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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Sharing a Co-Morbidity Doesn’t Mean Autism Doesn’t Exist

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My wife shared this image on Facebook. The things surrounding “autism” are all things that can be co-morbid with it. For example, I have general anxiety disorder–meaning I have anxiety all day every day–but I don’t have Tourette’s. Not everyone who has general anxiety disorder has autism, of course, but if you are autistic, you have general anxiety disorder. And not everyone with Tourette’s is autistic, but a higher percentage of autistics have Tourette’s.
 
There are those who think that having daily rituals is having OCD. Having rituals is not really quite OCD. Rituals are a way to create order in life, and is therefore something you will find autistics doing at much higher rates than, again, the non-autistic population. True OCD would involve someone who cannot leave a room without turning the light switch on and off exactly 15 times each time, or who gets “fascinated” by a shoe for 30 minutes straight. Or it may involve being unable to stop thinking about something all the time–such as sharks, for example, or in my case, self-organizing scale free network processes. The benefit of having what one could call “OCD thinking” is that one can become a scientists or scholar, and then you’re actually paid for what you can’t stop thinking about. You can get a Ph.D. with that way of thinking.
 
Of course, if you’re always thinking about certain things, if your brain is always running at 150 mph, you may have a hard time paying attention. My own hyperactivity is mostly in my thoughts, but Daniel has a hard time sitting still unless he’s involved in his obsessions. Which simply means his hyperactivity is internalized.
 
These things themselves come from the fact that the autistic brain is dominated by positive feedback. Complex systems like the brain have a combination of positive and negative feedback. Negative feedback helps to keep things in equilibrium. The thermostat for your heater/AC uses negative feedback to keep the temperature the same. If you had a positive feedback thermostat, the hotter the room became, the hotter the heater would try to make the room. Things go faster the faster they go. Hyperactivity then occurs because you’re getting overstimulated. This can then push over into a situation where you become overwhelmed by the situation. Reactions to this can include extreme escape behaviors, banging your body against a wall while becoming non-responsive, or having an outright meltdown where you cannot control your actions. The overstimulation occurs in no small part because we also have sensory integration disorder. That means we have a hard time separating out visual input from sound from touch from all of the rest of our sensory input. I experience it as a feeling that my mind is being crumpled up like a piece of paper and everything goes black.
 
I also come with some extreme sensitivities. I cannot stand to have my wrists touched. I jump every time someone does that. I want to remove my skin to get away. But I try to downplay my reactions because people will just think it’s “weird.”
 
Autism is a fundamental structural difference in the way the brain is wired and works. It results in a very distinct set of behaviors. Yet, it is a spectrum, and that spectrum goes from truly debilitating (what is now called Autism 3) through “high-functioning” (Autism 2) to Asperger’s/Autism 1 and, I would argue, ADD/ADHD. Yes, most of the elements which are often co-morbid with autism can be found elsewhere. I have a slight tendency toward manic-depression, but there are certainly people with manic-depression who aren’t autistic, and there are people with crippling depression who aren’t autistic. Yet, those are found among autistics at much higher rates.
 
Those who like to throw around the argument that “autism” is a “mere label” are really just trying to downplay some very concrete elements of reality. There are some things that are “mere labels,” and some things that absolutely are not. Having structural and biochemical differences in my brain that result in my mind being very different from non-autistic people isn’t a label. It’s an acknowledgement of that reality. I’ve enjoyed the giftedness and even the OCD that has come with it. I couldn’t have gotten my Ph.D. without it. And yet, my sensitivities and “weird” behaviors have definitely affected various aspects of my life. One of the best things to have happened to me was for me to realize I was autistic and to get officially diagnosed. It cleared up why I was argumentative (have ODD), why I couldn’t understand why everyone else wasn’t as rational or couldn’t see all the complex patterns I could see. It cleared up why I have all my sensitivities, why I think the way I do, why I avoid being in the middle of large groups of people, why I have blackout and movement seizures, why I have a delay in my response to people, and why I can get confused if people don’t give me the processing time I need.
 
The benefit of knowing I am autistic goes beyond that. Now I’m no longer just that weird person who doesn’t like to socialize who inexplicably alternates between being wonderfully kind and friendly to appearing to be rude (from failing to notice things going on or being confused about a given situation). Those behaviors are now able to be explained. Which doesn’t mean I shouldn’t have someone say, “Hey, so and so said hi to you.” I do. It helps. Nor does it mean I shouldn’t have certain behaviors pointed out to me, because when they are, I become more conscious of them and the fact that they may make non-autistic people uncomfortable, so I should try to change that behavior. At the same time, there’s always a degree to which we cannot help our behaviors. In a room full of autistic people like me, the non-autistics would stand out and it would be their behavior which would seem out of place. And if we insisted they fit in, they would seem socially awkward and would have an extremely difficult time fitting in.
 
