From Caring to Collapsing: A Qualitative Exploration of Parental Burnout in Mothers of Children on the Autism Spectrum
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| Title: | From Caring to Collapsing: A Qualitative Exploration of Parental Burnout in Mothers of Children on the Autism Spectrum |
|---|---|
| Language: | English |
| Authors: | Eline N. Desimpelaere (ORCID |
| Source: | Exceptional Children. 2026 92(4):502-523. |
| Availability: | SAGE Publications. 2455 Teller Road, Thousand Oaks, CA 91320. Tel: 800-818-7243; Tel: 805-499-9774; Fax: 800-583-2665; e-mail: journals@sagepub.com; Web site: https://sagepub.com |
| Peer Reviewed: | Y |
| Page Count: | 22 |
| Publication Date: | 2026 |
| Document Type: | Journal Articles Reports - Research |
| Descriptors: | Burnout, Mothers, Children, Autism Spectrum Disorders, Child Rearing, Stress Variables, Adolescents, Behavior Problems, Parent Role, Social Support Groups, Resilience (Psychology), Coping |
| DOI: | 10.1177/00144029251389391 |
| ISSN: | 0014-4029 2163-5560 |
| Abstract: | Parental burnout (PB)--a condition characterized by intense exhaustion in the parental role, emotional distancing from one's children, feeling fed up with parenting, and contrast with the previous parental self--has gained increasing attention, predominantly among parents of neurotypical children. Research on PB in parents of children with complex care needs, such as children on the autism spectrum, is comparatively limited, despite indications of elevated PB levels in this population. This qualitative study aims to deepen the understanding of PB in mothers raising children on the autism spectrum by (1) examining the imbalance of stressors over resources mothers encounter before PB, (2) identifying the factors that push them over the edge into PB, and (3) exploring their lived experiences of PB. Fifteen mothers of children on the autism spectrum (aged 6 to 16 years) who experienced PB participated in a semi-structured interview. The thematic analysis revealed major stressors, including the child's challenging behaviors, the mother's perceived irreplaceability, the struggle to balance multiple roles, and inadequate social support. Although mothers shifted perspectives and found relief in activities beyond parenting, this proved insufficient to offset their overwhelming stress. This imbalance, compounded by loss of control, feelings of entrapment, and absence of a lifeline, culminated in PB. Interestingly, in the manifestation of PB, emotional distancing was less pronounced, and feeling fed up with parenting was closely tied to feelings of "living loss". This study enhances the understanding of PB in mothers raising children on the autism spectrum and paves the way toward more tailored parent support. |
| Abstractor: | As Provided |
| Entry Date: | 2026 |
| Accession Number: | EJ1508198 |
| Database: | ERIC |
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| FullText | Links: – Type: pdflink Url: https://content.ebscohost.com/cds/retrieve?content=AQICAHj0k_4E0hTGH8RJwT4gCJyBsGNe_WN95AvKlDbXJGqwxwGQ3uWEqafwaWQOG_5PQBe7AAAA4zCB4AYJKoZIhvcNAQcGoIHSMIHPAgEAMIHJBgkqhkiG9w0BBwEwHgYJYIZIAWUDBAEuMBEEDBgH5RnfBbDmn5jatQIBEICBm8wJxAggalgHUztrU6ZFz1X3bm3x1IGv4aLl4uht2FAjBjNb2Q_k-4bpa3rWCjreYMGi7agiYvsoe1Bq62A1kXW2qHAc9YVqhdZ0b4C8Qt6Zyp3E3g1XyJWPp7ljLY4Qcp2PWkImoaRWl1TYfvQkV4963SBX7Z37jLNdiBlHF61gQPL7kk50tP8wtOI5tVdeL-YPmmfUhDW27Oty Text: Availability: 1 Value: <anid>AN0194392926;exc01jul.26;2026Jun10.02:32;v2.2.500</anid> <title id="AN0194392926-1">From Caring to Collapsing: A Qualitative Exploration of Parental Burnout in Mothers of Children on the Autism Spectrum </title> <p>Parental burnout (PB)—a condition characterized by intense exhaustion in the parental role, emotional distancing from one's children, feeling fed up with parenting, and contrast with the previous parental self—has gained increasing attention, predominantly among parents of neurotypical children. Research on PB in parents of children with complex care needs, such as children on the autism spectrum, is comparatively limited, despite indications of elevated PB levels in this population. This qualitative study aims to deepen the understanding of PB in mothers raising children on the autism spectrum by (<reflink idref="bib1" id="ref1">1</reflink>) examining the imbalance of stressors over resources mothers encounter before PB, (<reflink idref="bib2" id="ref2">2</reflink>) identifying the factors that push them over the edge into PB, and (<reflink idref="bib3" id="ref3">3</reflink>) exploring their lived experiences of PB. Fifteen mothers of children on the autism spectrum (aged 6 to 16 years) who experienced PB participated in a semi-structured interview. The thematic analysis revealed major stressors, including the child's challenging behaviors, the mother's perceived irreplaceability, the struggle to balance multiple roles, and inadequate social support. Although mothers shifted perspectives and found relief in activities beyond parenting, this proved insufficient to offset their overwhelming stress. This imbalance, compounded by loss of control, feelings of entrapment, and absence of a lifeline, culminated in PB. Interestingly, in the manifestation of PB, emotional distancing was less pronounced, and feeling fed up with parenting was closely tied to feelings of "living loss". This study enhances the understanding of PB in mothers raising children on the autism spectrum and paves the way toward more tailored parent support.</p> <p>Keywords: parenting autistic children; caregiver burden; parenting stress; parental exhaustion; qualitative research</p> <p>Parental burnout emerges as a response to persistent and overwhelming parenting stress and is predominantly characterized by intense exhaustion within the parental role ([<reflink idref="bib39" id="ref4">39</reflink>]). Although research on this condition has received increasing attention in recent years, most of this attention has been directed toward parents of neurotypical children ([<reflink idref="bib37" id="ref5">37</reflink>]). To date, parents of children with complex care needs have received comparatively limited attention, despite evidence indicating their heightened vulnerability to parental burnout ([<reflink idref="bib19" id="ref6">19</reflink>]; [<reflink idref="bib55" id="ref7">55</reflink>]). Within this group, parents raising children on the autism spectrum appear particularly susceptible to parental burnout compared to both parents of neurotypical children and parents raising children with other complex care needs ([<reflink idref="bib27" id="ref8">27</reflink>]; [<reflink idref="bib28" id="ref9">28</reflink>]; [<reflink idref="bib43" id="ref10">43</reflink>]). Nevertheless, notable variability exists in how these parents manage the stressors associated with caregiving ([<reflink idref="bib30" id="ref11">30</reflink>]) and in their associated risk for parental burnout, underscoring the critical need for research that provides comprehensive and nuanced insights into the development and manifestation of parental burnout. This qualitative study aims to address this gap by conducting interviews with mothers of children on the autism spectrum who (have) experienced parental burnout. The objectives of this study are to (<reflink idref="bib1" id="ref12">1</reflink>) explore, based on mothers' retrospective narratives, the imbalance of stressors over resources that existed prior to the onset of parental burnout; (<reflink idref="bib2" id="ref13">2</reflink>) identify the factors that, according to mothers' reflections, pushed them over the edge of parenting stress into parental burnout; and (<reflink idref="bib3" id="ref14">3</reflink>) delve into their lived experiences of parental burnout.</p> <hd id="AN0194392926-2">Definition, Prevalence, and Development of Parental Burnout</hd> <p>Research in the general parent population has identified four key dimensions of parental burnout ([<reflink idref="bib53" id="ref15">53</reflink>]). First, parents experience profound physical and/or emotional exhaustion. The mere anticipation of the tasks required for their child(ren) leaves them feeling as if they have reached their limits. Second, over time, this exhaustion leads parents to distance themselves emotionally from their child(ren). They function on autopilot and, beyond essential routines, they are no longer able to invest in the relationship with their child(ren). Third, parents feel fed up with parenting. They no longer enjoy being with their child(ren) and feel such a profound lack of fulfillment in parenting that they cannot stand their role as a parent anymore. Fourth, they no longer recognize themselves as the parent they once were and aspired to be ([<reflink idref="bib25" id="ref16">25</reflink>]; [<reflink idref="bib26" id="ref17">26</reflink>]). Together, these dimensions profoundly alter parents' perceptions of both parenting and their child(ren), with research increasingly underscoring the seriousness of this condition. Specifically, recent studies indicate that about 5% of parents worldwide (up to 9% in some Western countries) experience parental burnout ([<reflink idref="bib52" id="ref18">52</reflink>]), and that this condition has severe repercussions for parents' mental health (e.g., suicidal ideations), relationships (e.g., couple conflicts), and parenting (e.g., neglectful and violent behavior toward the child(ren); [<reflink idref="bib38" id="ref19">38</reflink>], [<reflink idref="bib39" id="ref20">39</reflink>]; [<reflink idref="bib57" id="ref21">57</reflink>]).</p> <p>Given these findings, understanding the development of parental burnout is a critical research priority. The predominant framework used in this regard is the "Balance between Risks and Resources" (BR<sups>2</sups>) theory, which posits that parental burnout arises when parents face prolonged periods in which their resources are insufficient to meet the demands (i.e., stressors) of parenting ([<reflink idref="bib40" id="ref22">40</reflink>]). Although the precise mechanisms of this underlying theory remain relatively unexplored ([<reflink idref="bib37" id="ref23">37</reflink>]), previous research has indicated that parental burnout evolves progressively, with parents transitioning from initial exhaustion to full-blown parental burnout over time ([<reflink idref="bib54" id="ref24">54</reflink>]). Nevertheless, a more detailed understanding of this unfolding process is imperative to inform the development of effective prevention strategies. This need is particularly pronounced among high-risk populations, such as parents of children on the autism spectrum, where the identification of the specific stressors that outweigh parents' resources—in alignment with the BR<sups>2</sups> theory—may aid in designing tailored prevention programs.