“There is nothing”—Exploring diagnostic and service access for autistic individuals in Uruguay: A qualitative study

Abstract

Due to the higher autism research presence of higher-income countries, the known social and cultural experiences of families raising a child with autism are centered on their realities. This narrative overlooks the experiences of many families who do not fit this archetype, such as those residing in low- and middle-income countries, who are particularly challenged by the limited availability of trained professionals and barriers to accessing diagnosis and evidence-based treatments. That is the case in Latin American countries, such as Uruguay, where the present project transpires. By utilizing a Theory of Change framework, specifically developed to be used in low- and middle-income countries, the present study explores diagnostic and service barriers in Uruguay. The study included semi-structured interviews with caregivers of autistic individuals and key informants residing in Uruguay. Participants were selected using a purposive sample technique. Data analysis consisted of reflexive thematic analysis. Salient themes consisted of multiple barriers to diagnostic and service access due to a multistep process, limited awareness of autism characteristics, a hesitancy to provide a diagnosis, and few professionals who specialize in autism. For those residing outside the capital, additional difficulties were experienced.

Lay Abstract

Countries with higher monetary means to conduct research are able to have not only better knowledge of the realities of autistic individuals and their families but also better access to diagnostic and intervention services. In countries with lower income, there is limited understanding of autistic experiences and also issues with access to services due to multiple reasons, like services only being accessible in certain regions, few trained professionals, and long waitlists. This study seeks to understand possible diagnostic and service barriers experienced by autistic individuals residing in Uruguay. To understand the local realities, parents and specialists working with autistic individuals were interviewed, and the information gathered was analyzed by finding patterns that were used to form themes that included the shared experiences among participants. Some of the themes that were identified included reports of difficulties in accessing diagnosis and interventions, either because there were many steps needed to guarantee these services or because there was a limited awareness of autism spectrum disorder and its characteristics by providers, which resulted in a hesitation to diagnose. Also, participants described very few professionals who specialize in autism spectrum disorder. For those residing outside the capital, additional difficulties were experienced.

Introduction

There is a worldwide imbalance in autism spectrum disorder (ASD) (hereafter referred to as autism) experiences (Talantseva et al., 2023). For instance, autism research is primarily centered in high-income countries, such as the United States (Talantseva et al., 2023). Despite the majority of individuals with neurodevelopmental concerns residing in low- and middle-income countries (LMIC), research continues to lack their representation (Divan et al., 2024). This is not surprising when considering disparities in research budgets. For example, the allotted research expenditure in Europe and North America is three times that available in Latin American and Central American countries (The World Bank, 2020b). This lack of representational knowledge requires the scientific community to think globally to ensure research results apply to those from varied backgrounds (de Vries, 2016) since limited understanding misses the caveats of intersectionality in which race, gender, nationality, and other factors impact the experience of disability (Mallipeddi & VanDaalen, 2022). In addition, a lack of localized knowledge prevents countries from properly assessing the public health burden of autism (e.g. the impact a condition has on a population), identifying the necessary allocation of budgets where it is most needed, and better identifying potential risk factors (Talantseva et al., 2023).

Disparities are also observed in diagnostic and service access. For instance, despite increased prevalence of autism worldwide, which has helped improve its understanding and community awareness (Centers for Disease Control and Prevention, 2024; Corden et al., 2022; Russell et al., 2022; Salari et al., 2022; Wei et al., 2022; Zeidan et al., 2022), diagnosis rates continue to be more prevalent in higher-income countries (Yang et al., 2023). Yet, these differences are more likely due to higher-income countries counting on better access to healthcare resources and epidemiological data (Talantseva et al., 2023; Yang et al., 2023). Another issue is barriers to evidence-based interventions, which are of limited access, particularly in LMIC (Montenegro et al., 2022). This is problematic when one considers that early interventions are crucial for enhancing multiple areas of development (Franz et al., 2022; Maksimović et al., 2023).

