Friday, November 30, 2012

How Useless Was the Congressional Hearing on Autism?

Answer: A huge huge waste of time. All I saw was grand standing by uneducated Congresspersons trying to act as if they had all this knowledge about autism. I am certain all they were doing was using questions that some of their staff had prepared for the panels. Whether their staff was hand fed the questions by some constituents with their own agendas, or they read a few articles on the subject so lo and behold they were now autism experts, you truly couldn't tell the difference. Yes I know how it works on Capital Hill, been there done that.

I have to tell you though, what annoyed me the most, was that they kept asking the same questions over and over again. I truly thought we had gotten past the disproved theory that vaccines caused autism. I truly thought we had gotten past the debunked mercury-thimerisol-autism link. I don't understand parents who simply cannot deal with the fact that they genetically passed their child's autism on to their offspring. It is sad that so many are so willing to latch onto conspiracy theories. These theories get in the way of real research and real studies that could be used to help and support our children. And I am disgusted by those whose entire income is based upon leeching off of parents' fears and otherworldly hopes.

I also was annoyed by the Congresspersons who had to point out how the CDC doctors were making parents cry in the audience. The doctors weren't saying what the parents wanted to hear that was all. The doctors weren't blaming big bad pharma and some secret cabal somewhere trying to keep autistic children from becoming healthy. Yes the doctors were clinical in their approach. They are research scientists, not tinkerbell or the toothfairy. I truly don't know what the parents thought was going to happen at the hearing. Did they think that out of some magic box the doctors were going to pullout the cause and "cure' for autism?

I have to say one of the stupidest things I heard was from the representative of Safeminds. He actually had the nerve to hold up a medical book from 1930s and say they don't mention autism therefore autism didn't exist back then. He actually said that autism is something new. Never before seen in human history before modern medicine's vaccines/mercury/thimerisol use. What was worse is that no one called him on it.

Simply because there was no name for a disability in a medical book from an era so backwards that the world had not even discovered antibiotics at the time, does not mean the disability did not exist. That there just was not a name for it never seemed to cross anyone's mind, or quite frankly people could have been diagnosed as mentally retarded, psychotic, schizophrenic, or whatever they called issues they had no understanding about at that time period. They used to think that illness was caused by an unbalance of humors in the body too, should we have stopped thinking and discovering at that time period as well? Luckily the advocate from GRASP did touch on the definition of autism in the DSM4 as one of the reason for the expansion of the number of diagnosis.

I honestly found the panelists useless, except for the persons from GRASP and ASAN.  Both of whom are on the spectrum themselves. Nobody but these two representatives actually talked about what needed to be done for persons on the spectrum, especially those that age out of the public school system.

I wasn't impressed with the AIM program. I know its won numerous awards and is seen as the premier aspergers college support program. But to think that only "professionals" can accomplish these goals is false. The truth is that what the AIM program does for those on the spectrum is what I created for the boys on my own. The issue is finding the right school and the right people to work with your children. The idea that your child has to be handed off to someone else at the age of 18 is beyond me. These are not typical young people. They do not necessarily follow a typical path for education either.

REMEMBER you know your child best. REMEMBER you know your child better than any "professional" ever will. REMEMBER you will never throw your hands up and say your child cannot be helped.  REMEMBER you will never say your child can't. REMEMBER never let yourself be bullied by the professionals.

Anyway here are some of the issues mentioned by the panelists that I found important:

1. The ability to travel with your medicaid and SSI. The fact that these programs are monitored by states means that if you move states you need to reapply for benefits all over again. They mentioned how this was left out of Obamacare. This unfortunately is the biggest issue I have with Obamacare. Not simply that you cannot carry your medicaid and SSI with you, but that you cannot carry your health insurance from state to state no matter who you are. The ability to open up the state borders to insurance traveling, allowing for competition, would create a true supply and demand market for health insurance.

2. Lack of adult programs, housing, support systems, therapies etc. Of course there is no answer provided. Just a recognition that these issues exist and that as the autistic population ages, these issues are going to come as a tsunami on society.

3. The lack of vocational and work related training. Knowing how to navigate office politics and social system is very important. As one of the panelists said, it is much better to invest in the training and create viable taxpayer members of society then to ignore the issue and allow human capital to go to waste.

4. In many ways the most important, is the attitude that many in the audience exhibited. And yes the GRASP advocate  called them out on it too.  To continually talk about a "cure" or that your child is defective is abusive. You don't have to like autism. You can hate autism. I am no stranger to that feeling. But to continually make it out that your child is defective and without hope because of their disability is revolting. To continually act as if your child has not future and no worthwhile existence because of their autism is child-abuse. If a child has no future its not because of a disability/difference. Its because you as the parent have given up and allowed them to have no hope. If your child has no future, its your fault as the parent. This comeuppance was one of the best moments of the hearing.

5. The advocates did mention the financial burden on families. Which is good. But I don't think the committee understands it. Unless you live in the autism or special needs community there is no way anyone truly understands the financial trauma that we all go through every single day. Either we need money for a therapy. We try to get money for a therapy or a doctor. We research therapies and the costs. We try to figure out how to give all our children everything they are entitled to and try to figure out what aspect of normalcy we can bring into all our children's childhood as well. We figure out what we can do without to give our children what they need. As they age we also sit and look at our debt trying to figure out how we are going to pay it all off, save for their future (education and special needs trust) and maybe fantasize about retiring...oh yeah that retirement plan was gone along time ago.

So what was the reaction of the Congressional committee. Some verbal pats on the back and some virtual high-fives. But nope, no promise of support, help or of course money. The congresspersons congratulated the work and spirit of the advocates. They told them they were the future and that their passion is so important. That's all.....

Whoop-ti-do. As I have always told people. Do not rely on the government. Do not rely on anyone but yourselves to get the necessary work done. Figure out what your child needs and find a way to get it. Find a school that will help. Find therapists that get your child. Find psychiatrists/psychologists who are on the same page with you. Don't be afraid to demand excellence from those that work with your child. Remember if you don't ask you are not going to get.....

Also, find a local merchant who will let your child work for nothing, so they can learn how to function in the work place. Find a charity that will let your child volunteer so they can learn some office skills. If you can't afford a job-coach, or even social skills therapists, do it yourself. Help your child to learn the next step in life.

I know that this hearing was also about those with autism. Understanding who are children happen to be and how to help them. The family and caregiver was not in the picture.  But we are always there, hidden in the background. I know at this point in life, I was supposed to have two boys away at school and have my days all to myself. I was supposed to rejoin the work force and create the second half of my life. Well its not to be, at least right now. When will it happen? Someone day I guess. But then again who really knows. The boys still need me too much and I need to help them interact, advocate and fix the issues in their day to day lives. I need to still coordinate their therapies and work with the doctors. Emergencies appear out of no where and glitches always fill the horizon. I console myself with the thought that Grandma Moses didn't start painting until the age of 80....

So no, I don't think the congressional hearing accomplished anything. I heard nothing new. I heard nothing I didn't already know.  All I heard was that, yep, its all in my hands and I am all my children have. Like I said nothing new and nothing I didn't already know.



Elise