“On November 1, 2007, the United Nations unanimously declared April 2nd to be designated as World Autism Awareness day to highlight the need to help improve the lives of children and adults who suffer from the disorder so they can lead full and meaningful lives.”
On November 1, 2007, we were battling autism in our home, not yet completely aware that it was autism. Our 2 year old son would bang his head on the floor repeatedly whenever he got upset. He lined up his toys. The list of foods he would eat grew shorter and shorter. Sam couldn’t effectively communicate in any way other than screaming, which wasn’t very effective. He was slowly gaining words as he had started therapy three months prior to this date. My worry and fear about what was wrong was growing stronger and my patience was growing thinner.
Samuel was diagnosed with autism on December 20th, 2007. It was both a beginning and an end for our family. It was the end of the “normal” life as we knew it. The end of the normal life we expected each of our children would have. It was the end of hopes and dreams I had for my son. But it was also the beginning of a new life. A life filled with new hopes and dreams. I started hoping he would be able to talk. That he would be able to tell me what he needed when he needed it. That he would be able to express what he wanted. I dreamed of the day he would be able to tell me he loved me because he felt it, not because he was just repeating what I told him to say.
One of the major points of autism awareness is that autism is lived out on a spectrum. It looks different for every child affected by it. You’ve probably heard this before, but as the saying goes, “if you’ve met one child with autism, you’ve met one child with autism.” When Sam was diagnosed, we didn’t know what autism would look like in his life at any given age. At the time, he was completely non-verbal with extreme behaviors. Six years later after diagnosis, he is verbal. He can talk to me and tell me what he wants and needs. (Most of the time.) He tells me that he loves me because he wants to, not because I told him to. His meal menu is growing longer. He can still have extreme behaviors when he has meltdowns. He hits his head with his hands when he’s very frustrated. He can’t just stop talking in the middle of what he’s saying if we tell him to stop talking and listen to us. He has to finish what he’s saying. He is passionate about one thing at a time, currently Frozen (you’ll see a picture below.) When he becomes obsessed with something, he learns everything he possibly can about it until there is no more left to learn or understand. He completely dissects his interests until there are no more questions to ask about it. And then he moves on. He thrives with routine, and struggles when things happen that are out of the norm, like snow days for weeks on end.
Some people think that people with autism can’t understand jokes or don’t like to laugh. Sam is funny. He’s slowly starting to enjoy doing things to make people laugh, whereas a year or more ago he would have a meltdown if we laughed at anything he did. He still struggles understanding why certain things are funny, and how to make a joke, but he keeps trying. He’s not laughing in this picture, but there were many giggles while playing with moustaches!
Some people with autism might have difficulty with gross motor skills. Sam enjoys riding his Huffy big green machine and “drifting.” He worked VERY hard to be able to ride.
Some people think that kids with autism can’t love or relate to animals. Sam loves his dog, Fred. There’s just something different about him when he’s with Fred.
Some people think that kids with autism always want to be alone. Sam loves his brothers and wants to do everything big brother Benjamin does. He jumps up and down and gets SO giddy, clapping his hands, when we get to visit with grandparents.
Some people with autism struggle with fine motor skills that are necessary for handwriting or drawing. Sam is a pretty darn good artist for his age. He drew this when he was 6 years old.
Some people think that people with autism don’t like to be touched, much less held close and hugged or kissed. Sam likes to cuddle with me when he’s upset or sick. He makes kissy noises at me when he wants a kiss, just like I used to do to tell him I wanted a kiss. I always gladly oblige. He plays with my hair as I lean over his bed tucking him in at night. This picture is of Sam with his Gran (my mom) several years ago.
Some people think that having autism means having a low IQ. A nonverbal IQ test given during an autism diagnostic test when he was 2 showed he was just a few points below what is considered “gifted.” Sam knew all of his letters and numbers when he was two years old. He may have known them sooner, but he had just turned 2 when he started naming letters he saw around the house out loud. He is keeping up with his classmates in his third grade class today. He is close to the expected reading level for his age, though he has difficulty with writing comprehension which is part of what determines a child’s official reading level. Overall, he is doing very well in school.
Some people think that people with autism always have some sort of physical stimming – like flapping hands or rocking back and forth. Sam has never really displayed these kinds of stereotypes. (I learned that word is pronounced “STARE-ee-AW-tipees”, not “STARE-ee-oh-TYPES.”) The only time I have ever seen him stim is when he is REALLY excited and he flaps his hands a little bit. He loves to spin, though we don’t see him spinning his body around and around often. He enjoys spinning in his therapy swing – just not too fast.
