When I stop to think about it, I am startled by the personal and professional transformation I have undergone in the past several years. Working with the wonderfully incredible, sensitive, and loving young people on the autism spectrum has taught me a wealth of knowledge about being of service to others, while also giving greater insight into my own life. None of this may have been possible if I was not able to reconstruct and rehabilitate what I thought it meant to work with these children and young adults.

Starting out in a behavioral health field is an intimidating and sometimes overwhelming experience. Because of this, I looked to the professionals in the autism field for help in understanding the kids that I so greatly adored but was unable to yet fully grasp. While these experiences were beneficial in many ways, I also came across many unpleasant and compromised methods, at least to my own judgment.

“You have to destroy him so that he knows who is in charge!”

This was boasted by the autism specialist who was training new staff in the classroom after grabbing a child who was “too excited,” screaming at him, and forcing him into a chair.

“He is as close to a primordial creature as you will come across.”

Another comment made by a professional when I was introducing a new staff member to the child he would be working with.

“He doesn’t communicate. There’s no intellect here.”

These are the actual thoughts of someone who had worked with a nonverbal student for several years.

These comments were all said to me with the utmost sincerity and by those who thought they were doing everything possible to help children on the autism spectrum. Fortunately, I was able to find the true experts in the field to guide me and help me understand autism: those living with it.

My preconceived notions first started to fade away as I met the person who would help me put into motion a real transformation in my work and personal journey: William Stillman. Bill helps others understand autism from a first person account through his work as a consultant, author, and as someone living with Asperger’s Syndome. He began working with my agency, as a consultant, in conjunction with Temple University to develop a curriculum for wraparound services serving those with autism that focuses on the individual first. Bill was able to articulate the experience of autism from the inside-out. I was finally able to understand many things such as the fact that self-soothing behaviors serve not only a purpose, but are actually a very important form of coping with a world that many times seems to be at war with one’s senses. He helped me to start looking past labels to the true intellect and person that lies beneath a body that does not always respond in a manner that is reliable. But this was only the beginning.

Bill introduced me to a group of individuals who have completely changed the way I look at the world and I believe would do so for anyone who spent time in their company. These individuals meet together to discuss advocacy, education, and in general opening the minds of everyone around them. While there are probably many autism support groups with similar missions, this group is different in that all its members communicate through the use of Alternative and Augmentative Communication (AAC) systems. Spending time with these individuals has been both educational and inspirational. They have fought hard to overcome prejudice and stereotypes, while constantly showing love and understanding to the world which has not yet learned to understand them.

I am fortunate enough to have the opportunity to train new staff who begin at our agency by giving a three day inside-out perspective of the autism experience. As I speak to new staff, many of whom have never worked with an individual on the spectrum, I am assisted by Will Turnbull, a nonverbal adult with autism, who communicates through facilitated communication. Therefore, where people may have once looked upon him as mentally retarded simply because of his appearance and/or diagnosis, he is now able to educate and break down stereotypes of those who listen to him. This seems to be the best way for others to learn about what autism really is about, from someone living the experience.

These are just a few of the wonderful people that have assisted me in my journey of a more pure understanding of those with different ways of being. Hopefully we all continue to examine our perceptions of others and learn from those who have much to offer, but oftentimes no voice. Learning to listen in ways other than with just one’s ears is an essential step to understanding the communication of those who have difficulties in this area. Perhaps we should all start listening more with our hearts and minds to truly be of service to others.

© Matthew Gromis, 2007

Matthew works in the behavioral health field attempting to help those with different ways of being find their voice and the right to advocate for themselves while teaching staff to understand these individuals from a person first perspective. He may be contacted at matthewgromis@hotmail.com.
 

©2007, William Stillman (www.williamstillman.com)