The long and short of it is that autism is a real thing with real behavioral and cognitive differences in those of us who have it. It’s important people know Daniel is autistic. That way people can understand that if he’s in a situation with a lot of people where he’s being completely overwhelmed that he’s not an out-of-control brat who just need some strong discipline to straighten him up, but actually cannot integrate what is going on, positive feedback is dominating, and he’s so completely overwhelmed he shuts down until he resets (in a closed system like the brain, positive feedback doesn’t run away forever, but rather creates cycles). I want people to understand that. I want people to adjust their expectation and to make room for “odd” behaviors so they can reap the benefits of our existence.

Autism and the Emergence of Art

Around 30,000 years ago, extremely detailed, realistic art emerged in cave paintings. Believe it or not, there are many scholars out there who believe this occurred because the artists were autistic.

Lead author of the paper, Professor Penny Spikins from the Department of Archaelogy at the University of York, said: “Detail focus is what determines whether you can draw realistically; you need it in order to be a talented realistic artist. This trait is found very commonly in people with autism and rarely occurs in people without it.”

Which itself raises some interesting issues regarding the history of art and the proliferation of realism during periods such as the Renaissance.
A related article also suggests that human societies really took off only after they learned to tolerate the presence of people who thought and behaved differently. Oddly, we seem to be losing that trait even as we are gaining acceptance of people who merely look differently.
Either way, it’s obvious that autism has been around for a very long time indeed. The idea that autism may be adaptive for humans at the level of group selection is something I myself have suggested. It would appear that autistics are important for the development of artistic styles and a concentration on extreme realism. Of course, that means that during artistic periods dominated by iconoclasm, such as we saw in Modernism and Postmodernism, select against autistic artists. It is likely, though, that we will again have our day.

Who is up for another autistic-lead renaissance?

 

 

Autistics Helping Autistics

Medical Express has a piece on an autistic man, Kyle Barton, who lives in the Plano area and who attended UTD who has had a hard time finding a job. The title of the piece is Man with Autism Helps Design Virtual World to Make Life Better for Adults like Him. The entire thing is well worth reading, and I don’t want to summarize it. The article not only discusses his project, but goes into the struggles he’s had finding a job.

I certainly understand that struggle. Barton certainly should not be unemployed. He is a graduate of UT-Dallas and, very obviously, very intelligent. And yet, he’s struggled to find work. I have a Ph.D. from UT-Dallas, and yet the only work I’ve managed to get have been adjunct professor jobs, and temporary and part time work. I’m incredibly thankful I now have a full time job, but it’s as a paraprofessional (don’t get me wrong, I love the work I’ll be doing, but I should be making far more given my education and abilities).

While I do hope that Barton’s work will help many autistics navigate the world better and, hopefully, find and keep work, there’s a certain absurdity to someone like him or me having trouble finding employment. We seem to mostly be guilty of being socially awkward, spending too much time working at work, being too creative, and treating too many people as equals. The fact is that most people are completely intolerant of any real differences in thinking and behavior and only tolerate superficial differences.

 

Time to Write

While I was doing pretty good keeping up with this blog since I started it, the fact of the matter is that I have been writing less and less and less recently. The reason isn’t that I don’t want to write nearly as much. Quite the contrary. The reason is that I’ve been very busy teaching of late.

I have been working as a substitute teacher this past school year. Through most of the year, I was subbing at high schools, about half in regular classes and half in special education classes. This was very low-demand overall for me. I could mostly sit and read, sit and write, and if I wrote anything that I could use for this blog, I’d transcribe it later.

However, since February, I have been working exclusively at a school in their BSC as an emergency sub. Becoming essentially a full time faculty member really changed the dynamics such that it became more difficult to work on things like my book or my blog. I have gotten some reading done, and I have written a few poems, but those were about the only things I could really work on given the time demands during the day.

Of course, when I get home, I have my wife and three children, with whom I get to spend some time between making dinner and doing freelance writing work. I have tried to do more and more freelance writing work precisely because of the difficulties I have had getting a full time job. At the same time, I am hoping my success will result in something full time there.

In any case, the summer is almost upon us, meaning summer break. For a sub, bad for the checkbook, but more time at least. I’ll be spending as much of my time as possible doing freelance writing work, of course, but I am also hopeful that I will be able to return to my novel and, of course, this blog on a more regular basis.

