Parents’ Experience of the Diagnosis of Autism Spectrum Disorder: Opportunities for Marriage and Family Therapists

Abstract

The purpose of this exploratory study was to understand how parents experience their child's autism spectrum disorder diagnosis and highlight opportunities for marriage and family therapists (MFTs) to apply their specific training and expertise to support these families. A thematic analysis was performed on data collected during the parents’ initial assessment to better understand the components of their experience. Four major themes emerged from the analysis: understanding, acceptance, coping, and emotion. Many subthemes were also identified across these major themes and while the majority of parents revealed positive experiences, a portion of parents expressed challenges with the diagnosis. Marriage and family therapists are equipped with specific training and expertise which can help identify difficulties in the diagnostic experience, help families improve their well-being through building resilience, and create a healthy environment for the treatment journey ahead in the context of individual, couples, or family therapy. We present recommendations for MFTs working with families with autistic children.

Keywords

autism autism spectrum disorder ASD autism diagnosis

Introduction

Having a child with autism spectrum disorder (ASD; also known as autism or autistic) places additional caregiving demands on parents (Milbourn et al., 2017). The characteristics of ASD such as a need for routine, repetitive behaviors, difficulty communicating and understanding social engagement, and sensory preferences present significant challenges to parents (Milbourn et al., 2017; Postorino et al., 2019). The impairments associated with autism impact not only the autistic child, but also their support system (Karst & Van Hecke, 2012). Caring for a child with ASD has been associated with increased fatigue, higher levels of stress, and increased feelings of isolation (Vasilopoulou & Nisbet, 2016).

When parents first learn of their child's autism diagnosis, they are faced with the loss of expectations they originally had for their child (Fernańdez-Alcántara et al., 2016). They are often flooded with fear of the worst-case scenarios they have read about or heard from others, which could include a child who may never speak and will throw tantrums that pose a risk of harm to themselves and others (Russell & Norwich, 2012). The shock and stress experienced by families who are coping with their child's autism diagnosis can lead to new challenges such as disharmony in the family, potential catalyst for divorce, decreased work productivity, and withdrawal from social supports (Nurhastuti & Fatmawati, 2018). Parents’ fears may become offset when they learn of successful autistic people who carry the same diagnosis, or high-profile individuals who have become successful despite their challenges. This can also cause additional confusion as high-profile, very successful autistic adults, are not representative of the majority of the autistic population. Regardless of the depth of their understanding of autism, parents are often faced with a time of grief, accompanied by the fear of the unknown (Fernańdez-Alcántara et al., 2016).

ASD is a complex heterogeneous neurodevelopmental disorder with impairment in social-emotional reciprocity and the presence of restrictive and repetitive behaviors (APA, 2013). The DSM-V work group (APA, 2013) recognized this complexity by changing the diagnostic categories from the several distinct categories identified in DSM-IV-TR (APA, 1994) to a spectrum in DSM-V and transitioned from a three-factor model to a two-factor model. Additionally, the diagnosis of ASD is now qualitatively described by three corresponding levels with Level 1 being described as someone who requires support, Level 2 being described as someone who requires substantial support, and Level 3 being described as someone who requires very substantial support (APA, 2013). This, combined with laws being passed in all 50 states (Autism Speaks, 2019) requiring private health plans and government insurers to recognize ASD as a medical condition requiring treatment, has changed the way ASD is perceived and diagnosed. Prevalence rates are rising as reported by the CDC and it is now estimated that 1:44 8-year-old children have ASD, up from 1:88 in 2008 (Maenner et al., 2021).

With prevalence rates on the rise, more families are faced with challenges associated with caring for a child with ASD. Families of children with ASD experience increased parental stress as compared with families of children without a developmental delay (Lai & Oei, 2014) as well as report significantly less parenting self-efficacy (Smart, 2016). Historically, when a child was diagnosed with ASD, they were referred for intensive behavioral treatment (predominantly applied behavior analysis), where the focus of the treatment was on the child. These behavioral treatment interventions are most effective when the environment is stable and creates ideal conditions for the child to progress through their interventions while the family members learn new ways of providing support (Osborne et al., 2008). Family counseling can include strengthening relationships, building resiliency, and helping the family develop new approaches to problem-solving that can be directly applied to challenges that result from coping with their child's ASD (Kurz, 2018; Nurhastuti & Fatmawati, 2018). Regardless of the modality of individual behavioral treatment the child with ASD receives, family therapy can help minimize the risk of significant impact on the family as well as to create an environment optimally suited for individual behavioral treatment to be effective (Kuravackel et al., 2018; Nurhastuti & Fatmawati, 2018).

