From Childhood to Independence: A Needs Assessment for mHealth Interventions for Women with Autism and Their Caregivers

Abstract

The transition to adulthood is a pivotal life stage for women diagnosed with Autism Spectrum Disorder (ASD) that is marked by challenges which include, but are not limited to, the transition from pediatric to adult healthcare, securing employment and higher education, and navigating romantic relationships and sexuality. Caregivers also play a very important role during this period, but some suffer from burnout, stress, and a lack of adequate resources to provide proper care. There is a lack of existing interventions and research focused on young female adults with ASD and their caregivers. To address this disparity and provide effective support, creating tailored interventions for these specific populations is essential. In this work, we investigated the needs of young women with ASD and their caregivers through semi-structured interviews with eleven participants, three of which were subject matter experts and eight were caregivers. The thematic analysis revealed four key barriers faced by women with ASD and their caregivers: (1) transitioning to adult healthcare, (2) navigating romantic relationships and sexuality, (3) lack of guidance on employment, higher education, and independent living options, and (4) burnout and well-being among caregivers. The findings from this needs assessment aim to guide the design of a targeted mHealth intervention for women with ASD and their caregivers.

Introduction

ASD is a “neurological and developmental disorder that affects how people interact with others, communicate, learn, and behave,” as defined by the National Institute of Mental Health (NIMH, 2025). Anyone can be diagnosed with ASD, regardless of gender, race, ethnicity, or economic background (NIMH, n.d.). In the United States, approximately 1 in 36 children and 1 in 45 adults have been diagnosed with ASD (Dietz et al., 2020). Despite the large proportion of individuals with ASD reaching adulthood, less than 1% (52 out of 23,000) of peer-reviewed studies on ASD focused on adulthood interventions (Shattuck et al., 2020). It is especially important to consider the needs of the adult population because children with ASD transition to adulthood.

Adult women with ASD face a “triple-jeopardy” in which they struggle with gender-, age-, and disability-related challenges. As young girls with ASD transition to becoming adult women, they face challenges layered by their identities. Without effective, data-driven interventions, female adults with ASD may be overly dependent on their caregivers. This cycle of dependency may be detrimental to both caregivers and care recipients in achieving positive life outcomes. Addressing these disparities requires understanding how these gendered differences manifest.

Firstly, most ASD research focuses on men. Historically, the criteria for diagnosing ASD was based on the symptoms that men present, and as a consequence, many women with ASD tend to have their symptoms go unnoticed, receiving delayed or misdiagnoses due to varying presentations of their ASD symptoms (Begeer et al., 2013; Lai et al., 2011; Rutherford et al., 2016; Tint and Weiss, 2017). For example, women with ASD are more likely to mask or camouflage their symptoms to adapt to social situations (Baldwin and Costley, 2016; Bargiela et al., 2016; Chellew et al., 2024; Dean et al., 2016; Lai et al., 2016; Rynkiewicz et al., 2016; Tierney et al., 2016; Tint and Weiss, 2017). Due to the misconception of how symptoms for women with ASD should be presented, there is a lack of adequate resources to provide proper care.

Secondly, another prevalent challenge is the “service cliff.” Specifically, due to eligibility criteria that may exclude them based on age, women diagnosed with ASD in adulthood may age out of special services and insurance coverage that they would have benefited from as children, thus forcing them or their caregivers to pay for these services out of pocket. This service cliff occurs because many services that are available to children with ASD, which are typically covered by insurance or funded by educational institutions, do not extend into adulthood. Without a strong basis and understanding of resources that benefit women with ASD, transitioning to adulthood can prove to be challenging.

Thirdly, women with ASD experience similar disability-related challenges as men, impacting their access to ASD resources, securing employment, pursuing higher education, and maintaining mental well-being (Taylor et al., 2015; Tint and Weiss, 2017). For women who work in male-dominated fields, they may face a set of compounded challenges. Due to their gender, they may experience feelings of isolation, and adding ASD to the equation can further increase these negative feelings.

The aforementioned challenges highlight the importance of identifying specific unmet needs of young women with ASD in order to develop tailored interventions that support the unique needs of women with ASD. Yet, women with ASD still remain underserved in research. To ensure effective support, interventions must be designed through careful consideration of this underrepresented population’s distinct needs, rather than creating a one-size-fits-all solution. This study seeks to:

1. To assess the need for a mHealth intervention tailored to young women with ASD and their caregivers.

2. To identify key features within a mHealth intervention that would effectively support the transition to adulthood and promote independence.

