Vaccines

Often over the years I’ve had relatives and friends ask me what my stand is on the vaccine/thimerosol issue. I’ve devised my own theory.

I believe that thimerosol is partly responsible for some cases of autism. What I emphatically believe is that in the last thirty years, large amounts of chemical toxins in our environment (including our food, air, and water) are contributing (not causing, but contributing) to the increase of autism cases, along with increased awareness for diagnosing the milder cases. Thimerosol in vaccines is included on my list of chemical toxins. But I certainly don’t believe that all cases of autism were caused by thimerosol.

When I was six months pregnant with Neil, I experienced pre-term labor and was hospitalized while I received terbutaline intravenously. I have often wondered if the presence of this chemical affected Neil’s development in utero. I believe he was genetically predisposed to autism, and the introduction of harsh chemicals through medication I received as well as the aggressive inoculation program thrust upon him after birth caused him to develop autism. It was the combination, not just one or the other.

Hence the variance of the spectrum. I think this theory also helps to explain why some children who are significantly impacted by autism can, with therapy, progress to a point of being less severe in some areas, while others do not. It also explains why some autistic individuals respond so well to GF/CF diets, while others do not. Autism manifests itself differently in each individual because there are so many different causes and contributing factors.

I hope I live to see the day when we understand more of the complexities of autism, and maybe have some concrete answers. But for now I’ll have to be satisfied with my own interpretations, which will more than likely continue to evolve. What are yours?

Image credit: Christophe Libert 

Music

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 Neil, 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, Neil 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, Neil 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.

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.

Image credit: Olga Abolinya

Obsession of the Week

Most individuals on the spectrum have what many call “specialist subjects.” These are topics of on-going interest, over long periods of time, that sometimes increase in intensity for various reasons and then abate for a while, but never go away. They usually cover a general area, such as dinosaurs, computers, video games, or in Neil’s case, natural disasters. He has been interested in natural disasters since he was six years old and I allowed him to watch the movie Twister, which fascinated rather than scared him. Ever since then, he gravitates toward those types of movies and books, and he has expanded the topic to include “unnatural” disasters, such as the sinking of the Titanic. But sometimes these side interests turn into what I call the Obsession of the Week. They hit like a tornado, consume everything, and then they die down.

Obsessions of the Week literally consume him. He can think of nothing else, he does extensive internet searches on the topic, he can talk of nothing else, and I’m sure he lies awake into the wee hours imagining himself immersed in the topic. It is an obsession. His past Obsessions of the Week include Indiana Jones (Neil became a Boy Scout because Indiana Jones was one), going to Mexico with his classmate’s family (somehow he thought it would be okay for him to go with them on an international family trip), running his own Jurassic Park (because of the movie, he believes that dino DNA can be extracted and used to breed dinosaurs),  and taking four fellow Boy Scouts on an Oregon Trail trip, starting in Independence, MO, where they will purchase oxen, supplies, and materials to build a wagon.

I have often wondered where these obsessions come from and how he can become so caught up in them. What purpose do they serve? Is it because now that his imagination is functioning that he’s making up for lost time? Is it because he had to learn to filter out the things that plagued him that he learned to put intense focus on the things that bring him joy? I’m not sure. I do know that even with the problems associated with his obsessions (difficulty transitioning from an obsession-based activity to a non-obsession-based activity, difficulty communicating with him when in obsession-mode, concern about him not getting enough sleep), I still welcome them for several reasons. They motivate him. They encourage self-esteem. They keep him productively occupied. They inspire him. They educate him. They give him something to talk about. All of these things are so important for an autistic teen.

The Obsession of the Week last week was King Kong. We had to rent all versions and sequels of the movies and checked out a book at the library on King Kong cinematography. He put in a request for a King Kong stuffed animal. He watched King Kong-related YouTube videos. He built King Kong scenes out of Lego. He perfected primate chest-beating.

And now we are into a new week. His father, who lives 700 miles away, is visiting, as he does several times a year, so Neil is happily focused on spending time with him. They are bowling right now. The only problem is that his dad brought his really cute black cocker spaniel puppy with him on the visit. And Neil loves him. I think I know what the next Obsession of the Week will be.

