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.

4 thoughts on “Teamwork and Independence – we all need supports.

  1. Paul, I really enjoy reading your blog and seeing things from your perspective. You’re so right in that even when achieving independence, everyone needs a support network. Seeing the kids day in and day out at school, you do see their amazing talents, and everybody excels at something. I’m amazed everyday by how our kids do things that doctors may have told their parents they would never achieve when they were younger. But, of course, we know they are fully capable and will do anything they set their mind to. It’s so cool you have this blog here, so that other people can read and gain insight into how you see the world. I love reading your blogs, keep writing! 🙂

  2. For someone who works with an organization that provides instruction and services for children with disabling speech disorders, this blog entry was a real eye opener. Thank you, Paul, for helping me understand the world from YOUR PERSPECTIVE. It’s sad to hear that people have so many misconceptions that create obstacles to your success. But it’s encouraging to see how your strength, determination and communication of these amazing insights will provide the leadership to fight the good battle for you and others who share these challenges!

  3. I read your blog several days ago. I not only enjoy reading your blog, but your writing stirs a realization within, that sometimes, without purpose, gets dimmed. To know something in your head is one thing, but to feel it in your heart is another.

    Last night I sat next to a parent that I happen to know while I was at a “back to school night” for one of my kids. I coached this woman’s oldest daughter last year in volleyball, and we currently car pull this season for our daughter’s volleyball practices. But last night I learned that one of her children has Autism. I never knew it. She made a comment that he was able to say one or two words, but that he would not “go very far”. I just paused, and I felt sad. I thought to myself…she’s looking from the outside in….not from the inside out. It is so hard to know what is locked inside a person when there may be a roadblock preventing self expression. She seems to be a wonderful person. But after our conversation, I just got the feeling that maybe she would like to read you blog. So I ask permission to share it with her??

    We need your blogs….to help remind people to look from the inside out. It is not always something that happens on purpose….sometimes people just don’t realize. Please don’t stop writing.


  4. Hi Paul,

    I love your blog! Thank you so much for taking the time to share your thoughts. I think it is very important for voices like yours to be heard.

    Btw, it’s raining here in Melbourne (Australia). I also love the sound of rain:-)



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