No More Misunderstandings . . .

When it comes to the physical act of writing, it is made difficult for me by something called Motor Dysgraphia. The fine motor muscles in my hand used for writing don’t coordinate well for effective writing. When I write I end up gripping the pen or pencil tightly and have to concentrate to write legibly. By the time I’ve written a few sentences my hand is already beginning to hurt. Fortunately I’ve been able to reduce my writing to signing my name and the rest I can type.

If you have a school aged child with these challenges the school can often be slow to adapt, accommodate and may even continue to push your child to the point that your child begins to resent the homework, the teacher etc. This can be prevented and your child can learn the ways to master written communication in a way that works for everyone. Especially him or herself.

This is an issue I’ve helped many clients resolve and it’s wonderful to see a child move from frustration to motivation. I can offer you the same guidance so let’s get started. You can email me at aspieman@gmail.com

A very underreported sensory experience is one called Synesthesia. Common forms of synesthesia are when hearing a sound produces the visualization of a color, or when seeing letters or numbers as having specific colors associated with them.

I experience a few forms of Synesthesia:

The first is Sound-Visual: High pitched sounds cause me to see bright white while low pitched sounds cause me to see dark black.

Another neat part of the Sound-Visual is what happens when people are talking. When I’m listening to a friend or client speak I can see each word they say scroll through the air. This way I’m reading it as well as hearing it. This allows me to catch every word a person says. If a word repeats itself in a conversation sometimes I see it in darker color (like bold type), if a person emphasizes that word while speaking it literally jumps out at me like 3D.

The other form I experience is Sound-Tactile:

A buzzing sound not only feels like a vibration in my chest but also a tickle in my throat. I often end up repeatedly coughing until the sound stops and continue to until the tickle stops. Low tones do this to me a lot. When combined with the Sound-Visual I see darker colors and end up coughing. Needless to say when I have the choice I do my darnedest to stop the cause of the sound or I have to get away from it.

One curious aspect of this is that I have a tendency to feel certain types of voices in different parts of my body. I haven’t shared this one with anybody (until now) because I don’t want people asking me where I feel their voice. For those closest to me I will share. When my wife talks to me I feel it in my chest, upper arms and the sides of my head. When my oldest son talks to me I feel it in the sides of my head. When my middle son talks to me I feel it in my throat, chest and stomach. When my youngest son talks to me I feel it in my eyes, forehead, the sides of my head and chest.

Please note that the sensations aren’t unpleasant, but they are noticeable. The best way to describe the sensations are a gentle pressure. It’s quite interesting and adds a unique dimension to the experience.

It gets overwhelming in a room full of people because I begin not only hearing their voices, but seeing their words and feeling their voices as pressure on various parts of my body. It can saturate me and get overwhelming very quickly.

In my consulting work I’ve helped clients identify sensory experiences they didn’t realize they were having. Experiences that others would dismiss as impatience or “being too emotionally sensitive.” Experiences that were legitimate and yet a source of disrespect from others because neither the Spectrumite or those around him/her knew what was going on. Once we identified it and developed strategies to manage it. Things changed for the better.

In my life Sensory Overload is when I’ve reached my point of neurological saturation. My nervous system is hypersensitive which means things are brighter, louder and my skin more sensitive than the average person. A normal high or low pitched sound or sensation for an average person can register anywhere from 10-50 times more powerful for me.

Sensory Overload is a continuum from anxiety, to frustration to complete melt or shutdown. At it’s worst I feel sometimes like I have a bad flu, like I’m intoxicated, or sometimes I’m so exhausted I can’t think straight, and am almost at the point of tears. My only remedy has been to lock myself in my room and block out all light and sound until I recover.

The worst episode of overload I experienced was shortly before my Asperger’s was certified. I attended the yearly festival in my home town and spent five hours around loud conversations, loud music and hundreds of people brushing against me. When I got home I collapsed into bed and found the next morning that I was too weak to get out of bed.

I spent the entire weekend in bed and was unable to work the entire next week due to extreme fatigue and flu like symptoms. My Doctor ran a series of tests looking for a mystery virus but found nothing. After my Asperger’s was certified I learned so much about my sensory sensitivities that I concluded this episode was a clear case of severe Sensory Overload.

My greatest frustration in coping with my sensitivities is the inability of the neurotypical world to fully comprehend and appreciate the seriousness of this. My previous job required a lot of driving, as well as visits to various locations with different sounds, lighting and activity levels. Every day at work was a sensory assault and I ended each day exhausted (not tired) exhausted.

I was unable to get them to understand and work with me to allow me sensory breaks to decompress so that I wasn’t so exhausted at the end of the day and could remain productive throughout the day. In their minds any nonproductive (down time) must be made up for by working longer. They just didn’t get it. I did the best I could each day. Fortunately I now work for myself and can take care of myself and take care of business in a more balanced way.

