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. Therefore, life, for me, takes on meaning and purpose.
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.
As I have already hinted at, I have very uneven skills. This is another one of those enigmas. I have University degrees, I am married and I have three 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?!
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.
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. For me, 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 whatever 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!!
Since receiving a diagnosis of autism 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 favoured 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 be autistic. 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.
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? 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.
See also: Diagnosis brought 25 years of pain (from the Warrnambool Standard Newspaper).
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.