This is a very personal story of struggle and triumph and disappointment all rolled in together. It is essentially an attempt to both shed some light and perhaps offer some hope to the parents of children diagnosed with high functioning autism spectrum disorders and to adults living with this disorder or who believe they may be. For the record, I am not a psychologist, sociologist, nor healthcare professional of any kind. My knowledge comes from a lifetime living with this condition, a period of intense independent study, and observations of my own child who is also on the autism spectrum.
Some of the information here you will probably not find anywhere else, you won't hear it from psychologists nor school officials. These are some of the details that come from my own internal perspective. Things that may seem like a mystery to an observer, but will likely seem rather natural to those of us with the condition.
At this point, I could go into a long winded clinical type discussion of what Autism and it's related conditions are and delve into a lot of highly technical detail, but that is not my purpose. My intention here is to tell you what my life is like, what life is like for those of us with the condition.
For those in despair, perhaps you will come away with a little less aprehension. But primarily I target this for those who want to better understand what their loved ones are going through and how to deal with it.
My story is inextricably linked with that of my daughter who was identified as possibly on the autism spectrum three years ago. It was at this time that I learned of my own diagnosis nearly 40 years earlier.
Three years ago (at the age of three) my daughter was suspected of autsim and placed in the early intervention program in the Cherry Creek school district in Colorado. At that age, it's rare to receive a diagnosis, they usually want to wait until the child is a little older to make the determiation. This year, at age six, my daughter was formally classified with Autism Spectrum Disorder. It was the end of a three year period of limbo which finally gave us some closure.
Sofia's language development seemed to begin normally enough, in that at the age of about 14-18 months she had begun to show some understanding of language. We were able to teach her to point to her nose, arms, head etc when we uttered the words. But by age two she no longer was able to do this, and by age three she still did not have a single word of vocabulary.
We knew something was wrong and eventually found ourselves at the Cherry Creek Childfind office at the recommendation of our pediatrician. Then came the bombshell, they suspected autism. What followed was a series of phases; shock, denial, grief, and finally acceptance, etc.
This was traumatic for both my wife and myself, but I was dealt a double whammy when my father, upon hearing of Sofia's condition, revealed to me that at the age of six I had been diagnosed with autism as well. I can't begin to describe the intensity of what I went through. It felt like I was swimming in an ocean of confused emotion. So much to deal with. I had lived my entire life to that point, feeling that something was wrong with me but never knowing what it was. I knew I was a little different, but did not know why.
Perseveration: describing the behavior, generally displayed by those with various developmental disabilities, of extraordinary, exclusive and lasting obsession to a detail or occurrence others consider minor.
If you have seen the movie Rain Man you may remember a scene where Dustin Hoffman picks up a telephone book and begins memorizing it. When I was in my mid teens, my father had a set of Chilton's auto repair manuals. I was fascinated by them and went through them memorizing the engine stats tables. I was able to recite the cubic inch size, number of cylinders, and horse power of every engine made in America from 1960 to 1975. I could also tell you which vehicles these engines were offered in and in which years.
This is a result of two "talents" ASD people often have. Superior rote memorization capability and the ability to perseverate. It's not uncommon for an ASP person to memorize obscure sets of facts like vacuum cleaner parts or presidential trivia. In my case it was automotive engine stats, which by it's nature probably did not seem quite as nerdy or weird as other things might seem considering I was a teenage boy. And back in the 1970's, every teenage boy in rural Georgia NASCAR country was car crazy. It helped me fit in a little better, though that was not really my intention, just a happy coincidence.
Fast forward to 2006, after the first weeks of immense shock, I began doing what I do best, perseverating. In this case, it took the form of researching and reading. In a period of what for neurotypicals would seem like an unbelievable level of focus, bordering on obsession, I had not only amassed a huge cache of knowledge from internet articles, but I literally emptied my local branch library's selection of books about autism, completeing no fewer than thirteen of them in a period of three weeks.
