Teen Autism

Often at the start of a new year, we note things that we would like to change about ourselves or our lives. We make resolutions and take steps to lose weight, be healthier, save money, or achieve a goal.  We are determined to improve.

Yesterday, I began preparing Nigel for his doctor appointment at the end of this week. He tends to detest these medication-management appointments, being asked to rate his mood, and answer other questions that he would rather not. So I thought that I’d prepare him a few days ahead of time, asking him some of the questions that I recall the doctor asking previously, so that Nigel can start thinking about his answers. “How would you rate your mood?” I asked.

“Fine,” he answered as usual. Then he added, “But I don’t see any changes.”

Surprised and intrigued at this part about “changes,” I pressed further. “What changes are you hoping to see?”

“My behavior. I want to not get angry so much so that I can go back to regular school.”

And my heart thumped as I understood what I had always wondered. Even though Nigel is much calmer with homeschooling than with mainstreaming, he is an extroverted autist, and he misses being in a more social environment. Even though he is regularly involved in Boy Scouts and attends a weekly social skills class, it’s not enough for him. He craves more. The sad part in all of this is that, because of his autism, he usually can’t handle more. It is very difficult for him to regulate his behavior and emotions. He is learning, but I’m hoping there is some medication that can help him with this. He has been on Zoloft to help with his OCD symptoms and anxiety, and that has been beneficial. I explained to him that the medication that he’s been on is not designed to help with behavior modification, but that there might be medication available that can help with that. One of his problems is that when kids do or say something to purposely agitate or upset him, he blows up, and he’s not able to regulate himself. Then he ends up getting in trouble, and it becomes a vicious cycle, because it’s fun for the bullies to upset him. Suggesting to him that he “ignore” them does not work for him. He is not able to ignore them (in my opinion, they should not be doing it in the first place, but that is another issue).

I don’t know if there is a type of medication that can help him with his behavior. We’ll be discussing it with his doctor, but if any readers have any suggestions, please let me know. I’d love to have Nigel be able to attend the local public school, at least part-time, because it would mean so much to him. His new year’s resolution is to go back, and I want to help him achieve that goal.

Continuing the series on information from the Autism and Puberty seminar I attended . . .

How does emotional age affect adolescence? It’s what makes adolescence come later for ASD teens. And if their social-emotional gap is large, they don’t reach adolescence until well into adulthood; in some cases, not at all. For ASD parents, puberty and adolescence is a long ride that can last into their child’s twenties or later; it’s not over after twelfth grade! Parents are constantly teaching, and ASD teens are constantly learning. It’s a time for reaching out to peers and being more aware of the media. They get information from many sources, and it needs to be filtered. Even though at the onset of adolescence ASD teens tend to want more peer interaction, they are still not connected to what their behaviors look like to others. They will need constant communication about what’s appropriate and inappropriate, and it’s up to parents to provide it. ASD teens don’t ask the questions that NTs ask. It’s up to parents to anticipate what they need to know and guide them.

Typically, adolescence – the time of emotional and social maturation – begins at around age 11 for girls and 12 for boys. In the previous post, I estimated my son’s emotional age to be around 8 or 9. Therefore, I can guess that he should begin adolescence in 3-4 years. He will be 17 or 18. Before I attended this seminar, I thought that because he recently started indicating a budding interest in dating that he was entering adolescence. This is not the case. He is merely reacting to what he sees with his typically developing peers and the teens he sees in the media. About a month ago he asked me what “flirting” meant. I explained it to him in simple terms, and then he printed out a Wikipedia definition and proceeded to notify me whenever he witnessed what he thought was flirting, based on the Wikipedia description. Even 8- and 9-year-olds have crushes and can indicate an interest in the opposite sex. It doesn’t mean they’re entering adolescence yet, and neither is my son.

