well within the next few weeks Health and Human Services Secretary Robert F Kennedy Jr has pledged to announce a series of studies aimed at identifying environmental toxins he claims are responsible for a dramatic rise in autism among young kids in the US According to new CDC data about one in 31 kids in the country have been identified with autism spectrum disorder That number is even higher in New Jersey at one in every 29 children And while some of the comments made by Kennedy sparked outrage among the autism community for being insensitive or lacking evidence others rang true Patricia Miller chairs the New Jersey chapter of the National Council on Severe Autism which had a more nuanced take She joins me now Patricia Miller um great to speak with you about this I want to ask you just first because obviously the comments made by the health and human services secretary um got a lot of reaction um some good some bad How did you perceive um what he had to say about the autism community at large well um I think we're grateful that uh it puts severe and profound autism in the spotlight um very often the severe and profound part of the spectrum h doesn't have a voice because many of them are non-verbal and they're sort of forgotten about um when we talk about the autism spectrum disorder and so um we are front and center um I think that um we welcome you know the opportunity to um look into researching um environmental contributors and other potential causes but they must be pursued through rigorous scientific channels So I mean and I might not have this number exactly correct it's about 30% yes of folks within the autism community who have profound severe autism Um is he asking the right questions or looking to find the right answers when talking about environmental toxins um and talking about getting to what he says are factors of a preventable disorder i mean how does the council view that well the council are we're not scientists and so um what we would recommend is that they absolutely speak to Allison Singer from the Autism Science Foundation as they have done a lot of work in this area and actually have created a strategic plans that focuses research specifically on the needs of the severe community that we um absolutely support and um we have as a national council as well as the New Jersey chapter put the strategic plans in legislators hands in congressmen's hands in senators hands and we hope that the administration considers these research opportunities when they're looking to actually move forward with the research he is talking about So I mean you're a mom you have three kids Yes You have a son who has profound autism I mean when you're sitting there listening to this um what rang true for you and what did you feel was missing sure So what rang true is that this is hard But I think what was missing is just the human nature of these children They are our children They are the apples of our eye They walk in and they light up a room They are and John my son is 24 and he has severe autism And he you know he doesn't have language He can't read or write And as he becomes an adult he can't tell us if he has a headache or he's in pain And he can't tell us if someone's hurting him And so they don't experience the world the way a typical 24 year old does And however they absolutely continue to learn and can learn And we want to remember that the focus of what we need is to be able to create supports so that they continue to be successful and can learn What would your message be to the federal government um and where they need to set their focus so they definitely need to set their focus on not cutting Medicaid for the most vulnerable pu uh population Uh this population absolutely requires um you caregivers and families to have expanded access to housing to health care and support support services and that all comes through Medicaid and Medicare and uh social security Um we would love this administration to look at this as an opportunity to declare severe and profound autism as a public health emergency so that the funding and the research the clinical research can actually happen in the severe and profound population You know in the 1990s 95% of clinical research included the profound Today it is now less than 6% So this cohort is not being looked at It is not being looked at with variables that matter like adaptive skills like verbal skills You know there are all these areas that actually the research has to be sound and it has to be unbiased and it has to be done in the correct way and we do believe it will take time and it will take the right you know resources to be able to work Patricia Miller is the state chair for the New Jersey chapter of the National Council on Severe Autism Patricia thanks so much for your time Thank you