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Understanding of Autism and the Diagnostic Process in Uzbekistan: Mothers' Perspectives

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Title: Understanding of Autism and the Diagnostic Process in Uzbekistan: Mothers' Perspectives
Language: English
Authors: Kristie Asaro-Saddler (ORCID 0000-0003-2247-7419), Narmene Hamsho, Mohinur Uzoqova, Hedayat Ghazali
Source: Research and Practice for Persons with Severe Disabilities. 2026 51(2):79-93.
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: 15
Publication Date: 2026
Document Type: Journal Articles
Reports - Research
Descriptors: Foreign Countries, Autism Spectrum Disorders, Parent Attitudes, Mothers, Knowledge Level, Clinical Diagnosis, Misconceptions, Disability Identification, Barriers, Cultural Influences
Geographic Terms: Uzbekistan
DOI: 10.1177/15407969251343493
ISSN: 1540-7969
2169-2408
Abstract: Although much is known about autism worldwide, it is not well understood in many non-Western communities. The purpose of this study was to add to the limited database on autism in underrepresented countries by exploring Uzbek mothers' understanding of autism and their perceptions of their child's assessment and diagnostic process. Seven mothers in Uzbekistan participated in a semistructured, open-ended focus group interview conducted remotely via Zoom. Data were analyzed using thematic analysis. Findings revealed that mothers had a good understanding of the causes of autism, though some still lacked knowledge and believed in theories such as vaccines, and that mothers described a long and difficult identification process, highlighted by a lack of trained professionals and services in Uzbekistan. The findings highlight the influence of several contextual factors uniquely distinct to Uzbekistan that would be important to consider for practitioners and future efforts designed to support this population.
Abstractor: As Provided
Entry Date: 2026
Accession Number: EJ1504057
Database: ERIC
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  Value: <anid>AN0193276616;myx01jun.26;2026Apr29.02:19;v2.2.500</anid> <title id="AN0193276616-1">Understanding of Autism and the Diagnostic Process in Uzbekistan: Mothers' Perspectives </title> <p>Although much is known about autism worldwide, it is not well understood in many non-Western communities. The purpose of this study was to add to the limited database on autism in underrepresented countries by exploring Uzbek mothers' understanding of autism and their perceptions of their child's assessment and diagnostic process. Seven mothers in Uzbekistan participated in a semistructured, open-ended focus group interview conducted remotely via Zoom. Data were analyzed using thematic analysis. Findings revealed that mothers had a good understanding of the causes of autism, though some still lacked knowledge and believed in theories such as vaccines, and that mothers described a long and difficult identification process, highlighted by a lack of trained professionals and services in Uzbekistan. The findings highlight the influence of several contextual factors uniquely distinct to Uzbekistan that would be important to consider for practitioners and future efforts designed to support this population.</p> <p>Keywords: autism; family perceptions; cultural responsiveness; Uzbekistan; Central Asia</p> <p>Much of the current literature regarding families of children with autism is focused on developed, high-income countries, conforming to Western cultures in the Global North ([<reflink idref="bib6" id="ref1">6</reflink>]; [<reflink idref="bib22" id="ref2">22</reflink>]; [<reflink idref="bib25" id="ref3">25</reflink>]; [<reflink idref="bib33" id="ref4">33</reflink>]). In fact, in a scoping global review of parental perspectives on autism in English language journals, [<reflink idref="bib31" id="ref5">31</reflink>] found only six studies from low/middle-income countries (four from Asia, one from Africa, and one from the Middle East), with the majority of the studies coming from the United States, United Kingdom, Canada, and Europe. This is concerning given the unique culture, values, and beliefs characteristic of Uzbekistan that limits the ability to generalize existing research conducted within other countries to children with autism in[<reflink idref="bib5" id="ref6">5</reflink>] Uzbekistan. Furthermore, since research demonstrates the effectiveness of using culturally responsive interventions on both children with autism and their families ([<reflink idref="bib15" id="ref7">15</reflink>]), it is essential to understand the cultural nuances of Uzbekistan and how Uzbek people navigate autism. Therefore, the present qualitative study aims to address this critical need by examining the understanding of autism and the diagnostic process from the perspective of parents of children who have received an autism diagnosis.</p> <p>Uzbekistan is a diverse nation whose citizens represent various ethnic identities, including Russian, Tatar, Kazakh, Turkmen, Kyrgyz, and Tajik ([<reflink idref="bib29" id="ref8">29</reflink>]). Much of the community's understanding of disability is derived from several sociocultural forces unique to the region. For example, programs and policies developed during the former Soviet Union have contributed to the medical model approach the community adopts when perceiving disability ([<reflink idref="bib33" id="ref9">33</reflink>]). As a result, many people with disabilities in Uzbekistan are stigmatized, considered "invisible," or viewed as people to be pitied ([<reflink idref="bib28" id="ref10">28</reflink>]). The Uzbek community's understanding of autism is further influenced by the patriarchal structure—such that autism is often thought to be the "mother's fault"—which results in women with disabilities being at greater risk of discrimination ([<reflink idref="bib28" id="ref11">28</reflink>]). Faith and spirituality are another important cultural factor to consider. While Islam is the predominant religion, other faiths coexist ([<reflink idref="bib29" id="ref12">29</reflink>]). Like other former Soviet republics, there is a strong belief in karma, where some believe that disabilities or conditions such as autism are deserved or a direct result of destiny (e.g., [<reflink idref="bib13" id="ref13">13</reflink>]).</p> <p>Structural inequities regarding autism are prevalent in Uzbekistan. The cost of health and social services is high, especially in rural areas, which often results in many families being unable to afford needed services ([<reflink idref="bib32" id="ref14">32</reflink>]). There are few places in the country equipped to provide accurate autism diagnoses, and even there, experts may have insufficient knowledge about autism ([<reflink idref="bib24" id="ref15">24</reflink>]). Fortunately, voices and concerns have been raised to help children and their families with autism in Uzbekistan, as in other former Soviet countries (e.g., [<reflink idref="bib4" id="ref16">4</reflink>]). Professionals are undergoing autism-specific training and a center in Tashkent has been established to support children with autism ("[<reflink idref="bib8" id="ref17">8</reflink>]). The Uzbek government has also enlisted the support of partners—such as Avlod Baraka, an organization committed to supporting people with autism and their families—to better serve their citizens. However, it is essential to acknowledge that these changes are still in their nascent stages ("[<reflink idref="bib8" id="ref18">8</reflink>]). To best support practitioners in their selection of culturally sensitive interventions, it is imperative that the literature offers guidance regarding Uzbekistan's current understanding of autism and the difficulties faced when families seek a diagnosis for their child.</p> <p>In a scoping review of 11 autism-focused studies conducted within Central Asia ([<reflink idref="bib33" id="ref19">33</reflink>]), several concerns related to acquiring diagnoses, access to services, and the lack of trained professionals were apparent. One study from Kazakhstan, another Central Asian country, explored parental perspectives regarding the state of autism and support received in their country ([<reflink idref="bib4" id="ref20">4</reflink>]). Overall, parents reported a long and difficult process to obtain a diagnosis, mostly based on old Soviet methodologies focused on the medical model of disability. Families describe services as fragmented and limited, provided by professionals who lack understanding and knowledge of autism across health care, educational, and social domains.