This guest post is by Autism Speaks staffer Kerry Magro. Kerry, an adult who has autism, is a rising senior at Seton Hall University, majoring in Sports Management. He started an Autism Speaks U Chapter: Student Disability Awareness on campus to help spread awareness and raise funds for those affected by autism. Autism Speaks U is a program designed for college students who host awareness, advocacy and fundraising events, while supporting their local autism communities.
In 2008, Autism Speaks U was founded. The same year, I founded an undergraduate, student-run organization at Seton Hall University called, Student Disability Awareness (SDA). It is an organization focused on spreading disability awareness for both temporary and permanent disabilities. This fall, my organization is collaborating with Autism Speaks U to become an official Autism Speaks U Seton Hall Chapter. During the next few months, our mission is to promote and spread awareness for Autism Speaks U, while hoping to become another student certified organization at Seton Hall during spring of 2011.
At Seton Hall, disability awareness is something that is rarely promoted or discussed. 350 students are registered with a disability on our campus, along with another 650+ others who are not. We are one of the largest minorities at Seton Hall (this should not be a surprise considering people with disabilities in general are the largest minority in the world). SDA was the first disability awareness organization ever created at Seton Hall and with Autism Speaks U, we will have a second. With this organization, we move a step closer to giving disability awareness a voice, not just through Seton Hall, but all of New Jersey with our community run events throughout the state. Through SDA, we have several events set up for Autism Speaks U. The main one is a Seton Hall organized, Walk Now for Autism Speaks team called “SHU Make a Difference.” They will participate in The Northern New Jersey Walk in Cranford on October 17th. We are currently the 5th highest fundraising team for the walk and are still looking for donations (if interested in donating, please check out my fundraising page or our team page).
Along with the walk, we are already planning informational seminars about autism, along with monthly roundtable discussions on the subject. There is also an event called “Coming Out: Autism in College,” where we encourage both disabled and non disabled students alike to come out and spread the message that it’s okay to be just the way they are. I will be reading an excerpt from my manuscript, “Autism: The College Spectrum,” from one of my earlier blog posts. I will also be speaking about my progression as someone on the autism spectrum. Nothing about us, without us is our message throughout this event. We will be promoting Autism Speaks U to encourage student involvement and have flyers, brochures, and an information table set up for this week. We also have a faculty of supporters spreading our organization through the class rooms.
As a college senior, I know this is the last hoorah. It’s going to be a great deal of work for the SDA members and me. My mission however has made me hungry, which is to make sure I push what needs to be done to make sure that these two organizations can stand on their own once I graduate. The struggles that I’ve endured through college have made me a stronger person. Ideally, I want to make sure the future of students, disabled or not, can have someplace to feel safe, and to understand that it’s ok, once again, to be just who you are.
Let’s get to work….
If you are involved with Autism Speaks U on your campus and would like your story to be featured on the Autism Speaks blog, please send it to AutismSpeaksU@autismspeaks.org. Autism Speaks reserves the right to edit contributions for space, style and content. Because of the volume of submissions, not all can be published on the site.
Editor’s note: On August 2, 2010, Dr. O. Ivar Lovaas passed away. We sincerely thank Dr. Lovaas for all of his contributions to the autism community.
In 1981, with the publication of Dr. Lovaas’ pioneering work, Teaching Developmentally Disabled Children (popularly known as “The ME Book”), the landscape of the world of autism was quite different than it is today. In 1981, the prevalence of autism in the general population was reported to be only 4 in 10,000, hardly the 1 in 100 world epidemic that autism represents today. While considered a relative rarity at the time, a diagnosis of autism in the 1960’s and 1970’s was considered by most to be the beginning of a countdown to institutional care. To add insult to injury, Bruno Bettelheim and others were disseminating and perpetuating the notion that autism was caused by cold and unfeeling “refrigerator mothers” and other forms of inadequate parenting. For much of the latter part of the last century, families of children with autism had little, if anything, to hope for.
Dr. Lovaas, who had already been working with children with autism for decades, knew better. Dr. Lovaas knew instinctively that poor parenting was not to blame. However, finding the root cause of autism was not Dr. Lovaas’ chosen mission. Instead, Dr. Lovaas focused his energy and attention on developing effective teaching strategies. Dr. Lovaas believed that children with autism could “learn to learn.” Back in the day, this was considered by many to be an unreachable star.
Just as Thomas Edison’s numerous lightbulb failures paved the way for Edison’s ultimate success, Dr. Lovaas painstakingly identified the “serious mistakes” that he and his colleagues at UCLA had made over the course of two decades in attempting to teach children with autism and other severe developmental disabilities. Dr. Lovaas knew that the first step to finding an effective, core intervention would be to identify and eliminate the various approaches and strategies that had been tried, but which were demonstrably ineffective. Dr. Lovaas then worked tirelessly to break down the large and general problem of “disability” into manageable and separate behavioral units. Through years of trials, Dr. Lovaas further refined his behavior modification techniques and approaches. Over time, Dr. Lovaas’ work in the field became recognized to the point that for many, “Lovaas” became synonomous with the term “Applied Behavior Analysis.”
