Abstract

This study aimed to understand how the process of toilet training occurred in autistic children. This is a retrospective, descriptive study with qualitative analysis. Semi-structured interviews were carried out with seven caregivers of children diagnosed with Autism Spectrum Disorder (ASD), aged between 2 and 6 years old, who had already completed this training. The interviews were transcribed and subjected to content analysis. Data analysis allowed us to identify four categories: toilet training for evacuation, toilet training for urination, supporting strategies, and difficulties in the process. The results indicated greater difficulty for children with ASD to control their feces and, in general, daytime and nighttime toilet training occurred in two stages. Accessories and playful resources were used to facilitate the process, in addition to positive reinforcement, positive punishment and negative punishment strategies. There were emotional and physical difficulties for the caregivers themselves, and they did not receive professional help. This study advances knowledge about toilet training for children with ASD, indicating strategies that facilitate this process, both for caregivers and children, contributing to the training of professionals who work with this population.

Keywords:
Autism spectrum disorder; Toilet training; Child development

Introduction

Toilet control is one of the important stages of physical and psychological development in early childhood (Nurfajriyani; Prabandari; Lusmilasari, 2016NURFAJRIYANI, I.; PRABANDARI Y.; LUSMILASARI, L. Influence of video modelling to the toileting skill at toddler. International Journal of Community Medicine and Public Health, v. 3, n. 8, p. 2029-2034, 2016.), and the training needed to achieve it is a great challenge for families (Van Nunen et al., 2015; Vasconcelos; Lima, 2017VASCONCELOS, M. M. A.; LIMA, E. M. Disfunção do trato urinário inferior. In: SOCIEDADE BRASILEIRA DE PEDIATRIA. Tratado de Pediatria. 4. ed. Barueri: Editora Manole, 2017. v.1, p. 1119-1125.). This stage refers to the period in which the child stops using diapers, as they are now able to control their sphincters, acquiring greater autonomy (Nurfajriyani; Prabandari; Lusmilasari, 2016; Van Nunen et al., 2015). At the end of training, it is expected that the child will be able to stay dry and clean, in addition to independently using the bathroom (Soutinho; Corrêa; Blascovi-Assis, 2020SOUTINHO, R. S. R.; CORRÊA, A. G. D.; BLASCOVI-ASSIS, S. M. Controle esfincteriano em crianças com Transtorno do Espectro do Autismo. In: SEABRA, A. G. et al. (Orgs.). Estudos interdisciplinares em saúde e educação nos Distúrbios do Desenvolvimento. São Paulo: Memnon, 2020.).

Early, late or poorly managed toilet training can lead to physiological consequences, such as constipation, enuresis, encopresis, and urinary infections (Hellström; Sillén, 2001HELLSTRÖM, A. L.; SILLÉN, U. Early potty training advantageous in bladder dysfunction decreases the risk of urinary infection. Lakartidningen, v. 98, n. 28-29, p. 3216-3219, 2001.; Hodges et al., 2014HODGES, S. J. et al. The association of age of toilet training and dysfunctional voiding. Research and Reports in Urology, v. 6, p. 127-130, 2014.; Mota; Barros, 2008MOTA, D. M.; BARROS, A. J. D. Treinamento esfincteriano: métodos, expectativas dos pais e morbidades associadas. Jornal de Pediatria, v. 84, n. 1, p. 9-17, 2008.; Von Gontard, 2003). Failure to be trained in toilet control can also result in reduced personal hygiene, physical discomfort, reduced social participation, and having to face prejudice and stigma (Cicero; Pfadt, 2002CICERO, F. R.; PFADT, A. Investigation of a reinforcement-based toilet training procedure for children with autism. Research in Developmental Disabilities, v. 23, n. 5, p. 319-331, 2002.). Difficulty controlling nighttime urine is associated with an increased risk of depression and aggressive behavior in adolescence, which, in turn, have been shown to be risk factors for suicidal behavior (Liu; Sun, 2005LIU, X.; SUN, Z. Age of attaining nocturnal bladder control and adolescent suicidal behavior. Journal of Affective Disorders, v. 87, n. 2-3, p. 281-289, 2005.). Physiological, psychological and sociocultural factors influence learning toilet control (Solarin et al., 2017SOLARIN A. U. et al. Toilet training practices in Nigerian children. South African Journal of Child Health, v. 11, n. 3, p. 122-128, 2017.). For children to acquire independence in using the bathroom, they must develop language, as well as motor, sensory, neurological, and social skills (Schum et al., 2002SCHUM, T. R. et al. Sequential acquisition of toilet-training skills: a descriptive study of gender and age differences in normal children. Pediatrics, v. 109, n. 3, 2002.). Generally, the child is expected to be able to sit, stand, walk, speak, understand and follow instructions, and take off their clothes to perform this activity successfully (Mota; Barros, 2008). Children who have not yet developed these skills, for some reason, need the implementation of strategies that facilitate the process and that will enable toilet training despite motor or language deficits.

