Autism gaining some well earned respect

As a single father of two children that fall into the Autism Spectrum I have first hand knowledge of dealing with all that comes with this troubling disorder. The mental anguish and the battles with government agencies that I believed would help. I mostly received nothing more than looks as if I was talking about something unknown or not understood. Little did I know at the time that I was. I banged the drums loudly as I sought answers that were not coming. I then looked on the internet and found that I was far from alone.

When I would confront my children’s teachers who were specialists in dealing with children who fall into special education I was stunned at what I found. The vast majority had no clue about what was at hand for me or themselves as this epidemic was just beginning to gain strength. I was even chastised for not being a good parent as my youngest son was accused of just not listening. “Your son just sits there and stares; He looks right at me and then refuses to do his work.” I tried to explain what I had learned from the private Autism organizations that had sprung up and was laughed at.

I became an advocate and fought an uphill battle that was all time consuming and along with my son’s needs I would become broken down as my family and friends failed to understand the enormity of it all. This was at a time when the word Autism meant severe as different levels of this disorder were not seen as they are today. The horror stories that I would read about were similar to ours. Families in distress and nobody would listen except the others that were experiencing the same problems.

Today there is more hope then ever before and it has taken those that are in high places to become involved out of necessity as they too have children that suffer. As with anything in modern society it takes money to prompt action. As with AIDS before, it wasn’t until Magic Johnson of NBA fame became inflicted did AIDS research gain the dollars needed that has helped save millions and the stigma was lifted.

There has been so much controversy with Autism as to causes and treatments that it has been allowed to reach this point. For sometime now there have been many that have been pointing fingers as to the possible causes and yet this all fell on deaf ears. Just as with the knowledge that we were witnessing an epidemic did. It took government 7 years to find out what has been known by parents. Many of us parents that were ridiculed were right and yet nothing was done. Even money for research is largely funded by parents as government still ignores the obvious.

We have watched as congressional hearings were held and nothing came of them as the CDC just answered in political terms. Question: Is there a correlation between the vaccine additive Thimerosal and Autism? Answer: The CDC believes that children should not be exposed to mercury. We watched as the CDC paid for a study then held meetings about it then changed the study to remove the answer. It is like asking if the earth is round and being told that the earth is not a square.

Now we see that the Institutes of Medicine (IOM) is holding a workshop April 18th and 19th of 2007 titled Autism and the environment challenges and opportunities for research. Kind of late when the questioned has been on the table for over 10 years. How many more children and their families have joined the ranks since? And when you consider that this is just the beginning how many more will be added? Our government needs to move this issue along as a priority as it is more than Autism numbers that are climbing. Not only are families being dealt blows but the economy is showing strain from the ever increasing healthcare costs. 80% of healthcare costs are related to chronic illness and in the majority of cases Autism treatments are not even covered. So children do without in families that lack the resources to pay for them. And in the long run these costs will not go away. The largest increases in the costs of education are again this area as schools are forced to deal with the ever increasing numbers of those that require special education.

The reasons behind Autism and the majority of the chronic illnesses of today will be found to be from environmental exposures that we are experiencing at higher rates than ever before. It is the only answer that explains the increases and the distribution of cases. So while we research causes we needed to look into cures as there are cases of success despite the government’s unwillingness to acknowledge them. The need for treatments that show promise must be funded as good health is a right for all not just those that can afford it. In the long run everyone benefits.

I do want to make a note here as I am trying to inform others about what is being learned and “I just wish that those in government would stop just staring at the parents and organizations that have done most of the work for it. You are looking right at us and refusing to do the right thing.”

I must also applaud Autism Speaks for the work in awareness that they are doing as the April 9th concert featuring Bill Cosby and Toni Braxton should increase knowledge of what many of us have known for years. Finding high profile celebrities should make it easier for the issues to become known. There are many that have been involved in this fight for years such as the late Dr. Rimlan who devoted his life to the cause. All of the parents that have worked on this issue should also take solace and keep up the work that they have been doing. We need to continue the push as our children’s futures depend on it. I just hope that it will not all be in vain as only time will tell.