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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Cicadas

The last several days there has been a cicada singing right outside our front door. The first two days, Daniel was complaining about it because it was so loud, but today he was okay with the cicada. However, after only a few minutes of singing, the cicada stopped singing.

Daniel: Hey! The cicada stopped singing. It must have gotten a girlfriend.

After a few minutes, the cicada started singing again.

Daniel: Aww! The female must have changed her mind!

When it comes to information about plants and animals and nature in general, that boy remembers everything.

On (Not) Getting Disability When You Have the Hidden Disability

Over the past several months, I have been trying to get Disability from Social Security. Today I have been denied for the second time. Let me quote the most recent rejection letter:

You said you are disabled because of autism, aspergers, hip displasia, flat feet, anxiety, sensory integration disorder, and memory loss. However, your current symptoms are not severe enough to be considered disabling.

Apparently being unable to stand for long periods of time because of ever-increasing pain from flat feet, being unable to do physical labor because of constant and ever-increasing pain from hip displasia, being diagnosed with general anxiety disorder by the psychologist they sent me to, and all of the issues associated with autism/Asperger’s, including short term memory loss issues and sensory integration disorder, doesn’t make you disabled.

Those who have been following this blog know many of the problems I have had with getting and keeping jobs. If I even get a job after the interview, I cannot seem to hold on to it for long. Literally, the longest I ever had a job was a little over a year and a half. I had two such jobs. One of them I left because I was moving from Hattiesburg, MS to Dallas; the other was at UNT-Dallas, where my contract wasn’t renewed.

All of the problems I have had with remaining employed have stemmed from my autistic behaviors. The problem is that, if autism is a hidden disability, it seems to be so hidden with me that for the longest time very few people, except those who knew me very, very well, would even believe I as on the spectrum When you meet me, I’m often articulate, I can be charming under the right conditions, I’m highly educated (Ph.D.), and I’m highly intelligent. I can fake it for a fair amount of time. Enough for many to think I’m merely a little introverted.

The problem is what happens over the long term, or if I’m not in ideal conditions. If it’s too loud, too bright, too crowded, I start to feel overwhelmed. My anxiety–which I have learned really never goes away, but only waxes and wanes like the tides–increases, and as my anxiety increases, I become increasingly irritable. Over time, you will see me “goofing off,” which really means I’m writing something down to get it out of my head so I can continue to concentrate on work. But of course, you can’t do anything non-work-related on company time (except gossip, of course, which I don’t do and which takes up far more time than it did for me to write the one line of poetry I needed to get out), so I get in trouble. What they don’t realize is that I’m actually doing what I need to do to ensure I can dedicate the maximum amount of time and concentration to work. But how do you explain that to anyone?

The letter I received goes on to state that

Although you said you have various limitations caused by your symptoms, the evidence does not show that your ability to perform basic work activities is as limited as you indicated. We do not have sufficient vocational information to determine whether you can perform any of your past relevant work. However, based on the evidence in file, we have determined that you can adjust to other work.

I find all of this very curious. And it indicates there is something wrong with the way disability is determined, such that autism is almost always going to be discounted as disabiling. The fact of the matter is that my “ability to perform basic work activities” such as editing, proofreading, and writing is not limited at all. I can do that kind of work, and likely similar work, such as data entry.

But work isn’t just “show up, do your work, leave.” If work were like that, the unemployment rate among all but the most severely autistic would be 0%. Rather, depending on how it’s measured, the unemployment rate among autistics is 20%-80%–the latter for all autistics, and 20% for people who are “mildly” autistic. Why is that? It’s because work is primarily social, and when the requirements of employment are being able to be social and not be “socially awkward” that autistics face high unemployment.

My disability only becomes apparent over time, and few would even recognize it as “disability.” It gets interpreted as inattentive, goofing off, having a bad attitude, and sometimes even lazy (I was always working on projects growing up and was always told I was lazy). Each of these are neurotypicals misinterpreting the way I think and behave. In other words, my disability is only invisible to the degree that non-autistics misinterpret my expressions and actions. And even if I tell them what to expect, can we really expect them to always remember not to interpret my interactions with them through the same lenses they use for practically everyone else?

In other words, how can I get Disability if my disability is invisible? How can I get Disability if the people who are giving it out don’t really believe it’s a thing, but is just made up, is just problems with your “personality,” or whatever else they may believe when faced with someone who behaves as I do?

And I know it’s not just me. My guess is that most autistics face these issues on a daily basis, and not just when it comes to work. But where are the advocates for us? I know there are advocates out there, but I’m talking about public advocates, someone people know, out there talking about these things.

Here is where my articulateness, intelligence, and education may be able to come in handy. I’m actually a good public speaker. Perhaps, if I could find the right venues, I could use these very traits that make me an even more invisible member of the invisible disability bring greater visibility to these very issues.

Unless someone does this, how much of a chance do we have to thrive in this world?

