“It was the best of times, it was the worst of times”. Probably nothing better describes the emotions of raising a child with Autism Spectrum Disorder (ASD). You love your child very much and cannot imagine a life without your child. You appreciate all of the precious developmental milestones your child achieves that other parents take for granted. Your child has his or her own unique characteristics that makes him or her adorable, funny, and beautiful just like any other child. Even his or her quirks can be quite endearing. These are “the best of times”.
However, unlike the parents of typical children, you are grieving the loss of the child you expected and the hopes and dreams you had for him or her . Periodically, throughout your child’s life you feel immense sorrow and grief. On top of this sorrow, you feel guilt for grieving at all, as if your child was not “good enough”. You may even feel guilt because you wonder what you did wrong to deserve this heartache and pain. You do not know how you can watch your child struggle for the rest of his or her life. Even with all of this, you will likely also have to endure you child’s aggression, self-injurious behavior, and severe tantrums with little love expressed back to you in return. You try to be strong and usually you are, but there are times that your strength feels not enough. This part of autism is certainly “the worst of times”.
To understand your pain you must first understand more about grief. The most famous model of grief is that of Elisabeth Kubler-Ross’ five stages of grief: denial, anger, bargaining, depression, and acceptance. These stages were originally developed to explain stages of grief that occur after someone close to us dies. But these stages can be more complicated when applied to other life stressors such as learning that your child has a life-long disorder such as Autism Spectrum Disorder. The acceptance stage is much more prolonged and complicated for parents of children with ASD. And you do not simply pass through these five stages with an ultimate tidy resolution of grief at the end. Acceptance is also made more difficult by the fact that your child’s future prognosis can never be accurately given by any professional. As a result, you do not know what level of disability, cognitive ability, or behavior needs to be accepted. As such, especially during important life transitions, the grief is reactivated when your child fails to meet the same goals as other peers or is unable to engage in important rites of passage. Your pain and healing is like a wound that keeps being re-opened. You think you are better for weeks, months, or years and then something restarts the pain all over again. This has been termed “chronic sorrow”. (1)
The good news is that the Meaning-Making Theory of Grief is better suited to parents of children with ASD. This theory came from the assertion made by Viktor Frankl, a Holocaust death camp survivor, that finding meaning in suffering helps us to cope. This has been developed further over the last 10-15 yrs. (1)
One of the best ways to find meaning is through spirituality and/or religion. According to many studies, greater than 90% of people in the United States believe in God. In 2009, researchers examined how three different aspects of religion (religious beliefs, religious activities, and spirituality) affected the outcomes for mothers of children with ASD. Religious beliefs are a set of ideas and values concerning a person’s relationship with God and religious community. Spirituality refers to finding meaning from life experiences and may not necessarily be related to a belief in a higher power. Religious activities refers to a person’s involvement in specific organizational or nonorganizational events. (2)
In this study, both religious beliefs and spirituality were associated with fewer negative and more positive social and emotional outcomes. These positive outcomes were further elaborated on and noted to be better parenting affect, less negative parenting affect, less depression, higher self-esteem, positive life events, life satisfaction, optimism, internal locus of control, and psychological well-being. (2) On the contrary, religious activities were associated with more negative and less positive outcomes. This may be related to the discomfort parents experience when attending religious activities due to their children’s tantrums or fear of them having a tantrum. They likely feel judged as being bad parents due to their child’s unpredictable behavior. As further evidence of this, another study showed only 5% of parents reported that they would turn to their congregations for help, while 66% reported that they would likely express their personal beliefs in private prayer. (2)
Parents of children with ASD either use positive or negative religious coping with important implications. Positive religious coping is defined as “seeking a positive relationship with God and expressing closeness and harmony with God”. Negative religious coping is defined as “blaming God or believing that God had abandoned or punished them”. Positive religious coping is associated with improvements in personal resources and social relationships, whereas negative religious coping is associated with more depression and anxiety.
As a parent of a child with ASD, you need to understand that the grieving process is typically intermittent and prolonged. This process may even last a lifetime. Understand that if you feel this way, it is “normal”. Do not feel guilty. It is okay to have the mixed feelings of loving your child unconditionally and not wanting anything to change about him or her, while at the same time also grieving the loss of the hopes and dreams you had for your child. You must find a way to achieve acceptance to help you and your family cope and even thrive. A good support system is vital to reducing your stress as are developing your religious beliefs and spirituality. These will improve your overall mood and satisfaction with life.