Not surprisingly, Autism Speaks has very quickly become the largest Autism organization in the U.S. The organization has the largest fundraising capacity and far reaching advertising ability of any Autism Organization in the world. Why is this not surprising? Because the founders of this group are none other than the President of NBC and his wife, motivated by the diagnosis of their own Grandson with Autism.
The disappointment in this new and powerful organization is the direction they decided to go with their goals and fundraising efforts. They are doing what so many organizations have already done and continue to do, raise money for 'research'. The unfortunate part of this is that ARI (Autism Research Institute) was already doing this and so was the M.I.N.D. Institute and so was N.A.A.R. an offshoot of CAN (Cure Autism Now). So, research into Autism was not really the most needed function of a new non-profit here in the U.S. What is really needed, and does not exist in any really functional form, is help for the already existing hundreds of thousands of children already affected by Autism.
When I first heard about the diagnosis of their Grandson, I guess I knew they would start some kind of an Autism non-profit. I was giddy with anticipation that finally here was a group, started by people with far-reaching connections, the potential to earn huge sums of money that could actually help people dealing with the affliction of Autism today. I was crushed when I heard that they would be just yet another 'research' funder. We still have hundreds of thousands of children being written off as expendable.
An organization with the capabilities of Autism Speaks, could have made such a difference in the real lives of people living with Autism. Frankly, we have all seen too much from organizations such as the American Cancer Society, the American Diabetes Society, ad nauseum that all cajole us to come out and "WALK FOR A CURE", and no cures seem to be forthcoming, and most certainly not in our lifetime.
We all also know that the primary funders of these organizations are pharmaceutical companies that by their own admissions, are not looking for a "cure", but simply more and more new and potent drugs to keep you alive a 'little longer' or maintain you on those drugs for life. There is no profit in a 'cure'. Those independent researchers that may be looking for a real cure are simply not funded by these national organizations because the pharmaceutical boards have the final veto power over who is funded. Cures are counter-productive to the goals of the pharmaceutical companies.
I will use my state of Oregon as an example. Here in Oregon there is no meaningful nor affective services offered to families. Doctors are uneducated in the newest advances in biological treatments, and really have no idea where to steer parents that have just received a diagnosis for their child. Our schools, like in other states were ill prepared for our current epidemic and are overwhelmed, undertrained, and simply looking for ways to cut costs to give all autistic children something, even if it's worthless and ineffective, which is what is happening. Parents are left to investigate on their own, if they have the initiative. Many parents simply accept their 'fate' and leave it to the schools to offer whatever services they may offer. Their children will never 'catch-up' with their peers and their predicted outcome will not change.
Some parents turn to research, including the internet and are inundated with stories and hundreds of Autism organizations formed simply to 'inform' or 'educate', at least from their take of the issue. If the parents are educated and truly savy with their research they find the most mainstream programs that are truly making a difference in the outcome of children with Autism, only to find that the treatment they now seek is financially out of their reach. Some will be stripped of what finances they did have by charlatans and hoaxes willing to take every last dime of a desperate family looking to simply help their own child.
A good ABA program, directed by a Board Certified Behavior Analyst, a trained staff of therapists, offering the recommended 40 hours a week of therapy would run a family anywheres from $40,000.00 a year to $60,000.00. If your family's yearly income is less than that, your kid is just 'tough-out-of-luck'. That is the sad reality of most Autism Treatment. It is reserved primarily for 'the rich' or doggedly determined and creative. Some families mortgage their house, their retirement, their futures to provide this treatment. Which means we may not have to support their child for a lifetime, but we will now need to take care of the parents, that otherwise would have been financially secure. This is where the most help is and has been needed for some time. And, to truly make a difference, only an organization with the potential size, connections, and earning potential of Autism Speaks could tackle this immense problem on a national scale.
My guess is that the little grandson of the president of NBC is receiving 40 hours a week of ABA, probably directed by one of the most renowned and prominent ABA providers in the U.S., and probably was never put on any sort of a 'waiting list' to gain access to that provider. That is great for him, and will probably make a huge difference in his outcome in life. It is a mystery to me how that didn't bring them to the revelation that it is probably children here and now, living with Autism, that need the most help.
I picture regional centers providing outreach and providers to families in every state in the U.S. I pictured 'scholarships' to help families in more remote areas get access to life saving therapy. I pictured teams of ABA providers helping many families at once instead of just for a single family, cutting costs and overhead. I pictured education and literature to educate medical providers about where to steer parents for the most effective intervention available to Autistic children and their families. Perhaps with this kind of support more than 2% of Autistic children will receive life-changing therapy and state-of-the-art biological interventions, including chelation if necessary.
As it is now, I see Autism Speaks as just another fund raiser, going through the motions of supporting 'the cause', a 'feel-good' organization that will never have a serious affect on the children with Autism that are alive today. Perhaps in twenty years they will have developed some new anti-psychotic drugs or anti-depressant to drug my kid into not looking autistic, but will never touch the underlying reasons for Autism or treat the underlying causes or symptoms of Autism. ABA on the other hand has brought my child out of a darkness, into a world of communication, friendships, logical thinking, full functionality in the typical world, while never ever using any drugs, and obtaining a new diagnosis of "indistinguishable from her peers". This should be the noble goal of any organization wanting to change the face of Autism. This is the one thing no organization is offering.
State or local organizations supporting these efforts can only afford to offer information, advice, moral support, and their own experience. There is nothing out there to offer services, scholarships, real hands on therapy...unless you have a whole lot of money. In my opinion Autism Speaks has been the biggest disappointment since I was thrown under this speeding Train called Autism. The glittering generalities and empty promises pour forth, and the fundraising walks on tracks in cities throughout the U.S. are under way, pouring forth huge sums of money that will never 'touch' a child that is today currently suffering from Autism.
I have lost hope for the hundreds of children I see around me every day, in my own local area that were left behind, while my daughter 'recovered' from Autism. The others never had a chance, and they are not going to have one any time soon. In another 10 years, 1 in every 166 children is going to swell into the social security system, right along with the baby-boomers, and it will bankrupt an already shaky system. The difference is these kids never were able to contribute to the system before using their funds. And all, because no one took a step to change their outcomes, and try to make a difference in their outcomes.
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