Autism spectrum disorder (ASD) is characterized as a neurodevelopmental disorder that has an early onset, causing impairment in social and communication skills, in addition to presenting restricted and/or repetitive behaviors, interests and activities (APA, 2022). ASD is seen as a spectrum that can vary in severity and many individuals with this disorder require some type of support to develop skills and carry out their daily activities (Lord et al., 2018LORD, C. et al. Autism spectrum disorder. The Lancet, v. 392, n. 10146, p. 508-520, 2018.).

For children with ASD, the training process for sphincter control may present particularities and some additional difficulties may be faced in: identifying the desire/need to eliminate urine or feces; communication and language; understanding commands; skills in undressing and dressing; and using toilet paper correctly. Sensory changes and strictness in relation to routines are also factors that can lead to long-term incontinence, avoidance of using the bathroom, and difficulty in eliminating in the toilet if they have already learned to evacuate or urinate in other devices or outdoors (Bird et al., 2022BIRD, F. et al. Health monitoring of students with autism spectrum disorder: Implementation integrity and social validation of a computer-assisted bowel movement tracking system. Behavioral Interventions, v. 37, p. 766-776, 2022.; Cagliani et al., 2021CAGLIANI, R. R.; SNYDER, S. K.; WHITE, E. N. Classroom-based intensive toilet training for children with autism spectrum disorder. Journal of Autism and Developmental Disorders, v. 51, p. 4436-4446, 2021.; Francis; Mannion; Leader, 2017FRANCIS, K.; MANNION, A.; LEADER, G. The assessment and treatment of toileting difficulties in individuals with Autism Spectrum Disorder and other developmental disabilities. Review Journal of Autism and Developmental Disorders, v. 4, p. 190-204, 2017.; Soutinho; Corrêa; Blascovi-Assis, 2020SOUTINHO, R. S. R.; CORRÊA, A. G. D.; BLASCOVI-ASSIS, S. M. Controle esfincteriano em crianças com Transtorno do Espectro do Autismo. In: SEABRA, A. G. et al. (Orgs.). Estudos interdisciplinares em saúde e educação nos Distúrbios do Desenvolvimento. São Paulo: Memnon, 2020.).

After reviewing the literature, Francis, Mannion and Leader (2017FRANCIS, K.; MANNION, A.; LEADER, G. The assessment and treatment of toileting difficulties in individuals with Autism Spectrum Disorder and other developmental disabilities. Review Journal of Autism and Developmental Disorders, v. 4, p. 190-204, 2017.) report that there are articles that highlight the difficulties of the population with ASD in acquiring sphincter control and using the bathroom and indicate the need for training programs (citing the use of educational videos that the child can imitate, scheduled periodic trips to the bathroom, and removal of diapers so that the child feels uncomfortable due to wet clothes), however, they do not provide enough information on how to implement these exercises. No Brazilian studies were found that present toilet training programs for children with ASD. What exists in the national literature are just recommendations, these include: develop a routine with attention to schedules; enable a communication system for needs; plan dressing so as to facilitate attempts; make use of visual resources; identify areas that may present a problem (for example, the sound of flushing); praise and positively reinforce success during the process; and practice attempts in different environments to normalize the act (Soutinho; Corrêa; Blascovi-Assis, 2020SOUTINHO, R. S. R.; CORRÊA, A. G. D.; BLASCOVI-ASSIS, S. M. Controle esfincteriano em crianças com Transtorno do Espectro do Autismo. In: SEABRA, A. G. et al. (Orgs.). Estudos interdisciplinares em saúde e educação nos Distúrbios do Desenvolvimento. São Paulo: Memnon, 2020.).

Considering the negative physiological, emotional or behavioral impacts, in the short and long term, of unsuccessful toilet training (Cicero; Pfadt, 2002CICERO, F. R.; PFADT, A. Investigation of a reinforcement-based toilet training procedure for children with autism. Research in Developmental Disabilities, v. 23, n. 5, p. 319-331, 2002.; Choby; George, 2008CHOBY, B. A.; GEORGE, S. Toilet training. American Family Physician, v. 78, n. 9, 1059-1064, 2008.; Hellström; Sillén, 2001HELLSTRÖM, A. L.; SILLÉN, U. Early potty training advantageous in bladder dysfunction decreases the risk of urinary infection. Lakartidningen, v. 98, n. 28-29, p. 3216-3219, 2001.; Hodges et al., 2014HODGES, S. J. et al. The association of age of toilet training and dysfunctional voiding. Research and Reports in Urology, v. 6, p. 127-130, 2014.; Liu; Sun, 2005LIU, X.; SUN, Z. Age of attaining nocturnal bladder control and adolescent suicidal behavior. Journal of Affective Disorders, v. 87, n. 2-3, p. 281-289, 2005.; Mota; Barros, 2008MOTA, D. M.; BARROS, A. J. D. Treinamento esfincteriano: métodos, expectativas dos pais e morbidades associadas. Jornal de Pediatria, v. 84, n. 1, p. 9-17, 2008.; Von Gontard, 2003), it is necessary to deepen knowledge about truly effective techniques and strategies for toilet training for children with ASD.

