Wednesday, May 26, 2010

Of Brain Scans, Therapy and the Right to Dream

I have to tell everyone that I generally stay away from too many controversial issues surrounding autism and its causes. I for one do not think vaccines caused my children’s autism. I did not need Wakefield being brought to task by the English General Medical Council or losing his medical license to know that. Knowing what I know now about autism I can sit back and look at old home movies starring collegeman and see everything that would have predicted his autism from early on in life. I know they say hindsight is twenty-twenty, but I think that the CDC's list of issues to watch for is so very important. Even collegeman’s pediatrician did not see it and she was a developmental specialist. Needless to say, knowledge of autism 20 years ago is not what it is today and I know for a fact that that doctor will never miss another autism diagnosis in her life ever again.

What I find so interesting to write about today, is some new research that was written up in the Wall Street Journal. There was a study done that showed how babies who were prone to autism used their brains differently than NT babies. The entire left side of an autistic child’s brain does not function. What the article goes on to discuss is how both sides of the brain are necessary to develop appropriately. That the left side is for dictionary understanding of words and the right side is for the accumulation of social understandings. Scientists are theorizing that when the left side shuts down then the right side takes over the dictionary understanding but cannot handle both jobs at the same time. Therefore, social acclimation gets lost.

The ability to read brain scans and understand how the autistic brain works and why it works the way it does is a leap in the right direction. The article also says that with this understanding that you can see the autistic brain almost from birth, it can then lead to earlier and earlier diagnosis which means future generations can get the help they need at an earlier age even than 2 or 3 years old. In fact the only reason that it may take until that time today, is that doctors need to see the symptoms of autism before they do anything about it. But if you can prescreen a child then there can be immediate help and understanding.

I liken it to amniocentesis. The idea behind that test is to prepare families for genetic abnormalities that the unborn child may face and to allow families to prepare for the eventuality of the needs of that child. Many people say that such a test has led to eugenics because most children, almost 95% of those with disabilities, are aborted by their parents. Many autism activitists are afraid that the same will happen to unborn autistics. While there is always that fear that society uses their medical knowledge for inappropriate causes, it cannot stop the research and development being done in the name of our children.

I remember a wonderful play called the Twilight of the Gold’s. It was about a young woman who through genetic testing found out that her unborn child had the propensity to be gay. The entire movie dealt with social stigma, ignorance and hatred. I think that it is a movie worth watching for it bespeaks many fears and realities that many communities face in our world, not just the autistic community. In fact in China and India where they can abort due to sex, there is a dearth of marriageable females.

But medical knowledge needs to keep moving ahead. I suppose one of the main reasons that I am so adamant that we get past the vaccine as cause issue is that the autism community as with any community has just so much money to allot to any research or idea. I believe that money would be better spent on looking for real causes, whether it’s genetic, environmental, and evolutionary or a combination of things that we have never even thought of.

I believe that we need to spend money and time, again a finite commodity, on preparing the world for the community of autistics that are going to be coming into adulthood over the next decade. While in the State in which I live there are programs for the severely disabled there is nothing for those that inhabit the twilight world of my boys. The Special Education Director at our highschool used to say that the boys were neither fish nor fowl. They are too high functioning for government help, other than what the school provided, but not without issues to function in the neurotypical world. So as we expand our support of the severely affected, society needs to gear itself for those that are coming of age, who are just slightly out of kilter, like my boys. Again where is all the money going to come from if we spend it on nonsensical research?

Yes I know that I said the neurodiversity is nonsense and I still believe it. This is a totally different topic. Helping those become members of society is not accepting that they can do anything they want because of a disability or that the disability entitles them to certain excuses that NTs cannot make. Also leveling the playing field is fairness, not an excuse. (You can reread those blogs here and here)

I find the new research exciting and I am so glad that it is finally taking off. I am glad to see that the scientific community has gone beyond a small group of persons who wanted to control an entire population and how that population and its causes are perceived. I am glad that there are reputable researchers out there who aren’t afraid to tell parents; yep it’s your genes that did this to your child. I personally accepted that fact decades ago. Now I want the scientific community to research their brains out and find out the real causes of autism, so if we can’t cure those alive today, we can possibly prevent autism in the future.

You bet I want a cure. Do I think its doable today? No I do not. Can a child get better with therapy, heck my own boys are living proof of that. There is a wonderful book by Elizabeth Moon, called the Speed of Dark. It’s about a magic pill that can cure autism and what happens when it is given to a subject. I have had many discussions with parents about whether you would give that pill or not to your children. My children would not take the pill. They are who they are and they like who they are. I am happy to hear that especially since such a pill does not exist and there is no such pill on the horizon. But if that pill did exist I would crush the damn pill up myself and put it in their favorite chocolate cake so they would ingest it without their knowledge.

Yes I hate autism. I hate it with every fiber of my being and I am not ashamed to say it. I think any person that says they love autism because it is a part of their child is fooling themselves. I akin it to cancer. If your child had a life robbing disease like cancer would you love it? It is a part of your child just as the autism is. For some reason parental guilt I think plays a large part in how people openly discuss these issues. Not wanting to seem like they don’t love their children, and that they are totally accepting of who their offspring are. I think they need to deal with reality a little better. I say I hate autism because I love my children. Autism robs them of who they were meant to be. It makes it overly hard for them when accomplishing any task or working towards a goal. Autism deprives them of the simplicity of life.

Don’t’ tell me they were meant to be autistic. Balderdash. I no more believe in that, than I believe you should give birth to a child with Tay-Sachs just to let them die a horrible death, because it is God’s will. We fight cancer, MS, lupus, cystic fibrosis, etc, so why is it a crime among the autistic community to say you hate autism and you want to eradicate it and fight it? Just because autism doesn’t mean you end up on a ventilator or dyeing in pain doesn’t mean it’s not painful on a day to day basis. Doesn’t mean it is not devastating in so many ways, educationally, emotionally and in a devestatingly human-way. It takes from our children their human right to be wholly connected and to feel a part of the world. They do feel as if they are on the outside looking in, no matter how much they do partake in society. There are some things that they will never get and that will forever be beyond them. Somethings are what they are as well and as empathetic as they are, and as funny as they are, and as typical as they could be a times, they will forever be autistic. For that alone, I hate autism.

Or maybe it has to do with the fact that when collegeman was 9 years old, the only thing he ever wanted to do was serve his country. He wanted so very badly to go to West Point and become a military officer. He loves his country so much that he truly believed and still believes in honor, duty, country. But how do you tell a child that because of their disability, because of their differences, that their country does not want them? Because that is it in a nutshell isn’t it?

Now I understand the medical issues, I am no fool. I understand that he cannot be relied upon with seizures and the need to take medication to focus. He cannot protect his fellow soldiers in a fire fight if he hasn’t taken his medication. So I am not saying that the military is wrong, I am saying I had to find a way to teach my son how he could serve his country without telling him his country does not want him. So we settled on pushing him into a legal career so he can protect the victims of crimes and help those unfairly charged and convicted of crimes as well. Yes, collegeman wants to have a hand in changing and saving the world.

You see it is different when you have a child that may not get into West Point or Annapolis because they didn’t work hard enough in school or was laxidasical about what they needed to do in order to prove themselves worthy of attending a military academy. It is totally different when the reason your child can’t attend is through no fault of their own, but only the luck of the genetic draw. So on top of everything else we have to deal with in helping our children learn to function with their autism throughout their life, we have to deal with the fact that our children need to remember that even if their dreams are changed because of their autism, that they can and have a right to still dream.