I AM AN AUTISTIC MOTHER WITH AN AUTISTIC CHILD”: DOCUMENTARY ANALYSIS OF FAMILY OVERLOAD

Objective: The study aims to explore the experience and burden faced by autistic mothers who also have autistic children, with the aim of understanding the specific difficulties these mothers face and identifying practices that can alleviate this burden. Methodology: The research was conducted through a documentary analysis of sources such as specialized websites, books and social media profiles, with a theoretical approach that includes thematic analysis and cognitive-behavioral therapy (CBT). The analysis focused on how autistic mothers experience and cope with motherhood and the associated burden. Results and Analysis : The results show that autistic mothers face unique challenges related to sensory and emotional overload, stigmatization and lack of specialized support. Often, the mother's autism diagnosis occurs after the child's diagnosis, which exacerbates feelings of exhaustion and guilt. The analysis revealed that, although there are useful strategies and practices to cope with these difficulties, such as establishing routines and community support, there is a lack of specific interventions aimed at the needs of these mothers. Acceptance of autism and understanding the specific needs of autistic mothers are crucial to improving their quality of life. Conclusion: The research concludes that the neurodiversity paradigm and cognitive-behavioral therapy are fundamental to addressing the issues faced by autistic mothers with autistic children. Acceptance of autism as an integral part of these mothers’ identity and adaptation of interventions to recognize and value their specific strengths and challenges can help reduce family burden. Support strategies that include clear and adapted communication, specialized support, and self-care practices are essential to improving the motherhood experience of these women.


INTRODUCTION
Autism, Autism Spectrum Disorder or ASD is a neurocognitive variation that manifests itself in the early years and a diagnostic classification of mental disorders listed in the International Statistical Classification of Diseases and Related Health Problems-tenth edition (ICD-10) and the Manual Diagnosis and Statistics of Mental Disorders -fifth revised edition (DSM-V-TR).By the beginning of 2025, it is estimated that we will have in Brazil the official use of ICD 11 translated and validated for our historical-cultural context.Autism, according to the aforementioned diagnostic manuals, causes damage in two areas of human neurodevelopment: social communication and restricted and repetitive patterns of behaviors, activities or interests.It is important to specify whether the autistic person has an intellectual disability or not and the level of support that is necessary to exercise their rights and duties as a citizen.According to the DSM-V-TR, the level of support may be different in the area of social communication and in the area of cognitive and behavioral flexibility.Also, it can change throughout life.
For the neurodiversity paradigm , Walker (2021), claims that autism is an intrinsic part of the way of being, being and presenting in the world.Autistic functioning goes beyond a set of symptoms, it is at the essence of a person and their personality.Therefore, it is not a pathology nor a disorder or a medical condition, simply.This does not mean that the paradigm denies difficulties inherent to autism and the importance of interventions that ensure quality of life.In line with the neurodiversity paradigm , this work will not use the terms "disorder, disease or ASD".As autism is seen as part of someone's identity and not something portable, the expression "person with autism" will not be used either.
An autistic person, in Brazil and for legal purposes, is considered a person with a disability or PwD .PwD is "those who have long-term impairments of a physical, mental, intellectual or sensory nature, which, in interaction with one or more barriers, can obstruct their full and effective participation in society on equal terms with other people" ( Roussef et al., 2015).From the perspective of the post-social model of disability, still under construction, according to Bisol & Pegorini (2015), this is understood as the barriers that society places in front of minds and bodies judged to be significantly different from the standards of normality and health.However, it is recognized that a large number of people with disabilities, even without social barriers, will continue to experience suffering and losses.These people need constant support for basic daily activities and are in a co-dependent relationship with their caregivers.Mainly, mothers, who are generally abandoned by their partners and society.

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Although changes in contemporary family structures seek to share interaction, availability and responsibility for raising children between men and women ( Backes et al. 2018), Misquiatitti et al. (2000) point out in a study carried out to understand family overload in caregivers of children with autism spectrum disorder, comparing the results with the control group of family members of children with language disorders, that 85% of caregivers are female and 80% % are mothers.The silence and solitude of their pain is destined for them.They are left with the family burden.Especially if this woman and mother is also autistic.Autistic women suffer from the pressures of gender roles and are forced to disguise their difficulties and use their skills to compensate for difficulties even without having the cognitive and emotional resources to do so, which creates great overload (Hull, Petrides & Mandy , 2020 ).Family overload consists of a biopsychosocial disturbance due to prolonged and intensive care for someone who depends on that family member because they have physical or mental deficits.