It is believed that by investigating how this process occurred for autistic children who have already managed to be toilet trained, identifying the main doubts that permeated the process, which supporting strategies worked or not, knowledge can be gathered that will be extremely useful for professionals who deal with this clientele. Therefore, this study aims to understand how the toilet training process for children with ASD took place.

Method

This is a retrospective, descriptive study with qualitative analysis, submitted to the Research Ethics Committee, which was approved under the ruling number 5,301,424.

Through postings on social networks, caregivers were invited to participate in the study. The inclusion criteria were: caregivers of children diagnosed with ASD, aged between 2 and 6 years old, who had already completed the toilet training process. We limited the children's age to a maximum of six years, as normally at this age this training has already taken place, and not so long ago that it negatively interferes with remembering the facts.

It is considered important to highlight that, although it was not an inclusion criterion, only female caregivers were interested in participating in the research. Therefore, semi-structured interviews were carried out with these caregivers, in a virtual environment, from June to July 2022, and were recorded. These interviews were transcribed and subjected to content analysis (Mayan, 2001MAYAN, M. J. Una introducción a los métodos cualitativos: módulo de entrenamiento para estudiantes y profesionales. Edmonton: Qual Institute Press, 2001.). Initially, an exhaustive reading of the material was carried out, followed by the categorization of the data, and the analysis categories were created and discussed by two researchers. Next, the categories were integrated into broader themes, in order to represent the strategies and resources used in the toilet training process of autistic children.

When presenting the statements selected to illustrate the themes, the letter P (representing the research participants) was used at the end of each statement, numbered from 1 to 7.

Results

Seven caregivers of children with ASD participated in the research, as shown in Table 1.

Several reasons led caregivers to start toilet training, these included: cultural issues, pressure from society, observation of typical child's toilet training, and signs of readiness. It is also worth highlighting that the children verbalized little or nothing when they started the process, but they had motor aspects compatible with the development expected for their age. There was no collaboration of therapies, except in one of the cases, in which there was help from a “behavioral therapist” (the mother does not know how to refer to her profession).

The data analysis process allowed for the identification of four broad categories: toilet training for urination; toilet training for evacuation; supporting strategies; and difficulties in the process.

Toilet training for urination

Sphincter control for urination was achieved first in all participating children, before control for evacuation:

The caregivers observed the signs that the children showed before urinating:

Some reported taking the child to the bathroom regularly, not expecting any signs:

It was observed that, in most cases, daytime and nighttime toilet training was done in two stages:

However, in one of the interviews the caregiver highlighted that sphincter control occurred first at night:

Some avoided giving liquids at night, trying to minimize accidents:

Regarding training to urinate outside the home, caregivers tried to anticipate going to the bathroom to prevent the child from feeling the urge while they were away:

It is worth noting that toilet training outside the home occurred with some insecurities on the part of the caregivers:

Toilet training for bowel evacuation

The caregivers pointed out that the sphincter control training for bowel evacuation occurred after urination control and that it was the most challenging:

There were reports that some children already had habitual difficulty in evacuating:

However, no caregiver could explain the reason for the difficulty. The difficulty for the child to accept the use of the toilet to evacuate was also highlighted:

A caregiver talked about how she taught her son that feces should be disposed of in the toilet:

The child was reported to be uncomfortable with feces on their clothes or diapers:

In fact, this was a concern of a caregiver regarding nighttime toilet training:

Some signs that children showed when they were going to evacuate were highlighted and that helped caregivers understand when to take children to the bathroom:

In addition to behavioral signs, some caregivers observed the child's routine, trying to take them to the bathroom at times when they had the habit of having a bowel movement:

Some precautions were reported regarding training for evacuation outside the home:

Supporting strategies

In regard to supporting strategies, the use of accessories and playful resources, was identified as well as behavioral strategies, such as positive reinforcement, positive punishment and negative punishment.

