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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Is ADHD Really Anxiety?

There are a few traits that are almost completely co-morbid with autism: chronic anxiety and ADD/ADHD. If you have autism, you have anxiety and attention problems.

Autism, though, isn’t the only thing where anxiety and attention problems are co-morbid. The same is true of post-traumatic stress disorder (PTSD). When you have PTSD, you are in a state of constant anxiety and constant hyper-vigilance. Hyper-vigilance means you are constantly actively keeping close tabs on the environment. Your attention is drawn to every little thing, to anything you catch out of the corner of your eye.

This hyper-vigilance sounds an awful lot like ADD/ADHD. Hyper-vigilance is actually how I would describe my ADD. It’s not that I have a hard time paying attention–rather, I have a hard time not paying attention to literally everything around me. To the person I’m directly in front of, it’s going to appear that I am having a hard time paying them attention, though.

If we understand ADD/ADHD as hyper-vigilance, this could then easily explain why many with ADD/ADHD can pay close attention to video games, for example. After all, many video games simulate conditions in which hyper-vigilance is needed to succeed.

Obsessive focus on an area of interest could also be understood as hyper-vigilance. Hyper-vigilance will also require hyper-focus if and when the “danger” is located. When there is no actual danger, that hyper-focus could manifest itself in a variety of other ways, including obsessive interests.

Hyper-vigilance comes out of anxiety, and we autistics are full of anxiety. In our case, the anxiety stems from our constantly being bombarded by sensory input. We’re overstimulated, and oftentimes that stimulation doesn’t get integrated well. It should not be surprising if an intense environment should result in hyper-vigilance within that environment. Anxiety is the intermediary.

While I myself do not use any kind of medication, and we do not use medication on our son, I do understand why some might want to medicate themselves or their children. The typical medication is for ADD/ADHD–things like Ritalin–because that’s the most problematic behavior. However, if my suspicions are correct, we are very much treating the symptoms of anxiety rather than dealing with the deeper cause–the anxiety itself.

Since we cannot rewire the brain, we cannot treat the ultimate cause (and we with autism probably wouldn’t want to do that, anyway, since that wiring is part of who we are as human beings), but anti-anxiety medications may go a long way toward eliminating at least the co-morbidity of ADD/ADHD. They would also likely alleviate some of our social issues, which stem from that anxiety.

The general rise in ADD/ADHD and the high prevalence of it in the U.S. can, I believe, based on this thesis, be traced to the fact that our school system is making our children far more anxious than ever before. But that’s a whole other set of issues. I will say, though, that rather than putting more children on Ritalin and related drugs or anti-anxiety medications, perhaps if our schools treated students as ends in themselves rather than as means to achieve testing outcomes to make administrators look good and justify their 6-digit salaries, there wouldn’t be nearly as many children with ADD/ADHD.

Bullying or Joking Around?

Today my wife went to The Warren Center to attend a presentation on bullying and special needs children. The presenter suggested that we encourage Daniel to engage in self-advocacy, that we perhaps should have his teacher discuss with the class the fact that Daniel has autism and what that means–if Daniel agreed to it (which he has), and that we role-play certain scenarios.

We decided to try a role-playing scenario. Anna pretended to be a mean girl insulting our daughter, Melina; then, I pretended to be Melina’s friend just joking around.

Anna: Oh, hi, Melina. Wearing those glasses you look like a real nerd.

Me: Was that mean, or just joking around?

Daniel: It was mean.

So far, so good. I then went.

Me, in a playful voice: Hey, nerd! What’s up?

Anna: Was that mean, or just joking around?

Daniel: It was mean.

There’s little question that anyone not autistic would have very easily picked up that I was joking. If you’re an autistic adult, you would probably even pick up on it from the umpteen times you’ve seen people interacting just that way and having a laugh about it. But Daniel just turned 9, and he’s still learning.

The problem is that we cannot trust Daniel’s judgment on whether or not he’s being bullied. He’s saying his friends are being mean to him, but it’s not impossible that his friends (assuming for a minute he’s making the right judgment that they are in fact his friends) are just joking around with him and he’s misunderstanding the social situation. He also wants to be loyal to his friends, so he is loathe to mention anything negative about them. He doesn’t want to lose the friends he has, regardless of how they may (or may not) be treating him.

Hopefully, if and when his classmates are given the presentation about Daniel’s autism that the bullying will stop. We’ll probably have to have them address the issue of Daniel’s difficulty understanding playful banter among friends, where you insult each other to show camaraderie, precisely because Daniel doesn’t understand it and may be mistaking it for being mean.

Magic

Today Daniel told me that he wanted to develop a new talent. He said he wants to learn magic. And not just any kind of magic: strange magic.

He wants to be able to change butterflies into any color he wants.

