My goal in creating this blog is to attempt to share my experiences of a lifetime of having Asperger’s Syndrome (AS). I hope that in some way others with this condition may benefit from this experience. Along the way, I will share much of the current scientific research on AS. I hope that you can find this helpful in your own life. You are not alone. Having AS can be difficult, but also full of joy. It is equally important that those close to you know what having AS means.
Earn Cash Back Here:
My discovery, or perhaps revelation, that I had Asperger’s Syndrome really was part of my own process of wandering. If you get to about the 9th page, I first of all want to congratulate you for sticking with me that far. This page discusses some recent research that shows that Aspie’s have a diminished sense of self. Thus the “Disowned Persona.” I “discovered” that I had Asperger’s when I was 59 years old. For most of my life, at least dating back until I was in my early teens, I can remember thinking to myself, “I was born on the wrong planet.” It was a common theme in my life. Then I read a book, “Crazy Little Thing,” by Liz Langley. Gotta love the subtitle, “Why Love and Sex Drive us Mad.” I do feel that it is extremely important for me to list some extensive quotes from this book. You see, one of the people she interviewed had Asperger’s. So, off I go:
From the preface, location 147:
"So, if you feel alone in your problems with love, please believe me: you’re not. You are not the only one who is confused, frustrated, nervous, or once traded a cow for magic beans and has no idea why you did it. You can look back on thousand-year-old poems and on this week’s Desperate Housewives and see how problems in love haven’t changed and how normal you are to feel nuts. It’s a powerfully alluring madness. Love is the mental illness we all want to have. It does make us crazy.
Now scientists are showing us how.
Psychologists, academics, and analysts of culture continue to offer us better understanding of ourselves in love and other areas, but neurologists and other specialists have taken the game to a higher level. They are holding a new mirror up to us—the brain scan—that shows what chemicals and structures are active when we feel different things, and like Narcissus, we can’t stop staring. I think that neuroscience—the study of the brain, its mechanics, and how its chemistry affects our behavior—is poised to alter, indeed is already altering, the way we think about ourselves as profoundly as Darwinian thinking did. We no longer see depression or addiction simply as character flaws, but as biological and behavioral. What else do we now judge as bad character that will later be found to be the function of wiring or chemistry? How can we judge ourselves for being unable to get over an ex if we know that our brain chemistry is creating an addiction similar to that of a drug user?2 What if we discover that someone we thought was cold and indifferent to us simply has the neurological disorder known as Asperger’s syndrome and just can’t engage socially in certain ways?3 How much of our behavior is really our choice?"3
Notes from above section:
2 Rachael Rettner, “ ‘Romantic Love Is an Addiction,’ Researchers Say,” citing quotes and study by Dr. Helen Fisher, http://www.livescience.com/culture/romantic-rejection-brain-100706html.
3 Interview with Dr. Amy Marsh, October 4, 2010.
I think that it is interesting the connections that occur within the body. There are those who say, "You are what you eat." But it really is much more complex than that. Our bodies are finely tuned machines, evolved to handle a fairly wide range of foods. It turns out, in fact, that around 6 million years ago earth was a fairly warm place with fruit available year round. Our primate ancestors were primarily fruit eaters. But eating all of this fruit would normally cause high blood sugar. The fructose would get stored as fat and these primates would be obese. However, most of these primates lacked the gene for storing fructose as fat. The liver simply flushed the excess sugar from the system. However, a small percentage of these primates DID store fructose as fat. When the climate cooled and fruit was not longer available year around, more of those with this genetic trait survived. We now have a population that still has individuals who do not store fructose as fat. Those people have been shown to be far less likely to be overweight. I now want to refer you to an article regarding the link between alcohol and hypoglycaemia:
https://www.rehab-recovery.co.uk/resources/why-alcohol-causes-hypoglycaemia/
I think that it is interesting because the relationship, like many, is not obvious. In this case, consuming something that has high sugar levels results in a drop in blood sugar because the liver cannot handle the alcohol. And to me, I have to wonder how much of this goes back to that ancient evolutionary trait? Both are the result of how the liver responds to sugar under different conditions and/or different types of sugar. Something to think about the next time you encounter an alcoholic.
