Grief, relief, and everything in between: parental responses to children receiving a diagnosis of Autism Spectrum Disorder (ASD)

Parents can experience a range of emotions when receiving a diagnosis of Autism Spectrum Disorder (ASD) for their child, ranging from sadness, fear, grief and vulnerability to relief, assurance, and certainty (Carpenter, 2005).
 
On one hand, parents may experience loss and grief as they wish to hold onto their sense of what is ‘normal’ for their child or even reject the idea of ASD being present due to the perceived threat that the label could lead to prejudice and discrimination later on (Scheff, 1974).

Parents may blame themselves and attribute the presence of a diagnosable condition as a direct result of inadequate parenting (Hinton & Wolpert, 1998). Parents may be fearful that the diagnosis can alter the family dynamic and result in a loss of their own identify, sense of self and role as a parent (Boss, 2004).

On the other hand, parents can experience relief, as the emotional distress caused by a child’s difficult behaviour or experience is alleviated by an explanation and opens avenues of support (Legg & Tickle, 2019). Parents could be feeling more confident follow a diagnosis; with a clear label and subsequent targeted recommendations, improvements can be made, and desired supports can be implemented (Griffith et al., 2013). Parents feel more connected to their child as they incorporate the diagnosis into their understanding of the child (Midence & O’Neill, 1999).

This emotional conflict, disharmony between completely different and intense emotional reactions, can be distressing for a parent. The emotional conflict identified above is experienced by most parents going through the diagnostic process and beyond (Legg and Tickle, 2019). A recent student completed in the United Kingdom by Legg and Tickle (2019) identified three common needs of parent’s professionals need to take into consideration as they navigate the process of making sense of their child in the context of a diagnosis:
 
1. Emotional needs
Consideration should be taken of the parent’s emotional needs! Do parents need emotional support for themselves to manage any distress, grief or fear? Are they having trouble in trying to make sense of their child? If our parents are overwhelmed with sadness, anxiety or pain then they cannot be the best parent they can be and should be taken care of.

2. Informational needs

Clear, accurate, relevant and timely information can aide a parent as they develop a deeper understanding of their child’s newly diagnosed condition. It removes some of the ‘mystery’ revolving around ASD and empowers parents to make accurate, informed and relevant decisions.

3. Relational needs

A warm, empathic and connected relationship with a diagnosing clinician can make the world of difference for our parents. It is through this relationship that difficult conversations can be had, support can be sought, and answers can be found. Without it, the quality of care, communication and parent autonomy is lost.
Parental   experiences   varied,   but   the   needs   identified   above   were   common   across   the assessment and post-diagnosis process. Special care should be taken of our children, but also our parents and carers, to ensure that our parents reconcile and adjust to an ASD diagnosis can be the best parents that they can be.

References
Boss, P. (2004). Ambiguous loss research, theory, and practice: Reflections after  9/11. Journal of Marriage and Family, 66(3), 551-566.
Carpenter, B. (2005). Early childhood intervention: possibilities and prospects for professionals, families and children. British Journal of Special Education, 32(4). 176-183.
https://doi.org/10.1111/j.1467-8578.2005.00394.x
Griffith, G. M., Walker-Jones, E., Fitzpatrick, H., Goodson, L., Pickering, N., Wimpory, D., ... & Hastings, R. P. (2013). Receiving an assessment and a potential diagnosis on the autism spectrum: A thematic content analysis of parental experiences. Good Autism Practice (GAP), 14(2), 59-68.
Herlihy, L., Knoch, K., Vibert, B., & Fein, D. (2015). Parents’ first concerns about toddlers with autism spectrum disorder: Effect of sibling status. Autism, 19(1), 20-28.
Hinton, C. E., & Wolpert, M. (1998). Why is ADHD such a compelling story? Clinical Child Psychology and Psychiatry, 3(2), 315-317. https://doi.org/10.1177/1359104598032013
Midence, K., & O’neill, M. (1999). The experience of parents in the diagnosis of autism: A pilot study. Autism, 3(3), 273-285.
Solnit, A., & Stark, M. (1961) Mourning and the Birth of a Defective Child. The Psychoanalytic Study of the Child, 16(1). 523 – 537.
https://doi.or/10.1080/00797308.1961.11823222
Scheff, T. (1974). The labelling theory of mental illness. American sociological review, 39(3). 444-452. https://doi.org/10.2307/2094300