What really happens when the blind lead the blind?

Think back for a moment and consider if you’ve heard either of these phrases for a moment:

“When the Blind lead the Blind, both fall into a ditch.”

“In the land of the Blind, the one-eyed man is king”.

Likely that exercise wasn’t too difficult, if you’re anything like me, you’ve heard these phrases an innumerbale number of times in your life. And because you’ve heard them so many times, you’ve come to accept them as fact, likely without ever really considering the situations they describe.

Think for a moment about “the blind leading the blind.” The chance of two blind people actually falling into a ditch while walking together is very slim. The sight of the ditch is not the only cue of its location, and if these individuals have grown up blind, they likely have a variety of other compensatory mechanisms which would allow them to locate the ditch and not fall into it.

Now imagine a sighted person leading a blind indivdual around a ditch. Now the chance of the blind person falling in is actually significantly raised. While the two blind individuals were able to offer meaningful cues to each other to avoid the ditch, the sighted person is less aware of the exact needs of the blind individual, and would not be as effectively capable at guiding them away from the ditch.

Think now about “The Land of the Blind”. Would a one-eyed man really be king there? Almost definitely not, and for several reasons. For one, the “Land of the Blind” is likely suited to be used by blind individuals. It is not as if there are signs that only the one-eyed man will be able to read, because if everyone in this land was always blind, no one would have created the sign. Additionally, if this was the first sighted person born in a land of blind people, the sight would likely offer no assistance, because he would not be taught to make use of the skill. If no one else could ever see before, how could he naturally be able to use his sight to his advantage? He’ll also be far easier to distract; while his classmates can focus on their lessons, his eyes will be darting around watching birds fly by the window and the sun play tricks on the ground, all distractions his classmates are not privy to. He’ll likely be an underperformer, rather than a powerful king.

The explanation is that both are metaphors, and can’t be examined literally. But what is the metaphor suggesting? It is putting forth the notion that in all situations, it is better to have someone who is non-disabled or less-disabled in charge, as they will naturally be more capable of handling the situation than those with the disability. It refutes the notion that there are times when a disability could ever be an advantage, and teaches us, from a young age, to reject the disabled and find attempts to make them more like the non-disabled, which will in-turn empower and strengthen them. And that is a dangerous road to travel down, particularly when the evidence points away from it.

Rough Week comes to Promising Conclusion

This week with the boys started out very rough. It was a full moon, the weather was changing, and day lights savings was coming into play. To add onto this both boys are having their medication dosages changed. I was crushed by last Sunday’s experience, when Lawrence recoiled from my touch and hid from my presence, not producing a word the entire six hours I was there.

      But I went back this weekend and things had significantly changed. Lawrence managed a “Hi, Cale” when prompted, and used his new words throughout the afternoon to express wants. He smiled and offered kisses and hugs, collapsing in delight when I followed him around the house or mirrored him in a dance. I said to his mother at one point, “It is as if he remembered that he and I were friends”. It was so nice to have the old Lawrence back, one who hadn’t been fully there since his hospital stay in August.

But that wasn’t the high point of the afternoon. That came when Aaron’s friends, the family’s neighbors, were jumping on the trampoline, all six playing a complicated game with a dance. And Josh and Lawrence, of their own accord, climbed into the trampoline to join. The kids in the trampoline switched away from their complicated sequence to make a game everyone could enjoy like jump in a circle or see who can jump highest. Sometimes the insight/understanding held by the neighbor kids who have grown up with these guys is astounding. I hope there comes to be a point when all kids act that way towards others with disabilities.

Asperger’s and College Parties

After staying at a house notorious for its parties this summer and becoming good friends with the people who live there, I have begun to attend parties this semester, an activity I had never done before.

There were many reasons I didn’t attend my first two years:

• too many strangers
• very loud and unexpected noises
• close space with a ton of jostling

all of which can be very irritating to the Aspie. My first plan for this semester was to arrive two hours before the party (note that the holders were good friends of mine), and then leave after a half-hour of partying because the environment was too intense. That way I got to enoy the festivities but avoid the overload.