</p> <p>In another study, [<reflink idref="bib30" id="ref21">30</reflink>] dissertation research investigated Uzbek parents' perceptions on having children with autism specifically in Uzbekistan. The author found that Uzbek parents had many different ideas about why their children had autism, including morals and medicine. Implications included the need for change in Uzbekistan to better support children and families financially, and to have better training for doctors, nurses, and social workers.</p> <p>Before culturally responsive information and interventions can be developed to support families of children with autism around the world, it is critical that research comprehensively investigate the experiences of these communities to ensure supports are appropriately addressing areas of need ([<reflink idref="bib6" id="ref22">6</reflink>]). This would include understanding family's perceptions of autism and their experiences with the diagnostic process in their country as these two issues may significantly impact whether a family seeks support from providers. As noted by [<reflink idref="bib18" id="ref23">18</reflink>], practitioners who aim to provide tailored services to families in need must account for the parents' experiences and cultural beliefs. Recognizing that most published autism research is conducted in high-income, Westernized countries (e.g., [<reflink idref="bib31" id="ref24">31</reflink>]), [<reflink idref="bib6" id="ref25">6</reflink>] proposed a conceptual framework for considering the cultural and contextual factors impacting a family's recognition of autism symptoms at four levels, including expression, recognition, interpretation, and reporting.</p> <p>The first level of [<reflink idref="bib6" id="ref26">6</reflink>] framework, expression, relates to the extent to which symptoms are viewed similarly in different countries and different cultures, recognizing that broad areas (e.g., social communication) are shared across cultures but that subtleties within them may vary. This includes qualitative and quantitative differences, as well as the extent of the difference. Recognition refers to the cultural differences that impact whether and what age atypical behavior or traits relevant to ASD are recognized by families. This includes cultural norms of parenting and competing priorities (e.g., health concerns, poverty, or living in a war-torn country may outweigh attention to autism symptoms), as well as having an awareness of autism characteristics to recognize them. Interpretation focuses on how families explain behaviors and the cultural factors that impact this explanation. For example, some cultures may attribute autism to genetics or biological purposes, while others consider it a gift or punishment from God. Factors such as stigma also influence interpretation. The final level of the framework is reporting symptoms to professionals. This includes barriers to seeking help, such as affordability, accessibility, geographic limitations or language barriers, and acceptability of seeking services, as well as quality of support received when assistance is sought. De Leeuw and colleagues developed this framework for use in low- and middle-income countries, specifically focusing on the cultural factors that may affect identification, help-seeking and diagnosis. Consequently, it is an appropriate framework for the current study.</p> <p>The work of [<reflink idref="bib6" id="ref27">6</reflink>] and others (e.g., [<reflink idref="bib33" id="ref28">33</reflink>]) clearly indicates a need for additional research to understand the experience of autism in countries such as Uzbekistan. This information is crucial to the work of practitioners offering supports and services to these communities. Thus, the purpose of this study was to add to the limited database on autism in underrepresented countries such as Uzbekistan by exploring the experiences of mothers of children diagnosed with autism, as studied by [<reflink idref="bib4" id="ref29">4</reflink>] in Kazakhstan. Specifically, the research questions were as follows:</p> <p></p> <ulist> <item> <bold> Research Question 1 (RQ1): </bold> What are Uzbek mothers' understanding of autism?</item> <p></p> <item> <bold> Research Question 2 (RQ2): </bold> What are Uzbek mothers' perceptions of their child's assessment and diagnostic process?</item> </ulist> <hd id="AN0193276616-2">Method</hd> <p></p> <hd id="AN0193276616-3">Participants</hd> <p>Because we sought to gather in-depth understanding of autism within Uzbekistan, purposeful selection was utilized ([<reflink idref="bib19" id="ref30">19</reflink>]). Specifically, we recruited seven mothers who regularly attended a support group for families of children with autism who felt empowered to share their opinions and experiences. This support group is led by the third author and organized by an organization supporting parents of children with autism in Uzbekistan that offers support to families, training for practitioners, and pushes forward awareness-raising initiatives about autism. The seven participating mothers were present for the interviews; five participated by contributing responses, while the other two chose to be listeners and agree with other parents' statements. Participant information is available in Table 1.</p> <p>Table 1. Participant Demographics.</p> <p>Graph</p> <p> <ephtml> <table><colgroup><col align="left" /><col align="char" char="." /><col align="char" char="." /><col align="char" char="." /><col align="char" char="." /><col align="char" char="." /><col align="char" char="." /><col align="char" char="." /><col align="char" char="." /><col align="char" char="." /></colgroup><thead><tr><th align="center">Participant</th><th align="center">Gender identity</th><th align="center">Age</th><th align="center">Nationality</th><th align="center">Marital status</th><th align="center">Child's current age</th><th align="center">Other co-occurring diagnoses</th><th align="center">Family members</th><th align="center">Age of diagnosis</th><th align="center">Child's gender</th></tr></thead><tbody><tr><td>1</td><td>Female</td><td>32</td><td>Uzbek</td><td>Married</td><td>7</td><td>Intellectual disability</td><td>Husband, father, mother, sister</td><td>2 years</td><td>Male</td></tr><tr><td>2</td><td>Female</td><td>44</td><td>Polish</td><td>Single</td><td>6</td><td>GNB 1 Encephalopathy</td><td>Father, 3 sisters, 2 daughters</td><td>4.5 years</td><td>Female</td></tr><tr><td>3</td><td>Female</td><td>39</td><td>Uzbek</td><td>Married</td><td>11</td><td>N/A</td><td>Husband, father, mother, 2 other children</td><td>3 years</td><td>Male</td></tr><tr><td>4</td><td>Female</td><td>35</td><td>Uzbek</td><td>Married</td><td>5</td><td>N/A</td><td>Husband, 2 daughters, 1 son</td><td>5 years</td><td>Female</td></tr><tr><td>5</td><td>Female</td><td>39</td><td>Uzbek</td><td>Married</td><td>6</td><td>N/A</td><td>Husband, father, mother, brother</td><td>1 year, 8 months</td><td>Male</td></tr><tr><td>6</td><td>Female</td><td>35</td><td>Uzbek</td><td>Married</td><td>11</td><td>Hypoxia</td><td>Husband, father, daughter</td><td>3 years</td><td>Male</td></tr><tr><td>7</td><td>Female</td><td>32</td><td>Uzbek</td><td>Married</td><td>6</td><td>Language delay</td><td>Husband, older son</td><td>2.5 years</td><td>Male</td></tr></tbody></table> </ephtml> </p> <hd id="AN0193276616-4">Procedures</hd> <p>In this study, data were gathered using a semistructured, open-ended focus group interview conducted remotely via Zoom. A focus group was selected rather than individual interviews based on the participants' preference and their comfort with discussing their children in a group format. The goal of the interviewing process was to capture data for a qualitative analysis of the experiences of families of children with autism in Uzbekistan. The recruitment process was as follows: upon receiving Institutional Review Board approval, the third author contacted all mothers who were enrolled in her family support group and shared information about the study. Interested participants were given informed consent information. After obtaining consent from each participant, the interview was scheduled at a mutually convenient time.