Working with limited health care resources: who suffers?

During the past few years, I have come to treasure my participation as president of the International Consortium of Autism Institutes (ICAI).  Now when I travel I do so as an ambassador to the organization.  This has led me to have many meetings with local autism support organizations and to visit many healthcare providers and educators. Mark Twain once famously said that, “If you hold a cat by the tail you learn things you cannot learn any other way”.  These meetings, while visiting a foreign country, have taught me about the different worldwide perspectives and approaches used for autism.  They have allowed me to better understand what is being presently done, improvised, and what is still needed under different circumstances and environments.  It should come as no surprise, that all around the world, parents, rather than governments, have taken a proactive role looking for anything that could be applied to the benefit of their children.

In China, massage therapy is part of the daily autism treatment.  Specially before entering school, a massage may be a way of calming down a patient and relieving anxiety.  Massages also help to desensitize those children with tactile sensitivities. In Russia, children with autism are gathered before school in order to promote team building exercises.  Children are taught that results when working together are far better than when working alone. This appears to be of most benefit for the subtype of autism having an attention deficit disorder.

In many of the most successful special education schools that I have visited, the immediate community is usually engaged. They have learned to accept the children and to protect them.  Furthermore, in these schools, parents are active participants in the educational process.  They have to attend the classroom along with their child and work as teaching assistants.  Mind you, the parents work with other children, not their own. This is meant to help the children generalize their social skills.

It is unfortunate that in terms of autism, health care has lagged special education in many countries.  There are often limited health care resources and those that are available are often not manage adequately. In some countries, adequately trained physicians are few and their attention is usually focused on more pressing health concerns, e.g., cholera, malaria. These seemingly universal problems, have made me realize that there is a need to establish resource-appropriate treatment protocols. We need to institute teaching and training for physicians in order to emphasize recognition and early diagnosis. Depending on country and facilities, we need to pinpoint where health care is compromised and then try to overcome these obstacles.

As president of ICAI one of our principal initiatives has been to promote the idea and implementation of universal health care.  This is something governments should recognize as a right of the people.   Without universal health care, lower income individuals will never receive the care they deserve.  This problem is compounded as lower income individuals have a higher prevalence of complex chronic conditions in the midst of higher inpatient costs for rural locations.  Indeed, poverty procreates, in many cases, advanced disease at presentation, malnutrition, and treatment deaths due to lack of supportive care and misdiagnosis.

For those interested in the problem of poverty, social justice and autism, please read my previous blog on this matter.  As I have said, although race and socioeconomic status are not predictive of autism, there is a substantial bias in the United States and other countries as to whom we identify as autistic. In the end, the consequences of socioeconomic and racial/ethnic disparity are such that poor children are not properly diagnosed and treatment withheld, specially so, if you they are disabled.

Reference

Casanova MF. Autism Updated: Symptoms, Treatments and Controversies. Amazon Publishing, 2019.

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One response to “Working with limited health care resources: who suffers?

  1. Excellent article, Dr. Casanova. Autism is very expensive and the government should do much more to help the individuals and families. The only people who benefit from the current situation are those who do ABA. This is how the current situation is beneficial to them: As of now, they are the only ones that are recognized as the authority on autism treatment and insurance companies pay them for their work/services, however lousy it may be. Most of the time is spent collecting the data and doing the paperwork instead of teaching the child the language skills and/or other skills that the child may need. Those parents who can not afford to buy first-class food or teaching materials or have an option other than ABA will basically accept anything that the child’s BCBA tells them to be true. When they fail and it is nearly 100 percent failure, they will have a valid excuse, which is: “The child has autism, and you just have to learn how to live with it and accept it. ABA is evidence-based treatment and if we can not fix the problem, no one else can” If we had people like you being in charge, we could provide families with more than just one approach to treating and helping kids on ASD. As, always, thank you for your hard work.

    Have a pleasant day,

    Peter

    Liked by 1 person

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