Conversation with Dr. Maldonado Regarding Autism
Below is a transcript of an online chat in the Spring of 2001 between Dr. Martin Maldonado and graduate students in Ann Murray's distance education course on Infant Behavior and Development offered at Kansas State University.
JC: It has been my experience that children who have autism,
just like all
children, are very different from one another. The common stereotypes
that we have for
children who have autism are not necessarily true.
Martin_Maldonado: if I would offer an opinion, autism is not
a disease, in the normal
sense of the word, but a syndrome. That is a set of behaviors that
are similar or related
but could have many different causes.
AM: Can you clarify the difference between a
disease and a syndrome.
Martin_Maldonado: yes, a disease is a set of manifestations that
usually have a common
cause, course of the illness, response to treatment, etc. a syndrome
is a set of manifestations
that are related or similar but could be caused by many things , different
ones -- for instance
diarrhea is a syndrome, fever is a syndrome. There are many causes
for diarrhea and for fever.
so if one would want to find out the one cause of fever, or one unique
common course, one
would not find it.
Martin_Maldonado: so one of the problems with " autism " research
is that autism, as
someone said, is only a part of the person, there may be different
causes for it like congenital
rubella, encephalitis, an epileptic condition, a degenerative disease.
AP: This would then be a reason for the "overdiagnosis" of autism
that some
have stated?
Martin_Maldonado: Autism is rarely overdiagnosed, something that
is overdiagnosed is a
relative called " pervasive developmental disorder"
JC: Dr. Maldonado, some parents believe that their children became
autistic
after immunizations. What do you think about this?
Martin_Maldonado: there is no clear evidence that this happens.
that is no scientific evidence.
it does not mean that it could not happen. it is common that when a
child has a severe
disorder like that, parents try to link back to a fall, a immunization,
a negative event like a
cold, etc. as far as I know there is no proof that that happens.
MS: What intervention strategies do you think are the most effective
for
preschool aged children?
AS: Can the behavior tendencies be overcome by the child?
RW: What are some of the most beneficial treatments at this time?
Martin_Maldonado: really the response to treatment depends on
the individual child. It is
fairly clear that many children who are truly autistic need some sort
of language therapy,
occupational therapy, and behavioral cognitive therapy, as well as
parents need help.
Martin_Maldonado: I will address the AS question in a moment.
I would like to mention
medications that we do use with many autistic children and they are
helpful.
Martin_Maldonado: For instance, now we commonly would try psychostimulants,
or
medications like clonidine or guanfasine to deal with hyperactivity
and aggressiveness.
Martin_Maldonado: regarding the issue raised by AS, I think this
depends largely on the
severity of the condition to begin with, and the treatment responsiveness
of the child
For instance, the child who develops language before age 6 has a much
better prognosis than if that is not the case
Martin_Maldonado: The problem in answering the question on prognosis
depends on the
"symptom profile" of each child, and their responsiveness to persons,
the degree of the
language impairment and whether they respond well for instance to medications.
AM: At how early an age would you use these medications?
Martin_Maldonado: We use medications commonly at age three. In
rare cases we use
medications before that if the child is for instance severely aggressive
and needs help, or the
child who hits his head, bangs his head bites himself, etc.
Martin_Maldonado: while there is this silence, I would like to
suggest that Greenspan's
concept of multisystem developmental disorder is helpful.
AM: in what way?
Martin_Maldonado: It is helpful because it takes into account
the child's "islands of strength"
or "relatedness", this implies usually that for some children the prognosis
is better.
Martin_Maldonado: it implies a developmental process, the concept
of MSD. That you could
work on different " modules" of the child's functioning and that each
child has a unique
profile of dysfunctions.
DA: Another question Dr. Maldonado, in our text book it stated
that research
suggests that siblings of autistic children are at significantly greater
risk for also exhibiting
autism and other developmental difficulties, what are thoughts on this?
Martin_Maldonado: they are clearly much more at risk, they are
50 times more at risk of
having autism than the general population, only the disease is so rare
that usually the siblings
are fine, but in a few families we see two siblings affected.
Martin_Maldonado: Also, the more distant relatives often might
have " partial
manifestations" of autism, that is persons that are loners, or retiring,
or socially not very
graceful.
