But not entirely of it.
I am one step removed and curled,
The switch just doesn’t click.
I perform the role of my perception,
Life is like a video,
However, my focused use of time and space,
|This presentation is based upon my experience
and understanding of Autism Spectrum Disorder. I was diagnosed with Asperger’s
Syndrome (AS) in August 1994. Many professionals today believe AS is part
of the autism continuum. It appears to fit at the far end of the spectrum
with individuals of mostly average intelligence. According to the DSM1V
(1994) Asperger's Syndrome may be diagnosed when all the typical signs
of Autism are present, but the individual has normal language development.
However, we do demonstrate the same kind of behaviour patterns as other
autistics. For example, we dislike change (we prefer routine); we tend
to be obsessive; we become anxious very easily; we take what is said to
us literally (For example: train driver says "Can I see your ticket?" "No"
says the boy. "It's in my pocket"). This presentation aims to explore ASD
cognitive processes to help others understand us better.
I believe that as a general rule, misunderstanding between individuals with ASD and those with a Neuro-typical disposition can be the result of the differing way we encounter and process life experiences. I will attempt to explore this idea by explaining the following concepts:
|ASD Cognitive processes
Theory of mind (empathy lacks & empathy gaps)
Twiddle dee and twiddle dum,
Which of these I know so well,
They call the movie ‘Life’ you see,
I thought I’d got it,
|Before I received a diagnosis of ASD I
thought that my difficulties in every day life were because I was not as
intelligent as other people. The only way that I could cope with my daily
confusion and frustration was by living according to my rules, rituals
and routines. If someone projected into my thinking or conversation I felt
almost violated! "How dare they interrupt my space and distract me from
my course. Didn’t they understand that now I would have to start over again,
recapture my thoughts or plans and schedule it all again!" Well, actually
Wendy…No, they did not. You see…people talk to each other quite often.
They don’t need to put their thoughts on hold to do this, or even take
time to go back to the beginning of their sequence of events after the
conversation finishes. They can move from one thing to the other….most
of the time.
According to the Heinemann Australian Dictionary, to be literal means: 'corresponding exactly to the original' or in other words, 'to have, give or represent a literal translation…' '…accurate, exact' …'matter-of-fact'.
What Does This Mean?
It has been said that those who gain a sense of control over their lives and destiny live longer and healthier lives (Bitsika, 1999). For individuals with ASD the lack of understanding and, therefore, control over our environmental outcomes, causes much frustration and manipulation of others. [NTs use language to manipulate each other’s interest systems – without that linguistic skill any human being must find other ways of "manipulating" others: having other people’s interests alligned with one’s own is a fundamental survival skill…note by DM] The need to manipulate others appears to be born from a desperate need to regain control and preserve dignity, self-esteem and independence (Bitsika, 1999).
All individuals with ASD may process stimuli differently to neuro-typical individuals. In every day situations where communication is part of the interaction with another person, the individual with ASD many not interpret the situation in the same way as a neuro-typical person might. In fact they may not appreciate the situation in the same way as a neuro-typical person at all. They may take what is said to them literally and this can be a recipe for disaster.
I was visiting with the dentist recently and, whilst waiting for the dentist, I had a very interesting conversation with the receptionist. "…what have you got on today"? said the receptionist. "…uh",,,I said, whilst looking down at the clothes I was wearing and trying to think of words that would describe my attire. "…Longs, a T-shirt and sandals", I eventually replied. The receptionist looked at me and smiled. That was almost the end of our conversation. Then I asked her "…what have you got on today?" "…Oh, I'm working all day today". I wondered what her answer had to do with my question. I just looked at her and was wondering what I should say next when she said "…well, what ever you have on today I hope that you have a good day". At this point the dentist arrived and our conversation ceased. I knew something about our conversation seemed uncomfortable and I explored the conversation in my mind (as the dentist forested around inside of my mouth). When I got home I shared my experience with my family. "The receptionist was not referring to your clothes at all, she meant "what do you have on your program for the day". Mum said. I took the receptionist’s words literally. Oh well, chalk another one up to experience!
I’ll give you a few more examples.
Tracey Goes To Camp
The year seven’s had enjoyed their first camp together and now, as they sat relaxing around the camp fire, Linda, the Physical Education Teacher began to play her guitar. Kim produced an enormous bar of Cadbury’s chocolate. As it passed between each camper, participants broke off pieces of the chocolate and passed it on. Eventually the decreasing bar of chocolate reached Tracy. Tracy, a young twelve year old with Asperger’s Syndrome received the chocolate, held it in her hands and looked down at it. There was silence over the rest of the group as they watched Tracy and waited. It seemed like an eternity, but finally Jane broke the silence. "You can’t have the chocolate Tracy." She said. Tracy looked up "…yes I can!" She exclaimed. Jane reached over to take the chocolate away from Tracy. Tracy jumped up and began to run away. Half a dozen members of the group chased Tracy for almost 20 minutes around the campfire and the tent site. Eventually, out of breath, Jane called out to Tracy…"Trace…take a couple of squares from the chocolate bar and please pass it on to Jill". As the other girls stopped and watched, Tracy stopped running. She bent over the chocolate bar and calmly broke off exactly two squares. She then looked up to locate Jill and moved across to give her the chocolate bar.
