Autism: It IS Personal

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.

Causes
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
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!

Working with Frog CMS

My personal website was something I had a lot of pride in, because I wrote every bit of code from the HTML to the CSS entries. The problem is, it was a beast to maintain. For my blog I use Wordpress.org’s download that I’ve had to lock down significantly to keep it clean (after two reinstalls, I’m wavering on using Wordpress). And while I have some experience with Wordpress in the past, I’m not sure I want to use them to serve up my personal website. So I started looking at Content Management Systems (CMS).

In searching for a good content management system, I looked for something well known and highly customizable. I started with Joomla!, which has had a lot of recommendations and is apparently a very powerful CMS used in the web industry. I downloaded and installed it on my test domain to get a feel for it, and didn’t like it. It was way too cumbersome to manage for a little website like mine, and very difficult to work my way around in it. It took me two days to figure out each part of my website, and that’s a huge learning curve.

So, burned on that (and glad I didn’t replace my original website yet), I started shopping around. I came across a website that recommended a lot of different management systems, and mentioned Frog CMS. They said it was a small, simple CMS system that was pretty flexible for most things (easy to set up a blog with it, for example), and it was simple to use.

So, I visited their website http://www.madebyfrog.com/, to see what it could do for me. About five minutes reading through the extensions did it for me: I was ready to do my install. The download was simple, but the setup wasn’t that simple, though after a few tries and getting the right password for my MySQL server (very critical there!), it was up and running on my test domain. Within an hour, I had a great template with which to work, and another hour had the CSS styled exactly as I wanted it (minus a few little tweaks).

Migrating the initial web content from my old website took a little doing, but after another hour I had my website the way I wanted it, with all my images set correctly, Header and Footer built up and exactly the way I wanted it, and all without having to look too hard for each component.

The strength of Frog CMS, from what I can see, is that it doesn’t deviate too far from the standard web page setup. It keeps it simple for web developers who feel comfortable with HTML and CSS, and it’s really easy to create a nice HTML5 friendly website using any of the existing templates. All the templates are easy to reconfigure with a little CSS or HTML knowledge, making it a great platform for any website.

So that was my experience using Frog CMS. I’d recommend it to anyone starting a new website that just wants something simple and easy to configure without a lot of hassle. Granted, it’s not what your big office will be using to build their site, but for anyone just looking for great content management without the bells and whistles, this one definitely takes the cake.

Five Things I Didn't Know About Autism

Article first published as Five Things I Didn't Know About Autism on Technorati.
I’ve been told that having a child with Autism will change your life. Things will not be the same as they were before. I was also told that having a child will change things. But if you only have children with Autism, you don’t know just how different things become. So here is my list of things I don’t know are different:

