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Autism Spectrum Disorder (ASD): Literality Change and Theory of Mind. Or Living With Autism Spectrum Disorder
Autism is: being present in this world,
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,
And play many parts so well.
But minus files for my redemption,
My part in life I cannot tell.

Life is like a video,
I watch but cannot partake.
My uneven skills are but an echo,
Of the frustrations which I hate! 

However, my focused use of time and space,
I would not give away.
I know that I am especially placed,
For some developed career one day!
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
  • Literality
  • Being singly channeled (serial concepts)
  • Thinking in pictures
  • Social non-priorities
  • Non-generalized learning
  • Issues with time and motion
  • Issues with predicting outcomes

    • Theory of mind (empathy lacks & empathy gaps)
SO THIS IS ME!

Twiddle dee and twiddle dum,
How on earth have I begun?
I started out all right you see,
But now I question "who is me?"

Which of these I know so well,
How I wish that I could tell. 
If only it could stay the same,
I’d work the rules out for this game.

They call the movie ‘Life’ you see,
But which is them and which is me?
I know for me the words serve well,
But as for others, who can tell?

I thought I’d got it,
But then came the shock.
You lot knew it,
But I did not!!
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.

Literality

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.
DENTIST STORY

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.
What is my name?

You call my name. "come play a game"
"We want you here with us"
I hear you not, in Time’s forgot,
"Leave Wendy out. She’s lost the plot"
You laugh at me, you run away,
I’m so glad you didn’t stay.
But angry or discomfort now,
Could mean for me the biggest row!
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. 
  • Two teenagers yelling at each other. Father comes into the room and yells "….we don’t have yelling in this house". The boys keep yelling.
Alternative response might be:

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

  • Young girl has her Mum’s newly baked cake in her hands. Mother says "…you can’t have that". Young girl ignores mum and tries to walk away. 
  • Teacher says to Andrew "…you do know that your homework is due on Tuesday, don’t you?" Andrew says ‘yes’, but, come Tuesday he does not produce his homework. 
  • Mother says to her teenage son, "…I’m going out for an hour. Can you make your bed?" The youth answers "yes, Mum." When Mum comes home the youth’s bed is still ‘unmade’. 
  • "I am bored, can I play a ‘bored game’? " …of course you can, which board game would you like?" "I want to play cards". 
  • Mother says: "This chicken is tough" Boy replies: "..Does that mean it was difficult to kill?" 
  • Store detective says: "You can’t take those. You haven’t paid for them". Teenager replies: "Of course I haven’t, I haven’t any money."
How about some of the words we use. For example, when an individual with ASD is told that they are going to Grandmother's house, they might be quite upset if that action statement (going) is not enacted immediately. ‘Going’ is a verb or ‘doing’ word. It is totally illogical to be ‘going’ later or soon. The abstract notion of 'in a while', 'later', 'when we are ready', and so on, does not compute if the term ‘going’ is used. However, one can prepare to go! Abstract reasoning is quite difficult and many ASD individuals find this very confusing.
"I want to be like Superman"
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.
You called my name, your tone was soft.
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!
What is time?

I tried to climb the big oak tree
Scampered across and scraped my knee.
I walked for hours, picked some flowers. 
If only I could just be me!

I watched the boy who lived next door.
He had a kite, I watched it soar
He had a bike, the boy next door
He had a car, I heard it roar.

The boy next door then moved away,
So did his kite and bike and car, they say.
I watched and listened, just in case
But they were gone and in their place

The boy next door just was no-more.
So did they really exist, or were they just a dream?
How can they be there and then be not?
Is it like something that I forgot?
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 better.

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:
Some Practical Tips
  • Focus in on the successes, not the failures, mistakes or ‘could be improveds’.
  • Discuss with your child/spouse how they view their own achievements and/or progress.
  • If they think they are ‘the best’ ask them to explore their reasoning with you.
  • If they think they are ‘the worst’ ask them to explore their reasoning with you. Be careful not to use ‘why’ questions and always frame or structure your question so that they have a framework to respond in. Avoid open-ended questions, we don’t know how to answer them!
  • Ask permission to work with them on any improvements they think might be necessary.
  • Ask permission to comment on their progress from your perspective.
  • Never assume that your comments for their improvement will be welcome, either ask to be invited to comment or share your own experience with them, if allowed to, being careful NOT to compare yours to theirs. Just state the facts. 
  • Always comment on any procedure that is done well, but aim not to comment when it is misdone!
  • Avoid using words that denote something is ‘bad’, ‘rubbish’, ‘a mess’, ‘awful’, ‘could be better’, ‘poor’, or ‘incompetent’. Individuals with AS can be quick to pick up on all that they are not, rather than on what they are or could be!
  • Offer lots and lots of positive reinforcement. I don’t mean bribes, but well-timed approval is terrific. Not only does it let us know that we are OK, but it's’ useful in teaching us what the most appropriate response might be. An example taken from a book I read states: "…..He always monopolises the dinner table conversation, so one day I waited for a pause as he was eating, and I said ‘ you know Barry, you talk much less at the table than you used to.’ ….and sometimes you listen to what others say and follow the dinner conversation’ (Dewey, 1992, cited in Frith, 1992).
HELP AT SCHOOL

