Autism is a range of conditions characterized by challenges with social skills, repetitive behaviors, speech and nonverbal communication, unique strengths and differences. Every person with Autism is different than any other person with Autism. Some people may have certain challenges or behaviors that someone else does not have. Some are nonverbal and do not speak. Some are extremely gifted (like Rain Man).
Some appear “normal” but struggle internally, socially, mentally. These people are referred to as “High Functioning Autistics”. My son, Trey, falls under this category, which is part of the reason that it took us ten years realize that he needed help. Yes, that’s right. We didn’t know that our son was autistic until he was ten years old. Looking back, there were more than enough signs from the age of one to two that could have, should have made us wonder if his quirks/behaviors were “normal”. But, he was functioning, and his behaviors were not so disruptive or abnormal that we were concerned. Trey is my middle child, so with most of his behaviors I thought “every child is different. He is not like his brother”. And, there are ten years between the two, so my memory was not as fresh on how fast a child should be progressing at certain stages.
It took me longer to wean him from the bottle. He was four, almost five before he was fully potty trained, and had a pacifier until age three or four. And not just one. He had multiple pacifiers at all times–one in his mouth, one in his hand, and one in his pocket. He has always had someone lay down with him until he goes to sleep, even now at eleven years old. He woke up multiple times every night. He never wanted to sleep. Naps were very rare. He walked on his toes and still does sometimes when he is excited or anxious. He cried every single time I vacuumed the floor and hated fireworks. He did not like change at all: changing babysitters, changing Sunday school teachers at church (he was in the classes at least one or two years past what he should have been). His first year of preschool, I was called A LOT because he was crying and nobody could calm him down. He even ran out of the classroom and into the parking lot once! There weren’t many specific instances that I was called to school between kindergarten and second grade, but now that I think back on it, I believe the teachers didn’t make a big deal out of his behavior because it’s fairly common for kids that age.
When he went into third grade, my oldest son was a student teacher, and it happened to be for Trey’s PE class. His PE coach stayed in communication with us both and would tell my older son things that happened, such as him crying or being picked on, and she would email me about it. One day I was in the car line to pick him up, and she came and told me that Trey was inside crying and no one could get him to move. I left my car in the line (there was no moving it out of line) and hurriedly ran inside to see what his problem was and to get back in my car before the line started moving. When I got inside, he was hysterically crying. I asked what was going on and was told he was upset because his car rider tag that he needed every day got ripped in half. No big deal, right? In his mind, it was a huge deal, although I did not know it at the time. I had so much going on in my life, this incident did not raise any red flags to me. My husband had been commuting to Arkansas for work for two years at this point, and was only home on weekends. I had a senior in high school and a toddler at home with me. We were also preparing to move to Arkansas as soon as my oldest graduated. So we were selling our house, looking for a new one, and to top it all off my youngest developed a very severe infection that required multiple trips to Dallas Children’s Hospital.
We moved to Arkansas a month after graduation. Trey, age nine, would be starting fourth grade in a new town, a new state, a new school (that is massive by the way compared to his previous school). We had always lived in the country, with few neighbors and nobody his age close to him to play with. We moved into a neighborhood with tons of kids to play with. Perfect, right?? Nope! This is when I started to get concerned. Neighbors would call me and tell me that he was in their yard or driveway crying and would not stop or move, and they didn’t know what to do. It was usually a reason that I felt was silly to be crying over, but he thought it was a major deal. It was not long after school started that I was getting phone calls from the teacher, the counselor, and the principal about his crying in class or refusal to participate.
They pretty much told me that it was absolutely not normal behavior for a fourth grader to be having and felt we should have him evaluated by a psychiatrist. We knew something was definitely not “right” about his behaviors. Being brand new to the area, they directed us to the program that the school used for evaluation. The testing process took months and months. He took two or three types of tests, I took a test, and his teacher took a test. In the meantime, we still didn’t have a diagnosis, but he was seeing a therapist once a week that came to his school, and he was slowly improving. Finally in the spring, we got a diagnosis from the psychiatrist and were referred to the psychologist for explanation. The doctor asked if we know what Autism Spectrum Disorder was. We didn’t. I always associated Autism with the movie Rain Man. He took out a book and flipped to a page and said, “Here. Read this.” We read the symptoms and signs of ASD, and our jaws dropped. This was Trey. Although not every symptom fit, there were more than enough that did. He was also diagnosed with Anxiety.
Autism is a complex thing to diagnose because the symptoms and signs vary so much between each individual. And with Trey being high functioning, it was easy to miss the signs. If we had been educated on Autism, we could have had him in therapy ten years sooner. I felt so much guilt for not catching it, all of the times he got in trouble for crying for no good reason, getting yelled at for walking on his toes, trying to force him to eat SOMETHING different. Haircuts were the absolute worst when he was little. We had to bear hug him every single time, so we let his hair grow out until we couldn’t stand it anymore. Doctors visits, shots, taking medicine, dentists–we dreaded every single one of those. He has gotten much better with the doctor visits, dentist, and shots, but still can’t swallow a pill, which makes giving medicine to an eleven-year-old difficult. Everything has to be liquid. But, he is a pro at haircuts now and has even experimented with different hair colors!
