Autism is: being present in this world,
I know that I am alive; I breathe, move, talk and function just like any other Human Being. However, I understand (because it has been said to me) that other people perceive me as being different to them. My difference expresses itself in various ways, (egocentricity, eccentricity, and emotional immaturity) but, in particular, in my uneven skill ability. Life seems to me to be like a video that I can watch, but not partake in. I sense that I live my life 'Behind Glass'. However, at times I am completely taken up with an obsession or a perception that may dominate my existence and make it easy to stay focused. For me, such times mean that I feel 'connected' to life. Life, for me, takes on meaning and purpose.
I started out all right you see,This poem aptly describes my need for 'rules'. I had rules for everything. If there were no rules specified, for example: only cross a road at a crossing, then I invented my own rules. This I did so that I had guidelines enabling me to navigate my way through the process of daily living. However, as you all know there just aren't always rules for all situations, except maybe the rule that says, "there are no rules'. Unfortunately I didn't learn that rule at this time!
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!
It was in 1996, when I was talking to Lawrie Bartak at Monash University, that I learnt the rule that people are allowed to change their minds! This new rule really helped me to cope with the fickleness of human nature. It also gave me an escape route for times when things happened, usually things beyond my control that meant I had to change my plans. For years and years I lived with guilt and extreme anxiety just because things changed all the time.
One of the best tools that we can equip our youngsters with is that of teaching them strategies to cope with change. One of those being that it is OK if things don't go exactly to plan.
Change, change and more change,
Are painful beyond recognition,
How often does a parent throw up their hands in despair over the inappropriate behaviour of their child? "...needs a good hiding" says the woman behind me at the cash registers. "Kids like that got no discipline" says another. "I blame the parents. They should be made to control their children!" Her neighbour suggests.
Their words served to reinforce my sense of despair. For some years I had suspected that my son was not just 'being naughty' but that he had particular problems associated with every day life. In fact they mirrored the same type of problems that I myself had encountered.
" Wendy appears to be almost incapable of doing as she is told" the report went on "...she must learn to have the right thing at the right time eg. '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 from schizophrenia'.
It was to be more than twenty five years later that this diagnosis was over turned. Schizophrenia is an appropriate term that describes the issues many people live with. Properly diagnosed and treated many individuals are able to live full lives. However, the problems that I encountered on a daily basis did not truly fit the picture painted for me of such a diagnosis. 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.
You see, I now have a diagnosis that explains who I am, why I do what I do and what I can do to help myself understand my environment better. Recent studies indicate that 9 in 1000 children will be autistic (Communication, Spring 1997).
Autism impacts on individuals in various ways but it always affects the way we view and understand the world around us.
Today, I 'connect' more readily with life and enjoy both family and friends around me. I am happy 'alone' especially when I can pursue my own interests and I have developed strategies that enable me to more than cope with life's demands. However, for more than forty years I lived with intense feelings of confusion, frustration, depression and isolation. This does not have to be the sentence for our children and autistic adults today. With appropriate support and intervention their lives, and those of their families, can be quite different!
How distressing it must be for any parent to know the joy of pregnancy, of giving birth and then watch their hopes and dreams diminish as their family life is subject to confusion and subsequent erosion. For many parents it's a long haul to eventual diagnosis. Sometimes a parent has been to many different doctors, psychologists and other professionals, but to no avail. Often they are left with feelings of isolation, despondency and the belief that they must be terrible parents.
Although in the past autism was perceived to be directly related to poor maternal care and attention, today it is considered to be a disorder of the Central Nervous System (CNS) possibly genetically based (Prior, 1992:90). However, children with autism respond very well to 'concrete learning' situations and behavioural management strategies (Attwood, 1992).
Families with an autistic child experience much frustration and may even think that their child is simply out to make life difficult for them! More often than not, the child simply hasn't really understood.
Sometimes, individuals need a specific program prepared for them by a psychologist. Unfortunately, unless the individual is intellectually disabled, the parent or carer will have to bare the cost of this themselves.
