As we enter the beginning of the school year, I want to go over my 20...
Episode #090: The Autism Puzzle Piece- A Talk With Thomas McKean
hether you’re a parent, professional, or an autistic individual, you have most likely seen the Autism Puzzle Piece. Like myself, you might even have a sticker or magnet on display as a symbol of your support for the community. But what is the real symbolism behind it? In this episode, I have the honor to talk with Thomas McKean, an autistic adult who had an integral part in the development of this icon.
Prior to Thomas’s collaboration in the creation of today’s autism puzzle piece, the original icon developed in 1963 was a puzzle piece with a child crying. This symbol represented the hopelessness, sadness, and confusion for children with autism at the time. In the 1960s there was little to no research, ethical treatment, or support for autism families.
When Thomas and his colleagues developed the new symbol in 1999 they knew the view and information about autism had changed a lot. There was much more hope and a positive shift had taken place in the community. They wanted to embody that. The autism symbol as we know it today is represented by a puzzle piece reflecting the information we are still missing and learning as we add new “pieces”, it features a multi-colored design to represent diversity in the community.
“If you’ve met one person with autism, you’ve met one person with autism.” – Dr. Stephen Shore
This representation of diversity is so crucial to Thomas’ advice when it comes to division in the field. He says, the difference is not bad, in fact, it’s necessary. Because each individual with autism is so different it’s important for professionals to see things differently and really work toward an individual approach. No professional is going to have all the answers for every autistic person, and when we understand that, we can peacefully collaborate.
Thomas says one of his most asked questions is how to help parents who are just venturing into their autism journey with their child. For that, he has 4 steps.
- Read and Learn
- Find Support
- Attend conferences, presentations, and network in the community.
- Start OT and receive evaluation for sensory processing.
From there you will learn the pieces of how to support, treat, and help your child.
This was such an enlightening talk on the true vision and meaning of such an important icon in our community. I hope you found it just as interesting as I did!
Thomas was born in the mid-sixties at University Hospital on the campus of the Ohio State University. He attended pre-school and was in regular education until the second half of the third grade when he was moved to special ed. He stayed there until the sixth grade. At the end of the seventh grade, Thomas was diagnosed with autism and placed in a psychiatric facility, as was the custom at the time. He entered in the Summer of 1980 and left in the Autumn of 1983. Following this, he moved to Urbana, Illinois, for a time to attend Parkland College, where he studied computer science. While he was there, Thomas also received his GED and graduated high school a year early. Returning home, Thomas worked for the Medicare division of Nationwide Insurance for three years, from 1986 to 1989. His duties were to process Medicare claims for the states of Ohio and West Virginia. He then attended Columbus State Community College for a time, studying Mental Health and Journalism.
In 1992, Thomas was asked to run for office on the national board of directors of the Autism Society of America, at that time the largest autism organization in the world. He reluctantly agreed and eventually served two non-consecutive terms (a’la Grover Cleveland) on the board, 1992-1994 and 1997-2000. He currently serves on the board of directors of the Autism Society of Ohio. During this time he also traveled extensively throughout the USA and Canada, speaking at conferences and doing private consulting for families and school systems in regard to children with autism. Thomas is one of the four original advocates along with Sean Barron, Donna Williams, and Temple Grandin. The four of them, working both together and separately, were not only a big part of originally creating autism awareness, they also increased that awareness and the understanding of the autistic disorder around the globe. During his time on the board, Thomas was involved in martial arts. He trained in TaeKwon-Do under Grand Master Joon Pyo Choi and he made it over halfway to a black belt before illness forced him to quit.
Thomas has written and published two books. The first, Soon Will Come the Light, is biographical in nature and covers a lot of behavior and neuro-sensory information on the topic of autism. This book was released in 1994. It took a national award for literary excellence that year and remains in print all these years later. The second book, Light on the Horizon (now out of print) is more of a “how-to” kind of book in dealing with various aspects of autism. In early 1997, Thomas was presented with a Title of Honor for his work in the advocacy field.
Shortly after, he was additionally diagnosed with severe fibromyalgia, causing him to step down from his travels and end his martial arts training. (Twenty years later this was found to be a misdiagnosis. Thomas was rediagnosed in 2017 with a progressive neurological disorder that has severely weakened his muscles and placed him in a wheelchair.) Also in 1997, Thomas started building a website that has since grown to include far more than just his published autism articles, as he had originally planned. In late 1999, Thomas moved from Columbus to the much smaller town of Bedford, VA. He lived at the base of the beautiful Peaks of Otter mountain range and spent a lot of time up in the Blue Ridge.
In October of 2001, just after 9/11, Thomas had the opportunity to appear as a guest on the Oprah Winfrey Show. Oprah promoted Soon Will Come the Light and Thomas soon found that everything that has been said of Oprah and book sales is true. Shortly before Oprah, Thomas was invited to speak on the Mall in Washington where he spoke to thousands of people at an autism awareness rally. Following this, he attended a Senate hearing on autism and vaccines. He did not testify. Thomas has had an interesting life. As stated, Thomas has traveled extensively. He has spoken at numerous local, state, regional, national, and even international conferences. He has addressed the members of the Senate and Congress regarding disability issues, funding, and awareness. He has done private consulting around the USA and Canada that has improved the lives of many children and adults diagnosed with autistic disorder at homes, in schools, and in residential facilities. He has attended several IEP meetings as a consultant. He has appeared not only on Oprah but also on NPR and on several television newscasts and in newspapers across the United States and Canada.
Today, Thomas has returned home to Hilliard, OH where he lives in somewhat of a cave with his sister, her husband, and a purebred Pomeranian who, like Thomas, has been previously abused and abandoned. Thomas is now spending quite a bit of time in a sporty custom-built titanium wheelchair while trying to get healthy again. He is still writing (sometimes things other than autism) and you will still see him at the occasional autism conference.
- The Symbolism behind the Autism Puzzle Piece.
- Advice for professionals on resolving division in the autism community.
- 4 steps for parents entering the autism journey with their child.
Mentioned In This Episode
—Thomas A. McKean
—Thomas A. McKean | Facebook
—Advanced Language Learner – Sign Up Today – ABA Speech
—Register for the Pyramid Educational Consultant’s Third Annual FUNctional Communication Conference on October 17th & 18th
—ABA Speech: Home
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