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Tuesday, July 10, 2012

Autism spectrum disorders: a detection of abilities and not dis-abilities.

I found once a quote which is supposed was written by Volkman and Cohen and it says: “If all individuals diagnosed with autism could be together in a room, the most striking fact would not be their similarity, but how different they are between them". And I would like to  add: and if at the same room we can  join all therapists and people who do not live with children with autism  every day, them it would be very easy to see what children cannot do, but only a few would be able to admire their skills.

I learned the word autism more than 20 years ago during my work in a children's hospital in Mexico. Those days, the diagnosis was confused with psychosis and not many persons spoke so publicly about the topic. The only therapeutic proposed was medications that maintain quiet to children and if at home behavior and socialization did not work, then the only one answer was a hospital. There were some behavioral therapies that were used with a few children, but the therapeutic goal was to keep them quiet.

Nobody spoke too much, at least in Mexico,  of other developmental disorders such as syndrome fragile X, Rett syndrome, the Prade Willi syndrome, childhood disintegrative disorder, tuberous sclerosis, Williams syndrome, Angelman's syndrome or Asperger's syndrome, and if anything was said something of the autism spectrum disorders, the only one word was autism.

In contrast, Autism Speaks is currently an international voice that gives help to autism children and families and their numbers reported that 1 in every 88 children has autism diagnosis at the United States. 

Certainly there is extensive information now. On the internet when someone types the word autism appear at least 9 860 000 results. But there is still something on the entire set of signs and symptoms that children have and that every parent knows so well. Something that every site, campaigned and paper, sometimes forget: we started to talk about autism and we forget the children and the people behind it. 

As experts we can’t hide our perplexity, because the autistic spectrum has a variety of features, even though they have tried to group into versions of the DSM and ICD, there is always a child that presents all the symptoms and none of the above.

At a conference held in the CISAME in 2010, once all the experts talked with passion about what each of us we have studied about the disorder, a girl of 8 years raised her hand. I think we all ignore it for a few moments, and it was not we did not see her, but there were more hands trying to ask those things we wanted to share, so she raised her hand higher, to the point that we all thought that she would jump on the person near to her to get our attention. We finally gave her the word and with reverence asked us: "why do you speak about autism?" before autism I am a girl when will you speak about children with a diagnosis of autism? ".

She was my motor and I started to write about what it’s possible, all the things any child can with or without  developmental disorders, the reason why so many  experts have sometimes spent a lifetime saying loud and strong things beyond the word autism, and even beyond all behaviors that have caused distress to the parents, or the moment when they receive the diagnosis, much more than the long list of No that parents and children here every day: they cannot talk, you cannot write, they cannot go to school, they  cannot dance, they  cannot go to College, they cannot make anybody smile, do not, do not not. 

Don’t they breathe?, perhaps don´t  they grow?, let’s go slowly.

Looking for evidence

More than 50 years ago was suspected that autism is linked to a specific gene. At least 17 candidate genes linked to the disorder to varying degrees and in different ways have been reported so far, he points to others who may have incomplete information or translocate. That's why there is more research with families who have more than one child with a diagnosis of autism, but so far, there is not a single research that points to a single gene.

Even those development disorders such as the fragile X or Rett syndrome, where there are a limited number of genes responsible for all the symptoms, can show variations in the development of the children and there were found mutations or genetic drafts that do not tie in all cases. That’s one reason why unique children can be found, children who have more skills than ICD show in its pages.

On the other hand, mirror neurons have been mentioned as responsible for the difficulties in socialization and empathy, however, some children "learn" to socialize depending on environmental conditions.

Vaccines were during some years claimed as responsible of autism, but it has already proven that they are not guilty of triggering, and even better all the story was an invention.

A new group of evidence show than the virus HHV-6 can be part of some cases, but there is only few articles about it.

