Autism rates have been increasing in the last few decades but have been increasing at an alarming rate in recent years. Statistics show that in Oregon, Autism rates have increased many times that of the national average since 2003. Some Autism skeptics have stated that the reason for an increase in diagnoses of Autism Spectrum Disorders (ASD) is more likely due to be from: An increased awareness of the disorders among those making the diagnoses, increased awareness among parents now seeking a diagnosis, increased screening for Autism, a broader definition resulting in more diagnoses and misdiagnosis now termed as Autism.
However a bias that has been over-looked in many statistical models is the fact that in Oregon a child can be diagnosed by the education system as well as the medical field and often times in lieu of it. These diagnoses are not only different but educational diagnoses have a direct correlation on educational funding by the federal government and the medical diagnosis does not. This has led to many false statistical data and dubious prevalence conclusions.
The Individuals with Disabilities Education Act (IDEA) provides funds to states for the education of children with disabilities. It contains detailed requirements for the receipt of these funds, including the core requirement of the provision of a free appropriate public education (FAPE). IDEA was comprehensively revised in 1997 by P.L. 105-17, but Congress has continued to grapple with issues relating to the Act.
From the inception of IDEA, Congress has been concerned about both the over identification (that is, identifying children as disabled who are not) and the under identification of children with disabilities (that is, failing to identify and serve children with disabilities). Concern about under-identification can be seen, for example, in the extensive "child find" requirements of the Act. Concern about over-identification is exemplified in the Act by recent changes in the state and sub state formulas to remove possible financial incentives to over-identify and by extensive requirements for judging who is eligible for special education and related services.
In fiscal year 2010, the federal government will have provided $11.5 billion for grants to states through Part B of the IDEA law. IDEA Part B funds are distributed to states through a complex formula where each state is guaranteed base funding equal to what it received in fiscal year 1999. The remainder is distributed to states based on their relative share of children within the age range served by IDEA and their relative share of children in that age range living in poverty.
Students served under the Individuals with Disabilities Education Act (IDEA) can have a wide range of disabilities, and it is therefore difficult for the federal government to determine what it costs to educate each student. The federal government estimates, instead, that it costs twice as much to educate an average student with disabilities as it does to educate a child without a disability.
"In per-pupil terms, the national average spending used to educate the average student with a disability in fiscal year 2010 is an estimated $12,639. This amount includes $8,080 per pupil on special education services, $4,394 per pupil on regular education services and $165 per pupil on services from other federal, special needs programs. The total including only the regular and special education services amounts to $12,474 per pupil." (http://www2.ed.gov/inits/commissionsboards/whspecialeducation/reports/three.html)
In Oregon these figures total, $19,807. This means that Oregon receives $7000 more than the national average.
"When IDEA was enacted, it was estimated that children with disabilities cost approximately twice as much to educate as other children. Congress took that estimate figure into account when setting the maximum federal contribution at 40 percent of state average per pupil expenditure. Estimates of excess cost have not changed much over time. A recent study, using data from the 1999-2000 school year, found that schools spent 1.9 times more in total expenditures and 2.08 times more in current operating expenditures on student with disabilities For FY 2008, the most recent year with data available, IDEA federal funding covered 17.1 percent of the estimated excess cost of educating children with disabilities, the same as in FY 2007 and less than in FY 2006 when federal funding covered 17.7 percent of the cost. The FY 2006 funding represented a significant decrease from the FY 2005 appropriation, which covered 18.5 percent of the excess cost-the first decrease in the federal special education contribution since FY 1996. IDEA Part B "full funding" for FY 2008 would have amounted to approximately $25.47 billion, or roughly $14.54 billion more than was actually appropriated. The shortfall in IDEA funding has been assumed by the states and local school districts." (http://edmoney.newamerica.net/node/28114)
Oregon administers a weighted pupil formula that provides districts with twice as much revenue for special education students as for regular education students. Each district's basic state support amount is determined (in part) by the district's average daily membership-resident (ADM-R). Students receiving special education services are included in the ADM-R and are also counted in the "additional weighted ADM," a figure reported by the Office of Special Education. This additional weighted ADM increases an individual school district's state funding proportionally, but cannot exceed 11 percent of the district's basic state funding.