AM: What do you think of Greenspan's treatment approach compared
to a more
behavioral approach?
Martin_Maldonado: Regarding Greenspan's approach I think it is
very thoughtful, there is
little evidence about which treatments are better. It think in general
one should try the more
empathic approaches like that of Greenspan. Sometimes, however, with
some children a more
"direct' behavioral modification approach seems to work better.
RW: I was interested in AM's question of with early identification,
can
autism by "cured" as some claim?
Martin_Maldonado: this is a hope more than a reality at this
point.
Early identification should help the brain to develop more its potential
as
the younger the child the brain is thought to be more plastic or malleable.
Martin_Maldonado: The child would be easier to treat, to give
language input, to teach
reciprocity, etc. etc. this does not mean in all cases one would "cure
it but hopefully one would
help more the earlier the intervention.
AM: can you teach them to have a theory of mind?
Martin_Maldonado: yes, there are some programs to try to teach
this, like one designed by
Baron Cohen and his group.
AM: Can you give an example of how this is done?
Martin_Maldonado: it consists of games in which a child is taught
how people operate. like
with facial expressions, or having the child choose which would be
the correct reaction -- it is
with visual aids.
Martin_Maldonado: just one more thing about the Baron Cohen program.
the child, with
games, is helped to engage in trying to discover what might be inside
someone else's mind. we
commonly try to train parents to help children do this with fairy tales,
while looking at
television, "marking" the emotion or explaining the reactions of people,
this is more successful
in the child with "Asperger" disorder.
MS: What are your opinions on Lovaas's approaches?
Martin_Maldonado: regarding the Lovaas approach, my understanding
is that there is more
research on it. I understand it as an intensive behavioral modification
process. unfortunately
behavior modification does not reach the "depths" as the theory of
mind, but helps with
adaptive behaviors and everyday functioning.
JC: Dr. Maldonado, it seems that special "autism diets" have
become kind of a
trend lately. What do you think about this?
TH: There is a family at school who is thinking of putting their
child on the
gluten-free diet. Are you familiar with this and what is your opinions
on it?
Martin_Maldonado: yes, there are many diets now, like 'casein free diet" and gluten free diet. There is no scientific evidence that any of this works, but it does not do any harm really. some families swear that their child is much better with this or that diet. it might be true
Martin_Maldonado: it might be true that some children are sensitive
to metabolites from
certain foods.
GN: Dr. Maldonado, what are your views on autistic-savants?
AM: Do you think these children need hours and hours each week
of intensive
intervention?
Martin_Maldonado: regarding the hours and hours, yes. I think
it is so. However, we do not
recommend that parents "drill" their children all the time. many of
the therapeutic activities
should feel like games really.
Martin_Maldonado: regarding the savant question, this is very
important. Each child has
strengths, and it lends support to the "modular" theory of our mind.
That is, you could have
some modules (like the language or reciprocity module ) not work, but
then the spatial
construction one be overdeveloped.
AM: This would be more in line with Gardner's multiple intelligences.
Martin_Maldonado: yes, exactly. Even if a child is not savant,
it would be very important to
find what they prefer, they like and something they are good at, which
could be used in
rehabilitation or recreation
TH: any suggestions for working with a child that is autistic,
hearing impaired,
abusive to self and others?
Martin_Maldonado: of course TH's question is extremely wide.
TK: While the majority of the children with autism also have
some mental
retardation. How do you need to work with an autistic child who is
also extremely bright?
Martin_Maldonado: TK's question is also quite wide.
Martin_Maldonado: I would say that the brighter the child the better the prognosis.
Martin_Maldonado: I do not think that the majority of children
are retarded as well, only
about half.
Martin_Maldonado: If the child is bright you can use more things.
Many people with Asperger
disorder for instance, have jobs, or are computer " geeks" or even
physicians.
Martin_Maldonado: Asperger would be an example of a "quasi autistic'
person who is usually
quite bright.
Martin_Maldonado: regarding he question of TH, one would say
that the worst symtpoms
should be treated first, and medications can help a lot with self abusive
behavior and with
aggression. It is thought that some children with autism might have
also " bipolar disorder" for
instance, which may be a cause for aggression.
TH: do you have any suggestions for communicating with an autistic
child who is
hearing impaired and understands and uses very little signs?
