About a year ago, I attended a conference workshop on adult autism diagnoses which addressed their value to those on the spectrum. I was surprised, and even shocked, to learn that there is controversy about the value of these diagnoses, particularly for less-impaired adults who have managed to attain an otherwise adequate quality of life in spite of their condition.
Personally, I could not disagree more strongly with this view.
As an older adult on the spectrum who was diagnosed late in life and has met many others who had a similar experience, I can both attest to the self-knowledge and understanding that is gained from this diagnosis and appreciate the practical utility that it can have as well.
My own journey to diagnosis lasted over 10 years, beginning in the late 1980’s and culminating with a credible self-diagnosis in late 2000. It started shortly after the 1988 release of the movie Rain Man, which for many was the first time they ever heard of autism, and which resulted in substantial interest among the general public along with a plethora of news reports, articles, documentaries, and books on the subject. Whenever I witnessed a portrayal, real or fictional, of an autistic person, I immediately noticed similarities to myself in terms of behaviors, mannerisms, interests, etc. I had comparable reactions to written accounts and descriptions of autistic individuals and traits. Because I was not as severely impaired as they were, however, I did not take this very seriously at the time. I thought that, at most, I simply shared a few personality traits and perhaps felt some identification with these people.
It was not until the mid-1990’s that I first encountered reports about milder variants of autism such as Asperger Syndrome (not recognized in the U.S. until 1994), and accounts of less-impaired autistics, that I began to consider the possibility that I might be living with such a condition myself. Unfortunately, there was little information to be found about this at the time. Interested as I was, I could not find any sources of it. I inadvertently came across such a source at a major bookstore in New York City, where I live, that had a small selection (about a third of a bookcase shelf) of autism books in its childhood education division – I somehow noticed them while looking for the technical books division! Still, the information in these pertained to more severely-impaired individuals; although most if not all of the milder traits applied to me, I had none of the more serious deficits or challenges characteristic of autism; in particular, I had never been non-verbal. Even then, I could yet again not help but notice many similarities whenever I saw depictions, on TV news programs or documentary films, of autistic persons.
It was not until internet search engines became commonplace that, after spending a weekend with a friend looking up a variety of things online, it occurred to me that I could do this to find information about autism which might apply to my own case. This was on the evening of August 15, 2000.
Although by then I fully expected that I would learn something of significance, I was not prepared for what happened next. As I looked at diagnostic criteria for Asperger Syndrome and “high functioning” autism (as it was then called), along with lists of typical traits, behaviors, deficits, and challenges, I immediately realized that nearly all of them unmistakably applied to me, at least to some degree. One such list, posted on the website of a local parents’ group, enumerated 18 common characteristics, of which I had exhibited 17 over the course of my life. What also struck me was that these were not vague, general descriptions that could apply to anybody, but rather specific ones which were all very unusual.
I cannot overemphasize the significance of this for me – it was literally as though, at the age of 44 years, my entire life had just been explained to me in one fell swoop. I finally understood why I had always faced challenges in so many aspects of socialization and daily living that the overwhelming majority of people had little or no difficulty with. Over the years, I had explored some of the “pop-psychology” and “self-help” movements of the 1970’s and 80’s with few benefits. Even mental-health professionals had been of limited help; as it happens, most knew little if anything about autism and virtually none had even heard of Asperger Syndrome.
Even though I was finally convinced that there definitely was something to this, I immediately decided to find a specialist who could confirm it to be sure that I was not just kidding myself – had this been the case, I would have felt very foolish. It is at this point that my story takes an unusual turn because, for reasons of which I am not certain, my mother had maintained a diary of my development in early childhood. When I examined it, I found descriptions of many classic, even textbook, autistic traits and behaviors: at the age of 2 ½ years, I was playing with my toys by lining them up in long rows; although I never lost speech, and my language usage was essentially perfect, I continually reversed my pronouns; I was very focused on whatever captivated my interest, but otherwise oblivious to many aspects of my environment; I was also sensitive to certain sounds and noises and to the flash of a camera, and could not tolerate the motion of elevators. Also described at length were my incessant perseverations on subjects of interest (anything electrical or mechanical, which led to a career as an engineer), as well as her exasperation with my overly-selective eating habits (which I have to this day). I was able to find a specialist to whom I presented this evidence, and he agreed that I was clearly living with some degree of autism. Had it not been for this, it would have been very difficult, at my age, to make a conclusive determination but, with this information, there could be no doubt. I really was autistic.
I responded to this knowledge by learning as much about the autism spectrum as I possibly could. I read every online and print article and book that I could find, went to every lecture and conference in the region that I could get to, and started attending support groups on a regular basis. Coming from a scientific background as I do, it was of great value to finally learn the reasons underlying many challenges, difficulties, and personal differences of which I had long been aware but never understood. Of even greater value, however, were the first-person accounts of other adults on the autism spectrum in books, memoirs, articles, and talks where they described their experiences, as well as those shared by members of support groups I attended. I would regularly hear stories so similar (often identical) to my own that it was downright uncanny and even scary at times.
Once again, I cannot overemphasize the value of self-knowledge and understanding that comes from an adult diagnosis, and have found that it becomes even more significant as the age of diagnosis increases (as reported by many older adults I have met). This should hardly come as a surprise – the later in life one is diagnosed, the longer one has been living with this condition yet never understood why they had faced the challenges that it presented for them all of those years. Although not everyone is as receptive to such a diagnosis, for many of us it is nothing less than life-changing.
As significant as all of this is, we also need to consider the practical utility of ASD diagnosis. Many of the challenges faced by adults on the spectrum involve finding and maintaining employment. In particular, the reasons underlying their difficulties are usually very different from those of the general population. As such, it can be very useful for autistics to have an understanding of those reasons. If one is in need of benefits, services, or accommodations of any kind on the basis of living with ASD, a formal diagnosis is almost always required. If one is participating in the mainstream job market, however, a thorough understanding of the deficits responsible for challenges faced can be of great value in addressing them. This can come from either formal diagnosis or comprehensive self-diagnosis using quality resources available online (of which there are quite a few). Shortly after my own diagnosis, I spoke to a well-known figure in adult autism at a regional conference, and asked how I should address this regarding my employer. I was told that there was no reason to raise the issue, as I had been working there for many years in what was then considered a secure position. At the time, this was very prudent advice.
Times have certainly changed since then.
Because of economic downturns in the early 21st century, resulting in the 2008 financial crisis, as well as the replacement of workers by new technologies, the nature of employment has changed significantly. In particular, employers now attach greater importance than ever to employee attributes that autistics are generally deficient in (interpersonal and communication skills, flexibility, adaptability, etc.) As such, it is essential for autistics to be aware of their deficits so that these can be addressed and so that any and all necessary services and accommodations can be obtained.
It is by now well-known that the prevalence of autism in the U.S. is much higher than was previously believed – 1 in 68 is the currently-accepted figure. Statistical data such as this at best can only provide general information about the impact of autism on our society. It cannot address many of the specific problems, and is certainly of little value to people who are actually on the spectrum. Those who live with ASD, and have done so for an entire lifetime, need to be aware of this, for self-knowledge as well as for practical reasons. We need to make sure that this happens whenever and wherever possible.
Karl may be contacted at firstname.lastname@example.org.