I find that when someone hears that we have a child with an autism spectrum disorder, the inquisition begins. Autism to some is unknown territory, and there is plenty of misinformation that is pumped out by the media and various groups, who while they think they are doing something good, they only making it tougher for those who are winning daily battles in the trenches of parenting a child with a spectrum disorder. While I don’t consider myself an authority of education on Autism, Asperger’s, or associated disorders, I am a mom who handles it every day to the best of my abilities. I have been to the conferences, read the books, and listened to countless “experts” and their various theories on causes and cures. While some are very insightful and give me hope, others are pure opportunist, hoping to gain profit on the fears of an unknowing, desperate parent.
One of my new favorite board games is called “Fact or Crap”. Let’s go over some of the Fact & Crap of Autism, Asperger’s and the spectrum, shall we….
Fact:
The National Institute for Neurological Disorders states, “Autism (sometimes called “classical autism”) is the most common condition in a group of developmental disorders known as the autism spectrum disorders (ASDs). Autism is characterized by impaired social interaction, problems with verbal and nonverbal communication, and unusual, repetitive, or severely limited activities and interests. Other ASDs include Asperger syndrome, Rett syndrome, childhood disintegrative disorder, and pervasive developmental disorder not otherwise specified (usually referred to as PDD-NOS). Experts estimate that three to six children out of every 1,000 will have autism. Males are four times more likely to have autism than females.”
Fact:
Autism is called a spectrum disorder. This means that there is a range from low functioning, non-verbal, lack of certain functions, to high functioning, very verbal, yet are socially isolated, with eccentric behavior, obsessive focus on a certain subject, or object, and while they have an expansive vocabulary, they often use what some might consider an odd tone, or repetitive pattern. There are named disorders on the spectrum such as Asperger Syndrome, there is also PDD-NOS, which takes the characteristics of varying disorders on the spectrum.
Fact:
My son, Noah was tentatively diagnosed with PDD-NOS, and Sensory processing disorder after a very long and painful process at the DDBP (dept. of developmental and behavioral pediatrics) at Cincinnati Children’s Hospital. We have opted to follow the treatment plan for Asperger’s since Noah displays most of the characteristics of Asperger’s, while some of his skills fall into the other areas of the spectrum.
Now that we have established what the experts say about what Autism is, let’s get to the…
Crap:
Autism does not = Mental retardation. Believe it or not, I have been asked if his Autism means, “he is retarded? Does he talk? Does he function?”
Noah, like many kids on the higher end of the spectrum is extremely intelligent and has a high IQ. These kids are constantly thinking, and if they find a subject they find interesting, they will focus on it and ignore anything else until they feel satisfied. This can be difficult in school. Noah was interested in the science topic of spiders, but when the lesson was done and the class was switching gears to math, all Noah could think was questions he had about spiders. He could not switch gears to math. He demanded that we go to the library so he could get books on spiders. He spent countless hours on the internet “researching” spiders, and reading his books till he would fall asleep. Some of our greatest scientists are thought to be on the spectrum. There is even speculation that Bill Gates is. Everyone can remember someone from school who seemed “odd”. They were smart, but didn’t talk a lot, or they were really good at something and seemed to shut everything out. Noah is relentless in his pursuit of completely understanding a topic, and nothing less than perfection is acceptable to him. I would choose an accountant or surgeon on the spectrum with confidence.
Noah talks, and he talks a lot! How verbal a child is varies from child to child, and how comfortable they are in the situation. Those on the lower ends have difficulty with speech, and choose other forms of communication. While Noah is verbal, and very articulate, some have difficulty understanding what he is trying to get across. He tends to give the whole story, and then some. He may even add facts that he finds related, yet you or I would not see the relevance. And he will re-arrange the structure of what he is saying, like Yoda. But if Noah is not comfortable, or in a new place, or situation, or around someone he is unfamiliar with, he will not talk. It varies, he may be comfortable one day and chat with someone, then the next he won’t even acknowledge that person. The more patient a person is, the more likely they will get a positive response.
