Autistic Children: And Who Takes Care of the Parents? Proposals and Improvements for Public Policies in Support of Families with Children with ASD ()
1. Introduction
1.1. What Is Autism Spectrum Disorder?
Autism Spectrum Disorder (ASD) is a heterogeneous group of neurodevelopmental phenotypes that involves subjective clinical concepts with three levels of impairment, a chronic and non-degenerative course, which help guide the evaluation and diagnosis of children with ASD. It is also understood as “a complex behavioral syndrome with multiple etiologies, combining genetic and environmental factors” [1].
According to the American Psychiatric Association (APA), “ASD shares core symptoms involving impairments in three specific areas of development: deficits in social skills, deficits in communicative abilities (both verbal and non-verbal), and the presence of repetitive, restricted, and stereotyped behaviors” [2]. The syndrome is categorized into three distinct levels of support—1, 2, and 3—according to the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders [3]. Cohen [4] emphasizes that “clinical manifestations of ASD occur before 36 months of age and become more noticeable, especially when the child is placed in a social context.”
Barbaro [5] and Daley [6] explain that this disorder has biological bases that are only partially understood and that diagnoses should be based on both the individual’s history and behavior. Furthermore, as the term “spectrum” suggests, it is scientifically proven that intellectual capacity varies among individuals with ASD. That is, it can range from profound impairment to above-average intelligence, according to the Pan American Health Organization [7]. These complexities justify the need for support in behavioral, educational, familial, health, leisure, and other areas [2].
Studies on ASD have been conducted in several countries since 1942, when it began with the term “affective contact disorder,” coined by Kanner [8]. Since then, it has gone through a long timeline of concepts until reaching the DSM-5 (Diagnostic and Statistical Manual of Mental Disorders), with the concept of three levels of support. The trend is that, with technological advances and new studies, new findings and new terminologies will emerge, allowing the observation of the past to serve as a basis for understanding the future. According to Silva and Mulick [9], “ASD is a disorder that affects people all over the world, in families of every racial, ethnic, and social configuration.”
Regarding public policies, according to Cavalcante [10], government initiatives related to ASD were late, a fact that ended up creating two different groups that historically developed actions simultaneously in favor of individuals with autism. The first group consisted of those involved in actions linked to public mental health policies within the SUS (Unified Health System). The second group was made up of associations of families and parents of children with autism, who began to take action for the benefit of their children.
From the actions developed by these two social groups, as well as from the actions related to mental health, public services began to have a greater role in the care pathway for children with ASD. According to Cabral [11], in social assistance policy, it is necessary to implement and carry out public actions in the health sectors, training these bodies for the inclusion of People with Disabilities from the perspective of intersectorality.
Given the above, the relevance of programs that support the parents of these children emerges, especially in the implementation of actions that both prevent and intervene in the process of adaptation and family support, aiming to strengthen self-esteem, hope, and the desire for change [12]. Therefore, the focus of this technological study is on preventive and interventional public policies for families with children with ASD. It is about observing how the diagnosis of a child with ASD changed the lives of the parents, what events occurred when seeking health assistance for their children, and how the adaptations to this new reality took place.
The reasons for studying this technological article include, in addition to the few studies related to the topic, the near absence of public policies aimed at families of children with ASD. The public authorities must consider that today’s children with ASD will be tomorrow’s adults with ASD. Thus, a project is proposed to welcome the parents of children with ASD, as a complement to the actions of the public policy project related to the construction of the first Reference Center for Care of People with Autism Spectrum Disorder, in Teresina, in the state of Piauí.
1.2. Consequences of an ASD Diagnosis for the Family
First and foremost, it is important to highlight that other studies support the findings of this technological article, albeit from different perspectives. These studies emphasize that mothers of children with ASD experience significantly higher levels of stress and lower levels of psychological well-being compared to mothers of children without ASD [13]-[15]. Smith et al. [16] even compare the stress experienced by parents of children with ASD to that of soldiers in combat. Therefore, it is clear that addressing this issue is a matter of public health. However, little is known about the interventions provided by public authorities to support these parents.
