My Personal Testimony

 

This page was originally written in 1996, then updated in late 1997.

G'day everyone on the list. :-) I know I've been quiet, which I explained in a previous message. The reason for my lack of time on the Net is that I started a new job on the 9th of January 1996, which, though it's Government sponsored 6 month training position, I feel is an achievement, for reasons I'll describe below. I'm also involved in a 12 step mental health group called GROW (plug alert! :-) ), whose aim is to help people recover from a mental breakdown or (as in my case) improve one's mental health, so as to avoid a breakdown in the future.

A part of GROW is to share a personal testimony of outstanding recovery or growth, so we can give others in the group hope that they can overcome what problems are troubling them at the time. Last week, I came to the realisation that I had come a long way, especially since I had the burden of dealing with a "hostile and unforgiving" world, and had come a long way in dealing with the world and other people, as well as my own problems which stemmed largely from a low self-esteem.

In the context of this list, I'd like to present this not as a "testimony of recovery", but a "testimony of personal growth and coming to terms with a NT world".


First by popular demand, a brief glossary. :-)

AC - Autistic Continum (or cousin) - someone who has an autism related condition.

AS - Asperger's Syndrome - a condition related to autism.

NT - Neurotypical - someone who has no known neurological condition (what most people would call "normal").


My childhood memories are a bit of a blur these days, but what I do remember is that up until I was 13, I was pretty much an introvert, keeping pretty much to myself and a few select aquaintances (There are not many people I could truly call friends until I started uni). I was teased a lot by other kids, but never really knew why at the time. Another thing I remember is that I had an obsession with science and how things worked, and had no time for the more artistic side of life, with the exception of music, and cartoon shows at the movies or on TV.

Puberty was what probably brought me out of my shell, as I suddenly developed an interest in things that other kids did, such as sport and other extra-curricular activities, and I developed a new desire to meet and talk to people. However, as I didn't have the social skills to relate to people, I didn't make a lot of friends for many years after this, and old enemies from my primary school days kept rearing their heads from time to time. Fortunately, due to a combination of genes, heavy manual weekend work and sport, I became physically strong, and many of the other kids were a bit wary of me, especially as I was also had a bit of a short fuse at the time. :-)

My family environment was stable for all of my childhood, as my parents enjoyed (and still do) a stable marriage, but they didn't have the understanding to see that something might be amiss (possibly a bit of denial too). I don't blame them for that, but the result of this lack of understanding was a lot of "put downs" at home for being "stupid" or "silly", as I didn't understand things, even simple verbal orders in the same way they did, and I didn't have the capacity to look for a lot of things myself. This and peer rejection did a fair bot of damage over the years.

I started uni in 1986, full of hope that a change from my small town environment to a big city one would allow me to get over hurdle of being known as a "wierdo" or "nerd", and make new friends. In a way, it did, and I did make a few close friends during those years. For the first few months, it was like being in one of those "feel good" movies, where the young "reject" finally gets his chance at acceptance and a happy life, but by the middle of the year, the bubble burst, and depression with mild suicidal thoughts crept in. Being stubborn and a bit of a fighter, I sought help from the university's counsellors who helped by being a listening ear for the next year, but they couldn't help me find what was troubling me, as by this time my defensive behaviour was so ingrained it was hard to find the real me under the protective shell. While I never really withdrew from people, and shared some of my deep thoughts with friends, my real being was hidden so deeply that I wouldn't discover it for many years. At times, I was like a shell without a soul, to the point that my parents thought I might be taking drugs (which I never did at that time), and I felt like an alien put into a human body. I lived in the country with my parents and caught the train to uni during this period, which added to the stress and sense of isolation.

By 1990, I was having problems with my studies, and was studying part time due to having failed a number of subjects because of a combination of depression and difficulty of dealing with the increased demand for research (which meant I couldn't use my excellent rote memory). I had been into CB and amateur radio for a while by this time, and late that year, I became friends with a gang on CB who lived near the uni. One of that gang later became very special friend.

