Night Owl

It's midnight and I should be in bed.  I have class tomorrow at 9:40am and know that I'm going to suffer if I don't get sleep soon.  However, I'm heavily engrossed in cleaning the bathroom - wiping down the sink, cleaning the toilet, spraying the shower, all those kinds of things.

I always remember to stop what I'm doing at a good time and go get ready for bed.  I'll get off of the computer at 11 and go put my pajamas on, brush my teeth, comb my hair, but then something will catch my interest, like folding clothing or, as with tonight, cleaning the bathroom.  All the little tasks I forget or neglect during the day seem totally doable, one last thing before I go to bed.  A minute chore suddenly has turned into an hour and I'm cursing myself out for it because I know I won't get enough sleep now.

Most Aspies I've spoken to admit to innsomnia and other sleeping issues.  Once I'm in bed, I'll sleep, but until I actually lay down and roll over, my mind is constantly searching for some little thing I didn't do yet, something to clean or organize.

Does anyone else have this issue?  How have you dealt with it, what kinds of methods keep you from staying up all night cleaning?

Pills

Every night, I take pills.  Some nights as few as two, others as many as six.  All are legal and most of the pills have been added as I've gotten older, and many have been taken away.

I've been on psychiatric medication since around 2002.  It started before I was even diagnosed with AS, when I was dealing with serious depression and ADD.  I began to see a psychologist in sixth grade, who quickly referred me to a psychiatrist in the same practice and started me on medication.  I remember going through all different pills at first while finding one which worked correctly without too many side effects.  One treated the problem but caused me to become extremely hungry.  Another just made things worse.  Finally we settled on a combination that seemed to work.

It can be so amazing to consider the effect a tiny pill can have on me.  I take 25mg of Serequel for anxiety and over the summer my doctor decided to take me off of it.  At first, everything was fine, and then boom, the world exploded.  Panic attacks, the feeling of being followed, irrational fear, mood swings, being on edge and upset when there's nothing to be upset about, it was as if my entire life had been flipped on head.  After a particularly severe attack I knew it was time to get back on the medicine.  I now look at this pill with awe when I take it - that tiny little dose protects me from so much.

Learning to manage my medicine was an important step in growing up.  When I graduated high school, my mom gave me my pill bottle and told me it was my job to remember to take it now.  Getting a phone with an alarm set for the same time every day has made this task easier.  I'm now entirely responsible for taking my pills on time and correctly.  It actually makes me feel safer knowing that I'm in control of my doses and that I have only myself to blame if I don't get them.  When I go out for the night and there's a chance I won't be back by the time I need to take my pills, I put everything into a pill container and throw it in my bag.

When did you or your child start to manage their own medicine?  What has your experience with medication been like?

Happy Thanksgiving

This comes a day late, but Happy Thanksgiving to everyone.  I celebrated in the real world with my family yesterday and in the virtual world with my friends today.

Thank you to all of my wonderful readers for taking the time to read and comment on my posts.  I wish every one of you a happy and healthy holiday season.

I am thankful for my past, for making me who I am.
I am thankful for my future, which is brighter than I can know.

Thanksgiving dinner at the Little Wonders Community Church.  I'm on the very very far right end.

Holiday Gathering Survival: Tips for the person with AS

I've never particularly enjoyed family gatherings over the holidays.  They're okay, but the majority of my extended family is middle aged and rather boring to be around.  I have two cousins close to my age (both of whom I get along with) and I won't be seeing them this year.  Instead, I'll be answering the same questions over and over and over again: How's college, how are your grades, do you like your classes, do you have a boyfriend yet?


I've created some tips that have helped me get through the holidays and hope that they help other people with Aspergers.

