My take on Autism, Aspergers and Autism Speaks

I have some views on Autism Speaks that will probably bring me in conflict with the rest of the Asperger community.

I am on the spectrum, my wife is on the spectrum and my son got a double-dose from both of us. I surely do not think that there is something wrong with me, or my wife or my son, however I know that there are things in ourselves that we want to change, like making friends, or being less uncomfortable in busy shopping centers.

 And I do not deny the parents of Autistic children the hope that something will be discovered to make their child better, or even just allow them function better. We can talk and relate, but how do you care for a non-communicative, severely autistic child? How do you know what is wrong? How do you know what is bothering him?

Just because of that I support Autism research, not that I think there is something wrong with us, but to help the parents that do not know which way to turn.

I follow several Autism pages and the one I found to be quite frank and honest is the Autism Daddy blog. He is honest in what he writes and feels.Who am I, or all the others to deny them hope?

Now, Autism Speaks... 
Before we can criticize them, we need to understand the nature and purpose of the organization. I have taken the part below from the 2012 Autism Speaks Audit report.

NATURE OF ORGANIZATION 
Autism Speaks, Inc. (AS) is a not-for-profit corporation formed in 2005 that is dedicated to increasing awareness about the growing autism health crisis and raising funds for critical autism research. AS is committed to aggressively funding global biomedical research into causes, prevention, treatments and cure for autism; raising public awareness about autism and its effects on individuals, families and society; and bringing hope to all who deal with the hardships of the disorder. AS obtains financial support from the public via walks, special/community events and general contributions and government grants. Canadian operations are incorporated under Canadian law as a separate entity (Autism Speaks Canada), which is controlled by AS. Advancing Futures for Adults with Autism AFAA), is a not-for-profit corporation formed in the United States and is controlled by AS. Contributions to AFAA are classified as temporarily restricted net assets until used for their stated purpose. 
In October 2012, AS established Delivering Scientific Innovation for Autism (DELSIA) as a not-for-profit affiliate. DELSIA was created as an innovative funding vehicle that works to improve outcomes for individuals with autism by ensuring scientific breakthroughs are developed into products that improve the quality of life and health for individuals with autism. DELSIA’s mission is to serve as a catalyst by facilitating and accelerating the delivery of products that can improve the health and quality of life for individuals with autism. 
The financial statements of Autism Speaks Canada, AFAA and DELSIA have been included in the accompanying consolidated financial statements. 

All interorganizational transactions have been eliminated.

Autism Speaks is there to raise awareness and fund autism research.In order to do that, they have to raise funds. To effectively raise funds they need to appeal to the government, corporate and public emotions, and what better way to do it than to show struggling children. And this is where Autism Speaks steps on toes. Autism is being generalized and stereotypes formed. 

So, when I tell someone that I have Aspergers or HFA or that am on the Autism spectrum, they get confused because the first thing they think about is Rain Man, or Sheldon from "The Big Bang Theory", or the scary stories of severely autistic people, or the latest media trend that links autistic people to mass shootings in America. And I am not like that, well the closest I relate to is Sheldon, to be honest.

I am not saying it is right, but how else will they raise funds? Corporates and individuals will not easily give money for struggling adults, what are their problem, they can work for themselves, or why are they not places in a home?

The fact is, there are not enough homes and facilities, what will happen to a severely autistic child or adult when his parents or caregivers die? There are successful Aspies and HFA individuals, but what about the rest? What about those Aspies that, because of financial, or cultural, or whatever reason, did not have the opportunity to do something and become self-sufficient. We do not see them and we do not hear about them because they are not in the main stream media and I believe most of them are not exposed to social media.

I read that in South Africa 1 in 150 children are diagnosed with being on the Autism Spectrum, and in America it is 1 in 86 children, yet in South Africa, in the province I live only 16% of the diagnosed cases are attending school. (I could not find the statistics for the United States) Where are the rest, what is happening to them and where are they going to end up? 
Surely this requires intervention and research? Surely research is required into the origin and cause of autism? 

It is estimated that an individual on the Autism Spectrum, receiving intervention, is costing a family in the order of $60,000 per annum. That is $5,000 per month on average. What about families that do not earn that much money? What are they doing, how are they coping? Are they going to lock their children in a basement? 

Let us be realistic now, Aspergers and Autism Spectrum Disorder is a spectrum disorder, not all of us are at the same place on the spectrum, therefore we cannot the stereotyped. Those with more severe disabilities need care, need intervention and need understanding.

That is why I support Autism research and appreciate the bit of research funding that Autism Speaks are doing.

Aspies, get a grip, stop protesting and let us do something to help our fellow brothers and sisters!