In the more than two decades since my diagnosis, I have attended countless autism community events of just about every kind, not to mention numerous others in which issues concerning autism somehow came up. In virtually all of these, I routinely disclosed that I was on the autism spectrum and on every occasion was warmly accepted and welcomed by all those present (in fact, more so than at many other times in my life). As it happens, there was only one exception to this, which took place when I attended the screening, at a local cinema, of a small independent documentary describing the challenges faced by two more-severely autistic children. During the discussion that followed, the film makers and subjects made rather hostile remarks about “so-called high-functioning autistics” who did not face difficulties that were anywhere nearly as serious and in fact were sometimes very successful. I immediately realized that they were talking about individuals like myself and felt very uncomfortable. I knew better than to disclose that I was on the spectrum and left the theater as quickly and quietly as I could, understanding that I was not welcome there.
What I experienced at this event was an example of what is probably the most contentious of the many divisions that exist within the greater autism community. While I am the first to admit that autistics like myself have not experienced anywhere near the kinds of challenges regularly faced by individuals like those portrayed in that film, have been very fortunate, and would never compare my difficulties to any of theirs, the fact remains that many of the traits, behaviors, and challenges that I have lived with my entire life are nevertheless typical of the autism spectrum, even if to a much milder extent. One especially memorable encounter that drove this home for me was a conversation I had at an autism event with the mother of two young adults on the spectrum. One of them was so impaired that he needed to live in a residential facility, but the other was at the time attending a prominent science high school at which he was taking advanced-placement courses in calculus and physics – just as I had done back in my own day. This became even more uncanny when I described, as the hors-d’oeuvres were being passed around, my lifelong selective eating issues, and she responded that her son also had this very problem! Knowing that autism has a strong hereditary component, I realized that these two individuals were at different ends of the same autism spectrum, as by then I knew was the case for me as well.
Portrayals in the Popular Media
One significant cause of misunderstandings about the milder end of the autism spectrum involves the numerous portrayals of such individuals in the media and popular culture. These have resulted in the widespread impression that such autistics are typically tech billionaires, brilliant physicists, and in one case even a gifted surgeon. While these things are certainly not impossible, and may actually occur in some cases, most less-impaired autistics have never enjoyed anywhere near this level of success. The reality, even for many talented autistics, is that they struggle to find and maintain employment and perhaps to live independently. Clearly, the media portrayals do a great disservice to the more-impaired autistics who face formidable challenges and will almost certainly never attain such degrees of accomplishment; this has been recognized by the autism community. What is also true, however, is that even among the most talented autistics (i.e., the twice-exceptional) such achievement is quite rare – it is rare enough among the typical population, so the very idea of it being common in the autism community is simply absurd! While there certainly are many autistics with backgrounds in these areas, an alarmingly high percentage of them are either unemployed or grossly underemployed. Throughout the years of my involvement with the autism community, I have encountered countless such individuals. As welcome as it may be that society and the media have finally recognized the breadth of the autism spectrum (this was hardly the case when I was first diagnosed), the recent popular images and conceptions of autistics have hardly done them any service.
Many talented autistics, with areas of strong special interest and ability, are not able to succeed in school because of unaddressed learning disabilities or difficulties in adapting to some demands of the higher-education environment. Even among those who do, finding employment is far more difficult than for their typical peers because interpersonal aspects of the job-seeking process (e.g., interviewing) can be challenging for them. For those who do find jobs, remaining employed is often a substantial challenge, once again due to the social, political, communication, and other interpersonal aspects of the workplace. Of the numerous autistics I have met who reported job losses, in virtually every case it was because of these factors, and never attributed to incompetence, negligence, malfeasance, absenteeism, or any of the more common reasons typical workers are dismissed or terminated.