 

Connecting and Communicating on the Spectrum

If you have a verbal child on the spectrum–or adult, for that matter–you are likely familiar with the phenomenon of obsessive interests, and the seemingly intense need for the autistic person to share everything they learned right this very minute. And Heaven help you if you’ve been away a while while they have been learning about their interests, because you’ll be sure to be bombarded with information the moment you see them.

Now, before I address what is going on, I want to make a point by addressing my autistic readers (neurotypicals: keep reading, because this is really mostly for you).

Austistics, if you have a neurotypical person in your life, you are likely familiar with the phenomenon of that person coming home and wanting to share with you everything they did that say and every social interaction they had. While you couldn’t care less about any of that stuff, you need to understand that those things are important to them. They think sharing such information is an appropriate way to create social bonds. While we bond over knowledge, designs, and ideas, they bond over gossip and complaining about what other people do. That is their passion, and that’s what they get excited and emotional about. So please be patient with them about their interests. It may seem silly or superficial to you, but it’s not to them. So let them have their say; don’t try to solve their problems (they hate that and only want to express themselves), even though you will likely come up with a clear and obvious solution; and try to at least feign interest by acknowledging them, asking questions, and demonstrating empathy for their position. The best course, too, is to take their side no matter what, even if it’s clear to you that they are in the wrong, or could be wrong–especially close friends and spouses, coworkers and bosses. Remember, they only want you to listen and take their side; anything else will offend and upset them.

If you do not have autism, this is how you appear to us. You think it’s ridiculous to talk about the application of complex network theory to understanding the economy, designing better slaughterhouses, or blowing up the Death Star, the behaviors of basking sharks, or what happened in Nausicaa (Daniel’s latest obsession); we think it’s ridiculous to talk about what Bob did to Sally at work, that George is having an affair with his boss, and that Mary is being mean again.

The point is that we’re both wrong; neither is in fact ridiculous; both are vitally important to the person; each is desperately trying to connect to the other through their interests. Neurotypical people are primarily interested in people; autistic people are primarily interested in things and ideas. Autistic people, by sharing their interests, are trying to make a connection with you. They are trying to be social. They’re not being social wrong, they are being social different. And when you rebuff them, you discourage them from trying to be social and you hurt their feelings. They then retreat into themselves and are less likely to try to be social in the future.

At the same time, if we were to treat the way you connect the same way, you would consider us to be anti-social, rude and arrogant. In fact, we are often considered to be all these things. This is reinforced by the fact that what we want to bond over is typically intellectual, nerdy, and/or geeky. You think our interests are stupid and annoying, and we feel the same about yours. But it is we who have to adapt.

In short, it is the responses and reactions of neurotypical people to our attempts to bond that contribute as much as anything to any sort of unsocial behavior. When our family sits at the dinner table together and Daniel wants to tell us something, we express interest in the topic, asking questions or otherwise contributing to the topic at hand. As a result, Daniel has been talking more and more. And he’s grown more interested in us as a result. Imagine that! We express interest in him, and he expresses interest in us.

Neurotypical people develop their identities through their interpersonal social networks; autistic people develop their identities through their interests. They identify with their work and interests, meaning if you dismiss their topic of conversation, you are dismissing them personally. That, at leas,t is how we interpret it. It is similar to if someone told you that your friends were all stupid and hateful and they didn’t understand why you would like those people. My guess is that you would distance yourself from that person. Because when they insult your friends, they insult you. For us on the spectrum, our obsessions are our friends. We listen to you talk about your friends; we only ask you listen as we talk about ours.

So that’s why we on the spectrum want to share our interests. It’s how we try to bond with you. In addition to that, we want to share when we want to share because what we want to say is present to mind. That means we can remember everything and communicate it well. If you make us wait, we may not remember in that moment, and it’s likely we will have to search for everything we wanted to say. That means we’ll be full of long pauses, uncertainty, and frustration. Frustration you will probably share since you don’t understand why we’re so hesitant now when we were so enthusiastic before. You need to understand that when the moment passes, it is impossible to recover. And we’ll be likely to forget half our points even as we know we forgot half our points, making us more frustrated–and more determined next time to get it all out.

So now you know why it is that we on the spectrum want to talk about the things we want to talk about, and why we feel such an urgency to do so. Part of the urgency is the way our memory works, but part of it is the same kind of urgency you feel in wanting to tell your friends and loved ones about what the other people in your life did. And that’s something we should both be able to understand.

Improving Executive Function

Tali Shenfield’s Child Psychology Blog has a post on improving executive function. I have written on executive function before (here and here and here and here) but this post goes into greater detail about all the things affected by executive function, including:

  • achieving goals we set
  • achieving goals others set for us
  • short term memory
  • planning
  • organization skills
  • emotional self-regulation

Shenfield also points out that executive functioning is on a gradient, meaning a 12 year old could have the emotional maturity of a 9 year old. Or, as I’ve told my wife, Daniel (8) has the emotional maturity of his brother, who is 5, while his cognitive abilities are much more advanced. But with executive functioning essentially making him “act 5,” most people don’t realize how advanced he is in many other ways.

