Having a son with autism has shaped my perception of human behavior and also convinced me that we have a miraculous brain. Watching how Sam has processed information throughout his thirty years with autism has been quite an education for me personally. Sam has always been a very happy, fun loving guy, by nature. The fact that he has a significantly impaired Theory of Mind has caused him great difficulty but has also probably heightened the frequent exuberance I have seen him display over some of the most ordinary happenings – like taking a car ride or listening to the Beach Boys (over and over and over again). These different events mean so much to him because it is all about something he enjoys and there is no expectation on his part that he needs to do anything but take it in. I know Sam loves me and he likes to be around people. He just has no idea why he should interact beyond trying to get a need met.
According to the NCBI (National Center for Biotechnology Information), Theory of Mind (also referred to as ToM) “refers to the ability to understand and predict the behavior of other people, their knowledge, intentions, emotions and beliefs”.
A person on the autism spectrum will have some level of difficulty with ToM. How much this difficulty personally bothers the individual with autism may depend on the degree of cognitive deficits they experience or the level of severity of autism they may have. Or at least that seems to be the case with my son. As a child, Sam didn’t have any fear or inhibitions. He would gleefully run into the street or into the neighbor’s house. His sister once made the comment, “Sam is like Curious George!” Sam did seem amused by our reactions to him, but not from the point of view that he thought we had feelings or concerns. He just liked seeing how we responded to his antics! He enjoyed watching me chase him in the same manner he enjoyed seeing a balloon pop when he threw it into the ceiling fan. I sometimes think he saw me like a robot, here to help him, feed him, and entertain him. My attempts to keep him safe and clean, or to teach him important life skills, such as communication, toileting and dressing where often a source of frustration to him because he just didn’t see the importance of these things.
Another interesting aspect of Sam’s mind, is what I call magical thinking. As a child, he would often think I could do things that were impossible. For instance, he would see a toy in a magazine he liked and he would put my hand on it and say “Get it out!”. He would truly be angered when I said I couldn’t, that it is a picture. Sam figured I was able to do so many things that seemed miraculous, like having food on the table, or warm water for a bath, or driving a car, that surely I could do this as well.
As Sam became a pre-teen, I started to see an emerging understanding of consequences related to his actions. A belief that he could cause himself a lot of frustration and confusion by not complying with certain expectations. It was a sad time, because with it came a sense of fear and some aggressive behaviors, since he understood that others might take aversive actions towards him if they were not happy with him. On the other hand, it was good to see him become more careful in some of his actions. For example, he quit running into the street to have someone chase him because he seemed to be aware that running away could be dangerous. He started to wait for me, to be sure I was in sight. He still saw me as his protector, as someone who is always for him.
Sam still has a significant impairment in theory of mind. Additionally, his language ability both receptive and expressive, are still more typical for a four year old. But he does understand now that others have feelings and thoughts that may be different from his own, at least to some degree. He would have great difficulty reading feelings in some situations, but he watches carefully do help him determine what action will be the best for him in a given situation. He wants people to be happy with him.
I remember years ago hearing an analogy about autism that I still think is one of the best. Imagine that you wake up and you are in a foreign country, very different from your own. I always imagine Bombay. You don’t know the language, the cultural expectations or where to get your next meal. If you are a whimsical monkey like Curious George, this may not bother you in the least, you will dash through a window and grab a banana. If you are a person, you might find yourself watching others very closely, trying to find a friendly person who might care to help you. You probably experience some anxiety! This is how I see Sam right now – Always trying to figure out what he should do by watching others actions. He really doesn’t have a grasp of what is expected in a new situation and he can’t figure out what others in the environment might be thinking or feeling unless their expressions and tone of voice are overly exaggerated.
He has matured to the point that he knows he is different and very dependent on the good graces of others. He is still a happy, fun loving person, but he feels most secure in his predictable routine, with people he knows care about him. On the other hand, he has become more trusting again, assuming that people will be kind to him. He still knows I am there for him.
My greatest hope and prayer is that others will care about the many Sam’s in the world. Someday I won’t be here. Who will take my place as Sam’s greatest fan and advocate, as the one who makes sure he gets into the community and has meaningful activities?
As a parent and therapist, I try to always talk about my feelings or what I am thinking, when with individuals with autism spectrum disorders. I think of ways to help them see that we have different thoughts and that what we do impacts others and ultimately impacts ourselves.
If you have a child on the spectrum, with all of the many things you must juggle, try to fit in a little time to think about this basic mental difference. It isn’t something that is always targeted, with so many other challenges to address. But it is a foundational difference that impacts so many things for our children, such as their motivation and ultimately their opportunities and quality in life.