Diagnosis day was March 9th 2009 (almost two years ago from today), and my son Connor had just turned two. A developmental pediatrician told us that "this likely is not a surprise to you, Connor has Autism." I suppose she was right; it was not a surprise, but it did feel shocking. I suppose after months of scrutinizing over his every eye gaze, gesture, vocalization, and behavior, and balancing the opinions of everyone we knew, we didn't expect a concrete answer. I suppose we expected it to be more of a "gray" answer. We had heard conflicting opinions from friends and family; some telling us what they thought we wanted to hear, "he's fine, just a late talker," or those closest to us with worried questions, "could he be deaf?" The doctor's conclusion came quite quickly and quite concretely, and this was surprising, but not the diagnosis itself. There was no flood of tears, but actually a deep breath, at least for me. I felt some strange sense of relief. I no longer had to study him the way I had. With this diagnosis came a sense of empowerment. Now, I had a name, I had something to learn more about, somewhere to begin. Little did I really know, that the entire world I had entered was one that was truly gray; nothing about autism was black and white, and the journey we have been on since 2009 has remained one of uncertainty.
In this first piece, I would like to prevent some of you the same anguish I felt analyzing my son, or at least provide you the framework for what to analyze. Introducing the red flags for autism is very important, because the one concrete thing that doctors and scientists agree on is that the best outcome for children with Autism is early intervention. Experts are now able to identify children earlier than ever before. Physicians should administer the M-CHAT to young children during their well visit at some point between eighteen and twenty-four months. The M-CHAT is a list of simple questions about your child. The answers determine whether he or she should be referred to a specialist, usually a Developmental Pediatrician, a Neurologist, a Psychiatrist or a Psychologist, for further evaluation. I did complete the M-CHAT myself before it was being offered in doctor's offices, and it did screen Connor appropriately for further evaluation. He began early intervention services at twenty months, and was diagnosed five months later, mainly because it took that long to get off a waiting list with a specialist. Fortunately, for us, having another son, Cameron, only two years earlier allowed us the hindsight to see the signs.
Unlike Connor, Cameron used a great deal of non-verbal communication long before he spoke a word. As first time parents, we actually had him evaluated as well, because he too was a late talker. However, the evaluation went very quickly, and he was a classic late bloomer. Connor, however, lacked coordination of nonverbal communication. Before Cameron was a year old he would extend his arms when he wanted to be picked up; he would wave to strangers in the grocery store; he would point to his cup before he had the words to ask for it; he would shake his head defiantly when he did not want to do something. Long before he had language, he was able to communicate with us through gestures. Connor lacked all of these skills, and today, at four, he still rarely uses many gestures and has to be prompted for those that he does use.
What stood out most, what instinctually felt the most wrong, was Connor not answering to his own name and having little to no eye contact. I remember my husband getting home from work, walking in the door, and Cameron's feet barreling down the stairs just hearing the front door slam shut. Cameron's joy was evident in his face, the shrill in his voice, and the affection that he showed his father. I remember my husband getting home from work and Connor staying glued to where he was, playing with his Pixar Cars or Thomas the trains or watching a show on the television. As I prepared dinner in the kitchen I could hear Keith say, "hi, Connor," louder, "HI, CONNOR," and then I'd walk in and Keith would be standing in front of him at his level, "Hi, Connor," and Connor still showed little to no emotion. I recall my parents visiting and trying to get his attention while he was watching something on TV; they clapped their hands, shouted, and acted silly, none of which caused him to respond; they suggested having his hearing tested. Not only did he often ignore people calling his name, but even when he wanted your attention because he had a request, like his cup of lemonade, he would look to the cup, not to the person to ask for it. His eye contact was minimal, even with his immediate family. His eye contact did gradually improve, especially when we would hold the objects of his desire beside our eyes. For the most part, though, Connor only communicated with us during physical play or when he needed something from us, and even then he dragged us to what he wanted, rather than pointing or telling.
Furthermore, children with Autism rarely share enjoyment or interest with others. This fall my fifteen month old niece was here visiting. I was very keenly observing all the things that she was able to do. While sitting on my front stoop, she toddled over and looked to my flower pot of mums, and she then looked to me, almost looking for my approval if she could touch one. I nodded and said, "go ahead, you can have a pretty flower." She bent down and smelled it, picked a pedal, and then brought it over to me with a huge grin, beaming with pride. A child with autism lacks the joint attention that typical children share with others; they do not alternate gaze between objects of interest and an adult face, or coordinate appropriate emotional responses in response to an emotional display by an adult. A great deal of research has been conducted in the area of joint attention, and it truly is a defining feature and core deficit of those affected, and two years later it continues to be one of Connor's greatest challenges.
Many say that children with Autism prefer to play alone. I hesitate to use the word "prefer," because I think it is truly not always a matter of preference. If Cameron and his father are wrestling, Connor has always wanted to get involved and definitely thrives on physical play. His eye contact, attention, and joy are all the strongest in this type of engagement. Therefore, I think it is not being with others that he doesn't prefer, but rather the type of engagement. Physical play requires little to no language, but is social by nature. Many children with autism do play alone or play with a lack of variety of toys; however, like physical play this has to do with the difficulty of the task. Imaginative play with a variety of toys requires a level of communicative skill that is lacking with many with autism. Therefore, it is predictable and safe to play alone with the same toys in a routine method.
Many children with autism actually are repetitive with objects or their bodies. Not only do they like to line up cars or trains or stack blocks, but they may become preoccupied with the movement of a toy rather than using it appropriately. For example, many young children like to play bubbles. If I opened a container of bubbles and began blowing them, most children would be drawn to the bubbles. I then seal the container and place it on the table. A typical child would likely grab the container and try to open it, or somehow try to communicate a request for help for someone else to open it for them, whether verbally or nonverbally. A child with autism might actually become preoccupied with the object itself. Rather than trying to open the container he or she may simply roll it back and forth. Other children may actually become preoccupied with their own body motions, like flapping their wrists or spinning in circles.
There are other red flags and signs that can be found, but these are some of the most common and highly referenced "symptoms." The defining moment when I knew, without a doubt, that Connor had autism was at a lecture with Dr. Rebecca Landa at a Jewish Community Hall in York County. She was conducting a lecture on the early signs of autism. She showed video clips comparing typical children and children with autism at different developmental stages, highlighting the red flags that were obvious to the trained eye conducting the study. In every clip I saw Connor clearly more similar to those affected with autism than those that were typical. The following day he had his evaluation at Kennedy Krieger; the following day my questions were answered. Those clips and the red flags can be found by visiting the Autism Speaks website (www.autismspeaks.org). You will need to create a login to access the video library, but it is free, and it is incredibly revealing for those who are wondering could my child be autistic? Is there something going on with this student in my classroom? How should I approach my friend, because I'm worried? I wish everyone could see these clips, because I know if more children were identified sooner, more children would begin services sooner. I will continue to share resources and our ongoing journey with Connor, and I hope in sharing what I have learned that others can also find some sense of relief in a world that very little is black and white.
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. Her younger son Connor was diagnosed with autism.
Kathy & Connor are featured in this SmartTalk video. Although the latter part of this video discusses vaccines, the focus of Kathy's articles will be on what to do in the moment with treatment & care of your child.
The Tyson Family - Kathy & Connor (on right)