There is a small body of research that investigates the experience of the family throughout their journey of identifying their child has developmental delays, seeking a formal diagnosis from a physician, and advocating for treatment to begin as soon as possible. This often-complicated journey has been found to be difficult and stressful for many families (Bravo-Benítez et al., 2019; Gentles et al., 2020; Heiman, 2021; Makino et al., 2021). However, the current understanding of caregivers’ experience of ASD at the time they are preparing to enter treatment is relatively unexplored. This leaves a blind spot for marriage and family therapists (MFTs) in understanding how they can bring their family systems perspective into the comprehensive treatment program to integrate the needs of the family with the needs of the child.

In this qualitative study, we sought to understand parents’ experience following the diagnosis of ASD and once treatment was initiated. We believe having a better understanding of parent experience at this critical juncture in their ASD journey can highlight the important role of MFTs as a part of the treatment team, and additionally assist MFTs’ preparedness to work effectively with these families.

Materials and methods

Participants

Data for this study were obtained from a behavioral health organization in a metropolitan area of California that manages behavioral treatment for individuals with ASD and other developmental disabilities. These data included 75 caregivers of children with ASD under the age of 17 (<6 years of age, N = 25; 6–11 years of age, N = 25; 12–17 years of age, N = 25) whose children recently received an ASD diagnosis and were subsequently referred for behavioral treatment. Participants represented different ethnic backgrounds (5% African American, 17% Asian, 16% White, 13% Latin, 1% Native American, and 45% not identified or declined) with a gender distribution of 25% female and 75% male.

Source of data

After receiving a diagnosis of ASD, parents were referred to the behavioral health organization, whose data were used for this study, for subsequent treatment recommendations. At the time of referral (within 10 days) an intake appointment was scheduled with the family. Prior to the intake appointment, the assigned clinician reviewed the diagnostic report and other relevant information for the client. The intake appointment takes approximately one to two hours to complete and is structured as a biopsychosocial interview. This initial assessment is designed to assist in determining the appropriate treatment modality for the child which includes the client's clinical profile, family priorities, and evidence-based treatment practice recommendations. The initial assessment includes many questions directed toward parents, and clinicians were instructed to document the response of the caregiver objectively and reproduce the language of the caregiver as closely as possible. The open-ended question relevant to this analysis was as follows:

“What is your current understanding of the client's diagnosis?”

These clinicians recorded a range of responses to this question as either a direct quote or as a report of what the parent said (e.g., “parent said she is not sure of his diagnosis”). Given the structured interview was intended to elicit answers regarding recommended treatment rather than for research purposes both direct quote and report of what the parent said were accepted for coding. This also resulted in the authors rejecting a set of responses that were not aligned with the question asked, with the remaining responses analyzed for this study.

Approach/strategy—thematic analysis

Qualitative responses were evaluated leveraging a thematic approach, which is a flexible and commonly used framework for evaluating qualitative data that has the potential to uncover patterns (themes), defined as “some level of patterned response or meaning within the dataset” (Braun & Clarke, 2006, p. 10). Thematic analysis requires a relatively small sample size due to a phenomenon called “theoretical saturation,” in which analyzing more data does not add further themes after a certain sample threshold has been crossed (Dworkin, 2012). Previous studies have demonstrated sample sizes between 25 and 30 are the most common for thematic analysis (Boddy, 2016; Braun & Clarke, 2021). Therefore, we included a randomized sample of 75 caregiver responses, 25 from each of three age groups (e.g., <6; 6–11; 12–17) to allow for varying themes to be analyzed within and across these age groups.

