Autistic and Undiagnosed: My Cautionary Tale, (c)1998 Dave Spicer
This presentation was given at the Asperger Syndrome conference held in Västerås, Sweden on March 12-13, 1998.
OVERVIEW:
Living with undiagnosed autism for many years has a profound effect upon one's life. As someone who has done this, I felt it would be useful to others for me to describe some aspects of my experience. In particular, three groups may benefit most: professionals who work with autistic people diagnosed later in life, those autistic people who were identified only in recent years, and those people who are autistic and still do not know it. It is possible that parents of autistic children might find this presentation somewhat frightening, if they feel that their children must go through the same experiences I have. My hope is that by describing how things went for me, others can see what to do differently, so that the path they take will be different from mine.
The body of this presentation is divided into three sections. These are: internal mechanisms which I developed in childhood, the results of these mechanisms and other influences, and suggestions for other folks like me and those who work with them.
INTERNAL MECHANISMS:
Somewhere fairly early in childhood, I realized that something was different about me. My reaction to situations and events was not what my family expected. This resulted in puzzlement, then frustration, as it became increasingly clear that what had worked well for my older sister and brother was not working nearly as well with me. The most expressive thing I could do was to burst into tears over and over, but this did not communicate what was wrong, and despite a large and precise vocabulary I had no words for it.
Over time, I came to develop several coping mechanisms, in an effort to minimize the stress in those around me, and therefore my own stress.
One of these was to internalize others' expectations and criticism. This was necessary since I was extremely sensitive to feelings of disappointment or disapproval in others. These would overwhelm me, and I saw that if I could control myself tightly enough, this would not happen as often. While this mode of learning might be expected for a toddler, it was all that I had for many years. If I could do a good enough job of conforming to others' expectations of me, and avoid doing things which would result in criticism, then I could “fit in better” with those around me, and attract less of their awful-feeling attention.
The worst problem with this strategy is that it can be carried too far. Overconforming can ultimately lead to loss of identity, and I went quite far in that direction. Since it was safer not to express strong emotion, I learned to suppress it. Neurologically-atypical people are sometimes especially sensitive to medication, and autistic people are often extra-sensitive to sensory input. Looking at these together, I feel that I was - and still am - especially sensitive to my own emotions, and have to control them tightly to keep from being incapacitated by them. Adrenaline, especially, is very powerful and disruptive to me.
Spontaneity was a problem for me as well, because it could produce a wide range of reactions in others, some of which felt awful to me. So again, it was safer to suppress it than to suffer the possible consequences.
I also had trouble with being bullied. Bullies certainly appeared to know what they were doing, and seemed to clearly be in charge, and I took their threats literally.
I have found that there can be a very great difference between an autistic person's external behavior and his/her internal experiences. I was able to learn how to laugh at the right times, adopt the "right" tone of voice, gestures, posture, vocabulary, use of expressions, and (in many cases) social behavior. By the time I was 12 I came across as a quiet, polite, well-behaved child, and if anyone had asked me how I was doing, I would have insisted that I was fine.
I wasn't fine. The thing I needed most was not copious feedback on how to "act normally", but rather acceptance of me as I was. Without that, I developed a shame-based identity which found validation and acceptance only in behaving "correctly", regardless of the stress or difficulty I ran into while doing this. Since it was so clear that I was expected to be "okay", I would have desperately insisted that I was okay, regardless of how I actually felt inside.
Rewarding an autistic person for acting nonautistic is quite likely, in some cases at least, to result in an autistic person who acts nonautistic. This is not the same thing as the person no longer being autistic. Rather, it can be a person sacrificing his or her own identity in order to gain the acceptance and approval of others. For me, the consequences of this took decades to fully show up, but they did... I am reminded of the Bob Dylan song "A Hard Rain's Gonna Fall".
I’m saying this just to point out that what seems to be going on is not always what is really going on. There came a point when I desperately needed help, but was so conditioned to "be okay" that I refused it. If there are signs of difficulty or distress or depression it seems much better if they can be seen earlier.
What this left me was to appear adultlike, or what I thought was adultlike, and hope for the best. Using precise language was the best way I could see to have a chance of being understood, so I was precise. This wasn't the best solution, since it accentuated the difference between how I often sounded and how I acted when my internal controls failed. But it was all I had.