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:

Study Skills

  • My hand writing is messy 
  • I write too slowly 
  • I do't like making decisions about what is (or is not) important when reading a book or journal article. 
  • I get distracted easily. 
  • I find it much easier when people use concrete examples; I don't know what to focus on in exams (and I always run out of time). 
  • I don't like sitting exams in strange places. 
  • I am a perfectionist. 
  • I'm not very good at problem solving (I don't like making decisions about particular responses). 
  • I find it hard to be motivated about some topics (and some topics upset me). 
  • I'm not always able to sit still for long periods. 
  • I'm not good at setting long-term goals. 
  • I am not good at getting to class on time or remembering all the equipment I need.
Social interaction
  • I like to be left alone at times. 
  • I'm never sure when it's OK to interrupt in a conversation. 
  • I have difficulty knowing when people are joking. 
  • I find it quite hard to look people in the eye. 
  • I'm not very good at interpreting non-verbal cues. 
  • I'm not competitive (winning or losing is not important to me). 
  • I'm not good at conversing with others. 
  • I don't understand what is funny in many jokes. 
  • Others have said my speech is odd or eccentric. 
  • I find it difficult to make friends. 
  • I'm not very good with sarcasm or metaphor; I like people to say what they mean. 
  • I can get impatient when people don't understand me.
(taken from 'Towards success' in Tertiary study 1997)

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:

  • we are singly channeled (we either look or we listen, rather 
  • than doing both at once). 
  • we take words literally: ("Can you make your bed James?"
  • Neuro-typicals mean "tidy your bed James", but a person with ASD might understand "Do you know how a bed is made?" to which the answer might be "yes" or "no", but it might not mean that James complies with the request, because he hasn't understood the instruction as it was intended.)
  • we are not good at predicting consequences. For example: child picks up stone to throw it and is very upset when it lands upon another's head!
  • We do not like change, because of difficulties with predicting outcomes.
Therefore it is good to:
  • Check out the autistic person's perception of what is being asked, demonstrated or said. 
  • Teach that behaviours, emotions and desires can have particular facial and bodily expressions. Explain what these are. 
  • Rote learn rules for specific situations (i.e. we hug family members, not strangers). 
  • Give time, whenever possible, to acclimatise to change and don't suddenly 'spring things' onto the person. 
  • When the individual is anxious: use music, space, reassurance, relaxation and breathing exercises, a calm voice and any other acceptable know anti-stressor. 

    • Place expectations into context via 'social stories'. This gives the individual a fuller picture of the 'what's', 'wherefores' 'whys' 'hows' and so on.
THE FUTURE

Life on earth is but a moment caught within the crease of time,
The seasons come and go again,
You have your life, and I have mine.
The seed that's planted within the ground
Cannot choose what to become.
A potato, an apple or a rose for some.
However, for it to be the very best,
It needs rich soil, not poor.
The sun and the rains must come,
To open that seeds door.
I may be born to nourish others,
I may delight the senses.
I may grow tall,
I may grow small,
I may stay stunted beneath wire fences.
My future may not depend on my stock,
So much as it does upon sources.
Sources of warmth, sources of care
I depend on the nurture to be for me there.
Then I can blossom and sing with the birds,
Then I can grow my potential.
So plant me in goodness and all that is fine,
Please keep the intruders away.
Give me a chance to develop, in time,
To become who I am, in life's future, one day!

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 (josies@powerup.com.au)

Santomauro, J. (1999) Set for gold: Stategies for life, PO Box 293, The Gap, Qld. 4061 (josies@powerup.com.au)

Tonge, B.J., Dissanayake, C. and Brereton, A.V. (1994) ‘Autism: Fifty years on from Kanner’ Journal of Pediatric Child Health 30, 102-107.
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