Asperger's Syndrome:
A Working Hypothesis
Please note that my working hypothesis applies mostly to my own children and is, therefore, inherently prone to subjective bias. I do not pretend to be an expert in Asperger's Syndrome. I did not even use the term to describe my own children until fairly recently. I use the term on my website somewhat reluctantly. I have decided to keep it as the title for this page because "kids like mine" doesn't convey much to total strangers surfing the internet, looking for help for kids like theirs. Lots of kids like mine do have a diagnosis of Asperger's Syndrome. However, I have never sought a formal diagnosis for my children and, at this time, I do not intend to do so. Additionally, much of the material here has been pulled from e-mails where I answered specific questions from particular individuals. Such custom replies often translate poorly for a more general audience. As I develop this page further, I hope to make it more accurate and more useful for a general audience. Please be forgiving of the endless flaws inherent in this living, growing body of work.
Take what helps you. Ignore what doesn't.
My oldest son's social life is primarily online at the moment. He and his brother have one close friend who practically moved in with us a couple of years back. They have a few acquaintances who come over occasionally. Once in a while, I try to fix this problem he has of "not having a social life" and he says "I have a social life. I have a lot of friends. They are just online friends." And when I say "But normal people.." he says "Your social life is mostly online. How is that different? Why is this a problem?"
So, here are my thoughts on why I should quit having a problem with him living much as I live and being happy with it even though I, personally, would prefer more face-to-face (local) friends but I am, in fact, basically happy and I am getting my needs met better these days than ever before because I now have a lot of friends, even though they are mostly online friends.
Giftedness l
Personality Type l
Sensory Issues
Compounding (Biomedical) Factors l
Eccentric Geniuses
The Big Disconnect l
Socially Deaf l
Time Blind
Rapid Brain Growth l
Different Minds
1) Giftedness:
He has an extremely high IQ. I also have a high IQ. I am signed onto TAG (talented and gifted) lists and other lists because I cannot find a large group of intelligent people to hang out with and exchange ideas with in my town of 100,000. We discuss this issue constantly on TAG lists: that it is perfectly reasonable and healthy for high IQ kids to travel to the Hollingworth Gifted Child Conference in Boston to see their best friend once a year, whom they "see" by running up long distance phone bills the rest of the year. Since I live with 3 guys with these Aspie issues, it is very clear to me that the higher the IQ, the more appearance of "being aspie" and "having trouble socializing". I feel very, very strongly that when you put them in contact with people they can relate to as equals intellectually, that dramatically improves their ability to socialize -- but this is no different than what other people of very high IQ have to deal with. The more extremely high the IQ, the harder it is to find friends -- and this has nothing to do with 'being Aspie' and everything to do with being 'too smart'.
2) Personality Type:
All three of my 'aspies' happen to be Introverts (but not all are). Introversion is not a 'disorder' that we try to 'treat'. Just as it would be unreasonable and not an improvement of my life to try to make me learn how to enjoy laying at the beach 'working on my tan' for the same length of time as someone with dark skin and would, in fact, damage me, the idea that an introvert should want or need an active social life and is somehow impaired because they don't have one and aren't seeking it out is simply wrong and most people readily understand that. When that introvert also just happens to have aspie traits, their genuine lack of need for the same amount of socializing as an extrovert is seen as a 'disorder' and that is simply wrong. It just so happens that extroverts are the norm that aspies are usually being compared against and found to be 'defective' or 'disordered'. Yet, in the gifted community, extroverts are the minority.
Most gifted people are introverts, even though most people generally are extroverts. This detail is yet another manifestation of statistical norms for high IQ people. Yet, in Aspies, the fact that they are usually extremely intelligent and suffer from the same social issues 'normal' high IQ people suffer from is seen as 'proof' of their 'disorder'. If you first and foremost see them as a very high IQ person who is introverted and simply does not need 5000 friends and cannot relate to most people of more normal intelligence, you will begin to resolve many of their social issues via the same methods that work well for 'normal' people who have both very high IQ's and introversion.
