Tag Archives: Misc. Autism topics

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 Nigel, I experienced pre-term labor and was hospitalized while I received terbutaline intravenously. I have often wondered if the presence of this chemical affected Nigel’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 severely autistic children can, with therapy, progress to mid-functioning or even high-funtioning levels, 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?

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 Nigel’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 (Nigel 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 a 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 Nigel 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 Nigel loves him. I think I know what the next Obsession of the Week will be.

Seizures

Nigel 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 Nigel 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 occured in the office (the co-worker had not previously disclosed that she was epileptic). 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 25-30% of autistic adolescents have been reported to develop seizures. That’s too high a percentage for my comfort level. But I guess if Nigel 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* Nigel had his first seizure, a grand mal, in June of 2010. He has has many since then and has been diagnosed with epilepsy.

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 Nigel’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 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 Nigel 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, 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.