An Autism Mother Rages: This is Going to Cost a Fortune

I love the check-out clerks at our local Associated Supermarket in Long Beach, New York. But they'd probably be the first to admit that they are not rocket scientists or medical geniuses - not yet anyway. Some of them are very young. Still, even faced with a pile of groceries to pack, they can identify autism. My husband was on line a few months ago when one of the clerks waved to her "normal," teenage boyfriend outside and she said to my husband about her boyfriend, "He's a retard." "Excuse me," my husband replied. "I have a son who is mentally disabled." "I know Danny," she replied triumphantly. Then she wagged her finger at my husband. "He's not retarded. He's autistic." She is right. There is a difference. Autism is a neurobiological affliction that in many cases prevents individuals from showing what they know; it can make it impossible for them to talk. Sometimes this leads to an additional diagnosis of mental retardation but like most things about autism I am not at all sure if that's the right conclusion to reach. There are days when I think what we don't know about autism could fill a million grocery carts. Neurobiological? Maybe? It could also, in a lot of individuals, be the result of poison. There is ample evidence out there - although don't have a discussion with anyone from Merck about this - that the extraordinary autism epidemic which has been gradually exploding since 1990 was caused by a toxic mercury preservative in vaccines. This much, though, is certain: Everybody now seems to have heard about autism. Most of it from a close perspective. Almost everyone you talk to seems to know someone whose kid has it and even people who don't can quote the extraordinary current rate of diagnosis: One in 150. A Columbia psychiatrist who testified at a New York State Legislative hearing earlier this month, called autism the "fastest evolving disorder in all of medical science." (He also claimed that it might not be an epidemic; that it might be a case in past years of people "hiding in plain sight," an explanation that I don't buy for a second. Try hiding one autistic person "in plain sight' and you'll see what I mean). This much is also certain: With these numbers, autism is going to cost a fortune -- and the schools and governments of our country, of our world, are far from ready to pay for it. They are also far from understanding that the fortune they will need to spend has to be spent wisely. In preparation. Not in reaction. Cynics might say that New York State hearing earlier this month - soberly entitled "On the Rising Rates of Autism" was held merely in reaction to the recent alleged manslaughter of Jonathan Carey, a 13-year-old boy with autism at the hands of aides hired by the state institution where he lived. Reaction after the fact. Harvey Weisenberg is an Assemblyman whom I am proud to say represents all of us in Long Beach, New York, including my 19-year-old, autistic, nonverbal son Daniel Mulvaney. Harvey - which is what we all call him here at the beach - was on the Carey case a year ago, when Jonathan was taken out of another facility, a private school where he had been abused. Jonathan's parents tried to get information about what happened and were stopped by something masquerading as a privacy law. So Harvey introduced a bill to open those records to parents. If the parents knew more about why their son was abused they might be able to stop it the next time. Knowledge is power. "Jonathan's Law," passed in the state Assembly but not the Senate. Now, of course, it is fast-tracked. Reactive - and reactive after a death. As far as our family is concerned, Harvey is the leader when it comes to legislative action for disabilities. And, true to form, at that hearing last week he made it clear he knows what autism will cost. "We have to have resources," he said. "We have to have training." He also wants to stop mandatory double shifts at state institutions, which are, in effect, a way to save money. And not a very good one. Pay workers very little to do the Herculean job of taking care of kids with autism and, then, to make ends meet they have to work more hours than any human being can. I am so afraid that when the Jonathan Carey case goes to trial we will find that his death was caused by a worker who snapped. Our son has always lived at home and we hope he will until we find a suitable group home. Unlike Jonathan Carey he was, at nine, long toilet-trained, more or less, although some days are still better than others. So I guess you could say keeping him home took luck. With autism, toilet training is often nothing more than luck. It also took a lot of money. To retain our sanity and, more important, the sanity of our typical younger son, we have had to supplement the considerable amount our school district spends with at least $500,000 over the past fourteen years. It went to therapists and aides and doctors and medicine. And to replace broken things such as walls, couches and coats (five this winter), things that get messed up in the course of what are euphemistically called autistic "behaviors. " Mark van Voorst the CEO of Lifespire, Inc., a 55-year-old not-for-profit organization that each day serves 5000 developmentally disabled individuals in New York and New Jersey - and a man with 29 years of experience in the field - also spoke at that legislative hearing and reported that it now costs Lifespire almost $200,000 a year to provide day and residential services to an individual with "a high level of need." He continued: "If we now project these figures over the lifetime of an individual who needs ongoing supports and services (between the ages of 23 and 66 = 43 years) and build in an annual increase of costs of 3% the total cost rises dramatically." Over 43 years, he said, it would cost more than $17 million to care for that individual. "Unfortunately the funds allocated by the legislature are still not enough to allow us to attract and retain a skilled work force," van Voorst added. "Unless we are in a position to both attract new staff while at the same time are given the dollars to retain our existing staff, the wave of individuals diagnosed with autism which will begin to spill over into the supports and services within the 'adult world,' will simply overwhelm the provider system and will have disastrous consequences for an entire generation of children and their families." Robert Krakow is an attorney and the chairman of the board of Lifespire Inc., which was started by his uncle. As part of a horrific coincidence, his son, now seven, became autistic at two and does not speak. Krakow is also among those parent-advocates who believe his child was injured, not by fate but by Mercury -- in his son's case a flu shot that caused a dreadful regression. As one who has seen a child regress and can't stop it, I can only say this "You don't want to watch it." Krakow makes the point - and I think it's an excellent one - that if we go about finding the cause of autism in a smart way, we might not have to spend all this money. But meanwhile we do. "The numbers are shocking," Krakow says. "Legislators and other government officials have no idea. They have no sense of urgency." Read about a package of bills New Jersey's State Assembly is proposing from the New York Times