Wednesday, April 27, 2011

Autism Controversy: Belief or Disbelief and miseducation

Once in a while you can still come across someone who simple doesn't think that some form of autism doesn't exist. They think it's some kind of elaborate scam either by families or the "big pharma" to get money.

If you are dealing with autism I'm sure you wish you were getting money because of how much treatments cost. That being said, "big pharma" isn't raking in the bucks either for the same reason. Now the pharmaceutical companies are not the controversy I really want to get into here, so that's for next time. This time it's the struggle to get some people, sometimes important people to believe autism exists.

I'm talking about teachers, principles, some media platforms, and even doctors. The number of disbelievers has dwindled in the last few years, but they are still out there and can do immeasurable damage. A prime example of that damage is Mike Savage.

Back in 2008, radio show host, Michael Savage had this to say about autism: "fraud, a racket. ... I'll tell you what autism is. In 99 percent of the cases, it's a brat who hasn't been told to cut the act out. That's what autism is. What do you mean they scream and they're silent? They don't have a father around to tell them, 'Don't act like a moron. You'll get nowhere in life. Stop acting like a putz. Straighten up. Act like a man. Don't sit there crying and screaming, idiot."

This caused a massive outcry and picketing to remove Mr. Savage from his job on his very political talk show. It also caused a massive clash between his loyal listeners and anyone who disagreed with what he had to say. The danger of making a general statement like that (especially in the context delivered) is that it creates a misrepresentation of the condition. I literally came across hundreds of online comments to the tune of "oh, you have autism? Mike Savage says you're a fake" and that was one of the tame ones. There were even teachers and medical professionals who took to the political sense rather than the medical and it affected how they in turn treated autistic students and patients. The clash was a major chain reaction that caused a great deal of conflict. This is not to start a debate over Michael Savage, so such comments won't even be entertained. I say that, because I've already been in long tirade discussions that get absolutely no where on the matter with anyone who thinks disagreeing with this guy is a blight on humanity.

When a teacher thinks Asperger's is just an excuse for bad behavior, she inhibits that child's support system and injures him or her mentally and emotionally. This happens in places like Florida and Arkansas. My next example of making waves is Wendy Portillo, a school teacher in Port St Lucie, Florida. Also in 2008, she made headlines for having her kindergarten class students, stand up one by one, and vote young Alex Barton out of his class for "bad behavior". Each student was forced to say something negative about Alex before voting him out. I can only imagine the results on his psyche. Mrs. Portillo lost a year of work, but was given her job back with support of the community. Yes, dozens of parents, and over a hundred supporters, came forward to give some kind of testimony to the board that Wendy Portillo was awesome and should have her job back. Was it forgiveness or did all these people hate autism? Is that a sign of just how much autism education is needed? I think so. As it is, Wendy thanked all her followers by getting in trouble yet again in 2010 for mistreatment of a partially deaf student. I wonder if all the same people will come forward to dump on a deaf child's integrity too? Sorry, in any case, it goes to show just how much some actions can create shockwaves that damage our community world wide. All the students in Alex Barton's class were taught something very wrong and they attribute it to autism. The public demonstration shows the same line of thinking.

There is a dangerous ignorance out there and it can do a great amount of damage to treatment possibilities, public education, and public opinion of people with autism. It's why we must be vigilant in teaching the truths of autism to anyone who cares to learn. It's our children's world next. How will it treat them?

Wednesday, April 20, 2011

Autism Controversy: Vaccines

As promised I want to talk about the vaccine issue and autism. You can't talk about that issue without talking about Andrew Wakefield, so he's right at the heart of it.

Despite what one might think, Andrew Wakefield is not the end all source of lawsuits or complaints about reactions to vaccines. Those have been around for a long time. Every time a doctor's office administers a vaccine there's a healthy little speech given about the possibility of reactions. There are cases of judges finding in favor of the complainant family for vaccine damage. What happened with the reports of Andrew Wakefield, was an explosion of those complaints and massive increase in families refusing to vaccinate their children at all. It's also created another wide divide in the autism community to the point that it's not safe to have too much of an open opinion on the matter. I'm taking my chances just saying what I've said so far.

I don't really want to get into the whole argument on if Wakefield was right or wrong. Wakefield maintains himself as innocent while his own government says otherwise. I will say that you don't just lose your medical license without any corroborative evidence, but that's a lot of info to put here. Instead, try these links; Wikipedia, BBC News, Sunday Times, Science-Based Medicine, and if you google him it goes on and on and on. Wakefield has a near celebrity status that earned him a book deal and currently has about 4900 friends on his facebook page. Yes, I have him on my associations too, but not because I believe or disbelieve him, rather because Andrew Wakefield (one way or another) is part of autism.

I do believe that the reports put out did trigger a massive scare that caused the reported rise in Measles and quite possibly other diseases as well. Just so we're clear, measles (without vaccine)can be a FATAL disease. It can and will KILL. So the decision to avoid vaccines is not one to be taken lightly. Sadly, it has been taken all too lightly and an entire anti-vaccine movement with multiple fanatical splinter groups has been in full swing for a good couple years now. Why do I say fanatical? Because they don't want to stop at the measles vaccine, they want to abolish all of them.
How controversial are vaccines in general? Check out this LINK. And for another view check out the Skeptic's Dictionary, great article there.

