A Life With Asperger’s Syndrome. A speech written and delivered
by Stan Hood at the University of Canterbury, Christchurch, New Zealand, Oct
2009. COPYRIGHT?
You may use this document freely but please acknowledge authorship and the fact
you retrieved this documentfrom
asknz.net,the ASK Trust website. signed: S.W.Hood,
2014).
I am Stan Hood, 64 years old.This is my first year at the university of Canterbury and
I am aiming at a BA, psychology major.
My working life has been in electronics
hardware and electro-mechanical goods in commercial and industrial
environments, being involved in design, construction, installation, adjustment,
maintenance, and repair of this kind of equipment.
.
I also had electronics as a hobby interest.
Years before the terms geek, or nerd had been invented, I was a very good
example of one.Not much else interested
me as work or hobby other than radio and electronics, apart from an ongoing
curiosity about why I was different to other people.This difference was both my perception as
well as the perception of my peers and my school teachers, as evidenced by
their slightly different way of inter-acting with me.
.
My mother used to say I was “highly
strung”.It is true that I was a nervous
child even though I did not want to be. I suppose this was the nearest assessment one
could make of my demeanour in those decades before the work of Hans Asperger
was introduced to the English-speaking world in the 1980s with the translation
of his works from German.
My own diagnosis of Asperger’s syndrome
occurred a little over a year ago.It
was made by one of the professional people I chose from a small list of names
given me by a counsellor at Autism New Zealand. Mostly, Asperger’s syndrome
is said to be on the autism spectrum.Asperger’s syndrome is also sometimes known as high-functioning autism.
.
What a relief it was to at last discover
what I was.All my life I had the sense
of being born on the wrong planet.I
never could understand much of the meaningless banter of ordinary social
intercourse.I just assumed when I was
young that everybody was having just as tough a job as me to figure out what
the purpose of this meaningless social babble was.Too often I would take the words literally,
and then I would wonder why, further down the track, a former friend might
become hostile, or, I might not be invited to be in certain playground groups.
.
As a child I thought I was a normal human,
but recognized that other kids had some amazing power to help them cope with
the perceived almost insurmountable difficulties of common social situations.
Aspies may not understand the social
niceties, but neither are we dimwitted.The typical Aspie is said to be of above average intelligence.
.
Some Aspies have difficulties with
speech.Possibly dyslexia, stammering I
understand is not uncommon. I stammered
very badly for much of my childhood.The
corollary of speech is hearing: in my childhood I also had difficulties with
hearing while at the same time I was able to pass simple though formal medical
tests for hearing ability.
.
And so it was, in Primer 2 at school, about
six years old, I began to be taught the alphabet and to learn some simple
words.I cannot tell you what sounds I
truly made, but I swear that I repeated exactly what I heard the teacher say to
me when she wanted my individual response right afterwards.But whenever I repeated the sound, my
classmates would laugh, and the teacher would hit me hard across the knuckles
with a wooden ruler.This painful
exercise would be repeated several times.
.
I felt crushed.I was being punished for trying as hard as I
could, and I still remember it really hurt.Eventually, without telling mum, I would hide under the bed instead of
going to school.
When the headmaster came around looking for
me, mum used her magical powers of motherhood to find my hiding place
immediately.
.
The headmaster heard my tearful explanation
that I didn’t want to go to school because I was always getting hit with a
ruler because I couldn’t say some letters of the alphabet. He threatened to
take me to school by force and give me the biggest thrashing of my life.For a second there I remember being in
absolute terror, absolutely cornered, unable to run because of my mother’s grip
on my arm, and facing a hiding at school with a leather strap, to be followed
by an impossible situation with the wooden ruler in the classroom.
.
Thank God for an understanding mother.Nobody threatened her nervous little boy and
got away with it.I can still remember
my great sense of relief when she took my side, and I stood there and watched
her go to work on the headmaster on my behalf.By the time she had finished with him, he was a nervous wreck.I did go back to school with him, in his
car.All the way there he was extremely
kindly.I was put in a different
classroom with a kindhearted teacher.Then
they got rid of that crabby teacher.
.
Some time later, I was enrolled in a speech
clinic, one-on-one coaching, half hour a week for three years.By the time I was 12 years old I was the best
speaker in class, even though I did not like speaking in front of people.
