April is National Autism Awareness Month

So I've decided to give up computer programming to seek enlightenment in the Himalayas...

Heard that one before eh? Yeah, I know, yesterday was April Fool's Day. How ironic then that today is World Autism Awareness day or much less that the month of April is National Autism Awareness Month here in the US. I say it's ironic because people with Asperger Syndrome generally dislike practical jokes. ;) Anyway you're likely to hear a lot of talk about autism in the next few weeks. My recommendation? Talk to some folks who are autistic, who live with the condition every day. Find out how they feel about it and what they would like you to know about it. A lot of them will help you out here by blogging - including me. :)

I've been very public about my diagnosis since I received it last year and I'd like to talk some about the specific reasons why I've chosen to be so public about my condition.

Actually technically I was diagnosed twice - once by a psychologist in Portland Oregon in 2007 and again by a neurologist in Boston in 2008. I received the neurological testing because of a concern that the psychologist's diagnosis might not be enough proof to address some legal issues I've had related to child support. Why do I have legal issues related to child support? Didn't I want to support my kids? All three of them, absolutely, unequivocally, every day I wanted to support them. I wanted to be with them, and now I can. I've moved back to Texas, but the one ongoing problem caused primarily by my autism is these legal issues related to my child support. In some ways I've done really well for myself professionally, since I've managed to become an Adobe Community Expert for ColdFusion in spite of not having any college degrees. And given what I know now, I'm also rather surprised that I've managed to get so many people interested in the open source projects I've initiated. Or that I've been able to do so well giving presentations for people, even if my presentation skills still need work. :) And that just leaves one thing: income. Having friends and fans and being on people's short-list to help them with their technical challenges is certainly nice, but at the end of the day it doesn't pay the bills. And unfortunately in this country, the government refuses job loss as a justification for being unable to pay child support. The end result being that after nearly a decade of working my ass-off to get fired from one job after another because of my difficulties fitting in, I now have a big back-log of child-support debt.

Now some of you might be thinking, "shut up man! You're digging yourself into a hole!" Would you want people to know if you had child-support debt? Probably not... and the honest truth is that I think I'd rather not either. But I'm telling you all now because I'm committed to an ideal of making the world a better place for those who come after me.

Much like software, autism involves a bit of a learning curve. In fact the learning curve for autism may be even steeper than for software engineering. Until you know what to look for (and maybe even after), the symptoms of autism are rather ambiguous. This is probably partly responsible for the fact that I didn't receive a diagnosis until I was in my early 30's in spite of a growing body of information about it since before I was born. When I was a child I did something that concerned my mother. I sat. And I stared. And I didn't make noise like other babies. I was a "happy baby", contented to sit and stare at a baby book for several hours at a time, without moving. This is highly irregular - most babies crawl around and get into everything, but not me. Had the public been more aware of autism at the time, I might have been diagnosed as a toddler. Instead my mother took me around from one doctor to another, never receiving any satisfactory information about how to help me.

I honestly can't blame my mother, or for that matter even the doctors. It wasn't until '94 I think that Asperger Syndrome (my specific diagnosis) was even added to the DSM. The reality is that it takes time for information to reach people. I was lucky and I managed to tough it out through the challenging kind of childhood we have on the spectrum and I forced myself to become more social at an early age. I was semi-aware that I would need to be more social if I wanted to get anywhere in life, so I pushed myself to do that. And although I haven't achieved everything I've set out to achieve, I believe it's served me well. Still, it's impossible to really describe the weight that was lifted from my shoulders when I received my diagnosis in 2008. As I mentioned before, fitting in had always been a challenge for me and receiving a diagnosis of an Autism Spectrum Disorder (ASD) gave me new tools to face that challenge. It's like being lost in a strange wilderness and suddenly finding a compass.

I recently finished reading the book Blink by Malcolm Gladwell. I'd been looking forward to reading this book for a while. I hadn't expected it to contain information about autism, but there it was. What was most interesting to me in this book was information about research done by a scientist named Paul Ekman who spent many years studying facial expressions. And here is a key element of the difficulty I've had fitting in. People read minds. I don't, but other people do. It's a natural, instinctual ability that people have, and it depends greatly on a portion of the brain called the fusiform gyrus that's responsible for interpreting facial expressions. In autistic people the fusiform gyrus is underdeveloped, which is why I often forget to make eye contact with people. So when researchers put autistic people in an fMRI and showed them pictures of faces, instead of finding activity in the fusiform gyrus they found activity in another part of the brain that's normally reserved for inanimate objects. And when they studied where autistic people look when they're watching movies they found that we don't look at actors' faces - we look in all sorts of places on that big screen, pretty much everywhere that nobody else is looking. ;)

This is hugely important in everyday communications. Reading facial expressions is a big part of how you can tell the difference between sincerity and sarcasm for example. This lack of face-reading is also why we're often so literal, because we don't see or understand the layers of context that you express when you speak. I was talking to Tiffany the other day and all of a sudden I heard her say, "is there something wrong with my shirt?" It turns out that although I was tuned in to the conversation, I wasn't making eye contact. She was looking at my face and I was staring intently at the buttons on her shirt. This is the kind of thing you'll find autistic people doing often and it tends to cause some challenges in communication. As an example, I was really glad that I wasn't talking to a female co-worker at that particular moment. ;)

Luckily for me, Ekman has published his research on facial expressions, which gives me an opportunity to learn a challenging new skill: ESP. :) Seriously though, it does give me an opportunity to learn a skill (and I expect a challenge) that will help me improve my social skills in the future.

