Bob Wright Talks Autism on Fox Business

Click HERE to listen to Bob Wright talk about autism on Fox Business.  

Comments

[Robin Nemeth]

I’ve been called ‘whiner’ a lot in the time I’ve spent in internet political chat rooms. I didn’t expect to meet up with the ad hominem on this particular forum. Usually in those chat rooms the invectives were followed up with some really nasty ridicule (of both myself and of those children who are on the spectrum), and then usually in pretty short order by a long term ban from the channel, usually by those operators who I knew to be employed in the health care field in one way or another. It would get so very old and so very ugly. Seeing the ad hom here and fearing it could be just a foreshadowing to all of the above happening again was at first discouraging enough to make me just want to say to myself “just let it go, don’t even bother to respond in any way, it’s not worth it”. But I have to assume that at the very least, people here won’t be going into ‘let’s laugh at and make fun of her and of children with autism while we’re at it before we ban her, that’ll be tons of fun’ territory, as they so often were prone to do in political chat rooms.

When I hear the word ‘whine’, I think of somebody complaining about something petty and minor that’s happened to them, something that they really shouldn’t be complaining about. I so often hear people saying that parents who ‘whine’ about autism really have children who aren’t that bad off, or that their children are just basically spoiled brats who only need discipline, and from there they go into accusing parents of ‘whining’. Having no children, myself, diagnosed on the spectrum, I’m finding it kind of hard to understand how the term might apply. But perhaps you think I should never have spoken or written publicly about Autism Speaks and the false accusations and the arrest attempt and the libel against me, or at any rate that I shouldn’t be going on about it still (even though I’ve never received an apology). Whatever. If you would like to refer to my comments as ‘whining’ have at it, however I don’t really understand how that makes me wrong or how it harms anyone’s efforts to get treatment for their child.

Then again nobody has actually referred to me by name as the ‘whiner’ in question, so perhaps I’m being overly sensitive.

Amy wrote: “Everyone should know by now that when you code your claims with the physical conditions you're treating (e.g. gastroenteritis and colitis, encephalopathy, toxic effects of mercury/arsenic and its components, unspecified disorder of immune mechanism, NOT autism), then your treatments should be covered (mine have always been).”

What about the children who don’t present with GI symptoms? (Remember, there’s that Mayo Clinic study which, if you believe it, showed that that is in fact the majority of children with autism). What if I happen to have a child with no GI symptoms but I still have more faith in dietary intervention or chelation or hyperbaric oxygen than I do ABA? What good will creative coding do me then? Surely you aren’t suggesting that doctors outright lie when they code for insurance coverage are you?

All of this still leave me asking myself the question – why won’t insurance cover ‘autism’ per se. I have even heard many say that they can’t get coverage for certain things if their child has an autism diagnosis that they would be able to get coverage for if their child doesn’t have the autism diagnosis. Is this not the case, was I being lied to or misinformed? Will it change if this health legislation passes? If it’s true, why is it the case that they haven’t been able to get certain treatment they need simply because a doctor diagnosed their child with autism?
Do insurers feel it’s just too expensive? Isn’t that the whole point of insurance—to cover those things that are too expensive for families to pay for on their own? Do insurers believe that no treatment exists that is really beneficial? Why was ABA recognized as helpful for so long but yet uninsured by so many plans for so long? Why should I assume that if ABA is to be recognized because Congress says it should be, that soon diet/chelation/hyperbaric oxygen/etc will be as well some day?

I really have never understood the reasons that so often an insurance company will just refuse to cover certain things. To me it has just seemed to be almost random, but I don’t think it is. They figure out what the odds are and what illnesses will cost and from there what they will have to charge people for coverage. And they try to make a profit, and they must believe that they are better able to do that by leaving out coverage for certain conditions. And I don’t know how they do it but I don’t believe that the decisions are made simply by looking at pure as the driven snow science. There wouldn’t be so many lobbyists contributing so much money to Congress if that were the case.

Lord knows the insurance policies and laws are complicated. I read about ‘recognized treatments’ and ‘experimental treatments’, and I’ve no idea what the terms mean in the context of health insurance coverage. With any other service or product that is being provided, the seller would try to make their product worth, to consumers, the money that is spent. If word of mouth spread that a product wasn’t all it was cracked up to be, people would stop buying. You’d think that with health insurance, if an insurer tried to deny coverage for something that was supposed to be included in the policy, or even just arbitrarily excluded certain things from coverage, consumers would avoid the product. But maybe because the policies and the laws are so complicated and because for most people health insurance isn’t something they purchase outright but instead get as a benefit from their employer, this doesn’t seem to happen with the health care insurance industry. And when it comes to denial of autism coverage, I hate to say it but I think that the associated stigma allows insurers to feel that they can get away with this sort of behavior more than they could for disorders such as cancer asthma or other disorders. At any rate I’ve read that even in states where coverage is required for ASDs, insurers often deny coverage, because they know that the laws won’t be enforced.

