In the third of this 7-part series we talk with Lisa Dinhofer, M.A., CT., expert on grief, loss and trauma about the topic of loss and the cultural expectations that parents with children on the autism spectrum experience, and why they feel guilty about this pain.

People often don’t recognize the on-going difficulty that parents with children on the autism spectrum face. Lisa points out that there is a great deal of misunderstanding about grief – what it was and what it isn’t. Elizabeth Kubler Ross’s work on grief is consistently misappropriated; Ross’s work specifically related to terminally ill patients who were facing their own death and was not meant to be a general statement about bereavement after the death of someone else. Thanatologist’s no longer subscribe to the outdated ‘stages’ of grief theory that dictated a neat orderly process of moving through mourning and then reaching the ‘final stage’ you’re done and all is ‘normal’ again.  This has never resonated with the realities of grieving a loss, and at times caused more harm than good.

Grief is the emotional response to a loss, and it does not have a prescribed expiration date. Bereavement is adjusting to a loss and creating a new normal that incorporates that loss. This adjustment can be a lifelong process that will change over the course of time. Grief and bereavement exist whether for a physical loss due to death or a non-death living loss. Both require the creation of a new normal, and as we discussed in the last segment, adjusting to a living a loss is on-going and typically more painful.

Many parents feel that they are being disloyal, judgmental, or not being a good parent if they have feelings of grief about their child’s autism, because the feel it means that they’re not appreciating their child. The reality is that we live in a culture with expectations and assumptions. The expectation is that our children are supposed to be healthy, charming, wonderful, and beautiful and do things the same way as other kids. The diagnosis of autism can disrupt or even shatter the assumed world of the parent. Grieving the loss of an expectation is not about being a loving mother or father, it’s about grieving the loss of an expectation, and it’s normal!

Some parents feel guilty about grief because they feel that if they grieve it is admitting that something is wrong with their child, or that there is something about their child they don’t like.  Lisa’s council is to accept the feelings of grief. Feeling disappointment over the loss of a dream is a normal response to loss, and it is not a referendum on you as a parent, or a characterization on how you see your child. Remember, as we said before, “what we resist, persists.” As parents, we need to allow ourselves the latitude to experience honest, authentic basic human emotional responses to loss, and not to mischaracterize those emotions. Embrace them for what they are.

Lisa’s expertise encompasses the area of difficult conversations. She suggested that when someone confronts us when we are hurting and suggests that we should “cheer up,” or “look on the bright side,” or “be grateful for what we do have…” that we first ask ourself this question… “do I want this to be a long conversation or a short one?” Is this relationship important, or valuable to me? That can determine the length and breadth of your response. There is no reason to get your blood pressure up if this relationship is not valuable or if it doesn’t really make a big difference in your life whether this person understands your perspective or not.

Secondly, remember that comments of that nature are a reflection of that individual, not of you.  If you become defensive, it means that on some level you are accepting this accusation they are pointing at you. If it is not an accurate accusation, then don’t accept it, and don’t get defensive. If this is not an important person in their life, make it a short conversation. Be a mirror and reflect back to them and respond with:

“…I realize that my situation may be something that is difficult for you to understand, and I can see that by what you are saying that you just don’t understand my situation, and I can forgive you for that….”

The tone in which you speak these words is important; the response needs to come from authentic compassion, not from a snarky place, and needs to acknowledge that the person truly doesn’t understand. Then simply say to them “…you’ll excuse me, won’t you?” and end the conversation. This is not exoneration, it is compassion and empathy, and you are letting them know that they are being insensitive. You will plant a seed there, and maybe from then on the person might have more of awareness of how they impact people, and that relationship may even become a valuable relationship… 

If you do value the relationship, the response needs to come from a place of communicating how the comment impacted you – and again with compassion. You might say:

“…I am assuming you didn’t really mean to be insensitive toward me and make my challenge even harder. But your comment did just exactly that. So, I would hope in the future if you are trying to understand something about how I am dealing with this situation, or how this impacts me or my family, that you might be a little more sensitive and aware of how you ask me about it, and come from a place of curiosity rather than what I perceive to be impatience with me or judgement.”

And then be quiet! Knowing when to stop talking and let a few beats of silence pass is very important and often much more impactful than a whole diatribe. The goal here is to respond with compassion and dignity, to create a more meaningful engagement, and to educate, rather than to express anger, which begets more anger.

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About Lisa Dinhofer: Ms. Dinhofer, MA, CT, is a certified Thanatologist and communication expert with 18+ years teaching, consulting and coaching experience for effective messaging and situational management following: traumatic death and loss, abrupt change and chronic conflict within high intensity front-line occupations and business environments. She is a seasoned educator within: healthcare, social work, mental health, law enforcement, attorneys, child welfare agencies, emergency response preparedness, forensic and mortuary, clergy, Call Centers, non-profit and corporate environments.

Ms. Dinhofer provides emergency workplace debriefings and training on work-related stress, burnout, compassion fatigue and trauma and the unique issues associated with excessive exposure to graphic material within child-crime and at-risk environments. Ms. Dinhofer also facilitates education on loss issues specific to pediatric and adult foster care. Ms. Dinhofer has been a featured presenter at over 100 scientific and professional conferences in the U.S., UK, Middle East, and the Czech Republic and has facilitated over 250 workshops. She is the owner of Koden Consulting Services and Ingeni, LLC Consulting and has been an adjunct instructor in the Graduate Thanatology program at Hood College in Frederick, MD

To contact Lisa: email info@kodenllc.com. www.kodenllc.com