Saturday, February 25, 2006

The Door to the Outside

It is with some sadness that I must announce that this will be my last regular post to Gone Gaming. I have enjoyed contributing to the site and being a part of this excellent group of people, but at the same time I have always been aware that my table time has never been sufficient to provide material for a biweekly column. My desire to write is fueled by the enthusiasm generated by gaming, and without this spark the exercise feels less like a stroll through a pleasure garden and more like a forced march through a desert. During these months that I have been part of "the staff" here I have always hoped that this situation would improve, but, in the end, life is what it is.

It occurs to me, though, that I am in the fortunate position of (theoretically) having an audience, and so there is an opportunity in my hands to send out a message about something which I think is important. It doesn't have much to do with gaming, unfortunately, but I hope you'll bear with me anyway; while it may turn out to be meaningless to some readers, for one or two it may be the word of warning which helps them to brace themselves before a storm.

The easiest way to begin is to talk about my son. My son is now six years old and is an active, happy and loving boy, one who likes to go on hikes, play with his cars and trains, mess around on the computer, go to the movies, jump on top of his Dad, and lots of other little kid stuff. He is learning to read, he likes to play music, and he recently surprised me by counting to one hundred and ten. However, in the time leading up to his second birthday, we began noticing that something was different about our child. He still only had a few words, and was unusually uncommunicative for his age; he often did not respond to his name or look up when someone entered the room, and he seemed to not have very much interest in the people around him; when excited he would arch his back and flap his arms in a repetitive way; he did not "pretend play" with toys but would instead sort them or line them up; and when in a high-stimulus environment, he could not settle down and play but would run around wildly in circles. We took him to see a developmental pediatrician, and she diagnosed him with Autistic Spectrum Disorder, or ASD.

Every year, an increasing percentage of children are being diagnosed with ASD, a permanent disability which affects sensory input, language development and social relatedness, and which is also often associated with over- or undersensitivity to stimuli, rigid routines, and repetitive behaviors. In some cases the effects are mild, and in truth there is no clear boundary between the mild end of ASD and the shy or quirky end of normalcy. In other cases the effects are devastatingly severe, with individuals who cannot care for themselves independently, individuals unable to communicate by speaking or even pointing, and individuals who can become panicked by the ordinary sights and sounds of the everyday world. I hesitate to speak of statistics, as they tend to elicit as much suspicion as alarm, but according to the American Academy of Pediatrics and the Center for Disease Control and Prevention, ten years ago the rate of children being diagnosed with autism was 1 in 2,500; today, that number is now 1 in 166, making it more common than pediatric cancer, diabetes, and AIDS combined. In California, the number of people treated for autism by the State Department of Developmental Services in 1993 was 5,000. That number is more than 26,000 today.

Some have contended that this sharp increase in the statistics has more to do with the frequency of diagnosis than an actual increase of symptoms, and it is true that physicians have begun casting a wider net as they have gained more understanding of the disorder. Previously the definitions of Autism and Asperger's Syndrome* were rather narrow and only included those individuals affected most severely; now doctors are coming to view the umbrella as being a much broader one. The 'spectrum' in Autism Spectrum Disorder refers to the fact that, unlike other developmental syndromes, not all individuals share precisely the same symptoms to precisely the same degree, but rather will have a sigificant number of common symptoms from a cluster that has been recognzied as being autism-related. One child might be non-verbal while another might talk a blue streak, but both might have difficulty with social relations, have sensory defensiveness, and engage in repetitive behaviors. Regardless of the change in definitions, however, the fact that the problem is growing, and quickly, is very real. Talk to the parents, educators, and pediatricians in your life about their experiences; things are quickly reaching the point where everyone knows someone who knows someone who has a child receiving services for developmental delays associated with ASD. Compare that to your own memories of childhood. Certainly I had never heard of autism as a youngster, and speech therapy was for kids who stuttered. And now? I can tell you this: not only is my son not the only kid in town with ASD, and he's not even the only kid in his grade.


What This Means to You

The reason that I am writing about all this today is that a great deal can be done to help kids with Autistic Spectrum Disorder if it is recognized early and if they receive early intervention through therapy. Children are in development-hyperdrive in the first years of their life, and for them to be missing pieces to the puzzle early on has a snowballing effect as time advances, leaving them further and furher behind their peers with each passing month. A lack of relatedness at one and a half leads to or exacerbates their difficulty with language at two and a half, and their difficulty with language at two and a half leads to a lack of real-world knowledge at four that further widens the chasm between themselves and those around them. Furthermore, obsessiveness and rigidity of habits can become a serious problem for individuals with ASD, and the sooner parents nudge these kids down the road to becoming flexible, the better. The refusal of the character of Raymond to buy his underwear anyhwere but K-Mart in the movie Rain Man is not an exaggerated picture of a person with autism; if anything, this character adapted perhaps a little too quickly for someone who had been institutionalized for his entire adult life.

