Sunday, April 29, 2012

What Makes It Harder To Be Disabled - Media & Money

Ready to get mad with me? Read this article on Autism. I'll wait while you read. The comments are worth a look as well. 

***Sips tea, counts to 500, sips more tea*** Back now?

So what did you think? Do articles like that help or hurt the cause, the people who care give, or the people with the disability?

If you didn't read it, I'll summarize the New York Post article in my own words. (beware of my own side comments because I was just sooooooo pleased with what it said)

~~ Autism is a fad. We want to label everything we don't understand or find bothersome in a false sense of control. Just yesterday, Autism was like really rare and now everyone has it... and more than everyone in Korea has it.

Parents are freaking out and buying into quack doctors and conspiracy theories. They are even refusing to give their kids the life saving shots the government demands all kids to have in their best interests. They are also blaming silly things like environmental toxins for the strange but false rise in numbers.

They article writer seems to think, though doesn't provide any references, that the rise in numbers is mostly due to over diagnosing. It can also be explained by 1. people stare less when an autistic kid is in full meltdown in the video isle of Kmart. 2. The label is now a spectrum to include milder cases 3. Doctors and special education folks know more about it and are using it to cover their backsides more. 4. Aspergers really made the numbers jump when the DSM was changed... 16 years ago. 5. And MOST IMPORTANT is that parents want special education services for their kids because they will be secluded in smaller class sizes and get more attention.

Behavior problems that look like autism, act like autism, and restrict like autism deserve attention but aren't autism. As many as half of the labeled kids are mislabeled if we looked really close. BUT those mislabeled issues still need to be fixed, don't get them wrong, as they are a cry for help.

The Internet and advocacy folks have made awareness higher causing 4 good things and 2 bad.  We'll do this as a game and let you figure out what they think is good: missed cases found, over diagnosis, more and improved care and education, cured cases that were never autistic to begin with, reduced pointing in restaurants, and increased research.

Science isn't being used to research the true numbers in the general population. Autism isn't a neurological disorder or a developmental issue but a psychological one. Glad they had their facts straight, aren't we?

This lovely bit of B.S. was brought to you by one of the over educated, under lived people who rewrote the DSM IV to tighten the classification of Autism, while not leaving a diagnosis for those people and children that would fall off the new autism that isn't a spectrum. ~~

How Ya feelin'? Need a minute? I'll wait. ***sips tea***

Now go read this article about a full range of issues that face a woman trying to get help for her illness. She has faced misdiagnosis, money issues, lack of available services and testing, disbelief in the illness being "real," the ever famous diagnosis of depression (been there myself which is just depressing), and it all comes down to money (and lack of it.)

Media: The media does what it wants to get it's own agenda passed. Sometimes it is to sell a story to the public in a bigger better way then the other folks. Sometimes they lie, I mean bend the truth, to sell the story to suit their own leans. And other times they are catering to a certain cause or purpose. And sometimes they are bought.

It's their right to report as they see it but the real problem is that people read or watch it and take it at face value. My mother in law reading the above mentioned article wouldn't weigh what she knows of my children against the "facts" in the article. She would just take the world of the writer because it supports her own narrow knowledge and views. She would, in fact, love the article. There isn't a ready made checks and balance of the facts, so misinformation just leads to increased intolerance and false knowledge.

The media is encouraging people to be mislead, misinformed, and in some cases down right wrong in their facts.

Here is another autism article that is about the proposed changes to the DSM-5 that will be released in May. I won't summarize it (I know you were so looking forward to it) But I will tell you why it is better. The writer says this is what is, this is what changes are coming, here is my sources, these are my thoughts and why. There are not any major false groupings but are traceable facts to support what she is saying. Yes, idiot people could still take her just at her word but she gives a thinking person the tools to see why she is to be trusted or not. And it is balanced for the most part.

Money: Good stuff first:  Here is a link to some resources that may help special needs caregivers get an iPad for their patient. No guarantees and remember there is a lot of need but not so much resources available.

I have several issues with things tied to both money and health care (and well being of patients). I don't think prices on medication, services, or supplies related to health care and the quality of life for a patient, should be so high as to be unattainable. I don't think Doctors should (have to) rule out or in something just to get the needed coverage. I think charities that ask for money should be helping the everyday, average patient on a noticeable level. I don't think it should be so hard for the average family to get the things their loved one needs. Most families have no idea were to start and how to stand up for the items they need.

There is more but I see that my tea is empty.

I really don't have a point other than that you should think before taking the media as truth and that we really need to rethink how we treat our young disabled folks. If they are denied the help they need, they will always need help. And seperate "BIG" business from "good" health care.

Now for fun go read this article and watch the videos. Trust me the article is well written and the story worth a smile... and the videos will make you laugh.

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