My Process of Blogging

I have been blogging for over a year now.  Although it may seem easy, it is very hard work.  On many days I type only about four or five sentences.  It is just hard to get the motor plans down for typing quickly.  I know exactly what I want to say in my head, but getting those thoughts to flow into a keyboard from my fingers takes intense concentration and it takes time.

In many ways, although it is much easier for me to type than to speak, the same motor planning difficulties that make speech hard for me, make typing hard for me.  Sometimes,  I know what I want to say in my head, and I will type a completely different word and I look down at the screen and am surprised.  Certain words just get stuck in my motor plans like “this” or “yes” and I type them instead of some other word that is very different in spelling.

This, then takes much editing and I have to go through what I have typed, rethink it, and then retype it.  This editing sometimes takes longer than the actual writing.  It is tough, but I enjoy doing it.

I hope that by continuing this blog, I may help others understand autistic people a little bit more and accept us for who we are and not who they think we should be.  We are not neuro-typical.  We process things differently.  We struggle with communication in the conventional sense, many of us have problems with motor planning and can’t seem to get our bodies to do what our minds want.

I suppose that I am asking that if you run across an autistic person in a store or at the mall who is running around or acting out in what seem to you to be strange ways, do not judge.  There is a reason behind that behavior that if you knew, you would probably understand.   I hope, in the upcoming year to continue to offer thoughts on the diverse appearance of autism.  Autistics are not all alike.  Each of us is unique as is every human, but we do have things in common that make us autistic.  Those are the things I will talk a little bit about from my experience.

I am glad to be doing this blog and it has really expanded my ability to help others out and give ideas to professionals.  At the clinic where I receive speech and language therapy, there is also a school for children with speech and language impairments.  Some of these kids are autistics and I am becoming more comfortable answering questions that the teachers may have regarding students in their classes and have gotten positive feedback from many of them.  I feel good about helping out and I am glad that my thoughts and advice have helped other autistic kids.  So, in the upcoming year, please feel free to let me know if you have any questions I can help answer.  I am always looking for suggestions for blog topics.

Teamwork and Independence – we all need supports.

“I go to college.”  This is something that a lot of young people in their twenties might say to their friends.  It is something I can say about myself.  However, it wasn’t something that was always in the books for me.

Before, I talk more about that though, I do want to mention that I don’t think everyone needs to go to college.  There are many talented and wise people out there who have never set foot in a college classroom and I understand that completely.  However the point of my post is that college is a very real possibility for kids with autism and sensory processing disorders.  It is something that I wanted and something that maybe wasn’t in my future until I was able to learn to communicate fully.

College is hard for me.  I face a lot of challenges that neuro-typical students do not have to endure.  Let’s face it, colleges were built for neuro-typical students with no serious consideration into making them accessible to neurodiverse people. Large auditoriums as classrooms with very little noise absorption and fluorescent lighting that buzzes and flashes are a few things that immediately come to mind in terms of environmental factors.  Professors and administrators who refuse to accommodate needs of neurodiverse students is another major problem.  Some of us may need to get up and take a break during a lecture or we may make some noises and do what could be perceived as odd actions because of the aforesaid environmental factors.  I have had experiences where I was forced to sit through a class and be observed by administrators from the office of disability to determine whether or not I could “behave” appropriately in a class.  It is an embarrassing and humiliating situation.  I have had individuals question my communication assistants as to whether or not I was really doing my own work, whether or not I was really typing by myself.  Again, it is humiliating and embarrassing to be questioned about such things, but it also makes me angry.   This is where self advocacy is so important though.

However, confrontational situations are hard for me.  For 15 years the only way I had to express my anger or humiliation was through behaviors.  I did not have the ability to express the words that were in my head, so I acted out my anger and humiliation.  This was not necessarily the best option, but it was the only one I had.  When I began to use rapid prompting and then typing, I was able to much more easily express my emotions, but I still to this day have a hard time during confrontational and emotionally charged situations.  I revert back to using behaviors and that is not a good thing to do. 

