Becoming Adaptable

The reasonable man adapts himself to the world: the unreasonable one persists in trying to adapt the world to himself. Therefore all progress depends on the unreasonable man.              -George Bernard Shaw

Yesterday we went to our local Family Fun Center, where Nigel loves to drive the go-karts. As we were en route, the sky clouded up quickly, and it started raining before we even got there. When we pulled up, I looked over at the go-kart area and could tell that they were not running. “Well, guys, the go-karts are closed,” I announced. “That’s okay,” Nigel said. “We can go in the arcade.” Adaptability score: 1

I don’t know how Nigel filters out all the sounds, lights, and people in a busy arcade, but he does. I think it’s because it’s something that he really wants to do, so he’s motivated. Or, it could be because there’s so much going on that even his brain can’t isolate all the sights and sounds, and so it’s just one big bombardment to tune out. But somehow he’s learned to deal with it. Adaptability score: 2

Nigel, having a lower emotional age than other 14-year-olds, has always enjoyed climbing and sliding on play structures. You know, the indoor ones that usually have a height limit of 48 inches, which Nigel surpassed a few years ago. He sometimes rationalizes: “I can go on it because it’s not crowded.” But he is now at an age and size which makes it inappropriate for him to continue playing on the indoor play structures, and doing so could even get him in trouble with people who don’t realize that he’s an 8- or 9-year-old in a 14-year-old’s body. He could be seen as a threat. So, I figured it was time to break him of this habit. He asked, as he usually does at the Family Fun Center, if he could go in Cactus Jack’s Playhouse. I non-confrontationally posed that he might be too big for it, and I suggested that he ask if there was a height or age limit. He came back a moment later and said, “Twelve and up. And since I’m fourteen, I can go in.” “I think it’s twelve and under,” I said gently.  “But I really like it,” he said in a quiet, forlorn voice. “I know, honey, but you have to realize it’s not built for kids your age.” He looked down and said, “Okay.” Then he looked up and asked, “Will you play air hockey with me?” Adaptability score: Bonus 10 points!

Such a “reasonable man” my son is becoming. And a good air hockey player, too!

Just One Wish

A few weeks ago I wrote a post regarding a survey (taken by Natural Learning Concepts) that I found to be discussion-worthy. They recently posted the results of another interesting survey:

Over 5,000 people have been asked this question.  The results of the poll are:

If you could pick ONLY one of these for your child/student, what would it be?

1. A superior educational program with well trained staff – always 33%
2. A really good friend – always 37%
3. Excellent conversation skills throughout life 14%
4. Great behavior and enjoys staying focused – always 16 %

 

The results do not surprise me. I participated in this survey, and I did not have to think twice about what I answered. As important as #1, “a superior educational program with well-trained staff,” is for any special-needs child, as a parent, I chose #2, “a really good friend – always,” as what I wish for my autistic son.

Numbers 1, 3, and 4 help our children to succeed, and to feel comfortable and capable. But #2, far more than the other three items, helps our children to feel valued. To feel like they matter. And, in a roundabout way, feeling that way will help them to succeed, and to feel comfortable and capable. Having real friends boosts self-esteem like nothing else. I have seen how happy my son feels when he is accepted and appreciated for who he is, and if I had to choose one thing out of that list for him to have all of his life, that is it. A really good friend – always. We should all be so fortunate.

Scouts Are the Best

Last night Nigel had a Scout meeting. I was a bit apprehensive because the last meeting did not go well, meaning Nigel’s behavior. And because I could not pinpoint what had caused his step backward, I worried that he might continue down that road.

But as I have come to learn, autism is nothing if not unpredictable. Inconsistent. And so I shouldn’t have been surprised when Nigel did really well at the meeting last night. He didn’t interrupt anyone, he only got in someone’s face once, and it was brief, he participated and paid attention. He even requested, appropriately, to show the other Scouts something he had brought with him. He needed to bring it in from the car, and the Scoutmaster said that he could do that near the end of the meeting.

