Category Archives: Development

The Social Realm

In his quest for friendship, Nigel regularly requests sleep-overs. It took a while for him to accept the fact that he could only invite friends to spend the night at our house, as opposed to inviting himself to spend the night at friends’ houses. I think he now understands the way that works, after about three dozen reminders. So last weekend, he invited two brothers from one of the Scout families we know to spend the night, and I made some mental notes as I watched Nigel’s social development in action.

He spent most of the evening in echolalic mode, which worried me. He used echolalia as a tool to be social before he was functionally verbal, but we don’t usually see much of it these days. The exception to that is when he is stressed, which sometimes happens when he’s trying to make peers think that he’s just like them. What he was doing Friday night was not what I call stage 1 echolalia, which is parroting (repeating back what is said to him). He started off with that between the ages of 3 and 6, and moved on to what I call stage 2 echolalia, which is repeating random lines from videos he has watched. Stage 3 echolalia is repeating certain lines from videos and trying to fit them within the context of the situation. Stage 4 is taking those strategically used lines from videos and customizing them by inserting correct names and other details relevant to the situation. Nigel now mixes stage 4 with his own spontaneous speech on a daily basis. But occasionally, when stressed or unsure of himself socially, he reverts to stage 3 and even stage 2.

During dinner Friday night, he was so worked up that he was quoting random lines from the live-action Scooby-Doo movie. I think he was trying to make the kids laugh, because he could hear the movie in his head and it was making him laugh, and he was trying to share that with them. But by merely spouting the lines randomly, he only caused confusion for the boys. They were polite and accepting, but they didn’t know how to respond, and I could tell they were uncomfortable. So I had to poke my head in the room and try to steer the conversation to a different topic.

I aurally checked in a few minutes later, and Nigel was doing a little better. He had moved on to stage 3, and I overheard him say a line from Jurassic Park: “In 48 hours I’ll be accepting your apologies,” when his friend accidentally bumped him. By the time dinner was over, he was back to mostly employing his own speech, which I think occurred because the boys started talking about James Bond movies, which is Nigel’s Obsession of the Week. Aidan and the two guests were discussing the story about the painted girl in Goldfinger dying because her skin couldn’t breathe, and the fact that Mythbusters disproved it. (I smirked back in the kitchen and refrained from telling them about my college days, when a friend of mine did a photography project using models painted in all one color, and I was yellow. Suffocation was not a concern at that point.)

But the good part was that Nigel had calmed down enough to interact appropriately with his peers. How he was acting earlier made me think that he was probably like that at the middle school, and there was no adult around to moderate the conversation, so things just escalated to the point where an intolerant NT kid punched him in the face or told him to run laps around the field and laughed at him. It’s easy to see how he reverts to the stages of echolalia when he is over-socialized because it’s comfort behavior. It’s something that he knows. When some random kid at school is talking to him, he doesn’t know what to expect. So he starts playing a movie in his mind and starts verbalizing the lines that he’s hearing because he knows what comes next. And that is one of the reasons why mainstreaming won’t work right now. He still has a lot to figure out in the social realm. I certainly prompt him when I can, when I’m there, but most of it he’ll have to do on his own.

Extroverted Autism

By nature, or by definition, most autistic people tend to be introverts. It just goes with the territory. But what happens when that is not the case? Is it even possible that a person can be autistic but also be extroverted? How? And wouldn’t that be the ultimate cruel irony? Someone who desperately wants to be social having a developmental issue that makes the very thing he wants be nearly insurmountable to achieve.

I truly believe that Nigel has struggled with this since toddlerhood, possibly even infancy. Long before he was verbal he would try, always unsuccessfully, to interact with his peers. He couldn’t talk, so he went up to them and laughed, only to be misinterpreted with disastrous results. He would try to interact with adults by going up to them and saying their license plate number. He wanted so badly to connect with people, but they were people in a world from which he so desperately needed relief. He couldn’t go into public places because he did not know how to filter all the sounds that bombarded him and caused him such agony. His sensory issues were so extreme that they – and his social issues – prevented him from being true to his social nature and his desire to be a social person.

So, Nigel evolved. He had to if he wanted to interact with people. Various therapies had a lot to do with his success, but I firmly believe that his drive to be social in the first place is what motivated him to keep trying to connect and caused him to respond to the therapy as well as he did. He somehow, over several years’ time, learned to filter out the sounds that prevented him from going into stores, restaurants, public restrooms, etc. He stretched his cognitive skills to not only repeat lines from videos he’d seen, but then he used certain lines and fit them within the context of a situation in order to express himself verbally. He wanted to communicate. It just took him several years to learn how.

It is truly remarkable what he has achieved. I have a friend with adult ADHD, and he has said that on some level he can identify with Nigel because of his own experience with learning to regulate certain aspects of his behavior. It took a lot of time, patience, awareness, and hard work, but the rewards have been well worth it.

