Grief and Bereavement

by Elizabeth Graham

Bereavement, or the death of a loved one, as it relates to individuals with ASD and other developmental and intellectual challenges is a topic that currently receives little attention. In her article, Bereavement and Autism: A Universal Experience with Unique Challenges, Elizabeth Graham provides an excellent overview of the topic and draws on her own personal experiences to explain the importance behind supporting an individual with ASD before, during, and after a major loss. In this interview, she provides some additional information about bereavement and offers advice to family members and individuals with ASD:

1)    What are some common misunderstandings about individuals with ASD when it comes to grief and bereavement?

One misunderstanding is that individuals with ASD, typically for those who are considered nonverbal, do not experience grief or understand. From working with adults with these challenges, I have learned that the question is not if they are communicating or feeling emotions – it is what are they trying to communicate and what they are feeling. If an individual has an intellectual challenge and may not be able to understand the concept of death, they may eventually notice their loved one is gone after a while. Some clients I work with live in group homes and their family visits them on the weekend; now if the individual’s family stops visiting, they may eventually notice (even without house staff telling them) and often behavior challenges might arise as a result.

2)    In your article, you encourage family members, friends, and others to let the griever find her or his own way in coping with the death. At what point, is it appropriate and/or necessary to intervene?

It is important to help an individual find her or his way to mourn a loss; how one mourns will be influenced by the culture/faith along with the Mediators of Mourning. My only rule for how not to cope with loss is to ignore reality. The first step to grief recovery is to establish a strong grief support network; the network does not always have to include a clinical professional.

A common loss a child experiences is often parents throwing out broken toys that a child loved to play with. How did the parent help that child cope with the discarded toy? Not many realize that common grief reactions can be seen even when a death was not involved.

If your individual is in school or in a day program (or work), notify the teachers and supervisors and ask them to monitor how well they are functioning. As I wrote in my article, grief counseling right away can be detrimental. I personally know of one instance: A friend of mine (not on the spectrum), her mom died of a terminal illness and she received grief counseling right away and that actually created problems. If grief becomes overwhelming that it is affecting daily functioning, then grief counseling may be a necessary intervention. This would be a good time to see your therapist or contact a local hospice for support. If your loved one already receives support services from an agency, it would not hurt to appropriately increase the amount of support.

3)    What are some ways to help someone with ASD through the grief recovery process?

Keep in mind that you most likely are the person who best knows your loved one with ASD. How do they usually express emotions? How have they dealt with permanent changes in the past (e.g. moving, new school, etc.)? If the individual is a visual learner, I would recommend attending the funeral, and seeing the body if possible; if attendance to the funeral is not feasible, then seeing a recorded video of the service would be helpful (if the funeral/burial service was recorded). Even with those without ASD, and in my personal experience, who attend the funeral and had a chance to see the body have an easier time with reality and that will help with the long-term goal of adapting to the loved one’s permanent absence. When it comes to revealing news of the death of a loved one to an individual with ASD the question should never be if you will tell them; it should be about how and when you tell them.
I do encourage giving your individual details surrounding the death, but only details they can understand. Never lie; always tell the truth. If there are details surrounding the death that your loved one may not understand now, tell them as they get older you will tell them more details. I am personally against the idea of “protecting” your children from the truth. Hiding the truth can have consequences in the future.

Do not use metaphors. If the loved one died of cancer, do not say, “She was sick.” Explain that it was a serious illness that was beyond a stomach ache or the common cold/fever. Again, you know your loved one on the spectrum the best.

If a loved one has been diagnosed with a terminal illness and is receiving hospice care, I personally recommend your individual with ASD to be involved some way. For example, appropriate exposure to the hospice facility is healthy. If they cry, let that be all right; cry together. You can also visit a funeral home in advance; my grief counseling class in college made a visit to a funeral home and we received a behind-the-scenes tour. Just make sure when you take your child that they receive appropriate exposure. There is no denying that knowing your loved one is in hospice is hard. Death, for anyone, is a tough subject.