Insurers have traditionally tried to claim that they shouldn’t have to pay for so many of the ‘mainstream’ treatments because, they say, these treatments are education and not medicine. Which leaves me asking myself this--If the publicly funded schools haven’t been able to do an adequate job paying for your children’s care, what makes you think that a publicly funded health care system will be able to do better?

The fact is that for so long now, autism hasn’t been covered at all in many states. If Congress passes a bill that makes it so that ABA will be mandated, I don’t believe that that necessarily means that soon all of these other forms of treatment will be covered. Why should it mean that? Frankly I’m hoping and praying that this bill won’t pass. But if it does, then I hope your children all respond very well to the ABA and that you all are very happy with it, because I honestly believe that you’ll get no other forms of treatment for a very long time if ever . It won’t matter to me one way or the other because as I’ve said my children are unaffected by ASDs. They might however be affected by other medical problems one day. I don’t have a lot of faith, if this bill passes, that they or I or my husband will end up getting the best treatment for our problems that we might otherwise get. I just believe that the treatment we will get for anything that might afflict us will be the treatment that’s the most politically expedient. But I’m repeating myself..

It’s not that I don’t think insurance coverage for ASDs is a great idea. I think it’s a no-brainer. Of course it should be covered. I just wish it didn’t have to be done this way, and I wish it could be more inclusive.

I want to see the people responsible for this held accountable. I think that that is what will lead, in the long run, to the best outcomes not just for children on the spectrum, but for everyone. All I’m saying is that it doesn’t look to me like this health legislation, if it passes, is going to do much toward accomplishing that goal.

Bens Mom wrote: “This is not a zero sum game, where something good for behavioral treatment means a loss for biomedical treatment.”

I believe it is, when the government is using tax dollars to fund our health care. There is only going to be so much money allocated because there is only so much people will be willing to be taxed for health care before they’ll revolt.

[matt's mom]

To Ben's Mom: A-FRICKIN-MEN! Well said! We are finally getting somewhere with insurance and should all be united but instead we sabotage each other. So stupid! It's like people who are starving finally getting some rice & instead of eating it they kick & scream because "Where are the meat & vegetables?"

[Elizabeth]

How sad, the nation we've become. We have to convince citizens, local governments, states, and our country that financially, treating autism is beneficial to do, that it is financially better than the current scenario...forget about our ethical and moral obligations to these children.

[Benedetta]

Amy,
Not sure I want the medical people to be teachers too, since they seem to barely cope with the medical stuff.

On the other hand, public schools have been good to my son. If not I have been there to see and ask what was the problem. Unlike the medical profession that ignored me, the teaching profession busted their guts to either change themselves, or me or my son in order to help the situation.

[Amy Becker Clark]

I left this same post on Kim's inclusion article, because I think these two articles are very inter-related.

"I consider it my responsibility to reign in behaviors from home, using diet and biomedical treatments, so that the school has three girls who are comfortable enough to take advantage of their learning opportunity. "
Couldn't agree more. That is exactly how my son has progressed... I get him healthy so the school can "rehabilitate" him. You can't train the mind until you stop the disease process! That's like teaching a stroke victim to walk again, when he's still throwing clots everyday that block bloodflow to the brain!
And while I agree with the whining that insurance mandates should also cover biomed and not just ABA, in reality I don't think it matters. Everyone should know by now that when you code your claims with the physical conditions you're treating (e.g. gastroenteritis and colitis, encephalopathy, toxic effects of mercury/arsenic and its components, unspecified disorder of immune mechanism, NOT autism), then your treatments should be covered (mine have always been). Getting the "rehab" covered as well (ABA, ST, OT) for the resulting developmental conditions (autism, apraxia, whatever) would be a huge plus! And, it'll be good to have "medical professionals" oversee the rehab process, instead of relying only on education professionals (the schools) like we do today.

[Jessica]

ABA has been an invaluable tool for both my child and my family. ABA also varies wildly based on where you are and who is doing it. Our state "free" developmental preschool was a joke, and I pity any child that has to suffer through it. Those were my options.

Our state autism mandate forces our insurance company to pay for ABA almost completely. What this has allowed my family is more funds to pay for biomedical treatments that are not covered by insurance, including our pricier than life DAN doctor.

I am a staunch supporter of biomed and also a huge advocate for ABA. We really can be BOTH. ABA is huge for my son, huge in our recovery, and I am blessed to live somewhere that already forces insurance companies to pay for it.

