A lost art in modern conversation (not surprisingly, as we are quite possibly the busiest society in world history) is the definition of one’s terms. To be sure, this requires time and patience; but by clarifying all foundational points, we make the rest of the conversation much easier. Consequently, that is how I intend to begin.
The topic of this issue is care for adults on the autism spectrum, and so I will begin by defining three key terms – namely, care, adult, and autism spectrum.
Here are some of the ways in which Webster’s Dictionary defines care:
“A source of worry, attention, or solicitude; Caution in avoiding harm or danger; The function of watching, guarding, or overseeing; To be concerned or interested; To have a liking or attachment” (Care, 1984, p. 230).
Notice that all of these elements are broadly applicable. To name just one example, there are many ways of “watching, guarding, or overseeing” that include neither constant surveillance nor parental oversight.
Next, adult. Let us turn once more to Webster’s Dictionary:
“One who has attained maturity or legal age; A fully grown, mature organism” (Adult, 1984, p. 80).
Here, it is the concept of maturity that covers the broadest range. Chronological maturity is universal among the adult population. Physical maturity is, of course, nearly universal (barring certain types of disability that cause stunted development). And when it comes to psychological maturity, we find by far the greatest diversity – we might even call it a “spectrum.”
And this, of course, brings us to the autism spectrum. This term designates a variety of conditions that share certain commonalities such as social deficits, sensory irregularities, literalistic thinking, and idiosyncratic habits/interests. At one extreme is the non-verbal individual with no functional life skills at all; at the other, you have geniuses like Bill Gates and Albert Einstein.
Okay, so we have three terms, each covering a wide span. How do they fit together?
First of all, it is important to remember that the autism and maturity spectra overlap at various points. In other words, it is possible to be both on the autism spectrum and a fully functional, mature adult. For convenience, I will refer to such adults as HFAAs, or “high-functioning adults with autism.”
Precisely because HFAAs are not as visibly affected by their diagnosis, they tend to fall through the cracks. They are just capable enough to be deemed not in need of any help, but their disability gives them just enough trouble to prove socially and professionally prohibitive.
As you may have guessed, this brings us back to the concept of care. The care that HFAAs require will obviously differ from the type of care appropriate to their brethren further down the spectrum, and probably stands in less need of various funded services. The onus, I submit, rests on family, friends, coworkers, and other close acquaintances.
What does this “onus” look like? How does one give HFAAs the help they need without being overbearing? On the other hand, how does one give them their independence without setting them up for failure?
The answer to these questions is going to depend upon the nature of one’s relationship with any given HFAA, as well as upon the setting of that relationship. With that in mind, I will explore the aforementioned questions within the context of two of the most typical human relationships.
Professional relationships are important, as the workplace is where people spend most of their waking hours. The Webster’s definition of care applicable here is the one involving concern and interest. All employers have a vested interest in their human resources and in the success of each employee.
For those employing people on the autism spectrum, my advice is this: Above all, be patient with the extra hurdles over which your HFAA employees, through no fault of their own, must leap. Try to respect the fact that for them, certain capacities that may be taken for granted in most people require a much wider learning curve and far more conscious and concentrated effort.
For that reason, it is imperative that you acknowledge your HFAA employee’s incremental achievements. Do not approach the matter with the following attitude: “He should not be proud of himself for achieving something he should have been able to do in the first place, and neither should I. He is doing only what he is obliged to do, and that fairly late in the game. What is more, the fact that he is still not measuring up in other areas is inexcusable.”
It is tempting for busy and overworked employers to take this stance, but the attitude is ultimately counterproductive. It will only serve to discourage people already sorely tempted to discouragement by their struggles.
This does not, however, mean sitting back and allowing your HFAA employee’s difficulties to negatively impact your business. One of the traits of truly effective bosses is that they know their employees. They know their unique personalities, talents, strengths and weaknesses, and how these can fit into the overall schema of the workplace. By assigning to their employees roles in which they will likely thrive, they help set them up for success.
For employees on the autism spectrum, who bring unique and invaluable talents to the table, this is indispensable. As they progress, always be ready to commend them on what they are doing well. In addressing areas of weakness, present them as opportunities for growth. In this way, you will be exercising “boss-ly care” at its best.
I am using this term to refer broadly to parents, siblings, unofficial mentors, and anyone else to whom the other Webster’s definitions of care might apply. The definition I wish to emphasize, however, is “(c)aution in avoiding harm or danger” (Care, 1984, p. 230).
Good intentions by themselves are seldom enough, and even the best of intentions in the best of people can well suit the bricklayers of hell’s proverbial highway. It is natural that you should worry about your HFAA children, siblings, etc. It is proper that you should pay attention to where they need guidance, and to patiently and prudently provide that guidance. It is, furthermore, responsible of you to encourage their ambitions while also keeping in view a realistic assessment of the obstacles an autism spectrum disorder will place in the way. But whatever you do, don’t let care turn into limitation of their horizons.
Example: Johnny says he dreams of going to Europe on vacation. Your first reaction is to say something like this: “Oh no, Johnny. You have Asperger Syndrome. You have trouble finding your way around new places. You’re also very innocent, and could easily be taken advantage of. A trip to Europe isn’t for you.”
You must resist the urge to respond in this fashion – especially if you want to maintain high expectations for the individual under your care. This may seem to be an arbitrary connection, but think about it: If you discourage your HFAA loved ones’ passion-filled ambitions, this can only serve to weaken motivation and cripple initiative. Hence, while your intention is to care in the sense of steering away from danger or hurt, you may in fact be indirectly endangering two of their most valuable human assets: Freedom and (by extension) responsibility.
A better response might resemble the following: “That’s an excellent goal, Johnny, and I would love to see you achieve it. Now there are just a couple of practical matters to consider. You do have a little trouble finding your way around in unfamiliar places. Also, you can be a little too trusting sometimes. So before you commit to taking a trip to Europe, we should maybe work on these things a little bit. [If you or Johnny have acquaintances who have gone to Europe, perhaps you could arrange for him to speak with them about these matters]. But if this is what you really want, we can get you there.”
Notice that this response is both realistic and encouraging. Both are essential elements of care.
Needless to say, I have merely scratched the surface of this crucial topic. But as an HFAA myself, I have tried to offer some heartfelt insights that will hopefully be of help.
Daniel Crofts is a 31-year-old man with Asperger Syndrome. He has an MA in English/Literature from the State University of New York College at Brockport and experience in the fields of freelance journalism, substance abuse prevention, online higher education, and service to people with developmental disabilities. In addition to working at Genesee County Chapter NYSARC, he periodically writes articles for The Batavian (a local online newspaper) and Lee Publications. He may be contacted at email@example.com.
Adult. (1984). In Webster’s II new Riverside University dictionary. Boston, MA: Houghton Mifflin.
Care. (1984). In Webster’s II new Riverside University dictionary. Boston, MA: Houghton Mifflin