Parents with ASD: "Unexpected events and changes in a child's routine throw me off much more than any other parent"

BarcelonaPeople with autism spectrum disorder (ASD) may experience parenthood with particular intensity for several reasons. Aina Durán, a psychology graduate and student in the Master's program in General Health Psychology, cites the constant changes involved in caring for a baby or child, such as irregular schedules, unexpected needs, crying, and other sensory stimuli. "These can be especially demanding for someone who needs predictability and routine," she points out. Difficulties may also arise in interpreting subtle nonverbal cues from the child, especially in the early years, when they cannot verbalize what they feel or want. This can generate insecurity about knowing if the baby is hungry, in pain, or tired. According to Durán, in addition to the support provided by the Friends Foundation to people with ASD, there is also the sensory overload that, "as a result of loud noises, musical toys, lights, or the inherent clutter of parenting, can quickly lead to exhaustion." It is also necessary to pay attention to executive functions such as planning, organizing, and coordinating tasks, which can present a considerable challenge. Finally, the psychologist states that many autistic mothers and fathers have been "victims of discrimination and infantilization" by other parents or educational professionals, which "increases stress and can contribute to isolation."

Very strong focus and literalness problems

Carles Vallvè, an industrial, electrical, and computer engineer, was diagnosed with ASD at age 39. This late diagnosis meant that throughout his childhood, adolescence, and part of his adulthood, he had to live with a series of executive, social, and emotional difficulties, among others, which, once diagnosed eight years ago, finally seemed to have a justification. Despite the challenges he faced, Vallvè, who also has three other diagnoses (ADHD, giftedness, and dyslexia), was certain he wanted to be a father. He also wanted to be a young father. "At 25, it would have been perfect," he acknowledges. But life led him to become a father for the first time in February 2023, with the birth of Clara. One of the characteristics of people with ASD is their restricted interests, which border on obsession. This is a focus that Vallvè placed on the arrival of his first daughter. "My personality led me to throw myself into the prenatal appointments and classes, as well as Clara's labor and postpartum period," she recalls. Once her daughter was born, she had to deal with some misunderstandings with the healthcare professionals. Initially, this happened, for example, during Clara's weekly weight checks. Vallvè remembers that at each appointment, the nurse would ask if they had bathed the baby yet. They would reply no, because the midwife from the prenatal classes insisted that it wasn't necessary during the first few weeks. "Finally, on the fourth visit, the nurse told us we could bathe her and explained that, normally, since new parents find it hard to resist the urge to do so, they insist it's not necessary, but of course, after almost a month, it was a good time," explains Vallvè, who acknowledges these instances of not taking things literally. "You have to tell me directly, 'bathe her once a week,' not 'don't bathe her for now'; or 'give her this medicine twice a day,' not 'give it to her once or twice a day, or not at all, depending on how she is'; I need clear and organized instructions," he acknowledges.

Changes, a major handicap

Vallvè acknowledges that, at first, things went relatively smoothly with Clara. "Mar and I shared the childcare duties, and when one of us was overwhelmed, we could ask the other for time," he recalls. He enjoys cycling and playing padel, and he tried to find time to continue doing so, because stepping outside the parenting bubble from time to time is advisable and, in his case, as a person with autism spectrum disorder (ASD), also necessary. As Macarena Gil, a neuropsychologist at Guttmann Barcelona, ​​explains, autistic individuals also have a greater need to find "spaces for internal regulation during moments of anxiety and stress," an important aspect for everyone, but especially for people with autism, who are more likely to experience mood swings.

"Parenthood, whether you're neurodivergent or not, is a huge challenge; I don't want to play the martyr or belittle any other mother or father, but it's true that, aside from the sensory overstimulation that comes with a small child, the unexpected events and changes in routine, so common when my other parent is around," he points out. Similarly, life transitions, such as when adolescence arrives, which are a challenge for any family, are even more so for a person with ASD, who often needs stable and predictable environments, and require additional support. "This doesn't mean they can't adapt, but rather that they often need more advance notice, more structured preparation strategies, and sometimes external support to cope with the new rhythms and demands," Durán clarifies.

Back to therapy

The challenges doubled with the birth of Josep, their second child, now eight months old. They could no longer divide their time as much as before, and raising them demanded 200% of their time. "Raising two small children without outside help, and going months without proper sleep, is exhausting," acknowledges Vallvè, who recently had to return to therapy during a breakdown. The first thing his therapist, also a new mother with whom he feels a special connection, prescribed, based on empathy, was that he needed to sleep. "My mental health was at stake, so from that moment on, I sleep in a different room from the one Mar sleeps in with the children. This doesn't mean I don't enjoy sleeping with them; on the contrary," he clarifies. With hindsight, Clara and Josep's father also regrets not seeking professional help before becoming a father to anticipate the challenges that would follow. "I think it was a mistake not to do it, because it probably would have gone well for me, but at that time my life was more or less stable and I didn't consider it," she admits. In this regard, Aina Durán points out that parents with ASD can especially benefit from, among other resources, adapted cognitive-behavioral therapy (CBT) to address anxiety, rigidity, and improve emotional management. Likewise, there are other resources such as acceptance and commitment therapy, which helps parents act according to their personal values despite difficulties, and parenting skills training, which offers concrete tools for setting limits, resolving conflicts, and creating predictable family routines. There are also support groups for neurodivergent parents, which become spaces for sharing similar experiences.

The role of the environment

When asked if not fitting in with peer groups (parents from school, the sports team, extracurricular activities, etc.) is one of the biggest fears among parents of children with autism spectrum disorder (ASD), Macarena Gil, a neuropsychologist at Guttmann Barcelona, ​​says not especially. "On the one hand, because society's perspective has changed a lot in terms of open-mindedness and respect for different attitudes and ways of seeing the world, and on the other hand, because parents of children with ASD tell us that they find it easier to participate thanks to the use of mobile apps by schools and families." Meetings with other parents at school are, in fact, one of the things that causes Vallvè the most anxiety, and she admits to making the effort for her daughter, "even promoting certain extracurricular activities that, once they happen, make me feel a bit out of place." Vallvè, who works as a Physics and Technology teacher and is a tutor at a high school, however, acknowledges that these appointments make him feel somewhat uncomfortable and represent an extra effort for him, a feeling that increases as the group of parents attending the appointment also grows.

In this regard, the neuropsychologist from Guttmann Barcelona emphasizes that, rather than reinforcing the skills of autistic individuals, the focus should be on what skills we all, as a community, need to strengthen to ensure satisfactory, fulfilling, and enjoyable participation. Participation in which people with ASD don't need to deploy a whole range of compensatory strategies to fit in—strategies that, as Vallvè acknowledges, "besides requiring excessive effort, mask our difficulties so effectively that others end up minimizing them and, therefore, expect a response categorized as normal." In this respect, Gil points out that, "if the community of families allows the autistic person to be themselves, without needing to hide from the rest of the group, it's already helping a great deal." And here, she concludes, it becomes crucial that people with autism feel free to share their diagnosis, explain who they are (since no two people with autism are alike), and share their vulnerabilities.