Teen Autism

First days of school are nerve-wracking for lots of people, but especially for those with Sensory Processing Disorder. Most ASD people have some type of SPD (or several), but there are also many people with SPD who do not have autism. Aidan is one of them.

In the beginning, of course, I did not know this, but early on I thought he might have something I read about called “low sensory threshold.” He cried when I held him, he cried when I put him down, he cried in the baby swing, he cried in the car, he cried in stores, and he cried at home. He cried about 80% of his waking life. I did not know what to do for this child. The crying was so extreme that it prompted his two-year-old autistic brother to speak one of his first words: “cying.” He was trying to say “crying” but couldn’t get the “r” sound. “Yes, Aidan is crying,” I would tell Nigel.

Aidan was about one and a half when Nigel was diagnosed with autism. At the time, I thought about the fact that Aidan was also not making any attempts to talk and had very sensitive hearing, like Nigel. I wondered if Aidan also had autism. There were many who suggested that Aidan was simply mimicking his older brother, but the signs were there even when Nigel was elsewhere. Nigel’s autism was more on the severe side as a young child, fairly obvious once diagnosed, so if Aidan did have some level of autism, I thought it might have been PDD-NOS. Trying to be objective, I looked at the differences in my sons’ behavior. Aidan made eye contact. He knew how to play with toys. He did not stim. He was just always crabby about something. So PDD-NOS did not seem correct. But what, then?

When Aidan was three years old I was able to enroll him in the same early intervention program that had been so beneficial for Nigel. The therapists evaluated Aidan and informed me that he had problems with sensory integration (SPD hadn’t been coined at the time) and a developmental delay in language. They provided OT and speech therapy, which seemed to help him. But it wasn’t until he was five that Aidan seemed to tolerate his body and his surroundings better. He finally seemed happy.

Aidan continued to receive speech therapy until he was almost ten, and I could tell he was glad when that was behind him. He is now IEP-free (yes, I did the happy dance when I left the last meeting, because now I only have one child with an IEP) and does quite well in spite of the fact that he is the pickiest eater in all of southern Oregon (at least) and hates wearing shoes because “they smash my feet.” He constantly complains about smells that no one else smells, he wears the same clothes for days on end because they’re the only ones he feels comfortable in, can’t stand having his hair brushed, gets carsick, and won’t tie shoelaces or ride a bike. But at least he no longer cries 80% of the day!

And so I was a bit concerned about Aidan’s first day at a new school. School in general can be a pain for SPD kids due to the potential for sensory overload. I drove Aidan this morning so he wouldn’t have to “process” the bus yet, and I think that helped to ease him into the first day. He said the lockers aren’t so bad, and he assured me that he didn’t buy anything at the vending machines. He didn’t get lost, and he got on the right bus to come home. Best of all, he didn’t get carsick!

Added 9/13/08: an informative SPD site - click here

Nigel and Aidan felt their first earthquake yesterday! For someone with a lifelong interest in natural disasters (Nigel), it was an exciting experience. I couldn’t wait to hear Nigel’s reaction, and we had another great phone conversation.

Me: How did it feel to you?

Nigel: Very short but very shaky.

Me: Were you scared?

Nigel: 5.8 usually shakes things off the wall.

Me: I read online that it actually was a 5.4.

Nigel: The news on TV said it was a 5.8.

Me: That was the initial reading, but they revised it later. So what did you do?

Nigel: We went outside to avoid it.

Me: Were you scared?

Nigel: Um . . . I wasn’t scared, just a little shaken. You know, nerve-wracked.

Me: Earthquakes will do that to you.

Nigel: How big was the first one that you felt in your childhood?

[I then described to Nigel some of my experiences with earthquakes.]

Me: What was your first reaction when you felt the shaking?

Nigel: At first I wanted to duck and cover.

Me: What did you do after you went outside?

Nigel: We went to the beach.

Me: After the earthquake?

Nigel: Yeah. That’s what we were getting ready to do before the earthquake.

A little Shake n’ Bake, anyone? First earthquake, then beach. That’s life in LA for you. 

