Exploring patterns between school perceptions, child behavior, and maternal well-being among Latina mothers of children with autism spectrum disorder (ASD)

Abstract

Research suggests that child problem behavior and poor family-school partnerships contribute to maternal stress in families of children with autism spectrum disorder (ASD). However, most extant research focuses only on White families even though Latina mothers of children with ASD experience greater systemic barriers impacting parent well-being and access to school services. Using individual interviews, this study investigates the pattern between school perceptions, child behavior, and psychological well-being among 13 Latina mothers of school-aged children with ASD. This sample was selected based on their elevated scores on the Difficult Child subscale of the Parenting Stress Index. Findings indicate that all participants reported feeling fear, frustration, worry and stress due to their child’s behavior. Specifically, participants worried about their child’s safety and expressed frustration with their child’s problem behavior. Notably, participants reported mixed responses regarding the schools’ actions to address their children’s behavior. Implications for research and practice are discussed with respect to family-school partnerships among Latina mothers.

In comparison to parents of children without disabilities or other types of disabilities, parents of children with autism spectrum disorder (ASD) experience greater stress (Hastings, 2002; Hayes and Watson 2013). Further, there is a bidirectional relation between child problem behavior (i.e. abnormal behaviors of intensity, frequency, and duration that may negatively affect an individual, Lee and Connolly 2016) and parent stress (Neece et al. 2012). For example, when a child has more problem behaviors, the parent experiences greater stress and when the parent has more stress, the child demonstrates greater problem behaviors (Hastings, 2002). In addition to being a predictor of parent stress, child problem behavior is also one of the biggest concerns in public schools (Mastropieri 2001). Given the effect of child problem behaviors on schools and children with ASD and their parents, it is critical to explore patterns with child problem behavior.

Although Latino students are the fastest-growing population in the United States, most research about families of children with ASD focuses on White families (Lopez and Magaña, 2018). This is problematic because Latino (versus White) students with ASD have worse school and post-school outcomes (Wagner et al. 2005). Such disparities may begin in early childhood as Latino children are diagnosed with ASD almost a year later than their White counterparts, preventing Latino children from accessing and benefiting from services (Center for Disease Control and Prevention 2012, Magaña et al. 2013). Further, Latina (versus White) mothers of children with ASD are more likely to experience worse psychological well-being (Magaña 2000) and greater discrimination in the school (Hughes et al. 2008); their children are also more likely to demonstrate increased ASD symptoms (Blacher et al. 2014). Yet, no research has examined how these constructs (behavior, school perceptions, and maternal stress) relate to one another. The purpose of this study was to explore the patterns among these constructs, so that culturally responsive interventions can be developed for Latina mothers of children with ASD (Cohen 2013).

Mothers of children with ASD (versus the general population) are significantly more likely to be stressed and are at a higher risk for depression (Magaña and Smith 2006). Several frameworks have been developed to address parent stress. Perhaps one of the most common frameworks is the double ABCX model (Minnes 1988) wherein stress is related to: child characteristics, parent perceptions of the child, and internal and external resources. Indeed, most extant research has focused on the relation between child characteristics and parent stress. Specifically, the bulk of research has found a strong correlation between child problem behavior and maternal stress (e.g. Neece et al. 2012, Woodman and Hauser-Cram, 2013). However, most of the research has also only focused on White families (Magaña et al. 2013). As a result, most research fails to consider cultural values that may impact maternal stress. Within the Latino culture, attitudinal familism (i.e. the belief of family closeness and the responsibility for the well-being of the entire family) is emphasized (Cauce et al., 2002). Because of familism, within Latino families, maternal stress may be more strongly correlated with child behavior as mothers are likely to feel directly responsible for the well-being of their children.

