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.