The next year, after more failures at uni, I was forced to find a full time job, while studying a single subject. I started work as an electronics technician in November 1990. Early in the 1991, I moved to Melbourne and shared a house with an aquaintance off amateur radio and his brother. At this time, I had some very serious (beyond the scope of this list) personal issues to deal with, while holding down a full time job and studying. Fortunately, luck (or as I believe, God) had a hand in events at this time. One of the guys from the CB gang, Mal, managed to find where I was living, and we renewed our CB aquaintances. He was to become a friend who I hold very dear, more like a guardian angel. It wasn't long before he saw that I was socially "different", and had trouble realting to people, but instead of turning away, he stood by me, and helped me get to the bottom of my problems. Through Mal, I sought the advice of another friend who was a minister. The minister suggested that I seek professional help, so next, we went to a GP, who referred us to a psychaitrist and psychologist. The psychs were able to tell me that I had autistic traits and that there was little they could do to help me except run a few diagnostic tests and offer counselling, which we went to for a while, until it was obvious that they were getting out of their depth. In the meantime, Mal did a bit of research of his own and suspected Asperger's Syndrome as being my condition. Through the various autism support agencies, we found a specialist who confirmed a diagnosis of Asoerger's. I now know why I was different, but no-one could offer any real support. The specialist was too expensive to consult, and the various agencies didn't offer the support I needed, as they were geared to either children or more severely affected people. There was simply no support for HFA people like me.

Mal did his best to support me emotionally and socially, but this took a toll on him, and last year, nearly destroyed our friendship. Fortunately, other help was forthcoming. In 1993, one of the universities was doing some research into Asperger's and teaching social rules. By sheer luck, I managed to get on the programme, which ran for several weeks. Through the programme, I met a woman who kept talking about GROW. Being curious, I asked her what it was all about, and she told me that it was a 12 step programme based on Alcoholic's Anonymous, but geared to people who have problems coping with life. Having nowhere to turn to, I decided to give GROW a try, and found instant acceptance from the people there, several of whom are good friends today. GROW basically works on the elements of a structured meeting proceedure, a programme of personal growth, which was written by people who have themselves overcome a breakdown or other personal problem, and is filled with wonderful everyday commonsense wisdom, and a caring and sharing community of people who build friendships and reach out to those in need. Through GROW, I slowly, over the last 2 1/2 years built up my self-esteem and worked through my secondary problems and depression. As an unexpected bonus, I also learned a lot about social interaction and how people relate to each other. I found I could learn a lot of social interaction and relate to people by building a personal database of peoples' behaviour and appropriate responses for a variety of situations, as well as learning to read peoples' emotions and other information from non-verbal communication. Contrary to some medical literature, my experience is that (at least) some AC's do have the ability to communicate nonverbally, but the "language" is quite different to that of NT's.

With Mal's help and the emotional stability I gained from GROW, I managed to get special exemption from exclusion from uni and graduated in May 1994 with a Bachelor of Electrical and Electronic Engineering. During 1993 (my last year at uni), I also got involved in extra-curricular activities and worked as a volunteer in the Union shop, selling student needs and performing a customer service role for students, which I enjoyed immensely. In 1995, I dabbled in community radio, again an enjoyable and fulfilling experience.

At the end of 1994, I bought some Internet access off a commercial provider, simply because I wanted to experience it for myself. A friend also encouraged me to get on it, and showed me how to use some of the tools, in particular, Gopher. Although I hav no idea what I was going to do online, I had one of those flashes of brilliance, and used Gopher to find some more up to date information on autism. I didn't find much useful except a reference to the St Johns Autism list, which I subscribed to. Through that list, I was able to subscribe to PAN-L and ANI-L, and gained the peer support I needed by communicating and exchanging ideas with other AC's and parents around the world. :-)

1995 was another of those years of change. I now had peer support, and combining that with GROW's ongoing support, I discovered who I really am and not only accepted myself as a unique person, but rejoiced in my own individuality. However, this caused a rift in my friendship with Mal, and that nearly ended the friendship because of increasing differences in opinions. However, he also needed my support, and the "crisis" that resulted made us both re-evaluate the friendship and patch up our differences and renew the friendship on new terms, stronger than ever, and with new understanding from both sides. We also made several AC friends around Melbourne, including a couple who both have autistic related conditions, and have been able to provide support and friendship to them from our experiences.

