First Steps: Navigating the Journey After Your Child's Autism Diagnosis

By Anna Medina-Gilliam, Extension Assistant Professor

The initial reaction to an autism diagnosis can bring many emotions. Some parents have reported feeling “grief and uncertainty…as they realize the unending nature of this disability” (Lutz et al., 2012, p. 206). In a study of parents of children with autism, Lutz et al. (2012) identified four coping strategies commonly used by mothers after learning of their child’s autism diagnosis. Based on those findings, here are four strategies you can use to respond to your child’s autism diagnosis.

1. Seek Some Answers

Take time to research and learn more about autism and the resources that are local to you. Learn how you can be an advocate for your child. You know your child’s strengths, challenges, and interests, and you can use that knowledge as a strength as you interact with other professionals (Morin, 2024).

2. Support, Socialization, and Spirituality

Putting feelings into words, or labeling your feelings, is a way of calming the brain and taking it out of the fight-or-flight mode (Lieberman, 2007). Find people you can trust and talk about what you and your family are experiencing. Normalize the conversation about autism.

3. Appreciate Life

Autism can take up a lot of your time and attention and can impact many aspects of life. Take some time to appreciate the little things, even the mundane things. Expressing gratitude has been proven to decrease stress and anxiety (Toprak, 2023).

4. Revise Dreams and Future Planning

One mother reported that she has accepted the limits that autism has had on her son and that “her goals for him (now) are to be happy, safe, and functional” (Lutz, 2021, p. 211). Approach your child and their future with love, acceptance, and adaptability.

It has been said, “if you know one child with autism, then you know one child with autism.” Your child is unique in their own way. Receiving a diagnosis of autism can be overwhelming but know that your child is still your own beautiful child. Rather than trying to bend your child so they’ll fit into your world, first change yourself to try and understand their world. The study reported that, “(parents) coped through ongoing adaptation to the needs of the child or adult with autism and the family” (Lutz, 2021, p. 208). There is not one solution for all the needs of your family, but through continued adaptation and love, you will make it.

Additional Resources

A-Z Providers & Services (autismcouncilofutah.org)

Autism Across The Lifespan (theautismlifespan.com)

Autism Evaluations 2 11 2024 (utah.gov)

Sibling Support Project

References

Heidi R. Lutz PhD, et al. Coping with Autism: A Journey toward Adaptation. Journal of Pediatric Nursing, W.B. Saunders, 24 June 2011, www.sciencedirect.com/science/article/pii/S0882596311001916?fr=RR-2&ref=pdf_download&rr=87fbd78f1d3a2b53.

Lieberman MD, Eisenberger NI, Crockett MJ, Tom SM, Pfeifer JH, Way BM. Putting feelings into words: affect labeling disrupts amygdala      activity in response to affective stimuli. Psychological Science, 2007 May;18(5):421-8. doi: 10.1111/j.1467-9280.2007.01916.x. PMID:17576282.

Lutz, H. R., Patterson, B. J., & Klein, J. (2012). Coping with autism: A journey toward adaptation. Journal of Pediatric Nursing, 27(3), 206-213.

Morin, Amanda. 8 Steps to Advocating for Your Child at School. Understood, www.understood.org/en/articles/parent-advocacy-steps. Accessed 6 May 2024.

Toprak, B., Sarı, T. The effects of a 2-week gratitude journaling intervention to reduce parental stress and enhance well-being: a pilot study among preschool parents. Discovering Psychology 3, 38 (2023). https://doi.org/10.1007/s44202-023-00099-x