When my friend voiced her concerns to me that I wasn’t enjoying the parties, I explained to her how the above reasons make me uncomfortable. She nodded, considered for a moment, and came up with a plan. “How about,” she said, “we develop a break room. My room is in the back of the house away from the noise and strangers. And whenever you’re feeling overloaded or stressed, you can chill in the break room.”

I was struck by the idea; it was an ideal solution, one which most parents of autistics are already well aware of as they implement it at birthday parties, holidays, and other social gatherings.

So last night I attended my first full party (2.5 hours). I mingled and socialized in the large group for some time, but I also enjoyed the break room a great deal. Other friends passed in and out of the break room as we created a party within the party, a place for friends of the house’s owner to chill away from the strangers and their annoying habits.

And you know what? I had a blast. I got to hang out with friends I hadn’t seen in awhile, watch several games of beer pong, enjoy some good music, and overall enjoy a stress-free, relaxing evening. Most importantly, I established that social parties are  not an impossibility for me. With a simple accomodation we turned a dreaded event into great fun for all.

Ask an Aspie: Autistic Adolescents at College

This question was recently asked in Ask an Aspie, and it’s a topic I wanted to talk about anyway, so here goes:

My 18 year old aspie son left for college in August and has not initiated any sort of communication with any of his friends or family. Is this a usual aspie response to a new situation and should I be frequently checking up with him. I almost have to say I will show on his doorstop to get a response and then it is extremely limited.

First, I’d like to tell the reader that she’s not alone. Almost all of my friends have had arguments with their parents about how often and how they should “check-in”. My mom and I have discussed this many times.

There are many reasons I wasn’t calling home as often as she would have liked when I reached campus. First, I hate phone conversations. It is so much harder to determine when to talk and to have no lip-reading ability to fall back on. Second, I didn’t have time. With all the social activity, academic requirements, and neccessary zone time, I didn’t think I could fit in frequent calls home. Third, I simply wasn’t interested in what my mom had to say. As bad as that might sound, I just had no interest in or patience for the minutae of her day-to-day life.

We thought on this, and argued, and sent annoyed emails back and forth. Eventually we compromised on this plan:

-I needed to contact home once d ay, whether by email, phone, or voice mail, just to let them know I was still breathing/things were going well.

-I needed to have two conversations a week with my parents on the phone. By reducing the frequency to twice weekly, we only touched on interesting topics: movies seen, big decisions made, relatives visited, etc. It also was easier to schedule two 20-minute blocks of time into my week than 7 ten-minute segments. Finally, I knew if my mom called a t some time other than the scheduled times that the call was important and I had to pick up because there might be a family emergency. Previously I had just ignored most of the calls, which means I had a good chance of missing an important call from home.

That is simply the schedule we use, but any form of organization you can provide for the contact is a good idea. It leaves both of you knowing what to expect, which eases the anxiety and thus increases the chance of the desired event actually occuring.

If phone calls really are out of the question, consider using skype. It is a video-phone service free on the internet that lets you chat while seeing the other person, making body language visible and lip-reading possible, and generally eases the whole phone conversation process.

I also increased the frequency and length of my calls home as the school-year progressed and I settled into a weekly schedule. Maybe your son can only handle 1 call /week right now, but by spring semester will be able to handle two or even three.

When talking to your son about the importance of staying in contact, try to use logical, practical reasons (you know us Aspies and our logic). Things like: It lets me know you are not hurt, and lets you know everything at home is fine. And, from home, I cannot know anything about your life at college unless you tell me. I am curious about your experience and would like to know when important things happen to you. The more rationality you can provide, the higher his chance of listening.

Best of Luck!

Help Make This Blog Better

With my blogoversary only a week away, it is time to start considering my goals for my second year of blogging. So if you are a relatively consistent or veteran reader, please answer any/all of the following questions in the comment section:

• Which features do you find most useful on this blog?
• Which do you find most interesting?
• Which features do you find least useful/interesting?
• What topics would you like to see discussed in year two of Spectrum Siblings?
• What other changes would you like to see made to this blog?
• If you can recall, name (or describe) a few post which you found to be particularly interesting/well-written/insightful/useful.