As I said in my preamble, I started a new job with the Hume City Council on a project to revitalise several strip shopping districts around the suburbs. The job involves surveying shopkeepers and the public, persuading the shopkeepers to work together to improve their strip, and providing a link between the shopkeepers, Council and consultants who are working on the project. As little as a year ago, I would not have considered taking on such a position, because of the constant social interaction, and the high probability of encountering a situation which I couldn't handle. Now, I've exceeded my own expectations in the role, and have discovered the power of determination coupled with support from close friends and peers. Although the possibility of an awkward situation is always there, I don't fear it so much, it's more of a challenge, like climbing a mountain simply because it's there, and expanding my capabilities. :-) From my understanding of medical literature and reports (including a prognosis of only minor improvement in 10 years), I'm exploring territory which is largely uncharted for people with Asperger's and autism related conditions, so it's an exiting voyage of discovery. In the end, I actually did manage a fait degree in this position (as evidenced by the new signs outside one of the centres :-) ).

1996 was a year of great changes. The position I mentioned above ended in July 1996, when the 6 month Government contract ran out. 6 weeks later, I started another job, this time as an onsite computer support person at a major university. This position lasted 3 months and taught me many skills which I would later develop during the following year. Another important event in 1996 was joining the Independent Living Mailing List, a series of mailing lists for people with developmental disabilities. This put me in touch with many similar people from around the world.

After a few months on the Social Security merry go round, another opportunity came around in the form of a trainee position as a computer technician. Again, it was part of a Government programme, but this one offered the possibility of ongoing employment. I started the new job in April 1997, and quickly moved beyond the original job description to become a network administrator. After the contract ended in August, the company decided to keep me on, and I'm still employed with them at the time of writing. The last year has taught me as much about myself as it has about networking. I now understand how my mind works and how to utilise this to advantage.

Along the way, I've aquired the ability to interact with NT people on their level, and because that interaction is learned, much like one learns science or maths at school, and not intuitive (as it is for NT's), I have a unique understanding of NT interaction or issues (much like people with both theory and practical experience have a better understanding of what they're studying). However, that NT interaction has not been at the expense of my AC identity or abilities. I am still very much AC (and always will be :-) ), and NT interaction is still foreign to me, though much easier and more "automatic" these days. I have a strong sense of who I am and where I'm going, and would like to pass on my experiences to others travelling similar roads. Emotionally, I'm very even tempered and stable these days, in contrast to me frequent aggressive bouts years ago. I put those down to constant frustration and not knowing how to handle it. Now, a lot of things simply don't bother me. That is probably GROW's influence, more than anything showing through. One of my next projects is to understand and document my ways of dealing with NT interaction so I and others can have a better understanding of people who are different in some ways.

In closing, I'm telling this as a story of hope for other people, whether they be AC's struggling to find their place in the world, or parents concerned for their child's future. I believe anything is possible, given enough perseverence and time. As I am only mildly AS, I've had less ground than some, and not everyone (or their children) here may be able to get to where I am. However, I'm sure you can exceed your own expectations by a long shot, with a bit of perseverence, love and support. :-)

When I first know I was "different", I prayed for a cure. What God gave me was something worth vastly more, an opportunity for understanding that exceeded my wildest dreams, and a range of unique experiences. If I now had the opportunity to become NT, I'd turn it down, as AC is a vital part of me. Take that away, and the person left if not me, but someone else. :-)

As GROW says, "God doesn't make junk". :-)

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