Medication

I struggled with this one for a while, not just for Neil but also for myself.

In late 1997, after crying one afternoon because I could not stop rearranging the chairs around the kitchen table, I realized that the anxiety wasn’t going away on its own. I had several other symptoms as well: peeling skin off the bottoms of my feet until they bled, systematically pulling out my hair, and chronic insomnia. I finally went to a doctor and was diagnosed with obsessive-compulsive disorder. The ‘when it rains it pours’ adage is unmercifully true: my diagnosis came one month before Neil’s autism diagnosis and my husband’s announcement that he wanted to be separated.

For six months prior to obtaining medication for myself, I had struggled with believing that it was necessary, that it wasn’t a sign of weakness. The doctor had to remind me that if something was wrong with any other part of my body, I wouldn’t hesitate to obtain the medication I needed. If I had a heart disease, I might need antiplatelet drugs. If I were diabetic, I would need insulin. I agreed to a low dosage of an SSRI, and I experienced relief from my symptoms within days of taking it. I took it for a year and a half.

Within the past year, I had noticed that Neil exhibited signs of anxiety, possibly OCD. He pulled out his hair so much he would create bald spots. He would rub his lips so hard that  he had rough, bleeding patches around his mouth. He had chronic insomnia. I had thought that his anxiety was environmental, due to the constant stress of the middle school. When I pulled him out of the school, his lips/mouth area improved, but he still had insomnia. And the worst thing was that not only was he still pulling out his hair, he had started eating it. I knew then that, even though he was only thirteen, he needed medication. Also, I have read that autistic teens are highly susceptible to depression, and with that running in our family as well, I figured getting him on medication now might cut the depression off at the pass. There are some in my family who think I jumped the proverbial gun, that he’s too young to be on medication, that I should wait and see. But pulling out your hair and eyelashes and eating them indicates a definite need for medication, and I do not regret my decision.

I am happy to report that Neil is sleeping much better now and has a full head of hair. Life goes on. And I am far too busy to be rearranging the chairs around the kitchen table, thank God.

Image credit: Patricia Yliniemi

Seizures

Neil has never had a seizure*, but I have heard and read over the years that adolescence can bring on seizures in previously seizure-free kids. And the possibility has filled me with fear.

Two years ago, one of my co-workers was running some errands on her lunch break, and she had a seizure while she was backing her car out of her space in a busy parking lot. No one was hurt and there were people around who helped her, but it got me thinking and worrying. What if Neil had a seizure while riding his bike? Just in the past few months I have become secure enough to let him ride his bike alone around the neighborhood. He craves some independence, and so I hold my breath while he is gone for half an hour, hoping he’ll watch for cars, remember to stop at corners, not run into anyone or anything. Not have a seizure. It’s hard to completely let go like that and just trust.

When my co-worker returned to work the next day, my boss made sure that all of us were informed about what to do if a seizure occurred in the office (the co-worker had not previously disclosed that she had epilepsy). We learned to not restrain her, and to remove any sharp objects in the area. Afterward, we should lay her on her side to maintain an open airway and prevent inhaling any secretions. We learned that she may experience confusion and that someone should stay with her.

According to Autismuk.com, Roughly 30% of autistic adolescents have been reported to develop seizures. That’s too high a percentage for my comfort level. But I guess if Neil did start having seizures we would just deal with it. We’d do what we needed to do, just like we’ve done all along with every other issue that’s come up.

And I would do what I’m doing now: solicit advice from those who’ve been through it. Are there any readers whose children developed seizures in adolescence? Do your children take any medication for it? Please contribute your experience and suggestions. I appreciate your input.

*UPDATE* Neil had his first seizure, a grand mal, in June of 2010. He has had many since then and has been diagnosed with epilepsy.

Image credit: artM

Bravery

Every few years I undergo a relatively drastic hairstyle change. Sometimes it is circumstantial: I am experiencing major changes in some other area of my life, and my hairstyle change is symbolic of that. At other times it’s because my hair is down to my lower back, and it’s just too much work at that length! Off with it!

