Saturday, May 23, 2009

An Introduction - Part One

I joined a newAspergers forum recently and decided to write an introduction - It's rare that I bother introducing myself in forums. Usually, I just jump right in and start asking/answering questions. Since I've not really done a proper introduction here, I figured it's probably a good topic for the next few posts.

I grew up in Australia in the seventies when Aspergers wasn't really a well known condition. Fortunately, I also had a hearing problem, I lost most of my hearing in both ears as part of an out of control ear infection aged about two. I say "fortunately" here because it was my hearing loss which enabled me to cope almost invisibly with the, then mostly unknown, symptoms of Aspergers.



If any photo screams out "Ear Infection", then I suppose it would be this one. Here, I'm on a tricycle with my older sister in our backyard.

Strangely, my next door neighbour was the same age and also deaf, though his deafness was considerably worse than mine. It wasn't until years later that I realised that the clue to my aspergers had been there all the time. My neighbour could hardly speak but his social skills were far better than mine. He had lots of friends and throughout primary school, I usually only had one at a time - and often none.

My deafness was picked up by an astute teacher in preschool. She, and the hearing center to which I was referred pushed me very hard in the direction of lip reading. I was told to look at people's lips when they talk - I still do. Without knowing it, they had gotten me around one of the first aspergers hurdles - the inability to look people in the eyes. Since I was looking at lips, people thought I was giving good eye contact and I didn't feel so uncomfortable myself.

I had an older sister and I always felt inferior to her. We were never especially close as children and she'd always run off to play with the girls further down the street. Sometimes I used to follow her but I never managed to fit in with the Barbie crowd and would soon be told to go home. In retrospect, these incidents were probably my aspergers social issues beginning to show. In the end, it was always the dog who was my very best friend.

At school, I was given quite a bit of help and any social issues I might have were always written off as "deafness-related". It wasn't until my later years that my mother started to think that there was something else wrong but she never pursued a diagnosis.

I had a lot of issues with meltdowns which generally couldn't be written off as hearing problems but somehow the doctors and psychologists would always either write them off as internal hearing issues or - believe it or not "bad parenting". I remember being taken to a psychologist who would ask me how I felt and would try to talk about "temper" issues and would ask me to do things like kick a rolled up paper ball around the room. This approach did not work well. For a start, you can't ask a young child, particularly not one with Aspergers to talk about how they feel and what provokes them when they lose their temper. Meltdowns and temper issues might look the same on the outside but internally, they're very different.

The problem with the psychologists was always that in the end, they'd shrug their shoulders and then point to my poor mother as the guilty party. Even worse, they'd do this in front of me and I'd find it quite amusing. That kind of behaviour today would have them out of the society but then, it was acceptable. I'm sorry to say that I gave my mother a "life of hell" because she bore the brunt of my issues as well as the blame.

My parents weren't bad parents and my mother in particular tried very hard to bring up a difficult child with a myriad of mostly undocumented problems. She didn't get a lot of help and since many of my issues were aspergers related, they were never identified. My father was also not a "bad" parent but he was rarely ever home. In my early days, he was a workaholic who would go to the pub for hours after work and then go to a technical college. On weekends, he would either be working building boats or racing them. Children weren't a big part of his life at that stage.

I had a lot more issues as a child and they included; bad asthma, for which my mother took me swimming every week and for which my teachers were lenient in sports. As a result my general sports clumsiness was considered "normal". I had bad allergies which kept me indoors (and away from social contact) more than some of my peers and I had dreadful clumsiness, for which I was taken to occupational therapy classes. In retrospect, I can now recognise the clumsiness as the "low muscle tone" problems associated with aspergers.

I had particular obsessions with objects and in particular, with Star Wars and the TV Show "Doctor Who" (both of which are still obsessions). I remember having issues with order and patterns and having all of my golden books lined up carefully and in a certain order. Even today, all of my books are in genre and ordered groups - and all of them have been covered in contact or hard plastic.

I guess that in my childhood, I was lucky because it seemed that everything I did, though it was misdiagnosed, led towards the right solutions for dealing with aspergers.

6 comments:

Damo said...

You have taken a brave step and introduced yourself most eloquently.

Well Done.

Rachel said...

This is a great piece. I thoroughly enjoyed it. Looking forward to Part Two!

bloke_with_a_ute said...

The trouble with aspies (he said, over generalising) is that they don't pay attention.

Anyway, a good summary. Not much in it I hadn't gleaned from earlier readings, but successive repetition does hone the fat from writing.

I suffered childhood deafness as a result of successive infections as well. Tonsils at two and a half, three mastoidectomies at year or two intervals and then deafness.

Like you, the deafness filled the gap for school people who were interested, and I changed schools often enough (my Dad's aspie too) to keep then off my case.

It wasn't until school was over and I was attempting university study that things fell apart. Then I hit the road. By the time I slowed down enough to be visible I was a computer programmer and I've done that with some success for the thirty or so years since then.

StatMama said...

What a great blog. I just found you while Google searching. I also have AS. Definitely looking forward to reading more.

Anonymous said...

Thanks so much for writing this blog and being so honest. I am the mother of a child with Asperger's, and what you've written about tantrums and meltdowns related to your own life has really helped me. You are doing good work!

JJ Lee said...

THANK YOU!! I have a hard-of-hearing seven year old daughter who was diagnosed with Asperger's six months ago. Your post gives me a clear insight into what goes on in her head!