In this context, it is important to recognize that the first shock for parents is the diagnosis itself. Christofari and Baptista [17] emphasizes that children with ASD should not be labeled, as they are not defined solely by autism. In reality, they present a combination of symptoms, conditions, and behavioral patterns. He also notes that some symptoms involve issues that people are already familiar with, while others involve stigma and social exclusion, which make life even more difficult for parents.
An unexpected ASD diagnosis is the most difficult phase for parents, as it represents an emotional loss [18] [19]. According to Sá and Rabinovich [20], “the birth of a child with special needs can interrupt the dream with reality, causing a shock for the mother, as the imagined child is replaced by a real being, different from what was expected.” After discovering their child has ASD, “this moment becomes one of pain, tears, frustration, anguish, fear, insecurity, and many other emotions” [21]. Sadness, according to Brunhara and Petean [22], “reveals feelings of disappointment, frustration, hurt, and distress in the presence of a child who was not the one dreamed of.”
Raines [23] reports that parents go through five stages after an ASD diagnosis. First is the initial stage of grief, marked by shock, crying, feelings of helplessness, and a desire to escape. The second stage involves denial of the diagnosis; the third brings anxiety, more crying, and the emergence of anger. In the fourth stage, there is a sense of balance, and in the fifth, parents undergo a process of reorganization, reintegrating and recognizing the child within the family. In this final stage, “parents enter a process of adaptation, marked by emotional instability, as moments still fluctuate between acceptance and rejection” [20]. Some families report ongoing grief after the diagnosis, as the impact of this discovery brings constant concerns about how to navigate this new reality [9].
According to Nogueira and Rio [24], parents’ questions are constant, permeating their daily thoughts and causing anxiety. For example: “Who will take care of my autistic child when I die? Who will take my place as a caregiver when I am gone? What will their life be like without me?” Most parents wish to die after their children so they won’t be left alone [25].
It is perceived that in this new family context, “the birth of a child with ASD is an unexpected event that strongly affects its structure. If this family is not able to positively accept the event, adapting to the new patterns of this relationship,” seeking to find balance, there is a great possibility that it will become dysfunctional and may even separate [26].
Families of children with ASD begin to experience in their daily lives a vulnerability caused by the fear of the new situation and the prejudice that society demonstrates [27]. Even within the family itself, there is veiled prejudice that, at any moment, erupts when it comes into contact with the new family and social reality. Bosa [28] reports that “mothers of children with autism show significantly higher levels of stress and depression, as well as lower marital intimacy than mothers of children with typical development and mothers of children with Down syndrome.”
Miller [29] understands, on the one hand, that the sadness felt by parents is chronic and is never fully experienced or overcome. On the other hand, it becomes stronger on important dates in the lives of children with ASD, and he gives examples such as birthdays or when they go to school.
Hastings et al. [30] highlight as a result the stress and coping that fathers and mothers of children with autism have to face continuously, especially when the children are young. Benson and Karlof [31] emphasize that the more symptoms the child with ASD has, the greater the parents’ stress. Gomes et al. [32] argue that coping with this situation depends on some factors: “the severity and type of the child’s impairment, the meaning that each family attributes to the disability, the family’s sociocultural level, and each person’s capacity for adaptation.”
1.3. Current Public Policies for Children with ASD
In Brazil, public policies for individuals with Autism Spectrum Disorder (ASD) were implemented quite late. Until 1988, there were no actions in place to benefit individuals with ASD. It was only in 2002, after the creation of the Unified Health System (SUS), that an administrative ordinance was published, including procedures related to patients with mental health issues and ASD in the SUS Outpatient Information System (SIA/SUS). Only 24 years after the creation of SUS, Law No. 12.764/2012 was enacted, establishing the “National Policy for the Protection of the Rights of Persons with Autism Spectrum Disorder” [33]. This marked the first public initiative specifically aimed at individuals with ASD.
