Daily Archives: June 21, 2006

Is this really neutral, everyday terminology?


Let’s say a neurotypical (not just non-autistic, but neurologically typical) child is born. Call her Kate.When Kate is born, she can’t walk, talk, understand what is said to her, or feed herself. Being that this is the case, her parents are well-armed with early intervention and treatment strategies. She gets Breastfeeding Intervention, and later immense, unprecedented progress is made and she graduates to being spoon-fed. She gets Speech Therapy every day in the form of talking to her all the time in a particular specialized way designed to elicit interest, understanding, and speech. Her treatment also includes giving her interesting toys to treat her incredible lack of fine motor skills and to hone her perceptual skills and eye-hand coordination, as well as many other interventions.

These early intervention and treatment strategies are successful, and she eventually begins to walk, talk, and feed herself. But there is a lot she does not know about the world that she lives in. Beginning at the age of four, she is sent to a taxpayer-funded institution for several hours a day of intensive therapy designed to teach her about various aspects of the world. This treatment is wildly successful and in a few years she can read, write, add, subtract, and so forth, and is even capable of comprehending some amount of science and history.

When she is not in the institution, she is doing play therapy and music therapy. Play therapy consists of supervised play with other children who are also in play therapy to get their exercise, learn social skills, and learn more about how to function in the world they live in. She is dropped off once a week for one-on-one music therapy in which she is painstakingly taught the rudiments of the piano. She is, of course, highly limited in her ability to play the piano, but it is thought that this will be beneficial to her emotional and intellectual well-being. Sometimes she also goes to a day program called Girl Scouts with lots of other girls her age.

To teach her responsibility and daily living skills, there is an intervention at home called the Chores Method. Her parents delegate certain simple instrumental activities of daily living to her, such as washing the dishes, vacuuming the carpet, and cleaning her room. If she does not do these things, then a privilege such as watching television or going out to play with her friends is taken away from her.

When Kate is seven years old, the doctor discovers that she is lactose intolerant, a relatively common condition. This explains her crankiness and the regression and stomachache she experiences whenever she drinks milk. When this is treated, her behavior improves both at school and at home. Her parents view this treatment just the same as they view all the other treatments they have been through to get their daughter where she is today.

As Kate grows older, the treatments and interventions are changed to reflect her age and increased progress and maturity. As she reaches the transition to adulthood, she is given pre-vocational training and encouraged to think about what kind of job placement she might want.

She is also encouraged to choose between one of several residential placements. She ends up electing to move to a group home with two other adults who share the same apartment and support each other with paying the bills and daily living tasks. They receive extensive assistance at home from plumbers, electricians, and repair people who are all trained to do what is outside of these individuals’ capacity. Farmers grow, raise, harvest, and slaughter the food that the poor limited souls cannot grow for themselves, and truckers take that food to special facilities called Grocery Stores staffed by even more people. While they have undoubtedly made extensive progress since they were born, it clearly takes a lot of support just for these young women to get through their days and they are highly dependent on other people for their survival.

I am describing, of course, the life of a non-disabled middle-class American kid from birth to early adulthood.

Several people have told me that terms like ‘treatment’, ‘therapy’, ‘intervention’, and ‘symptoms’ are neutral terms when describing their autistic children’s traits and education. Or that these words are justified (for all aspects of their children’s lives, mind you) on the basis that their children have something on the order of lactose intolerance (which, when it happens to non-disabled people, never-gets called a ‘co-morbidity’ either).  Or that these words are basically no big deal.  If so, I would really like to know if they describe their non-disabled children in anything approaching this manner, or if they would appreciate being seriously described in most of these ways for every aspect of their own lives. Because I’ve rarely seen anyone do it.