Tag Archives: Special Interests

Love to Perseverate: Rare Diseases

This week at the spin cycle, we share something we love that everyone else seems to hate or something we hate that everyone seems to love. When it comes to interests and hobbies, my famiy is quite diverse. I, like my mother, am into crafting and reading. Like my father and possibly my husband, I like learning all kinds of new things from Wikipedia or the university library. I, however, am the only one who is interested in psychology and particularly psychiatry. It could be because I’m a nut case myself, though I also love learning about other fields of medicine.

It is not a terribly uncommon interest, but it just sounds weird saying you’re interested in rare diseases. Like, I can’t bring myself to like pages on Facebook on diseases that aren’t at least remotely related to my own conditions, just in case my family believes I’ve decided I have Zellweger Syndrome. For your information: this is a debilitating genetic syndrome from which affected children die early on.

Many people do read inspirational books by people who’ve overcome tragedies, including rare diseases. Brain on Fire by Susannah Cahalan, which I just finished, was a bestseller in the United States and possibly in the Netherlands too. I read the Dutch translation, because my BookShare account has still not been activated (still waiting on my doctor to write the proof of disability thing) and I didn’t want to buy the eBook when the Dutch audio book is available at the library for the blind for free. Anyway, while many people read the book, I’m sure most people didn’t remember every tiny detail on Cahalan’s condition, except for those who think they or their relative might have the same disease. And just so you know, Cahalan does link her condition, anti-NMDA receptor encephalitis, to some diagnoses of regressive autism, but I have no reason to believe I have this condition.

In Brain on Fire, Susannah Cahalan, a reporter at the New York Post, describes the process of her sliding down into madness. For a month during the spring of 2009, for which she herself has no memory, she has seizures and psychotic symptoms and finally becomes catatonic, hardly able to move or talk. Because her parents insist that she be hospitalized on a neurological unit, she is admitted to NYU Medical Center. There, neurologists and psychiatrists are completely baffled as to what is wrong with her. One diagnoses post-ictal psychosis (psychosis after an epileptic seizure), the next diagnoses schizoaffective disorder, and so on. Finally, Dr. Souhel Najjar joins Cahalan’s team after her previous neurologist gives up on her. Najjar thoroughly examines Cahalan and finds, when he asks her to draw a clock, that she places all the digits on the right side of the clock. This causes Najjar to realize that in fact Cahalan’s right brain hemisphere is seriously damaged. It isn’t saidhow he realizes that, in fact, her brain is on fire, being attacked by her own body. It also isn’t too clear what ultimately leads to the diagnosis, because Cahalan gets a brain biopsy but she later writes that only a small portion of people with anti-NMDA receptor encephalitis get brain biopsies.

The NMDA receptor, Wikipedia tells me, is a specific type of receptor for glutamate (a very important neurotransmitter). It is important in learning and memory. When antibodies attack this receptor, the disease Cahalan suffered occurs. Some people experience flu-like symptoms or headaches weeks or months prior to onset of the characteristic symptoms. Usually, the disease starts with behavior changes, which may vary depending on the patient’s age. Children may show violence and increased agitation, while adults may experience psychotic symptoms. As the disease progresses, symptoms may include paralysis of one side of the body, jerky movements (ataxia), autonomic dysfunction (problems with heart rate or blood pressure), or catatonia. These symptoms require urgent medical attention, because the patient may slip into a coma and die.

The book is much more intriguing than my boring summary of Cahalan’s disease. I just love perseverating on rare diseases, like I said, and this is the perfect opportunity.

Unusual Fascinations and Fears in Autism #AtoZChallenge

Welcome to the A to Z Challenge on autism, day 21. Today for the letter U, I will focus on unusual fascinations and fears in autistic people. This is mostly a personal post.

Many autistic people have one or more special interests that they obsess over. In the previous edition of the psychiatrist’s handbook, the DSM-IV, these interests were said to be abnormal either in intensity or focus. I discussed intensity when I talked about obsessive and compulsive behaviors. Focus refers to an interest in an abnormally narrow aspect of a topic. For example, I used to be interested in public transportation, but only insofar as I could memorize bus and metro routes.

Another DSM-IV criterion of autism was an unusual fixation on (parts of) objects. This could include collecting a specific object, as I discussed before. It can however also refer to fixation on parts of objects rather than the whole. A classic example of this is a child who spins the wheels of a toy car compulsively rather than playing with the toy.

Unusual fears are also common in autistic people, particularly those with emotion regulation problems (such as people with McDD). A person with autism or a similar condition often creates illogical relations and jumps to irrational conclusions. For example, Gunilla Gerland wrote in her book A Real Person that she thought that her sister would come home if the newspaper lay in a certain position on the table, so when someone moved the newspaper, she thought her sister would never come home again. In a Dutch book on autism, I read about a boy who heard a grey wolf had been seen somewhere. He was afraid that the wolf would come into his home, even though it had been seen nowhere near his city.

I draw similar conclusions which lead to fear. For example, in our apartment, my husband and i have a taxus on the balcony. Since I know taxuses to be poisonous, I don’t want to go on the balcony, fearing that somehow this taxus thing will kill me.