Beginning on Page 111 to page 114:
“There were probably quite a few people, and still are, who maybe were thought to be odd or quirky but brilliant, and if they were able to socialize enough to get through college and find jobs that were appropriate to their abilities and interests, they probably did okay, at least in their professional lives,” Dr. Marsh says. The problems, however, might have been in their relationships. “They don’t know why everybody’s upset with them or telling them that they’re inadequate in some way,” and the reason is that they don’t read emotional cues the way most people do. Wondering why someone with AS isn’t responding to you in a conventional way, from what I understand, is a bit like wondering why your cat didn’t bark at the mailman. It’s not what they’re wired to do.8
“The research studies have clearly established that Asperger’s syndrome is due to a dysfunction of specific structures and systems in the brain. In short, the brain is ‘wired’ differently, not necessarily defectively,” writes Tony Attwood in The Complete Guide to Asperger’s Syndrome.9 (Dr. Marsh highly recommends Attwood and his colleague Carol Gray for a positive approach to AS.) Some famous people with Asperger’s include the actor Dan Aykroyd (also a UFO enthusiast), who was diagnosed with a minor case as a child,10 and singer Gary Numan. (Remember the 1979 hit song “Cars”? And now that you do, can you get its addictive synth-pop New Wave riffs out of your head? No. No, you cannot.) Numan once summed it up with this comment: “For years, I couldn’t understand why people thought I was arrogant, but now it all makes a bit more sense.”11
“I like to say they’re sensitive sideways,” Dr. Marsh says, meaning that they’re sensitive, but not to the same things neurotypical (NT) people are. They’re also not clueless, she says; they’re just “not paying attention to the things that the other partner has deemed the appropriate thing to pay attention to. In its own way society—or the social constructions created by neurotypicals—is clueless and narrow and limited as well.”
Here-freaking-here. People put themselves in confined emotional spaces all the time when they want to be accepted in certain work or social capacities. The only difference is, the aspies don’t have a choice as to what their limits are.
Dr. Marsh compares it to middle school. “Just look at how miserable people are, going through middle school and high school. It’s because the social stuff is absolutely so confining and horrible, nobody can stand to be there and everybody’s miserable. We can really feel what it’s like for a person with Asperger’s syndrome if you think back to those days. So that’s an example of how the neurotypical world is actually constructed. It’s not that much fun for a lot of people; it’s super difficult for others.”
In an article on Asperger’s in the UK Independent Dr. Simon Baron-Cohen is quoted as saying, “Passion, falling in love and standing up for justice are all perfectly compatible with Asperger’s syndrome. What most people with AS find difficult is casual chatting—they can’t do small talk.”13
Notes from above section:
8 Telephone conversation with Dr. Amy Marsh, October 5, 2010.
9 Tony Attwood, The Complete Guide to Asperger’s Syndrome, Jessica Kingsley Publishers, 2008.
10 Emine Saner, “Soul Survivor,” Guardian (UK), September 17, 2007, http://www.guardian.co.uk/film/2007/sep/19/1.
11 Quoted in Andrew Buncombe, “Asperger’s Syndrome: The ballad of Nikki Bacharach,” Independent (UK), January 8, 2007, http://www.independent.co.uk/news/world/americas/aspergers-syndrome-the-ballad-of-nikki-bacharach-431201.html
12 Dr. Mandy Roy, Dr. Wolfgang Dillo, Dr. Hinderk M. Emrich, and Dr. Martin D. Ohlmeier, “Asperger’s Syndrome in Adulthood,” Deutsches Ärtzeblatt International, January 2009, http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2695286/."
13 Quoted in Andrew Buncombe, “Asperger’s Syndrome: The ballad of Nikki Bacharach,” Independent (UK), January 8, 2007, http://www.independent.co.uk/news/world/americas/aspergers-syndrome-the-ballad-of-nikki-bacharach-431201.html.
If Arthur did indeed have Asperger’s, this means that Lynette Horn was actually very intuitive in understanding that he often just needed to be approached differently than a typical person. Dr. Marsh says that very explicit communication, an adjustment of expectations, and thinking strategically are good approaches because a person with AS is “not going to have an easy time with spontaneous emotional requirements.”
Interestingly, she says that relationships built on BDSM (the acronym refers to bondage and discipline, dominance and submission, sadism and masochism) can provide good communication models for people in an AS relationship. BDSM relationships require explicit communication for partners to tell each other exactly what they want, need, don’t want—what their limits are. “I think all kinds of relationships can benefit from that up-front precision,” Dr. Marsh says. It could get boring if you had to do it all the time, she says, but a few rules and a lot of talk could be productive in some ways.
Part of the reason communication is so important is that people can be reluctant to engage in it. We’ll have sex with people but we don’t want to talk to them about having sex with them: talking can feel more intimate than sex. I asked Dr. Marsh if she had any talking points for lovers, whatever their relationship may be.
“If it’s an Asperger’s person talking to a partner, they’re going to be blunt, because that’s the way they are,” she says. It won’t occur to them that someone’s feelings might get hurt. NT people can be really matter-of-fact about it too, but if one partner feels he’s done all he can and he still can’t make his partner happy, that kind of impasse could cause a blowup.
But to communicate things about yourself you first have to know what those things are, and this takes a great deal of self-awareness, especially on the part of the aspie partner. Unless you were lucky enough to have been diagnosed in childhood and worked with therapists to help you integrate certain issues into mainstream life, it can be very difficult, Dr. Marsh says. That’s why it’s important to consider AS a potential issue in certain relationships. If this is truly appropriate, the AS person can be empowered by a diagnosis and can begin to understand the benefits and the challenges of the condition: “Okay, this is a real thing. I’m not just hopelessly incompatible with everybody.”