In order to achieve independence, I need to control this and I need to trust in my ability to communicate. 

I think of the many autistic kids out there and how they are probably struggling with this same issue.  I wonder how many parents have accepted the fact that their autistic kids may never communicate or may never go to college or have a successful career.  I think of professionals who do not assume intelligence, but instead assume cognitive disability.  I think of behavior people who try to stamp out behaviors by reinforcement and punishment when that behavior has its source in a desire to communicate.  I faced these challenges and I still face them in college.  Fortunately I have a support network to help me.  A group of family, friends and therapists who help me to get my word out and truly understand that I am an intelligent being with goals and dreams but that I act a little differently than others because of my sensory and communication needs and my difficulty with motor planning.

Independence does star with one’s self, but it does not end there.  No person is truly independent.  We all depend upon a support network.

Autistic individuals need the assistance of others just as neurotypical people do.  This is especially true when young or when you have trouble communicating.  Understanding friends and family can help with those situations.

So here are my points I want to make for this entry on independence.  It may not seem related but they are because autistic individuals can never be independent unless the majority population of neuro-typicals understand us and allow us to be independent.

  1. Please assume intelligence.  It is so demeaning when someone talks about you like you have no idea what is going on.  It is demeaning when a professional tells a caregiver to just accept the fact that the dreams we have will never come true – without the professional even knowing those dreams because we can’t communicate.  Do not assume that because we are autistic we cannot think for ourselves.  Do not assume that we are unable of having intelligent thoughts and insights.  Do not assume that we are unable to communicate because we can’t talk.  Do not assume that because we type or point to pictures or letters on a board that we are being prompted to do so and not offering our own opinions and insight.
  2. Please understand that what you may think are odd behaviors do serve a purpose for us. They may help us with our sensory regulation.  They may be ways of communicating.  Don’t just look at them at the level of disruptive behaviors, but try to look at why those behaviors are happening.
  3. Please understand that we all have dreams and it is not kind to crush those dreams because we do not fit the normal expectations of society. Autistic people have many gifts that we can offer society.  No one is perfect at everything and we should not be expected to be perfect at everything either.  We may have difficulty talking but we may be great at typing.  We may have difficulty with writing but we may be great with arts like drawing or painting.  We may have difficulty paying attention to facts presented in school, but we may be an expert on one particular area that no one else is an expert at.

I guess I am hoping that if we all remember these things we can work together as a team.  It is only through teamwork and support that any of us can become independent.

Communication and Independence

Communication in its many forms is really the key to success in being independent.  It is how you gain information, it is how you socialize, it is how you access your environment.  You need communication – whether it be oral, with a computer, rapid prompting or whatever.  It is essential for independence.

Being a successful “on the spot communicator” is still difficult to me and I often think I present myself as someone who has “no clue” as to what is going on around me.    I have difficulty communicating.  I realize it, but to become independent in life, it is a challenge I am willing to work on.  I work on it daily, learning new motor plans for typing and trying to get comfortable enough to just sit down and type without someone next to me, prompting me to keep going.

I have a lot of anxiety about communication.  For many years, I had no way of expressing myself.  I had wanted to, but could not, so I shut down.  When I finally started to type, I had so much anxiety over it.  I was afraid that I might say something in the wrong way.  I still have that fear which is why I prefer to have someone sit with me while I type.  Sometimes you will see the person’s hand on my back.  This isn’t because they are prompting me in any way.  It is a comfort thing for me.  I want to know and have a tangible sign that they are with me, that they see what I am writing and that it is acceptable. 

I am slowly starting to get over this fear though…

I do type more and more on my own.  These blog entries, for example, I type on my own.  They take weeks but I do type them independently.  Someone is in the room with me, but he is not touching or prompting me, just helping me with some of the editing.