</p> <hd id="AN0194392926-3">Challenges Associated with Parenting a Child on the Autism Spectrum</hd> <p>The adverse impact of caring for a child on the autism spectrum on parental well-being has been extensively documented in the literature ([<reflink idref="bib21" id="ref25">21</reflink>]; [<reflink idref="bib35" id="ref26">35</reflink>]). Beyond the general demands of raising a child with complex care needs (e.g., coordinating professional appointments, adjusting future expectations), these parents are confronted with unique challenges inherent to the autism phenotype. First, the core characteristics of autism—namely, impairments in social communication, restrictive and stereotyped behaviors—have been found to substantially increase the strain on these parents ([<reflink idref="bib2" id="ref27">2</reflink>]; [<reflink idref="bib20" id="ref28">20</reflink>]; [<reflink idref="bib21" id="ref29">21</reflink>]). In addition, these core characteristics often co-occur with challenging behaviors (e.g., temper tantrums, aggression) and physical and mental health issues (e.g., eating problems, hyperactivity, depression) that further complicate parenting ([<reflink idref="bib20" id="ref30">20</reflink>]). These challenging behaviors, along with the child's difficulty to cope with environmental changes and adherence to rigid routines, require continuous parental involvement, limiting parents' ability to engage in leisure activities and contributing to social isolation ([<reflink idref="bib16" id="ref31">16</reflink>]). Having a child on the autism spectrum may also affect the partner relationship, as various studies report that couples find themselves embroiled in disagreements over the appropriate approach to their child, or struggle to find time for activities together ([<reflink idref="bib6" id="ref32">6</reflink>]; [<reflink idref="bib41" id="ref33">41</reflink>]).</p> <p>Second, these parents may also encounter specific emotional and institutional barriers. The process of obtaining an autism diagnosis for the child is often emotionally taxing and time-consuming because behavioral concerns may not emerge until toddlerhood or later, and there are long waiting lists for diagnostic services ([<reflink idref="bib24" id="ref34">24</reflink>]; [<reflink idref="bib36" id="ref35">36</reflink>]). By the time a diagnosis is obtained, parents have often already invested substantial resources and persistence, without feeling supported or understood ([<reflink idref="bib15" id="ref36">15</reflink>]). Even after receiving a diagnosis, many parents experience stigmatization and blame from community members and extended family. Autism is not typically identifiable by physical appearance, leading to a widespread lack of understanding of its symptoms and associated behaviors, further contributing to parents' feelings of isolation ([<reflink idref="bib56" id="ref37">56</reflink>]).</p> <hd id="AN0194392926-4">Parenting Stress, Parental Burnout, and Resilience in Parents of Children on the Autism Spect...</hd> <p>Given that parents of children on the autism spectrum are particularly vulnerable to adverse psychological outcomes, with elevated levels of parenting stress being especially prevalent ([<reflink idref="bib4" id="ref38">4</reflink>]; [<reflink idref="bib21" id="ref39">21</reflink>]; [<reflink idref="bib62" id="ref40">62</reflink>]), research has predominantly focused on identifying factors that exacerbate parenting stress. To date, this line of research is characterized by a growing consensus that the most significant contributors to stress are challenging child behaviors and the core characteristics of autism ([<reflink idref="bib1" id="ref41">1</reflink>]; [<reflink idref="bib35" id="ref42">35</reflink>]). Moreover, various parental characteristics are associated with heightened levels of stress in the context of raising a child on the autism spectrum, with mothers, younger parents, and single parents at particular risk ([<reflink idref="bib20" id="ref43">20</reflink>]; [<reflink idref="bib32" id="ref44">32</reflink>]). Extensive research also associates high levels of stress with more maladaptive functioning in these parents (e.g., feelings of depression and anxiety; [<reflink idref="bib58" id="ref45">58</reflink>]), within their family unit (e.g., lower quality of the emotional climate; [<reflink idref="bib13" id="ref46">13</reflink>]; [<reflink idref="bib23" id="ref47">23</reflink>]), as well as in their children (e.g., more externalizing and internalizing behaviors; [<reflink idref="bib42" id="ref48">42</reflink>]), with evidence suggesting bidirectional relationships.</p> <p>Although parenting stress typically fluctuates over time, emerging evidence indicates that a subset of parents raising children on the autism spectrum endure chronic stress and are consistently pushed beyond their limits. Research on this topic, although still limited, indicates that parents of children on the autism spectrum are more prone to experiencing parental burnout than parents of neurotypically developing children and parents of children with other complex care needs ([<reflink idref="bib27" id="ref49">27</reflink>]; [<reflink idref="bib28" id="ref50">28</reflink>]; [<reflink idref="bib43" id="ref51">43</reflink>]). The factors identified as contributors to parental burnout in this population largely align with risk factors associated with parenting stress. Specifically, challenging child behaviors have been found to relate to all four dimensions of parental burnout ([<reflink idref="bib43" id="ref52">43</reflink>]). Moreover, lower maternal assessments of the child's independent functioning and lower expectations for rehabilitation have been correlated with higher levels of parental burnout ([<reflink idref="bib60" id="ref53">60</reflink>]).</p> <p>In contrast to the extensive literature on parenting stress and the burgeoning field on parental burnout, it is crucial to recognize that raising a child on the autism spectrum can also bring opportunities, including stronger family bonds and personal growth, and that many parents demonstrate resilience in navigating the challenges associated with autism ([<reflink idref="bib5" id="ref54">5</reflink>]; [<reflink idref="bib48" id="ref55">48</reflink>]). To mitigate parenting stress, problem-focused coping strategies, such as seeking instrumental support and adjusting expectations, along with social support, have been widely acknowledged as vital resources ([<reflink idref="bib30" id="ref56">30</reflink>]). For parental burnout, social support has similarly emerged as a protective factor, with the quality of the social network playing a stronger role than the quantity ([<reflink idref="bib3" id="ref57">3</reflink>]; [<reflink idref="bib33" id="ref58">33</reflink>]). Nevertheless, a notable gap remains regarding the understanding of this resource and of potential additional resources in relation to the risk factors for parental burnout within the context of parenting a child on the autism spectrum.</p> <p>To attain a deeper understanding of parental burnout among parents of children on the autism spectrum, an examination of the imbalance between stressors and resources central to the BR<sups>2</sups> theory is needed, alongside an exploration of parents' lived experiences of parental burnout. Although past studies on parental burnout among this population have yielded valuable insights, they were exclusively quantitative in nature. To the best of our knowledge, only one qualitative study has explored the theme of parental burnout among parents of children on the autism spectrum (<emph>N</emph> = 11) in China. This study identified several contributing factors, including autism characteristics, insufficient support, societal discrimination, and the number of children in the family ([<reflink idref="bib49" id="ref59">49</reflink>]). Nonetheless, further qualitative research is warranted, particularly in a European context and considering the unfolding process of parental burnout through the lens of the BR<sups>2</sups> theory ([<reflink idref="bib40" id="ref60">40</reflink>]).</p> <hd id="AN0194392926-5">The Present Study</hd> <p>This study aims to contribute to the literature by providing a qualitative exploration of parental burnout among Dutch-speaking mothers raising children on the autism spectrum, who have been meticulously selected based on their documented experiences of pronounced parental burnout. Moreover, the purpose is to offer detailed insights into the development and manifestation of parental burnout through the application of the BR<sups>2</sups> theory ([<reflink idref="bib40" id="ref61">40</reflink>]). To do justice to parental burnout as a condition that evolves over time, the objectives of this study are threefold: (<reflink idref="bib1" id="ref62">1</reflink>) to examine the imbalance of stressors over resources that existed prior to parental burnout according to mothers' retrospective narratives, (<reflink idref="bib2" id="ref63">2</reflink>) to identify factors that, based on mothers' reflections, elicited parental burnout, and (<reflink idref="bib3" id="ref64">3</reflink>) to delve into mothers' phenomenological experiences during parental burnout.</p> <hd id="AN0194392926-6">Materials and Methods</hd> <p></p> <hd id="AN0194392926-7">Procedure</hd> <p>Participants were recruited through social media announcements, inviting parents with a child aged between 6 and 18 years with an official autism diagnosis and current or past experiences of parental burnout. To provide clarity on the concept of parental burnout, illustrative sentences were included in the announcement (e.g., "Have you ever felt completely worn out by parenting?"). Interested parents were invited to complete an online questionnaire, which served as an initial screening to assess the inclusion criteria and to collect qualitative descriptions of their parental burnout experiences. The questionnaire specifically contained questions asking whether the child had received an official autism diagnosis, in which year the diagnosis was established, and included an open-ended prompt: "Could you briefly describe your experiences of parental burnout?" To avoid potential bias, no predefined criteria regarding the definition of parental burnout were provided. Moreover, by responding to this targeted call, which explicitly addressed parents of children with an autism diagnosis, parents themselves identified autism as a central aspect of their child's identity, even in cases where co-occurring conditions (e.g., ADHD) in the child were present. This recruitment effort resulted in responses from 41 parents, all of whom were mothers. The written descriptions of their parental burnout experiences were systematically screened and ranked according to the degree to which they aligned with the theoretical definition of parental burnout, ranging from strongest to weakest alignment. Data collection began with mothers whose descriptions showed the strongest alignment and continued until data saturation was reached, defined as the point at which no new themes emerged, and the codebook stabilized ([<reflink idref="bib22" id="ref65">22</reflink>]). Ultimately, 15 mothers, whose descriptions reflected at least two of the four key dimensions of parental burnout, were selected for participation. These participants were notified via email and provided with detailed information about the study. Prior to the interviews, mothers were requested to sign an informed consent form and to complete a brief demographic questionnaire.