Nonfiction, Science Fiction, and Fantasy

In two past articles, I have argued that autistics don’t typically like fiction and that we tend to prefer science fiction and fantasy over more mainstream fiction. This seems to be contradictory, but I would argue that both are true.

Autistics tend to read less fiction and to not like fiction; however, if they do get turned on by fiction, it’s likely to be either science fiction or fantasy. I suspect that more “mainstream” fiction is too ambiguous for autistics– that is, the boundaries between the real (nonfiction) and fiction is too blurred and thus a bit confusing–or perhaps it’s that science fiction and fantasy are more focused on plot (action) than on character development. The characters in science fiction and fantasy are less “human” so to speak, than in mainstream novels. We have a hard time relating to characters in the latter than in the former, as a consequence.

With science fiction, at least, there is also a tendency to have a focus on science and technology, two areas of particular interest to many if not most on the autism spectrum. While I always wanted to read, I have discovered many on the spectrum do not care to read all that much. But really, it’s like almost anything with autism–find the right topic, and it’s easy to get them to read (or talk). I recently got a 12-year-old autistic boy to read a book simply by finding a book about sharks (like Daniel, he’s interested in sharks). Until then, getting him to read was like pulling teeth. Without novocaine. And without strapping the patient down.

Part of the problem may simply be that many on the spectrum simply don’t see the point of reading fiction. If it didn’t happen, if you can’t learn something factual from it, why read it? Combine that with the typical autistic problem of understanding metaphors and other issues of literalism, and it might make sense why many autistics avoid fiction.

Science fiction can of course help with these matters, because science fiction involves science and technology, meaning it’s rooted in things autistics tend to like. The preference for fantasy among fiction-reading autistics, however, is a bit more of a mystery. Perhaps the fact that it’s so obviously untrue makes it attractive. It’s all so outlandish, outrageous that we’re comfortable in it.

Nietzsche, who I suspect to have been on the autism spectrum, argued that art is true because it doesn’t pretend not to be untrue. He was talking about how we believe science to tell us what is true, with scientists themselves presenting their findings as true (when their findings are ultimately falsified into theories and generalities that cover the variations among all things), but we can perhaps see how this attitude, when applied to literature, would make even more obviously “untrue” literature, like fantasy and science fiction, more attractive. Surely the more untrue art appears to be, the more true it really is.

Science fiction, fantasy, and video games are all plot-driven and do not focus much on character development. The internal goings-on of the average person is a mystery to us, and so it’s also possible that science fiction and fantasy are comfortable to us because these genres tend not to focus on those things. We see people acting, and we supply our own interpretations of why they act that way; we can do the same in plot-driven fiction.

All of these are mostly preliminary thoughts on this issue. I like fiction, but if the books I’ve read are any indication, I like nonfiction books more. Yet, I write fiction. But the reason I write fiction–especially short stories–is that I am typically trying to figure out what people were thinking when they did certain things. And of course I read fiction because I write fiction, as any moderately decent artist would. I haven’t written any short stories in a while, and I have several unfinished novel manuscripts, but I am now working on a fantasy epic, so I guess I’ve learned to become who I am.

We Meritocrats

About a year and a half ago I read Neurotribes. Throughout it I kept seeing in each of the autistic cases Silberman mentions that they seemed particularly focused on merit.

I definitely believe in meritocracy, and I always have. It was only reinforced when I read (and recently re-read) Ayn Rand’s Atlas Shrugged, in which Rand (who was almost certainly a fellow Aspie), provides a epic celebration of meritocracy. Indeed, her primary argument against socialism or even the interventionist state is precisely that people are rewarded for things other than merit (for her the worst is mere social connections).

It is perhaps not surprising that people who identify with their work and who aren’t particularly social would think that the best system is one that recognizes people for their actual accomplishments than for their social/political skills. Of course, social skills and political skills are practically the same. Which is perhaps why many on the spectrum I have met have been particularly anti-politics if not outright libertarian. To us it seems a pretty stupid way to get things done, since nothing is getting done while everyone involved get rich and powerful while producing nothing of worth to anyone.

We thus have a tendency to respect creators, inventors, and other such entrepreneurs but not the kind of people who get what they want because of their personalities or their social skills or who they know. We appreciate the artists and the scientists and the inventors but not the social butterflies and the politicians and the demagogues.

But let’s be honest. We creators need the kind of people who can promote our work, if we’re not natural promoters (and we on the spectrum definitely are not). We autistic creators in particular need a promoter in our lives, someone who will make sure our things are published, sent out, or marketed to the right people.