Piece on Wired.com

I recently wrote an op-ed piece for Wired.com about technology and people with disabilities.  I’m sharing the link in case any one is interested:

Even Tiny Updates to Tech Can Be Obstacles for the Disabled

The NYU and AT&T Hack-a-thon and #ConnectAbility Challenge

Here is a video I was a part of to promote a contest to develop new and better tech for people with disabilities. 

Paul Kotler & the #ConnectAbility Challenge

Check it out and I’ll post later about what new exciting tools are created.

Also take a minute to check out the videos produced with my fellow exemplars:  

NYU/AT&T #ConnectAbility Challenge

Thanks everyone!

The Noise of the City

I was recently back in New York City presenting at NYU.  I really enjoy my trips up to NYC.  Greenwich Village is very exciting.  Compared to where I live, there is so much traffic and vehicles to look at.  Honestly, many people may find the crowds and traffic stressful.  For me, however, I find that it lessens my anxiety because I can focus my mind on something that really interests me – noises, cars, trucks and cabs.  Sometimes I find that with focusing on those things, I can even forget about other things that are hard for me in the city because of my sensory issues.  I honestly really like the city  because there is so much automation. There are mechanisms moving everywhere moving and I like seeing and hearing that.  Different cars can be picked out by the way the engines run.  I can know what car will be coming before I see it and then I see it and it is fun to know I picked it out and was right.  For example cabs sound different that trucks and some big cars sound different than smaller cars.  I can sometimes even hear a bike coming.  All of the mechanical noises help to keep me focused and I don’t care about the crowds because of it.

I often fell anxious before presentations and just walking through the city is calming.  I  find that I can get lost in the crowd and no one notices that I move different or act different because there are so many people around and that is sort of nice every so often.  Plus, the mechanical noise is increased so much that I cannot pick out individuals so it is much less likely to take away my attention from trying to listen to what they may say about me and that is relaxing.  In many ways this is like some airports.  So many people doing things in a hurry and running and trying to get somewhere that they do not notice me.

That is one of my concerns.  I know because of my motor plans that I have movements that seem a bit awkward or I may do things that seem a bit odd to others to satisfy a sensory need and because of this, I feel like I am being stared at and try to listen to see if I can hear what others may be saying about me.  For example, in hockey I feel like all eyes are on me.  I don’t like that and it gets me very stressed even though I have fun skating.  I feel like everyone is watching the different ways I move around so I want to move in a way that looks right.  Just skating around and not getting in the middle of things where I may look like I move differently.

So, sometimes it is nice to get lost in a crowd.  It can be relaxing.  However, I think it is also important for others to realize that there are others out there who may move differently or who may do things that seem odd to a neurotypical person.  Understanding and empathy needs to increase and that is one of my goals when writing this blog… to let people know and make them aware of us.

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.