It has been nine years since one of my five children was diagnosed with ASD (Autism Spectrum Disorder). I remember our pilgrimage by pediatricians, neurologists, psychiatrists, psychologists, geneticists, physiotherapists, speech therapists, early care teams, schools, associations and endless corridors, rooms, consultations and traffic jams.
Of all those memories, many, however irrelevant, have gone directly to my folder of spam, others are active waiting for David’s response to Goliath and feed my nonconformity, and a few remain intact, I don’t know why.
A professional closely linked to the universe of autism, he told me. “Blanca, you parents have to become vital translators of your children with autism.”. And I thought: really? But if when I buy something for my teenage daughter I never hit it, I have 50 unread emails from school, I find out late about the moves with her friends, most of the time I don’t know what they see, what they dance, or if they want pasta or chicken.
And I kept thinking translators, okay, vital, how? And my burden grew. Vital, of utmost importance or transcendence, vital signs, vital space, please, I can’t handle this.
People with autism have difficulties in social interaction, in communication, they have certain restricted patterns of behaviors and interests and sensory disturbances. This causes difficulties in relationships, play, learning, and behavior. And without a doubt, it makes it very, very difficult for its translators.
Therefore, in the World Autism Awareness Day, this Friday, April 2, I would like to make a wish, apart from the end of hunger in the world, the covid, and the nonsense, I want to make a wish for coexistence and inclusion, why don’t we all become vital translators? How can we do it?
- First, awareness: autism is the most prevalent childhood disorder (1 in 54 births, US CDC 2020). On November 18, 2014, the Spanish Strategy for Autism Spectrum Disorders was unanimously approved by the Congress of Deputies. A non-legislative proposal, with a zero budget, which had to be followed by an action plan, and approved within a year. We quote verbatim “Urgent and urgent actions are required by the public powers and political leaders.” However, 6 years later there is no action plan.
- Second, resources: in this document, it is expressly recognized that: 1) the services are overwhelmed, 2) there are territorial differences, 3) the specific and attention teams are insufficient and 4) there is an urgent need to propose strategic lines that promote: access to effective interventions, knowledge transfer, research and training of professionals. Resources are essential to guarantee accessibility to effective interventions, and especially in the school environment. The perception that people with ASD cannot learn is very devastating, we only need the necessary resources: financial, human and technical.
- Third, training: Among all the developmental disorders, ASD is one of the most challenging for professionals. There are a wide range of interventions, but not all are effective. For this reason, the specialization of interdisciplinary teams in interventions with evidence of efficacy and recommended by good practice guidelines is essential. For example, in the United States, 20 years ago the efficacy of interventions based on Applied Behavior Analysis (ABA) was approved, families claimed their rights, legislative changes were made to finance treatments, entities emerged of accreditation to guarantee the correct formation and today, more than 500 universities, offer ABA programs. In Spain there is only one, the Complutense University of Madrid, accredited by ABAI (Association for Behavior Anlaysis International).
- Fourth, participation: family and environment participation is a key success factor in any intervention. This encourages the acquisition, generalization and maintenance of learning. In addition, it favors contact, social interaction and inclusion.
- Fifth, the community attitude and social capital that refers to the connections between people, institutions, social networks, information, and knowledge and generate mutual trust, reciprocity and cooperation. It is essential for solving the challenges faced by communities and for the collective well-being, but it has a special value for people with disabilities.
With awareness, resources, training, participation and an open community attitude, perhaps the next time a child with autism cries inconsolably, someone can tell if they are having appendicitis, want water, or the Wi-Fi is gone.
Another of my memories that remains intact is when Dr. Ivar Lovaas’s son told me that when his father was asked what does the true inclusion of people with ASD mean to you? He answered: “Pay taxes”. Short but intense response. To get to that point, we need many vital translators.
Eddie is an Australian news reporter with over 9 years in the industry and has published on Forbes and tech crunch.