What Does it feel Like to Hear a Diagnosis of ASD for the First Time?

Diagnosis – What does it feel like to hear a diagnosis of ASD for the very first time?

I cannot say for sure I can only speculate that a parent hearing the diagnosis of an ASD for the first time might be or experience a great sense of loss and grief. I can imagine for many it is like the death of a dream. Hard to say and perhaps a truth.

I imagine that like any parent we anticipate the birth of a healthy child without complications, or physical and mental anomalies. Anything less than our idea of perfect might be devastating. As parents we look for the typical milestones of development. We watch for the development of positive social interactions and social-emotional growth.

The first stage of grief is “denial” a very common reaction to loss. When thinking about loss I can only say from my experiences that it is a challenge of strength and spirit and requires great patience, self knowledge, and honesty.

Loss changes how we move forward in the future, how we base decisions for the best interests of the child, the family, and ourselves. How do we begin to cope and hope?

My readings and teachings tell me that a diagnosis of ASD can be and feel devastating. Many parents go into a state of denial and stay there for great lengths of time. What becomes internalized there I wonder? Self blame, guilt, doubt, imperfection? Who was living in a perfect world anyway?

Having a child with an ASD is a gift. It is a gift given to humanity to teach us to see, perceive, to live life more deliberately, with purpose and intent. It is a call for us to give of ourselves, our time.

A child with ASD will have challenges to overcome, will have more learning to do than a typical child, will achieve those milestones – maybe at a slower pace but achieve them anyway. Early intervention and intensive therapies and guidance can support the child with autism in maximizing the potential to live free and socially independent. 

I can only empathize with the new parent who has to struggle with the first time “label” of autism , ASD, Aspergers syndrome. I cannot get inside their head, or their heart, but I do know…children are our most precious treasures on earth, and as much sadness from loss might initially surround us it is imperative to hold heart and move forward to pro-active behavior in educating ourselves, our children, and the community in the nurturing of the child.

About Mary

Hi! I have been providing services for children and young adults with Autism Spectrum Disorders, ages 3 through age 27, for twenty years. I also teach teachers and other professionals strategies and interventions to improve and develop communication skills, social understanding skills, and replacement of stereotypical behaviors. I try to create an awareness and empathic response with professionals working with families and caregivers living with the unique differences and challenges of ASD. My other goals include educating the public about ASD. ASD is a label that provides a common ground for discussing treatment, strategies, and other interventions to help the child or person. The label is not the child and vice-versa. Over the years I have observed many children develop communication skills, experience social success, and decrease and change stereotypical behavior into productivity. The children I work with are unique and wonderous. Like you and I they have specific interests and strengths that are valuable assets to their Quality of Life.
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