Last night the boy was up to his usual tricks to postpone bedtime. He motioned toward the laptop computer (the “little computer”) and we told him no. He then proceeded to do something quite remarkable: he wrote on his wipe board.

Witl
Cop

I looked at my wife in astonishment and we corrected his spelling: Little Computer.
Then he began to write again:

Pliy

And we corrected again: Please.

We won’t make a habit of this, but we had to cave in this time because he had asked so nicely.

It’s been awhile since I’ve posted anything about my son. It’s difficult to think of exactly what to write about him, but I feel a sense of duty to air it out, to give a general update to family and friends and to publicize what it’s like to raise an autistic child.

He is almost 7 years old. Throughout this journey I have clung to the hope that someday he would emerge from his shell, that there is some key to unlock him from the prison cell of autism. But that hope continues to fade, especially when I see other children his age and younger. I can’t express how odd it is to see a 3 year old having a conversation with his parents. Yes, it is challenging because at that point everything is a negotiation, but at least the dialog is there. We never had that, and we still don’t. And it seems somehow inappropriate to even bring it up with friends who have children because I don’t wish to burden them with guilt for having normally-developing children.

His speech is improving, but by no means is he capable of engaging in conversation. For the most part, speech is limited to yes/no answers and basic greetings, and even those responses generally require some coaching.

His biggest joy is the computer and we’ve learned some lessons about what is appropriate. We’ve found that we can’t allow him to play arcade-style video games because his level of frustration with them will without exception result in violent tantrums. His need to finish things exists in direct opposition to arcade games that become increasingly difficult with each level and only supply a limited number of lives.

There are 3 internet sites that we have deemed appropriate for him: Starfall, Playhouse Disney, and PBS Kids. We’ve tried some educational software and he’s really taken with Reader Rabbit.

The general advice with autistic kids and computers is that autistic kids should not be allowed to play computers, or for only very limited amounts of time. Playing on computers does not promote social skills, which I fully agree with; however, for our son, the computer is the only thing that makes him want to vocalize. In a sense, the computer is for him a gateway to socialization.

As a baby, he did not coo the way that babies normally do. The vocalizations that I remember were mainly screaming when he wanted something or had melted down into a tantrum. While not socially appropriate, he has developed a strong vocabulary of computer noises, and over the past year this has blossomed into words through educational software.

So the computer has been a mixed blessing. While it can be extremely difficult to disengage him from the computer, it has helped him with math, vocabulary, and just recently, spelling.

He has become quite a counter of numbers and we have a bedtime routine in which he counts to 100 in lots of different ways while prancing in circles on his bed. He’ll count to 100 by 1s, 2s, 5s, 10s, and 25s. He sometimes gives a coy smile and says “Count to 50… by 50. 50!” Last night he started to count backwards from 100 by 5s but lost interest at around 45. He sometimes counts on his fingers, and I was recently impressed when he did so when counting by 2s and 5s. It shows me that he really understands that numbers relate to real quantities, rather than just memorizing the sequence.

He has become proficient in adding numbers and can write answers to simple math addition on a sheet of paper. In fact, his school teacher was recently impressed with his ability to do math, as it is a skill that seemed to crop up overnight. I think he had been steadily picking up arithmetic through Reader Rabbit which has several programs for counting money and solving math problems.

Reader Rabbit also has some spelling programs, and I am impressed that he can now sound out words and fill in a missing letter by the sound. At school, his teacher said he read a sentence from a book, which is pretty fantastic.

There are three areas where I wish we could improve: potty training, disengaging from the computer, and his bedtime/night routine. Yes, at almost 7 years old, he is still not fully potty trained. I think this has mostly to do with the fact that he doesn’t want to stop what he is doing to take a potty break. The result is that he will stand in front of the computer with wet, poopy pants. The worst is when he’s decided he doesn’t want to wear his pants anymore, takes them off without our knowledge, and stands around in his poop, sometimes scratching at himself and getting it everywhere. If we can catch him in the act, we can sometimes get him to go to the bathroom, but even then it’s a real battle to disengage him from the computer. While getting him to use the toilet is one issue, aim is another. Our bathrooms have a fairly nasty reek to them, of urine that has pooled under the toilet seat and around all of the nooks and crannies at the base of the toilet. I have recently become more militant about wiping everything down each day, but all it takes is a day.

Disengaging from the computer is an issue where we’ve just lacked some basic discipline. To be frank, the computer allows us to get a break, so it is easy for us to allow him to play while we do what we need to do to maintain sanity. But the price we pay is, as mentioned above, measured in dirty underwear.

The bedtime routine is another issue where we need to start enforcing some discipline. We have allowed him to rule the house at night: he won’t go to sleep unless someone is in bed with him, and he needs someone to be in the room all night or we’ll end up with an hour long screaming tantrum in the wee hours of the morning. We’ve allowed this to happen because it’s the only way we can get a halfway decent night of sleep, which we need in order to deal with him throughout the day. But after 7 years, this is getting old.

A few months back, word got out that traces of prescription drugs have been widely detected in our cities’ water supplies. A new study links pollution to hormone disruption in wild animals, and possibly humans, which manifests as developmental problems in males.

According to the aforementioned article,

Wildlife and people have been exposed to more than 100,000 new chemicals in recent years, and the European Commission has admitted that 99 per cent of them are not adequately regulated. There is not even proper safety information on 85 per cent of them.

It is difficult not to link this study with the explosion of cases of autism over the last two decades, but I will not go that far as I realize that correlation is not the same as causation.

I believe that the underlying causes of autism are manyfold and consist of a genetic predisposition combined with environmental factors, and that the growth in the number of cases has much to do with our growing understanding of autism and better diagnostic procedures.

From that perspective, it is worth considering that exposure to these chemicals may be one of the environmental factors that contribute to the development of autism.

Here’s an infotainment device that gauges your position on the autism spectrum.

Last night I scored 37 (very high). I took it again today and put more thought into my responses and scored 35 (not as very high).

The autism spectrum quotient

While it’s all fine and dandy to approach autism as a facet of neurodiversity, there is an ugly side for those of us who care for the neurologically diverse. While our child is nowhere near as difficult as the one described in this article, the author captures the challenges faced by the caretakers of autistic minds.

Wired has an article describing researchers who approach autism as a neural differentiation rather than a neural disorder. I agree with the approach and I hope it leads to better methods of communication and better social acceptance of those with autism spectrum disorders, or I should say autism spectrum differentiations. Read the article here.

Another interesting internet path is to Google neurodiversity. There is something of a civil rights movement brewing for those on the autism spectrum.