• Bring something to do.  A book, laptop, music, a game, anything you can play by yourself.  This is helpful when in a situation which could be overwhelming and allows you to retreat and just ignore the world.
• Volunteer to help.  People appreciate when you offer to set the table, clean up dishes, bring something special or help them in general.  Unless you know they really hate help and see it as an intrusion, be on the look out for opportunities to assist.
• Keep aware of hints.  NTs can be irritating because they drop lots of hints but never say something directly.  If someone keeps mentioning that you make a great bread pudding (or any other food or craft item), ask them if they'd like you to bring it if it's possible for you to do so.  If you can't but they seem to want it, tell them, "Oh, I'd love to bring my bread pudding, but my oven isn't working (or any other reason you might have)".
• Be up front about being overwhelmed.  If someone is bugging you, tell them politely but firmly, "I'd like a little space right now please."
• Prepare answers to the questions you know you're going to get, such as major life changes or general status.  Rehearse what you'll say about your job, school, significant other, children or hobbies.
• Make sure everyone is aware of any food sensitivities you have in advance.  If you recently became a vegetarian/vegan, discovered a new food allergy, converted to a religion with special food requirements or switched to a special diet, tell everyone at least a month ahead of time and keep reminding them.
• When engaged in conversation, try to not get drawn into family drama.  If Aunt Marge and Uncle Wendell are going through a rough spot in their marriage, avoid gossiping about it or any other family issues.  Same goes for the big two bad conversation topics: religion and politics.  An exception is expressing sadness that someone couldn't make it due to illness or finances.
• Ask the host before you invite another person who wasn't invited by them to come with you.
• Watch for cues.  Don't start eating until someone either says to eat or a majority of the others start to eat.  If everyone else bows their heads to say grace and you're not comfortable with it, put your head down and act the part - you don't have to actually do it, but be polite and don't create a scene.

Link Day: A Taboo AS Subject

Sex is something that specialists in Autistic Spectrum Disorders never talk about.  It's like people with ASDs are never supposed to have sexual relations, which is totally wrong.  I've seen one book written about sexuality and Asperger's and not much else.  That's why I was thrilled to see that Brazen Careerist's Penelope Trunk has written an article about what it's like to have sex with someone with Aspergers.

The book on Asperger's and sexuality is written by AS expert Tony Attwood and can be found in part on Google Books.  If you can get a copy of this, it's quite informative.

On the outer reaches of AS-related sexuality is this article about Aspergers and BDSM (Bondage and Discipline/Dominance and Submission/Sadism and Masochism) and fetish sexuality.  It provides an interesting view, especially since fetish sexuality involves so much sensory input.  As one person puts it in the opening of the article:

The nerves on my back are so overstimulated from just wearing a T-shirt that a flogging feels like a soft warm summer rain... or what I imagine a soft warm summer rain should feel like, since a soft warm summer rain actually feels like acid drops on my skin.

Perhaps this is a topic which needs more exploration as children diagnosed with AS and autism are aging into teenhood.

Confused Senses

Sensory Processing Disorder (SPD) is one of the most commonly diagnosed commorbid conditions with ASDs.  It muddles up the sense of the person, making them uneven with what is typical for humans.  They can be turned up too high (hypersensitivity) or down too low (hyposensitivity) and some senses can be too high while others are too low in a person.

People with AS already notice little things more than the average person - a vent or someone tapping a pencil in class can be more distracting than if a full parade marched through the room!  Having your senses muddled up just makes the problem worse since the brain can't properly interpret input.

The part which confuses me about all of this is how senses can simultaneously be too high and too low.  My sense of touch seems that way sometimes.  Light touches drive me nuts - someone bumping slightly against me or a hand brushing across my back will drive me up a wall.  In the same breath, heavy pressure from blankets or hugs relaxes me and creates a feeling of safety.  However, this is a hugely common problem in autism.

When I was in a classroom for kids with Asperger's Syndrome, it was a mess with all the sensory differences.  One kid would be blasting music in their headphones which would cause another to become upset since they could hear the tiny bit of music and it ruined their concentration.  One would do nothing but play with Lego blocks while another couldn't stand the feel of the bumps on them.

Because of all the sensory issues people with AS tend to have, stimming is important.  It regulates the senses, allowing an individual to change the input and process it better.  It also provides relief from emotional stress.  I know that when I get upset over something I seek stimuli like crazy, tapping, bouncing, humming or tensing muscle groups.  There's probably some neurology behind this that I'm not aware of, but for one reason or another, it helps.

While stimming is important, it can be hard to explain as you get older.  I've learned to confine my stimming more in college.  A simple thing like wiggling a finger in a button hole on my jacket or tapping my toes can pass properly and isn't as offputting to others as full body bouncing or swaying.

Patience and pushing myself bit by bit has been amazingly successful in overcoming most of my sensory issues.  When I feel myself starting to cringe because of a texture, I'll force myself to touch it just to realize that it isn't that bad.  High-pitched sounds can drive me up a wall, so I remember to take a deep breath and figure out how to either remove myself from the area or stop the sound.

