Every family has their own personal journey towards an autism diagnosis for their child. Whether it brings the confirmation of what may have been suspected or the news of something completely unexpected, the diagnosis of autism spectrum disorder can have a significant impact on a family. Like the disorder itself, the response to the diagnosis can also fall along a spectrum. Worry, sadness, fear, helplessness, anger, validation, and relief are just a few among the range of reactions parents may experience. The effects of having a child diagnosed with autism spectrum disorder have been found to be complex and wide-ranging (Karst & Van Hecke, 2012). As might be expected, this moment quickly becomes a pivotal point in the life of a family and navigating next steps will have lasting effects.
Take Time
A first step for a parent should be to take time to adjust to the diagnosis. The intention of the formal assessment, results, and diagnostic feedback is to provide children and their parents with as positive an interaction as possible but are experienced relative to each individual family. The diagnostic process as a whole can be an overwhelming experience. There is much to process and consider for you, your child, and your family before being ready to make an emotional shift. For many parents, concern and worry may have been experienced long before the actual diagnosis and sit in a well-established place among one’s emotional landscape. Be patient with yourself and take the time that you need to best process information critically and make good, informed decisions going forward. With the realization that, with the diagnosis, you may now better understand your child, you can take a next step to learning more about their unique profile and how you can best support them.
Learn
Learn about autism spectrum disorder, speak to your pediatrician and other professionals in the field, explore information from reliable sources, know your rights, and learn about the range of services that are available to your child and family. Engaging your local early intervention system for a child under the age of three or your local school system for children three years of age and older would be the best next step towards accessing the services that they need. The importance of an early diagnosis of autism spectrum disorder and subsequent access to effective intervention is well established in the literature (Elder et al., 2017; Volkmar, 2014). By accessing both, you have already taken vital steps to help assure that your child gets what they need in order to make developmental gains.
Advocate
Be a voice for your child and your family. While navigating through what can be a complex system of service delivery and treatment, determine what will be helpful for your child and best suit their needs at this point in time. Children on the autism spectrum have both strengths and areas in need of support with a tendency to progress across and within developmental domains at different rates. Each child will present with their own distinctive profile. As a result, the course of treatment you choose for your child should be uniquely tailored and individualized. The goal of early intervention for children on the autism spectrum should be to increase skills in those developmental areas most significantly impacted such as communication and socialization while lessening the impact of challenging behaviors (Will et al., 2018). As your child’s best advocate, you should determine what this multi-modal approach will look like for your family. From the intervention setting to the educational/therapeutic modality to the individual providers, the goals, and priorities you have defined for your child should be reflected throughout.
Create a Network of Support
While taking care of your child, it is also important that you take care of yourself. Research has shown that, when compared to those of neurotypical children, parents of children with autism spectrum disorder experience higher levels of parenting stress (Duarte et al., 2005; Hoffman et al., 2009). Identifying the resources, people, and activities that work best for you will be vital to relieving this stress (Elder et al., 2017). Seeking informal social support through friends, family, and your community can help to process the impact of the initial diagnosis and how you move through all that will come next. Consider talking about your experience with other families who share a similar parenting journey in the form of a support group or on-line community. These more formal forms of support can offer encouragement, validation, comfort, and a social connection now that your child is newly diagnosed or at any point in time. Your child’s providers are there for you as well as your child. Related service providers and clinicians are available to offer you and your family the supports, resources, and coping strategies that will not only help your child to progress, but for you to feel empowered and better able to navigate this critical period. The parent-professional relationship in early intervention is an important partnership for all involved. Should you need additional support, seek the help of a qualified professional who is familiar with parenting a child with autism.
Working through the stressors and emotions related to this unique journey in support of your own emotional health and growth will allow you and your child to flourish and thrive.
Ann-Marie Sabrsula, MS, is Director of The Children’s School for Early Development at The Arc Westchester.
References
Duarte, C. S., Bordin, I. A., Yazigi, L., & Mooney, J. (2005). Factors associated with stress in mothers of children with autism. Autism, 9(4), 416-427.
Elder, J. H., Kreider, C. M., Brasher, S. N., & Ansell, M. (2017). Clinical impact of early diagnosis of autism on the prognosis and parent–child relationships. Psychology research and behavior management, 283-292.
Hoffman, C. D., Sweeney, D. P., Hodge, D., Lopez-Wagner, M. C., & Looney, L. (2009). Parenting stress and closeness: Mothers of typically developing children and mothers of children with autism. Focus on autism and other developmental disabilities, 24(3), 178-187.
Karst, J. S., & Van Hecke, A. V. (2012). Parent and family impact of autism spectrum disorders: A review and proposed model for intervention evaluation. Clinical child and family psychology review, 15, 247-277.
Volkmar, F. R. (2014). The importance of early intervention. Journal of autism and developmental disorders, 44, 2979-2980.
Will, M. N., Currans, K., Smith, J., Weber, S., Duncan, A., Burton, J., Kroeger-Geoppinger, K., Miller, V., Stone, M., Mays, L., Luebrecht, A., Heeman, A., Erickson, C., & Anixt, J. (2018). Evidenced-based interventions for children with autism spectrum disorder. Current Problems in Pediatric and Adolescent Health Care, 48(10), 234-249.