Use of accessories and playful resources

The caregivers purchased accessories to aid the toilet training process, such as a potty, a seat reducer and a footrest to support the feet:

However, some children did not accept certain resources:

Various playful resources and pretend play were also used to distract the child while using the bathroom, and also to teach about using the toilet:

The cell phone stood out for being a resource widely used during toilet training:

Positive reinforcement

Positive reinforcement was a strategy used to facilitate the child's understanding of what they were expected to do and to encourage them to repeat the action:

This positive reinforcement was also used through rewards:

Punishments

In relation to behavioral strategies, the use of negative and positive punishments was reported, aiming to eliminate certain unwanted behaviors, such as evacuating outside the toilet, for example:

In this example, the child lost the opportunity to play in the water and the mother used negative punishment by removing the play resources and positive punishment by making threats. Other reports using threat were obtained:

Difficulties in the process

Several difficulties were reported by both children and caregivers. Regarding the children, some had difficulty understanding:

Regressions were reported due to changes in routine or seasons of the year:

Another difficulty mentioned was that everyone involved in caring for children must maintain the toilet training routine:

The caregivers also reported their own difficulties in the training process, some of an emotional nature, such as insecurity, frustrations, and feelings of loneliness, and others of a physical nature, due to intense tiredness/exhaustion:

Discussion

The majority of children whose caregivers participated in the research were male, a total of 6 out of 7, which is consistent with studies that state that there is a higher prevalence of ASD in boys (Baio et al., 2018BAIO, J. et al. Prevalence of autism spectrum disorder among children aged 8 years. Autism and Developmental Disabilities Monitoring Network, 11 sites, United States, 2014. Morbidity and Mortality Weekly Report. Surveillance Summaries, v. 67, n. 6, p. 1-23, 2018.; Li et al., 2022LI, Q. et al. Prevalence of autism spectrum disorder among children and adolescents in the United States from 2019 to 2020. JAMA Pediatrics, v. 176, n. 9, p. 943-945, 2022.).

The expectation of early removal of diapers has been replaced by greater age tolerance for toilet training (Clifford et al., 2000CLIFFORD, T. et al. Toilet learning: antecipatory guidance with a child-oriented approach. Paediatrics & Chid Health, v. 5, n. 6, p. 333-335, 2000.; Mota; Barros, 2008MOTA, D. M.; BARROS, A. J. D. Treinamento esfincteriano: métodos, expectativas dos pais e morbidades associadas. Jornal de Pediatria, v. 84, n. 1, p. 9-17, 2008.). Recent studies indicate that most typical children do not fully toilet train before 36 months (Mrad et al., 2019MRAD, F. C. C. et al. Treinamento esfincteriano. Manual de Orientação - documento conjunto Sociedade Brasileira de Pediatria e Sociedade Brasileira de Urologia. 2019. 11 p.), which is influenced by caregivers' beliefs about what is the correct age, the method used to carry out toilet training, as well as the use of disposable diapers and lack of parental time (Choby; George, 2008CHOBY, B. A.; GEORGE, S. Toilet training. American Family Physician, v. 78, n. 9, 1059-1064, 2008.; Schum et al., 2001; Van Nunen et al., 2015).

In the present study, there were reports of waiting for the child's signs of readiness to start sphincter control training, which is consistent with the Child-Oriented Approach, proposed by the American Academy of Pediatrics, which recommends that children are not forced to start the toilet training process until they show certain signs (Choby; George, 2008CHOBY, B. A.; GEORGE, S. Toilet training. American Family Physician, v. 78, n. 9, 1059-1064, 2008.; Mrad et al., 2019MRAD, F. C. C. et al. Treinamento esfincteriano. Manual de Orientação - documento conjunto Sociedade Brasileira de Pediatria e Sociedade Brasileira de Urologia. 2019. 11 p.). The main signs are: imitating the behavior of caregivers; walking and being able to sit stably and without assistance; understanding and following simple commands; picking up small objects; pulling clothes up and down; using words, facial expressions or movements that indicate the need to urinate or have a bowel movement; signaling to parents that you have just had a bowel movement or urinated in a diaper; being bothered by a wet diaper; and staying on the potty or toilet for 3 to 5 minutes (Kaerts et al., 2012KAERTS, N. et al. Readiness signs used to define the proper moment to start toilet training: a review of the literature. Neurourology Urodynamics, v. 31, n. 4, p. 437-440, 2012.; Mrad et al., 2019).

It was noted that, in some cases, parents did not observe signs of readiness, but chose to start toilet training due to the typically expected age or due to pressure from other family members. In these cases, the training required more time and patience, which confirms the recommendations of the Brazilian Society of Pediatrics and the Brazilian Society of Urology (Mrad et al., 2019MRAD, F. C. C. et al. Treinamento esfincteriano. Manual de Orientação - documento conjunto Sociedade Brasileira de Pediatria e Sociedade Brasileira de Urologia. 2019. 11 p.), as the child was not yet physiologically ready or did not understand the situation. It is worth considering that the lack of verbalization on the part of the children was a factor that made the process difficult, but it was not an impediment to the success of toilet training. The difficulty for parents to understand the child who does not yet speak leads to further doubts in carrying out toilet training, as was also pointed out in the study by Patriota (2020).

