Adult Diagnosis: Now What?

Once I diagnosed myself with autism, I wanted a formal diagnosis. Many people have wondered why you would want a diagnosis when you’re already an adult.

I can only speak for myself. I have my Ph.D. in the humanities, so I have read a great many philosophers (I read a great many philosophers prior to getting my degree, which was among the reasons I wanted a Ph.D. in the humanities), and if there is a common thread among the philosophers, it is that you need to get to know yourself. To “know yourself”–as written at the Temple of Apollo at Delphi (home of the Oracle at Delphi)–you have to think long and hard about yourself and your place in the world. I add to this having contemporary biological, evolutionary, psychological, neurological, and sociological knowledge about yourself as well. So to me, knowing whether or not I was autistic would allow me to better know myself.

Using the knowledge to better understand oneself means that you use that knowledge to better oneself, to understand one’s place in society, to clarify your past actions. It doesn’t mean you’ll suddenly be able to “fix” yourself; rather, it means you’ll have greater clarity about who you are and why you do the things you do.

That, I think, is what people ought to do with an adult diagnosis. But I know for a fact that that’s not always what happens. I know of someone who suspected her husband was on the spectrum. She started sharing information about Asperger’s with him, and he became convinced he was autistic. As a result, he started using it as an excuse for everything, to excuse everything he did. They ended up getting a divorce.

Too many people cannot seem to tell the difference between having a reason for something and having an excuse for something. Autism is a reason I may fail to notice you trying to greet me in a public place, but it’s no excuse to be rude. Knowing that my autism may make me less attentive to people immediately in front of me, I can make more of an effort to focus on whoever may be closer by, which will make it more likely I will notice when someone is trying to greet me.

There are of course other things I cannot help, such as my short term memory amnesia. Knowing about that won’t help me, but it most certainly does help others understand why it is that I can remember volumes of information while being simultaneously unable to remember your name right after you told it to me. Throughout the years I have been with my wife, I have told her that if she wants me to do something or get more than three items from the store, she will need to write it down. She thought that was ridiculous given how prodigious my long term memory is. When she heard the doctor diagnose me with short term amnesia, though, she finally understood what I had been telling her all these years was true. Now I get lists.

My diagnosis has, I believe, strengthened my marriage somewhat by my wife having a better understanding of some of the things I do and say (and don’t do and don’t say). I’m sure some of it is still annoying, but at least there’s some understanding there of it. And if something gets to annoying, I really do try to change what I’m doing, etc.

I also believe my diagnosis has helped me with my scholarship. I have published several peer reviewed articles on spontaneous order theory–a theory of economics and sociology–and I assumed like everyone else that people were fundamentally the same in their thinking, with slight variations in IQ or between men and women. However, I now know that not to be the case at all. The idea of neurodiversity suggests a much more complex system, a more deeply heterogeneous social system, than most people realize. This neurodiversity is what makes human society so dynamic and creative. The lack of it in other social species it what keeps them relatively stagnant in comparison.

My diagnosis, then, has had a significant impact on the way I think of myself and on the way I think about social issues. When you begin to realize that so many important people in the past and present were on the autism spectrum, and that autism is over-represented among creative people, you start thinking about creativity and social evolution quite differently. You also think about the importance of autism in society differently.

I’m not sure I would have written this blog if only my son were diagnosed with autism. I do not think I would have obsessively learned all I have learned about autism without my being autistic myself, so I certainly wouldn’t have had the depth and breadth of topics as I have had here.

In any case, I’m glad I was diagnosed. I suspect it has weakened some relationships from people who are likely sick of hearing me talk about autism all the time. I also suspect those people miss my talking about topics they found interesting. But it has also strengthened a few relationships. I know myself much better than I did before, and I think I understand the world a little better as well. Which is probably no coincidence. Know yourself, know the world.

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The Struggle With the Daemon

I recently finished reading The Struggle with the Daemon: Holderlin, Kleist, Nietzsche by Stefan Zweig. For someone on the spectrum who is himself a literary writer (or, at least, I try to be), this book very much felt like it ought to have been titled The Struggle with Autism, especially as each of the three artists’ sections felt like an aspect of my personality was being emphasized–albeit, much more intense versions of me (I’ve managed to avoid descending into a final state of insanity, and I’ve never felt suicidal–though it’s my understanding that the last is an all-too common feeling among autistics).

Holderlin would seem the hardest case to make among the three, except many of his feelings as described by Zweig seem my feelings as well. Getting caught up in an obsession, and feeling like the rest of the world is a terrible imposition on your work is a very autistic way of being in the world–at least, from my experience.

Kleist, on the other hand, just screamed “autism” from Kleist’s description. For one, Kleist wandered all over Europe, and autistics are known to be avid wanderers (which can be a major problem when the wanderer is a child). “He was reserved to excess, and kept everything locked up within himself. He did not express his passions either in looks or in spoken words” (158). Zweig says

he remained mute, not from dumbness or sloth, but from overpowering chastity of feeling; and this silence, this dull, brutalising, oppressive silence, which he would maintain for hours when in company, was his most salient characteristic–that and absence of mind, a confusion which obscured his clarity of intellect. When talking, he would suddenly break off and stare into vacancy (158)

He could not converse unconstrainedly in an exchange of the small talk of ordinary life. Convention and customary obligations were repugnant to him, so that many assumed there must be something “dour and sinister” in this unusual companion; while others were wounded by his harshness and cynicism and bluntness when, as happened now and then, pricked by his own silence, he threw of all constraints. (159)

“Those who did not know him intimately believed him cold and indifferent. His intimates, on the other hand, were afraid of the fires that consumed him” (160).