Autism diagnosis and interventions in lower-income countries

Limited autism knowledge also contributes to misinformation and misattribution, such as attributing the causes of autism to religious or supernatural factors, which perpetuates stigma and discrimination (Chen et al., 2021). These misconceptions reduce help-seeking behaviors and create significant barriers to accessing diagnoses and interventions (Divan et al., 2021; Kouznetsov & Jelastopulu, 2023; Yu et al., 2020). In addition, a lack of awareness of autism characteristics and diagnostic criteria also hinders the identification of autism symptomatology since it prevents caregivers and service providers from noticing developmental concerns (Divan et al., 2021). Compounding these challenges is the fact that most diagnostic tools are dev-eloped and validated in high-income countries, often without considering cultural diversity (Divan et al., 2021). Consequently, these tools are not always applicable in LMIC, where they fail to align with local norms and values, further obstructing early detection efforts (Divan et al., 2021; Salari et al., 2022). This lack of culturally sensitive tools, combined with limited awareness, leads to detection gaps in LMICs, where clinicians often refrain from using diagnostic instruments in evaluations due to their limited relevance or accessibility (Salari et al., 2022; Zavaleta-Ramírez et al., 2024).

In marginalized communities and lower-income countries, accessibility to interventions is an issue due to systemic barriers such as a limited number of autism-trained professionals, fragmented infrastructures, high cost of services, long traveling distances, and so on (Masri et al., 2023; McConkey, 2022; Silvestre Paula et al., 2020). Moreover, services and interventions are often concentrated in metropolitan areas, resulting in lengthier waitlists for diagnosis and treatment (Divan et al., 2021; Montenegro et al., 2022). These systemic barriers significantly impede the timely identification and support of individuals with ASD.

Diagnosis and interventions in Uruguay

It is well known the importance of a prompt diagnosis to access the benefits associated with children receiving early interventions (Centers for Disease Control and Prevention, 2022; Dawson, 2008; National Institute of Child Health and Human Development, 2021). However, in Uruguay, the country where current research takes place, autism is met with a 19- to 21-month diagnostic delay (Alvarez et al., 2015; Montiel-Nava et al., 2024; Silvestre Paula et al., 2020). Part of the problem is the infrastructure and monetary limitations, since despite being classified as a high-income country, Uruguay faces systemic challenges, including limited healthcare infrastructure and underfunding (e.g. health expenditure per capita is significantly lower than other high-income countries, The World Bank, 2019; The World Bank, 2020a). This underperformance is problematic since much of that expenditure could be dedicated to improving health services for those individuals with autism (Estenssoro et al., 2016).

Another key issue is the uneven distribution of services and practitioners, concentrated in the capital, Montevideo, despite the city comprising only 0.3% of the country’s land area and where only 42.5% of the population resides (Caffarelli & Sosa Pisano, 2022; Centro Hospitalario Pereira Rossell, n.d.; Instituto Nacional de Estadisticas, 1998; Ministerio de Salud Pública, 2019). While the 2017 Mental Health Law (No. 19.529) aimed to address these systemic issues by promoting prevention and rehabilitation, its implementation has been hindered by inadequate budgets and fragmented healthcare systems (Ley de Salud Mental N° 19529§1 2, 2017; Scelza & Pérez, 2022).This distribution gap impacts individuals with limited economic resources, particularly those residing outside Uruguay’s capital, as they face additional logistic challenges such as added time off work and the extra economic impact due to transportation costs (e.g. cost of gas, bus fare; Antezana et al., 2017; Oficina de Planeamiento y Presupuesto, 2016). Even in its capital, many healthcare providers report working multiple jobs and long hours, which compromises the quality of care provided. A recent study reported that from a sample of over 120 psychiatrists, 81% indicated working multiple jobs to make ends meet, with 62% working more than 8 h daily (Caffarelli & Sosa Pisano, 2022). When exploring the realities of autistic ¹ individuals in Uruguay, one sees multiple challenges when navigating pathways to care. A study by Montiel-Nava et al. (2020) showed that 70.5% of its sample experienced service barriers. This same data showed that autistic individuals in Uruguay received psychomotor services at a higher rate than the rest of Latin American countries, partially because these are the services that are more likely to be covered by the healthcare system (Garrido, 2021). It is important to note that psychomotor intervention, which should not to be confused with physical therapy, lacks strong empirical support for use with autistic individuals and is characterized by short duration and low intensity (Frazão et al., 2021; Lee McIntyre & Zemantic, 2017; National Autism Center, 2015). Further complicating the service landscape is Uruguay’s tendency to prioritize intensive care and hospitalization for mental health concerns, leaving fewer resources available for community-based interventions and multidisciplinary care (Romano, 2022).

