I have copied this whole thing into my blog so that I can find it later, because its tremendous. Also, point number three does a very nice job of explaining why i never refer to Dominic as "Autistic", instead I say he "Has Autism". Huge difference.
From Presuming Intellect: Ten Ways to Enrich Our Relationships Through a Belief in Competence
by William Stillman
From Presuming Intellect: Ten Ways to Enrich Our Relationships Through a Belief in Competence
by William Stillman
- Don't define people by their diagnosis.
Remember playing tag? Nobody wanted to be IT. And if you were IT, you
wanted to get rid of IT because being IT was stigmatizing, a detriment,
and something undesirable—that was the game; being IT was to be avoided
and feared. Remaining IT longer than we'd like becomes challenging to
catch up to the others, to belong, and to feel accepted.
When we define someone by their diagnosis, our perception of them may become something to be dreaded: someone defective, someone who has the IT with which we don't wish to risk an association of any sort. For that person, this attitude is the lubricant that greases the wheel for the vicious cycle of a self-fulfilling prophecy. That is, when people define you as having IT and that's all you know of yourself, you will reflect back precisely what others project upon you. This is a natural and defensive reaction; and if you don't speak or can't articulate your feelings, your outpourings of "behaviors" will only further validate the diagnosis (hence the vicious cycle).
- Shatter myths and stereotypes.
Clinical diagnosis is but a framework for explaining "behaviors" or
atypical attributes. This may include judgments about severe
intellectual and physical limitations, and further speculation about
other incapacities. It can also set a negative precedent of using "us
and them" language in labeling someone as different, retarded, autistic
or mentally unstable. However, it wasn't so long ago that persons who
were epileptic, homosexual, or even those left-handed, were labeled as
mentally deviant. This led to unfair, inaccurate and unjust myths and
All of psychology and psychiatry is educated guesswork; no single clinician can state with absolute authority what someone experiences in the way that medical science usually can. In considering three factors, insight, foresight and hindsight, we need to encourage others and ourselves to look beyond our history of deficit-based labeling in favor of perceiving a person's humanity—regardless of their diagnosis or way of being. The label which may perpetuate clinical myths and stereotypes is an incomplete truth; it should be but one point of reference in fully.
- Don't talk about people in front of them.
Have you ever been in conversation with two or more people and someone
talks out of turn, interrupting, belittling or disputing your
contributions? Or have you temporarily lost the use of your voice as
others tried to interpret your wants and needs? How did either instance
make you feel? If we don't value what people have to offer, especially
if they are unable to speak at all, we send a message of superiority
versus inferiority. When we define people by their diagnosis and
perpetuate myths and stereotypes, we presume the authority to talk about
them in front of them as an entitlement. After all, it shouldn't matter
if we share information about someone's "behaviors" with their parents,
doctors, and others in front of them because they are retarded,
autistic, and unaware—right? Wrong!
Presuming intellect requires us to believe an individual's intellectual competence is intact. This means we do not speak about them in front of them in ways that are hurtful, embarrassing or humiliating. We must also gently but firmly advocate by disallowing others from doing it as well. We need to include people in conversation by directing questions to them not about and around them.
It also means we employ person-first language (boy with autism, not autistic boy) because it compels us to be conscious of the words we use when discussing someone. So, before you speak, ask yourself if you would welcome someone talking about you in precisely the same way without a voice to defend yourself. We cannot have a mutually respectful and trusting relationship if we talk about someone in front of them.
- Interpret "behavior" as communication.
Have you ever been so angered that words escaped you in the moment, and
the only way you could express yourself was by screaming or throwing
something? You probably felt justified in your actions because it was
the only way you could vent your expression of extreme upset. But what
would life be like if you could never retrieve the words you wanted when
you needed them and you always seemed to be grappling with overwhelming
or frustrating circumstances that caused you to react in extreme ways
as the only option? In the same way you could rationalize your own
behavior, let's remember that we all have good reasons for doing what
we're doing, and we're doing the best we know how to do in the moment.
