A Message From David Kessler
I was privileged to co-author two books with the legendary, Elisabeth Kübler-Ross, as well as adapt her well-respected stages of dying for those in grief. As expected, the stages would present themselves differently in grief. In our book, On Grief and Grieving we present the adapted stages in the much needed area of grief. The stages have evolved since their introduction and have been very misunderstood over the past four decades. They were never meant to help tuck messy emotions into neat packages. They are responses to loss that many people have, but there is not a typical response to loss as there is no typical loss.
The five stages, denial, anger, bargaining, depression and acceptance are a part of the framework that makes up our learning to live with the one we lost. They are tools to help us frame and identify what we may be feeling. But they are not stops on some linear timeline in grief. Not everyone goes through all of them or in a prescribed order. Our hope is that with these stages comes the knowledge of grief s terrain, making us better equipped to cope with life and loss. At times, people in grief will often report more stages. Just remember your grief is an unique as you are.
Before You Start Grieving For Your Autistic Child
Three years ago, I was the parent of a newly diagnosed autistic child. When the doctor first gave me his diagnosis, a myriad of emotions swirled though my mind, through my heart throughout my entire body.
I was too busy and overwhelmed at the time to put my finger on exactly what those feelings were. His twin brother was diagnosed a bit later, so you can imagine just how flustered I was!
A few months after the initial diagnosis, I found some parenting groups on Facebook filled with thousands of mothers who had been in my shoes before. I reached out in these groups for guidance and hope.
While I did find useful advice from some of the members, there were others who told me I needed to give myself time to grieve and mourn the loss I was feeling. Several parent bloggers I started following encouraged me to do the same.
I didnt understand what they meant. Mourning and grieving are almost always associated with the death of a loved one. My kids are right here!
To me, grief is an all-too-familiar, unbearable heartache that grips my entire soul and doesnt let go. Why were these parents throwing around the term so loosely?
As it turns out, many of them were actually told by their doctors that grieving is a natural and valid response to learning their child might be disabled. Even the most prominent autism advocacy organization writes about the five stages of grief in their First 100 Day Kit.
I dont believe they are accurate words to use.
What Are The Stages Of Grief For Parents Learning Of A Disability In Their Child
Stages 1-3
Shock and distress at hearing bad news: Parents need to feel comfortable expressing their emotions to the PCP. If parents are embarrassed to express their emotions, they are less able to attend to the information.
Denial: Can be a useful defense mechanism for parents mastering the new information however, prolonged denial impedes adaptation.
Anger: In a natural response to loss of the expected typical development of their child, parents often ask, Why is this happening to us and our child? It is important parents are provided an outlet to express anger, rather than turn it inward. Be aware that anger may be directed at you as the messenger, and try not to take it personally.
Stages 4-6
Bargaining: Parents often hope that with lots of intervention, their child will be normal. Parents may think they can cure their child of ASD if they engage in certain therapies, and sometimes are willing to spend considerable of resources toward that goal.
Grief: Grief when parents start to worry about the childs development. Grief for parents of children with ASD is cyclical: renewed grief can occur with each developmental milestone that is not met and with each life event that does not go as the parents had expected Chronic grief occurs over time as the demands of raising a child with a disability mount.
Discussion
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What Are The Challenges For The Pcp In Discussing This Difficult Diagnosis With This Family
- Assisting the parents in processing a potential emotionally upsetting diagnosis
- Explaining medical terms, such as Autism Spectrum Disorder, and the levels in a manner that parents will understand
- Parent concerns that their child wasnt accurately evaluated and disagreement with the diagnosis
- Parental questions about causes of ASD and over-diagnosis or labeling of children
- Guiding parents to see the value of early intervention and assisting them in making wise choices about alternative therapies and testing
Why Do Parents Grieve Their Autistic Children
Before I jump too far into this post, let me make something very clear: I understand that an autism diagnosis for your child comes with a LOT of big feelings.
The doctors can fill you with paralyzing fear telling you what your child might never do.
You might feel dread about telling friends and family and trying to explain to them what autism is.
You might feel guilt and wonder if you caused your childs autism.
You might even feel a bit relieved because finally someone is giving you some real answers.
And let me tell you, all of those feelings are totally valid, and I respect each and every one of them.
But theres a major difference between feeling sad or scared and feeling grief.
So through this post Im going to unpack a few reasons that I feel that normalizing grief over living and healthy autistic children is actually harmful.
