Thursday, May 24, 2012

Autism: It IS Personal

Boys with Autism sitting on bronze Tiger statues.Why is Autism so personal? Why do you have advocates of various Autism-Cause Theories fighting amongst themselves, or have parents desperately seeking out the latest and greatest treatment to make their children “normal”? Why is Autism so compelling, so intensive, and so consuming that parents are willing to spend themselves into bankruptcy just to get their kid to the point where they can hold down a job? It’s a tough question to answer, and it’s going to be slightly different for every parent. I think I can speak for most parents when I say, it’s all about the potential.

The Autism Spectrum is so diverse in it’s manifestation that it’s difficult to pin down what exactly is the cause. But one thing is very common: those with Autism definitely have a mind. They are smart, able to reason out much of their surroundings, and make connections between physical and abstract concepts. These are traits are clear signs of intelligence, but often they are hidden in the behaviors of Autism, such as sensory issues, inability to speak, issues with gross motor and fine motor skills, etc.

As a parent, we can see the potential in our children, if only these things were resolved. Some parents seek a “fix” to “cure” their children, others try therapy to teach their children to be “normal” in order to interact with others in society. More parents are seeking answers when there are none (currently), while doing everything they can for their children.

Regardless of the efforts being made by parents, society has been judging others based on the behaviors of their children on the Spectrum. Even though I know it was made in ignorance, I still remember a comment made by a patron of a local IHOP as we passed by, “I’m so glad my kids are well behaved”. Our son was 3, barely diagnosed with Autism, and we were still trying to wrap our heads around it. All of a sudden, through that comment, my son’s Autism was “my fault” as a parent, and I should have raised him better.

That seemingly passing remark became a very personal attack, perhaps because for generations (since the 60’s), it was believed that parents of children on the Spectrum were neglectful parents and they just allowed their children to run free without discipline. To this day prominent media figures have made this same assertion, in spite of the overwhelming evidence of genetic links of Autism and the growing research into environmental links. It’s a personal attack on parents when we already feel sensitive about the behaviors of our children. As such, many of us have delved deep into three aspects of Autism: Causes, Therapies, and Managing the Condition.

Autism is a difficult beast to get ahold of, even for researchers. It’s diagnosed based on observed behaviors, as opposed to blood tests, genetic research, or even physical appearance. Because it’s based on behaviors, anything that can cause that behavior can be technically called “Autism”. That’s why Autism is a spectrum of disorders to encompass any that have similar behaviors from clear genetic Fragile-X Syndrome kids to Asperger’s, PDD, and more severe Autism.

“The Cause” of Autism is just as elusive, because there are so many different disorders that can cause Autism-like behaviors. For instance, currently 26 genes have been identified with Autism, but if someone has a rare condition where they are unable to process gluten and cassein properly it can cause Autism-like symptoms. So while there are genetic links to Autism, it’s possible an intolerance and environmental stimulus can cause the same behaviors. Which is Autism? Both, by behavioral definitions. And that’s just the tip of the iceberg.

Therapies are wide and varied from the tried and true ABA therapies (proven through double-blind clinical tests to be effective) and various alternative therapies that can have potentially fatal side effects and no clinical testing for evidence of effectiveness (heavy metal removal, IV transfusions, etc.). Many, if not all therapies are expensive. Some are covered by insurance (depending on your insurance and State laws requiring coverage), and others, including a diagnosis of Autism, is not covered at all.

Before you think about a therapy for your child, consult your doctor. If he doesn’t know much about Autism or the therapies related to Autism, he will know where to look or to whom you should be referred. Always keep in mind three things: Safety, Effectiveness, and Cost. If it’s potentially life threatening, don’t do it. If it’s not proven effective, don’t pay for it. If it’s too expensive, don’t dig yourself so far into debt that you can’t get out again. If any two of these are aligned with the therapy, hold on to your wallet and walk away slowly. If the therapy meets all three, run.

I’m not going to tell you which therapy you should try, or which one works. I can’t, because I don’t know what your child is doing or anything about their situation. But I can tell you that often your child’s public school district will have experts on hand that can help guide you, if they don’t already provide many of the services themselves.

Managing the Condition
School is great, and understanding Autism helps, but nothing compares to the day to day operations that keep you and your family sane. As a parent of your child, you know their in’s and out’s. You know what seems to generally set off your child into a meltdown (though you may not know why), and you know your child’s habits. As such, you build up a home life that comfortable and safe for your child, and the rest of your family. Sometimes this causes struggles with siblings (both yours and your child’s), and often it will great raised eyebrows.

For example, we found that our son loved to wander. It’s a common trait in children with Autism, and he was keen to go walking around the block. Often we would find that he would just disappear, and we would go searching frantically for him. To solve this problem, we installed a double-locking deadbolt on our front door so you need a key to get in and out. We then installed a security door with double-locking deadbolt on the back door. Our back yard is completely fenced in, so he cannot wander out of the back yard. Eyebrows were raised when the security door was installed in the neighborhood, but once it was explained the neighbors were fine with the decision.
Day to day operations also include going out in public. You learn how to manage your child’s condition through tools (my youngest is easily distracted by an iPod Touch or iPhone), or through games (my oldest likes to be tickled). It’s all about finding a happy medium in managing your child’s behavior while in public. You also learn to avoid situations where your child’s behavior just can’t be managed. We take our children out to eat generally an hour before or after “rush hour”, so as to manage crowds and noise when we eat. We go to places we know both our children will enjoy, and make sure we move at their pace.

When you are a parent with Autism, you are pouring your entire lives into your children. There is no “ME” in Autism. And while you still find time to decompress (when the kids go to bed, generally), you really are trying to be a super-parent in helping your child learn how to be the best they can be. And so to all you parents of children with Autism out there, I salute you, and I know what you are going through. We are all in this together!

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