Suppressing my feelings did not eliminate them, though. A kind of underground reservoir developed inside me, containing frustration, resentment, jealousy, fear... and each instance of social ineptness or rejection added to it.
Over time, I internalized others' beliefs about me - that "there was nothing wrong with me", that I only needed to try harder, that if I really wanted to do things differently I could. In order to deal with each of these premises, I had to develop an interpretation of them, to translate them into something I could (at least partly) understand, and then turn into my beliefs about myself.
So "there is nothing wrong with me" became this: "Don't ask for help, because I'm not supposed to need any. Besides, if anyone looked really closely and still didn't find anything wrong, all of this really would be my fault. It's better just to have a small hope than to risk actually finding out."
And "all I need to do is to try harder" became "The other people around me are succeeding while I am not, and it must be as hard for them as it is for me. So I am never to complain about difficulty or physical discomfort. If anything is physically at all possible to bear, it should be borne in silence."
Finally, "if I really wanted to change, I could" evolved into "I am deliberately resisting having my life, and the lives of those around me, be any better. I don't know why this is. But everyone feels this way, and they can't be wrong because look who they are and how many of them are saying it." In other words, I was deliberately making the people around me upset and angry.
Trying to function under these self-imposed guidelines was difficult. It was like trying to build a house on swampy ground which could not support any weight despite looking all right at first glance, or like trying to ice skate on a pond which in many spots was barely frozen over. In each of these cases, the surface impression does not at all reflect what lies beneath, or the fragility of what is seen. And those around me built their houses, or skated on their ponds, and could not understand why I was having so much trouble. And neither could I. My self-esteem was very low, and more than anything else, I was ashamed of my self. Of my being. Of my entire life.
As a young child, I heard my mother many times say, in a tortured-sounding voice, "God in Heaven, give me patience!" While I'm sure she needed it and was entitled to ask, the impression I got was that I was so awful that God had to be asked for help...
For many years - from childhood until I was 46 - I knew only that I was having a great deal of difficulty with many things which seemed to come easily to other people. Among these were socialization and "social communication" - talking about things other than strictly-factual information, that is. Others' expectations were both mysterious and frightening to me... I often literally did not know what to do. Also, despite relatively-high intelligence, I was unable to grasp technical material that was abstract rather than concrete in nature.
It is possible, with a great deal of ongoing effort, for an autistic person to appear to be pretty much "like everyone else" in some settings, at least. What is not visible from the outside is the amount of work - and stress - involved in maintaining this facade.
From the inside, not knowing any better, I felt that whatever difficulties I had in relating to other people, in learning abstract material, or in coping with constant change and unspoken expectations were all my fault. If I could somehow "try harder", everything would be all right. Since I could not, my difficulties were therefore my own responsibility, and I was trapped in them.
A person in this kind of situation has probably despaired of ever receiving support or understanding from the outside, and probably does not have much self-esteem either. And the stress level, internally, is very high.
What came from all of this was, for me, a state resembling post-traumatic stress. Tendencies toward isolation and passivity, not uncommon in autism anyway, were reinforced. My understanding of what was happening around me had to be faulty, because so many things kept going wrong. I lived with a great deal of uncertainty about what was true and what was not. Unable to rely on my perceptions, I instead constructed a model of what I thought the world was, then lived in constant fear that someone would rush in and tell me that it was wrong.
For me, especially when several unpredictable things happen one after the other, I feel like my understanding of the world is collapsing... as if I am trying to hold onto something very important and it is becoming slippery in my hands. Think of a steady drop in barometric pressure... one starts out with fair weather and clear skies, and ends up with buildings exploding in the center of a cyclone. Or imagine standing in the ocean, with the water almost up to your mouth, and seeing waves coming at you, and feeling the sand beneath your feet shifting.
(There is a phenomenon known as "learned helplessness", which has been described by Peterson, Maier, and Seligman in a book bearing that title (Oxford University Press, 1993). It was observed that laboratory rats, after being subjected to random, inescapable electric shocks over time, would not try to avoid them when it later became possible to. When I read of this recently, I saw numerous parallels to my own life, in the pervasive stress, passivity... even in the experiments themselves. The experience of thinking things were going along all right, and suddenly being informed that they were not, due to something I had done hours or days earlier... emotionally, this was close enough to an electric shock. I could definitely relate. What's more, the "learned helplessness" response seems to reinforce some characteristics of autism, making change or growth all the more difficult.)
