“My life, from waking up to sleeping, is no longer the same. My relationship with my wife is different, my relationship with my son is different, my relationship at home is different, in college, everywhere. look at marriage as a whole, because we are totally focused on developing that child”. Lucas Braga, 31, is the father of Pedro, 5, who is autistic, and 2-month-old Eliza. He found out that his son had ASD (autism spectrum disorder) just under three years ago.
According to Lucas, who lives in Nossa Senhora do Socorro (SE), he and his wife “fell head over heels” in the home treatment instructions, because they lacked money to pay for the necessary therapies and what they got was not an adequate amount of hours. “We almost didn’t even stop to suffer, so to speak. We realize that it is necessary to take care of the [nossa] mental health, but we don’t have that time. Unfortunately, we went through greater difficulties because we had neither the financial issue nor the time issue.”
The lack of financial resources to deal with the onerous treatments that the TEA demand is a big problem faced by most parents. That’s why taking care of your own mental health is even more in the background, because there’s not enough money left.
Anderson Marques, 31, from Brasília (DF), father of Luísa, 4, and Dylan, 2, both with autism, says he knows the importance of taking care of his own mental health, but that time is scarce.
Emotionally speaking, it’s really an exhausting routine, because there are weeks when we sleep 2, 3 hours a night, days we spend full of commitments to therapy, schools, consultations, exams. It’s something we talk about from time to time, that it would be important for us to do therapy too, because if we’re not emotionally well, with our head on straight, maybe we won’t be able to take care of them in the best way. We put aside even leisure, knowing that it won’t be a pleasant experience for them either.” Anderson Marques.
In his case, the shock of the diagnosis was mitigated because he had been suspicious for some time. Despite being told by a trusted pediatrician that his daughter’s apparent delays were “normal” for her age, he was not convinced. It was in a consultation with the neurologist that he confirmed his suspicion.
“For my wife it was more difficult than for me, because I was kind of accepting and seeking information beforehand. After we went to a pediatric neurologist, she pointed out several signs that we noticed on a daily basis, and we didn’t know why. For example , the noise issue. At the time, when I turned on the blender, my daughter was extremely nervous, crying, screaming”, recalls the photographer.
According to Anderson, it was easier to identify ASD in the second child, because they already knew more about it. “Obviously we were hoping it wouldn’t be, but we were already more prepared, we didn’t feel the thud of confirmation so much”, she says.
He points out that each autistic person differs from each other. Between his two children, there are different demands and difficulties, but with a double commitment, which puts his and his wife’s mental health even more in the background.
Support network can help
According to a review of studies carried out by researchers at the Pontifical Catholic University of Goiás, being in contact with an autistic child, as a caregiver, can have a significant and emotional impact on families, in addition to generating higher levels of stress, when compared to caregivers of typically developing children.
According to the study, even though caregivers complain of some clinical manifestations (such as hyperactivity, impulsiveness, self- and hetero-aggression and other conditions), the greatest tensions are directly attributed to the financial burden of the interventions and the lack of social support.
“It is known that the child diagnosed with ASD needs special care and intensive therapy. However, without adequate support, families cannot develop coping strategies for a good quality of life in general”, said the authors.
For the writer, psychiatrist at Unifesp (Federal University of São Paulo) and also autistic, Alexandre Valverde Doctor, depending on the difficulties, the support network helps a lot. “Imagine a mother who has a non-verbal autistic child. The structure and support that the child and the mother will receive allow a new look”.
The psychiatrist also points out that the experience of parents of children with ASD will be very different depending on the degree of autism that child. “In cases of a more severe diagnosis of autism, non-verbal or with an intellectual disability, it is more difficult and demands a lot of attention and dedication from parents. But in many cases, the mother ends up taking on this role, and this ends up having a action and influence on his career, his relationships and generates a feeling of loneliness”, he says.
Mothers are most affected
A study published in the journal of Scientific Initiation of UNESCO (Universidade do Extremo Sul Catarinense) showed that mothers are the most affected by stress, due to the greater overload in the daily care of the child. In many cases, they even give up their professional career and social life, experiencing feelings of loneliness and isolation.
Jaqueline Araújo Muniz dos Reis, 37, from São Paulo (SP), has a degree in administration, but is currently not working and has all her attention focused on her two daughters. The oldest, Luiza, 12, is considered “mild autism”, of support level 1. And, despite this, her difficulties, especially with regard to relationships and sociability, are not minor.
I am in therapy and I was referred to a psychiatric institute too, because I needed to be well to be able to take care of her. She’s had two suicide attempts because of depression, which comes from autism, because she starts to feel like she doesn’t belong anywhere. There is a great deal of ableism on top of the autistic support level 1, because the others act as if he was making it up. And this happens everywhere, from school to therapist. I went to see a psychiatrist who said that it was impossible for her to be autistic because she had empathy. The unpreparedness is surreal.” Jaqueline Araújo Muniz of Kings.
Luiza’s diagnosis, like so many other children, came late and after a lot of misinformation. Since she returned to school in person, Jaqueline says that her daughter has been the target of different aggressions, physical and verbal, for being “apparently normal”, and then, discredited.
“Every mother is happy when her child goes to school, but we are not. We are scared, because we already know that when she comes back, something different will always happen. It’s certainly the cruelest place, and it’s utopia think that is there any perfect institution for an autistic person, there isn’t, especially at Luiza’s degree”, says Jaqueline.
Mom says you can’t be careless in anything. In addition to the fear that her daughter will attempt suicide again, she has the issue of appointment times and even food, because the medication depends on whether Luiza has eaten.
A study carried out by a researcher from the Faculty of Philosophy, Sciences and Letters of Ribeirão Preto, University of São Paulo on childhood autism and family stress showed that coping alternatives are counseling, guidance, social support through child care institutions, mainly, and the therapeutic accompaniments.
Despite undergoing therapy, Jaqueline says she lacks access to places where she could create support networks and share experience and knowledge. “Within the autistic community, there are lectures and congresses. But is this accessible to us, the parents? Only well-known or wealthy people go, I don’t see it reaching the vast majority: low-income people, people who really need to be there”, account.