The national organization Autism Speaks is undergoing significant leadership changes, and like many, you've been critical of their operation in the past. What do you think should be their priority for 2016? What would be a measure of their success in evolving, in your opinion?
In my opinion, having wide and long experience of Autism organisations in Europe and elsewhere, Autism Speaks started with good intentions, but lacked to find expert people with REAL science knowledge of the subject, educationally or clinically.
It began from people with Autistic family members, which is why their intention was and still is "to find a cure"
There is no cure. Autism is NOT a disease, it is heritable but not contagious.
They misunderstood or fail to understand that it is a complex "Whole body condition" affecting not only the brain structure and chemical interactions, but every part of the body, which is why it comes with well-understood medical co-mobidities, like Crohn's Disease, Caeliac Disease food intolerances, Sensory issues and Epilepsy, among many others.
Early diagnosis and intervention are crucial to positive day-to-day outcomes.
Later, as it grew with donations, it became a self-serving, self-congratulatory Corporate entity which did not support research and did not look at the latest science and genetic data from around the world-it had/has the money to support such projects, but did not, which is why it is so often rightly criticised globally.
Gala events and celebrity names have their place in raising awareness and money and are to be applauded for that. But without being followed up by grassroots help only insult struggling families and those of us, like myself, who are Autistic.