The more self-aware you are, the better you can overcome the sensory issues.  It's important to not only learn to stand them but to work every day on improving your reaction to them through little things like touching something you dislike or tasting a food that is a bit unpleasant.

How have you learned to control your or your child's need to stim on things?  What kinds of toys or methods have worked?

Religion and Asperger's Syndrome

 I grew up in an averagely religious household, one which would usually attend church but didn't have a problem with skipping a service if something came up.  My parents seem to consider themselves liberal evangelicals, with my mother being a bit more religious than my father.  They began to attend a local church shortly after I turned five and a portion of my childhood memories are dominated by uncomfortable buckled shoes, Pioneer Girls (their version of Girl Scouts) and church camps.

With my parent's views on personal choice, I was given the option to stop attending church when I turned 13, which I did.  I never liked or understood going to church.  To me, it was school on the weekend - I was just as ostracized by the kids there as I was at school and the book was boring and never updated.  Instead of just drifting from religion altogether, I began to learn about religion at the library and became fascinated by the ideas of Buddhism and Unitarian Universalism.

However, the more I studied religion the more I realized it wasn't for me and I began to question the very existence of a higher power.  This led into an existential crisis at 15 when I began to believe that the world didn't exist and engaged in heavy solipsistic thought.  I went through a period of agnosticism before making the decision that I am an atheist at 16.

A forum post on Wrong Planet indicates that I'm not alone as a non-religious Aspie - the overwhelming majority of the over 150 respondents to the poll indicated that they were atheist or agnostic.  Interestingly, even the theists responding to the discussion indicated that they arrived at a conclusion in their religion based on logic and reasoning.

There are many possible reasons as to why people with Asperger's Syndrome tend to be without religious beliefs and many for why they would be.  The argument for religious beliefs is fairly straight forward - it presents a set of rules to live by, a code of conduct which covers just about every possible life scenario and a structure which can be taken into any situation.

The argument for not having religion can be just as straight forward - it isn't logical to follow something that can't be proven with the scientific method, especially a bronze age based code of conduct which needs heavy interpretation to make sense and can be changed by whomever is reading it.

Here is my question to you, the reader: Are you or your Aspie religious and why?  How did you come to your decision on how to view life?

Food for thought on free speech

One topic has been all over Twitter and Facebook since yesterday: Online retailer Amazon.com is under fire and threat of boycott by many parents and child safety advocates because they have allowed a book called "The Pedophile's Guide to Love and Pleasure" to be put up for sale in their e-book section.  Recent reports have said that the book has been taken down, but the sudden backlash was huge.
The Stir put up a wonderfully thoughtful article about the reaction to the book and free speech, one which I'm really glad was put out.  As soon as I saw the news covering my Twitter feed I groaned and thought exactly what this article so eloquently says: calling for Amazon to remove the book because the public disagreed with the subject matter amounted to the promotion of censorship.

My own opinions about pedophiles vary and were mostly influenced by this fabulous letter and response from Seattle's favorite love and sex columnist, Dan Savage.  Anyone who touches a child with the intent to harm them should be punished swiftly and justly.  However, the urges in the mind of a non-offender should be treated because the person is suffering from them.

These people don't choose to have the attraction to children and there should be more sympathy for the plight of those who suffer because they can't have a normal and healthy sex life because of a distracting and inappropriate fetish.  If they loose control and harm a child, they should be punished, but if they actively work to avoid situations which would cause them to do so, they should be given proper treatment and therapy and helped to form normal and healthy adult relationships.

While the subject matter contained in the book in question is morally wrong and there is no excuse for sexualizing or harming children, careful consideration needs to be paid to the fundamental rights which the United States was built upon, namely that of free speech.  As long as no child is or was harmed, there is no crime in writing and publishing this book.  There is only a crime if someone follows what is said in it and does turn to hurting a child.  If they do, they need to be prosecuted to the fullest extent of the law and given serious psychological help.

My belief is that while I might not agree with what someone says, I will fight for their right to be able to say it.  After all, that's a foundational principle of America and what we all should be working toward.  Censorship leads to totalitarian dictatorships such as Iran and is a slippery slope to the violation of human rights.

You have the right to boycott what you wish for whatever reason you wish, but consider the impact of what you're really saying before you do so.

