For other writeups about my son, see Growing up with Autism and Growing up with Autism 2
forward several dozen years. It is 2004, 9/11 is an all too recent
memory, my wife and I decide in a moment of madness to take my son
who has extreme Autism on a trip to America. Mainly because he didn't
want to be left behind and we couldn't think of what else to do. The
in-laws were clamoring for a visit and we hadn't yet reached the
point of telling them all to go jump.
son was thirteen at this time,, a very dangerous age for people with
autism but we didn't realize it then. We were relieved that he had
stopped 'stimming' in public- that's short for self-stimulating
behavior that Autists use to narcotize their sensory overload. With
my son one form it took was flushing a toilet wherever he happened to
be, over and over to watch the water circle around as it drained.
Try it sometime, it's very calming.
the time we took the trip it was mainly videos. The same half dozen
or so, over and over and over. We bought him a portable DVD player
and a set of earphones and figured, problem solved. And it did seem
to work; we even survived a seven hour layover at Adams Air Force
base (don't ask). The relatives also coped fairly well. Of course we
had to endure the whispered asides, like, 'I think you are very
brave, both of you.' or ' How are you ever going to have a life?' Or
my all time favorite, ' Don't you know there are places for people
yes, we knew. Places where he would be bullied, sexually abused and
shot full of drugs to keep him docile. It would be nice to think that
the staff at such places take a low paying job dealing with very
challenging individuals who have suffered the trauma of being
forcefully removed from their families, solely motivated by feelings
of Christian charity; but as Sportin' Life says in 'Porgy and Bess,
'It ain't necessarily so.'
thing that really upset everyone was my son's reaction if he was told
he had to do something, or stop doing it. The technical term is
'Pathological Demand Avoidance' , or PDA. Have you ever noticed the
soothing effect it has on some professionals when they've coined a
cute little acronym for something? I don't suppose it ever occurs to
such people that there is usually a rationale for the way people
behave, reasons that make perfect sense to the person within their
own frame of reference. It's a little different from the way that
having leprosy makes your nose fall off.
if you will that you are a teenager with very poor language skills,
constantly bombarded by sensory stimuli that you are unable to screen
or suppress and therefore constantly on the edge of losing your
temper at what seem to you to be incomprehensible demands to do this
or stop doing that. Imagine for instance that at home you love
jumping off a six foot bank into the river that runs behind your
house, but now some adult you never saw before tells you that you
can't jump into his backyard swimming pool because he is afraid you
will hurt yourself, in spite of the fact that you are a perfect
physical specimen whose co-ordination and reflexes are off the chart.
What would you do? It doesn't help that you are entirely lacking in
empathy or social skills.
were many such moments, some of which we knew how to cope with, but
at times there would be the inevitable 'melt down' – that's
Autistspeak for what you might call a total loss of cool. We had
learned how to cope with such moments, the worse part of which , to
be honest, were the comments of the people around us. 'If that was my
child, I'd kill myself, ' whispered one woman when my son aged ten
roared defiance from the top of the playground slide when told it was
time to go home.
might mention that my son's all time favorite movie was 'King Kong.'
He had all the versions, even the Japanese one with subtitles. Wonder
we were on our way home, tired and stressed, all of us, passing
through Airport Security in Atlanta, and I forgot to tell my son that
he had to remove his backpack as well as his shoes. I was forcibly
reminded of my lapse when I heard a stern Southern American voice
say, 'You'll have to remove your backpack, sir,'
turned around and my heart sank. There was my thirteen year old son,
both fists tightly clenched around the shoulder straps of his
knapsack, shouting 'No!' Didn't this large person know that he had
the 1930 remastered version of his beloved 'King Kong' in there?
Standing over him was a six foot four Marine in tan fatigues that
strained at the shoulders, probably bored out of his skull with
checking handbags and such, facing an agitated individual clutching a
knapsack that probably contained enough gawddam semptex to blow the
whole airport sky high.
a fine disregard for his personal safety, the Marine hustled my son
and his deadly knapsack into a reinforced perspex booth while he and
an equally fearless, equally large compatriot tried to get him to
extend his arms so they could run a portable metal detector or
something over him. My son was terrified at this point and I managed
to insinuate myself into the plastic cage alternately pleading with
him to raise his arms like daddy was doing, and trying to explain to
the Marines that my son was Autistic. Neither of them showed the
least sign of comprehension, although several people in the queue
obviously knew the word. The Marines, to give them credit, probably
thought it was the name of one of those new Muslim religious groups.
What my son was thinking I have no idea, probably something along the
lines of ' Put the girl down and climb down off that building so we
can shoot you, you stinking ape.'
managed to extricate ourselves and board the plane, only to have a
sharp voiced Stewardess ask my son if he knew how to operate the
emergency exit next to his seat. Of course by now any speech he
might have remembered had totally left him, so we had the unenviable
task of trying to persuade him to move to another seat. I offered to
take his place, certain that I could figure out the mechanism at some
point when we were over the Atlantic and the officious bitch was
standing alongside, but by now our whole family was under suspicion
and we had to move en masse to a less sensitive area of the plane.
was our American holiday. Some of it was good for amusing stories to
be told to people back home who knew my son, but the long range
consequences were not slow in coming . It began with my son's refusal
one morning to attend the Special School where he had, until then,
been more or less happily enrolled. Gradually the absences became
more and more frequent until after a few months he flatly refused
even to get out of bed. He stopped talking and responding. We tried,
I grieve to say, to remove his videos and television as a punishment,
to no avail.
six years after that he remained cloistered in his room, emerging
only at mealtimes, speaking seldom if at all. He was awarded a Carer,
a patient and iron willed Swedish lady who sat by his bed twice a
week and read him the 'Harry Potter' books , all seven of them three
times over. He never looked at her or responded, but seemed to enjoy
her coming. Then, slowly, he emerged. He ventured out for the first
time to feed the chickens, then out to the barn to use the swing we
had installed there. When an opportunity came to buy the house next
to ours, we bankrupted ourselves to do so, and renovated it into a
permanent residence just for him.
learned later that this kind of regression is fairly common for boys
with Autism during the admittedly stressful period of puberty. On the
other hand, look at it from my son's point of view. He had been
praised, nurtured and rewarded for everything he did at his school.
He lived in a world that was predictable and stable, and when things
were unpleasant he could always immerse himself in his videos.
Suddenly and for no discernible reason he was plunged into a world
where he was feared, disliked, and treated like a freak. It was all
too obvious to him that he had neither the language skills or the
understanding to cope with the endless parade of individuals who
talked too fast, made incomprehensible demands and were surrounded by
unpleasant levels of noise. Did he realize that this was the real
world and it was everywhere outside the safe nurturing atmosphere
that he had assumed represented reality? I think so. This was the
world that waited for him, as for all those like him, as soon as he
passed the magic age of 16. A world where he had no function and no
place, where he would be tolerated at best, especially if he could do
tricks, like adding up the numbers in a phone book. Sadly my son has
no such ability. The fact that he can catch a ball thrown to him one
handed every time probably doesn't qualify.