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Our Mission
Converging advocacy among autistics, families & professionals
Community resilence among parents & autistic self advocates
Joint learning & sharing among autistics, families & professionals
Ok so why did we create Viva KAI? Well, even with 18 years experience in the NHS across emergency ambulance services, Physician Associate and postgraduate teaching roles, I was fairly ignorant about autism. It was only after our 8 year old son Kai was diagnosed at 3, that we began to get a glimpse into a very different world. So, initially, Viva KAI was born out of our own need for guidance. And eventually, this led me at 49 years, to pursue an autism assessment for myself, which I currently still await.
What we quickly learned, is that public services are minimal, variable, and require an extremely resilient approach. Luckily, this is where my sometimes unhealthy obsessive streak, was able to come in very handy. You see, even though I've had a crash course in autism through my son, and maybe relevant personal lived experience, I knew this was still a limited perspective. So I started reading some of the medical literature, but I also listened to hundreds of autistic influencers. What struck me most, was the range of challenges and needs. There were so many verbally skilled, capable and often smart individuals. Yet, many felt abandoned in a world that seemed to misunderstand them. They described being rejected, bullied, treated like idiots and weirdos most of their life.
So, what started as a need to learn and support my son, became a mission to build resilience and unity, not just among islands of impressive self advocating autistics, but bringing those autistics together with extremely passionate parents and dedicated professionals.
Perhaps one thing that should unite all of us, is to know that autistic adults continue to be locked in 24/7 care institutions, many of which are not fit for purpose. These people have needs additional to being autistic, which "is hard enough" as one man told me. Adding in restricted communication and intellectual/learning disabilities, only adds to their overall isolation. Unsurprisingly, many die at a much younger age. So I ask you to join with me, for I can only do all I can, while I still can. And there are millions of people just like Kai. Too many are left to rot. I cannot accept this, can you? Long live Kai, because in some ways we are all KAI. Because all of us must have a right to Kommunication, And Independence. Thanks Paul
Viva KAI
"The World Health Organisation acknowledge that surveillance, research and support for autism, needs to significantly improve".