Thank you for your assistance in making Spectrum Siblings the best blog it can be.

Creating Conversations: Using Scripts productively

I mentioned when I started working with ESL students that I thought some of their resources might also be useful for autistic individuals and vice versa. And though I had found a few connections, the first real solid link was founded yesterday.

I do oral practice with students whose native language is Mandarin but who plan to pursue graduate work in either America or the UK. These last two weeks, the students have been bringing in their own materials that they wish to read aloud, in whatever area they think they need the most help.

One of the areas where they really struggle is “social” or “conversational” English. Partially this is because these words are not taught in classrooms, but also because our culture dictates how we respond to certain situations. For example, in the United States, a customary conversation about greiving will go something like:

• Hey! What’s wrong?
• My pet Fido just died.
• Oh I’m so sorry! Is there anything I can do?
• No but thank you. Anyway, have you heard about the Steelers game?

Both an Aspie and someone unfamiliar with American culture might get stuck after line two. How do you respond to news like a Pet’s death. Saying “I’m so sorry” doesn’t come natually because it doesn’t make much sense. You didn’t cause the death, so what have you to apologize for? Then asking “Is there anything I can do?” seems an odd line because what could you really do? Beyond perhaps driving the person to the funeral, what else can really be offered?

But it is social custom to use these lines. When the news of a death is released, and those lines don’t follow it, the conversation stalls as the participants are both left confused and naked in this conversation not based in social formalities. When these lines are presented, the conversation can flow forward onto another topic.

But a foreign exchange student (or an Aspie) might not be aware of these social conventions, leading the conversations to always stall out.  For this reason, conversational phrase books are made. In the particular version my student was using (which I thought was ideal), a topic was given (we worked on sympathy and commiseration), and then 6 example conversations were given, consisting of 5-10 lines a piece, and representing both sides of the conversation. Then, after the example conversations, additional phrases which might occur or be useful were offered (for example, ‘Cheer Up’, ‘Don’t lose hope’, ‘Tomorrow is another day’)

I could see this book as serving two possible uses for autistics.

One, it could be read individually to gain familiarity with the way such conversations are held. Many people acquire these patterns from reading fiction novels, but many (though certainly not all) autistics do not enjoy reading fiction for various reasons. But with these phrase guides, it is possible to read the snippets of conversations that would be useful to incorporate into speech without wasting time on backstory and furthering the plot.

Additionally, these conversations could be used as scripts for role-play, either in a social group or with a parent or sibling. This way the individual is able to practice the conversational techniques as well as switching perspectives, without having to devote energy to develop the phrasing necessary for the conversation. Then in a real environment, hearing one of the phrases from this script could trigger the correct response.

The book my student was using was designed for individuals fluent for Mandarin. I am still looking for an English equivalent and wil update when I find one.

Creating A Functional Schedule

One of my greatest weaknessess is in the area of executive functioning. I am simply a terrible planner. I can never keep track of all my activities and often find mself scrambling at the last minute to finish something I could have done stress-free a week ago. I’ve tried planners and to-do lists, reminders on my computer and phone, but nothing could really get me organized.

This semester, however, has been stress-free when it comes to homework. I’ve yet to find myself doing at the last minute what I should have done previously. The reason? I finally have a method of organization which can encompass all my needs.

Here’s how I work my schedule out.

On Sundays, I create a document titled “This Week’s To-do List”. Then I begin listing items, the first always being “create to-do list”. After each activity, I list the time I expect it to take, followed by the date it is due. For longer projects, I create a subheading. So for a paper, for example, I might write:

-English Paper (8hr) (Next Fri)

• Compose thesis (.5 hr) (M)
• Write Introduction (1 hr) (T)
• Create Outline (2hr) W
• Meet with Professor (1/2 hour) Th
• Write first draft (2hr) F
• Revise (1hr) (S)
• Meet with Professor (1/2 hr) T
• Finish final revisions and print (1hr) Th

This way, I can check off completed items one step at a time, and feel as if each hour spent I actually accomplish something rather than simply chipping along at a megalith. Also important is the fact that I do not cross off or delete finished items, I merely italicize them. This way, when I get discouraged and feel as if I have gotten nothing done, I can look at the list and marvel at my accomplishments.

