HANDOUT #1
Asperger's Syndrome
Written by Stephen M. Edelson, Ph.D.
Center for the Study of Autism,
Asperger's syndrome was first described by a German doctor, Hans Asperger, in 1944 (one year after Leo Kanner's
first paper on autism). In his paper, Dr. Asperger
discussed individuals who exhibited many idiosyncratic, odd-like behaviors (see
description below).
Often individuals with Asperger's
syndrome have many of the behaviors listed below:
Language:
Cognition
Behavior
Researchers feel that Asperger's syndrome is probably
hereditary in nature because many families report having an "odd"
relative or two. In addition, depression and bipolar disorder are often
reported in those with Asperger's syndrome as well as
in family members.
At this time, there is no prescribed treatment regimen for
individuals with Asperger's syndrome. In adulthood,
many lead productive lives, living independently, working effectively at a job
(many are college professors, computer programmers, dentists), and raising a
family.
Sometimes people assume everyone who has autism and is
high-functioning has Asperger's syndrome. However, it
appears that there are several forms of high-functioning autism, and Asperger's syndrome is one form.
The Autism Research Institute distributes an information
packet on Asperger's Syndrome.
Click here to learn how
to obtain this packet.
©1995, Copyright
information
HANDOUT #2
Frequently Asked Questions about Autism
Temple Grandin, Ph.D.
Assistant Professor
Colorado State University
Fort Collins, CO 80523,
1. How do I know if my child has problems with sensory over
sensitivity?
Sounds or visual stimuli that are tolerated by normal
children may cause pain, confusion and/or fear in some autistic children.
Sensory over sensitivity can vary from very slight to severe. If your child
frequently puts his hands over his ears, this is an indicator of sensitivity to
noise. Children who flick their fingers in front of their eyes are likely to
have visual sensitivity problems. Children who enjoy a trip to a large
super-market or a shopping mall usually have relatively mild sensory
sensitivities. Autistic children with severe sensory sensitivities will often
have tantrums and other bad behavior in a shopping mall due to sensory
overload. These children are the ones who will most likely need environmental
modifications in the classroom. Older children and adults, who remain nonverbal
and have very little language, often have more severe sensitivities than
individuals with good language. Children with auditory or visual sensitivity
will often have normal hearing and visual acuity tests. The problem is in the
brain, whereas the ears and eyes are normal.
Continued next page
2. What sights and sounds are most likely to cause sensory
overload or confusion in the classroom?
Every autistic child or adult is different. A sound or
sight, which is painful to one autistic child, may be attractive to another.
The flicker of fluorescent lighting can be seen by some children with autism
and may be distracting to them. It is mostly likely to cause sensory overload
in children who flick their fingers in front of their eyes. Replacing
fluorescents with incandescent bulbs will be helpful for some children. Many
children with autism are scared of the public address system, the school bells
or the fire alarms, because the sound hurts their ears. Screeching electronic
feedback from public address systems or the sound of fire alarms are the worst
sounds because the onset of the sound canNOT be
predicted. Children with milder hearing sensitivity can sometimes learn to
tolerate hurtful sounds when they know when they will occur. However, they may
NEVER learn to tolerate UNexpected
loud noise. Autistic children with severe hearing sensitivity should be removed
from the classroom prior to a fire drill. The fear of a hurtful sound may make
an autistic child fearful of a certain classroom. He may become afraid to go
into the room because he fears that the fire alarm or the public address
systems may make a hurtful sound. If possible, the buzzes or bell should be
modified to reduce the sound. Sometimes only a slight reduction in sound is
required to make a buzzer or bell tolerable. Duct tape can be applied to bells
to soften the sounds. If the public address system has frequent feedback
problems, it should be disconnected.
Echoes and noise can be reduced by installing carpeting --
carpet remnants can sometimes be obtained from a carpet store at a low cost.
Scraping of chair legs on the floor can be muffled by placing cut tennis balls
on the chair legs.
3. Why does my child avoid certain foods or always want to
eat the same thing?
Certain foods may be avoided due to sensory over
sensitivity. Crunchy foods such as potato chips may be too loud and sound like
a raging forest fire to children with over sensitive hearing. Certain odors may
be overpowering. When I was a child I gagged when I had to eat slimy foods like
jello. However, some limited food preferences may be
bad habits and are not due to sensory problems. One has to be a careful
observer to figure out which foods cause sensory pain. For example, if a child
has extreme sound sensitivity, he should not be required to eat loud, crunchy
foods; but he should be encouraged to eat a variety of softer foods. When I was
a child my parents made me eat everything except the two things which really
made me gag. They were under-cooked slimy egg whites and jello.
