Autism is not a disease or an entity. It is not something that we must seek out to eradicate. Rather, it is a mode of being, the word “autism” simply being an umbrella term to describe how one relates (or does not relate) to the world. When autism is viewed as an entity, a “thing,” professionals are then led to develop programs that seek to transform the person into something they are not, nor will — or can — ever be. This errant perspective may prove dangerous, as it can function as the impetus to alter the affected person by force, coercion, or manipulation.
If an American travels to a foreign country and knows nothing of the culture or language, he is bound to struggle. If an American travels to a foreign country having learned something of the language and culture beforehand, then relating to others and navigating one’s way become much easier. This illustrates the direction in which I believe that programs to aid autistic persons should be geared — not to change the individual, but rather to help them to be themselves, while also having an understanding of the “mainstream,” and being able to navigate within that realm.
In my approach, there are some core principles that I find of utmost importance:
Presume intellect: Because a person is nonverbal or struggles with communication does not mean they are not intelligent or have nothing to say. Their unique strengths and passions must be explored and utilized.
Behavior is communication: In my opinion, the psychiatric community may be making a grave mistake when it simply seeks to “shut down” or suppress what it judges to be “unwanted” behaviors with powerful psychiatric drugs. Behaviors, even those which may be deemed “unwanted,” could be, for some, the only means to convey their needs or distress.
Self-Advocacy: If professionals, friends, family members of the individual, and people at large wish to understand autism, there must be a willingness to enter the autistics’ world, not force them to enter the “public world” deemed acceptable. We must validate self-advocacy and seek knowledge about the autistic mode of being from those who actually live it each day.
Relationship: To help autistic persons forge emotional connections, make their way through the mainstream, and learn new skills, the keys are relationships. We all must be inclined to forge a bond with the person, to truly seek to understand his experience, unique world, and how he finds meaning — that is, to get to know the autistic individual as a fellow human being. Once a bond is forged, a common healing ground can be created.
Respect: It is paramount for respect to exist and abound, which means that we do nothing to force, coerce, or manipulate those with autism. They should be regarded at all times as being worthy of dignity. Again, the “outsider’s” role is to advocate for and support, not seek to modify the person into someone they are not, or need not be.
I clearly remember a meeting with a five-year-old autistic boy who was nonverbal. He came into my office and began banging his hands on the computer keyboard. The secretary’s response, as is often typical in those with a lesser understanding of autism, was to immediately attempt to stop the behavior. Instead, I told her to let him continue. There is a ball pit in the center of the room, and I told the boy that if he wanted to keep hitting the keyboard, I might have to pick him up and toss him into the ball pit. He continued, so I picked him up and tossed him in. He got out and immediately walked back over to the keyboard. This time, he did not pound the keyboard but outstretched his hands toward it and then fell back into my arms for me to toss him into the ball pit. He giggled and then spoke the words, “Do it again!” I was amazed. Relationship was at the key of this interaction, and an emotional connection was forged. I entered into his world, and he reciprocated and entered mine.