It turns out that in about 1967 I was diagnosed with classic autism. Clearly high functioning, but at the time Aspergers syndrome was not yet well understood and so most children with what we would now call Aspergers were usually either diagnosed as autistic (rarely) or more often diagnosed with some sort of mental disorder such as manic-depression (now called bipolar disorder) or schizophrenia.
Autism Then And Now
In the late 1960's, those of us who were borderline sort of existed in a grey area of definition that often left parents with a difficult choice. Either dump us into an institutional hole and forget we existed, or don't and hope for a miracle. For those who made the latter choice sometimes they were rewarded as we did seem to "grow out of it".
I'm in that very last category. At first, my teachers who of course had no training whatsoever in developmental disorders thought I was retarded, until IQ testing showed exactly the opposite, my Stanford-Binet scores showed me to be within the mensa range. A surprise which initially lead school officials to declare that I had a "learning disability" of some kind and leave it at that.
The school psychologists/social workers however hit the mark with their diagnosis of high functioning autism. It was recommended to my parents that I be dumped into a state institution for the mentally disabled, or they could hold off for a couple of years to see if I improved. Autism was not well understood at the time, but it's symptoms were not altogether unfamiliar to teachers and school social workers of the time. They knew that sometimes kids who stared off into space and rocked in their chairs seemed to myseriously grow out of it eventually, and sometimes they did not.
I became the product of a mixed blessing, my father refused to believe that I was anything other than an unruly child, and my mother refused to dump me into a mental institution, I must say that in some respects I am most grateful for the steadfastness of their attitudes. Had they not made that decision I might be living under a bridge somewhere or perhaps in prison today. I am most grateful that my parents chose not to give up on me.
However, having said that, the other side of the coin is that I never received any kind of treatment or therapy for the condtion. As a result, my whole life to this point has been a struggle to survive in a neurotypical world without having any knowledge of why I am struggling or what I'm struggling against. And believe me it is absolutely a struggle, every day of my life.
Now I don't want to give the impression that my parents were completely indifferent. They were not, but they did not really know what to do. Because they refused to believe I was autistic, they brought me to many different psychologists none of whom had any specific training in Autism. All of whom diagnosed me with ADHD which is generally if not always a subset condition with Autism, but none understood the core condition.
Until much more recently, very little about autism was well understood and most Psych degree programs did not require courses in it, it was usually an elective if offered at all. In the 1960's the condition was believed to be quite rare, about 1 in 25,000 so it was not exactly a hot topic at the time.
It therefore should come as no surprise that most psychologists had little understanding of autism. The general perception of autism at the time was of a relatively severe variety in which the subject did not have the power of speech or was completely unable to function in normal society. What we now call Aspergers syndrome was rarely if ever recognized for what it was.
There has been a gradual evolution in the understanding and recognition of Autism since that time. Again from the the movie Rain Man, there is a scene where Dustin Hoffman is in a psychologist's office being evaluated. The doctor asks him a few questions and then remarks that he is "very high functioning". That was the perception in 1988 when the movie was released, but by today's standards that level of severity would not seem so high functioning, it would more likely be considered moderate. During the 1960's however, it may not even have been recognized as Autism.
The Face of HFA/Aspergers
So what does a very high functioning autistic/asperger really look like? Well, when you first meet them they may seem quite normal (actually neuro-typical is the term we prefer). But after a few minutes you may begin to notice certain peculiarities. For example they might tend to steer conversation over to a topic of interest to them and once there, they can't seem to change the focus of conversation.
They may repeat themselves, perhaps many times. Some of us who recognize that we are doing this will try to rephrase the same points, but the astute observer will notice we are really just saying the same things over and over.