Murmuring spread through the group as they returned to their tents. "Why is Tracy so difficult?" one child grumbled. "She really pushes her luck," another muttered. "I’m glad I’m not one of her friends," echoed a third.
This story illustrates so well the issue of literality for Tracy. How can someone tell her that she can’t have the chocolate, when she actually does have it? For Tracy, holding onto the chocolate was a time of processing what she needed to do next. Her processing time was interrupted and she ‘lost’ her train of thought. Without clear instruction and structure to wrap in onto, Tracy is in a mind field without a map! However, if Tracy had been given clear instruction about taking two squares from the chocolate bar to have for herself, and then to pass the chocolate bar to the camper next to her on her right, this scene may never have occurred. Tracy has some great qualities. She is loyal, trustworthy, truthful and well committed to doing the tasks she chooses. She would make a good friend. However, because of her literality, as well as having difficulty with her own understanding of every day issues, she is often misunderstood. This only adds to Tracy’s feelings of isolation. She would be a prime candidate for depression, mental illness or even juvenile delinquency.
You call my name. "come play a game"
|To have a sense of ‘good self-esteem’
means to have a positive image of one’s self, of one’s identity. The word
esteem, itself, means, ‘to hold in high value of…'. If a child grows and
develops, over time, with the knowledge that they seem to upset people
frequently, misunderstand the world around them often and constantly be
in trouble for one thing or another…what is this going to do to their sense
of being a valuable and positive contribution? I know that for me I felt
a constant pull between being angry with others for failing to see my view
point, and despair at my inability to get things right.
Father wants to stop his two teenage boys yelling at one another. One son has an autism spectrum disorder. He stands near the boy with ASD, puts out his hand and calmly says "stop", then "…come and sit down here, you will hear each other better when you stop yelling and take turns to listen to each other".
By saying that we don’t have yelling in the house and the boys are yelling, the youth with ASD, who takes words literally, might assume you are lying or are stupid, because probably all three of you are yelling in the house!
Here are some more examples
the answer to all things is "He can",
His name gives hope,
He don’t smoke dope.
He doesn’t sit around and mope!
"Why can’t I be like him?"
"Why do I not fit in?"
"I’m not the same, can’t play your game,
What, I wonder, is in my name"?
|Each of us has a script that is both contributed to by our own evaluation of self and the judgements made of us by others. What is written in your script? What is written in mine? Does it say positive things about you or about me? I believe that the internalized script that I live my life from can either promote a healthy sense of self, or, a very unhealthy one. If I feel valued and welcome, then the image I have of my worth and of myself should also be one of value.|
I looked at you with questioning eyes…
"It’s OK", you said "I will not scoff".
You noticed my fear and my surprise.
"Am I really welcome here?"
"You’ll soon get fed up with me".
"Well, if I do I’ll just tell you so,
We’ll work it out, so have no fear".
"But I so often get it wrong".
"We all do that my friend".
But what if I hurt you?"
You will, I’ll mend".
So, how can I know if I should go,
When to be fast, or to be slow?
When to speak or silence show,
It’s your turn now, you have a go?
We’ll learn together, explore this land.
But you must allow me to hold your hand.
It won’t be easy, but we’ll stand our ground,
And come out triumphant, our friendship sound.
|So, we have explored literality. I hope
that you are getting the picture. What does it mean to be monotropic and
to think in pictures? It means that we can best process one event at one
time and we think in closed pictures. As neuro-typical people you probably
think in open pictures. What about generalising our learnings? Let me explain
why this is so hard for us. Remember that you think in open pictures? This
means that you can add to your learning. Your open build and integrate
your experiences. Piaget called it accommodation. You develop pictures
your schemas and enable your learning to generalize to a number of settings.
For example, if you eat around a table at home, you will eat around a table
in restaurants etc. If you think in closed pictures, however, you may eat
around a table at home but not associate eating with sitting around a table
outside of home.