You wouldn't want to be defined or stereotyped by the times you just had to yell and shout would you? We need to extend the same courtesy to others by not jumping to conclusions about their "behaviors" as willful misconduct, noncompliance, or "attention seeking."
You may respectfully deconstruct "behavior" in terms of communication by appreciating the following three reasons why people may engage in what others call "acting out" or "aggressive behaviors." 1) The inability to communicate in ways that are effective, reliable and universally understandable. 2) The inability to communicate one's own physical pain and discomfort in ways that are effective, reliable and universally understandable. 3) And the inability to communicate one's own mental health experience in ways that are effective reliable and universally understandable.
- Offer communication enhancements and options.
We have become a culture that values instantaneous, rapid-fire response
to our need for information. This includes the immediacy with which we
communicate to one another through e-mail, instant messaging, text
messaging, and round-the-clock accessibility via cellular telephones.
When others do not communicate with us on par with the manner with which we've become accustomed, we may lose patience, become bored or distracted, or dismiss their communication attempts altogether. This may be especially true of those challenged in articulating language such as small children, the elderly, and those with a neurological difference resulting from stroke, Tourette's, Alzheimer's, Cerebral Palsy or autism. We may wrongly interpret the inability of others to speak as quickly as we'd like as an incapacity when, in fact, most often just sensitively allowing for process time beyond what is standard is all that is required for those individuals to cognitively retrieve spoken language.
In providing support to others, we must acknowledge that not everyone is neurologically "wired" for verbal communication; this is not the same as not having something to say. It is unacceptable to accept that because someone doesn't speak, there's nothing we can or should do.
There are myriad communication options and opportunities to offer as speech alternatives. These may include pointing to "yes" and "no"; some basic sign language; photographs and symbols; computers and other keyboards; and technology of all kinds. The person will guide us to the device, or combination thereof, that makes sense for her. Engaging in conversation by discussing someone's most passionate of interests in the context of a mutually-pleasing relationship is a great incentive to entice someone into trying a communication alternative that is new and different. Honoring another's communication requires us to acknowledge that we might not like what we hear.
- Offer age-appropriate life opportunities.
When we are unpresuming of an individual's intellect, there is a belief
that the individual likely possesses a juvenile aptitude, childish
thought processes, and skills on par with someone who is chronologically
much younger. This stereotype of the "perpetual child" leads some to
interact with the stigmatized individual in ways that are pretentious,
patronizing, and insulting. It also means that we limit the life
opportunities that we offer someone in favor of preserving the
"perpetual child" mindset. Instead, we provide adolescents, adults, and
even persons who are elderly, with dolls and toys, and reading and
viewing material suited and intended for very young children.
You can only know what you know; and if someone is only ever afforded such opportunities, a childlike affect persists and permeates our interactions. But, if we presume intellect and acknowledge that an individual's "behaviors" might really be cries of boredom or offense with educational curriculum, vocational options, or recreational activities that are dehumanizing, we will know better how to partner with an individual in planning age-appropriate learning, work and free-time opportunities. The greatest obstacle to implementing this is our own attitude in how we perceive supporting someone with a different way of being.
- Make compassionate accommodations.
Have you ever been trying to read or listen attentively to something,
and someone near you is constantly coughing? You can react one of two
ways: either with annoyance, or with consideration. Reacting with
annoyance will only foster bad feelings between both parties; you may
feel as if the person should know to be more socially considerate, and
the person, who may be struggling to care for themselves, may feel hurt
Reacting with consideration may include gently approaching the individual to offer them a cup of water, a mint or lozenge, or to simply commiserate about a human experience we've all endured at one time or another. Responding with the latter approach requires discounting initial impressions and making a compassionate accommodation, not only in our thoughts but in our deeds.