The caregivers reported that the success of training to control urination occurred before the control to evacuate, as reported in the study by Miranda and Machado (2011MIRANDA, J. E. G. B.; MACHADO, N. C. Treinamento esfincteriano anal: estudo transversal em crianças de 3 a 6 anos de idade. Revista Paulista de Pediatria, v. 29, n. 3, 2011.). However, these data differ from the results of the study by Schum et al. (2002SCHUM, T. R. et al. Sequential acquisition of toilet-training skills: a descriptive study of gender and age differences in normal children. Pediatrics, v. 109, n. 3, 2002.), which indicated that children first acquired control over their feces. Von Wendt et al. (1990) specifically studied children with intellectual disabilities and found that, in most cases, stool control occurred first, however, 30.5% of children at seven years of age remained with encopresis with 19% of adults at 20 years of age with the same condition. The authors suggest that effective toilet training techniques could improve these numbers.

Some children had habitual difficulties in evacuating. Many children with ASD present gastrointestinal changes, manifesting elimination problems, such as fecal incontinence, constipation, and diarrhea (Vilela et al., 2019VILELA, D. A. M.; NASCIMENTO, H. B.; PALMA, S. M. M. Disfunção gastrointestinal no transtorno do espectro autista e suas possíveis condutas terapêuticas. Revista Debates in Psychiatry, v. 9, n. 4, p. 34-42, 2019.; Bird et al., 2022BIRD, F. et al. Health monitoring of students with autism spectrum disorder: Implementation integrity and social validation of a computer-assisted bowel movement tracking system. Behavioral Interventions, v. 37, p. 766-776, 2022.). These problems may be the result of impaired parasympathetic activity, increased endocrinological response to stress, dysbiosis, food allergies, fiber-restricted diets, and medication side effects (Bird et al., 2022), reinforcing the importance of medical monitoring in these cases.

Reports of difficulties in accepting the use of the toilet to evacuate were observed. As this was not reported by the caregiver of the only girl participating in this study, we infer that learning may take longer for boys due to the need to learn to use the bathroom in two different ways: to urinate and to evacuate, that is, in the position of standing and sitting (Schum et al., 2002SCHUM, T. R. et al. Sequential acquisition of toilet-training skills: a descriptive study of gender and age differences in normal children. Pediatrics, v. 109, n. 3, 2002.). Some children are afraid of the noise of the flush or even of falling into the toilet (Mrad et al., 2019MRAD, F. C. C. et al. Treinamento esfincteriano. Manual de Orientação - documento conjunto Sociedade Brasileira de Pediatria e Sociedade Brasileira de Urologia. 2019. 11 p.), and the difficulty in accepting variations in the routine can also generate opposition and annoyance on the part of the child with ASD.

Some children were bothered by the presence of feces on their clothes or in their diapers, which meant that parents were scared of feces leaking onto the bed and the child refusing to lie down in the bed again. On the other hand, cases were cited in which the child picked up feces, played with it as if it were modeling clay or tried to put it in their mouth, demonstrating the absence of feelings of disgust (usually associated with feces in our culture) or discomfort with the odor. In addition to the importance of cognitive development and adaptive behavior for the child to learn what to do after having a bowel movement, it is also necessary to consider sensory factors associated with how to deal with feces (Soutinho; Corrêa; Blascovi-Assis, 2020SOUTINHO, R. S. R.; CORRÊA, A. G. D.; BLASCOVI-ASSIS, S. M. Controle esfincteriano em crianças com Transtorno do Espectro do Autismo. In: SEABRA, A. G. et al. (Orgs.). Estudos interdisciplinares em saúde e educação nos Distúrbios do Desenvolvimento. São Paulo: Memnon, 2020.). It is known that most children with ASD have changes in sensory processing (Almohalha, 2020ALMOHALHA, L. Intervenção de Terapia Ocupacional junto a crianças com transtorno do processamento sensorial. In: PFEIFER, L. I.; SANT’ANNA, M. M. M. (org.). Terapia Ocupacional na infância: procedimentos na prática clínica. São Paulo: Memnom, 2020. p. 220-231.; Tomchek; Dunn, 2007TOMCHEK, S. D.; DUNN, W. Sensory processing in children with and without autism: a comparative study using the short sensory profile. American Journal of Occupational Therapy, v. 61, n. 2, p. 190-200, 2007.), with the most reported disorders involving changes in sensory modulation, which consist of abnormally intense responses to sensory stimuli, leading to functional impairment. These can be divided into three categories: hyper-response, hypo-response and sensory seeking. Hyper-responsiveness involves an intense negative reaction to sensory stimuli, leading to avoidance or hypervigilance, while hypo-responsive individuals fail to notice or respond slowly to stimuli. Children who exhibit sensory seeking behaviors seek sensory experiences that are sometimes unusual for the rest of the population (Hazen et al., 2014HAZEN, E. P. et al. Sensory symptoms in autism spectrum disorders. Harvard Review of Psychiatry, v. 22, n. 2, p. 112-124, 2014.).