Beneath my list of assignments, I create a list of contacts I need to make during the week, including internship inquiries, work schedule determination, tutoring times, and meeting for meals with friends. I follow the same procedure as above, listing the date this must be accomplished by and the time it will take to perform.

Below this, I create a schedule for myself which changes each day. Here, each day is separated into X hour-long chunks. The goal is to finish the day with 4 uninterrupted hour chunks during which I can participate in my hobby, with the remaining day filled in with classes, assignments, and around 2 hours worth of fifteen minute periods during which I check my email, facebook, and twitter. By scheduling time for my distractions, I am able to block out the thought of them while working and thus accomplish more.

Finally, at the bottom of the document, I create a pack list, which includes everything I will need for the day. This is very detailed so that I am sure to leave nothing out. For example, my list for tomorrow reads:

• Lifespan Hw (Printed)
• Lifespan Notebook
• Lifespan Text
• History Notebook
• History Text
• English Text
• English Note cards
• English Notebook with Outline inside
• Tutoring Schedule
• Tutoring Material
• Planner
• Printed To-do list Document
• 2 writing utensils and a highlighter
• Wallet, keys, phone, watch, camera.
• Hobby Materials.

By creating a list for myself, and including everything I will need for the day, I can reduce the number of trips I need to make back to my room, increasing the amount of time I can be productive. I can also check myself periodically against the list to ensure I have not lost or misplaced any key item. Finally, when I become stressed and feel like I must be forgetting something, I can check the list and remind myself I have everything under control.

Although the end result is somewhat complicated, it is also very thorough, and has certainly kept me on track for this semester. Do you use a specific to-do list method to keep track of your activities?

Are all autistics introverted?

I received an interesting search query this week, and I found it quite odd because I was just explaining this notion to a friend a few days before. This search term read: “Can you have an autistic extrovert?”

Autistic individuals, like their neurotypical counterparts, come with the full range of personality traits. There are some, like myself, who are quite introverted, speaking only to close friends and never in groups. And there are some who are extroverted, always ready to meet a new friend or lavish some affection. And there are of course some who fall in between, or who show varying levels of extroversion depending on the circumstance.

What I find interesting is that opinion on this question tends to fall either in the extremes with the assessment that either all or no autistic individuals are extroverted. In the social group I helped run, one of the kids was described to me as “one of the Asperger kids, so very in your face, won’t be quiet, needs your attention-kids”. And although she was a very extroverted individual, she was clearly not the only possible face of Asperger’s. Others have told me, when I’m describing Joh that, “he doesn’t sound autistic. Not if he tries to get involved in games and get people’s attention.”

One reason I think the “all autistics are introverts” stereotype is the idea that most autists, regardless of general temperament, need time free from people and the social demands they bring. Others then generalize this need for solitude with a constant need to escape people and then conclude that all autists must then be introverts.

I am curious about your experience with autism and temperament.

 If you are the parent or caretaker of an autistic individual please answer this poll.*

 

 

If you are autistic,  please answer this poll. **

* If you have multiple children, please feel free to vote once for each child.

**If you are the parent of an autstic individual, and are on the spectrum yourself, please vote once in each poll.

I am very interested in seeing the results.

The Truth About Tourette’s Treatment

If you have been looking at the list of posts I’ve written on Tourette’s, you may be a bit curious as to why I haven’t devoted any posts to Tourette’s treatment. And the main reason is, there aren’t any proven treatments for Tourette’s. So here’s a list of things which research has shown to be at least somewhat effective in treating some forms of Tourette’s:

• Neuroleptics such as Risperdal (however some see tics worsen, and many experience adverse side effects)
• Neuroleptics on low doses AND a nicotine patch (reduces the side effects, may have unknown adverse)
• Nicotine alone (more anecdotally and from case studies. Research forthcoming)
• Zoloft  or clonozopine (usually only when OCD tendencies are also present)
• Cannabis (same situation as nicotine)

Here are some non-medical interventions that have shown some promise:

• ABA therapy on a reinforcer for X number of seconds spent without ticcing (according to a certain protocol. Be sure to have supervised by professional)
• Occupying the hands with fidgets and the mouth with gum
• Weighted clothing/blankets

The truth is though that no treatment will work for all individuals, and there are some who will not find an effective and not adverse treatment protocol.