Due to systemic barriers which occlude access to educational knowledge, advocacy skills, and services, many Latino parents of children with ASD report being stressed (Geenen et al. 2003, Shapiro et al. 2004, Trainor, 2010). Also, within Latino culture, there is often a deference to professionals which may impact the family-professional partnership (Burke and Goldman 2018). Such barriers may affect the family-school partnership, including parent interactions with teachers. Also, when parents are more stressed and in worse health, they may lack the time, effort, and ability to collaborate with the school (Geenen et al. 2003, Trainor, 2010). In a sample of 104 parents of children with IDD, Wang et al. (2004) examined advocacy, family quality of life (FQoL), and stress. Parent advocacy caused stress for parents of children with IDD. Additionally, limited satisfaction with their child’s education and poor parent-school partnerships also impacted parent stress and FQoL. Notably, of the 104 participants, only 20 participants were Latino. Unfortunately, there are no studies that focus specifically on Latina mothers’ experiences in special education and their health (Rios and Burke, submitted). However, research suggests that Latina mothers prioritize their children with IDD more than their own health (Magaña and Smith 2006). Consequently, when their children have poor special education experiences, Latina mothers may have worse health.

Recently, studies have found that external resources (e.g. school experiences) contribute to stress among parents of children with disabilities, including ASD. For example, in a national survey study with mothers of children with intellectual and developmental disabilities, including ASD, Burke and Hodapp (2014), found a non-linear relation between family-school partnerships and maternal stress. Specifically, participants only demonstrated decreased stress when they had excellent partnerships with the school. Unfortunately, only a small percentage (i.e. 3.21% or n = 31) of the sample was Latina mothers. Given the fewer external resources that Latino (versus White) families have (e.g. less income, language barriers, differing cultural views between the school and the family, Blacher et al. 1997), it is possible that Latino parents would experience greater stress due to the school.

Research is needed to explore potential patterns between school perceptions, child behavior, and maternal well-being. Such research is especially needed among Latino families who face greater systemic barriers in accessing school services (Rossetti et al. 2018). Indeed, Latino families of children with ASD often report that school professionals disregard their input and relegate them to passive, listening roles (e.g. Shapiro et al. 2004). Further, most research about families of individuals with ASD focuses on young (aged 0–3) children (Volkmar et al., 2011). However, families of children with ASD are most likely to encounter problems with the school (Burke, Patton, and Lee 2016). Thus, the developmental context for this study focuses on selected Latina mothers of school-aged children with ASD with high levels of maternal stress. This study was guided by four research questions: (1) How do Latina mothers of children with ASD describe their children’s behavior? Are there any patterns with maternal stress? (2) What are the perceptions of the school among Latina mothers? (3) In consideration of how the school addresses the child’s behavior, how do Latina mothers respond to the school? (4) How does the school’s description of the child relate to maternal psychological well-being?

Method

Researcher identity

It is important to be reflexive in qualitative research. Previously, each author had experience working with Latino children with ASD (e.g. teaching Latino students with ASD). This experience served as a strength because they had prior experience working with Latina mothers of children with ASD. Another strength is that three of the four authors are Latina and native Spanish speakers. As such, they have a personal understanding of the Latino culture and the role of women in Latino families. Only one author is the parent of a child with a disability and can identify with the role of parenting. To avoid biases, the authors kept detailed field notes throughout the research process and consulted with one another regularly (Brantlinger et al. 2005). During the interviews, the interviewer remained neutral when asking questions by not comparing personal experiences with the participants. Finally, the authors listened to the interviews’ audio recordings to ensure the detailed notes were accurate and to further avoid biases.

Participants

This study included 13 Latina mothers of children with ASD enrolled in public schools who were selected from a larger sample. Specifically, the 13 mothers were selected for this study based on their high levels of maternal stress. Inclusionary criteria required participants to: be the mother of a school-aged (i.e. 5–18 years old) child with ASD; identify as Latina; have attended an individualized education program (IEP) meeting within the last year; and scored Clinically Significant in the Difficult Child subscale of the Parent Stress Index-Short Form (PSI-SF, Abidin 1990). Because mothers tend to be primary caregivers (Magaña et al. 2004), only Latina mothers were asked to participate. “Latino” was defined as people born in or having heritage related to Latin America (Comas-Diaz 2001). See Table 1.

Table 1.

Participant demographics.