This overload is closely linked to the lack of a support network to deal with the particularities of children with disabilities and have time to invest in their own desires and projects, in addition to mothering ( Misquiatitti et al., 2000).A woman is reduced to being a mother.Being an autistic mother means being a mother doubly reduced to gender and disability prejudices.
Sexism and ableism -prejudice against people with disabilities -oppress the creative existence of these women.However, there are practices that help to reduce and avoid this maternal overload, such as: making parental agreements, dividing tasks with the child and household chores, balance in the routine, involvement of the father beyond playing and helping when the mother is absent and each parent recognizes the importance of the roles that the other plays in their child's life (Portes & Vieira, 2020).However, practices recorded in scientific literature, aimed at the singularities of autistic women and mothers, were not found.What can be done to make this autistic woman, who is also the mother of an autistic person, less overwhelmed?Moved to answer this question, we wrote this article.

METHODOLOGY
Scientific articles on the topic of experiences or family overload in autistic mothers with autistic children were not found when searching with the following search expressions, on the CAPES, SciELO , VHL, Pepsic and Pubmed portals : autistic mother +experiências ; mother with autism spectrum disorder +overwhelm ; ("Mother with autism" OR Mother with "Autism Spectrum Disorder" OR "Autistic mother") AND (overload OR "family overload"); ("Mother with autism" OR "Mothers with autism" OR "Mothers diagnosed with autism spectrum To analyze the speeches of autistic mothers, thematic analysis was used, which, according to Creswell (1999 ), differs from content analysis by understanding the historical, cultural, religious, economic and political contextualization of speech and writing.Likewise, the neurodiversity paradigm was used , which understands autism as part of human diversity.
As part of human diversity, it can generate potential if welcomed by society or it can generate lack if socially rejected (Walker, 2021).Another methodology adopted was cognitive behavioral therapy (CBT), which aims to understand how cognitions affect our emotions/feelings and behaviors, and vice versa.Previously, it was believed in CBT that cognitions generated feelings or emotions and these generated behaviors.Currently, it is understood that this linearity does not necessarily exist.We can act and then think.We can feel and then think or feel and then act.These processes are associated with each other in a fluid and non-hierarchical way.
Cognitions are the knowledge that someone has about themselves, others and the world.
In this sense, as Gomes, Coelho & Miccione (2016) point out, cognitions are expressed through ideas, schemes; beliefs, judgments, values, opinions, expectations and assumptions.Feelings or emotions are how something affects a person, how something changes their mood and affections.Examples: anger, sadness and excitement .Many people confuse cognitions with feelings (Beck, 2022), for example, a person may say that they thought they were sad.Being sad is a feeling.The thought, in this case, may have been: I didn't like that Marcos called me stupid.Behaviors are actions that are visible or not to others.These can be mental actions: like singing, mentally.Count to three or pray/pray/do a prayer and mental ritual.
To carry out the analyses, the websites "Instituto da Inclusion Brasil", "Autismo em Dia", "Mundo Autista" and, internationally, the Autism websites were chosen.Speaks ( 2023), AWH(2014), SEN(2020) and Psychology Today (2024).Also, the books were analyzed: Aspie Girl , On the Rollercoaster -Living Motherhood in Autism and My Life Backwards.Finally, the Instagram profiles were analyzed: cris.w.caitano , paraquetabu and alessasartori .One article was included in the analysis: Autistic women's views and experiences of infant feeding

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: A systematic review of qualitative evidence , after being mentioned on the Instituto Inclusion Brasil website and found for full reading.In this documentary research, written documents were prioritized.

