During my third pregnancy I was put on bed rest and was quite ill. My husband's father came to visit and was a wonderful help. He painted the entire outside of our home and helped out with our then, 3 year old son. At that time, I knew there was something different about our son, but most just brushed it off as, "he's just a strong-willed 3 year old boy, he'll grow out of it.". I didn't see that at all. One morning, I prepared some oatmeal for our son and sat him at the table with his grandfather and then went to lay down. A few minutes later, his oatmeal had cooled too much for him to eat it after talking non stop to his granddaddy. He asked to get it warmed up and his grandfather told him he wasn't going to heat it up since he'd spent too much time talking. Our son has to have his food at the right temperature or he cannot eat it. Temperature, texture and smell of foods can actually make him gag and he'll lose the entire meal. After asking to warm it up again, his grandfather told him that if he wasn't going to eat it, then he was finished. Our son then replied, "No, I'm not finished. I need it warm." Then his grandfather told him that he was finished and took the bowl away. That's when the meltdown began. It was a total miscommunication. Our son sounded as though he was being rebellious and disrespectful, but it was neither. In our son's world he was hearing his grandfather say he was finished, when in fact, literally he was not finished, there was still food in the bowl and he still wanted to eat it and was trying to explain that he needed it to be warmed to continue eating it. His grandfather was saying, if you don't obey and just eat the oatmeal the way it is, I'm going to take the bowl away and you won't get it back. Our son cannot "read between the lines" and pick out inferences, he is very literal. What you say is what he hears. If you tell him today, it's raining cats and dogs outside, he will immediately picture cats and dogs coming down from the heavens and will giggle out loud. Our son remembered that interaction with his grandfather for a long time and never understood why he got punished for wanting his oatmeal warmed up. Even after explaining what his granddaddy meant, he would say, "But that's not what he said.".
As you can see, people on the autism spectrum think differently than we do. Everyone of our son's meltdowns are due to sensory overload, change in routine or miscommunications. Our son was diagnosed with autism four years ago. Since then, I have learned so many things about our son and how he thinks and have a much clearer view of how he sees this world and now, I understand why he reacts the way he does. Earlier this year, my son's teacher had the class fill in bubbles on a standardized test. She quickly explained to the class on what they were to fill in. When our son got to a particular box with a bunch of numbers, he asked the teacher if he was just supposed to fill in any of the numbers in that box. The teacher's reply was, "I'm going to pretend I didn't hear that.". Our son came home and asked me why his teacher would ignore him. After getting a full explanation of what happened, he told me that when a person pretends not to listen to someone, that they are actually ignoring them. He never did fill anything in that section because he honestly did not know what to put in there. His teacher thought he was being disrespectful even though she is fully aware that he is on the spectrum.
The teacher's unawareness goes to show that there are so many people who are aware of autism and some of the behaviors or symptoms of autism, but their awareness is minimal in the overall picture of autism. Autism affects how the person thinks, communicates, perceives this world, how their senses are affected by everyday life, such as touch, taste, smells, sights and sounds, how schedules and routine are musts haves in their world to feel some sense of order in this highly chaotic world. Our son has an above average IQ, but will not get a long term project done without a specific schedule. If he's given a large project with a broad topic that is due in two months, like a Science Fair project, he is confused at what is to be done first and to just do the whole project at once is impossible, so it doesn't get done at all. If he receives a schedule of what is specifically expected of him and when each part is due, no problem! He'll pass with flying colors. Without the schedules and routine they often feel lost, overwhelmed and confused. This is why it very important for mainstream teachers to receive more education on Autism Spectrum Disorders, after all, they will have at least one student in their class each year on the spectrum. My husband is a fifth grade teacher and has at least two children on the spectrum in his class this year. He was amazed at hearing these children have a hard time in some of the other teacher's classrooms, but he rarely has those problems in his class. I truly believe it's because he is aware and knows exactly what to do for those children and because of that, they do well and those children love him. Some children are more noticeably on the spectrum than others. For example, one may have a hard time sitting in his seat or he may keep repeating words you say or rock in his chair and the other may sit in his chair, but is bouncing his legs to cope with sitting still, is quiet and looks attentive. Our son has learned coping skills to help him with some of the more outward appearances of autism, so it's not as noticeable until someone or something throws him off, such as throwing a paper airplane at him. Most kids would laugh and brush it off. The first initial reaction of our son would be, "Who threw this at me?!?" then "You are not supposed to throw paper airplanes in class!" and then erupt into tears that an injustice has been done because the teacher is angry with him, not the student who threw it. The teacher does not see why he's reacting, they are just seeing the reaction and have to get control of the class and immediately scolds at the yelling child. I'm not saying the teacher is wrong, but I am saying that if the teacher understands the reaction, he/she may say to the yelling child, "I see that that made you angry, let me talk to him while you take this note to the librarian.". Of course, there isn't really a note, but distracting the child and knowing the teacher recognized his frustration and knowing that he/she would talk to the offender will help him to calm down and get back to the task on hand much quicker. After the child threw the paper airplane at our son yesterday, our son did not react in his usual manner, but instead threw the paper back at the child. The teacher gave both children a detention for flying paper airplanes during class time. Our son told me he was mad and threw it back at him, he did not fly it back at him. I signed the detention form and told our son that I knew he wasn't flying it, but he can't throw anything at people, even paper. Then I told him, next time just wad it up and throw it in the trash. Wadding it up will ruin his fun and you won't get into trouble. In my mind, he did great! He didn't have a meltdown because of that (although he did for getting the detention) and he's learning that certain responses are not acceptable, but he needs to be told what responses are acceptable, since in seventh grade tattle tailing is unacceptable. So, telling him to wad the paper airplane up and throwing it in the trash was an acceptable coping mechanism.
I believe that if people understand autism, not just know the definitions of autism, but actually know what autism is and how it affects each child or adult, then and only then will people actually be aware of autism. It's not about a label, it's about getting these children and adults help so they can cope in this world. So many people still think autism is childhood schizophrenia or they have just one specific example or idea of what autism is. Childhood schizophrenia is very rare, autism is not. Autism also is different for each person...some rock, some don't, some speak eloquently, some don't, some have extremely high IQs, some are average and some are low, none are the exact same. I don't know how many times I've heard people ask, "Why do you think the rate of autism has gone up in the last twenty years and keeps going up?". My response is that the rate of autism has not gone up, it's been there all along, it's been called other things, but it's been there. What has gone up is the rate of DIAGNOSIS, meaning that there are doctors and teachers that have become more aware of what autism is and the public is becoming more aware itself. Now, if we could all just get past the stereotypes and actually try to peer into the thoughts and lives of these that are on the spectrum, maybe we could see what they are seeing and have a better understanding and become truly aware of what they deal with on a day to day basis, and let me tell you, if you think it's hard living your life, imagine how difficult these kids and adults have it. Being a parent is the hardest job you'll ever have and being a parent of a child with any disability is even harder. A parent of a child with a disability is working hard, maybe the hardest of any working person in this world, but the rewards are great! In the end, I'm pretty sure that these kids work harder than us. They are Super Heroes in my book!!!
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