Combating Autism Bill Squashed by Rep. Joe Barton of Texas

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This has been an eye opening day. I still stand firm that the Combating Autism Bill would at the very least provide financial help for me and my son. I understand your frustration with people trying to make you "conform" to some sort of normalcy --- I understand, as I live it with Jack, but at least as far as straight up autism goes --- the intense therapy has helped Jack, but came with a huge cost.... I'd like to see families of autistic children get the help they need. My son Seth has Cerebral Palsey, and he gets all kinds of attention and people go out of their way to HELP him, yet Jack is markedly the more "needy" of the two and he gets looked at like a creep - uncontrolled child. I'd like awareness of this disability to get out there, and with that some sort of acceptance. Wishful thinking? That's ok -- I'm never going to give up on Jack - and those that cannot speak for themselves. Thanks for your insight.

I think it would be good for you to look around at the parent section too (if you haven't allready). There are parents who consider themselves NT (neurotypical) and those parents who are on the spectrum also. It is a reflection of society that those whose perceptions are different (like those with autism, or mental illness or MR) are treated differently. For some reason there is a disconnect in thinking that if an older person gets dementia (like alzheimers) they are still OK but if a younger person exhibits what is considered unusual behavior than they are to be shunned or something. So that I think influences parents to think that their first priority is to try and get their kids to conform in order to make them look more socially acceptable so that they will not be shunned. You can help him - when your son is ready - by helping him explore the world around him and showing him the roadmap about how society operates (basic rules) without compromising his individuality. Also, Leo Kanner (who was considered the person to first "name" autism just in case you are unfamiliar with him) did a follow up study on his original patients and found that although there was no indicators when they were first seen some of the kids were quite able to be independent and "successful" (college degrees, jobs). One of the the similarities he noticed about those children was that their attempts at interaction were supported by their families, but that they took the initiative when they were ready. Here is a link to his summary. http://www.neurodiversity.com/library_kanner_1972.html

Also - have you tried to teach sign language to your son? Some feel that instead of encouraging kids NOT to talk it actually helps them organize language while additionally giving them a way to communicate.

Edited to add link (duh) and because I hit submit before preview

Thank you for your suggestions. Best of luck to you - and everyone on the spectrum. My hope is that if I can educate just one person on how not to look at our children with prejudice, then that's success. Good luck in life - please remember my Jack. He needs extra prayers.
Thank you.

I'm not religous so a prayer would be insincere for me. However, my thoughts are with you.

Yes, the goverment SHOULD offer more funding but that's not what the bill is about.

I'm sorry if I offend anyone with this post, I feel it has become the only way to get my point across:

The goverment wants to help ASD children as much as you-know-who wanted to help people who practise judasism.

Hey, do you know what's the name of the girl who dreated this site??

You know, if this kid Jack can read at a second grade level at only age 6, he has a pretty good chance of learning to communicate--maybe by writing, maybe by picture-board or sign, maybe even by speech. I don't know a lot about being non-verbal, because I'm only an Aspie and I learned to speak by age 1 and to read by age 4; but I've heard enough from people with autism to know that often times, they are much smarter than they are given credit for. Often, given a stable environment and surrounded by people who persistently try to find out what the child is thinking, saying, and feeling... They will actually figure out by themselves, a way to communicate.

If he can read at age 6, then he probably has a normal (or higher) IQ; and that's one of the biggest indications that an autistic child is going to have a decently happy life, able to contact the rest of the world if he wants, able to spend time in ways that are fulfilling, maybe even to hold a job and graduate from high school, depending on level of communication and desire... maybe he'll need help all his life to handle the mundane chores like bill-paying and cooking and whatnot, and to deal with all those unpredictable things that he doesn't have a set response to; but also not "locked into a world of his own" unless he retreats there by his own choice when the world gets too overwhelming.

i am sorry but no i don't. i got the link from someone on this site) so maybe someone else knows...
I am glad to hear this . and don't worry jack and your other son will be in my thoughts ad prayers

Joe Barton is an ultra-conservative from an ultra-conservative state. If one was to do research on him, you'd find out he's a typical oil and war pig, who has done contract work for Atlantic Richfield Oil and Gas Company before entering office.

