Patrick Kelty is a 27-year-old adult with an autism spectrum disorder whose life was changed by multiple forms of assistive technology. From that first elementary school reading tool, his life has immensely improved.
In his elementary years, PK (as we call him) benefitted from the symbolic reading intervention I mentioned, but we also noticed that anytime we reduced auditory input and used symbols or visual instructions, he was more settled and more able to perform. He loved playing games on the house computer. And we learned that if he spoke what he knew, he was more able to demonstrate his competency. His language was not well developed, but with interrogatory prompts, he could, with patience, communicate much more than people presumed he could possibly know. Visual schedules and reminder prompt strategies helped him have a more predictable work at school and home. He was also diagnosed with low muscle tone that could be seen in flat, non-muscular hands that tired and fatigued quickly. His torso struggled to support him in a strong seating posture, which is necessary for writing tasks. All of this increased his frustration so dictation was used in greater intensity and his legibility remained far below grade level.
Also, he developed seizures in the 3rd grade from the open classroom setting that he was in. These are classrooms with no walls and up to 100 students in a very large, acoustically challenging room. We learned of Irlen Lenses that are colored lenses that filter out lighting that makes visual distortions disappear. This was a transformational intervention. This assistive technology prevented him from needing medication, the seizures stopped immediately, and he no longer required pull out for sensory work. This allowed for more time on task in class, and a more focused effort from him.
Upon starting middle school, the class settings were too toxic for him to remain. Bullying and constant struggles to get what he needed became too burdensome so he was placed in a private school with small classes and a focus on assistive technology. There he learned to keyboard/touch type with high accuracy and ultimately, higher and higher speed with games designed to reward him for these skills. But due to the unreasonable delays he had endured in trialing assistive technology, the fluency he needed to transition from simple keyboarding tasks to fluid, effortless transfer of knowledge to the keyboard was still lagging. He continued to use pencil to paper for simple, one-work tasks, circling responses and math tasks. There, the school introduced reading software, but it wasn’t Kurzweil yet (www.kurzweiledu.com). Soon, he was performing at grade level.
It’s also important that I mention the use of video games. PK used simple games like Lego Star Wars to learn persistence, patience, determination and to pace himself between pleasure-seeking activities and prioritizing academics. Also, the Wilson tutor, Miss Tiffany, used learning games during break times in his remediation so every moment of the remediation protocol included the opportunity to read and learn.
After a difficult battle, he was provided strong supports in high school. He received Wilson Reading program that allowed him to learn the decoding and phonetic foundation that he had been denied during early elementary, due to his autism, sensory assault and simply put, the darkness surrounding the early days of understanding autism in the early 90’s. He used Wilson intervention for two years and finally learned to decode the symbols he loved so well.
The high school used Kurzweil more often, but still, the temptation to read aloud to him was so must easier, the teachers found the Kurzweil to be a bit annoying. So while he was getting the work read aloud, he was still person dependent for most things. One regret I do have is that we never wrote goals to learn to read cursive. His signature is still printed and this is not a problem, but not being able to read cursive continues to be a bit of a barrier.
But the use of a note taker, 1 hour a day of 1-2-1 support, dictation to scribe for written work and the strong commitment of his teachers and PK’s own work ethic resulted in an excellent outcome. He was so academically successful, he got to manage the ice hockey team and enjoy many of the same extracurricular joys as other students.
PK is now at Marshall. He tried another learning disability specific program in Florida, but they were overwhelmed with managing entire classes of students with disabilities, and did not find in their hearts to invest in PK’s success. But Marshall’s program was quite individualized, invested, committed, and flexible about working collaboratively with us to provide his assistive technology needs and the other supports to help him achieve.
Vocational Rehabilitation has provided PK with two different computers over his post-secondary career, his Irlen lenses and the cost of a private tutor. He’s received two Kurzweil systems (one and then an update). They also provide his tuition costs and fees for the Marshall College Autism Program.
