April is Autism Awareness, an international effort that allows us to learn more about Autism Spectrum Disorders (ASD) and the services this group and their families need to develop their full potential.
It is estimated that one in every 59 children in the United States was diagnosed with some form of autism spectrum disorder by 2014 when the Centers for Disease Control and Prevention (CDC) identified an increase in diagnosed cases compared to previous years. These children require special services and support. By 2015, Puerto Rico was estimated to have more than 28,000 diagnosed cases. The earlier they receive care, the greater their opportunities become.
ASDs are described as neurological conditions that manifest in early childhood and can cause significant social, communication, and behavioral problems. As for learning skills, people with autism may be gifted, with unique abilities and skills, and they can also have conditions that make their daily lives and social interaction challenging.
On World Autism Awareness Day, (April 2) the United Nations reaffirmed their strategy and commitment to “equality, equity and inclusion and to promoting the full participation of all people with autism,” and stressed “the importance of affordable assistive technologies to support people with autism to live independent lives and, indeed, to exercise their basic human rights. Around the world, there are still major barriers to accessing such technologies, including high costs, unavailability and a lack of awareness of their potential.”
However, another major challenge people with ASD face is getting others to learn how to interact with them. This disorder, which mainly affects their behavior and social communication, exposes them to stigma and discrimination. So, it is important to raise community awareness and create conditions for integration, respect, and equal treatment every day, everywhere and to provide work opportunities. Allowing them to fully participate in civic life is beneficial for their well-being, that of their families and society in general.
In Puerto Rico, the Act for the Wellbeing, Integration, and Development of Persons with Autism - which in 2012 changed previous 2003-2004 policies – set forth, among other measures, “to promote the early detection, diagnostic and intervention of this disorder, provide for the creation of a Family Support Program, provide for the specialized continuing education of health professionals who work with persons with this disorder; provide for mandatory health coverage for the Autism Spectrum Disorder population.”
There is still much to be done. Families with children with ASD have asked for more services to meet their needs and support to access independent living. The lack of educational services and specialized care is one of the factors that drive many of these families to move to the mainland.
Law 220-2012 created the Steering Committee. In March 2018, this commission submitted to the Legislature a report with recommendations for amendments to the statute to update and expand it. According to their proposal, in the United States, care for children with ASD from birth to age 17 can range from $11 billion to $60 billion. The cost goes from $1.4 million to $2.4 million through the life of a person with ASD. According to the document, diagnosis, early intervention, adequate services, and better development opportunities can reduce these costs.
People can easily access CDC material with ASD information aimed mainly at parents and health care providers. This Autism Awareness Month brings an opportunity for everyone to explore more about the characteristics of these disorders, to learn how to relate to this population, and to offer support and empathy to their families.