</p> <p>Prior to the start of the interview, the interviewer reiterated the purpose of the study, explained that the interviews would be recorded and transcribed, that codes would be used for names, and their rights to confidentiality. The interview was conducted via Zoom in Russian. A standard set of interview questions were asked, with the interviewer elaborating or repeating a question if necessary. The interview lasted approximately 65 minutes.</p> <hd id="AN0193276616-5">Instrument</hd> <p>Questions for this interview were adapted from a study the authors conducted in a culturally similar Central Asian country (i.e., Tajikistan). Questions were designed to address recommendations from [<reflink idref="bib23" id="ref31">23</reflink>] and included demographic questions (e.g., age and ethnicity), experience and behavior questions (e.g., "What does autism mean to you?"), opinion and values questions (e.g., "How has your child's diagnosis influenced your attention and perception of autism?"), feeling questions (e.g., "How did you approach the diagnosis?"), and knowledge questions (e.g., "What do you think causes autism?"). Items were selected to elicit sufficient information to answer our research questions. The semistructured nature allowed the interviewer to follow-up or ask the question again if necessary. The questions are available from the first author upon request.</p> <hd id="AN0193276616-6">Translation</hd> <p>The systematic framework of [<reflink idref="bib1" id="ref32">1</reflink>] was considered when making decisions about the translation process. Translation was necessary since three of the researchers were not fluent in the preferred first language of the participants (Russian). The interview was recorded in Russian and transcribed in Russian. Member check of the transcript occurred before translation to English (see "Validity and Trustworthiness" section). Then, the entire transcript was translated into English by the third author, who is a fluent in both Russian and English, and, as a native of Uzbekistan, is familiar with dialect that may be used by Uzbek people ([<reflink idref="bib1" id="ref33">1</reflink>]). Back translation was conducted by a person outside the research team who is a native speaker of Russian and is also fluent in English, to identify ambiguities or errors in the translation.</p> <hd id="AN0193276616-7">Data Analysis</hd> <p>The data in this qualitative study were analyzed using thematic analysis, a technique used to identify patterns of meaning in qualitative data ([<reflink idref="bib17" id="ref34">17</reflink>]). Given that the present research was a preliminary study aimed at contributing to a limited literature base, thematic analysis was selected as it is in line with our goal of describing and interpreting patterns within the collected data as opposed to developing new theoretical insights. An inductive approach was used to allow themes to emerge from that data and allow for new theories to be elucidated through the analysis of the data. The first and second authors, both of whom had experience analyzing qualitative interview data, reviewed the data. Each researcher independently engaged in familiarization and a first round of coding, during which they read and reread the data until they were familiar with the content and felt comfortable starting the process of coding. Using the data, each researcher created codes to organize the data around emerging themes and patterns within the data and created an independent table of codes for initial coding. Multiple rounds of coding meetings then occurred whereby the researchers compared their lists, definitions, and examples of the codes, revised and clarified codes, identified unexpected themes, and clarified the wording of subcodes.</p> <p>The definitions of the codes, along with examples from the transcripts, ensured validity among coders. Each code and subcode was discussed between coders so that when independent coding was conducted each had the same understanding of the code's and subcode's definition. Ultimately, there were the initial readings of the transcripts to draft the table of codes, one round of independent coding done by each coder, and eight meetings of the two coders going through each code in the transcript together for data analysis. A complete table of the themes and their definitions are included in Tables 2 and 3.</p> <p>Table 2. Themes in Response to Research Question 1: What Are Uzbek Mothers' Understanding of Autism?</p> <p>Graph</p> <p> <ephtml> <table><colgroup><col align="left" /><col align="char" char="." /><col align="char" char="." /></colgroup><thead><tr><th align="center">Theme/subtheme</th><th align="center">Definition</th><th align="center">Example quotations</th></tr></thead><tbody><tr><td colspan="3">Causes of autism</td></tr><tr><td> 1. Genetic</td><td>Mother refers to mutations or variants within genes as the cause of autism.</td><td>• I am curious if autism considered a genetic disorder? I understand that genetics may play a role. (Mother 4)• We already know for sure, we even describe that it is our variant, it also contains autism in addition to all other symptoms, so we already know why we have autism. (Mother 1)</td></tr><tr><td> 2. Environment</td><td>Mother indicates that environmental factors may be linked to the diagnosis of autism.</td><td>• Currently, we have a very poor ecology with polluted air and contaminated water. It's uncertain if these environmental factors are linked to the rise in mutations, as there is a new mutation that is not hereditary or transmitted from any of us. It seems to be an unexpected occurrence, like a fortunate accident. However, the consequences of this mutation remain unknown. Perhaps due to the ecological conditions, there has been an increase... (Mother 1)</td></tr><tr><td> 3. Vaccinations</td><td>Mother reports they believe autism is the result of vaccinations.</td><td>• For some individuals, the trigger for autism might be associated with vaccination against measles. (Mother 2)• In my personal experience, there was a noticeable change in my child after vaccination. Prior to that, my child made eye contact and had some speech development. However, things changed following the vaccination. It's worth noting that my child no longer receives any vaccinations. (Mother 4)</td></tr><tr><td> 4. Poor mothering</td><td>Mother believes autism is a result of poor mothering</td><td>• Previously, when I saw a child displaying certain behaviors, I would attribute it to poor upbringing. (Mother 1)</td></tr><tr><td> 5. Divine intervention</td><td>Mother believes child was destined or sent to them from a spiritual power</td><td>• Through this journey, I have come to believe that my child was entrusted to me by a higher power (Mother 3).• Personally, in my family, my husband and I have realized that this child is a gift from God, entrusted to us, and we will love and support them unconditionally (Mother 4)</td></tr><tr><td colspan="3">Definition of autism</td></tr><tr><td> 1. Individualistic</td><td>Mother indicates child does not conform to societal norms and has their own way of doing things</td><td>• When it comes to my child's autism, I notice that he desires everything to align with his own preferences. He does not want to conform to what we consider as societal norms. For a person with autism, the concept of "norm" may not apply in the same way, as they have their own set of norms that may not align with ours. (Mother 3)</td></tr><tr><td> 2. Communication differences</td><td>Mother reports notable limitations in their child's verbal and nonverbal communication skills</td><td>•... did not use pointing gestures. (Mother 3)•... our child had no speech development at that time. (Mother 5)• She didn't show interest in toys or follow them with her eyes. She also didn't pay attention to me when I entered or left the room. (Mother 1)• At the age of one year and five months, my daughter did not make eye contact, did not respond to her name. (Mother 3)</td></tr><tr><td> 3. Aggressive behaviors</td><td>Mother reports hostile behaviors toward self, others, and/or property.