During the 1980’s, Dr. Lovaas and his colleagues at the UCLA Young Autism Project further refined their behavioral approaches, and they were fortunate enough to receive an important grant from the NIH allowing a most unusual and intensive approach that had never before been attempted—a forty hour per week one-to-one teaching program. In 1987, the results of Dr. Lovaas’ study, entitled Behavioral Treatment and Normal Educational and Intellectual Functioning in Young Autistic Children, were published in the Journal of Consulting and Clinical Psychology, a respected peer review journal.
While there certainly was some controversy over the precise “design” of Dr. Lovaas’ study, there had never before been a study reporting such a favorable outcome—many of the students who had been receiving a 40 hour per week intervention program for approximately 2-3 years had recovered function to the point that they were considered virtually indistinguishable from their typically developing peers. A 1993 follow-up study appearing in the American Journal on Mental Retardation confirmed that some six years later, all but one of the children in the “best outcome” group had retained the gains reported in the 1987 study. In 1998, the Surgeon General’s Report on Autism referred to Dr. Lovaas’ 1987 study as a “well designed study” that “….demonstrated the efficacy of applied behavioral methods [ABA] in reducing inappropriate behavior and in increasing communication.” Vindication!
In 2002, Dr. Lovaas asked me to write a chapter on ABA litigation for his then upcoming update to The ME Book, Teaching Individuals With Developmental Delays (Pro-Ed). Dr. Lovaas told me in the charming Norwegian accent that he never seemed to lose despite living in this country for many decades that his greatest wish was that every parent, whether residing in California, New York or Alaska, would have access to effective autism treatments. Dr. Lovaas regularly spoke of the need for insurance reform, as he knew full well the devastating impact autism can have upon the family. The dedication appearing in Dr. Lovaas’ latest book speaks volumes as to his empathy and compassion for the family: “This manual is dedicated to all parents of children with developmental delays in recognition of the heavy burdens they carry, and the models they provide for all parents to follow.”
I last sat with Dr. Lovaas and his lovely wife, Nina, at the Autism Speaks’ benefit concert in Los Angeles, headlined by Paul Simon and Jerry Seinfeld. Dr. Lovaas was truly pleased to see how far public awareness of autism had come. He also has a special appreciation for Jerry Seinfeld’s jokes, ostensibly because so many of them are based on the nuances of human behavior.
Dr. Lovaas’ pioneering work has not only helped, but has profoundly changed the lives and futures of thousands of affected children and their families. Dr. Lovaas’ work continues to have a profound impact on the professional development of today’s autism professionals. Perhaps most importantly, where once there was darkness, Dr. Lovaas brought light and genuine hope.
The autism community clearly has lost a giant.
This guest post is by Gary Mayerson. He serves on the board of Autism Speaks and is the founder of Mayerson & Associates, the first law firm in the nation dedicated to representing children and adolescents with autism spectrum disorders.
This guest post is by Autism Speaks staffer Kerry Magro. Kerry, an adult who has autism, is a rising senior at Seton Hall University, majoring in Sports Management. He started an Autism Speaks U Chapter: Student Disability Awareness on campus to help spread awareness and raise funds for those affected by autism. Autism Speaks U is a program designed for college students who host awareness, advocacy and fundraising events. It is an exciting and collaborative way for students to raise funds and awareness for Autism Speaks, while supporting their local autism communities.
Some of the biggest fears I’ve ever had in my life are the fear of the unexpected, fear of change, and the fear that I would be looked at differently. This all came into focus my first year of college at Seton Hall University. Before college, I had only told a few people that I was on the spectrum. This was mainly because when I was younger, when my parents would tell me I was autistic, I would have no idea what that meant or how that affected me. I only knew one thing – I was not artistic.
In both grammar school and high school, I never felt the need to tell anyone either since I went to a private school, Community Lower/Community High School in Teaneck, N.J., for students with learning disabilities. There was a certain comfort that I enjoyed, knowing that I was with others I could relate to. We all had something with some letters so it wasn’t a big deal.
When college came along, I didn’t know what to expect. When I was deciding on what college to go to, I chose the college that best matched my future career goals (sports management), not the school that would be best match my disability (a school with more accommodations). While well-meaning, the idea of me surviving at a post-secondary program which wasn’t the recommended choice by my high school academic advisors. They saw it as a huge mistake, which they thought would hurt me in the long run. I honestly could care less, looking back.
This brings me to the day I came out about my disability publicly. It was during one of my freshman classes in “Oral Communication.” My professor had told me to pick a topic that I knew a lot about to speak about for 10 to 15 minutes. The obvious choice in my mind was to pick autism, considering my public speaking skills were still very limited and I thought it would be an easy subject to talk about because I know a lot about it. The theme of the presentation was going to be “how autism impacts playing basketball while highlighting the story of Jason McElwain’s historic game, which illustrates how someone with autism can overcome the odds.”
