Parenting Stress and Autism in times of Covid19: Recommendations in pre-diagnosis, diagnosis and concern for the future

What is stress?

Stress is part of the natural response that we have when facing different demands from the environment, it is a phenomenon that affects all human beings. Its essential for our survival since it prepare us to react quickly to the stimuli that we perceive as threatening, so it is a very relevant adaptative response. Nevertheless, chronic stress, which entails long periods of exhaustion, could take a long-term toll on your physical and psychological wellbeing.

Autism and stress

As I mentioned before, autistic individuals have impairments in social interaction and communication, in addition to sleep, sensory and eating disorders, also an important percent of autistics have different levels of intellectual disabilities and comorbidity with behavioural and affective disorders. Autistic teenagers have 40% more risk than neurotypical adolescents to develop affective or mood disorders, a percentage that increase in teens with level 1 autism to 65% (Attwood, 2007), which decreases their tolerance to face stressful situations, leading them to suffer constant meltdowns.
There is no doubt that being a parent already involves a considerable level of stress, adding the characteristics of autism, in comparison to other disorders, results in a much higher level in the primary caregivers of children on the spectrum, with a feeling of intense stress overload that affects their physical health making them prone to develop immune system, cardiovascular and gastrointestinal issues, and increase risks of depression, anxiety, sleep disorder and other kinds of psychological distress.

All these concerns hinder the self-reflective process of monitoring your own health, to which also you must add the lack of support and contention in the stages prior to diagnosis, up to the social isolation that occurs after the diagnosis confirmation.

Pre-diagnosis stage

For many parents, this is experienced as a pilgrimage where anxiety and uncertainty prevail, in an intense search for answers to concerns about delays related to the stage of the child's development. This is where the first confrontation with the health system occurs, which often delivers diagnoses late or constantly changing over time, which is confusing and perpetuates the feeling of stress for prolonged times, being frequent to hear from parents about doctors that have told them phrases like "your son does not speak because boys are lazier than girls, let's wait a few years."

Recommendations

At this point, my professional recommendation is always to bet on early stimulation as a basis, mainly to take advantage of neuro plasticity of the child's brain to provide them with adequate resources for his motor and sensory development, in addition to the development of speech. For this it is good to seek assistance from an Occupational Therapist and a Speech Pathologist, who are the ones who have the most knowledge in these areas, whom currently, because of what is happening with covid19, are uploading different activities to do at home with the aim of strengthening these areas on Facebook and Instagram.

Certainly the diagnosis provides a guide, however, due to these irregularities, I also recommend keeping a record either audio or written of the doctor’s diagnosis, hopefully with a signature to encourage them to do the process seriously avoiding vague and irresponsible comments about the child's development as the example in the previous paragraph.

When obtaining the diagnosis

At this stage feelings such as fear, uncertainty, guilt, and denial often appear. Also, we find lack of support and understanding from society around autism, which is often show early in the relationship with their own family due to the lack of information and awareness that currently exists in our environment. This causes the behaviors of autistic individuals to be seen as incomprehensible and irrational, which complicates family life such as going out to the homes of relatives, friends, vacations, etc.

There is a tendency in society to blame parents for their children's behaviours, fostering rejection and isolation, creating a stigma not only for the child, but also for the entire family system. This is evidenced in schools and institutions that isolate or simply reject the child.

Recommendations

It is therefore essential to implement an awareness-raising process in schools, not only to implement a better support system for the autistic child, but also educating their peers considering that, in the future, today's children will be parents, teachers, coworkers or neighbors of neurodiverse individuals (autistic or other processing differences) at some point in their lives. Invite your support professionals to dialogue with educational systems promoting a transdisciplinary vision of the child.

I also encourage to increase awareness in your family system through the recommendation of books and movies that address the disorder. I recommend the movie "Temple Grandin", "My name is Khan" and "Mozart and the Whale", and tv series such as “The Good Doctor” and “Atypical”. In addition, I recommend books by autistic individuals such as John Elder Robison's publications, "The Reason I Jump" by Naoki Higashida, and specialists such as "Autistic Spectrum" by Clelia Reboredo, "Uniquely Human" by Barry M. Prizant and, of course, this blog 😊.

Another important step is to learn to ignore the judgment of others that refers to autism as something undesirable and tragic. I understand that there are very difficult and painful moments, but that does not mean that, that being, that child, has to be encapsulated as a tragedy, it is just different and they and their families, such as your family need an empathetic and constructive vision with respect and love from all of us.

In this path some will move away and others will come into the life of the child and your family, some therapists will become friends and you will discover communities with parents with more or equal experience in the subject with whom you will share fears and strategies, or simply people who on a daily basis will make you feel accepted and considered. The spaces exist, you must take advantage and look for them with patience, stay calm.

Concerns about the future

A large percentage of parents feel that one of their main concerns has to do with the child's autonomy and the need for additional resources, in addition to access to employment and supports for an interdependent life in the future. Unfortunately, I do not have the answer to these concerns, I can only collaborate from my area encouraging more professionals to get involved in the world of neurodiversity from a human and dignifying perspective.

One of the most important reasons that led me to write this blog is precisely to educate everyone who wants to know about autism and neurodiversity in a free and relatively affordable way, in addition to making visible what are and how to help in times of crisis, in order to eliminate judgment and encourage support for those parents, because they live with more than enough injustices and lack of resources. In my perspective, the great enemy is the ignorance and indifference of people and the system, so educating is the first step to improve the future of autistic individuals and their families.

But what can parents do with these constant worries about what is to come?

Recommendations

Having an autistic child (or relating to an autistic individual) teaches us to live in the present, every day there is a challenge that involves learning. Instead of thinking about the past, in unsolved situations, or the difficulties that will come in the future, let's focus on the present, without judging and reviewing the options that we now have at our disposal, on the people who are now supporting you, either through concrete help or simply listening and understanding you, in the love you receive from your children, in those laughs, in the affection that they give you in their own way and with their own way of seeing life.

Live in the now, enjoy the small advances, and keep hope when facing setbacks, for this, consider that you and your family need to be healthy and well. Is important to rethink your identity, taking your appreciations of yourself calmly, reducing expectations and allowing rest.

You must accept and face instead of avoiding and denying. Recognize ​​what you have learned, managing to develop more patience, compassion, humility and tolerance, this enriches your personal and relational life, those are characteristics that make the strongest and enables you to have true and lasting relationships with those who matter.

Breathe, have a glass of water and slow down.

Take advantage of this reality of social distancing to keep in touch with your support networks and connect with friends and relatives, taking advantage of this meeting format that is less invasive and requires fewer transitions. Enjoy this time to explore with your children, without hurry, allowing yourself to be amazed at the occurrences of these little teachers.

In the next post, I will talk about a concrete strategy based on mindfulness to relax in brief moments.

Stay safe, stay at home.

A big hug for you! ♥️