Friday, January 27, 2012

DSM V: A real look

Lately the internet is a buzz with all sorts of chaos about the proposals for the new DSM (V) set for 2013. Petitions are flying, people are screaming and panicking...... STOP. Please stop. And please read this through so I can help you better understand. Your benefits, diagnosis, treatments, supports and what ever else are not being taken away. You are not going to lose your identity or anything else. Lets walk through it, shall we?

Primary complaint is that they are removing Asperger's and Rhett's syndrome from diagnosis in the DSM V. But hold on, that already happened. Yes, it already happened. DSM IV lists the new compound definition as Autistic Disorder. Read it HERE. Click on the tab that says DSM IV and read it.

What does this mean? It means that you either have autism or you don't, period. If you were diagnosed with Asperger's, then you have autism. If you were diagnosed with Rhett's, you have autism. It is not intended to take anyone's diagnosis away. It doesn't change your diagnosis except for the sake of a word.

Why did they do this? The biggest reason is that autism is already really hard to tie down in a category like when they had five forms listed before. It was hard to diagnose and still is. Having all the varied categories actually created more confusion than they were worth. Consider this:

Right now there are still several states where insurance will not cover treatments for "Asperger's" but they will for "Autism". Think about it. The new definition in the DSM means you are actually more likely to get the treatments and support you need because of insurance companies needs for specific terminologies.

Here is a quote from that same link under the tab of "rationale":

Because autism is defined by a common set of behaviors, it is best represented as a single diagnostic category that is adapted to the individual’s clinical presentation by inclusion of clinical specifiers (e.g., severity, verbal abilities and others) and associated features (e.g., known genetic disorders, epilepsy, intellectual disability and others.) A single spectrum disorder is a better reflection of the state of knowledge about pathology and clinical presentation; previously, the criteria were equivalent to trying to “cleave meatloaf at the joints”.

Be sure to read the tab for the DSM V. You will notice that nowhere does it say that you are not autistic if you were previously diagnosed under one of the five previous forms of autism. All that is happening is a change of terminology, nothing else. 

Asperger's and Rhett's have not ceased to exist, they are simply consider as "Autism". That is all. I hope that people can calm themselves soon and see this before they cause themselves a lot of unnecessary stress. 

Tuesday, January 24, 2012

Learning auto immune diseases

This new journey I've been on has given me a lot of reason to research and learn. I have gained a whole new insight to auto-immune diseases and what they do.

An auto-immune disease is a condition where your immune system starts to attack your organs or nervous system in various ways. Like with Autism, there is a wide spectrum of these conditions and they can be very hard to pin down and diagnose. This causes a lot of stress between doctors and patients. Some patients complain that doctors think it's all imagination.

Thanks to two MRI's we know this isn't my imagination, but that's the only comfort we have. Blood tests and a lumbar puncture haven't proven helpful. My research has shown me that it can take years for them to show up there depending on which one I'm dealing with.

I recently learned that some people with auto-immune disorders have to watch out for the common cold. I had thought this was only a problem for immune-suppressed conditions, but I've learned differently.

First, when your immune system is attacking all your organs, it compromises itself and ability to handle real threats. Now, this isn't a problem for me in that way. Instead I learned something else. A cold can still take me out.

I have a very strong and over-reacting immune system. Imagine someone driving a nail with a wrecking ball. Sure, nail goes but so does the building. That's my immune system. Imagine how much energy that drains out of you. Recently our household was down with the flu. Both wife and child had their upchuck moments but not me.  I barely have a cough, but I lost all energy and couldn't get anything done. I was down for a whole day.

So, having a super strong immune system can work against you. I'm still trying to learn what all I can do to keep myself going. Looks like more trial and error.