Autism, a personal story and case history.
By ralph klimek, June 2007
this article may be reused, quoted whole or in part, for any bona-fide
educational, medical research or journalistic purpose
Much has been written about this medical condition known as Autism
Spectrum Disorder. I will not attempt to reproduce any of it here,
there is more than enough already. It is a condition with a spectrum of
disability from allmost vegetative to highly functional individuals
with socialization difficulties. This case history that I present here
concerns my third child. My target audience is any parent who finds
themselves with a pediatricians' diagnosis of Autism Spectrum Disorder
who may be interested in reading other parents' experiences and
I regret that I cannot offer much comfort. There are a myriad of
reasons that can cause the brain to be deficient in neural pathways or
missing or stunted organelles that result in the global "ASD"
condition. Sometimes there are genetic or abnormal chromosomal
indicators that result in metabolic pathways being broken, but these
conditions are also associated with other severe medical problems as
well. The condition manifests itself in many differant ways, ASD is not
a specific illness as you would consider rabies, the plague or say,
trauma. If there are no chromosomal indicators then there is no
specific cause. It wasnt anything you ate or failed to eat in the first
trimester, mobile phone radiation or even MMR vaccine , one of the many
emotional crutches that angry parents who feel the overwhelming need to
"blame" something will cling to.
Are there familial indicators of mental problems? Yes there are, and
without going into detail to sheild the good name of the living there
is dyslexia, chronic depression , OCD and on the positive side there is
extraordinary precociousness and mostly just plain old normality.
There is no cure.
There is treatment and management and love.
My third child, a beautiful boy, was born normally in good condition.
Gained weight as a healthy child should, met the early milestones, was
on his feet and toddling around the house at 12 months. He was as
apprently mentally normal for one year of age. His elder brother had
already and precociously started speaking at one year and we were
eagerly awaiting what the new arrival would have to say. By
eighteen months he was making the normal toddlers attempts at speech.
At two years, there was still no real advancement in speech. We still
did not panic at this point because he was still behaving as a normal
two years does. He was then and still is very independent. As soon as
he could walk he would help himself to food that was within in his
reach and he would explore the kitchen cupboards looking for food
opening containers if required. At two years, if he felt tired, he
would lay himself down in a quiet corner after seeking and grabbing his
favorite pillow. Sometimes I would find him outside on the grass
snoozing on his favorite pillow, he would sleep when and where it
pleased him to do so. Normal karyotype, no metabolic
He was never a "difficult" child, easily pacified, and when he was
inconsolable for some reason he went to his elder sister for comfort.
They have a special bond, often his sister could comfort him when we,
his parents, could do nothing.
So he progressed to three years of age. We were becoming just a bit
concerned now. He was missing some developmental milestones. In
particular his early beginnings with speech had completely vanished. He
was completely without any directed voluntary speech and spoken
language to him had no meaning. Physically he had developed completely
normally,was agile, exhibited intelligence in the sense that he could
navigate his surroundings, open locks, containers and would look after
his little toys. He was extremely orderly and would , even at three,
tidy beds and straighten crooked tea towels. He would be offended if
his things were out of place. He did not play normally, the play was
very simplistic and appeared to consist of endless rituals of
arrangeing objects in very fixed patterns. If I emptied his toy
box and invited him to play, his idea of playing was to return every
item to the box in precisely the order and position it had
Socially, he accepted the effection of those around him and was
distressed when he was ostracised by his siblings. He reacted very
badly if we were displeased with him and had to learn how to chastise
or correct him in a very mild way. We were extremely fortuneate that he
did not exhibit any so called challeging behaviours and we could go out
in public without incident or embarrassement.
When he turned three we were referred to a pediatrician with our
concerns. At this point in his life there was no functional voluntary
speach or verbal understanding. He made a handfull of sounds from which
we learned to infer his needs. If he wanted something he would point,
not with his hands, but would take our hand and point with that,
sometimes guiding our hand to the object he wanted or guiding us in the
action that he wanted us to perform. His reaction to things not going
his way was to hurl himself on to the floor, this is a characteristic
behaviour which will gradually stop as he acquires basic life
skills. He had a deep memory. He never forgot where his favorite
objects were. He had parrot speech, the pediatricians call it
echolalia. He had a very deep memory. He had the very autistic ability
to watch a movie and then quietly sit in his favorite corner and
repeat maybe an hours worth of the movie soundtrack complete with
orchestral and sound effects. Even the actors' accents
could be distinguished. But there was clearly no understanding or
intelligence in what he was saying or rather reproducing. It was one of
his most charming behaviours, and he learned that it could earn him a
reward. At this stage we had no success with toilet training. Loud
noises would distress him, he was particularly afraid of motorised
tools and appliances.
