Why an Autism Diagnosis Can Be Important to a Teen or Adult

I have, on a number of occasions, talked with parents who have an adolescent or young adult who is verbal and has done relatively well academically with an IEP, but has never received a formal diagnosis of autism spectrum disorder despite parental or professional suspicions. These parents often say, “Why bother to get a diagnosis now, he’s almost out of high school?” Or “She’s in college now; it’s not an issue.”  I recently learned a new friend received his autism spectrum disorder diagnosis as an adult, and I asked him if he would share his experience.

By David Caudel

About the Author

David Caudel is the executive director of the new Center for Autism and Innovation, and he is a solid state physicist.. Learning to turn his “disability” into an asset had a profound impact on his life, and Caudel wants nothing more than his fellow “Aspies” to find the same happiness and fulfillment he now enjoys.

Our hope is that this weekly blog will offer information you want to know, so if you have a question you want answered about employment for people with disabilities or other mysteries of the world of work, please email me at janet.shouse@vumc.org.

Why be diagnosed?

When I learned about Asperger’s syndrome (an autism spectrum disorder), I was already in my 30s. It started off as a joke: someone was being sarcastic and said I might have Asperger’s syndrome, but since I take people literally at their word I thought she was being serious. I researched it so I could go point by point to prove her wrong. But, the more I learned about it, the more I realized that I might in fact be an “Aspie” myself. Though growing up in a neurotypical world may often be difficult for an Aspie, by the time I’d heard about the condition I’d already figured out enough on my own to function reasonably well in the world. I could find a job, try to be a good parent, interact with my peers. So why bother with a diagnosis? What’s the point if I can make it through the world without knowing?

Well, for one I had to know. I HAD to know. I don’t like uncertainty, not if I know there’s a path to understanding, so I couldn’t live with the doubt. So, I found some psychologists in Nashville who specialize in autistic diagnoses and took a whole battery of tests. There were interviews, puzzle-solving, probing questions about my life, a full IQ test, the works. After a full day of testing, they approached me and announced I was definitely on the autism spectrum. I worried that they may be mistaken. I demanded further tests to be absolutely certain. They smiled and told me that that was a very Aspie thing to ask for, and that they were certain. As they were experts in the field, I eventually let go of my doubt and trusted their diagnosis.

I was officially an Aspie.

I sought out support groups, spoke to experts, scoured YouTube, looking for others of my kind. Support groups were a mind-blowing experience for me. See, I have never felt like I was a part of a group. People sometimes saw me as “one of them,” but I always knew I was not. I am always the outsider, the stranger, the one intruding on other groups. I will never forget that first meeting when the other Aspies started to speak about their experiences. My struggles, my perspective, were being spoken of in their voices. Suddenly I wasn’t unique in the world; there were other people who saw what I saw, felt what I felt. I had a people. I belonged. If you go your entire life never feeling a sense of belonging, and then this whammy hits you, I promise it’ll be a moment you never forget. Right there is one of the reasons I’m thankful I got a diagnosis.

I am most grateful for coming to a better understanding of myself. In learning about autism, I came to know myself better – why some days are better than others, what I’m good at, and what I’m bad at. But most importantly, I came to learn why NTs (that’s neurotypicals, or normal folks, if you’d prefer) like to talk about NOTHING. See, for an Aspie like me, verbal communication is all about sharing information. So I’d go nuts when I saw two NTs talk about NOTHING! Why? One fellow looks to the blue sky and says, “Lovely day we’re having,” and the other responds, “Yes, yesterday was nice, too.” Why waste breath on such obvious things?!?  I’d boggle at this and shake my head, but no longer. Now that I know about nonverbal communication, I understand it’s not the words that have meaning, but the act of speaking itself. Nonverbally, they’re saying “Hey, I see you as a valued member of my species, I’m there for you,” and the other is saying “Thanks, me too. Look at how we think alike!” Or when people put candy out at their desk – they’re saying “Hey, I like to talk, and I value you people, come have a piece of candy while we connect!” Learning about my differences helped me not only to understand myself, but to also make sense of what I thought was nonsensical. I now look upon NTs with a new understanding, and it’s helped me to better connect with the rest of my species.

Finally, I’m grateful for my diagnosis because I have children. To varying degrees, all three of my children are also on the spectrum.

Let me explain. Growing up was torture for me. The whole world was crazy. Then I really despaired when I discovered everyone was crazy in the same way. Somehow, everyone was receiving secret lessons on how to act around each other – when to laugh, when to cry, when to be assertive and when to be submissive. When I didn’t respond appropriately, the group would turn on me, the monster, for not reacting properly. It was all frustrating and maddening. I was a miserable wreck until my mid-20s, when I’d finally learned enough to ape normal. Oh, most days I fit in well enough, but I still slip up enough to find interacting with normal people to sometimes be a harrowing and stressful experience. The thought of my children learning, the way I did, how to survive an NT world like that makes my chest hurt and my eyes tear up. I start blubbering if I think about it too much. So I’m grateful for my diagnosis because I can take what I learn about NTs and share it with them. I can get them professional help. They still struggle, especially my youngest, but I will give anything, do anything, to make their life lessons just a little less painful than mine. We Aspies cannot “trust our heart” to find our way in life – our instincts are terrible. We learn to use logic and critical thinking, and that works best when you understand all the variables in the equation. My children are grateful for my insights – I see the world the way they do, I understand how they think, and I can help them make sense of the nonsensical.

A diagnosis removes doubt. If you’re hurting, it is best to identify why you are hurting. How else can we get better? Ignorance is the enemy that brings so much pain and misery to our world. The cure for that is knowledge. Know thyself.