ANALYSIS AND DISCUSSION
Autistic women with motherhood experience are often stigmatized and made invisible , resulting in a lack of multidisciplinary assistance.Many are diagnosed only after their children are diagnosed and most of these mothers' care, reported in the scientific literature, is in relation to their children's nutrition.Another aspect reported is the low understanding of these mothers' sensory and communication difficulties, as well as the low adaptation of maternity services to the autistic mother of an autistic child.Many reported being bullied, reprimanded and ignored by health services.The lack of predictability and the difficulty of understanding their baby's needs led to exhaustion and guilt.Experiences of pain or engorgement during breastfeeding are thought to be similar to those of non-autistic mothers.However, there are differences in relation to autistic women who were hypersensitive to touch and suffered sexual violence.As a form of assistance, a nipple protector was registered, reducing sensory stimuli and distraction.Furthermore, set goals and know that the discomfort would decrease after six weeks and, in some cases, formula feeding.Some recommendations, in general, may be useful to professionals who work with autistic mothers who have autistic children and, therefore, avoid family overload for these women.They are: objective and written communication, touching only with authorization, receiving training and tools to deal with autism adapting to the individuality and reality of each mother, providing autistic mothers with a support provider and recording guidance on communication and sensory needs in maternity notes and child health records (Grant et al., 2022).intersectionalities between gender, motherhood and disability are captured .A speech imbued with pain, with trauma, with someone who sees their existence as non-existence, their "no" as yes and their "yes" as "no".With the readings of Walker (2021), one can glimpse how the imposition of the ideal mind and body, that is, neuronormativity imposes itself on the experiences of these mothers.They are not given the right to be themselves.In the midst of so many denials, late diagnosis and demands, it is difficult to even know who you are.This generates maladaptive core beliefs of lack of love, worthlessness and helplessness.These beliefs are so deep that they are difficult to change.They generally begin to develop in childhood, but they can appear at any time in life.These cognitions rooted in the most intimate 7 part of someone's being, manifest themselves in automatic thoughts, which are the first thoughts that come to our mind when we are exposed to a situation and, therefore, guide a pattern of actions on a daily basis (Beck, 2022) .
In this context, embracing autistic neurodivergence , understanding it as a fundamental part of these mothers' perception of the world, their affections and actions, helps to reduce family overload.Therefore, a perception of autism, according to the neurodiversity paradigm, contributes to an approach that does not underestimate or overestimate the neurocognitive capabilities of these women and, therefore, favors cognitions, feelings and actions of well-being in the support network, in these autistic mothers and in their autistic children.The foundations of cognitive-behavioral therapy can be a way to achieve self-knowledge for each person involved and seek practical problem resolutions, evaluating the consequences in the short, medium and long term.
On the website "Autismo em Dia", with an article entitled "Diagnosis of Autism in mother and child: learn about this story", published on March 3, 2022, it is highlighted that most mothers receive the diagnosis after their children are diagnosed .From the interview with Raissa, an autistic mother, of an autistic child, it is clear, as in the aforementioned article, that autistic mothers present more subtle sensory and socialization difficulties.Mainly if they are level 1 support.As an addition, Raissa shares a co-existing condition with autism, depression.
The scientific literature on autism in women, although scarce, according to Del'Osso & Carpita (2022), indicates evidence of how underdiagnosis leads to the development of these coexisting conditions.These conditions, based on the neurodiversity paradigm , could be avoided if autistic cognition were accepted and respected as it is (Singer, 1998), which would facilitate a satisfactory relationship between an autistic mother and an autistic child.In this way, autistic thoughts, instead of generating maladaptive core beliefs , by being welcomed and having investment in their human wealth potential, would generate adaptive core beliefs that allow self-compassion, cultivation of positive feelings in the atypical mother and resolution of problems that demonstrated more benefits for everyone involved, because solving problems everyone solves in some way.However, at what cost is this resolution?Is it a beneficial resolution for everyone involved?Are this autistic mother provided with the necessary resources to solve the problems of atypical motherhood?By using autism as an ally in interventions, this resolution, within the possibilities of the autistic person, would be more effective.An autistic person does not think like a neurotypical -Walker (2021), a person with a way of thinking, feeling and acting in accordance with what is socially acceptable -.An autistic mother does not think like a neurotypical mother .And it's okay.This is the beauty of diversity, of identities.There are gains in both perceptions of the world.When the mechanisms of oppression of autistic existence are recognized and minimized, considering autism as a potential for social development, autism skills have room to transcend barriers.Skills such as detailed thinking and pattern recognition, creativity, long-term memory, following useful rules for good coexistence and resilience are evidenced in scientific studies (Armstrong, 2015, Grandin & Panek , 2015).Marcia, interviewed by the Mundo Autista portal (2023), uses organization skills, recognition of details and patterns to detect lies; solve problems effectively, understand children's behaviors and deal with sensory and socialization challenges with other parents.As well as with professionals and in extra classes.Environments that facilitate these skills, or others that autistic mothers have, help in coping with adversities and taking advantage of the possibilities of the mother-child relationship.In the meantime, Fernanda invites us to reflect on how these skills can become chaos and make the life of an autistic person even more difficult, as there is a downside to noticing what others don't notice.Furthermore, she recognizes the importance of the father in being able to take care of her daughter, being a solo autistic mother and level 2 of support (Fialho, 2024).This outburst and alert motivates us to reflect on avoiding generalizations of experiences and providing a reduction in the burden of autistic mothers with autistic children that makes sense for the family involved.