With the publication of Ordinance No. 324 on March 31, 2016, the “Clinical Protocol and Therapeutic Guidelines for Aggressive Behavior in Autism Spectrum Disorder” was approved [34]. According to this ordinance, the diagnosis of ASD should be clinical and differential, and the diagnostic information should include: “the level of verbal and non-verbal communication, intellectual level, range of interests, family and educational context, and the individual’s capacity for autonomous living” [34]. In 2020, Law No. 13.997/2020 created the Autism Spectrum Disorder Identification Card (CIPTEA), which “ensures comprehensive care, prompt service, and priority access to public and private services, especially in the areas of health, education, and social assistance.” This was a milestone in advancing the inclusion of individuals with ASD in society [35].
At the state level, Piauí has stood out in developing public policies for individuals with ASD. In 2022, the state government enacted Law No. 7.761, guaranteeing individuals with ASD “the right to engage in work activities compatible with their skills, education, experience, and preferences, and prohibiting discrimination” [36]. On February 13, 2023, Law No. 7.963 was enacted [37], originating from Bill No. 40 (2022), establishing “administrative penalties for individuals or public agents who discriminate against people with autism in the state of Piauí.” Law No. 7.960 [38] was also enacted, originating from Bill No. 175 (2022), amending Law No. 7.468 (2021) to include adult individuals with autism and their companions in adapted cinema sessions.
For the coming years, there is a project to build the first “Reference Center for Autism Spectrum Disorder Care,” scheduled for completion in 2024, in Teresina. This center will include consultation rooms, observation rooms, a nursing station, sensory rooms, parental support areas, training rooms for families, a family kitchen, social assistance rooms, therapy rooms, a pool with accessible changing rooms, landscaped outdoor areas, reception areas, a playroom, a 114-seat auditorium, accessible restrooms throughout the facility, and administrative and operational areas.
2. Methodological Approach
This research is qualitative, exploratory, and descriptive. Qualitative research allows for the observation of facts as they occur naturally, aiming to understand the phenomenon under investigation from the perspective of those experiencing it. In this context, a questionnaire was applied to parents of children with ASD to build a theoretical framework supporting the technological proposal of the “Aldeia Project” guide.
Exploratory research enables the researcher to understand a subject that is still little known or explored, while descriptive research goes beyond merely identifying the existence of relationships between subjects. It also explores the qualitative aspects of these relationships, with a focus on the broader social group [39] [40].
The target population of this study consisted of parents of children with ASD, encompassing 70 families assisted by three specialized autism clinics located in São Paulo, Rio de Janeiro, and Curitiba. Of these, two families chose not to participate, resulting in a final sample of 68 families with children diagnosed with ASD.
For data collection, a standardized questionnaire was made available to parents via Google Forms. It included six sociodemographic questions (age, gender, marital status, number of children), 20 closed-ended questions, and 17 open-ended questions. For the closed-ended questions, a questionnaire adapted from Balestro [41] was used, employing a five-point Likert scale ranging from 1 [Strongly Disagree] to 5 [Strongly Agree]. The open-ended questions were developed based on the theoretical framework discussed in this article, which helped strengthen the ideas, justifications, and arguments that formed the basis of the proposed project.
This research also adhered to Resolution No. 510/2016, which regulates “research involving human beings in the human and social sciences” [42]. The clinic administrators who collaborated with the study signed an “Institutional Authorization Term,” while the participating family members signed a “Free and Informed Consent Form,” which guaranteed their privacy rights and the freedom to withdraw from the study at any time, as an independent document. Please do not revise any of the current designations.
3. Study Results
The sociodemographic profile of the study participants is detailed in Table 1, based on data collected through the administered research instrument. The findings indicate a predominance of female respondents (56.8%), with male participants comprising 43.2% of the sample. In terms of age distribution, the majority of individuals fall within the 31 - 45 age range (66%), followed by those over 45 years of age (22%) and a smaller proportion aged between 17 and 30 years (12%).