3) Sensory Issues:
Dabrowskian Sensitivities are a hot topic on most tag lists. Additionally, many of the kids on TAG lists are described as having sensory issues or sensory integration disorder. In my view, these are all the exact same issue but to differing degrees on a continuum and there is no clear cut off between 'a normal gifted person with status-y Dabrowskian Sensitivities' and 'a disordered person with Sensory Integration Disorder'. And many of the 'antisocial' behaviors that I see in my family members are often a manifestation of sensory overload. The fact that this difference is not recognized and not accommodated for means that most aspies, most of the time, will be suffering daily from sensory overload and it will make it hard for them to cope and come up with the ability to make nice chit chat in a polite fashion on top of that. So I am completely serious when I compare this to my low tolerance for sunlight. I am being completely dismissed for saying 'Pale Skin Disorder' but if my son's lower tolerance for 'too much noise' and similar is not respected, it is just like if I were to join a nudist colony and go around chronically sunburned. How sociable would I appear if I were chronically sunburned and growling at every person who wanted to hug me, shake hands, or even make nice chit chat???
I was talking to my son last night. After writing so much recently in e-mail about Asperger's, I am beginning to really understand why our lives are so much calmer and easier and functional. My oldest son spends a lot of time in the living room, where he CHOOSES to sleep (and we accommodate that) and he has his desk in the corner. When we had the TV out here, there were constant 'volume wars' and it was a really stressful environment. I removed the TV to the master bedroom some weeks back (our other son also has a TV in his room) and we installed TV software on Emp's computer. He can watch TV if he chooses to but almost never does. There are no more volume wars and the house is extremely calm and quiet. Now that he spends most of his time in a limited area, which is also quiet, he is not constantly experiencing sensory overload, every single day and he no longer does a lot of the antisocial things he used to do. He will talk to you if he needs to talk about something or if you seek him out. If you understand that he is an introvert who does not need to interact with others all the time and actually needs time to himself and he also needs this quiet, controlled environment that does not stress his extreme 'Dabrowskian Sensitivities', his 'bad social skills' have essentially disappeared.
There are therapies for sensory integration issues and those can help a lot. But after those issues have been helped as much as possible, you must also simply respect their low tolerance for some kinds of stimulation and high tolerance for others in the same way that you must respect my low tolerance for sunlight on my pale skin.
4) Compounding (Biomedical) Factors:
The living room and dining room are open to each other and the dining room doubles as my office, where I spend a lot of time. So, Emp and I are actually in the same room together, but at opposite ends, most of the time and actually interact a fair amount throughout the day. He is less introverted than his brother and father. His brother, who has better social skills, interacts with me less than he does. His brother is more introverted and that is the difference. The reason his brother has better social skills is because his brother does not have Face Blindness, CF, and some of the other very real handicaps that Emp has. These additional issues make him appear to be the most aspie person in the house.
But when you know the whole story, it always comes back to 'my skin is sunburned, quit trying to hug me' types of explanations. The medical problems mean he doesn't like to socialize because being around people exposes him to germs and literally makes him get sick. It does the same thing to me but I am an extrovert and, to me, it is worth it, up to a point, to go be with people and put up with coming down with a sore throat because of it. It is not worth it to him because he is an introvert. He is also Face Blind and simply cannot distinguish people well in a crowded situation. It is confusing and stressful and he has trouble knowing with whom he is speaking in such situations and this does NOT support any kind meaningful relating or interacting. How could it possibly improve his quality of life to make him go 'socialize' in a torturous and confusing situation that meets no real need of his because he is an introvert and also because his Face Blindness makes it impossible to relate in a meaningful manner in a group situation where he isn't sure with whom he is speaking and then, afterwards, he will be physically ill for all this 'socializing'?
