There is so much talk about high functioning and low functioning in Autism and other special needs. Before I get on my soapbox I want you to know that I don’t believe the value of a person is based on their ability to function one way or another. The most disabled person has value to society.
My definition of high functioning and low functioning doesn’t necessary fit with other definitions which apply it primarily to IQ. I think high and low functioning has more to do with the ability of a person to function in the world. It is my belief that it is a mixed bag. Someone who is high functioning in an educational setting maybe low functioning in terms life skills, social interaction and communication. It appears that many people are higher functioning than might otherwise appear and in some cases, the reverse is true.
I just reviewed again the CNN Presents: Autism is a World; aired in May 2005 (we taped it). This presentation is Sue Rubin’s story and is written by her. Sue is a 26 year old with Autism. She was labeled retarded until she was 13 when she learned facilitative communication. Her intelligence became known for the first time. Sue is an example of what I mean about high functioning and low functioning being interchangeable.
If you were to pass Sue on a street, you would probably see her as retarded not being able to discern her high degree of intelligence. She is substantially nonverbal using a keyboard to communicate for the most part. Her tongue protruded over her upper lip a good part of the documentary. Involuntarily movements and noises are pretty frequent. She says that she increases her appearance as retarded by carrying around plastic spoons with her most of the time. The spoons are her comfort. Her high intelligence would definitely place her as high functioning by most people’s definition.
Sue is able to get funding for 24 hour staff for her in her own house because she would not be able to dial 911 or do many of the things necessary for an independent lifestyle. She states she will always need help for communication and life skills. At the same time Sue is a junior in college majoring in history and clearly bright. She gives presentations and is a strong advocate for the disabled.
My greatest fear is that many people are trapped in a low functioning world where they could be involved in higher functioning activities for at least part of the time. In order to participate in these higher functioning activities opportunities have to be adapted to conditions most useable for the individual. I truly believe there are other Sue Rubins locked in institutions or ill-fitting programs because they didn’t have the support to show hidden strengths.
Parenting Your Complex Child (AMACOM Books Spring 2006) attempts to help parents and caregivers to explore what will assist an individual in functioning to the degree reasonable for the person. Complex children need help to be who they are as a person, whether high or low functioning or mixed bag.
Of the successful Autistic persons I have been studying recently one thing stands out: they had support systems willing to find out what worked for them. In her writing, Dr. Temple Grandin frequently credits her mother for helping her succeed. The support system for Sue Rubin by her parents is clear in the above referenced documentary. Parents and caregivers make a substantial difference.