He is also profoundly anti-medicaid, and has stated that thanks to Medicaid, "America's neediest get healthcare paid for by taxpayers." The problem with these people is that if they are asked to come up with a better solution, they'd have no idea what to say and will probably even be in total denial that that there any other problems except terrorist threats.

The only thing that Joe Barton appears to be on the right track is with his view on data security, which seems to somewhat contradict his pro-corporate.

I wouldn't expect him to stick up for autistics, because I wouldn't even expect him to stick up for the common person.

- Ray M -

This bill was never intended to help the auties already here. It was strictly intended to prevent further autistics from being born, and trying to turn the auties of today into "NT's". How insane.

Fite4Jack, I'm a mother and wife to two of the greatest guys on the spectrum. As a small child (maybe 18 months old) a pediatrician dx'd my son with autism and walked out of the room. I ran out of the office and never went back, putting that word out of my mind - I was just unable to comprehend it relating to my baby.

10 years, and much heartache later, he was dx'd with AS. We went through the non-verbal years, the head-banging hand-flapping meltdown years, the monkey-sound screaming years, the drooling, you name it, we went through it all.

But over time, with love and patience and a big dose of LEARNING for me, these things got better. I learned (mostly from some wonderful folks right here and at a few select other sites) WHY my son did what he did, and learned to make his environment more friendly to him. I am the only person working in the house of 4 (we have an uber-NT daughter too), and live pretty near paycheck to paycheck. There was no money for doctors, tests, medicines, or high-faloiting treatments.

Today my son is in Jr. high. He wears jeans (amazing given that he couldn't do butons or zippers last year and that the fabric alone drove him nuts two years ago - sweats were all he owned till this Sept), got a detention yesterday for TALKING!! (I was secretly very proud :) He gave a book report as a verbal speech to the whole class and got a 4 out of 5 just on eye contact alone.

We learned that we had to let him be him, and follow his lead, then gently help guide him where his behaviors may not have been socially acceptable.

His IEP report just came in this week, it stated he shows no anxiety with the new school/schedule, hands in all projects on time, is never late to class, and received high grades in all classes. (Including a 99 in Tuba, this from the boy who would run down the hall with his hands over his ears screaming if I didn't hit "mute" as soon as the overly loud commercials came on during shows).

What I'm saying is that maybe it will happen, maybe it won't, but it's not up to you - it's up to Jack. And the harder you push, the further back he's going to go, until someday you can't reach him at all. Don't let that happen. Just help him be the best *Jack* he can be - WHOEVER that turns out to be.

I think first tho, YOU need to reconcile yourself to the child you have.

Just my .02. Don't bother flaming me.

I am going to put in my own $.02.

1) I think the wording of the title of the bill is misleading. I have read what is in the bill and most of the money would go towards treatment methods, most of the effective ones allowing a person to be able to live in this society as themselves.

2) Aspiemom: You have to understand that you are lucky that your son got the services that he needs. In Rochester MN, for every child with an ASD that gets the services they need, there are 5 that do not get any services at all because of the way the state defines ASDs for educational purposed.

3) We have to understand that not all persons with ASDs are as high functioning as some of the people on this board. For some, even teaching them how to communicate takes years of work and tons of resources. Many families spend on average $100,000/year for services for their children and most do not get reimbursed for it by either insurance or help from the government.

4) Finally, those that are lower functioning, especially those that do not communicate in any way, are very vulnerable. As I type this, a LFA was assulted by his school bus driver about a month ago. That driver is still driving a special needs bus and the police a dragging their feet. In the meantime, the parent is trying to knock down barricades and commincate for a person that cannot. We need to find a way to protect and help our LFA brothers and sisters, not leave them out in the cold for our own agenda.

For this to work, we need to get involved in the political community as well as our own. We and the parents need to work together for change. We may be a small minority (although are numbers would swell just a little) but even small minorities can become focus groups. But it will not work if we are fighting each other as well as the people that although have our best interests in heart, may be misguided. We need to find out how our brains work and how they are set up. We also need to show that those of us with ASDs, small in numbers, have quite a bit to contribute if we are allowed to.

