When I was first diagnosed with Asperger Syndrome in late 2000 at 44 years, I was already a middle-aged adult. For most of my life, I had always felt that I was different from most people my age in a variety of ways, not to mention frequently reminded of such by others (usually in a very unpleasant manner). The diagnosis, at long last, explained the reasons for this. As such, it was nothing less than the explanation that I had been searching for my entire adult life (at least since adolescence). Consequently, I was elated to receive it. During my years of involvement with the adult autism community, particularly by attending and facilitating support groups, I have found this to also be the case for a vast number of autistics who are past a certain age.
For much younger individuals (particularly adolescents of middle-school or high-school age), this can be a very different story. That is the time of life when socialization and social skills become much more important than they had ever been. Being told that they are living with a condition that can impair their social functioning is literally the last thing that they want to hear. An eleven-year-old in middle school will not be nearly as receptive to such as I was at the age of 44, and will certainly not feel the sense of relief that I did. These two cases need to be dealt with in very different ways.
Older Adult Diagnoses
In the context of ASD diagnosis, I generally define an older adult as someone who entered adulthood before the advent of increased public awareness about Asperger Syndrome, so-called “high-functioning” autism, and the autism spectrum in general. Such awareness increased dramatically during the first two decades of the 21st century, but prior to that time, knowledge of these was anything but common, even among mental health professionals. In fact, the diagnoses did not even exist in the U.S. until 1994 with the publication of DSM-IV. The result of this is that anybody who came of age prior to the first several years of the 21st century was, almost by definition, undiagnosed because the diagnosis was not even known during their childhood.
The more fortunate in this population, including myself, were never diagnosed with any condition, particularly when they were “twice-exceptional” and had unusual scholastic or other abilities, or simply did not have serious enough impairments or severely inappropriate behaviors to warrant any such kind of diagnosis. Others, however, were often misdiagnosed with different conditions, ranging from milder ones like ADHD to more serious mental illnesses (the term “emotional disturbance” was often used for children). They were treated for conditions that were not even present, sometimes using ineffectual methods that often did much more harm than good (e.g., powerful psychiatric medications). In any case, these individuals rarely received appropriate treatments that might have actually improved the quality of their lives. For that matter, the real nature of their deficits and challenges was never even recognized.
The fortunate few of us who were able to “stumble” onto the correct diagnosis when it finally became available constituted an even tinier fraction of the overall adult ASD population. They came to it by a variety of means. Some, like me, had learned about autism through the media, ranging from popular portrayals (e.g., Rain Man) to documentaries, news reports, articles, books, etc., (I managed to find a local bookstore with a small section of books about autism) to the internet (which resulted in an explosion of information) and recognized striking similarities between the individuals depicted and ourselves. Others were identified by a family member (an older sister, for instance) who had somehow encountered autism and recognized that their relative exhibited many of the traits. A substantial number of adults were also identified when their children were diagnosed on the autism spectrum and either they or the professionals working with their children recognized that they themselves exhibited the same traits (ASD is well-known to have a strong hereditary component); there is said to be an “army” of adult autistics who arrived at their diagnoses in this manner.
Receiving and Dealing with an Adult Diagnosis
Once an adult is identified, either through self-diagnosis or by another individual, they need to accept the reality of their condition. For many older adults, especially the self-diagnosed who have long been seeking an explanation, this happens almost immediately and is greatly welcomed. For those who are diagnosed by professionals, it may come as something of a surprise and can be received in any number of ways – from acceptance to skepticism to doubt to denial, at least at first; it also may or may not be welcomed, although in my experience I have found that, especially among older adults, the majority eventually if not immediately both accept and welcome the diagnosis.
For those who are identified by a family member, friend, or some other person in their lives, the situation is a bit trickier because it involves giving the suspected individual news that they may not be receptive to, and even suspect the motives of the person giving it to them. One method that I have long suggested is to have another adult on the spectrum disclose their own condition to the individual, giving a comprehensive description of its traits and challenges, and seeing how he or she responds to this. The idea is that the autistic person appears to simply be sharing a personal aspect of their life and, as such, is less likely to raise any suspicion. I have actually used this method to (I believe) identify a few people who were almost certainly on the spectrum (I am clearly not qualified to make an actual determination) but, alas, were neither receptive nor particularly interested.
Once an ASD adult accepts a diagnosis, I usually recommend that they learn as much about their newly identified condition as possible. For me, this consisted of reading every article, both online and in print, that I could get my hands on, and attending every talk, workshop, and conference that I could manage to get to; in particular, I found that personal memoirs and autobiographical articles by other adults on the spectrum were especially valuable in that they told of experiences, challenges, difficulties, etc. that often were strikingly similar to my own. As such, I strongly recommend these for all newly diagnosed adult autistics.
I especially recommend going to a support group if one is available in the local area. As a result of the COVID-19 pandemic, a number of groups, such as those hosted by Aspies For Social Success (AFSS – www.nyautismcommunity.org) have migrated from in-person gatherings to online meetings. This has made them available to a much wider population, given that many people do not live in proximity to the original meeting locations and that a significant portion of the ASD population does not drive. Meeting a group of individuals who have many of the same traits and face many of the same challenges that one does can be an eye-opening not to mention validating experience indeed. In fact, at every meeting that I first attended, I would hear at least one story told or incident recounted which was so much like one of my own experiences that it was uncanny and even scary; this continues to happen occasionally to this day.
Diagnoses of School-Age Children
Giving an ASD diagnosis to a school-age person is, for a number of reasons, very different from doing so for an adult. Nowadays, diagnosis often takes place in early childhood because parents as well as medical and health professionals are much more likely to be familiar with autism, thanks to the recent explosion in public awareness, than they would have been in the past. Clearly, a small child is far too young to receive such a diagnosis; the appropriate age depends on when the individual is ready to receive such information, which in turn depends on many different factors.
Ironically, by the time someone diagnosed in early childhood is old enough to understand the ASD diagnosis, they may also be old enough to not be welcoming of such. The same is true for someone who is diagnosed when they are already in school. It is just around the time of middle school and early high school that socialization and social skills suddenly become much more important than they had been heretofore. Deficits in these areas, which had at most been a minor liability, can now have devastating effects on the life of a young person. News of a condition that results in such deficits is highly unlikely to be well received. The gifts and benefits that sometimes come with being on the spectrum (e.g., so-called “splinter skills”) are little consolation in the face of something as horrific as social isolation and marginalization, not to mention ridicule and bullying. I have personally known individuals who received their diagnosis at a young age and were anything but happy about it. I have also wondered if, had I been told of my condition at that time in my life, I would have been anywhere nearly as relieved or elated as I was when I finally did receive the diagnosis as an older adult (I suspect that I would not have).
The only solution to this conundrum, in my opinion, is to accompany news of the diagnosis with the immediate provision of as much and as intensive social skills and socialization training, education, counseling, coaching, and anything that addresses deficits in these areas, as is necessary. While the appropriate measures will depend considerably on the individual and their situation, they need to be taken the moment he or she expresses interest in addressing their condition or, for that matter, does not want to accept the diagnosis (as is likely to be the case). What must never be done, however, is assume that the diagnosed individual, due to age, intelligence, or any other reason, does not need any such measures and will simply “learn” or “pick up” these things with time – this can be nothing less than a recipe for disaster.
Regardless of age, the one thing common to any new autism diagnosis is that it can have a profound effect on one’s life and on how one views and deals with the world at large and the people that inhabit it.
Karl Wittig, PE, is Advisory Board Chair for Aspies for Social Success (AFSS). Karl may be contacted at email@example.com.