Facilitated Communication Symposium Whittier, CA April 3, 2003

Myths About Autism and Mental Retardation

Sue Rubin

As a really autistic person I am definitely qualified to address the topic of myths about autism and mental retardation. The first myth I would like to attack is that 75% to 80% of all people with autism are mentally retarded. Some professionals have reduced that number to 50% because so many of the young children now being diagnosed have Asperger’s Syndrome or High Functioning Autism. Seventy-five, eighty, or fifty – they are all wrong. Those of us who don’t speak, or speak echolalically, are counted as retarded. We also score in the retarded range of I.Q. tests, so it is reasonable that we are assumed to be retarded. What we have found through use of Facilitated Communication is that these low functioning people have at least normal intelligence with lots of movement problems masking their intellect.

I am a great example. Without facilitation I still test as a retarded person because I can’t manipulate objects to pass a non-verbal intelligence test. When allowed to type, which I can do independently, I can answer the same questions. For example, when asked to put similar cards together, I couldn’t do it. But when the cards were labeled A, B, C, D, etc., I was able to type which cards belonged together. Clearly I understood the task and could answer correctly, but not in the standard way.

For those of you who don’t know me, I am a Junior at Whittier College with an A- GPA and a member of the history honor society. I type independently with my staff, especially in class and when I meet with my professors. I use physical touch when I am doing a long paper and need speed. So, you have a college student scoring as a retarded person on standardized I.Q. tests, due to a movement disorder.

Movement difficulties are the bane of my life. When people see me, even from a distance, they immediately assume I am retarded because of the way I move. When they ask me to do something and I don’t immediately respond, they are convinced I am retarded. The really awful thing is that my brain wants to move and my body won’t. The movement problem is responsible for my lack of speech. I hear words properly in my mind, and can say them properly in my mind, but my mouth doesn’t work. Great ideas are always in my head, but great words don’t come out of my mouth.

Great ideas were not always in my head. In fact, for the first thirteen years of my life, no ideas were in my head. This may be an example of true retardation – not thinking. But after I began using Facilitated Communication, my mind got organized and I began to think. I believe a person’s autism can prevent him from thinking. I also believe a person can learn to think like I did. I am sadly an example of a person who must always exercise her mind or I will quite decidedly regress to a non-thinking person.

I would next like to take to task the myth that people with autism are lacking empathy. I can’t speak for Asperger’s Syndrome or high functioning autistic people because they are very different from us, but the people I know who are non-verbal and FC users like me, are very empathetic. In fact, we are definitely sucked up into other people’s emotions and experience them as if they were our own. The fact that my face doesn’t show the emotion I feel leads people to believe I m not experiencing the emotion.

The myth that we are impervious to pain is another area requiring explanation. Sometimes we really don’t feel pain – like the time I pulled out a handful of hair a few years ago. However, at other times I feel pain more acutely than normal people – like when I brush my teeth.

The last myth I would like to destroy is the one that would like to limit us to a life of boredom in a restricted environment. Many people think that because we need support to do just about everything, we don’t deserve to live a normal life with friends and freedom to make our own decisions. We do need help, but we love the same things you do. We want to live in our own house or apartment and do productive work or attend school, and be surrounded by peers who love and respect us as friends and intellectual equals who just need a little help.