Today is World Autism Awareness Day. As many of you are aware, my older son, Jesse, has Asperger’s Syndrome, which falls within the autism spectrum of disorders. According to the Autism Speaks website,
• Autism now affects 1 in 88 children and 1 in 54 boys
• Autism prevalence figures are growing
• Autism is the fastest-growing serious developmental disability in the U.S.
• Autism costs a family $60,000 a year on average
• Autism receives less than 5% of the research funding of many less prevalent childhood diseases
• Boys are nearly five times more likely than girls to have autism
• There is no medical detection or cure for autism
In honor of all those unique individuals and their families who deal with autism on a daily basis, today I am going to write about how autism/Asperger’s has affected my family.
Intellectually, Jesse was always a precocious child. I know people always say that about their kids, especially their first-born, but in our case, it was a fact. Jesse spoke early and developed a vocabulary that would regularly astonish people, myself included. Ken and I were amazed at the grasp he had on the English language at such an early age. Jesse has been able to follow and hold complex conversations since he was about 2 years old. He did, though, have a habit of making what I call “hard left-turns” conversationally. He would be talking about one thing and all of a sudden, sometimes, in mid-sentence, he would switch to something entirely different, and keep on talking, like he had never switched gears. And to Jesse, the two completely differing subjects were absolutely connected.
Physically, Ken and I noticed some oddities in Jesse’s development. He was rather clumsy. His feet turned in, but we didn’t think anything about it, because I had been pigeon-toed as a child and Ken had worn leg braces when he was little. While Jesse loved pushing himself along on riding toys, we were never able to teach him how to pedal a tricycle. While Jesse never missed any of his developmental milestones, the physical ones always took longer than the intellectual ones.
Jesse also had some strange reactions to sensory stimuli. When he was between 2 and 3, he went through a phase where anytime he wore shoes with socks, he would scream, “Mommy, there’s a bump in my sock!” And he would not hush until I jerked his shoe off his foot and smooth out any “bumps” he perceived were there. I bought every different kind of socks I could find to try and eliminate the problem, but Jesse still complained of “bumpy” socks. After that phase, for a long time, he refused to wear his pants up around his waist. He was “busting a sag” and displaying “plumber’s crack” long before either became the punch lines of jokes. No amount of cajoling, threatening or talking about it would cause Jesse to hitch up his pants. He said, “but Mama, it bothers my belly”.
Food was an issue as well. For several years, Jesse would only eat a very limited number of things: cheeseburgers with only ketchup, macaroni and cheese, french fries with ketchup, and cheese pizza. And though he has been able to expand on his list of preferred foods through the years, those remain his favorites. People would tell me “Let him go without. When he gets hungry enough, he will eat what you put on his plate.” Well, they didn’t know Jesse. He would rather go hungry than eat something that was not on his list. And it wasn’t just the food itself, it was how it looked, smelled and felt in his mouth. He always smelled everything before he would put it in his mouth. If it didn’t smell right, even though it was something he had loved yesterday, he would NOT eat it. And if he did put something in his mouth and it didn’t taste right or didn’t feel right in his mouth, he would spit it out and refuse to take another bite. It was frustrating, to say the least.
And then there were loud noises and bright lights. These stimuli not only bothered Jesse, but could absolutely send him into a full-on meltdown. We learned early on that there were just some places that we shouldn’t take Jesse. I remember once, we went to the aquarium in Chattanooga. To me, the atmosphere there was very calming… like watching a smaller fish tank, but it was all around us. To Jesse, it was like being trapped underwater and not being able to breathe. Ken had to take him out and wait in the lobby with him. He was still breathing hard when we went to lunch. Jesse couldn’t go to concerts because he said he could “feel the vibrations of the music in his chest”. When he was six, he told me he didn’t want to go to Disney World. I ignored him, thinking that all kids LOVE Disney World, right? WRONG! I should have listened to Jesse and left him with Mama and Daddy. Because Jesse was hit with sensory overload, that trip was one loooooooong whine. We couldn’t enjoy anything without Jesse going into meltdown mode.
