Katie Pardon me for not sharing your optimism about DoD on autism. Are you aware TRICARE doesn't cover the most effective and scientifically proven autism therapy, Applied Behavioral Analysis ABA), in the basic TRICARE benefit? Are you aware ABA is only covered in the ECHO program which limits the amount covered in ABA therapy per month for active duty and TOTALLY EXCLUDES THE CHILDREN OF MILITARY RETIREES? Are you aware that for five or more years, TRICARE has been calling ABA an "educational modality" or "special education" in order to avoid having to cover ABA in the basic TRICARE benefit? Are you aware, TRICARE recently reversed its position on calling ABA an "educational modality" or "special education" in light of the lawsuit that forced them to retreat from this indefensible position? Are you aware, TRICARE now says ABA is not proven to be effective? How does that make all active duty military feel whose children have been receiving ABA therapy - that TRICARE now says that therapy hasn't been proven effective. Thanks but no thanks on being happy with DoD.

You cannot be nice to these people!

We have tried this and it don't work!

It sounds like that my children's peds must have attended all AAP meetings cause they mimic these guys to a TTTTTT TEA!

Except my children's peds were on the front lines, watching close up and personal, the bugs at eye lever (so to speak). They weren't up high somewhere on the totum pole like these guys who have to squint to see US ground crawling bugs (autism kids and parents). Nope my kid's peds were at ground level, watching the suffering and could care less. I had to twist their arms to get them to send us to a neurologist - my son having absentee seizures, myclonic jerks, and they were willing to allow him to have no treatment for years!!!! Who did they choose to send my son to - what neurologists did they continue to send my son too - their college buddy that was willing to help keep it all hidden. "Good o'le boys" nine years of this crap. Time does not bring them around. Being nice for a long time does not bring them around.

They told me when my son was less than a year old not to worry it is febrile seizures ( Do febrile seizures show up on an EEG as he falls asleep without a fever?) and they told me that 75 percent of the cases of febrile seizures they will outgrow them. I stayed with these peds for 18 years between both of my kids. My son was 14 years old, (oh I went other places- other doctors too during that time; with no luck because I was too confuse to figure out what to say, or what was needed; so it did little good). Besides I felt forced to stay with the lying SOBs because I needed antibiotics for sinus infections/constant pneumonia - as was said here many times - our kids are multi - system sick.

These were always uneasy doctor visits. They were uncomfortable and I sit and stared at them. I never said anything mean, or snotty, besides I could hardly get a word in edge wise anyway. So, I started writing them letters and mailing it to them. They found time for that!

They knew so much more they were not saying. One ped asked me one day "Where I thought Kawasaki's came from for my daughter?" Welllll 14 years to get that much out of him. Geee whizzz I was so dumb, so focused on my son I did not have it figured out!

What they took from me were the potential of my kids. That is all I should complain about buttttt still --- there are smaller things they took from me too that I suppose makes me an even smaller persom for even thinking along these lines but: ---they also took my trust in justice, trust in the American way, trust in my government, and trust in myself (I may have a masters degree from Eastern Kentucy Univeristy, but they must have just felt sorry for me and just gave that degree ) - because I am so foolish.

You can not be nice to these people! You can not be even civil! They just take it as they can run over you, that you are so foolish that they can lie to you, and they will.

I am in the military and my 5 year old son has autism. The best thing that has helped us on our journey is the coverage from Tricare, our health benefits. It does pay for biomed and speech and occupational therapies, where other insurances don't.

However, we have never had the support from military for helping my son get better. I have never been asked to fill out a survey or asked to sit on a board. We have ECHO coverage but there is so much red tape we have not accessed anything it "provides". My husband's location assignment officer thinks that autism is not really treatable and we always plead to stay in our current place so my son can continue to receive services. He's about to send my husband overseas as a next move, and that would split our family and he would go alone (like other military autism families have chosen to do) because there are such minimal services in remote locations.

I could go on, but I think you can understand how frustrating and stressful it all is. Please don't generalize the military/DOD experiences. In the military there tends to be a lot of meetings and though the agenda sounds good often the affected don't receive any benefit (familiar story for us all...)

I respect and defer to the comments made by military families regarding access to ASD services and insurance re-imbursment. I cannot even imagine how difficult it would be to have an autistic child while serving in the military. I agree that good research is no substitute for actual help.

I am frequently accuses of being hypercritical of the NIH and other autism organizations. I am sure that is true but that doesn't mean I'm wrong. I thought it was important to acknowledge a rare instance in which a sincere effort is made towards fully including a diverse body of stakeholders in the grant making process. I wish all autism federal research bodies operated with the level of respect for stakeholders as the DoD.

Lest we Forget...

David Kirby wrote an article about the collaboration between the DOD and the CDC. Here is the quote: "a collaborative program between the CDC and the Department of Defense says that multiple vaccines may not be safe for everyone (at least in adults being inoculated for military service).

We have preliminary findings from one of our many on-going research studies that suggest a relationship between adverse events and multiple vaccinations exist. These findings will require validation, but heighten our concern for the current clinical practice of multiple vaccinations."

What ever became of that line of thinking? I'd like to see research to evaluate the outcomes of multiple vaccines given at the same time vs single vaccines and what about vaccinated vs unvaccinated???

