New Autism Research Highlights How Parents Navigate Their Child’s Autism DiagnosisSee why early acceptance and understanding sets a positive tone for the whole family

Autism research highlights image collage

According to the CDC, the autism prevalence rate is increasing among children in the United States. Based on 2020 data, the CDC estimates that in 2023 1 in 36 eight-year-olds were identified with autism spectrum disorder (ASD), compared to 1 in 44 in 2020. ASD prevalence has steadily increased over the past two decades, resulting in more and more families experiencing a loved one being diagnosed.

New research from Catalight sheds light on how parents experience their child’s initial autism diagnosis and identifies opportunities for marriage and family therapists (MFTs) to support these caregivers in cultivating greater family wellbeing. The exploratory study of 75 clients conducted by researchers at Catalight was published in The Family Journal in February 2023.

“Effective autism treatments, in addition to focusing on the autistic child themselves, must support the family to create the optimal environment in which the child can thrive,” said Michelle Befi, MA, LMFT, AAMFT, Senior Vice President of Sustainable Program Design at Catalight and lead author of the study. “Given that having a child with autism has been shown to increase the risk of parental stress, it is important to understand the needs of the family alongside those of the child.”

A diagnosis of autism can be stressful for families, upending life as the family knows it. The study found acceptance and understanding of an autism diagnosis at the onset can set the tone for a more positive and supportive outlook for the whole family. Incorporating therapy for parents and families of the client may be pivotal to creating a healthy environment for the treatment journey ahead.

Catalight researchers analyzed common themes presented in parents’ responses to the question: “What is your current understanding of your child’s diagnosis?” The study found a strong correlation between understanding and acceptance. Parents and families with a solid grasp of what the diagnosis meant were more likely to embrace their child’s autism.

“The positive relationship we found between acceptance and understanding may also explain the high levels of acceptance among the parents in our study,” said Befi. “Most parents demonstrated an understanding of ASD in their responses.”

The study found parents who embraced the diagnosis were more likely to use phrases like “my child’s autism” rather than “the autism diagnosis the doctor gave them.” Parents with an accepting outlook demonstrated more active coping strategies, meaning the parent is engaging in learning more about ASD, connecting with peers or professionals as resources or serving as an advocate for their child to receive support.

Another consistent finding: parents of younger children tended to be more positive and optimistic. This could be attributed to the sense of relief they felt in finally having an explanation for what they were noticing about their child and being able to envision a path forward.

Parents of older children, conversely, were more likely to feel guilt and shame for not securing a diagnosis earlier and were worried they had “missed the window” for effective treatment. This negative outlook can lead parents to avoid engaging in their child’s treatment and contributing to their progress. These parents were also less likely to seek community support that could aid in their understanding of the disorder.

“We urge clinicians to never make assumptions about where parents are in their understanding and acceptance journeys,” said Doreen Samelson, EdD, MSCP, and Chief Clinical Officer, Catalight. “Families of older children may benefit from additional support to better understand their child’s ASD as they navigate the treatment journey.”

Marriage and family therapists are equipped with specific training and expertise to help identify difficulties in the diagnostic experience, help families improve their wellbeing through building resilience and create a healthy environment for the treatment journey ahead in the context of individual, couples or family therapy.

Befi and her colleagues hope by better understanding what is happening for families when they begin treatment, they can help clinicians improve family wellbeing according to their unique needs and help foster an environment at home conducive to acceptance and learning.

About the Study 

The paper “Parents’ Experience of the Diagnosis of Autism Spectrum Disorder: Opportunities for Marriage and Family Therapists” was published in The Family Journal on February 21, 2023. The authors are Michelle Befi, MA, LMFT, AAMFT, Clinical Fellow SVP, Sustainable Program Design; Vincent Bemmel, PhD; Director of Technology and Innovation; and Doreen Samelson, EdD, MSCP, Chief Clinical Officer; Lindsey Sneed, PhD, BCBA-D, Vice President, Clinical Excellence; and Jennifer Hoobing, Senior Business Consultant – all affiliated with the Catalight Research Institute.