Regarding marital status, a significant portion of the sample reported being in a common-law relationship (37%) or legally married (32%), accounting for 69% of the total. Conversely, 31% of respondents identified as single, separated, or divorced. Notably, a considerable number within this group are single mothers or fathers, suggesting the presence of diverse family structures within the population under study.
The responses to the question “When you found out your child had ASD, what did you feel?” were collected from 68 participants. These responses revealed a range of emotions, including concern, confusion, loneliness, fear, and helplessness. The diagnosis clearly has a significant emotional impact on parents. The letter (E) refers to the interviewee (Figure 1).
Table 1. Sample profile.
Dados demográficos |
|
n |
% |
Gender |
Male |
29 |
43.2 |
Femele |
38 |
56.8 |
Age |
Between 17 and 30 years |
8 |
12 |
Between 31 and 45 years |
44 |
66 |
Over 45 years |
15 |
22 |
Marital Status |
Married |
21 |
32 |
Single |
8 |
12 |
In a stable union |
25 |
37 |
Separated |
6 |
8.9 |
Divorced |
7 |
10.1 |
Numeber of children with Autism in the family |
One chind |
42 |
63 |
More than one child |
25 |
37 |
Do the Parents Live
Together? |
Yes |
46 |
69.1 |
No (single mothers) |
15 |
22 |
No (single fathers) |
6 |
8.9 |
Total Sample Size |
|
68 |
100 |
Figure 1. What was felt upon the ASD diagnosis.
In Figure 2, the researcher highlighted responses from single mothers and fathers. The responses reflect the emotional toll on mothers as primary caregivers, with narratives differing slightly from those of fathers, but both echo Nunes [43], who notes that the loss of the imagined future creates a sense of mourning and uncertainty. This emotional burden affects the quality of life of these families due to frequent stress [32].
Figure 2. What was felt upon the ASD diagnosis (single mothers and fathers)”.
Fathers and mothers faced with an ASD diagnosis, having to care for their children alone, first experiencing shock, followed by fear and insecurity. According to Pinto et al. [44], “the experiences lived by family members at the time of diagnosis are intensified due to a lack of knowledge about ASD.” And as Takeda [45] points out, all social rejections directed at people with disabilities—especially those on the autism spectrum—are rooted in prejudice and discrimination. Another aspect observed in the study was the impact on parents’ professional lives.
For mothers, the diagnosis often led to greater sacrifices. Many reported leaving their jobs to dedicate themselves entirely to their children. This is supported by Pinto et al. [44], who found that such sacrifices are more common among mothers. Smeha and Cezar [46] also emphasize that the responsibility of caring for an autistic child typically falls on the mother, who often gives up her career to focus exclusively on her child. This is illustrated in Figure 3.
In light of the sacrifices made by the parents of children with ASD, as observed above, Walsh [47] emphasizes that “the ability to overcome adversity in times of crisis is called resilience”. It is at this moment that support must also be provided to these parents through public policies that promote the strengthening and growth of inclusion, as well as educational programs for society regarding all types of disabilities.
Figure 3. Parenting and work balance.
Public authorities play a crucial role in equipping society to address the challenges faced by families of children with disabilities. This includes fostering inclusive values and offering educational programs that promote understanding and acceptance. As Walsh [47] emphasizes, “It is not enough to encourage the resilience of children and families at risk so that they can ‘overcome obstacles’; we must also fight to change the obstacles that are placed in their way.”
In this context, participants were asked: What do you think could be done to change or improve your life? A summary of 68 responses is presented in Figure 4.
Figure 4. What could be done to improve the lives of fathers.
It is noticeable that the fathers’ responses revolve around concerns related to work, health insurance, inclusion, support networks, depression, public healthcare, and financial independence. These fathers play a unique role in their children’s development but lack support when it comes to taking care of themselves. They would like to feel more secure in their professional lives. Mothers wish to feel useful to society. A sense of insecurity permeates their daily lives, and public authorities could be more involved in this regard.
Figure 5. Negative reactions from Family members upon receiving the ASD diagnosis.