5) Eccentric Geniuses:
I genuinely, truly, have come to understand a lot of their problems as those of misunderstood, eccentric geniuses and I do not say that as some kind of wishful thinking, not at all. And Temple Grandin says essentially the same thing. If you address their very real needs as people of very high IQ, many of their 'aspie issues' simply cease to exist. Just like with any other person of high IQ, when their intellectual hunger for stimulation is met, they are less difficult to deal with. And just as other high IQ people are easier to deal with when you understand and respect their Dabrowskian Sensitivities, so are my family members. Their Dabrowskian Sensitivities are more extreme but I cannot say this is a disorder anymore than I can say their more extremely high IQ is a disorder and I genuinely believe there is a correlation between the degree of IQ and the degree of sensory issues and it is a 'disorder' only if you think I have 'pale skin disorder' for being 'Too Sensitive' to the sun. Additionally, just as other gifted people have trouble making friends with people of more average intelligence but do not have trouble making friends with people of similar IQ, their social success improves when you do the same things for them that you would do to address the problem with lack of friends that any person of high IQ can and probably does have.
There is anecdotal evidence that Face Blindness occurs dramatically more often in profoundly gifted individuals than in the rest of the population. It is a very rare disorder. But an informal survey of a list for parents of highly or profoundly gifted kids showed that at least 1% of the members either had Face Blindness or had a family member with it. This is a huge percentage for such a rare disorder. My son has told me he does not like to cut his hair because he is face blind and cannot recognize himself in the mirror when his hair changes and this is stressful to him. I am sure I would find that stressful too. He has also told me that in addition to the 'aspie' issue of not wanting to change his clothes because he has trouble with changes in texture on his skin (a sensory issue), he also does not like to change his clothes because he recognizes himself in the mirror more readily if he wears the same shirt all week.
I would like to point out that both Einstein and Mark Twain had remarkably similar, unkempt and uncut hairstyles and also both of them consciously chose an eccentric dress habit of buying several copies of the exact same outfit and dressing identically all the time. They always looked the same. Pictures of them show them in the same outfit all the time, although clean and fairly well-groomed due to having multiple copies. I can readily believe that, like my child, they were both Face Blind and this dictated their appearance: they could recognize themselves in the mirror and, also, not wearing different textures and so on (wearing the same thing every day) did not place stress on their sensory issues. I may yet use the same approach to my son's wardrobe in order to make his life easier and more comfortable for him.
My husband is also Face Blind to some degree, but not completely (Emp can learn faces with enormous repetition) but it rarely matters because he is military and everyone has their name on their uniform. The uniform means he dresses the same at work all the time but it is not viewed as an 'eccentricity' on his part because the army insists he do so. It just happens to be a psychologically comfortable thing for him which other people may not be so happy with. My husband tends to have a very narrow range of styles and colors in his wardrobe. This is something of an eccentricity that gets remarked upon but not to the degree that Mark Twain's or Einstein's wardrobe choices drew attention. But I think it is essentially the same issue but to a somewhat lesser degree.
Face Blindness also impacts social skills in a negative way and it is an 'invisible' handicap that will make someone look 'disordered' socially and in other ways but is not directly about Asperger's because I do not believe all aspies are Face Blind. I am simply pointing out some of the things I know about my family members which seem to fit with what we know about famous eccentric geniuses who seem to have aspie traits as well. This is another instance of: there is something going on here, which is a real issue for them, and which gets interpreted as "that disorder, Asperger's" by onlookers but the interpretation of onlookers is erroneous.
I also wonder if Face Blindness being common in the profoundly gifted range may be partly due to brain damage from malnutrition. Adult-onset Face Blindness is usually due to head trauma. It is very rare in children and, again, anecdotal evidence from tag lists suggests it is associated with difficult pregnancies and traumatic birthing experiences. Face Blindness is a defect or handicap or lack and is associated with a host of other visual problems. But if they are Face Blind or seriously visually impaired in some way and this is impacting their social performance, it is erroneous and harmful to them to misattribute it to asperger's and assume that the very real differences in the way their minds work is some kind of 'disorder' and is, in and of itself, causative of their problems just as you cannot say my pale skin is the sole cause of sunburn. I am not sunburned all the time. I am only sunburned when my low tolerance for exposure to sunlight is not accommodated for and respected as simply a difference in the way my body functions, but not a "defect" or "disorder" per se.
