Autism

Autists have disabilities in three fields: communication, social interaction, and behavior.

They either speak few words or, in the case of larger vocabularies (such as those of high performing autists), are prone to repeating sentences they hear elsewhere, uttering them in a different than “normal” intonation, and finding it hard to maintain a conversation. Since they cannot handle abstractions well, metaphors are virtually incomprehensible to them, and they therefore record only their literal sense. Having to learn two languages, since knowing that for instance “mesa” and “table” represent the same object requires some abstraction, can be an almost overwhelming challenge for autists in general.

They would rather be with themselves, which doesn’t mean they live “in a world of their own”, as the poor and stigmatizing platitude would have it. They may be able to play with others but, if not encouraged, tend to feel better on their own. Usually avoiding eye-to-eye contact, they would rather focus on a detail of the person they’re talking to. Some of them don’t like to be touched or to exchange physical caress, but it all varies much between different autists.

They may adopt repetitive gestures and movements, such as clapping arms, rocking their torso back and forth, or uttering non-verbal sounds (“eeeeeeee”, for instance) — such are the stereotypes, which contribute to the awkward glances they occasionally get from people. Some autists don’t like to have their routines changed and may become seriously annoyed if any object is removed from its usual place. There are those who try to hurt people as well as themselves when they have outbursts, but not all of them have these types of reactions.

The literature on the syndrome repeats that 70% of the autists have mental retardation, but it is impossible to have any precise rate. One thing is for sure, though, ant that is once an autist is stimulated, he will not step back — some advancement is, fortunately, inevitable, because there is plasticity in their brain. And there are the so-called savant, those who have great skills for some subject: mathematics, informatics, drawing, etc. However much their interests ought to be stimulated in these circumstances, autists from this group are not to be confused with other overly gifted individuals nor exposed to spectacular displays of their knowledge, because they also have communication, social interaction, and behavior problems.

Autism has been diagnosed at earlier ages now. There is still a widely accepted idea that, before age 5, it is difficult to make an accurate assessment, but a great many diagnoses are clear at age 3, and there are worldwide efforts — which includes Brazil! — to obtain these results between the first and the second year of life. The earlier the therapeutic intervention, the better the chances autists will have to progress. A children’s psychiatrist or psychologist who is versed in the subject is an appropriate professionals to look for. Unfortunately, most pediatricians cannot identify the condition.

An increased wealth of information on autism and recognition of how comprehensive its characteristics may be — with some overreaction at times, because we all have some autistic traces, which doesn’t mean we are all autists — have led to an increased number of people being diagnosed as having the syndrome. While in 1980 they talked about four in every 10,000 worldwide, they now talk about one in every 1,000. In the United States, this ratio would be one in every 500 people, and amongst children, one in every 150.

The history of autism is still short. It was only in 1943 that US based Austrian born Leo Kanner gave this name to a group of children he observed. One year later, another Austrian, Hans Asperger, published a thesis, “Autistic Psychopathy”. Before them, the word “autism” was only used as a symptom of schizophrenia. Both things were still mixed for quite a long time, though, but it is now known — or, at least, it should be known — that they are not related.

For a long time, also, the cause of autism in children was attributed to their parents: they were cold, distant, which led the children to withdraw. So much so that the figure of a refrigerator-mother was created, a cruelty that started to disappear in the 1960’s, when new studies showed that there was a lot more genetics behind autism than the pioneers originally supposed. Since then, thanks to new research work, it has been more thoroughly established that the syndrome is totally genetic-based. Still, unlike the Down Syndrome, which can be detected upon childbirth from the phenotype and the isolation of a chromosome, there is no certainty that one day the biological causes for autism will be completely established.

There is no cure, either. It is only fair for desperate parents to believe in panaceas such as removing the mercury from their children’s bodies or even surgery. The only way towards development (not cure) are therapies. The problem is that there is no single way forward. There are several and, as I see it, anyone who sticks to one of them as a dogma will commit an act of violence to their own intelligence and to that of the very autistic individual they are trying to care for.

There are common features to autists, of course, but there are also distinguishing ones — the latter probably in greater numbers. Each autist is like a world of its own, and trying to apply to one child the therapies that worked for another does not warrant any success, by all means. This is why parents hardly ever get to follow a single path, and this is not exclusive to Brazil. Faced with doubts here and disappointments there, they usually take too long (if ever) to find a structure that they really trust and where they may see their children evolve.

