Monthly Archives: October 2008

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!!!

Adventures in Puberty, Part 1

The Autism Society of Oregon recently hosted a seminar on puberty and sexuality, and even though I had to drive 352 miles round-trip to attend, I made it a point to do so. I could not pass up an opportunity to obtain valuable information regarding this challenging stage of development.

The seminar covered strategies in dealing with puberty, teaching our ASD children about sex education, how sexuality develops over the span of childhood and teenage years, and why this information is important for kids with developmental disabilities to learn. Because such a wealth of material was presented, I intend to break up what I learned into several posts over the coming week or so.

“Nothing is delayed about puberty!” This was probably the most important point of the seminar.  The second most important point was the distinction between puberty and adolescence. Puberty refers to the physical changes happening with the body, whereas adolescence pertains to the emotional and social changes in development. The two do not usually occur simultaneously with ASD kids. This important fact hit home with me. I thought about my son and how I had just assumed that because he was indicating an interest in girls that he had hit adolescence, and that is not necessarily so. I learned that he is probably indicating an interest in girls because he is reacting to his typically developing peers, whom he wishes to emulate. It doesn’t mean that he’s emotionally ready for it, even though his body is keeping up with the typically developing peers. In fact, I also learned that in some cases, puberty in ASD kids can occur earlier than in non-ASD kids. But adolescence usually occurs later. As one of the presenters aptly put it, “Adolescence is fractured from puberty.”

Some parents don’t want to think of their ASD children as sexual beings due to believing that they will be childlike forever. This is a common stereotype about people with developmental disabilities. Other stereotypes include assumptions that they are “asexual,” that they are unable to understand sexual desires, or that they have uncontrollable sex drives. Belief in these stereotypes discourages a perceived need for sex education. But without it, ASD kids are at risk for sexual abuse, inappropriate behavior in public, and possible diseases or pregnancy. It is imperative that our ASD kids are taught sex education at a level that they can comprehend, which can be accomplished by writing an IEP goal around Health/Human Sexuality Education. Of course, it can also be taught at home. 

How do we do that? The short answer: Start young. The seminar presenters recommended starting off at an early age by teaching self-acceptance and an awareness of all body parts, including gender-specific parts. This also should include a talk about privacy and which parts should not be touched by others, etc. It is just as important to provide this information for ASD children as it is for typically developing children. They need to have this awareness. Even non-verbal children can absorb some of the information, and it may help to protect them. For their sake, we need to try.

Up next:  What to teach during puberty – self-care and hygiene, personal space, masturbation, and appropriate levels of affection with others.

His Own Terms

“I will try to express myself in some mode of life as freely as I can and as wholly as I can, using for my defense the only arms I allow myself to use – silence, exile, and cunning.”           -James Joyce

Lately Nigel has taken to expressing himself in a new way. If I ask him a question and he doesn’t feel like talking, he silently mouths the words of his answer. This only works, of course, if I’m near him and looking closely at his face, and even then, sometimes I can’t figure it out, not being a lip-reader. I suggest that he might like to write the answer down. “No,” he mouths, not using any vocal chords, not even whispering. He shuns writing with a writing utensil, preferring to type if possible, if the computer is on and accessible. He’ll offer a thumbs-up or thumbs-down if my question requires a yes or no answer. He’ll point if the question involves indicating a direction or the location of a missing item. Then, after exhausting all options for answering the question non-verbally, he’ll sneer the answer in a low voice between clenched teeth.

It’s not that he’s losing his hard-earned, long-awaited speech. It’s that he’s being selective about when he uses it. It’s as if his voice is a precious commodity and he doesn’t want to expend it uselessly, unnecessarily. There is effort involved in speaking, both in choosing words carefully and in vocalizing and making oneself heard. But many times, when he is in his social mode, like at a party, he does not use this discretion, he is not concerned with conserving his voice, and he blurts out unfiltered comments. Of course, inconsistency is one of the more dependable traits of autism.

“Silence, exile, and cunning” could also be considered traits of autism. I find myself faced with the choice of enabling Nigel by asking him questions that do not require a voiced answer or forcing him to answer verbally. Is it a need of his to be selective about when he chooses to talk? Don’t I owe it to him to respect his choices, to meet his needs? Or is it more of a want and less of a need? At this point, I’m looking at the big picture. Nigel turns fourteen in a few days. I think this may be his way of asserting his developing autonomy, and as such, it is a need. It’s a need for any teen, but especially an autistic one. He knows when he can silently mouth words, and he knows when that won’t work. He’ll do it selectively. He’s still talking, still communicating. Just doing it on his own terms.

Tilt: A Review

To say that Tilt is an engaging novel would be an understatement. This is a clear-your-schedule-so-you-can-read-it-in-one-sitting book. First-time novelist Elizabeth Burns displays her talent as an award-winning poet, creating simply stunning metaphors and lyrical prose with intricately woven images. Writing in the present tense, Burns imparts a sense of urgency that is central to the movement of the story. And what a story it is.

We readers are initially jostled between a background of Bridget, the main character, and her new home in Minnesota (where she moved from New York), a description of her parents, scenes from her first marriage, and finding out that her beloved cousin has breast cancer. We then briefly learn of Bridget’s father’s death and meet her two daughters, one of whom is autistic. The stage is set.