That much might be considered common knowledge. Now, here is the part you might not see in the textbooks, or news articles, or probably even on the internet. I repeat myself in conversation for two reasons:
- I miss the social cue that would tell anyone else that the person I am talking to understood what I said. Maybe it's a little thing one sees in their eyes or a facial expression or something. I don't know, I don't get it, I never have, probably never will. So to make sure they got it, I cover it again, and sometimes I might keep doing it until they make it obvious to me that they got it. Sometimes I won't stop until they say, "OK I got it!", or until they respond to it with a comment on it. That's my social cue, you've confirmed verbally that you heard what I said. I'm extremely uncomfortable taking it on faith that they understood what I said.
- Sometimes if the topic is very narrowly focused, once I cover it I don't know where else to go with the conversation, so I stick to what is safe and comfortable. The thing I know well, the thing I probably already said.
Beating It To Death
Sometimes as I'm discussing a topic of interest, I'll start going into excruciatingly fine layers of detail. This is common to a LOT of HFAs/Aspergers. Why do we do that? This is a little more complicated. It goes to a problem in understanding basic human nature. I see things in very fine detail, I see the connections between details and how they work all along a chain of understanding. But I don't know whether anybody else does. From experience I know that I think of details that most people don't focus on. Sometimes a detail will seem hugely important to me that seems trivial to everyone else or they don't see at all.
For example, if I order a tostada at Taco Bell I might specify that I want the sour cream applied directly on top of the beans and before they put on the lettuce and cheese. Ridiculous to most of you I know, but it's a big deal to me. If I order a pepsi and they fill it a couple millimeters below the fill line I get annoyed, I'll insist that they fill it the rest of the way. Most people wouldn't notice or care.
I guess I do that because I see things in black and white, either I got what I orderd or I didn't. It's real hard for me to deal with grey areas. Grey areas mean uncertainty. Autistics don't like uncertainty, we are comfortable in our routines, straying outside of those zones can be frightening or at least disconcerting.
Sometimes I will ask people to explain things in great detail and I am terribly annoyed when they gloss over something. Usually this serves me well (though it does irritate people) because I'm almost always right about such things. There is almost always a detail that gets overlooked that I was worried about. In this respect I find NTs terribly predictable. In my world it is a rare NT indeed who can do anything without screwing it up.
I think it's for this reason that you find so many Aspergers in the engineering disciplines. I'm a software engineer, I have to be able to think binarily. Black and white, it either is or it is not, no grey area. I have to say, there are an awful lot of people "like me" in the computer world. I don't think that's an accident.
So people get the sense that I don't trust them, and you know what, they are right. But it's not because I see them as nefarious, I just see them as NT and NT to me means imprecise by nature.
Now does all this mean that I am ultra-precise and perfect in all things I do. Not by a longshot. I sometimes lose sight of the big picture by focusing on details, or sometimes I focus on trivial details at the expense of more important ones. The way I think is more a reflection of interest than priorities. Again, I am most comfortable in an area where I have an interest.
So what differentiates me from someone at the moderate level of autism? Well, I can, with effort, function in NT society if I can stay in my comfort zones, and I can for brief periods of time fit in to less comfortable zones at the expense of a lot of mental effort. This effort however is exhausting and comes at a price. I can't keep it up for very long. Basically, when I'm deliberatly fitting into a situation that I'm not programmed for, a gradual resentment level builds inside me. At some point I will melt down.
The biggest problem for me is that I look normal, I do my work well, and I can appear to act normal if not in a highly visible, high responsibility position. So sooner or later some a**hole wants to put me in a position of managerial responsibility. I am then trapped in a catch 22. If I demure, I'm "not being a team player", if I agree to do it, I am setting myself up for a catastrophe. Then the meltdown becomes inevitable and severe. Frustration builds to the point that I can no longer mask it. In such situations I usually end up quitting whatever job I'm in, or I get tossed out after I've annoyed enough higher level managers.
There is no support system for people like me. We really fall through the cracks. We tend to be too high functioning to receive (or want) the kind of supports designed for lower functioning individuals, but are unable to truly fit in to the NT world.
I get asked a lot of questions by parents of ASD kids and others. So what follows is a list that some may find helpful.