If you’re autistic, perhaps especially if you have Asperger’s, this may sound quite familiar to you. If you know someone with Asperger’s, this also may sound familiar to you. Zweig’s description of Kleist throughout the book only reinforce my original conclusion (based on the above quotes) that Kleist had Asperger’s.

I have already written about my belief that Nietzsche had autism, and Zweig’s description only confirmed my beliefs. However, there is something quite interesting that Zweig pointed out that sounded quite personally familiar–and I would be interested if my autistic readers have had the same experience.

What makes Nietzsche’s transformations so peculiar is that they seem retrogressive. If we take Goethe as the prototype of an organic nature in harmony with the forward march of the universe, we perceive that his development is symbolical of the various stages of life. in youth he was fiery and enthusiastic; as a man in his prime he was actively reflective; age brought him the utmost lucidity of mind. His mental rhythm corresponded in every point with the temperature of his blood. As with most young men, he began in chaos and ended his career in orderly fashion, as is seemly with the old. After going through a revolutionary period he turned conservative, after a phase of lyricism he became a man of science, after being prodigal of himself he learnt how to be reserved.

Nietzsche took an opposite course. Instead of aspiring to an ever more complete integration of his ego, he desired complete disintegration. As he advanced in years he became increasingly impatient, vehement, revolutionary, and chaotic. His outward aspect was in strident opposition of the customary evolution of a man. While his university companions were still delighting in the usual horseplay of undergraduates, Nietzsche, though but twenty-four years old, was already a professor, aspirant to the chair of philology at Basel, that famous seat of learning. At twenty-four, Nietzsche’s intimates were men of fifty and sixty years of age, sages such as Jakob Burckhardt and Ritschl, while his closest friend was the most celebrated artist of the day–Richard Wagner. (288-289)

Zweig goes on and on about the staid, scholarly Nietzsche, then notes that when he was thirty, he resigned from his position with a pension, went to live alone in Switzerland and northern Italy, and transformed himself into the writer of Zarathustra–a transformation that ended with Nietzsche’s loss of sanity. His life is the reverse of Goethe’s.

Now let me give a brief of my own life. In grade school, I wore dress slacks and button-down shirts. In high school, I started wearing jeans, but they were dress jeans. I went to college to major in recombinant gene technology, then attended graduate school in molecular biology. During grad school, I started wearing t-shirts and listening to contemporary rock (alternative music–I started in with the grunge scene with Nirvana’s In Utero, when I was around 22). It was around this time that I started reading Nietzsche, and I also started writing more fiction and poetry, and myself growing more and more chaotic.

I dropped out of grad school, had two massive anxiety attacks, started writing Hear the Screams of the Butterfly to deal with all of my emotional issues, and also took a year of undergrad English classes to get into a graduate program in Creative Writing. While there I was quite bohemian in my lifestyle. If there was a reversal, it was when I started my Ph.D. program in the humanities, where I started off doing creative writing, but ended up with a scholarly dissertation. After graduating, I met my future wife, got married, had three children, and have lived the past decade wasting my scholarly and writing talents in looking for gainful employment. I’ve also grown more radical in my politics, and I think more daring in my art.

Now, do not get me wrong. I would trade nothing for my wife and children. In that I’m a happy Goethe, so to speak. However, an inability to go “full Goethe” in the sense of his life development, has meant considerable employment difficulties. At the same time, I have been fortunate in also not going “full Holderlin/Kleist/Nietzsche” either. I’m instead in an uncomfortable truce, neither giving in to my obsessions nor being able to live a “normal” life.

The scientist I was in college became the artist became the artist and interdisciplinary scholar–became more and more interdisciplinary, unspecialized, going in the opposite direction of most people. I’ve grown less conservative over time, less satisfied with life, more radical. That is, from order to chaos. Nietzsche is a model for my own changes, though I certainly had no intention to follow that model–it just seems a natural development. Yet, I struggle against that development, and thus (mostly) keep it under control. The forces of order and the forces of chaos are always in a constant struggle within me. I continue to alternate between art and scholarship. If anything, my family is what keeps the struggle just barely on the side of order.

Older Fathers and Autism

We have known for a while that there was a correlation between having an older father and having an increased likelihood of having autism. It was once thought that this was because of an increase in de novo mutations in sperm, but recent research says that that can only account for 20% or so of autism cases.

If it’s not new mutations, what’s the explanation?

The authors of the linked piece suggest that perhaps it’s because men with autistic traits marry later in life. In my case, that was certainly true. I started dating very late in life, and I only met my wife when I was 33. My daughter was born when I was 35. My autistic son, Daniel, was born when I was 38. And Dylan was born when I was 40. Dylan does not have autism, but he did have a language delay and he has a degree of OCD, and it seems he has perfect pitch (a trait found in many autistics and their near-relatives). I of course am on the Asperger’s end of the spectrum.

Getting into the kinds of relationships that result in children is difficult at best for us on the spectrum. Some, like Temple Grandin, choose celibacy because these relationships are so complex and difficult. Many solve the problem by marrying someone else on the spectrum. And I’m willing to bet those are also delayed relative to when most people marry and have children.

It will be interesting to see a study on this, to see if it holds up. But given the nature of people on the spectrum, and given the fact that autism is genetic and thus completely heritable, it wouldn’t surprise me in the least if the explanation were simply that autistic people tend to marry and have children later in life.