Name	Age	Education	Child disability	Child age	Parent stress level (difficult child subscale)
Martha	40	Graduate school	ASD/Speech	8	99th percentile
Alicia	39	Some college	ASD/Speech	10	98th percentile
Sylvia	39	Some college	ASD/ID	9	99th percentile
Maria	41	Some high school	ASD/ADHD	11	99th percentile
Victoria	46	Some high school	ASD	15	99th percentile
Cristina	42	High school degree	ASD	6	81st percentile
Ana	42	Some high school	ASD	11	92nd percentile
Janet	41	High school degree	ASD/DD	11	96th percentile
Ruby	46	Some college	ASD	14	99th percentile
Alejandra	26	High school degree	ASD/Speech	7	99th percentile
Natalie	43	Graduate school	ASD/LD/ID/ Speech/DD	10	98th percentile
Maribel	39	Graduate school	ASD/Speech	7	99th percentile
Crystal	47	College degree	ASD	11	97th percentile

ASD, autism spectrum disorder; LD, learning disability; ID, intellectual disability; DD, developmental delay; ADHD, attention deficit hyperactive disorder.

Recruitment

During the recruitment personalismo (i.e. the process of developing confianza or trust) was used to develop relationships with the potential participants (Magaña 2000). Participants were recruited in two states (i.e. Illinois and Tennessee) in the United States through parent and disability organizations. The authors have close relationships with these organizations facilitating culturally responsive recruitment using personalismo. The materials used to recruit participants were available in English and Spanish. Participants were informed that they were going to be asked questions regarding their most recent IEP meeting and their family-school partnership. Each participant received a $20 stipend. Specifically, participants received a $10 stipend after completing the interview and a $10 stipend after completing the member checking (e.g. participant validation of the interview). With 13 participants, saturation was reached as indicated by redundancy of themes. This study was approved by the Institutional Review Board.

Measures

Family demographic questionnaire

The family demographic questionnaire included 45 items (e.g. household income, types of services the children with ASD received, and participation in parent support groups). Embedded within the demographic questionnaire was the PSI-SF and the Acculturation scale. The demographic questionnaire took participants 15–20 min to complete. The demographic questionnaire was completed prior to the individual interviews.

Parenting Stress Index-Short Form (PSI-SF, Abidin 1990)

The PSI-SF is a 36-item questionnaire with response options ranging from 1 (strongly disagree) to 5 (strongly agree). High overall scores indicated that mothers have greater stress. The PSI-SF is available in Spanish (Solis and Abidin 1991). The PSI-SF has been translated into Spanish and has successfully been used with Latina mothers of children with ASD (e.g. Burke and Hodapp 2014) with high reliability (e.g. .85, .87, respectively, Solis and Abidin 1991). The PSI-SF also measures the accuracy of parent responses with the “defense responding” scale. None of the participants had scores indicating defensive responding.

Acculturation Scale (Félix Ortiz et al. 1994)

The participants were given the 7-item, Acculturation Scale to assess participant’s preferred language regarding: writing, speaking, and reading. The scale is scored on a 5-point Likert-type scale ranging from 1 (Spanish all of the time) to 5 (English all of the time). See Table 2.

Table 2.

Extent of acculturation.

Participant	Proficiency in speaking English	Proficiency in reading English	Proficiency in writing English	Years living in the U.S.
Martha	Okaya	Okay	Okay	11 years
Alicia	Good	Good	Good	17 years
Sylvia	Okay	Okay	Okay	10 years
Maria	Poor	Poor	Poor	12 years
Victoria	Poor	Poor	Poor	20 years
Cristina	Good	Good	Okay	35 years
Lupe	Poor	Poor	Poor	25 years
Ana	Okay	Okay	Okay	20 years
Janet	Okay	Okay	Okay	29 years
Ruby	Okay	Okay	Okay	3 years
Alejandra	Good	Good	Excellent	21 years
Natalie	Excellent	Excellent	Excellent	6 years
Maribel	Good	Good	Good	10 years
Crystal	Poor	Okay	Poor	20 years
Griselda	---	---	---	---
Jessica	--	---	---	---

^a Each proficiency subscale has four response options: poor, okay, good, and excellent.