Some gestures/actions presented by the child, before evacuating or urinating, helped the caregivers understand when to take the child to the bathroom, these include: straining, facial expressions, specific positions with the legs, and isolating themselves in a corner of the house. These actions are in line with what was indicated by Schmitt (2004SCHMITT, B. D. Toilet training your child: the basics. Contemporary Pediatrics, v. 21, n. 3, p. 120-122, 2004.) and Figueiredo (2017FIGUEIREDO, R. I. C. Scoping review: vídeos de profissionais de saúde publicados online sobre a aquisição do controlo dos esfíncteres dirigidos a pais de crianças. 2017. Dissertação (Mestrado Integrado em Psicologia) - Faculdade de Psicologia, Universidade de Lisboa, Lisboa, 2017.), in which there are some bodily signs that are usually observed when the child feels the urge to urinate or defecate, such as: making faces, moving the legs to close the genitals, pulling at diapers, holding the genital area, squatting, increasing movement by walking from side to side, jumping or dancing, or remaining silent and suddenly stopping movement.

Observing the child's routine also helped caregivers anticipate any accident and take the child to the bathroom at their usual bowel movement or regular urination times, starting with shorter intervals and then increasing the time interval. In the studies by Yang, Zhao and Chang (2011YANG, S. S.-D.; ZHAO, L.-L.; CHANG, S.-J. Early initiation of toilet training for urine was associated with early urinary continence and does not appear to be associated with bladder dysfunction. Neurourology and Urodynamics, v. 30, n. 7, p. 1253-1257, 2011.) and Rinald and Miranda (2012RINALD, K.; MIRENDA, P. Effectiveness of a modified rapid toilet training workshop for parents of children with developmental disabilities. Research in Developmental Disabilities, v. 33, n. 3, p. 933-943, 2012.), parents also took the child to the bathroom at fixed times and at regular intervals. The instructional videos reviewed by Figueiredo (2017FIGUEIREDO, R. I. C. Scoping review: vídeos de profissionais de saúde publicados online sobre a aquisição do controlo dos esfíncteres dirigidos a pais de crianças. 2017. Dissertação (Mestrado Integrado em Psicologia) - Faculdade de Psicologia, Universidade de Lisboa, Lisboa, 2017.) taught parents during the toilet training period to establish frequent trips to the bathroom and invite the child to sit on the toilet or potty at predicted times for eliminating urine or feces, according to the child's habits.

In the present study, the caregivers also anticipated leaving the house, taking the child to the bathroom first, avoiding having to use public bathrooms, which can be more difficult for children with ASD, as it is a different place than their usual one and, because in the face of so many stimuli when outside the home, it may be more difficult for the child to perceive the urge to urinate or defecate and still be able to signal it to the caregivers.

Daytime sphincter control was what occurred first in most of the children, with the exception of one (who managed to be toilet trained at night first, as her caregiver took her to the bathroom before bed, in the middle of the night and upon awakening). The same also occurred in the study by Mota et al. (2010MOTA, D. M. et al. Longitudinal study of sphincter control in a cohort of Brazilian children. Jornal de Pediatria, v. 86, n. 5, p. 429-434, 2010.), who found an average of 25.2 months of age for a child to be toilet-trained during the day, and an average of 27.4 months for a child to no longer need diapers at night. To help with nighttime toilet training, many people avoided offering liquids to the child close to bedtime, and this strategy is cited in the literature as effective (Meneses, 2001MENESES, R. P. Enurese noturna monossintomática. Jornal de Pediatria, v. 77, n. 3, p. 161-168, 2001.; Soares et al., 2005SOARES, A. H. R. et al. A enurese em crianças e seus significados para suas famílias: abordagem qualitativa sobre uma intervenção profissional em saúde. Revista Brasileira de Saúde Materno Infantil, v. 5, n. 2, p. 301-311, 2005.).

