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"Inclusion is always the ideal for Autism", says Neurologist

Carlos Gadia
Settled in the US for over 30 years, the Neurologist from Porto Alegre, Carlos Gadia is a clinical expert in Autism.
Settled in the US for over 30 years, the Neurologist from Porto Alegre, Carlos Gadia is a clinical expert in Autism — a highly complex condition that affects a patient’s ability for social interaction and communication. Gadia, who studied at the Universidade Federal do Rio Grande do Sul (UFRGS), is Associate Director of the Dan Marino Center, in Florida. This institution was created from a generous donation by the famous former Football player, who gives the institution its name. One of Marino’s children has been affected by Autism. Last week, during a visit to Porto Alegre, Gadia talked to Vida about diagnosis and treatment of Autism Spectrum Disorder; a disease characterized by repetitive behaviors known as stereotypies. Gadia highlighted the most important challenges faced by health professionals and families in Brazil. According to the specialist, there is reason for optimism on the scientific area: genetic manipulation is close to enable personalized medicine. In the near future, it could be possible to identify specific personalized drugs, which could be used to normalize the neural function of each particular child. This would diminish the intensity of symptoms, in some cases even have a general positive effect on the brain function. There will be a revolution. Next, some of the main points of the interview.

Is it still difficult to diagnose Autism?

In global terms, diagnostic is made at an increasingly precocious age. In Brazil, there is still a quite significant deficit in the medical training. Autism is rarely covered during training, it does not appear in the study plans of related professional schools, like speech and occupational therapists or psychologists. There is a great need to change this situation. Nonetheless, Autism is relatively easy to identify.

The cases differ substantially from one another. That makes identification more difficult?

Until years ago, the classification of autism in the Diagnostic and Statistical Manual of Mental Disorders (DSM), was the source of great confusion among families and healthcare professionals. There were definitions of Autism, Asperger Syndrome, Pervasive Developmental Disorder, etc. With the fifth edition of the DSM, all of it was substituted by a unique term: Autism Spectrum Disorder (ASD). Now we speak about a disease with a wide spectrum of manifestations. There are children whom are severely affected, that do not communicate and lacking of practically any social interaction. There are also children whom are able to speak and capable of socialization. Those who are severely affected are much more easily recognizable. What used to happen in the past, was that an important number of those children were diagnosed with mental retardation, without being correctly diagnosed as Autism. Changing the classification normative was very useful. However, there still are problems to diagnose and evaluate the children that are less severely affected.

To what signals should the parents and schools pay attention?

Historically speaking, the thing that parents note the most is delays on the development, or the total absence, of speech. Unfortunately, there are still cases where people rather wait to see what happens next. It is not rare to find health professionals that delay treatment. For example, when they see a two-year old child that still does not speak, the professional says that it can wait until the kid is three years old, or that boys take longer to speak than girls, or that he knows of several kids that do not speak either. That is unacceptable. There are clear norms regarding what is acceptable and not acceptable regarding communication. Children who do not say words before 12 months of age... that is not acceptable, is not normal. It is absolutely abnormal that two-year old children cannot say two-word sentences. In general, and after that the children are evaluated, the parents realize retrospectively that there were other signs: the kid did not established eye to eye contact, did not respond when his or her name was called o that preferred to isolate.

Is a regular school the best place for autistic children?

Inclusion is always the ideal situation. Nonetheless, it is required that the school is prepared to offer what the child really needs. If the child is put in a class, without any type of appropriate intervention - that is not inclusion – it is exclusion. The idea to include all autistic children from the beginning, is correct only if the schools can offer the required support. Unfortunately, in Brazil that is the strangest of things.

Thinking of your daily labor in the US, what is there still to be done in Brazil?

These are two very different realities. Autism research in Brazil is of high quality, but the results do not reach the endpoint: the child and its family. Everything is missing from the picture… support for the research being done, capacity to train the required numbers of health professionals, a policy system that identifies the interventions that really work. From the points of view of practice, diagnostic and treatment, Brazil is in a very bad shape. If we were to  disregard all that I have already mentioned, the big difference is the educational system. By United States law, public schools must provide adequate education to all children, regardless of the challenges the children face. If necessary, public schools will offer speech and occupational therapists to teach the children in the best possible way. It is an abysmal difference compared to Brazil.

Personalized Medicine for an effective treatment.

We firmly believe that future medicine will become something, which we cannot even imagine today.