What parents should know about Autism

>>> on this fifth anniversary of world autism awareness day , there is more reason than ever for alarm. according to the cdc, one in 88 children has autism , a 23% increase in the past two years alone. a 78% rise in the past five years. it is certainly reason to pay attention . and we are. joining us now bob and suzanne wright, founders of autism speaks , the nation's largest advocacy organization. it's great to see you again, suzanne and bob. we know your grandson was diagnosed with autism . so you were arkted personally and then really began this crusade, personal, national crusade tomb try to deal with the problem and bring hip to the families. bob, what do these new statistics from the cdc tell you?

>> well, they kind of tell us what we kind of already know. one in 88, one in 54 boys is at a significant increase from the numbers they had the last two years but still not getting to where korea that is probably the gold standard for this kind of examination is one in 37, one in 27 boys. my guess is we'll get there with the cdc but it's going to take several years because they have to mod ni the way they do it. it's a terribly difficult discussion because it's so prevalent and it's so heartbreaking for these families most of whom have no insurance or reimbursement. they're out of pocket from 25,000 to $40,000 a year. they lose income because taking care of the kids could be anywhere from 25 to 30. this is america's most expensive bad luck disease condition. and it's unlike everything else you know. we joke and say you know, we want parity with knees. the knee is -- there are thousands of doctors working on knees. all kinds of work has been done on knees and none of that has been done for autism . we don't have the same support and insurance is beautiful. if you have a knee problem, you can go anywhere, any hospital they'll cake care of it right away. if you have autism , you're not going to get any treatment like that. we're very concerned about the affordable care act because it's now going to the states. and they recalled essential health benefits that are supposed to be in every one of the insurance policies . i'm getting extremely worried that's not going to be the case with autism . that's another issue we very to deal with. last comment i'll make is this is a generational problem. ewinger people under 25, they seem to be well aware of autism . they're not concerned about you know, the social aspect of it. they're concerned about the care, concerned about treatment. they want to know who should pay for this and you know, older generations, people like myself are much more casual about it. it's somebody else's problem. we don't have to add this to our issues, that sort of a thing. i don't think i have 25 years to go on this to bring these twos generations together. so suzanne and i are going to try our best to do this right now.

>> you are doing amazing work, both of you. suzanne , the awareness, i've got my blue autism speaks button on today.

>> thank you for wearing that, thank you.

>> you have really brought this to the fore. it isn't we in the boomer generation have to be more concerned. we have to look to the generations to come. what about the impact on families?

>> it's huge. the impact on families is heartbreaking. i know it from my own experience and we're able to afford a lot of things that families aren't. we just came from lighting up the empire state building , and we had the military families there that i had on the intrepid on sunday. we had a big autism salutes military families. the heart break that i have and all of us have is nothing compared i think to the military families diagnosed with autism that are overseas, they come back, they're injured, they have to retire and have no more benefits for autism . it breaks my heart. so we are joining forces with the military to make sure that they get the rights, the services, the treatments, everything that they need. and they were with us when we lit the empire state building . we're going to join forces make sure that this happens for our military.

>> a command sergeant major in the marine corps , the highest rank of noncommissioned officers in the marine corps . he's responsible for thousands of marines in afghanistan, and he comes home and he has an autistic child. i said to the group, i said you know, he's responsible for our children. and our young people that he has under his command. and who is responsible for taking care of his little girl when he comes home and he's got $5,000, $10,000, $20,000 worth of bills? that's the issue we're trying to deal with.

>> the annual cost is estimated to be $137 billion. untreated.

>> you know, andrea, i want to tell you, that number is mostly all born by families. it's not -- that's not public money going -- if you divide that by the number of autistic people, it's $57,000 a person. you can spend $57,000 in washington, d.c. in a year real easily because it's both the loss of income and the actual cost of services. so nobody else has that problem. that's a real issue. when you get into the sort of thing, that's $136 billion, mostly covered by families themselves.

>> all right. what about the stigma attached and the bullying that a lot of these children experience because they can't communicate the way other children communicate and they have other behaviors that sometimes might seem a little bit odd?

>> well, i'm hoping with autism speaks awareness campaign that's coming up in about $300 million with the ad council and bbd & o, we have managed to take away a lot of that stigma. my grandson who is right here with us tonight whose brother has it'stism is not ashamed at all to say on the playground, my brother has autism . more people are able do that and come out and be fine about it, just like remember aids, nobody wanted to talk about aids or breast cancer . i think when it comes to children, they don't have a voice. so we as adults we have to speak for those children especially children with autism in the families because they do not have a voice. until autism speaks got on radar, i was still amazed, bob was still at nbc at the time. you starred the hidden epidemic of autism . now we have to continue to get the things we need for our community.

>> lastly i'd say that the medical community has got to come out. they're so quiet. they should be screaming about this saying this needs to be addressed. the accessory organizations, they should be out here. i feel like we're doing the work of organizations that should have been out ahead of us years and years ago. they are so reluctant to say anything. i can't believe it given the epidemic aspect of what we're dealing with, where are they?

>> that is the question. thank you so much, bob and suzanne . you know we love you.

>> we love you too.

>> there is a nation of children and parents grateful to you, and the work continues.

>> thank you.

>> thank you so very much.

>> thank you very much.