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.
Skills
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:
http://www.almadzib.com
If you would like to know more about my writing you can visit my web site:
http://www.almadzib.com
References:
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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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What a brilliant explanation but more than that, I feel the motivation to say: children can learn.
ReplyDeleteI 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!
Thanks for taking the time to read this post!
ReplyDeleteI'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!!!
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.
ReplyDeleteThanks for sharing.
Thank you Johannes!
ReplyDeleteEvery 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!!
You have a talent, you can explain complex things with an easy language and I thank you for that
ReplyDelete