Interview protocol

The interview protocol was developed based on literature about: Latina mothers’ experiences during the special education process (e.g. Hughes et al. 2008, McHatton and Correa 2005), Latina maternal health and well-being (e.g. Magaña et al. 2013, Magaña and Smith 2006); and school experiences of Latino children with ASD (e.g. Burke and Goldman 2018). To evaluate the validity and composition of the interview questions, two Latina mothers of children with ASD piloted the interview protocol. Minor changes were suggested (e.g. changing the order of questions). After the changes were made, the protocol was finalized. The protocol included nine open-ended questions and probes about parent’s overall experiences about their most recent IEP meeting (e.g. “How did you feel prior to your last IEP meeting?” and “Can you tell me more about that IEP meeting experience?”), with additional probes based on information that participants provided in the family information questionnaire.

Procedure

Interview and Questionnaire

All interviews were conducted over the phone. Research has indicated that in-person and phone interviews may generate the same results (Sturges and Hanrahan 2004). The participants chose their preferred language, time, and date of each interview. Ten participants chose to have their interview conducted in Spanish. Each interview was audio-recorded. Prior to each interview, each participant was asked to complete the questionnaire. There was a total of 13 hrs of interview data; each interview ranged from 36 min to 1 hr and 29 min. The interview transcripts were comprised of 114 single-spaced pages.

Field notes

Written by hand during the interview and typed into the author’s laptop immediately after each interview, each author wrote field notes including descriptive information (e.g. conditions of the interview) and reflective information (e.g. coding ideas).

Transcription

Each interview was transcribed verbatim by the second and third author. The second and third author’s native language is Spanish. In addition, both authors have had over five years of experience working with individuals with disabilities. Notably, both authors have had over three years of experience interviewing Latina mothers. After each interview was transcribed, the transcript was translated into English. The second author then compared the transcript with the Spanish audiotape to ensure accuracy. This translation method is commonly used for interviews conducted in another language to ensure the quality and accuracy of each interview (Brislin 1970). The second author checked the accuracy of each transcript by listening to the audio while reading the transcript.

Member checks

Summaries were created at the end of each interview for a level one member check. In addition to conducting brief member checks at the end of each interview, we also conducted a level two member check (Brantlinger et al. 2005). Specifically, after each interview was transcribed and coded, participants were emailed a summary of their individual interview and asked to validate, add or make changes to their individual summaries. All participants agreed with their summaries.

Data analysis

Family demographic questionnaire

These data were triangulated with the interview data. Specifically, triangulation is used to obtain convergence, corroboration, or correspondence of results from multiple methods (e.g. individual interviews and family demographic questionnaire, Greene, 2007). In addition, the means, standard deviations and ranges were conducted for the PSI-SF; also, scores were compared to the normed scores. Notably, all coding and analysis was completed toward the end of data collection.

Qualitative data analysis

First, the authors read the transcripts to familiarize themselves with the data (Tesch, 1990). Then, independently, they used constant comparative analysis (Glaser and Strauss, 1966) and emergent coding (Patton 2002) to code the transcripts. Each piece of data was highlighted and marked with a phrase. If the data represented a single concept or idea, it was given a code; if the data represented a code that had been identified, it was labeled with the same code. A line could have several codes. For example, regarding maternal perceptions toward children’s problem behaviors, the authors first developed a list of codes. In total, there were 22 codes. Codes included: fear, sad, frustrated, stressed, and drained. The authors discussed their coding. Particularly, the authors compared codes, settled differences, and developed a codebook. Each author returned to the data and re-analyzed the interview data using the codebook. The authors then: discussed and compared codes; addressed discrepancies; and finalized the codes. Lastly, the authors grouped the codes into categories and organized the categories into themes based on the data (Braun and Clarke 2006).

Trustworthiness

This study met several of the quality indicators for trustworthiness (Brantlinger et al. 2005). For example, triangulation was used between the family demographic information and the interview data to measure data validity and to ensure that the results were valid and reliable. Also, member checks were sent to participants to ensure the accuracy of their views after data analysis. All authors listened to the audio-taped recordings of each participant. During the interview, detailed notes of the participants were used to further ensure the trustworthiness of the findings. In addition, the authors identified potential biases and were reflexive throughout data collection and analysis. Also, the authors consulted with one another to compare perspectives.