I remain to this day intrigued, that my
child brain heard the sounds I made, the same as sounds I heard others make,
but everybody else heard them as different sounds.
.
A few years went by from my six-year-old
moment of terror.I would say I wasn’t
doing too badly, socially.I had one or
two budding geek friends who found out that I was reading all of the science
books in the children’s library.Aside
from C.S.Lewis’ new books, “The Chronicles of Narnia”, it was science books all
the way for me.I also didn’t like
sports, couldn’t see any sense in it.
.
I had noticed that I was not good at
negotiating playground deals for myself, such as a little bartering with toys, marbles,
trinkets or sweets.That sort of stuff
went on all the time at my school.I had
learned that I could not handle the perceived extremely high stress levels of
the normal social inter-actions of such a negotiation.
.
At the age of about 10 or 11, I found
myself engaged in one of these negotiations, and I remember realizing that a),
I had not been so good at this sort of thing in the past, and b), this time I
would, by rote, say all the usual words of the negotiating process which I had
by then learned and see if I could successfully haggle over a deal “just like
the other boys did all the time”.So we
did our banter, and my levels of panic were getting higher and higher all the
time, and just when I knew I would have to stop and physically run from this
terrifying experience of haggling, the other boy suddenly smiled, said “OK” in
a perfectly relaxed friendly tone, and walked away apparently satisfied.And I just stood there for a minute, quietly
wondering how other children, all the time, did this sort of thing and could
stay so calm.I thought then that I
would find the answer in maybe a year, maybe two or three, certainly before I
grew up.Kids are aware that there are
some things they don’t understand yet, but they will when they get big.That never happened with me.You don’t cure Asperger’s syndrome, whether
it is identified as such or not:You
have to manage it, even if you don’t know that “it” was to be given a name only
several decades hence.Managing
Asperger’s syndrome is a job for life.
.
Asperger’s syndrome doesn’t go away, no
matter the nights you silently weep alone in your bed as you slowly grow
through adolescence, into young adulthood, and you still can’t make any sense
of the social rituals, and more importantly for the young, there is the major
matter of wooing, and winning a partner for life.
.
I can only relate the male side of
this.I learned some words and
appropriate actions from some of my friends for attracting a female.Do you know that by intellectually following
that advice, that one may obtain a whole raft of ratings from doing the same
ritual, repeated for different women? - Too fast, too slow, too boring, too
creepy…However, any possible offensive
or inappropriate words were not deliberate, it was simply the social blindness
of this Aspie.
.
Then there was the time, I was about 16, I
punched a boy during morning assembly at school because he would not stop his
whispered insulting remarks, every morning without fail.Every morning I would try to ignore him,
because I did not know how else to resolve the matter.Then I would ask him very politely if he
would stop doing that, please.Of course
he ignored my polite requests.Six
months went by, before I allowed my increasing frustration to boil over. Then I
knew that no matter what, this was the day he was going to stop annoying me.I really meant to hurt him.At the time I hoped I had.
.
Please be aware, the shy introverted Aspie
will build up pressure until it can explode into a perceived over-reaction,
which the Aspie at least will find devastating to have been forced into (in his
perception).
I found out when I was 19 years old and in my
first job, that an adult male social group still had some similar expectations
of how males should be made to react with each other.Introversion and shyness are apparently not
allowed.I still can’t figure out why.Male aggression distresses me.In a civilized human group, I have never
understood why this apparently insatiable need to select a “top dog” by male
aggressive behaviour.And, to change
metaphors, I likewise did not care nor understand any need for placing members
of a human social group at different heights on the totem pole of hierarchy.
.
I have learned a couple of little snippets
of information in my first year psychology courses:psychologists assess mental states by
observing behaviour patterns, and people on the autism spectrum lack a desire
for social intercourse.
.
If you want to take anything from my words
today, please take this.I believe you
will find that people on the autism spectrum, especially adolescents and young
adults, very strongly desire social acceptance, and social inter-action.Never mind what the peer-reviewed academic
word says. Behavioural evidence based on
our all too common wooden lack of physical responses, coupled with our hesitant
or stammering way of verbal communication, may incorrectly be assessed by
psychologists as a lack of desire, when the truth as I know it from long
experience is, the lack is in the ability to perform the positive-looking
neurotypical behaviour in the social context
.
