Oakton Community College Autism Interview

The following is an interview that I had with Oakton Community College student Kelly Bedford, a friend of mine from high school, that she was assigned to conduct for an English class.

Q: How old were you when you found out you had autism?

I was diagnosed with autism when I was 3 years old. Back at the time I was diagnosed, most people and doctors did not know as much about autism as they do now. The doctor who diagnosed me told my parents I’d never amount to anything and have a meaningful life. He was wrong.

However, I did not find out I had autism until I was 8 years old. I was homeschooled at the time, and my mother and I took regular walks for exercise. One day, she told me if she noticed I was different than other kids and other people, and I told her I did. Then she explained that I had autism and that that was why I had those differences.

Q: How does it affect you personally?

There are many ways in which autism affects me, but here are a few:

I have sensory issues related to autism, such as hypersensitive hearing. I am bothered by certain loud noises, usually sudden, sharp loud noises such as barking dogs, whistles, and school fire drills. When I hear those noises, I feel shock that is similar to being electrocuted or frightened. Other loud noises, such as loud rock music, do not bother me as much since although the initial shock of the loud noise, my ears can acclamate to the loud noise, as it’s a sustained loud noise rather than a dog that barks unpredictably and loudly. The surprise of a sound can make the sound worse for me—if I am surprised by a sound that bothers me, it bothers me a lot more than if I know the sound is coming, because then I can prepare my nerves and my body for that sound.

In addition, I also have preferences for certain types of clothing over others due to touch sensitivities. I typically wear long pants and long shirts because I dislike feeling air over my arms and legs, regardless of the weather, and rarely wear T-shirts or shorts.

I also have social issues that emerge because of my autism. For example, I cannot always understand the social skills in a social setting instinctively the way others can. This, I believe, is in part because I don’t always have the same emotional responses others do in social settings. I am not bothered or made uncomfortable by things that make others uncomfortable, and am made uncomfortable by things that don’t bother others. Because of those differing emotions, I cannot always know what is appropriate or inappropriate, or if I am upsetting someone, as things that make others mad do not make me mad, for example.

Back when I was in high school, I had a group of close female friends that coached me on how to have a baseline level of appropriate social skills, and this was the key to social success—whenever we hung out, I would tell them how I acted in different social settings and they would coach me on how to behave more appropriately, and let me know if I had acted inappropriately. I valued their coaching and suggestions highly and still keep in touch with these friends today.

I also have organizational troubles as well. I can be very absent minded and lose a lot of my belongings, spending long amounts of time looking for things that I have lost. Because I have a hard time organizing papers in a binder, I prefer to just leave my stuff floating freely. Interestingly, it’s actually harder for me to find something organized in a row or a section in an binder than for me to just randomly find a piece of paper free floating with another sheet of papers in my backpack, because of the mere difficulty organizing my stuff can be due to my autism.

Finally, because I am higher functioning, one of my most major difficulties is coping with these symptoms while sometimes not being perceived as autistic due to my high social and verbal skills. People do not always assume I have autism, and expect me to be a normal person. Therefore, when my autistic symptoms eventually show, I can be judged more harshly because people can think I’m weird and crazy rather than just being a high-functioning autistic.

Q: When younger, what are some signs/symptoms of autism?

The symptoms of autism that younger children face are not that different than older children and adults. They all have similar social, sensory, developmental, and mental issues, as well as shared interests. Few symptoms differ between younger and older individuals with autism.

The main difference, however, is that younger children and older children have to cope with those symptoms with their respective life issues. A younger child has to cope with his social and sensory issues while in a kindergarten classroom, school lunch and recess, etc., whereas an older adolescent has to cope with his issues in a large high school, negotiating social cliques, and coping with homework and greater academic expectations in classes. These different issues result in younger and older individuals showing their symptoms differently as they encounter different challenges in life.

At the same time, many autistic people of different ages often get along well with each other because of these shared differences. When I was in Lakeland, Florida, for a speaking engagement, I had dinner with the organizer of my presentation, her friend, and their children—an 8-year-old boy and a 15-year-old girl with autism. The 8 and 15 year old had a shared interest—they loved Pokemon together, and they also were bothered by loud noises. They had a ball over dinner and talked Pokemon as if they were best friends, and by the end of the dinner, the 8-year-old boy asked the 15-year-old girl’s parents if she could come over to his house for a playdate.

