The Congressional Hearing on Autism
How useless was it?
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. Lastly and 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. They 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
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@RaisingAspergersKids –
Well, in general autism is kind of an outdated diagnosis, and people with a whole range of problems kind of get rolled into the spectrum when really, I think there are a whole range or disorders that need to be distinguished from one another-but being that I am a social worker and not a psychiatrist, I guess my main concern was that more people would be able to get financial help when seeking treatment etc-and really no need to thank me-I think what I do helps me more than anything I do helps anyone lol.
@IdioticWisdoms@xanga – there is alot of controversy about the DSm5 changes especially when it comes to rolling the aspergers dx into the broader autism spectrum disorder. But I happen to agree with you. I think it may help people get services and support. In my experience, which is just dealing with schools, many children with aspergers are denied services because the schools claim that their issues do not come under autism services. I hope the same goes for social services, medicaid and disability SSI too. Thank you for all that you do helping the most needy in our society.
I work in the social services, and I work for an agency that at the moment works solely off medicaid cases for troubled, developmentally delayed and mentally ill children. I was always shocked at the very small number of children on the spectrum that qualified for medicaid. At the moment, (at least in NJ, I’m not sure if this is the case nationwide) but currently the Diagnostic and Statistical Manual of Mental Disorders is from about 18 years ago, DSM IV. FINALLY it is about to be updated to DSM V in the first half of 2013, and this will drastically change the benefits that many people on the spectrum will qualify for. We have already been taking many classes and have been prepared to start dealing with a lot more children on the spectrum, as they will be more likely to qualify for government aid for in home and clinical services. Anyway it probably should have happened sooner, but progress is progress and hopefully it’s a step in the right direction!
@RaisingAspergersKids – Here we are somewhat in agreement. I often believe that God does not give a damn, but as I can never be absolutely certain, I abstain from the assertion.
You never said you wanted to stop searching for preventatives and cures? Well, if that is the case, I must have mistaken the tone and intent of your original post. In any case, again, I agree, we should balance our approach to tackling this epidemic. We need to be responsible for and to the children we have and part of that responsibility is to make sure the community we are serving is no more swollen than it has to be.
Furthermore, I think it’s a mistake to view competing interests as the enemy. If we are to base our alliances on a scarcity of funds, we may as well throw cancer and HIV patients under the bus, too. After all, at the last I’d heard, cancer and AIDS both received far more research dollars than autism, though it’s possible that has changed in the last few years.
Perhaps we are not all on the same team. We should be.
@distractedbyzombies@xanga – I never said that i want to stop searching for preventions or cures. I said its been the same thing over and over again for decades, never moving always the same ideas circling back. I have nothing against looking for a cure either but it needs to be balanced with reality and what has to be done to help those in the here and now.
A far as the deity of my choice, and you being cheeky plus ca change plus ca la memechose. Don’t need blessings, and don’t care about curses. For that you would have to believe that God gives a damn in the first place, which I do not.
In case it isn’t clear, that last part is meant to be cheeky.
@RaisingAspergersKids – That assessment sounds perfectly reasonable. As does my mirror assessment of you. Unfortunately, none of it is constructive. If you don’t believe that there is a constructive dialogue to be had within the autism community, I don’t know what else can be said. I suppose that is why diametrically opposed forces/viewpoints clash so violently. I will continue to hope for any kind of help that my child can receive, whether it be curative, therapeutic, societal, or whatever. As for your stated goal to stop the search for autism preventatives and cures, I hope that you utterly fail in your agenda. May the deity of your choice have mercy on your soul.
@distractedbyzombies@xanga – I suppose being that I have been at the advocacy thing for 20 years i never came across a family of profoundly disabled children? Seriously. Do you think that there was never any attempt at outreach and cooperation? Did it ever dawn on you that perhaps it is those with profoundly disabled children that refused to have anything to do with us, because my children were not disabled enough? or because my children were “less” disabled it was fine to shun them, pick on them and disabuse them?
Having been at this “autism” advocacy rollercoaster for some time now, I can tell you that there is no koombayah in this community. Lines have been drawn. Sad but true. It includes denigration, attacks and even attempts to destroy people’s names and reputations. So yes I have had enough. If I do not like how something is presented it is my right. Also it is my right to not think well of people who waste the few precious resources that the autism community is allotted to pursue an agenda that I find harmful, hurtful and in the end destructive of my children’s future.
@Jonsmom01 – Sorry, no, no apology. Language is important and it is language that is used to present your case before Congress.. It is how you discuss an issue that portends how that issue will be dealt with. Holierthanthou..well thats your opinion and as far as I can see something you need to deal with.
