Lost In “The Spectrum”: The Joy of an Autistic Child

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Again, I must remind you, this is MY EXPERIENCE ONLY. Autism is different for everyone. I never want to hurt anyone’s feelings. I’m just being real.

Everyone knows that autism can be daunting. We all know that it tries our nerves and patience at times. It’s so frustrating to put everything that you’ve got into a child only to feel like it didn’t help them at all. It’s mind-numbing to try to comprehend that regardless of all of your efforts, your child is still autistic. While you may say that autism is not something to be corrected, I always wanted my son to have what we think of as a “normal” life. I wanted him to have friends and a girlfriend. I wanted him to get married. I wanted him to drive willingly and get a great job and be financially secure. It scares the Hell outta me to think about dying and leaving him at the mercy of the World. I have to stay real healthy.

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Having said that, I must also say that there are unique joys in raising an autistic child. Parents of average children have many of the same frustrations that we do but while they have the typical milestones that we long for, they don’t have the unique perspective of autism in their view of life. I absolutely love the fact that my son has never bent to peer pressure and can’t imagine caring what anyone thinks about anything he is, does, thinks or says. I love that independent, “So what?” attitude. Other parents spend endless hours putting emotional band-aids on their kids when they begin to grow up and venture into the World. We don’t. Our kids reject the notion that anyone’s opinion other than theirs is even remotely important. If someone rejects them or laughs at them, it’s usually meaningless. While they are targets for bullying, bullying is not particularly effective on them. They will usually either just walk away or end it quickly. By the time we find out what’s going on, it’s over. I love having a child that can’t be successfully bullied. You have to give a damn about what someone thinks for them to effectively bully you. My son couldn’t care less.

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I believe that all parents go through a stage when their child is young where we think to ourselves that we wish that they would stay little for a long time. I remember one night when I was putting Lucas to bed, I was praying for him as I did every night. In my prayers, I  remember asking God to “keep him little for a long time.” I know, it’s selfish and stupid, but I so loved my little one. I dreaded the time when he would be at the mercy of the World that had dealt harshly with me. Everything in me longed to protect him. I knew that as long as he was little, I could. I already knew that he was unusual, that he would have difficulties that were greater than mine. This article is not about me, so I will just say that even though I should have had a very sheltered, easy life, there were circumstances that had made it more difficult. I simply could not imagine life more difficult. Later, when I realized that Lucas certainly would be “little for a long time”, I realized that in many ways, God had given me exactly what I asked for that night. Those of us who enjoy nurturing others, have someone who needs that nurturing. Even though this is something that no one talks about, it is real. While there is NO WAY to make someone autistic, like people infer because we hover and dote on our children, it does seem that quite often, we are paired with these children who need natural nurturers. The task is daunting, but we always feel needed. This is in no way intended to fuel the lie that mothers are responsible for autism. That is a lie out of Hell. Anyone with any knowledge of autism knows that no one is that powerful. Autism is an all-encompassing disorder that affects every aspect of a human being. An autistic individual is different from the ground up. Many of these differences are wonderful but they are all difficult for them to navigate and they need our unique gift of care giving. They give us purpose in a World where that can be difficult to find.

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When our children are happy, their joy is pure. It transports us back to our childhood. Non-autistic adults derive happiness from sources different from our kids. Our kids can be joyful in the moment with no thought of the past or tomorrow. They don’t need recreational drugs or alcohol to arrive at this moment of joy. A funny memory or anticipated new purchase can bring about smiles for miles. Their laughter is spontaneous and intense. Sometimes when Lucas laughs, I remember moments from my childhood where I almost got in trouble for laughing. You know, those times when everyone was silent except you and your best friend but you just couldn’t stop laughing. I even remember getting my Mother in trouble when I was 11 years old because my arm was stuck in the back of a dining room chair at the home of the  Chairman of The Board of Deacons in my Daddy’s church. Our laughter was uncontrollable and inappropriate and Lucas transports me back to that time. Location or appropriateness has no bearing on the laughter of my autistic son. In a World where almost no one laughs or smiles, he is a source of spontaneous joy.

