What is autism and why should we raise awareness about this disorder?

By: Yarimar Marrero Rodríguez

April is autism awareness month and at SER de Puerto Rico we want more and more people to know about this disorder, which according to recent data from the Center for Disease Control and Prevention The CDC raised the prevalence figure for the diagnosis to one in thirty-six children. With the desire to foster acceptance and appreciation of autism, this month we spoke with Dr. Francisco González Morales, a clinical and school psychologist at SER.

YMR: We know that autism spectrum disorder is very broad and that it manifests itself in different degrees, so how is autism defined?

FGM: Autism is a neurodevelopmental condition characterized by a deficit in social communication and the presence of restrictive and repetitive behavior patterns. These symptoms affect the development and acquisition of skills that are usually acquired in typical childhood development.

YMR: At what age is autism usually diagnosed and what are the first signs that appear?   

FGM: Most of the diagnoses are made between the ages of two and five, and from the age of two the diagnosis is considered reliable. The most common indicators are delayed communication skills. Other things that can be commonly seen are stereotyped movements, such as flapping, hopping, and repetitive circling for no apparent reason. Behavioral rigidity, which is the insistence that things be one way. The insistence on routines and sensory problems, which are not exclusive to autism, but are very common in this population. These are the most common red flags that lead parents to request screenings or evaluations.

YMR: What tests are carried out at SER in Puerto Rico to rule out or confirm that the boy or girl is within the spectrum?

FGM: At SER we like that our assessment is not merely to corroborate the diagnosis, but that we do a comprehensive assessment where we will be obtaining estimates of intellectual, adaptive and behavioral development. Thus we have a much more robust clinical tool, more useful for the various professionals who will be working with these children. The tools we use are the interview for the diagnosis of autism and the Autism Diagnostic Observation Schedule. Within the diagnosis, severity criteria are given to the two areas to be evaluated: the area of social communication skills and restrictive behavior patterns, in both categories a severity of mild, moderate or severe is given, depending on how many of these symptoms interfere with performance and, therefore, how much support they require to manage these symptoms. Among the most significant factors to consider are the person's intelligence and adaptive functioning.

YMR: As a psychologist, what do you recommend to parents who have just received their child's diagnosis of autism?

FGM: The message that we always want to convey is that, although this is a condition that affects development and the way in which the person communicates and interacts, the child is still the same as they know that they have been watching grow and the important thing is orient themselves, educate themselves and seek access to services that help them to be able to develop their children to the maximum of their potential. We recognize that the management, care and follow-up of a person with autism requires a lot of time, effort and sacrifice on the part of the family members, for this reason we try to guide them and encourage them to request help for themselves so that they can continue to be support resources for their children.

YMR: What strategies do you recommend to young people who are on the spectrum and who are suffering from the concept known as "autistic burnout"?

FGM: In the case of the population with autism, they tend to be more prone to this exhaustion, which is often secondary, not only to social problems, but also to sensory difficulties. Sometimes their tolerance is more limited to certain stimuli, compared to what it might be for a neurotypical person, but at the end of the day the recommendations are similar to what we would give to a neurotypical person, the important thing is to find management strategies and coping that allow us to minimize the impact of these factors that may be causing us exhaustion. How to channel frustration, fatigue, in an adaptive way that minimizes the impact that this may have on social, academic or work development.

YMR: Another related concept is that of “autistic masking”. What do you think about this behavior and why do you think it is due?

FGM: People on the spectrum who are more socially functioning usually integrate into the workforce, to a greater number of social activities and sometimes face difficulties in interaction. It is more difficult for them to adapt to situations, especially when there are abrupt changes or new situations. Many of them learn to mask, to disguise, to behave in predetermined ways based on what they have observed other people doing. Ideally, one would seek to be able to live, work, and educate in environments where there is acceptance of diversity and where they do not have to resort to strategies such as masking to get along better with the people that make up these environments, but the reality is that there are times when this makes it easier for them to integrate and makes life a little easier for them. The real problem is that this requires more effort by constantly acting in a particular way in order to be accepted, changing their natural way of being and is another element that can increase that exhaustion we were talking about.

YMR: What do you think is needed to make visible and raise awareness about the inclusion of people with autism and what are the biggest challenges for this population in Puerto Rico today?

FGM: Social awareness of the issue of autism and how it is managed has been improving, but there is still a long way to go before we really have a culture that accepts and tolerates the great diversity of the people that make up our Island. We must continue the efforts, for example, in the professions, with respect to continuing education. In various professions such as the police, I know that for years we have sent SER representatives who give training regarding the population with autism to the cadets and are ways of raising awareness among public servants. I understand that many times this is easier said than done, but having the knowledge and putting it into practice helps us manage those skills and little by little create a much more inclusive society. The majority of the population I see are children, so the issue of access to services is important. Already in adolescents and adults there are challenges such as being able to establish affective ties, being able to develop friendships and then access to work, as well as continuing to train companies and public agencies. Another challenge remains social acceptance. Our education both at home and in schools, we have to promote tolerance, we have to promote respect, the dignity of our peers, being able to value differences instead of judging them and using them to exclude.