Method

Participants

To ensure a comprehensive understanding of differences in needs and challenges faced by men and women with ASD, interviews were conducted with both subject matter experts (SMEs) and caregivers of individuals with ASD.

Three SMEs were recruited from the Department of Psychiatry and Behavioral Science at UTHealth Houston. These individuals were selected due to their extensive professional experience working with both male and female adults diagnosed with ASD. Their professional backgrounds consisted of licensed psychologists and community health workers.

Eight caregivers were recruited from online platforms (i.e., LinkedIn, ASD support pages) and through email lists associated with a local focus group for young adults with ASD. Interested participants were asked to fill out a screening survey to determine their eligibility. To be eligible for the study, participants needed to (1) provide active care for an individual who is at least 18 years of age and has been diagnosed with ASD, or have previously cared for such an individual for a minimum of 2 weeks; (2) be of 18 years of age or older; (3) and speak fluent English. Five of the eight were caregivers of adult women with ASD, and three of them were caregivers of males with ASD.

Design

Semi-structured interviews were conducted with SMEs and caregivers. The investigators designed different sets of questions for the two groups of participants.

For the SMEs, the four main questions included (1) What do you think are some of the most pressing needs or challenges caregivers face when supporting adults with ASD, (2) How can a mobile health app address those challenges, (3) From your experience, have you observed any differences between caring for a male versus a female adult with ASD, and (4) Do you think there are particular features in the app that could help caregivers feel more supported?

For the caregivers, the primary questions asked were: (1) How are you related to the person who was diagnosed with autism spectrum disorder, (2) How much time do you devote each day to take care of that person, (3) What are the main tasks every day for caregiving, (4) What are some challenges in caring for that person on a day-to-day basis, (5) What kinds of digital applications or tools do you wish you had that could help support you with this/ese challenges, (6) What are the top three most important features for the app to have, (7) Is there any difficulty in scheduling daily activities for that person, and (8) How do you cope with fatigue and burnout when or if they arise?

Data Collection

The semi-structured interviews were conducted individually with each eligible participant. The interview was a single session lasting approximately 30 min. Each session had two interviewers present. One interviewer facilitated the discussion by asking the predefined questions from the discussion guide, while the other took detailed notes capturing the participants’ verbal responses.

Data Analysis

The data were transcribed, systematically coded, and categorized into themes using the thematic analysis framework developed by Braun and Clarke (2006) to identify recurring patterns and categorize themes.

Results

A recurring theme that was brought up in conversations with SMEs and caregivers was the unique challenges that young adult women with ASD face, especially those between the ages of 18 to 25 who are transitioning into adulthood. The thematic analysis revealed four key themes related to unmet needs and their impact on well-being: (1) transitioning to adult healthcare, (2) navigating romantic relationships and sexuality, (3) lack of guidance on employment, higher education, and independent living options, and (4) burnout and wellbeing among caregivers. These results are further described in the following sections.

Transitioning to Adult Healthcare

Young female adults with ASD often need help with managing menstruation, selecting the appropriate bras to wear, gaining access to birth control and other reproductive health services, and transitioning from pediatric to adult healthcare (e.g., getting regular breast cancer screenings, navigating gynecological care). These are areas where they may lack awareness or guidance, and are unique to the female experience.

Navigating Romantic Relationships and Sexuality

Navigating romantic relationships and sexuality was another common theme that came up during the conversations with SMEs. These are areas that are often overlooked by caregivers and educators, with SMEs frequently reporting the need for more sex education to empower individuals with ASD and prevent them from exploitation in romantic relationships. Moreover, questions or concerns about gender identity and fluidity are often raised among young adults with ASD. As highlighted by these excerpts:

“Young adults want to have relationships. They’re not asexual.”

“Gender fluidity and identity conversations tend to occur more frequently within the autism community.”

The caregivers also play a pivotal role in educating their care recipients about romantic relationships. As one SME stated:

“Caregivers often have to navigate conversations about personal boundaries in relationships and help them understand appropriate behavior in romantic contexts.”

Lack of Guidance on Employment, Higher Education, and Independent Living Options

The SMEs frequently reported the challenges that adults with ASD face as they transition from high school to adulthood. Specifically, there is a lack of preparation by the schools to prepare young adults with ASD in areas such as obtaining employment, pursuing post-secondary education, independent living options, and understanding legal or financial responsibilities once they turn 18. Caregivers face the brunt of this challenge too, as inadequate guidance and resources during this transition can result in caregivers struggling to provide effective care.

