Kim Wombles

Recently, two posts of Lisa Jo Rudy’s at About.com have garnered the disdain of loyal AoA (Age of Autism blog) readers. Anne Dachel felt strongly enough to write a lengthy post about the upcoming tsunami (The AoAites are nothing if not consistent in their descriptors) and Rudy’s questions concerning whether working towards making our children normal is a worthwhile goal and the funding of our children’s education and therapies. Raising questions can be a precarious thing to do; there’s the appearance that the questions raised reflect the opinions of the person who raised the questions in the first place, leaving one vulnerable to attack, while also leaving one open to say, but hey, they were just questions--think Handley and Sullivangate; Stagliano assured facebook fans that’s all he was doing was asking questions; no harm, no foul, right? Normalcy is a generalized, meaningless concept and the question is essentially irrelevant. Rudy’s posts frequently take this question approach as a means to foster exchange, ideally an exchange of ideas, even if it all too often falters into the same half dozen folks having to bring it all back around to the whole vaccine question. Handley’s “questions” are of an entirely different sort and are not meant to invite discourse so much as diatribes. But back to the question of normalcy and its irrelevance: educators, therapists and parents work towards functionality for children with disabilities; it seems obvious that there can be no question as to whether that is something that should be worked towards. Dachel ignored the normalcy post, despite linking to it, and refers specifically to Rudy’s followup post on resources and education of our special needs children. Rudy writes, “In a world of limited resources and societal needs, logic dictates that the needs of the many should outweigh the needs of the few.” Not to nitpick, and I always appreciate a Star Trek reference, I quibble with the entire concept: limited resources? A more accurate statement would be to note the misallocation of resources. There’s no evidence that resources within themselves are limited. Rather, our society and government instead focus resources on things that matter not one bit in the grand scheme of things: millions wasted on sports programs, as one example. Yes, Spock says that logic puts the needs of the many over the needs of the few, but there’s many reasons to argue that our society consistently puts the needs of the few above the needs of the many: again, sports programs as an example. Continuing her post, Rudy adds, “But because our world is NOT logical, but instead is variously self-interested, compassionate and personal, the needs of the few (or the one) very often seem to outweigh the needs the many.” Everyone acts out of self-interest, but some manage to overcome that self-absorption and act for the greater good. I suppose I could agree that the needs of the few outweigh the needs of the many (see the sports programs at the expense of general education ), but the point Rudy appears to be trying to raise is that when the state supports the education of our special needs children, it is putting their needs above society’s. This is not the case. The earlier the intervention the better the outcome. Educating our special needs children and working towards increased functionality now will save society a great deal in the long run. Less money will be spent in the long term care if more children are educated and achieve a functional level that allows them to earn their own income instead of the state having to support them fully. Dachel and the various commenters at AoA really didn’t like the thrust of Rudy’s questions. While Dachel mainly confined herself to her long, drawn out tsunami regurgitations, various commenters referred to Rudy as a Nazi. Now, to be fair, these are the commenters who are sure there’s a eugenics program in place through the vaccine program, so we can dismiss their comments as those folks who don’t deserve much attention or much in the way of respect for their opinions. Rudy concluded her paragraph on logic and needs with this thought: “Autism raises this issue over and over again, in many different ways - challenging our values, our expectations and our limits.” Dachel responds to Rudy’s post, in part agreeing, “The other question is one that’s going to have deep implications in the not-too-distant future. Right now it involves schools. Autistic kids cost a lot more to educate and with almost a million of these students in the U.S., all schools are struggling to provide a free and appropriate education. These costs show no signs of abating. So what will school officials do when the special ed costs are so bankrupting that to provide for them, they have to reduce funding for the regular ed classrooms? How will general education parents react?” While Rudy worries that the costs may be too great, so great that perhaps they should not be borne by society at large, Dachel focuses on the increasing costs and the struggles that schools are undergoing and then wends it her way, as usual, to the tsunami and the idea that “Autism is a devastating, new condition and no one is doing anything to stop it. The whole idea that hundreds of thousands of autistic Americans will be entering adulthood and that no one seems concerned leaves me scared to death. I’ve never heard a single federal health official ever talk about what we’re going to do for adults with autism.” There’s no indication outside Blaxill and Olmsted’s mess of a mercury book that autism is NEW; the rates of special needs children in the school system is NOT significantly different than it has been since IDEA was implemented, although the number of students classified as autistic has increased. From a previous post of mine: In order to evaluate whether we have a tsunami coming, I do what I usually do: I began to look on the government webpages and in the university databases. I found an article from 2005 looking at trends in diagnosing from 1989 to 2000, which concluded: "Although substance-related and affective disorders were more common, the increase was more pronounced for ADHD, which evidenced a 381 percent increase over the study period, and autism, which evidenced a 358 percent increase. Increases were observed in successive periods for all disorders. Diagnoses of ADHD andautism showed peaks among seven- and 12-year-olds. In contrast, substance-related and affective disorders showed gradual increases in discharge rates, peaking among 17-year-olds." The National Center for Educational Statistics provided statistics for the number of students with disabilities served. The rates have been increasing. In 1997-1998, the percentage of students with autism compared to entire population was .1% and has now grown to .6% in 2007-2008 while the percentage of mental retardation has dropped from 1.3% to 1% in the same time. In 2007-2008, there