In hindsight, it seems pretty clear to me that many of the mechanisms I had developed worked actively against my being helped, had effective help been available in the mid-1950s . Effectively, I was locked into an experience of living which looked as good as possible on the outside while barely functioning on the inside. This pattern continued for decades. It is very important for me to point out that this happened despite the best of intentions on everyone's part. None of what I am relating is meant to assign blame to anyone.
RESULTS:
Academically, elementary and junior high school were not difficult, except for "penmanship" at which I was awful. What I remember most clearly is how emotionally fragile I was, often bursting into tears to the dismay of my teachers. By high school, I had managed to become bland enough to not attract very much attention, except when a teacher would notice the difference between my very-high performance on standardized aptitude tests and my very-average grades. "Unrecognized potential", they called it.
College was a different story. In the fall of 1965, I found myself hundreds of miles from home, at a school where I knew no one, facing demands for self-reliance, initiative, and organization far beyond what I could manage. Also, as the subject material became more and more abstract, I found myself no longer able to understand it. The best I could do was to "survive as long as possible", as I had learned to do years earlier, with grades falling each semester. Toward the end, I stayed away from classes for weeks, afraid and alone. Finally, after three-plus years, it was over, except in my memory... thirty years later, I still have unpleasant dreams about being there.
Along with some of the basics of engineering, I came away from college with a great deal of experience with alcohol. From almost the very beginning, I found myself unable to drink in moderation. The combination of social isolation and academic stress, coupled with the "internal mechanisms" I described earlier, led me to seek relief. I kept seeking it in this manner for many years to come.
This was not a useful strategy for me to follow, because the anger/frustration I felt at other peoples' "not doing the right thing' were apt to come out more, and I was very hostile. About the last things I needed were lowered inhibitions and impaired judgment, and alcohol is rather famous for facilitating those.
The courses I had taken in my first few semesters qualified me for engineering work in the local telephone company, which later led into computer programming. As time went on, my passivity and lack of self-direction interfered seriously with my productivity. Changing employers, which I did twice, would help for a while but the underlying problems were still there. At my last job, I became involved in a huge and very complex project which I was unable to handle my assigned portion of. A couple of years later, I went on long-term disability for anxiety-related issues.
In the midst of my time at college, I had become engaged, and married soon after starting my first full-time job. Between my lack of social development and my drinking, the marriage lasted just a few years. I remarried in 1976, and found that I still did not know how to have a successful intimate relationship. We stayed together to keep from being completely alone.
The first hope for change in my life came in the summer of 1983, when I entered recovery from alcoholism. Many issues still remained, but we had enough hope to have a child. Our son was born early in 1985. We separated in 1986 and divorced two years later.
I should add that, during these years, I began to see mental health professionals, in an effort to understand what was going on with me. Several years (and a lot of money) were spend pursuing various possibilities, including codependency, ADD, and nonexistent childhood sexual abuse. In each of these cases, some of my affect and experiences matched some of the profile for the condition. In a couple of cases, the professionals involved either ignored a clear sign such as my overloading during an exercise and banging my head on the floor, or wanted to continue pursuing a path which was clearly not leading anywhere. So along with everything else, I was seeing professionals during this time, trying to find out why my life had gone as it had.
By the time my HFA/AS diagnosis took place (in April 1994 at age 46), I was already on disability leave. Thus, my entire work career took place before anyone - my employers, my coworkers, or myself - knew what could have been done to promote a different outcome. The periods of relative success were seen as puzzling rather than instructive, in that the temporary conditions enabling them were not recognized as being crucial. Decades of ongoing difficulties without apparent cause or explanation can have a devastating effect upon one's self-esteem, sense of competence, even one's sense of self-worth. The accumulated trauma can be, well, disabling.
Parenting is said to be a very demanding occupation. As a "shared-custody single parent", I found the stresses of parenthood barely manageable. My son, too, was having increasing difficulty in preschool, then in school and afterschool programs. Finally, in the fall of 1993, we were referred to the Asheville TEACCH Center. My son, who was then 8 years old, was evaluated and diagnosed HFA/Asperger, in addition to the OCD which had already been identified. At my request, I was also evaluated by TEACCH, and was diagnosed HFA/AS in April 1994. By this time, I was on disability leave, which ultimately became long-term disability for anxiety-related issues. My son was placed into therapeutic foster care in the Spring of 1995, and remains there.
