Friday, April 30, 2010

Parent's Eyes: An Interview With Gavin Bollard--A Fantastic Dad Living With Asperger's

Gavin Bollard had no what Aspergers was until 2006 when his eldest son, then six, was diagnosed with it. Suddenly, he had to learn everything about it in order to understand and help his son. A couple of years later, Gavin’s younger son was diagnosed with high functioning autism. Through his research to help his sons, he discovered something else: A lot of what he was learning described how he had always felt too.



He eventually sought the help of a psychologist who confirmed his suspicions that he might be have Asperger’s. This inspired him to start blogging (“Life With Asperger’s”) both to reach out to others as well as to explore and promote the positive side of Asperger’s and autism.

I was absolutely thrilled when Gavin agreed to give us “The Gift” readers some insight into not only what it’s like to be a ‘sensational’ dad but also what it’s like to be an adult, raising children, living with Asperger’s. I know you will all enjoy our chat and be left feeling as inspired as I was. Let’s welcome Gavin to “The Gift.”

CHYNNA: Gavin, thanks so much for joining us here with all you have going on right now. Let’s start with a little bit about your background.

GAVIN: I'm in my early 40's and live in Australia. I've had a sheltered but interesting life with a lot of stability mostly driven by the conservative choices I've made. I married my high-school sweetheart, went to university part time and have never worked in anything other than a full time permanent position. The shortest time I've ever stayed with a single employer is six years and I've never been out of work. A lot of my life is deliberately planned to avoid risk. It was originally a dream of mine to get into writing and it's something that apparently I do well. Unfortunately, writing is too risky a proposition and I couldn't bring myself to try it. Instead I went for computing—a special interest of mine and a field in which there is guaranteed work.

I have a significant hearing disability brought on by severe ear infections as a baby. I believe that the hearing loss actually reduces my sensory issues and is the main reason why I'm able to function reasonably well around other people. I have two wonderful boys, aged six and nine and both of whom are on the autism spectrum. Like many parents in my position, this has led me to autism advocacy. I'm concerned that the two things my children need most, early intervention and acceptance, aren't as available as they should be.

CHYNNA: I totally agree with you about early intervention and acceptance—those are the most important aspects in helping our kids. And it’s fantastic that you are using your personal experiences, as well as those of your boys, to educate others. As we mentioned in your introduction, you have an amazing blog called, “Life With Asperger’s”. What was your main inspiration for creating your blog and what can we find there?

GAVIN: I started the blog as I was beginning to come to terms with the "Aspie" label. Almost a year earlier, my eldest son had been diagnosed with the condition despite my fierce denials that he was "normal". After all, he was exactly the same as I was at that age. As my wife and I began to educate ourselves about Aspergers, we were both thinking the same thing. The books described my quirks far more than those of our son. Following two school meetings, several months apart where my son's teachers had made the point, none too gently, that I was most likely the source of my son's differences, we decided to ask a psychologist.

The confirmation of my condition started a roller-coaster of emotional trauma for me. On the one hand there was a lot of sadness because I'd always assumed that I was "unique" and suddenly, here I was, lumped in with a whole group of other, similar people. The things that made me "special" turned out to be mostly mundane "gifts" that others on the spectrum share. It led to a lot of depression. On the other hand though, I felt that I was finally beginning to understand myself. I started to realise the source of so many mistakes in my life. It was during that period of turmoil that I turned to the one reliable form of therapy that had helped me throughout my life: writing.

Being an IT person, I tend to feel that writing on paper is wasteful and that everything should be done on computer. I didn't want to use traditional tools because I wanted a "diary-like" structure. Blogging seemed to be the obvious answer. Since I've never had a great sense of privacy, I decided to keep my blog public.

At the same time, I was spending quite a bit of time on Asperger forums, particularly WrongPlanet.net, trying to sort out what were aspie traits and what was simply "me". I kept seeing the same questions coming up over and over again and I got sick of constantly answering them - but I couldn't help it because I've got a bit of OCD as well. In the end, I decided to blog my answers and post links instead.

As for what you can find on Life with Aspergers, you'll find my answers to the most commonly asked questions about Aspergers. I don't try to present a medical viewpoint - I'm not qualified to and I think there are better sources for that. What I try to do is to write from the heart and to let people know what it feels like from the inside out.

CHYNNA: I have also found tremendous comfort in writing. It gives us a way to express our feelings, frustrations, emotions and other things in a healthier way. And, like with bloggers like you, it gives you a way to inform and educate others on important issues. You’ve done amazing things there. On a personal note, Gavin, can you give us some insight on what it’s like living with Aspgergers? How long have you lived with it?

GAVIN: It's difficult to say exactly how long I've lived with Aspergers. It's a lifelong condition but until recently, I didn't have a name for it. I've really only been aware of the label for about the last five years but I've felt like an alien for most of my life. I've always felt that I was on the outside of conversations and that I couldn't connect with other people. I used to think that it was a symptom of my deafness but I could never figure out why, even wearing hearing aids and hearing every word in a conversation, I simply couldn't participate.