Dr. Marsh uses the example of sensory dysfunction, which can manifest as an inability to stand certain textures, sounds, tastes, or ways of being touched, a problem that can affect some people with AS. If they can’t stand, for example, a slippery texture, oral sex might be a problem for them. For the other partner to understand that it’s not them the aspie partner has to be able to articulate that their partner’s body is not the problem; it’s that they can’t process slippery textures of any kind. That way, Dr. Marsh says, the NT partner will at least be informed about what they’re dealing with.
No matter how diplomatic you are, “I so can’t go down on you” could be a tough thing for the partner to hear. Dr. Marsh recommends a technique called the “sandwich”—you say one nice thing, then suggest a change in the middle, then say something else nice in order to soften your request or criticism. Who in the world couldn’t use that one, and not just in bed?"
Sexual communication is one thing, but emotional communication is a different kind of intimacy. Some aspie lovers can be totally focused on their partner for a certain amount of time—but when they’re back into their interests they’re really back into their interests.
Dr. Marsh says, “Probably the most enlightening thing that a former partner said to me—a man who was probably very capable of getting an AS diagnosis—was ‘I have a limited capacity for emotional engagement.’ And though it took me a while to learn this, I found that if I gave him time to transition incrementally from being on the computer to interacting with me, eventually he would be very present, intimate, and emotional with me. But soon enough he would need the interaction to be over, and I couldn’t expect anything warm and fuzzy past that point. It was almost like saying, ‘Till next time.’”
Considering their social awkwardness and limited emotional engagement (depending on where they are in the AS spectrum), how do they meet people and get into relationships in the first place?
Dr. Marsh refers to Temple Grandin, who has AS and also has a PhD in animal science and teaches at Colorado State. Her story was made into a feature film, Temple Grandin, starring Claire Danes.
“One of the things I really love is where Temple Grandin describes in one of her books how as a kid growing up in the ’50s she and her friends would make things together. They’d make kites and forts, and this is how they’d bond and play. When adolescence came along, there was this divergence between what she calls the project people like herself and people who were suddenly going for social interactions. So, you might have a couple who meet around a project or a shared interest and maybe one is an aspie and one isn’t, but they can create these bonds by sharing their special interests. I think those are the people who are likely to end up with aspie partners: the people who were creative and quirky anyway. They meet someone else who shares their interest and that becomes an overriding joy.”
An NT person and an aspie person can grow together in an interest, but, as Dr. Marsh says about her own former partner, the NT person should probably be prepared for the aspie’s romantic and sexual attentions to be confined to a certain time and space.
“It hurts that affection should be compartmentalized like that, but on the other hand the outcome is really positive. My sense is that people with Asperger’s syndrome are looking for some kind of semiformal structure, as in BDSM relationships or Tantra or a very traditional Christian marriage, where the parameters and the rules are well spelled out and there’s less need for spontaneous action, which can be excruciating for the AS person.
“Here in the US and in Western culture we place a heavy value on our lover being able to read our mind and know intuitively when we’re sad. We want someone who can come up with special surprises; we think a really good lover is one who is good at these spontaneous shows of affection. There must be cultures where this is not valued as much.” Perhaps where there is more value placed on being steadfast, being a good provider.
And indeed, the expectation to be Prince Charming or Cinderella as well as being ambitious, attractive, available, and a good mind reader—it’s confining. Who is all that? Who could be?"
From Page 120 to 121:
THEY’RE EMBRACING IT IN YOU WHEN YOU CAN’T SEE IT
So, being specific about what’s going on in the relationship is a big help with an aspie partner, and Lynette Horn was pretty prescient in realizing that Arthur required an alternative approach before she had even heard of Asperger’s, or learned that he might have Asperger’s, in 2009. Their relationship grew increasingly better in the year before his passing.
“So here we are, and our love is growing, especially our lovemaking, which went to a whole other level. He’s sixty-seven years old—this is not supposed to be happening! But it’s getting richer and better and of course it’s making him feel like the great stud that he is, having this amazing magical time on all these levels,” Lynette says.15
Having her husband taken from her so suddenly devastated Lynette, and the fact that her circumstances are reduced in every way makes her resilience that much more impressive. The Horns didn’t have much money, and three other family members of Lynette’s had also died in the months before we spoke. She isn’t sticking by her spiritual truth from a palatial home or TV studio; she’s doing it from between a rock and a hard place.
Rumi, the Persian poet whose ecstatic twirling inspired the whirling dervishes, wrote this verse about ecstatic love:
You miracle seekers are always wanting signs. So, where are they?
Go to bed crying and wake up the same. Plead for what doesn’t come Until it darkens your days.
Giving away everything, even your mind, sit down in the fire, wanting to become ashes, and when you meet with a sword, throw yourself on it.
Fall into the habit of such helpless, mad things—
You will have your sign.16
When you find yourself in what Lynette calls “the meat grinder,” when you’re at your lowest, she says, “You find the place inside yourself where you feel the love, that only the divine I think, can provide.”
What is the divine?
She says it is spiritual connection with higher teachings and truth. “Your teachers, your friends, the men in your life, the women in your life—they all validate it, because they’re embracing it in you when you can’t see it. They embrace that profound place of love they have for you, and you can only live it when things keep hitting you and hitting you. And by that happening, it’s a place of ecstasy, I swear to God.”