Findings

Maternal psychological well-being, child behavior, and maternal perceptions of the school were inter-related. Specifically, when parents reported poor well-being, it seemed that their child also had significant problem behaviors and the parents had poor experiences with the school. Notably, our findings were not linear. It seems that there may be a non-linear pattern among each construct. See Figure 1. For clarity, below, we present the findings in response to each research question.

Figure 1.

Processes between school perceptions, child behavior, and maternal well-being.

Maternal psychological well-being and child behavior

Participants reported feeling fear, sad, frustrated, and stressed in regard to their child’s behavior. Specifically, the psychological well-being of mothers raising a child with ASD was related to the child’s behavior. See Table 3.

Table 3.

Maternal psychological well-being and child behavior.

Emotion	Sample Quote
Fear	Sylvia dijo que sintió miedo de lo que le pasara ella a medida que el crezca y teme por su futuro. Sylvia además declaro: Yo misma estoy, como se dice, con miedo, ¿no? ¿Qué va a pasar? Sylvia reported feeling afraid of what will happen to her son as he grew older and fears for his future. Sylvia further stated: I myself am, how do you say it, afraid, right? What is going to happen?
Sad	Alejandra stated that her son’s behavior’s make her emotionally sad. Alejandra stated, “I do get very emotional like, just the fact that they [school personnel] tell us that Damian did this and Damian did that…Yes, I felt so sad.”
Frustrated	Janet declaro que el comportamiento de su hijo puede ser frustrante para ella y no esta segura de como tratar a su hijo. Janet declaro: Se frustra [mi hijo] a veces, yo pienso, porque llora a veces mucho umm y hace berrinches también y eso me frustra a mi porque no sé cómo ayudarlo. Janet stated that her son’s behaviors can be frustrating for her and she is unsure of how to treat her son. Janet stated: Sometimes he [my son] gets frustrated, I think, because sometimes he cries a lot umm and he throws temper tantrums too, and that frustrates me because I do not know how to help him.
Worried	Victoria dijo que su hija, puede ser vulnerable, especialmente en entornos comunitarios y esto es una preocupación para Victoria. Victoria dijo, “Entonces, mis preocupaciones son de que tuviera mucho cuidado de no dejarla sola. Yo aquí en la casa le estoy diciendo que no la deje tocar y sé que alguien la va tocar, que no se deje tocar ni de la mano.” Victoria stated that her daughter, can be vulnerable especially in community settings and this is a concern for Victoria. Victoria stated: So, my worries are that I am very careful not to leave her alone. I’m here at home telling her not to let herself be touched and I know that if someone is going to touch her, not to let her even be touched on her hand.”
Stressed	Cristina, a mother of two children with autism, stated that her first born child have various behavioral needs. Cristina further stated, “… that stress level that parents end up with, it’s uh…post-traumatic stress disorder, similar to soldiers in war… I can relate… Emilio [son], for the most part in my case, my stress kid just because of his levels of needs.”

Maternal perceptions and the school

Negative perceptions of school

Participants reported being dissatisfied with school services. All participants reported negative perceptions of the school because they had negative experiences with school personnel. Natalie requested that the school provide her child with needed services to improve his reading, writing, and social skills. Natalie reported, “I’m very disappointed with her [school professional]–with what she represents. I feel that I'm not asking for more than what my child should be receiving. I'm just asking for him to get an education… that’s all that really matters to me.” Similarly, Maribel, reported that her child’s “autism program” was canceled a month before classes began. She explained that the school sent her child to a general education program, which could not meet his needs. Maribel stated:

¿Sabes qué? No está funcionando [ubicación actual del hijo]. El comportamiento de Luis ahora es agresivo. Esta pateando. Esta aventando [cosas]. Se la pasa llorando en la escuela. No quiere ir. Entonces, tenemos algo que hacer. Desafortunadamente, las escuelas no quieren pagar.