We set out to understand parents’ knowledge and experience of their child's ASD diagnosis in the context of age groupings in order to elucidate insights into these caregivers’ support needs in the context of marriage and family therapy treatment recommendations. A thematic analysis allowed us to investigate our hypothesis. Since the age of onset of ASD is less than 3-years-old (APA, 2013), and early intervention has been shown to be the most effective form of treatment (Makrygianni et al., 2018; Rogers et al., 2021; Tiura et al., 2017), we hypothesized parents of children diagnosed at a later age would experience the diagnosis differently than those diagnosed at younger ages, thusly, allowing them to start treatment sooner. For this reason, we analyzed a sample of 25 clients in each identified age group to ensure we had adequate data to draw conclusions relative to each age group ultimately with the purpose of supporting treatment plan recommendations within a marriage and family therapy systems approach.

Data analysis

Data Corpus

The data corpus of the survey responses consisted of 5,316 records that included answers to the survey question leveraged in this study. Each record was associated with one client. In addition to the response to the identified survey question, each record included other variables that were associated with the client, which allowed us to filter and categorize our dataset. The relevant variables were as follows:

Client Identification Number

Client age at the time of Initial Assessment

List of diagnoses associated with the client

Data Set

To prepare the dataset to be analyzed, we filtered the records to include only clients with a primary diagnosis of ASD, with or without a secondary diagnosis of intellectual disability (ID; N = 4,242). Clients with other diagnoses (N = 1,074) were filtered out of the dataset to ensure that the responses analyzed would provide insight into caregivers’ understanding and experience of receiving the diagnosis of ASD.

To analyze the data, we used MAXQDA (VERBI Software, 2021), a proprietary software program that is used for computer-assisted qualitative and mixed methods data analysis. Survey data were initially aggregated into a spreadsheet and then imported into MAXQDA.

Determining themes

Themes were coded to randomly selected responses by a team of five clinicians and technical experts through a two-phased process. The first phase included coding across the entire dataset of filtered responses, resulting in 62 different codes. Further review revealed there were common themes among the answers, that led us to a second phase of coding which were organized into four higher-level thematic factors, which were as follows:

Level of understanding—how well the parent understood the diagnosis

Emotion—how the caregiver felt about the diagnosis

Coping—how the caregiver was coping in response to the diagnosis

Acceptance—to what level did the caregiver accept the diagnosis

For the “Level of Understanding” theme, we identified three categories: good, some, and limited. The “Emotion,” “Coping,” and “Acceptance” themes were organized with respective sub-themes as shown in Table 1.

Table 1.

Response Themes.

Understanding	Emotion		Coping
Understanding	Negative emotion	Positive emotion	Avoidant coping	Active coping	Acceptance
Good Some Limited	Worried Troubled Angry Annoyed Upset Frustrated Afraid Stressed Scared Anxious Overwhelmed Burned out Feeling Guilt/Shame Despair Disappointed Powerless Sad Uneasy Dissatisfied Hopeless Very unhappy Concerned Fearful	Motivated Relieved Confident Determined Courageous Grateful Hopeful Appreciative Inspired Optimistic Encouraged Empowered	Feeling Paralyzed Blaming Waiting Withdrawing Giving up Hiding Dx from client Processing	Learning Supporting Talking Investigation Advocating Engaging Consulting Fighting Seeking help Joining	Embracing Agreeing Validation Resignation Surprised/shocked Unsure Unclear Confused Suspicious Doubtful Disbelief Denial

Thematic analysis-coding process

First, the team agreed on a set of engagement rules, meant to ensure consistency throughout the coding process (see Figure 1). Next, using these rules, the team assigned themes to responses in the data set through analysis and discussion. When in agreement, the codes were assigned to the response, and the team moved to the next response until a total of 25 were reached for each age group. If consensus was not reached, the response was rejected and not included.

Figure 1.

Rules for coding the themes in provided responses.

Results

Subjects in our study were parents of children with a primary diagnosis of ASD without a secondary diagnosis (N = 4,203), and parents of children with a primary diagnosis of ASD with a secondary diagnosis of ID (N = 37), resulting in a total sample size of 4,240 records. Data for our study were gathered an average of 75 days after the child received their ASD diagnosis. Data were separated into three groups which reflected the age of the client at the time of the intake (<6 years old N = 2,905; 6–11 years old N = 922; 12–17 years old N = 414). Responses to the question “What is your current understanding of the client's diagnosis?” were randomly pulled within each age group, resulting in three distinct groups of responses. The sample for this study consisted of the first 25 responses from each age group to reach the minimum threshold of three coded themes, resulting in a total sample of 75 responses.