Figure 6. Positive reactions from family members upon receiving the ASD diagnosis.
When asked how family members reacted upon learning of the child’s autism diagnosis, the reports show reactions of denial (Figure 5), positive responses such as acceptance from the beginning, and even a certain neutrality (Figure 6). It is evident that family members expressed how difficult it was to receive the child’s autism diagnosis. Most of them responded with denial, in a mix of fear and insecurity.
Receiving a diagnosis of a chronic illness or syndrome, such as ASD, is often a deeply challenging moment for families. It brings a mix of emotions—fear, insecurity, shock, and frustration. As Ebert et al. [48] note, “the birth of a child marks the beginning of a new life cycle, one that is idealized by parents and the entire family. However, when this plan is disrupted, all family members are affected.”
Despite this rupture, some families respond with acceptance, offering support and care to the parents. Maughan et al. [49] highlight that Acceptance and Commitment Therapy (ACT) can be a valuable approach for caregivers facing symptoms of depression and stress. Rooted in the third wave of behavioral and cognitive therapies, ACT does not aim to eliminate negative thoughts and emotions but rather to help individuals accept their internal experiences and commit to actions aligned with their values [50].
Regarding the question about the need to revise working hours to stay at home more to take care of the child, the responses shown in Figure 7 range from total resignation to a reduction or maintenance of the workload. There are also cases of mothers who chose to study, not to mention those who do not work.
Figure 7. Decisions made by mothers after receiving an ASD diagnosis.
It is very difficult for parents—especially mothers—to experience the differences that society often imposes: men work while women stay at home. Soares and Carvalho [51] state that “when women do not conform to the expectations of patriarchal representation, the processes of blaming them are extended,” because when a family breaks its marital bond, it is expected that the woman will take on the entire burden, giving up everything—physically, culturally, and professionally.
According to Sprovieri and Assunção [52], mothers often end up leaving their jobs because they cannot find anyone to care for their children. As a result, they are forced to miss work, which almost always leads to quitting or being dismissed from their jobs. In light of this, it becomes clear that these mothers, “even while living in a sea of uncertainty about the future and what life will be like for their children, experience the birth of an unconditional love at that moment—one capable of facing any and all obstacles that life may still impose” [53].
It is believed that once the Provisional Measure (MP) that initiated the ratification process of ILO Convention No. 156 [54], titled “Equal Opportunities and Equal Treatment for Men and Women”, is enacted, workplace and family responsibility-related discrimination will be reduced. This convention provides an additional tool in the fight for the rights of families who wish to maintain their jobs while also caring for their children with disabilities.
Regarding health insurance, parents were asked whether or not they had coverage. Only 10% of respondents reported not having health insurance. However, among those who do have a plan, there is an ongoing struggle with court orders imposed on health insurance providers that are not being followed. These are distressing accounts that deserve public support.
Another aspect addressed in the study concerns the social and psychological well-being of the parents—whether they take prescription medication, go to the movies, what kind of leisure activities they engage in, how they take care of themselves, and how much time they dedicate to being with friends. According to Figure 8, it is evident how much they lack quality of life, not enjoying leisure moments, and may even rely on prescription medication. In other words, there is no time for either personal or mental self-care.
Figure 8. Leisure activities of parents.
It is important to highlight that the intense dedication of mothers—focusing on caring for their child, husband, household tasks, and other children, if any—can lead to physical and mental health issues. According to Barbosa and Fernandes [55], leisure is one of the essential resources for maintaining quality of life, especially for parents who live directly with children diagnosed with ASD.
In the question related to parents’ greatest fear regarding raising a child with ASD, the answers encompass concerns about the future, lack of financial and emotional support, discrimination, lack of social support, and insufficient development for a more functional life, as shown in Figure 9.
The responses highlight parents’ worries about the future of their children, who are extremely dependent. They also express frustration upon witnessing discrimination and realizing that people feel uncomfortable with the presence of an autistic child—an act of prejudice. Furthermore, any offense directed at the child is perceived as if it were directed at the parents themselves. Due to prejudice and discrimination, parents tend to become even more overprotective, viewing their children as fragile and defenseless. This perception further shapes their concern for their children’s future.