You know what? It’s [son’s school] not working. Luis’ behavior is now aggressive. He is kicking. He is throwing [things]. He is always crying at school. He does not want to go. So, we have to do something. Unfortunately, the school does not want to pay.

None of the participants reported positive perceptions of the school.

The school disregards parent input. Participants reported that the school refused to listen to their suggestions. Participants reported that when they provided advice for the school to address their child’s behavior, the school did not follow their advice. Alicia stated that the teachers lacked knowledge about teaching children with disabilities. Accordingly, the school failed at educating her son. Alicia reported:

Ella [terapeuta] me recomendó que por el comportamiento de mi [hijo], le dieran mensajes positivos…pero ellos [maestros] dijeron que no…así que, hasta que los confronte [maestros] con el psicólogo y les hice la misma pregunta y comenzaron a cambiar.

She [therapist] recommended that for his [son’s] behavior, they should give him positive messages… but they [teachers] said no…so, until I confronted them [teachers] with the psychologist and I asked them the same question and [then] they started to change.

Maria reported that on multiple occasions she requested for her child to have an educational assistant. However, the school refused to listen to her suggestion:

Entonces, ellos [personal escolar] decían que no lo necesitaba y no lo necesitaba hasta que ellos mismos decidieron trabajar [con mi hijo].

Well, they [school personnel] said, ‘No, he doesn't need one and no, he doesn’t need one’ until they [school personnel] decided to work [with my son].

Because the school refused to listen to the input of parents, participants reported feeling relegated to passive roles.

False descriptions of the child

Participants reported that the school inaccurately characterized their children. Specifically, participants were provided with deficit-based and false descriptions that led school personnel to set low expectations for their children. Alicia reported that the school provided false information about her child on the IEP:

Cuando me lo entregaron [el documento del IEP], vi varias cosas [por ejemplo, se escribió un nombre diferente del niño en los documentos del IEP; la entrada de los padres no se escribió con precisión] que no estaban bien. Ellos lo cambiaron otra vez… y dure una hora y media, más o menos, hasta que me dieron el documento [correcto].

When I was handed it [the IEP document], I saw several things [e.g., different name of child was written on IEP documents; parent’s input was not written accurately] that weren't right. They changed it again… and I had to wait an hour and a half or so until I got the document [corrected].

In addition, Maria reported that her child’s teacher only reported negative attributes about her son:

Bueno, hablo de mi hijo que salió bajo y ella siempre se quejó de que mi hijo nunca hacia nada, de que era el niño más atrasado, pero pues la realidad es que la que lo atraso fue ella. Ella fue la única culpable de que mi hijo aprendiera lo que tenía que aprender.

Well, she talked about my son who performed poorly and she always complained that my son never did anything, that he was the most behind, but the reality is that she set him back. She was the only one to blame for my son [not] learning what he had to learn.

In addition, participants reported that the school provided insulting descriptions of their children. Cristina reported:

On my first domain meeting…they [school personnel] started throwing things like, ‘He [son] has the speech of an eight- month-old’, ‘He's functioning cognitively as an eight-month-old’—and so all of those things were like rock hard stones in my heart.

Other participants also reported that the school provided deficit-based descriptions about their children. Maribel worried that the school was not challenging her child because the teachers had low expectations for children with ASD. Maribel stated:

Desafortunadamente, muchas personas asumen que, porque no habla, no sabe, ¿verdad? Yo empecé hablar con la maestra y le dije, no, Luis necesita que tener algo más apropiado porque yo sé que él sabe más y prefería que tú le exijas más y veamos de a partir de allí que tanto sabe.

Unfortunately, many people assume that, because he doesn't talk, he doesn't know, right? I started talking to the teacher and I said, no, Luis needs to have something more appropriate because I know that he knows more and I would prefer for you to demand more and we can move forward from there.

Cristina also reported that the teacher refused to challenge her son: “…and I requested homework [for my son]. She [school teacher] said what for?” Similarly, Ana reported that the school did not have high expectations for her son:

Me dijeron que me hijo nunca iba hacer orador y nunca iba a estar en frente [de la clase]…como lo que estas pidiendo es demasiado. Si, en ese momento mi nivel de estrés puede subir porque pienso que no mi hijo y ni ningún otro niño se les deben de poner límites.