In the lives of my clients, especially school aged children. They are often discouraged from taking care of their sensory needs because it inconveniences the teacher. They are encouraged to “cope better,” “Wait a little longer,” or worst of all “Prioritize instructional time so they don’t fall behind.” The result of this approach is uniformly that the Spectrum child begins to be angry at him/herself when beginning to feel overloaded (which they cannot control). The desperate need to meet their own needs ends up getting them criticism instead of support. The child ends up bottling the frustration inside until reaching home only to meltdown, or melting down at school and receiving the worst kind of support. Sometimes going as far as the embarrassment of physical restraint. I have had to educate quite a few parents and teachers on how to meet the child half way so everyone wins. Especially the child.

Deep pressure is best, as from a firm hug or a deep massage. Light touches drive me up the wall and I actually become defensive especially when I don’t see it coming. When someone brushes up against me at the movie theatre or any other public place I get angry though not openly. I don’t yell at the person but inside my head I’m screaming “Don’t do that.”

When someone greets me by patting me on the back it makes my skin crawl. When someone touches me lightly I apply deep pressure to the area by rubbing it and the tickle or itchy feeling resulting from the light touch goes away. I need to wait until the person who just touched me looks away before I can do it to prevent the awkward “Why are you doing that, do you think I have germs or something?” When a person stands too close to me I get nervous for fear they’ll touch me lightly because I know how I’ll feel if they do.

Handshakes are a big deal for me sensorily. I hate handshakes. The inconsistent pressure, light, loose, tight, TOO TIGHT, is bad enough. There’s also soft, clammy, dirty, scratchy. Now imagine being in a room where every new person you meet wants to shake your hand. I can become overloaded just from the handshakes that occur from the first five minutes of being in a room.

Showering is uncomfortable for two reasons. The light touch of each water droplet as it hits my skin feels like little pin pricks and can be overwhelming if I stand under the shower. If I don’t stand under the shower then I get cold. When it’s time to dry off, rubbing myself dry with the towel feels like sandpaper unless I press really hard with the towel. Don’t be afraid, in spite of this I still shower so you won’t have to worry about being around me.

A skill that is critical for anyone on the Autism Spectrum to learn is how to negotiate touch and physical boundaries. Many social interactions require touch as part of the interaction and Spectrumites are taught that they must touch and “deal with it.” This is a lose-lose proposition because though touching may satisfy the social convention it can negatively impact communication which is after all the most important part of the interaction.  There are ways for Spectrumites to casually explain their boundaries so as not to offend and the clients I have taught them too have experienced a new found self respect and appreciation from those they interact with.

I prefer spending quiet time alone or with no more than a few other people. The more people, the more noise and movement therefore the more overloaded and anxious I get. My hearing is such that when more than one sound or voice is occurring simultaneously the sounds are processed in my brain into one noise. Therefore if there are too many other sounds in the room I really need to concentrate to determine what’s being said by the person I’m talking too. This is exhausting and makes conversation a burden under these circumstances. It’s for this reason among others that I avoid social gatherings where many people will be in attendance.

In terms of hearing all sounds as a singe noise. If I’m talking to someone in a room with more than one source of sound (TV, radio, other people talking, etc.) I don’t hear everything they say because the other sounds in the room are like flies buzzing around me. My brain thinks all sounds are important and doesn’t sort them out very well so I have difficulty prioritizing what I want to listen to.

I have difficulty multitasking my senses making it necessary for me to hear you or see you but usually not both in an efficient manner. Therefore I also spend much of the time avoiding eye contact with the person I’m talking to in order to hear them better. I’ve also learned to use gestures to look like I’m thinking so the person doesn’t think I’m ignoring them. I do find it easier to look a person in the eye if I’m comfortable with that person and the environment is calm. This means minimal sound, few visual distractions and comfortable lighting (not fluorescent).

For the longest time I forced myself to make eye contact because I was criticized when I didn’t. I found that after long conversations I was anxious and exhausted for making myself do so. After I was certified with Asperger’s and learned why making eye contact was so difficult for me I promptly reserved the right not to make eye contact when it was uncomfortable to do so. Unlike many Neurotypical Multitaskers, I listen better with my ears than my eyes.

There was an initial and painful rebellion amongst my Neurotypical peers who wanted my eye contact back. Some had even recommended therapies to help restore it. In their minds it seemed that I was being dishonest or evasive when I didn’t look at them. They’d ask why I used to look at them and no longer did. When I explained it they wouldn’t accept it. They claimed if I was able to do it before I should continue to do it. They didn’t seem to understand that it was unreasonable to ask me to do something that made me uncomfortable in order to make them comfortable. They didn’t realize their request was win-lose and was in my experience a barrier to communication. Some people just don’t get it.