And I can continue mentioning factors, from environmental, family, social, and even cultural, but no matter how much time you can take to try to explain the causes of autism spectrum disorders, the truth is that the great need remains to help children and their families to have a more happy life.

And following my passion about the brain and trying to find answers where the disorder originates, I began to look for answers, trying to see what everyone sees, that no one looks. 

All studies point out about all the neuro degenerative aspects and brain differences, particularly in the white matter, which are the nerve fibers, myelinated responsible for the transmission of information from one cell to another. Differences in the amount of gray matter that is the neural bodies and dendrites devoid of myelin have also noted. With this in mind, there is no doubt autism is a neural problem.

I’ll stop for a second to say that for many years researches know that the brain is plastic, moldable, flexible and it adapts to environmental emergencies. This feature is probably given by evolutionary aspects, what you have may change with the passage of the years. And although many generations are required to see a general shift to level species, if it is possible to see brain differences from various learning tools. 

In the case of normal development, even the brain does not know what kind of environment must adapt, the plasticity allows to babies to develop those skills that will be used in the environment. Those actions can make him or her feel happier, those that will be reinforced, to speak, walk, and smile. This usually this reminds me an old question: Is an artist born or made?. 

The answer that I like most is that perhaps all of us concert pianists, but we never had the opportunity to beat a piano.

For example, it’s known that even though children are able to recognize foreign languages, they will lose this ability to give priority to the native language, finally it is that is going to provide an effective socialization. This is clear that neurons survive depending on usage. 

It seems that nature has very clear use of resources and their exploitation, by what is not the luxury of having neurons which does not use, and will maximize those that serve as tools in response to the environment.

The brain with developmental disorders

Under this principle of plasticity, the idea is that the neurodegenerative process apparently happens even before the first symptoms, but to the passage of the cerebral arrangement, imprisons areas that are losing connections and that imprisonment, and eventually becomes little used. However, there are other areas that manage to survive and become efficient, much to its way.

If every child had deficiencies such as are indicated by the diagnosis books, it would be easy to diagnose the disorders, however, it seems to me that it is not. Even for experts, it is easy to confuse the symptoms. For example, in a study conducted in the Autism clinic of CISAME, in Mexico city, it was found that 27% of cases should not be diagnosed as part of the autistic spectrum, because the clinical histories revealed perinatal problems as causes of the symptoms and signs of children.

That’s why I prefer to invite parents to analyze: what children can do?. The main symptom is focused on the shortcomings of communication, but even in children who do not speak show means of expression. This is the case of Carly Feischmann, who had never said a word, until by chance, his parents and therapists discovered that she was able to write on a laptop and that opened the door to communication.

But, what else can your child do?, if you search you will find that your child can do things, not like the others, perhaps  he or she does things with a special nuance, perhaps so sophisticated as the protagonist of the series, Touch, or much to his or her own way. Even maybe she or she smiles with that expression of a few friends, but for you, without place to doubt is a smile.

On the basis of brain plasticity, don't give up, your child's brain will adapt to circumstances, perhaps slower and not as high, and rightly so as other children. But if support you, there is no doubt that surprise.

Perhaps the rule is not to see him with pity, that feeling of disability is destructive, it makes us think that you can't, you don't know, that not this and not the other. Try, do it twice, three, four. How the Olympic athletes get so amazing victories?, they do the same movement over and over again until they can  make it perfect. It’s worth the attempt.

Finally, would like to recall that no brain is equal to another, that all we learn, feel and see the world in different ways, that's why I do not understand, and I would admit my ignorance, I don't understand the why focuses attention on what children cannot be achieved, as if genetics or disorder destination, if there are many evidence of brain plasticity and achievements perhaps small for humanity, but who become great strides of each child with any developmental disorder. Despite the difficult thing is sometimes deal with their tantrums.

I think that scientist, parents, and society must work in the understanding of disorders, not to ask for money, not for gain notoriety or be at the front of the photo, but to give a chance for adaptation to children, who one day will grow and become adult.