I was told that my son was never going to be the speaker and he would never be in front [of the classroom] …like that is asking for too much. Yes, at that moment my stress level may go up because I do not think that my son or other children should be limited.

Maternal responses to school’s actions and maternal psychological well-being

There were mixed responses regarding the school’s actions to address their children’s behavior and maternal responses.

Parent inaction

Participants reported being unable to communicate with school personnel about their children’s behavior. Some participants reported inaction when interacting with school personnel to address the child’s problem behaviors. Cristina reported:

You have no idea how it feels to be surrounded by this army of educators and educated people… especially with when my son, Emilio, was behaving so badly and you feel that you just stop. You stop listening at one point. You just have an out of body experience… You completely black out.

Alejandra reported feeling nervous when meeting with teachers:

I'm walking to the class and I'm like, ‘I'm going to ask this. I’m going to ask that.’ but then when I get to them, I'm like, uh, I totally forgot like exactly the things I wanted to ask you to like –I get so nervous…

Regardless of how the school addressed the child’s behavior, some participants reported feeling unable to communicate with school professionals.

Mother’s defensive advocacy toward school personnel

Defensive advocacy was defined as the persistent efforts of mothers to obtain services for their children. Maribel reported:

Es normal pensar como padre, oh, mi hijo es muy important porque el es mi hijo ¿verdad? Pero las escuelas, desafortunadamente no, es otro niño más que necesita servicios. Entonces, por eso es tan importante también que los papas seamos la voz, seamos los que siempre exigimos lo que los niños se merecen por ley.

It’s normal to think as a parent, ‘Oh, my child is very important because he’s my son.’ right? But schools, unfortunately don’t; he’s just another child in need of services. So that’s why it’s so important for parents to be their voice, that we are always demanding what our children deserve by law.

Maria expressed a similar sentiment; she said that she would advocate for her child and she would do whatever it took to have the school listen to her. Maria stated:

…saben [la escuela personal] que yo se defenderme. Entonces, si ellos tratan de ponerme una barrera, ellos saben perfectamente que yo voy a buscar la manera de que me escuchen porque si ellos no lo quieren hacer, ellos saben que puedo irme al distrito.

…they [school personnel] know that I will defend myself. So, if they try to put a barrier on me, they know perfectly well that I'm going to find a way to be heard because if they don't want to do it, they know I can go to the district.

Effect on well-being

Participants reported being negatively affected by interactions with school personnel. Cristina experienced the physical and emotional effect on her well-being:

I had rashes. I was going to bed at 3, 4 o’clock in the morning um 3-4 o’clock in the morning and I would wake up every so often because I would wake up with a pencil in my hand and say, ‘I forgot to ask about this’. And you know, it was like that stress level that you just could not–there was always something else that you would think about…

Similarly, Natalie reported an effect on her sleep after having to file due process. Natalie reported, “I sometimes have like these cycles where I suffer from insomnia and I’m like on that again.” Similarly, Martha attributed her stress to her interactions with school personnel about her child’s behavior:

Tengo mucho estrés, pero cuando veo que las cosas van bien con el niño, como padres, sabemos si las cosas van bien o no… Cuando hay un problema en el aula, mi nivel de estrés es hasta el cielo.

I do have a lot of stress, but when I see that things are going well with the child, as parents we know if things are going well or not… When there's a problem in the classroom, my stress levels skyrocket.

Alejandra, an English-speaking participant, reported becoming emotional when discussing her child’s behavior with school personnel:

I do get very emotional… just the fact that they tell us that ‘Sebastian did this’ and ‘Sebastian did that’ and ‘Oh, he’s improving in this’ and I just get very emotional and like I can't you know, sometimes I can't speak.”

All participants reported a negative effect on their well-being having to address their child’s behavior with the school.