Under a weighted special education funding system, state special education aid is allocated on a per student basis. The amount of aid is based on the funding "weight" associated with each special education student. In what is commonly called a single weight approach, each special education student is assigned the same weight, whereas multiple weights provide more funding (e.g., larger weights) for those special education students who are expected to cost more to serve. These differentials are based on expected costs because they may not hold true for any one special education student. Funding weights are differentiated on the basis of student placement (e.g., pull-out, special class, private residential), disability category, or some combination of the two. The tier approach also provides differential amounts based on student placement or disability; however a distinction must be made between weights, which are multipliers of the base aid amount, and tiers, which provide a set dollar amount for students that fall into each tier category. (Oregon Public Schools Autism Prevalence Report)
Placed within a national context, Oregon's basic approach to special education funding falls within the category of state formulas referred to as "pupil weights" - the most common approach to special education funding across the states. At the same time, the Oregon approach to weighted special education funding (i.e., with special education students receiving twice the funding weight of a non-special education student) is somewhat unique. Most states using weighted student formulas apply multiple weights within the broad category of special education students, rather than the single weight used by Oregon. In these states, special education students receive different weights distinguished by such attributes as primary special education category of disability, varying categories of special education placement, or some combination of the two.
In 2005, over 70 percent of all students in special education in Oregon spent less than 20 percent of the school day outside regular education classrooms (the least restrictive federal placement reported). Although the percentage of special education students served in this highly integrated setting has been gradually growing across the nation over the past several years, Oregon is still well above the national average of somewhat less than 60 percent. (Oregon Public Schools Autism Prevalence Report)
While this relatively high degree of integration in Oregon may or may not be related to its flat funding weight, one clear advantage of such an approach is that there is an obvious fiscal incentive to place a student in a more restrictive setting than is appropriate to the needs of the child.
Beyond this, approximate current levels of special education provision with the ratios of special education students to key categories of special education providers in Oregon as compared to the nation. As special education provision relies to a very large degree on the quantities of human resources, the number of special education students per special education teacher, aide, and related service provider constitute a very strong basis for comparing special education provision levels in one jurisdiction in relation to another.
The number of special education students per special education teacher in 2004-05 is much higher in Oregon (22.1:1) than what is found across all 50 states on average (16:1). This number is derived by dividing the total number of students in special education in the state by the total number of special education teachers, irrespective of whether they receive services or not from special education teachers. Not only is the number of special education students per teacher much higher than the national average, Oregon is tied with Indiana as having the highest across the 50 states. (Oregon Public Schools Autism Prevalence Report)
This growth in the number of special education children with autism is not unusual for the Oregon. Between 2004-05 and 2005-06, 29 districts showed growth in the rate of children with autism of 27 percent or higher. For the two-year span of 2003-04 to 2005-06, the growth in students with autism in the ten largest districts in the state ranged from 19 to 32 percent, with a statewide average of 28 percent. Over the past seven years, the percentage increase in the number of students with autism skyrocketed by nearly 400 percent in Oregon, and more than 250 percent nationwide. (Centers for Disease Control and Prevention 2007)
Perhaps more than any single factor, the striking growth in the population of students with autism over the past several years is driving the need for reconsideration of state's system of regional provision. Although the growth in this population nationwide is considerable, the increase in Oregon is substantially greater. Thus, it may be reasonable to expect the substantial growth in the number of students identified with autism in Oregon to continue, at least into the immediate future. (Oregon Public Schools Autism Prevalence Report)
Oregon's autism prevalence has been consistently between two and three times the national average. (Centers for Disease Control and Prevention 2007) This difference can occur because the Individuals with Disabilities Education Act lets individual states to decide the details of eligibility. (U.S. Department of Education, Data Accountability Center) They cannot be more restrictive, but they can be more permissive. As a result, most states either use a slight modification of the American Psychiatric Association's Diagnostic and Statistical Manual of Mental Disorders IV or DSM-IV (which is the main diagnostic reference used by mental health professionals and insurance providers in the United States.) or have the diagnosis of autism made by a qualified medical professional. (DSM-IV-TR Edition 4, 2000)
Further clouding the issue, IDEA allows each state to set its own assessment standards and procedures, within the limits of the IDEA.