Fear-inducing things or situations can also be a person’s special interest or fascination. For example, I used to be fascinated by the Brazilian wandering spider, even though I was also fearful of it.

Of course, magical thinking and related fears are common in typically developing children too, but in autistics, they last much longer. Autistic people may also benefit from a different approach to reassurance. The boy in the Dutch book, for example, was reassured when he’d read an encyclopedia article on wolves, even though the article had quite gruesome details in it.

Ten Patches This Autistic Person Could Use

The Golden Spoons

This is my first time participating in the Tuesday Ten. I’ve been wanting to for a while, but usually I found other things to blog about on Tuesday. Either that, or I simply forgot. The theme for this week is “I need a patch for that”, because this is the weird holdiay celebration tomorrow. Lisa of The Golden Spoons, one of the hosts, wrote ten patches every mother needs. I got thinking about that. I’m not a Mom, so I can’t really expand on those. Then I got thinking: what would I like patches for? And here’s a list of pathes this autistic person would need. Some of them can be seen as “cures” for certain symptoms of autism, while others are work-around patches and still others are patches for the social stigma and misunderstanding I encoutner.

  1. An anti-overload patch. Even though traditional autistic advocates say they would never take medication to hear or feel less, I certainly would. The thing about a patch, however, is that I can put it on and take it off again, unlike the daily medication I currently take for overload-caused irritability.

  2. An energy patch. Stole this one from Lisa, but I too think I could benefit from it. Living as an autistic can be quite exhausting, after all.

  3. A tolerance patch. To put on others when they have a strikingly intolerant attitude. Mostly staff, that is, so I don’t know how I’d get them to put it on, given that their attitude would prevent them from seeing they need it.

  4. A translation patch. I usually misunderstand people and, rather than putting on a “communicate like a neurotypical” patch, I’d like a translator that sits between me and the neurotypical.

  5. An easy text-to-speech patch. While we’re communicating anyway, I’d like to be able to write rather than speak. While text-to-speech apps are already available, I’d like one that I can easily use and that doesn’t make me look like a weirdo. I’d also like it to translate from speech to text (or braille, in my case). I’ve honestly been thinking of wanting a Communicator, which is a device used by deafblind people, but they’re very expensive and I’m not eligible for funds. i’m verbal, after all.

  6. A patience patch. Again, this one is stolen from Lisa, and I’d like to put it on others again, though I could myself use some patience at times.

  7. A perseveration patch. The good thing about patches again is the ability to put them on and take them off. Today, I’ve been looking everywhere for some perseveration, while at other times, I’m totally immersed in my special interest.

  8. An antidepressant patch. I don’t suffer from clinical depression, but I do have days when I’m very depressed. Again, like the anti-overload patch, this would seem like a better alternative to my current daily antidepressant.

  9. A patchwork weighted blanket: Lisa said patches can be any sort, so patchwork quilts are included. I’ve always wanted a weighted blanket, but never took the effort to find myself one.

  10. An executive functioning patch: something like an anti-procrastination patch, but it’ll also break down difficult tasks into smaller, easy-to-follow steps.

Note that every autistic person is different. This is why I referred to “this autistic person” in my post title rather than “every autistic person”. If you’ve met one autistic person, you’ve met one autistic person, after all. If you’d like to contribute what patches you could use in life, write a list of ten and hop over to Lisa’s blog to submit it.

Autism, Special Interests, and Elevated Moods

Many years ago, I read an article on Suite101 or About.com or the like that discussed similarities between Asperger’s Syndrome and bipolar disorder. The parent who wrote the article described her son’s mood swings from elated to depressed. However, she realized that these mood swings were related to whether the son could engage in some special interest.

I find the same thing happen to me, but in my case, it also ties in with the dissociative or emotion dysregulation symptoms. I find that when I’m in a particular personality state, I engage in a certain special interest a lot more than when I’m in another state. For example, Clarissa is my blogger part, who is behind most of the posts on this blog. Annemiek is my crafter. And I at this point can’t think of anyone else.

Getting back to mood swings, I must say that I get very elated when I engage in a particular interest for a certain period of time. I uttered the phrase that I would’ve been manic if I experienced this (mania) at all. In a way, this is extremely inappropriate and comparable to when a currently mentally healthy person talks about “going all OCD”. I in no way want to say I suffer from bipolar (hypo)mania, but these mood swings do get problematic at times.

For example, last night I didn’t sleep at all. I spent around $80 on useless online services without even bothering to read the not-so-fine print that clearly said these services would not be working for me. I actually took a PRN Phenergan at 2:00 AM, before I went ont he shopping spree, but swung right through it. Phenergan, for those not familiar with it, is a strong tranquilizer or low-potency neuroleptic. I’m now relatively calm again, so again I in no way mean to compare myself to people who have these experiences for weeks on end, but I do see actually how this could become a problem.

So, should autism parents limit their children’s special interests in order to prvent this from happening. I don’t think this is universally the case, but parents must teach their children about time and money management. I, having been pretty stingy as a child and teen, never really had to learn about this. I always had enough money on my hands anyway. I actually must say I have no clue about budgeting, and really don’t know whether I need to learn it yet. I guess so.