Rambling Writings

Take 1 dull history class and a creative piece due in half an hour. Mix with nothing but articles on autism for the past 3 weeks. Bake for 15 minutes. Release.

Autism.
It is who I am.
It is the way I speak, the way I think, the way I look at the world.
It is the way I relate to people, and the way that I relate to my senses.
Autism is what makes me me.

Autism.
It’s a different organization of the brain.
It’s how the same dots are connected, but form a new pattern.
It’s how the noises get too loud and the touches too sudden.
Autism is what makes my brain my own.

Autism.
It is a learning difference.
It is why I know all about X but nothing about the rest of the alphabet.
It is why I talk incessantly but cannot answer, “so what’s new?”
Autism is how I make sense of the world.

Autism.
It’s the way I move.
It is the reason I gently sway even when there is no music.
It is the reason my fingers never stop twisting even when the doctor insists I be still.
Autism is how I relate to my body.

Autism.
It is the way I communicate.
It is why I won’t meet your eyes even when you’re standing right in front of me.
It is why you can send me every signal imaginable and I still won’t have a clue what you’re saying.
Autism is how I know my place in the world.

Autism.
It’s not an epidemic.
It’s not a cancer or a blight or a sapping of the soul.
It’s a difference in thought, in speech, and in behavior.
Autism is just one way to be unique.

Pronoun Reversal in Autism

It’s Symptom Saturday again, where I’ll be explaining an aspie characteristic or “symptom” (As the DSM would call it) that often goes misunderstood by NT’s. Please note that I am not attempting to speak for all people with ASDs when I describe these behaviors, but merely my individual experience.

I have always had a “difficulty with pronouns.” Through 9th grade, a majority of my conversations would start with “Have you ever?” where my intent was to suggest that this was something I had experienced. I’d often complete the thought, and the conversational partner would respond “Don’t think so.” Then they’d pause and say, “Wait, have you?” the answer to which I thought was obvious. When discussing my thoughts on a topic, I would say “this makes you feel happy when you read it,” when I meant, “I’m made happy by reading this.”

It wasn’t because I didn’t understand that you and I were not the same person; I had theory of mind. It was simply how I understood social interaction worked. If I merely stated something that happened to me I couldn’t sustain a conversation. But if I attributed the thought or action to the person I was speaking with, they would then need to get involved and correct me, or ask more questions about exactly what I meant. It was the best way I knew to begin and sustain conversation.

People tended to find this behavior annoying however, and after being corrected so many times, I now use you and I in their conventional ways. But it really does make conversation seem more me-centric and less shared experience centered, and that seems to be unfortunate.

Distraction-free Desks

One of the great things about being in college is the infinite number of workspaces on campus. There are study rooms with large tables and internet ports. The bottom floor of the library is covered in bean bag chairs. There’s always the dormroom, equipped with bed and standard desk. None of these compare, however, to the carrels.

These desks have high walls in the front and on either side which protect you from potential distractions. They’re low to the ground meaning that any chair which you find most comfortable (I’ve always liked the enveloping feeling of a very squishy bean bag chair) can fit underneath and still allow you to see your workspace. They provide an upper shelf to hold books, supplies, and reinforcers (I like to place a small bag of chocolates on the shelf. Then every time I finish typing a page of a paper, I reward myself with a piece). The actual desk space is large enough to accomodate an open text book, a notebook, a laptop or computer, and a music device (tape deck, CD player, mp3 player, etc.)

Something about the carrel just makes me want to study. It is the only place I do homework, and I only do homework there, so homework and the carrel are firmly linked in my mind. When working there, I am more efficient, less distracted, and more committed than when working anywhere else.

If you don’t want to go out and purchase new furniture, the effect can be replicated by placing the desk facing the back of a closet or other small room, so that there is a protection from distraction on other sides. Throw a plank of wood 18 inches above the desk space, and you’re all set with an ideal study space.

Jerky Josh

For this week’s Media Monday, I  read Playing by the Rules: A Story About Autism written by Dena Luchsinger and available for preview here (no google preview available, so b& n it is).

This book was among the worst children’s books I have read and certainly the worst on autism.

The good:

The illustrations were fantastic. Kudos to Julie Olson.

The publisher has published several other books about autism, so they’re worth supporting.