After the second consultation with the pediatrician which also involved
prolonged observation he was immediately placed in a Special
Development School. We were extremely fortuneate because at this
instant there was no waiting list. The medical rationale for this very
early interventation is this. The young brain is very "plastic". There
is a huge amount of neural growth and growth in neural complexity. This
is the age when the most fundamental of mental skills are developed and
the simple medical consensus is that by age seven, these most
fundamental skills must be inplace or they are never properly acquired.
The management and intervention philosophy of the SD Schools is
attempting to salvage whatever skills and mental develpmental potential
they can. It makes perfect sense. The school program is very intensive
and I think they do a wonderfull job. They dont mess about and do what is required, always in the most gentle and humane way.
By the age of four, this child was still showing no signs of functional
speech. His play pattern was still abnormal. He was extremely echolalic
and exhibited astonishing feats of deep auditory memory. He favorite
movie was "The Sound of Music", he had memorised not only all the
twelve or so songs but nearly all the dialogue as well. We were treated
by him to endless replays of baron von trapp and his rich fiance in the
most serious dialogue about love and social standing, the dramatic
pauses and accents and emphasis were worthy of someone who had been
attending acting academy for several years. But sadly, it was nothing
but an echo, a recording, it was something he could do and sometimes
get a sweet for. The songs were pitch perfect, and sometimes repeated
incessantly. We tried to interest him with the piano and invite him to
play with it, but sadly has never shown any interest in it. He exhibits
more deep memory, this time of space. His mother forgets where in the
huge mall carpark she had left her car, but this child will lead her to
it without fail. He is extremely distressed by certain harmless objects
and sounds. He cannot abide the sound of my power tools and is
terrified of the vacuum cleaner. Yet he helps me push my petrol driven
lawn mower. By now we had an official medical diagnosis of Austism
Spectrum Disorder and rated moderate to severe on their scale.
At five years of age, and very suddenly, he takes to the toilet and
manages the whole business for himself. He is very fastidious and takes
great pride in his ability to toilet himself. This could be a response
to his little classmates, many or whom are more severely disabled and
will never be able to handle this critical skill themselves. Can you
imagine our relief ? After three children over a span of ten years I
had been up to my elbows in nappies. We were free, in a very palpable
sense. By now, there are maybe a dozen real words he uses to indicate
his needs. Once or twice he melts my heart with a clearly enunciated
"Hi Dad!" when I arrive home after work. Cannot use or construct
sentences but very suprisingly will borrow pieces of dialogue from a
movie he had memorised in a similar context. So for example when he
wanted my immediate attention he would declaim , in a beautiful
Scottish brogue " Harry Potter....(pause)...come here !! " (Professor
McGonnagle). At this age he shows considerable interest in computer
games, watching me or his older brother. He learns to drive the games
very rapidly, provided that there is no verbal or reading cues required he will
complete an entire game of something like Rayman or Harry Potter or
Shrek. This includes plugging in the power, throwing circuit breakers,
inserting the correct CD. logging on with password and clicking icons
on differant computers ( we are a family of nerds ) each with differant
procedures. To see it is to believe it. We take him skating and he
becomes confident on skates after three sessions.
Now at six or seven years we begin slowly to understand the nature of
his affliction. ASD deletes particular mental abilities and leaves
others unaffected or even enhanced. In the medical literature, there are descriptions of
autopsied autistic brains. The common feature is that particular brain
organelles are either missing or degenerate , or neural bundles ,
missing or attrophied. It is not global in scope but affects some
particular piece of brain anatomy. My personal observation of my
little boy now that he is nine, his voluntary meaningfull speech is
beginning to emerge, but, it is similar in some ways to the broken
speech of stroke victims that I have known. Sometimes he appears and
plays and acts allmost normally, and we think, hope...perhaps he will
"snap out of it". We are , off course, always frustrated in that hope,
the glimmer of "normality" was just that, a mere hint of the boy he
might have been. We go to the Australian gold coast for a holiday to
Sea World. There is a merry-go-round, a beautifull and harmless ride.
He is terrified and throws a tantrum. The ride is stopped and he is
removed. He quickly regains his composure and watches his siblings
enjoying "the tower of terror" , A high ride up a columnb, on which you
haul yourself up on a servo assisted rope and then drop rapidly.
He watches his siblings with big longing eyes. "No way" , we say, not
after the merry-go-round incident. I then have an inspiration and then
a terrible public fight with his mother. I would go up with him. I won
this minor battle of wills (probably the only time) and we spent nearly
the next hour going up and down at his insistence. This is ASD, a
harmless merry-go-round throws him into a hysterical panic but a plunge
down 30 meters merely thrills him. After that he prooves his mettle by
riding roller coasters with me.
Now I talk about years six, seven and eight. Time moves on, the days
months and years begin to blur and merge into a grey continuum.