I was allowed to have a grilled cheese sandwich everyday for lunch, but at
dinnertime I was expected to eat everything that was not slimy.
To motivate a child to eat something he does not like, it
is recommended to have a food he really likes such as pizza right in front of
him along with the food he dislikes. He is then told that he can have the pizza
after he eats a few bites of peas. It is important to have the pizza right
there in front of him to motivate eating something he does not like.
Continued next page
4. How do I toilet train my autistic child?
There are two major causes of toilet training problems in
children with autism. They are either afraid of the toilet or they do not know
what they are supposed to do. Children with severe hearing sensitivity may be
terrified of the toilet flushing. The sound may hurt their ears. Sometimes
these children can learn if they use a potty chair which is located away from
the frightening toilet. Due to the great variability of sensory problems, some
children may like to repeatedly flush the toilet but they are still not
trained. The thinking of some autistic children is so concrete that the only
way they can learn is to have an adult demonstrate to them how to use the toilet.
They have to see someone else do it in order to learn. Some children with very
severe sensory processing problems are not able to accurately sense when they
need to use the bathroom. If they are calm they may be able to feel the
sensation that they need to urinate or defecate, but if they experience sensory
overload they cannot feel it. This may explain why a child will sometimes use
the toilet correctly, and other times he will not.
5. Why do some autistic children repeat
back what an adult has said or sing TV commercials?
Repeating back what has been said, or being able to sing an
entire TV commercial or children's video is called 'echolalia.' Echolalia is
actually a good sign because it indicates that the child's brain is processing
language even though he may not be understanding the
meaning of the words. These children need to learn that words are used for
communication. If a child says the word 'apple,' immediately give him an apple.
This will enable the child to associate the word 'apple' with getting a real
apple. Some autistic children use phrases from TV commercials or children's
videos in an appropriate manner in other situations. This is how they learn
language. For example, if a child says part of a breakfast cereal slogan at
breakfast, give him the cereal.
Autistic children also use echolalia to verify what has
been said. Some children have difficulty hearing hard consonant sounds such as
"d" in dog or "b" in boy. Repeating the phrase helps them
to hear it. Children who pass a pure tone hearing test can still have
difficulty hearing complex speech sounds. Children with this difficulty may
learn to read and speak by using flash cards that have both a printed word and
a picture of an object. By using these cards they learn to associate the spoken
word with the printed word and a picture. My speech therapist helped me to
learn to hear speech by lengthening hard consonant sounds. She would hold up a
ball and say "bbbb all." The hard consonant
sound of "b" was lengthened. Some autistic children learn vowel
sounds more easily than consonants.
6. How should educators and parents handle autistic
fixations on things such as lawn mowers or trains?
Fixations should be used to motivate schoolwork and
education. If a child is fixated on trains, use his interest in trains to
motivate reading or learning arithmetic. Have him read about trains or do
arithmetic problems with trains. The intense interest in trains can be used to
motivate reading. It is a mistake to take fixations away, but the child needs to
learn that there are some situations when talking about trains is not
appropriate.
The idea is to broaden the fixation into a less fixated
educational or social activity. If a child likes to spin a
penny then start playing a game with the child where you and the child take
turns playing with the penny. This also helps to teach turn taking. A
train fixation could be broadened in studying history. A high-functioning child
would be motivated to read a book about the history of the railroad. One should
build and broaden fixation into useful activities. My career in livestock
equipment design started as a fixation on cattle chutes. My high school science
teacher encouraged me to study science to learn more about my fixation.
High functioning autistic and Asperger
teenagers need mentors to help them develop their talents into a career skill.
They need somebody to teach them computer programming or graphic arts. A local
computer professional could serve as a mentor or the individual may be able to
take a programming class at a community college. Many parents wonder where they
can find a mentor for their teenager. Try posting a notice on a bulletin board
at a university computer science department or strike up a conversation with
the man in the supermarket checkout line who is wearing a badge with the name
of a computer company on it. I found one of my mentors in the business world
when I met the wife of his insurance agent.
7. What is the difference between PDD and autism?
Autism and PDD are behavioral diagnoses. At the present
time there are no medical tests for autism. Autism is diagnosed based on the
child's behavior. Both children diagnosed with autism and PDD will benefit from
education programs designed for autistics. It is essential that children
diagnosed as PDD receive the same education as children diagnosed with autism.
Both autistic and PDD children should be placed into a good early education
program immediately after diagnosis. Children diagnosed with PDD tend to fall
into two groups: (1) very mild autistic symptoms, or (2) some autistic symptoms
in a child who has other severe neurological problems. Therefore, some children
diagnosed as PDD may be almost normal; and others have severe neurological
problems such as epilepsy, microencephaly or cerebral
palsy. The problem with the autism and PDD diagnoses is that they are NOT
precise. They are based only on behavior. In the future, brain scans will be
used for precise diagnosis. Today there is no brain scan that can be used for diagnosing PDD nor autism.