In the article on Autism in Day (2022), Raissa also claims that her and her son's diagnosis was a liberation, however, her difficulties were minimized by the family, which is in line with the Autistic study women's views and experiences of infant feeding : A systematic review of qualitative evidence (Grant et al., 2022).This process of liberation after the diagnosis did not happen in the same way for Michelle and her son, as observed in the books Menina Aspie and On the Rollercoaster-Living Motherhood in Autism.Therefore, it is important to consider subjectivities when planning interventions for autistic mothers with autistic children.
Autism websites Speaks (2023), AWH (2014), SEN (2020) and Psychology Today (2024) present the experiences of autistic mothers with autistic children, including the burden they face.In summary, in Autism Speaks (2023), Eileen Lamb shares the challenges of raising her son Charlie and the importance of community support and specialized therapies.It highlights the urgent need for more funding and support for families in similar situations.
In the AWH report (2014), Cynthia Kim talks about her experience as an autistic mother, and addresses her challenges, including her sensory issues and the need for structured routines, and she also highlights the importance of early diagnosis.Furthermore, it addresses the importance of empathy and understanding children's needs.In general, it can be said that in Autism Speaks (2023), AWH (2014), SEN (2020) and Psychology Today (2024), it is clear that autistic mothers face several additional challenges in their motherhood, such as sensory overload, communication difficulties and the need to maintain structured routines.When there is a lack of understanding and social support, the feeling of overload and isolation is even greater.
However, figuratively it can be said that there is a light at the end of the tunnel, as mothers report strategies to combat overload and have a fuller life.Among the strategies used, the establishment of structured routines, having therapies and specialized support, community support and self-care stand out.Acceptance and understanding of children's needs were identified as fundamental to improving the quality of life of the reported families.This acceptance and understanding activates, maintains or reinvents resources for acceptance or modification of a maternal problem that bothers mothers.These resources highlight cognitions, through the analysis of evidence of an unpleasant thought, and useful behaviors to achieve the desired objective.The neurodiversity paradigm linked to cognitive-behavioral therapy leads to the question of what to do for these oppressed, marginalized or ill-accommodated mothers because of the dominant culture, they have a better quality of life, following autism and not fighting against it.The potential of atypical mothering comes with autism and not despite it.
Like Raissa, Michelle, Selma and the mothers on Instagram profiles: crisw.caitano, paraquetabu and alessasartori , report perceiving autism as a facilitator in their children's communication and understanding.Although autism is a spectrum and each person manifests it in a unique way, being part of the spectrum already favors a special type of connection with someone.It's having an important part of you in common with someone you love and mothering , which is already difficult for any mother, due to its unpredictability, for autistic mothers it's 10 even more difficult.Therefore, being sure that something unites mother and child is comforting.Jr. Camargos et al (2013) reinforces that being an autistic mother or father and having an autistic child can be a factor in interventions, due to the identification of parents with their children and children with their parents.This facilitated interaction and this facilitated emotional bond between peers is in line with the concept of double empathy in the neurodiversity paradigm .
