Showering Shatters the Senses

In no area (except maybe movie tastes) are Carl and I more different than in our opinions on showering.

Carl has a shower obsession. Since his first shower at 8, he has entirely fallen in love with them. He showers twice a day, and sometimes three times if mom will let him. He’ll easily spend half an hour to an hour in the shower, usually consuming all the hot water. He’s morally opposed to soap and shampoo, but he probably wouldn’t notice if we switched brands.

I, on the other hand, loathe showers. My first successful shower (as in I did not run from the bathroom screaming, crying, and not even slightly clean) was when I was 17 years old, and that was only because I knew dormitories didn’t have baths. I can’t stand the feel of the water on my face, knowing that the temperature of the water is liable to change at any moment, or the simple fact that showering must be performed stark naked ( I realize bathing must be as well, but the enveloping warm water almost feels like clothes). I will only tolerate 3 brands of shampoo, and one conditioner (which is no longer being manufactured. I own 12 bottles and am always on the look out for more so that it will be a very long time before I need to switch). I shower as few times a week as possible, and will admit that during a partial nervoud breakdown last year, I went 18 days without showering (no wonder my roommate and I didn’t get along).

I’ve heard that showering is a very common issue for Aspies and autists, and I think this is mainly a sensory defensiveness issue.  One tactic which helped acclimate me was long periods spent sitting in front of a sprinkler. I would hold my face into the water stream for as long as I could stand then remove it, wait, and dunk in again. I kept doing this until I made it to a seven-minute period (with gaps for breath and such), and then I was able to take my first successful shower.

But boy I wish the dorm would install a bath…

A “Magic” Solution for Socializing Woes

Two summers ago, a few Aspie friends introduced me to a new game: Magic the Gathering. It is a trading card game which takes place in a world of goblins and faeries and giant monsters made of trees. I was skeptical; I’ve never been much into fantasy or sci-fi. But I decided to give the game a try.

A year and a half later, and two backpacks full of MTG cards rest under my bed, waiting for the next need to break them out. In addition, three decks sit in my school backpack, one for myself and two for whoever I can convince to “just try it- you’ll love it, I swear.”

Magic the Gathering is known to have a large Aspie following, and this makes sense given the nature of the game. It follows a very strict set of rules which never change and every activity must be done in a precise order.  There is no yelling or accusations of cheating in this game as all the rules are very explicitly laid out. Moreover, there is no need for small-talk while the game is occuring; the game requires such concentration that chatting would ruin the process.

A trip to my local trading card store will find you a dozen Aspies ranging in age from 11 to 30, as well as an NT or 2 who happened to get hooked. For many preteens, this is their first trip into a social atmosphere which is not structured and not connected to school. Because the owners of the shop are themselves Aspies, most parents feel comfortable leaving their kids at the store for an hour while they shop or engage in other activities Moms enjoy. After all, these employees know how to handle a meltdown, how to reduce the chance of sensory overload, and how to speak auspeak (the secret language of autistics that is impossible to define but simple to recognize).

If your son has basic math skills and literacy, and is looking for a new activity to explore, I could not reccommend MTG more highly. And at only $9 for a starter deck, it is a cheap hobby (at least for beginners), and an excellent foray into the social sphere.

Autism Comorbidities Week 2: A Personal Perspective on Migraine

Today is the second part of a multiple-part series on autism comorbidities. Today is a personal account of ASD and Migraine, by Cale I. (author of this blog). Next week we will be covering SPD, and the following week there will be a special guest post by Natalie @ Adopting the Spectrum about her toddler with SPD and Asperger’s. 

My Story

  March 5th, 2007. I’m sitting in my second period of Biology and my head begins to throb. It starts off gently and builds to a crescendo. The pain is so intense, I’m not sure I can keep breathing. Why is the teacher speaking so loudly, and when did these lights get so bright? Oh God, I think I’m gonna hurl.

I signal the teacher and make my way to the nurse’s office. She calls my mother and within the hour I’m at home, under a blanket, in a dark room with two tylenols in my system. But I feel no better. The pain is too intense to allow for sleep, so I wind up missing the next day as well. March passes by and every few days the severe pain comes back and lasts for hours, sometimes as long as two days. I lose weight from refusing to eat, I can’t sleep, and I fall behind on my schoolwork. My teachers can tell something is seriously wrong: the school valedictorian is failing simple review tests.