At Marshall, because of the College Program, his Kurzweil has been provided with 100% consistency, resulting in constant and stable access to the written curriculum, with complete independence. His tests are provided partially with Kurzweil reading and sometimes, depending on content, with read aloud. To facilitate needed movement, he dictates his test answers utilizing separate testing accommodations. He uses a color-coded visual schedule that is provided every Monday. While many interventions have come and gone, the Irlen Lenses are his one constant. They allow access to all learning environments, ease of learning and sensory regulation. I also believe they have diminished the need for prescribed medications. Of course, each person’s benefit is unique and not everyone will enjoy such an outcome, but this has been our experience.
Assistive technology has helped PK live more independently, too. After two years in the dorm, he now lives in his own off-campus apartment. He has important details posted on a whiteboard (emergency/family contacts, the code for the laundry room, police, and fire). He has an old-fashioned calendar that I fill in with all of the important dates for his term. We write out his rent checks and he uses the ATM to report his balance, to know when to sign them and drop them by the rental office. This is all “assistive technology” that even non-disabled persons use!
Very low-tech support happens with kitchen equipment, the shower and the water emergency shut off valve—red nail polish marks the settings so he is protected from burning himself or being unable to respond in a crisis. He uses his cell phone to check the weather to know what to wear, to text clarifying questions for independent living (how do I put a Band-Aid on my toe?), and in September, to address a lock out (only his second in three years!).
The greatest accomplishment for me is that now, because of the consistency of the access to Kurzweil, PK is reading independently. They are high interest, low reader books (chapter books) but he reads from the time he wakes until he retires and this was on my “mommy wish list” for as long as I could remember. I live to read, and I so wanted him to have that love of reading. And now he does!
As you can see, the use of assistive technology has been ongoing and of greater and greater value over his life. Going forward, I believe technology will allow him to be employed and to work in the community. His mastery of technology and the ability to read maps and bus schedules will lead to more independence and community navigation. Every moment of his life benefits from the use of both use of both simply and complex assistive technologies help with school and home. He has achieved the level of independence we had most envisioned in our dreams for him, not by outgrowing technology, but by maximizing technology.
That is the most important message I can convey. Maximizing assistive technology options reduces physical and cognitive fatigue, so a paradigm shift needs to happen for students requiring these supports. Assistive technology needs to be provided earlier, with more consistency from teachers who are highly skilled at training students to take the greatest advantage of these benefits. I am deeply saddened to think about all of the very capable students who are held back or completely denied the ability to show their intelligence because of the lack of assistive technology. And deeply grateful that some angels did see his intellect and his dedication to learning, and were willing to put forth the effort to see him succeed.
Patrick Kelty is a senior at Marshall University working toward a Regent’s Bachelor’s degree in history and is expected to graduate in May of 2017. He has shared his written work about his experience at Marshall University at the Autism Society of America National Conference in 2014 and 2015, and has written about his love of Marshall in the book, “College for Students with Disabilities: WE DO BELONG,” edited by Dr. Stephen Shore and Dr. Pavan John Antony of Adelphi University.
Dena Gassner is a wife, mother, grandmother, social worker, PhD student, and autistic attending Adelphi University. She utilizes lighting accommodations, a Smart Pen, Irlen Lenses and extended time in her PhD studies. She has been published in many autism publications including a shared post in the same book as her son, “College for Students with Disabilities: WE DO BELONG,” sharing a very different story of college.
She is a national board member for GRASP and the Arc US and an advisory board member for the Autism Society. In 2014, she spoke on issues related to autistic girls/women at the UN in Geneva and recently consulted to the autism researchers at Cambridge University for Dr. Simon Baron-Cohen’s team. She seeks to live a fully authentic life not by overcoming autism but by wholly embracing and maximizing her abilities including her autism. For more information, visit www.denagassner.com or email firstname.lastname@example.org.