I know that at least some young Aspie males
yearn for that ability for easy social inter-action.Please be prepared to assess lack of
observable behaviour in this regard as an inability, not a lack of will to
engage. The desire is there, the means
to display it is malfunctioning.
If you see passion in me today, it is because I was
absolutely determined to find some ways of understanding my world, after the
breakup of my first marriage.I meant
those marriage vows, until death do us part.And it hurt, very badly, when it ended.
.
I felt shattered, inadequate,
worthless.I had to do something to
prove to myself that I was as good as anybody else.So I went out and did the most terrifying
things in the world.I wasn’t going to stop
trying until I had succeeded in public speaking, and I did, in time.I wasn’t going to stop trying until I had
gone on stage, the spotlight on me as a leading actor, and singing solo. This
took me a little more time, but I did it.
And so I discovered, in a public forum,
even an Aspie can learn to hide behind a public persona.
.
But that is by way of explanation of how I
am managing today.It is not entirely
relevant to the young people, and adults in their 20s (the folks whom everybody
here today will mostly be dealing with), who may go to bed, alone in the world,
and shed silent tears of frustration in their utter misery of a cruel world
which they don’t understand, and which does not understand them.
.
When I went out into the world as a young
man, gentle and passive, intelligent, caring, loving but socially inept, I
would easily have my feelings hurt.I
misunderstood innocent social banter as literal conversation.I
still have that problem, but I make better guesses at it now.
So please, no banter with Aspies, be
literal.You will then be understood,
and quietly appreciated.
.
Aspies can appear blunt with their
conversations, even terse or aggressive-sounding. This is almost certainly due to the Aspie’s
nervousness at speaking to a being whose social rituals he does not understand.
Perhaps, like me, some Aspies may have
some inability to assess how they sound like and thus cannot modulate their voice
appropriately.I think my inability for
this is erratic, but am not sure.
.
Please try not to respond to a
terse-sounding Aspie in kind.The next
one you speak to in kind could be me, and I would not have meant any offensive
tone beforehand.
.
My opinion is however that you do not have
to handle the Aspie with kid gloves.Just
be literal, you don’t have to talk in the deliberately over-the-top joyous
tones one may use for a small child in order to prevent fear.Remember the Aspie is typically of above
average intelligence so being obviously spoken down to, won’t be appreciated.
.
If you come across a young Aspie who
appears to be gay because of a perceived passive or subservient body language, perhaps
combined with a soft, hesitant or higher-pitched voice, don’t be too hasty in
your assumption.I displayed all of
those characteristics for decades and I have always been straight. It just so happens, I really am a gentle
person who takes people as they come, I live and let live.The higher pitch of the voice is probably due
to excessive nervousness.
.
An Aspie may appear shifty or
untrustworthy, because he does not like to make eye contact with you.He may also turn away from you because he is
shy or has developed an inferiority complex.Be gentle with the poor innocent guy.
.
Eccentricity:if you find an Aspie, especially a young
Aspie, who indulges in eccentric behaviour or dress code, it probably isn’t an
attention-getting technique.Indeed, the
opposite: a young Aspie like I was will be diverting attention from himself, to
a physical prop.This immediately puts
the Aspie in control of what, about himself,the neurotypical tormenter would otherwise be drawn to.Thanks to the deliberate eccentricity, the
Aspie’s social inabilities are no longer noticed and they do not become sources
of torment.Eccentricity is a tool I enthusiastically
embraced in my youth.It helped.
Eccentricity is probably not an indicator
of Asperger’s syndrome.It is a tool I
accidentally stumbled across.
.
Finally, is Asperger syndrome simply a
personality type?I have heard that
suggestion made.And I say, call it what
you will, it has been in my life forever, it won’t go away, it has taken me
through the utmost despair, the embarrassments of mistaken assumptions and I
have had to manage it without external help, indeed I had never heard of a name
for it, for almost all of my life.I
don’t care what anybody calls it or where anybody places it in the whole human
spectrum of conditions.Some of us have
it.You have no idea how fantastic it is
to get a little help now and again.