</p> <p>The interviews were conducted using a semi-structured interview schedule. In the first part of the interview, mothers were asked to describe their parenting journey using the metaphor of a river, thereby facilitating reflection and gaining insight into how parental burnout unfolded across time. The river was conceptualized as originating at the birth of the child, prompting mothers to identify bends (i.e., changes), stones (i.e., obstacles), rapids (i.e., successes), driftwood (i.e., personal resources), and constituents of the river wall (i.e., important persons; [<reflink idref="bib46" id="ref66">46</reflink>]). At the end of the first part of the interview, mothers were asked when they felt they had reached their "breaking point", thereby marking the onset of parental burnout. The second part focused on experiences of parental burnout, asking mothers to reflect on how this condition manifested in their feelings, actions, and family relationships. All interviews were conducted between February and April 2022, with eight interviews being conducted by both the first and second authors and seven by the second author only. Two interviews took place in participants' homes, whereas the others were conducted online via MS Teams. All interviews were audio-recorded and subsequently transcribed verbatim. Their duration ranged from 84 to 170 min (<emph>M</emph> = 116 min). Given that this study involved a vulnerable population, a flowchart was developed to deal appropriately with alarming signals from parents (e.g., suicidal thoughts). This procedure received approval from the Institutional Review Board of the host university (2022/006) and adhered to the ethical standards outlined in the Declaration of Helsinki. Throughout this study, we chose to refer to the children with an autism diagnosis as "children on the autism spectrum", aligning with international recommendations ([<reflink idref="bib7" id="ref67">7</reflink>]; [<reflink idref="bib8" id="ref68">8</reflink>]) and linguistic preferences in the Dutch-speaking context ([<reflink idref="bib11" id="ref69">11</reflink>]).</p> <hd id="AN0194392926-8">Participants</hd> <p>A total of 15 mothers participated in this study, all of whom had at least one child on the autism spectrum and reported experiences aligning with the theoretical definition of parental burnout. The ages of the mothers ranged from 36 to 50 years (<emph>M</emph> = 42 years), whereas the ages of their children on the autism spectrum ranged from 6 to 16 years (<emph>M</emph> = 11 years). Fourteen mothers resided in Belgium and one mother resided in the Netherlands. Most mothers had two (<emph>n</emph> = 9) or three (<emph>n</emph> = 4) children living at home. In most families (<emph>n</emph> = 12), one child had received an autism diagnosis. Three families had two children on the autism spectrum. Of the 18 children on the autism spectrum in this study, 14 had additional diagnoses or co-occurring problems. Most families received professional support, such as support at home or support from a psychiatrist or psychologist. Fifteen children lived full-time with their parents, two children stayed in boarding school during the week, and one child lived in residential care. Additional socio-demographic information is presented in Table 1.</p> <p>Table 1. Socio-Demographic Characteristics of the Parents and Their Children on the Autism Spectrum.</p> <p>Graph</p> <p> <ephtml> &lt;table&gt;&lt;colgroup&gt;&lt;col align="char" char="." /&gt;&lt;col align="left" /&gt;&lt;col align="left" /&gt;&lt;col align="left" /&gt;&lt;col align="char" char="." /&gt;&lt;col align="left" /&gt;&lt;col align="char" char="." /&gt;&lt;col align="char" char="." /&gt;&lt;col align="left" /&gt;&lt;col align="left" /&gt;&lt;/colgroup&gt;&lt;thead&gt;&lt;tr&gt;&lt;th align="left" /&gt;&lt;th align="left" colspan="4"&gt;Information of the Parent and Family Structure&lt;/th&gt;&lt;th align="left" colspan="5"&gt;Information of the Children on the Autism Spectrum&lt;/th&gt;&lt;/tr&gt;&lt;tr&gt;&lt;th align="left" /&gt;&lt;th align="left"&gt;Participant (Age)&lt;/th&gt;&lt;th align="left"&gt;Marital Status&lt;/th&gt;&lt;th align="left"&gt;Education Level&lt;/th&gt;&lt;th align="left"&gt;Number of Children&lt;/th&gt;&lt;th align="left"&gt;Gender&lt;/th&gt;&lt;th align="left"&gt;Age&lt;/th&gt;&lt;th align="left"&gt;Age of Diagnosis&lt;/th&gt;&lt;th align="left"&gt;School Situation&lt;/th&gt;&lt;th align="left"&gt;Additional Diagnosis/Problems&lt;/th&gt;&lt;/tr&gt;&lt;/thead&gt;&lt;tbody&gt;&lt;tr&gt;&lt;td&gt;1.&lt;/td&gt;&lt;td&gt;Mother (37)&lt;/td&gt;&lt;td&gt;Divorced&lt;/td&gt;&lt;td&gt;Higher education&lt;/td&gt;&lt;td&gt;1&lt;/td&gt;&lt;td&gt;Boy&lt;/td&gt;&lt;td&gt;12&lt;/td&gt;&lt;td&gt;4&lt;/td&gt;&lt;td&gt;Special education&lt;/td&gt;&lt;td&gt;ADHD, DCD, OCD, learning disorders&lt;/td&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td&gt;2.&lt;/td&gt;&lt;td&gt;Mother (49)&lt;/td&gt;&lt;td&gt;Divorced&lt;/td&gt;&lt;td&gt;Secondary education&lt;/td&gt;&lt;td&gt;3&lt;/td&gt;&lt;td&gt;Girl&lt;/td&gt;&lt;td&gt;12&lt;/td&gt;&lt;td&gt;9&lt;/td&gt;&lt;td&gt;Special education&lt;/td&gt;&lt;td&gt;None&lt;/td&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td rowspan="2"&gt;3.&lt;/td&gt;&lt;td rowspan="2"&gt;Mother (38)&lt;/td&gt;&lt;td rowspan="2"&gt;Married&lt;/td&gt;&lt;td rowspan="2"&gt;Higher education&lt;/td&gt;&lt;td rowspan="2"&gt;3&lt;/td&gt;&lt;td&gt;Boy&lt;/td&gt;&lt;td&gt;9&lt;/td&gt;&lt;td&gt;3&lt;/td&gt;&lt;td&gt;Regular education&lt;/td&gt;&lt;td&gt;ADHD&lt;/td&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td&gt;Girl&lt;/td&gt;&lt;td&gt;9&lt;/td&gt;&lt;td&gt;6&lt;/td&gt;&lt;td&gt;Regular education&lt;/td&gt;&lt;td&gt;Anxiety disorder&lt;/td&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td rowspan="2"&gt;4.&lt;/td&gt;&lt;td rowspan="2"&gt;Mother (43)&lt;/td&gt;&lt;td rowspan="2"&gt;Divorced&lt;/td&gt;&lt;td rowspan="2"&gt;Higher education&lt;/td&gt;&lt;td rowspan="2"&gt;2&lt;/td&gt;&lt;td&gt;Boy&lt;/td&gt;&lt;td&gt;14&lt;/td&gt;&lt;td&gt;6&lt;/td&gt;&lt;td&gt;Special education&lt;/td&gt;&lt;td&gt;ADHD&lt;/td&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td&gt;Girl&lt;/td&gt;&lt;td&gt;12&lt;/td&gt;&lt;td&gt;9&lt;/td&gt;&lt;td&gt;Regular education&lt;/td&gt;&lt;td&gt;ADHD&lt;/td&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td&gt;5.&lt;/td&gt;&lt;td&gt;Mother (38)&lt;/td&gt;&lt;td&gt;Married&lt;/td&gt;&lt;td&gt;Higher education&lt;/td&gt;&lt;td&gt;2&lt;/td&gt;&lt;td&gt;Boy&lt;/td&gt;&lt;td&gt;6&lt;/td&gt;&lt;td&gt;6&lt;/td&gt;&lt;td&gt;Regular education&lt;/td&gt;&lt;td&gt;ADHD&lt;/td&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td&gt;6.&lt;/td&gt;&lt;td&gt;Mother (36)&lt;/td&gt;&lt;td&gt;Married&lt;/td&gt;&lt;td&gt;Higher education&lt;/td&gt;&lt;td&gt;2&lt;/td&gt;&lt;td&gt;Boy&lt;/td&gt;&lt;td&gt;7&lt;/td&gt;&lt;td&gt;3&lt;/td&gt;&lt;td&gt;Special education&lt;/td&gt;&lt;td&gt;Coffin-Siris Syndrome, ADHD, Epilepsy&lt;/td&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td&gt;7.&lt;/td&gt;&lt;td&gt;Mother (47)&lt;/td&gt;&lt;td&gt;Married&lt;/td&gt;&lt;td&gt;Higher education&lt;/td&gt;&lt;td&gt;2&lt;/td&gt;&lt;td&gt;Girl&lt;/td&gt;&lt;td&gt;13&lt;/td&gt;&lt;td&gt;10&lt;/td&gt;&lt;td&gt;Special education&lt;/td&gt;&lt;td&gt;DCD&lt;/td&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td&gt;8.&lt;/td&gt;&lt;td&gt;Mother (48)&lt;/td&gt;&lt;td&gt;Married&lt;/td&gt;&lt;td&gt;Higher education&lt;/td&gt;&lt;td&gt;2&lt;/td&gt;&lt;td&gt;Girl&lt;/td&gt;&lt;td&gt;16&lt;/td&gt;&lt;td&gt;13&lt;/td&gt;&lt;td&gt;Special education&lt;/td&gt;&lt;td&gt;Severe suicidal thoughts&lt;/td&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td rowspan="2"&gt;9.&lt;/td&gt;&lt;td rowspan="2"&gt;Mother (39)&lt;/td&gt;&lt;td rowspan="2"&gt;Married&lt;/td&gt;&lt;td rowspan="2"&gt;Higher education&lt;/td&gt;&lt;td rowspan="2"&gt;3&lt;/td&gt;&lt;td&gt;Boy&lt;/td&gt;&lt;td&gt;11&lt;/td&gt;&lt;td&gt;5&lt;/td&gt;&lt;td&gt;Regular education&lt;/td&gt;&lt;td&gt;Bladder problems&lt;/td&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td&gt;Girl&lt;/td&gt;&lt;td&gt;8&lt;/td&gt;&lt;td&gt;8&lt;/td&gt;&lt;td&gt;Regular education&lt;/td&gt;&lt;td&gt;None&lt;/td&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td&gt;10.&lt;/td&gt;&lt;td&gt;Mother (50)&lt;/td&gt;&lt;td&gt;Cohabiting&lt;/td&gt;&lt;td&gt;Higher education&lt;/td&gt;&lt;td&gt;2&lt;/td&gt;&lt;td&gt;Boy&lt;/td&gt;&lt;td&gt;13&lt;/td&gt;&lt;td&gt;5&lt;/td&gt;&lt;td&gt;Special education&lt;/td&gt;&lt;td&gt;Gilles de la Tourette&lt;/td&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td&gt;11.&lt;/td&gt;&lt;td&gt;Mother (41)&lt;/td&gt;&lt;td&gt;Cohabiting&lt;/td&gt;&lt;td&gt;Higher education&lt;/td&gt;&lt;td&gt;3&lt;/td&gt;&lt;td&gt;Girl&lt;/td&gt;&lt;td&gt;9&lt;/td&gt;&lt;td&gt;5&lt;/td&gt;&lt;td&gt;Special education&lt;/td&gt;&lt;td&gt;ADHD&lt;/td&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td&gt;12.&lt;/td&gt;&lt;td&gt;Mother (42)&lt;/td&gt;&lt;td&gt;Married&lt;/td&gt;&lt;td&gt;Higher education&lt;/td&gt;&lt;td&gt;2&lt;/td&gt;&lt;td&gt;Boy&lt;/td&gt;&lt;td&gt;13&lt;/td&gt;&lt;td&gt;7&lt;/td&gt;&lt;td&gt;Regular education&lt;/td&gt;&lt;td&gt;ADHD&lt;/td&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td&gt;13.&lt;/td&gt;&lt;td&gt;Mother (38)&lt;/td&gt;&lt;td&gt;Married&lt;/td&gt;&lt;td&gt;Higher education&lt;/td&gt;&lt;td&gt;2&lt;/td&gt;&lt;td&gt;Boy&lt;/td&gt;&lt;td&gt;8&lt;/td&gt;&lt;td&gt;6&lt;/td&gt;&lt;td&gt;Regular education&lt;/td&gt;&lt;td&gt;None&lt;/td&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td&gt;14.&lt;/td&gt;&lt;td&gt;Mother (37)&lt;/td&gt;&lt;td&gt;Cohabiting&lt;/td&gt;&lt;td&gt;Secondary education&lt;/td&gt;&lt;td&gt;2&lt;/td&gt;&lt;td&gt;Boy&lt;/td&gt;&lt;td&gt;9&lt;/td&gt;&lt;td&gt;9&lt;/td&gt;&lt;td&gt;Regular education&lt;/td&gt;&lt;td&gt;ADHD&lt;/td&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td&gt;15.&lt;/td&gt;&lt;td&gt;Mother (47)&lt;/td&gt;&lt;td&gt;Married&lt;/td&gt;&lt;td&gt;Higher education&lt;/td&gt;&lt;td&gt;4&lt;/td&gt;&lt;td&gt;Boy&lt;/td&gt;&lt;td&gt;14&lt;/td&gt;&lt;td&gt;10&lt;/td&gt;&lt;td&gt;Special education&lt;/td&gt;&lt;td&gt;None&lt;/td&gt;&lt;/tr&gt;&lt;/tbody&gt;&lt;/table&gt; </ephtml> </p> <p>1 <emph>Note.</emph> ADHD = Attention Deficit Hyperactivity Disorder, DCD = Developmental Coordination Disorder, OCD = Obsessive-Compulsive Disorder.</p> <hd id="AN0194392926-9">Data Analysis</hd> <p>The data analysis followed the six-steps approach of [<reflink idref="bib9" id="ref70">9</reflink>], using the software program NVivo. In the first step, the first two authors familiarized themselves with the data. Specifically, the second author transcribed the data, and both the first and second authors repeatedly read the transcripts while marking ideas. In the second step, initial codes were generated by the second author, primarily utilizing a theory-driven approach based on the research objectives and the BR<sups>2</sups> theory ([<reflink idref="bib40" id="ref71">40</reflink>]). As a third step, the first two authors clustered the initial codes into potential themes. In the fourth step, this pattern of codes was reviewed with the last author. During this discussion, the first, second, and last authors evaluated whether this pattern accurately reflected the experiences of the mothers. In the fifth step, the first two authors defined and named themes, capturing the essence of the content within each theme. Lastly, a final structure was created (presented in Figure 1), while a narrative for each theme was written and associated quotes were reviewed by all authors ([<reflink idref="bib10" id="ref72">10</reflink>]). In each step, the data analysis consisted of recurrent phases of reading the interviews, coding the data, and creating themes.