It's a small, small world...

For people with autism, it can be a small world... and that’s not necessarily a good thing. In order to avoid this fate for our children, it’s important to understand how it starts, and how we can fight it!

When a child is first diagnosed, often parents have already felt their world shrink because a toddler with autism may be too unruly to go into a children’s library or family restaurant. I remember my child singing at the top of her lungs in a post office. It was so loud that a kind stranger offered to pick up my parcel while I waited outside! In addition, because of her beautiful singing (and it was beautiful), we did not enter a family restaurant for the first two years of her life (we eventually found a Chili’s restaurant that cranked up the music so loudly that we couldn’t hear ourselves think -- but, back then, that was a good thing)!

The child with autism starts shaping the behavior of the family and, before you know it, that child is left behind on family outings. As early as age two, tracking into special pre-schools or segregated treatment programs has begun (I’m referring here to programs that do not have reintegration as their goal). Many parents are encourage to give up quickly, and accept the reality that their child’s behaviors will not be under control enough to participate in simple pleasures unless they “re-engineer” the environment for them e.g. turning the music off at a public carousel so the child can enjoy the experience. The pressure to segregate and accept socially problematic behaviors as part of autism comes at the parent from all sides (the Positive Behavior Support (PBS) folks are particularly guilty of this).

There is a way out, though! Practitioners using Intensive Behavior Treatment (IBT) target these various behaviors and generally eliminate them, or modify them to be acceptable. For example, to control the singing, my child was taught to write down the lyrics to her songs, and then eventually write out the song using musical notation. This behavior took the place of singing. Eventually, she was able to listen to an ipod so she just looked like a surly teenage who was bored with the family conversation. That allowed us to go to restaurants peacefully (and not bother people in the next booth)!

When the child matures, most self-stimulatory behaviors have either been eliminated, modified to be socially acceptable in public, or taught to be acceptable based on time and place e.g. at home, in the bedroom or bathroom. It is much easier to do the behavioral “heaving lifting” when the child is young, although I’ve seen many behaviors successfully modified in adults. A skilled practitioner will understand the importance of shaping certain behaviors to be acceptable, and will enlighten the parents as to why a seemingly cute behavior in a two year old will not be cute in a twelve year old, or twenty-two year old.

There are behaviors in a subset of children with autism that do not seem to be self-stimulatory in nature, but rather, seem to be obsessive, compulsive. For these children, controlling behavior is somewhat more difficult. The practitioners use the same techniques to eliminate or control behavior; however, these children seem to need more behavior management throughout their lives; the reality is that the child’s behavior depends heavily upon the skills of those in the child’s life. In short, the better the parent or caregiver is at mastering behavioral techniques, the more expansive a world that child, and eventual adult, will experience.

Unfortunately, we live in a norm-based society where social rules are, for the most part, followed. When a child with autism grows into adulthood, the intolerance for breaching social convention crescendos, often with horrific results for the person with autism. Therefore, it is very important to eliminate anti-social behaviors in a child that will become entrenched and have negative implications in adulthood, ultimately shrinking their world.

Let’s make sure that for people with autism, it’s not a small world after all...