Q: What is the difference between HFA and Aspergers syndrome, are you an HFA or an Asperger?
There is some debate about this and whether there should even be a distinction. The DSM IV defines the difference at least in part as being based on how language developed in early childhood. Generally, one is considerd an Asperger if they did not have a significant delay in their language development. A child who has not begun developing speech by age two is late. At two and a half it would definitely be considerd significantly late. In my case, my parents (at a distance of nearly fourty years) could not remember at what age I developed speech though they did say my speech development was unusual in that it was not gradual. I went from being non-verbal to fully speeched in a matter of days. This is not altogether uncommon for people on the autism spectrum. Beyond the initiation of speech, most people don't consider that there is a significant if any difference between high functioning autism and Aspergers syndrome. Beyond that, I'll leave the fine points of distinction to the "experts". In my view it's really the same condition with slightly different permutations, probably not worthy of having two distinct classifications.
Q: Why do these kids stare off into space, what is going on in their heads when they do this?
A: Well, in my case, I was fascinated by naturally occurring patterns. Sometimes I would see a spot on the wall or an interesting pattern which if I looked at it for a while would just seem to change. It's very seductive, I would almost feel myself pulled into it and to another world or dimension. I would be staring at it and just kind of trying to figure it out, work out what it is and then this pulling would start. It's rather hypnotic and a strange sense of peace and well being would come over me.
Q: Why do you rock?
A: The short answer is, it just makes me feel better, relieves stress. It helps to restore some equilibrium. We live in a world of frequent if not constant confusion and anxiety. The rocking helps us disconnect from that anxiety and calm ourselves.
Q: Why are you so socially awkward?
A: This is a biggie, for me it's two things. I see conversation not so much as method of socially connecting but rather as a vehicle for the transfer of pertinent information. This makes small talk extremely difficult for me. Once I've conveyed an idea, I don't have much reason for further comment. I don't really have anything else to say and no interest in hearing anything else on the topic unless it's of some salience. I don't see much value in discussing something that has no technical or specific value.
The second thing is the missing of social queues. Subtle social queues like little facial expressions or some aspect of how you communicate non-verbal information with your eyes completely escape me unless they are exaggurated. When it comes to facial communication if it's subtle, chances are I'll miss it. These social queues, are evidently more important than one might think. People might think I'm being dishonest or hiding something or just not interested when in reality, I'm just communicating the only way I know how.
Q: Why can't these kids (or adults) maintain eye contact?
A: This one is easy, it's because it holds no value for us. NTs evidently transfer a lot of unspoken things via eye contact, for some of us, we can't really see it. It's like looking into a shark's eyes or a camera lens. We just don't get any information that way and don't always know how to send information that way. And in fact, for me at least, it is very distracting. When I make eye contact, it's because I feel forced to do it, so I end up concentrating too much on the deliberate act of eye contact and miss half of what people are trying to tell me. It just does not come naturally for us.
Q: How did you "grow out" of Autism, is it possible for my child to grow out of it too?
A: OK, this is a BIG misconception. If you are on the autism spectrum, you will never "grow out" of it. It is who you are, just as you will not grow out of having two arms or having a big nose or whatever. What happens is that some of us who are sufficiently high functioning and least severe can learn adaptation strategies. Also, autism is a developmental disorder, meaning exactly that. We as human beings never stop developing. In some cases, we develop very slowly. For example, my senses of emotions have developed very slowly, to the point that I have some emotions now that I did not have 20 years ago. It took until I was in my 40's before I had developed any sense of empathy. It was impossible for me to share in someone's joy or sense their greif. I still struggle with it, but I do find now that I absolutley do empathize in a real sense with those who are suffering. When I was younger, I could only do so intellectually, today I do feel it. To that end, we learn how to do things intellectually that NTs do by instinct.
