What is “grief of diagnosis”? The diagnosis of a child with a language, learning or behavioral disorder isn’t easy for any parent. Whether you’ve suspected that a diagnosis was coming or the words “Autism Spectrum Disorder” (or any other pediatric diagnosis) was something you didn’t expect to hear, it is very likely that you will experience feelings of grief or loss.
The Cyclical Stages of Grief
Grief happens after a loss. But it doesn’t always look the same. Many parents go through a cycle or stages of grief after a diagnosis. Like the grief you may experience in other situations, this could start with denial. It may then move on to anger, depression, bargaining or negotiation, and acceptance. But this doesn’t mean you could or would move through each stage independent of the others.
Instead of a straight line, the grief of diagnosis often happens in cycles. As a non-finite loss – or a loss that doesn’t have a definite end – the grief you experience may come in waves and move backwards or forwards through different stages. It’s common for parents to eventually start to accept the diagnosis, only to have a trigger push you back into anger or sadness. But this doesn’t necessarily mean that you won’t or can’t get back to acceptance and move into a more positive space.
The Stages of Adaptation With Grief
Along with the stages of grief, you may also go through the stages of adaptation. This cycle starts with a reaction phase. The reaction could correspond to denial, anger, or sadness. After the initial diagnosis you may feel helpless or even fearful.
In most cases, your child will start treatment and as you learn more about the diagnosis and have help from a trained professional you could move into the transition stage. The fear and powerlessness you felt may change into action and advocacy. This is followed by the integration phase – where you would adapt to the diagnosis and begin a path towards self-education.
Time and Grief of Diagnosis
Will time help you through the stages of grief and adaptation? Yes. Will it always positively affect the sense of loss you have? No. Triggers such as social interactions between your child and others, rejections, academic issues, other diagnoses, thoughts about the future, and even social media could bounce you from a perfectly positive moment to anxiety, fear, or disappointment.
As the parent of a child with a new diagnosis, you may feel more than just a general sense of grief due to a non-finite loss. The constant or long-term loss may turn into double mourning. This includes the loss of dreams you have for your child and for yourself. You may have expectations as a parent that go unmet. You may also feel anger at the fact that your child now has to trade basketball practice or scouts for therapy. Or, you may get sad when you think about your child's interfering behaviors, challenges in school or how they don't express themselves in a neurotypical manner.
While sadness and anger are part of grief and loss, negatives won’t fill every moment of your post diagnosis life. Your child will have accomplishments, meet goals, and overcome obstacles! While successes doesn’t mean that you shouldn’t feel a sense of loss, or that anger and sadness won’t sneak up again, you may find that as you reach the integration stage you focus more on education and advocacy.
The Role of the Professional
Professionals, such as behavior analysts, occupational therapists, speech-language pathologist and social workers can do more than just help your child. While the primary purpose of therapy is for your child to receive treatment, a qualified and skilled therapist can help a parent to understand a diagnosis and work through the beginning stages of grief.
You may find that the people around you don’t recognize or seem to gloss over your grief. Known as disenfranchised grief, this sense of loss can happen when a friend comments on how, “You’re lucky that your child is otherwise healthy”, or a family member doesn’t understand why you wouldn’t simply move on as the days, weeks, and months go by.
A quality therapist will have empathy and sensitivity about your sense of loss. While this isn’t to say your friends and family aren’t empathetic, they may not understand the situation in the same way that a professional could. This makes it important to find and work with a treatment team who can help you, your child, and your family in a way that recognizes and respects parental grief of diagnosis.
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