Embracing the beauty in someone when they can’t see it themselves is as satisfying an answer to “What is love?” as I can imagine.
Notes from the above section:
15 Telephone conversation with Lynette Horn, June 12, 2010.
16 Quoted in Deepak Chopra, Muhammad: A Story of the Last Prophet (HarperOne, 2010), 265.
From Page 233:
Erika suffered sexual abuse and abandonment as a child, but not all survivors of abuse turn to objects. Dr. Amy Marsh noted in Discover magazine, having studied people with OS, “What I’m finding is not much history of sexual abuse, and actually not much in the way of psychiatric diagnoses either. I’m finding they’re very happy, and they don’t want to change. I am also finding out that quite a few of them have a diagnosis of Asperger’s syndrome or autism.”22
When I ask Erika whether she had any experiences that she believes shaped her romantic feelings about objects, she doesn’t focus on her personal past, but on why people with OS choose particular objects on which to bestow their affection. “I do often wonder why I have a particular fondness for certain objects, while others in the community vary with theirs. It is possible that my love for bridges stems from a yearning to connect to things I otherwise could not reach. I also find that many of my deepest and longest loves are objects that were disrespected or mistreated. I am very sensitive to objects that need help and love.
Note from above section:
22 “The End of Divorce? Growing Numbers of People Marrying Inanimate Objects,” Discover, April 13, 2009, http://blogs.discovermagazine.com/discoblog/2009/04/13/the-end-of-divorce-growing-numbers-of-people-marrying-inanimate-objects/
From Page 234 to 235:
There are two schools of thought in the OS community on the question of consciousness, Erika writes. First there is the animist OS, who is captivated by the spiritual nature of the object and who usually has a functioning social life that would be upset by the revelation of his or her relationship with objects. The other group consists of those who have Asperger’s syndrome or high-functioning autism. “These Asperger’s OS connect to very particular objects, creating a comfort zone which they are averse to changing. From this group comes more willingness to speak openly, as there is a strong obsessive compulsion to anything relating to their object of interest.”
Erika is an animist and senses energy in objects. “Not all,” she writes, “but ones in particular that I seem to resonate with. We all have antennas but we clearly do not pick up the same channels. It is a case of wiring. Most do not need to hear objects because your antennas are tuned for people. Objects simply serve their purpose and you see them merely in this light.
FYI, if you find this section somewhat dry, please skip it, you can come back to it later. But hopefully, you will find this blog helpful and informative. It is primarily about my experiences with Asperger’s Syndrome (AKA High Functioning Autism) and the problems it has caused in my life. Even there, it is really hard to explain what the problems are. I felt that it was best to simply provide what I consider to be a highly informative research article from the MIT Technology Review, dated February 7, 2008 and titled, “Brain Signal Linked to Autism.” It might more appropriately be called, “Lack of Brain Signal Linked to Autism:”
By imaging the brains of adolescents with a high-functioning form of autism as they played a social-interaction game, scientists have identified a physiological deficit specific to the disorder. The researchers believe that the change is linked to a diminished sense of self. The findings, recently published in the journal Neuron, could help guide future research into the nature of autism and potentially lead to new ways to diagnose and treat the disorder.
“I think this is an exciting advance,” says Uta Frith, a professor at University College London, in England, who wrote a preview of the paper for Neuron. Most studies find only subtle differences in people with high-functioning autism, “so it’s quite impressive to find such a big difference,” she says.
Autism is a complicated and heterogeneous developmental disorder marked by problems in language and social behavior. No medical tests exist to detect the disorder, so children are typically diagnosed based on doctors’ observations. Scientists are avidly searching for more objective markers of autism, but identifying specific brain abnormalities has been a challenge.
Researchers at Baylor College of Medicine, in Houston, believe that they have now identified a specific physiological marker of the disorder. Read Montague, Pearl Chiu, and their colleagues scanned the brains of adolescents with Asperger’s syndrome, a high-functioning form of autism, while they played an interactive trust game.
In the game, one person, designated the investor, chooses an amount of money to send to a second player, the trustee. The money is tripled en route, and the trustee must then decide how much to give back to the investor. When played by normal volunteers, the game unfolds in a very characteristic fashion: generous gestures are met with generous responses, while selfish ones inspire selfishness in return.
Brain activity also follows a stereotyped pattern. A study by Montague and his colleagues. published in 2006, imaged the brains of both the investor and the trustee as they played the game. The researchers discovered a specific signal in the cingulate cortex, part of the brain that integrates information from both the cortex and the body, that was detected only when the investor thought about how much money to give the trustee. A second signal was seen only when the investor received his or her return from the trustee. “We see a ‘self, other, self, other’ pattern,” says Montague, director of the Human Neuroimaging Lab at Baylor. “We think that’s an unconscious assessment of who the actions should be attributed to.”
