A puzzle of emotions
Receiving the diagnosis of Autistic Spectrum Disorder (ASD) is a moment of impact for any family. Autism is a neurological disorder that affects communication, behavior and social interaction in about 2% of the world’s population, according to the World Health Organization (WHO). There is no single cause or known cure for autism, but there are treatments that can improve the quality of life for people with the disorder and their families.
However, these treatments are often expensive, scarce or inaccessible, especially for mothers who dedicate themselves fully to the care of their autistic children. These women face a routine of physical, emotional and financial overload, in addition to fear of the future and society’s lack of understanding.
To offer a welcoming space, exchange of experiences and discussion of public policies for these mothers, the Special Attorney for Women of the Chamber of Novo Hamburgo held last Tuesday, the 18th, the meeting “Who cares for who cares?”, in the plenarinho of the municipal parliament. The event had the participation of panelists Isa Reichert, art therapist and adoptive mother of Indiara, aged 10, diagnosed with autism; Jaque Raffler, lawyer and mother of João, 3 years old, non-verbal autistic and with other health complications; and Natália Magalhães, music therapist and president of the RS Music Therapy Association (AMT-RS).
The speakers shared their life stories, their challenges and their achievements with the audience, formed mostly by women who also experience the daily life of autism. They reported the difficulties in obtaining the correct diagnosis, access to adequate treatments and the social and educational inclusion of their children. They also highlighted the importance of self-care, the support network and information to deal with the disorder.
A light at the end of the tunnel
The meeting was praised by the participants, who felt welcomed and represented by the panelists. Councilor Lourdes Valim, holder of the Women’s Attorney’s Office, said that the initiative was a success and that she intends to promote more events of this type in the future. “The participants who attended the activity said that they found themselves through the testimonials and speeches of the speakers. I was certain that we should promote this type of event more, in support of mothers who have children with autism. The people who came here left radiant, and they asked us to pay them back for the next event. Let’s not stop here, ”she said.
Good news that cheered up the mothers present was the confirmation that Novo Hamburgo is among the three cities in the region that will receive funds for the implementation of a Health Care Center (CAS) from the TEAcolhe Program, of the state government. The program aims to expand and qualify the care network for people with autism in Rio Grande do Sul, offering specialized services such as diagnostic evaluation, multidisciplinary follow-up and family guidance.
The CAS in Novo Hamburgo will work together with the Specialized Rehabilitation Center (CER IV), in the Rondônia neighborhood. The consultations will be forwarded via basic health units (UBSs) and will have a minimum target of 1,200 consultations per month. The center is expected to be operational later this year.
a daily challenge
For mothers of autistic children, taking care of their children is a mission that requires dedication, love and persistence. They need to deal with the limitations, frustrations and uncertainties that the disorder brings, in addition to seeking the best treatments and professionals to help with the development of their children. But these treatments are not always accessible, effective or respectful of the individual characteristics of each person with autism.
Autism is a spectrum, that is, there is a great diversity of symptoms, degrees and manifestations among people who have the disorder. Some may have difficulty speaking, others may be sensitive to sounds, lights or touch, others may have restricted interests or repetitive behaviors. Therefore, there is no single or standardized treatment for autism, but a multidisciplinary approach that involves different areas of health, education and social assistance.
Among the therapies that can benefit people with autism is music therapy, which uses music as a tool to stimulate communication, expression and social interaction. Music therapy is a regulated profession in Brazil since 2017 and requires training in a specific higher education course. However, many health plans do not cover this type of care, citing lack of scientific evidence or clinical need.
This situation was denounced by music therapist Natália Magalhães, who has been treating children with different variations of the autistic spectrum for 15 years. She said that health plans usually deny coverage of music therapy when patients are already undergoing other treatments, such as speech therapy, ABA therapy, occupational therapy, psychology and medical consultation. “Every time we have a stimulus that affects emotion, memory, we step on very sensitive ground”, said Natália, emphasizing that music therapy can bring surprising results for people with autism.
She said that, in some cases, it is through music that you can hear a child’s first words. “Often it is only within the musical field that this mother hears ‘mother’ and a look directed at her”, she reported. She also recalled that music therapy can help reduce stress and anxiety in mothers, who suffer from overload and social isolation.
Lawyer Jaque Raffler also spoke about the difficulties in getting the right treatments for her son João, 3 years old, non-verbal autistic and with other health complications. She said she had to go to court to guarantee her son’s rights, such as access to ABA therapy (Applied Behavior Analysis), one of the most suitable for autism. She also criticized the lack of preparation and sensitivity of some health and education professionals who care for children with autism.
“The Municipality (of Novo Hamburgo) has accredited itself to have an autism reference center, but consultations are still in a very small number. The calls would be 150 monthly users, if I’m not mistaken. Novo Hamburgo, from what we have registered of autistic people who have an identity card, there are more than 600 boys and 283 cases of girls”, informed Jaque, who defends the reception in health and the inclusion of children in the education network in a respectful and attentive way to their needs.
Art therapist Isa Reichert also shared her experience as the adoptive mother of 10-year-old Indiara, diagnosed with autism. She said that she left behind a successful career as a photographer and chose to become an art therapist to accompany Indi in whatever was necessary to help with her development. She said that she faced many prejudices and difficulties to get the diagnosis and treatments for her daughter, who today attends a regular school and has a happy life.
“I understand that being an atypical mother takes us out of many financial possibilities, including. We often give up our profession to be with the children. This all implies and impacts precisely the treatments that we need to offer them. The State offers possibilities, but it is still not enough”, said Isa, who also highlighted the importance of art as a form of expression and connection with people with autism.