This is a big step for me. 

At this point, I just want to reach out to all those people who may have something to say but can’t because of motor planning issues, because your voice doesn’t work right with your breathing – these are all physical things.  They do not affect your mind.  You have a great mind and push forward to let people see that and know that.  I was lucky enough to have a supportive family.  I am hoping that just having this blog out there in cyberspace, that a caregiver of some kid who can’t talk will see it and begin to understand that just because you can’t talk like neurotypical individuals, it does not mean you do not have something to say.

Achieving Independence – Part 1

No, this is not a post about the 4th of July, but it is about independence… independence in a different sense…self independence.

Independence is hard for me to write about.  It is something that I fervently desire, but it is also the one thing that escapes me.  How do I achieve independence?

Among other things, independence means for me being out of my parents’ home and having my own apartment, learning to cook for myself, washing my clothes, working out money and  maneuvering my way around the town to get to places I need to go.

These may seem like fairly easy tasks for most individuals.  However, I have a different set of obstacles in my way that I need to  analyze  when discerning independence.

Motor planning is probably the biggest problem for me when it comes to tasks necessary for independent living.  I need to practice and practice activities in order to develop a motor plan.  Activities that you may find as easy as washing and drying off with a towel take me hundreds of times of practice before I do it.  Then if anything little changes, it is almost as if I need to start all over again.  Things as different as where the soap is placed or where the towels are located, can mess up an entire motor plan.  This is why I need to have things in certain places and they have to be there otherwise I cannot do the plan I rehearsed so much.

Sometimes motor plans get mixed up in my head as well.  For example, I may have a very well rehearsed motor plan for brushing my teeth and washing my hands after using the restroom.  On occasion, these two motor plans get mixed up in my head, so sometimes in the morning after using the restroom at the therapy institute, I will turn on the water and begin to rinse my mouth and spit the water out before I realize I am doing it – all of this is happening when I should be washing my hands and it drove my speech pathologist crazy until I explained what was happening.

This brings up another very important point.  Self advocacy is very important.  People don’t know why I do the things I do.  Sometimes I do things that frustrate people.  These people know I am intelligent and assume that I should know better when doing things that seem disrespectful or non-compliant.  If I explain, for example, why I spit in the sink when I am supposed to be washing my hands, I find that there is usually acceptance for these seemingly odd behaviors.  I know I should not be doing it, but I have just got my motor plans for different activities mixed up.  Sometimes, it is good to just acknowledge such things so that they are in the open and I can work on sorting them out.

This idea of self advocacy is even more important when living independently.  It is something that autistic people need to do.  Neurotypical people will sometimes see us as odd or having strange behaviors.  They do not understand the differences between us.  These differences impact the way we interact with the environment.  For an autistic individual, the environment can be processed in a much different way that a neurotypical person might process.  Sounds, lighting, music playing in the grocery store can either over work our sensory system or shut it down.  I have problems with such things.  Going to the grocery store can be a challenge.  Certain music acts on my auditory system and gets me very excited and hyper.  It is hard when it is blaring through a store – especially when I am trying to carefully remember each step in a motor plan for buying something as simple as rice cakes!

So, I have to advocate.  I have be comfortable with saying to a neurotypical person that I am autistic and I do these things because my sensory system processes things differently than yours.  It is a hard thing to do and challenges me each day, but it is something that is important to learn for independence.  In some situations, relaying these messages  has to be done through successful communication which often has to be on the spot without any pre-planning.  This will lead into the topic of my next post – being a successful “on the spot” communicator.

So that is just the start of it.  I intend to continue this theme over the next few entries.  I hope my readers will enjoy my perspective.

Speaking in Public, Audiences and Sensory Issues

In early April, I presented on the importance of self-advocacy for autistics at the American Occupational Therapy Association’s annual conference.  I presented along with my occupational therapist, Lisa Parker and my good friend, Professor Kristie Patten Koenig of New York University.