As emotionally difficult as it may be—it's hard for us parents to consider that anything might be awry with our children's development—it is very important for new parents and parents-to-be to be aware of the early signs of autism in children. Typically these start manifesting at some point between eighteen months and two years of age—though some say they can be caught as early as twelve months—and they include such various things as a failure to respond to their name, lack of attention to other people's faces, difficulty transitioning from one activity to the next, lack of ability to engage in shared play, and lack of or loss of words. Much more detailed information can be found here and here.

For those who already do have a diagnosis, I recommend investigating Relationship Development Intervention. This approach is based on the theory that people with Autistic Spectrum Disorder are missing key, low-level, but teachable skills that involve interpersonal relatendess and dynamic thinking. I feel strongly that this is a worthwhile approach and that it has helped bring out the great potential in our son; in the early days he was so disengaged that my wife and I feared that he would never be able to share looks, smiles and laughter with us; now he leaps into our arms, gazes lovingly into our eyes and giggles hysterically as he tells us one of his idiosyncratic jokes. Traditional thinking about autism is that these individuals are incapable of complex social interactions or else simply abhor them; RDI's approach is that these things can be taught, and that once the individuals get started down this path, they want to learn.

In addition, I also suggest that parents investigate the biomedical routes that are available, specifically with a physician who is involved with DAN. Research is finding that children on the Autistic Spectrum tend to have issues with digestion, nutrion, allergies, inflammation and detoxification, and while there is no magic bullet that will cure autism, we have learned some very surprising things about our son while investigating this side of the problem, including his allergies to many common foods and a propensity towards severe systemic yeast infections. It is important, however, to use a consumer's discretion when investigating this route, as there are likely to be a certain number of care providers whose enthusiam or salesmanship outstrips their qualifications and who are only kept in business by the desperation of parents.

On the subject of the biomedical aspect, I should mention that there is a vocal contingency of people who believe that there is no evironmental influence at play in autism whatsoever and that the condition is genetic, end of story. The Wall Street Journal in particular has been very careful to always take a dismissive tone towards the idea that this is a situation that could have been avoided. If one were sufficiently paranoid, one might wonder what interest a financial daily has in editorializing about autism. All I can say is that parents should listen to both sides of the argument before they decide what course they will take in treating their children.

One other thing I'd like to mention is that the American Academy of Pediatrics recommends that children under age two watch zero television. Now, there is no proof that TV, computers or other electronics play a role in autism, but infants are freaky little sponges, sucking up information at an impossible-to-conceive rate, and I often wonder if the inexorable logic of electronic toys and computer programs (and their recent tendency to focus on abstractions such as numbers, patterns and shapes, even when targeted at children of an age for which that content is not appropriate) and the precise, unnatural repetition of experience via DVD or CD exacerbate autistic children's overdependence on static systems (predictable, mathematical, unchanging) versus dynamic systems (relative, indefinite, human).**


Good Things

We've had a tough road, no doubt, but our boy has surprised us by his readiness to rise to every challenge. Once he was a child closed up inside his own world, distant, aloof, shut off and disconnected. My wife and I worried that he would never open up, never be able to share a smile or a laugh with us, never reciprocate the love that we felt for him. However, with a lot of hard work on our part, and even harder work on his, we have a happy, laughing boy who rushes into our arms for hugs and kisses, who tells us his thoughts and feelings when he has the words to express them, and who will take my hand, drag me away from the computer, and say "Daddy, come and play." Many challenges remain: his language skills and social skills still need a lot of work, he continues to be challenged by sensory issues, some rigidities and obsessions still linger, and he is only taking the first tenuous steps towards interacting with his peers. I have found, out, however, that there is one social activity of which he is extremely fond, evidenced by a photograph sent home from school; in the picture my son can be seen relaxed and one of the gang, lying on his belly in among a tight circle of little kindergarten kiddies all centered around...Candyland.

Thanks to everyone who has read and commented on my stuff here at Gone Gaming. Hopefully I'll be able to contribute an article now and then. So, until next time, be sure to keep the door to the outside open.


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* Aspberger's Syndrome is a name for a particular manifestation of ASD, once thought to be a separate pathology from Autism but now considered part of the spectrum. It is characterized by high I.Q. and strong verbal skills, though the other deficits of autism, such as underdeveloped interpersonal skills and difficulties with dynamic systems, remain.