</p> <p>Graph: Figure 1. Overview of Identified Themes and Their Roles in the Unfolding Process and Manifestation of Parental Burnout.</p> <p>During the data analysis, we implemented various procedures to ensure qualitative rigor. Adhering to the different steps of analysis prescribed by [<reflink idref="bib9" id="ref73">9</reflink>] enhanced the transparency and transferability of this study. Furthermore, the discussions between the first, second, and last authors during the analytical phases (i.e., investigator triangulation) helped to mitigate the potential influence of the authors' own beliefs on the data analysis and reduced the risk of misinterpretation of the data ([<reflink idref="bib9" id="ref74">9</reflink>], 2013). Lastly, to ensure the credibility of the results, we provided each participant with their transcribed interview for review, allowing them to offer feedback (i.e., member checking).</p> <hd id="AN0194392926-10">Results</hd> <p>Figure 1 presents an overview of the themes identified through the thematic analysis and their roles in the development and manifestation of parental burnout. Five themes emerged as key stressors that profoundly weighed on mothers' balance before parental burnout, whereas two themes were identified as resources that provided some counterbalance to these stressors. However, in most cases, this prolonged imbalance was intensified by additional stressors (captured in three themes) at a critical moment, resulting in a tipping point toward parental burnout. Finally, seven themes were identified in mothers' lived experiences of parental burnout.</p> <hd id="AN0194392926-11">Aim 1: Exploring the Imbalance of Stressors Over Resources Prior to Parental Burnout</hd> <p>In accordance with the BR<sups>2</sups> theory ([<reflink idref="bib40" id="ref75">40</reflink>]), the first aim was to gain insight into the imbalance between stressors and resources prior to parental burnout, based on mothers' retrospective narratives. Mothers reported that the endless need for involvement, the child's challenging behaviors, the mother's irreplaceability, juggling multiple roles, and insufficient support were major stressors in raising the child on the autism spectrum.</p> <hd id="AN0194392926-12">Autism-Related Issues Requiring Round-the-Clock Care</hd> <p>Core characteristics of autism and associated features were identified as important stressors. Mothers noted that their child had a strong need for predictability and structure. Consequently, mothers adhered to routines specifically tailored to their child's needs, engaged in preventive measures, and carefully planned for various situations. Despite these efforts, there was a persistent fear that any deviation from the structure could potentially lead to a crisis of the child. Twelve mothers mentioned that they felt the need to be continuously vigilant and to "tune in" to monitor the situation. Furthermore, nine families encountered difficulties with specific activities such as eating and sleeping. Although they valued mealtimes as important moments for bonding, these occasions often turned into stressful experiences for both mother and child. Regarding sleeping, specific routines were often required to get the child to bed, with some mothers mentioning that these routines could take over an hour. These lengthy rituals extended mothers' daily responsibilities, leaving them with little time for themselves in the evening.</p> <p>We have lost our spontaneity. We cannot just say, "The weather is nice, let's go to the beach." They [her children on the autism spectrum] will say: "You did not tell me that, I did not know, and what are we going to do there?" Everything must be planned, as much as possible doing the same, and being available, that weighs the heaviest on me. (...) Making food is also difficult. She [daughter on the autism spectrum] is very picky; it must smell good, otherwise, she will not eat it. If she comes in and says, "It stinks" then I know she will not eat anything again. So, I sometimes prepare two different menus because I want them to eat something. (Interview 9)</p> <hd id="AN0194392926-13">The Burden of Externalizing and Internalizing Behaviors in Children on the Autism Spectrum</hd> <p>A second major stressor reported by mothers was the challenging behavior of their child on the autism spectrum. For 11 mothers, the child's externalizing behavior (i.e., verbal or physical aggression) drained their energy and led to feelings of embarrassment and inadequacy. In some cases, the child's behavior varied according to the context, with some children modifying their behavior to meet social expectations (e.g., at school). This effort often resulted in a buildup of tension, which was then released upon returning home. As the child appeared well-adjusted in environments outside the home, these outbursts were often less visible to others, leading mothers to question their own parenting. Additionally, two mothers noted that their child displayed severe internalizing behaviors, specifically suicidal thoughts, which caused persistent anxiety and left them feeling helpless.</p> <p>F. [child on the autism spectrum] is one of the most well-behaved children in class, but every evening, her backpack is thrown from the front door to the back door in anger or frustration. All the difficulties and issues she has faced throughout the day accumulate, and home is her safe haven where she can release her emotions. (Interview 3)</p> <p>The number of times she has begged me to end her life has been countless, so that is really very, very heavy. I feel like I have not given that child a gift by bringing her into this world. It has really been dozens of times that she says she cannot go on anymore. She wants her life to stop and tells me that I need to end it. (Interview 8)</p> <hd id="AN0194392926-14">When All Falls on One: The Weight of Feeling Irreplaceable</hd> <p>A third source of stress for many mothers was the perception of being irreplaceable. Ten mothers expressed a concern that the entire responsibility of raising their child on the autism spectrum seemed to rest solely on their shoulders. They believed that they knew their child best and were most familiar with their child's needs and routines, which reinforced their sense of constant availability and complicated the delegation of caregiving responsibilities to others. Moreover, traditional gender roles, wherein the father assumes the role of breadwinner and the mother is responsible for child-rearing, were frequently cited as contributing factors to this dynamic. Although in some cases, mothers reported that their partner was willing to assume greater parenting responsibilities, the child had become accustomed to the mother managing specific tasks, which led to an association of those tasks with her. This presented challenges for their partner in taking over these duties, resulting in frustration for both parents.</p> <p>When I lie down on the couch for a moment and she [child on the autism spectrum] wakes me up for her bath, my husband says, "I can do that too." And she responds, "No, Daddy, that will not work." Then I think, "Damn it, I cannot escape from this." (Interview 8)</p> <hd id="AN0194392926-15">Parenting Plus: Being a Manager, Driver, and Warrior for the Child</hd> <p>A fourth source of stress was juggling multiple roles beyond being a parent. These mothers often acted as the "managers" of their child, serving as the driving force behind the organization of support. Moreover, they structured their lives around the child's needs, such as reducing sensory overload by ensuring the child eats lunch at home or by avoiding bus transportation. In addition, many children in the sample were recommended to follow various therapies. As these therapies were often unavailable at school, many mothers were required to shuttle their child to therapy appointments after school. Furthermore, a lot of energy was invested in seeking appropriate support for their child, thereby often facing setbacks. Some mothers were engaged in a constant "battle" to secure what they believed was necessary for their child.</p> <p>The search for the right care is a challenging process that you can almost consider a separate journey alongside raising a child with difficulties. The struggle to get the right help, enduring waiting lists, and the battles you have with organizations—such as insisting that something needs to happen—are all part of it. (Interview 11)</p> <hd id="AN0194392926-16">Struggling in a Non-Supportive Environment</hd> <p>Mothers frequently experienced loneliness in raising their child on the autism spectrum. Support was often unavailable due to long waiting lists, and some mothers felt their situation was not taken seriously. They often encountered a tendency from others to downplay the challenges they faced, with comments like "It is not that bad." Some mothers also noted a generational gap in understanding their child's autism characteristics. The emphasis placed by their own parents and in-laws on discipline and child obedience, rooted in their own parenting experiences, often hindered meaningful dialogue about the challenges mothers faced at home. In addition, three mothers reported feeling pressured by societally prescribed parenting perfectionism, whereas other mothers felt that their parenting was criticized by others, despite tailoring their behaviors to their child's needs. For example, giving the child a tablet during a meltdown to help the child calm down was perceived by outsiders as rewarding bad behavior.</p> <p>I have read a lot of books on parenting, and you can raise F. [child without autism diagnosis] according to what is written in those books. But with J. [child on the autism spectrum], it is not at all like what is described in the books. It is about finding a way to handle things. The social pressure is very high because everyone around you, who does not have such a child [on the autism spectrum], perceives your child as if he could be raised like the ones in the books. Then you feel like you fail as a parent. It seems so easy for everyone else, but it does not work for me. (Interview 10)</p> <p>Despite the stressors, the interviews revealed that mothers shifted their perspectives and found joy in small pleasures and activities beyond parenting. Before the onset of parental burnout, these resources provided some counterbalance to their stressors in a dynamic way.