I plan on eventually posting more about self-advocacy and things I spoke about at that specific conference, but first I wanted to do some advocacy for myself by explaining how I deal with conferences.  As I understand it, there are very few people who actually like to speak in front of a large crowd.   I am told that most people get nervous when they have to speak in front of a large crowd.  I am no exception.  However, I do have to learn to deal with things in the environment that neurotypical speakers may not have to deal with.

So what are some of these things?

One of the biggest things for me is the extra noise that a loud crowd unconsciously makes.  I can hear the synchronized breathing of the audience, I can hear when an audience member is out of sync.  I have a hard time ignoring coughing, sneezing, whispering, beeps from electronics and all sort of other things – things even as subtle as if someone is wearing a nylon tracksuit and it rubs together.  Now, in all fairness, I don’t expect people to stop breathing or coughing if they have to, but it is important for me that whispering is kept to a minimum.  I can often hear what they are saying or commenting on and it really disrupts my train of thought.  Sometimes people talk about the presentation and other times they are talking to friends about things that they probably wouldn’t want someone else knowing.  For example, one time when I was presenting at a college, I heard one person talking about his rather private experiences from the previous night to a lady sitting next to him.  He probably would not have wanted me to hear that, but for me it was as if he was yelling and I had a hard time ignoring him.

So, in full disclosure, I feel like I need to always remind people about that sort of stuff at the beginning of the presentation.  I feel as if they hear me, but they do not understand me…I really can hear exactly what one person in the back row may be whispering to his friend about the previous night’s escapades as if he was sitting right next to me and whispering in my ear.  Sometimes it is embarrassing.  Sometimes it is really funny.

I also have a big thing with scents.  I can smell colognes, perfumes and deodorants.  Imagine a blending of 200 different colognes, perfumes and deodorants.  It is the smell of the audience and is sometimes overpowering.  What is also different, is that if I let myself, I can single out a specific scent and then determine which audience member it is associated with.   That can be a real distraction.  One conference I presented at a lady was really wearing a lot of perfume.  I don’t know if it was cheap or expensive perfume, but whatever it was, it really bothered me.  All I could smell was that perfume and I had to leave the stage for a minute because it overwhelmed me to the point that all I could process was the smell.  I can’t really explain it.  My sensory system seems to need to focus and all of my energies are put on that one need, so it is hard for me to type or speak or concentrate about anything else.

Lights are also a big issue.  Certain lights buzz and leave of this effect that almost is like a strobe light going on and off.  This is a real torture because the noise can sometimes drown out my own voice – at least to me – and the flashing is just plain painful to the eyes.

So, how do I deal with all these things, in addition to my plain anxiety over public speaking?

I have developed strategies that work for me but which may seem odd by neurotypical standards.  I may put on headphones and listen to music during a presentation.  Some people may think that this would drown out the presentation or the questions an audience member may ask of me.  It actually has the opposite effect… it helps me to focus in that the rhythm of one song is easy to hear through than the cacophony of a million sounds.  I also sometimes just get up and move around.  Changing my position in the environment may help alleviate some of the distractions for a short period of time.  Sometimes I just have to leave the room for a minute.

So, what is the point of this whole post?  I want to advocate a bit for myself and for other autistics who speak in public.  It is hard for us.  We may do some things that neurotypical people may find as weird and which may make them think that we are not really as smart or engaged as we really are, but there are reasons for behaviors that neurotypicals may find odd.  They serve a purpose and it’s just how we autistics process things in the environment.  If you were in my shoes, you would understand better, but I am hoping that this post and some of my other previous posts and posts yet to come will allow a peak into my world and the world of other autistics.

Paperclips and staples and big cardboard boxes…..

Image

…. these are a few of my favorite things.

Well, with the holidays coming up, I could not resist that opening.  One of the kids at my old school used to sing that song all the time with the correct lyrics.  I, personally, am not a big Sound of Music fan, but one of my therapists suggested the title and I liked it ….. whatever….

