In the last article I explored communication as one of the three core deficits in children with autism. Social interaction and repetitive behaviors are the other areas outlined as criteria that separates people with autism from their typical peers. It is important to reiterate autism is a spectrum disorder, and the extent of these differences are varied and wide.
A friend of mine has a son with PDD-NOS; some would consider this a milder form of autism. His parents had not told him of any diagnosis , but when he was eight he asked his mother if he had autism, because he was able to identify some of his differences and similarities in relation to my four year old son with autism. His mother explained it to him in relation to water. She told him that his toes were dipped into the pool of autism, but some children were up to their knees, others, like Connor, just had their head above water (though I'd say he's probably up to his waist now), and others felt like they were drowning in their autism. This analogy helped him to identify some of the similar struggles he shared with others, but also let him know that there are definite differences between him and Connor, even if they both have the label of an autism spectrum disorder. This is not to say that all children with PDD-NOS only have their toes dipped in the water. For example, although someone with this diagnosis may have average language and cognitive abilities, their rigid routines and difficulties in social situations may make every day feel like they are just staying afloat. It is important in these teachable moments to recognize that the label, like any label, is not a definition. In fact, it is actually politically incorrect to say autistic child rather than a child with autism, because by changing the placement of the word "autism" you change the emphasis of its meaning in the utterance. Frequently, these children are only seen as their developmental disorder, but like all of us, they are too complex to be defined by any one term.
In discussing the significance of the social differences for those with autism, it is important to first consider the complexities in all of our relationships, whether with a spouse, other family members, or friends. It takes a great deal of work to maintain them; it takes constant flexibility and adjustments of expectations. You constantly must place yourself in the shoes of the person you interact with in order to keep the peace between you, and when you do not, things quickly become undone. For example, on Mother's Day I'd expect that my husband would consider how he might schedule his own day because on that particular day, the world, or at least our world, should be about me. I would hope that he would consider my needs and desires ahead of his own on that one day; fair or not, Hallmark has engraved this in my mind, and I now hold him to the Hallmark standard. He, fortunately, after fifteen years understands me, perhaps even the vast majority of women, and he knows that on that day, sleeping in, some alone time, and a card are a given, and anything else is a big bonus. He has learned the social rules of being a husband, particularly mine, and he has truly not disappointed me, but I would imagine that someone with autism would not naturally understand the implications of this day or the expectations of this day without being explicitly taught. One of the features of the social struggles for those living with autism is that they have a more difficult time putting themselves in someone else's shoes. Clearly, making friends and maintaining them takes an incredible amount of empathy, something that is described as lacking in those living with autism.
Like Mother's Day or any other Hallmark holiday, there are countless situations that we are able to manage despite the fact that no one ever explained the "rules." Other rules were explained, but you, unlike someone with autism, were able to generalize those rules in different settings with different people: "respect your elders," "use your inside voice," "manners, please." You sensor what you say, considering your audience and their feelings. Specifically, you do not discuss weight, body odor, age, possible pregnancies, or bad breath unless you plan on making someone feel small and uncomfortable. You understand the rules of proximity; people often have a comfort bubble that surrounds them and there is a tactful approach to invading it, specifically if you are a stranger, dating, or dear friends. You know when someone asks you a question it is polite to answer, and ultimately to return with a question or comment of your own so that the person feels heard and valued; otherwise, you will offend them and ultimately close off the circle of communication that was initially started. Furthermore, you know that throughout that conversation people expect some level of eye contact or affirmation that they are being heard. Making friends and even having a conversation can be challenging if you have autism, not only because of the communication barriers, but also because the social differences that define the disorder.
Isolating people with autism even further, particularly socially, often happens as a result of what appears to be a rigidity to particular routines and behaviors. Whether it is unusual motor movements, like rocking, or limiting play to watching the wheels on the trains move on the track, or a fascination with something like flicking the lights on and off, what the general public does not understand is that these behaviors are often a means of coping or regulating. The repetition can be a means to create safety in sameness in a world that is clearly by all other definition otherwise unpredictable and stressful. There are different approaches to managing these behaviors or understanding the functions of these behaviors , but first it is important to understand them as a feature of autism. Just because a child likes to line up his or her cars or walks on his toes he is not going to walk out of any office with an ASD diagnosis. The repetitive behaviors like the social and communication barriers are measured by a team of professionals and evaluated carefully. The impact that these behaviors have on the quality of the person's life is the key concern in planning for therapy. However, the hope is that an article like this will open the eyes to those who simply misjudge someone who looks at their shoes instead of your face, while they flap their arms, and perhaps asks you if you brushed your teeth this morning.
Kathy Tyson has an M.Ed. and is currently working on her Autism Certificate and BCBA coursework at Penn State. She is vice president of Autism York. More important than those credentials is her on the job experience as a mom to her two sons. Read more here about Kathy's journey with her younger son Connor, who was diagnosed with autism.
The Tyson Family - Kathy & Connor (on right)