1. Raising Children: I’ve always been told that raising children would be challenging, and when we had our first child I wondered what all the fuss was about. Sure, he would need attention (which meant less time on the computer games), but other than that I had a great first child. My oldest was generally quiet, curious, and loved to play. Everyone told us we were lucky, until we found out that he had Autism when he had turned three without saying even two words together. ?Then things like his inability to sleep at night unless he was held, his fascination with mechanical things (wheels, fans, etc.) and his desire to stack and order became clear. But until it was pointed out, I didn’t know I had a challenge raising my son. We just worked with him as best we could without pushing too hard, and ended up with a generally well behaved child with the exception of the occasional melt-down when something triggered his Autism.
2. Approach to Teaching: I’m a teacher by trade (or instructor, as I’m at the University), and an instructional designer. I spend a lot of time trying to think of ways to better approach my students, reach out to them, and help them retain the knowledge they want from me. Most of this is done on the fly while teaching in front of a class, with a lot coming from past experiences with different types of students. So when it came to teaching my son to write, read, or practice Math, it all came down to the basic skills I use with Adults that I try to apply to him. And I would get results that tended to last for a while, though they would occasionally regress (which is normal with Autism). ?The thing is, I didn’t know this was an issue. I thought this was what all parents did with their children. I mean, don’t all parents like to sit down with their child during their play and try to see what they do, how they react, and how you can tie in what they are doing with what they should be learning? Apparently, that’s not the case. Many parents out there trust in their children’s natural instinct to imitate their peers and parents to get a lot of their learning done. If you are a parent with a child on the Spectrum, you know that imitative learning is not common. So everything, from reading, to writing, to speaking becomes an exercise in trying to learn via other means. We’ve found that digital methods (multimedia and games) tend to work well with our sons, and we let them go with an iPad or iPod Touch. But again, this was something we just did, and didn’t know we had a unique and difficult situation.
3. Bolting: When my oldest was younger, we would constantly walk with his hand in ours. Perhaps it was because I was over-protective, but he would often just take off and run without looking back. Occasionally I would let him get quite far before I would race after him, but I didn’t think much about it. We just learned that when walking with our kids, we held their hands. They felt secure, and we felt secure. We didn’t know about bolting. ?Bolting is an Autism trait that most kids on the Spectrum go through up to the age of 4. They will just take off an run without looking back, forward, or to the sides. Their Wanderlust is pretty well documented, and many children on the Spectrum have been endangered or lost because they have been unable to keep close to their parents. We naturally wanted to keep our kids with us, and so we always walk with their hands in ours. We didn’t know you were supposed to, we just did it.
4. Diet: Our sons are picky eaters, but not in how you would imagine. One son will only eat meat, dairy products, eggs, and some breads (not white, but wheat, sourdough, rye, etc.). The other son prefers salads, dairy, all breads, and eggs. Occasionally we can get them to try something new at a restaurant or buffet, but they usually keep to their specific likes and dislikes. So, we kept them on the diets they like, making sure they get as much from the four food groups as possible within their constraints. ?What we didn’t know was that persons with Autism tend to have specific likes and dislikes because of the type of food. Not so much because of taste (though that is in the equation), but rather texture, color, and smell. My oldest likes his textures more firm like cheese, or crunchy like chips. My youngest loves soft breads with crunchy chips, crisp lettuce and veggies, and firm cheeses. It wasn’t until we learned that other children learn their likes and dislikes more from social queues (I don’t like lima beans because they are not popular in my cartoons!), as well as flavor. Rarely is it because of texture. That’s unique to Autism.
5. School: Our boys both go to a special education class where they focus on the skills necessary to become mainstreamed within the classroom. We have regular meetings with the teachers, keep in daily contact with them through notes in a notebook, and try to reinforce what they do at school in the home. I had assumed this is what every parent did when they were concerned about their child’s education. Apparently I have been wrong. ?Teachers look to the day when working with parents becomes the normal, established way to reach all children. Teachers can only do so much, particularly when you have 20 to 30 kids to one teacher (and no aides). They want all parents to come to them for a plan, and back them up when it comes to trying to find ways to get their child to learn. But apparently parents get defensive when teachers suggest goals with which parents could help at home, and teachers are slowly getting jaded or hesitant to suggest anything. I can often pick out a teacher who has been in the business for a while, because they are hesitant to mention anything negative about your child. It shouldn’t be that way. Teachers should be telling the parents where their child is struggling, and with the parents help make a plan to help their child achieve their potential.

So those are the five things I didn’t know going into parenting a child with Autism, and I’m glad I’m still learning. It’s a great opportunity to learn how to help your children.

Flame Retardant Chemicals and Autism? No Clear Connection

Article first published as Flame Retardant Chemicals and Autism? No Clear Connection on Technorati.

While reading my daily articles I came across an article in the Press Release section of the San Francisco Chronicle called "Study: Autism Linked to Flame Retardants - The Futon Shop's Chemical Free Mattresses are the Next Step in Helping to Reduce Rates of Autism". It sites a research study done by Irva Hertz-Piccotto, Ph.D. chief of the division of Environmental Health at the University of California Davis that supposedly proved a connection between PBDE's, which are flame-retardant chemicals used in furniture (and other things), and Autism. It's a PR piece done by a furniture company that doesn't use PBDE's, and so they are trying to "inform" (or better yet, scare) consumers into purchasing their products.

Anytime I see any claims like this, red flags fly all over the place. I found it interesting that so important an environmental connection as this would be so unknown, and only first published by a furniture company. Nope, something wasn't right. So I pulled open Google Scholar, and searched for the research paper.

