As David’s mother watches her two-year old sleep, she often fears that “that tomorrow could be the day that autism will take more away of him and less will be there when he wakes.” For this mother, autism “is taking away some of his abilities to be free. I want to help him to hold on to who he is.” As a father of three boys on the autism spectrum, I’ve struggled with these same fears. Perhaps you can relate?
Is There Anybody In There?
I’ve worked in the field of autism now for over 11-years. Amazingly enough I still run into folks whose common misconception about autism is that there is “no person inside.” There is a belief that there is just a body. A body that simply does repetitive automatic stuff, but nobody inside the body that thinks and feels. Personally I feel that this misconception stems from communication challenges in autism. Children with autism, especially those on the severe end of the spectrum like my son Joshua, do not always give the verbal and non-verbal responses that neurotypical people give to indicate that they think and feel.
Some People Assume That Children On Spectrum Aren’t Aware
Since many children on the autism spectrum do not give these types of introspective responses, some people assume that they don’t think, feel, and are unaware of what goes on around them. I know that some well meaning friends and even family members have asked me whether my son Joshua “is aware.” My mother-in-law onced asked, “Does he even know that I’m here?” Since many of those same people do not take the time to get to know Joshua, they do not discover that he IS a young boy who thinks, feels, and is aware.
A young teenager with autism blogged:
“I have seen people regard me in this way. People assume that they can say anything right in front of me–false, insulting, and prejudicial things–and I won’t know what they are saying. People act like I cannot hear them when they are only three feet away. The truth is I can hear them and I do know what they are saying about me. I know when they claim that I am retarded or that I have no perception on reality. I believe the reason why people assume I am “super high functioning” is because on my website I have demonstrated that I am self-aware and aware of my abilities
and the way I think and perceive the world. The truth is consciousness and self-awareness does not mean non-autistic, and the truth is that I have poor social skills, unpleasant obsessive thoughts, difficulty communicating, and high amounts of stress. One thing I am not though, is an automaton.”
The “Inner” Person Is Always There!
Yesterday, I finished reading an article titled: The Enduring Self. The enduring self refers to “the ongoing or lifelong person within” and is a term that’s most commonly found in the literature on Alzheimer’s. Furthermore, a foundational belief of the concept of the enduring self is that “the inner person or self is always there even though some of his or her functions may be compromised by their diagnosis.” In other words, even though some skills are lost, the enduring self of the person is always present!
A Person’s Unique Self Persists Throughout The Course Of Their Diagnosis
Despite the frequent characterization of Alzheimer’s disease as a loss of “self,” (sounds familiar doesn’t it!) this enlightening concept and the research by Dr. Sam Fazio demonstrates unequivocally that a person’s unique self persists throughout the course of their diagnosis. Based on the research of Dr. Fazio, the concept of the enduring self was, and is, a part of a growing movement in dementia care. It is a movement away from the medical model and towards person-centered care or relationship-focused care. The bottom line, now, is a belief that person’s with Alzheimer’s need to be treated with dignity and respect at all times because there IS a person within.
Our Children Are Not “Less Than”
I adamantly believe that the same belief applies to children on the autism spectrum! Too many people still have the perception that a lack of “consciousness” is the very definition of what autism is. However, parents of children on the autism spectrum that is not true. My boys, your child, may have poor social skills. They may not communicate very well. They may have what others would consider to be odd behaviors. But from the highest functioning child to the lowest functioning child, there is indeed a person inside!