Why?  Why is the question I am always asking?  This “why” is constantly on my mind and serves as a focal point of my writing.  This is the “why” do I have autism question that beats in my brain every day of my life and which serves as a source for me to seek out what meaning or purpose does autism have for me.  

The numbers of us afflicted with autism have increased at astronomical rates, and I’ve been trying to understand how autism impacts others’ lives as I search for my own answers. Unfortunately for me, none of my local friends who have autism have expressed their innermost thoughts about their disorder.

The reason for their silence is that they are either incapable of giving their thoughts or, more frankly, we have simply not had this discussion. Ultimately, my search to understand the meaning of my life with autism has been difficult, so I have sought out other sources.

Recently, I saw a story about Anthony Ianni, a motivational speaker who talks to audiences about bullying.  What makes Ianni so special is that he has autism. From his website, Ianni has the following quote:

Bullying can affect everybody today, including people with autism. A stat most people don’t know is that 65-90% of kids with autism are the prime target for bullies. I myself was one of those victims when I was younger and it continued until I was a freshman in high school. After I heard this stat I knew I had to take action!

I could relate to his statement as I too was a victim of bullying when I was in grammar school, and only because of my autism. Like me, Ianni is a college graduate; he received a degree in sociology from Michigan State University.

Although I am not an athlete, what sets Ianni apart from me is that he was also the first person with autism to play basketball at a Division I NCAA school. I was curious to know how Ianni has been able to succeed despite his lifelong diagnosis of autism, so I reached out to him. He responded that he was very excited to speak to me and share his thoughts.

My questions for Ianni were comparative in nature as I wanted to see how his life with autism was similar or different from my own. I began by giving him some background about myself when I was young: “I was born on March 22, 1994 in New Orleans with an uncomplicated pregnancy according to my parents. I met all milestones and was even speaking. I have seen videos of myself at that age and it upsets me greatly. How about you?”

Ianni replied, “I’ve seen videos and my IEP reports about me when I was a young child. It does kind of upset me because now that I’m older and I look back at those videos, reports and pictures, I always say, ‘There’s no way that was me or no way I ever said/did those things.’ So, there are times I do get upset, but at the same time I look at how far I’ve overcome in my life from watching those videos and reading those IEP reports.”

Wow! was my first thought to his reply. I guess that I am not the only person with autism to feel this way.  I have watched this video of myself answering a phone and clearly speak into it just as Ianni did. Where did that little kid vanish and why can’t I voluntarily vocalize words out loud? Granted, all of us on the spectrum are so different, but it still doesn’t reassure me and it makes me continue to search for myself.  

How often have we heard about parents complaining to pediatricians that their child does not speak only to be ignored by those health care providers? I began my next question for Ianni this way. “I was given the diagnosis of autism by a child psychiatrist and told that I would not amount to much by my pediatrician. Was this your experience too?”

Ianni replied, “Yup, during my IEP meeting when I was 5, a group of doctors and professionals told my parents that because I was on the Autism Spectrum to not expect much from me. They told my parents I would barely graduate from high school, never be an athlete or go to college and would end up in a group home with others like myself when I eventually graduated from high school.”  

Oh my God! Is this the party line for pediatricians? Is this reply a part of their manual for dealing with children with autism? I was completely blown away by his response to my question as my parents have said that they received no guidance from our pediatrician other than to place me into special education programs. It was simply inconceivable to me that there are others like myself who do not have physicians to support autistics.

I have written a lot about the different therapies that I was exposed to whether it be Applied Behavioral Analysis(ABA), Floortime, Music Integration, or Holistic medical treatments. They have all helped me in some way with each contributing to the success that I have had with my education and subsequently as a writer. So, I was curious to know, what help did Ianni receive in the pursuit of his dreams. “What type of therapies did you have when you were a kid?  Do you consider them successful?”

Ianni replied, “When I was in school, I had speech therapy from when I was in kindergarten until my junior year of high school, and I can proudly say that those speech sessions helped me tremendously in so many ways. Especially when it came to my understanding of speech and language because growing up I had a hard time understanding nouns, verbs, idioms, and sarcasm. And my speech sessions would help me understand those better.”

In my experience, the therapies that I have undergone did not induce spoken language. Though, more importantly, they have helped me develop cognitive abilities which have made me think like a neurotypical person. I just was not forced to memorize words and objects that are consistent with the Pavlovian-like ABA therapies, but instead learned how to apply their meanings to my everyday life.