According to the new findings, people with Asperger’s play the game just as a nonautistic person would, but they lack the characteristic “self” signal in the brain. Normal people lack the signal only when they think that they are playing against a computer, suggesting that autistic people view interactions with other people similarly to the way that normal people think about interacting with a computer. “This approach allows a somewhat objective look at something hopelessly subjective–sense of self,” says John Gabrieli, a neuroscientist at MIT.
While the findings are clearly intriguing, it’s not yet clear what they mean. One popular theory of autism is that people with the disorder lack a normal theory of mind–the ability to imagine the thoughts and actions of others. Identifying a specific deficit linked to thoughts of self could help narrow down what has gone wrong in that process. “People think autism is linked to a lack of understanding of what a partner is doing,” says Chiu. “But maybe they don’t understand their own role in the social exchange.”
Other scientists interpret the results further, suggesting that this signal is linked to a sort of internal reputation assessment in the brain. “If you are a normal person, when you invest money in the game, you are thinking about how you will look in the eyes of your partner,” says Frith. “That’s precisely what the theory of mind hypothesis would project is wrong with people with autism.”
Other autism experts are unwilling to make such a leap. “I’m skeptical about how much [the Baylor College study] tells us about which capacities are intact and engaged in autism,” says Matthew Belmonte, a scientist at Cornell University, in Ithaca, NY. “I’m not convinced they have a deficit at all. Maybe they have adopted a different cognitive strategy.”
Regardless of the deeper meaning of their findings, Montague and his team ultimately hope to develop the brain-imaging results into a diagnostic test. They have converted the activity signal from the cingulate cortex into a simple numerical score, which correlates well with a clinical test for the severity of autism. Eventually, they hope to be able to show, for example, “that if you get a 3 rather than a 14, you are 80 percent more likely to be a high-functioning autistic,” says Montague. Such a tool could potentially also be used to test the effectiveness of new behavioral treatments, he says.
However, much work remains to be done before such a test could be used in a doctor’s office. “We need to make it simpler and test people with a wider range of IQs,” says Montague. The Asperger’s volunteers in the current study had an above-average IQ.
I have kept the links intact in order to allow the readers to easily connect to the authors and sources.
Some other noteworthy research related to Asperger’s:
Wikipedia Article, “Autism and working memory:”
A majority of the research has found that individuals with autism perform poorly on measures of executive function. A general decrease in working memory (WM) is one of the limitations, although some studies have found that working memory is not impaired in autistic children relative to controls matched for IQ.
From WebMD:
MRI Scans May Help Evaluate Asperger’s Syndrome
Researchers Use Advanced MRI Scans to Analyze Brain Activity of People With Asperger’s
If Arthur did indeed have Asperger’s, this means that Lynette Horn was actually very intuitive in understanding that he often just needed to be approached differently than a typical person. Dr. Marsh says that very explicit communication, an adjustment of expectations, and thinking strategically are good approaches because a person with AS is “not going to have an easy time with spontaneous emotional requirements.”
Interestingly, she says that relationships built on BDSM (the acronym refers to bondage and discipline, dominance and submission, sadism and masochism) can provide good communication models for people in an AS relationship. BDSM relationships require explicit communication for partners to tell each other exactly what they want, need, don’t want—what their limits are. “I think all kinds of relationships can benefit from that up-front precision,” Dr. Marsh says. It could get boring if you had to do it all the time, she says, but a few rules and a lot of talk could be productive in some ways.
Part of the reason communication is so important is that people can be reluctant to engage in it. We’ll have sex with people but we don’t want to talk to them about having sex with them: talking can feel more intimate than sex. I asked Dr. Marsh if she had any talking points for lovers, whatever their relationship may be.
“If it’s an Asperger’s person talking to a partner, they’re going to be blunt, because that’s the way they are,” she says. It won’t occur to them that someone’s feelings might get hurt. NT people can be really matter-of-fact about it too, but if one partner feels he’s done all he can and he still can’t make his partner happy, that kind of impasse could cause a blowup.
But to communicate things about yourself you first have to know what those things are, and this takes a great deal of self-awareness, especially on the part of the aspie partner. Unless you were lucky enough to have been diagnosed in childhood and worked with therapists to help you integrate certain issues into mainstream life, it can be very difficult, Dr. Marsh says. That’s why it’s important to consider AS a potential issue in certain relationships. If this is truly appropriate, the AS person can be empowered by a diagnosis and can begin to understand the benefits and the challenges of the condition: “Okay, this is a real thing. I’m not just hopelessly incompatible with everybody.”
Dr. Marsh uses the example of sensory dysfunction, which can manifest as an inability to stand certain textures, sounds, tastes, or ways of being touched, a problem that can affect some people with AS. If they can’t stand, for example, a slippery texture, oral sex might be a problem for them. For the other partner to understand that it’s not them the aspie partner has to be able to articulate that their partner’s body is not the problem; it’s that they can’t process slippery textures of any kind. That way, Dr. Marsh says, the NT partner will at least be informed about what they’re dealing with.
No matter how diplomatic you are, “I so can’t go down on you” could be a tough thing for the partner to hear. Dr. Marsh recommends a technique called the “sandwich”—you say one nice thing, then suggest a change in the middle, then say something else nice in order to soften your request or criticism. Who in the world couldn’t use that one, and not just in bed?"