8. Why is Early Intervention important?
Both scientific studies and practical experience have shown
that the prognosis is greatly improved if a child is placed into an intense,
highly structured educational program by age two or three. Autistic children perform
stereotypic behaviors such as rocking or twiddling a penny because engaging in
repetitive behaviors shuts off sounds and sights which cause confusion and/or
pain. The problems is that if the child is allowed to
shut out the world, his brain will not develop. Autistic and PDD children need
many hours of structured education to keep their brain engaged with the world.
They need to be kept interacting in a meaningful way with an adult or another
child. The worst things for a young two to five year old autistic
child is to sit alone watching TV or playing video games all day. His
brain will be shut off from the world. Autistic children need to be kept
engaged; but at the same time, a teacher must be careful to avoid sensory
overload. Children with milder sensory problems often respond well to Lovaas-type programs. However, children with more severe
sensory processing problems may experience sensory overload. There are two
major categories of children. The first type will respond well to a therapist
who is gently intrusive and pulls them out of their world. I was this type. My
speech therapist was able to "snap me out of it" by grabbing my chin
and making me pay attention. The second type of child has more neurological
problems, and they may respond poorly to a strict Lovaas
program. They will require a gentler approach. Some are 'mono-channel' because
they cannot see and hear at the same time. They either have to look at
something or they have to listen. Simultaneous looking and listening may result
in sensory overload and shutdown. This type of child may respond best when the
teacher whispers quietly in a dimly illuminated room.
A good teacher needs to tailor his/her teaching method to
the child. To be successful, the teacher has to be gently insistent. A good
teacher knows how hard to push. To be successful, the teacher has to intrude
into the autistic child's world. With some children the teacher can jerk open
their "front door;" and with other children, the teacher has to sneak
quietly in their "back door."
9. Why does my child want to wear the same clothes all the
time?
Stiff scratching clothes or wool against my skin is
sandpaper ripping off raw nerve endings. I am not able to tolerate scratching
clothes. Autistic children will be most comfortable with soft cotton against
their skin. New underwear and shirts will be more comfortable if they are
washed several times. It is often best to avoid spray starch or fabric
softeners that are placed in the dryer. Some children are allergic to them.
[Note: Caretakers and teachers should also avoid the use of perfume because
some children hate the smell and/or they are allergic to it.]
Even today at the age of 49, I have had to find good
clothes and work clothes that feel the same. It takes me up to two weeks to habituate
to the feeling of wearing a skirt. If I wear shorts during the summer, it takes
at least a week before long pants become fully tolerable. The problem is
switching back-and-forth. Switching back-and-forth can be made more tolerable
by wearing tights with skirts. The tights make the skirt feel the same as long
pants.
Continued next
page
HANDOUT #3
The Savant Syndrome:
Darold A. Treffert,
M.D.
Savant Syndrome is a
rare, but spectacular, condition in which persons with various developmental
disabilities, including Autistic Disorder, have astonishing islands of ability
or brilliance that stand in stark, markedly incongruous contrast to the
over-all handicap. In some, savant skills are remarkable simply in contrast to
the handicap (talented savants). In others, with a much rarer form of the
condition, the ability or brilliance is not only spectacular in contrast to the
handicap, but would be spectacular even if viewed in a normal person
(prodigious savant). There are fewer than 100 reported cases of prodigious
savants in the world literature. The condition was first named Idiot Savant in
1887 by Dr. J. Langdon Down (better known for having named Down's Syndrome). He chose that term because the word
"idiot" at that time was an accepted classification level of mental
retardation (IQ below 25) and the word "savant" meant knowledgeable
person derived from the french word savoir, meaning
"to know". The term idiot savant has been largely discarded now,
appropriately, because of its colloquial, pejorative connotation and has been
replaced by Savant Syndrome. Actually Idiot Savant was a misnomer since almost
all of the reported cases have occurred in persons with IQs of 40 or above. The
condition can be congenital or acquired in an otherwise normal individual
following CNS injury or disease. It occurs in males more frequently than in
females in an approximate 6:1 ratio.
Savant skills occur
within a narrow but constant range of human mental functions, generally in six
areas: calendar calculating; lightening calculating & mathematical ability;
art (drawing or sculpting); music (usually piano with perfect pitch);
mechanical abilities; and spatial skills. In some instances unusual language
abilities have been reported but those are rare. Other skills much less
frequently reported include map memorizing, visual measurement, extrasensory perception, unusual sensory discrimination such
as enhanced sense of touch & smell, and perfect appreciation passing time
without knowledge of a clock face. The most common savant skill is musical
ability. A regularly re-occurring triad of musical genius, blindness and autism
is particularly striking in the world literature on this topic. Premature birth
history is commonly reported in persons with Savant Syndrome.
