First, let me clearly say that this blog is only about the services especially the private insurance mandates or government affairs in Autism Speaks.
I have no issues with their science or research dept, in fact, Dr. Dawson, Mr Rosanoff and Mark R, their previous president whom I met at White House Autism Conference (I know it is still surreal they would invite me there) have been extremely sincere & generous in supporting Somali autism in Minnesota. They contributed $100,000 to the Somali Autism Surveillance study now going on at university of Minnesota. They offer their technical assistance monthly. Dr. Dawson is one of the kindest and inclusive autism researchers in the world. I would say she is a guru in autism research which dates back years and years, yet Dr. Dawson remains humble and approachable – rare combination.
Now, let’s talk about their obsession with insurance companies. I understand that it is good to help children that have state regulated private insurance, but what AS does is come to a state it knows nothing about. They partner with usually the most arrogant and expensive ABA providers and push their agenda. I think this kind of advocacy has not only created disparity because it leaves low income/poor families, but it is very dangerous and disturbing in many levels.
My advice would be if you are going to a state where there is diverse population of autism families, try to lose the attitude and engage in that community. Maybe, try to send people of color so that they have something in common with the autism community. Try to meet and hear everyone’s views – it is called stake holder input. Practice that AS, it might suit you good.
In Minnesota, they keep sending village idiots that have no idea except read from a script and push unproven and expensive legislation that leaves everyone except 30% of children whose parents work for a small company. I kid you not, they don’t have access to any information logical, just keep saying the same sentence and hope it sticks with some state legislator who has heard too many bills and had a long day.
I for one am tired of their tactics. When they come to IACC or any national Autism conference/meeting, they are about diversity, decreasing disparity for children of color, blah – blah. Then they show up in Minn and it is like a hungry shark in a beach.
I hope our state does not think AS has the answers and takes a look at autism coverage in a holistic, inclusive, cost effective and science based manner that supports all children across the spectrum and across the lifespan. Autism is a lifelong disorder, and what AS is doing is trying to meet some silly quota that is short sided and in a way arrogant and ignorant about the reality of autism in the real world and how real families of all socioeconomic and racial families deal with it.
Thanks!
Idil – Somali Autism Mom