Sexual communication is one thing, but emotional communication is a different kind of intimacy. Some aspie lovers can be totally focused on their partner for a certain amount of time—but when they’re back into their interests they’re really back into their interests.
Dr. Marsh says, “Probably the most enlightening thing that a former partner said to me—a man who was probably very capable of getting an AS diagnosis—was ‘I have a limited capacity for emotional engagement.’ And though it took me a while to learn this, I found that if I gave him time to transition incrementally from being on the computer to interacting with me, eventually he would be very present, intimate, and emotional with me. But soon enough he would need the interaction to be over, and I couldn’t expect anything warm and fuzzy past that point. It was almost like saying, ‘Till next time.’”
Considering their social awkwardness and limited emotional engagement (depending on where they are in the AS spectrum), how do they meet people and get into relationships in the first place?
Dr. Marsh refers to Temple Grandin, who has AS and also has a PhD in animal science and teaches at Colorado State. Her story was made into a feature film, Temple Grandin, starring Claire Danes.
“One of the things I really love is where Temple Grandin describes in one of her books how as a kid growing up in the ’50s she and her friends would make things together. They’d make kites and forts, and this is how they’d bond and play. When adolescence came along, there was this divergence between what she calls the project people like herself and people who were suddenly going for social interactions. So, you might have a couple who meet around a project or a shared interest and maybe one is an aspie and one isn’t, but they can create these bonds by sharing their special interests. I think those are the people who are likely to end up with aspie partners: the people who were creative and quirky anyway. They meet someone else who shares their interest and that becomes an overriding joy.”
An NT person and an aspie person can grow together in an interest, but, as Dr. Marsh says about her own former partner, the NT person should probably be prepared for the aspie’s romantic and sexual attentions to be confined to a certain time and space.
“It hurts that affection should be compartmentalized like that, but on the other hand the outcome is really positive. My sense is that people with Asperger’s syndrome are looking for some kind of semiformal structure, as in BDSM relationships or Tantra or a very traditional Christian marriage, where the parameters and the rules are well spelled out and there’s less need for spontaneous action, which can be excruciating for the AS person.
“Here in the US and in Western culture we place a heavy value on our lover being able to read our mind and know intuitively when we’re sad. We want someone who can come up with special surprises; we think a really good lover is one who is good at these spontaneous shows of affection. There must be cultures where this is not valued as much.” Perhaps where there is more value placed on being steadfast, being a good provider.
And indeed, the expectation to be Prince Charming or Cinderella as well as being ambitious, attractive, available, and a good mind reader—it’s confining. Who is all that? Who could be?"
From Page 120 to 121:
THEY’RE EMBRACING IT IN YOU WHEN YOU CAN’T SEE IT
So, being specific about what’s going on in the relationship is a big help with an aspie partner, and Lynette Horn was pretty prescient in realizing that Arthur required an alternative approach before she had even heard of Asperger’s, or learned that he might have Asperger’s, in 2009. Their relationship grew increasingly better in the year before his passing.
“So here we are, and our love is growing, especially our lovemaking, which went to a whole other level. He’s sixty-seven years old—this is not supposed to be happening! But it’s getting richer and better and of course it’s making him feel like the great stud that he is, having this amazing magical time on all these levels,” Lynette says.15
Having her husband taken from her so suddenly devastated Lynette, and the fact that her circumstances are reduced in every way makes her resilience that much more impressive. The Horns didn’t have much money, and three other family members of Lynette’s had also died in the months before we spoke. She isn’t sticking by her spiritual truth from a palatial home or TV studio; she’s doing it from between a rock and a hard place.
Rumi, the Persian poet whose ecstatic twirling inspired the whirling dervishes, wrote this verse about ecstatic love:
You miracle seekers are always wanting signs. So, where are they?
Go to bed crying and wake up the same. Plead for what doesn’t come Until it darkens your days.
Giving away everything, even your mind, sit down in the fire, wanting to become ashes, and when you meet with a sword, throw yourself on it.
Fall into the habit of such helpless, mad things—
You will have your sign.16
When you find yourself in what Lynette calls “the meat grinder,” when you’re at your lowest, she says, “You find the place inside yourself where you feel the love, that only the divine I think, can provide.”
What is the divine?
She says it is spiritual connection with higher teachings and truth. “Your teachers, your friends, the men in your life, the women in your life—they all validate it, because they’re embracing it in you when you can’t see it. They embrace that profound place of love they have for you, and you can only live it when things keep hitting you and hitting you. And by that happening, it’s a place of ecstasy, I swear to God.”
Embracing the beauty in someone when they can’t see it themselves is as satisfying an answer to “What is love?” as I can imagine.
