Life with Autism

I met with Timothy's psychologist/behavior analyst yesterday.

I went by myself because I wanted to talk about what the future may hold for him and us. I wanted to cover the whole range of possiblities, from best case to worst case, and my wife has said that she just isn't up to talking about worst case.

It was not a fun experience. I'm not going to post all the bloody details here, but the short version is that on the current path, in Timothy's adolescence he is most likely going to require constant 2-on-1 supervision. She said that she could envision it being necessary by the time he reaches 6th grade.

That won't be possible in our home. Which means to keep every safe (mostly Timothy, it's far more likely that he would endanger himself than hurt other people) we'd have to place him in the care of the state.

I'm very distressed about that idea. But I have to admit that I sometimes suspect that Timothy would be better off not living with us--it's extremely difficult for us to provide him with all the things that he needs (not to mention providing our older son witha ll the things he needs). My wife is not able to even discuss the possibility of him not living with us. For her, she can contemplate him going off to live in a group home when he turns 21 (or maybe 18), but anything before that is to horrible to even think about.

I talked with the psychologist about what we need to do to maximize the odds that Timothy will be able to live with us until around 18. She said for that to happen without significantly endangering him, he needs several years of all his time and activities being extremely rigid and structured, so that he really has no alternatives but to do what we want him to do. Without that she doesn't think that he will learn to communicate effectively or to moderate his extreme impulsivness.

The big problem is that while a very rigid, structured lifestyle would be really good for Timothy and probably for Jason as well, it would be really bad for my wife. So bad for her, that I don't think she's able to do it, at least not as our life is now. So bad for her, that I'm not sure that she could even let someone else do it. We're working on toliet training Timothy, and the process is very rigid. Once you take him into the bathroom to start a session, you don't take him out until he has urinated. It's working--he's urinated into the toilet about 10 times now. But sometimes you have stay in the bathroom with him for over an hour. So far my wife hasn't taken him in to use the bathroom. Staying in there with him for a long time while he is whining and crying is too hard for her. She has also tried to get me to let him out without going during some of the longer session (generally whenever it goes over an hour).

If the psychologist is right, and my gut instinct is that she is right, Timothy isn't going to make much progress without the rigdly structured environment. I'm not sure how we can provide that environment if my wife is at home with him all the time. She's said many times that she doesn't want to work full time, she needs (for her own sake) to be highly involved in Timothy's care.

I don't know how we're going to resolve the contradictory wants and needs. Right now my wife is so overwhelmed and exhausted she isn't really able to work with me to try and figure it out. We really need to talk about what tradeoffs we're willing and able to make in service of the goal keeping Timothy in our home until he is an adult. And at the moment we can't. I hope we can before it is too late and all of our options are gone.

For the 4th of July, we went up to my in-laws place on Camano Island. As so often happens when we go out somewhere, I spent much of the time following around after Timothy, trying to keep him out of trouble (and danger). As I was roaming around the neighborhood, trying to keep Timothy off other people's decks and from pulling up flowers or putting a handful of rocks in his mouth, I found that I was angry. Much more so than usual.

Later we went over to another house for cake and home-made ice cream. I spent twenty minutes trying to keep Timothy from climbing into (or drinking out of) the wading pool in the back yard. Then I went in and told my wife I was tired of trying to keep him out of the pool and it was her turn to take over.

Later, we set off firecrackers. Timothy actually seemed to enjoy it. I was expecting him to run away from the noise, but he stuck close and watched the fireworks pretty closely. I was really struck by the unfairness of it all, and the extra burden that we're stuck with. I didn't get to talk with people much, because I had to follow him around all the time. Normally, kids that require this much supervision aren't this mobile and can't wander as far, climb over as many things, and get into as much trouble on their own.

Locks play a big part in our life these days.

Because Timothy likes to pour water all over things (and because he occasionally drinks from the toilet), we have to keep the bathroom doors locked most of the time. This poses a problem for Jason, because he has trouble unlocking them from the outside. The big bathroom has the kind that you can open with a coin, but the smaller bathroom you have to poke something into a very small hole.

Timothy is also fond of throwing things, and carrying random objects around the house and yard and just leaving them there. Because of this, we really don't consider something put away unless it is behind a lock. We've replaced all but one of the bookcases in our house with cabinets with doors on them, and we have child-safety locks on all the doors. I have my clothes in a wardrobe, and we had to put a lock on that door. Otherwise Timothy will open up the wardrobe, take all my clothes off the hangers and throw them on the floor.

