#WondrousWednesdays - Life With Asperger's

Gavin

This Wondrous Wednesday I'm introducing Gavin:

I'm 44, I live in Sydney, Australia and have been married to my childhood sweetheart, a neurotypical woman, for 16 years. We have two boys aged 13 and 10.  I lost most of my hearing at about age two, to an out of control ear infection and I'd always assumed that my differences were due to my hearing loss.  The one thing that didn't make sense was that I had trouble fitting in even with other people with hearing losses. 

It wasn't until my eldest was diagnosed with Asperger's syndrome eight years ago that I realized that there was another reason.  

As it turns out,I have Asperger's Syndrome. My eldest has Asperger's Syndrome, Non-Verbal Learning Difficulty and Attention Deficit Hyperactive Disorder - Inattentive type. My youngest has High Functioning Autism. I started my blog, Life with Aspergers (life-with-aspergers.blogspot.com) because after my diagnosis, I started rediscovering myself and I began to realize that at the time, many of my insights were rare. I wanted to give the world a chance to understand individuals with Asperger's syndrome and thereby give my kids and others a chance to share the same opportunities as neurotypical people.

My original ambition was to be a writer but for various reasons I ended up doing a degree in Information Technology instead. I now work in the finance sector doing computer work but continue to "scratch my writing itch" by blogging. In my spare time, I am also a cub scout leader.

2) What is your biggest challenge with your (or your family member’s) disability?

The challenges are constantly changing but I guess my biggest challenge is with my eldest son's ability to stay on task and retain information. I have a very good memory for facts and events and I don't take notes in meetings because I can usually recall the entire conversation.  My eldest son is the complete opposite. If he receives a two stage task, he is unlikely to even complete the first stage. It's very hard to keep reminding myself that his abilities are different.

In his early years, it was hard to understand that this was due to difficulties he had with processing instructions rather than "defiance".

3) What is the greatest gift from your (or your family member’s) disability?

Our family displays some fairly original thinking. My eldest was asked, in kindergarten, to hold up a mirror and draw what he saw.  His classmates all drew their faces, which was the point of the exercise. He did not. He walked around the room and drew what he saw, backward, blurred and interconnected.  It's an amazing piece of art.  My youngest is not artistic but displays an aptitude for computers which I have never seen in another child his age.  His creativity seems to manifest in intriguing ways to get around computer system defenses and limitations. At age seven, he was hacking wi-fi networks, breaking windows passwords and he even managed to arrange (and pay for) an overseas wedding for himself, including cars and accommodation. These days we know better than to try to limit him using technological means and we have been trying to teach him how to be a good online citizen.

4) What’s one thing you want people to know about your (or your family member’s) disability that many don’t seem to understand?

I guess the most important thing for others to know is that we prefer being the way we are. We don't "suffer" from Autism (which Asperger's is a form of). If we suffer from anything it's external to us. We suffer from the judgement and limitations imposed by others and by society.  It hurts deeply every time we hear of research being conducted to remove or "cure" our condition.  

5) What has been the best part of maintaining a blog?

The best part of blogging has always been the comments. My readers give such supportive feedback and ask such interesting questions.  Their questions will often cause me to reconsider and often completely change my point of view. I think that this is important for my own self growth.

6) What is a typical day like in your life?

My typicial Mondays start at 5.30am. I spend the next ninety minutes getting ready for work and getting my kids ready for school. It's a daunting task as they'll wander off to their ipads or TV (or anything else) whenever the opportunity presents itself.  I take a bus to work and try to sneak into my office without human contact.  I do my best work in the mornings before constant interruptions, meetings, and random computer issues pull me off important projects to deal with things "in the moment".  On Mondays I leave early at 4.30 and hurry home. 

As soon as I arrive home, I need to be changed and off to Joey Scouts to help my wife who is a leader there. Cub Scouts starts immediately after Joeys and I usually don't get home until 9pm, when I have dinner and see my boys into bed.  On the other days of the week, I work an extra ninety minutes at work and usually don't get home before seven.  The hardest thing about all of this is that I really don't get to see enough of my kids.

7) What’s your favorite pastime?

I'm a big movie buff but sometimes I think that I enjoy "collecting" movies (and indexing them) more than I do watching them.  

8) What’s your favorite food/drink? 

Without a doubt, it is ice cream. 

9) What’s a question I should have asked about you?

Anything about Asperger's syndrome really. My blog is full of information on how it feels to be inside a meltdown, what is going through child's mind when they line up toys and all kinds of other stuff.  It's funny but I can remember so many of my childhood thoughts and moments that re-evaluating them now that I know about Asperger's syndrome has provided me with some unexpected and interesting insights.

10) Anything else you’d like to share - a tip, words of wisdom, a recipe, a poem?

Although I do write poetry from time to time, it's usually for comedy purposes.  I think the best I can do here is a tip.

The best tip I can probably provide is simply a reminder that Asperger's syndrome and Autism are words used to describe the occurrence of a subset of a collection of behaviors in an individual. No two people are ever the same and we're still learning about new traits and differences. It's not an exact science.  If your child receives a label, just remember that it is only a label. It doesn't change your child. Your child should always be treated as an individual and never simply as just a label.

11) Would you like to recommend other bloggers my readers would be interested in reading?

My favourites are Rachel Cohen-Rottenberg (from http://www.disabilityandrepresentation.com/) who is always tackling the biggest and most painful issues in the community. Rachel touches issues which have no clear black and white solutions and brings out the best and the worst in her readers. Marita from Stuff with Thing (http://www.stuffwiththing.com/), an Australia blogger whose life is full of color and comedy. She shows us  exactly how much fun a mother with children on the spectrum should be having and Chloe Rothschild, one of my fellow writers at Special-ism (http://special-ism.com/) who represents the cutting edge of inspirational blogging youth with autism.