I'm not ready to give my trust to the government agencies who slyly avoid the obvious scientific questions, yet pretend they are interested in our concerns in a stakeholder meeting. Sorry, but I think it smells rotten.

I can see how in one area the DOD may be doing well in the autism research arena. But when the only child in our immediate family with ASD ( I have a second cousin who is Autism/Fragile X dual diagnosed, carrier is not a blood relative) is the only child whose maternal and paternal grandfathers served in military conflicts (vietnam and gulf war), and whose father is the only one in the military (anthrax and smallpox vaccines, etc.), you can see where the military medical establishment is a source of suspicion. And now every time we go to see the military doc they point out how my son's past due on his "4 yr old" vaccines, despite the fact that the recommended window is ages 4-6, and he won't really be past due until after age 6.

Also, the Air Force special needs program was found to be out of compliance on several key issues. But to the military's credit, the parent initiated IG investigation was well handled and timely.

We are a military family and some of our best doctors have been military doctors. We are also extremely grateful for the insurance, however, it can be confusing. We are in the ECHO program also and we've realized that even the people who work in the ECHO department don't know how it works! I would be really interested to know how to get biomedical treatments paid for. We were told we can see a DAN doctor just as soon as we find one that is on our list of network providers. None of them are, last time I checked. I'd also be interested to know how to be one one of these panels.

"I want to thank the DoD for taking a chance on working closely with stakeholders."

Count me a little skeptical. Who are the real "stakeholders" in the military industrial complex? The people? The ruling elites? The multinational corporate interests?

Studying "causes" and designing "treatments" for autism and "cancers" is only a hairbreadth or nuanced definition away from designing and field-testing bioweapons.

Soooo, sometimes when something sounds too good to be true, it's because it isn't true. Is there an ulterior motive here? We've ALL been fooled by pharma before! Their track record does not exactly inspire confidence in them. They have never earned our trust.

How much power does the DoD have? Are they on equal footing with the powerful NIH,FDA and CDC? Will they start to lose funding because they will be seen as dallying with the enemy?
I want to believe that just as our military places itself on the front lines and defends all Americans, that they are putting themselves between us and the above named agencies and will be able to do the research and defend and protect the future of the worlds children.
The least that may come from this is the ending of the mass over vaccination of our military personnel. Thank you Katie for your willingness to participate in such a meaningful way.

I don't get it, if the DOD is so wlling to hear us, why do the military doctors refuse to treat our Autistic son, or even look out for vaccine reactions on other kids?

It doesn't seem to me like they are so willing, and I am a military wife.

In all honesty, I was bracing myself for a barage of sarcasm. Instead I sit here amazed.

If the DOD has made this leap, is it naive to hope that the tide is turning? Hope. It's the thing that keeps autism parents going.

The DOD understands that a large percentage of the future defenders of the country are going to be disabled. It directly affects them, unlike the lap dogs of Pharma and Big Oil in our wonderful government. That's not to say the DOD is very efficient at solving the problem, but at least they are trying.

Maybe parents can sit on these panels at the DoD level (although we've never heard anything about this and we are a military family), but at the 'boots on the ground' level the military are not very good.
Sure, Tricare covers a certain amount of ABA (roughly half of what the AAP recommendation), but, their pediatricians are so ill-informed, obstructive and unhelpful that they actually do harm. We had to opt-out of the main insurance system to a co-pay system, just so that we don't have to deal with them.
Then, because of the lack of military doctors that 'can' diagnose autism, most people are referred out to civilian providers, but, when the diagnosis comes back, they don't call the families in and explain how they access their recommended therapy, since it's a double process of enrollment into 2 separate programs. In fact, most of them don't know themselves. Many families have no idea they can even get ABA therapy.

The military medical and assignment process has been criticized by their own leadership for failing to even do what's in their manual when it comes to assigning members to bases. Many families were assigned to locations at which there were no services for their children, or, like we experienced last year, they deny an assignment to an area that can support us (we won that argument).
But, when you're 3 weeks from being homeless and your husband assignment-less (since you're at a 1 yr educational assignment and you HAVE to leave the base) and the medical officer at the base you're supposed to be going to is not concerned enough to even call you back, oh, and you have a child with autism into the mix, from my standpoint, they have a lot of work to do.
Whilst I appreciate the gesture of the military allowing parents to have input on research, they would be better off actually educating their pediatricians and support staff and helping their families cope.

Now that DoD has figured out to follow "Congressionally mandated" autism research, maybe they will find a way to provide appropriate support to the military families already impacted by autism. Feel free to read the 2008 NDAA Sec 587. This was Congressionally mandated as well. Why hasn't it been implemented? Because of the price tag and because Congress isn't doing its due diligence on oversight. Don't drink the Kool-aid too fast Katie. DoD does some things very well...other things very poorly.

Let's start our own "War on Drugs"!

Ok now ..wait...what? Are you sure? Katie do you have a fever? Is it April Fool's Day?
Have I not had enough caffeine yet?

Need to absorb. Holy crap. Must think.... as soon as I wrap my mind around this I will be making calls to our beloved (NOT) politicians in Oklahoma.

Thanks Katie!