How well do parents accept their child’s ASD diagnosis

12 Aug

ResearchBlogging.orgHow well do we parents come to accept their child’s diagnosis of autism? If you wonder that, you may be interested in this paper out of Israel:

Resolution of the Diagnosis Among Parents of Children with Autism Spectrum Disorder: Associations with Child and Parent Characteristics

Resolution, or being resolved, is discussed as:

The process of coming to terms with a diagnosis for one’s child, that is, accepting and feeling resolved with respect to it, is a daunting challenge for most parents.

The authors found that 57% of their sample of parents were unresolved to their child’s diagnosis.

According to the paper, there are six subtype classifications that characterize lack of resolution:

Emotionally overwhelmed parents are those who re-experience the emotions they felt the day they received the diagnosis during the interview.

Angrily preoccupied parents are consumed by anger that they cannot let go (e.g., anger at the doctor who delivered the child or at the person who diagnosed him/her).

Neutralizing parents minimize the effect of the experience and their difficult emotions.

Depressed/passive parents seem sad and depressed during the interview and report having no hope for change in the future.

The cognitive distortions subtype describes parents who have distorted the information or feelings available to them about the child and the diagnosis. For example, they will show an unbalanced perception of the child, describing only her/his positive qualities, or will adopt an unrealistic view regarding the
child’s abilities and future.

Disorganized/ confused parents seem confused and incoherent and find it difficult to construct a narrative regarding the experience of receiving the diagnosis.

My guess is that Warrior Moms wouldn’t see themselves as falling into any of those categories. I would further guess that the researchers might not agree with the warrior mothers.

Back to the paper. How are the parents they studied fall into the categories?
Figure 2 (click to enlarge) from the paper shows how the unresolved parents fell into the different categories.

resolved_figure_2

The largest fraction of unresolved mothers were in the “emotionally overwhelmed” category, while fathers were split mostly between “emotionally overwhelmed” and “neutralizing” categories.

A couple of observations I found interesting.

First, naively, I would expect that the ability to “resolve” would be related to how “severe” the child’s autism is. This is not the case:

Our study also replicates past findings regarding the lack of association between maternal resolution and the diagnosed child’s characteristics including gender, chronological age, severity of symptoms, mental age, and daily living skills.

A second observation: I would also naively expect that parents would “resolve” more over time. Not true. By comparing their results to another recent study, the authors conclude that time doesn’t appear to help in achieving resolution:

The maternal resolution rates found in the current study are quite similar to those presented by Oppenheim et al. (2009), even though the mean duration of time since receiving the diagnosis was much longer in the current study (4 years and 4 months) compared to that in the first study (1 year and 10 months). This finding suggests that resolution status is not associated with the duration of time that elapsed since the child was diagnosed, at least for the time range included in the current study.

Parental resolution was not associated with age, gender or time since diagnosis for the child. Neither was it associated with financial impact or impact on siblings. Association was found for mothers in some areas:

Our hypothesis regarding the association between resolution and the impact of raising a child with a disability on the family was confirmed for mothers only. Compared to resolved mothers, unresolved mothers reported a higher perceived negative impact of the diagnosed child on some aspects of family life such as the family’s social life and negative feelings about parenting and marriage.

Full text of the paper is available as pdf.

My guess is that many will greet this study with some variation of “I won’t resolve to autism; I won’t give up”.

Resolution is not giving up. Resolution is accepting the reality of you and your child’s situation. Resolution does not mean one doesn’t fight to improve your own life or that of your child.

The authors conclude the paper with what many would see as an important observation (if not one covered by the study itself):

Rather, within the constraints of the child’s disability, parents may play an important role in shaping their relationships with their child and his/her well-being. Thus, interventions focused on enhancing parental resolution are needed in order to optimize the well-being of all family members.

Milshtein S, Yirmiya N, Oppenheim D, Koren-Karie N, Levi S. (2009). Resolution of the Diagnosis Among Parents of Children with Autism Spectrum Disorder: Associations with Child and Parent Characteristics. Journal of Autism and Developmental Disorders : DOI 10.1007/s10803-009-0837-x

2 Responses to “How well do parents accept their child’s ASD diagnosis”

  1. AutismNewsBeat August 12, 2009 at 19:12 #

    I’m surprised that the study discounts time as a factor in bringing resolution. It seems that after many years of “defeating” autism, and losing over and over, the human response is to let it go. Overall a fascinating paper. Thanks for the explanation.

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