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The immense challenge of living a life with autism

autism neurodevelopmental disorder

Life per se is a challenge, living with autism enhances the challenge. Context, for people transitioning through life with autism, can function as a barrier or a bridge in coping with day-to-day living. Caregivers of people who require very considerable help, (DSMV) could foster in them basic issues such as self-determination and alleviate the burden of always deciding for them, validate their personality and work on executive functions to achieve a better adaptation to the world.

Life with a person with autism

Family and caregivers play a crucial role in the life of the person with autism.

Parents, siblings and caregivers

Every person, as a child, needs love and respect to help him or her better understand the world, to be alert and aware. Understanding the world is not easy. Trying to understand the truth according to “someone” is complicated, we need help to understand an idea and even more when it is foreign to the usual thoughts. Living life with autism has a double task, but transforming thinking and abandoning false beliefs takes time. However, for everyone’s sake, making thinking more flexible can help us to improve a person’s life with autism. This ability usually appears in childhood, however, as adults it needs to be strengthened in order to stop expecting a person with autism to be “rehabilitated” and to bring him/her closer to the norm.

The dynamic of each family is unique, like fingerprints.

Parents

Parents who validate life with autism recognize the individual’s personality, desires and needs as in anyone else, allow them to make decisions from an early age on basic issues, according to their abilities, such as taking the fruit offered by mom or dad, choosing which t-shirt to wear, playing with water or dough, as this contributes to form their character. This is a sign of respect for life with autism.

Siblings

Siblings when they are older than the one living with autism seem to find an opportunity to feel relieved from parental surveillance because all the attention is directed to the little one, and when they are younger, they often feel abandoned affectively. Parents must find a balance in the attention for all the members of the family. For those living with autism, the presence of siblings, in the best of cases, is a great strength, since the bond that unites them provides them with unique experiences of fraternity, respect, diversity and learning that are valued over time.

Caregivers

Caregivers of people with autism are very knowledgeable about living with autism. It has to be this way since the reality that life itself demands goes beyond theory. There is talk of peculiarities in five areas of development, deficiencies in theory of mind, central coherence and executive functions. All this represents a real challenge to achieve what has been proposed regardless of the level of help required by the person.

The person living with autism

It can be difficult for anyone to understand the good intentions of the parents. Although the paramount interest encompasses adaptation, health, education, well-being, inclusion, etc., it is not possible to achieve it at first glance. The mind of the person living with autism is characterized by being inflexible, possessing deep interests, sensory, social, communication and behavioral peculiarities, and always having the need to experience situations full of opportunities for participation. As it is evident, life with autism demands constant attention, which can be extended in time because social behavior does not exist in the same way forever, it changes all the time according to the context.

Well-being is a broad term, which is not difficult to achieve if we rely on visual resources such as agendas, calendars, and everything that structures the environment and works as a predictor of what is about to happen, since a part of our brain maintains tranquility by feeling safe. With this support, life with autism is lived with less anxiety knowing in advance that the routine of visiting grandma every Friday has changed due to the rain forecast and instead, she will be visiting on Thursday so everything will be fine.

Health as a source of happiness

Living life spontaneously brings enormous happiness to many, however, life with autism requires controlling that spontaneity. Therefore, it is advisable to start by getting to know the sensory profile of the person living with autism by focusing our attention on the processing of the so far known 8 senses.

Discovering the hyper or hypo reaction to sensory stimuli through sight, hearing, touch, taste, smell, proprioceptive, vestibular and interoceptive sense will be to some extent possible, maintaining and/or procuring their health, for example, offering natural foods (to those who are not intolerant) free of sugar, preservatives, gluten and casein that not only nourish them, but also nourish them, will be fundamental. We are what we eat and what we eat influences behavior, sleep quality and, therefore, the acquisition of skills. For those who live with autism, this aspect can be really complicated if they have a leaky gut, since the consumption of certain foods works as an opiate, causing highly disruptive behaviors.

By generating an adequate environment, the degree of irritability decreases, so regulating noises or flashes of light, using a certain tone of voice, taking care of aromas, containing them, providing a safe space, will maintain the willingness of those living with autism to interact.

Life with autism is lived by a human being and it is absolutely necessary that the environment be as friendly as possible while strengthening his mental flexibility, which will gradually provide him with adaptive skills.

The role of education in the life of the person with autism

Education is a whole subject. It starts at home and continues at school. Inclusion begins right at home by accepting and understanding the condition, making the necessary adaptations starting with the ideals of all of us who coexist in life with autism, providing the person with security and affection and also with skills that are fundamental to attend school. The school offers many opportunities to all and its sensitive intervention is expected, without prejudice and with great respect for diversity. The brain is a social organ that requires the group to develop and learn. Those who live with autism enjoy the same rights and are subject to the same obligations as everyone else. It is by being at school that the right to increased experiences and opportunities for participation are asserted. School is an excellent learning environment.

Once in school what is expected is that the person living with autism adapts and for that, the executive functions play a very important role. A brain capable of solving spontaneous situations also sets in motion emotional processes.

Adapting to life with autism

Adaptation involves a whole set of skills and for those living with autism it implies a great challenge. It is advisable to develop and/or strengthen one by one as the case may be. Play is an excellent way to learn and to put these skills to work.

Living with autism can be exhausting since one is subjected to often unattainable expectations such as “functioning” neurotypically. There is stress from not knowing the rules of living outside of life with autism.

Autism is present in the world, although the world is not made for it, however, as they coincide on the same plane, the degree of adaptation of one or the other should be reasonably proportional.

Conclusions

It is not possible to separate autism from the person, if he/she is destined to a life with autism. Culture, through values, is what defines human competences. Studies provide ways, means and resources to bring people living with autism closer to what the majority (called society) expects. The invitation to society is to know the condition in depth, to adhere to universal design by generating recreational, school, work, medical, etc., spaces that facilitate the inclusion of those living with autism, to try to support them with creativity and imagination, to teach things that make sense in their life with autism and to make adjustments that help them to learn and develop independent learning.

Empathy will have to be the flag with which we all navigate in the face of autism, because it touches us all. It is in our hands to be the bridge that leads those living with autism to a happy autistic life.

References

Diagnostic and Statistical Manual of Mental Disorders Fifth Edition (DSM V) American Psychiatric Association https://forwardteacher.com/author/smirabal/

Carnero-Pardo, C. Thematic interview with Javier Tirapu Ustárroz: Executive functions [online] . Circunvalación del Hipocampo, mayo 2020 [Consulta: 2 de agosto de 2021]. Disponible en: https://www.hipocampo.org/entrevistas/JavierTirapuUstarroz.asp

Reaño, Ernesto. (2015). Neurodiversidad, autismo y electronalidad: un esbozo [Neurodiversity, autism and electronality: an outline].

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