And that’s when I got a little nervous. He wanted to show them a little stuffed animal toy that he had received for his recent fourteenth birthday. It was Gizmo, from the movie Gremlins, and he had barely let it out of his sight since he received it Friday night. He had been sleeping with it every night; he brought it with him to his social skills class on Monday. I knew that someone with an emotional age of eight or nine couldn’t realize that typical twelve- to fifteen-year-olds would not find his little stuffed animal to be nearly as intriguing as he did. I wondered what sort of a response to expect from them.

When the time came, Nigel went out to the car and retrieved Gizmo. He reentered the room with it hidden under his jacket and made a big deal out of keeping it a secret until he was ready to reveal it. Of course the boys were wondering what he had under his jacket. A fascinating geode? A live animal? They kept prompting him to show them, and finally he did. I held my breath.

Gizmo

I needn’t have worried. Once he identified what it was, they all said, “That’s cool, Nigel,” and he took it around the room so all of them could look at it, which they politely did. They did not speak to him in a patronizing manner. They did not roll their eyes or make disparaging remarks. They got it. They realized that this was something important to Nigel, and they were supportive. And I wanted to hug all of them.

So here’s a big shout-out to the Scouts of Troop 535 and their parents: You guys are so great. You make Nigel feel accepted, and he appreciates it, and so do I. Thanks so much for your patience and understanding. It means more than you know.

Killjoy

Nigel (looking at the new watch he received for his birthday): It’s been eighteen hours, six minutes, and thirty-seven seconds.

Aidan (without looking up from his book): Huh?

Nigel: I’m counting the hours, minutes, and seconds.

Aidan: Since what?

Nigel: Since today started.

[Aidan does not respond.]

Nigel (trying to pique his brother’s interest): This is American machinery we’re dealing with.

Aidan (without skipping a beat): It was probably made in China.

Adventures in Puberty, Part 5

When I left the Autism and Puberty seminar I recently attended, my head was swimming with all the information I had obtained. I had learned about the difference between puberty and adolescence, that there is nothing delayed about the former and that the latter usually is. I learned how to teach about difficult topics like sexual abuse. I learned how the concept of emotional age affects how a child responds to puberty and adolescence. I learned what to teach older ASD teens when they do reach adolescence. There was quite a bit of information to absorb, and I knew that a good deal of it would require some follow-up.

The seminar presenters thought of everything. They provided a list of resources with a wealth of information and tips.

Books:

Websites:

Adventures in Puberty, Part 4

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.

Adventures in Puberty, Part 3

And now, the part that you’ve all been waiting for (I know, because I was, too) – dealing with emotional immaturity during puberty. This is the crux of the matter, I think. This is what makes us wonder what is going on with our ASD kids, why they fly off the handle, why they indicate an interest in dating even though they’re nowhere near ready for it. I went to the Autism and Puberty seminar seeking advice about these points, and I understand a lot more now than I did before.

So far I’ve been able to determine two main issues contributing to problem behaviors during puberty:

1) Learning to deal with hormones. It’s hard enough for NT kids to handle their surging hormones, and for ASD kids, it’s even more difficult. And ASD children who had severe sensory issues when they were younger are going to have a harder time. It took my son, who is now 14, years to learn how to filter out all the sounds and other sensory issues that were agonizing to him as a younger child. Similarly, it took him about a year to learn to filter or “deal with” all the new hormones surging through his body once puberty hit. He seems to have reached a (probably temporary) plateau at the moment, but prior to a few months ago, he was frequently agitated, short-tempered, and volatile.  He seems to have adjusted to the hormones, although I’m bracing myself for future “surges” as we get through the rest of puberty. Hormonal changes are also said to possibly trigger seizures in kids who had not previously had them, up to 1 in 4. (The presenter at the seminar explained that seizures in young ASD kids are caused by a different type of brain activity.)