</td><td>• When my child was around one and a half years old, I noticed some concerning behaviors. He was very aggressive, would bite. (Mother 3)</td></tr><tr><td> 4. Regression</td><td>Mother notes their child lost skills they initially mastered</td><td>• Initially, my child had speech, contact, and developmental progress. However, after a period of refusal, approximately two months later, everything that my child had previously learned and developed up until the age of two and a half disappeared. This included basic abilities such as using the potty, holding a spoon, or grasping a pen. (Mother 2)• There was a noticeable regression... The child went through constant changes, and by the age of three, they had no speech and showed little attention to the world around them. (Mother 5)</td></tr></tbody></table> </ephtml> </p> <p>Table 3. Themes in Response to Research Question 2: What were Mothers' Perceptions of their Child's Assessment and Diagnostic Process?</p> <p>Graph</p> <p> <ephtml> <table><colgroup><col align="left" /><col align="char" char="." /><col align="char" char="." /></colgroup><thead><tr><th align="center">Theme</th><th align="center">Definition</th><th align="center">Example quotations</th></tr></thead><tbody><tr><td>1. Mothers noticed behavioral differences</td><td>Mother mentions differences they observed in their child's development in comparison to milestones, expectations, or other children</td><td>• It turned out that when comparing my daughter with older children, I noticed certain differences. (Mother 1)• I started noticing that he didn't resemble other children. Even before consulting doctors, I personally realized that he had autism. (Mother 2)• When my child was around one and a half years old, I noticed some concerning behaviors. (Mother 3)• At the age of one year and five months, my daughter did not make eye contact, did not respond to her name, and did not use pointing gestures. These were noticeable developmental markers at that time (Mother 3)</td></tr><tr><td>2. Doctor labels the Mother concerns</td><td>Doctor helps mother to make meaning of the various signs they notice by identifying the concerns as part of a medical condition.</td><td>• At first, I didn't fully grasp the significance of these signs. We went to different doctors, and when he was almost two years old, epilepsy was diagnosed in Tashkent. (Mother 3)• We were unaware that our child had autism until three years later when we started visiting doctors. (Mother 5)• During this time, I didn't suspect autism as a possibility, as I had only seen it once in my life, while visiting America. However, when I expressed concerns about my child's lack of speech and difficulty with attention, the pediatrician explained that these were signs to watch for in a child, and she referred me for further assessment. (Mother 3)</td></tr><tr><td>3. Assessment techniques</td><td>Mothers discuss the assessment tools and processes that medical professionals used to inform a diagnosis</td><td>•... admitted to the autism department and underwent assessments like the M-CHAT. (Mother 1)• I had been conducting my own research and assessments at home for about a year prior to that. We continue to engage in self-diagnosis and self-monitoring periodically. (Mother 1)• Eventually, we received our diagnosis after undergoing a comprehensive evaluation that included genetic testing. Our primary genetic condition is called encephalopathy, which includes comorbidities such as autism and epilepsy. (Mother 1)• [The therapist] asked if my child would turn the lights on and off, to which I answered no. Additionally, she inquired about any aggression during cartoon watching. (Mother 3)• An ultrasound revealed an intraventricular lesion, and we were referred to a neurologist. Since then, we have been visiting various doctors. (Mother 1)</td></tr><tr><td>4. Delayed process</td><td>Mother notes the process to obtain an autism diagnosis was lengthy</td><td>• It took around 4 and a half years to obtain the diagnosis. (Mother 1)• Definitely not knowing the medical staff, I think they are not sufficiently aware of how the diagnosis is delayed. (Mother 1)</td></tr><tr><td>5. Lack of trained professionals</td><td>Mothers indicate practitioners lack autism expertise and/or are in short supply</td><td>• We need to educate professors, doctors, Mothers, and the general public about the diverse nature of autism. (Mother 4)• We need well-trained and motivated occupational therapists, not undereducated specialists. It is important to have qualified professionals who are genuinely interested in their field. Personally, I would love to pursue studies in this area, but unfortunately, occupational therapy is not taught in our region. (Mother 1)• Medication for epilepsy was prescribed, but a Russian pediatrician later informed me that those medications were not appropriate for children and gradually helped me transition away from them. (Mother 3)</td></tr><tr><td>6. Visited multiple doctors</td><td>Mothers were referred to and/or visited multiple doctors in order to obtain a diagnosis.</td><td>• We went to different doctors, and when he was almost two years old, epilepsy was diagnosed in Tashkent. (Mother 3)•... when I expressed concerns about my child's lack of speech and difficulty with attention, the pediatrician explained that these were signs to watch for in a child, and she referred me for further assessment. (Mother 3)• I traveled to Tashkent and was referred to a psychotherapist who diagnosed my child with "Speech Delay" in Russian. (Mother 3)• An ultrasound revealed an intraventricular lesion, and we were referred to a <bold>neurologist</bold>. Since then, we have been visiting various doctors. (Mother 1)</td></tr><tr><td>7. Mothers have important information to share</td><td>Mothers note that they hold knowledge of their child that could facilitate the assessment and diagnostic process.</td><td>• Mothers and caregivers of children with autism are often well-informed about their child's needs and are actively seeking appropriate interventions and therapies. (Mother 1)• It's crucial to listen to and respect the expertise of Mothers and professionals who are familiar with the specific needs and strengths of individuals with autism, rather than relying on generalized advice or assumptions. (Mother 1)</td></tr></tbody></table> </ephtml> </p> <hd id="AN0193276616-8">Validity and Trustworthiness</hd> <p>This qualitative research takes place in the real-world context of families of children with autism in Uzbekistan. To ensure this research is valid and trustworthy, considerations of confirmability, reliability, internal validity, external validity, and application ([<reflink idref="bib19" id="ref35">19</reflink>]; [<reflink idref="bib20" id="ref36">20</reflink>]) were considered. Specifically, we used the following: (a) confirmability by clarifying intentions of the research to the participants; (b) triangulation, through multiple independent coders who conducted interrater reliability checks, and engaged in discussion until consensus was reached; (c) member check, by having each participant read through the transcript (in Russian, prior to translation) for correctness; (d) audit trail, by providing a detailed account of data analysis process; (e) rich thick descriptions of participants, setting, and process as well as interview findings; and (f) peer expert review, by having a colleague experienced in qualitative data analysis and who works in the autism field with families of children with autism, scan the raw data to assess whether the findings seem credible, and researcher positionality (see below).