Noah functions very well! He is capable of anything he sets his mind to, which can be the problem some times. He has sensory issues and at times he can’t stand what others would find to be a non-issue. He can’t stand certain noises and “busy” senses. Being in a crowd, too much noise (like a parade), too much visual stimulation ( a class room where the walls are filled), strong odors, or tastes can make him feel like his skin is crawling and send him into a meltdown. He will rock and cry and we use techniques like brushing, or weight therapy to calm him down. We even have letters in our wallets in the event we make a scene and we have to deal with the police. It sounds crazy, but I heard of a parent that carried a child in full meltdown out of a store to be greeted by the police. Try explaining that your child had a fit over a tag in their shirt?
Crap:
Noah doesn’t feel emotion.
Noah feels emotions, despite not really understanding his, or emotions of others. From what I have been told by others on the spectrum. They understand facts, and what motivates certain actions. They also have a hard time with social norms, they say what they are thinking, or what the fact is. I don’t want to say Noah is limited in what he can feel, but he is grasping the concept of what his feelings mean, even more difficult what others feel. While at a cub scout meeting the boys were coloring pictures of food to make a food pyramid. Noah looked over to see that one of the boys was not making the peas they way he would have. So Noah took the peas, crumpled them up and said, “There, now you can try again.” Of course, the boy cried. Noah didn’t understand that he hurt his feelings. I asked him how he would feel if I did that to his carrots, he said, “I would say my work was not the best, and do it again till it was right”. When I told him that the other boy thought his peas were his best and right, Noah retorted how the rule of coloring is to stay in the lines. I realized that Noah applied a rule and could not understand anything less than following that rule. He will lecture people in the bathroom that they need to wash their hands, and call them dirty if they don’t comply and scrub up. This is something we work on daily.
Crap:
They found the cause of autism and it’s….this….or….that….
I don’t think that there is one singular cause of each case of autism. Do I think that vaccines cause it? There is one case where this was proven in a court of law. However I do not think that it is true for every case. Is it genetic? I cannot deny the truth of genetics. How can you say it is not when there are families out there who have multiple members on the spectrum. I am friends with a mom who has 3 out of 5 daughters on the spectrum.
The newest study I found has me fired up. There is a study that suggests that FAS (fetal alcohol syndrome) is the cause of autism. As if I am not judged enough by the public, now I have to defend myself against this! I know too many parents of kids on the spectrum, and I find this insulting to suggest that we were secretly drinking it up during our pregnancy. I am not saying that children with FAS do not get diagnosed on the spectrum, autism is a neurological condition and alcohol could affect development in uetero. However, every case of autism is not due to alcohol consumed during pregnancy. To suggest such a thing is not only insulting, but irresponsible.
I am not going to let the cause hinder my quest to make Noah’s life all that it could and needs to be. Which brings me to…
Crap:
You can cure autism with….or by doing this….or by not doing that…..
There is no magic blue pill, and spanking Noah will not “fix” him. I have celiac disease and I can appreciate the benefit of a gluten free diet. I have read Jenny McCarthy’s book, and have heard of how a gluten free diet has helped some children. However I do not think it is the “cure” for autism. The effects, and outcome of autism in an individual are as varied as snowflakes. What works for one child, does not for another. If it helps your child, I am so happy for you! However, I would not put all my hope in this therapy. I am not seeking out a cure for Noah. I am spending my time helping him grow, and develop into the person he wants to be. I want my son to succeed, and be happy. What more can a parent want for their child. God created him with a purpose and a plan. It is my daily prayer that I do all that I can to foster Noah’s progress in that plan.
I realize this seems like a rant, ok, it is a rant. But I want to be upfront on my views since I know that there will be questions, or comments, there always is. But now that we have this behind us, I can enjoy my posts that may involve my love and acceptance of Noah, and his “Noahisms”. It is an adventure parenting him, but I can’t quit, it can only go up from here. I will answer questions, just expect me to be honest. :)