Q: How do you cope with it?

I cope with my symptoms via the following strategies. My social issues have improved as I have become an adult as I now have more control over the social situations I am in, compared to childhood where I often had to do things because my parents wanted me to be there, even though I couldn’t understand why I had to participate in those situations. For social issues, I put myself in social situations where I am either familiar with the social rules, or know there are people I can rely on to tell me if I am behaving inappropriately if I end up doing so.

Unlike many people without autism I know, I do not get offeneded if I am told I am misbehaving in a social situation. I actually admire people’s honesty over their politeness, as I sometimes have to rely on being verbally told what the social rules are in a setting or a social expectation in order for me to know how to behave properly. When people are too polite to tell me that I’ve upset them, I can’t always tell if they are polite, and might keep upsetting them.

I cope with my sensory issues in the following ways. For hearing issures, I try to make sure that I know when a loud noise might be coming. Back when I was in high school, I discovered that the schedule for the fire drills was located in one of the self contained classrooms for lower functioning students, and I would secretly memorize it when the teachers weren’t looking so I wouldn’t be surprised by fire drills. Today, I make sure I can prepare for a loud noise by wearing earplugs or covering my ears if I think a loud noise is about to occur. I also make sure I am wearing the clothes I prefer—long pants and long-sleeved shirts, and will wear them regardless of what people think or say due to my tactile sensitivities.

As for my organizational issues, I try to use a system of mental imprinting, where I try to stop a second, memorize the location of something I put down or organized, and then remember that that thing is there so I can retrieve it when I need it. This has been, so far, the best way I have coped with this issue.

Another way I cope with issues with autism is via a counterbalancing strategy. Although autism comes with it many weaknesses, it also comes with it many strengths. In this strategy, I take a strength and use it to counterbalance or compensate for a weakness. For example, I struggle with multi-tasking and am not able to drive a car due to my autism because of my inability to prioritize what to focus on when behind the wheel. However, I have an expert knowledge on how to use public transportation, and I know how to find information about and use the public transportation in any major city I travel to so I can get around. I also am an enthuisastic walker and biker and will walk or bike 3-5 miles from a nearby bus stop to get somewhere if I have to.

Q: When did you decide you wanted to speak publically about it?

Four years after I had started speaking publically. I did not go looking for this career, it was given to me. When I was nine years old, my mother started taking me to an annual autism conference to try to find out more information about autism. An autism conference is a place where parents, teachers, individuals with autism, and other people who work with autistic people gather to network and share ideas and research together.

At this annual conference, the MAAP Conference, I caught the attention of the conference’s director, and my mother and kept in touch. Two years later, the conference director asked my mother, when I was 11, if I could present at their annual conference. My mother felt that was too young and she declined to allow me to present. She finally allowed me to present when I was 12, and I was made a keynote presenter for that year’s MAAP Conference. It was there, in Tampa, Florida, where I gave my first autism presentation, the first of many to come.

However, I had strong stage fright at the time and had no interest in speaking about autism or pursuing a speaking career. It was very difficult for me to give that presentation, something I only successfully gave with the help of “happy medications.” I was an extreme success, and had many offers to present but turned down all of my offers, not wanting to present or speak. In addition, I was also suffering from a chronic digestive illness that had made it difficult for me to eat, which also complicated things.

I finally recovered from my illness at the age of 12 but still had no interest in presenting. I preferred writing instead, and during my time of stage fright I wrote a novel on autism titled “Out to Get Jack,” that was published when I was 14.

The publication of this book resulted in multiple offers to return to the speaking scene, and after I turned 15 I realized that now, after three years of declining to present, I no longer had my stage fright and was willing to overcome it because I wanted to speak publically about autism, and educate people about my disability. The need and desire to educate people overcame my stage fright in the end, and I realized I wanted to speak publically about autism.

Therefore, at the age of 15, I returned to regular presenting by giving a successful comeback presentation in South Bend, Indiana, and have been presenting around the United States ever since. I now give, on average, 15 to 20 presentations per year, some of which can be read on a website I have created to advertise my business, www.jamesmw.com.

Q: How did you find out about speaking out?

As mentioned above, I did not start my speaking career—people had eyed me to present on autism before I was even aware they were doing so. I did not realize until one month later that my mother had turned me down for a presentation when I was 11. My mother asked me if I wanted to present when I was 12 at the next annual MAAP Conference. She explained that I would give a speech on autism and my life, and that it would be an original presentation that I would write myself. I wrote my presentation with my parents’ help, and as I said above, it was very successful. Even to this day, I do not rely on speechwriters for my presentations—I write and edit all of my presentations.