The bad:

• If they didn’t specifically say “Josh has autism,” you would have no idea that this was the case. You probably would have thought Josh was a brat.
• The book does capture the angst of being the sibling of a special needs child, but never goes anywhere with it. It basically says that because Josh is autistic, it’s alright for the entire family to ignore his sister.
• There is no list of further information or resources in the back. So even if your interest was peaked by the story, you would have no idea where to go to find out more.
• The last page is terrible. Words randomly in all caps, 26 exclamation points (as many as 9 in a row), Strange sentence construction.

I thought perhaps there was something I was missing in the book, so I passed it around to a few friends (at 28 pages, it’s a quick read). The general consensus: What was up with the last page? and Are autistic kids really that bratty and terrible? To which the answer was an obvious no.

I’d give this book 1 star in 5, and that star goes only to the illustrator who did a fabulous job given the poor material she had to work with.

Reactions to Disclosing Asperger’s Diagnosis

So, it is wanton weekend, and I figured I’d write about what was on my mind this week: telling people I have Asperger’s.

When I tell people I have AS, they tend to react in one of four ways:

• Denial: But you can’t have autism, you (insert myth here). A few examples include: laugh, look at me, can have a conversation, don’t bang your head into walls, aren’t obsessed with trains, etc. When this happens, I tend to correct their statement, and if met with further denial, simply answer, “Why don’t you tell my neurologist he’s wrong then?”
• Wonder: So, can you (insert skill of savant here). Name all the prime numbers? Tell me the day of January 12th, 3015? Multiply 10,435 by 3,622 without a calculator? Learn any language in a week? Count like Rainman? Here the best response is “No, Can you?”
• Misunderstanding: Here the speaker speaks slower, using simpler words. If they’re being condescending, I usually say “I’m not stupid; I’m autistic” in a manner that mimmicks the one they’re using with me. If they seem to actually be confused, I give them a brief lesson on the difference between autism and developmental delay.
• Agreement: Oh yeah, I knew all along. I can see my nephew/uncle/brother/twin in you. I’m impressed with the way you’re handling yourself.    This is the rarest of responses, and a simple “thank you” usually suffices.

I’ve found that any time I plan to make a disclosure, having a list of resources available is useful. Simply saying, “you can look it up on the internet” typically results in their becoming seriously misinformed. Being able to say ‘You could visit Oasis if you want to know more” is far more useful. Of course, offering to answer any questions they might have or direct them to further sources is always a plus.

Managing Meltdowns

Today is Symptom Saturday and  I’d like to bring up one of the questions that get raised when you have an Aspie-NT friendship: When should you talk about meltdowns, and what is appropriate to say about them? This is not a question I have a solution for, rather it’s one I’m still looking for an answer to.

Once in a blue moon, I have a full-blown meltdown. I kick walls and slam doors. I bang my fists against my head, and crash my head into the nearest object. I dig my nails into my skin until I draw blood. I can’t form a coherent thought, much less respond to things going on around me.

This behavior looks violent, and dangerous, and worrisome. People around me who’ve never seen me meltdown fear they might get hurt. They fail to realize the attack is entirely self-inflicted and there is no threat to them, and I can’t form the words to get this thought out. Friends often try and say things like, “Calm down” and “It’ll be alright”, not realizing that this is even more frustrating and just makes things worse.  Whenever possible, I try to escape to a private location to meltdown, so that no one is wigged out, but I usually emerge with “war wounds.”

I cannot discern when it would be appropriate to tell a friend about these meltdowns. Because they happen so infrequently (once every six months or so), they’re not something I think I have to disclose to all friends, and not something I want my friends to worry about. Constantly thinking, “Is he going to have a meltdown?” will help no one. On the flip side, not telling them until afterward can make the experience of watching a meltdown very frightening. They’re not sure if I’m going to lash out, and they have no idea how to respond. A serious meltdown could frighten them enough to avoid possible future encounters with me, and I don’t want to ruin any friendships.

Any suggestions on this point would be greatly appreciated.

Justin and the Juggernaut

It’s friendship friday again.

If Steve was the stereotypical picture of autism, Justin is exactly the opposite, what we call “a stealth aspie”. Meeting him, you’d have no idea he was anything but NT. He doesn’t flap or stim or rock (in fact he often places his hands on my shoulders to stop me from rocking). He wears dark shades so you can’t tell he’s not making eye contact, and he can manage conventional social pleasantries with ease.