</p> <hd id="AN0194392926-17">Embracing Reality: Shifting Perspectives and Finding Joy in Small Things</hd> <p>Mothers noted that raising a child on the autism spectrum provided them with a different perspective on life. Throughout the parenting process, they gradually learned to accept the autism diagnosis, to reorganize their lives, and to find strength in moments that might go unnoticed by others. Furthermore, due to the difficulties of planning and engaging in outdoor activities with the child, mothers mentioned that the pressure to constantly organize trips was reduced, which made them realize that life does not always need to proceed at a fast pace.</p> <p>He [child on the autism spectrum] has had the habit, ever since he was a baby, of having a cuddle time. It usually happens between seven and eight; then he crawls up to me on the couch with his cuddle, really pressing against me. Those are the moments when autism does not exist and give you the courage to say, "Come on, let's keep going." (Interview 1)</p> <hd id="AN0194392926-18">Energy from Activities Beyond Parenting</hd> <p>Almost all mothers mentioned that they gained energy from participating in activities unrelated to parenting. Activities such as going for a walk, engaging in sports, taking a course, reading a book, or watching TV series were mentioned in this context, but work was also frequently identified as an important resource, especially when opportunities to engage in leisure were limited. These activities often allowed mothers to recharge before returning to their parenting responsibilities. Moreover, some of these activities also facilitated social connections, as the demands of managing their child's autism-related challenges often limited their social interactions.</p> <p>I must admit that I was sometimes really happy to go to work during the pandemic. It was very nice to be something other than the mom who has to do everything in the house. So, I tried to do things on the side that had nothing to do with it. (Interview 5)</p> <hd id="AN0194392926-19">Aim 2: Identifying Factors Tipping Mothers From Parenting Stress to Parental Burnout</hd> <p>Nevertheless, the resources identified in mothers' narratives were insufficient to mitigate the considerable stressors they experienced. Parental burnout was described as emerging from a persistent, dynamic, and complex interplay among these factors. Notably, however, in multiple cases, mothers pinpointed in their retrospective reflections how additional stressors contributed to reaching their breaking point at a particular moment.</p> <hd id="AN0194392926-20">At the Edge of Despair: Losing Control and Being Out of Options</hd> <p>Nine mothers described situations in which their child's challenging behaviors escalated, often manifesting as aggression (due to more intense meltdowns) and, in some cases, as autistic burnout or suicidal tendencies. When these escalations occurred, mothers felt that they had lost control and no longer knew how to help their child. The challenges they faced seemed beyond their capacity to manage, leading to profound feelings of incompetence.</p> <p>We experienced severe aggression. I was covered in bruises and bite marks. (...) One time, she [child on the autism spectrum] bit my arm so hard it caused immense pain. The bite left a massive bruise with her tooth marks clearly visible. I ended up crying because it hurt so much. I thought, what is happening here? Is this really my child attacking me like a wild animal when I am just trying to help her? (...) I ended up hitting her back. That was the first and only time I did that to my child. I started crying even harder afterward, and eventually, she calmed down because I was so apologetic for what I had done. I was really at a loss for what to do. (Interview 7)</p> <hd id="AN0194392926-21">Stuck with No Way Out</hd> <p>Ten mothers reported feeling compelled to persist, often pushing their own limits. Although some mothers acknowledged that they knew they were reaching their limits, they found it extremely difficult, if not impossible, to detach from their parental responsibilities. They felt trapped, with no way to escape their situation.</p> <p>I saw myself like a Duracell bunny, just to keep going, to keep functioning, so that the family could keep running. I could not afford to stop. It was easiest for me to handle things at home and to help out. She [child on the autism spectrum] accepted it most from me, and I could calm her down the quickest, so it almost became logical that I had to keep going. (Interview 7)</p> <hd id="AN0194392926-22">Drowning Without a Lifeline</hd> <p>For many mothers, admitting that they were at the end of their rope and seeking help for themselves was a huge hurdle they had to overcome. When such help was ultimately requested but not provided, the burden on these mothers was further intensified and they became even more isolated. Within this context, mothers frequently expressed frustration regarding the waiting lists for mental health services and the lack of available crisis support.</p> <p>I requested help from various services for nearly a year. I was helpless because, to receive help, one must register with a crisis center, which cannot be done independently; a referral is needed. It was up to the school or the Center for Student Guidance to assume this responsibility, but they did not do anything despite my efforts to highlight my difficulties. My psychologist contacted the crisis center on my behalf but was met with the same response: no available spots, and they could not register me. (...) In November, I went on a hunger strike for 18 days to emphasize the urgency of the need for help. I sent emails to various agencies, my daughter's therapist, the school, and my own therapist, expressing that I could not take it anymore. That was more a cry for help than a real intention, but I wrote that if my daughter was not out of the house by Monday, I would put her on the street. (Interview 2)</p> <hd id="AN0194392926-23">Aim 3: Examining Lived Experiences of Parental Burnout</hd> <p>As a third objective, we explored the lived experiences of mothers during their episode(s) of parental burnout. Whereas some mothers were able to identify a distinct period with a clear beginning and end, others experienced the condition in a more dynamic manner, with multiple episodes of parental burnout occurring at different stages of their child's life.</p> <hd id="AN0194392926-24">Overwhelming Exhaustion on the Physical, Mental, and Emotional Level</hd> <p>Almost all mothers reported initially feeling extremely exhausted and fatigued, with many expressing an increased need for sleep. Three mothers also experienced physical symptoms of stress, such as headaches, back pain, or neck issues. This fatigue manifested not only physically but also mentally and emotionally. Nine mothers noted that they became more prone to crying or struggled with concentration, whereas others mentioned a lack of motivation to get up in the morning and face the challenges with their child once again.</p> <p>It was just black in my head, empty. Physically and emotionally, I was completely drained. I spent the whole day just sitting on the couch, staring into space. (Interview 13)</p> <hd id="AN0194392926-25">The Impossibility of Emotional Distancing from the Child on the Autism Spectrum</hd> <p>Due to the care needs of their child on the autism spectrum, several mothers reported that they could not afford to distance themselves emotionally from this child. They had to continuously address their child's emotional needs despite the exhaustion, with some mothers indicating that they had to do so to avoid crisis situations. As a result, there was often no energy left to invest in fun activities or in the relationship with their partner or other child(ren). Although most mothers persisted in attending to the emotional needs of their child on the autism spectrum, some acknowledged that they struggled to genuinely feel affection for the child, with the child's challenging behaviors being an important contributing factor.</p> <p>I was not functioning on autopilot because that does not work either. Someone with autism feels that immediately, and you get that feedback right away. (Interview 8)</p> <hd id="AN0194392926-26">Feeling Fed up with Parenting, Hopelessness, and Feelings of "Living Loss"</hd> <p>Mothers reported experiencing a profound desire to temporarily step away from their parenting role. They felt fed up with the constant adjustments required to accommodate their child on the autism spectrum. In addition, mothers experienced increased hopelessness, perceiving their family situation as an unending struggle. They realized that new challenges would continue to emerge as their child on the autism spectrum grew older, and they felt fed up with the ongoing search for solutions. Moreover, heightened feelings of "living loss" (i.e., a form of lifelong grief caused by a chronic illness or a disability) were experienced, as mothers grappled more with existential questions about why they had a child on the autism spectrum and wondered if their situation would have been easier with a neurotypical child.</p> <p>I went through a period where I struggled to love my children. There was even a time when I wished my children were dead. It is hard to admit, but it is the truth. (Interview 10)</p> <p>I thought, what if he was not here? What if he was like my youngest? Or what if my youngest had been my first, then everything would have been easier. I also started blaming myself: why did the birth control pill not work? (...) I found myself wishing I did not have him and thinking about how I could minimize my time with him. (Interview 14)</p> <hd id="AN0194392926-27">Then and Now: Clear Contrast with Earlier Parenting Behaviors and Values</hd> <p>All mothers reported a substantial change in how they functioned as parents compared to earlier times. For example, they lacked the energy to engage in enjoyable activities with their child(ren), which previously required less effort. Additionally, seven mothers admitted that they no longer recognized themselves in their actions, such as resorting to verbal or physical aggression during moments of crisis, even though they would have preferred alternative approaches. Furthermore, mothers noted a shift in adherence to parenting values that were important for them before experiencing parental burnout. They experienced difficulties in maintaining their standards, such as preparing fresh meals for their child(ren).