What about doing a study on children who have RECOVERED from autism?

Find out what's working! Kids ARE getting better and leading normal lives. That's got to be more cost effective for our country.

Thanks for all you do.

Much better funding of high quality adult services especially community based services for those severely afflicted that do not respond to treatment or for those that we have been too late to treat.

In Illinois there is a n institutional center called Howe in Tinley Park. The disabled are being abused and dying and our State officials are still funding this place even though Federal funding has been stopped due to abuse. This should not be allowed. These poor disabled people are being mistreated. The local newspapers have written to close the place, but they are still open and our State officials let it go on. It is a disgrace. More than 25 deaths due to abuse or neglect have occured at this place. Only some are autistic, but this is an outrage. The President needs to hear these stories.

Biomedical treatments should be covered by insurance, and biomedical interventions should be included in medical school, on the aap website, on the cdc website, and on the nih website.

We need medical coverage for treatment given by DAN doctors. Our children can heal if we can treat them with the DAN protocols . For many parents, the cost for DAN treatments are too costly and these children arent given a chance. Another concern is residential facilities for adults with autism. There arent nearly enough in this country. Doesnt the government have a responsibility to help these people.

I know I am late in commenting but we need:
* support for biomedical intervention especially in the form of coverage for supplement deemed medically necessary by a doctor.
*better labeling of products containing gluten and casein.
*better training of public servants (police, fire, etc. in recognizing and assisting those with ASD.
*support for adults with ASD in employment, housing and independent living.

Thanks for offering us the chance to contribute.

Institute a version of the "Amber Alert" system for our children - and affected adults - who wander.

Expand Project Lifesaver to a national basis (ie. every city, town, village, etc.). Not just a mandate that it be done, but have funding provided as well.

Extend ECHO program benefits to retired military servicemembers (the last I heard this program was only for active duty servicemembers), and if the requirement still exists that the ABA therapist working with the affected child must have a BCBA, remove that requirement. Requiring a BCBA is a very good way to get out of reimbursing for ABA.

Require all first responders to be trained in how to effectively deal with children and adults who have autism.

Establish programs for our children for when they "age out" of what the school system provides.

Regarding insurance mandates, do not let there be a requirement that the ABA program must be supervised by a mental health professional (psychologist or psychiatrist) in order for the ABA therapy to be reimbursed. Also, do not let there be a requirement that the therapist must be BCBA.

With one swipe of his pen and at no cost to the American taxpayer, President Obama can effectively curb the current autism epidemic and save the country billions of dollars by eliminating future ASD cases. I suggest that the President be advised to take the following actions:

1) Until the precise causes of ASD are fully understood, I would advise the President that it would be prudent for him to direct the CDC to recommend a childhood vaccination schedule based on the 1983 vaccination schedule; i.e., the vaccination schedule in use before the rate of autism began to so drastically increase;

2) The CDC should recommend that doctors test key vitamin levels, e.g., oil-based vitamin A and vitamin D levels, as part of the well-baby checkup process and prior to every inoculation. If the vitamin levels are low, doctors should advise parents that no additional vaccines should be given until a subsequent well-baby vitamin level test indicates that the vitamin levels have been restored; and

3) The CDC should recommend that women of child-bearing age have their body’s heavy metal load tested on a regular basis and prior to becoming pregnant, e.g., using a biomarker test such as a porphyrin test. If the heavy metal load is determined to be high, a potential mother should be advised not to become pregnant until her heavy metal load is decreased. An expecting mother should be advised regarding how to safely reduce her heavy metal load, and should be advised to delay vaccination of her child until the child’s heavy metal load is decreased.

Chelation and all other biomed needs to be put into main stream. It works often enough and well enough and really even beats most heart and cancer treatments in terms of benifits for it to be relegated to fringes of medicine. Best of all, it helps a child, and its benifits will pay off for decaded per child, not a older person.
Education for the kids needs to be streamlined, standards set nationally and public schools cannot be allowed to drag their feet. In fact autism diagnosis should entitle the child to a school grant which can be given to the school that best caters to the child's needs. ABA ought to be a rule as should ESY, strict after school where they get the kids playing in a controlled environment as well as anything else the kids and parents need in terms of monetary and other support. Spend the $ now and watch these kids turn into super citizens, or scrimp now, and take care of them as they are wards of the state all their life.
Vaccine safety is an oxymoron. Needs to be defined as such.
Thanks.
Srinath.