But then you begin to talk to him and the layers peel off. He has a pervasive interest in literature; I cannot name a classic he has not read at least twice.  Or a fantasy novel for that matter. He also loves languages; at this moment he speaks 6 fluently, and is working on 3 more, arabic being his favorite. He doesn’t enjoy interacting with people; if his parents would let him, he would spend every day in his room with his computer and a book. Fortunately, thanks to the existence of trading card games (pokemon as children, magic the gathering now), we are able to find games that allow us to be both in our own private worlds and interacting at the same time. The nature of the game prevents the need for pointless chatter to fill the time, and as a result we are able to punctuate the silence with meaningful conversation and then return to our respective worlds. 8 or 9 hours pass in this manner every weekend.

He has no interest in autism advocacy. He works to blend in as much as possible, and waits for the “cure” that will make him suddenly able to understand gestures, facial expressions, and idioms.

Asking around for nonbiased input, I recieved some interesting perspectives on him. Some described him as “hard to get to know”, others as “visibly uncomfortable and awkward” and a few just laughed and asked “why would anyone want to know about Justin?”

I’ve known him since we met over crazy bones in third grade, and he matches both the desciptions given above. But he runs much deeper than other people can see, and that’s where the tragedy sets in. If people could get past the awkward cover, they’d see him for who he is: An intelligent deep thinker held hostage by the notion that because he cannot interact in the same manner NT’s do, he ought not interact at all. It is not his autism that is holding him back, as he claims, but rather his perception of autistic people in an NT world, and the prejudice and condemnation that he has experienced as an Aspie just trying to fit in.

He could benefit from the introduction to Aspie role models that manage to be both accepting of their autism and engaged in the world around them. He has so much to share with the world, but he needs to learn that the world wants to hear his voice, even if it doesn’t sound like all the others.

*the title comes from the 6th grade spelling bee, which he qualified for in fourth grade. He came in second place, missing 1st because of the word Juggernaut. He has never forgiven himself for this.

ABA: A Brilliant or Bogus Approach?

Today is Theory Thursday, and the third week of a series on Neurodiversity. First I introduced the concept of neurodiversity, then I debunked Neurodiversity myths (and had quite a discussion in the comments section), and today I’ll be discussing ABA, one of the most common, but also misunderstood therapies for individuals with Autism.

• What is ABA?

ABA stands for Applied Behavior Analysis. It was invented by Donald Baer, Montrose Wolf, and Todd Risley (article here) , and based on the principles laid out in B.F. Skinner’s About Behaviorism.

• What is the theory behind ABA?

Applied Behavior Analysis is based in the notion that all behaviors are learned, and can also be unlearned. Behaviors are learned when reinforced, and unlearned when punished or extinguished.

• How is this put into practice?

The first step is to identify the problematic behavior. Let’s say headbanging is the behavior seen in your child. An analyst might study your child in a controlled  setting, and count the number of times he bangs his head in a given period of time. Then a therapist will begin to work with your child. Every time he bangs his head, the behavior will be punished, most often by the child’s removal from the room. Every time his frustration is expressed in a more positive manner (for example by saying “No”), this behavior will be reinforced, possibly by a piece of candy or the ability to play with a favorite toy. A token economy may be put into practice, where the child will earn a token for every time the positive behavior is exhibited, and lose a token every time a negative behavior is exhibited. The tokens can then be exchanged for a toy, sweet, or other positive item or activity. This is more useful in older children who can understand the premise of trading in tokens for toys.

• What sort of behaviors can be learned using ABA?

Any behavior from speaking, to asking questions, to pointing to items, to holding a spoon, to identifying relatives from pictures can be reinforced. The process is limited only by you and your analysts’ imagination.

• What does punishment mean? Are they going to hit my kid?

Conventional ABA therapy does not condone the use of corporal punishment against children. Always check with your therapist prior to signing up to ensure that they are not planning on using physical punishments against your child.

• What does it take to be qualified to practice?

A senior applied Behavior Analyst has a Doctorate in Behavioral psychology and a Board Certified behavior Analyst certification. Make sure that the person in charge of your child’s case has this certification to ensure that you are getting the best care. The actual one-to-one therapists have Board Certified Assistant Behavior Analyst certification, requiring a Bachelor’s degree and at least six months of supervised experience.

• But don’t they offer classes and seminars in Applied Behavior Analysis?

Workshops are available for parents and other individuals learning how to put ABA into practice. However, if a person is to be considered an ABA professional, they need to be board certified.

• How often must this therapy be used in order to be successful?