Although I did consent to this presentation, I did not realize how much stage fright I would have until a few months before the presentation started. I declined all future offers, except for an annual presentation at the MAAP conference in the next two years, until, as mentioned above, I finally overcame my stage fright with a motivation to teach people about autism at age 15, and restarted my speaking career.

Q: How do these speeches impact the audience?

Presentations impact the audience in the following ways. First off, I speak to a wide variety of people, but the primary groups of people I speak to are the following: parents and other family members of people with autism, teachers and teacher’s aides, professionals who work with autistic individuals and study autism, students from preschool to graduate school, and finally, individuals with autism. My presentations impact each group differently, so I will share how my presentations typically impact these groups of people.

Parents and other family members of people with autism are impacted because by seeing my presentation, they see a successful person with autism on stage giving them advice on how to help their autistic child in the family, and are given hope that maybe, with their effort, their child will be as successful as me. They also are given greater insight in how to understand the children in their families. Sometimes I will keep in touch with families I meet at my presentations and get to meet their children, who I can often relate to and get along with quite well after first meeting them. Sometimes thoese autistic individuals, who have not been understood by others in the world, consider me one of the first people they’ve met they can truly relate to.

Teachers and teacher’s aides are impacted by seeing that although many autistic individuals struggle with school if they are not given the proper acommodations, it is possible for teachers, if they are willing to make the time to understand, give accommodations, and offer extra help, they can enable the autistic students they are working with to become better students in school. In addition, they get to hear a perspective about what it’s like to be a student with autism being taught by teachers whose conventional teaching methods don’t always work for them.

Professionals who work with autistic individuals are impacted in ways similar to teachers, but they also get to hear an insider’s perspective that they can use for their research if they are studying autism, and can use my story as a model for understanding the personality and functioning ability of autistic individuals they are working with or evaluating.

Students from preschool to graduate school, based on their grade level are able to use my presentations that I adapt based on their grade level to complete research and/or homework assignments, as well as learn ways to interact with and accept their fellow autistic students in their schools, as well as understand them better, whether or not they are in preschool, elementary school, middle school, high school, college, and graduate school.

Individuals with autism often find they can relate heavily to the experiences that I talk about during my presentations, as well as someone that they can introduce themselves to and possibly keep in touch with after the presentation. Some of them are happy to find out that they are not alone, and that there is someone else who knows what they are going through. Autistic people vary differently in their symptoms and issues, and therefore, I give presentations not only on my experiences but on the experiences of my friends with autism, and will share stories I have heard from other people with autism and their own unique issues and difficulties. These stories often inspire autistic individuals to be a little more content about who they are.

I do let audience members from each group know that they can friend me on Facebook after my presentations provided they identify where they met me, and routinely get E-mails from people who enjoyed my presentations after the presentation is over that I respond to accordingly.

Sometimes, before I start a presentation, I will ask the audience whether or not they belong to one of the following groups. Then I will adapt my presentation based on who I am presenting to—I have material I present specifically to each group that can relate to their own unique perspective as a parent, teacher, professional, student, and individual with autism. One group that I do not provide material for or specifically present to, however, are doctors, as I do not have any medical training or expertise. Doctors come see my presentations but I openly state that I am not a doctor and cannot give medical advice.

Q: How long do you plan on speaking about autism?

As long as I am given offers to present, make enough money presenting, and am physically and mentally able to travel around the country presenting. I do not turn down any offer to present, and as long as people want me to speak on autism, I’ll be out there, presenting on autism until I die, get too old to present, or decide to retire later in life.

Learning you have autism, to an autistic person, is similar to when Harry Potter learns that he is a wizard in the first Harry Potter book. When you have autism but don’t know it, you often find yourself not knowing why you’re making mistakes, upsetting people with behavior you didn’t know was wrong or inappropriate, and acting differently from other people. Likewise, Harry Potter didn’t know why he was causing “magical” things to happen. When Harry found out he was a wizard, however, he understood why he was different and why he could cause magical things to happen, and likewise, when I learned I had autism at the age of eight, I now understand why I was different from other kids, as well as why I sometimes didn’t always behave properly or understand other people.

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