Figure 9. Main concerns of parents.
In light of these responses, it is evident that the social issue is much broader. These children will grow into adults who will not have their parents forever, which is a distressing reality for all respondents. Gomes et al. [32] “support the idea that social support and care programs for parents and/or guardians are important tools for overcoming family vulnerabilities in the presence of a member with ASD.” All respondents express concern about their children’s future.
However, mothers tend to take on this responsibility more heavily, which is consistent with the studies by Cardoso and Françoso [56] and Gomes et al. [32]. These studies highlight the relationship between mother and autistic child, emphasizing the mother’s concern with care, inclusion, and health. They also point out that the greatest concern is what will happen to the child when the mother is no longer present.
3.1. Study Results—Closed-Ended Questions
For the closed-ended questions, a questionnaire adapted from Balestro [41] was used, applying a five-point Likert scale ranging from 1 [Strongly Disagree] to 5 [Strongly Agree]. Descriptive statistics were calculated for each question, as shown in Table 2.
Table 2. Descriptive statistics.
Question |
Mean |
Standard Deviation |
Minimum |
Maximum |
I am concerned about my child’s future. |
4.882 |
0.561 |
1 |
5 |
I feel that public authorities are neglectful regarding the situation of individuals with Autism Spectrum Disorder (ASD). |
4.544 |
0.679 |
2 |
5 |
I truly need time for myself. |
4.544 |
0.836 |
1 |
5 |
I would like to have time to take better care of myself. |
4.485 |
0.889 |
1 |
5 |
I miss having a social environment in my life. |
4.147 |
0.981 |
1 |
5 |
I have the impression that people do not understand what my child is trying to communicate. |
4.088 |
1.129 |
1 |
5 |
I feel alone. |
3.985 |
1.275 |
1 |
5 |
I have difficulty understanding what my child feels. |
3.471 |
1.227 |
1 |
5 |
I do not know how to respond to some of my child’s behaviors. |
3.441 |
1.297 |
1 |
5 |
I do not know how to act when my child does not understand me or when I do not understand them. |
3.279 |
1.280 |
1 |
5 |
I have difficulty communicating with my child. |
2.779 |
1.359 |
1 |
5 |
I have difficulty playing with my child. |
2.691 |
1.538 |
1 |
5 |
I have made plans for my child in case something happens to me. |
2.632 |
1.515 |
1 |
5 |
I do not feel comfortable in public places with my child. |
2.618 |
1.476 |
1 |
5 |
I have difficulty communicating with my child when other people are present. |
|
|
|
5 |
I have the impression that people mock my child when they try to communicate something. |
2.382 |
1.282 |
1 |
5 |
I have the impression that my child does not understand what I say. |
2.368 |
1.434 |
1 |
5 |
I have been sleeping more. |
2.029 |
1.360 |
1 |
5 |
I have difficulty communicating with my child when it is just the two of us. |
1.941 |
1.157 |
1 |
4 |
If I could leave everything behind and walk away, I would. |
1.941 |
1.465 |
1 |
5 |
Source: Research data (2024).
The data indicate that parents agree that they are concerned about their child’s future; they feel that the government is neglectful regarding the situation of people with ASD; they need time for themselves; they would like to have more time for self-care; they miss having a social environment in their lives; and they feel that people do not understand what their child is trying to communicate. The data also suggest a tendency to agree with the perception of feeling alone.
The data also show disagreement regarding difficulties in communicating with their children, having contingency plans, not feeling comfortable in public with their child; having difficulty communicating with their child when other people are around; and having the impression that people mock their child when they try to communicate something, or that the child does not understand what the parents are saying. In other words, parents do not face these challenges in their daily lives. However, they are no longer sleeping.
Parents remain neutral regarding having difficulty understanding what their child feels; not knowing how to act in response to certain behaviors; or when neither party understands the other. The low standard deviation indicates little variability in responses among participants.
