is feeling. Let him/her know that it’s okay to be sad and that you, too, are sad. Share memories of the deceased person, draw pictures, write notes, encourage memories that were positive and made your child happy.

Reassure your child that there are adults in school and at home who will answer any questions that may arise and acknowledge the feelings that he/she is experiencing.

Beth Mahaney, MA, Cert.: Remind them that feelings come and go. And they will feel better soon. Give them one or two strategies to engage in when they feel sad such as looking at pictures, writing and drawing for a limited period of time so they don’t get stuck ruminating about the topic.

What is complicated grief and what signs should I look for?

Arlene O’Connell LCP: Complicated grief is identified as behavior which will not allow for the grieving/mourning process to progress. Non-acceptance of the death is challenged by repeated references of the deceased and/or the death and redirection is short-lived.

Behaviors mentioned above apply here, as well.

What past events might impact my child’s response to this current loss?

Arlene O’Connell LCP: A change in family structure through divorce or separation, the death of a pet, loss of a favorite toy, moving to a new home, moving to a new school, a change of teachers/aides…any and all of these changes may impact on how your child copes with loss.

Beth Mahaney, MA, Cert.: Past crises that have not been successfully resolved may be triggered by another loss. A student on the spectrum may have trouble differentiating that this loss is separate and unrelated most likely to a past loss or crisis. Building personal boundaries and reassuring them that they are safe and healthy and that death is a natural part of life so we have to expect that will affect us occasionally.

What are some resources I might use to help me in talking with my child?

Arlene O’Connell LCP: There are videos available on which are excellent. Sesame Street has several, two that are extremely helpful are: When Families Grieve and Big Bird Talks about Mr. Hooper.

Two books which are useful are The Fall of Freddie the Leaf, Leo Buscaglia, Ph.D. and  When Someone Dies, National Alliance for Grieving Children

Beth Mahaney, MA, Cert.: Social stories pre-written about death and other tough topics are available online or through teachers and therapeutic personnel.