In considering compassionate accommodations for the individual with a different way of being, think in terms of prevention instead of intervention. Prevention means knowing fully what an individual requires in advance of a situation, environment, or activity in order to feel safe and comfortable and able to participate. This relates to the ability to think, communicate, motor-plan movement, and assimilate with the senses. It means foregoing the antiquated model of multiple, overwhelming community integrations (which often sets the overloaded individual up for an intervention) in favor of simple, subtle, and interest-based activities in a qualitative relationship context.
- Respect personal space and touch.
If we perceive someone in our care to be less than equal, be it a
child, adult or someone elderly, we seem to take ownership of touching
their physical being with a sense of entitlement in order to gratify our
own needs. For example, instead of allowing someone the time required
to bathe, eat or dress for themselves, we may grow impatient and begin
handling them ourselves to "get the job done." Or, in desiring to be
affirmed, we initiate physical touch by embracing, back-rubbing or
hair-tousling—all of which may be intrusive, unwelcomed and without
permission. (In recent years, some colleges have even implemented "touch
protocols" for dating co-eds to avoid misinterpretation of any sexual
intent.) Conversely, many of us are extremely uncomfortable brushing
against others in the cramped quarters of an airplane, bus, subway, or
Personal space and touch are a matter of individualized perception for each of us based upon our culture, upbringing, and relationship experiences. A friendly slap on the back, which you've been conditioned to convey as communicating "hello," may send shock waves through the nervous system of the recipient. Instead, respectfully await the invitation in. Await the acknowledgment that coming closer, touching, even eye gazing, is welcomed once it's communicated by the person with whom you are developing a relationship.
The invitation in may be as subtle as someone who rarely makes eye contact locking eyes with you and tracking your movement, or the individual who carefully, gently, extends a finger to initiate touching you. Be very mindful of the mixed messages we send to children whom we routinely embrace and then confuse once we define such as "inappropriate" come adolescence. It is also fair to state your own acceptable preferences for touch limitations.
- Seek viable employment for others.
The system that serves people with different ways of being endeavors to
be altruistic and well-intentioned but it is an industry nonetheless;
one that, in seeking viable employment opportunities for its clients,
attempts to conjoin with mainstream industries that may be unpresuming
of intellect. More often than not, this translates to menial tasks that
are believed to require no thought: adult training facilities,
repetitive factory work, janitorial cleanup, emptying trash
receptacles, or replenishing the fast-food salad bar to name a few. For
most others, such jobs are temporary steppingstones; but for persons who
are perceived as largely incapable, these employments have become a
norm that perpetuates stereotypes.
In seeking to pursue viable employment, we need to think in terms of cultivating gifts, strengths, and talent areas as early on in one's life as possible. Begin by identifying an individual's most passionate of interests—those subjects or topics for which she wants most to talk about, watch, draw or write, reenact, engage with, and read about. When we value passions instead of labeling them as obsessions (unless they seriously impair one's quality of life), we are better poised to creatively envision a blueprint of possibilities for one's future. This may include higher education, virtual employment via the Internet, or self-employment opportunities.
- Acknowledge that we are all more alike than different.
Remember the last time you drove somewhere and, upon arriving, had no
recollection of the drive? How about when you hear a song you haven't
heard since high school, and memories you associate exclusively with
that era come flooding back? Or what about the times you've halted,
blocked, stuttered or stammered over calling up someone's name? These
are examples of common neurological blips, misfires and disconnects that
make us all kindred in our humanity. While others may have traits that
appear more exaggerated, like physically rocking or handflapping, you
may catch yourself engaging in a similar action if you've been shaking
your leg, tapping a pen, or twirling your hair or a piece of jewelry.
When we embrace the philosophy of presuming intellect we are in a position to become agents of transformation. Doing so requires forgiveness of our own ignorance—which need not hold negative connotations—as well as seeking the forgiveness of others whom we have not held in the same regard as our typical peers.
We have become a culture that elevates perfectionism to exalted heights, which is an unrealistic and potentially damaging aspiration. When we acknowledge the kinship we share with one another, we are most apt to value diversity in our lives within the context of mutual respect, co-collaboration for greater good, and the presumption of intellect.