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
 

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