Among the supporting strategies for toilet training, mentioned by caregivers, the use of accessories and playful resources stands out. The auxiliary devices used were: potty, seat reducer, footrest and urinal. However, some children did not accept these resources. When parents choose to use the toilet, it is important to consider the use of a seat reducer, as well as the use of a footrest for the child, so that the child feels greater security when climbing onto the toilet and while using the toilet, in addition to favoring the evacuation position (Clifford et al., 2000CLIFFORD, T. et al. Toilet learning: antecipatory guidance with a child-oriented approach. Paediatrics & Chid Health, v. 5, n. 6, p. 333-335, 2000.; Mrad et al., 2019MRAD, F. C. C. et al. Treinamento esfincteriano. Manual de Orientação - documento conjunto Sociedade Brasileira de Pediatria e Sociedade Brasileira de Urologia. 2019. 11 p.). It is believed that the use of a seat reducer can facilitate the toilet training of autistic children, due to the ease of keeping a routine present in the ASD child, as the child is already used to using the toilet, making it easier to expand this use to other outside-home contexts and not requiring two stages of modifications, such as when the child first gets used to the potty and then needs to use the toilet.

Playful resources, such as pretend play, books, children's drawings, games, and cell phones helped to distract the child, so that they would remain sitting on the toilet and also to teach them how to urinate or evacuate in this place. Rinald and Miranda (2012RINALD, K.; MIRENDA, P. Effectiveness of a modified rapid toilet training workshop for parents of children with developmental disabilities. Research in Developmental Disabilities, v. 33, n. 3, p. 933-943, 2012.) used toys and fun activities to help children remain seated in their toilet training for autistic and/or intellectually disabled children, these activities included reading books, watching television or playing on a laptop.

Behavioral strategies used by caregivers during toilet training were identified, which consisted of positive reinforcement, positive punishment, and negative punishment. Positive reinforcement is the addition of something that results in strengthening behavior, that is, the presentation of a certain stimulus that encourages the child to continue performing an indicated behavior (Lear, 2004LEAR, K. Ajude-nos a aprender. 2. ed. Toronto, 2004.). This also appeared as a supporting strategy to facilitate the child's understanding of what she/he was expected to do, encouraging repetition of the action. Positive reinforcement was reported by caregivers through the use of praise and celebrations and also offering rewards, such as sweets and the use of a cell phone. The same positive reinforcement resources were cited by Kiddo (2012). This reward system was used in a program developed for schools, as a way to help train children with autism and developmental delays to use the bathroom, in which a reward was given to the child when they urinated in the bathroom (Cocchiola Junior et al., 2012).

Punishment, on the other hand, is defined as something that tends to weaken a certain behavior (Lear, 2004LEAR, K. Ajude-nos a aprender. 2. ed. Toronto, 2004.), and can be presented through a stimulus added to the context (positive punishment), as in the case of threats made by the mother, or through withdrawal of something pleasurable for the child (negative punishment), as in the act of the mother removing the bowl in which the child was having fun.

Figueiredo (2017FIGUEIREDO, R. I. C. Scoping review: vídeos de profissionais de saúde publicados online sobre a aquisição do controlo dos esfíncteres dirigidos a pais de crianças. 2017. Dissertação (Mestrado Integrado em Psicologia) - Faculdade de Psicologia, Universidade de Lisboa, Lisboa, 2017.) reviewed instructional videos about sphincter training and found that parents are often instructed to maintain an encouraging environment and that caregivers should be always available and must strive to remain patient and calm, with positive and consistent attitudes. In these videos, the use of positive reinforcement strategies was recommended, praising or rewarding the child's successes, and avoiding punishment for failures as much as possible, as well as avoiding the use of unpleasant words or expressions. The recommendation to use punishment during toilet training is not used in current scientific literature, and the recommendations that remain are less aversive than those of the past, involving only verbal reprimands (Kroeger; Sorensen-Burnworth, 2009KROEGER, K. A.; SORENSEN-BURNWORTH, R. Toilet training individuals with autism and other developmental disabilities: a critical review. Research in Autism Spectrum Disorders, v. 3, n. 3, p. 607-618, 2009.). It is believed that if caregivers have professional support during the toilet training process, the occurrence of the use of punishments and other inappropriate strategies will decrease.

Difficulties in the toilet training process were also reported by both children and caregivers, these included: difficulty in understanding the child; regressions; and lack of consistent behavior from each individual responsible for the child's care.

In the presence of stressful events, the child may experience regressions in developmental stages, such as, for example, those with already acquired sphincter control returning to urinate and evacuate in inappropriate places (Mota; Barros, 2008MOTA, D. M.; BARROS, A. J. D. Treinamento esfincteriano: métodos, expectativas dos pais e morbidades associadas. Jornal de Pediatria, v. 84, n. 1, p. 9-17, 2008.; Stadtler; Gorski; Brazelton, 1999STADTLER, A. C.; GORSKI, P. A.; BRAZELTON, B. Toilet training methods, clinical interventions, and recommendations. Pediatrics, v. 103, suppl. 3, p. 1359-1361, 1999.). Regressions or greater difficulties in successful toilet training are common at times such as the birth of siblings, separation of the parents, moving house, or other events that cause major changes in routine and that have an emotional impact (Clifford et al., 2000CLIFFORD, T. et al. Toilet learning: antecipatory guidance with a child-oriented approach. Paediatrics & Chid Health, v. 5, n. 6, p. 333-335, 2000.; Stadtler; Gorski; Brazelton, 1999). Therefore, parents should avoid carrying out toilet training at times like these (Mrad et al., 2019MRAD, F. C. C. et al. Treinamento esfincteriano. Manual de Orientação - documento conjunto Sociedade Brasileira de Pediatria e Sociedade Brasileira de Urologia. 2019. 11 p.).