Even my own case as a technology professional illustrates the erroneous nature of these portrayals. Within the autism community, I am considered highly exceptional because, after a successful student career, I worked as an electronics engineer in research and development at major corporate institutions for nearly thirty years, to the point that I am self-conscious about it. When compared to the “yuppie”-era standards of the 1980’s and 90’s, however, this same career bordered on the laughable because I was never promoted into any level of management (in fact, I wisely chose not to be), and most certainly did not become a technology entrepreneur, let alone a billionaire. Popular conceptions of less-impaired autistics as such are certainly misleading and erroneous, to put it mildly.
Polarization in the Autism Community
Although there are numerous divisions within the autism community, both among autistics themselves and those who care for or work with them, by far the most contentious, in my opinion, is that between the less-impaired community (of which I am a member) and the community of more severely challenged autistics. As I mentioned earlier when describing my own experience, there is substantial hostility on the part of those who have severely autistic individuals in their lives, towards those of us who identify on the autism spectrum but do not live with anywhere near that level of challenge. I have always felt that there is no need for such resentment on their part.
First and foremost, the resources needed for less-impaired autistics are small to miniscule when compared with those needed for the more seriously challenged. While the latter group will need intensive (and expensive) services throughout their lives, the former will need far fewer of these by comparison. More-impaired autistics, who often cannot live independently let alone hold a job, will need to live in residential or assisted-living facilities (perhaps for their entire lives), require extensive social services, and be supported by disability or other benefits. All these things constitute significant costs to their families, taxpayers, and society at large. It is understandable that those caring for them are concerned that available resources (which are already far too limited) will be diverted for individuals who are not nearly as challenged. The good news, as far as I am concerned, is that, with adequate early intervention, this will not be necessary.
Given the dramatic improvements in public awareness about the autism spectrum, autistic children are nowadays routinely identified and diagnosed either by professionals retained by their families or by the schools that they attend. This can lead to early interventions that will in turn help to mitigate future challenges they would otherwise face. The result will (hopefully) be a much higher percentage of less-impaired autistics who are able to live independently, find employment and, as such, contribute to society rather than be a drain on it. Furthermore, these interventions can usually be performed by existing infrastructures (e.g., school psychologists, counselors, teachers, healthcare professionals, etc.) and as such be of minimal cost to families, taxpayers, and society. They will not significantly drain the resources needed for those requiring more intensive services.
Meeting the Needs of Less-Impaired Autistics
Despite all these concerns, less-impaired autistics constitute most of the greater autism community. This is mainly due to the expanded autism spectrum diagnosis that has been used since 1994, when DSM-IV introduced criteria for less-severe forms of ASD such as Asperger Syndrome and PDD-NOS, all of which have remained even with the changes introduced in DSM-5.0. The result was a dramatic increase in the prevalence of autism from a few cases in every 10,000 people to about 2% most recently. As such, we are too large a population for our needs to just be ignored. Thankfully, increased public awareness, combined with these large numbers, make that a very unlikely possibility at this point.
As much as early interventions for autistic children will likely improve outcomes in their future, the fact remains that there are still large numbers of undiagnosed autistics. Some of these have managed, despite their challenges, to successfully become independent and pursue jobs and even careers (as was the case with me), but sadly there are many who were not so fortunate. The high prevalence, which almost certainly holds for the older population as much as it does for diagnosed school-age children, means that there are many who “fell through the cracks,” and have either been misdiagnosed with another condition (which they may not suffer from at all), or simply been non-diagnosed (as happened with me). This is especially true for older adults past a certain age for whom proper diagnoses, let alone public awareness, did not even exist when they were children. Consequently, there are large numbers of less-impaired autistics in the overall population who have never been identified, let alone diagnosed, and need assistance. In some cases, they may have received it for different (if not correct) reasons and by alternate means. If such individuals were identified as being on the autism spectrum, perhaps the proper interventions could finally be provided for them, which would in turn lead to improved outcomes for many and a reduction in the costs to society.
For any of this to happen, however, we will need as much support from the entire autism community as we can get. The fractured state of our community will not help further this end, and if anything is greatly counterproductive. We can and need to do better.
Karl Wittig, PE, is Advisory Board Chair for Aspies for Social Success (AFSS). Karl may be contacted at firstname.lastname@example.org.