Push for support/funding for various teaching modalities; not just ABA. Behavioral is fine for some kids, but not others. We needed a relationship based modality; Son-Rise from the Autism Treatment Center of America: http://www.autismtreatmentcenter.org/ Our kids are not one treatment fits all, and parents should be able to choose what works best for there individual child.

Establish a national physician education program so every state has doctors who know how to medically treat children on the autism spectrum. That is, actually running some labs and then understanding what they mean, prescribing treatments and following up on the progress. A big step up from "here's your script, goodbye."

What about some kind of program to help single parents of special needs kids financially? Some of us have no one to watch our kids so we can work full time and so are forced to live WELL BELOW the poverty level. We can barely afford to keep our basic bills paid and obviously cannot afford the treatments, special diets, etc. even if they are Dr. prescribed, Medicaid simply does not pay for the things these kids REALLY NEED

study the 5,000 injured group we,they already have. vs. a unvaccinated healthy group..study the cluster groups in nj and the somalia group of affected babies.. look at the kids that have recovered and the ones who have not..do the science,, find out what the political , medical, ramifications of living in a global society really mean, seems like global economy is equal to our children being acceptable damage.. candace

UPDATE:

Sent another e-mail to the White House about an hour ago giving them a "head's up" on Jim's Huffington Post piece and our current "brainstorming" session:

"Also, I've asked our community to submit their thoughts on key issues they feel the White House should address regarding the current autism crisis. Once I compile them, I'll send the new, updated list to you for your review."

They've responded back and are expecting a revised list within the next few days!!

Please keep the suggestions coming.

As the saying goes, "Two heads are better than one and in this case, multiple heads are even better!" ;-)

Kelli

I'd like to see support for a national insurance mandate for autism treatment modeled after one of the states that did it right- no loopholes. Our kids are sick and it's time that insurance companies stop denying claims for medical treatments for our sick kids!

The one thing that most needs doing is a vaccinated versus never vaccinated study, but it needs to be done in a very open fashion by independent researchers. That is the only research that is really going to answer the question of whether having your child fully vaccinated is a good idea, or not.

I agree with the previous poster that there needs to be individual freedom to make medical choices for oneself and one's children--NOT any limiting of choices to "evidence-based" or "standards of care" selected by bureaucrats, "experts," "advisory panels," insurance companies, or anyone else.

Too many kids have improved health from non-standard treatments. So there needs to be lots of effort put forth to insure that alternative treatments and helpful OTC supplements continue to be available to those who wish to use them.

Somehow the FDA needs to be revamped to get rid of the influence of pharma, so that dangerous drugs aren't approved/recommended as treatments, and to prevent the agency from making important supplements unavailable OTC, for any reason. Recent reports indicate the FDA is currently removing OTC access to certain forms of B vitamins as well as DMSA. Both are used widely, and effectively, if parent reports are accurate, to help metal-toxic kids get better. This seems very oddly coincidental to me. Hmm. What's next? Alpha lipoic acid? Vitamin C?

Whether or not CODEX worries are real, there needs to be work to guarantee that all people can continue to obtain vitamin, mineral, enzyme, and herbal supplements in potentially useful concentrations, OTC.

If we aren't free to make health/medical choices for ourselves, we are not a free people and this is not a free country.

It would be better if you ask Jenny McCarthy to help you come up with a list. She gets to the meat of the matter really quick. Such as - the problems with the vaccines. Such as - make them green. Such as - too many too soon.

In addition, I am not sure why Generation Rescue needs to tell them who to appoint or what to do or how to do it. Shouldn't that come later, after we tell them what the problem really is, at the grassroots level? Right now, the White House thinks like the CDC, that diseases are a plane ride away (heard the President on the Europe trip). There is much they do not know and I am unsure who is supposed to be telling them.

Why not ask Dr. Bernadine Healey to become part of this project? She has the credentials and has an open mind about causality.

Review of recently passed Autism insurance and service bills. I have found many have more holes than a screen door. They make the politicians feel good and we always get a clip of a thankful crying mother but when it comes time for a claim or service, the support is not there. We need a White House policy directive that gets us all on the same page.

Also I feel very strongly that the have and have not society is getting greater. We need to have a national ABA initiative.

We Also need a rural initiative for services. Families without means to get to a metro area are being left behind on services. I know city folks are being neglected as well but it seems that funding is directed there first.