Despite growing recognition of challenges in autism diagnosis and service provision, limited research has examined these issues in the Latin American context, particularly in Uruguay. Existing studies predominantly focus on high-income countries, leaving gaps in understanding how diagnostic practices and interventions translate to regions with constrained resources and unique sociocultural contexts. Addressing these gaps is essential, as early and accurate diagnosis is critical for accessing evidence-based interventions that improve developmental outcomes and promote equity in autism care. The aim of this study is to investigate the barriers to autism diagnosis and service accessibility in Uruguay, focusing on systemic challenges and their impact on underserved populations. Using Divan et al.’s (2021) Theory of Change (TOC) framework, this study seeks to identify key diagnostic and service gaps within Uruguay’s healthcare infrastructure (Figure 1). By exploring these barriers, the study aims to provide actionable recommendations to enhance diagnostic pathways, improve access to evidence-based interventions, and inform context-specific strategies that address the unique sociocultural and resource constraints of Uruguay.

Figure 1.

Divan et al.’s (2021) domains used as umbrella categories to identify codes and themes.

Methods

Sample

Study participants were selected using a purposive sample technique (Palinkas et al., 2015), which included 12 caregivers of autistic individuals and three key informants residing in Uruguay. Uruguay is a South American country with a little over 3 million inhabitants, of which approximately 42.5% live in its capital, Montevideo (Ministerio de Salud Pública, 2019), with the remaining population living in the interior, which consists of 18 departmentos (departments; Britannica, 2023). In the current sample of parents, most lived in the interior (all regions of Uruguay that are not the capital city, 66.7%, n = 8), while the remaining lived in Montevideo (capital city, n = 4, 33.3%). All participants were mothers (n = 12, 100%), the majority of whom completed primary (n = 4, 33.3%) or some or all high school (n = 6, 50%). Most mothers were married or had a live-in partner (n = 9, 75%), with multiple not working (n = 5, 41.7%) or working part-time (n = 4, 33.3%). Table 1 shows the information on parents. Regarding children’s characteristics, the majority had no co-occurring medical condition (n = 8, 66.7%), and those with co-occurring conditions included attention-deficit hyperactivity disorder (n = 1), blindness (n = 1), sleep disorder (n = 1), and left anacusis (n = 1). No further information was available concerning the ASD diagnosis, since, as will be reported in section “Results,” parents interviewed reported a diagnostic process that lacked any additional insight (e.g. level of support or severity of symptoms). Children’s average age at the time of interviews was 7.4 years old (SD = 4.3) or 89 months (SD = 51.8). As per caregivers, the mean age of first developmental concerns was 1.79 years old (SD = 1.5) or 21.5 months (SD = 2.5), and the mean age of diagnosis was 3.5 years old (SD = 1.4) or 42 months (SD = 18.5). Inclusion criteria for caregivers included (1) being at least 18 years old, (2) being a primary caregiver of an autistic child [diagnosed with autism by a professional], (3) the child was receiving services related to their autism condition, and (4) caregiver and child lived in Uruguay at the time of the interviews.

Table 1.

Parents’ pseudonyms and demographic information.

Gender	Role	Marital status	Employment	Schooling	Region
Female	Mother	Live-in partner	Unemployed	Some high school	Interior
Female	Mother	Live-in partner	Unemployed	Some high school	Interior
Female	Mother	Single	Unemployed	Primary	Interior
Female	Mother	Married	Part time	Primary	Interior
Female	Mother	Married	Full time	Primary	Interior
Female	Mother	Separated	Part time	Highschool	Montevideo
Female	Mother	Married	Part time	Highschool	Montevideo
Female	Mother	Live-in partner	Part time	Some high school	Interior
Female	Mother	Married	Unemployed	Bachelor’s degree	Interior
Female	Mother	Single	Unemployed	Some high school	Interior
Female	Mother	Live-in partner	Full time	Some high school	Montevideo
Female	Mother	Married	Full time	Graduate degree	Montevideo

Key informants were chosen to represent different types of settings (non-profit, public, and private) to acquire a multidisciplinary understanding of autism experiences. They consisted of (1) a pediatric psychiatrist, (2) an early intervention specialist, and (3) the president of a parent organization and institution that provides services to children with autism and their families. For key informants, inclusion criteria included (1) being over 18 and (2) having specialized training working with autistic populations.