More development, more nostalgia:

Nigel turned six a month ago. Not an hour goes by that I don’t think about his disability. There are moments, yes, that I can just enjoy the life we do have, the accomplishments he has made, and for a moment convince myself that our lives are not defined by autism. I can usually find some time at home each day when I realize that we have all been functioning at our own version of normal, and everything is good. Even just for ten minutes.

But Nigel is learning and growing as I thought and hoped he would. I hope one day to converse with him on a level higher than “Would you like a sandwich or scrambled eggs for dinner?” But for now, the fact that he can answer me is wonderful. He rarely screams at home anymore.

This year Brian [my then-boyfriend] and I took the boys on their first camping trip. We went to the coast and got rained out, so we just drove until it stopped raining and ended up at a park/campground in Grants Pass. As we were unpacking the car, every minute or less we would hear the roar of some type of vehicle pass nearby. First I thought it might be low-flying planes, then I thought the campground was next to a freeway and that the noise was caused by trucks roaring by. But it was louder than that. The sound was invasive, jolting. Each time one would pass, Nigel would nearly go into convulsions of fear and sensory overload. This went on for about ten minutes, and I knew we would have to leave if it didn’t stop soon. I ran down a path through some thick bushes and came out on the banks of the Rogue River. About ten seconds later a speedboat roared by, followed by another. I went back and told Brian what was making the noise, and we figured it would be over soon. Apparently there was a race going on, called Boatnik. Brian thought the boys would like to go down to the river to see the boats, but I thought that would make it worse for them to be so close. I was wrong. As soon as Nigel saw what was making the noise, his fear was gone and he enjoyed watching the boats while covering his ears. He even joined Brian in cheering them on! His capacity to adjust to his disability truly amazes me.

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.

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.

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.

There has been so much research done on music as autism therapy that I couldn’t possibly address the multitude of positive effects from it in one post. What I will do here is discuss the effects that I have seen with Nigel, including increased verbal skills, better sensory integration, and calming influences.

According to the Autism Research Institute, “Autistic children have also made enormous strides in eliminating their monotonic speech by singing songs composed to match the rhythm, stress, flow and inflection of the sentence followed by a gradual fading of the musical cues.” In his early years, Nigel watched a ton of Disney videos from which he learned to use echolalia as a means to communicate. These Disney videos also had songs that he would memorize that taught him rhythm and voice inflection, and from them he gradually gained the verbal skill of using his own words.

As he got older, Nigel began to pay more attention to the music I listen to, which is a mix of classic rock, alternative, techno/dance, world, celtic, and more. I noticed that the categories that feature harder, faster beats (some rock and techno) seemed to help with his sensory integration. He learned how to filter sounds that previously had caused him to go into sensory overload, like air hand driers in public restrooms and other loud, mechanical sounds. And now, he likes the music for its own sake; he rotates his favorite CDs on his own stereo (mostly movie soundtracks like Twister, Back to the Future, and Cars) and sings along.

When he wants to unwind and relax, he turns to some more of my music. I am happily employed by a company called New Earth Records, a spiritually conscious music label specializing in New Age, world, trance, healing music, and Osho meditations. Nigel enjoys the beat and different instruments (sitar and sarangi) of James Asher’s Tigers of the Raj, the relaxing trance rhythms of Cybertribe’s Immortality (Nigel says: “It relaxes away the stress of the day”), and the beautiful melody of Lisa Lynne’s harp on Love & Peace. When I put on Deuter’s Sun Spirit, Nigel commented how much he liked the cover (Van Gogh’s “Olive Trees”) and said that the music made him feel “like you’re in the Renaissance.” Another title of Deuter’s that I play is Earth Blue, which makes Nigel say, “I feel like I want to sleep.” For someone with occasional insomnia, that’s invaluable, as are all the benefits of listening to music.

I highly recommend playing music for an autistic child (and every child), not only as an effective therapeutic device, but also for the soothing value of it. Music adds to the quality of one’s environment and life in so many ways.