Thematic coding and categorization of responses

The 75 responses were each coded for the four identified themes and their associated sub-themes. The results are shown in Table 2.

Table 2.

Themes Found by Category^a.

Theme	Category ^c	Client Age ^b
Theme	Category ^c	<6 (N = 25)	6–11 (N = 25)	12–17 (N = 25)	Total (N = 75)
Understanding	Good	8	8	3	19
	Some	14	14	19	47
	Limited	3	3	3	9
Total understanding		25	25	25	75
Acceptance	Embracing	20	18	22	60
Acceptance	Unsure	5	6	3	14
Total acceptances		25	24	25	74
Emotion
Positive emotion	Empathy^a	0	0	1	1
	Determined	2	0	0	2
	Motivated	3	3	1	7
	Relieved	0	1	0	1
	Grateful	1	0	0	1
	Hopeful	2	2	0	4
	Optimistic	2	2	2	6
	Positive about service^s	0	0	1	1
	Total positive emotion	10	8	5	23
Negative emotion	Ashamed	0	1	0	1
	Concerned	3	2	3	8
	Worried	1	0	2	3
	Hopeless	0	1	0	1
	Total negative emotion	4	4	5	13
Total emotion		14	12	10	36
Coping
Avoidant coping	Hiding diagnosis from client	0	0	1	1
	Processing	2	1	1	4
	Total avoidant coping	2	1	2	5
Active coping	Analyzing^a	0	2	1	3
	Seeking help^a	2	3	5	10
	Advocating	1	1	1	3
	Joining	0	1	0	1
	Investigating	2	2	0	4
	Learning	9	5	4	18
	Talking	1	0	0	1
	Eager to start^a	1	3	3	7
	Adjusting^a	1	0	2	3
	Engaging	2	1	2	5
	Supporting	3	0	1	4
	Total active coping	22	18	19	59
Total coping		24	19	21	64

Categories determined during coding exercise.

Client age at the time data were gathered.

Categories were considered if responses were nonzero in at least 1 age group.

Analysis of themes and categories

Theme of Understanding

The knowledge that parents demonstrated about ASD in their response was categorized into three levels: good, some, and limited.

Good: The parent provided a robust and accurate description of ASD and/or discussed multiple characteristics of their child that fit the diagnostic criteria for ASD.

[my child's] development may be lower than expected for his age and while he may not be functioning as his peers, he may reach milestones at his own pace … [he] also has abilities that other children do not have

While this parent did not list the diagnostic criteria of ASD, they showed that they have a good understanding by describing how ASD presents in their child as compared with typically developing peers.

Some: The parent stated that they have learned about ASD and/or discussed a characteristic of their child that fit the diagnostic criteria for ASD.

… [parent] reported being familiar with autism and that autism has a wide variety of presentations

What this parent shared is accurate, but only a surface-level description of ASD.

Limited: The parent inaccurately described ASD and/or shared that they had limited to no knowledge about ASD.

I don’t really know … is this genetic?

This parent expressed they do not know much about ASD and brought forward a question rather than describing ASD.

From the 75 included responses with the theme of understanding, 19 (25%) were categorized as “good understanding,” 47 (63%) as “some understanding,” and 9 (12%) as “limited understanding.” The responses with limited understanding were evenly distributed across the age groups. The responses with some understanding were found most frequently in the 12–17-year-old group, while the responses with good understanding appeared least frequently in that age group as compared to the other age groups.

Theme of Acceptance

While all parents in the study had a child with a diagnosis of ASD, the level of acceptance they demonstrated in their responses fell into two categories: embracing and unsure.

