[2013]
A young man sent me an email saying that he was wondering whether he was autistic, and wondering if he should get himself evaluated by a doctor. I asked an autistic young man I knew to reply.
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I’m a thirty-year-old man, Orthodox since infancy, diagnosed with Aspergers before age ten. I’ve been married for four years, and have a young child. I haven’t been all that professionally successful myself, for various reasons which can be summarized as “grew up lazy and got a useless degree.” I should note that I have a very mild form of Asperger’s (I can pass for an extrovert), and every case is different anyway, so not everything I say will necessarily apply.
First, ask yourself: why do I want a diagnosis? I imagine it can be helpful if you want to apply for disability-related aid somehow (I was always too proud and stubborn to try), and it can give you a certain amount of psychological comfort to know that you are part of a large group with common difficulties and experiences. But it also comes with a certain amount of baggage; AS has become quite “popular” lately, especially on the internet, so calling yourself an aspie may simply lead to others upgrading their mental label for you from “nerd” to “nerd, and self-righteous about it.” I tried getting involved in an online aspie community years ago, but grew disillusioned when I realized that they were primarily interested in casting themselves as angry spokespeople for an aggrieved minority. I think that current is still strong in the “movement,” such as it is, and since you’re Orthodox I might add that strong animosity towards religion was also fashionable on my doeum. But that might only be true of the one community.
ASD is also, sadly, a very useful weapon for delegitimizing any and all of your opinions. At present, any belief you have must be addressed on its own merits. Mention that you have Aspergers, and suddenly all your experiences are potentially invalid because they come from a Mentally Disabled Person. This can be taken to ludicrous extremes; I once got into an argument about music where I was told that I must dislike the song “Imagine” only because I am too cold-blooded and emotionally stunted to identify with passionate idealism. I’ve also found that “outing” myself, even to people I’ve known for a while, can cause a subtle shift in their attitude, as if the person they expect from my label overrides the person they already know. All this is not to say “Don’t get diagnosed,” just be aware of what it will and won’t get you.
Now, on the more practical side: do you have strengths you can leverage? I don’t know what your field is, but even if you don’t have savant abilities, you likely have some aptitude for math or science. Even if you don’t, it might be worthwhile to invest in training, simply because tech workers are A. more valuable and B. not subject to the same social expectations. I’m going for Cisco certification right now, even though I’m more of a creative/artsy person. Of course, for all I know you’re struggling as a mathematician, but if not, see what your community college has to offer. You might also try the Asperger Syndrome Employment Workbook by Roger N. Meyer, who is himself an aspie. I’d advise you not to worry about the diagnosis, for now; the first chapter of the book simply describes common work problems faced by ASD people (I recognized a few, not all), so if you find it describes your situation accurately, proceed on the assumption that it can help you whether you are technically this, that, or the other thing. Now, if you find there are special resources only available to the diagnosed, that’s another story.
You mention you have a wife—that’s a powerful resource. My wife has been a big help, pushing me to take risks I might have shrunk back from and pulling me out of self-dug “despair ditches.” I don’t know your wife, but even if she also has ASD she is very likely, just by virtue of being a woman, to have vastly superior social skills. I assume you’ve already sounded her out on your difficulties? E.g., “My boss said X, I said Y, he got upset, how could I have handled this better?” Even if you have, and it hasn’t helped, take comfort from the knowledge that somebody loves you and has your back covered. A lot of people, aspie or not, don’t have that.
Finally, as an Orthodox Christian, don’t forget your priest and other immediate spiritual resources. You can’t expect them to necessarily understand everything you’re going through, but you can’t fall into the trap of thinking that your ASD is your sole defining trait. There’s about two thousand years of the monastic tradition to turn to, as well—bear in mind that a monk, like an aspie, lives in isolation, and therefore necessarily has to live with his own thoughts more than most. You are probably more self-aware than almost everyone you meet, and I should mention in passing that this is an often-overlooked aspie benefit. It makes us a bit less likely to believe the lies we tell ourselves. Anyway, Tito Colliander’s Way of the Ascetics is a quick read, but I felt it helped me a lot when I read it as a teenager, and there’s a good chance it’s in your church library.