This concept points out that people tend to understand, like and sympathize with the suffering of those who have a similar experience to theirs.Autistic people would have more empathy with autistic people or other people in socially vulnerable situations.While non-autistic people tend to empathize with people who have a typical experience (Milton, Heasman & Sheppard , 2018).Embracing this autistic cognition that tends to embrace other autistic cognition helps to understand the compensatory cognitive-behavioral aspects, the rules, assumptions and attitudes developed throughout life.These cognitive-behavioral aspects understood, help support the autistic mother with an autistic child, thus avoiding exhaustion and family overload for these mothers.
Living with others can have its strengths, but it also has a painful and difficult part.A mother with difficulty interacting who has to interact.A mother with sensory deficits who needs to help her son with his.A mother in crisis who needs to welcome her child in crisis.A mother with cognitive rigidity who needs to carry out interventions to make her child more flexible.In addition to the self-demand of doing for the child what was not done for oneself, in search of self-realization and late compensation for one's neglected inner child.The feeling of guilt when thinking that the child is autistic, due to the mother's genetics, is another factor that causes psychological challenges and is confirmed in Michelle's book ( Malab , 2017).Having time for yourself, getting away from the chaos, persisting in your interests, undergoing psychotherapy and having other caring professionals take care of mothers, having autistic friends and making comforting movements were brought up on Instagram profiles, websites and books as favorable to reducing overload family in autistic mothers.Caitano (2022) reports that her autistic cognition makes her question the details of life, the reason for the pain and loneliness of an autistic mother, without financial resources, with an adult autistic son level 3 support.Amid the tears, the way he finds to comfort himself is with the feeling of faith and mental conversations with God.Selma, therefore, found reconciliation with herself and her daughter in Buddhism (Silva, 2017).In this sense, there is self-knowledge and self-acceptance of autistic cognition as it is, aiming to facilitate the maternal relationship, which leads to the paradigm of neurodiversity (Walker, 2021) and an exemplification of how each mother reacts to circumstances due to your way of perceiving the situation.From the attributed interpretation come feelings and behaviors.11 This influence of cognition, feelings and behaviors is explained, according to Beck (2022), by CBT.When delving into the cognitive-behavioral triad: cognitive, feeling and behavior, it is clear that if one aspect of the triad changes, the others change.If an autistic mother is thinking that she can no longer take care of her child, feels overwhelmed and decides to vent with a post on Instagram, this behavior of self-analysis and catharsis can change the thought of insufficiency and renew her commitment to caring.Another interesting aspect of Cris's report is that in the midst of his son's aggressive attacks, he discovered the self-regulatory movement of rocking himself as a strategy to stop the crisis.Both rock until the suffering passes.Michelle cites rocking with her son as a moment of connection and search for inner calm for both, in the midst of overwhelming crises ( Malab , 2017).An autism behavior used as an ally to return to emotional balance and replaces exhausting containment.An environment adapted for an autistic mother and child who, in this way, find in themselves what they need to live a new and transformed life.A life with cognitions, feelings and behaviors consistent with your autistic self.
As usual, the autistic mother is a mother and her main role is to provide reference and care for her child (Portes & Vieira, 2020).Once again, in the thematic analysis of the writings, the historical-cultural and social contextualization of these mothers can be seen, affecting their perception and the way of dealing with the pleasures and displeasures of atypical motherhood.In addition to contextualization, the interpretation that each mother attributes to her experience influences how this experience affects her, as discussed in cognitive-behavioral therapy.Adherence, or not, to the neurodiversity paradigm also affects a perspective of autism as a neurodivergence that brings abilities and difficulties, leading to feelings of acceptance of autism or a view of autism as a pathology and feelings of denial, anger, fear and stress about this.In general, these mothers make an appeal: not to frame people in theories, but to frame theories in people.Professional training needs to be accompanied by human training in active listening, specialized observation and non-judgment.

FINAL CONSIDERATIONS
The article aimed to understand how to reduce family overload in autistic mothers of autistic children.Due to the scarce scientific material, it was necessary to analyze primary sources that had not yet been scientifically analyzed.Therefore, the research was characterized as documentary.In conclusion, three thematic axes were identified as causing family overload in autistic mothers with autistic children: social and sensory communication difficulties, making their difficulties invisible and sharing deficits similar to those of their children.To reduce the burden, three other thematic axes were identified: better understanding the child because he is also autistic, understanding autism in women and its implications for mothering , and adapted communication from the multidisciplinary team dealing with the autistic mother.