** The difference between a static and a dynamic system in this context is that the rules of a dynamic system can evolve whereas in a static system they do not. A casual conversation is a dynamic system because, among other things, topics can change, there is no set ending point, and even the roster of participants can change mid-stream. It is still a system and not a random phenomenon, however, because, even if it is not predictable, it is guided by a collective train of thought, social cues and the judgment of the participants. For example, in the middle of the conversation one of the group may notice that others are behaving in a distracted and listless fashion while a topic is being discussed and so, even though that person might have more to say on the topic, he will allow the flow of conversation to go off on a tangent to keep the entire group engaged. Another person may adopt a tone of levity on a subject, and, depending on whether the group reacts with smiles or uncomfortable fidgeting, will either continue with the jest or drop it. In contrast, games are generally static systems, as players typically cannot decide to change rules mid-game, they cannot walk away and then rejoin the game twenty minutes later, and they are not supposed to change their goals halfway through (for example giving up on gathering victory points and instead trying to make a pleasing pattern on the board with their pieces). However, there are often dynamic systems associated with games, for example negotiation, psychology, metagame, and of course whatever tangential social interactions are going on during the gaming.

9 comments:

Todd B. said...

I know full well what it is like. MY 9-year old has Aspberger's Syndrome (recently diagnosed after 2 years of trying to figure it out). It's not always an easy road - his school is having a hard time dealing with it, and really don't seem to really "get it" as to what an ASD really is all about. His current teacher has basically labeled him a problem/violent child who is just manipulating everyone.

I wish you good luck - it sure sounds like you have a good handle on things and I trust it will turn out well.

gamesgrandpa said...

Joe --

I sincerely hope your son's development continues along the path you have described. All of you deserve every accomplishment, as all of you certainly are working hard to reach those goals. I am so impressed by the care and attention you and your wife so clearly are giving to your son and his difficulties.

We have friends who have a grandson with a different problem -- Down's syndrome, and they and his parents are very involved with his development and with integrating him into society. It is very inspiring for me to see people like them and you, who take such a positive approach, and who, therefore, make such a difference.

Thank you for sharing all this information. Like you, I hope someone else will benefit by reading it.

I will very much miss your contributions here and elsewhere. I hope you will continue to comment on games articles, and I also hope you will share with us notes about your son's progress. You are in my thoughts.

Gerald McDaniel

Melissa said...

Joe,

thankyou for sharing this very personal article with us. Charlie is very lucky to have such wonderful, dedicated and involved parents.

We'll miss your articles here, and hope to 'see' you again soon.

Anonymous said...

Gamer Matthew Baldwin wrote of his own recent experience with his child and an ASD diagnosis:

http://www.defectiveyeti.com/archives/001457.html

He once joked about writing a book for worried parents titled, "Your Child Is Perfectly Normal." But alas, it seems the children are increasingly abnormal. One hopes that maybe we can figure out why.

Wishing you positive outcomes.

BilboAtBagEnd said...

Joe, thanks for sharing your son's story. The information there is important for parents, and this article was a very good one.

I hope everything goes well for you and your family (I think it will, but always good to wish luck!). I have enjoyed all your articles, here and previously on BGG, and think it's great that you could spend some time on Gone Gaming.

Jonathan said...

Joe,

Thank you for sharing. With such great parents, Charlie is a lucky guy. It sounds like you are doing a great job and your post could well help those in similar shoes trying to figure out this increasingly common situation.

Take care and know there is always a chair at the table for you and your family.

Shannon Appelcline said...

Joe,

Thanks for posting about that. There's been an increased publicity about autism in media in recent years, from _The Apprentice_ to _The Shield_, but I appreciated your sharing about it in a much more personal way.

qzhdad said...

Joe,
I wish you the best in your journey. I look forward to reading your links. We are 10 years further down the road with our ASD child/young woman. We spent several years getting to the (hopefully) correct diagnosis of ASD after years of, "It's ADHD with a twist," or "It's LD with a twist," etc. Fortunately, we started the speech/interaction therapy early and later discovered a physician that has been dealing with exactly these children for over a decade. Exactly the "problem" of which he warned us is taking place. She is getting closer and closer to a "normal teenage girl" with all the problems associated with that.
We're (usually) happy to have them.

Joe Gola said...

I appreciate the kind thoughts and encouragements that people have posted. It means a lot.

One more thing I'll share as a postscript is that my son really must be a gamer at heart, because he's already sick of the randomness of Candyland and now will sift through all the cards beforehand and stack his own little deck to draw from. I gotta hand it to him, it makes him pretty tough to beat....