I think this bill addresses some of it. It at least gives the parents some resources to help their children, all of them. It also provides resources for research but research is not a bad thing that the anti-curbies will lead you to believe that it is. To effect more positive change though, we need to take this step in the right direction.

I should not have to, but my asbestos suit is ready.

What my son got what speech therapy for his apraxia when he was younger and for his pragmatics for less than a year after the AS dx.

He also received one year of "social skills training" - this amounted to the school inviting several "NT" kids in to a "game time" along with my son and one other child with an AS dx. This was to teach our kids communication and turn taking.

That's the sum total of the outside "help" we've ever received. As I said, my son was originally dx'd as autistic, but I was suffering a serious case of denial at the time. He was non-verbal, would sit and watch anything that went in a circle for hours, and was still drooling in 3rd grade. (But hey, he was reading on a 5th grade level and we all know how important the schools think that is). Despite his obviously superior IQ, since he couldn't display it in the proper fashion he nearly flunked several grades.

What turned things around for him was me coming out of my hole, listening to people who had BTDT, especially those on the spectrum themselves, and worked with our son in his parameters.

My husband and I had many fights over this for years (and this was all prior to us finding out DH is also AS) because he felt I was molly-coddling our son. At the end of the day, what I did worked as far as I'm concerned.

My point was that you sometimes have to look to your child's world to find out what will work.

My newest neighbor's son is 17. He is what most would consider profoundly autistic. He can neither speak nor use a pencil. However, at the keyboard he writes the most beautiful, moving poetry I've ever read. His parents and his world are all symbiotic to his existence, and so he functions well where he can and his parents are there for him. Not spending ridiculous amounts of money on "therapies" to try to make him into something he can never hope to be. Instead, supporting him to help him be the best he can be.

That's the best thing any of us can do for any of our kids, dx or no, imho.

the most expensive therapy we've ever bought is the sheer amount of physical labor we've spent in: not working out of the house to stay at home with son and moving to different regions first to be in a better school district and second to get a better paying job so one of us can stay at home.
Maybe my observation is limited, but everyone I have ever talked to or heard about that spends "thousands" on therapies hasn't seen nearly decent results. I have a cousin who was sent to what they call a special school-I would call an institution. They say the results are fabulous but this kid doesn't talk, can't live at home and still has stereotypical traits. What can they be doing?
Another lady spends thousands on therapies, bariatric chamber sessions and under the table respite care workers. The best thing for her son has been teaching him sign language-she taught him that, along with another public school teacher.
I don't know anyone who has been able to help an autistic communicate better through expensive therapies. Really, that's the only goal.
So, really, the gov't isn't going to compensate me for tutoring my son, buying him a Nintendo, or threatening legal action on the school district. We won't get compensated for leaving Indiana, California, or for quitting a high paying job so my husband could stay at home during those critical years. Why should they compensate others for choosing a barrage of therapies that haven't helped their kids anyways?

Actually, contrary to what you are saying - you are not completely right, my son (although he's a tough one) has made huge progress from intensive inhome therapy... To put all autistic people into one basket is wrong... some respond to therapy quite well. Others do not. I believe your wrong to suggest that your position is the only correct one. I think it would be advantageous to understand that this is truly a "spectrum" disorder --- and some will do better than others. Why condemn someone for doing all they can for their child? I think you are to be commended for all you've done for your child - and if someone else wants to try other avenues - why cut at them for that? When you loose "hope" - you've lost it all. This is my last post. good luck everyone.

Yeah, reinterpret what someone has posted and split. There you go. That's what you did in the beginning of the thread when you accused me (unjustly) of working for the politician named in the title (because I stated my own opinion).