I observed a very interesting thing regarding my daughter's condition. We were watching Real Time with Bill Maher. Now here clearly was something that my daughter at age six could not possibly have understood the comedic implications of as Maher cracked jokes about political issues. However my daughter was practically howling with laughter. Why? Because she heard the audience laughing and realized the appropriate response was to laugh. She made an intellectual connection to a behavior that is instinctive for an NT. She is at this early age training herself to adapt. It's what we do for a lifetime.
Q: What is a savant, are you a savant? I've heard that Apergers/HFAs are really good with math are they all savants?
A: Autistic savants are relatively rare and usually pretty low functioning in most areas not related to their savantism. HFAs/Aspergers are not savants. We are often gifted in general areas such as math, rote memorization, or superior visualization skills, but we lack the deficits that savants usually have and our "gifts" are rarely as extreme as those of a savant. Many of our "gifts" come from perseveration over a topic of interest rather than any superhuman abilities.
Q: I've heard autistics think visually or in pictures, is this true?
A: It is true for some, but by no means for all. I personally do not think in pictures, and many Aspergers don't, but I have known some who do. They actually see their concepts visually, this works well for engineers who can see in three dimensions what a design should look like. Mozart, who many consider was probably on the autism spectrum, used to describe his process of writing a symphony as seeing it all at once, as if one were in a balloon above a parade. As you increase in altitude you can see the entire thing at once. That's pretty classic, but again it's not a gift we all have.
Q: When should I reveal to my child that they have autism?
A: This is an intensely personal decision that I could not make for anyone. However, I can offer the following. I did not find out about my own diagnosis until I was an adult in his my 40's. However, once past the initial shock, I found it to be one of the most liberating and cathartic experiences of my life. Suddenly it was as if a huge weight was lifted off my shoulders and a veil of understanding was lifted that had been separating me from the world. I deeply respect the need to protect our kids from having to deal with the knowledge that they have a deficit, but I must say in all candor that I really wish I had known about this before I reached adulthood. It would have saved me so much misery if only I had known why I didn't fit in. I would have had the ability to understand so many of the forces that gave me so much unnecessary misery.
My own daughter is only six years old and of course much too young to comprehend it, but I know that at some point she will realize she is somehow different and either divorce herself from all social activity or experience great misery as she hopelessly attempts to fit in to a social structure that she never will really belong to. I think when that begins to happen we will have to tell her, probably in her teen years. I believe that when we know who and what we are, we are much better prepared to deal with life and the challenges it throws at us.
Q: Who are some famous autistics?
Rare Footage of Bill Gates doing the classic Autistic Rocking
A: Among the living, Temple Grandin is a well known and well documented moderately autistic individual. She is a professor of Animal Science at Colorado State University and has written extensively about her life and experiences. Actress Daryl Hannah has also been formally diagnosed with autism as has musician Courtney Love. Other confirmed autistics include Dan Aykroyd, Gary Numan, Peter Tork (of the Monkees) Jazz Prodigy Matt Savage, Mathew Laborteaux, and Author Elisabeth Hughes.
Other famous people generally believed to be or have been somewhere on the Autism spectrum include:
Arthur Conan Doyle
Q: Is there a link between musical talent and Autism?
A: Well there certainly seems to be, looking at the lists of famous autistics above there certainly seems to be an over representation of musicians. I am a musician myself. A lot of people like music a lot, but I think what differentiates us on the spectrum is perhaps that there is a strong attraction to use it because we can use music to express ourselves, we feel through it. Since communication and expression are often problematic for us, there may be a natural inclination to music. Also as music is highly technical and even mathematical and requires a lot of detailed study, we who perseverate can get through it when others might not. Personally, I enjoy the niggling details of Baroque counterpoint and have studied it to the point that I can now write 4 part counterpoint without even using an instrument. All I need is a sheet of paper. It's better if I use a keyboard though. Also my daughter's music teacher says she has perfect pitch. A considerable rarity for a child of her age. Even Mozart did not have perfect pitch at that age, though it is said that he developed it by his teens. So perhaps there is a connection.