Being a teacher and a counselor of children on the Autism Spectrum in Orlando, I have had the opportunity and the honor to work with some very brave and wonderful families. I have noticed over the years that one thing rings true among the families that I work with when they first come to see me for counseling at Life Skills Resource Group Orlando-something that I didn’t even know had a name until just a few weeks ago. It’s called disenfranchised grief, and it appears to be all too common in the Autism Community. What is disenfranchised grief? Well, it is defined as “the pain of a significant loss that is not openly acknowledged or socially supported” by Dr. Kenneth Doka, who coined the term in 1985. I believe the parents and siblings of children on the Autism Spectrum experience a great deal of disenfranchised grief, as it can be quite difficult for them to find any friends or family members who understand what they’re going through. What’s even worse is that they often feel societal pressure to not say anything about it, so as to not make others uncomfortable by sharing their pain.
Parents are unable to openly grieve the loss of the plans they had for their child’s future-plans that came crashing down around them the moment they heard the words, “Your child has Autism Spectrum Disorder.” After the diagnosis, parents may feel blame and shame and disbelief and fear. While they may be relieved that there is an explanation for what is happening with their child, they may also be unable to openly express their sense of loss at having their typically developing child seemingly disappear and replaced with a different one-one who “looks normal (as people unthinkingly say)” but is very unlike all the others. Those unaffected by Autism tend to be unaware that Autism is a neurological disorder, and seem to view it as more of a behavioral issue. They don’t realize that this is an ongoing and pervasive disorder, requiring continuous support and education. It seems that the most common form of “help” offered by friends and family is suggestions on how to be a better disciplinarian. Many parents of “high functioning” children with Autism are hesitant to even tell anyone that there’s been a diagnosis. If they do inform people in their personal lives, they are given sympathy for awhile. Then it seems they are expected to just get over it (or more importantly, stop talking about it). They notice their friends’ eyes glass over if they start talking about IEP meetings, Occupational Therapy sessions, social skills training, lack of insurance coverage, and/or no personal life. They learn to internalize their pain, and just keep moving. They have to. Oftentimes the unexpressed grief that exists between a couple whose child is Autistic becomes so great that, combined with the demands of caring for the child, it becomes enough to cause the parents to divorce, thereby multiplying the disenfranchisement. There can be an incredible feeling of loneliness that a parent of a child on the Spectrum experiences, especially if they are a single parent.
Siblings of children with Autism suffer just as silently, and just as profoundly as their parents do. They are expected to be mini-caregivers. They are expected to not cause problems. They are expected to live by a totally different set of rules-a more strict set of rules. They are expected to sit in endless waiting rooms for countless hours without complaint. They are expected to “pitch in,” “help out,” “be a good sport,” “be quiet,” “be still,” “be patient.” They are expected to hand over their favorite toy, ice cream, new clothes, iPod, etc.-on demand to their sibling. They are expected to shower their sibling with affection and attention, despite the fact that it’s not really returned. They are expected to understand. If they do have a problem or a concern, as all children do, they find that they have to exaggerate it to be heard. Then they become the cry baby, the drama queen, the klutz, the whiner. They must be perfect, and silent. It’s as if they must give up their childhood for the sake of the other “lost” child. They are left to grieve alone for something they’ve lost, not even knowing what it might have been. They have no one to talk to about it, and if they did, what would they say? Children don’t always have the ability to accurately represent their thoughts and feelings with words. Besides, Mommy and Daddy are busy. Mommy and Daddy are sad. Mommy and Daddy will be mad. Mommy and Daddy need me to be good...
So, what can we to do with all this disenfranchised grief? We start by giving ourselves permission to grieve. We recognize that we have a right to the grieving process; the grief associated with Autism is just as legitimate as the grief associated with the death of a loved one. We find supportive groups and relationships and experts for ourselves and our children. We let others know how we feel, and we remind them that our pain is real. Finally, we look for ways to celebrate the unique path we are on, knowing that we must do this all in our own time. If you’d like help for yourself or your child in dealing with disenfranchised grief, please give me a call or contact me via email for a FREE consultation.. -with fondest regards, Kim.
Kim C. Murphy, MS, RMHCI –