I have issues with all of the above listed, which shouldn’t surprise anyone. At the same time, once I have all my ducks in a row and I have said I’m going to do something, you can take it to the bank that it will get done. In the end, I can achieve goals I set or other set for me because for me it’s a matter of integrity to do what I say. Deadlines loom large for me, and that helps me overcome at least that issue–when a clear deadline is actually set.

10 Positive Traits of Autistics

Everyone talks about the problems people with autism have–social awkwardness, literalism, various sensitivities, etc.–but few talk about the various strengths people with autism have. Fortunately, there is now a list of the Top 10 positive traits.

We need to talk more about these positive aspects.  Yes, we have terrible short term memories, but we have exceptional long term memories. We tend to think in sounds and images and patterns, have enhanced motion sense, and are highly imaginative. We are detail-oriented, we are extremely creative, reliable, loyal, and comfortable with repetitive tasks. We tend to be less deceptive (likely due to our literalism and strong moral sense) and non-judgmental.

Note that many of these things are traits businesses say they are seeking in a good employee.

Autism, Memory, and Executive Function

Weak working memory is part of the deficit in the “executive functioning” of the brain. The brain’s executive function manages, regulates, and controls many of the brain’s functions, including attention and planning. The working memory holds multiple pieces of information in the mind, to be manipulated. If you have a poor working memory, you will likely have a hard time proving you remember something when you are tested on it. In other words, it may seem that the person has difficulty learning, when in fact the person can learn a lot, but they simply have a hard time demonstrating that knowledge through standard forms of testing.

People on the autism spectrum actually do best when they have an opportunity to demonstrate that knowledge in context. In a conversation, for example, the person will talk about all of the things they know about that given topic. But if you had given that same person a test on the subject instead, they may not be able to recall all of the information in the same way. Especially if demands are being made on working memory, as is often the case with testing. People on the spectrum often have quite good associative memory, verbal working memory, and recognition memory. Recognition memory is what we typically just call “remembering”, also known as recollection memory, and “knowing,” or familiarity memory. Recollection is a slow process, and familiarity is a fast one. Associative learning is learning that takes place in a given context, and is often recalled in a similar context.

In addition to working memory, people on the autism spectrum have problems with temporal order (when things happen in time), source (inability to remember when, where, etc you learned something, while remembering what you learned), and free recall. The latter is, again, central to testing and is not at all indicative of whether or not a child is in fact learning anything. If you require someone to simply recall information in a random way, they can typically do so, unless they are on the spectrum. People on the spectrum typically have to have a stimulus or context in which to remember everything. Then they will spill the beans. And more. There is also a tendency to do better with visual memory and cues than verbal ones. While temporal working memory seems to be impaired, spatial working memory (images, maps, etc) often seems to work better.

Children on the autism spectrum also have to be explicitly taught strategies to recall information, strategies which neurotypical children have naturally. If you want a child to do well on a test, for example, you need to not only teach them information, but teach them how to retrieve the information. People on the spectrum have difficulty with organization and performance skills, but have exceptional abilities to follow rules, so long as the rules are explicitly laid out. You cannot imply the rules or suggest the rules or have unspoken rules—all rules must be explicit, detailed, and clear if you want someone on the spectrum to follow them. And when you do that, they will follow those rules. Also, people on the spectrum have extremely powerful implicit memory. Implicit memory is the ability to remember something or how to do something without conscious awareness of those previous experiences. What this means is that a student, for example, who is on the spectrum and doesn’t seem to be paying attention is in fact learning, gaining information implicitly, which can then be easily recalled later.

The main issue with autism spectrum disorder is the impaired executive functioning, which affects attention, inhibitory control, working memory, cognitive flexibility, reasoning, problem solving, and planning. As you can imagine, these are going to affect school. The autistic student will appear not to be paying attention, will have a hard time inhibiting behaviors and may therefore sometime act inappropriately, will be rigid in her thinking, have difficulty with some kinds of reasoning and problem solving, and have difficulty planning and prioritizing. The child can be taught some of these things and the executive functioning can be developed, but it has to be explicit in the way it’s taught. The more explicit you are about the rules and what you expect from the student, the more the student will learn and behaviors will improve.

Another important element to understand is that the person on the autism spectrum typically has to have things repeated and related to each other to a far greater degree than has to be done for other students. In many ways the autistic brain works in opposite ways from the neurotypical brain. Teaching and testing methods developed for neurotypical students often cannot work well for autistic students. They will show “deficits” where there are really only differences. Teachers need to learn how to teach autistic students, because in many ways everything they are doing is wrong, from the perspective of teaching the autistic brain.

The issue then is that the memory in people on the autism spectrum works and expresses itself differently than it does in other people. The way we test for knowledge and learning, it is not uncommon for us to “find” the student hasn’t learned much of anything or retained much of anything. However, if we test the student in the right way, we will find that they probably have retained far more than the regular student has.