Notes from the above section:
15 Telephone conversation with Lynette Horn, June 12, 2010.
16 Quoted in Deepak Chopra, Muhammad: A Story of the Last Prophet (HarperOne, 2010), 265.
From Page 233:
Erika suffered sexual abuse and abandonment as a child, but not all survivors of abuse turn to objects. Dr. Amy Marsh noted in Discover magazine, having studied people with OS, “What I’m finding is not much history of sexual abuse, and actually not much in the way of psychiatric diagnoses either. I’m finding they’re very happy, and they don’t want to change. I am also finding out that quite a few of them have a diagnosis of Asperger’s syndrome or autism.”22
When I ask Erika whether she had any experiences that she believes shaped her romantic feelings about objects, she doesn’t focus on her personal past, but on why people with OS choose particular objects on which to bestow their affection. “I do often wonder why I have a particular fondness for certain objects, while others in the community vary with theirs. It is possible that my love for bridges stems from a yearning to connect to things I otherwise could not reach. I also find that many of my deepest and longest loves are objects that were disrespected or mistreated. I am very sensitive to objects that need help and love.
Note from above section:
22 “The End of Divorce? Growing Numbers of People Marrying Inanimate Objects,” Discover, April 13, 2009, http://blogs.discovermagazine.com/discoblog/2009/04/13/the-end-of-divorce-growing-numbers-of-people-marrying-inanimate-objects/
From Page 234 to 235:
There are two schools of thought in the OS community on the question of consciousness, Erika writes. First there is the animist OS, who is captivated by the spiritual nature of the object and who usually has a functioning social life that would be upset by the revelation of his or her relationship with objects. The other group consists of those who have Asperger’s syndrome or high-functioning autism. “These Asperger’s OS connect to very particular objects, creating a comfort zone which they are averse to changing. From this group comes more willingness to speak openly, as there is a strong obsessive compulsion to anything relating to their object of interest.”
Erika is an animist and senses energy in objects. “Not all,” she writes, “but ones in particular that I seem to resonate with. We all have antennas but we clearly do not pick up the same channels. It is a case of wiring. Most do not need to hear objects because your antennas are tuned for people. Objects simply serve their purpose and you see them merely in this light.
FYI, if you find this section somewhat dry, please skip it, you can come back to it later. But hopefully, you will find this blog helpful and informative. It is primarily about my experiences with Asperger’s Syndrome (AKA High Functioning Autism) and the problems it has caused in my life. Even there, it is really hard to explain what the problems are. I felt that it was best to simply provide what I consider to be a highly informative research article from the MIT Technology Review, dated February 7, 2008 and titled, “Brain Signal Linked to Autism.” It might more appropriately be called, “Lack of Brain Signal Linked to Autism:”
By imaging the brains of adolescents with a high-functioning form of autism as they played a social-interaction game, scientists have identified a physiological deficit specific to the disorder. The researchers believe that the change is linked to a diminished sense of self. The findings, recently published in the journal Neuron, could help guide future research into the nature of autism and potentially lead to new ways to diagnose and treat the disorder.
“I think this is an exciting advance,” says Uta Frith, a professor at University College London, in England, who wrote a preview of the paper for Neuron. Most studies find only subtle differences in people with high-functioning autism, “so it’s quite impressive to find such a big difference,” she says.
Autism is a complicated and heterogeneous developmental disorder marked by problems in language and social behavior. No medical tests exist to detect the disorder, so children are typically diagnosed based on doctors’ observations. Scientists are avidly searching for more objective markers of autism, but identifying specific brain abnormalities has been a challenge.
Researchers at Baylor College of Medicine, in Houston, believe that they have now identified a specific physiological marker of the disorder. Read Montague, Pearl Chiu, and their colleagues scanned the brains of adolescents with Asperger’s syndrome, a high-functioning form of autism, while they played an interactive trust game.
In the game, one person, designated the investor, chooses an amount of money to send to a second player, the trustee. The money is tripled en route, and the trustee must then decide how much to give back to the investor. When played by normal volunteers, the game unfolds in a very characteristic fashion: generous gestures are met with generous responses, while selfish ones inspire selfishness in return.
Brain activity also follows a stereotyped pattern. A study by Montague and his colleagues. published in 2006, imaged the brains of both the investor and the trustee as they played the game. The researchers discovered a specific signal in the cingulate cortex, part of the brain that integrates information from both the cortex and the body, that was detected only when the investor thought about how much money to give the trustee. A second signal was seen only when the investor received his or her return from the trustee. “We see a ‘self, other, self, other’ pattern,” says Montague, director of the Human Neuroimaging Lab at Baylor. “We think that’s an unconscious assessment of who the actions should be attributed to.”
According to the new findings, people with Asperger’s play the game just as a nonautistic person would, but they lack the characteristic “self” signal in the brain. Normal people lack the signal only when they think that they are playing against a computer, suggesting that autistic people view interactions with other people similarly to the way that normal people think about interacting with a computer. “This approach allows a somewhat objective look at something hopelessly subjective–sense of self,” says John Gabrieli, a neuroscientist at MIT.
While the findings are clearly intriguing, it’s not yet clear what they mean. One popular theory of autism is that people with the disorder lack a normal theory of mind–the ability to imagine the thoughts and actions of others. Identifying a specific deficit linked to thoughts of self could help narrow down what has gone wrong in that process. “People think autism is linked to a lack of understanding of what a partner is doing,” says Chiu. “But maybe they don’t understand their own role in the social exchange.”