Questions such as why the loved one had to die or is expected to die are normal. Be honest with your individual with ASD about this; telling them that you may be having the same questions will help them feel less alone. As my friend Barbara Becker-Cottrill, Ed.D., recommends in cases of terminal illness or anticipated death to include a close family member to help transition roles that the terminally-ill family member would typically do. Depending on the relationship, I also would recommend that the individual with the illness explain, if they can, to the individual with ASD what is going on.

Even if they may not appear that they are aware of what is going on, let the individual with ASD know what is going on. When I see clients who are nonverbal, I talk directly to them and I assume they are capable of understanding some of what I am telling them, even if they may not be able to communicate that they do.

4)    You stress that it is important for parents to prepare children for major life events such as the death of a loved one, as everyone is bound to encounter end-of-life situations. What advice do you have for parents when it comes to having this conversation with their child?
It appears that these days reports of death and tragedy in the news are on the rise. Often discussing the death of a stranger is a good starting point. Recently, the Boston Marathon took place, a year after the bombings. Watch YouTube videos with interviews of the bombing survivors (and of remaining families of the victims) and watch them with your children. Facilitate a discussion.

A TV show is also good start. For example, in the show “Dexter”, the mom Rita is killed by a serial killer. Dexter has three kids, one of them a newborn, to look after. Dexter hides most of the truth behind the murder and moves the kids out of the house and in with his sister Debra. The kids get upset because of the sudden changes and Dexter not being open about the murder. If you are familiar with the show, you should probably already know that Dexter’s dad Harry also hid most of the truth behind Dexter’s biological mom’s death and Harry’s past came only to be known to them long after his death; both Debra and Dexter were unhappy to learn the truths so long after the deaths. By Dexter “protecting” his kids from the death of their mom only sets up an unhealthy example of how to deal with death. Personally, I feel Dexter moving out of the house just because a death occurred in the house would be just like a couple moving out of their house because their second or third baby was born at the house – it’s just not logical. How Dexter “helped” his children cope with their mom’s death is not how I would recommend helping your kids cope with death, as it was not how my parents helped me cope with deaths of family members.

Just as parents often tell their kids it is normal to become aroused when seeing someone attractive, I feel that we should be adopting the same approach with children when it comes to death and loss. It is normal for loved ones to feel that something could have been done to prevent the death or prolonged life. It is normal to at first feel you may never experience happiness.

5)    What advice do you have for a person with ASD who has recently experienced a major loss?
Again keep in mind that if you have met one person grieving, you have only met one person grieving and if you have met one person with ASD, you have only met one person with ASD. Consider how the person with ASD handles sudden non-death changes in life (e.g. cancellation of events). If the death was sudden, how will you reveal the news? I suggest parents and caregivers begin now to consider a strategy on how this situation will be handled. To me, this does not sound weird; people often have fire drills which is preparation for an event that could result in death and damages.

Consider who will be part of the grief support team. Just like many who receive services from an agency have a planning session, so too should similar measures be considered in advanced for times of bereavement.

You can never fully prepare your loved one for death, just like parents cannot fully prepare their children for the “real world.” You never “get over” from a loss; you adapt. My advice is to just do the best that you can.

Elizabeth Graham is an autism professional and woman with Asperger’s Syndrome. She is an Autism Waiver Service Coordinator at The Arc of Prince George’s County, based in Largo, Maryland. The Maryland’s Home and Community Based Services Waiver for Children with Autism Spectrum Disorder allows eligible children with Autism Spectrum Disorder to receive specific waiver services and certain Medicaid services to support them in their homes and communities. Prior to working at The Arc of Prince George’s County, she worked in direct support in Montgomery County, Maryland supporting adults with developmental/intellectual challenges who lived independently or in group homes; she also facilitated cooking and social skills classes in a program for young adults with autism who are transitioning into adulthood.

In May 2013, she received her B.A. in Psychology and a minor in Counseling from Marshall University in Huntington, West Virginia where she was a student in the College Program for Students with Autism Spectrum Disorder. During college, Elizabeth volunteered in hospice and at bereavement camps for families and children.

She has presented on the topic of bereavement and autism at the 13th Annual Marshall University College of Liberal Arts Conference and the 22nd Annual Tri-State Psychology Conference at the University of Charleston in April 2013.