2) Emotional immaturity. What exactly does this mean? As we know, autism is categorized as a developmental disability, a pervasive one that affects many different areas of development. As ASD kids get older, many of them do develop language and communication abilities, cognitive development improves, and sensory integration can as well. But social and emotional development usually lags behind, even in the presence of high cognitive ability. How behind? It varies, and it depends on something called emotional age. Emotional age is the level on which your child relates to others, and it is usually determined at your child’s school. For example, when Nigel was in fourth grade, his teacher explained to me that his emotional age was four. Yes, four, when he was ten years old. What do they base that on? Usually they do observational testing, but parents can figure it out themselves simply by looking at what age group of children your child seems to relate to the best. At the time, Nigel was relating to preschoolers, and he often acted like one. Over the past four years, he has progressed. He has friends that are his own age, but he does not fully relate to them and they do not relate to him. They like him, they spend time with him, but they have a hard time understanding him. However, there is an 8-to-9-year-old boy in the neighborhood Nigel plays with, and they seem to be on the same level emotionally. This makes me believe that Nigel’s current emotional age is about eight.

I think about what it would be like to be eight years old and going through bodily changes and dealing with hormones, starting to have sexual feelings and not having the maturity to handle them. My son sees his peers interested in girls, he sees his age group being portrayed a certain way in the media, and so he thinks he should be that way because he wants to fit in. Of course, all teens want to fit in. But a 14-year-old with an emotional age of 8 is going to have a much tougher time. And he isn’t ready because he hasn’t even hit adolescence yet.

In the next post: emotional age and adolescence, and what to teach older teens.

Adventures in Puberty, Part 2

When my boys were little, one of my favorite things to do was inhale their scent at the backs of their necks and on the tops of their heads. And in doing this on a regular basis, I came to know their scents quite well. Consequently, I knew without a doubt when puberty had hit.

Thus we come to the next topic in the puberty series: Teaching self-care and hygiene. We increase the frequency of showers, introduce deodorant, teach about menstruation and body changes, etc., but we do it keeping in mind that repetition is essential to ASD kids absorbing any type of social learning like this. My fourteen-year-old son needs constant reminders when it comes to hygiene! But the difference between him and a typically developing fourteen-year-old is that my son will need reminders for much longer than the other.

As mentioned in the previous post, continue to teach sex education at your child’s level of comprehension. Once your child reaches puberty, it’s important to teach appropriate levels of affection with different circles of people in your child’s life. Convey the difference between hugging family and close friends and shaking hands with people in the community. It’s also important to remind your child about ways to recognize inappropriate touching by others and what to do about it if it happens. Teaching this to your child can help them if they are targeted for sexual abuse, which is unfortunately high among those with developmental disabilities. Many are trusting and have been taught to be over-compliant, which also puts them at risk. It’s also recommended to teach the basics of reproduction at this age, whether it be written into your son or daughter’s IEP as an educational goal or something that we parents teach at home.

Given the choice, we’d also rather not teach our kids about masturbation, but with ASD kids, it’s really important to discuss issues of privacy. Again, this is an area that will probably require some repetition about when and where it is appropriate to masturbate. Safety issues can also be a concern; they might insert things that could be harmful. If too much masturbation seems to be a problem, the presenters at the seminar I attended suggested increasing other physical activity during the day and decreasing downtime. Part of the reason for frequent masturbation is a need for sensory input, and often ASD kids don’t have the ability to realize that themselves.   

Tune in tomorrow for a discussion about emotional immaturity during puberty – understanding it and what to do about it.

My Final Day of Being Thirteen

This is Nigel. Today is my 14th birthday and do you want to hear about what I did yesterday, all you autistic kids out there? I went to Jacksonville, walked around the town, I got a little souvenir from a toy store (a lioness), and I went to the cemetery which since it was 5 days to Halloween, I was pretty scared. And then we went to a petting zoo where I petted 2 wallabies and other animals. Then we went home and just had fun listening to music from CCR, Rolling Stones, and AC-DC, and reading books. And now we’re going to have hot fudge sundaes for a birthday dessert. Bye- bye!!!