For some professionals autism and intellectual disability are seen to be synonymous terms that are interchangeable. This is not the case. According to Tonge, (1994) intellectual disability occurs in 70% of autistic children. This leaves 30% of autistic children with average or above intelligence whom, although suffering from severe communication and social deficits are not taken seriously by many within their community.
As I have said, most ASD people find their sense of security in their rules, rituals and continuity of roles. Therefore, it is very distressing when life does not go according to our expectations. This is one reason why we manipulate our environment and the individuals that share it with us. However, when we feel safe and reassured, are need to manipulate decreases.
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. I personally believe that parents and professionals will benefit immensely from ASD training. I have some materials relating to such a program that you can look at. As far as I am aware this program is one of its kind in Australia, perhaps, currently, in the world.
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. However, until that happens it is up to the parent, teacher or carer to be responsible for 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 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?
Carly, one of our courageous teens, is taking charge of her responses to the hostilities of a world that typically doesnot allow for her type of cognitive processing. After years of not being able to speak, or to effectively communicate, she has made the computer a vehicle for sharing what is on her mind. This is allowing her to tell others how she feels and what she needs, thus reducing frustration and anxiety. Carly is very single minded and only responds to things she is interested in. This is in line with her autism and attention directives: A default style associated with the particular way our brains process information and associated cognitive attributes in autism. Carly may not speak but she sure is communicating! ICT could be the vehicle that allows so many individuals to communicate in ways that enable them, rather than disable. Please watch the video about Carly --->
I tried to climb the big oak treeI 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 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 area of 'time' is a fascinating one and I really haven't worked it all out yet.
Obsessions or particular interests are another of our varied skills! I have the ability to stay focussed 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 them 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.
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?!
I will give you some other examples from my own experience:
From January - June in 1997 I studied at a University in the UK. I was living in Halls and as a consequence these are some of the difficulties that I encountered.
Dining rooms, TV rooms, the games room and the bar are all terrifying places and I will avoid them if possible. Unfortunately I had initially paid full board so my meals were included. Lining up for meals was very uncomfortable. If students had stood in an orderly line, single file, it might have been workable. However, they tended to push in, move across to be with other students that they appeared to know, and stand three or four abreast. I did not know what they might do next! When I finally arrived at the meal counter I took what ever was given to me and found a seat to sit down at and eat. Again, unfortunately, I needed more time to think about what I wanted to eat, so because I hadn't taken the time I often ended up with a meal I didn't like or couldn't eat!
I did try arriving early, but the queue just built up around me. Then I tried organising a meal with the kitchen, arriving late and just collecting it before they closed. However, I then had no choice over what was kept for me. In the end I moved into self-catering Halls and this solved the problem. From then on, during the remainder of my stay I lived on Baked Beans, fruit and cereal!
One other example I'll give you is the laundry. I was supposed to change one sheet from my bed every week. I didn't know how to do this (should I carry the sheet in a plastic bag, tuck it under my arm or what). I didn't change any sheets for 5 weeks. Then I saw another student taking a sheet to the laundry, so I did as they were doing. The laundry lady said, " Top to bottom dear" I hadn't any idea what she was talking about so, as usual, I just smiled. It was several weeks later, after I had been taking my one sheet to the laundry, that I realised what she had meant. I helped my friend change the sheet on her bed. As we did so she said "top to bottom" and placed the top sheet on the mattress, using the clean sheet as the top sheet under her quilt. "Oh" I said "is that what you are supposed to do?" I had simply been taking my top sheet off the bed and putting the clean one on in its place. I hadn't changed the bottom sheet at all!!
Getting through my PhD was one of the hardest things I've ever done. It took me 10 years to format from the beginning of the thought process and start of the journey till getting through the 4 years of part-time study with Deakin University in my home town of Warrnambool. Almost every day I wanted to give up! With the support of family and friends I hung on in there and finally, on the 15th. of August 2009 I heard officially that I had passed.