</p> <p>I really thought to myself: this is not who I am. I stood in front of the mirror and thought, what have I become? I was just a shadow of who I once was. I wondered how I had allowed myself to get to this point because I am normally a very strong and positive person. But then, I had no strength left, no positivity in my body, nothing. (Interview 1)</p> <hd id="AN0194392926-28">Stumbling Through the Emotional Landscape of Failure, Guilt, and Shame</hd> <p>Mothers indicated that their inability to meet the image of the parent they want to be led to profound feelings of failure. They perceived themselves as inadequate mothers and often attributed the challenges they faced in parenting to their own behaviors. Furthermore, many mothers admitted that, during parental burnout, they frequently compared themselves to other parents, which only intensified their sense of failure. Social media played a substantial role in this, as the frequent portrayal of the "happy family" online created the impression that others do not encounter difficulties in parenting. Moreover, these experiences were often accompanied by guilt and shame, arising not only from the perception of falling short as a parent but also from the emergence of certain thoughts or feelings (e.g., wishing to disappear) and behaviors (e.g., aggression toward the child) that are deemed socially unacceptable. This often hindered them from discussing their feelings with people outside their family context.</p> <p>I did not tell many people about it or talk about it much. I do now, but not during that period. I was ashamed that I just could not manage it. (Interview 4)</p> <hd id="AN0194392926-29">The Professional Cost of Parental Burnout</hd> <p>Parental burnout originated within the family context, yet often had a direct impact on the professional lives of these mothers, necessitating a step back from their careers. For some, their job had previously been a refuge, allowing them to detach from family stress and to recharge. Nevertheless, due to extreme exhaustion, work performance frequently began to suffer. The ongoing difficulties at home impeded some mothers' ability to meet professional expectations. Because the home context cannot be turned off, whereas the work context can be, this often resulted in a reduction in working hours or even leaving their job.</p> <p>I went to work to escape from what was happening at home. (...) But it reached a point where I was no longer myself at work. I started reacting differently than I normally would. I was very irritated, and—sorry, I am getting a bit emotional—this was the moment when I realized that I could not continue like this. (Interview 13)</p> <hd id="AN0194392926-30">Family Relationships on the Brink</hd> <p>Parental burnout also placed considerable pressure on family relationships. In many families, even before parental burnout occurred, the partner relationship was already under strain, as mothers frequently struggled to engage in activities with their partner due to difficulties in arranging suitable care for their child on the autism spectrum. However, during the period of parental burnout, mothers had neither the desire nor the energy to engage in activities with their partner. Furthermore, mothers experienced increased irritability, negative moods, reduced tolerance, and diminished responsiveness, not only toward their partner but also toward their other child(ren). Three mothers admitted that their child(ren) without autism had to become more self-reliant. In certain cases, siblings had to assume some parental responsibilities due to the mother's lack of energy to manage these tasks.</p> <p>I felt very guilty toward the other children because they were disadvantaged by having a sister with autism, which already changed their lives. On top of that, they had a mother who reacted with anger. Additionally, we could not do many fun things because I did not always respond kindly. (Interview 11)</p> <hd id="AN0194392926-31">Discussion</hd> <p>Despite extensive quantitative research demonstrating that parents of children on the autism spectrum face elevated parenting stress (e.g., [<reflink idref="bib21" id="ref76">21</reflink>]), and preliminary evidence suggesting that they are also more vulnerable to parental burnout (e.g., [<reflink idref="bib28" id="ref77">28</reflink>]), there is a notable lack of qualitative studies offering an in-depth understanding of how parental burnout develops and manifests within this specific parent population. This study aimed to address this gap by conducting interviews with mothers of children on the autism spectrum who experienced parental burnout, thereby (<reflink idref="bib1" id="ref78">1</reflink>) examining the imbalance of stressors and resources before the onset of parental burnout, (<reflink idref="bib2" id="ref79">2</reflink>) identifying the factors that escalated their parenting stress into parental burnout, and (<reflink idref="bib3" id="ref80">3</reflink>) exploring their lived experiences during parental burnout.</p> <hd id="AN0194392926-32">The Weight of Caring: Prolonged Imbalance Between Stressors and Resources</hd> <p>Using the BR<sups>2</sups> theory as a framework, this study revealed that autism characteristics (e.g., the need for predictability and structure) and associated behaviors (e.g., the child's externalizing and internalizing behaviors) were major stressors on these mothers' balance. In their retrospective narratives, mothers expressed a constant need to monitor situations to prevent crises and experienced feelings of incompetence and helplessness when managing their child's challenging behaviors. These insights deepen our understanding of the emotional and physical burden in this parent population ([<reflink idref="bib18" id="ref81">18</reflink>]) and extend previous quantitative research identifying both autism characteristics and challenging behaviors as major predictors of stress among parents of children on the autism spectrum ([<reflink idref="bib1" id="ref82">1</reflink>]). This study further indicates that challenging behaviors not only generate sustained parenting stress but can also contribute to the transition to parental burnout. In many cases, the escalation of the child's challenging behaviors has been crucial in pushing mothers to their breaking point. This finding aligns with previous quantitative research indicating a transactional relationship between challenging behaviors in children on the autism spectrum and parental well-being, suggesting a cyclical pattern in which parenting stress and the child's challenging behaviors feed into each other over time ([<reflink idref="bib51" id="ref83">51</reflink>]). Consequently, an intriguing avenue for future research is to further investigate whether and how this buildup may predispose parents to parental burnout, while also exploring the systemic and transactional nature of these relationships. Specifically, examining the relationship between parental burnout and the child's challenging behaviors—along with their interplay with available resources—through methods such as diary assessments, could considerably enhance our understanding of the dynamics involved in this condition within this parent population.</p> <p>Beyond the constant management of autism characteristics and associated behaviors, this study showed that raising a child on the autism spectrum can also lead to feelings of being irreplaceable, which substantially increase mothers' time dependence burden (i.e., restricted personal time), developmental burden (i.e., personal or social underdevelopment), and social burden (e.g., role conflicts; [<reflink idref="bib18" id="ref84">18</reflink>]). These feelings of irreplaceability were previously identified in qualitative research in parents of children on the autism spectrum ([<reflink idref="bib15" id="ref85">15</reflink>]; [<reflink idref="bib16" id="ref86">16</reflink>]), and in parents taking care of their adult son or daughter on the autism spectrum ([<reflink idref="bib61" id="ref87">61</reflink>]), and have also been observed in parents of children with other complex care needs, such as cerebral palsy, where a mother described her child as "partially her shadow" ([<reflink idref="bib17" id="ref88">17</reflink>]). This profound sense of being "essential" may resonate on a deep psychosocial level in which the role of responsible caregiver has become inseparable from a mother's identity. Although cultural traditions and societal expectations that continue to cast mothers as primary caregivers may contribute to these feelings, other factors, including the child's need for predictability (which requires a caregiver familiar with their routines), and the lack of accessible support systems for temporarily delegating the care for their child on the autism spectrum, might also foster this perception. To try to deal with these feelings of irreplaceability and counterbalance other stressors, mothers' retrospective narratives revealed that they frequently engaged in activities outside of parenting. Such activities, serving as a resource according to the BR<sups>2</sups> theory, allowed them to temporarily disconnect from their home environment and maintain social connections. These efforts to engage in satisfying and energizing activities indicate that mothers display need crafting, that is, a proactive search for deeply enriching experiences of autonomy, relatedness, and competence ([<reflink idref="bib12" id="ref89">12</reflink>]; [<reflink idref="bib31" id="ref90">31</reflink>]). In spite of their efforts, the narratives in this study revealed that as mothers approached their breaking point, this resource became less accessible, and feelings of irreplaceability were further amplified. The perception of inescapability and the belief that no one else could take over their role when feeling overwhelmed contributed to the transition from parenting stress to parental burnout. Despite the importance of this theme for the theoretical understanding of parenting stress and parental burnout in this parent population, as well as for the development of prevention and intervention strategies, there remains a lack of quantitative research addressing this issue.</p> <p>What extensive research does clearly demonstrate, however, is the significant relationship between social support and the well-being of parents raising children on the autism spectrum. Previous quantitative research has convincingly shown that low levels of social support in these parents are associated with higher levels of parenting stress, parental burnout, depression, and anxiety ([<reflink idref="bib3" id="ref91">3</reflink>]; [<reflink idref="bib14" id="ref92">14</reflink>]). This theme also emerged in the qualitative study of Ren et al. (2024), in which Chinese parents raising children on the autism spectrum reported that a lack of internal and external support, along with societal discrimination, contributed to their experiences of parental burnout. This study extends these findings to the European context, indicating that insufficient social support plays a role in the development of parental burnout among European mothers as well. As demonstrated in previous qualitative research in parents of children with complex care needs ([<reflink idref="bib45" id="ref93">45</reflink>]; [<reflink idref="bib50" id="ref94">50</reflink>]), parents often have to advocate for their child and must undertake numerous tasks independently (such as transportation to therapies). For parents of children on the autism spectrum, raising their child in environments that lack autism awareness and understanding, along with the long waiting periods for diagnoses and access to services, further exacerbate their challenges ([<reflink idref="bib15" id="ref95">15</reflink>]; [<reflink idref="bib41" id="ref96">41</reflink>]). It typically takes more than a year from the moment concerns about the child are raised to diagnostic assessment ([<reflink idref="bib36" id="ref97">36</reflink>]). Once diagnosed, families face even more waiting for publicly funded interventions and often need to resort to expensive private care. This study indicates that this prolonged struggle to receive formal support can facilitate the transition to parental burnout, particularly when support is inaccessible during periods of extreme exhaustion. Several mothers in this study turned to crisis intervention services as a "last resort", where they again faced waiting lists. Timely support could potentially prevent such crises and alleviate the pressure on these services.