</p> <hd id="AN0193276616-9">Researcher Positionality</hd> <p>The authors identified as either male or female, and collectively represent diverse racial and ethnic identities, which include White, Middle Eastern North African (MENA), and Turkish. The authors reflect a variety of nationalities including American; Iranian; Uzbek; and first-, second-, and third-generation U.S. residents. The authors identify with different faiths including Christian, Jewish, Muslim, or no religious affiliation. Collectively, the team brings vast experience working with children on the spectrum and their families, and each team member has supported culturally and linguistically diverse autistic students and families. Specifically, our team included one author who previously served as a special education teacher, another author with a background in school psychology, and two doctoral students enrolled in educational psychology and clinical psychology programs. Two of the authors have developed and distributed valuable resources that provide assistance to parents, caregivers, and educators of children on the spectrum both within the United States and abroad. Three of the authors have experience in the diagnosis and intervention of autism. Finally, one author is actively involved in the autism-focused community agency from which the participants of the current study were recruited. We are sharply aware of the limitation that our team did not include any neurodivergent team members. We each identify as autistic allies who strive to listen to autistic and other diverse perspectives, challenge systemic ableism, and advocate for neurodiversity. As researchers, we strive to bring attention to the needs of people with autism and their families in marginalized and underrepresented areas. We seek to understand the varying perspectives of people with autism and their families and bring awareness to the needs of their respective communities, all while viewing the experiences through an appropriate cultural lens.</p> <hd id="AN0193276616-10">Findings and Discussion</hd> <p></p> <hd id="AN0193276616-11">Research Question 1: Uzbek Mothers' Understanding of Autism</hd> <p>Participants demonstrated their knowledge and understanding of autism throughout the interview. Key themes related to this first research question were organized into one of two categories (see Table 2), which reflected either mothers' understanding of the various factors that contribute to the development of autism or highlighted the constellation of behaviors that make up autism. One mother indicated that their understanding was supported by self-directed learning, noting, "I had been conducting my own research and assessments at home for about a year prior to [my child's official diagnosis]."</p> <hd id="AN0193276616-12">Causes of Autism</hd> <p>The mothers referenced several internal and external factors they believe contributes to the development of autism. One mother noted that they once believed that autism was the result of <emph>poor parenting</emph>, stating "previously, when I saw a child displaying certain behaviors, I would attribute it to poor upbringing." This same mother later indicated that they now understood autism to be "part of a genetic mutation." Only two mothers referenced <emph>genetics</emph> as a contributor to autism, and across these two mothers, their confidence in genetics as the causation of autism seemed to differ. For example, one mother confidently stated, "We already know for sure, we even describe that it is our variant... so we already know why we have autism." This same mother later wondered aloud whether the factors in the <emph>environment</emph> may be a precursor to genetic mutations:</p> <p>Currently, we have a very poor ecology with polluted air and contaminated water. It's uncertain if these environmental factors are linked to the rise in mutations, as there is a new mutation that is not hereditary or transmitted from any of us. It seems to be an unexpected occurrence, like a fortunate accident. However, the consequences of this mutation remain unknown. Perhaps due to the ecological conditions, there has been an increase in the diagnosis of autism in children.</p> <p>However, the second mother expressed doubt regarding whether genetics was the sole cause of autism, stating,</p> <p>I am curious if autism is considered a genetic disorder? I understand that genetics may play a role, but I also want to mention that in my personal experience, there was a noticeable change in my child after vaccination. Prior to that, my child made eye contact and had some speech development. However, things changed following the vaccination. It's worth noting that my child no longer receives any vaccinations.</p> <p>Indeed, the influence of <emph>vaccinations</emph> was the most widely mentioned cause of autism, referenced by three of the five interviewed mothers. The belief that vaccines cause autism is not unique to Uzbekistan; studies have reported this to be a widely held belief around the world ([<reflink idref="bib9" id="ref37">9</reflink>]). Although this issue has not been studied specifically within Uzbekistan, a systematic review noted vaccine hesitancy around the world can be related to various factors and that within Kyrgyzstan (a Central Asian country culturally similar to Uzbekistan) a negative relation was observed between education levels and anti-vaccination attitudes ([<reflink idref="bib14" id="ref38">14</reflink>]). Addressing this misconception is a public health need within Uzbekistan to better promote an understanding of autism.</p> <p>Finally, two mothers believe their child's diagnosis was the result of <emph>divine intervention</emph> describing their children as "a gift from God" who was "entrusted to me by a higher power." This is in line with our earlier discussion noting that religion is a prominent aspect of Uzbek culture with most of the population identifying as Muslim ([<reflink idref="bib29" id="ref39">29</reflink>]) and that some Uzbek people believe in karma, or destiny, as a cause of autism ([<reflink idref="bib13" id="ref40">13</reflink>]). Furthermore, as noted by [<reflink idref="bib6" id="ref41">6</reflink>], religion was an important factor of influence that impacts an individual's interpretation of a diagnosis of autism.</p> <hd id="AN0193276616-13">Defining Autism</hd> <p>As noted by [<reflink idref="bib6" id="ref42">6</reflink>], cultural norms set expectations for what is deemed "typical behavior." Thus, the characteristics of autism that are recognized by caregivers may be influenced by culture and are likely to differ across communities. Within the current study, Uzbek mothers described the various presentations they noted to be characteristic of autism. Two mothers indicated the individualistic nature of autism where one mother explained, "autism has its own world, its own aura" and another saying,</p> <p>When it comes to my child's autism, I notice that he desires everything to align with his own preferences. He does not want to conform to what we consider as societal norms. For a person with autism, the concept of "norm" may not apply in the same way, as they have their own set of norms that may not align with ours.</p> <p>Another commonly referenced characteristics of autism mentioned across three of the mothers were verbal and nonverbal communication differences. Expressive communication difficulties were noted ("... limited speech and vocabulary") along with receptive communication challenges ("... did not respond to her name"). However, most of the differences related to nonverbal communication, such as challenges related to gesturing ("... did not use pointing gestures") and eye movements ("... did not make eye contact"). This is unsurprising, given a global review of literature found that families in both low-/middle- and high-income countries report communication as their earliest and greatest concerns ([<reflink idref="bib31" id="ref43">31</reflink>]).</p> <p>Although most of the autism characteristics described by the participating mothers align with the definition of autism familiar to Western cultures, one noted her child's aggression (specifically, their inclination to bite others) as a notable behavior of concern that led her to suspect her child might have autism.</p> <p>One additional defining feature of autism observed by two of the mothers was the notable regression in previously mastered skills. Similar reports of "regression" were also frequently noted by parents in [<reflink idref="bib13" id="ref44">13</reflink>] study in Tajikistan, another Central Asian country. Both mothers linked this regression back to their belief that vaccines cause autism, as one explained,</p> <p>When my child turned three years old, they had received all their vaccinations. However, following that, there was a noticeable regression in their development. The child went through constant changes, and by the age of three, they had no speech and showed little attention to the world around them.