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The Autism Spectrum Disorder Grief Cycle
Shock and disbelief. The first reaction a parent usually has when hearing the diagnosis, even if they suspected something was wrong, is disbelief. “There must be some mistake.” “This can’t be happening.” At this point, the parent usually does not process exactly what has happened or the enormity of what has just been said. They often go into automatic-pilot mode and sit through the rest of the meeting without really taking in any more information. Some parents may even feel physical pain, as if someone has torn them open. They may feel as if they have been smothered in a dark heavy blanket and are unable to see or hear or breathe.Tip for parents: Leave the meeting and allow yourself time to react to what you have heard. React however you want to react. Don’t do anything or make any decisions until your body stops reacting. Make an appointment to come back another time, when you have had a few days to process the initial shock. Make a list of questions to ask. You may find it helpful to talk to close family and friends you may wish to isolate yourself. Take time for yourself.
About The Art Of Autism
The Art of Autism is a 501c3 nonprofit. We are an international collaboration of talented individuals who have come together to display the creative abilities of people on the autism spectrum and others who are neurodivergent. Our mission is to provide a forum to connect with those who wish to employ these abilities. The Art of Autism accepts many art forms, including blog posts, art, poetry, video submissions and requests for book and film reviews. We seek diverse viewpoints including those from autistic people, parents, siblings, therapists, and others. We look to partner with organizations with similar goals for awareness, acceptance, educational events and the provision of opportunities for our participants.
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Codes Grouped Under The Diagnostic Process Category
3.1.1. Anticipation
A childs acquisition of different psychomotor, cognitive, social, and linguistic skills is something the family looks forward to during the childs first years of life. Families usually know the normotypical age at which the different developmental milestones are reached, sometimes comparing the childs development with that of another child of a similar age, or with a older sibling.
Most of the mothers had already been observing certain signs that made them suspect and/or become alerted to the possibility that the child might be affected by some disorder. Consequently, they had been expecting it by the time the diagnosis was communicated to them. In these cases, this anticipation cushioned the impact of the diagnosis.
I already knew, I saw things in my son, so I expected it.
At 18 months, but I knew since he was born.
B. His wife had already noticed since he was a very young boy. She knew that something was wrong with him . It was a major blow, but I already imagined it because I saw it. Because he had been doing very weird things since he was a little boy
It was kind of what we had been expecting. It was not a slap in the face because we had suspected it .
3.1.2. Age and Professional Who Communicated the Diagnosis
The 5 Stages Of Grief: Using Our Emotions To Help Us Heal
We have likely all experienced the terrible pain of losing a loved one and we all know how difficult it can be to deal with. It can feel unbearable and as if the pain will never end. There is a cycle of grief that we all go through and it involves so many different emotions including sadness, anger and confusion. These are all understandable and are part of the healing process. Understanding and using them can help us to heal. The 5 different stages of grief are denial, anger, bargaining, depression, acceptance.
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The Six Stages Of Grief/acceptance
FearNot just fear, but absolute terror is commonly felt because of the global erosion autism can bring to the family. Fear can seep into every aspect of the marriage and the family unit: fear of the unknown, fear of the childs and familys future, fear of your own ability to handle the physical and emotional stress, fear of your ignorance of what autism is, fear you will fail yourself, your spouse and your child on any and all fronts. At the moment of diagnosis, life changes.
I often hear from couples where one partner gets stuck in this stage, and its more often mothers than fathers. Men want to act women typically have to process and unfortunately, autism can be an endless loop in which it is easy to get stuck. Not just stuck, but paralyzed from making decisions. Unfortunately the nature of autism requires that parents quickly begin educating themselves about autism and treatment options and make decisions about their child’s future at least his or her immediate future. Yet, I have often talked with frustrated fathers who want to pursue dietary and biomedical intervention but the mothers are afraid to move forward for fear of making a mistake. Family backgrounds and core personal beliefs affect to what extent fear immobilizes a parent in this stage. And, while this one is the toughest to overcome, get through it you MUST. There are five other stages to go through before real positive changes begin to happen.
Discovering What Works
If You Dont Deal With It It Will Deal With You
This statement is about more than denial. In my counseling practice, I primarily treat parents raising children with autism. While every parent goes through the denial stage, whether it is for ten minutes or several years, dealing with our grief requires more than just accepting the diagnosis. We need counselors, friends, and professionals to help us with parenting skills, marital strife, and self-care. After the diagnosis, I took off like a racehorse out of the gate, doing all that could be done to help my child. Two years into it, my son was thriving in a wonderful program, but I was in a fetal position on the couch with severe depression and panic attacks. Take self-care seriously.