Since receiving a diagnosis of ASD I have been able to come to terms with both who I am and what I can do. For example, I avoid social gatherings because they are very confusing and scary. I find it difficult to know how to maintain a conversation… unless it's about a favored topic of mine. I also get over loaded with all the sensory information that comes from people in a social situation, such as conversational noise, movement of people, clothing, doors and so on. The only time I enjoy social occasions are when they occur on my terms with friends that I know and trust. I can plan these times, enter and exit when I want to and I can be myself. I know that I will never be neuro-typical. I will all ways have Asperger’s Syndrome. If I am to have a sense of pride and dignity, of high self-esteem, then I need to accept me as being who I am, value my sense of difference and work with my talents, attributes and disposition. I also need others to do the same!
I tried to climb the big oak tree
I watched the boy who lived next door.
The boy next door then moved away,
The boy next door just was no-more.
|Difference is always uncomfortable. We
all like to be amongst that which is familiar, predictable and comfy. Imagine
how uncomfortable it would be if you took words and people literally, could
not keep up with a conversation because of the multiple-channels others
were using, thought only in closed pictures, so, again, were unsure of
what was being discussed, had a poor sense of timing so were unsure about
beginnings and endings and could not predict outcomes. You would so often
feel let down, disappointed, lied to and so on. How could you ever depend
on someone? However, when folk take the time to reassure me (I need this
many times a day) and clarify both my needs and theirs, then I cope much
I am very unevenly skilled. I have huge problems with being disorganised, getting lost, using public transport, understanding others, and just the practical interactions of social situations. If my sense of value came from being good at every thing, being an achiever at school, work and home, being able to get into other’s minds and be in tune with them all of the time. Well, my self-esteem would be zilch. However, when my self-esteem is high, rated on the fact that because I am, I am of value and any extras that I might possess are a bonus, then I can begin to build a positive picture of me!
|Practically putting this all together might mean:|
Building self-esteem at home is terrific, but it needs to happen at school too. Knowing what a student's study skills are is a good place to begin to know what skills they will need most help with. Designing a student inventory for both study skills and social interaction is a must at the start of every new term. For example, have the student complete a questionnaire, like the one following:
When relating to people who have an autism spectrum disorder (I prefer to call it delay rather than disorder) it is important to remember the keys to understanding ASD, these are:
Place expectations into context via 'social stories'. This gives the individual a fuller picture of the 'what's', 'wherefores' 'whys' 'hows' and so on.
Life on earth is but a moment caught within
the crease of time,
|SOME USEFUL REFERENCES
Al-Mahmood, R., McLean, P., Powell, E & Ryan, J. (1997) 'Towards success in tertiary study: With Asperger's Syndrome'. Commonwealth Department of Education and Employment Training and Youth Affairs. Melbourne, Australia. (to obtain copies of booklet: phone: 03 9344 8030, or visit web site: http://www.services.unimelb.edu.au/towardssuccess/)
Attwood, T. (1998) Asperger's Syndrome: A guide for parents and professionals. London: Jessica Kingsley Publications
Attwood, T. (1992) Professionals section 'Managing the unusual behaviour of children and adults with autism' Communication, Vol 26 (2) UK.
Bitsika, v., Sharpley, C. and Efrimidis, B. (1997) 'The influence of gender, parental health, and perceived expertise of assistance upon the well-being of parents of children with autism' Journal of Intellectual & Developmental Disability, Vol. 22, No. 1, pp. 19-28
Bourke, K.M. and Richdale, M. (1994) Pervasive developmental disorder, behavioural problems, family stress and level of support. Unpublished thesis. RMIT, Bundoora.
Frith, U. (1992) Autism and Asperger Syndrome. London: Cambridge University Press.
Harchik, A.E., Harchik, A.J., Luce, S.C. and Jordan, R. (1992) 'The special educational needs of children with Asperger Syndrome'. 'Educational Research Info Autism Group, University of Hertfordshire. Paper to Wakehurst Study Weekend on Asperger Syndrome. Chester, UK.
Jordan, R.R. and Powell, S.D. (Sept. 1992) 'Remediating the thinking of pupils with autism: principles into practice'. Journal of Autism and Developmental Disabilities, Vol. 22:3, New York: Plenum Publishing Company.
Lawson, W. (1998) Life behind glass Southern Cross University Press: N.S.W. Australia.
Rimland, B. (1993) 'Developmental Disorders: the autism continuum' Journal of Autism and Developmental Disorders 4, (23) 71-85.
Santomauro, J. (1999) The Mystery of a special kid, PO Box 293, The Gap, Qld, 4061 (email@example.com)
Santomauro, J. (1999) Set for gold: Stategies for life, PO Box 293, The Gap, Qld. 4061 (firstname.lastname@example.org)
Tonge, B.J., Dissanayake, C. and Brereton, A.V. (1994) ‘Autism: Fifty years on from Kanner’ Journal of Pediatric Child Health 30, 102-107.