</p> <p>Several characteristics of autism familiar to Western-conforming cultures and identified in the <emph>Diagnostic and Statistical Manual of Mental Disorders</emph> (5th ed.; text rev.; <emph>DSM-5-TR</emph>; [<reflink idref="bib3" id="ref45">3</reflink>]) were not mentioned by the Uzbek mothers in the current study. These include restricted, repetitive patterns of behavior, special interests, preference for routines, and sensory sensitivity. There may be several reasons for this omission. First, as [<reflink idref="bib6" id="ref46">6</reflink>] framework indicates, cultural norms of typical behavior strongly influence the characteristics that are not recognized by the caregiver. Therefore, this absence may reflect the larger cultures' views regarding the acceptance of these behaviors. Second, [<reflink idref="bib24" id="ref47">24</reflink>] reported that Uzbek families often lack understanding of autism. Therefore, despite the fact that these mothers attend regular support groups have engaged in self-directed learning about autism, it is not surprising that they were unable to identify certain characteristics. Finally, the mothers may have unintentionally forgotten these characteristics during the interview. Therefore, it remains unclear why these behaviors were not mentioned.</p> <hd id="AN0193276616-14">Research Question 2: Mothers' Perceptions of Their Child's Assessment and Diagnostic Process</hd> <p>The second research question examined the perceptions of mothers regarding their child's assessment and diagnostic process. Seven themes emerged from the data (see Table 3 for definitions and examples of these themes). As mentioned earlier, cultural beliefs and attitudes can shape a parent's understanding and interpretation of their child's autism. As [<reflink idref="bib6" id="ref48">6</reflink>] highlight, culture is also a significant contributor to whether a parent perceives their child's behavior as rising to the level of concern that indicates the need to seek a medical diagnosis of autism for their child.</p> <p>Three of the interviewed mothers reported that <emph>they noticed behavioral differences</emph> in their child's development when compared with same aged peers in relation to progression toward developmental milestones and meeting age-appropriate expectations. These mothers elaborated further upon the differences they directly observed, including: "didn't show interest in toys or follow them with her eyes," "didn't pay attention to me when I entered or left the room," "limited speech and vocabulary," "did not respond to her name." These differences are explained in further detail in the earlier section entitled <emph>Defining Autism</emph>.</p> <p>As noted by [<reflink idref="bib6" id="ref49">6</reflink>], once the characteristics of autism are recognized by the parent, various factors (i.e., religion, cultural beliefs and attitudes, stigma, and mental health literacy) can influence whether they seek a medical diagnosis or not. It is noteworthy that all the mothers interviewed for the present study had sought a diagnosis of autism for their child. Several acknowledged the importance of doctors in helping them understand the differences they were observing in their child ("At first, I didn't fully grasp the significant of these signs"), which is consistent with [<reflink idref="bib30" id="ref50">30</reflink>] findings that prior to diagnosis, Uzbek parents knew little about the signs of autism. It was noted that the <emph>doctor helped label the parent concerns</emph> offering the mothers language ("autism") to describe and make sense of the differences they observed in their child's development:</p> <p>During this time, I didn't suspect autism as a possibility, as I had only seen it once in my life, while visiting America. However, when I expressed concerns about my child's lack of speech and difficulty with attention, the pediatrician explained that these were signs to watch for in a child, and she referred me for further assessment.</p> <p>As the mothers described the diagnostic process, they referred to various <emph>assessment techniques</emph> that medical professionals administered to inform the diagnosis. This included "assessments like the M-CHAT," "genetic testing," an "ultrasound," and parent interviews ("[The therapist] asked if my child would turn the lights on and off, to which I answered no. In addition, she inquired about any aggression during cartoon watching"). The Modified Checklist for Autism in Toddlers ([M-CHAT]; [<reflink idref="bib26" id="ref51">26</reflink>]) is a popular tool used in autism assessments worldwide ([<reflink idref="bib2" id="ref52">2</reflink>]), likely due to its availability in 82 languages and feasible administration (i.e., 20 close-ended questions). Whereas, in comparison, the gold standard for autism diagnosis (Autism Diagnostic Observation Schedule, Second Edition; [<reflink idref="bib16" id="ref53">16</reflink>]) is available in nine languages, none of which are regularly used within Central Asia.</p> <p>Interviewed mothers recounted the difficulties they experienced while navigating the assessment and diagnostic process for their child. One mother pointed to the <emph>delayed process</emph> explaining "it took around 4 and a half years to obtain the diagnosis." This critique is surprisingly similar to the delays in autism diagnoses prevalent in Western countries, with one study reporting approximately 3 and a half years of time between when the parent first contacts a medical practitioner for support and obtaining an official autism diagnosis ([<reflink idref="bib18" id="ref54">18</reflink>]).</p> <p>However, a unique challenge facing parents seeking an autism diagnosis for their child in Uzbekistan is the <emph>lack of trained professionals</emph> with autism expertise. In fact, three mothers commented on this significant issue, with one remarking "We need well-trained and motivated occupational therapists, not undereducated specialists." Another mother went as far to explain that the medical professionals not only lack expertise but are also ill informed, noting "Many people have incorrect beliefs that stem from inaccurate information provided by professors, doctors, and others." These findings are supported by [<reflink idref="bib24" id="ref55">24</reflink>] who reported that lack of knowledge of autism in Uzbekistan can impact diagnosis and treatment. They are also similar to findings from other Central Asian countries regarding lack of health and educational services and trained professionals to provide those services ([<reflink idref="bib4" id="ref56">4</reflink>]; [<reflink idref="bib13" id="ref57">13</reflink>]). [<reflink idref="bib6" id="ref58">6</reflink>] also recognize that availability of trained professionals and services are prevalent in many low- and middle-income countries. Thus, this finding is not surprising.</p> <p>One mother noted that practitioners are underutilizing an important resource, the parent. This mother explained that <emph>parents have important information to share</emph>, and often hold knowledge about their child and autism in general that can greatly support the assessment and diagnostic process. As this mother explains, "It's crucial to listen to and respect the expertise of parents and professionals who are familiar with the specific needs and strengths of individuals with autism." This is supported by [<reflink idref="bib18" id="ref59">18</reflink>] who posit that parents may be more accurate than doctors in identifying early symptoms of autism in their children. Accounting for parents' early concerns may be especially important in countries such as Uzbekistan where medical practitioners often lack autism knowledge and expertise.</p> <p>The inexperience of medical practitioners personally impacted one mother who explained that it wasn't until she met with a pediatrician in Russia that she realized her child was prescribed inappropriate medication. This supports [<reflink idref="bib18" id="ref60">18</reflink>] who in their global scoping review, identify lack of expertise in ASD diagnosis among consulted health care practitioners and misdiagnosis or need for further referral as two of the most common barriers of timely autism diagnosis. Indeed, <emph>visiting multiple doctors</emph> prior to obtaining an autism diagnosis was described by two of the mothers. Mothers mentioned taking their child to see various practitioners, including a pediatrician, a neurologist, and a psychotherapist. One mother mentioned traveling to Tashkent and Russia to obtain a diagnosis for her child. This echoes findings in Tajikistan, another Central Asia country, where families who can afford to do so will travel to other countries to obtain a diagnosis and services ([<reflink idref="bib21" id="ref61">21</reflink>]). Indeed, [<reflink idref="bib6" id="ref62">6</reflink>] noted that the availability, geographical accessibility, and affordability of obtaining services were all noted as important cultural factors that can influence whether a parent seeks a diagnosis of autism for their child.