When he does get there, the presenters at the seminar recommended teaching the following:

• How relationships grow
• How sexual feelings happen and how they can be handled
• Differences between love and sex
• Laws and consequences of inappropriate sexual touching of self and others; importance of impulse control
• How pregnancy can be prevented – abstinence and birth control
• Sexually transmitted diseases
• Homosexuality
• Responsibilities of marriage and parenting

That’s quite a list! I know I’ll need help with that, and I’m sure other parents will, too. Stay tuned for a list of resources, which will be posted in the next installment.

Parties are a bit of a conundrum for the extroverted autistic individual. Of course, I am not extroverted and I am not autistic, so this analysis is based on my (slightly biased) observations as the mother of such. Being extroverted, Nigel craves the fun social interaction of a party, especially when the party-goers include family and friends who know him and love him. But being autistic, he often needs relief from the very social interaction he so craves. And as a verbal autistic, he often finds that the topics he chooses to discuss can cause confusion or amusement (at his expense). Sometimes he unwittingly says something downright inappropriate or resorts to movie echolalia. It’s tough needing to work so hard at something that’s supposed to be fun.

I watch him at a party at our house. Nigel’s working the room, showing each person one by one his self-designed Lego mini-figure of JFK, discussing his theories on the assassination, and even thinking to ask those over the age of 45 if they remembered the day that it happened. He is trying to make connections with people the only way he knows how – talking about his interests and asking for others’ opinions. He would do this all night if he could. But after a while, the din of a party will get to him, and he removes himself for a moment to take a break. If he doesn’t, he will become over-stimulated and could have a meltdown. It’s happened before. He knows this about himself, but sometimes I need to remind him. This time, he does it on his own. And then he’s right back out in the thick of things. Back for more.

I, meanwhile, hang back as much as possible at a party. This is especially difficult to do when it is being held at my house. So, I have devised a method of getting as much ready as possible before the guests arrive, making sure all the refreshments are accessible, and then I sit at the far end of my kitchen counter, visible if anyone needs me for anything and near enough to throw out a comment or two should the spirit move me, but removed a bit from the action. Unlike my son, who is making the rounds with his homemade spear from 10,000 BC and a Peruvian Chullo hat on his head that my father brought back for him as a souvenir from a recent trip. Later, guests will be wowed by his Terminator sunglasses, floating pumice rock, and knowledge of space exploration history. He is in his element, and I am impressed and proud.

And then Nigel gets a little carried away, a little cocky, perhaps. Maybe he’s thinking, “I’m working this party good. Who says I need a social skills class? I’ve got it under control.” He notices Mom sitting a little close to her boyfriend (who was just introduced to all the relatives tonight). Close enough to tease her about it. And then something flies out of his mouth in his loud voice. Something that brings the party to a grinding halt.

Nigel:  Mom, you’re sitting too close to his crotch.

Me: Nigel!

Nigel: That’s okay, because I want to have a baby brother. I want you to have another baby.

Me (about ready to pass out, not sure if I have the strength or wit to manage damage control): Shh! Quiet!

Note to self: Time for a little talk about FILTERS!

I have often said that I have a gray hair on my head for each time the school called me about some behavioral issue, each IEP meeting, and each public debacle we have survived. But I have more gray hairs that were caused by my son getting lost than by everything else combined.

Nigel is a wanderer. Up until he was about seven I had to have a lock high up on the front door or he would just run out and take off down the street. I wondered how I would handle it when he got older and could reach the lock. Implant one of those tracking devices? He was a runner, and it worried me. But something happened when he started to talk. He seemed to have less of an inclination to want to escape, and saying, “Stay in the house” was something he could understand. I felt like I could breathe a little bit more.

But the wandering nature is inherent. Whenever we are away from home, his exploratory urge kicks in, and he takes off if I’m not constantly watching him. Sometimes, in recent years, he tells me where he is going, but the odds are that he will not still be there when I come to collect him. Something else will have caught his attention, and he will have moved on. And I will spend the next half an hour running around looking for him, wringing my hands, imagining someone taking him, considering notifying the police, and basically driving myself into near-hysteria.  And it just happened yesterday. Again.