Procedure and participatory research

Utilizing the main topics of the 100-Day Kit for Young Children (Autism Speaks, 2020), the main researcher drafted an initial semi-structured questionnaire. Following the questionnaire’s development, a parent of an autistic child and president of a parent organization in Uruguay, a child psychologist, and a psychiatrist, both specializing in autism, provided feedback on the appropriateness of the interview questions and helped narrow down the questions included. For key informants, the questionnaire was the same as the one utilized with caregivers; however, they were asked to focus on their observations when working with caregivers (e.g. What difficulties do you see caregivers experiencing when getting an autism diagnosis?).

After approval was provided by the Institutional Review Board of the principal investigator’s (PI) institution, data collection began in Uruguay in June 2022. The PI met with participants in multiple settings (e.g. locally or virtually) to accommodate their needs. All interviews were done in Spanish, by the main researcher, who is a native speaker. These were audio-recorded and lasted between 30 and 65 minutes for caregivers and key informants. In addition, field notes on impressions and thoughts were made by PI, particularly for topics participants emphasized, which helped better understand transcriptions and audio recordings.

Data analysis

The present study utilizes reflexive thematic analysis (RTA) with a critical realistic paradigm within which the researcher aimed to understand and report participants’ realities and how their perspectives and knowledge shaped these (Braun & Clarke, 2022). RTA aligns with Big Q research (entirely qualitative) since it embodies a qualitative paradigm using qualitative tools and techniques (Braun & Clarke, 2022). A qualitative approach was more suited to understand situated knowledge and thus generate a more contextualized understanding (Braun & Clarke, 2022). RTA permitted for a deductive orientation (theory-driven) to coding while also allowing for the identification of semantic (what the data explicitly says) and latent (underlying ideas and assumptions) meaning in addition to descriptive and interpretative accounts of caregivers’ reports (Braun & Clarke, 2022). Since RTA is theoretically flexible, meaning that it can be used with a range of theoretical frameworks, it thus allowed the utilization of the TOC framework to generate the codes and themes.

For data analysis, six phases were followed: (1) familiarization with the data set (transcribing, reading, and rereading the data), (2) coding, (3) generation of initial themes (patterned meaning), (4) developing and reviewing themes, (5) refining, defining, and naming the themes, and finally, (6) formal analytic writing in which the data are weaved together to form a consistent story (Braun & Clarke, 2022). To familiarize with the local realities and the context of the data being gathered, the PI first moved to Uruguay not only to ensure data collection was being done locally but also to attend community events (e.g. parent association meetings), which allowed the main researcher to better understand the autistic experiences in Uruguay, know the appropriate language to use, and increased awareness of key cultural components within the autistic community for better engagement and rapport with participants. Once data gathering took place, interviews were transcribed using an automated transcription system (i.e. Sonix), after which all transcriptions generated were again revised while listening to the audio recordings to ensure accuracy (e.g. proper punctuation and conveying the appropriate meaning of what participants were saying). For coding, it is important to note that the PI conducted all the coding since this is good practice in RTA due to the involved and reflexive role the researcher must fulfill (Braun & Clarke, 2022; Byrne, 2022). Coding was done with Thematic Analysis Coding Management Macro v2.0 (Babbage & Terry, 2023), which allowed the identification of codes in a Word document containing the transcripts and then transferring these codes to an Excel document. Codes were identified using domains identified by Divan et al. (2021) as umbrella classifications (see Figure 2). After codes were categorized within these classifications, salient themes were identified within these umbrella terms. These themes were revised and changed by the main researcher as the process of refining, defining, and naming themes occurred. These themes were revised by a co-author to ensure appropriateness and proper capturing of code patterns.

Figure 2.

