Busting Myths About Autism
Being diagnosed with an ASD (specifically Asperger’s Syndrome) in August 1994, I would suggest that I experience the same kinds of difficulties as others diagnosed with ASD. For instance, we dislike change (we prefer routine), we tend to be obsessive, we become anxious very easily and we take what is said to us literally (For example: teacher says “…pull your socks up John or you won’t make it into the team.” John bends down and pulls his socks up. The teacher tells him off and calls him a ‘smarty pants’. John replies that he doesn’t have any smarties in his pants. Teacher sends John to the head mistress/master because he ‘talked back to them’. John doesn’t know what all the fuss is about… he is missing his favourite period at school, the time on the computer and he becomes very upset. John comes home with a note from his teacher that requires him to do detention for insolent behaviour)!
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.
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.
Studying’: For the student with ASD
As you probably know, neuro-typical people are quite different to those of us with ASD. They may seem strange and confusing. Why do they say things they don’t mean? Why do they so often talk in riddles? Why aren’t they interested in our most favoured of topics? Why do they choose to be amongst a whole group of folk at a party rather than spend the best time on the computer? Why do they have such complicated emotional interactions and relationships? In fact, why are they so illogical and complicated when life is all so simple?
Student’s with ASD have different priorities. We fail to see the rational for taking lots of time to socialise…. It simply seems like a waste of time! It doesn’t mean, however, that we don’t need leisure time… we just spend it differently.
Understanding the differences between us is one essential ingredient in working together. For most of us, talking and sharing in conversation is an every day fact of life that requires little thought. If, however we are going for an interview, or to an appointment that requires ‘careful conversational consideration’ (the 3C’s), then we usually take more time to think and construct what we want to say. “So, what’s your point?” you might be thinking. Well, if we are talking to neuro-typical individuals (folk who don’t have an intellectual, social or communication disability) then ‘conversational chit-chat’ (the other 3 C’s) might be appropriate! However, when we are talking with individuals with an Autism Spectrum Disorder, the three C’s we choose can make a difference as to whether or not we are understood. As we all know, understanding is the first ‘key’ to good communication.
WORDS
Communication, orchestration and any other ‘action’,
Can lure and connive its path
On peoples thoughts and others behalf.
But what of us autistics?
We think and we ponder,
While you lot sit and wonder.
“What is exactly going on?”
You say within your mind.
We know without a doubt.
But you need time to work it out.
For us it’s all so simple!
Words are what they seem to be.
To us there is no problem!
Herein lies the hitch you see,
Words for you or words for me?
We tend to view things differently!
Taking words literally and thinking in pictures is what I do naturally. Knowing this can be used as a tool to aid my learning. For example, if you want me to understand a topic, theme or remark… then I need you to ‘put me in the picture’ or ‘paint a picture of it for me’. This means using words to give me the mental images that build a picture of what it is you are saying. If I don’t have a picture for it, then I can’t think it.
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? You would so often feel let down, disappointed, lied to and so on. How could you ever depend on someone?
One of the ways I have dealt with this is to structure my daily life. I need my rules, rituals and routines to help me cope with uncertainty and with the threat of change. Change is uncomfortable for all of us but, it can be devastating for us autistics!
TIMETABLES AND STUDY SKILLS
I guess that it goes without saying that student’s need time tables. But, what if the time tabled program has to be canceled? Maybe the teacher is sick or maybe the bus driver failed to turn up! For whatever reason, the activity will not take place. Now, to an ASD student this can be devastating. Remember the problems we have with ‘predicting outcomes’? Well, we don’t do this at all well. Therefore, we don’t cater to being adaptable and accepting of ‘unprepared for’ circumstances. It is very wise to have options time tabled. If swimming has to be canceled… then have option ‘B’ (Table Tennis for instance), already time tabled as an alternative.
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
Social interaction
(taken from ‘Towards success’ in Tertiary study 1997)
OK, as I have already hinted at, I have very uneven skills. This is another one of those enigmas. I have University degrees, I have been married and I have four grown children. However, I have huge problems with being disorganised, getting lost, using public transport, understanding others, and just the practical interactions of social situations. I think many of you might be saying “So what, I do as well.” I know that neural-typical individuals might have issues in these areas but I would suggest to you that it is the degree of the ‘issue’ that separates us. How many of you need to sit down on the path outside of a supermarket and do breathing exercises because they have changed the tinned soup isle?
MY LIFE AND YOURS
“Wendy, Wendy” I hear the teacher say.
“Wendy, Wendy, please look this way.”
“Wendy, Wendy”, I hear the children say.
“Wendy, Wendy, please come and play.”
I hear the words that come each day,
“What do they mean?” I hear me say.
Words without pictures simply go away.
I turn my head and look instead
At all that glitters; blue, green and red.
“You’ll like it here” Father speaks,
Come and play with Billy”
Inside my head my brain just freaks,
“How can they be so silly?”
“Why would I want to do this thing”
My mind can find no reason.
“Please leave me with the sparkly string,
This gives me such a feeling.”
* * *
PERCEPTION AND COGNITIVE PROCESSES
Autistic Perception, Cognition and Processing of every day live is quite different to that found within the neuro-typical world. Consequently, without specific ‘keys’ that help us to understand ASD, communication with others can be confusing and open for mis-interpretation.