I think that Aspergers differs quite significantly from one individual to the next. In some ways, my children are very different from me, and different from each other. I've read a lot of blogs and books on Aspergers and seen a lot of films on the subject. Every one is quite different. I even find that my symptoms vary in intensity from one day to the next. It's funny but when I first started reading about Aspergers, I couldn't see the individuality. It was a major source of depression for me because suddenly everything I knew about myself changed. I stopped being able to accept myself as an individual and began to see only an animated "aspie" character.

It's been a long trip back but now I'm able to accept my own individuality. Aspergers doesn't define me, it provides a degree of guidance but the individual within me truly defines my "shape".

CHYNNA: I greatly admire the personal and emotional journey you took yourself on for self-acceptance of your diagnosis. You’re definitely a source of tremendous inspiration for your boys and for other families living with Asperger’s and ASD. From the dad’s perspective, what hurdles, if any, have you experienced? You mentioned that one of your boys shares your diagnosis. Does that help you parent him or does it cause more issues?

GAVIN: Both of my children are on the spectrum. My eldest is diagnosed with ADHD (inattentive), aspergers and learning difficulties and my youngest was diagnosed with high functioning autism. At the time, I queried my younger son's diagnosis and was told that the only difference between aspergers and high functioning autism was a language delay. I then asked what would happen if he spent enough time with a speech therapist to remove the language delay—would he receive an "upgrade" on his diagnosis? That was when I was first made aware of the impending changes to the DSM, to put everything under the broader autism "umbrella". My youngest was diagnosed at a much earlier age than his brother. It's my belief that had his brother been diagnosed earlier, when his language was still delayed, he would have received "high functioning autism" too.

The biggest hurdles I've experienced as a dad came before my son was diagnosed. My wife and I used to have constant arguments over our son's "normality". I could never see anything wrong with the things he did. They were always similar to things I did as a child and I'd always assumed they were normal. In fact, they were normal for someone on the spectrum. It was difficult to come home and hear my wife's tirades against our son. It made me extremely defensive and almost tore our marriage apart. Of course, being aspie myself, I didn't have a great deal of sensitivity in these matters and I didn't realise how our son's differences were affecting her. She would spend time with her mother's group only to face exclusion because our son's behaviour and lack of interaction meant that she had to be constantly on her guard. It took me a long time to get my head around the "differences" and to become supportive. I'm extremely grateful that my wife had the patience with me to make it through those dark days and through the turmoil which followed my diagnosis.

The second biggest hurdle I faced was in terms of discipline. As a new parent, you start out with all kinds of rules and preconceptions. I didn't want to "smack" my children but I wasn't going to "baby" them either. As my son started destroying my carefully ordered world my nerves began to shred. I was urged by "experienced" parents from the previous generation, to tighten my discipline but I couldn't raise a hand to my child. Eventually after trying their methods for a short period, I mentally "banned" smacking altogether and replaced it with quiet disapproval. This caused a lot of domestic friction because my inaction meant that my wife had to deal with the majority of the problems and she resented being seen as the "angry parent" to our child. Our second child considerably upped the ante because he was (and still is) far more destructive than his brother. He started by eating the wallpaper from our recently wallpapered walls while still in his cot and has since moved onto much bigger and "better" things. We were forced to find mutually acceptable forms of discipline many of which simply weren't possible until the kids grew old enough to develop rudimentary reasoning abilities.

CHYNNA: Wow, Gavin. I can completely relate to you on both of your hurdles—the only difference being that my partner, Steve, stepped aside a lot because my kids rejected him. I seemed to be the only one who was able to calm them, understand their triggers and know how to deal with their ‘fits’. Having special needs children can definitely strain a marriage but it is admirable how you and your wife were able to stick it out through the tough times. Very inspirational. For you personally, what is the most difficult part in terms of day-to-day living or ‘surprises’ living with Aspergers? What strategies do you have in place?

GAVIN: The most difficult part for me is that constant feeling that I've offended someone. I spend my life "walking on eggshells" trying as hard as I can not to cross any invisible social lines. It feels like every time I let my guard down for a second and make a flippant remark intended to amuse people, I offend someone. It's also the case that whenever I'm talking to people, I feel like I'm not being understood. My brain is often going at a hundred miles per hour and I find myself "jumping tracks" and talking about details before I've given people an overview. Obviously this is completely at odds with my intentionally low-risk lifestyle because it makes me feel so uncomfortable. Then of course, there's the facial expressions. I have a lot of trouble reading them and I don't tend to use them to communicate. It's not unusual for someone to ask me if I'm ok when all I'm doing is not thinking about my facial expression. It's tiring work pretending to be neurotypical all the time.