He has a Sensory Processing Disorder as well. Bright lights hurt his eyes, sounds that are normal to us are magnified to him, smells are extra strong. He is sensitive to tastes and textures. He does not like wearing clothes. They can not have any tags and must be super soft. He does not like to be touched or look you directly in the eyes, and he has dark circles under his eyes. He does not like to leave anything unfinished, such as a game or activity. He is kind of childlike. He plays better with younger kids. Most kids his age are on another level of maturity. For instance, he collects “plushies” (stuffed animals or characters). He sleeps with them and likes to take one or more with him when we go somewhere. His little brother loves it. He is five years younger. His older brother does not seem to understand why he behaves the way he does, even though we have told him why.
We definitely had to make adjustments in the way we parent him. Normal parenting techniques go right out the window when you are dealing with Autism. We had to realize that his brain does not work the way ours does. He does not know how to tell you how he feels about something, which is why he cries. It is the way his brain tells his body to express emotion. He rarely smiles, but he is a very happy kid. I love to capture those rare times when he finds something so funny that he laughs and laughs and laughs. Most of the time what he thinks is funny, is not as funny to us as HE thinks it is. A really good comparison to Trey would be Sheldon from the Big Bang Theory. He does not understand sarcasm or joking. Everything is very literal to him. He is clumsy and uncoordinated and has been known to fall down while standing still. He is very subject focused, is interested in one thing or topic for a period of time, collects every toy, game, or book on that one subject. He does not like to get rid of ANYTHING. He has to be reminded or told to do things constantly, even things he does every single day. That’s a daily struggle for me. He does not like to go outside very often. He likes video games, legos, reading, board games, card games, and playing chess. He’s in the chess club at school. His favorite thing to do is go to the arcade and play games.
It can be challenging to do family activities that everyone can enjoy, but we seem to make it work. He has been on anxiety medicine for a year and a half now, and in therapy for almost two years. He has things that he has overcome, things he still struggles with, and he has learned to handle social situations that make him anxious or upset in a way other than shutting down and crying. He still has meltdowns, but we work through them, and he overcomes them much faster. He does great in school and gets mostly As. He has learned to seek out the kids that have the same interests as he does, and to stay away from the kids that are not so nice to him and pick on him. All of the kids in our neighborhood and their parents know about his Autism, so they are understanding and accepting.
We have an amazing church family, and he is part of the Junior Youth group. He loves to take classes during school breaks at the Community Center, such as Lego Camps. This past summer he took one on how to design video games. He absolutely loved that camp and designed four original video games that he got to bring home. His dream in life is to become a video game designer. I have no doubts that he can make it happen.
I would say that some of the most difficult things about being an Autism parent the questions and reactions from people that do not understand it. Like, when people suggest that we should really make him eat healthier foods. Believe me, I know this and if I could make him, I would. They suggest that wejust take away all of the foods he will eat and only give him new foods, and that if he’s hungry enough, he will eat. No, he will not eat. The amount of anxiety and fear that he feels when he’s asked to try something new is beyond comprehension for the non-autistic mind. An autistic person will literally starve. They suggest that we should discipline him more and then he wouldn’t act the way he does. I heard this a lot when he was younger, and he had his share of discipline, to no avail. Different approaches and tactics must be used on the autistic child. I am no softy with disciplining my kids. Just ask the other two! People say that we can’t just let him have everything he wants every time he cries. I pick my battles with him. If I know he is legitimately upset about something, we work it out together and compromise. He does not always get what he wants. People have asked me, “Are you sure he has Autism? He looks normal to me.” Well, I’m pretty positive that he has it! Kids with Autism might have slight physical characteristics that are noticeable, like repetitive motions, lack of eye contact, walking on toes, dark circles under the eyes, but most are not noticeable in a high functioning Autistic.
All of that, plus the everyday frustration, constant fear, and worry that something will upset him and he will have a meltdown. Meltdowns are not fun for anyone within earshot or eyesight of him.
My advice to anyone that is just finding out their child is Autistic would be to educate yourself and everyone around you about all aspects of Autism, read everything you can, and do research. Get your child into whatever type of therapy they might need ASAP, because it helps. If you are in a small town with no resources and not so good medical options (as I once was), go to where the help is, even if you have to drive two hours to get it. Having a child with special needs is a blessing, in my opinion. Trey is the most unique, friendly, caring, loving, smart, honest, sweet kid you will ever meet, and I am proud to be his mom.
My goal in telling our story is to bring awareness and education to everyone, so that no parent has to struggle for ten years before realizing their child can not control their behaviors, by no fault of their own. Autism is not a bad thing, it is simply an adjustment in our lives. I am thankful for the opportunity to tell our story, and I hope it helps at least one person.
A great website about Autism is www.autismspeaks.org.