In the second of this 7-part series, we discuss the on-going grief that parents with children on the autism spectrum experience with Lisa Dinhofer, M.A., CT., expert on grief, loss and trauma.
As parents of children on the autism spectrum, we face grief as part of adjusting to the new normal after diagnosis. Lisa defines grief as the emotional response to a loss, which in our cultural is typically associated only with death, but we also grieve non-death losses such as a job, a relationship, a promotion, or the loss of the dreams we have for the future. While the diagnosis can provide relief and affirmation of our experience, we also may have thoughts such as:
“This is going to be a long road for my child”
“What does this mean for my child?
“Are any of the good things I hoped for going to be possible?”
“Why couldn’t we just be normal?”
We have cultural expectations about what our children and infants are going to do at specific points, and when our children don’t follow that timeline, we may have the sense that something is “wrong” with them – something is not lining up with our expectations. Autism is not bad, or sick, or wrong, it’s just different, and unfortunately in our culture, “different” is often characterized as less than, which it is not. There can be wonderful things about those differences that others don’t have. To make a simple analogy, it’s as if our kids are left-handed in a right-handed world. Our culture is not built in the way their brain works, so often they struggle to be functional, social and to fit in; the rest of us do this automatically.
Lisa comments that the “struggle” is very important to why we are talking about this. The struggle is not just for the child or individual with autism, it is also for the pool of people around the individual who are watching that struggling and are not able to “fix” it. As a result they grieve the fact that they can’t change it or fix it, that this is the way it will be.
This is called a “living loss,” which is a non-death loss which seemingly has no end to it. It is a loss that will continue to be a loss and continue to have an impact on us. It can result in depression and fatigue, but also in chronic sorrow. Resolving it requires adjusting our expectations for what is in our future. A living loss means we need to find a way to incorporate:
- Anger or sadness at missed milestones, or other’s achievement of milestones
With autism we tend to grieve over and over again. When we see other families or children who are not on the spectrum achieving milestones, and we can’t help but compare ourselves and recognize that we are somehow falling short, or not making those same milestones, and that can kick off grieving again. Lisa comments that the word “compare” is important to recognize as having an imbalance built in to it. When we compare, we are looking for what is less than and what is greater than. Lisa recommends that in order to help deal with the living loss and the constant adjustment of expectation, we need to become aware of when we are comparing and put that to reality testing. Is this really a case of less than/more than or can we view this in terms of different/different?
Many autistic children and people have capacities, skills and talents that those not on the spectrum do not. When we can begin recognizing what is working, what is “good,” what is special, then we don’t need to compare anymore, and we don’t need to keep grieving what this child won’t or can’t do compared to someone else. They are who they are, and they come into this world equipped with their own specialness. When we can discover that, remind ourselves of that, amplify that for the individual and celebrate that, comparison loses its power to perpetuate that grief and sadness. That’s not to say that you’re not going to feel that grief, you are. We live in a culture that constantly reminds you that your child is different, but from our perspective, we can keep that at “different,” rather than a comparative value.
That’s helpful because it is hard for us to wrap our heads around the idea that our children may not have lives that look like what we hoped or imagined. For example, we may never have grandchildren, and something like that can set of a whole new round of grieving. As parents of children on the spectrum, we have a grief cycle that we go through which is different that someone who has a child with downs syndrome for example. With our kids, we tend to believe that we just need to get through one issue, and then things will be fine. We are always holding out hope that we can help our kids overcome the deficits and then they will be ok, we’ll get back on track and be like everyone else. Lisa points out that is exactly what happens when we have a living loss. There is a recurrent disappointment we experience as a result of the hope that you have that maybe this is going to get better someday, and then you recognize that is not going to happen and you grieve that. That is exactly what a living loss is. Here are some of the thoughts that suggest you are finding yourself habitually disappointed, and you are experiencing a living loss:
“Maybe this is going to change and get better”
“Maybe we are going to get over a hump”
“Maybe it’s not going to be as bad as I thought”
“We are going to go beyond where we are now”
“All we have to do is get this one issue handled, and then we will be fine”
How do you balance having hope with being positive and working towards a better future and not get disappointed all the time? Lisa shares that when we are dealing with a permanent loss, how we define “hope” and “better future,” will change over time. How we define those words will determine how we will feel about those words and what they mean. For example, when someone is in hospice, the original hope for the patient was for a return to wellness, but later in the process, when that didn’t materialize, the definition of hope changed and became “we hope he can be at graduation next month,” or “we hope that he can stay out of pain.” Hope changed from a return to wellness to other things that became meaningful along the way.
Initially a better future for a child with autism may have been our hope. We wished that the autism would go away, but eventually that hope may become something different, such as “I hope my child can learn to tie his shoes,” or “I hope they are going to be able to give me a hug.” It’s all how we define the words that we use whether or not we feel hope. We are in charge of the definitions, so when we make them broad enough, it gives us access to feelings of hope and optimism about the future. It comes back to expectation and perspective. We need to change what we hope for, and change does not imply diminishment, our hopes are different not less. It’s important that we remain forward looking and find hope for different than may have initially been desired. Trying to extinguish hope all together is not healthy because human beings inherently need hope.
In summary, grief is not depression. Depression is constant chronic sadness and disengagement not related to an event, grief is the emotional response to loss. The first thing to do is to allow it. What we resist persists. Grief does not evaporate on its own, it will remain and corrupt our everyday well-being and our relationships. Lisa closes with “I promise you grief is temporary, like waves on a shore. Every day they come in, and they they withdraw. If you feel a sudden upsurge of grief (SUG) let the feeling wash over you and then it will recede. Let it come and let it go. When we make room for our feelings, that is when they stop having power over us, and we regain mastery. Give grief it’s due. It is a sign of love.”
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