Thursday, August 7, 2014

Autism: what it is and what it isn't

James (our 4.5 year old) was diagnosed with autism 10 months ago. His younger brother, Liam, (3 years old) was diagnosed 5 months ago. During that time I cannot tell you how many times I have heard people tell me how "normal" they seem. While I understand that most people have pure motives for sharing that observation with me, hearing that my kids seem "normal" so frequently has done two things to me: 1) it puts me in the position of feeling like I am constantly "defending" their diagnoses and 2) it has made me realize that the average person has no idea what "autism" actually means.

To qualify for an autism spectrum disorder diagnosis, a person has to present functional impairments (meaning that the impairments interfere with routine, age-appropriate expectations) in three areas. Those areas include Reciprocal Social Interaction, Communication Skills, and Restricted and Repetitive Behaviors.

Reciprocal Social Interaction evaluates things like eye contact, emotional expression, sharing toys, and joint attention (when you observe something together, e.g. when a child shows you a toy or a book because they are excited about it). Because autism is a spectrum disorder, a child does not have to have severe impairments in each area observed for the "Social Interaction" category. One child may display appropriate eye contact but may not be able to express his emotions appropriately. Or the impairments may vary in severity. Liam will engage in eye contact when he is excited about the activity but he will refuse to engage at all when he has lost interest in an adult-directed activity. Both Liam and James will engage in parallel play and some interactive play but for the most part only if that interactive play is physical in nature, like chasing each other through the house.

Communication Skills evaluates appropriate verbal communication. This category is surprisingly tricky to people who are not familiar with autism. What most people don't know to look for is the difference is "spontaneous speech" and "scripted speech". "Scripted speech" is often referred to as "echolalia." Liam's communication delay is fairly obvious; his speech is at an 18-month level and he often remains silent when people greet him or ask him how he is doing. James's delay is much less obvious; when he was first diagnosed it was common for him to repeat the last few words of a question. Many people (myself included) assumed that he was answering them. Teacher to James, "Would you like to play with the trains or the blocks?" James's response, "The blocks." Sometimes his responses might actually line up with his preferences, but sometimes they don't. And other times the disconnect was more obvious, me to James: "James, who is that?" James: "Is that."  James and Liam also show a great capacity to memorize lines from television shows and frequently used expressions. James is able to insert those phrases into conversation in ways that make it seem that he genuinely understands what he is saying. It takes a close ear and a keen mind to discern that he is often not aware of what he is saying. It's more like his brain has files of social situations and when he needs to take a mental "short cut" he just looks for a file related to his current social situation and inserts that comment. [We were once at a restaurant after a long week of travel during which James spent a whole lot of time playing with kids his age--read, he was wiped out socially. While we were waiting on our food to arrive, James got up from his chair and started to walk away from the table. When I asked him what he was doing, his response was practically monotone, "I'm just going to slip into the kitchen and have a word with the chef." He was quoting "The Emperor's New Groove" which we had watched frequently that month.]

Restricted and Repetitive Behaviors refers to a person's need for things to be a certain way. This can affect their style of play, their need for a rigid daily schedule, their ability to be flexible during transition, specific and/or obscure interests, and many other things. For Liam this category is fairly mild. He has preferred ways of playing with toys but can be redirected with mild to moderate frustration. If we allow him to play without direct adult interaction his play can become very focused and very repetitive. For James this category is a little more noticeable but only if his caregiver has the eyes and ears for it. James becomes distressed when his peers play with toys the "wrong way", e.g. putting trains on a road or cars on a train track. On the surface, this looks to many people like he is having trouble sharing, when he is actually in distress because things aren't the way his mind asserts they "should be." We have to be careful how we word things when we speak to him or we will give him an incorrect expectation of his day. Sometimes he is easy to redirect and sometimes we have melt-down city. Every day is a new adventure

Obviously, this is a brief overview, I'm not an expert and my kids are only two kids. They are not THE picture of autism. But what I hope to impress upon you is that these are three rather broad categories that can present very differently in various people. A person can be accurately diagnosed with autism and be very, very intelligent. Their restricted and repetitive behaviors can give them a focus to learn, frequently about a specialized or favorite topic. For other people, the impairments related to communication skills are so severe that they are unable to grasp any verbal communication--they cannot understand what people say to them or produce speech in response. When the communication impairment is that severe, a person with autism may not develop past an internal age of 12-18 months.

Many people have asked me whether my kids might "grow out of" their autism. The simple answer is "no." If they have been accurately diagnosed, they will never grow out of autism. Autism means that their brains interpret the world differently than "typical" people and that will never change. Many people with autism are able to learn skills and strategies for navigating the world around them, in what I think may be a similar way to the ways that people can learn and become fluent in a second language. There may come a time when you are able to "think" in that other language as if it were your first but it takes a lot of work and a lot of practice.

Sometimes I feel like our (my family's) whole world revolves around autism and I can't help but wonder if I talk about it too much. I never want to over-focus on how hard it is and lose sight of how wonderful my kids are but I also don't want to shy away from being honest about the difficulties that we face as we do our best to raise our kids. Mostly, I feel like the more information I can share about what autism actually means the closer we will be to autism acceptance.

Maybe my kids will play with your kids and you will be able to coach your kids through how to respond to James when he gets a little intense and says to your child, "Excuse me Sarah, excuse me Sarah, excuse me Sarah, excuse me Sarah." Or maybe our family will visit your family and you'll be able to anticipate the reality that my kids don't understand verbal instructions the way their peers of the same ages do... meaning they might break anything that is breakable and within reach so you'll move anything of value out of their reach, not because they are "bad kids" but so that we can relax a little and focus on having legitimate conversation. Maybe, just maybe, sharing this kind of information with other parents will help pave the way for our children's generation to operate out of understanding and acceptance rather than fear and skepticism and that one day my children will form deep friendships with some of your children.

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