Within my own experience and those shared with many of my Autistic friends we have noted that our perception, cognition and processing of every day life is governed by the following factors:
For me, how I process life is therefore, dependent upon the above factors. Understanding these concepts will give us more ‘keys’ to comprehending Autism.
I suggest that an ASD individual’s life needs to be structured and orchestrated due to their difficulty with predicting outcomes. For example, a child’s need to line up objects or engage in other ordered tasks and obsessions is born from the need to know what will come next and to be sure that this will always happen. Perhaps the reader could pause for a moment and ‘imagine’ how life might be if they were not able to predict consequences!
Being singly channeled and only able to perceive one concept at one time, serial fashion, indicates that I need to be given instructions one by one. It is very easy to overload an ASD person with too many words or concepts at once. Neuro-typical people can be multi-channeled, able to look and listen at the same time (i.e. drive a car, engage in conversation and listen to the radio all at the same time). Due to my being singly channeled, however, this would not be possible for me.
Every situation that I encounter is like encountering it for the first time. I tend to not take what I have learnt from one situation and be able to apply it to another. This makes generalising my learning’s very difficult. However, I can learn to generalise by academically learning the rules for each situation independently.
Sometimes events that are stored in my long-term memory present not as parts of the past but as very present issues. Time, therefore, for me appears to always be in the present. Concepts of the ‘Future’ are very difficult to imagine.
WHAT IS TIME?
I tried to climb the big oak tree
Scampered across and scraped my knee.
I walked for hours, picked some flowers.
It 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?
I use this rhyme to illustrate my experience of time. This concept is actually very difficult to explain. It’s as if time stands still. Other people, events and happenings may move on but I am left behind. My emotions, my feelings, my thoughts all accompany me, but they don’t seem to move on when time changes. Of course some aspects of me do move with the times. I am aging or maturing if you like, but that’s on the outside of me. Inside I find it difficult to adjust to change and, as Tony Attwood (1996) might say “I have the inability to forget.” This might seem like a contradiction, because actually I am very forgetful!
For example, I may forget what I need to buy at the shop, but I can’t forget the theme of a video, the outfit someone was wearing or the layout of a venue I lectured at. Indeed the whole arena of ‘time’ is a fascinating one and I really haven’t worked it all out yet.
School was a nightmare! I was so easily caught away with life’s interruptions. It might have been a child coughing, a bus passing by on the road outside, a bird singing, or simply my own thinking trying to work out words from a previous conversation. I couldn’t organise either myself, or my time. I knew that I didn’t ‘fit’ anywhere. Even when I tried to talk to my peers, somehow my words only compounded the issue. My father once said to me “make friends Wendy.” I knew how to make a rice pudding, I even knew how to make my dog sit, but I had no idea how to make friends!
“Wendy appears to be almost incapable of doing as she is told” The report went on “…she must learn to have the right things at the right time e.g. ‘a pen’ “Wendy must GROW UP!” These words are taken from my Year Seven School Report. Just a few years later I was said to be ‘suffering with schizophrenia’.
In some ways the medication was useful and at times it curbed my anxiety. What it didn’t do was explain social interaction, the ‘usual’ rules of what it means to be human.
Obsessions, or particular interests, are another of our varied skills! I have the ability to stay focused for hours! However, this ability only applies to areas of my interest. Not that many years ago I would always begin a conversation with “..did you know..? Or, I might have said “…and what do you know about…?” It never occurred to me to begin a conversation with such niceties as “hello” or, “Hi, how are you?” I really wasn’t’ interested in others talking so much as I was in having them listen to what I needed to say! Over time I learnt that if I wanted to engage in ongoing conversation, then I had to let other people tell me their stories as well.
Learning to recognise overload is very important. Prevention is better than cure! Each individual is different and, therefore, will have different strengths, weaknesses and limitations. Ultimately it is in the individual’s best interest to learn to recognise these themselves. In the meantime though, until that happens, it is up to the parent, teacher or carer to aid the understanding of this process.
When a child covers their ears, becomes increasingly restless, paces the floor, loses interest or simply moves away from you, then they may be already overloaded.
Our concentration span is very limited and we soon tire. Using subject material that we are interested in is very helpful and will facilitate longer interest. At school it was always difficult for me to learn about things that I was not interested in. I don’t know why this was so. I just couldn’t see the point. Temple Grandin (1996) talks about ‘thinking in pictures” and I certainly am one of those people who does this. I have wondered if this might have some bearing on the matter. Maybe I lacked the connections to build appropriate pictures if the material to be learned didn’t have a familiar component to it. Maybe, if I didn’t have a picture for it I couldn’t think it?
Bitsika and Sharpley (1996) found that families who were supported and who experienced ‘hope’ for the future, suffered less anxiety than those who were ‘out there alone’. Understanding ASD, being part of a support group, having autism friendly teachers and other professionals, are some of the key factors in promoting a sense of hope and vision for the future.
COMMUNICATION KEYS, SOME HELPFUL HINTS
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. Again, these are:
Therefore it is good to:
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.
Jordon, 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.
Rimland, B. (1993) ‘Developmental Disorders: the autism continuum’ Journal of Autism and Developmental Disorders 4, (23) 71-85.