I like the advocates from GRASP and ASAN agree. The talk at the conference was denigrating to those on the autism spectrum. By the way I am fully aware of the issues surrounding those with profoundly disabled children. I have been an advocate for over ten years, a support group moderator and an advocate for my own children for over 20 years. I have many friends and associates with children who will never be independent, verbal or physically functional and who need to rely on government help to lead their lives. I didn’t just come to this discussion at the congressional hearing.
My complaint, as I even mentioned above to another commentor, is that when the issues are sidetracked, the little bit of money that is allotted to autism is misplaced and misused. Instead of productive research we run around in circles. In stead of helping those who need the most help providing families with the financial support they need so that their children can have therapy, housing and education, we waste it on these same useless circles.
No one ever told you to not tell it like it is and give a realistic portrayal of the life your child leads. This is why the language used is important and the wrong presentations are harmful. It distracts. It prevaricates. It condescends. it is never so much what you say as how you say it. The language should not say, our children are “defective’ help them. It should be our children are different but no no less human and entitled to respect, honor and dignity as anyone else in society..so what will do to help them? In many ways the same thing, but the tome and tenor makes all the difference.
That is why, in my opinion and of course its my opinion, this hearing was useless. I don’t think it gave Congress anything to think about.I think the language used gave Congress an out to do nothing. I think they will just go back to their offices and pat themselves on the back and tell themselves how terrific they are because they held this hearing. They will allocate some monies to research to appease a segment of the population and that is it.
@RaisingAspergerKids – You were the one that first attacked those parents in the audience and those that do not hold your holierthanthou view and we are abusing our kids by having a realistic view of their disability. I finally watched the entire hearing. I disagree with you that it was not productive. I think it gives congress a lot to think about it and it remains do be seen of course what they will do with the info. I feel that this disagreement between you and I is primarily due to the broad spectrum of autism. You and the panelists that were primarily speaking for the high functioning side of things are telling us on the low funtioning side that we are abusing our kids by viewing their disability as bad and with out hope. I am not sure where you got the idea that parents like me and the parents in that audience do not have hope, or that they are not doing everything in their power to help their kids. Or that they are abusing their kids because of that attitude. It is NOT a “woe is me” attitude to tell it like it is. My point was that despite doing everything we can possibly do – spend more money than we make to help my child he does not have much in the way of a future as defined by you and the others on that panel that deal with high functioning autism. It is simply not true for him or us. Yes he will be able to still improve in his skills and hopefully will be more independent than he is now – BUT it is realistic on my part to know his limitations and plan for them. And what about parents that do not have the money that we and you have to spend. They are faced with impossible waiting lists, lack of providers in some areas and lack of funding available all provide for a very bleak future for highfunctioning as well as low functioning individuals if their parents do not have the money as we were blessed with. So are people who do not have the resources wrong for feeling like there is no hope? Of course not you and all of us in the autism community should be understanding and reach out to them not attack them for feelling hopeless. “Telling it like it is” is the only way people will understand what life is like for families like ours. Attacking us for doing so is wrong and narrow minded to the nth degree. I am not attacking you for advocating for and making the best possible life for you child. Why do you feel justified to attack parents like myself. Your attack on parents for not having hope is worse than imaginable because at the very least you should have some understanding of what we go through and the lengths we are going to to help our children. We do deserve your apology.
@RaisingAspergersKids – Forgive me. I forgot you had the patent on reality.
I could turn everything you said back on you, btw. I am, after all, the parent of a child who is profoundly handicapped by autism. I won’t, though. I will only point out that all of this comes down to a difference of opinion. Unfortunately, intense dislike is far more poisonous to the spirit of cooperation and progress than any other complaint you could conjure up. Instead of condemning people, perhaps you could try to bridge the gap and teach them? Or not, for you are right, you are allowed to say whatever you want and do whatever you want, within legal constraints, just as I am free to say and do whatever I wish. Have a good one.
@distractedbyzombies@xanga – And I am entitled to disagree with them and present my opinion of them as I see fit. I see them as harming my children and the future they are entitled to have by asking the government to waste its few resources on nonsense. I see them as harming the needed real science and investigations into autism and support that my children need. I am tired that these parents need to say that their child’s autism came from somewhere other than their genetic code. Ignoring the reality hurts my children and i am allowed to be disgusted by this philosophy and these parents.You think its arrogant and hateful to stand up for my children too bad. Having been at this for 20 years I am tired of baloney and crap in autism research. I want the real deal, real support and real societal action. Not some feel good bullshit. So yeah i dislike these parents intensely. They take from children and what they really need.
As far as you being 6 you sound alot younger actually.