[ben's mom]

Jenna makes an excellent point and one which we who are embroiled in our own fights often miss. Our community is perceived as embittered, embattled and difficult to please by those who want to help but don't understand the nuances of each of these "camps". And we desperately need these people to take up the battle on behalf of people with ASD.

I fear that as time goes on, if we do not work to find common ground we will drown in the rising storm surge of our children and soon to be adults' needs. And it is precisely these people, the now children, soon to be adults and sadly future generations of families who need us to step up for them and find a way to work together. From an advocacy and legislative perspective we are their voices. And what does that sound like? Right now, I am hearing a cacophony of arguing with a little whining on the edges. Our voices need to sound like the Mormon Tabernacle Choir singing Ave Maria on Christmas Eve (not a bad metaphor for a Jewish girl)!

When an organization like Autism Speaks does work which should be non-controversial, we still find some reason to complain and instead of "catch 'em being good" we remember all of the our grievances against them. When Autism Society fights for health reform that benefits people with disabilities by requiring coverage for pre-existing conditions and requiring parity, we complain because they didn't specifically push ABA coverage, when an organization fights for adult services we say; "but what will that do for my 5 year old?"

Listen people, when someone in our community does something good, take it for what it is. This is not a zero sum game, where something good for behavioral treatment means a loss for biomedical treatment. We are chipping away at a very big rock and there's plenty of places to chip away at and room for lots of folks to work on the things that matter to them.

[Henderson]

Wow. He is amazingly well spoken, knowledgeable and convincing. I wish I could write as well as he speaks. So, I'll make this one short :).

It's a wonderful place to start.

Thank you Mr. Wright.

[Benedetta]

Jenna Smith,
The IVIG does not a doctor have to order that. Did you talk a doctor in to doing it?
Please explain a little bit more about that whole situation?

[Twyla]

I really like how Bob Wright concisely debunked the "autism hasn't really increased" thing.

[Robin Nemeth]

Jenna wrote: “the behavioral interventions are the low hanging fruit at the moment … we're not yet there with biomed (not in terms of our reality, but in terms of the type of science that the mainstream medical community likes to see)”

It’s been my experience that the science that the mainstream medical community likes to see is science that doesn’t implicate the mainstream medical community.

In the last five years I’ve seen so much censorship and thuggish intimidation from the mainstream medical community, most of the ‘support’ organizations, and the media. I no longer have faith in the mainstream medical community. The mainstream medical community in fact terrifies me.

You say that I can count you in to fight for anything I might need. What I need is to turn on my television and watch the nightly news and see the truth for once. What I need is for the parents who believe their children were vaccine damaged to be told by Congress “gee this is really insane, what we did a couple of decades ago, when we passed that legislation that said that you couldn’t sue vaccine makers in a regular civil court but would have to go to a special Vaccine Court where cases would be heard by Special Masters rather than by a jury of peers. We need to do something about that so that you have your equal rights under the law returned to you, because maybe the whole notion that the vaccine industry is too important to be allowed to fail is a really stupid idea.” That’s what I need to hear. Will you fight for that?

I’m afraid that if a bill like this passes, the insurance industry never will see fit to pay for any of the other treatments that I’ve mentioned. ABA may be expensive but it does have one thing going for it--it in no way implicates the mainstream medical community. And the expense won’t matter once taxpayers are footing the bill.

And the people responsible, if this is iatrogenic, won’t have to face up to what they’ve done or do a thing toward rectifying it.

BTW Jenna no one in my family will benefit from anything that Bob Wright is proposing or from any of the other treatments that I’ve talked about.

[jen]

Thanks for your advocacy, Mr. Wright!

[Teresa Conrick]

Jenna,

Your comments ring so true:

"your wealth is my poverty is the notion. Everybody should be fighting for everything. So count me in to fight for ABA, and anything you may need Robin, even if it will not impact my child. That is the only way we will win."

Excellent analysis of what is needed. It is a generous and brilliant offering that will help all concerned. Thanks.

[HeidiN]

I recovered 5 kids (one adopted) with biomed only, no ABA. It is rediculus to focus on ABA over biomed when our children are medically ill. I would be happy to promote ABA if I had heard better reveiws on it. But, I am not hearing great reviews from parents nor ABA therapists. I went with the great reviews, which happened to be from treating pleomorphic pathogens. That is why I was successful, I followed others who were successful. I still think therapies like ABA can be helpful, just not helpful enough to be more important that biomed. But, with biomed, many are not understanding that you have to treat for pleomorphic pathogens. They are too caught up on opportunistic pathogens and toxins. They are a problem, just not the cause.

