New Autism Safety Program from Autism Speaks - Take it for a Test Drive

The recession / Depression was the perfect opportunity for Autism Speaks to announce they were tightening their belt, reducing rent, salaries, and overhead. Putting genetic research on temporary hold and helping families dealing with Autism Directly.

Although I agree this is a valuable and much needed service with in the community, it seem disingenuous that they are using this to claim they are helping desperate families. Too little too late Autism speaks is losing families trust as fast as the Government and medical establishment

I’m curious–why do you say that Autism Speaks is losing family trust? I tried to follow your reasoning/logic used but I didn’t see the connection between what you were saying and lost trust.

One thing that I saw that would be very beneficial to caretakers (and even individuals with AS to fill out themselves) is an Emergency Form to hand to the 1st responders. It ahs a place for all basic information, including what would be needed if a person went missing, medications, common behaviors, places to avoid, etc. It’s not only good for in an emergency, but it’s a form I’d leave for the babysitter, too!

I think this would be one thing we could agree on, no matter who generated it. As much as there is things I do not like about Autism Speaks, there is a lot I do like and I give them a big E for effort on this one. No time is too late for something like this, although no one really needed Autism Speaks to do something like this in their own community but maybe the press about it will prompt families to help the emergency responders.

This is a great start, parents can print these out or make their own and go to their local police/ emergency agencies and see if they’re in need to train for this, and also some will keep on record if this phone number dials 911, info will pop up a child/ person with autism lives there which can be help if anyone needs to make that dreaded call.

This initiative didn’t come out of thin air, Tanner’s Dad and others. This has been 3 years in the making born of too many tragedies. A HUGE thanks to FedEx for funding the effort. If anyone, and I mean anyone, can help improve the site with links to resources or an idea to get more professional eyeballs on it, please advise via the contact link. No ego here folks, only safety for our loved ones.

Heather Autism Speaks was founded to create awareness and be a support for families. I was front and center during the early days and walks in multiple states. Then I started asking where the money was going. The trust issue comes up when families are on the verge of divorce, bankruptcy and suicide yet this organization continues to pour money into High priced NYC rent, Six digit salaries, and genetic research that will only lead to a test & abortions in the near future. The money needs to be redirected to families in need of therapy, repite, and treatments now. It is time for Autism Speaks to become Autism Action. If you are aware a child is drowning and do nothing it is call negligence. That is the trust issue we have here. If somebody is not aware of Autism by now they are not human.

I don’t think Autism Speaks ever was suppose to be for individual aide to families however I have seen grants here and there. One organization isn’t going to fix personal divorce, bankruptcy and suicide that any of us might face, nor families in need of therapy, repite, and treatments.

Autism Speaks does offer grants to support local projects for families living with autism. They’ve been active in advocating for insurance coverage, too.

The problems, IMHO, is that (1) they tend to show up and take over the work of local groups, sometimes steering projects in their own direction; (2) they are apparently unwilling to include people with autism in their organization at all; (3) they’ve recently taken a controversial turn toward research that relates to vaccines (something that some people object to highly).

I also find it a bit scary that one organization seems to have control, at one level or another of so very much of the autism-related money. There are AS folks on the boards and in decision making roles in US agencies and international policy making groups.

Lisa

Like I said, there’s things of Autism Speaks that I do not like just like but there’s things I don’t like about my friends, too. I don’t agree with every thing my friends do nor Autism Speaks. All of the negative off topic things presented here about Autism Speaks takes away from the main topic of Autism Safety Project. Anyone else could had created such a site than Autism Speaks but since they did, very few talk about that and how useful it can be to a community.

Lisa –

The Autism Safety Project did reach out and had extensive dialogue with and input from adults with autism. Some prominent self advocates, for reasons that elude me, chose not to participate in this initiative when offered an outstretched hand from AS. They wanted final editorial control over the product without spending a dime on it.

I think you confuse “taking over” with bringing needed scale and effectiveness to autism advocacy. I was involved in a number of small local organizations and recognized quickly that the absence of scale means the absence of effectiveness for people with autism.

Finally, I am agnostic on the vaccine issue but recognize that until transparent, conflict free research and an effective system of checks and balances exist between mandates of promotion and safety, public health will suffer and uptake rates will be sub-optimal. Clearly, a one size fits all approach is neither rational or desirable, given known and serious vaccine injury to certain vulnerable populations. Hep B for everyone at day 1? “Fast-tracked” Guardasil for all preteen girls? Idiocy, in my view.

I think it’s smart for AS to hedge it’s big bet on genetics with environmental research and like it or not, vaccines are in that buc,ket.

I thought it was a good idea, especially the forms for the family section. However, I also found the tips sketchy and frustrating. For example, the tip in the families section that says:

Have you contacted your local 911 call centers?

Well, no, I haven’t. I didn’t know this was an option. Also, how do I call the call center? Do I contact the 911 call center by calling 911 and speaking to whoever answers? Or do I find another way to contact the call center? After all, I understood that 911 was for current emergencies.

Additionally, all the links they provided were to high-level web sites, such as the Red Cross home page. How is it helpful to have to go to the Red Cross home page and root through the plethera of unrealted information that must be there until I find nuggets of information that apply to me?

It’s a good start, but I think they posted it prematurely.

Tia- Call your local non emergency police number and request that info is put into the 911 database re a disabled family member. They will get it.

Please send your comments, criticisms, and suggestions to the website in the “contact us” section…

It’s not “premature” (It’s been years in the making). Too many in our community have been injured (and worse) due to the lack of training in the first responder community but it’s admittedly a work in progress so your input is critical!

Actually, the Red Cross would be a good link for those who were effected by a disaster such as Katrina. Of the Family tab, there are 20 links all helpful besides the Red Cross. In this area, non of those links are high-level, they’re in 3 categories which are all good links for families. Even in the other area’s like fire fighters and so on, they really put together some good info.

As for 911, their computers keep a certain amount of info on record. Letting law enforcement know when that phone number dials 911, it will pop up on their screens a child or adult lives there with autism. Many people have been adding that info for years and it’s also a god idea for those little ones who like to play with the phone. More times than not, they push 911

Imagine the other day when they possibly found a cure for MS!
Exciting, but the thing they found was a rather simple solution.
Can we ask the same questions about autism?
Is it possibly that the brain may also be deprived of blood flow in another part of the brain.
Why don’t they take a look at this as a possibility?