Wow, what an amazing thing to hear... just over 50 years ago they said I was intellectually disabled.... I couldn't speak or communicate well. As I have said so many times, not being able to speak is not the same as not having anything to say! Frustration levels are pretty high in autism and, those of us on the autism spectrum know huge amounts of anxiety. So often this could be reduced if families & professionals alike would explore what being autistic means.
I hope my PhD will contribute to increasing understanding and lowering frustration for us all, whether on the AS or NT spectrum.
I hope that this presentation has helped to increase your understanding of ASD. I must stress again, that this talk is both from my own personal experience and from my studies. ASD individuals have different personalities and, therefore, their autistic expression will vary accordingly. Some individuals are 'in your face', up front, perhaps extraverts, others are shy, withdrawn, perhaps introverts and so on. It really is important to see us as individuals.
REFERENCES
Attwood, T. (1992) Professionals section 'managing the unusual behaviour of children and adults with autism' Communication 26 (2) UK.
Bitsika, V. and Sharpley, C. (1996) Conference Notes. Monash University. Clayton. Victoria.
Communication (1997: Spring) 'New statistics on the autism spectrum' British Autistic Society, 393 City Road, London. EC1.
Prior, M. (1992) 'Recent advances in the neuro-psychology of autism' Autism: The puzzle. Are the pieces starting to fit? National Conference Proceedings. Autism Victoria, Glenn Iris. Vic. Australia.
Tonge, B.J., Dissanayake, C. and Brereton, A.V. (1994) 'Autism: Fifty years on from Kanner' Journal of Pediatric Child Health 30, 102-107.
I enjoy listening to music. My favourite classical piece is Dvorak's New World Symphony. My favourite song is 'The Power of Two' by The Indigo Girls. 'Through My Eyes' sung by Thanh Bui and written by Valerie Foley was the theme song at a recent conference and it's just great! reckon it's the cry from so many autistic hearts!
My Books 'Life Behind Glass' and ''Understanding and Working with the Spectrum of Autism An Insider's View' are 2 of the 7 books available for purchase. The first book explores my experience of life as a person with an Autism Spectrum Disorder, however, it also aims to help others deduce strategies for living with autism in various ways, such as an autistic person, a parent or worker who lives or works with autistic people. My second book explains more of the way people with ASD think and react to the world using comparisons from the non-ASD world to help professionals, families and carers to relate to and communicate with people with ASD better. Further details regarding all my books are available here.
Here are some of the talks and interviews I have given over the past few years. In order to listen to these, you must have RealPlayer installed on your computer. The player can be downloaded free of charge from RealNetworks. Once installed, just click on the title that interests you to start listening.
If you have found this web page useful please feel free to contact me on my e-mail address: wenbe@bigpond.com If you have ideas of how to improve this page, I would be happy to hear of them.
Wendy Lawson has an Autism Spectrum Disorder. However, Wendy has graduated, over time, from being a child considered to be intellectually disabled and 'almost incapable of doing as she is told' (as one school report stated) to a mum of four children with five university degrees. She now operates her own business.
As well as running training programs for those wanting to understand autism better, Wendy is a poet and a writer who possesses a real passion for words. "It was when I came to understand that 'words' could explain the world better that my love for them increased. With each and every word I have a corresponding picture. As these pictures form links within the chain of life so my experience becomes more 'real'.
"I want to share my autistic understanding with others. This may then help them to understand what being autistic is like and in doing so a bridge can be formed, running from my world to theirs. Making the journey into their world is never easy. Although I have achieved a great deal in the past few years, I still need to rely on a network of people around me to support me at home in Warrnambool, Australia. Especially my family, including my partner Beatrice without whom I would not be able to do the work that I do."
Once there was a time when Wendy felt isolated and without hope. Living with a mis-diagnosis of Schizophrenia for over twenty-five years, her sense of 'self' was non-existent. Now, Wendy has found both herself and her space. A place of belonging, purpose and most importantly, a place of hope. Hope for the future. Enjoy the journey!
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Disclaimer: These are my own views and should not be construed as medical advice. People with Autism and Asperger Syndrome are all different and what works for one person may not be suitable for another.
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