Actually, I really do like paperclips and staples quite a bit.  I have a hard time passing them by.  If I see them, I want to go over and bend them or remove them from paper, but have been trying to resist those impulses.   However, it isn’t all that bad.  I figure I could be obsessed by much worse things.

Seriously though, I am fascinated by things like staples and paperclips.  I’m sure a lot of neurotypical people think such a thing sounds really weird (then again, I think some of the things that neurotypical people are obsessed with are odd, but I won’t go into that here).

So why the fascination with paperclips and staples?    Well, they are really kind of fascinating – metal that is changeable, bendable, but in many ways immutable.  Somewhat of a paradox I would suppose.  I can bend a paper clip out of shape but it really does not change its form.  I can do with the same with a staple.  In form they are simply a long line of silver medal, but when changed, they can become very useful objects.  I can bend them out of shape and then very carefully bend them back into shape.  I can remove a staple from a piece of paper, bend it, but then bend it back to fit through the same holes it came from so it can assume its original function with only minor imperfections.

Staples and paperclips, made from metal, also reflect light in a way which is so interesting.  I walk by a paperclip or a staple and sometimes, if the light bounces off of it a certain way, I don’t see the paperclip or a staple but a dazzling light – much like the little lights of fireflies or the lights of a Christmas tree.  It is so hard to sometimes pass these by without stopping, looking and touching.  Imagine all of the light reflecting off of these tiny pieces of metal in a large stack of paper on a desk or a bulletin board with stapled notices all over it.  Sometimes, I just can’t help but stop, look and reach out to those little lights.  I want to bend them and change the way the light reflects off of them.  Sometimes I resist that urge, but sometimes the calling is too much and I just have to try to change the way that the light reflects from those tiny bits of metal.

Before you think I am odd for liking the beauty of light reflecting off of things in my environment, think about the things with which some neuro-typical people are obsessed.  Some are obsessed with money, some with clothes, some with drugs and others with accumulating as many toys as they can before they die.  Overall, I am much happier enjoying something simple like reflections of light than any of those other things.

In closing, whatever, holidays you celebrate (or celebrated), I hope that they are happy.

Rainy Days

Here in the Philadelphia region it pretty rainy the last couple of days.  I was having a hard time coming up with a topic for my next blog entry and then it hit me.  It hit me literally as I was walking into therapy the other day.  I thought I would discuss my fascination with rain.

To most people, this may seem like an odd thing to discuss or with which to be fascinated.  I often hear people talking about rainy days.  They will talk about how it makes them sleepy, how they want to stay in bed or how they feel depressed because it is so dreary.  For me, rain has the opposite effect.  It wakes me up and it excites my senses.

I sense and process sensory input different than other people.  This is something I am aware of and something that I have discussed on many occasions with my occupational therapists and friends.  Today though, I realized that I had never really talked about how my sensory system processes rain.

I have heard people say of me that I have phenomenal hearing abilities.  I have come to the conclusion that I can hear things more acutely than people with neurotypical sensory processing systems.  I can hear individuals whispering two rooms over from me at school.  I can hear my family talking when I am upstairs as if they were sitting right next to me.  I can be in the bathroom with the door closed and hear a whispered conversation all the way down the hall.  I can hear airplanes and helicopters overhead, minutes before anyone else notices them.  So just think of what rain means to me.

Rain means different sounds.  Sounds out of the ordinary of daily and sounds that are utterly fascinating.  I have heard people say that no two snowflakes are the same.  Well, I can also say that no two rain storms are the same.  They each have distinctive sound.  It is like a symphony and it is delightful.  Rain falling on a flat roof sounds different than rain falling on an angled roof.  Rain hitting windows of different thickness makes different tones.  I can almost hear the glass ringing with the sound.  The way the wind blows absolutely changes the music of the rain.  Overall, it is a wonderful sound that I wish I could share with others.