</p> <hd id="AN0194392926-33">The Collapse of Imbalance: When Parental Burnout Occurs in the Context of Autism</hd> <p>Regarding the lived experiences of parental burnout, this study revealed many parallels with the experiences of mothers raising neurotypical children ([<reflink idref="bib25" id="ref98">25</reflink>]). Participants in this study indicated that they gradually experienced intense exhaustion, which subsequently developed into other dimensions of parental burnout, corroborating the findings of [<reflink idref="bib54" id="ref99">54</reflink>] in the general parent population. Primarily, extreme exhaustion, feeling fed up with parenting, and contrast with the previous parental self were very salient among the mothers in the present study. Another similarity with mothers from the general parent population was the presence of feelings of failure, guilt, and shame. Mothers in the qualitative study by [<reflink idref="bib25" id="ref100">25</reflink>] indicated that negative emotions toward their child(ren) and a loss of self-control undermined their sense of competence, and that their inability to meet the normative expectations of what defines a good mother was a source of guilt and shame, which is consistent with the findings of the current study.</p> <p>However, some manifestations of parental burnout also appeared to be specific to the context of parenting a child on the autism spectrum, or, even more broadly, to raising a child with complex care needs. First, although some mothers reported difficulties in feeling affection for their child on the autism spectrum during parental burnout, the dimension of emotional distancing manifested differently. Mothers indicated that, despite their extreme exhaustion, they consistently had to address their child's emotional needs to avoid crises. This experience aligns closely with the concept of "burn-on" (i.e., being burnt out yet having no option but to continue), which was previously discussed in the study by [<reflink idref="bib44" id="ref101">44</reflink>] as an alternative to burnout among parents of children with complex care needs. However, mothers in the current study reported that emotional distancing did occur with their other child(ren) and occasionally with their partner. Second, this study revealed that the dimension of feeling fed up with parenting was characterized by feelings of hopelessness and "living loss", primarily due to the lack of any foreseeable improvement concerning the challenges presented by the child on the autism spectrum.</p> <p>Furthermore, this study also offers fresh and nuanced insights into the profound impact of parental burnout, which have not been previously documented in the literature. Specifically, this study provides an understanding of how parental burnout can adversely affect professional careers, and how the ongoing care for a child with complex care needs negatively influences family relationships when parents are experiencing parental burnout. Hence, not only the emotional and psychological consequences for mothers themselves, but also the financial repercussions (due to mothers' reduced working hours or interruptions in their professional careers) and the pressure placed on family relationships, as highlighted in this study, render parental burnout a concerning condition that must be taken seriously.</p> <hd id="AN0194392926-34">Practical Implications</hd> <p>This study yields important implications for practice. First, the findings demonstrate that parenting stress can accumulate over time, ultimately surpassing mothers' capacity to cope. The unfolding process of parental burnout highlights the need for preventive measures that alleviate the burden on these mothers. One crucial step is to improve access to services that equip parents with tools and skills needed to navigate the challenges of raising a child on the autism spectrum. Achieving this, however, requires policy changes to reduce the long waitlists that currently characterize the autism care landscape ([<reflink idref="bib36" id="ref102">36</reflink>]). Another critical area is the need for timely relief from parental duties, especially for mothers, who typically shoulder most responsibilities and may feel compelled to manage them alone. Therefore, prevention and intervention strategies should adopt a family-oriented approach that encourages shared caregiving responsibilities among partners. Moreover, to provide parents with "breathing space", increased investment in respite care and specialized services with trained staff, as well as recreational activities for children on the autism spectrum, is essential. Such initiatives might not only support children's development but also offer parents opportunities to pursue personal interests and strengthen connections with their partner, other child(ren), or network, which are vital resources for mitigating parental burnout ([<reflink idref="bib59" id="ref103">59</reflink>]). Although such services and initiatives exist, it is imperative to ensure that they are flexible, accessible, and financially viable for all families. This, of course, also requires substantial investment at the policy level. Given the growing population of individuals on the autism spectrum and the already existing strain on publicly funded services, policymakers must prioritize these issues. Addressing these issues not only plays a vital role in enhancing these parents' well-being but also in fostering the development of children on the autism spectrum by maximizing their potential and minimizing barriers to adaptation, two pillars of the leading paradigm for autism support ([<reflink idref="bib29" id="ref104">29</reflink>]).</p> <p>Finally, a third pillar of effective autism support is environmental adjustment ([<reflink idref="bib29" id="ref105">29</reflink>]). The salient social isolation and substantial emotional barriers faced by mothers in this study pinpoint a pressing societal responsibility to enhance autism awareness and to create more supportive environments for children on the autism spectrum and their families. As resilience is multi-systemic ([<reflink idref="bib34" id="ref106">34</reflink>]), prevention must extend beyond the family unit to address broader societal factors. In particular, tackling systemic issues such as stigma, misinformation, and lack of community support is essential. By building a more informed and caring society, for instance, guided by the neurodiversity movement (which advocates for embracing neurological diversity and fosters autism acceptance; [<reflink idref="bib47" id="ref107">47</reflink>]) and supported by public awareness campaigns, we can foster the development of community-based support systems, empower parents to form support networks, and ultimately strengthen both individual and collective resilience.</p> <hd id="AN0194392926-35">Limitations and Future Directions</hd> <p>When interpreting the results, some limitations need to be taken into consideration. First, the recruitment strategy required parents to register for participation voluntarily, and the invitation was disseminated predominantly through online parent groups consisting mainly of mothers. Consequently, the sample was largely composed of highly educated individuals and exclusively comprised mothers. Future research would benefit from including interviews with a more diverse range of mothers, as well as fathers of children on the autism spectrum who have experienced parental burnout, since research indicates that mothers and fathers may find different aspects of their child's behavior particularly stressful ([<reflink idref="bib32" id="ref108">32</reflink>]). Second, the sample exhibited considerable heterogeneity in terms of socio-demographic and child characteristics, leaving unclear to what extent these factors influence the development and manifestation of parental burnout. Future research is needed to investigate how specific factors (e.g., amount of support, socioeconomic status, number of children with complex care needs in the family, type of complex care needs, intensity of support needs, and co-occurring problems in children) shape parents' experiences, and to explore to what extent the unfolding process of parental burnout is consistent across different family contexts. Furthermore, examining how culture influences the development and manifestation of parental burnout in these parents also represents a compelling avenue for future research. Finally, although the application of the BR<sups>2</sups> theory in this study might suggest potential causal relationships between the identified themes and parental burnout, the qualitative nature of this study does not allow for drawing any conclusions about the direction of effects. Underlying reciprocal relationships are indeed highly plausible, such as between parenting stress and the child's challenging behaviors. To further clarify these dynamics, quantitative research with prospective longitudinal, diary-based, or experimental designs is essential.</p> <hd id="AN0194392926-36">Acknowledgments</hd> <p>The authors express their deep appreciation to the mothers for their openness about their parenting experiences.</p> <ref id="AN0194392926-37"> <title> References </title> <blist> <bibl id="bib1" idref="ref1" type="bt">1</bibl> <bibtext> Al-Oran H. M., Khuan L. (2021). Predictors of parenting stress in parents of children diagnosed with autism spectrum disorder: A scoping review. The Egyptian Journal of Neurology, Psychiatry and Neurosurgery, 57(1), Article 103. https://doi.org/10.1186/s41983-021-00345-w</bibtext> </blist> <blist> <bibl id="bib2" idref="ref2" type="bt">2</bibl> <bibtext> American Psychiatric Association. (2013). 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Desimpelaere: Conceptualization, Formal analysis, Methodology, Writing – Original Draft, Writing – Review &amp; Editing. Dora Verreu: Conceptualization, Formal analysis, Methodology, Writing – Original Draft. Els Ortibus: Writing – Review &amp; Editing. Bart Soenens: Writing – Review &amp; Editing. Peter Prinzie: Writing – Review &amp; Editing. Sarah S. W. De Pauw: Conceptualization, Formal analysis, Methodology, Writing – Review &amp; Editing.</bibtext> </blist> <blist> <bibtext> The authors have no competing interests to declare.</bibtext> </blist> <blist> <bibtext> Informed consent was obtained from all individual participants included in the study.