Map of domains (e.g. Barriers to Services; Barriers to Detection and Diagnosis; Inadequate Availability) as identified by Divan et al. (2021) used as umbrella categories for theme identification which can be identified in the outer regions.

Researcher as an instrument and bracketing bias

The PI of this study was born and raised in Uruguay. Despite leaving the country at 21, her strong ties to her homeland motivated her desire to highlight the realities experienced there by autistic individuals and their families. The present project attempts to better understand pathways to care among autistic individuals in Uruguay, for which the PI moved back to the country and resided there for 2 months for data collection. Conducting the interviews with parents and key informants required her to fulfill two roles: one as an empathic listener who wants things to improve for all autistic individuals and their families and two as a researcher who wanted to be faithful to the realities being presented. As a researcher working in a lab in the United States that focuses on neurodevelopmental concerns in a setting that also experiences limited resources and barriers to accessing services, similarities in both settings allowed the main researcher to be attuned to understanding how the realities of an environment do not always match standards of care, and this information allowed her to understand and empathize with the realities being reported by caregivers in Uruguay.

Results

Domain: barriers to detection and diagnosis

Within this umbrella domain, the following themes were identified: Multistep/Confusing Process, Doctor’s Hesitancy = Diagnosis Delay, What do parents know? Not Autistic Enough, and Easy Peasy Diagnosis.

Multistep/confusing process

Before reaching a diagnosis, parents described visiting multiple medical providers, which not only delayed the process but also made it more time-consuming and exhausting for caregivers:

Here [in Uruguay] you need to go to a pediatrician so that he can refer you to the child neurologist. Without a referral from a general practitioner, you don’t have permission to go to that provider.

For families in the interior, in addition to seeing multiple healthcare providers, the diagnosis had the additional hurdle of travel distance to the capital, Montevideo. Even then, for parents in the interior, traveling to the capital did not always guarantee answers either:

Here in the interior, there are none [specialized diagnosticians]. I had to take him to Montevideo and even in Montevideo, I had to visit many to find the diagnosing doctor.

Key informants

In addition to this multistep, multidisciplinary process, the pediatric psychiatrist emphasized the time it takes for the referrals to go through to find the specialist that will finally provide the needed diagnosis:

Waiting to get to the specialist takes time and delays access to services. It takes months to see the child neurologist to then being able to access interventions. That’s the first challenge.

Doctor’s hesitancy = diagnosis delay

Many parents experienced hesitancy (e.g. not wanting to provide the diagnosis) from healthcare providers when voicing concerns about their child’s development, leading to delays in diagnosis:

All the doctors, from psychologists to psychomotor and speech therapists, all of them, didn’t dare to give a diagnosis because he was so young. They never wanted to give it a name. They didn’t dare to tell me, didn’t give me the name.

Key informants

The president of a parent organization also described this hesitancy for early identification, often at the hands of pediatricians:

The first person who has to notice something is the pediatrician who frequently denies it or doesn’t dare because the child is very young, because they want to see them several times, they don’t want to go for it and say it. But the pediatrician should be the one, who when they see something, recommends taking the child to see a psychiatrist or a child neurologist.

What do parents know?

Within this theme, parents reported feeling ignored by those professionals that could have diagnosed their child even when corroborating evidence was being presented:

In the preschool, the teacher told me that it could be autism. I took him to a child neurologist, and he told me that my son did not have autism. The school had made a note stating what they saw in him but the neurologist told me that what the teacher had said was nonsense, that he didn’t have autism, and not to worry.

Not autistic enough

Individuals without the traditionally expected autism symptomatology (e.g. poorly modulated eye contact, insistence on sameness, repetitive behaviors) can be misdiagnosed or diagnosed later (Hus & Segal, 2021; Pearson, 2021), which was also experienced by parents in our sample:

The pediatrician said it could be a developmental deviation because my son had eye contact and facial expressions.

However, one can see that due to power imbalances, having a healthcare provider brush concerns aside resulted in a tendency of caregivers not to question and ignore the developmental issues they had been observing:

The child neurologist told me he was not autistic because he had eye contact. So, I left thinking that my son was not autistic because if a child neurologist tells you so, that’s what they studied for.