My son Andrew, when asked which kids he would rather be with, said: "The special needs kids, because they don't make fun of me." Nearly all of my friends are "special needs" people of some sort - one is blind, one has serious ataxia, some are autistic, a number are recovering addicts (as am I, since alcohol is a drug too), my new wife is ADD (we married in July 1998). In each case, we build what relationship we can, and are quite good at putting up with each others' shortcomings.
It's not really possible to condense thirty years of experiences into one presentation, but I hope several themes have come through this brief history: I was still having major difficulties with socialization, became unable to work, and was barely able to cope with the stress of parenthood. Without any understanding of why my life was as it was, without any effective support, and with the added complication of years of active alcoholism, at times I'm surprised that I survived it all. While my experience was not as destructive as it could have been, it serves to illustrate what can happen when an autistic person does not receive the help he or she needs. This is why it's called a "cautionary tale".
SUGGESTIONS:
A newly-identified autistic adult needs support, and needs understanding. It may not be at all apparent to the person that their life could be any different than it had always been. If the reasons for difficulties in different areas can be explained, matter-of-factly, this information can be processed much more easily than profuse expressions of emotion. As one's life experience begins to make more sense, then much of what happened can be reframed in ways that no longer involve guilt or shame or self-hatred. This process may take quite a while, because of the amount of trauma involved.
It seems important that a person in this position be able to meet others who will listen, and who will understand. Being able to tell one's own story, and have it listened to, can be a major step in gaining back - or gaining for the first time - one's self-respect.
The hardest part for me was when, as a child and adolescent, I saw everyone taking a path which I was not able to follow. For a long time I felt utterly lost, not realizing that I was on my own path... and that I would not be on it alone.
I think the best way to start on that path is by finding someone with whom it is safe to tell the whole story about what day-to-day life is like, including all of the fear, panic, confusion, anxiety, guilt, shame, self-doubt, self-hatred, anger, rage, feelings of 'phoniness', and despair. And also being able to speak - and be understood - about difficulties in relating/interacting with others, and about pretty much anything which might be seen as "unusual".
This is not easy to think about doing, let alone actually doing it. Imagine laying yourself absolutely bare in front of someone who might then just smile and say, "So what? Everybody has problems like that from time to time. Just try a little harder and you'll do fine.", and knowing that this is a LIE, but being absolutely unable to articulate why, and so spiraling further and further into depression, self-hatred, withdrawal... so some reluctance to take that kind of risk is understandable.
For many years, I had a fear that "something was wrong with me"... and right along with it the fear that something wasn't "wrong with me"... that everything which was happening to me was my own fault/responsibility. It was an awful trap to have to live in. Only in recent years did the truth finally become known - that there is something different about me, which lets me make sense of what has happened and how my daily life goes.
IMO the time from one’s late teens to early 20s is when the developmental difference will be the most sharply seen, because one's peers are advancing rapidly while some of us are progressing much more slowly. This doesn't mean we will never be able to be successful at <whatever>, just that the time has not yet come. There are many things which I can now do much more capably that I could when I was 20... or 25, or 30, or 35, or 40, or 45. Although some of my growth has been very slow, or very delayed, this means that I get to keep on growing for as long as I live.
What I needed was not to attempt to conform to all of everyone's expectations - such attempts were, for me, nightmarish - but to learn and practice and succeed at working with appropriate, reasonable goals, in a setting where temporary failure was not a disaster or a tragedy or a heartache or a (literal) shame.
I have been fortunate to be in the company of many other autistic folks, both in person and via the Internet. Together we are doing what we could probably never do alone.
For me, the answer to combating isolation was not to keep tying myself in knots trying to be NT (that is, to behave like a “neurotypical” person, one without a neurologic condition) when I wasn't... it was in being in contact with others like me, and with understanding professionals. This has not made everything - or even most things - easy. But it has given me hope, and a sense of purpose, and an understanding of why my life is as it is.
Even those who have suffered for many years can find hope, and can experience much-higher quality of life. Perhaps it is this process of awakening, rather than the achievement of specific goals, which deserves the greatest attention. This is what has worked so far for me.
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