"It is very likely that he will never speak", "he will not be able to go to school", "he will not be able to read and write". Pilar Lodoño was just beginning her journey along the autism path with her son Martín, when she began to hear similar phrases.

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Determined to avoid these sentences and with no knowledge of the subject, she dedicated herself completely to her son, quit her job and her professional career as an industrial engineer, and began researching different learning methodologies. This reality is a common denominator among mothers and fathers of autistic children.

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The story of Pilar, Autism and Neurodiversity Consultant, was one of the stories at our first Spanish language Fuckup Nights Autism Edition event. In it, we had the opportunity to hear other similar stories, such as that of Lucía Patterson, Founder of APS Community, as well as a talk with Alexia Rattazzi, Child and Adolescent Psychiatrist and co-founder of PANAACEA, a non-profit organization that seeks to improve the quality of life of autistic people and their families.

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For this blog, we talked to Gaby Fusco, who works in the communications area of this organization, about the impact that the lack of government support has on the mental health of parents of autistic children. Gaby, in addition to working in the communications area of PANAACEA, is the mother of two girls, one of whom is autistic.

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What does Fuckup Nights have to do with the topic of autism? Does the concept of failure fit into parenting an autistic person?

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Caring for the caregiver

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When we talk about autism, we think about children. What about their caregivers? What about their family, their support network and the figures around them?

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Gaby comments:

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"One of the main challenges is to understand as a mom that you have to give yourself a space for yourself. We live with the desire to learn and consume information because we know that this gives us the power to get closer to our children, and no doubt it is important, but we must also know how to slow down the ball to think inward in a daily space of connection with oneself."

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The main challenge is to understand that you have to give yourself space. What do I need? Do I have a space to externalize this? An activity that I like to do so I can connect with it?

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Mothers and fathers engage in activities that seek to co-regulate their children's nervous systems. If mom or dad is not well, their daughter or son will be able to perceive it. In order to be well with another person, we must first be well with ourselves. In this way we share ourselves fully and happily, establishing a healthy bond and strengthening ties.

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We must emphasize the importance of recognizing ourselves as a human being with interests and needs, rather than a father or a mother, this is extremely important to understand that at times we must connect with our inner self and for this it is important to know how to delegate and ask for help.

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Information is power

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Gaby came to PANAACEA as an attendee of an expressive arts workshop for parents and having visited several doctors and potential therapists for her daughter. It was an exhausting process during which she constantly questioned why her family had been put in such a situation.

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"In PANAACEA you work day by day from another place (...) It changes your life, the way you look at your child. And you learn to focus on their strengths and enhance them. It is a place where I could and can find strategies and a change in the way I look at my daughter's condition".

-Gaby Fusco

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A parent's self-care, in addition to the mantra of caring for the caregiver, is having access to truthful, quality information, shared with kindness and clarity, knowing their children's rights, rights to health and education. Self-care is not only meditation, relaxation and leisure. It is also breaking down myths in society and in parents about the tools and strategies available. Working as a team and with professionals.

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Words matter a lot. And many times autism is linked to a disorder that instantly denotes negativity. Gaby and the folks at PANAACEA choose to use the word condition rather than disorder, because when you talk about condition you are emphasizing the inherent characteristics of an individual.

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"A word that speaks to us of diversity, that makes us embrace it as a society and enrich each other with the diverse characteristics that each one of us can contribute as a community," says Gaby, who also believes that parents with autistic children are constant and resilient.

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They have to face challenges that have nothing to do with their children, but with society. Resilience is ingrained in them. Something we can identify with in

Fuckup Nights 😉

Do conversations about failure fit into parenting an autistic person?

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"Failure, for me, is when a mother wants her child to go to a regular school and has to go to multiple schools to get it. Failure is wanting to exercise a right, and encountering a barrier in society." -Gaby Fusco

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And yes, if failure has to be mentioned in the context of autism, it is that of society.

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A mother or father of an autistic child has several concerns, some of them have to do with the future of their child: the life of a child after a parent, the opportunities he/she will have when his/her primary caregiver is gone, the opportunity to work, to love, to have a full sexual life and to be happy. Uncertainty.

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In addition to being informed, planning for adolescence, adulthood and learning to anticipate, it is essential to have a sense of control, and to combat fear about the future. However, this task of combating uncertainty does not remain only in the closest circle of an autistic person.

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Unfortunately, almost all families who receive a diagnosis of autism see it as a punishment or a divine test to overcome. This is due to the lack of information, to the capacitism perpetuated by the absolute neglect of the health and education systems for the autistic population to fully exercise their rights. This governmental neglect also leaves the families of autistic people helpless.

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Additionally, the medical model based on deficits and the lack of updating of supposed autism specialists on the neurodiversity paradigm, cause families a sense of uneasiness, helplessness and fear.

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These social and systemic conditions cause families to feel isolated, scared, confused and fall prey to all kinds of medical frauds. In addition, there is no lack of criticism from other families, or from relatives and neighbors who sadly are not interested in learning about autism either, since, at the end of the day, it does not affect them so directly and compassion (not pity) is sadly absent on many occasions.

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And that's where perhaps one more fuck up to society's list comes in: false inclusion. And that's something we can all help to improve 😉.

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Coexistence, a term that is very present in PANAACEA: respecting others and their characteristics. It is not a matter of depending on others and seeking to be given a space, to be "included". It is not about favors, it is about rights. It is only about a life in full participation, one where the different characteristics of all are celebrated. Come on, the solution to many social problems.

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But what does that have to do with me? I don't have an autistic family member, you ask. Just take a closer look. One out of every 54 children is autistic, that is an important figure and one that surely brings us closer than we think to this issue. Maybe that child throwing a tantrum in the street, or that mother bursting into tears at the mall, belong to different realities, ones that deserve less condemnatory opinions and more empathy.

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We can all change the reality of many people when we understand that children are not the problem, the problem is our lack of empathy and how inflexible our concept of inclusion is and how unwilling we are to accept the enormous diversity of characteristics that can exist in a child. And ultimately, in any human being.

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We are not asked to read a manual to understand, to watch video tutorials and read books to be more understanding, it is enough to stop and ask, to get rid of prejudices. At the end of the day, the story of Gaby, of Pilar and of several people who have taken the step to tell them, are similar to many other stories of mothers and fathers of children with developmental differences.

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We would like to thank Gaby Fusco and PANAACEA for their guidance during our first edition of Fuckup Nights Autism and the guide to write this special content. One of the ways in which they carry out the mission of their organization is through the TEM Online Workshops, a virtual space for parents to acquire tools to work on a daily basis at home. These workshops are free and are conducted online in Spanish, aimed at the entire Spanish-speaking world. For which, we would like to invite you, either for you or for anyone you think may be useful: tem.panaacea.org

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This article was re-edited by Raquel Rojas in April 2023.