When I was finally diagnosed in late 2000, public awareness about the autism spectrum, especially the milder variants such as Asperger Syndrome as it was then known, was at best minimal. In particular, the vast majority of mental health professionals (the service providers most likely to address issues facing autistic individuals) knew very little about autism and virtually nothing about Asperger Syndrome if they had even heard of it. I can even remember when a common reaction to the name of my condition (while speaking to mainstream audiences) was one of laughter because the name sounded like “ass-burger.” I actually resorted to using the correct German pronunciation to avoid such responses. Such limited awareness on the part of the general public, and particularly among the service providers that autistics were often dependent on, did not serve our community well at all.
In the two decades since that time, autism awareness has improved dramatically, to the point where it even became part of our popular culture. While this has done an effective job of portraying some more common autistic traits and behaviors, even if in an exaggerated or less-than-accurate manner, at least there is more widespread knowledge of the challenges faced by those on the autism spectrum. Many common media depictions of autistics, such as technology entrepreneurs, scientists in academia, and brilliant surgeons, are greatly misleading, considering the alarmingly high unemployment rate in our community (even among very talented and sometimes gifted individuals). As an electronics engineer who had a career in research and development, I am considered exceptionally successful when compared to most of the autism community, even though I was never promoted during my nearly 30-year career (largely by choice) and was hardly a tech billionaire! As for behavioral traits, their representations are a little better, even if they still leave much to be desired. In any case, despite all the misconceptions, at least there is much wider awareness about the autism spectrum among society in general and among service providers in particular.
Educating Service Providers About Autism
There are two principal categories of service providers, regardless of specialty: those who specifically work with the autistic population and those who serve the general public. The first category, which was minuscule in number when I was first diagnosed, is largely quite knowledgeable about our challenges and behaviors. They are likely to have had formal education and/or training about the autism spectrum, not to mention far greater experience in dealing with a variety of autistic individuals. As such, they are familiar enough with most autistic issues to effectively serve our community. Thanks to the increase in autism awareness over the past two decades, their ranks have increased considerably, even though there is still a great need for many more of them.
However, the situation is somewhat different for those who serve the general population. Although increased public awareness has helped to improve this, there are still enough misconceptions, along with deficiencies in education and training, that need to be remedied.
Service providers often serve distinct communities (ethnic, racial, religious, etc.). They can either be members of that community themselves or learn about it through formal or continuing education or by immersion to better appreciate its cultural differences (along with other issues that it might face). This is very helpful, if not essential, for serving that community. Usually, such communities are distinctly identified and either live largely in the same geographic locales or urban neighborhoods (as with some ethnic groups) or regularly congregate in specific locations (as with religious groups).
In the case of autism, however, the population is evenly distributed (not to mention often unidentified); as such, it is rarely concentrated in any location or even region, and most members need to be served on an individual basis. Still, however, service providers need to be aware of the needs, challenges, and other issues facing the autistics that they are assisting.
Unusual Issues Concerning Autistics
Unlike most other communities, autistics often have a host of unusual issues not as common in other populations. There is also much more variation in the needs and challenges among members of our community than is the case for others. The old saying that “if you have met one person on the spectrum, you’ve met one person on the spectrum” applies in this instance as much as in any other, if not more so.
For instance, sensory sensitivities are nearly universal among autistics, but different individuals will experience these with different senses – for example, some will have auditory sensitivities, some will have visual sensitivities, and so forth, with some having such in two or more senses. Also, with the same sense, different individuals may be sensitive to different stimuli, such as diverse types of sounds (e.g., high-pitched whistling or sudden booms) for those with auditory sensitivities. Even when service providers are aware that autistics can have these sensitivities, they have no way of knowing which will affect a particular individual; they will need to determine, on a case-by-case basis, which ones each person is susceptible to so that they can be avoided.
Other issues can involve instructions that need to be followed. Autistics are known for being very literal in their understanding of language. They are also known for being resistant to changes in personal routines. These considerations both come into play in situations where instructions given by service providers need to be followed correctly. Consequently, providers have to be aware that both of these issues are common with autistics, to state things in such a manner that there is as little room as possible for misinterpretation or misunderstanding, and to follow up to make sure that directions have been followed correctly.
One well-known instance of following directions involves patients taking prescription medications, particularly psychiatric medications. It is known that patients with certain psychiatric conditions refuse to take a prescribed medication. In such cases, conventional wisdom is that they feel they do not need it, do not like how it makes them feel, or simply do not want to take it. I should point out that, not having any medical or healthcare background, I only know about this from personal and anecdotal accounts given by others.
In the case of an autistic, following a prescribed treatment of any kind, if it interferes with existing personal routines or habits, may very well be resisted. In such cases, the service providers have to be aware of this possibility. They also need to make sure that directions are as explicit and unambiguous as possible and that the necessity of their being correctly followed is made exceedingly clear. Assistance with incorporating such instructions into personal routines may be indicated as well. Subsequent follow-ups to make sure that all of this has happened are also called for here. One potential bright spot is that because autistics are known for being very diligent in maintaining routines, once these have been properly established, they will likely continue to be followed without further intervention.
This very same adherence to regular routines, however, can, in some cases, be problematic in itself. I have personally known instances where an individual who took a large number of prescription medications made a daily ritual of consuming them without considering their actual necessity at the time. In particular, they might continue taking medication indefinitely, even after the condition for which it was prescribed had subsided. This led to overmedication, duplication, and even adverse drug interactions. In these cases, regular monitoring is needed to make sure that such situations do not happen. Once again, my knowledge about this is limited to individuals that I have personally known, either through my involvement with the autism community or in my personal life.
In all these cases, an understanding of the distinct types of situations that can arise when working with autistics but may not otherwise be common is needed on the part of service providers in their dealings with the autism community. This is probably best done by educating providers as extensively as possible (or feasible) about the autism spectrum.
Autistics Can Help Educate Service Providers
Perhaps the best resource for educating service providers about the needs, challenges, and other issues of the autism community can come from autistics themselves. Because of the wide variety of autistic experiences and challenges, groups consisting of a variety of autistics who can recount experiences and describe challenges that are applicable or relevant to the service being provided can be enlisted in this effort. This is not just an instance of “nothing about us without us”; legitimate as that may be, the compelling reason for this is that autistics, by sharing the knowledge they have about the condition they live with, can make substantial material contributions in improving the quality of services that are essential to their community.
As part of my participation in AASET (Autistic Adults and Other Stakeholders Engaged Together – www.autistichealth.org), I have served on the Community Council of stakeholders, which includes autistic self-advocates who provide our own perspectives for a number of projects. Parts of these efforts involved the preparation of materials for service providers who will be working with autistic individuals. This may be a good model for what could be done in the future to further educate providers in a wide variety of different capacities for helping the autistic population.
For example, this may take the form of videos, printed materials, and other media that can be readily delivered to providers who work with our community. Members of the community will, in turn, need to be recruited for these efforts. This can be done by impressing upon them the importance of and need for their participation, as well as (when appropriate) financial or other inducements.
The bottom line is that however this is done, service providers who work with any members of the autism community need to be educated about the needs, challenges, and characteristics of the individuals on the spectrum that they will be serving.
Karl Wittig, PE, is Advisory Board Chair for Aspies for Social Success (AFSS). Karl may be contacted at kwittig@earthlink.net.