Last week my hair was reaching beyond the middle of my back, the sun was out, and I had it cut. I think this time it was as much because it was too long as it was a metaphor for the changes going on in my life. I came to the realization a few months ago that Neil can no longer be mainstreamed, as he was (with an extensive support system) for four years. I radically altered my life, my schedule, my finances, and my ideas so that I could wrap my mind around the concept of homeschooling him, and found ways to make it happen. (I plan to write about that subject in detail for a future post.) And now I am doing it. I drastically cut back on my hours in the office at my job, I found some work I can do from home, and I am now my son’s teacher.

It was a huge change, and I am still reeling from it, even though it is positive. It is scary financially, since I am a single parent. And it comes with so many other adjustments that must be made: emotional, physical, social. So when I’m at the hair salon, and the other patrons and stylists who witness my middle-of-the-back hair being cut into a chin-length shattered bob comment on how brave I am to do that, I say It’s only hair.

Getting my hair cut short doesn’t make me brave. Being a single parent? Sometimes brave. Raising an autistic child and his younger brother? Usually. Homeschooling my autistic son while being a single parent? Reducing my work hours from 30 hours a week to 6, thus reducing my income?

And then I think of Neil, trying to navigate middle school without any support system in place (how could I have let the IEP ‘team’ convince me that he would be fine with that?!) and dealing with the constant harassment and bullying he experienced, just trying to get through his day, pulling out his hair because of the eternal state of anxiety he was in, and I know. He is the brave one. He was brave to make that first leap to try to learn to talk by repeating lines from videos, trying to fit the lines within the context of the real situation. He was brave to learn how to filter all the sounds that were agonizing to him. He was brave to want to take the regular school bus, because he wanted “to be like everybody else.” That’s all he wanted, and they treated him so terribly. Yet he went back, every day, and he always tried so hard. Finally, he reached his limit, and he begged me to homeschool him. That was brave too.

Maybe the little things like getting my hair cut short are brave. But when you live with autism, it puts a different perspective on things. And it makes you define bravery in a whole new way.

Image credit: Photo by Gerla Brakkee 

Autism Acronyms

Life with autism is full of acronyms. From the first IFSP (Individualized Family Service Plan) meeting and the use of PECS (Picture Exchange Communication System) to the last IEP (Individual Education Plan), we SPED (Special Education) parents are bombarded with a list of acronyms to learn and use. It seems like such an odd element of an already challenging existence.

I remember being at Neil’s first IFSP meeting, when he was three. I felt overwhelmed and underinformed. Back in 1997, autism was not the buzzword it is now. Most parents of now-teens experienced untold frustration trying to research autism information, therapy, symptoms, etc., when their children were first diagnosed. The internet was not the resource it is today, and all the books I could find on autism were archaic, bleak, and (I felt at the time) of no help to me. My local Barnes & Noble had two books on autism: Let Me Hear Your Voice, by Catherine Maurice, and The Siege, by Clara Claiborne Clark. I flipped through both of them there in the store, got a lump in my throat, felt the desire to slip into denial (the ‘how could he be autistic? he smiles and lets me hug him!’ self-talk), and left. I did wind up reading those books at a later date, and I came to consider them an invaluable source of encouragement. Back then I wasn’t ready.

I went to that first IFSP meeting blind. The therapists started talking about PECS, SI (Sensory Integration), and OT (Occupational Therapy) and I was completely lost. It wasn’t until months later that I learned that the intensive program that Neil was enrolled in was actually ABA (Applied Behavior Analysis) -based. I learned about various other therapies, including AIT (Auditory Integration Training), FC (Facilitated Communication), and later, the GF/CF (gluten-free/casein-free) diet. When I had internet service I looked up the DAN (Defeat Autism Now) program and joined ASA (Autism Society of America) and read about the federal Individuals with Disabilities Education Act (IDEA). I needed a glossary to keep them all straight.

Now when I go to my local Barnes & Noble, there is an entire section devoted to autism-related topics, not just two books mixed in the Special Needs shelf (yes, in 1997 there was only a single shelf for all books on special needs children). And now on their website, under the category of Autism and Asperger’s Syndrome, there are 26 subtopics listed and 462 individual books available having to do with autism. That is amazing to me, and wonderful. And many of them have glossaries defining all the autism acronyms I’ve come to know and love.