We make a doctor’s appointment, who directs us for testing and a neurologist visit, my first of many that are to follow. The neuro immediately sees that it’s Migraine Disease, and tries me on my first preventative, as she can’t give me an abortive drug until the number of migraines is reduced. After 90 days and terrible side-effects we give up and try another. Then another several months and some more side effects and we try a third. Finally we hit on a drug that works: the SSRI Zoloft, which I take to this day. I’m now down to only two Migraines a month, and I have abortives which can reduce the pain. I still miss classes (even once a Final as I was in the ER for a 72 hour Migraine), but I’m now able to recoup and catch up. Migraine is no longer running my life.

Migraine and ASD

Discerning that your typical child has Migraine Disease is complex; figuring out that your autistic child has it can be nearly impossible. How do you measure photophobia in a child whose eyes always hurt in the presence of flourescent lighting? What gets marked as phonophobia when a honking car can usually send your child into hysterics? If your child already has food sensitivities, how can you know when the nausea and vomitting has a different source? And noting pain severe enough to make talking impossible in a nonverbal child is not a talent many individuals have.

So what should you look for in your ASD child?

• An attempt to block out incandescent light or sunlight when his typical sensitivity is only to flourescents
• Covering his ears at the noise of speech or the television
• Refusing to engage in once enjoyable activities like watching TV or playing on the Computer (it may be because the lights and sound hurt his eyes and ears)
• Holding or rubbing his head, temples, or neck
• A reduction in pain expression when applying pressure to the top of his head
• Nausea and vomitting without a change in diet
• Attempts to spend the whole day tucked under a blanket in a dark room

Migraine Disease can be a crippling disorder. But if you’re able to find a neurologist who won’t give up, it doesn’t have to be. 98% of patients with Migraine Disease can find an abortive prescription that is effective for them, and 50% of those with Chronic Migraine (15 days or more a month) can find a preventative to bring them down to four a month.

If you have any questions about Migraine Disease, my experience with it, or how ASD can complicate a Migraine Disease diagnosis, please email me or leave them in the comment section.

And for additional info, be sure to visit this new page.

Cale Can’t Choose Colors

Due to paperwork issues, I’m still not back at work. So no “Autistic kids say the darndest things” yet…

When I was a child, there was one question I avoided like the plague. I always seemed to get it wrong, and people would often become frustrated by my answer. Like most social things, I felt as if there was a book of rules everyone had but me that gave insight into how this question ought to be answered, and until I learned the rule, I would always be wrong. The question? What is your favorite color?

Apparently, this question is to be answered with a one word response. Red, blue, mauve, violet, and fuschia are all acceptable answers. An answer that isn’t acceptable?:

“I like the color periwinkle because I like the way the word rolls off my tongue. But I wouldn’t actually want to own anything periwinkle because it’s a bland color. If I had a shirt, I would like it to be black, but that would look nasty on a house, which I would prefer in brick red. And if you’re asking so you can give me a piece of construction paper, this further confuses the issue. That is really a matter of which writing utensil we’re allowed to use. If I say black and we need to use pens or sharpies, it’s going to come out rather ugly. But if we’re unlimited in our options, and we can use chalk, black would be ideal and all the colors that would work with sharpies wouldn’t really work as well with chalk.”

I wasn’t trying to be a brat or toy with the question-asker. I simply could not honestly say that any one color was my favorite; it was all a matter of purpose. That’s why I couldn’t appreciate the answers of the other children; sure they may like orange, but would they want an orange house? And if they didn’t and wanted, say, a red house, shouldn’t that be listed as their favorite color for houses? But when pointing this out I was shushed, eyes were rolled, or I was handed whatever the next color of construction paper that happened to be out was.

And so I learned to answer the question the only way that would satisfy both me for its accuracy and the teacher/leader/aide for its compliance: “Oh, I don’t know. You can give me anything.”  Even though the more correct answer was, “Oh, you don’t really want to know. So you can give me anything.”

