Autism Speaks Podcast

Here is a podcast that needs to be listened to by non-speaking individuals, speech therapists, any therapists that work with non-speakers and families with non-speakers. I am featured in this podcast and I hope that you will find it helpful.


Where I Have Been

“I just finished my first year at Widener University after transferring so I could take classes on campus for the first time. It went better than expected! I am happy to say that I have a 4.0 GPA after two semesters. I made the change because I wanted a more typical college experience where I could sit in a classroom and work with peers in person. It felt like my last school didn’t think I could accomplish this and I wanted to prove myself. I knew this meant a lot of work, pressure, and stress but it was worth it.
Everyone I have worked with has been very flexible and welcoming, which really let me show what I am capable of. I put a lot of effort into not disrupting the classroom while others were listening, which was not easy being so quiet and still. I expected to be judged or misunderstood for my behaviors but everyone was accepting or too busy to care. My professors were very helpful, and one even has a son who types to communicate. 
I still do not feel very independent there, I had a lot of support to help me which makes me feel awkward but is also needed. I expected more socializing but everyone was very focused on school, so my communication style was not a problem. It is hard to quickly type during class discussion but professors made sure I had a chance to share my thoughts. When I worked in a group with others we used email to communicate and it felt good to work equally without accommodation.”

The Times are Changing

Times change and things change.  Change is hard.  After being denied the opportunity to take classes in person (rather than just online) at my current college, I have decided to take in-person classes at another local university.  This is hard. Change is hard.

I worry about the new sounds and smells and distractions.  I worry about how I can sit and stay in class without having to get up and move about.  I want to be like other students.  That is all really.  I, however, have to focus not only on the course information but also on regulating myself and my body.  It’s hard when I have to do that.
I do have plenty of support and I am grateful, but in the end I realize that I have to step up to the expectations people have of me.  I share these expectations and want to be successful.
This is where I stand now and it seems to be where I always stand.  I am pulled between a desire to be more independent and the comfort of knowing another person is there to watch out for me when I need it.  I want the independence, but I also fear it. 
I fear how I will deal with sitting in a classroom with my sensory issues.  I fear that I will not set a good example for future persons like myself who might wish to attend this university in the future.
These things are what I am trying to deal with right now and are the things that make me worry.  Well, this and the fact that I am trying to be more independent. I think I have to find a happy medium between being completely independent and accepting help when I need it.   Being completely independent is a hard thing, but I have to remember that even while I think I am out there alone, I have a wonderful support team including my family, friends, therapists and teachers.

Listening to Music in a Different Way

I would like to spend some time talking about music.  Almost everyone I know has a type of music they like.  Music, for me, is either a cacophony of tones that make no sense or it is precise and exact in tones that meld in my head to calm or excite.

Sometimes this can be just a single portion of a song, perhaps 5 seconds, but it is a sound or combination of sounds that is balanced and is wonderful to listen to.  It is something that at times I crave desperately, and I will listen to portions of a song over and over many times to keep hearing those tones that I crave.

To others this can look strange but it is an example of how differently we can experience the world.  It is very common that people ask me to listen to music the way they do.  This ignores that we might have different wants or needs when we are listening to music.  For example, to certain individuals the lyrics or entire song can be meaningful.  To me, sounds are meaningful.   The way a vocalist’s voice melds with an instrument, a tone an instrument makes in just a few seconds of the song are sometimes more meaningful to me in many different ways than the entire song.

I have to wonder if there are others that feel the same?  Music is wonderful, but it is wonderful in a different sort of way for me than a typical individual.

I wonder how others might feel about this?  Are there particular parts of songs you want to listen to over and over again just because you like the way that one particular part sounds?  Do you listen to the whole song and then re-listen to it over and over again?  How do our sensory needs differ I wonder?

Saying and Hearing… Words are Interesting

I often repeat words to myself out loud.  These words are variable like “monopoly,” “swim,” and “airport.”  I was recently asked about this at a meeting.  Basically, while I do enjoy going to the airport and other things because of the sounds, I also like hearing the sounds of specific words when I say them out loud.

I have been asked the reason behind this and I will try to explain.  However, it is hard to do so in many ways.  I hear myself speak differently at different times.  I can hear tones in different words that sometimes are very interesting to me.  However, if I hear another person say the same word, there is no interest.

Some tones are melodic and others have much dissonance to them.  I may keep saying a sound or listening to a particular part of a song because it has a tone in it that I like to hear.  I do wonder if it is my body telling me I need to hear this sound to help adjust some sensory issue my body is working out or if it just because I like it at that particular moment.  I don’t know the answer to that, but I do know that sometimes when I say words I get more excited and at other moments I get more relaxed.

So, take a minute and think about it?  Do some words just sound more interesting to you?  Do some sounds seem to “roll of the tongue” as the saying goes?  Think of how this might be magnified in someone with sensory differences.  I personally love the way some of the words sound and enjoy saying them.  It hurts no one and it calms me.

Back Into a Routine

“Getting back into a routine”  This is something I have heard a great deal lately.  Is there a greater shift in our lives than in the autumn when returning to school and work after the summer break?  I have a great deal of difficulty with change and  for a person like me each little difference is massive.  By now, most people are adjusted to the change, but for me it is still going on and it is still at its extreme.

Returning to school is exciting or anxiety producing for most people but for me it is a sensory barrage. Environments all change and each has new smells, lights, people and temperatures.  Trees are louder in the wind.  The heater smells very different from air conditioning.  People wear different fabrics.  The smallest change can be distracting or overwhelming.

I know that I will eventually settle in, but paper clips, staples, and everything else like that are all major players in the game for me at this time.  They take a predominant role because I would rather focus on those than on the anxiety of change.  I think that this is what happens every year – dealing with the anxiety of change.  Right now I have, just like many of my readers probably have, many changes going on.  I am starting new classes, new goals in therapy, changes in my routine and even changes in my living situation to a certain extent.  All of this can seem overwhelming to me at times and then, as I said before, I need to get used to new sounds, new smells and new ways of dealing with those things.

The summer was great, but busy.  Now it is time to get back into focus.

Keeping Busy

It has been a busy couple of months and I have neglected my blog a bit more than I intended to.

From February to July this year I was lucky enough to participate in a tech development contest organized by AT&T and NYU. The goal was to invite people to create new tech solutions for people with disabilities.

i was asked to provide feedback on each idea along with a diverse panel of people with and without disabilities. With me were three amazing advocates for accessability Xian Horn, Gus Chalkias, and Jason DaSilva.  All of us have a different background and different challenges. we all brought our unique perspectives to the process.

Our role was to represent the end user and ask questions that might not occur to people without disabilities. hopefully this will lead to products that can help people become or remain independent.  It was a wonderful experience that I was privileged enough with which to be involved.

Having said that, I am hoping that my readers check out the contest page and the wonderful videos about the exemplars so they can see what I have been up to.  I hope to get back on a regular schedule now of  posting regular blog entries and have some great ideas, so check back soon.

Piece on

I recently wrote an op-ed piece for 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 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.