My best strategies tend to be around limiting contact. It's a strategy which started at school but still continues in my working life today. If I'm in a meeting and I know the answer to a question or if I have a complete strategy for dealing with a given business problem, I'll often keep silent until everyone else has done their talking. Only then, if I think that the item still hasn't been covered, will I speak. Even then, it's often only to tell people that I'll "send them" the answers. I still rely on written communication much more than verbal because written communication allows me to be choosy about my words. It allows me to go back and clarify things when I realise that I've jumped straight to the detail and it allows me to be perfectly clear about when I'm using "slang phrases", versus speaking plainly. I also tend to develop close mentor-style friendships with my older colleagues and/or supervisors at work. They tend to give me clear signals as to when to "shut up" and far from finding these offensive, I accept them for the helpful signals that they are.

CHYNNA: That is so insightful. You know, I am also a person who is much more comfortable with written rather than verbal communication—for the exact same reasons! Thank you very much for that ‘inside scoop’. It helps us understand how the world feels to people with Aspergers or Autism when we allow ourselves to see things from their perspective. Can you describe to someone who doesn’t understand what Aspgergers is how it ‘feels’ so they can see the world through your perspective?

GAVIN: Since aspergers differs considerably from one individual to another, it's difficult to find a way to convey exactly how it feels. I guess that for me, I feel a kind of disconnection - as if I'm driving a robot-body around and looking through the eyes but that I just don't fit in with everyone else around me. Occasionally, I'll become over-stimulated and I'll have to find some way of escaping the sensory overload. It's not always possible though because sometimes it comes from within my own head. Sometimes my thoughts can get stuck on a particular track and I simply can't mentally quieten myself. In keeping with the "robot-body" metaphor, I can do a lot of things that other people can but somehow it's different coming from me. For instance, at school, I assumed that I simply ran the same way as everyone else because that's how it looked from the inside. In truth, my running style was (and apparently still is) laughable.

It's not all negative though. I can disconnect myself from reasonably high levels of physical and emotional pain. I can rewrite and revisit my memories in amazing full colour cinematic detail. I can memorise software product keys, entire sub-routines of computer code, 26 digit wireless access keys, ip addresses and more - though I often can't remember people's names, even the names of people I've known for years. I can shut out external stimuli and write software code for hours without moving and without making the slightest coding error. I can remember every single film I've watched and where I was when I watched it the first time. In meetings and lectures, I never need to take notes on procedures or technologies - it all just stays in my head.

CHYNNA: That is incredible, Gavin. I have such a greater understanding of what the world is like for you, and others with Aspergers. Thank you for the in-depth description. What is the most important thing you want people to understand about Aspergers?

GAVIN: Aspergers is a difference to be accepted, not a disease to be cured. The majority of people with aspergers syndrome do not want to be cured. They're happy the way they are and aspergers is a part of their personality which cannot be separated. The major issues that they face aren't caused by their "disability". They're caused by a lack of acceptance in our society.

CHYNNA: I completely agree with you and hope our readers take your words to heart. Do you have any pearls of wisdom to share with us?

GAVIN: The impact of my hearing loss on my life with aspergers is probably the most fascinating thing I've realised recently. There are two main ideas to take away from this;

Firstly, that sometimes reducing one of the most overloaded senses can reduce the stress on the other four and make it easier for people with sensory issues to cope. I know several people with autism who have taken to wearing ear plugs as a means of reducing their sensory overload. It seems to work.

Secondly, that while an IEP is the ideal starting place for helping your child through school, the truth is that any intervention is better than none. All early intervention seems to help in some way or another. It's clear that although my aspergers was undiagnosed during my childhood, the intervention I received for my deafness was sufficient to keep me in school. Some of the techniques I was taught, such as looking at a person's lips when they speak, actually provided me with the means to overcome common aspergers issues such as eye contact.

CHYNNA: Very valuable pearls there, Gavin. I particularly loved your analogy about how reducing one overloaded sense eases the others—Jaimie often wears noise-reduction headphones and they instantly calm my son, Xander. Isn’t that interesting? Please share with us any writing news or upcoming events you’ll have on your blog.

GAVIN: I guess the biggest upcoming event at the moment, is Hartley's fantastic "First things First" series which I'm thrilled to be a part of. It's a series aimed at helping parents of special needs children to remember to take time out for themselves.

In June, I'll be attending a two day "Special Needs in Scouting" seminar which includes aspergers and autism as its focus. I'm hoping to be able to write a series about how the scouting movement accommodates special needs children and why scouting is a good choice of after school activity for children with aspergers and high functioning autism.

Beyond that, I'm not really sure where I'll go. I'd like to get back to writing about children because my blog has been so focused on adults on the spectrum recently but I'm influenced by the comments I receive and at the moment, people keep asking about adult things.

We love Hartley’s First Things First series and I’m also proud and honored to be a part of it. Be sure to check out Gavin’s contribution on Hartley’s FTF series in June and do be sure to check out, and join, his amazing blog, Life With Asperger’s. We thank Gavin for joining us here on “The Gift” and know our readers have as well. Please come back again, Gavin!

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