Aspie Pride

It was hard to have pride in being an Aspie when I was in high school.  I was teased a lot for being odd and just wanted to isolate myself and not deal with the rest of the world as much as possible, to appear at least somewhat normal so that I could get out of the special ed classes.  Of course, it's hard for anyone to really be themselves in high school.  Those are rough years where everyone mocks others so they aren't laughed at themselves.

Now that I'm out of that, I'm seeing my AS as more of an asset, something which is part of me and gives me an interesting view that most people can never experience.  I've gone from being embarrassed about my AS to being fine with saying I have it if it comes up in conversation.  I wouldn't be able to write this blog if I wasn't open about it - we had to pitch our blog ideas to the entire class and open them to critique.

Having pride in not just AS but the other conditions involved can be positive as well.  I'm very open about my prosopagnosia because I have to be to function well.  I will usually tell people I've met and know I'm likely to meet again that I have a condition that keeps me from seeing faces properly and apologize in advance if I don't know who they are next time we meet.  I've never had a single negative reaction to this - everyone I've told has been very interested by it and want to know more about how it works.  Another gentleman I know had a brain injury and can't remember names and told me that as soon as we met.  He was very open about it and I was impressed.

I don't think having AS makes me better than an NT.  There are some areas where I'm probably better off and some where I'm a lot worse off - everyone has strengths and weaknesses.  I do have my moments of wishing others were Aspies so they could understand what's going on in my head, which is usually incredibly hard for an NT to do, and I have my moments of being really glad that I'm the only Aspie around because it gives me some advantages in that situation.

I hope that parents with high-functioning autistic or AS kids will teach them to have pride in who and what they are, to not be ashamed of their condition and hide it.  It's so much easier for others to hurt you when you have a big secret.  When you're out, loud and proud, they can't exactly hurt you because you're entirely comfortable about it.  This is why it's so easy to gay bash someone who is seriously closeted and near impossible to use gayness against a very loud, out advocate.

Be happy and comfortable with who you are - have pride in being an Aspie!

For more information on Aspergers pride, please click here.

Link Day: Identifying Facial Expressions

The last few years have been really important, exciting times for autism research.  It seems like we're learning something new about the brain and how it works every day.  One of the most interesting bits of research I've run across is this piece by the Pittsburgh Post Gazette on how people with autism identify faces and facial expressions.

Of the 10 youths with autism who were tested, only three had activity in a typical face-processing location known as the fusiform face area. The others tended to analyze faces in a part of the brain normally used for objects, she said.

Another bit of research which came out recently said that those with autism and a risk of autism have a large amount of connections in the front part of their brains, an overabundance of connections, and few which go to any other part of the brain.

 Autism isn't just acting differently, it's how people process things.

A message for parents

Autism is not a fatal diagnosis.

I know a lot of parents are scared to death that their child, born or unborn, might be autistic.  They're frightened their only son will be stuck in a mental institution for the rest of his life, that they'll never see their daughter's wedding day, that their family will be turned upside down or marriage destroyed by having a child who requires so much time, effort and money to be helped along with a developmental condition which can never be cured.

A person with autism can still be happy.  It doesn't mean they'll never go to college, never hold a job, never have a relationship, never be a productive member of society.  Perhaps in the past those were things told to parents of children with ASDs and some doctors today might still say it, but today it isn't necessarily true.

Your child might not be the next Temple Grandin or Luke Jackson, but a neurotypical child might not be the next Brad Pitt or Hannah Montana.  Too often our society tells us kids have to become celebrities, that fame is the greatest goal.  I think that a better goal is becoming a good person and that it's also a more reachable goal, no matter what problems are thrown in the path.

My advice is this: Be there for your child.  Be their best friend, their confidant, their teacher, their shining star.  Celebrate the goals you reach, no matter how minor.  Every step forward, no matter how small, is still progress.  Resist the urge to compare and be competitive and instead focus on the childs' strengths on their own.  Be patient, be loving, be kind.

You are your childs' best advocate, especially if they can't speak for themselves.  You know them, know their needs, and need to push so they get the best treatment possible, the best support and care.

Your child might not be "normal", might never lead the life that is "typical", but they can be happy.  They can love and be loved, and that is the greatest thing in the world.

Audio Book Review: Freaks, Geeks and Asperger's Syndrome