Easy peasy diagnosis

Standards of care dictate that when conducting an autism diagnosis, a comprehensive evaluation should take place to ensure appropriate treatment planning (Brian et al., 2019); however, for parents in our sample, the opposite of these standards occurred:

The child neurologist gave me a diagnosis within 15 minutes. He didn’t even observe him [son], to evaluate him, to see what the child was doing, how he played, how he handled himself. He just asked me.

Key informants

A comprehensive diagnosis that results in an integrative report is essential in Uruguay since access to evidence-based interventions that target multiple domains is not always accessible to autistic children. This leaves parents needing to target different areas of development through the available resources, as explained by the president of the parent organization. Because of this, a comprehensive diagnosis and its accompanying comprehensive report become an essential guiding tool for treatment planning:

Once an accurate evaluation is made, a treatment is put together using it as guidance. It would be ideal to have a team behind that can carry it the recommendations; however, what happens is that some things mentioned in the evaluation are carried out at home, others by the psychomotor therapist, and the speech therapist and school do the rest. Start putting together your child’s treatment in a handmade way.

Domain: barriers to services

Theme within this domain includes Hurdles to Access Services.

Hurdles to access services

In this theme, parents voiced different challenges to accessing needed healthcare services, such as medication not being available or needing to change insurance policies to social security to access services due to the high cost of services if done through private means:

My son’s psychomotor therapist was in one center, and the speech therapist was in another center. [After changing from private insurance to social security] you have to change one of those two professionals. He starts with a new person after being with somebody else for six months, because you have to choose a new center.

For parents residing in the interior of Uruguay, traveling became a grueling process, resulting in parents often having to spend more time traveling (e.g. taking different buses) than on the actual provider’s appointment:

We go during the day. It’s a five-hour trip; we lived more on the bus than [in therapy].

Domain: inadequate availability

The theme identified within this domain was: One-size-fits-all approach.

One size fits all

Most parents reported the same treatment approach being offered to their children, which frequently included a combination of psychomotor therapy and speech therapy:

He is being seen by a speech and psychomotor therapist. I wanted to take him to a psychiatrist who specializes in autism but there aren’t any in the interior. I had to take him to Montevideo and even there to find the one he has now I had to call many since there was no availability.

Key informants

It was further clarified that psychomotor and speech therapists are not always trained to work with autistic individuals. This issue is further exacerbated by the limited options available since there are no alternatives for parents seeking practitioners that specialize in autism because there are few to none:

Parent of the parent organization: There is nothing. Now, we’re using some occupational therapists that work on sensory areas, but it’s all new. There’s nothing else, and occupational therapists in Uruguay are not prepared to work on the sensory issues.

Discussion

Understanding local experiences is essential since one cannot assume that the experience of having an autistic child is the same across countries due to demographic and systemic factors that are as diverse as the manifestation of autism symptomatology. As such, the present project aimed to identify local barriers using the TOC model proposed by Divan et al. (2021).

When addressing barriers to detection, parents voiced a multistep confusing process. Since child neurologists or pediatric neurology specialists are the most likely to provide a diagnosis, parents are required first to see a pediatrician to request a referral. Oftentimes, when meeting the child neurologist, there were multiple additional requirements (e.g. “encephalogram, MRI, ultrasound”) which are not required to diagnose autism but are used to rule out other conditions. While this is commendable, as reported by a key informant, this further delayed accessibility to interventions because parents not only had to wait for their child to see the pediatric neurologist but also had to endure additional delays for the necessary tests. In the present sample, the delay from the time parents noticed developmental concerns to diagnosis received was on average 1.71 years. In the meantime, early interventions that target behavioral, social, and communication concerns could have commenced. The issue is further exacerbated for parents in the interior, where specialists are frequently unavailable, and parents have to add travel time and all that it entails (e.g. taking time off work, finding the resources to finance the trip, and so on). Diagnostic delays, as identified in the present sample in Uruguay, are common in other LMICs. For instance, a recent systematic review comparing studies from 33 low- and higher-income countries identified that diagnosis came approximately 10 months later in lower-income countries despite first developmental concerns being noticed at similar ages in both settings (Matos et al., 2022). Moreover, it is expected that autism prevalence rates in LMIC are an underestimation due to limited representation in epidemiological research and because many are diagnosed later or not diagnosed (Matos et al., 2022).