@RaisingAspergersKids – The differences of opinion came from the participants in the conference and the parents who disagree with your proclamations. As for my opinion, I did present one: your diatribe was arrogant and full of hate. If you wish to reach people instead of merely trolling, you might want to skip the attacks and stick to facts.
As for my age, I am only six. Quite precocious for my age, don’t you think?
@distractedbyzombies@xanga – You didn’t give a difference of opinion, you were derisive and insulting. You got what you deserved. Stop whining you sound like a small child.
@RaisingAspergersKids – Yes, shame on me and my consulted sense of importance. Only you are truly important, for only you possess the answers to the autism conundrum and, furthermore, all of life’s difficult questions. We humbly beg your forgiveness for any and all differences of opinion, O Holy One.
@distractedbyzombies@xanga – Shame on you and your consulted sense of importance. It’s not hateful to point out nonsense and a huge waster of time. It is not hateful to point out uselessness and stupidity especially where are children are concerned. it’s not hateful to point out that there are parents who are their childrens own worst enemies. Its not hateful to discuss and support what was said at the meetings by autism advocates. That you can’t handle the facts does not make them any less factual Denigration of those with autism is abusive. In fact if you wanted to really fight for the rights of the disabled it should insult your sensibilities that people feel that those on the spectrum are less than others in our society. As I wrote I agree with the advocates from GRASP and ASAN the tenor of the hearing was insulting to autistic people.
Thank you for lacing what could have been a helpful article with hateful tripe. Shame on you, shame on autisable.
@Jonsmom01 – Now that I have even thought more about what you wrote…Your woe is me attitude is very annoying and nonproductive. As an advocate for over twenty years,I have seen parents with your attitude more times than not. Your child’s autism is not about you, stop making it out to be that way. You may not look for a cure but the people at that hearing certain did, it was talked about ad infinitum. By the way the person who is owed an apology quite frankly is your child from you for your negative, unproductive, non-helpful attitude. I don’t apologize for the truth.
@Jonsmom01 – First of all I too spent 100s of thousands of dollars (including closing out IRAs, education funds and every other financial avenue open to us) and have a huge second mortgage on my home to help my children with every kind of therapies, special education, tutors,and investigating every knew idea that comes down the pike, including hiring and paying for a TA to accompany my children to their college classes for social and emotional support. By the way, self-abuse is something we are all too quite familiar with in our house as well. it is not something simply characteristic of sever autism. Whether they will be self sufficient is not knowable and is something we are hoping for. Yes, my children have a higher possibility than anyone with sever autism to lead an independent life but nothing is guaranteed and all you can do is work for the day in the hopes that it will come. Obviously you have no idea how debilitating aspergers happens to be either. Believe me it is no panacea. It is not an easy cake walk and believe you me it does not alleviate my nightmares either.
Second, when you are saying your child is less than, and denigrate who they happen to be, you take from them their humanity and it is abusive. As I said though, to say you hate autism, which I have done on my own, is not the same thing. But to act as if your child is defective is terrible. Your child can have a life. So it is not a typical life, but that does not mean he cannot have a productive happy existence. I know many people whose children are in programs for adults with sever autism who lead happy, productive lives. But it was the parents who made it happen. they did not give up and they did not think that their children’s lives were worth less because they needed support and supervision for the rest of their lives. They decided that their developmental issues notwithstanding their child was entitled to be happy, productive and fulfilled human beings. It is up to you to make it happen. However, if all you have is negative feelings to the end result that is all he will experience. If you do not think they can pick up on your emotions, your words and your actions than you are wrong.
The representatives from GRASP and ASAN were not wrong on this issue.
oops I meant 100s of thousands of dollars not 100,000s of thousands of dollars
While I can agree with some of what you said I have to give you your comeuppance on your ignorance of severe autism. Just because your boys have aspergers and through your help and advocacy are in college and they are thriving does not mean that you can condemn others for giving up hope and not doing what they can for their children —actually saying they are abusing their children!! Come on give us a little respect. We have spent 100,000s of thousands of dollars both on specialized education with the best autism ABA education according to the research, and Bio med interventions. Our son made progress- we got his self injury down from uncountable to occasional. He can now communicate his basic wants and needs through sign language. We are trying the ipad with Proloquo2go, but with minimal results.He made strides in other skills towards independence but he is NEVER going to be independent in the sense that your boys will be. He will always live with us or have to be under care 24/7. He will likely never be able to hold a real job but will have to have one created for him if we are lucky. I know others that have spent the same kinds of money and searched everywhere for help — not for a cure, we know better than that, but for hope that their children would progress to having some kind of future beyond the walls of their autism. How dare you suggest otherwise. We want your apology but I expect we will not get it.