Burnout and Wellbeing Among Caregivers

As individuals with ASD navigate the complexities of transitioning into adulthood, the responsibilities of caring for daily tasks are placed on the shoulders of their caregivers. There are three main tasks that caregivers have to perform every day to take care of their care recipients. First, the caregivers handle most household chores, including cooking, cleaning, doing groceries, and taking care of pets. Second, they help the care receivers develop basic living habits such as making food, bathing, and doing laundry regularly. Third, the caregivers often take on the responsibility of overseeing the treatment process, including managing medications, scheduling doctors’ appointments, and providing emotional support when needed.

Additionally, these efforts are further complicated by resistance to change and inflexibility, often observed in their care recipients. This resistance may stem from overconfidence in their current daily task methods, a lack of understanding of the importance of the right approaches, and low motivation to adopt new behaviors. Some direct quotes from the caregiver interviews are included below:

“It’s hard to change the routine and for her to adopt new steps.”

“Daily household chores without a lot of prompting. She won’t do it until she’s angry. I don’t want to get mad at her, and it shouldn’t take until it gets to that point.”

“Constant hygiene things, but I must be mindful of how I communicate this to her. For example, stacking washcloths in the shower that’s wet. I have to explain how moisture is being collected.”

“Doesn’t know how long these things take, I have to tell her how long each step takes.”

The heavy workload, the magnitude of the responsibilities placed on the caregivers, and the resistance from the individual they are taking care of frequently lead to stress, burnout, and depressive moods, as highlighted by these excerpts from the interviews:

“The truth is, I’m exhausted. It’s exhausting.”

“[I] should probably be in therapy, but don’t have time or money.”

“I have no time to be away from the care.”

“I have not had independence for 21 years because I have to be here to take care of her.”

Overall, caregivers consistently reported experiencing fatigue and stress due to a lack of support and unmet needs. The constant responsibility leaves them with minimal time to rest and recharge, resulting in a lack of autonomy in their daily lives.

Discussion and Conclusion

This qualitative study highlights the unique challenges faced by women with ASD and their caregivers, as well as strategies for addressing these unmet needs. Overall, we identified significant barriers in the transition to adulthood for women with ASD, including difficulty in accessing healthcare services, navigating relationships and sexuality, maintaining employment, attending post-secondary education, and living independently. In addition, caregivers of adult women with ASD frequently reported burnout and fatigue stemming from their caregiving responsibilities and lack of autonomy in their daily lives.

Combining the insights from the SMEs and caregivers, we highlight the potential benefits of a mHealth solution that addresses gender-specific challenges for young adult women with ASD due to their distinct challenges and needs. As a recommendation, the solution should prioritize the following key functions:

1. Goal-setting and motivation support: The application should provide step-by-step guidance in fulfilling a task. Goal breakdown and progress-tracking features should use incentives to motivate users to adhere to and complete these goals.

2. Support network for caregivers: A reliable and empathetic support network is crucial for caregivers’ mental health. Therefore, it is recommended that the mHealth solution offers an online community where caregivers can share their challenges, receive support during periods of exhaustion, and maintain their well-being.

3. Promoting independence in care recipients: Caregivers aim to help their care recipients thrive independently. Of particular importance is reducing the burden on caregivers in repeatedly teaching their care recipients the same skills. As such, the mHealth solution should support this by educating care recipients on essential tasks, minimizing caregivers’ load. This feature should offer research-backed teaching methods and provide reliable and accessible information on important topics like sexual education.

4. 24/7 support during crisis episodes: Because individuals with ASD may experience outbursts or crises, a 24/7 support system managed by licensed professionals is recommended to help them manage these episodes without solely relying on the support from their caregivers. This would allow caregivers to rest and recharge, mitigating the risk of burnout. Moreover, caregivers may also benefit from a 24/7 support system on their dashboard. This feature would give them on-demand, crucial support when caregiver intervention is necessary. If a caregiver is experiencing an urgent situation, this support system could provide on-demand advice to manage their care recipient’s episode or connect them with emergency services.

The results underscore the pressing need for targeted services to provide better support for these understudied populations. The authors advocate for more intentional, tailored research focused on the unique experiences of women with ASD to ensure that caregivers are equipped with the knowledge and appropriate resources to provide effective support.

One limitation of this study is that we did not interview women with ASD themselves due to logistical considerations. Despite this limitation, our plans for the future will include the development of a mHealth intervention that addresses the needs highlighted in this study and usability testing sessions with women with ASD, their caregivers, and SMEs.

Overall, this study demonstrated the need for tailored interventions that acknowledge the differing support needs of women with ASD and their caregivers. By addressing these disparities, these findings aim to inform the design of a targeted mHealth intervention that can improve outcomes for women with ASD and their caregivers.