P.S.: My current favorite combination of colors for clothing and accessories is black, grey, and red. And though my mom was flustered trying to find things that matched this precise requirement, my 17th birthday brought a pair of black sneakers with red and grey stripes, and a black, grey, and red blanket which has never left my bed. Have I mentioned how much she rocks?

A Book to Remember

I’m actually going to post on topic this week. *Cue shock and astoundedness*

In the world of memoirs by parents of kids with ASDs, there are two basic classes:

• My kid was diagnosd and it ruined my life and I waved these magic wands and he was healed and now its wonderful
• My kid was diagnosed and it ruined my life but then I realized how wonderful he is and everything is perfect

And these books certainly have their place. But once you’ve read 5 or 6 (or *gulp* 13), the theme starts to get really really old.  I picked up The Only Boy in the World by Michael Blastland, expecting it to be rather similar. Three hours later, I took my first breath, logged onto BetterWorldBooks, and ordered all his references. He had me dying to know more.

Blastland’s book does talk a fair share about the struggles of raising an autistic son. It talks about closing the gap that seemed so wide at the beginning. It brings you through each tortuous social gaffe and embarassing moment. But it goes far, far beyond that, and that is where the magic is.

In each chapter, Blastland addresses a different philisophical question. Do people with autism have souls? What makes them different from robots? How does one come to terms with not being able to find a difference between your son and your computer? Once I stopped being offended, I was absolutely intrigued.

This was a man who had done his research. He knew Baron-Cohen inside and out. He was able to cite works that seemed to have little relevance to the topic and pull out just the right quote to make you see the connection.

But he never got dry and dull. At no point did I say to myself, “why won’t this book end?” I never flipped to the end of the chapter so see how many more pages I had to bear. I was totally immersed in this book.

The Only Boy in the World will not tell you how to stop your son from smearing feces on the wall. It won’t explain how he made Joe eat more than three foods. It will offer no magic potions, cures, or prayers that will whisk the autism away. But it will make you think. And that’s the best thing a book can do.

5 in 5 stars to Michael Blastland’s The Only Boy in the World. If you only read one book on autism this year, read this one.

Outrageously Offensive

This week I was very excited to receive a new book from the Interlibrary Loan system. The book was called ‘Aquamarine Blue 5″ and is edited by Dawn Prince-Hughes. It is a collection of short essays by college students with autism, and I thought I would love it. But instead I was terribly disappointed.

One issue of the book was that it was written for NTs. So many of the writers used lines like, “You probably wouldn’t understand but…”, which is terribly off-putting.

Another issue was the lack of practical tips. No one explained how they compensated for their sensory difficulties or overcame their social defiicits. As a result, there was no identifiable purpose for reading the book.  Having no information and no practicality, its only merit is that it supposedly displays the thoughts and ideas of autistics.

But it didn’t manage to do that very well either. Many of the writers were autistic-supremacists, who, while comprising a minority of autistics certainly do not represent autistics as a whole. Lines like “The theory of mind skills of most NTs are entirely dependent on the fact that they are so completely average and most of the people they will meet during their life will most probably also be completely average. There is no true merit in knowing what another person feels if the other person and yourself are entirely interchangeable.” are blatantly offensive. I wouldn’t want an NT, who knows little about autism (as this is the intended auidence of this work) reading this essay as it will entirely bias their opinions of people with autism. It supports the conclusion one of my classmates made the other day that “all Aspies, are by their very nature, assholes.” Of course I responded that anyone who would make a generalization like that really typified the term, but if writings like these were the only ones he had been exposed to, I could not blame him for such a statement.

On the whole, I’d recommend avoiding this book. I had wondered why it had to be ILL’d when our school had a large Aspie population, but now I’m glad this isn’t on our shelves. 0/5 stars.

(Oh, and this is book 2/26 on autism for this year)

Developmentally Deviant

I was talking to my mom recently about how she would describe my developmental path. I told her to not consider my feelings, and just be straight up truthful. A wondering public was curious. Here was her answer.

