I’m sitting with Holden in our home office which we’ve painstakingly decorated with every piece of nostalgia we could find over the years. “This,” Holden says as he waves his hand vaguely at the walls, “this is what the inside of my head looks like.” I sit back and realize that although we’ve been married for over eight years, I’ve never understood my husband as much as I do in this moment.
Just last month Holden was diagnosed with autism, and while this diagnosis has answered some questions he’s had all his life, it has also opened a whole world to him that he wasn’t anticipating being a part of. While looking around at our all-too familiar office, I wait for Holden to be ready to talk. I get the feeling he has a lot of catching up to do.
Lyvonne: At what point did you realize you might have autism?
Holden: Probably about a month or two after we figured out that our son Cade might have it. I was doing a lot of research and things started to add up, for not only him but for myself as well.
Lyvonne: At the risk of sounding cliché, how did that make you feel? Realizing that you might have autism at 29 years old must have been a bit of a jolt to the system.
Holden: Um, really my age didn’t come into play because we didn’t know much about autism, so I was kind of confused. Usually when people think about autism they think of the stereotypes, people like Rainman or those kids that sit in the back of the class who don’t really participate or seem to be in their own little world. While I am neither of those, I was having a hard enough time understanding how Cade fit into that world, let alone how it was possible for me to be a part of that world as well.
Lyvonne: With the introduction of not using functioning labels like high or low when speaking about those on the autism spectrum, were you told where on the spectrum you actually sit?
Holden: The psychologist was actually quite surprised that I fell on the spectrum not as someone who would have earlier been given the separate diagnosis of Asperger’s, but rather as someone with moderate autism like that of our son.
Lyvonne: You talked about the research we did for Cade. What part of it really clicked for you and made you think “Wow, that sounds like me”?
Holden: To be honest I don’t know; I don’t remember back that far. I just remember as I was looking through all the Google checklists of “your child might have autism if” and thinking “wow, this reminds me of my childhood” or even “this reminds me of now.” Of course, at the time of the research, my attention was on Cade and so the thoughts about myself were just in the farthest reaches in the back of my mind.
Lyvonne: Was there something that really stood out from your childhood that just made things click? Once you got to the point of looking into your own diagnosis, I mean.
Holden: As I started going through the diagnosis with the psychologist, she started asking me a lot of questions that brought about memories from when I was a child. Things like going through all of these different social groups as I moved schools or districts, things most kids didn’t seem to go through.
Lyvonne: Were you able to look at Cade and his struggles and see your own within them? Either from your childhood or from your adulthood?
Holden: I don’t know if I necessarily saw myself in him. I really do believe in the saying that if you’ve met one person with autism then you’ve met one person with autism. Cade and I experience the world differently from each other, but I think I see some of the same loneliness in him and it really makes me sad. I hope for a better future for him.
Lyvonne: Seeing as you are experiencing the understanding of autism as an adult rather than in early intervention as a child, do you think that is affecting how you are approaching your own diagnosis?
Holden: Honestly, for me, I think as an adult I’m able to look at the fact that I spent 30 years not having the diagnosis and trying to make me work in the box of society. There is almost a script the rest of the world is going by and I feel like I had 30 years of ad libbing in the world. So now I’m seeing it’s OK to be me and there’s a reason why I didn’t get the same script as everybody else.
Lyvonne: Does that mean that, if given the chance to go back and change things, you wouldn’t choose therapies and interventions and would instead trudge your own path knowing full well there would be massive obstacles you’ll have to overcome?
Holden: I think instead of therapies per se, I would have just preferred having someone help teach me “translation skills.” if you will. I would want someone to teach me to understand things rather than to just conform to them. That’s kind of what my outlook is with Cade. I don’t want to force him to conform to the world, just learn how to live within it and understand others.
Lyvonne: Do you think you would be different today had you been evaluated as a child?
Holden: For me, that’s a trick question. You see, it would have depended upon my mother’s insistence or not on therapies. I’d like to believe that without therapies I would still be the same kid I was; I just may have understood why some things were harder for me. While with them I may have learned to conform and assimilate, but it may have made me a duller version of myself.
Lyvonne: I’ve noticed there have been a few changes in you since your diagnosis. Do you think those are directly related to you understanding yourself more?
Holden: (Laughing) As long as that’s a good thing, yes.
Lyvonne: (Laughing) Yes, of course it’s a good thing.
Holden: Like I was talking about earlier, I spent 30 years trying to make myself fit into the box of society and not having the feeling I could be me and that it was OK. Not that it’s not OK for everyone to be themselves, because I feel they should be who they are, I just didn’t feel like I fit in and I didn’t know why. Now that I do know and I know it’s OK, I feel like I owe it to myself to be me, to be comfortable being me, and to love myself.
Lyvonne: Since Cade’s diagnosis came before yours, do you have a different view of him now that you can understand him a bit more?
Holden: I don’t know that I necessarily have a different view so much as I now have the ability to understand where he might be coming from with things.
Lyvonne: How has your diagnosis helped you?
Holden: At this point in my life, there wasn’t a lot in terms of quantity that it could do, but it definitely has added to the quality. It’s helped me to better find myself and understand myself and my family.
Lyvonne: Looking back, were all of those struggles ultimately worth it in regards to where you are in your life now?
Holden: Looking back? No. They still bring about horrible memories and nightmares of a childhood misunderstood and lonely. I really wish I’d had the opportunity to know this about myself when I was younger so at least I could have understood it wasn’t my fault that I was different.
Lyvonne: Does that mean there is a part of you that wishes you didn’t know you have autism now?
Holden: No! I would never change knowing it. I’m just upset that I didn’t know it earlier. In reviewing a large part of my childhood both educationally and medically, it creates a certain resentment against those who from my perspective prevented me from being evaluated earlier on.
Lyvonne: You do take into consideration that it was the ‘90s and much of what we know now wasn’t even really a glimmer in the eye back then, right?
Holden: I do. But as I look through the documentation and my memories there were a lot of red flags. Maybe they might not have screamed autism to professionals in the ‘90s but it should have said “not neurotypical.”
Lyvonne: That makes a lot of sense. Is there anything you wish you could go back and tell pre-diagnosis Holden?
Holden: I’d go back and say “It’s OK. Don’t worry about the world’s perception and trying so hard to fit in. One day everything will come together and make sense.”
Lyvonne: Well, I think that is a wonderful way to wrap this up. But I’ll still ask, is there anything else you would like the world to know about being an adult with a new autism diagnosis?
Holden: I would want the world to notice that as someone who should have been diagnosed when younger but wasn’t until the age of 30 — not only can we get married and have families of our own, we can be successful in life and our careers.
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Thinkstock photo by Lacheev.