In that article of the Skeptic's Dictionary, Robert Carroll notes that the AVM is at least "two-pronged". One side dismisses vaccines having any connection with reduction of disease. The other blames vaccines directly for disease or disorders (autism). The claims they use often come under fire as noted in Popular Science.

Now I did go searching for websites of AVM activists, but they are actually not easy to find with exception of Jenny McCarthy and Andrew Wakefield. Rather than mainstream magazine articles or websites, you find scattered blogs and some local groups. Many are on facebook or myspace and don't appear to operate too much in the public eye. That's not to say there isn't literature by AVM activists and books, they are named in the links I provided above.

So, autism, is it caused by vaccines? If autism is triggered by vaccine, and there is currently no accepted evidence that it is, but if it is... it's not responsible for all forms of autism. It can't be. Scientists are still struggling to find any definite cause of autism. The only solid factor found so far is that autism in some forms is hereditary. Even that is not a "cause" it's just a lasting continuity that bridges parent to child genetically. It doesn't say where it came from or why it's there in the first place. Are damages from vaccines possible? Sure they are. But note that risks are there with all medical procedures, even if minimal.

My kids are vaccinated as am I. I do not believe that caused my autism. I happen to know of older relatives in my family with Asperger's which is believed to be hereditary.

If you are trying to avoid autism or any other non-lethal condition by not vaccinating your children, you should weigh this carefully with the possibility of the consequences that can be lethal. Autism has not killed anyone. Measles, polio, and others that vaccines are made against have.

Instead of fighting over vaccines and possibly endangering lives, we should work on enriching lives and getting support for children who have autism.

Tuesday, April 12, 2011

Autism Controversy: The Cure

In this series of my blog articles I am going to talk about the most controversial points in autism. These are points that divide us and cause us to attack each other with abandon, especially on the internet. Not just the internet though, as it has gone as far as picketing and lawsuits. But what does all that really achieve?

People of the autistic society can be very dramatic and overly driven people. That's an important first point to understand. We suffer from tunnel vision when we set our sights on a topic and what we feel about that topic. We can be driven into a "let's get'em" mentality with our over developed sense of justice and what wrongs us personally. To that note, we are famous for over internalizing situations to a point that taking offense is all too easy. As a disclaimer, I'm not saying that every single person with autism is like this, but I am saying it's quite common. We are also very driven by our senses that have us off balance much of the time.

As you can see by the title, the first area of controversy that I'm going to discuss is the ever aggravating "cure". This one may be the biggest area of autism controversy every. It's incited huge divisions of our community to go against each other with as much mudslinging, malicious ads, picketing, and hate as any religion or politics could hope to show. Now I'm going to make a very general statement that both sides may not care for: This is wrong on all sides. Now I'll impart the reasons why.

1: There is no cure: We spend a lot of time getting very bent out of shape over something that doesn't exist. Whether it's because we "want" a cure as some do or because we don't want one forced on us. What this comes down to is the argument of even looking for a cure. Half of the community takes great internalized offense at this while the other is labeled as "curbies" (a hate term, people, think about it). All of it is fueled by fear and mistrust. The bottom line, however, is that a cure simply does not exist. As it is, I don't see one happening in our lifetime or maybe even ever at all. We need to stop internalizing the seeking of a cure as a threat and consider the people who are looking and the life stories of the people that want one. I would love to "cure" some of the issues that I deal with as an autistic person and don't believe I would be lost at all. Having my senses more leveled out would be nice so that the sun doesn't give me migraines and some sounds don't bring me to my knees, think about that. On the other side, those who want to cure "Autism" as they don't tell you what areas they are trying to cure, need to be more specific to help calm the waters here. Curing autism is not a threat, cannot be forced on anyone and as of now, doesn't even exist.

Like the Unicorn, just not real.

2: It's invasive: Both sides feel invaded by the other. Another point to think about carefully. Why do you think that is? Take a family with a 13 year old boy who cannot talk, dress himself, feed himself or otherwise care for himself at all. Put them at a "cure" rally and have a non-cure type approach and lecture them for trying to "cure" their son. That's wrong. First of all, no one has the right to condemn anyone or any family for their medical choices.

If you do this and don't know them personally, don't know what they are dealing with, don't know how they feel or what any of their struggles are, you are out of line. Same goes with anyone lecturing you that you should cure yourself. You simply don't have enough facts to make a judgment. Also, just because someone wants to "cure" themselves or a family member for what ever reason... it doesn't mean they want to cure everyone. Yes, it's folly for organizations to talk like they have acceptance of everyone when they don't, but that's the psychology of an organization for you. You're better off ignoring it.