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Our children really do have unusual gifts and talents sometime. While Lucas is not a savant, he knows things that broaden my horizons and teach me things that I might have otherwise forgotten or never known. When he was only 6 or 7 years old, he referred to “that purple sound” in the theme song for “Barney the Dinosaur”. I stopped in my tracks. I looked at him incredulously and began to question him. He assumed that everyone knew the color of various sounds. Most people are unaware that sound and color both have Frequency. Frequency is the link between the two. Lucas informed me that “All C’s are green.” I have discovered that this is different for different people. Lucas sees green for C’s, someone else may perceive a different color, depending on the source of the sound. The name for this gift is Chromesthesia, sound-to-color synesthesia where sound automatically evokes an experience of color, shape and movement. It’s real. It’s hard science. They are NOT crazy. If I had not known Lucas, I would not know chromesthesia. I had heard of it but had never been around anyone with it. When Lucas went to  college, he had a teacher with this gift. As far as I know, she is not autistic but it’s entirely possible that she falls somewhere on the spectrum. These children open our minds to so much!

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Have you ever been on vacation with other adults who somehow manage to make a great trip merely another day? I can promise you that you won’t have that experience with an autistic individual along. While some of our kids are difficult to take anywhere, when we do muster up the courage and resources to travel with them, the trip will be anything but boring. It’s unbelievable how the average adult can look at a glorious display of nature, or even man’s talent, and see nothing. An autistic individual sees the wonder in it all. While they may not be able to communicate what they are experiencing, when and if they do, in any fashion, your eyes and your heart will be opened. I remember staying in the aquarium in Gatlinburg, Tennessee for EIGHT (8) HOURS because Lucas simply would not leave. This aquarium is massive and has sharks and all kinds of marine life. The building is very user friendly so that you can move around from one exhibit to another in more than one way. There are inter-active displays and souvenirs. Lucas could not get enough of that place. So often, people spend money for their families to go to an attraction during vacation and they walk through in 30 minutes at the cost of hundreds of dollars. We got a full day and a complete education on marine life that day. The real kicker came on the way home when Lucas talked about, or mimicked, the narrative that we heard over and over.  I can answer about anything you want to know about the ocean now. Fifteen years later, I remember that day with delight. Had my son not been autistic, I would possibly not even remember going to that aquarium. It would have been a non-event. The same is true of many other museums and art galleries. We always got our money’s worth. If you have an autistic child that you can take out, you might want to try museums and aquariums with them. They seem to love the order and detail that goes into the displays. They also seem to enjoy the orderly system of the walk-through. Be prepared to be there a while and have money for the souvenir shop because I promise you, they will want the biggest, most expensive offering that the shop sells. Just buy it, you will never regret those days.

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Last but far from least is something that I refer to on more than one occasion. While Lucas has cousins that have lived a large part of their lives in jail or rehab, he has not. The young people who are highly social can do some stupid stuff to impress their friends. Autistic people don’t see the need to impress anyone. The boys don’t normally drink and drive and father children at 15 and the girls are not quick to chase after boys and have a baby while they are still a baby themselves. As a matter of fact, many autistic individuals are asexual, with little to no sexual behaviors whatsoever. While you would not choose for your child to grow up without a family of their own, this trait can certainly keep many of them out of a lot of trouble. Lucas has never understood why anyone would ingest drugs or alcohol. He understands the use of prescription medications but is highly intelligent and immediately sees the dangers of illegal drug use. He understands the legality of the issues around marijauna. One time when he was abandoned by a professor that he rode with to a music event, he had to ride home with other college students. A girl fired up a pipe and starting acting crazy while she drove down a dangerous mountain. When I picked him up at the college, he was furious, stating that he would NEVER go to anything like that again. From then on, I always drove him, sometimes hundreds of miles. I would do it all again. He has a drivers license and is an excellent driver but simply hates to drive. I consider it an honor to chauffeur a young man of such high standards, especially since he’s my son. If you have an autistic child, they may never be in the trouble that so many others accept as a normal part of becoming an adult. Jail, unplanned pregnancy, drug abuse and alcoholism are not a good part of the adult experience and you will most likely never have these heartbreaking experiences with your child. I have relatives who tried to infer that Lucas’s problems are my fault. I have asked them to explain what happened to their kids.

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While the difficulty level of raising our children is higher than that of some children, they are worth it. They have high standards, high intellect and tremendous capacity for joy. Absorb that energy. It will give you life.

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