I can become quite excitable and verbose when discussing my areas of interest: religion, psychology and thinking in general and I encourage others to politely interrupt me when necessary because I can easily forget that someone else might want a turn.

The same can be said of situations when I’m nervous or bored. I talk almost incessantly as a way of discharging my nervous energy. My sense of humor seems to go into overdrive as I blurt out nearly every observation that strikes me funny. Sometimes the response is laughter and sometimes I get in trouble.

The most common topic of discussion with clients is how to socialize when it is difficult to even be in the space the socialization is taking place. There is so much information coming into a Spectrumite’s nervous system that he/she can neither effectively tune out or process. The first step is to identify what information is the most problematic (sometimes it’s simply the amount and not as much the type). The effect it has on the Spectrumite that makes socialization more difficult. The final aspect of the discussion is how to effectively negotiate socializing in a way that works for all those involved. With few exceptions, my clients ultimately discover that their peers appreciated being educated on their needs and how to best support them. Educating them effectively is the key.

As with walking, driving produces similar challenges. I watch the road or the back of the car in front of me when I drive in order to maintain (as much as possible) the feeling of being grounded. I not only watch the road because the road remains level I also do so to minimize the effect of everything else moving around me such as the other vehicles on the road.

The more moving objects around me there are to keep track of the more panicky I get. When I approach an intersection I’m fine as long as all of the cars are still. But if any car is approaching the intersection to stop or is turning a different direction I get panicky because I now have peripheral input that demands my attention and requires me to take my eye off my visual ground.

I also discovered that looking at the ground serves the dual purpose of maintaining a solid ground and avoiding the brightness of the sunlight. Wearing sunglasses with polarized lenses reduces the glare of light so much that I can look up more when I’m driving. I still look down when the movement gets to me and I need to ground myself.

Driving to new locations is stressful when following written directions not only because I have to continually check the map but because I need to take my eyes off the road to look at street signs. My stomach gets queasy when I look up and looking for street signs requires me to look up a lot. Even if I know where I’m going I sometimes miss my turn because I’m so focused on the road. I have solved this problem with a talking GPS.

One benefit of driving this way is that I’m so focused on what’s happening in front of me I’ve never caused an accident because when a driver stops in front of me I know it immediately because I’m not looking around. Others have hit me before but it’s always been their fault. I do take my eyes off the road on occasion but only when something catching my attention peripherally. I look up long enough to identify it and then look at the road again.

Roads that are not level are interesting because the slightest change in elevation causes me to feel a little tickle in my stomach. Now imagine feeling this over and over again. Bumpy roads are the worst because as the car absorbs the shock of the road I can actually feel the bumping in my ears and it feels like someone is pounding on my eardrums.

With all this movement I often find that when I arrive at any destination I find it difficult to get grounded right away. I often step out of my vehicle and stumble a little for a minute or so until I get grounded again. Anyone watching this who didn’t know any better might assume I’m a little intoxicated. Yes driving is difficult and tiring but I can get where I’m going.

I work with clients who want to drive and don’t understand their nervous systems well enough to realize it would be dangerous to do so. I have other clients who have parents demanding that they get their license and are unable to explain why they are afraid to do so. I have had much success translating the experience of my client’s to their parents and ultimately problem solving the long term challenges of transportation in the life of my clients.

Walking or moving my body in general has always been a challenge. One of the aspects of my unique neurological profile is something called Dyspraxia (read more by clicking on the word).

When I walk you will find me looking at the ground. Were I to look up and take in the scenery around me I’d lose my balance and begin walking any direction but straight. I also feel uneasy and ungrounded. My vision and the part of my brain that determines where my body is in space (proprioception) don’t communicate well with each other. Looking at the ground helps me by allowing me to focus on one immovable surface that remains level so I can feel grounded. It also helps reduce the number of things I can see moving around me. My brain often can’t tell the difference between whether I’m moving or the object I’m looking at is moving and I can become unbalanced and sometimes feel dizzy. So on elevators or escalators I need to hold on tight to something to maintain my balance. Trampolines are out of the question because the severity of the tickle I feel in my stomach often takes my breath away.

I also look at the ground because of extreme light sensitivity. Looking down indoors helps me avoid the fluorescent lights, outdoors it helps me avoid the bright sunlight. In the winter looking down is sometime worse because the snow is incredibly bright. Sunglasses in these instances are very helpful.

My body feels heavy all the time because my muscles don’t contract evenly due to the fact that they don’t coordinate with each other effectively. Having to hold my body up while standing still or sitting becomes tiring very quickly. I sit as often as I can and when I do I need to slouch or lean to avoid the exhaustion of holding my body up.