NC: I have been told that autistic children like routines and
become upset when their
routine is interrupted. If this is true is there a way to design an
environment that could be
designed to slowly allow them to experience new things and enjoy a
change in routine?
Martin_Maldonado: the routines are necessary for the person because
they "freak out" if
something is changed, it is hard for them to imagine new things.
Martin_Maldonado: therefore, it is necessary to widely help the
person to become a bit more
flexible.
Martin_Maldonado: Another common problem is sensory integration difficulties.
Martin_Maldonado: Regarding NC's question, one way to understand
this is that the child
lacks imagination.
MS: I teach a three year old Asberger child that can point to
and name all 50
states receptively and expressively as well as many countries in the
world.
Martin_Maldonado: MS's example would be someone with extraordinary
ability for
visual/spatial things associated with memory.
CF: Melissa, can you have a conversation with him though?
MS: CF, he has to be prompted to respond to 'hi', or to any question.
He also
speaks in third person. "Melissa Needs Help" Which goes along with
Asbergers.
LP: Being that the chance of having other autistic children is
high for parents, what
can we do as professionals to help assist parents with whatever they
may need?
Martin_Maldonado: the chance is not very high for the individual
child, it is high compared
with the general population. The disorder is very rare, only 4 in 10
000 children.
NC: Very interesting. I am a landscape architecture student and
am learning about
healing environments. It would be interesting to learn more about autistic
development and
design environments that may help them heal.
Martin_Maldonado: autistic environments should be predictable,
without fluorescent lights
for instance, without excessive visual or auditory stimulation.
AM: What about weighted clothing?
NC: Do autistic children enjoy playing outdoors or is the environment
too
unpredicatable for them?
Martin_Maldonado: Weighted clothing is an example of a technique
to help the child to feel
'grounded" or soothed with deep pressure, it is a technique frequently
used by occupational
therapists
Martin_Maldonado: remember that " autistic children" does not
exist. an autistic child exists.
so each child has to be tried, exposed and see how he or she reacts.
CS: yes a child with autism.
Martin_Maldonado: having said that, indeed many autistic children
are very sensitive to the
environment. on the other hand, many enjoy outdoors because one is
free and not feeling
constrained.
CP: During a teaching experience, I worked with several different
children with
differing levels of autism. What causes this?
Martin_Maldonado: Regarding CP's question, each child is really
an individual with a
quite different profile of sensitivities, abilities, etc. so each ,
like other people has their own "
level of functioning.
Martin_Maldonado: also, level of functioning varies somewhat
day by day, also in normal
people.
CF: that seems to be a good point, Dr. Maldonado. Every case
of autism is very,
very different.
Martin_Maldonado: There are commonalities in three areas" the
use of language problem,
the lack of imagination or restricted imagination, and the difficulty
in reciprocity" -- outside of
this, each one has their own color, temperament, strengths, etc.
LS: Since an autistic baby does not react/bond with his or parents
like a normal
infant, what would you suggest that parents do to try and handle their
frustrations?
Martin_Maldonado: it does not seem to be true that autistic children
do not bond or do not
develop an attachment, they do.The fact that the child cannot show
the usual manifestations of
attachment, does not mean they do not feel attached.
Martin_Maldonado: there is a research report by Rutter, where
he quotes results of "strange
situation" in autistic children. the classification results, are similar
to those of normal children
LS: How do you get that idea across to parents when their child
is not reacting like
'other' babies?
TK: I've wondered if the regular preschool classroom too active,
loud, changing,
etc. for some children with autism? We've put a lot of emphasis on
inclusion - but I've
wondered if some benefit from a more predictable environment.
CF: Tami, my father-in-law works in the school district and he
said that there are
cases where autistic children are in the classroom but are suffering
because of it...that they
would be better off in a special ed room. Again, I think it just depends
on the individual child.
Martin_Maldonado: it is true that many children are in overstimulating
environments, where
it is harder for them to function, usually parents have to advocate
for less stimulation and
more one to one instruction
Martin_Maldonado: regarding LS's question, I think that one would
not want to scare parents
too soon, but point out perhaps that it would be good to work for instance,
on eye contact,
developing interactive sequences, etc.