This week Timothy has finally figured out how to open the deadbolts on the front door and the door to the garage. I already had a sliding bolt installed way up at the top of the front door, but I don't have one on the door to the garage yet. Four times on Wednesday I had to run out into the driveway and bring him back in after he unlocked the door, went into the garage, opened the garage door, and went outside. Putting a sliding bolt at the top of that door is at the top of my list for weekend chores.

I don't know what we'll do when he figures out how to drag a chair over and open that bolt too. We may have to put a key lock on the inside of the house. I'm hoping it won't come to that--it would make it hard to get out of the house in case of a fire--but I haven't come up with a better idea yet.

Timothy is OBSESSED with water right now. More specifically, he is obsessed with pouring water. He loves to pour water from one glass to another, or to pour it in the sink, or the bathtub, or the toilet, or a plastic tub. Or to pour it on the floor, which is somewhat of a problem.

A few weeks ago, Timothy woke up very early one morning, about 4 a.m. My wife kept an eye on him for a while, then around 5:30 she woke me up. I went out into the living room. I sat down on the couch and promptly dozed off. A while later I woke up to the sound of water being poured on something. By now, I had learned to recognize the sound of water being poured into the kitchen sink, the dishwasher, the toilet, the bathtub, the bathroom sink (which is enamel rather than stainless steel, so it sounds different than the kitchen sink), a plastic tub, and the floor. This wasn't any of these sounds, so I decided that I needed to get up and see what was going on.

I walked into the kitchen and found Ethan standing on the stovetop (we keep the knobs in a locked drawer so that he can't turn it on) pouring water into the big pot we use for spaghetti. We'd had spaghetti for dinner that evening and hadn't cleaned up the pot. My sleep-addled thought process went something like this--water, water into big metal pot, pot holds water, water won't go onto floor, ok, I can still sleep. So I went back to the couch and lay down again. About half an hour later I woke up again to the same sound. I went back in the kitchen, and this time the pot was about an inch from overflowing. So I dumped all the water into the sink, and set the pot down inside the sink, so that if it overflowed it would run down the drain instead of all over the stove and onto the floor.

Timothy's water fixation has done some minor damage to the house now. We need to replace the backsplash behind the sink. The caulk on the bottom is fine, but there wasn't any caulk around the top, and Timothy pours so exuberantly that he splashes the water onto the top. We've gotten enough water behind the backspash now that it is starting to warp. I hope we won't find too much mold or mildew back there when we tear it out.

I've also learned to recognize several additional pouring sounds now: water being poured onto a plate, a cookie sheet, and in a cereal bowl. We have to be really careful about leaving half-drunk glasses of water lying around. We also keep the bathroom doors locked all the time. A few weeks ago one of my friends helped me replace the cut-off valves under the kitchen sink. Now we turn the water off at the sink before we go to bed as well.

Another piece that I wrote in August of '05. If I remember correctly, I wrote both of these pieces on the airplane coming back from this trip.

I've been traveling this week for work. During my first day of travel I twice found myself seated next to small children. Once across from a little girl who was about 2 1/2, and once next to a little boy who was 10-12 months old. In both cases I ended up playing imitation games with them.

The little girl was smacking her lips together and making a popping noise. I started smacking my lips together as well. She was enchanted, and spent the next 10 minutes smacking her lips and then looking to see if I would copy her. When I did she'd give me a big grin and then look up at her mother, who would comment about what a silly man I was. When they were leaving the mother asked if I wanted to come along on their flight and entertain her for the next 3 hours. The little boy shook his head once while he was looking at me. I shook my head back at him, which he thought was amazingly funny. He shook his head again to see if I would continue to imitate, which I did.

That evening in my hotel room, I was thinking about those children. I had a lot of fun playing with them. It was so easy to get them to pay attention to me and interact with me, and they were eager to play imitation games. It was so unlike my own children. As a young child Jason had a limited range of interactions. Timothy still has an extremely limited range--he'll play tickling and wrestling games, but it's extremely difficult to get him to play with a toy with you, and he virtually never imitates what he sees someone else do. His preschool teachers say that he actively resists their attempts to get him to imitate.