Embracing : Willingly and enthusiastically accepting the diagnosis, and/or identifying their child as autistic.

suspected he was on the spectrum since he was very little and [parent] feels relieved now that he has an official diagnosis

While the reason the parent suspected that their child has ASD is unknown (could have another child on the ASD spectrum, have done research, or been told about ASD by a peer or professional), they expressed that the diagnosis was not a surprise and was in fact validating of their suspicions.

Unsure : Calling the diagnosis of ASD into question through doubt or disbelief.

I wonder how much of the autism is true for him

This parent is questioning the validity of the diagnosis, which indicates that they are not sure that their child is on the ASD spectrum.

Of the 75 responses included in the sample, 74 responses (25 < 6 years old; 24 6–11 years old; 25 12–17 years old) revealed a theme of acceptance by demonstrating they either embraced (81% overall, across all age groups) or were unsure about the ASD diagnosis (19%).

Theme of Emotion

Some parents in the study clearly articulated their emotional response to their child's diagnosis of ASD, others alluded to their emotions through their response, and some did not provide enough information for an emotion to be determined. We categorized emotions as either positive or negative based on our perception of how the emotion was affecting them.

Positive : Emotion that was described or stated that was experienced as positive for the caregiver in that their response to their child's ASD diagnosis.

It doesn’t define who she is, it is just a diagnosis

Through this statement, this parent is demonstrating a positive emotional response by suggesting that the diagnosis is a categorization or label but does not change who the child is.

Negative : Emotion that was described or stated that was experienced as negative for the caregiver in that their response to their child's ASD diagnosis.

She worries for him when he is older

This parent shows some level of anxiety about the future as they are concerned about what kind of future their child may have as a result of obtaining an ASD diagnosis.

Of the 75 responses included in the sample, 36 responses revealed a theme of emotion (14 for <6 years old; 12 for 6–11 years old, 10 for 12–17 years old). From these, 23 (64%) were categorized as a positive emotion, and 13 (36%) as a negative emotion. The theme of emotion was found more frequently in responses associated with younger clients, and the percentage of emotions that were positive decreased as the client age increased.

Most responses that indicated emotion were identified as motivated (19% of all emotions), optimistic (17%), or concerned (22%). Parents of children in the youngest group were the most motivated, and parents of children in the oldest group were the least motivated. Parents of children in the middle group were the least concerned and the most optimistic, while parents of children in the oldest group were the most concerned.

Theme of Coping

Parents often provided information through their responses that indicated how they were coping with their child's diagnosis of ASD. We categorized responses into two types of coping: active coping and avoidant coping.

Active Coping : Parent is engaged in learning more about ASD, connecting with peers or professionals as resources, or is serving as an advocate for their child to receive support.

Caregiver has been researching and reading books about ASD in order to educate and build her knowledge

Parent reports specific steps they have already been taken to further educate themself about ASD.

Avoidant Coping : Parent is internally processing their child's ASD diagnosis, is in denial, or has withdrawn from others in response their child's diagnosis.

Parent indicated they have not disclosed the ASD diagnosis to extended family members.

Rather than reaching out to family members actively for support in processing their child receiving an ASD diagnosis, this parent has chosen not to disclose at this time which is an avoidant coping strategy.

Of the 75 responses included in the sample, 64 revealed a theme of coping (24 < 6 years old; 19 6–11 years old, 21 12–17 years old). The percentage of responses that showed active coping (92% active across all age groups) were significantly larger across all age groups as compared to avoidant coping (8%).

Theme of Embracing Correlated with Other Themes

Of those responses indicating that the parent was embracing the child's autism diagnosis, most of the responses also indicated that the parent had a good or some understanding of the diagnosis (93%). There were a few parents (7%) accepting their child's autism diagnosis that showed limited understanding.

Parents who embraced the diagnosis demonstrated higher numbers of positive emotions (38%) than those with negative emotions (15%). We also found the majority to be actively coping (78%), with the minority demonstrating avoidant coping behaviors (5%). Learning and seeking help were the most common ways of active coping (28% and 20% respectively).