TK: I've read that children with autism cannot engage in joint
attention
activities. Is this something we can teach them to do? Or do we need
to find other ways to
accomplish the benefits of joint attention activities?
Martin_Maldonado: we usually have to teach them to do it . At
first the weight is on the
therapist's shoulders but then the child usually should respond gradually,
except in the most
severe cases.
CP: what would be an example of a joint attention activity?
Martin_Maldonado: looking at something together, like a ball,
a clock, etc. and talking about
it, where you and the child look at each and show it to each other
TK: Do you advocate that professionals or paraprofessional work
with the
children most of the time in programs? What kind of training should
they receive?
Martin_Maldonado: the person should be kind, sensitive and empathic,
intelligent and
problem solve, plus humble.
CF: Dr. Maldonado, I hear about autistic children all the time,
but what about
autistic adults? Do they live with their parents, in group homes?
Martin_Maldonado: many live with their parents, a few are institutionalized,
the most severe
ones, who have also developed retardation and many stereotypies. Many
live with parents
though.
AM: Many school districts seem to be hiring paraprofessionals
to do intervention.
Ideally, who should be doing this kind of work?
CS: paras are under paid and many times do not have the education
for
children with autism.
Martin_Maldonado: I think a good understanding of child development,
of principles of
psychotherapy, of developmental psychology would help the intervenors
to treat the child.
there can be no " recipes"
Martin_Maldonado: so I think that it would be good to work with
supervision, it is quite
frustrating to deal day in and day out for instance with a severely
autistic child.
MS: Amen, CS!!!!
CS: here in Topeka paras get around $7
MS: Manhattan district gets $6.30
CS: TERRIBLE.
Martin_Maldonado: this is a problem. Because the work is hard
and at times not so
rewarding, the person has to be trained to appreciate small steps forward.
it is hard for the
child if there is change of paraprofessionals all the time.
CS: I am sure with the low pay the turn over is high and the
child
experiences many faces and has to get readjusted again.
CS: Dr. how many children usually attend the Baby Talk session on Fridays?
AM: I am curious about possible causes. Do you think there is
something that
happens at a particular time prenatally, either due to exposure to
toxins or genetic activity?
TK: At what age are most children identified and begin receiving assistance?
Martin_Maldonado: regarding the question of causes the
causes can be genetic, prenatal
(congenital rubella) and postnatal,during the first year of life.
Martin_Maldonado: children are identified rather late, perhaps
around 2.5 to 3 years of age,
sometimes later, when the condition is not so severe, up to age 4 or
5.
AM: What might happen postnatally? Epilepsy?
Martin_Maldonado: West syndrome, a form of severe epilepsy is one possibility.
CF: my question exactly, AM.
Martin_Maldonado: another possibility is encephalitis, a degenerative
disease of the brain
matter.
TK: Do you see very big differences in the effects of intervention
if they are not
identified early for their severity?
AM: Does Greenspan's approach allow for earlier identification
and the initiation of
treatment?
Martin_Maldonado: I would say that Greenspan has pointed out
ways to look at babies'
functioning quite early on and this would allow more ready identification.
LS: Is autism commonly associated with premature infants?
Martin_Maldonado: autism is not associated with prematurity in general.
Martin_Maldonado: however, many premature children have disabilities
in learning and
hyperactivity, are inattentive, some have problems in relating and
communicating
Martin_Maldonado: regarding TK's questions, this has not been
proven. One can intervene
very early, but if the child is very severe, he/she would not improve
so much.
Martin_Maldonado: one might intervene later, but if the condition
is mild, the child should
improve.
Martin_Maldonado: as a rule, one wants to identify children as early as possible.
AM: I see that it is 8 o'clock and you may be worn out. This
has been very beneficial
to the class. I hope you will come back again!
TK: Thank-you!
LP: thank you
CS: thanks
LS: thanks so very much!
AS: Thanks!
GN: yes, thank you very much
Martin_Maldonado: I enjoyed the activity a lot. Only my fingers
are a little tired, but I hope
that we can do this again soon.
CP: thank you.
AM: Great, I will be in touch about that.
Martin_Maldonado: bye bye
AM: Bye.
DA: bye and thanks
| Home | Announcements
| Members | Sección
en Español | Section en Français
| Newsletters |Slides
|Other Resources | Links