The big mistake is to ask that society adapts to them, asks to parent to stop their lives to one side for the sake of their children. One day the parents won’t be around to look after that child, so the goal is adaptation and not the adequacy.


Without falling into the trap that all children are like the books, I can say that several researches find math skills, music, the visual Arts, as the most reported, but, have tried to give your child a computer or a tablet computer?, maybe help you at the garden?, maybe the macrame is a choice... those who have in addition a little or a lot of obsession compulsion can be excellent for quality control. 

I would say, don’t think in them as the persons who can do nothing, find that they can do, and you will find the talent. The goal is to find what they can do. Even the blind deaf child can feel and smell and that can be enough to discover the world.

And for those who have brothers, enforces the same. My goal in education is that children can find their talent as young as possible so they can be happy children and successful adults. Perhaps a skill as an adult is to find the gift of each one of these children. Achieve communication, by any way is worth. I'm sure you'll be amazed of what you can  find. 

Being a child with autism is not a diagnosis, it is a tag of life, but most importantly, YOU have a life to decide what to do with it. They just need someone who provides one hand to achieve this.

Alma Dzib Goodin

If you would like to know more about my writing you can visit my web site:


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Belcastro, ML., Mastoianni Pinto, S., Calcagno, M., Salomón, F., y Marengo, R. (2007) Trastornos del espectro autista y déficits auditivos. Arch, Neurol. Neuroc. Neuropsiquiatría. 13 (1) 73-77.

Carvajal-Molina, F., Alcami-Pertejo M., Peral-Guerra, M., Vidriales-Fernández, R., y Matín-Plasencia, P. (2005) Datos neuropsicológicos de niños con trastorno autista y desarrollo intelectual en el intervalo considerado normal. Revista de Neurología.  40 (4) 214-218.

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  1. What a brilliant explanation but more than that, I feel the motivation to say: children can learn.

    I didn't know you were interested in neurodevelopment, I read your blog and I saw you as a techer, focus on learning.

    Thanks for this piece!

  2. Thanks for taking the time to read this post!

    I'm glad I could share some of my passion. Learning is linked with neurodevelopment by many reasons. First of all, it let you understand how the neuro modulation works and the other reason is because is easiest to see the effect of the enviroment. I actually began studying neurodevelopment and then I focused on learning. When I say eveybody can learn, I mean, everybody!:)

    I have been in some classrooms of basic education, to teach them any specific topic, I love talking about science, but my career has been on Higher Education:)

    Thanks for read this post!!!

  3. A great perspective which I also advocate. The way you talk about the subject, is exactly the way I also think we all should approach it.
    Thanks for sharing.

  4. Thank you Johannes!

    Every time I talk by first time with parents, if they have a child with any development disorder, they sound like a gun machine, explaining all the things their children can´t do. I can understand all the fear and level of frustration because they don't see a "normal" child, and all the implications, but as soon we explain that children can do things and they begin to focus on that, they relax. I don't know if this has an effect on the child but I can say after few weeks of work, parents begin to say: My child is doing this and that!!, to me is the same child, but with a different perspective. They begin to enjoy every little effort, and every one counts.

    I think about you and your research about metaphors, because once I wrote: "there is no learning without brain and there is no brain without learning" and a couple editors of magazines in Spain wanted to kill me because they claimed it was a "Silly" (you can understand stupid" statment).

    But later, I found out that it's possible learning with no brain (prions, bacterias and virus) and you need some level of learning to help to people recognize your brain. Because usually parents and teachers say: this child learn nothing!... but as soon as a child begin to move slowly and get some sucessful steps, they change their mind. It's like learning, specially language is the interface between brains.

    So my goal is explain that and see learning process in a different way, because I believe every child can learn.

    Thank you so much for take a moment to read me and comment this post!!

  5. You have a talent, you can explain complex things with an easy language and I thank you for that