I stated very clearly that my position is based on my personal first-hand observation, which admittedly is limited. But, for all you say, you don't say what those gains are that your son has made with $100k invested. I have heard all that before. People spending thousands of their own money and taxpayer money and no listed results. You don't even know what your son is thinking because he is still not communicating (according to you).
I never said my position is the only correct one. I'm saying that my methods show the only visible success I have seen or heard of. And my measurements of success are radically different from those of the "curebies". I'm not going to torture my son for 8+ hours a day to cure him or stop his stymming, obsessing or stop his need for nonverbal communication.
Is stating my opinion condemning someone else? What if they want to spend my tax money on doing something I consider futile or even tortuous? It's like tax-vouchers for private schooling. It's not the gov't's place to fund private choice.

As far as this bill being "something" for families - sometimes a half attempt is worse than no attempt at all. As I said before - try getting another dime for real programs to help autistics after this bill has been approved. And I have read through the bill also - and had someone who deals with politics, but has no personal interest in autism also read through the bill. He agreed that it serves other purposes than putting autistics first. People who wrote the bill are RELYING on the neediness of the families to make them push for this bill to be passed while they laugh all the way to the bank.

Also - in our state financial assistance is ties into having the child in a specially designated classroom. Therefore ALL homeschoolers receive no benefits and those whose schools refuse to label according to what the state requires get no benefits. That leaves alot of people here without benefits especially since insurance companies are allowed to deny coverage for anything related to autism. However should that equal support for this legislation just because they might toss a few crumbs from it towards the families.

And I think the bigger picture of using kids for research should be considered. If this bill was truly supposed to put people with autism first then immediate funding of programs that are already in place and available should have been the top priority. Then focus on public education and ethical research into therapies - not research into prevention of autistic individuals.

And in response to the idea that children make tremedous gains through expensive therapies - there have also been children who have made tremendous gains WITHOUT tons of therapy. So you can not simply say that every child needs $100,000 worth of ABA (or whatever) to be successful. Michelle Dawson and others dealt with that in Canada when it was going to be a mandatory "benefit". I find it odd that so many people who are spending tons of money feel that kids with "severe" or "classic" autism or LFA need things like ABA and without it would not make any improvement what-so-ever.

Ah, so this isn't direct assistance to the parents, then? It's definitely about throwing more money into the schools? (Oh, and screening the kids... but that's to be expected - if the schools want to get the autistic money, they're going to have to start finding autistic students to justify throwing the money around on.)

And, I assume, if the school has no autistic students, it loses the money. So, institutions being what they are, the schools start inventing autists to keep the money coming in. Hey, not enough autistic kids in the school? Well, just call that kid who got expelled for selling drugs on school grounds or threatening other students with a knife back in, label him as autistic, and shove him in the same room with the real autistics, and apply for more money from the government to "treat" him. If the thug begins disrupting the rest of the class or worse, then apply for more money to hire in more "classroom monitors" to keep the teachers and autistic students safe... and then ask for money to start funding research to figure out why autistic students are suddenly having more problems, and why some of them aren't responding to drugs and special education techniques as expected.

The more I think about it, the more I feel like something stinks about this bill. Perhaps working in government institutions for too long has left me far too cynical, but I'm really not trusting the motives of the law, or the people who are really pulling the strings to get it passed - I'd have to look over the bill to find out for certain, but I've got a bad feeling that the parents aren't getting any real assistance out of it - rather, I expect that it's really about dumping tax money into the pockets of lobbyists and lawyers, of researchers with dubious motives and little likelyhood of fixing anything and of pharmaceutical corporations, and of course the beaurocrats who'll be hired in to shuffle all the paperwork around.

I'd feel better about it, if it were a non-profit private charity organisation collecting the money of volunteers to give financial aid to parents of autistic children, something similar to the March of Dimes or the American Red Cross. A charity that can be held accountable for the way it spends its money and which can be shut down and prosecuted for misappropriating the funds or otherwise acting in a corrupt manner.

By the way, which schools get the money? Will they only be public schools? If so, do you really want to get stuck having to throw your autistic children into public schools just to take advantage of all this "free money"? It's been my experience that public schools are the absolute WORST place to put a vulnerable child who is, in any significant way, different from "normal" - and I have no reason to believe that even all the extra funding in the world will ever change that.