Note: When evaluating therapeutic effectiveness, note that the natual course of Tourette’s is to wax and wane in tic frequency. This may sway results.

Tourette’s Vs. Commonly Confused Diagnoses

I was examining my search terms list for the past month, and I found several themes arose quite often. One common interest was in discriminating TS from other similar disorders, so I thought I would devote a post to differential diagnoses of Tourette’s Syndrome.

 Tourette’s Syndrome vs. Tics

Tourette’s Syndrome is a disorder characterized by the presence of both multiple motor tics and at least one vocal tic for a period of longer than a year without more than a 3 month break in symptoms. It is possible to have tics and not qualify for a Tourette’s Syndrome diagnosis. Motor tics are very common for boys between the ages of 4 and 8 and often fade after only a few months.  Individual vocal tics (without motor tics) are rarer, but do also occur, and often within the same age range. These are called Transient Tic Disorders, and are often not a sign of underlying neurological issues. It is also possible for a person to have only one motor tic which lasts for an extended period of time. This is reffered to as a Chronic Tic disorder, and may need medical treatment, depending on the severity of the tic and its interference with an individual’s quality of life.

Tics vs. Compulsions

This is a rather grey area. Tics can be compulsions, but this is not always the case. Many Tourette’s tics are compulsions. They are accompanied by a growing need to release the tic, which, if ignored, can entirely consume the individual’s  concious thought. Releasing the tic then ends the need for a period lasting from a few seconds to several minutes. This is very similar to OCD compulsions, which involve a growing need to peform a certain activity (like say a certain phrase, touch something a certain number of times, etc.) which is then released by performing this action. For this reason, some researchers consider Tourette’s a very particular type of OCD and research regarding the brain regions affected in each disorder lends some credence to this claim. These tics can often be reduced using medications typically effective for OCD such as Zoloft and anafranil, which reduce the compulsive urge and therefore the tic.

There are also tics, however, which are not compulsions. These are motor movements or vocalizations that do not involve a pressure to perform, and which the individual has absolutely no control over (contrast to compulsive tics where the individual can control when the tic occurs, but not that the tic will occur). The individual has no forewarning that the tic will occur, and may not be aware they are performing the tic. These tics will not be affected by medications which reduce OCD symptoms, but may be helped by nicotine, muscle relaxants, and neuroleptics such as Risperdal.

Tourette’s Vs Epilepsy

Before explaining the differences between Tourette’s and Epilepsy, it is necessary to establish what Epilepsy is. Epilepsy is a neurological syndrome characterized by the presence of more than one seizure across an individual’s lifespan. Seizures vary in type, intensity, and reccurrence, but can be divided into a few key types. First, they may be partial (affecting only a certain body part) or general (affecting the whole individual) and simple (conciousness is maintained) or complex (conciousness is not maintained). The four main types are partial, absence, myoclonic, and tonic-clonic. Absence seizures are characterized by periods of staring and non-responsiveness for a period of tenths of seconds to a minute. Tonic-clonic seizures are what people typically picture when mentioning seizures, with flailing body parts and shaking. Myoclonic seizures involving a twitching or jerking movement.

Myoclonic and simple partial seizures are the only two which would really be confused with Tourette’s. I have a friend who has frequent myoclonic seizures, but not TS, and our outward presentation can be very similar at times. The difference can be found, however, on an EEG. While her seizures will show up on an EEG, my tics will not. If a neuro cannot determine the difference between a seizure and a tic by observing the presentation, an EEG will often be ordered. Simple EEGs can be conducted in less than an hour, although overnight EEGs are required if the seizures are infrequent or only occur during sleep.

Tics vs. Stims

Many people confuse tics with stims/stereotypy. For this reason, I have written a full article delineating the difference which can be found here.

For additional information about Tourette’s, I encourage you to visit this list of links.