In some cases of
Savant Syndrome a single special skill exists; in others there are several
skills co-existing simultaneously. The skills tend to be right hemisphere in
type--nonsymbolic, artistic, concrete, directly perceived--in contrast to left hemisphere type that
tend to be more sequential, logical, and symbolic including language
specialization.
Whatever the special
skills, they are always linked with phenomenal memory. That memory, however, is
a special type--very narrow but exceedingly deep--within its narrow confines.
Such memory is a type of "unconscious reckoning"--habit or procedural
memory--which relies on more primitive circuitry (cortico-striatal)
than higher level (cortico-limbic) cognitive or
associative memory used more commonly and regularly in normal persons.
Approximately 10% of
persons with Autistic Disorder have some savant abilities; that percentage is
much greater than in other developmental disabilities where in an
institutionalized population that figure may be as low as 1:2000. Since other
developmental disabilities are much more common than autism, however, the
actual percent of persons with Savant Syndrome turns out to be approximately
half Autistic Disorder and half other Developmental Disabilities.
Theories to explain
Savant Syndrome include eidetic imagery, inherited skills, concrete thinking
and inability to think abstractly, compensation & reinforcement, and left
brain injury with right brain compensation. Newer findings on cerebral
lateralization, and some imaging and other studies that do show left hemisphere
damage in savants, suggest that the most plausible explanation for Savant
Syndrome to be left brain damage from pre-natal, peri-natal
or post-natal CNS damage with migratory, right brain compensation, coupled with
corresponding damage to higher level, cognitive (cortico-limbic)
memory circuitry with compensatory take over of lower level, habit (cortical-striatal) memory. This accounts for the linking of
predominately right brain skills with habit memory so characteristic of Savant
Syndrome (Treffert, 1989). In talented savants,
concreteness and impaired ability to think abstractly are locked in a very
narrow band but, nevertheless, with constant practice and repetition can
produce sufficient coding so that access to some non-cognitive structure or
unconscious algorithms can be automatically attained. In
prodigious savants, some genetic factors any be operative as well, since
practice alone cannot account for the access to vast rules of music, art or
mathematics that seems innate in these persons. Once established,
intense concentration, practice, compensatory drives and reinforcement by
family, teachers and others play a major role in developing and polishing the
savant skills and memory linked so characteristically and dramatically by this
unique brain dysfunction.
One of the pre-natal
CNS injury mechanisms, which has implications not only for Savant Syndrome but
other disorders as well in which male sex in over-represented, is the neurotoxic effect of circulating testosterone on the left
hemisphere in the male fetus based on observations and reported by Geschwind and Galaburda. Since
the left brain completes its development later than the right brain, it is at
risk for CNS damage for a longer period of time to circulating-testosterone
(which can be neurotoxic) in male fetuses and that
left CNS damage, with right brain compensation, may account for the high male:female ratio not only in
Savant Syndrome, but in autism, stuttering, hyperactivity and learning
disabilities as well.
The movie Rain Man
depicted an autistic savant and that term became almost a household word. It is
important to remember, however, that not all autistic persons are savants, and
not all savants are autistic. What one sees in Rain Man are savant
skills (lightening calculating, memorization etc.) grafted on to autism
(narrowed affect, obsessive sameness, rituals etc). It is also important to
point out that the savant in the movie is a high functioning person with
autistic disorder, but the disorder consists of an entire spectrum of
disabilities ranging from profoundly disturbed to high functioning; not all
autistic savants function at such a high level.
For many years it was
feared that helping the savant achieve a higher level of functioning with
treatment--"eliminating the defect"--would result in a loss of
special skills, i.e. there would be a trade-off of right brain special skills
for left brain language acquisition, for example. That has not turned out to be
the case. Quite to the contrary, "training the talent" is a valuable
approach toward increasing socialization, language and independence. Thus the
special skills of the savant, rather than being seen a
odd, frivolous, trivial or distracting, become a useful treatment tool as a
conduit toward normalization in these special persons. Some schools have begun
to include persons with Savant Syndrome into classes for the gifted and
talented as a method of enhancing further this conduit toward normalization.
There are probably
fewer than 25 prodigious savants living at the present time. Some of those
include Leslie Lemke (music), Alonzo Clemens (sculpting), Richard Wawro (painting), Stephen Wiltshire (drawing), Tony DeBlois (music) to name some. Other prodigious savants more
recently described are in