</bibtext> </blist> <blist> <bibtext> The data that support the findings of this study are not publicly available due to the identifiable nature of the sample. This study was not preregistered.</bibtext> </blist> <blist> <bibtext> The study was approved by the Institutional Review Board (2022/006). The procedures used in this study adhere to the tenets of the Declaration of Helsinki.</bibtext> </blist> <blist> <bibtext> The authors disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This research was funded by grants from the Fund for Scientific Research Flanders (FWO) awarded to Eline Desimpelaere (11F5124N) and Peter Prinzie (G0DCB23N).</bibtext> </blist> <blist> <bibtext> Eline N. Desimpelaere https://orcid.org/0000-0003-3692-4320 Els Ortibus https://orcid.org/0000-0002-1020-4408 Bart Soenens https://orcid.org/0000-0003-1581-3656 Peter Prinzie https://orcid.org/0000-0003-3441-7157 Sarah S.W. De Pauw https://orcid.org/0000-0002-4462-2755</bibtext> </blist> </ref> <aug> <p>By Eline N. Desimpelaere; Dora Verreu; Els Ortibus; Bart Soenens; Peter Prinzie and Sarah S.W. De Pauw</p> <p>Reported by Author; Author; Author; Author; Author; Author</p> </aug> <nolink nlid="nl1" bibid="bib39" firstref="ref4"></nolink> <nolink nlid="nl2" bibid="bib37" firstref="ref5"></nolink> <nolink nlid="nl3" bibid="bib19" firstref="ref6"></nolink> <nolink nlid="nl4" bibid="bib55" firstref="ref7"></nolink> <nolink nlid="nl5" bibid="bib27" firstref="ref8"></nolink> <nolink nlid="nl6" bibid="bib28" firstref="ref9"></nolink> <nolink nlid="nl7" bibid="bib43" firstref="ref10"></nolink> <nolink nlid="nl8" bibid="bib30" firstref="ref11"></nolink> <nolink nlid="nl9" bibid="bib53" firstref="ref15"></nolink> <nolink nlid="nl10" bibid="bib25" firstref="ref16"></nolink> <nolink nlid="nl11" bibid="bib26" firstref="ref17"></nolink> <nolink nlid="nl12" bibid="bib52" firstref="ref18"></nolink> <nolink nlid="nl13" bibid="bib38" firstref="ref19"></nolink> <nolink nlid="nl14" bibid="bib57" firstref="ref21"></nolink> <nolink nlid="nl15" bibid="bib40" firstref="ref22"></nolink> <nolink nlid="nl16" bibid="bib54" firstref="ref24"></nolink> <nolink nlid="nl17" bibid="bib21" firstref="ref25"></nolink> <nolink nlid="nl18" bibid="bib35" firstref="ref26"></nolink> <nolink nlid="nl19" bibid="bib20" firstref="ref28"></nolink> <nolink nlid="nl20" bibid="bib16" firstref="ref31"></nolink> <nolink nlid="nl21" bibid="bib41" firstref="ref33"></nolink> <nolink nlid="nl22" bibid="bib24" firstref="ref34"></nolink> <nolink nlid="nl23" bibid="bib36" firstref="ref35"></nolink> <nolink nlid="nl24" bibid="bib15" firstref="ref36"></nolink> <nolink nlid="nl25" bibid="bib56" firstref="ref37"></nolink> <nolink nlid="nl26" bibid="bib62" firstref="ref40"></nolink> <nolink nlid="nl27" bibid="bib32" firstref="ref44"></nolink> <nolink nlid="nl28" bibid="bib58" firstref="ref45"></nolink> <nolink nlid="nl29" bibid="bib13" firstref="ref46"></nolink> <nolink nlid="nl30" bibid="bib23" firstref="ref47"></nolink> <nolink nlid="nl31" bibid="bib42" firstref="ref48"></nolink> <nolink nlid="nl32" bibid="bib60" firstref="ref53"></nolink> <nolink nlid="nl33" bibid="bib48" firstref="ref55"></nolink> <nolink nlid="nl34" bibid="bib33" firstref="ref58"></nolink> <nolink nlid="nl35" bibid="bib49" firstref="ref59"></nolink> <nolink nlid="nl36" bibid="bib22" firstref="ref65"></nolink> <nolink nlid="nl37" bibid="bib46" firstref="ref66"></nolink> <nolink nlid="nl38" bibid="bib11" firstref="ref69"></nolink> <nolink nlid="nl39" bibid="bib10" firstref="ref72"></nolink> <nolink nlid="nl40" bibid="bib18" firstref="ref81"></nolink> <nolink nlid="nl41" bibid="bib51" firstref="ref83"></nolink> <nolink nlid="nl42" bibid="bib61" firstref="ref87"></nolink> <nolink nlid="nl43" bibid="bib17" firstref="ref88"></nolink> <nolink nlid="nl44" bibid="bib12" firstref="ref89"></nolink> <nolink nlid="nl45" bibid="bib31" firstref="ref90"></nolink> <nolink nlid="nl46" bibid="bib14" firstref="ref92"></nolink> <nolink nlid="nl47" bibid="bib45" firstref="ref93"></nolink> <nolink nlid="nl48" bibid="bib50" firstref="ref94"></nolink> <nolink nlid="nl49" bibid="bib44" firstref="ref101"></nolink> <nolink nlid="nl50" bibid="bib59" firstref="ref103"></nolink> <nolink nlid="nl51" bibid="bib29" firstref="ref104"></nolink> <nolink nlid="nl52" bibid="bib34" firstref="ref106"></nolink> <nolink nlid="nl53" bibid="bib47" firstref="ref107"></nolink> |
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| Items | – Name: Title Label: Title Group: Ti Data: From Caring to Collapsing: A Qualitative Exploration of Parental Burnout in Mothers of Children on the Autism Spectrum – Name: Language Label: Language Group: Lang Data: English – Name: Author Label: Authors Group: Au Data: <searchLink fieldCode="AR" term="%22Eline+N%2E+Desimpelaere%22">Eline N. Desimpelaere</searchLink> (ORCID <externalLink term="https://orcid.org/0000-0003-3692-4320">0000-0003-3692-4320</externalLink>)<br /><searchLink fieldCode="AR" term="%22Dora+Verreu%22">Dora Verreu</searchLink><br /><searchLink fieldCode="AR" term="%22Els+Ortibus%22">Els Ortibus</searchLink> (ORCID <externalLink term="https://orcid.org/0000-0002-1020-4408">0000-0002-1020-4408</externalLink>)<br /><searchLink fieldCode="AR" term="%22Bart+Soenens%22">Bart Soenens</searchLink> (ORCID <externalLink term="https://orcid.org/0000-0003-1581-3656">0000-0003-1581-3656</externalLink>)<br /><searchLink fieldCode="AR" term="%22Peter+Prinzie%22">Peter Prinzie</searchLink> (ORCID <externalLink term="https://orcid.org/0000-0003-3441-7157">0000-0003-3441-7157</externalLink>)<br /><searchLink fieldCode="AR" term="%22Sarah+S%2E+W%2E+De+Pauw%22">Sarah S. W. De Pauw</searchLink> (ORCID <externalLink term="https://orcid.org/0000-0002-4462-2755">0000-0002-4462-2755</externalLink>) – Name: TitleSource Label: Source Group: Src Data: <searchLink fieldCode="SO" term="%22Exceptional+Children%22"><i>Exceptional Children</i></searchLink>. 2026 92(4):502-523. – Name: Avail Label: Availability Group: Avail Data: SAGE Publications. 2455 Teller Road, Thousand Oaks, CA 91320. Tel: 800-818-7243; Tel: 805-499-9774; Fax: 800-583-2665; e-mail: journals@sagepub.com; Web site: https://sagepub.com – Name: PeerReviewed Label: Peer Reviewed Group: SrcInfo Data: Y – Name: Pages Label: Page Count Group: Src Data: 22 – Name: DatePubCY Label: Publication Date Group: Date Data: 2026 – Name: TypeDocument Label: Document Type Group: TypDoc Data: Journal Articles<br />Reports - Research – Name: Subject Label: Descriptors Group: Su Data: <searchLink fieldCode="DE" term="%22Burnout%22">Burnout</searchLink><br /><searchLink fieldCode="DE" term="%22Mothers%22">Mothers</searchLink><br /><searchLink fieldCode="DE" term="%22Children%22">Children</searchLink><br /><searchLink fieldCode="DE" term="%22Autism+Spectrum+Disorders%22">Autism Spectrum Disorders</searchLink><br /><searchLink fieldCode="DE" term="%22Child+Rearing%22">Child Rearing</searchLink><br /><searchLink fieldCode="DE" term="%22Stress+Variables%22">Stress Variables</searchLink><br /><searchLink fieldCode="DE" term="%22Adolescents%22">Adolescents</searchLink><br /><searchLink fieldCode="DE" term="%22Behavior+Problems%22">Behavior Problems</searchLink><br /><searchLink fieldCode="DE" term="%22Parent+Role%22">Parent Role</searchLink><br /><searchLink fieldCode="DE" term="%22Social+Support+Groups%22">Social Support Groups</searchLink><br /><searchLink fieldCode="DE" term="%22Resilience+%28Psychology%29%22">Resilience (Psychology)</searchLink><br /><searchLink fieldCode="DE" term="%22Coping%22">Coping</searchLink> – Name: DOI Label: DOI Group: ID Data: 10.1177/00144029251389391 – Name: ISSN Label: ISSN Group: ISSN Data: 0014-4029<br />2163-5560 – Name: Abstract Label: Abstract Group: Ab Data: Parental burnout (PB)--a condition characterized by intense exhaustion in the parental role, emotional distancing from one's children, feeling fed up with parenting, and contrast with the previous parental self--has gained increasing attention, predominantly among parents of neurotypical children. Research on PB in parents of children with complex care needs, such as children on the autism spectrum, is comparatively limited, despite indications of elevated PB levels in this population. This qualitative study aims to deepen the understanding of PB in mothers raising children on the autism spectrum by (1) examining the imbalance of stressors over resources mothers encounter before PB, (2) identifying the factors that push them over the edge into PB, and (3) exploring their lived experiences of PB. Fifteen mothers of children on the autism spectrum (aged 6 to 16 years) who experienced PB participated in a semi-structured interview. The thematic analysis revealed major stressors, including the child's challenging behaviors, the mother's perceived irreplaceability, the struggle to balance multiple roles, and inadequate social support. Although mothers shifted perspectives and found relief in activities beyond parenting, this proved insufficient to offset their overwhelming stress. This imbalance, compounded by loss of control, feelings of entrapment, and absence of a lifeline, culminated in PB. Interestingly, in the manifestation of PB, emotional distancing was less pronounced, and feeling fed up with parenting was closely tied to feelings of "living loss". This study enhances the understanding of PB in mothers raising children on the autism spectrum and paves the way toward more tailored parent support. – Name: AbstractInfo Label: Abstractor Group: Ab Data: As Provided – Name: DateEntry Label: Entry Date Group: Date Data: 2026 – Name: AN Label: Accession Number Group: ID Data: EJ1508198 |
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| RecordInfo | BibRecord: BibEntity: Identifiers: – Type: doi Value: 10.1177/00144029251389391 Languages: – Text: English PhysicalDescription: Pagination: PageCount: 22 StartPage: 502 Subjects: – SubjectFull: Burnout Type: general – SubjectFull: Mothers Type: general – SubjectFull: Children Type: general – SubjectFull: Autism Spectrum Disorders Type: general – SubjectFull: Child Rearing Type: general – SubjectFull: Stress Variables Type: general – SubjectFull: Adolescents Type: general – SubjectFull: Behavior Problems Type: general – SubjectFull: Parent Role Type: general – SubjectFull: Social Support Groups Type: general – SubjectFull: Resilience (Psychology) Type: general – SubjectFull: Coping Type: general Titles: – TitleFull: From Caring to Collapsing: A Qualitative Exploration of Parental Burnout in Mothers of Children on the Autism Spectrum Type: main BibRelationships: HasContributorRelationships: – PersonEntity: Name: NameFull: Eline N. Desimpelaere – PersonEntity: Name: NameFull: Dora Verreu – PersonEntity: Name: NameFull: Els Ortibus – PersonEntity: Name: NameFull: Bart Soenens – PersonEntity: Name: NameFull: Peter Prinzie – PersonEntity: Name: NameFull: Sarah S. W. De Pauw IsPartOfRelationships: – BibEntity: Dates: – D: 01 M: 07 Type: published Y: 2026 Identifiers: – Type: issn-print Value: 0014-4029 – Type: issn-electronic Value: 2163-5560 Numbering: – Type: volume Value: 92 – Type: issue Value: 4 Titles: – TitleFull: Exceptional Children Type: main |
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