Of course then, on days that it rains, I will admit that I get overly excited.  I get worked up in anticipation of the chorus that I will hear.  I think anyone who hears what I hear would as well.  It makes you happy.  So, I ask my family and friends to bear with me on these rainy days.  I also ask for the family and friends of other individuals who process sounds differently to be aware of this and to understand that sometimes rainy days are great days.

My Experience with the Rapid Prompting Method

Recently Soma had a Rapid Prompting treatment and training session in Pennsylvania and it made me think of my experiences with the Rapid Prompting Method.

RPM opened up the world to my voice.  I learned this way of communication when I was twelve.  For twelve years, I had tried to use my voice to communicate, but my motor planning was so messed up that I could only get out a few rote sentences and phrases that I had practiced what seemed to be a million times.   Can you imagine how much fun it would be to say “may I go to the bathroom” a hundred times in therapy in ten minutes?  However, this is the only way I was able to learn to speak.  By practicing sounds, words and phrases a million times until they became automatic for me.  Nothing was simple.  Everything took so much effort, every sound had to be thought out and then consciously made by telling my tongue or lips where they were supposed to be.  It was very discouraging.  I had so much I wanted to tell people about my experiences and my thoughts on everything from what we were having for dinner to the latest Harley Davidson.  Unfortunately, my mouth, tongue and lips didn’t seem to agree with me.  They just did not want to move.

That’s when I met Soma.  She was wonderful.  I sat down with her and of course resisted at first.  I was at the point where I was angry about not being able to communicate.  I was anxious because I thought people would have no interest in hearing about what I had to say.  Soma sat down with me and very soon after we started I remember communicating about the solar system and showing people that I did have knowledge of things and was not stupid.  I had a mind full of knowledge and opinions to express. Soma had me answer questions using a letter board.  It was wonderful.  My fingers could move so much easier than my lips.  I even realized that I knew how to spell quite a few things.  It came almost naturally to me and expanded my world so much.  I was now able to communicate what I really wanted to say and not just seem like some sort of blank slate that went around saying “may I go to the bathroom” every five minutes out of a desire for human interaction.

It has been a long time since I used the Rapid Prompting Method.  Now I am pretty fluent at typing, but it all started with RPM.  I would have never learned to communicate without it and am so lucky that my family had faith in me and knew that there was something in my head that I needed to say and searched until they found what worked for me.

I have heard many people laugh at RPM and say that it is nothing.  I have heard people say that Soma is cueing kids and telling them what to say.  None of this is true.  I never was told what to say.  My finger was never forcibly put upon a letter.  It was all me and no one can take that away from me because I know it to be true.

Getting My Blog Started….

I figured that I better start using this blog for what I intended it for when I thought of the idea.

As I mentioned before, my name is Paul Kotler and I am an adult with autism.  I have what some may call substantial differences in my sensory system, in how I communicate and how my body moves.

I will expand on those throughout my blog, but will leave it at that for now.

I wasn’t able to express myself for quite some time.  You see, I have difficulty moving my mouth, tongue and lips to make speech.  I can say a phrases, words and such that I having practiced saying a million times, but I have more difficulty with new material.  Unfortunately, most of what I want to say is new material.  Going around saying “I’ll be right back” or “Go to the bathroom” just doesn’t cut it when it comes to expressing what I really want to say!

So, I learned to type.  It was a long process, but through typing I am able to see what I am saying so I can focus on creating without trying to remember what I wrote.  I am also able to express myself fully.  I can type so much more than I can say. 

I had many instances in my life when I truly wanted to engage in a conversation but could not.  I heard and understood, but could just not make my body create the plan for speech.  Some people thought I was just stupid I guess, but those that really knew me realized that there was so much more I had to say.  Now, I am going to say it, speak my mind and offer my thoughts on the diverse appearance of autism.