</p> <hd id="AN0193276616-15">Limitations and Future Research</hd> <p>There are some limitations to the current research study. First, there were only five participants who actively participated in the interview. Furthermore, participants were selected for this study particularly because they were particularly knowledgeable and active in seeking services and supports for their child with autism in Uzbekistan. Therefore, this sample should not be considered representative of the general population of families of a person with autism. Additional research should be conducted with larger samples—specifically, families who are not currently enrolled in a support group and may not be as informed about autism to gain a more accurate representation of the experiences and opinions of the larger population. Furthermore, this study did not include autistic or neurodivergent perspectives. In the future, researchers should look to interview autistic people to better understand their own lived experiences in Uzbekistan. Alternatively, autistic or neurodivergent researchers could be involved in the research process as an interviewer.</p> <p>A focus group was selected to promote positive interaction and provide support to discuss a difficult topic. However, there may have been potential participants who would have been more comfortable interacting in a one-on-one interview. Future research should offer the choice of individual or focus group interviews. Similarly, the study was conducted remotely via Zoom. Although the participant pool was selected from individuals who regularly attend support group sessions via Zoom, this does potentially limit the sample. There may have been interested parties who were unable to attend the interview sessions conducted on Zoom, particularly those in areas in which internet access and Wi-Fi are unavailable or unreliable. Future research include having the option to complete the interviews in a face-to-face modality if preferred.</p> <hd id="AN0193276616-16">Implications and Conclusion</hd> <p>This study sought to explore the lived experiences of mothers raising children with autism in Uzbekistan. It contributes to the limited research base regarding autism in underrepresented areas of the world such as Central Asia ([<reflink idref="bib33" id="ref63">33</reflink>]) and Uzbekistan specifically. Investigating autism knowledge from the perspective of community members and key stakeholders can serve as an important proxy toward understanding the cultural factors that may likely shape the lived experiences of people with autism and their families. This information is necessary for practitioners to consider as they reflect upon whether the supports and interventions they implement are culturally sensitive. The findings from the current study highlight the influence of several contextual factors uniquely distinct to Uzbekistan, which are important for practitioners to understand when offering support to Uzbek families. These are highlighted in further detail below.</p> <p>First, the findings from the current study suggest a firm understanding of autism among mothers of children with autism. Their understanding of this topic is likely deeper than the larger community, even compared with other key stakeholders, such as the practitioners who were noted by the mothers to spread misinformation related to autism. It is likely that the mothers in this study are better informed about autism in comparison to the larger Uzbek population given their vested interest in the topic and their experience in the support group. However, it is unclear whether this finding would generalize to all mothers of children with autism in Uzbekistan, including mothers who are not actively participating in support groups for parents of children with autism. Regardless, policy and efforts to support building the Uzbek community's awareness and understanding of autism is needed ([<reflink idref="bib25" id="ref64">25</reflink>]). As a model, Uzbek leaders may look to another culturally similar country, Tajikistan, where a group of parents founded IRODA. This organization is supported by governmental and private organizations, and it is the only autism-focused school and center for autism. IRODA has become a leading organization for supporting children with autism and their families and increasing awareness of autism in their country ([<reflink idref="bib13" id="ref65">13</reflink>]).</p> <p>Second, the diagnostic process must be improved. Findings in this study indicate that obtaining a diagnosis was a long and challenging process. This is supported by [<reflink idref="bib18" id="ref66">18</reflink>] who found participants waited inordinate amounts of time and were required to see multiple medical professionals before obtaining a proper diagnosis. These delays in diagnosis are problematic in that they are correlated with decreased parental satisfaction and results in a delay of obtaining services, particularly crucial early intervention services ([<reflink idref="bib18" id="ref67">18</reflink>]). Therefore, it is imperative that families have access to appropriately trained professionals who can reliably and promptly provide an accurate diagnosis.</p> <p>There also is a clear need for a wider range of assessment tools to support the diagnostic process. This is evident when considering that the M-CHAT—the only assessment tool noted by participants to be used within their child's diagnostic process—was designed as a screening tool and was not intended to be the sole measure used to inform a diagnosis of autism. Although no studies to date have evaluated the psychometric properties of the M-CHAT with individuals located within Central Asia, several studies have supported its use as a valid and reliable screening tool with populations around the world, including individuals located across the Middle East ([<reflink idref="bib7" id="ref68">7</reflink>]). However, other studies have pointed to the low specificity and positive predictive values resulting in high false positive rates when the scale has been used with American children from ethnically diverse and low socioeconomic backgrounds ([<reflink idref="bib10" id="ref69">10</reflink>]; [<reflink idref="bib12" id="ref70">12</reflink>]; [<reflink idref="bib27" id="ref71">27</reflink>]). Until a wider range of culturally sensitive and psychometrically sound diagnostic tools that are linguistically accessible to practitioners around the world are available, practitioners would benefit from collaborating with parents who likely have important information to share during the diagnostic process.</p> <p>In summary, in line with the [<reflink idref="bib6" id="ref72">6</reflink>] framework, findings from this project offer several suggestions regarding new insights and specific policy changes. First, it is important to consider ways in which the availability, geographical accessibility, and affordability of autism services may be improved to support families seeking support for their children with autism. Furthermore, the diagnostic process is significantly influenced by culture and thus, practitioners must have a firm understanding of the way cultural beliefs may shape a parent's attitude and understanding of their child's autism. Not only may the characteristics of autism identified in Western countries appear different than those observed by parents in other regions of the world, but it is also possible that religious beliefs may influence their understanding of the causes of autism.</p> <ref id="AN0193276616-17"> <title> Footnotes </title> <blist> <bibl id="bib1" idref="ref32" type="bt">1</bibl> <bibtext> The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.</bibtext> </blist> <blist> <bibl id="bib2" idref="ref52" type="bt">2</bibl> <bibtext> The author(s) received no financial support for the research, authorship, and/or publication of this article.