6) The Big Disconnect:
One very real issue they have enormous difficulty coping with effectively is trying to get enough intellectual stimulation without ending up with too much sensory stimulation. I think the high need for intellectual stimulation and the low tolerance for a lot of 'normal' kinds of sensory stimulation is The Big Disconnect that makes life so fundamentally difficult for Aspies. But it is not an irresolvable problem and this is no different from the fact that very high IQ children have difficulty learning to read due to the disconnect between their ability to understand complex material at a high level but here they are sounding out words in children's books and there seems to be no pay off, so they want mom to keep reading to them. There are means to help bridge that gap and there are means to help bridge this one as well. It is a very real problem for them but not fundamentally a disorder.
My husband is far easier to live with now that he is in college and every family member has their own computer and we no longer compete for computer time. He is easier to live with in part because he is no longer 'intellectually starving'. My oldest son, who almost never watches TV, also spends a lot of time at his computer. This is a wonderful means to access all kinds of information, converse with people of similar intelligence, feed his intellectual hunger, and not get too overloaded in a sensory way. And he is also much less 'difficult' these days because he is no longer intellectually starved but simultaneously 'sunburned' (overloaded auditorily or in other ways). And that means he is also better about doing his chores and generally 'acting responsibly'.
7) Socially Deaf:
In addition, Aspies do not learn social skills by 'osmosis'. They need them explained. I think this is somewhat similar to the difference between Thinkers and Feelers and Thinkers are, like introverts, not 'disordered' for being different. If you can explain to them how and why people do x, y, and z, they can act in a socially acceptable fashion and are often far more sensitive and diplomatic about the needs of others than 'normal' people usually are because they do not have a lot of their emotions getting in the way. This is very similar to how Thinkers work and my husband does test high on the Thinker scale while I am Feeler. How can I say his less emotional nature is a 'disorder'?
If you can find a way to explain some of the social stuff which baffles such a person, this is a real problem which can be addressed even though they can't fix it on their own. Why is this any different from my need to have someone explain computers to me when I can't figure it out all on my own? Starting with a Meyers-Briggs profile and using that as a tool to explain a lot of the 'people differences' and 'people issues' has been extremely effective in my household as a logical tool which makes sense for them and which gives us a common language for discussing such ideas. We also just happen to have done Meyers-Briggs profiles of all family members 2 or 3 years ago. It isn't something we have spent a lot of time on but when my kids are experiencing friction, I can speak briefly of their personality type differences and the conflict usually disappears pretty quickly as understanding dawns on them both. Zen Buddhism and/or Philosophy also seem to work better for them than Religion and I believe this is also similar to a thinker/feeler type of dichotomy and not a defect per se.
8) Time Blind:
Their inability to keep track of time internally is a way in which they are different from normal people and it really trips them up in a lot of practical ways. Timers are a huge thing in my home and, after months of tearing my hair out about their inability to realize that they needed to take the trash out just because they put something in it which made it filled to overflowing, Emp decided to set a timer that goes off every 3 hours when he is awake and they do a chore survey when it goes off. I spend a lot less time and energy trying to chase them down and make them do their chores. When I understand that they are 'eccentric geniuses' and some stuff just never occurs to them but they are not simply 'being difficult', it is much easier to find workable solutions to the practical issues this creates. Chores are incredibly boring. Why on earth would they allot any brain power to keeping track of such things?
Einstein had to write his street address down and keep it in his coat pocket. So what? That was a solution that worked for him. His explanation was that his mind was 'thinking great thoughts' and doing these 'thought experiments' which gave us the theory of relativity. He would wander around, looking totally like a space cadet and lost in thought, deeply pondering the mysteries of the universe. When he was finished thinking it through and finally looked up, he had no idea where he had wandered off to nor any idea of how much time had passed. Why is this any different from my son exploring the world via Internet and oblivious to his chores? A timer is a simple and effective means to pull him back to practical matters, which he can take 10 minutes or so to do before going back to his computer to Feed The Beast of his bottomless intellectual hunger. Problem solved. No more frustrated and angry mom or trashed apartment.
