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  • Author
    Patricia Mathelier
  • Co-author

    S. Bazargan-Hejazi, PhD

  • Title

    Identifying the Gaps in Autism Services amongst Parents with Autistic Children

  • Abstract

    Background: In 2018, the CDC estimated the prevalence of Autism Spectrum Disorders (ASD) as 1 in 59 children (1.7%) in the US, and this is a 15% increase since 2010. For children with ASD, concerns about their development usually arise around age 12-24 months, and are detected by their parents or primary care provider. Unfortunately, the path to an autism diagnosis is a long and frustrating process for the entire family, and children oven wait upwards of 6-12+ months for a confirmed diagnosis followed by another waiting period to start receiving services. Families of children with autism often use various means of trying to find accurate information and support through various online channels, such as forums, social media pages, blogs, YouTube videos and more, with limited positive results.

    Objective: The purpose of this study is to test the acceptability by parents and their willingness to use and engage with a digital mobile application as they navigate the process of receiving an ASD diagnosis for their child and setting up subsequent therapy and follow-up. This digital mobile application specifically focuses on ASD education for parents, facilitated communication between families and providers, and receiving parental social and emotional support from other ASD families and qualified health professionals.

    Methods: Parents, caregivers, and healthcare providers of children with autism were identified through targeted social media ads, word of mouth, and provider referrals to participate in an hour long semi-structured interview, an online survey, or both.

    Results: 100% of parents surveyed & interviewed report spending at least 20 minutes/ day googling information on autism and 33% of parents spend over an hour/ day googling information about autism. Parents report feeling alone and lost when researching autism on their own, especially when it comes to provider/ insurance navigation and finding parenting modification tools for challenging behavior. 100% of parents report that they would use a mobile application daily to help better understand ASD through video modules, to communicate with providers, to receive a personalized plan for navigating diagnoses and accessing services, and to connect with other families going through a similar experience with ASD.

    Conclusions: Although children with ASD are protected by laws protecting children with disabilities, the reality is that many children often receive delayed or inadequate services due to various barriers including socioeconomic barriers. A lack of emotional/ mental support for parents of children with autism in combination with a lack of education and access to autism resources can lead to delayed ASD diagnosis and delayed early intervention services, thus resulting in worsening outcomes for the child. The top three issues that parents of children with autism reported having are 1) missing feelings of normalcy, 2) time constraints, and 3) not seeing progress. Additionally, a big challenge for parents is lack of easily accessible resources and information, and not a lack of motivation to seek information (i.e. due to parents working multiple jobs, high prices of therapy, balancing parenting of non-ASD siblings), which is often assumed by lower income and minority families. By creating a digital solution for these parents, they will feel better supported and also have better education on autism and related treatment and therapies. In turn, this can lead to earlier age at diagnosis and faster access to services, which can result in better childhood outcomes.


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