Many autistics have a multitude of medical issues, and I was curious if Ianni experienced similar medical complications. “So many of us have other medical issues alongside our autism. Studies have demonstrated that many of us with autism have some form of epilepsy and this includes me. Do you have anything with autism?”

Ianni replied, “No, I don’t have any other medical issues with my autism. Just a diagnosis.” I chuckled at his answer. Oh, how I wished my diagnosis of autism was the only issue that I had to deal with and not the haywire that epilepsy makes of my brain and life. I am so jealous. Why can’t it be so simple for me?

Pursuing an education had a big impact on my life; however, the process was complex and dependent on a lot of people at every level, which included grammar school, middle school, high school, and university. The multitude of teachers, counselors, therapists, and fellow students provided me with the support and guidance to succeed.

I graduated from Tulane this past May with a degree in English. How ironic is that since I can’t speak out loud! So I asked, “Can you tell me about what accommodations you may have received in college and did they help you to succeed in college?”

Ianni responded, “The accommodations I receive when I was in college were comprised of extended time on my tests, a separate room because I couldn’t keep focus on taking my tests in a regular classroom, and I had a reader for my tests as well. I also had tutoring sessions a lot when I was at Michigan State. I can proudly say that the accommodations I received from RCPD (Resource Center for Persons with Disabilities) and Michigan State helped me succeed tremendously in college.”

After reading this reply, I felt very proud of my alma mater, Tulane University. Every semester at Tulane, the Goldman Office for Disabilities would introduce me to the faculty so that they could see who I am and discuss accommodations for me so that I could be successful. Much of what was granted to Ianni at Michigan State was also given to me at Tulane.

If one looks at me, one can easily see some features of autism such as hand flapping or occasional obsessive-compulsive behaviors. One will see that I cannot speak out loud. So, I asked, “what features of autism affects you today and how is it accepted by your family?”

Ianni replied, “I still have my struggles with the language aspect, aka understanding jokes and sarcasm, knowing and not knowing when people are being serious or just joking. And I still have a tendency to say and do things differently. My family accepts it fully and I’m not afraid to ask them for help or clarification if I need it.”

Ianni and I are both very lucky that we have family and friends who are very understanding of our personalities and quirks. There were many occasions in my school years when I might get loud or get up close into someone’s personal space. My friends would brush it off and usually say, “It’s ok, It’s Ben.” My family also recognizes my autistic tendencies but also accepts who I am mainly because they have no choice.

Four years ago, I was lucky to meet ex-NFL player Steve Gleason, and we were able to describe to one another what it was like to have our conditions, his ALS and my autism. Steve said that he had never met anyone with autism and asked me to tell him about It. I was floored by his request but I was happy to describe to him what autism is all about. So, I asked Ianni, “When you tell someone that you have autism, how do you explain it to them?  Are people curious about it?”

Ianni replied, “I tell them that I’m very black and white with things, especially when it comes to the language aspect of it. I explain to them my struggles as well because the one criticism I get a lot from people is ‘Oh he doesn’t have autism because he doesn’t act like it or I don’t recognize it.’ That’s when I tell people to sit down and chat with me first before you judge me.”

He continued with, “But in the end, it doesn’t matter what people say or think about me because I only worry about my thoughts and opinions. And I’m also proud to say that I have autism and I always will be proud. I’m not ashamed of my diagnosis and neither should anyone else in the autism community. Autism made me into who I am today, and without autism I wouldn’t be where I am today in my life.”

I really appreciated his response to this question as I too only worry about my thoughts and opinions. I hope that this would apply to everybody whether one is autistic or normal. The one part of his response that I strongly disagree with is the statement of his “being proud of being autistic.”

I can’t be proud of not being able to interact with everyone in a manner that is socially acceptable. I am not proud that I make people feel uncomfortable because I have autism. Autism affects everything that I do or cannot do. It is a life of entrapment which smothers my soul and prevents me from being like one of the guys.

How wonderful would it be if I had the ability to be an independent person who could travel anywhere and inform people that I was once afflicted with this disorder that was equivalent to being in solitary confinement? While I learned so much, I still feel like I have so many questions. Who am I? For now, I guess that I will have to continue with my search.