I'd like to take another short detour here and talk about neuroplasticity and how it relates to the subject of autism. People have noticed for many years, since probably before we even knew anything about the brain, that a person who loses their hearing or their eyesight gains acuity in other ways. If you lose your eyesight for example, typically your hearing becomes more acute. There are regions of the brain devoted to each of these sensory systems and when one system fails, attention is then diverted to another system and this causes the plastic brain to grow more in that area. So you could think of this mind-reading ability kind of like the ability to see. They're both provided by a specific region of the brain - vision is processed in the visual cortex and face-reading is processed in the fusiform gyrus. So when the fusiform gyrus is underdeveloped, other areas of the brain have to receive the attention that would normally go there, and this may result in more analytical processing, because logical puzzles are less influenced by social feedback. Don't get me wrong, social influences are great -- in fact, they're necessary, that's why we have them. :) But this is the reason why children with Asperger Syndrome are sometimes called "little professors" or why the condition in general is called "the geek syndrome".

Within the autism community itself there are actually different opinions about the condition. Something that I've personally found particularly interesting is that the older a person with autism is, the less likely they are to desire a "cure" for their own autism. I'm 34 and I honestly don't feel like I need a cure, and even if there were a "cure", in spite of my job history, I wouldn't be jumping to get it. Would I consider it? Yes. I would read all the information available about said "cure" and make a rational, informed decision about its risks and benefits. And that rational informed decision might very well be "no, it's not something I need and/or it's not worth the risk." If you spend any time reading the threads at Wrong Planet it wouldn't take long to discover that the people who are really struggling the most, who are the most adamant about wanting a cure (and now, dammit), are people in their teens to twenties. By the time people are in their 30s, they've usually found some way of living and relating to others that works reasonably for them and no longer feel the needfulness for a cure. In fact by the time they hit 40, most of them simply don't want a cure - period. Not only have they found a way of life that works for them, but they actually like the lives they've made for themselves. Autism is not the end of the world.

You may be aware that the population of people with autism is growing. Here's something you might not know. The fastest growing population of people with autism in the US is in silicon valley. This might be for a number of reasons. For all we know right now it might merely be due to greater awareness of it in that area compared to the rest of the country. Sure you and I know about autism, but how common is this knowledge in rural areas? On the other hand, Professor Simon Baron-Cohen, the foremost leading expert on autism in the UK has said that their research has linked autism to systemizing genes... which are in great supply in people who take systemizing jobs like ... oh... I don't know... computer programming perhaps? ;) Actually not just computer programming - any kind of engineering, natural sciences in general and especially math. So it is that you tend to see a history of engineering in a family where you find people diagnosed with autism. Moreover and more importantly, many of the personality quirks of autistic people are also common amongst people in these professions who are not diagnosed with autism. The upshot of this may be that even if you don't know anyone who's been diagnosed with autism, having a better understanding of it may help improve communication for you if you work in one of these kinds of jobs, which, if you're reading my blog I'm guessing you might. ;)

So raising awareness is good, and I feel I've done a decent job of it thus far. And that leads me to our reasons for raising awareness. We do this because we want to make the world a better place and to do that we need to do more than raise awareness; we need to also take action. So what actions can we take to improve the lives of people with autism and their families? There is of course the obvious: donations to autism charities. There is a lot of research being done, and you could choose to donate to it and I think it's a fine thing to do. If you choose to make a donation, I would encourage you to donate to organizations that include people with autism on their board of directors, such as GRASP and ASAN.

Whether or not you make a monetary donation there are other things you can do that may be equally important or in some cases even more important. There may be ways that you can directly help people you know, and it may not even cost you anything. My very first suggestion is this: seek out the autistic people in your life and talk to them about it. Ask them how they feel about autism and how they would like to be treated. This is the most important thing you can do, but remember that the answers aren't always the same. Each person may want to be treated differently, for example, some of us prefer to be called "autistic people" and others prefer to be called "a person with autism". I myself prefer "autistic person" because I'm also a "short person". Being short may have also affected my career, but it's easier to say "I'm short" than it is to say "I'm a person of small stature". So I'm not bothered by the descriptive term. Others prefer "a person with autism" because they want to be considered "a person first". Check in with your friends or family on the spectrum to find out from them what their feelings are.

Here's another thing you can do - you can tell them about Paul Ekman's research on facial expressions and his books: Unmasking the Face and Emotions Revealed. If you're feeling generous, buy them a copy, although you might want to ask them first.

Here's something I'm doing and with just a few minutes of your time, you can help. :) One of the biggest challenges for people with Asperger Syndrome in particular is securing good stable and meaningful employment. So I've started a project to address this issue specifically by creating jobs for people with Autism and Asperger Syndrome. Come visit the AutLabs website. There you can contribute to our awareness campaign through twitter, through blogs or just by expressing your feelings about the project and why you feel it's important to create these jobs. You don't have to donate huge amounts of money or time, every little bit helps. :)

Thanks for visiting,

God bless!