</bibtext> </blist> <blist> <bibl id="bib3" idref="ref45" type="bt">3</bibl> <bibtext> Kristie Asaro-Saddler</bibtext> </blist> <blist> <bibtext>Graph https://orcid.org/0000-0003-2247-7419</bibtext> </blist> <blist> <bibl id="bib4" idref="ref16" type="bt">4</bibl> <bibtext> Editor-in-Charge: Rob Pennington</bibtext> </blist> <blist> <bibl id="bib5" idref="ref6" type="bt">5</bibl> <bibtext> The current literature examining autism-related language preference has been conducted with participants from Western-conforming countries ([11]). 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Her research interests primarily focus on strategies to support neurodivergent and autistic students in schools, and exploring the lived experiences of neurodivergent people and their families in underrepresented areas of the world.</p> <p>Dr. Narmene Hamsho is an assistant professor within the School Psychology program at Fairleigh Dickinson University's School of Psychology and Counseling. Her research is focused on reducing academic opportunity gaps and improving the schooling experiences of neurodivergent youth and their families around the world.</p> <p>Dr. Mohinur Uzoqova graduated from California School of Professional Psychology at Alliant International University with a doctorate in clinical psychology. Her research focuses on understanding parenting stress among caregivers of children with autism spectrum disorders in Uzbekistan.</p> <p>Hedayat Ghazali is a doctoral candidate in educational psychology and methodology at the University at Albany, whose research addresses the emotional experiences and psychological well-being of neurodivergent youth, specifically those with autism spectrum disorder and their families worldwide.</p> </aug> <nolink nlid="nl1" bibid="bib22" firstref="ref2"></nolink> <nolink nlid="nl2" bibid="bib25" firstref="ref3"></nolink> <nolink nlid="nl3" bibid="bib33" firstref="ref4"></nolink> <nolink nlid="nl4" bibid="bib31" firstref="ref5"></nolink> <nolink nlid="nl5" bibid="bib15" firstref="ref7"></nolink> <nolink nlid="nl6" bibid="bib29" firstref="ref8"></nolink> <nolink nlid="nl7" bibid="bib28" firstref="ref10"></nolink> <nolink nlid="nl8" bibid="bib13" firstref="ref13"></nolink> <nolink nlid="nl9" bibid="bib32" firstref="ref14"></nolink> <nolink nlid="nl10" bibid="bib24" firstref="ref15"></nolink> <nolink nlid="nl11" bibid="bib30" firstref="ref21"></nolink> <nolink nlid="nl12" bibid="bib18" firstref="ref23"></nolink> <nolink nlid="nl13" bibid="bib19" firstref="ref30"></nolink> <nolink nlid="nl14" bibid="bib23" firstref="ref31"></nolink> <nolink nlid="nl15" bibid="bib17" firstref="ref34"></nolink> <nolink nlid="nl16" bibid="bib20" firstref="ref36"></nolink> <nolink nlid="nl17" bibid="bib14" firstref="ref38"></nolink> <nolink nlid="nl18" bibid="bib26" firstref="ref51"></nolink> <nolink nlid="nl19" bibid="bib16" firstref="ref53"></nolink> <nolink nlid="nl20" bibid="bib21" firstref="ref61"></nolink> <nolink nlid="nl21" bibid="bib10" firstref="ref69"></nolink> <nolink nlid="nl22" bibid="bib12" firstref="ref70"></nolink> <nolink nlid="nl23" bibid="bib27" firstref="ref71"></nolink>
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  Label: Title
  Group: Ti
  Data: Understanding of Autism and the Diagnostic Process in Uzbekistan: Mothers' Perspectives
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  Label: Language
  Group: Lang
  Data: English
– Name: Author
  Label: Authors
  Group: Au
  Data: <searchLink fieldCode="AR" term="%22Kristie+Asaro-Saddler%22">Kristie Asaro-Saddler</searchLink> (ORCID <externalLink term="https://orcid.org/0000-0003-2247-7419">0000-0003-2247-7419</externalLink>)<br /><searchLink fieldCode="AR" term="%22Narmene+Hamsho%22">Narmene Hamsho</searchLink><br /><searchLink fieldCode="AR" term="%22Mohinur+Uzoqova%22">Mohinur Uzoqova</searchLink><br /><searchLink fieldCode="AR" term="%22Hedayat+Ghazali%22">Hedayat Ghazali</searchLink>
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  Label: Source
  Group: Src
  Data: <searchLink fieldCode="SO" term="%22Research+and+Practice+for+Persons+with+Severe+Disabilities%22"><i>Research and Practice for Persons with Severe Disabilities</i></searchLink>. 2026 51(2):79-93.
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  Label: Availability
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  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
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  Label: Peer Reviewed
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  Data: Y
– Name: Pages
  Label: Page Count
  Group: Src
  Data: 15
– Name: DatePubCY
  Label: Publication Date
  Group: Date
  Data: 2026
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  Label: Document Type
  Group: TypDoc
  Data: Journal Articles<br />Reports - Research
– Name: Subject
  Label: Descriptors
  Group: Su
  Data: <searchLink fieldCode="DE" term="%22Foreign+Countries%22">Foreign Countries</searchLink><br /><searchLink fieldCode="DE" term="%22Autism+Spectrum+Disorders%22">Autism Spectrum Disorders</searchLink><br /><searchLink fieldCode="DE" term="%22Parent+Attitudes%22">Parent Attitudes</searchLink><br /><searchLink fieldCode="DE" term="%22Mothers%22">Mothers</searchLink><br /><searchLink fieldCode="DE" term="%22Knowledge+Level%22">Knowledge Level</searchLink><br /><searchLink fieldCode="DE" term="%22Clinical+Diagnosis%22">Clinical Diagnosis</searchLink><br /><searchLink fieldCode="DE" term="%22Misconceptions%22">Misconceptions</searchLink><br /><searchLink fieldCode="DE" term="%22Disability+Identification%22">Disability Identification</searchLink><br /><searchLink fieldCode="DE" term="%22Barriers%22">Barriers</searchLink><br /><searchLink fieldCode="DE" term="%22Cultural+Influences%22">Cultural Influences</searchLink>
– Name: Subject
  Label: Geographic Terms
  Group: Su
  Data: <searchLink fieldCode="DE" term="%22Uzbekistan%22">Uzbekistan</searchLink>
– Name: DOI
  Label: DOI
  Group: ID
  Data: 10.1177/15407969251343493
– Name: ISSN
  Label: ISSN
  Group: ISSN
  Data: 1540-7969<br />2169-2408
– Name: Abstract
  Label: Abstract
  Group: Ab
  Data: Although much is known about autism worldwide, it is not well understood in many non-Western communities. The purpose of this study was to add to the limited database on autism in underrepresented countries by exploring Uzbek mothers' understanding of autism and their perceptions of their child's assessment and diagnostic process. Seven mothers in Uzbekistan participated in a semistructured, open-ended focus group interview conducted remotely via Zoom. Data were analyzed using thematic analysis. Findings revealed that mothers had a good understanding of the causes of autism, though some still lacked knowledge and believed in theories such as vaccines, and that mothers described a long and difficult identification process, highlighted by a lack of trained professionals and services in Uzbekistan. The findings highlight the influence of several contextual factors uniquely distinct to Uzbekistan that would be important to consider for practitioners and future efforts designed to support this population.
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  Data: 2026
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  Data: EJ1504057
PLink https://search.ebscohost.com/login.aspx?direct=true&site=eds-live&db=eric&AN=EJ1504057
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        Value: 10.1177/15407969251343493
    Languages:
      – Text: English
    PhysicalDescription:
      Pagination:
        PageCount: 15
        StartPage: 79
    Subjects:
      – SubjectFull: Foreign Countries
        Type: general
      – SubjectFull: Autism Spectrum Disorders
        Type: general
      – SubjectFull: Parent Attitudes
        Type: general
      – SubjectFull: Mothers
        Type: general
      – SubjectFull: Knowledge Level
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      – SubjectFull: Clinical Diagnosis
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      – SubjectFull: Misconceptions
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      – SubjectFull: Disability Identification
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      – SubjectFull: Barriers
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      – SubjectFull: Cultural Influences
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      – SubjectFull: Uzbekistan
        Type: general
    Titles:
      – TitleFull: Understanding of Autism and the Diagnostic Process in Uzbekistan: Mothers' Perspectives
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