Put those together and what you get is a colossal waste of time and energy for us all. What the autism community needs is more moral support and acceptance, not infighting that will ensure nothing gets done for anyone. As of me writing this article, our government is on the brink of a shutdown thanks to a room full of politicians with the exact same problem. Is that where we want to go?

So here is what we need to do;

1: Stop worrying about the scientists who aren't just looking for "cures" but trying to understand how it works for the sake of everyone (educational).

2: Stop fighting.

3: Remember that NO ONE can force you to take any cure and just because someone else wants their (very different form of...) autism to be "cured" or "adjusted", doesn't mean anything will be directed at you.

4: Allow other families the freedom to make their own choices for themselves without all the excess judgment. If you don't like their decisions, just leave them alone. That's no matter what "side" you are on.

5: Remember there is NO cure. All that can be treated or "cured" are the comorbid side issues that can come along with autism. As it is, how many of those are there? Go try and count them.. good luck. That's why autism as a whole cannot be cured. Many of them are seriously debilitating. Those are the real targets, not you.

Next time: Andrew Wakefield and Vaccines.

Thursday, April 7, 2011

Teaching autistic kids hygiene

It's really my own fault. Yes, there are some special conditions, but I can't blame anyone but myself for my problems with my teeth. Last weekend, I spent some time in the emergency room for extreme mouth pain to check for possibility of a dental abscess or infection. Man did it hurt. It felt like the entire side of my face wanted to break open. So, why didn't I go to a dentist? Well, that's a problem the entire state of Wisconsin is facing right now.

There are thousands of people on state care (Badgercare, Forward card, Medicaid, Medicare, etc.) here and only a handful of dentists who will take that insurance. When I moved here, I had some cavities to take care of. No problem, go to the dentist right? Wrong. The only dentists I could find that would consider my insurance was too far away for me to get to. The Dental collage? Two year waiting list when I called them. Now that I'm considered an "emergency" the surgeon can see me in a few WEEKS. Why? Because there aren't enough dentists who will do the job and accept the insurance. Currently, the standoff between the dentists and the insurance is a threat to my health and that of thousands of others. That is why I now have three broken teeth instead of cavities. Well, there is the point that I am about to make that could have kept me from worrying about any of this garbage.... I could have done a better job taking care of myself.

Especially in these times of idiotic greed from so called professionals who are supposed to represent our health and well being, our kids must learn the importance of their personal hygiene. To do this, I believe we need to understand what gets in the way of using that hygiene properly.

Our autistic children have a couple issues that get in their way. One is that they are very "bottom line" oriented and have a tendency to want to skip steps in things to get to the end result. They don't see a reason to put extra time into things and have to learn where it is important and why. Details matter. They can also suffer the attitude of "why bother, I'm only going to get them dirty again" and that requires use of another set of details. They don't understand that cavities happen over a long period of time. It has to be integrated as a matter of routine too. If it's not routine, it will get dropped. Then there's the matter of "stuck in a rut" where their special interest will overtake hygiene and other issues of actual life importance. A balance has to be planned out and practiced from early on.

Depression and other mental illnesses cloud judgment and can severely affect proper hygiene. Feelings of worthlessness or obsession with certain issues will literally crowd out even feeling the need to practice hygiene. "Why bother" becomes a major danger along with diminished feelings of self worth. If you feel like you are a worthless person you will treat yourself the same. I had a severe period of depression that lasted for several years and hurt me badly. It was also hard for loved ones to see. I'm glad I have my depression under wraps now, but I know how much damage it could do or could have done. Remember, at it's worst, depression can kill. That means any other damage along the way is simple for it.

What things help install those healthy habits?

Routine, routine, routine: Make it a required routine. Make it a requirement before doing two things; leaving the house for school or anything else and going to bed. No matter what you go to bed for, you must brush your teeth before you do. It's that simple. This practice can keep your teeth healthy for decades.

Teach negative consequences: But watch out for the "won't happen to me" attitude. An important consequence for our kids and especially our kids with autism, is social acceptance. Most of them want social acceptance desperately, they have to know right away that personal hygiene is of the utmost importance in having that. No one wants to be near anyone who stinks, for example. Bad breath and rotten teeth are turn offs too. Does he or she want to get along with the opposite sex? Then you must have good hygiene in all it's forms. It's a life lesson. Yes, many of these can turn into positive consequences as well and should be presented both ways.

Example: I know of a child who skips wiping his bottom after going to the bathroom (skipping steps for the end result). We can tell because he also skips flushing. As a matter of hygiene it's constantly reminded and explained. Does he want people to complain that he stinks (which will hurt his feelings)? Of course not. Then, he has to do all the steps and clean himself when he's done. I give him something to associate with, knowing he hates strong smells himself. I remind him how it feels when he comes across something that smells bad to him. If he smells like that to everyone else, what will happen? This is just one example of course, but hopefully you can see some techniques that will help you. It's more important with our health care problems now than ever before.

Another technique I've mentioned before is getting them involved, especially as teens who require more hygiene items than small children. Let them pick the things with scents that won't trigger them and are non-irritating to their skin. Remember, they still have to deal with their autism on top of becoming a teen.