Acceptance of Autism in the Family

Article: Naicker, V. V., Bury, S. M., and Hedley, D. (2023). Factors associated with parental resolution of a child's autism diagnosis: a systematic review. Front. Psych. 13:1079371. doi: 10.3389/fpsyt.2022.1079371

Why is this research important?

We know that parental resolution or acceptance of an autism diagnosis for their child contributes to the well-being of the child, and of the parent-child relationships. This study sought to discover what factors support or inhibit parental acceptance of their child’s autism.

What did they do?

The researchers completed a systematic review of peer-reviewed studies from 2017 to 2022. Fourteen papers with 592 participants were included in the research, of these participants 536 were mothers and 56 were fathers.

What did they find?

Six factors were found to be associated with acceptance of their child as autistic.

1. Autism characteristics.

Autism characteristics had a substantial effect on acceptance by mothers of the diagnosis. The more pronounced the characteristics, and those with higher support needs, the more parental acceptance.

2. Religion, belief, culture.

Religion was found to be associated with greater acceptance of autism. Cultures that associated autism with more negative stigma, including Arab and Latino participants, found accepting autism more difficult. Lack of awareness within the community also was associated with difficulties excepting autism.

3. Knowledge and uncertainty.

A major factor affecting parental resolution of autism for their child was lack of knowledge and uncertainty. Specifically, uncertainty regarding the future and doubts regarding the final diagnosis contributed to more difficulty accepting the diagnosis.

The degree of autism knowledge differed by culture. Both Latino and Caucasian groups were under-informed compared to other groups. Greater knowledge about autism was associated with greater levels of acceptance.

Parental self-education about autism was found to be a protective factor. One study found that the diagnosis allowed parents to feel empowered as they finally understood their child.

4. Negative emotions.

A common theme, occurring in 71% of the studies, was negative feelings, specifically of grief, denial, shame and blame. These primarily occurred during the initial stages of the diagnosis, and, for many parents, resolved over time.

Those parents who experienced greater acceptance and resolution of the diagnosis had lower levels of perceived stress and lower depressive symptoms. They were more emotionally available, had better perceptions of their social relationships, and overall experienced better mental and physical health overtime compared to mothers who were unresolved.

5. Positive emotions.

Relief, as a positive emotion, was identified as a factor that allowed parents to reach adjustment more quickly. The adjustment period was described to be one of redefining their goals and expectations of their child, as well as adjusting their perception of their relationship with their child. Parents who received social support and had a higher perceived sense of competence were more likely to be accepting of their child’s autism diagnosis.

6. Support.

Over several studies, family support, connection between the mother and the child, and community support aided the acceptance process. Support was associated with both parenting involvement in treatment and increased knowledge about autism. Family support and therapy were helpful in assisting parents to progress in their process of accepting their child’s autism. Out of all cultures, Caucasian families tended to feel more supported.

Greater resolution was associated with?Attunement and insightfulness.

Attunement, that is, the parent’s ability to understand the motives behind their child’s behaviour, was associated with more acceptance by parents and greater responsiveness, in an appropriate and helpful way, to the child’s needs. Being nonaccepting of their child’s autism was associated with less attunement and insightfulness.

Implications for Families and Clinicians

Families:

The best outcomes for the autistic child are associated with acceptance of autism in the family. Acceptance is a process that involves time and is facilitated by access to knowledge about autism and support from family, friends, professionals and the community. Self-educating about autism is helpful. Internalised negative stigma about autism is unhelpful, so actively fighting these old beliefs is important.

Clinicians:

A lot can be achieved by assisting families by clinicians during the diagnostic assessment process. Involving both parents, and extended family, if possible, to frame the diagnosis in a positive way, focussing on strengths and solutions, but also providing knowledge and sources of knowledge about autism to families will be beneficial. Supporting the family through any negative emotions such as grief, denial, shame and blame is important, especially during the initial phases after the diagnosis.

Want to learn more about autism and families?

Friday 15th November 2024 - 9:30am - 4:00pm Brisbane Time

This course aims to help participants understand how autism may impact family dynamics and develop strategies for addressing these. The goal is to ultimately create a neurodiversity-affirming family environment within which all members can thrive. It is a full-day event, fully recorded, and available for 60 days.

https://attwoodandgarnettevents.com/product/webcast-event-autism-in-the-family-15-november-2024/