Other scientists interpret the results further, suggesting that this signal is linked to a sort of internal reputation assessment in the brain. “If you are a normal person, when you invest money in the game, you are thinking about how you will look in the eyes of your partner,” says Frith. “That’s precisely what the theory of mind hypothesis would project is wrong with people with autism.”
Other autism experts are unwilling to make such a leap. “I’m skeptical about how much [the Baylor College study] tells us about which capacities are intact and engaged in autism,” says Matthew Belmonte, a scientist at Cornell University, in Ithaca, NY. “I’m not convinced they have a deficit at all. Maybe they have adopted a different cognitive strategy.”
Regardless of the deeper meaning of their findings, Montague and his team ultimately hope to develop the brain-imaging results into a diagnostic test. They have converted the activity signal from the cingulate cortex into a simple numerical score, which correlates well with a clinical test for the severity of autism. Eventually, they hope to be able to show, for example, “that if you get a 3 rather than a 14, you are 80 percent more likely to be a high-functioning autistic,” says Montague. Such a tool could potentially also be used to test the effectiveness of new behavioral treatments, he says.
However, much work remains to be done before such a test could be used in a doctor’s office. “We need to make it simpler and test people with a wider range of IQs,” says Montague. The Asperger’s volunteers in the current study had an above-average IQ.
I have kept the links intact in order to allow the readers to easily connect to the authors and sources.
Some other noteworthy research related to Asperger’s:
Dec. 6, 2010 (Chicago) -- Researchers are a step closer to developing new treatments that are tailored to the individual needs of people with Asperger’s syndrome and other types of autism.
The technique uses two advanced MRI scanning techniques to produce a detailed map of the brain’s wiring in six regions responsible for language, social, and emotional function.
The work is very preliminary. But the hope is that the approach will also lead to an imaging test that may help to diagnose autism, says Sophia Muller, MD, a radiologist at the University of Munich, Germany.
"The method could also potentially be used to evaluate whether drugs are working," she tells WebMD.
Symptoms of Asperger's Syndrome
Asperger's syndrome (AS) is one of two main types of autism that often goes unrecognized until late in childhood or even adulthood.
People with Asperger's syndrome often find themselves somewhat disconnected from others. Some people with Asperger's syndrome obsess over unusual things, and communication can be a great challenge. People with AS generally have difficulty interacting with others and often are awkward in social situations.
Currently, AS and other types of autism are typically diagnosed through observations, along with educational and psychological testing. There are no medications to cure Asperger's syndrome, although drugs may be used to treat specific symptoms, such as anxiety, depression, hyperactivity, and obsessive-compulsive behavior.
If the new findings hold up in larger studies, the sophisticated imaging scans can be used to pinpoint disturbed brain wiring and activity in people with Asperger's and other types of autism, thereby aiding in the diagnosis, Muller says. Drugs that target those brain regions can also be developed, she says.
The new test is not the only test in development for Asperger's syndrome or other types of autism. Blood and urine tests are also being looked at in the U.S. and abroad, along with MRI scans that may help diagnose autism.
Analyzing Results of MRI Scans
For the new study, Muller and colleagues used functional magnetic resonance imaging (functional MRI) and diffusion MRI to study six major networks in the brains of 12 people with Asperger's and 12 people with no cognitive problems.
Functional MRI allows doctors to look at how blood flow increases in response to brain activity. Diffusion MRI, also known as diffuse tensor imaging (DTI), is used to look at connections between brain cells, thereby providing a road map of the brain.
The average age of the people with AS was 36 and the average age of the cognitively healthy people was 33. All underwent the imaging scans while they were resting, with their eyes closed.
Results of the scanning tests "provide the first links of disturbed functional connectivity patterns that are reasonably associated to the core behavioral problems of patients with Asperger’s syndrome," Muller says.
She presented the study here today at the annual meeting of the Radiological Society of North America.
Tracking Brain Activity in Asperger’s Patients
Results of the functional and diffusion MRI scans showed that compared with people with no cognitive problems, people with Asperger's syndrome:
There was no difference in activity in the visual and auditory brain regions between the two groups. "This suggests that symptoms are not caused by altered perception of visual and auditory stimuli but by aberrant processing of sensory information," Muller says.
Robert Zimmerman, MD, professor of radiology at Weill-Cornell Medical Center in New York City, says that while the study is small, "it is starting to give us a better understanding of the brain, how it works differently in Asperger's and in [cognitively] normal people."
The increased activity in the attention network and the decreased activity in some other major brain areas may account for the fact the "people with Asperger's syndrome exhibit hyper-concentration but at the same time are easily distracted and can’t focus," he tells WebMD.
This study was presented at a medical conference. The findings should be considered preliminary as they have not yet undergone the "peer review" process, in which outside experts scrutinize the data prior to publication in a medical journal.
Almost done…
We just sent you an email. Please click the link in the email to confirm your subscription!