My brother and his family visited us over the 4th of July. Will, their older son, is just about the same age as Timothy. Will and Jason had a great time playing together. Will followed Jason around and was very interested in doing what Timothy did. It was wonderful to see Jason interacting so positively with Will. But it was also hard, because if Timothy didn't have autism, them Jason and Timothy could play together that way all the time.

It is saddening to think about the simple pleasures of playing with my children that I've missed. I know that my wife feels that pain more often and more intensely than I do. That's not surprising given the larger position that the boys occupy in her daily life. Playing with those two kids in the airport gave me a closer glimpse into her own personal experience of the loss we've experience from the boy's autism.

I originally wrote this in August of '05. We're still going to Cub Scouts. Jason and my wife are going to "Mom and Me" camp in April.

A couple of weeks ago Jason and I went to Cub Scout camp for 4 days and 3 nights. Jason was really exciting about it. A month earlier we had gone to an overnight camp with the Pack. The overnight camp was out at Fort Flagler State park, sleeping on bunkbeds in an old Army barracks with running water and flush toilets. The four day camp was a different sort of affair--sleeping in tents and using outhouses.

The first afternoon during the after-lunch quiet time we parents started talking about our other children and I mentioned that Timothy has autism. Upon hearing that, Jason piped up "And I have Aspergers!" That led to some questions about autism and Aspergers Syndrome. I told them that while Jason is very bright, he has a lot of trouble understanding social interactions and what to do in groups.

The next day, after dinner, the Boy Scout camp staff led sessions about how to do skits at campfires. They talked about the importance of facing the audience, how to introduce your skits, and most of all, to speak loudly and with lots of ENTHUSIASM! Later that night we had a campfire. The camp staff starting asking for volunteers to do skits. Most of the other boys had been practiced skits that they wanted to do. Jason hadn't practiced any skits, but his hand shot up. I got a worried about what might happen--Jason doesn't know any cub scout skits. After each skit they'd call for volunteers and Jason would throw his hand up and wave it around. Eventually they picked him. He walked up to the stage area. He faced the audience and said loudly and clearly "This skit is the beginning of a story that has already been told." He raised his arms up into the air and sang the opening bars of the Star Wars theme. Then he said "Star Wars Episode I, the Phantom Menace," and went back to his spot by the fire and sat down.

I felt a little embarassed. I mean, how geeky was that, to get up and sing the Star Wars theme song? But after the fire when we were getting ready for bed, one of the other dads said to me "That was so cool to see Jason get up there like that! That's fantastic!" The next morning another parent commented about how proud she was of Jason when she saw him get up there. And I realized that they were right. Jason had stood up and braved the unknown.

Jason had a blast at camp, but I could tell it was very stressful for him. He stayed right by my side the whole time, and frequently would pull back for something and say quietly to me "I don't know what to do." There were a lot of uncertainties, but Jason was able to keep going and stay engaged with the program. With some prompting and support from me, he was able to participate in all the structured activities. By the end of the weekend Jason was asking "Can we come again next year?" and wondering what next year's camp activities would be.

Camp ended on Tuesday. On Wednesday I was talking with a friend about the experience, and how happy I was to see that, even though it places extra stress on him, if his mother and I make the extra effort and provide the support he needs, Jason can have the same experiences that a typical child would have, like cub scout camp. My friend pointed out to me that no matter what, Jason is going to require extra effort on our part, just to cope with the impact of his disability. So it makes a lot of sense to direct that extra effort into something that provides positive benefits for him.

That got me to thinking about how Scouts is a really good environment for Jason--the rules and expectations of behavior are explict and clear. All of the parents involved make an effort to make sure it is a good environment for the boys. Jason had been instructed on how to give and good skit and he'd gotten up in front of everybody and followed those instructions to the letter. I have a feeling that I'm going to end up with a scout leader uniform of my own. I've never really been interested in outdoor activities or many of the things that Scouts do. But it works really well for Jason. Once again, my children are taking me in a direction I never expected to go.

I didn't realise how long it has been since I'd posted anything.

Jason has now been on Abilify for a year. It's made a big difference in his behavior. We got the "home run" that the psychiatrist was hoping for. The Zoloft didn't work for Timothy. It just made him more hyper. We took him off it after about 4 weeks. We considered trying another one, but decided not to for the time being.