In Uruguay, delayed or underdiagnosis could be due to multiple factors. This project identified the hesitation of service providers in making diagnoses. Parents and key informants reported a fragmented diagnosis process that starts with the pediatrician not wanting to refer out due to the belief that the child is too young and thus preferring to wait to see how it plays out. Moreover, caregivers described that their concerns about developmental issues were often not taken seriously. Finally, when autistic children did not exhibit expected autism symptomatology (e.g. poorly coordinated eye contact and limited facial expressions), providers dismissed parents and assured them that their child did not have autism, thus delaying the benefits of an earlier diagnosis which include, and are not limited to, (1) normalizing parents’ concerns (Goodwin et al., 2019) and (2) allowing parents to become proactive in identifying their support system and accessing children’s treatment (Elder et al., 2020). Considering the diagnostic process, in which parents first consult with a pediatrician to then be referred out to a specialist for a diagnosis, it is thus imperative to increase mainstream service providers’ confidence and expertise to ensure autism is promptly identified and referrals are provided when needed (McConkey, 2022). Providing physicians with autism-specific training improves their knowledge and self-efficacy in caring for autistic patients and, more importantly, increases their willingness to conduct autism screening (Clarke & Fung, 2022). Parents in the present sample were hesitant to question providers despite their discomfort and doubts with the diagnostic process. Thus, part of providers’ autism-specific training should include guidance on working with parents and being in tune with their concerns and needs. For example, it is important for them to understand that caregivers are highly aware of their children’s developmental concerns and challenging behaviors and have been shown to be accurate reporters of neurodevelopmental concerns that later resulted in an autism diagnosis (Tanner & Dounavi, 2021). Furthermore, parents can notice developmental preoccupations as early as 6 months old (Tanner & Dounavi, 2021) making their reports imperative for a timely detection (Tanner & Dounavi, 2021). Thus, Uruguay needs to work on increasing healthcare and specialist’s knowledge of autism symptomatology and the heterogeneity of characteristics and, in some cases, improve bedside manners to ensure communication remains open between providers, parents, and autistic children. Along these lines, providers should strive for a collaborative approach to diagnosis that incorporates caregivers’ expertise when developing the diagnostic profile of the autistic child.

After much waiting to see the professional who diagnoses autism, parents reported that the act of diagnosing a child was fast-paced and rushed instead of being detailed and integrative of different tools (e.g. instruments, clinical observation, developmental history, and so on). For one mother, this quick and careless evaluation prompted seeking a second diagnosis, in which a more thorough evaluation was conducted. During this evaluation, multiple sources of information were gathered, and different instruments were used as suggested for diagnostic standards of care, thus showing that the means to conduct thorough assessments are available in the country; however, doctors either are unaware of said standards or overlook them. While Divan et al. (2021) mention that screening and diagnostic tools are not always validated for non-diverse populations, this should not prevent providers from listening to parents and gathering as much information as possible to draft comprehensive evaluation and treatment recommendations. As clarified by a key informant, an accurate evaluation could help identify areas of development that can be targeted with available services in Uruguay, since a thorough assessment with detailed recommendations is essential to ensure the maximization of benefits and efficacy of the limited number of services available. While in high-income countries, services offered target various areas of development (Gitimoghaddam et al., 2022) and are centralized in one location (e.g. accessed through the schools or in one center where evidence-based services are offered; Suhrheinrich et al., 2021), in Uruguay, there are few centralized settings for autism-related services. Thus, as the key informant described, parents need to attend services in different settings or work with their children at home due to the limited offering of services that target all areas of developmental concerns. Without the guidance of a comprehensive evaluation that guides parents and service providers in identifying areas of concern to focus on first, children with autism are left like in a pinball machine, hitting and missing the mark often.