Discussion

This study produced three main findings. First, all participants reported feeling fear, frustration, worry and stress due to their child’s behavior. Notably, participants were also worried about their child’s safety and were frustrated with their child’s problem behavior. Thus, as suggested by previous research, there is a pattern between child problem behaviors on parent stress and well-being (Magaña, Li, Miranda, and Paradiso de Sayu, 2015, Neece et al. 2009). This study extends the literature by suggesting that child problem behaviors may also contribute to Latina maternal stress. Second, participants reported negative perceptions related to the school. Specifically, participants reported that their input was ignored by school professionals. Similarly, previous research about Latina mothers of children with ASD documents negative collaborative experiences with school personnel (Hughes et al. 2008, Shapiro et al. 2004). Therefore, positive examples of cultural reciprocity should be utilized to improve family-school partnerships and special education experiences (Kalyanpur and Harry 2012). Given these two findings and their alignment with prior research, it seems critical to address child problem behavior, maternal stress, and family-school partnerships among Latina mothers of children with ASD.

Third, participants reported mixed responses regarding the schools’ actions to address child’s behavior and their own responses. Indeed, responses fell on two opposite ends of a spectrum: parent inaction or defensive advocacy. Prior research has found that teachers perceive Latino parents as having passive roles during their child’s IEP meetings (Povenmire-Kirk et al. 2010). The findings from this study may provide context for their response (i.e. passivity or inaction). For example, instead of dismissing their inaction as lack of interest, Latina mothers may be feeling emotional or overwhelmed. To address this, cultural responsiveness is needed from the school personnel (Magaña 2000). Specifically, school professionals should try to reduce the emotionally charged nature of IEP meetings by ensuring that the strengths as well as the needs of the child are discussed.

In contrast to being inactive, some participants reported using defensive advocacy. Previous research has found that Latina mothers choose between passivity or alienated advocacy (i.e. confrontational or defensive advocacy, Shapiro et al. 2004). Specifically, participants used defensive advocacy in response to feeling disregarded by school personnel, which resulted in mothers feeling alienated from the school and advocating more assertively for their children. This study builds on such prior research by affirming that parents may choose between inaction and defensive or alienated advocacy; however, regardless of which type of action is conducted, all Latina mothers reported wanting the best for their children.

Limitations

This study has a few limitations. First, the study’s sample was heterogeneous with respect to nationality and geographic representation. Cultural values (e.g. the perceptions of the meaning of ASD) and geographical differences could impact the experiences of Latina mothers. Notably, mothers self-reported their child’s diagnosis as having ASD. Thus, there was no confirmation of ASD diagnosis. Second, participants were only interviewed once. It is important examine parents’ experiences and perceptions across the child’s life as parent well-being changes over time. Third, the study was based on self-report data and may have influenced the accuracy of results. Interviews with school personnel and child observations can further contribute to developing a holistic understanding of child behaviors, maternal well-being, and school experiences. Finally, the majority of participants indicated clinical levels of stress. This study aligns with prior studies which indicate that mothers of children with ASD (versus other disabilities) have greater stress (Geenen et al. 2003, Shapiro et al. 2004).

Implications for research and practice

Intervention research is needed to address school perceptions, child behavior, and maternal psychological well-being. For example, interventions to improve maternal well-being need to be developed and tested among Latina mothers. The intervention, By Caring for Myself, I Can Care Better for my Family, created by Magaña et al. (2015) has been effective in reducing stress for Latina mothers of children with disabilities, including ASD. However, the intervention does not address the role of the school in addressing child behavior and the subsequent effect on stress. Notably, the perceptions meaning of autism should be further explored. This study, along with prior research (e.g. Burke and Hodapp 2014), suggests that some maternal stress can be attributed to the school.

Additionally, intervention research is needed to improve family-professional partnerships. At present, there are few interventions to improve family-professional partnerships; no intervention targets Latino families or families of children with ASD (Goldman and Burke, 2017). The latter is especially concerning given that families of children with ASD (versus other types of disabilities) experience worse family-school partnerships (Burke and Goldman 2015). Thus, future intervention research should not only address maternal stress but also include information and skills to directly target school-related stress.

Disclosure statement

No potential conflict of interest was reported by the author(s).