Burns then deftly takes us back to when Bridget met her second husband, a successful sculptor, who is the father of her children. We glimpse evocative earlier scenes of Bridget’s cousin and her father. Burns’ bouncing back-and-forth between past and present may be off-putting to some readers, but her technique only serves to build towards the upcoming chaos that will surround Bridget’s life.  Burns describes the whirlpool of anxiety as Bridget comes to terms with her daughter’s diagnosis at the time that her younger daughter is born. Her cousin dies. Bridget’s husband’s bipolar disorder becomes unmanageable and he must be hospitalized. Upon his release, she receives the news that her father has stage four cancer.

But the best part about Bridget’s character is that she’s not perfect. She may be strong, but she’s human. Her cool wit is juxtaposed with her vulnerable soul, and even with all the humor she injects into her life, she breaks. We see her naked fears and her feel her pain. But through it all runs the current of her dreams, and her determination. She learns that reaching out for help – from her support group, her therapist, and even her emotionally distant mother – is the only way to cope. Her endurance, her outlook, and her spirit are uplifting and inspiring. Tilt is one of those books that will stay with you long after you finish it.

When ‘No’ Would Have Sufficed

On a recent trip to the grocery store, I conceded to buying a tub of ice cream for dessert that night. And hot fudge. And Nigel’s favorite popcorn. Then, as we rounded a corner, he noticed some huge sugar cookies, frosted bright orange, undoubtedly full of chemicals. Of course he asked for them.

Me: Don’t push your luck.

Nigel: Stop saying that I’m “pushing” my luck; I’m actually pulling it.

Sometimes his way of looking at things just makes more sense.

Renewing My Vows

Sometimes I need a wake-up call.

Last week Nigel attended a Scout meeting, which he does about twice a month. There are four Scout meetings scheduled per month, but he can only handle two, so that’s what we do. He has been around most of these boys for a few years now, and they do the best they can to accept Nigel’s idiosyncrasies, or at least tolerate them. Most of the time, he gets through a meeting with minimal disturbances, and so I develop a sort of complacency.

Nigel had a bit of a hard time at the meeting last week, and I couldn’t figure out why. I sat on the sidelines, with a few other parents who attended, and kept an eye on him, hoping he wouldn’t get out of hand. He kept talking out of turn, interrupting leaders who were speaking, getting in kids’ faces to spout movie echolalia, making noises, and generally not participating. Generally not functioning very well. I was convinced that he had forgotten to take his medication that morning. That has to be it, I thought. Usually, if we forget his medication in the morning, by evening he is disruptive and exhibits the behaviors I described. I kept looking at the clock, hoping he would not become unmanageable, and finally the meeting ended and we went home without any major catastrophes.

When we got home I immediately checked his pill container for the day. It was empty. He had taken the medication in the morning, so it wasn’t that. What then? What had caused him to become so disruptive in a familiar environment with familiar people? And then the alarm went off in my head. My wake-up call.

This is what autism does. This is what it has always done, since he was a toddler. There are some things you can predict, some behaviors you can prevent, but some you can’t. And there will be some things, plenty of things, you can’t understand. I know this. I’ve lived this. This is autism, and it’s the reason why he acts the way he does. And medication helps, dietary changes help, and therapy helps.  Advocacy helps. Awareness helps. But it’s still there. It’s still autism.

So I dig my heels in a little deeper. Eleven years post diagnosis, I choke up on the bat, I go deep, I open my eyes a little wider. I renew my vows. We’re in this for the long haul. I know I won’t always feel strong, but I do now, and it feels good.

Doing Something

Teaching empathy to an autistic child is one of the many issues we parents face. I do so in small ways, such as reminding my son to hold the door open for someone who is coming through the same door behind him. I have him help me carry the groceries into the house. We apologize to the cat who was accidentally stepped on. I also try to get Nigel thinking in big-picture terms of empathy, such as donating stuffed animals, toys, and school supplies to a Hurricane Katrina project three years ago and having discussions about the impact of natural disasters and acts of terrorism on people and families, not just buildings.

And so when my sister had the wonderful idea of Nigel joining her for a Habitat for Humanity walk in her area yesterday, I wholeheartedly encouraged Nigel to do it. I told him about Habitat for Humanity and described other people’s living situations to him and how this organization helps. And he wanted to be a part of it.

Yesterday dawned a bit cloudy in Roseburg, Oregon, but we Pacific Northwesterners aren’t daunted by a 66% chance of rain. Nigel went out with his aunt and her dog and jog-walked the two-mile area with about 30 or 40 other participants, and they got a cool “I support Habitat for Humanity” T-shirt out of the deal. I told him I was proud of him for getting involved with a good cause. That night I asked him if he liked going on the walk.

Nigel: I didn’t mind it.

Me: Sometimes when people say they don’t mind something, it indicates that they don’t really like it.

Nigel: Well, the jogging part was a little tiring, but the walking part was okay for me. I liked that part.

Me: Did you like showing support for Habitat for Humanity?

Nigel: Well, we need to do something for the poor.

That’s my boy.