Then, once Jesse started school, difficulties with peers became a huge problem. Because Jesse had so many peculiarities, teachers and students alike viewed him as “odd” and “weird”. It made the other kids avoid Jesse, and later, it led to them making fun of him, which eventually led to them bullying him. He just didn’t seem to “get” the whole group dynamic. Jesse would regularly come home from school upset and crying. Conferences with teachers usually all ended with the teacher telling us that he was “spoiled” and he “needed more boundaries”… basically telling us that the root of Jesse’s difficulty was certainly our fault. It was so frustrating to see my child shunned by his peers and misunderstood by the adults around him. Ken and I knew there was something different about Jesse, but we didn’t know it had a name.
Then, after many years of frustration and sadness at Jesse’s inability to “fit in”, his fifth-grade teacher said to me one day, “You know, I have been watching Jesse and I think he might have Asperger’s Syndrome”. At that time, I had never even heard of it, so I asked her to explain. She told me that it was on the autism spectrum. I sat there speechless, trying to wrap my head around the word “autism”. I knew what that was… she was saying my child had a pervasive developmental disability. I began shaking my head because I couldn’t bear the thought. My child? Disabled? Surely not! She then quietly gave me an article listing characteristics of people with Asperger’s. As I sat in her classroom reading, I began to sob. The article was describing Jesse perfectly – as if it had been written with him in mind. In that moment, I was filled with both horror and relief. Horror that my precious child could be what the world viewed as disabled, but relief because there was something wrong other than what everyone had been telling me for years, that Jesse was just spoiled. There was something causing his difficulties and it had a name!!
It took another year to get an official diagnosis for Jesse, and it took even longer than that to get the school system to offer him the services to which he was entitled. Because Jesse was so high-functioning, it just always felt like we were fighting to get people to acknowledge that he needed accommodations for his disability. It was so bad after we moved to AL, I finally ended up taking him out of public school and home schooling him. I mean, what else can a parent do when the teacher who was supposed to be the biggest advocate for kids with special needs looks you square in the face and says, “We don’t think there is really anything wrong with your child, other than that he’s spoiled. The only reason we’re serving him at all is because he came from another state with a doctor’s diagnosis!” (No, I’m not exaggerating… she really said that to me.) So, you see, having an autism diagnosis doesn’t always ensure that your child will receive the services that the law clearly states he or she should get.
Jesse, as a young adult, continues to struggle with Asperger’s. He understands the disorder very well and he understands that he perceives things differently than most people. What he doesn’t understand is why it makes such a difference to other people. He hates, as do I, that instead of trying to understand him, many people just write him off as “weird” and either ignore him or make fun of his peculiarities. His frustration at being excluded has now moved into depression and self-imposed isolation. It breaks my heart that life is so hard for him, but no amount of encouragement from his Mama changes the fact that his perception of the treatment he gets from the world in general is negative and hurtful.
And then there’s the guilt. I carry a tremendous burden of guilt at the fact that my much-loved son struggles with a disorder that I can never fully understand. I remember when I first heard of autism, blame for the disorder was firmly laid at the feet of the mother… she didn’t love her child in utero and somehow, the child sensed it. We’ve come a long way, and that horrible, hurtful myth has been totally debunked, but most of today’s research points to the fact that autism is caused by genetics. So I torture myself wondering what Ken and/or I did that caused Jesse to have Asperger’s Syndrome. I also carry the guilt of how Jesse’s disorder has affected his brother’s life. How many times have I had to push Benjamin aside because I was busy concentrating on getting Jesse through another meltdown? How many times has Benjamin had to deal with people making fun of his brother? How many times must it have seemed to Benjamin that I was giving in to Jesse because of his disorder? You see, autism doesn’t just affect the one with the diagnosis. It affects the entire family.
So, the next time you see a child throwing a tantrum in a store, or a parent trying to calm down a child in public, please realize that there may be more going on there than meets the eye. When you come across someone you feel is “odd” or who doesn’t see things the same way you do, don’t judge too harshly. You may be in the presence of someone who is autistic. Don’t turn away from them. If you do, you will be depriving yourself of some of the most intelligent, logical, interesting and honest people in the world. You act the way you do because of the way you perceive the world. SO DO THEY. Don’t punish them because their perception is different from yours.