He is progressing well at Special School. Sadly he is assessed with a
very low, sub normal IQ. In a way, just as well, because you "flunk"
special school by scoring too high! (and out you go, to normal school)
He enjoys his school, he never displays anxiety about school and
he happily puts himself on to the school bus in the morning. He can
answere with yes or no simple questions about his day or his needs or
even questions such as " is this object green" . He learns to write his
name, letters and numbers and is always willing to show off his skill.
At eight years he shows us unambiguous evidence that he "gets" the
purpose reading. The story is worth repeating. It comes up to his
eighth birthday. At the school they always make a little fuss and
class party for the birthday occasion. His mother packs lolly bags to
be shared with his classmates and puts the name labels on them. He
walks into the kitchen, notices the 10 or so lolly bags. He is
attracted to sets of similar objects as playthings, takes the lolly
bags and adjourns to his favorite corner. He then begins to arrange
the bags. His mother confiscates the bags, he grabs them back and
arranges them again. I watch, but do not intervene. Then we notice that
the bags , which are identical with the exeption of the name tags, are
arranged in the identical way. One bag is removed by him and placed in
an adjacent room. We ask , "why is Zoes bag in the other room". He
replies in his broken speech " Zoe not in class" . It was true, "Zoe"
is not in his class, the arrangement of the lolly bags was the seating
order in his classroom. We were beside ourselves with joy, we not only
got a meaningfull answere to a spoken question but there was real
evidence of a rudimentry reading ability. We test it, and he correctly
reads out the name tags. We quietly rejoice.
Now he is nine. His verbal agility is slowly growing in strength.
He can answere yes no questions and questions that can be answered with
one word. He is still very fastidious, he makes his own food, instant
noodles and sandwiches. He is extremely neat. As his verbal skill
grows, the amazing echolalia diminishes, and sadly, he will no longer
sing. Apparently thats meant to happen. He loves his computer games.
When his brother lets him play Grand Theft Auto, he takes particular
care to obey road rules. He actually stops at red lights and for
pedestrians, otherwise he enjoys picking fights with the police!
(please note, this is not the example we are trying to set here ,
GTA3 is certainly not an educational software!) We still cannot
interest him with the piano. He begins to play constructively with
Lego. He knows and uses maybe one hundred words and can read some
simple words on demand. He demands that I take him for a daily walk, we
are blessed with good parks and bike tracks and he will walk for ten
kilometers without complaining. I am debating with myself if I should
teach him the use of the bicycle. He is physically capable and has the
balance and coordination but I am concerned about his sense of traffic
and sense of danger. Its about control, I feel that I cannot be in
sufficient control of him on a bicycle. He is no longer terrified of
the vacuum cleaner and will now take it for a spin to show off how
brave he is.
He shows us more often that he gets the idea of reading. He takes his
collection of Disney books and reads to us the titles. He likes to copy
words on to his magna doodle and when he wants to show off his skill he
will write the names of his classmates. I think his class teacher gets
him to assist the slower kids to write their names.
There is one neural function indicator that is interesting. He lacks a
normal tickle response. If you tickle the soles of his feet there
is allmost no reaction. He does derive considerable pleasure, however,
and when younger, would indicate to us that he would like his feet
tickled, and now that he has some power of speech will sit by me and
ask me to "tickle foot" . One may not tickle other parts of his body,
he interprets this as aggression and is distressed.
These days he will invite me to sit beside him to watch his favorite
movie with him. Now he gives me a running commentary on the movie with
one or two word comments. He can drive the half dozen
assorted remote controls with competence, he was not taught this, he
acquires these skills by watching other people and trying things out.
He will ask for help as required.
Now he is about to turn eleven. His power of speech grows fitfally
from year to year. It is still not possible to converse or give advice
, explanations or direction. Remarkably, and thanks to the amazing
staff at Special School he can read and get meaning from what he reads.
He can write ! He finds it easier to write his requests on
his magna-doodle (than to ask verbally), proudly show us the written
request and await approval. We allways approve, how could we not
? It is too good to be true. One of the requests is for permission to
watch his favourite movie, again. It is the Titanic. He has
memorised the dialog, all of it. You would too if you had seen it 100
Well, where too from here ? It is unlikely that he will speak as we do,
but maybe just enough to get through life. He has good to excellent
memory, spatial and visual intelligence. He can do "anything" provided
it can be demonstrated. He is lost if something requires a verbal
explanation. He is capable of independent action, is physically
competent, is aware of his surroundings and the feelings of those
around him. He chooses his friends, is sensitive to slights and
reproaches. I am not confident that he can have an truly independent
life and am resigned to always have a dependent child as long as I yet
live. We have been blessed with an happy, orderly and placid child and
I can honestly say, is not a burden.
There are too many other parents
at his special school whose life has become a nightmare , and so, I
will not describe my lot as a burden.
Who knows what time may bring.
At six years old
playing a Harry Potter game at the PC
Playing playing chess with himself