It is recommended that all caregivers are engaged in the training process for toilet control when it begins, as it must occur simultaneously in all environments that the child attends, in order to promote learning and not confuse the child with different guidelines (Clifford et al., 2000CLIFFORD, T. et al. Toilet learning: antecipatory guidance with a child-oriented approach. Paediatrics & Chid Health, v. 5, n. 6, p. 333-335, 2000.; Mrad et al., 2019MRAD, F. C. C. et al. Treinamento esfincteriano. Manual de Orientação - documento conjunto Sociedade Brasileira de Pediatria e Sociedade Brasileira de Urologia. 2019. 11 p.).

Furthermore, there were also reports of insecurities, frustrations, feelings of loneliness, and tiredness/exhaustion on the part of caregivers. Feelings of guilt, frustration, anxiety, depression, loss of self-esteem, and stress are common in parents of autistic children and influence their quality of life, varying in intensity, depending on the degree of severity of the ASD, the child's intellectual level and independence, in addition to the social support network and professional services available to the family (Morales, 2010MORALES, L. B. Autismo, familia y calidad de vida. Cultura, v. 24, p. 1-20, 2010.). The toilet training process demands constant attention and patience from caregivers, at all times when they are with the child, daily, for months (Clifford et al., 2000CLIFFORD, T. et al. Toilet learning: antecipatory guidance with a child-oriented approach. Paediatrics & Chid Health, v. 5, n. 6, p. 333-335, 2000.), which is intensified in the case of autistic children, due to the difficulties in controlling their sphincters (Cagliani; Snyder; White, 2021CAGLIANI, R. R.; SNYDER, S. K.; WHITE, E. N. Classroom-based intensive toilet training for children with autism spectrum disorder. Journal of Autism and Developmental Disorders, v. 51, p. 4436-4446, 2021.). Moreover, there is a lack of manuals and professional guidance for these parents, as pointed out by the caregivers in this study, which intensifies doubts and insecurities.

In the absence of professional support, it is common for those responsible, when faced with new and/or difficult situations, to follow guidance from people who have an influence on their lives, such as relatives and friends. Furthermore, they also have knowledge that they have acquired from previous experiences (Mota; Barros, 2008MOTA, D. M.; BARROS, A. J. D. Treinamento esfincteriano: métodos, expectativas dos pais e morbidades associadas. Jornal de Pediatria, v. 84, n. 1, p. 9-17, 2008.). It is important to highlight how tiring the toilet training process can be for caregivers and that it generates doubts, causing insecurities. Therefore, it is essential that there is professional monitoring. The occupational therapist works in areas that seek greater autonomy and independence for the individual in daily activities and, therefore, would be a suitable professional to work in the toilet training process, since using the bathroom is one of the activities of daily living (AOTA, 2020), but there was no mention of support from this professional in the toilet training process. Therefore, it is believed that this field of action needs to be deepened in future research and also in clinical practice.

Final considerations

This study shows that the toilet training process is a challenging step for caregivers of children with ASD. Children had greater difficulty controlling feces compared to urine, and daytime and nighttime toilet training generally occurred in two stages. The caregivers used accessories and playful resources as strategies to facilitate the child's understanding and collaboration, and also used behavioral reinforcement and punishment strategies. There were difficulties for family members that were emotional as well as physical. The caregivers did not receive professional help.

Reports of past events can always be expressed under the influence of the emotional impact and memories built during the period, which can be considered a limitation of this study. Therefore, it is important to highlight that there were cases in which the completion of the toilet training process occurred approximately two years before the interview. However, it is emphasized that these caregivers presented very detailed information about the process they experienced.

This study advances knowledge about toilet training for children with ASD, indicating strategies that can make this process quicker and with fewer difficulties for both caregivers and children, and thus contributes to the training of professionals. However, future studies need to be made to further develop effective techniques and management for toilet training in children with ASD.¹1 M. G. Bertolotto: study preparation, collection and analysis of data, writing of the manuscript. L. I. Pfeifer: study preparation, manuscript review. A. M. P. Sposito: study preparation, data analysis, writing of the manuscript.

Acknowledgments

The authors are grateful to the University of São Paulo (USP) for funding the scholarship and the Teaching, Research and Assistance Support Foundation (FAEPA) for funding the publication of this article.

References

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