Easterseals Arkansas Outreach met over Zoom with our Autism Ambassador Aaron Likens to discuss National Autism Awareness Month.
Aaron, thank you so much for joining us today. We are really excited about hearing from you. A lot of people know that April is World Autism Month, and I know I’ve had the pleasure of hearing you speak through Easterseals of Arkansas. But in case anyone who is watching this hasn’t heard you speak before, can you give us a little background history on yourself?
Yes. I was diagnosed on the autism spectrum at age 20. Later in life, it became clear that all the signs were there ahead of time, but nobody knew what to make of me. Unfortunately, when I got my diagnosis in 2003 – autism awareness, understanding and acceptance didn’t exist compared to today. So, my doctor didn’t know what it was. He just told me good luck. So, I had to look it up on the internet, and I had never heard of Asperger’s myself.
So, the first thing I read stated that people with Asperger’s will never have a job, will never have friends, will never be happy. Horrible introduction, and unfortunately, I believed those words and became extremely depressed.
But 15 months later, I sat down on my computer and I started to write. I never intended on writing a book. I never intended on anyone really reading it. It was primarily just for my parents – to explain who I was, and why I was. And from there I wrote a book by accident. I had no intentions of writing a book. And after the book was published, one place asked me if I wanted to give a presentation. And one presentation turned into five, and since 2009 I’ve given about 1,050 presentations to almost 100,000 People.
All the while, I was heavily involved in motor sports. And that’s one of the unfortunate things about when I got my diagnosis. When I let that diagnosis define me. I forgot who I was.
At the time I was the flagger for the St. Louis Karting Association. And I stayed in motorsports since 2003. In 2020, I became one of the starters – or flagmen – for the NTT IndyCar Series. Flagging at the top level of American motorsports is an extreme rush. I still can’t believe that I got that opportunity.
So Aaron, in April, like I said earlier, we celebrate World Autism Month. And those watching may have heard of autism awareness in the past. Maybe they’ve heard of autism acceptance. You know, there’s kind of been a shift in the last decade, transitioning to what it’s called. Do you have any thoughts or preferences on that?
Yeah, we needed awareness 20 years ago. As I mentioned, my doctor was unaware of it, which led to catastrophic results from me looking online. Because I didn’t know what it was, and very few people knew what it was. The first time I told a person that I had Asperger’s, they looked at me and they said, “Wait, did you say you ate a hamburger?” They didn’t know the name of it.
The trend this year has been autism acceptance. Myself, I take things literally. So, I don’t know, I’ve been struggling with what are we accepting? Because if I would have accepted my fate or my misguided flawed-logic fate when I read that website, was I supposed to accept what was going to happen? I struggle with that just for my introduction. So, I my personal message is “autism understanding”. What does it mean to be on the spectrum?
I believe that understanding is the foundation for hope. That’s been my motto since I began speaking. If I understand myself, and those around me understand, it’s going to be much better for all parties. And I think growth in each individual is just going to go so much further. So, I personally liked the term “understanding” more, but there are still some areas in the country and in the world that need the awareness aspect. The world needs to be aware that autism does exist, yes, but I like to see that shift more towards the understanding aspect.
I like that. I haven’t heard that understanding component before. Kind of along the same lines. When I was going to school to be a teacher, the big emphasis was on using person-first language. So, if you’re talking about someone, you’re saying, “This is Bob. He has autism,” instead of saying, “He’s autistic,” But lately it seems there’s been a shift and some people prefer to say that that’s part of their identity and they prefer to use that in their introduction. Do you have any cool thoughts on that?
I had arguments with people a decade ago when this shift was happening. And it was really weird for some individuals to tell me how I should be called. Shouldn’t it be each individual person’s choice of language? I mean, some people would want to be a person with autism. And other people might want to say, “No, I’m autistic.” That’s okay. It’s not a bad thing. It isn’t a put down, it isn’t slander. That’s who they are. Just describe them like that.
I got into a different argument about this 10 years ago. For me, if you’re changing the natural flow of your language – X person is autistic, not a person with autism – it’s concerning. If you’re changing your language so much, you must think what I have is really, really bad. If you are altering the natural flow of language, then to you what I have must be so awful that you have to dance around it. I understand people that do use that type of language, that they are thinking that it’s bad. They’re trying to be polite, but for myself, it disrupts the natural flow.
So, shouldn’t the language just be a person’s choice instead of a blanket statement that all people need to conform to? Each person is going to have a different preference on how to be referred to.
Absolutely. That’s kind of what we came to a consensus on with my group – ask the person. Ask about their preferences and find out and then you don’t have to worry about offending someone or saying the right thing. Just have a conversation.
Absolutely. And the most important thing anybody can know about autism is if you’ve met one person with autism, you’ve met one person with autism.
Perhaps that slipped in the awareness aspect. We still need to make people aware of that fact. Don’t put everyone into the same box. We’re all unique. We all have different strengths, different weaknesses. Some will be social, some will not be, but we’re all different. So, don’t do a blanket statement on what all of us want to be called.
I have one more question for you just to wrap this up.
If you had a magic wand, and you could choose one thing for people to take away from World Autism Month, what would be that thing?
The one takeaway, I think, that the world should have on World Autism month, is that autism doesn’t end at the end of April.
It’s an everyday thing for us on the spectrum. Just this past Sunday, while I was working the race at Long Beach, there was a group of security people that were happy that the day was over. They were they were almost like a flash mob. And my coworker and I drove by on a golfcart. And like the flash mob of security people quit dancing and singing as we got nearer in my coworker just said, “What, your job stopping the party in my account?” And he got out and started dancing with them for about 15 seconds. It was really magical, But I’m sitting there absolutely frozen. I had no idea what was going on. Even if I wanted to, I couldn’t partake in spontaneous jovial activity. I couldn’t do it even if I tried with my whole might.
Now is that a major thing in a person’s life? No. But when that happens every day, when a social situation can be confusing, when you take that type of situation and think about what goes on in the classroom – where every single day a person on the spectrum may see random social encounters like that and not be able to partake in it.. And when they are thrust into a social situation like that, they may struggle. They may not know what to do. They may just not be able to communicate whatsoever in those situations.
If you don’t have the understanding of those around that person, we’re going to seem aloof or standoffish. Like we’re almost trying to be rude that we’re not socializing. When some of us in those situations, we quite simply can’t act like the others.
So, the one takeaway is how great my coworker is. He understood what was going on. And he didn’t say, “Why didn’t you join in? Why didn’t you? Why didn’t you?” There was none of that language of “Why didn’t you?” He understood that that’s not my thing. He’s okay with it. He understands it. We continued the day, and everything was fine.
So, that understanding outside the month of April is what I hope people take away. And if the people in the room just understand that even a small percent more, I will come away from that situation not just dreading that. Why can’t I do that? Why can’t I do that?
What I can do is pretty awesome. Everyone has their strengths. Everyone on the autism spectrum most certainly has their weaknesses. But who I am is pretty great. And if those around me understand that, you know, it’s okay. So, I hope the takeaway is just: Try to understand us. Try to be a support for us and our growth and our contributions. And society is going to grow through that understanding.