I am an introvert. Had I been autistic, I probably would not have talked. I don’t think I would have cared. I enjoy being in my own head so much as it is that, were I autistic, I would most likely love to stay there. I certainly don’t mean to simplify the complexities of autism and the reasons why some autistic individuals learn to talk and some don’t. Nor do I mean to propose that some autistic people just choose not to talk because they are introverts.  But I can’t help but think that the way we are socially wired – introvert or extrovert – has to affect autistic individuals as well. I don’t think that autism would cancel out a person’s natural inclination to be social, if that’s in his or her personality. I see it every day with my son. He just has to try a lot harder than most people.

Lack Thereof

Yesterday I wrote a post about Nigel showing empathy without being prompted, and today I thought I’d write one to illustrate his development in that area, and how far he’s come.

Nigel has been involved in Scouting since 2004, and it has been entirely positive. He’s been in Boy Scouts for two years and was in Cub Scouts for almost two years. Three years ago, when he was ten, we were attending a monthly Pack Meeting at the elementary school, and there was a stage set up in the gym for the school’s annual talent show, which was held that same week. The Pack Meetings were typically held in the gym, so all the kids had fun climbing on the stage and play-acting. One Scout’s younger sister (about age four) slipped and somehow became wedged in between the stage and the wall behind the stage. She was stuck tight, and it took at least five minutes of planning and carefully moving the stage to get her out. One of her thighs had taken the brunt of being stuck, so it had been scraped, but other than that, she did not appear to be seriously injured, and was mostly crying out of fear.

The whole episode peaked Nigel’s interest. If I had realized the reason behind his interest and taken into account his lack of empathy, I would have stopped him from going over to the worried parents as they comforted their daughter when she was removed from the stage. I would have stopped him anyway, if I had been close enough to him, since I didn’t want him getting in the way. But he was not near me when I saw him walk quickly over to the parents, and I dashed to catch up to him to distract him before he could reach them. I arrived just as he loudly asked, “Can I see the scar?” The mother scowled at him, turned, and walked away carrying her daughter.

I, mortified, apologized to the father and led Nigel away, explaining to him that what he asked was not appropriate when people are hurt. At the time I thought the concept was lost on him. “I didn’t want to touch it; just look at it,” he persisted. But something about my response must have stayed with him. He must have absorbed it, filed it away, as he does with every other piece of information that comes his way. And gradually, over the years, he is learning to apply it, along with every other time I’ve tried to teach him about empathy, what is appropriate to say or not, and what would be the best response in a situation. He is learning that what really matters are people and how they feel. And as evidenced by what happened on the recent backpacking trip, he’s starting to do this on his own.

Emerging Empathy

One of the most difficult things to teach an autistic person is empathy. It can require years of repetition, and even then reminders are needed; rarely is an empathetic act spontaneous, at least in my experience. It’s just due to the nature of autism – inherent in the “aut” (self) part of it. And so, we have to teach them to care, and we hope that one of these days they’ll do it on their own.

This past weekend Nigel went on a two-night backpacking trip with his Boy Scout troop, and I stayed home with Aidan. Nigel usually does very well with the troop, provided they’re not doing the type of gift exchange where everyone picks a number, and the higher number-holders get to “trade” gifts with the lower number-holders, whether they want to or not. No, Nigel didn’t do well with that. He lost a giant chocolate bar that way, and he’ll never forget it (I’m sure no one else from the troop who attended that gift exchange will forget it either). But other than that, most of his outings with the troop are problem-free. I asked the scoutmaster to remind Nigel to take his medication, and off they went on a 13-mile backpacking trip.

Upon their return, I asked the scoutmaster how things went, and he said that Nigel did really well. He only took issue with having to get into a wet tent after it had rained. But then the scoutmaster told me that one of the nights he woke up to what he thought was a coyote, then he realized it was one of the kids crying. He got up to investigate and realized it was coming from Nigel’s tent, which he shared with another boy. The scoutmaster stood and listened as he heard Nigel consoling the other boy whose stomach was hurting. When the other boy said he wanted to go home, Nigel calmly stated that there were no motorized vehicles to take them home and that he should try to relax. The next morning the scoutmaster thanked Nigel for helping the other boy.

It has taken many years, with many setbacks along the way, but Nigel has reached a very important milestone: showing empathy (in a leaky tent, no less). I’m certainly not deluding myself into thinking that it will always be like this from now on, but it’s an encouraging start. It’s more than encouraging; it’s truly wonderful. He’s applying life skills without reminders, and I am thrilled.

Anger Management

Man, what a day. Just when I think things are going pretty well, thinking I can breathe a little easier, the phone rings. As an introvert, I don’t get too excited when the phone rings anyway. But when Nigel’s not home and the phone rings, I get nervous.