My lay opinion is that extremes are to be avoided. The stricter behavior therapy based largely on the Applied Behavior Analysis (ABA) method may make achievements towards bringing them to society standards, but it places affections far into the background and does not necessarily take the autistic individual’s intelligence into account. There are reports of children who could behave very well in schools and behavioral clinics, who would put things in their proper places, just as they had been taught. Outside, however, they hardly ever knew what to do with those skills they had learned. Training is crucial, but let’s not robotize!
The other extreme, a psychoanalytic approach, has fallen short to deal with autism — despite the many conquests some professionals have exhibited, particularly in France. Psychoanalytic keys, such as working with the unconscious, are very slow to open doors for autists, if ever. The important aspect in this type of approach is that they underline autists’ affections, feelings and possibilities to express themselves.

Even in the USA, where ABA is a canon, many trends have come up that try to mitigate behavior techniques. Floortime, for one. In Brazil, a mixed country where affections and sensorial aspects are most widespread, blindly adopting the behavioral line is stupid, to say the least. It can and must be seasoned with other references and charged with affection for as much as each autist is willing to go.

Concerning education, the want of formulas is even more remarkable. Regular schools are usually not prepared to accept autists, whereas the special ones accept them in standardized fashion. Choosing one or the other, reconciling both… This is an ordeal for every parent. It is the child who will somehow provide the answer, according to his/her development and the pleasure he/she experiences in each different setting.

Evidently, schools are a more difficult topic in developing countries, where public policies do not suffice to the “normal” ones, let alone to those with special needs. In Brazil, there are not so many institutions of excellence, and the very few instances are usually the outcome of efforts made by parents, such as those who created the “Casa da Esperança” (House of Hope), in the capital city of Fortaleza, state of Ceará, or the AMA-SP (Associação de Amigos do Autista, or Association of Friends to Autists) in the state of São Paulo. But these problems do occur in rich countries, too. In the United Kingdom, the father of an autist child who was dissatisfied with the minimal options and possibilities in his country, writer Nick Hornby joined a group of concerned people to create a special school (the TreeHouse) and even organized a book to raise funds.

About the difficulties in Brazil, I prepared an article in 2006. In December of that year, when I went to court to receive Henrique for the vacation period, Roberta handed me some sheets of paper stapled together. The first ones were a report on how Henrique was doing in the Australian school, and the last one was a copy of my article, as if she were saying, “See? Even you say Brazil is bad, so Henrique really has to stay away.” It looked like a slapstick comedy scene.

Difficulties are international, but Brazil is a bit exaggerated at times. In the 2005 crisis of the Lula administration, for instance, there were many politicians and columnists who would refer to the government as autistic. They meant that the president didn’t know what was going on around him, that he lived in a world of his own. Those people helped to further stigmatize others who have nothing to do with that and who deserve the right to live in peace, far from the marshes where a great many politicians move about. But George Bush — who, by the way, cut funds for research on autistm — and Australian prime-minister John Howard — who made discriminatory statements and issued like policies — are not in the least any better!
One thing is for sure, though, and that is autists’ inherent difficulties totally keep them from being spiteful. Lying, for one thing, is almost impossible for them, let alone tricking or consciously hurting someone. This is why they — perhaps even more than any other person — deserve to be treated with honesty, understanding, and are never to be used as ladders by people who wish to achieve purposes that have very little to do with them.

With regards to respect for autists, in broad terms, the best example is that of Temple Grandin, from the USA. She accomplished the feat of writing (with the help from another person) an autobiography, which is a contradiction in terms for an autist. Deeply fond of animals, she developed revolutionary equipment for animal farming, in order to prevent suffering on slaughter, and became one of the world’s leading professionals in that area. As the father of an autist says, we don’t have to ask whether our children could be Temple Grandin, but whether we ourselves could accomplish that. In her book — the autobiography, I mean, because she produced others — Temple relates that she understood virtually everything that was spoken around her, she just couldn’t communicate. This is why respecting autists while talking to or near them, while trying to hear them, and while acting allegedly on their behalf is a very serious matter.

For Henrique, autism has been, I suppose, a double edged sword. On the one hand, it is an obstacle, because he cannot express his pain and anguish, nor ask why he has to undergo so many and so profound changes. Could he talk, would his mother have been successful in taking him to Australia, separating him from his father? On the other, autism protects him from the world around. A virtually inexplicable world to him, which therefore leaves him in optimal conditions to isolate himself, to do whatever pleases him within that which is offered to him and not make any effort to understand what is said around him, because the language of those who are supposed to be caring for him does not make any sense after all.

Fortunately, for these people and for Henrique himself, he is very affectionate, not aggressive at all, and is most likely not going to transform his lack of understanding into aggression. But, in this last vacation period in Brazil, he showed to have reinforced some of the stereotypes, such as that of jumping in the same place, and to have receded in his capacity to focus on activities. When one goes through what he has, there are drawbacks when one comes out the other end. How long will he still be able to go through, and with what reactions, is yet an open question.