[Jenna Smith]

Hi-

Robin, we do plenty of biomed, too. We're about to embark on a course of IVIG which will not be covered by insurance. So of course I would like to see coverage for my son's medical care and ideally, any legislation would require coverage for as any treatment, medical or behavioral, prescribed by a medical doctor. However, the behavioral interventions are the low hanging fruit at the moment (it is indefensible that they are not covered given the number and quality of supportive scientific studies). We're not yet there with biomed (not in terms of our reality, but in terms of the type of science that the mainstream medical community likes to see), unfortunately, so that would be a much harder sell. And Robin, my family will not benefit personally from what Bob Wright is doing as my son no longer needs ABA. However, I believe it is so important that we in the autism community advocate for all legitimate legislative initiatives, even those that won't directly impact our child.

I recently left a parent committee at our school district that works on special education issues. It has been in existence for over four years and has accomplished almost nothing. Almost every parent on the committee is advocating away (furiously) for some very narrow issue affecting only their child or a few children, and no one can ever build consensus. If everyone would join together and help one another (each supporting each other's proposals), much could be gained, but no one will do it--your wealth is my poverty is the notion. Everybody should be fighting for everthing. So count me in to fight for ABA, and anything you may need Robin, even if it will not impact my child. That is the only way we will win.

Peace, blessings and unity to us all.

Jenna

[David Veal]

I have an autistic child and for the last two years my design studio has volunteered to raise funds for Autism Speaks. You have to get in to the legislative process to make a difference. On a side note, we just took my child out of the public schools for home schooling and next year we'll use the county's virtual learning services. After k-7 we realized that he just suffered too much of the anxieties to optimize his education. So, we are happy he was mainstreamed for those earlier years. Now he can focus on the academics and have friends over in a more concentrated way.

[Garbo]

I think it's wonderful for the debate over health care reform to include a discussion of autism, but my concern is that in demanding coverage for a behavioral therapy but not for additional medical therapies like chelation, HBOT, LDN, etc., they are deliberately or inadvertently reinforcing the old conventional wisdom that autism is a genetic/mental/behavioral disorder rather than a medical one. It means that insurance companies might not be required to pay for all the blood tests, allergy tests, endoscopies, etc. that our kids need. It reinforces public attitudes from the likes of Dennis Leary and other uninformed people that our kids just have a behavioral problem or we are bad parents. And it leads parents of newly diagnosed children down a path that may not be optimal for recovering their children. When we were first diagnosed, the "expert" consultant advised we do 25 hrs./week of ABA, mainly because that's all she knew about. I can't imagine where we'd be right now if we'd listened to her. Not recovered, that's for sure.

[Dana C. Sturdivant]

Go Bob Go! I am not a fan of Autism Speaks, but I do feel Bob Wright is working his tail off to get our children the proper Insurance coverage and for that I thank you Bob Wright! I live in Mississippi, I am a biomedical mom, I have taken out 2nd mortgages to pay 10k here and there for three weeks of hyperbarics at a time, 20 IV chelations, 3 different DAN doctors, homeopath's, diets, and the list goes on to ABA, speech etc. we are somewhere in the ballpark of 170k in the last three years and are just feeling it really hard, exhausting every dime we have in savings, praying for a recovery. My nonverbal son now is just starting to communicate some after three years of intense biomedical treatment.He is one of the tougher nuts to crack. Chelation being the key to his language success. I would take ABA, speech and OT in a heartbeat and be grateful, but I do feel there should be a study done on successful cases of chelation, antiviral therapy, antifungal treatments, so that we can include those in the Insurance coverage for our regressive in my case vaccine-induced Autism. Recovering these children now is in the best interest of our federal and state governments.

[Charles]

I speak as the parent of a 15 yr old Autistic child.
I weakly support the concept of insurance payment sfor ABA.
The issue is that this will be a great benefit to those that provide the service and Rates will go even higher. I live in New York where the Department of Education will only allow special Ed teachers to provide ABA. The costs are therefor astronomical to the City and they ration services. Creating more demand without creating a supply of reasonably trained and certified ABA caregivers will be a mess.

[Robin Nemeth]

Jenna and Sarah,

I hope you’re right, and I’d like to see this as a good first step, but I can’t help but be skeptical. What else will this bill do, besides mandate coverage for (certain limited) autism treatments?

I haven’t followed closely the wordings of the various bills that have been going thru Congress. They’re much too long for me to read, that is the only thing I know about them for sure. But I’ve heard a lot of talk about legislation that would mandate that people must purchase health care insurance. (To me, this would mean in essence Americans being taxed in order to fund the health care industry.)

If that happens, it isn’t going to matter to the insurance companies what they might or might not be forced to pay for. It seems to me that an industry that is selling something that Americans are mandated by law to purchase can charge whatever they want to charge for their service.

In that case, they’ll cover whatever is politically expedient, not what is in anyone’s interests financially or medically.