Discussion

Learning their child has ASD greatly impacts a parent's life. Parental response to receiving the ASD diagnosis can influence well-being and readiness to support their child (Ang & Loh, 2019; Lai & Oei, 2014; McAuliffe et al., 2017). Our study focused on gaining a deeper understanding of parental response to their child's diagnosis of ASD to help MFTs better prepare to support the families as they embark on their treatment journey. This study adds to the growing body of research investigating how parents experience the treatment journey alongside their child with ASD, with a specific focus on parents at the time of initiating treatment, whereas most prior research has been focused on the journey in its entirety (Gentles et al., 2020; Makino et al., 2021; Yaacob et al., 2022).

Our findings demonstrate parents of children with ASD who seek treatment generally understand and accept their child's diagnosis and are actively coping. We also discovered parents who accept their child's ASD diagnosis overwhelmingly exhibit some or good levels of understanding of ASD. Responses were distributed relatively evenly across clients’ age groups, but some age-dependent themes were observed. Of interest, parents of older children are more worried and less motivated than parents of younger children. While these families were the minority in our findings, they should not be overlooked as they may be less prepared to support their child with ASD and may be at greater risk for mental health and well-being concerns. MFTs are well-positioned to address these concerns and should seek to identify these families early and become integrated with their treatment team.

Understanding

Through assessing parental understanding of the diagnosis of ASD at the time the parent was initiating treatment for their child, we found most parents in our study had some or a good understanding of ASD. As public awareness of ASD continues to grow, so does the accessibility of related information and resources designed to help parents educate themselves (Jordan, 2010). Parents who seek a diagnostic evaluation for their child have often accessed available resources to learn about ASD prior to the diagnosis being given (Gentles et al., 2020). We believe increased public awareness of ASD contributed to the high levels of understanding we found.

It has also been found that simply receiving the diagnosis contributes to parents’ understanding of their child's ASD as the diagnosis often helps to contextualize various symptoms the parents did not know were related to autism (Mansell & Morris, 2004; Midence & O’Neill, 1999). This may also be a contributing factor to the high levels of understanding we found, as the children in our study had already received a diagnosis of ASD prior to the intake appointment.

Acceptance

Researchers have demonstrated parents who accept their child's ASD diagnosis are better prepared to support them on the treatment journey and tend to have a more positive perception of their child (Gentles et al., 2020; Shilubane & Mazibuko, 2020; Yaacob et al., 2022). Parents who accept their child's diagnosis are less likely to show symptoms of depression (Da Paz et al., 2018), and it has been shown that the acceptance itself serves as a partial mediator between problematic behaviors exhibited by their child and the parent's mental health (Karst & Van Hecke, 2012). Acceptance has also been shown to be a driving factor in parents taking initiative in learning more about ASD (Gentles et al., 2020) and in implementing positive help-seeking behaviors (Kurz, 2018). It also improves the parent's ability to attune to the needs of their child with ASD (Milshtein et al., 2010; Wachtel & Carter, 2008). Our findings show most parents accept their child's ASD diagnosis, which is consistent with research conducted by Poslawsky et al. (2014) where the Reaction to Diagnosis Interview (Sher-Censor et al., 2020) was used post-diagnostically to gather data on parental reactions to their child's ASD diagnosis. ASD prevalence rates have risen across the country in recent years and the CDC (CDC, 2020) now estimates that 1:44 children have ASD, as compared to 1:68 estimated by the CDC in 2018 and 1:88 in 2008. This rise in prevalence has contributed to decreased stigma associated with ASD (Obeid et al., 2015; Yu et al., 2020), which is a potential contributing factor to the high rates of acceptance we found. The positive relationship we found between acceptance and understanding may also explain the high levels of acceptance among the parents in our study, as most parents demonstrated an understanding of ASD in their responses.

Emotion

When a parent learns their child has ASD, it is an emotionally complex process, marked by a range of emotional experiences (Makino et al., 2021; Wong et al., 2017). While less than half of the parents in our study demonstrated an emotional response to their child's diagnosis of ASD, those who did respond demonstrated a wide range of emotions. Of these, two-thirds of the respondents exhibited positive emotions, with one-third exhibiting negative emotions. Since the children of the parents in our study have already received their ASD diagnosis, it is possible their emotional experiences are more representative of their hope for the future than their search for answers (Edwards et al., 2018).