More to follow--I have a couple of things that I wrote during the year but have never posted.

We've been to see the psychiatrist three times in the last few weeks, once for a follow-up visit about Jason's medication, and twice with Timothy for an initial evaluation and treatment strategy.

Jason had been taking Tenex, a blood pressure medication that was supposed to help him settle down a bit. He'd been having a lot of trouble in school, talking too much in the classroom and getting aggressive on the playground. He stopped getting into trouble at school, but we didn't like the impact it had on him at home. He was no longer interested in interacting with us when he got home from school. All he wanted to do was sit watching TV and tracing pictures from books.

We've already tried Zoloft, and that didn't work out well either--he became very manic. He'd gotten through six months of kindergarten without a hitch, but once we put him on Zoloft he was in the principal's office 3 times in 7 days. This time the psychiatrist recommended trying the atypical antipsychotics. Specifically, he wanted to put Jason on Abilify. He said if it worked really well we'd see a significant decline in anxiety, better frustration tolerance, easier transitions, and less aggression. We're a week into it now, still much too soon to tell what it's really going to do for Jason.

As for Timothy, after hearing us describe his behavior and observing him, the psychiatrist said he probably has Obsessive-compulsive Disorder. That makes sense to me given the hours and hours Timothy will spend dropping crayons or rocks or cereal or anything else he can get his hands on onto the floor.

The medication of choice for OCD is SSRIs (selective serotonin reuptake inhibitors). We've started Timothy on Zoloft now. In the first few days we (and his speech therapist, and grandma) have noticed significantly more eye contact. Hopefully that means that this is the right medication for him. The doctor said that response to SSRIs varies quite a bit from child to child and drug to drug, so we might have to try 4 or 5 SSRIs to find the right one.

We went up to my in-law's vacation home in today to celebrate New Year's day. My mother-in-law and I went out for a walk with Timothy. Currently Timothy is obsessed with dropping rocks. He grabs handfuls of rocks and slowly dribbles them out of his hand onto the ground. Timothy kept wandering off into people's driveways and yards to find rocks. I'd have to go and fetch him. Sometimes I'd take him by the hand and lead him back to the sidewalk. Sometimes I'd just turn him in the right direction and pat him on the back to get him started.

A couple of times I told him to go follow Grandma. And he did. This was a surprise to both of us. Over the last year, Timothy has shown an increasing awareness of and interest in other people. Two years ago I don't believe he would have followed her.

As I thought about it I remembered instances with Jason. As a toddler and pre-schooler I used to take Jason on walks in the neighborhood after dinner. I had to be very vigilant to keep him from bolting away. Often, I had a lot of trouble getting to come home.

My therapist at the time kept telling me that if I would just start walking home, he'd follow me. I tried this on multiple occasions, and it rarely worked. Usually he would just ignore the fact that I was leaving. Sometimes he would run off in the opposite direction, leaving me to sprint back towards the playground in order to catch him before he reached the street.

During one of my parent's visits we went with them to the Seattle Aquarium. In the car on the way home from the aquarium, my mother commented about how frightening it was to take Jason into a public place. "When he runs off, he doesn't look back!"

That was before Jason had been diagnosed. In fact, before we realized that there were major issues with Jason's behavior. Since he was our first children, we didn't realize that his behavior was atypical.

Now I can see it as a typical behavior for a child with autism. People just aren't that interesting for children with autism. They are more likely to be drawn to things, and if the people around them don't follow along, that doesn't really matter.

It was really nice to see that today, at least some of the time, Timothy found going with Grandma to be more interesting than finding more rocks.

We got really excited yesterday, because Timothy took a several bites of apple and then spit them out on the floor. For most people, this would be annoying rather than exciting. But for us it was a big deal, because the last time Timothy ate a piece of apple was 2 1/2 years ago.

At the age of 16 months, Timothy had a fairly typical toddler diet. He ate sliced turkey, macaroni and cheese, fruit, bread, cereal, and a variety of other foods. He loved corn, and would sometimes eat an entire cereal bowl of corn for dinner.