It wasn't easy to find, but I found the article in the journal Environmental Health (2011, 10:1). The article is located here: http://www.biomedcentral.com/content/pdf/1476-069X-10-1.pdf, if you care to read through it yourself. The research project was more of a survey, looking to compare PBDE concentrations in children with Autism and those in the control group. The qualifiers were that though current levels could be influenced by a number of conditions (such as diet, current exposure, previous exposure, etc.), the hope was a possible connection between fetal exposure to PBDE's through the mother would reflect an environmental cause for Autism.

The research pulled plasma samples from the Autism group and the control group. Their PBDE concentrations were tested, and compared. The results? "Children with autism/autism spectrum disorder and developmental delay were similar to typically developing controls for all PBDE congeners, but levels were high for all three groups." So, based on this research, there was no difference between concentrations of PBDE's and a correlation between PBDE's and Autism. Now, that doesn't mean there isn't any possible environmental triggers or causes, but it just points out that the possibility of a connection between PBDE's and Autism are remote.

So, to the Futon Shop, the company that made the claim, I would say they need to check their sources a little closer before they try to use scare tactics to sell their products. I'm all for naturally produced and protected products, but I'm not a big fan of using Fear, Uncertainty, and Disinformation by any company to induce sales.

Keeping Autism Awareness Alive

Article first published as Keeping Autism Awareness Alive on Technorati.

Today marks the end of April, and the end of Autism Awareness Month. All month businesses have had special promotions to raise funds for research about this very prominent condition, while also focusing on providing events for families who deal with the condition every day. But, like Breast Cancer Awareness Month or Black History Month, it seems the public mindset feels they have done what they needed to do when they were assigned to do it, and will move on without another thought. African Americans don't stop contributing to our Country just beacuse it's not February. People don't stop getting breast cancer just because it's not October. And parents, siblings, and children don't stop working with those on the Spectrum just because it's no longer April.

So what can you do every day to help someone with who deals with Autism on a daily basis? Here are a few pointers:

1. Don't Judge: Don't be judgemental of someone who is struggling with their child. Chances are that child may have Autism, even if he doesn't "look" it. Autism doesn't really have a visual cue or physical "look" that identifies it. Children with Autism look just as beautiful as neurotypical children. Parents of children on the Spectrum are acutely aware of their child's behavior, and don't need your reminder. Sometimes a reassuring smile is all you need to give in order to help a parent feel more comfortable.
2. Don't Stare: Children on the Spectrum are completely aware of their surroundings. They know when you are staring, and they know what proper behavior is supposed to be. They just can't control themselves in their own behavior. Don't stare, because that makes them feel uncomfortable (just as you would feel uncomfortable when someone stares are you). They are real people, and want to be treated as such.
3. Don't Talk As If They Are Not There: Again, children with Autism are acutely aware of their surroundings (often too aware), and can hear you. Just because they don't speak or don't look at you when you are talking doesn't mean they can't hear you. Let me give you an example. Early in our oldest's diagnosis, we went to IHOP. It was loud, and the service was very slow. Our son became agitated and needed a walk to help calm him down, so I walked him around the unoccupied areas of the restaurant. A patron, talking to her friend, said "I'm glad MY children are all well behaved". This set my son off into another bout of fits. Needless to say, we have never returned to that IHOP again.
4. Try to Understand: Children with Autism are puzzles. They think differently, have unique perspectives, and want to know all about their world, or at least specific aspects of it. If you take time to watch them, you can gain insights into their world. Just minor glimpses, but it's often enough to hook you in. You will want to learn more, and it becomes an exciting endeavor to become part of their world.

Autism has increased in diagnosis to 1 in 88 children in the US, and 1 in 47 children in Utah (though there are some questions as to those numbers). It's becoming a more common diagnosis in our lives, and is most likely impacting you, the reader, in some form. You may have a child, neice, nephew, cousin, brother, sister, or have a friend that lives with a person on the Spectrum. Instead of writing them off as "stupid", "dumb", or any other adjective that could be applied, start looking at the way they learn, interact, and explore. I can guarantee that your life will change, and definitely for the better.