He wants to be able to tell butterflies to do what he wants.

He wants to be able to tell what everybody is feeling at all times.

Yes, Daniel considers the ability to tell what everyone is feeling at all times to be magic. And not just magic, but strange magic. If he learns magic, he’ll be able to understand how people feel.

To us, you neurotypicals are a mystery, and it can only take the power of magic to uncover that mystery. Remember that the next time you look at your autistic child and wonder if you’ll ever truly understand them and what they’re thinking and feeling.

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.

One Gene to Regulate Them All (or, at least many of them)

I have recently written about the complexities of the underlying genetics of autism, including issues of gene regulation. That particular article focused on RNA regulation through methylation. Now there is more evidence for the importance of RNA regulation in Nature. The CPEB-4 protein is involved in the addition of the poly-A tail to mRNAs, and there is a version that specifically regulates this in genes connected to autism.

Each mRNA–which allows the genes for proteins to be turned into those proteins–has a tail of adenosines (one of the nucleotides) added to it after it is transcribed from the DNA. This is important because when the mRNA is translated into a protein, a nucleotide is removed from the end of the RNA. The longer the tail, the more proteins can be made. If only short tails can be produced, there will not be enough proteins produced. CPEB-4 seems to be involved in regulating the length of the poly-A tail.

As already mentioned, things in the cell are complex. In learning more about this gene, I have learned that the protein, cytoplasmic polyadenylation element binding protein, is found in the dendrites and cell body of neurons, but that “treatment of neurons with ionotropic glutamate receptor agonists causes CPEB4 to accumulate in the nucleus. ” Here we again see a gene/protein related to autism connected to glutamate. Stress conditions in the brain–low oxygen or glucose, for example–cause CPEB4 to be sent from the cytoplasm to the nucleus, where they cannot do their job of regulating poly-A in the cytoplasm.

As noted, the CPEB4 gene seems to be central, but that doesn’t mean we should necessarily see mutations in it connected to autism. There could be mutations in the gene(s) for the ionotropic glutamate receptor, or in the gene(s) for glutamate production, or in some other regulator of CPEB4. So while you are bound to find popular articles out there crowing about the fact that there is a “central gene” connected to autism, don’t be mistaken: it’s still a complex situation.

RNA Methylation

People rarely understand just how complex molecular biology really is. People are out there looking for the “autism gene” or “genes,” but have only found a low percentage of people who can be connected to a specific genetic change in a particular protein-producing gene. For many people, that means that environment is likely to be the main cause. However, there are many other factors in molecular biology that will have an effect on cellular outcomes that won’t be connected to a mutation in a protein-producing gene.

There are a variety of other things active inside a cell that affect protein expression and function. DNA can be methylated such that certain genes are turned off. RNA can be methylated as well, which affects translation of mRNA into proteins. The benefits of methylating RNA over DNA is that the cell is able to respond to its environment much more quickly. As the linked article notes, this allows for proteins to be turned on at synapses very far from the neuron’s nucleus. Both forms of methylation are of course a result of a protein or protein complex, meaning there is a gene or set of genes involved in them as well. So it still ends up being genetic–the only thing is that we won’t be looking for direct proteins, but rather proteins involved in these regulatory processes.

Insofar as the numbers of certain proteins in synapses is connected to certain varieties of autism, one should definitely look at regulatory elements in the production of those proteins, the transport of those proteins, the folding of those proteins, and the insertion of those proteins into the membrane when relevant. Those will all involve completely different protein complexes and processes, meaning there are a large number of potential pathways to the same basic outcome.

I think it’s important to learn how the various forms of neurodiversity come about simply because I support any and all basic research. I do think, though, that we need to change people’s attitudes about autism in general as we make these discoveries. It may be–and it’s likely to be–the case that those with such severe autism that they are rendered severely disabled (autism 3) are genetically quite different from the rest (autism 1 and 2), and that there might be a very wide variety of things we’re placing under the “autism” umbrella.

At the same time, it’s clear that my autism 2 son inherited his autism from me, though I’m only autism 1. This suggests either an environmental factor also being in play, or combinations of genes , or both affecting degree. There may be gene combinations which result in autism, so that if for example, you have gene X and gene Y, and mutation x’ and mutation y’, then XY would be neurotypical, X’Y would be neurotypical, XY’ would be neurotypical, and X’Y’ would be autistic, for example. Or there could be certain benefits to X’Y or XY’ for those individuals, yet when they get together and make an X’Y’ autistic child. Or X’Y’ is more sensitive to environmental factors than are the other three combinations, such that in the right environment, even X’Y’ won’t result in autism.

As I said, these things are very complex. Anyone who tells you they have a simple answer to the cause of autism is selling snake oil.