For those who don’t know Jason McElwain, he was the high school basketball team water boy, who has autism, turned basketball star. He didn’t play one game in high school, until the last game of his senior year when he scored six three-pointers in a matter of minutes. This game became one of the bigger underdog stories in recent memory. So now I was set. I would speak about him for five minutes, present a general overview of autism for another five minutes and than close by telling them that I had autism.
The day of the presentation, everything went according to plan. I had spoken about all of my main points; however, when it came down to telling my fellow peers I had autism in my closing statement … I froze. The thoughts that were running through my head were endless. What happens if they treat me differently? What happens if no one wants to have anything to do with someone who is different? Finally, after I started speaking again I reminded myself that the one fear, the one fear that I never want to let take the better of me is the fear of being who I am. Being me had taken me to a post-secondary education and being me was the only way I was going to get through this presentation.
At the end, my closing statement of my presentation was: “Autism can not define who you are, only you can define autism. I have autism so I know especially, and I ended up the captain of my high school basketball team so I can relate to this message.” As soon as this was said, I was applauded and given a standing ovation by both my professor and my peers. This was a wonderful feeling.
After the speech, I was very open to all my peers about being on the spectrum and have been since this day. Many people, both with autism and not, ask me if telling people I am on the spectrum was a mistake, and truth be told it has only made me stronger. Granted, things are not perfect. I am still judged and looked at by countless people as broken. I don’t dislike these people, however I pity them. People are still very unaware, sometimes ignorant and sometimes afraid of what might be different. During my time at Seton Hall, I have founded an organization to spread disability awareness called Student Disability Awareness (SDA) and founded a non-profit called KFM Making a Difference in the Community. Both of these organizations have meant a lot to me as I continue to promote disability activism throughout New Jersey. Since the days of that Oral Communication class I’ve gone on to speak at several different venues about my story and am hoping to continue to mentor and help those with and without disabilities who want to become more aware of disability awareness.
We recently received this e-mail from a parent:
My son was diagnosed with PDD-NOS at the age of two and a half. He’s had years of Skills Trainers and Autism Consultants who have helped him navigate his world. He’s fully mainstreamed in a public school here in Hawaii (he’s in the seventh grade) and is doing exceptionally well (scoring A’s in his Advanced Placement math, etc.) Although his autism diagnosis is his “Big Secret” which he shares with a very select group of people, his English teacher encouraged him to write about his struggles for his English paper (she promised she wouldn’t share it with the class). I wanted to share this story with the autism community because it can perhaps give others some perspective and inspiration with respect to their struggles.
Have you ever had a challenge that you had to overcome, but you did not want anybody to know about it? Hi, I am (name redacted), and I have been dealing with this challenge for as long as I ever lived. I was born with a disability called autism. Yes, I seem like I am functioning regularly in society, but appearances can actually be deceiving. I will explain later what autism is, how I dealt with this and what I have learned from this experience. Come and explore my deep secret of my life.
First, I will tell you the many things I experienced while I had autism. I sometimes had a hard time in school. I was disorganized and I also sometimes couldn’t focus when I was young. I had a hard childhood and this struggle for my “survival” was hard to overcome. I sometimes ask my mom, “Why me? Why did God choose me to lack what other people have?” I felt like I was an alien in school and was I thought I was very different from other people. I felt so discouraged that I ran away from home and ran as fast as I could. I brought clothes, a toothbrush and toothpaste, money to survive and I also wrote a note to tell my mom that I was leaving. I finally came home within four hours of running away from home.
In addition, I will tell you how I solved this dilemma. I try to think positive and try hard in making friends, which was hard for me to do. I was actually good at the academics, but I was (and am still) struggling with planning and applying my strategies to the real world. There were many people out there to help me and I do give them credit to all of their accomplishments. I tried to follow their advice and sometimes failed, but yes they did help me out. I also stay on a special diet so that I can concentrate more. I find it does help.
Next, I shall tell you what I learned from this experience. I learned that I am not an alien and am normal. In fact, I think that this is actually a good experience. I am more grateful to what I can do. I had things that I could not do that other people could do, but now I can do those things, which I do not take in vain. I also finally learned that I have the strength inside of me to overcome challenges. Now, when I do face challenges like this, I can know inside that “I AM AN OVERCOMER!”
Overall, I have reflected on this challenge and I feel good that I could face this challenge and almost beat it. However, I am still facing with this challenge of autism. So far, I am doing well and I think that I have gone farther than I have ever thought I could go. This is a message to all of you: whatever challenge you are facing, find the real problem and solve the real problem. Believe in yourself and have inner strength to fight the problem if it’s physically or mentally.
This “In Their Own Words” essay is written by a seventh grade student in Hawaii and was submitted by his mother.
“In Their Own Words” is a series within the Autism Speaks blog which shares the voices of people who have autism, as well as their loved ones. If you have a story you wish to share about your personal experience with autism, please send it to email@example.com. Autism Speaks reserves the right to edit contributions for space, style and content. Because of the volume of submissions, not all can be published on the site.