A puzzle of emotions
Receiving the diagnosis of Autistic Spectrum Disorder (ASD) is a moment of impact for any family. Autism is a neurological disorder that affects communication, behavior and social interaction in about 2% of the world’s population, according to the World Health Organization (WHO). There is no single cause or known cure for autism, but there are treatments that can improve the quality of life for people with the disorder and their families.
However, these treatments are often expensive, scarce or inaccessible, especially for mothers who dedicate themselves fully to the care of their autistic children. These women face a routine of physical, emotional and financial overload, in addition to fear of the future and society’s lack of understanding.
To offer a welcoming space, exchange of experiences and discussion of public policies for these mothers, the Special Attorney for Women of the Chamber of Novo Hamburgo held last Tuesday, the 18th, the meeting “Who cares for who cares?”, in the plenarinho of the municipal parliament. The event had the participation of panelists Isa Reichert, art therapist and adoptive mother of Indiara, aged 10, diagnosed with autism; Jaque Raffler, lawyer and mother of João, 3 years old, non-verbal autistic and with other health complications; and Natália Magalhães, music therapist and president of the RS Music Therapy Association (AMT-RS).
The speakers shared their life stories, their challenges and their achievements with the audience, formed mostly by women who also experience the daily life of autism. They reported the difficulties in obtaining the correct diagnosis, access to adequate treatments and the social and educational inclusion of their children. They also highlighted the importance of self-care, the support network and information to deal with the disorder.
A light at the end of the tunnel
The meeting was praised by the participants, who felt welcomed and represented by the panelists. Councilor Lourdes Valim, holder of the Women’s Attorney’s Office, said that the initiative was a success and that she intends to promote more events of this type in the future. “The participants who attended the activity said that they found themselves through the testimonials and speeches of the speakers. I was certain that we should promote this type of event more, in support of mothers who have children with autism. The people who came here left radiant, and they asked us to pay them back for the next event. Let’s not stop here, ”she said.
Good news that cheered up the mothers present was the confirmation that Novo Hamburgo is among the three cities in the region that will receive funds for the implementation of a Health Care Center (CAS) from the TEAcolhe Program, of the state government. The program aims to expand and qualify the care network for people with autism in Rio Grande do Sul, offering specialized services such as diagnostic evaluation, multidisciplinary follow-up and family guidance.
The CAS in Novo Hamburgo will work together with the Specialized Rehabilitation Center (CER IV), in the Rondônia neighborhood. The consultations will be forwarded via basic health units (UBSs) and will have a minimum target of 1,200 consultations per month. The center is expected to be operational later this year.
a daily challenge
For mothers of autistic children, taking care of their children is a mission that requires dedication, love and persistence. They need to deal with the limitations, frustrations and uncertainties that the disorder brings, in addition to seeking the best treatments and professionals to help with the development of their children. But these treatments are not always accessible, effective or respectful of the individual characteristics of each person with autism.
Autism is a spectrum, that is, there is a great diversity of symptoms, degrees and manifestations among people who have the disorder. Some may have difficulty speaking, others may be sensitive to sounds, lights or touch, others may have restricted interests or repetitive behaviors. Therefore, there is no single or standardized treatment for autism, but a multidisciplinary approach that involves different areas of health, education and social assistance.
Among the therapies that can benefit people with autism is music therapy, which uses music as a tool to stimulate communication, expression and social interaction. Music therapy is a regulated profession in Brazil since 2017 and requires training in a specific higher education course. However, many health plans do not cover this type of care, citing lack of scientific evidence or clinical need.
This situation was denounced by music therapist Natália Magalhães, who has been treating children with different variations of the autistic spectrum for 15 years. She said that health plans usually deny coverage of music therapy when patients are already undergoing other treatments, such as speech therapy, ABA therapy, occupational therapy, psychology and medical consultation. “Every time we have a stimulus that affects emotion, memory, we step on very sensitive ground”, said Natália, emphasizing that music therapy can bring surprising results for people with autism.
She said that, in some cases, it is through music that you can hear a child’s first words. “Often it is only within the musical field that this mother hears ‘mother’ and a look directed at her”, she reported. She also recalled that music therapy can help reduce stress and anxiety in mothers, who suffer from overload and social isolation.
Lawyer Jaque Raffler also spoke about the difficulties in getting the right treatments for her son João, 3 years old, non-verbal autistic and with other health complications. She said she had to go to court to guarantee her son’s rights, such as access to ABA therapy (Applied Behavior Analysis), one of the most suitable for autism. She also criticized the lack of preparation and sensitivity of some health and education professionals who care for children with autism.
“The Municipality (of Novo Hamburgo) has accredited itself to have an autism reference center, but consultations are still in a very small number. The calls would be 150 monthly users, if I’m not mistaken. Novo Hamburgo, from what we have registered of autistic people who have an identity card, there are more than 600 boys and 283 cases of girls”, informed Jaque, who defends the reception in health and the inclusion of children in the education network in a respectful and attentive way to their needs.
Art therapist Isa Reichert also shared her experience as the adoptive mother of 10-year-old Indiara, diagnosed with autism. She said that she left behind a successful career as a photographer and chose to become an art therapist to accompany Indi in whatever was necessary to help with her development. She said that she faced many prejudices and difficulties to get the diagnosis and treatments for her daughter, who today attends a regular school and has a happy life.
“I understand that being an atypical mother takes us out of many financial possibilities, including. We often give up our profession to be with the children. This all implies and impacts precisely the treatments that we need to offer them. The State offers possibilities, but it is still not enough”, said Isa, who also highlighted the importance of art as a form of expression and connection with people with autism.