Taking the aforementioned results into account can help guide public policies and health practices aimed at supporting these mothers more effectively.
Being able to share the freedom of being autistic with your child and encouraging him to do the same, in the analyzes carried out, proves to be a driver for reducing family overload in these mothers, however, how can one be free in a society that imprisons?How to be an autistic mother in a society for neurotypical mothers ?Many questions and the answers are not conclusive.Life is not conclusive.As far as is appropriate, this article aimed to begin to follow the path of these answers and give rise to new research in the area, mainly in Brazil.It is essential to analyze how Brazilian culture affects the family burden of autistic mothers with autistic children.Cognitive-behavioral therapy and the acceptance of the neurodiversity paradigm were considered promising in personalized care for autistic mothers with autistic children.It is hoped that this present work will inspire new research and practices that value neurodiversity , promoting more inclusive support for autistic mothers.
Based on the conclusions of this article, there is a need for further research on family overload in autistic mothers with autistic children.Therefore, future studies can explore several directions, some of which are mentioned below.
Investigate family burden over time, following autistic mothers and their children from diagnosis to different stages of their development, from childhood to adolescence.This type of study can identify changes in overload and factors that contribute to its reduction or worsening.
Explore how different cultural contexts affect family burden in autistic mothers.In Brazil, it is essential to consider cultural, socioeconomic and regional factors that can influence the experience of these mothers, including the effectiveness of the proposed interventions.
___________________________________________________________________________ Rev. Gest.Soc.Ambient.| Miami | v.18.n.8 | p.1-16 | e08516 | 2024.5 disorder" OR "Autistic mothers ") AND (experience OR experiences).Therefore, it was decided to conduct documentary research.Documentary research allows the search, analysis and presentation of data that have not yet been scientifically proven and makes it possible to search for different documents, at different times.Documents can be written and unwritten.They can be films, images, videos and other gestural, visual and non-verbal possibilities.This type of research is original, as it collects primary data ( Sá-Silva, Almeida & Guindani , 2009).
___________________________________________________________________________ Rev. Gest.Soc.Ambient.| Miami | v.18.n.8 | p.1-16 | e08516 | 2024.9 Alicia Trautwein narrates her life in SEN (2020), presenting herself as a late-diagnosed autistic person who has four children, three of whom are also autistic.She talks about her challenges, including sensory overload, and highlights the importance of acceptance and resilience in balancing family needs.The Psychology article Today (2024) describes the experience of Jessica, an autistic mother, highlighting the unique challenges and joys of this journey.The author mentions the lack of research on autistic mothers, when compared to the vast literature on neurotypical mothers of autistic children.To overcome her challenges, including difficulties balancing work and family responsibilities, Jessica reports prioritizing a deep connection with her children.She also mentions that motherhood has helped her feel more connected to other mothers, reducing her feeling of social isolation.

Fernanda
, interviewed by the Mundo Autista portal (2023), also indicates advantages and disadvantages of being an autistic mother and having an autistic child.What unites this mother and her son, autism, is what can separate the two.It should be noted that the stories analyzed are from mothers of different ages, different levels of support, different race/ethnicity and socioeconomic status.Your children too.Therefore, this research tried to cover as much diversity of autism as possible.
___________________________________________________________________________ Rev. Gest.Soc.Ambient.| Miami | v.18.n.8 | p.1-16 | e08516 | 2024.12 ___________________________________________________________________________ Rev. Gest.Soc.Ambient.| Miami | v.18.n.8 | p.1-16 | e08516 | 2024.13 Creating and validating specific assessment tools to measure family burden in autistic mothers can be an effective way to assess their needs and possible more effective interventions.These tools can include creating questionnaires, interviews, and observation methods that allow you to accurately understand experiences.Investigate the role of support networks such as support groups, social networks and online communities, evaluating how these interactions can help reduce family overload.The study can also encompass planning how these networks can be strengthened and expanded to provide more effective support.Create intervention methods based on the neurodiversity paradigm for autistic mothers with autistic children and analyze the neuropsychological effects on reducing stress and family overload.