Our research also found that the parents of older children were more worried and less motivated than the parents of younger children. We suspect that parents of older children may feel receiving their diagnosis later in the child's development could lead to more challenges in treatment than if they had received their diagnosis at a younger age. In addition to this, older children are closer to the age of “launching” into the world either to college or work, and parents may feel discouraged about the possibilities for their child's future.

Coping

We found that most parents were actively coping with their child's ASD diagnosis, most commonly through learning and seeking help. Our findings are consistent with Gentles et al. (2020, p. 470) who showed upon receiving the diagnosis, parents “come to understand their child has autism – on their own terms” which serves as motivation to learn more and seek help. Of the parents who demonstrated avoidant coping, we found that the most common theme was processing which is likely a necessary step for parents to take before engaging in more active coping strategies.

Clinical implications

Children with ASD and their families have historically “belonged” to the developmental disability community, resulting in MFTs feeling apprehensive to work with these families (Solomon & Chung, 2012). However, MFTs should feel empowered to contribute their unique perspective as the impact of a diagnosis of ASD can be significant on the family, with this in mind, family-centered treatment is a needed area of growth. Families with a child with ASD may experience marital challenges, struggle with difficult emotions, experience financial hardship, or have difficulty balancing the needs of other children alongside their child with ASD. MFTs are well-suited to support these families to address stress and anxiety often associated with having a child with ASD (Solomon & Chung, 2012).

Our findings provide qualitative evidence that many parents have at least some understanding of their child's ASD diagnosis and are accepting of this diagnosis, which shifts the landscape of intervention from a psychoeducation and acceptance perspective to practical skill development and adjusting perspective. MFTs have the skills to support these families systemically in implementing skills across the family and adjusting family expectations. Additionally, this therapeutic approach can simultaneously support direct intervention with the child with ASD by bolstering family buy-in and including the whole family (Factor et al., 2019; Osborne et al., 2008). Our research supports a newer phenomenon where parents of children with ASD are more informed about what autism is, as well as more accepting of it.

Nevertheless, there was a proportion of parents who had a limited understanding of ASD, had not yet fully accepted the diagnosis, were experiencing negative emotional responses, or were coping avoidantly. These parents are potentially at risk for increased mental health concerns which could affect their ability to support the full range of needs their child will experience as they progress through treatment (Osborne et al., 2008), as well as have a negative impact on the well-being of the family unit (Benson, 2010; Bitsika & Sharpley, 2004). MFTs can help ensure these at-risk parents are identified early and provided with adequate support. Evaluating relationships within the family and how they react to other stressful situations could help identify patterns of behavior, both healthy and unhealthy (Kurz, 2018). Additionally, for parents who demonstrated limited understanding, additional support and psychoeducation will be needed. With respect to these findings, MFTs can consider an in-depth assessment of understanding in their evaluation of the family to assist in identifying and supporting these at-risk families.

Acceptance is foundational in parental preparedness for treatment and supporting their child as it impacts emotional responses and ability to cope (Da Paz et al., 2018; Yaacob et al., 2022). Our study revealed parents are more likely to accept the diagnosis when they have a greater understanding of ASD, thus, a primary intervention for families who have not yet accepted their child's diagnosis is to help improve their understanding. MFTs can help facilitate this understanding through therapeutic intervention, directing families to the growing body of online and book resources to supplement therapy, as well as bolstering their own knowledge of ASD so they can in turn bolter parents’ knowledge.

Emotional support for families and intervention for the child with autism are equally important when developing a comprehensive treatment plan (Solomon & Chung, 2012). When parents present as being overwhelmed in response to their child's ASD, they are at risk of disproportionately prioritizing the child's ASD treatment over the emotional support needs of the family. Family therapy provides the much-needed space to address their own emotional support needs which can create a stronger environment for direct treatment with the child (Osborne et al., 2008; Solomon & Chung, 2012).