The World Health Organization (WHO) and the Federal Constitution of Brazil (CFB) guarantee the same rights for individuals with ASD as for other citizens, along with other laws and regulations in this regard. The issue lies in the organization of more inclusive public policies directed toward individuals with ASD and their families. This can be observed through the increase in the number of beneficiaries covered by private health insurance plans. On August 7, 2023, the National Supplementary Health Agency (ANS) reported that 50.8 million Brazilians are currently covered [57].
According to Gaiato [58], “it can be said that around 600,000 children and adolescents show some symptoms of ASD, just in public schools.” “It is estimated that most of these children and adolescents do not receive the necessary treatment for their development in Brazil,” which is concerning [32]. Suppo and Floyd [59] also point out that, When properly guided, parents can become facilitators of positive changes in their children’s development, as they are considered essential partners in the treatment.
3.2. Proposals for Improving Public Policies in Support of Families
with Children with ASD
Given the above, it is believed that public authorities could play a stronger role in supporting the parents of children with Autism Spectrum Disorder (ASD). This is a matter of public health. In this regard, Resende [60] argues that “[…] the rule of isonomy is the structural beam of society. Its existence also implies respect for individual differences and the obligation to provide services that meet the needs of all, regardless of citizens’ conditions.” According to Nogueira and Rio [24], “family concerns are mostly related to what can be done by public and/or private entities to defend the rights of the child and ensure the continuity of their care.”
Therefore, a support project for parents of children with ASD is proposed, as a complement to the actions of the public policy initiative related to the construction of the first Reference Center for the Care of People with Autism Spectrum Disorder in Teresina, in the state of Piauí. In other words, this proposal to improve public policies in favor of families with children with ASD is called the “Aldeia Project,” a parental support initiative. The choice of this name was inspired by an African proverb: “It takes a village to raise a child.” It is a proposal for a supportive village for the parents of children with autism.
The structure of the Aldeia Project, which outlines the proposal, the interventions with parents and children with ASD, how parents can access the Project, and the organizational chart of the Project, can be found in Appendix A. In other words, it includes some guidelines, foundations, and the applicability of a differentiated methodology to facilitate public administrators’ understanding. Figure 10 presents the proposed organizational chart for the Aldeia Project.
Figure 10. Proposed organizational chart for the Aldeia Project. Source: Research data (2024).
4. Final Considerations
The rights guaranteed to individuals with ASD range from the right to health and social assistance, education, employment and social security, tax exemption, accessibility, sports, culture, and leisure, among others. It is not enough to focus solely on the individuals with ASD without including their families in public policies, as these families need to be supported and assisted through inclusive and welcoming actions.
In this technological article, it was possible to observe the suffering and anguish experienced by parents and family members upon receiving an ASD diagnosis—a moment that triggers many conflicting emotions. Most families manage to adapt to the limitations, but often find it difficult to cope with the challenges that arise in daily life. O’Brien [61] highlights that parents of children with ASD are aware that this condition is lifelong, that it is stressful, and at the same time a daily struggle. Even so, these parents demonstrate a remarkable degree of resilience.
Finally, it is hoped that this study can contribute to the development of strategies to support and welcome families of children with ASD, starting from an understanding of the vulnerabilities they face, the recognition they need, and the support required to share the practical responsibilities of daily care for their children. Further studies in this area are necessary, with a larger and more diverse sample, including autistic adolescents and adults, to highlight the ongoing needs of parents throughout their children’s development. This would allow for more specific contributions that address the concerns of these parents and the implications of public policy related to social security.
It is important to understand that autism brings about changes within the family. The parents who participated in this study likely find renewal and comfort in the new meanings they begin to assign to their lives and daily activities—emerging stronger, reorganizing commitments and responsibilities, and giving life a sense of continuity, as if it were a mission. Adapting to change and continuing to grow is generally a process built over time, not a sudden achievement, and it is perhaps this process that allows them to preserve their mental health.