were a total of 6.606 million disabled students from 3-21 served, with 296,000 students with autism. Note that 500,000 students were diagnosed with mental retardation that year. Why is it that so much noise is made over autism when there's nearly double the population with an intellectual disability. The "tsunami" has been there all along. Total percentage of disabled in 1997-1998 was 12.8% and was 13.4% in 2007-2008. While the number of children in the school system with disabilities has increased in sheer numbers, in percentage it has not. In attempting to find out about the students aging out of the public school system, I ran across this on page 654 of the Encyclopedia of Special Education: "Since 1992-93, the number of students ages 18 through 21 served under IDEA has remained fairly constant." Dachel is right in that not enough is being done to secure the future of disabled adolescents reaching adulthood and aging out of the public school system. Resources in communities vary from community to community, as does the aid available to adults with special needs. There are long wait lists in too many places and no clear guidelines for parents with now adult children who are no longer being served by the school system but still in dire need of services. It seems clear, though, statistically, that this tsunami is not a new one, if one at all. The percentage of disabled youth has not changed. As our population has increased, so have the sheer numbers of kids needing extra help, but the percentage of those in need has not. We now identify and label differently; we now include more children with milder conditions, but many of these milder-affected children receive no services from the school system and are not included in the numbers of students serviced. Dachel write, “My worst fear is that the main topic of autism will soon concern not services for children, but instead it will be about paying for fulltime care for autistic adults. Will editorials be warning about the cost and urging lawmakers to cut services? Will there be cold, rational choices or will people call for help for the many disabled adults?” This is perhaps, despite the tsunami repetitions and other usual issues, one of Dachel’s better posts. Not enough is done for the disabled; there are inadequate services, housing and job training and support are inadequate, and for many of us, the issues of what to do for our disabled adult children remains squarely on our own shoulders. For those who get SSI as adults, the maximum amount given is $674 a month; the federal government expects all living expenses to be paid from that; any assistance given can decrease the amount paid to the individual. How many people can live a decent, safe life on that? How many adults with severe disabilities like my son can manage the paperwork to get SSI and then manage the money itself? The truth is that for parents hoping for an end to the responsibility of caregiving when their disabled children turn 21, that will not manifest. Our caregiving roles will continue throughout our lifetimes, regardless of the supports the state puts in place, unless we choose to walk away from our responsibilities. Many of us will have to do as my husband and I did and get legal guardianship of our children as they become adults. We will continue to manage their lives and provide for their care each and every day. Whether the government has a responsibility to do more to financially support my adult child, I am conflicted. My husband and I are, after all, here, and it’s our job to take care of him. The state should be there to help those individuals who have no family or whose families cannot take care of them. The issues of housing and employment extend well beyond our autistic children and it is a serious mistake to focus exclusively on just this population as if it were an exception and extraordinary. All parents dealing with disabled children are dealing with the same issues we are. And indeed, many of them are dealing with more significant impairments and more health issues and complications than are parents of autistic kids. We should allocate more resources to adequate housing and job training and support for all disabilities while we continue to fund early intervention for all disabilities. Rudy ends her piece with the following questions: “To what degree should the needs of one or a relatively few individuals dictate decisions made for society? Should there be any limits placed on resources available to individuals who need or could make good use of them? How much sacrifice is enough?” Readers will have to decide for themselves the relative value of those questions, although I would leave these thoughts: This is a narcissistic culture in which pop stars and athletes are given sums of money that are at best unseemly. This is a culture that prizes artifice and shallow self-absorption over altruism and volunteerism. It is a culture that we each contribute to and hold the power to begin to change. So let's. The state already puts caps on the resources it provides to those most vulnerable; it ensures that the disadvantaged population stays disadvantaged. Not enough is being done. And what is being done is often done sloppily and inefficiently. As to the idea of sacrifice, show me where sacrifice by the general population is being made to the disabled population. Show me. When the special education budgets exceed that of the budget allocated to sports programs, we still won’t be close to community sacrifice. Dachel shows a narrowness of vision with this argument: “Would there be this kind of haggling over how much we’re willing to do if the problem were some other disability? Imagine calls to limit help for blind or deaf kids. Would the needs of the many be considered more important than making life livable for a child who couldn’t hear or see? That idea conjures up images from a Charles Dickens novel.” Are there not limits to help and services for other disabilities? Indeed there are. This is not new. Limited budgets have been the bane of special needs education since IDEA went into place; it’s never been fully funded, and the disabled have always gone without. There should be no question that this should change. Too many in the autism community maintain too narrow a focus by keeping their attention and their concern only on themselves and their children with autism. The issues facing what we do for our autistic children with federal and public funding is as relevant to the broader population of disability as it is to our narrow corner. We must branch out past our narrow perspective and focus our attention on all those with disabilities so that the needs of all are met. Sources: http://www.ageofautism.com/2010/11/the-american-taxpayer-and-funding-sch... http://autism.about.com/b/2010/11/16/autism-and-the-big-questions-part-t... http://autism.about.com/b/2010/11/16/autism-and-the-big-questions-part-t...