We had gone to a large park in a nearby city where an international fair was being held with lots of booths, exhibits, musicians, dancers, and food and craft purveyors. Nigel informed me that he wanted to go to the playground. I said okay, later wishing I had added, “and wait there for me.” After about ten minutes, we made our way toward the playground, and as we neared it, I glanced around for Nigel. I saw him scaling a mini climbing wall and started walking in that direction, briefly looking at some traditional Mexican dancers off to the side.  A moment later I reached the climbing wall, and there was no sign of Nigel. I went around the back of it. Not there. I looked at every playground feature. No Nigel.  Not again! I wanted to yell. How does he continue to do this to me?! He was just here!

I looked at the surrounding area, up in trees, around bushes (in case he had followed a bird or squirrel), all around. No sign of him. I informed the rest of our party (Aidan and my boyfriend) that Nigel had taken off, and they joined in the search. We walked through all the booths, went beyond the playground where there was an inflatable jumping/ball-pit thing attracting lots of kids, and even checked the belly dancing show going on. No Nigel. Then I retraced our steps back to the band we watched when we first arrived. Then I went back to the playground. I ran into my boyfriend and he suggested notifying the police. I said I wanted to make one more sweep first. I went beyond the playground, past the inflatable jumping/ball pit thing, past the belly dancing, and there, there, around the other side of all of that, was a fire engine. I saw Nigel’s head in the side window of the fire engine. He was seated with a bunch of little kids less than half his age, smiling and excited to be sitting in a fire engine. Oh, my son.

So many times have I felt this emotion without a name. It is a combination of intense relief, but also frustration, a little anger, and exasperation. The relief, of course, overpowers everything else. But how many times must we go through this? How many times must Aidan help look for his older brother? How many times must our plans be disrupted? How many times must I fear that he’s been taken? It is still so hard to bear, that sense of dread. The hysterical fear that he has been taken.

And yet, somehow I bear it. I must and I do. I say to myself when I find him, He’s okay, and that’s all that matters. And I admonish him for not staying where he said he’d be, and he apologizes, and we go on our not-as-merry way. And I think some more about implanting a tracking device in him. Or getting walkie-talkies. That is, if his could be strapped on to him somehow. Otherwise, I’d have a lost son and a lost walkie-talkie. Not to mention more gray hair.

I am excited to announce a new feature here at Teen Autism – the Social Group Bulletin Board! For several months now, I have been receiving emails from parents and grandparents requesting information about social groups for ASD teens. After researching their areas and responding to them individually, I have devised a system that I hope will be helpful for everyone.

If you live in an area that does not have the resources of a large city (with ASD schools and day camps that have social groups), you can start your own social group with the help of Teen Autism. Just email socialgroups@teenautism.com with your name, area, and how you wish to be contacted (phone or email). I will respond to confirm all of your information, and then I will post it on the Social Group Bulletin Board. Anyone who visits TeenAutism.com and is interested in social groups can check the bulletin board for contact information.

Connections are essential to building self-esteem. Think of your friends and the people to whom you’re closest – you probably have a lot in common with them. That’s why I feel it’s so important for ASD teens to be able to connect with others like themselves, should they so desire. As Nigel says of his friends, “They understand my difference.” And I can tell that means the world to him.

We’ve all had the experience, especially those of us who’ve been in the autism trenches a while, of dealing with unsolicited comments and stares regarding our children’s behavior. It comes with the territory. Sometimes others’ reactions are minor enough to let them roll off our backs; other times they’re so caustic that we cry over it later. And it’s later that we always think about what we should have said to those people, or what we wish we had said, or thought to say. Sometimes the situation is so bad that you can’t come up with anything except “I’m sorry for the disturbance. My child has autism.” That’s what I’ve resorted to many times, feeling exhausted and defeated, ready to start screaming myself.

Well, no more! I’ve decided that unless my son’s behavior is harming someone or damaging property, I am not apologizing any more! Yeah, right. Easier said than done. But instead of leaving a situation wishing I had thought up a witty retort, I’m doing it now. Here, then, are the five best comeback lines for unsolicited comments, stares, or “advice.” This is just a start! Please, feel free to add to the list. I need all the help I can get!