It breaks my heart each time I hear of a Spectrum Child with unidentified Dyspraxia who is repeatedly told to “sit up straight,” “don’t slouch,” or is ridiculed for clumsiness. The child doesn’t know why moving his/her body is so difficult and tiring. The adults around them accuse them of being lazy. They simply don’t have a clue. Once I’ve educated my clients and their families about this issue I in turn instruct them on educating the school. The right information presented in the right way can make a world of difference in a child’s life.

Yesterday was my first Thanksgiving with the new in-laws. I’ve met many of them already (about 10 or so) and they have been truly wonderful people. In typical Aspie fashion I was increasingly overwhelmed with tremendous anticipation anxiety. I was informed there would be nearly 50 people at Thanksgiving dinner. Cathy noticed I was nervous and when she inquired I said, “I don’t know what to do.” Having always done Thanksgiving with my family it was routine. I would sit in a room with a bunch of Aspies who wouldn’t talk to each other until dinner. Dinner conversation consisted of very select bullet points and then we would sit around a while longer and go home.

Cathy’s family is very large, and very social. Once we were there (got there early), and more people arrived I found myself in a back room of the house, tensing up and shutting down.  Cathy asked if I was okay, I replied, “I don’t know what the rules are. I don’t know what to do.” This dear, sweet angel who is my wife of one week now stayed close to me the entire time. I was able to loosen up and crack a few jokes as a few of the more familiar relatives sat at our table and we engaged in friendly conversation.

When we moved to the larger room for dessert, it was louder, brighter, and contained several very young children who were reaching their saturation point as well. Their inconsolable crying was evidence of it. I was able to tune out for a few minutes while sampling a piece of the most incredible homemade pumpkin pie I’ve ever eaten. Not long after that I was snapped to attention when Cathy placed her hand on my shoulder. I was completely tuned out when she did that and of course didn’t realize it. She asked, “Are you ready to go?” I can’t remember my response but she said, “I’m ready to go.”

We said a few quick goodbyes and as we walked down the driveway she asked why I hadn’t said anything sooner and that we didn’t have to stay. I said, “I didn’t want to be a party pooper.” This episode reminded me just how much I have constructed a life of familiarity around me. It has been a long time since I walked into a situation where I felt paralyzed because there were more unknowns than knows. I spent the night quiet, allowing people who knew the rules to come to me so I could follow their lead.

It just goes to show that with all I know and all of the skills I’ve learned over the years, I’m still an Aspie and have those new experiences in which I simply don’t know what to do until shown the way. I also have the experiences where too much information to process at once leads to shut down. Such is the journey of my life. Keep Moving Forward.

Yesterday I attended a resource fair with 250 other providers. The hosts of this event had planned poorly and I had to share a 6 foot display table with 3 other people. They were very pleasant but it was too close for comfort. Add to that the unbearable decibel level when the event reached it’s capacity. For at least 90 minutes I clenched my fists, rocked back and forth on my feet and tensed every muscle in my body. Everything I could to stave off complete shutdown as my nervous system was progressively overloaded by the deafening noise and the claustrophobic workspace.

All this as I used every ounce of concentration to attend to the people who stopped by my small piece of the table. It was so loud and my audio processing issues were so taxed that even the people standing next to me were impossible to hear at times as my brain could no longer differentiate one sound from the next. As much as people get on our cases and demand that we be competent at the skills required in a certain setting. They often fail to realize how much is required of us just by being there.

By the end of the event I staggered out and drove to my office struggling to keep my eyes open as my brain screamed “No more.” I had but two hours before I would need to give my all to the 5 clients I had scheduled back to back for the afternoon. With the help of my dear Cathy who came to the office to provide some much needed deep pressure, and a lot of caffeine. I got enough focus and energy back to make it through the day. By the time I got home I was ready to throw up from how disorganized I still felt. I climbed into bed and began shaking as my body was letting go of the tension of the day.

Why did I do this? I’d attended this event before and it wasn’t like this. Last time I shared a table with one person and it was maybe half this size. If I do this event again I’m taking the rest of the day off.

I had a long day yesterday which ended with a trip to the bowling alley with the boys. To say I was exhausted afterward would be an understatement. Thus I had to reserve my mental energy for my clients which in order to do so required me to attend to little else. As I was entering my office building I passed the mail carrier. She walked through the door and as I saw it, I took the door as she was about to let go. She said, “You’re welcome.” Apparently she felt she was holding the door for me and entitled to a thank you. This is an example of a frequent experience we Spectrumites have. When we walk through our day making an effort to preserve our mental energy often requires us to minimize or outright avoid even these little moments of connection. Before I could say anything in response she was through the door. For all I know she walked away thinking I was rude. All I know is I was tired and focused on getting to my office so I could gather myself before my clients began arriving.