9) Rapid Brain Growth and vitamin deficiencies:
The other thing I am utterly convinced of is that the rapid brain growth that research shows they experience actually leaves most of them with vitamin deficiencies, which may have never been redressed, and the difficulties this causes is no different from the difficulties caused by malnourishment and starvation in anyone. I, personally, have witnessed two aspie men get better over the course of many years of being better fed and better cared for by their wives.
I am so sure this is true partly because my oldest son has a medical handicap that interferes with his digestion. He was far more 'aspie' than anyone else in the house when he was younger and, when I did vitamin therapy for him and his brother 7 years ago, he improved a lot more than his brother who does not have this medical disorder. After his medical problem was diagnosed and he began receiving appropriate care, he gained 20 pounds in one year. He was only 103 pounds at the start of that year. It was a very substantial weight gain for him. He is no longer constantly hungry and feeling like he is 'starving' and he is much less symptomatic for Asperger's. Starting several months after he began gaining weight, much of his insecurity and 'leave me alone and stop bothering me' behaviors and so forth simply went away, all on their own, without therapy of any kind.
I am totally convinced this is a big issue for Aspies and if they do not receive vitamin therapy or somehow manage to get adequate nutrition, for whatever reason, while they are young, it takes a long time to remediate this issue. They need good nutrition over a long period of time to heal their bodies and brains to the degree that it is possible to heal them. I believe, from my experience with getting my medical problems finally diagnosed at age 36 and from talking to other people who got life-long medical problems diagnosed well into adulthood and from things I have read, as well as my observations of these two adult Aspies who improved only after several years of consistently being better nourished, that if you set a new and higher standard of nutrition and care and are consistent for 5 to 7 years, you can permanently improve a lot of their issues even after they are adults. It takes the body and brain that long to Fix stuff when it has been denied what it needs for many, many years. And they are much less 'stupid' about stuff when they no longer are suffering horribly from a brain starved of essential vitamins and other nutrients.
10) Different Minds:
The literal thinking and 'thinking in pictures' of my oldest child is something that is simply different and does have social consequences as well as other consequences, some good and some bad. Helping them to understand that this is something different about them and how they are different from other people makes life much easier for them in the same way that understanding that you cannot relate well to people of normal IQ when you have a very high IQ makes life easier for gifted people. Explaining to them that others do not think literally and pointing out when they are being irritating to others due to this trait (like when they feel compelled to list every 'exception' and others think they are just 'being critical' and 'busting my chops' etc) and why this bothers others and that other people do not do this -- but they are not fundamentally 'wrong', they merely think differently -- can dramatically reduce the degree to which they act in socially unacceptable ways. I bought the book 'Thinking in Pictures' for my oldest son and it has completely changed his understanding of himself and how he is different from others. He is a different person for now knowing how he thinks in a different fashion from others and how this causes him to not understand others and not be understood but it is not a 'defect'. He is also more competent, generally, for having this information just as we are all more competent for having done our Meyers-Briggs personality profiles and learning to better understand each other and ourselves.
He is an associative thinker (as defined by Temple Grandin -- which I am told is not the usual defintion for this term). This seems to be 'typical' of Asperger's and does not fit well with the sequential pattern in school and in many work environments. It makes him look scatter-brained and trips him up if you want him to focus on too many different things at once because he cannot separate it all out. I can read several different books, a chapter in this one and a chapter in that one and keep all of it straight in my head. He has problems with that: the different books get jumbled up in his mind and he gets confused. He is much happier and more effective if he can read one book straight through and then move on to the next. This is, again, not a 'defect' but a difference.
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Asperger's Syndrome: A Working Hypothesis
- Giftedness
- Personality Type
- Sensory Issues
- Compounding (Biomedical) Factors
- Eccentric Geniuses
- The Big Disconnect
- Socially Deaf
- Time Blind
- Rapid Brain Growth and Vitamin Deficiencies
- Different Minds
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