“You were a relatively normal baby, at least for the first 9 months. You had a reasonable sleep schedule, you were breast fed then eventually bottle fed, you had all your vaccines. Aside from your medical issues (respiratory difficulties later classified as asthma, and severe refleux) you seemed relatively average. Then around 9 months you started talking. Month 9 there were a few words, baba, mama, park, barney, etc. Month ten there were descripitive words : lellow, blue, geen, red, big, small, etc. By month 12 there were sentences, and by month 15 you were conversing at a 4 year old’s level. It was like someone set off a fuse and your language exploded. By 2, you really seemed to be a miniature adult. You talked in paragraphs. You could explain things. You loved talking to adults, but refused to talk to other children, except those around your brother’s age (5 years older). They simply didn’t have the language skills to keep up with you, and you didn’t have the patience to make the conversation practical. Around 7, you finally started to show some interest in kids your own age. The only problem was, they weren’t interested in you. You didn’t know how to play their games, how to banter and tease, how to enjoy a fart joke, or any of the other activities that typifies seven year olds.  By the time you understood their social interactions, they had moved on to more mature pursuits. And this pattern sort of lasted.When interacting with adults, you were a little adult. But when interacting with kids your age, you were stuck years behind in maturity.”

I think many parents of Aspies can relate to this description. Intellectually, their child was miles beyond their peers, but socially they could never make the cut. But this shouldn’t be a downer. There are other individuals who are equally as immature (at least at times), or can appreciate such immaturity (at least at times). There are those who will appreciate the intelligence of your child, and who will stimulate them to learn more. These are the individuals your child will come to call friend, and even though your child might never be in the “in clique,” he’ll find the support he needs to get him through the day.

And this week’s sunset:

And as a special treat, the sunrise:

Whoops! Wrong Wanderings

Were I ever given the chance to pick three new skills I don’t currently have, I have carefully considered the possiblities and picked my three. But I’ll only share one each week to buold the tension.

The first necessary skill would be the ability to determine which direction people are going to move in. For example, I’m walking down an aisle. Person B is walking down the same aisle in the opposite direction. I just about never correctly guess whether the person will dodge left or right to avoid me and constantly walk into people. I know that everyone walks into other people occassionally, but this happens to me several times daily. I guess it has something to do with not being able to read the nonverbal clues that should tell me what direction they’re going to move in next. Or maybe it’s just mindblindness .

Activities for Adolescents of all Abilities

One theme seems to repeat itself over and over in blogs of parents with special needs teens: I’d like my son to have friends, but I don’t know what they would do together because he’s immature/cognitively delayed/socially inadequate, etc. But one of the joys of teenage boys is that there is never a dirth of activities they might enjoy. So here’s a list of 25 activities you can make available to your son and his friends:

1. A movie (Disney-ish films are particularly good in that they are simple enough to be easily understood, but nuanced enough to be enjoyed by the more mature viewer)
2. Video Games
3. Board Games (Trouble, Sorry, and checkers are approproate for kids of all cognitive abilities)
4. Basketball (Horse, Around the world, etc.)
5. A walk to the park (the swings never seem to get old either)
6. A walk to the candy/ice cream shop (is it only in my hometown that they still have these?)
7. Baking cookies (Offer teenage boys sweets and there will immediately be fun)
8. Nerf gun fights (all the fun of shooting guns with none of the injuries)
9. Hose fights (when the weather’s a bit warmer)
10. Card Games (war is one of those games that will never get old)
11. A trading card game (Magic the Gathering is particularly popular among Aspies)
12. Ordering a Pizza and then walking to the shop to pick it up
13. A trip to the movies
14. Bowling (either at the bowling alley or with coke bottles and a soccer ball)
15. Snow ball fights (in cold weather)
16. A Puzzle (the wider the better so there’s no argument over who’s working on which part)
17. Rubik’s Cube competitions (if neither can solve it, just seeing who can make the most awesome pattern is a possibility)
18. Burping Contests (immature? maybe. A good way to elicit some laughs? definitely)
19. Videos of television enjoyed as a child (the wonders of reminiscing)
20. Exchanging cans for cash at the grocery store and using the proceeds to buy pop and candy bars
21. Laser Tag (cheap and harmless but a good way to run off excess energy)
22. Taking something electric apart (perhaps an old radio acquired from a thrift shop)
23. Putting something wooden together (a birdhouse, a cuckoo clock, etc.)
24. Magnetix (there’s something about magnets which make them simply irresistable at any age)
25. Watching You-tube videos (perhaps help your son find 10 cool ones before the friend comes over. Then an hour or more can be dedicated to the two showing off their favorite clips)

Now you’ll always have a response to “Mom, we’re bored!”