Sorry if I wasn’t much help; I don’t know a lot about your personal experiences. That’s just my two cents—[looks up at how much he’s written]—er, two dollars’ worth.
I've wondered too what role spectrum disorders have in my life. Do they apply to me? Anyway if you'd like I am always excited to meet like minded orthodox Christians especially if they speak English which is not always easy to find. Email me I'd love to share my story.
It seems my email is not visible in my above post, here it is ffg52@mac.com
I'm 51 years old and was diagnosed earlier this year with ASD. (I'll note that there is no "Asperger's Disorder" diagnosis under DSM V, though diagnoses issued under the older criteria are still recognized. Autism, Asperger's, and PDD-NOS from DSM-IV have been incorporated under a redefined Autism Spectrum Disorder diagnosis. Some instances that would have been diagnosed as Asperger's under the older criteria might now receive a new diagnosis, Social Communication Disorder, if the person doesn't fully meet the ASD criteria.) Given my age, childhood diagnosis was not an option. When I was a child, the only place the word "autism" was even mentioned was in the description of "Childhood Schizophrenia". By the time I was a teenager, a diagnosis of "Infantile Autism" had been added, which was later expanded to simply "Autism". It wasn't until 1994 that the inclusion of "Asperger's Disorder" expanded autism to include those of who had "no clinically significant general delay in language", cognitive development, or self-help skills. And it wasn't until 2013 when DSM-V provided a broad spectrum diagnosis.
If someone is asking if they are autistic and should they seek a diagnosis, then it's likely they are experiencing impairment and difficulty in one or more of the areas of life ASD tends to affect. It's likely they have long had a sense of being different from those around them without knowing why. A diagnosis won't magically change any of that, but it can provide context and an explanation. And that knowledge can help develop and refine skills and coping mechanisms. We live in a world that does not function with autistic people in mind and it can be difficult to navigate and sometimes even survive that world.
I can say that having had no idea why I was different or why I struggled the ways I did for most of my life, I vastly prefer knowing. I moved pretty quickly from wondering to seeking diagnosis because I needed to know if ASD was or wasn't the answer to some of the questions with which I had been struggling my whole life. I couldn't stand the idea of wondering for an extended period of time. But then, I had lived undiagnosed for half a century.
With that said, it takes work today to find a diagnostician prepared to peel back the layers of the onion with an undiagnosed adult. The current criteria are still pretty new. And even the entire idea that Asperger rather than Kanner had a more accurate understanding of the neurodevelopmental condition we label "autism" is a pretty new one. As such, it can be difficult to find a diagnostician prepared to accurately diagnose ASD in adults.
So yes, if someone is wondering if they are autistic, they likely have some pretty legitimate reasons to wonder and are experiencing some sort of deficit or impairment. The answer may not be ASD, but if they've gotten to the point where it's a serious question, an assessment will answer that question one way or the other. And there's really nothing else that will truly settle it. I can't imagine anyone not wanting to know.
I'm leery of the terms "mild" vs. "severe" or "high-functioning" vs. "low-functioning". They tend to put people in boxes. Those labeled less able to function are then often discounted and sometimes treated as less than fully human. Those of us who might appear "high-functioning" are rarely high-functioning all the time or in every situation. And the label can discount the support we often still need. I prefer the way DSM-V expresses it. Both the areas of social behavior and communication and repetitive, restricted movements and interests have the level of support (requires support, requires substantial support, requires very substantial support) noted along with the understanding that the level of support required in each category can change over the course of our lives. I think that perspective is more helpful.
A diagnosis is not a magical panacea. But it does help. And having struggled my whole life with no idea why, I'm firmly in the camp that it's better to know than not to know.