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The Five Stages Of Grief A Journey
Grief is the response to the loss of any significant object or person in our lives. The process of grief follows such losses as death, divorce, other broken relationships, financial loss, lost job, amputation, loss of health, ageing, and abandonment of significant life goals or dreams. It also includes the many subtle losses that affect people.Dr Bruce Litchfield
When we lose a loved one, we enter into a world of grief. The Oxford Dictionary defines grief as: Intense sorrow especially caused by someones death. The initial reactions that come after a shock to learning of a loved ones passing away can differ from one person to the next. Below are the most common responses and stages of grief.
The 5 Stages of Grief in a Nutshell
1.DenialTo help us survive the loss and make sense of this overwhelming shock in or lives. We can begin to feel numb to the loss and try not to feel what has happened as a way to cope or to slow down the absorbing and processing of such a painful experience. As denial fades a person becomes stronger to face the realities of the grief causing event.
Grief can take three different courses: a normal grief response
Bereavement Advice & Support For:
This section looks at the subject of bereavement, how it can affect autistic people and what we can do to help
Bereavement is something that we are all likely to go through at some point.
Bereavement is what happens when someone or something we care about, like a pet, dies. We sometimes express this through grief but there is no right or wrong way to deal with bereavement. Everyone copes differently with the emotional and practical aspects of the death of a loved one.
It helps if the people supporting a bereaved person understand that the challenges some autistic people face in everyday life will get worse during this time. For example, if someone already experiences sensory differences, social anxiety or delayed processing, these may get worse while they are coping with grief.
You can find more general information about bereavement on the NHS and Mind websites.
This page gives you an overview. For more information, select from the menu above or the guide links below.
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How Can I Help
There is limited research, information or guidance on the mosteffectiveapproaches to help autistic people deal with death and bereavement, but there are things you can do to help.
- Autistic people need to be included in rituals and routines around bereavement.
- Autistic people should be supported to understand, express, and cope with grief.
- Talking therapies may be helpful for some autistic people in dealing with grief.
- Talk to the autistic person about what they are going through and help prepare them for what might happen.
If you are working with an autistic person who is experiencing bereavement, you can help them in the following ways.
Autistic people have said that they felt they needed additional support with the grieving process.
There are many types of counselling and therapy including cognitive behavioural therapy which has been shown to be effective for some autistic people. All talking therapies should be adapted to be effective for autistic people.
Im Disappointed The Most Important Feeling To Explore
Emotions such as grief and mourning are safe to talk about. They often come with sympathy, and theyre hardly ever challenged. But admitting that youre disappointed about your child and their/your future Thats something else entirely.
Having these feelings doesnt make you a bad person. In fact, all parents experience them to some degree when their children take a course they didnt expect. My father was disappointed when I became pregnant during college and hadnt gotten married yet. He probably had the perfect life in mind for me The perfect wedding, the perfect husband, the perfect 2.5 kids Wait, thats weird.
His disappointment was narcissistic in nature, and typical of parents everywhere. He had a vision for my future, and I messed that up. Its a common occurrence in parenthood, but one worth noting.
But these particular feelings of disappointment over your childs autism diagnosis are rooted in ableism, and you may not be ready to confront that yet. Ableism is engrained in us from the time we were kids. Our society idolizes football players and models. They belittle wheelchair users and obese people.
At the most basic level of this disappointment is a feeling that disabled children are somehow defective, or not as valuable as typically developing children. Of course, you dont feel that way about your own child. But you may suspect that others will because in the past you may have had those same thoughts about someone else.
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The Five Stages Of Grief
DENIAL Denial is the first of the five stages of grief. It helps us to survive the loss. In this stage, the world becomes meaningless and overwhelming. Life makes no sense. We are in a state of shock and denial. We go numb. We wonder how we can go on, if we can go on, why we should go on. We try to find a way to simply get through each day. Denial and shock help us to cope and make survival possible. Denial helps us to pace our feelings of grief. There is a grace in denial. It is natures way of letting in only as much as we can handle. As you accept the reality of the loss and start to ask yourself questions, you are unknowingly beginning the healing process. You are becoming stronger, and the denial is beginning to fade. But as you proceed, all the feelings you were denying begin to surface.