Thursday, March 27, 2008

Autism and Parental Grief

Week's theme (after a brief diversion): grief

Most people who become parents children with autism do not realize that their child has or will Autism Spectrum Disorder (ASD) until after their child is born or adopted. A diagnosis of autism can come as quite a shock. Sometimes a diagnoses is late in coming because at least one parent is in denial that the child is not developing as expected. Denial that a young child is not developing as expected is fairly common, I believe. So is a general sadness (or even depression) that one's child will have difficulty achieving independence and obtaining the milestones of graduation, marriage and having children of their own.

For example one of the moms of the five featured children on Autism: the Musical (which I reviewed in yesterday's post) admitted she went through a period of depression. If you look at the Model of Grief first introduced by Elizabeth Kubler Ross in her 1969 book On Death and Dying you'll see that depression is one of the five phases of grief the author describes. I'm not sure if the mom's depression can be directly related to her daughter's autism, but it is quite possible. It's also possible that she had struggled with depression long before her child was born. It's hard to know when writing about a complete stranger.

It's worth noting that the extent to which a person goes through these different phases can vary. For example the depression phase can be mild and last for a brief period or it can be moderate to severe and last for years. If I remember correctly, the home video clip of the autism mom in the documentary was dated at 1999. The documentary, Autism: the Musical was filmed last year at some point and it seemed like this woman was still struggling. Her worries and sadness in about her child's condition were quite apparent. I can only hope that someday this woman will come to terms with her angst despite having had her marriage collapse in the last year and find some peace here on earth.

In comparison other moms like Elaine Hall, who created the The Miracle Project, get to the point where they become positive and proactive. Elaine seems to be at the stage of acceptance and is doing her best to help her child and other children on the spectrum and their parents as well. Not every parent can accomplish something this big. I, myself, am more of a supporter than a starter of projects like these. I also realize that there are many parents out there in need of more support. My advice to those parents is if you do not have the energy or motivation to start an organization benefiting people with autism, then do your best to support those that do. Doing something good and proactive will help you feel better about your situation. By supporting a project you believe in, you'll also more than likely help a parent who is really struggling.

Anyway these are the five stages as listed on Wikipedia under the heading The Kübler-Ross Model:

Denial: "It can't be happening."
Anger: "Why me? It's not fair."
Bargaining: "Just let me live to see my children graduate." (More like what will happen to my child after I die?)
Depression: I'm so sad, why bother with anything?"
Acceptance: "It's going to be OK."

Also From Wikipedia:

"Kübler-Ross originally applied these stages to any form of catastrophic personal loss (job, income, freedom). This also includes the death of a loved one and divorce, Another significant personal loss happens when people realize that they suffer from diminished or no fertility. Kübler-Ross also claimed these steps do not necessarily come in the order noted above, nor are all steps experienced by all patients, though she stated a person will always experience at least two."

I'm not the first blogger in the autism community to address autism and parental grief. At least one post was written two years ago. I liked what Brett Miller, (who is in the process of moving his blog from the blogger site of 29 Marbles to came up with as far as stages for parents that have children with autism.

Here are his stages:

"1. Denial - unfortunately, unavoidable
2. Confusion - again, unavoidable
3. Understanding - the process a parent takes to understand the situation. In this step, will answer the questions that come from the confusion stage.
4. Plan - based on understanding gained in previous step, make a plan for your life ahead (something parents do with all kids)
5. Act - live life to the fullest, adjusting the plan as your understanding grows."

I'm thinking those of us who have had their child diagnosed with autism a few years ago or more may agree with his stages. I certainly do. What do you think?


Casdok said...

Yes i agree. Ive also seen parents get stuck at various stages unable to move on.

J said...

Hi Casdok. I Always appreciate your comments. : ) I hadn't thought of getting stuck at a stage until I wrote this post. But those categories of grief aren't necessarily gone through in a quick progression with every stage hit are they? I wonder if regressing back (from acceptance to anger, etc) is possible too?

kristen said...

So glad I found this blog as I have just found out recently our son has Autism. Can't wait to read more.

Autism Reality NB said...

Perhaps some go through these "stages".

Others do not.

I did not.

Anonymous said...

I have found that I continually go through these stages. I rotate through them repeatedly. I have been told that is normal and healthy. Especially as we see growth followed by regression or additional health concerns come up with our daughter M.

I try to be very understanding of parents in all of the stages. We all have our different ways of coping and for some people certain stages take longer to get through than others. I grew up with a disabled sister and was around many disabled children and adults my whole life. I think that has made a big difference for me. I am able to see a future for M and it looks wonderful. Challenging of course but lovely nonetheless.

I also think a stage parents go through is the need to find a cure, to heal the child. I find that understandable and went through that phase myself. It was quite painful for me. Not to mention very costly. I have not went back to that phase but do have doubts in how we handle M's ongoing health struggles and learning issues.

I hope parents are never too hard on themselves and seek help when needed. My younger sister was the one who first told me I needed to get help when M was three. I was not happy and was not sleeping since M was not sleeping. The doctor told me it was 'situational depression'. Going on medications for me made all the difference in my ability to cope and move on through the grief cycles. Your post raises a very good topic, one that people are often hesitant to discuss honestly and openly.

J said...

To Kristin: Welcome. Hope you find this blog helpful. Best wishes--jml.

To Autism Reality nb: You are correct. The reaction of autism parents various as much as the symptoms and personalities of individuals with autism. I'm glad you didn't get hit with the burden of grief because it seems so many people do.

To Marla: I can identify with you. My child was found to have a single dysplastic kidney opperating at about 60 percent efficiency at the age of eight--a few years after being diagnosed with autism. It was quite the shock. I too regressed back to a brief period of grief, but I should note that the kidney diagnosis helped me put my son's autism in perspective.

Thanks so much for the time you took to comment on this one. I'm always grateful for your insights in regards to my posts.

Elissa - Managing Autism said...

Hi Julie - I've been away from the computer for the week and have just caught up on your week's posts... right on the mark as always!
I, like Marla, tend to move through (or cycle through) these stages... I think that for me, different experiences at times tend to bring up the different stages.

J said...

Hi Elissa. Welcome Back. : ) The discussion on this post has been enlightening for me. Thanks for sharing.

kathleenw2 said...

I agree. I like the comment about cycling through the stages again and again. It depends on what else is going on and how your child is doing. Things go around and come back. Life gets in the way. These kids progress at such a different rate, speed and path than other kids.

Shirley said...

I am thrilled to see your reference to parental grief. I am a Masters Student currently conducting research on "disabilites" and parental grief. If you and any of the readers of this blog are willing to answer a few short surveys on this, that would be wonderful. Please send an email to:

I feel this is a subject worthy of more research and validation.