5. “Got autism?” (I admit – I saw this on a T-shirt.)

4. “What? You’ve never seen autism before?”

3. “We didn’t have a social story for this.”

2. “This is Teen Autism coming to you live from ______ ! [insert name of location of incident]“

Okay, here it is . . . the Number 1 Comeback Line for Stares and Comments  . . . wait for it . . .

1. “Too bad Michael Savage isn’t here. He’d know what to do!”

*UPDATE Oct.’08: You can also now substitute Denis Leary for Michael Savage! Even better! 

The following helpful comment was made shortly before Nigel left for LA. I was standing by the foot of my bed folding laundry when he walked in the room and spoke in his characteristically flat tone.

Nigel (pointing to my abdominal region): Looks like you’re working on another one.

Me (insulted): No, I’m not ‘working on another one.’ My belly is protruding because I’m bending over, not because I’m pregnant!

In retrospect, I should have used this opportunity to point out to Nigel that it’s inappropriate to make comments like that!  Another topic for “Social Awareness 101,” my new homeschooling subject this fall . . .

Yesterday I wrote about non-verbal communication and Nigel’s development in that area. I ended that post with an anecdote about his emerging ability to read others’ non-verbal communication so that he would not say inappropriate things. On the flip-side of that, I also want to discuss the appropriate things that need to be said, because he often has just as much trouble with those.

“I’m sorry.” Nigel has just recently begun to comprehend the importance of this phrase. I’m sure there were many times that I tried to get him to say it, to parrot it, when he was younger, but the time that I remember the most was when he was 6 and we had some friends’ children visiting at our home for a barbeque, and he was running around chasing them. In retrospect, I should have known that he was too ‘escalated,’ too wound-up to register anything that I said to him. But I was still learning about autism and how it affected him. So he was being chased by a 3-year-old, laughing, probably enjoying the interaction because he always craved it, and Nigel ran into his bedroom and shut the door quickly, not realizing that the 3-year-old’s fingers were already in the door frame. I immediately took the little boy into the kitchen to have someone soak his hand in cold water, and then I went to tell Nigel that he needed to say he was sorry. Again, I was still learning about how autism affected him and I didn’t realize that he couldn’t say sorry because he could not comprehend the word. So when I told him to say it, he just said, “No sorry, no sorry.” I demanded that he say it or he would have to stay in his room the rest of the day. He repeated his “No sorry” mantra and then began screaming.

Two years later, a neighborhood girl verbally provoked him beyong his level of coping, and he allegedly “punched” her. The girl ran to tell me what Nigel had supposedly done, so I took him inside and told him that if someone is bothering him or making him mad, he should come and tell me instead of doing something to them that would get him in trouble. Later, he said he wanted to say he was sorry to her, so I walked him to the driveway and he went up to her and did it on his own. Then, while walking back home, he asked me, “Why do we say ‘sorry’?” He knew what he was supposed to do socially, but he still didn’t understand why. I think that now, at 13, he understands why, because he says it readily and remembers to do it on his own.

“Thank you,” however, he often forgets to say. Often, as in on a daily basis. I know that he understands the reason for saying it, but he just doesn’t do it unless prompted, much to my dismay. I could understand having to prompt him when he was younger, but he’s now a highly verbal 13-year-old! I guess I have to just keep doing what I’m doing, keep up with the repetition, and hope that one of these years he’ll get it.

Greetings are another gray area for him, and always have been. He often greets a household guest by walking up to them and showing them his latest Lego creation. I have to remind him, “Say ‘Hi, Grandma’ and give her a hug!” and then he does. He has to be coached on the phone as well.

I think the reason why these words and phrases are hard for him is because they are vague. They’re not nouns or adjectives or verbs (with the exception of thanking). There’s nothing to visualize. And for someone who is a visual learner, that makes it difficult. For someone who’s also trying to learn, at the same time, how to be socially appropriate, it’s a lot to absorb and apply. He’s mastered sorry, finally. I still have hope for thank you and hello.

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.

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.