Some people think that people with autism always repeat everything they hear. There are two forms of this. One is called echolalia, which means the person repeats back what they hear out of context, not necessarily understanding what it means. The other form is called scripting. This is huge for Sam. Scripting is when a person repeats verbatim lines from TV or movies, reenacting it either in their head, or physically. Some people will use scripting as a form of true communication – they might use a line from a movie or TV show correctly in the context of a conversation. Much like my husband and I do when a situation reminds us of a line from Friends or Everybody Loves Raymond and we say the line, then laugh about it. But some people with autism might actually use the line in their actual conversation. Sam is starting to do this as well. His words are what he wants to say, and they are correct in their usage in context, but they are a scripted line. It might sound odd, but it is a completely acceptable form of communication, not to be made fun of or corrected.
Some people with autism have a lot of sensory issues. Some struggle with sound or the way clothes feel on their body. Sam does not like loud sounds, and it took several years for him to be able to watch a July 4th fireworks show without melting down. Whenever we are going to an event we know will be loud, like July 4th, or like when we went to Disney World, we take his noise cancelling headphones as an option for him to wear. Just this past year, he has started not wearing them. I don’t know what changed, but it’s progress that we’re very proud of! He still needs them occasionally, though it’s usually inside the house when his little brother is throwing a tantrum. Clothes in general don’t bother Sam. The biggest problem we have had is switching out seasonal clothes. One time he was crying, absolutely throwing a fit, over wearing shorts when it was just too warm outside for pants. We were at my parents’ house, aka Gran and Papa, and my mom said, “Sam, look at Papa! He’s wearing shorts! It’s okay to wear shorts because it’s hot outside.” He actually paused, looked up at my dad standing there, looked at his pasty white bare legs (sorry, Dad!) and then agreed to put them on. Now the biggest struggle is that I don’t think his body regulates temperature very well. He will think he’s hot, fighting me on wearing a coat, but it’s under 30 degrees outside. The picture of Sam in the snow is one of my favorites. He used to scream if he felt snow or rain on his face. He hated any part of his body being wet at all. To see him so enjoying the snow, with his hands thrown up in the air is pure bliss. Also, because of Sam’s extreme sensory issues, he cannot undergo simple dental procedures in the office. He has to be put under general anesthesia in the hospital. Brushing his teeth is a nightly anxiety-inducing event.
Some people with autism have incredible memories, even if they are unable to communicate what they remember. Sam’s memory absolutely fascinates me. When he was obsessed with flags, he read through a couple books on flags from every country and printed out all kinds of flag coloring pages online. He had an app on his iPad that tested flag knowledge, and the very first time he played with the quiz, he got the vast majority correct. And he’d only seen the country name and it’s flag design once or twice. He watched every Star Wars movie a couple times each, and then played with a trivia book from a friend at church that asked insane trivia questions about the entire series. He got them all correct. We saw Frozen when it first came out at Thanksgiving in November. We bought the soundtrack for him in January as we waited for the DVD release in March. The CD came, and it included 59 tracks. Every song that was sung and every orchestral piece played during the movie was on the soundtrack. The very first time he listened to the soundtrack, he was able to tell me what was happening at any given point during the orchestral music. I didn’t even remember what the music sounded like at all, much less what was happening when that piece was playing, much less what was happening during a specific two measures of the music! He’d only seen the movie ONCE. Two months before hearing the soundtrack. THAT’S a good memory.
Some people think people with autism don’t have any friends. Sam’s best friend is a sweet girl in his class, named Samantha. They’re the cutest couple I know. (Though self-admittedly NOT boyfriend and girlfriend.) He has other friends as well, both boys and girls.
Every November, our family participates in the Washington, D.C. Walk Now for Autism Speaks event. We always invite family and friends to join us as we all walk together with hundreds of other families who are living with autism and it warms our hearts when people take time out of their day to come all the way to D.C. to spend the morning with us. We are so thankful for the love and support that our family and friends give us in so many ways. Whether walking, listening, babysitting, or praying for us, God has blessed our family as we raise Samuel.
The CDC’s new statistics say that 1 in 68 children are diagnosed with autism each year. That number isn’t supposed to incite fear. It’s just a statistic. What it does mean, however, is that autism is growing closer and closer to home for all of us. It’s nothing to fear. It’s something to understand. It’s about a person who needs love and compassion just like anyone else. It means being aware of how autism affects the people you know, and that it might look differently than you originally thought. It means doing what you can to help those that are affected by autism and their families. It means fighting with them or in their stead for better services so that ALL families have equal access to autism treatment. It means that if you don’t know anyone with autism now, you probably will soon. How will you respond to them? To their parents or family? How will you love and care for these families?
The “1” in that statistic is not just a number to the family of that “1.” My “1” is named Samuel. Living with autism is hard. HARD. But we’re not without hope. Not just because Sam can talk or do things other kids who also have autism can’t do. Our hope in autism is not based on the level of his functioning. Of course we want the best for him, but we have no guarantees of what autism is going to look like for Sam in 5, 10, or 25 years. We will continue to help Sam as best we can. We will continue to love him no matter what. And despite all the challenges Sam faces with autism, we will continue to find the beauty in our son whom God created with His sovereign hands of grace.