Lower-income countries also experience barriers to interventions (Samadi, 2022), and Uruguay is no exception, as identified in this study, since reports in our sample indicated problems with service access. For example, only certain therapies were universally offered without consideration to the child needing said services. Participants also reported needing to change their insurance to ensure access to needed services, which meant a disruption in services already being used and also entailed disrupting already-built rapport and routine. For children with autism, healthcare-related visits are already challenging due to facing an unfamiliar setting, with multiple staff members and long waiting times, and where sensory overstimulation from excessive lighting or noise can occur (Straus et al., 2019). Preparing for these visits entails parents working with the child to ensure ample preparation to minimize the unpredictable (Straus et al., 2019). However, unpredictable aspects such as provider changes prove challenging to established routines and limit the anticipatory preparation that can be provided. This is problematic when one considers that routines, for autistic individuals, are a comfort mechanism and a significant component of their daily lives. Thus, access to healthcare must consider the importance of routines to ensure a higher quality of care.

Another issue identified was the inadequate availability of services. Most Uruguayan autistic children are offered a combination of psychomotor intervention and speech therapy. As mentioned, psychomotor intervention is not an evidence-based intervention for children with autism (National Autism Center, 2015); however, these are the services covered by the public healthcare system (Garrido, 2021). Moreover, autistic individuals are automatically assigned these services independently of their needs. Because of that, when receiving only psychomotor and speech therapies, there are missed opportunities to target other areas of development. In addition, participants in this article reported that therapists who work with those approaches are not trained and are not properly equipped to work with sensory issues that many autistic individuals experience (Passarello et al., 2022). Because of the limitations to what is being offered, a key informant pleaded to universalize intervention models that target behavioral concerns (e.g. applied behavior analysis, Maksimović et al., 2023) and to ensure autistic-specific training among providers.

Access issues were further complicated if the parent was from the interior since the parents had to spend multiple hours traveling to access a short-lasting treatment session. Rural residency and its association with later diagnosis and issues with service access have been well-documented in multiple regions of the world (Ault et al., 2021; Ghahari et al., 2022; Preece & Lessner Lištiaková, 2021). Uruguayan parents from the interior, who are more likely to experience financial hardships and unmet basic needs (Observatorio Territorio Uruguay, 2011), also need to plan on packing the meals, adding to the expenses incurred. It is thus not difficult to imagine the challenges, especially when considering the difficulty children with autism experience with accepting routine changes, insistence on sameness, and lack of flexibility (American Psychiatric Association, 2022; Sevin et al., 2015) which can make traveling long periods particularly grueling. It is thus imperative to consider their reality to better meet their needs by increasing local access to diagnosis and intervention services or increasing collaboration among different specialists seeing the child so most visits can occur within the same day.

Concluding remarks

This study has some limitations, for instance, the lack of generalization; however, it is important to know that for qualitative research, the goal is not to generalize findings but to explore and gain an in-depth understanding of the participants’ experiences and realities (Creswell & Creswell, 2017; Denzin & Lincoln, 2011). Also, as reported in this project, due to limited information provided to parents throughout the diagnostic process, the level of support or severity of impairment was not available to them. It is expected that with more overall knowledge and understanding of ASD, this information could be gathered in future studies. One notable strength of this study is that it is the first to explore the diagnosis of autism and access to services in Uruguay by interviewing different types of informants (e.g. parents and specialists). Future research could build on these findings by expanding the sample size or exploring different regions within the country to gain a broader perspective. The contributing elements identified in this article may help the Uruguayan and LMICs autism community and stakeholders to develop a more inclusive universal approach to accessing services that are better prepared to meet their needs following higher standards of care.

This study also unearthed that evidence-based interventions are not accessible for most children in Uruguay. Mainly, Uruguay needs improved accessibility to interventions that target multiple areas of development (Dawson et al., 2010; Gitimoghaddam et al., 2022) and for these to be provided through social security. Until that occurs, Divan et al. (2021) proposed parenting interventions as an alternative. These have shown strong evidence of their efficacy in different local contexts (Divan et al., 2021). Another important factor to consider is the need in Uruguay for services to match the needs of autistic individuals and families. In other words, a one-size-fits-all approach for a heterogeneous condition like autism won’t do. Interventions need to be flexible and adaptive due to autism heterogeneity (Masi et al., 2017). An alternative is to identify the core components of these interventions and combine them to tailor them to the specific needs of autistic children (Divan et al., 2021).