This afternoon, Nigel wanted to ride his bike to a neighborhood kid’s house a couple of blocks away, so I said sure, just be careful and be home by five. Less than 45 minutes later, the phone rang and it was the elementary school about half a mile away. Apparently the kid he went to visit wanted to hang out at the school, so Nigel went with him, and then he proceeded to get into an argument with the kids in the after-school club there. One of the girls said something that upset Nigel, and things escalated to the point where Nigel was so agitated that he threatened her by saying he would tear her arms and legs off, after she had called him a second-grader. I told the school I’d be there in five minutes.

If I had a dollar for every time all the schools over the years called me about Nigel’s disruptive behavior, I could certainly pay for a much-needed massage for myself. You would think after all these years that I would be used to it, that it wouldn’t rattle me the way that it does. But every time it happens I feel like I have a brick in my gut and a sense of hopelessness floods my veins. I’m so tired of it. I’m so tired of having to apologize and explain my son’s behavior to someone and wondering if it will ever change.

But this time was different. This time Nigel apologized, and without prompting. To the adult moderator of the club he said, “I’m sorry, I have autism and sometimes I can’t control my anger.” And then, on his own, he went and apologized to the girl, told her that what she said had upset him, and she apologized to him. It was like something out of a movie. Something I wouldn’t have dared to dream of.

And the brick was gone and I thought, Wow, he’s actually starting to get it. Then we went home and I talked with him about what had happened, and how proud I was of him that he had apologized. He still needs to do a lot of work in the area of letting go of an argument and the feeling that he has to “get back at someone” when they upset him, and remembering that it’s never okay to threaten people. And I know I have to prepare myself for many more confrontations and ensuing phone calls. But we made progress today. Development is always slow, but it’s there. And so is my faith in him.

Haircuts

Either I picked the wrong day to cut Nigel’s hair, or he picked the wrong day to want to print out 29 pages of pi. That’s right – he found a website with a link to print out 29 pages’ worth of 3.14. As I was setting up the hair-cutting station in the kitchen (having prepared him verbally for two weeks), he came running into the room and in an uncharacteristic, excited tone said, “I’m printing out all of pi!”

In retrospect, I should have let him do it. It’s just that, on my reduced income with homeschooling him, I can’t afford to be buying ink cartridges every week. I ran into his room, shut off the printer, and canceled the print job while he screeched at me. Then I tried to explain to him about using up ink in the printer, and that he should check with me before printing out anything over five pages. He began smacking his forehead with the back of his hand and making angry growling noises.

I always talk about how I “pick my battles” with my kids, and how I weigh if something is worth an uproar or not. I’m thinking that perhaps 29 pages of ink was not worth it. I should have let him print out pi. However, I didn’t want to “change my mind” midstream, mid-uproar, and have Nigel think that if he screeched and growled and hit himself that he could get what he wanted in the future. So finally I got him to calm down by pointing out to him that if he printed out pi, there would be no more ink to print out his zoopraxiscope templates (Obsession of the Week).

Then I faced the formidable task of getting him to let me cut his hair. I really wish he could just let it grow long, but, out of boredom during Spring Break, he began pulling it out again (although not eating it, much to my relief), so I told him it had to be cut. Since his first haircut at the age of three, he has hated haircuts. He has an unrelenting fear that his ears will be cut, coupled with sensory issues that made him unable to bear the vibrating clippers. For many years we did not use clippers at all, only scissors. But that was before he started pulling out his hair, and at that point we needed to cut it as close as possible. Especially since we wanted to put off having to do it again for as long as we could. So now I use the clippers, after having him slowly get used to it, and he always puts earplugs in. I keep a set in the same box as the clippers so they’re always there.

Nigel used to shriek when I’d cut his hair, and for years I feared that Child Protective Services would come banging on my door. In fact, I’m surprised they never did. It’s one of those things about the early years that I am so glad to have behind us. Now when I cut Nigel’s hair, he certainly lets me know he doesn’t like it, but he doesn’t scream and thrash around. He lets me do it, although he lectures me each time not to cut his ears (I never have, so he’s not drawing on any past experience), and he constantly shrinks away from the clippers, making the job very difficult.

And this time, he was angry because I hadn’t let him print out his 29 pages of pi. He kept making sounds like a snorting horse as he sat in the seat while I cut his hair, forcefully saying, “Hey! Watch it!” every minute or so.  But he let me do it. I wasn’t sure at first if he would. He was resisting me as I tried to guide him to the chair in the kitchen and tie the plastic cape around his neck and sit him down. I could tell he was still mad at me.

But maybe Nigel has his own take on picking battles. Maybe somehow he sensed that a) this was something he knew was coming, b) I’d cut his hair many times before and it really wasn’t that big of a deal anymore, and c) making threats about not doing the cat litter if I don’t let him do what he wants to do never works, and he better just sit down and get this over with. He’s learned to save his big stands for the things that really matter to him. Like printing out two pages of instructions to make a neat invention instead of 29 pages of numbers. And not eating broccoli.