Researchers are still working to determine how much therapy is needed to have some benefit for a child. Many say that 40 hrs per week is optimal, but there is evidence that even 10 hours a week (2hrs/ day), can lead to visible improvement. How much your child receives could be based on cost, behavioral goals, your ability as the parent to serve as an assistant therapist (implementing learned procedures at home), and your child’s attention span.

• Who can benefit from ABA?

Nearly all children can benefit from ABA therapy. From the simplest behaviors such as holding a spoon, to the far more complex behaviors of having a telephone conversation, ABA can help your child master the skills he needs. Of course, it will not be the ideal solution for every child. I will be discussing Floortime/DIR in two weeks, and TEACHH next month as the final therapy covered in this series.

• Is this therapy neurodiversity friendly?

It certainly can be. Tune in next week to see how traditional ABA therapy can be made neurodiversity friendly.

Additional information can be found on this blog, on this video, or from this organization.

Aspie Academics

Around the blogosphere, I’ve heard a whole collection of different perspectives on the best environment for educating a child with Asperger’s. Some maintain that homeschooling is the only way to go. Others argue for special ed. classrooms, and still others insist on mainstreaming, either with or without an aide.

I was fortunate in that I was able to experience all three in my elementary school days. I was always in a mainstreamed classroom, but beginning in kindergarten on up through 6th grade, the goal of the classroom was really the socializing. Since I was reading and doing arithmetic by 4 and writing paragraphs and doing pre-algebra by 6, I was always given separate classwork, some to be completed in the classroom and the rest to be done at home.

From third through sixth grade, I was sent to the “Gifted Class” once a week. This was held at the central elementary school of my town (our town had 7 elementary schools with 125 students per grade in each one) and was designed for kids with high IQ’s but special needs (ASD, ADHD, SPD, LD etc.) (of course, we had no idea this was a special ed. class at the time; we couldn’t really tell what the unifying factor for all of us was). This class really was an ideal fit for us. We’d spend the mornings working on a year-long project based on a special interest, and the afternoons doing group work, logic puzzles, brain teasers, etc. Some of the topics we covered in the group work sessions were: neuroscience, computer programming, oceanography, epidemiology, immigration policy, and others. The special interest projects were all presented at the end of the year on “Expert Night” when parents would sign up to attend mini-lectures on our interests. There were 12 or so kids in each class (they conducted 10 a week), and the room was equipped with chairs of all types (beanbag, rockers, ergonomic, etc.), and no student was ever denied a fidget.

The reason this multi-level system worked so well was that I (and the other students in the class), were able to spend four days a week interacting with other students in our age group, and one day a week in a class that actually interested us and catered to our needs. It was this class that made the rest of the week bearable.

If your school is looking for a way to better accommodate your child’s needs, suggesting a class like this might be useful. It is probably most likely to be instituted in a large school district which would have many kids that qualified, but there might be ways to integrate some of the ideas from the program into a mainstreamed class (for example the range of chairs or the independent long term project).

Optimizing with Ovaltine

Since leaving for college, remembering to eat on a regular basis has been a major issue for me. Without a set schedule of meal times or any present food rituals (like a family dinner), I usually have to begin to get dizzy and lightheaded before I realize I haven’t eaten in 36 or 48 hours or however long it may have been. While most students gain 15 pounds their freshman year, I lost 10, and this semster (as life speeds up and classes are conducted during typical meal times), I’ve lost 30.

Schedules, reminder, and other such plans all have not been effective in getting me to eat on an organized basis. As a result, the most logical option is to optimize the food I am ingesting to ensure that I don’t become malnourished as a result of infrequent feedings. For this reason, I have several cannisters of Ovaltine sitting atop my desk.

Ovaltine is a terribly useful product. I grab a thermos of milk in the morning and throw in a few tablespoons. When eating cereal, I sprinkle some ovaltine on top. When cooking deserts for a meeting, I add some into the batter. Because it tastes like chocolate it can be substituted or added any time chocolate is called for in a recipe. Ovaltine chocolate chip cookies, Ovaltine Brownies, Ovaltine cake have all graced my table this semester. Combined with milk, five servings of Ovaltine daily will cover nearly every vitamin. Additionally, a serving can be thrown into a piece of tupperware and brought to the dining hall and added inconspicuously to ice cream or milk without anyone knowing that it isn’t simple chocolate. I always try to keep some on me for those days when I remember to hit the dining hall and can put this suggestion to good use.