At around 18 months, he began refusing to eat food that he had previously eaten. By his second birthday the range of foods that he would had narrowed to a tiny fraction of his previous diet. One day around Timothy's second birthday we went out for the afternoon and left him with a friend. My wife told her friend that she had put a list of the foods that Timothy would eat up and the fridge. I remember her friend laughing and saying "You can fit all the foods that he eats on a note?"

My response was "Actually, you can fit everything that he eats on a post-it." And you could. At the time Timothy ate dry cereal without milk on it, cookies, crackers, chips, and occasionally toast. He drank milk from a bottle and water from a cup. And that was it. He wouldn't touch any other food. He didn't even want them on near him.

For some reason, this was a particularly difficult concept for other people to grasp. Lots of people told us "if you let him get hungry, he'll eat". But he didn't. I remember telling a friend one day that Timothy's feeding therapist (a category I had never known existed) had managed to get him to taste some chocolate pudding. His response was snide--"Oh yeah, we all know how hard it is to get kids to eat chocolate pudding." I practically screamed at him "No, we've been working on this for MONTHS!"

No one has ever been able to explain to us why Timothy has such a limited diet, but we do know that he is not alone. While most kids with autism are not such incredibly finicky eaters, there is a clear sub-population that won't eat most foods. I wonder sometimes if the finicky eaters will ultimately turn out to have a particular sub-strain of autism.

One thing that is particularly difficult about having a child with autism who won't eat most foods is that diet is a hot issue among the autism community. There are people who absolutely swear by the GFCF diet, which requires eliminating all dairy and gluten. Since everything that Timothy was willing to eat had either dairy or gluten, this was a non-starter for us. I firmly believe that trying this diet would turn our house into a war zone. But people would constantly urge us to try it.

Over time Timothy's diet expanded, albeit slowly. He would eat donuts and Starbucks scones (but only cinnamon or pumpkin, other flavors were not acceptable). He started eating pizza. But ONLY if it was Papa John's cheese pizza. He didn't want other brands or other toppings. For his third birthday one of my brothers sent a Papa John's gift card, which was much appreciated. He began eating yogurt and drinking apple juice.

In the last few months Timothy has suddenly become much more willing to try new foods. The process of accepting a new food is very messy. First he begins to lick the food. A few days later, he starts tasting it, and then immediately spits it back out. We now keep a plastic bucket next to his chair at the dinner table, and have taught him to spit food into the bucket instead of onto the floor. After a few days of spitting, he then starts swallowing the food.

Timothy now eagerly eats pasta and KFC Popcorn chicken. At his last parent-teacher conference we learned that he was stealing other children's peanut butter and jelly sandwiches during snack time. We were flabbergasted, but when we tried it at home, sure enough, he ate it.

And yesterday he tried an apple. After he spit out the first pieces on the floor, I brought the bucket over to where he was standing. My wife said "I just let him spit on the floor--when he's trying a new food I don't want to do anything to disturb him." And she's right. If he spits a new food onto the floor, that's a good thing.

I live in suburban Seattle and I have two children, both of whom have autism. My wife and I talk about writing a book--our children give us lots that we could write about. I wanted to start writing and sharing some of those thoughts now, and I thought a blog would be a good way to do it. In order to preserve our children's privacy, I will be using psuedonyms, but the stories and thoughts here are taken from our daily life.

Jason is 7 years old. He's very bright--various clinicians that we've taken him do have diagnosed him with High-function Autism, Asperger's Syndrome, and PDD-NOS (Pervasive Developmental Delay--Not otherwise specified). Our interpretation of this is that he clearly belongs somewhere on the Autism spectrum, but at higher levels of functioning it's tough to get people to agree on exactly what the different diagnoses mean. Jason has a difficulty with social interaction, and doesn't like any changes to his daily routines. If you know what to look for his impairments are easily apparent, but to a casual observer Jason seems like a typical kid, at least at first.

Timothy turns 4 in couple of weeks. His autism is significantly more severe than Jason's. His receptive language is good; he seems to understand a great deal of what we say to him, but his expressive language is extremely limited. He doesn't speak. We've trying to teach him to sign, and he does occasionally use a couple of signs. His various therapists and teachers are trying to teach him to use PECS . Timothy doesn't sleep well and he has an extremely limited diet. Physically he is very healthy, for which we consider ourselves fortunate. But behaviorally he has very challenging.

That's about all I can say for my first post. Timothy is pulling on my sleeve. I think he needs something to eat.