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.

*Taking a Bow*

Yay – I’ve received another blog award, and it’s a pretty one! 

Proximidade award

Approximate translation from Portugese: “This blog invests and believes, the proximity!” Closeness, maybe? Anyway, big thanks to Hellokittiemama, my advocacy hero at The BonBon Gazette, who has kindly bestowed this lovely award upon me. I am honored to pass it on. First, a required description:

“These blogs are exceedingly charming. These kind bloggers aim to find and be friends. They are not interested in prizes or self-aggrandizement. Our hope is that when the ribbons of these prizes are cut, even more friendships are propagated. Please give more attention to these writers! Deliver this award to eight bloggers who must choose eight more and include this cleverly-written text into the body of their award.”

And now, my picks:

Hats off to all!

Right on Schedule

The future will arrive when it’s ready. Whether it seems so or not, your life is right on schedule.                                       –clipped from an old horoscope, author unknown

I have spent most of today thinking about the future, specifically, thinking about the subjects of yesterday’s post. I sat at my desk for an hour last night writing it, carefully wording what I meant to convey, not sure if I was doing it right. What I neglected to say was this: Even if Nigel doesn’t progress any further, even if he hadn’t progressed to the point where he is now, I would be fine with that. I hope for his progress, but not because I want him to change. I am so happy with him the way that he is, the way that he’s always been. I hope for his continued progress because it would open more doors for him. It would enable him to experience more of life, and that is what he wants, and I want that for him. We all dream for our children. Autism doesn’t put an end to that.

And so this morning, having been up late thinking about what I had written, obsessing about the future, I came and sat down at my desk, my big L-shaped desk with all my projects spread out all over it, and my framed family photos of my loved ones smiling at me, and my soothing candles and bamboo, and my eyes fell on that little quote I had taped to the bottom of my monitor. The future will arrive when it’s ready. I needed that reminder today more than I usually do.

Whether it seems so or not, your life is right on schedule. And so is Nigel’s.

The High Functioning Threshold

I recently came across this survey taken by one of my favorite sites for autism information, Natural Learning Concepts.

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

 

WHEN MY CHILD IS AN ADULT, HE/SHE WILL:

1. Live independently 8 Percent
2. Live independently but require minimal support 42 Percent
3. Live in a group home 14 Percent
4. My child will probably never leave home 36 Percent

 

These results intrigue me, and make me wonder two things. First of all, how old are the children of the parents surveyed? I know that my answer would vary depending on the age Nigel had been at the time I was asked. Between the ages of three and seven, I would have chosen #4, My child will probably never leave home. Between the ages of eight and thirteen, I would have chosen #3, Live in a group home. But now, as he nears fourteen, I might possibly choose #2, Live independently but require minimal support. Or, it might be #4 until his late twenties-mid thirties, and then #2.  And then, as I look back at how far he’s come and dare to dream about how far he might be able to go, I wonder if the possibility exists that in a few years I could actually answer #1, Live independently. As the years have gone by, his functioning has gone from fairly low to moderate to fairly high. What if he continues to improve? What is his true potential?

And this brings me to my second question: At what point do we say that someone is high functioning? The definition is rather subjective. I have acquaintances who’ve said to me, “How wonderful that Nigel’s so high functioning!” But I think, if he were so high functioning, wouldn’t he be able to be mainstreamed? Wouldn’t he be able to make it through a typical school day? At this point, he talks HFA (high functioning autistic). His sensory issues, so severe in the past, are now at a manageable level. So how do we quantify our child’s level of functioning? Where is the high functioning threshold anyway? At what point do we know that our children have crossed it? And what does that mean for them and their future? Trying to make their way in this world that could easily take advantage of them? What does it mean for us, their parents?

Of course, if Nigel were still non-verbal or still had severe sensory issues, I would not be asking these questions. I would choose answer #3 or #4, as I would have when he was younger. I would still think about his future, of course, and mine. I would obsess about finding a good facility for him. I know that it would not be easier, because I had been in those shoes for several years. But it would be different. My concerns about my son’s future are different now than they were before he began reaching for the high functioning threshold, but no less worrisome, no less consuming.

And so, regardless of our children’s age, regardless of their functioning level, we all face the question posed by Natural Learning Concepts regarding our children’s future. We all wonder and worry. Some parents’ worries evolve and change, and some are unique to their own circumstances. But we all face the prospect of how autism will affect our children’s futures. We all have our own suitcases to carry. And whether we cross that threshold or whether we’re at the opposite end of the spectrum or somewhere in between, we still face this challenge. And that is no small feat.

Driving Force

I’m always looking for fun activities the whole family can enjoy that won’t aggravate my son’s sensory issues. So imagine my shock when it was discovered a few years ago that Nigel could actually handle game arcades. Not just the sounds of video games bleeping, but also louder shooting sounds, rolling skee-balls, flashing lights, and being jostled and bumped by strange people. Of course, this sensory processing ability occurred right around the time that he also became able to sit in restaurants. Something clicked and he was able to filter out the sensory issues that had previously been so agonizing for him. It was a relief for all of us. And it opened a lot of doors for activities in which he could participate.

Going to the local Family Fun Center turned out to be one of them. I was a bit nervous the first time I took him there, since the entrance takes you right through a noisy, bustling arcade, but I think my son’s excitement cancelled out any sensory issues he might have experienced. He also had his form-fitting fleece hooded jacket on, and that helped to muffle the sounds. It amazed me to see him handle all the stimulation. After some time in the arcade, I took him outside to the go-karts. He had previously been a passenger on other amusement-park driving rides, but he was tall enough at age eleven to drive his own car, and very excited to do it. As we approached the go-kart area, I coached him about not crashing into the other cars, and to keep going in the same direction. I had purposely arrived first thing in the morning, hoping that there would be fewer people driving at the same time, and I was glad to see that my plan worked. The attendant let us through the gate and told us to take two cars in the front. As soon as Nigel climbed into his car, he took off! He just pushed the accelerator pedal and off he went! The attendant started yelling after him to stop, but Nigel didn’t respond – he just kept going! I quickly informed the guy about Nigel’s autism and told him that this was Nigel’s first time driving and he didn’t know to wait. The guy seemed to understand. He waited for Nigel to finish the lap and then flagged him over so that he could put on his harness. Then he continued for the remainder of the allotted time with me following in my car. Nigel smiled and laughed the entire time. Not only that, he drove just fine.

That was three years ago. Nigel is practically a pro go-kart driver now. He knows to put on his harness and wait for the attendant to say when to start. He doesn’t crash into anyone. Furthermore, he even knows how to block other cars from passing him! We just went go-kart racing yesterday, and he beat me again! But the best part of all is how much he enjoys driving those go-karts. I loved being right behind him, seeing his huge smile every time we rounded a curve.

  • Four people to take one 6-minute go-kart ride: $24
  • Everyone, including Nigel, enjoying it: priceless.