In times of stress, parents tend to rely on existing coping strategies they are comfortable with to manage their stress. Therefore, when a child receives an ASD diagnosis, families will likely employ known methods of coping (Lin et al., 2008). When assessing a family with a child with ASD, MFTs can inventory the family's existing coping strategies, including their use of social supports, as families with meaningful social support tend to adjust better (Bitsika & Sharpley, 2004; Karst & Van Hecke, 2012). Furthermore, MFTs are encouraged to pay particular attention to families who leverage avoidant coping strategies, as these have been directly linked to stress, anxiety, and depression among family members (Kurz, 2018). MFTs are trained in understanding and shifting systemic dynamics as well as teaching adaptive coping to families (Solomon & Chung, 2012), which positions them well in helping families to replace any existing avoidant coping strategies with adaptive ones. Thus, early work on coping mechanisms within families will be pivotal as new stressors related to ASD arise while keeping in mind effectiveness of coping strategies will vary among families based on their contextual factors (Ismael et al., 2018; Lyons et al., 2010).

Limitations and next steps

Our sample for this study included only parents who live in California, which has the highest prevalence rate of ASD in the United States (1:26 in CA, as compared to 1:44 nationally; Maenner et al., 2021). It is not yet known why California's prevalence rate far exceeds that of the rest of the country, and as such, we cannot yet generalize the findings of this study to other states.

Data were gathered an average of 75 days after diagnosis was received, allowing parents some time to process and access available educational resources on ASD. Prior studies on parental response to their child receiving a diagnosis of ASD have analyzed data gathered closer to the time the diagnosis was received (Bravo-Benítez et al., 2019; Gentles et al., 2020; Heiman, 2021; Makino et al., 2021). It is not known whether these additional 75 days had an impact on parental response and acceptance.

Data for our study were gathered from a survey designed to assist clinicians in determining the treatment modalities best aligned with the needs of the family. Parents were asked specifically about their understanding of their child's ASD diagnosis in the survey, and responses to this question were analyzed for our study. Because the question was not specifically designed to gather data on all four of the themes we identified in our thematic analysis, and because the assessors were not specifically looking for these themes in the responses, it is possible that additional relevant information was provided by parents but not documented in their survey response. Therefore, while our findings can be considered representative of our sample, they should not be considered exhaustive.

The strengths of this study include that the data were gathered in a real-world setting with parents who were actively engaged in the treatment process. Therefore, our sample represents parents experiencing ASD in real-time and in real settings rather than in a controlled environment, which allowed for a wider range of variables impacting overall experience and perceptions.

Our data corpus was significant in size and included many supporting clinicians over multiple years, for these reasons we believe our sample was a good representation of the community at large and the effect of clinician bias in the analysis of their documented responses was removed. Also, as we excluded from our sample any parents of children with cooccurring conditions beyond ASD and ID, we can have greater confidence that the data gathered were in fact in response to ASD diagnosis and not influenced by the reaction parents may have had to other existing conditions.

Further investigation into the parental response to their child's ASD diagnosis is warranted in states other than California, closer to the time of diagnosis, and among families who have not yet initiated seeking treatment. Researchers are also encouraged to study the impact of parental response to diagnosis on overall treatment outcomes. As the prevalence of ASD continues to rise, MFTs are likely to see more families with ASD seeking family therapy. As there is a paucity of research demonstrating the outcomes of family therapy for this population (Karst & Van Hecke, 2012; Kurz, 2018), further research is recommended.

Conclusion

In conclusion, our findings demonstrate parents who are entering treatment for their child with ASD generally understand the diagnosis, have accepted that their child has ASD, are actively coping, and when they have an emotional response, it is more likely to be positive than negative. Parents who present in this way may be better prepared to begin the treatment journey, however, families may need support from their MFT to learn strategies for applying their active coping strategies to future challenges they face throughout treatment, and to process negative emotions as they arise. MFTs should pay close attention to the families who are less prepared when beginning treatment, as these families will need support in responding to their child's diagnosis, and in building foundational skills they can leverage throughout the treatment journey. MFTs are well-positioned to help all families prepare to support one another as their child begins treatment for ASD. Through tailoring treatment plans to promote understanding and acceptance, while providing families with the necessary tools and coping strategies to manage difficult emotions, MFTs can be a key resource for families throughout their treatment journey.

Footnotes

Author note

Data available on request from the authors.

Declaration of Conflicting Interests

The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

The author(s) received no financial support for the research, authorship, and/or publication of this article.

ORCID iD

Michelle Befi

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