Autism Comorbidities Week One: Migraines

Today is Theory Thursday, and the first entry in a multiple part series on autism comorbidities. The first and third Thursday of each month will be an educational fact-based entry on one of several disorders which are comorbid with autism. The second and fourth Thursday will be a post from a parent of a child with, or an individual with, an ASD diagnosis and the comorbidity discussed the week before. For more information see Reader Request. The first comorbidity: Migraine Disorder.

Headaches can be divided into three main categories: Tension, Migraine, and Cluster. Generally, the least painful and easiest to treat is the Tension headache; for most individuals it can be cured with a Tylenol and a heating pad. The most excruciating is the Cluster headache, which is a series (or cluster) of ice-pick-like stabs directly behind the eye. These tend to occur for about a week, and then not appear again for months. Then there is the Migraine. Four things separate the Migraine from the Tension headache:

• more severe pain that doesn’t respond to OTC medication
• Sensitivity to lights (photophobia)
• Sensitivity to sound (phonophobia)
• Nausea/ Vomiting

For some individuals, a migraine is preceded by an aura, which may involve flashing or rotating colors, dots before the eyes, or intense smells or tastes which cannot be attributed to an item in the environment.

A migraine can last anywhere from 4 to 72 hours, with most lasting roughly 24. During this time it is often impossible for the individual to work, eat, speak, or perform their typical daily functions. The best place for an individual with a migraine? Lying down in a dark room with the lights off and the door closed, preferably one near a night-light lit bathroom.

The treatments for migraine are numerous and vary based upon the primary symptom of the Migraine. If the most debilitating aspect is the pain, often a triptan such as Relpax or Imitrex, now often taken with caffeine and naproxen to increase the effect is prescribed. If nausea and vomiting are the main issue, or prevent the ingestion of pain medication, Reglan and Thorazine are often used first. When there is a high frequency of migraine headaches (4 or more per month) a preventative is often prescribed. Some options include antiepileptics, particularly Topamax, and antidepressants, especially the tricyclics. For those with extreme cases, Demerol, Morphine, and Transcranial Magnetic Stimulation are also possible treatments.

The causes of migraines are even more numerous than the treatments. For an individual to have Migraine Disorder, they must have a genetic predisposition to migraines. Often Migraine sufferers can be found within two generations of a recently diagnosed patient. But environmental triggers also play an important role. A few of the most common are:

• Certain smells (such as cleaning products)
• Flourescent lighting
• Certain foods (particularly wine and cheese)
• Temperature changes
• Hormonal Changes (mostly for women)
• Abnormal Sleep Schedule

As a result, one of the most common steps post-diagnosis is to identify and attempt to eliminate potential triggers by replacing flourescent lighting with incandescent, and going on a restricted diet. If this is ineffective, a preventative is usually prescribed.

If your child is presenting with symptoms of migraine, the pediatrician will often recommend a trip to the neurologist (though most of you probably already have a family neurologist overseeing your autism care). The neuro will run a battery of tests including blood tests for hormone levels and food allergies, CT scans, EEGs, and MRIs to ensure that there is no other identifiable cause for the symptoms (such as a tumor, pseduotumor, or brain injury). Because there is no direct test for Migraine, it is a diagnosis made by the exclusion of other possibilities.

If your child is presenting with Migraine symptoms, it is important that you get help now. Medications have the highest efficacy rate when a person first starts presenting with the disorder, and the quality of life of the patient will improve dramatically after treatment. Additionally, there is increasing evidence that migraines may cause brain trauma in some prone individuals, making it key for you to seek help now.

Next week I’ll be discussing my personal experience with an ASD and Migraine diagnosis, so be sure to check back.

For more information on migraine, this blog, the blogroll at this site,  and this organization.