" Most states follow the diagnostic guidelines in the DSM-IV-but Oregon has created assessment guidelines that are very different. Because of this many of the children assessed as autistic by the school districts in Oregon do not meet the DSM-IV criteria for autism. In contrast, Washington State defines autism much more rigorously by requiring a specific diagnosis, by a board-eligible psychiatrist or licensed clinical psychologist, of autistic disorder. Medical diagnosis and educational assessments have different purposes." (http://www.autism-watch.org/general/edu.shtml)
Medical diagnoses are made in order to:
Determine the best treatment strategy
Advise what to expect in the future (prognosis),
Allow data collection and statistical analysis and
Support billing of third-party payers (i.e. insurance)
Whereas, educational assessments are designed to determine eligibility for special educational assistance. As a result, the educational assessment emphasizes eligibility rather than diagnostic accuracy. This wouldn't be a problem except that the education "diagnoses" are reported to the U.S. Department of Education (USDE) and then used by other organizations to support their positions on autism.
A problem arises from the fact that a medical diagnosis of a disability doesn't automatically entitle a student to special education services under IDEA. Eligibility for special education services is based, rather, on an educational determination of a disability.
There are many differences between a medical diagnosis and an educational determination of a disability. A medical diagnosis is made by a physician based on an assessment of symptoms and diagnostic tests. A medical diagnosis of autism is most frequently made by a physician according to the DSM-IV which guides physicians in diagnosing autistic disorder, Asperger's disorder, and pervasive developmental disorder-not otherwise specified (PDD-NOS) according to a specific number of symptoms.
"The fundamental distinction between a medical diagnosis and an educational determination, however, is the impact the condition has on student learning. The role of the schools is to determine what, if any, impact a student's disability has on his or her learning. Their job is to look at the disability in the context of a learning environment, specifically the classroom. Therefore it is possible, although rarely, for a student to have a medical diagnosis of autism but not be considered a child with a disability under IDEA. Likewise, it is possible and far more frequent for a student to meet the eligibility criteria of a student with autism under IDEA but not have a medical diagnosis of autism. If a student has been diagnosed by a physician as having a disability, but the school district's multidisciplinary team determines the condition does not impact his or her ability to be involved in and progress in the general education curriculum, then the student will not be found to be a student with a disability and the district will not provide special services under IDEA to that student." (http://www.autismweb.com/forum/viewtopic.php?f=1&t=21724)
Many children who receive the educational eligibility/label of ASD in Oregon do not meet the qualifications for a medical diagnosis. The public schools are required to place a child into a category in order to provide special education services to that child. Many children have symptoms of ASDs in one or more areas, but do not fit the criteria to qualify for a medical diagnosis. In this case, the school can say the child has an educational eligibility/label of Autism. This label allows the school to provide individual services for the child. If the child has a medical diagnosis of Autism, but the school does not think the child's Autism is affecting their school functioning, they do not have to provide special education services.
While there is definitely a connection between Oregon's autism prevalence as reported by the USDE and the criteria that Oregon law has established for autism eligibility under IDEA. "However, because the IDEA criteria have no demonstrated relationship to the medical diagnosis, the USDE numbers are not valid for comparing one state to another or even one year to another within a particular state. This does not "prove" or suggest that autism prevalence is not increasing. However, it does mean that the USDE numbers on autism, while extremely convenient, should not be used to track the prevalence of autism in the United States. " (http://www.autism-watch.org/general/edu.shtml)
Currently, the exact number of people with an ASD in the US is unclear. Estimates usually depend on the method used to determine prevalence. Earlier studies estimated the prevalence of autism to be 4 to 5 in 10,000 persons. More recently, estimates of prevalence have tended to rely on reviews of previously published studies. Current figures show that autism occurs in all racial, ethnic and social groups equally. However, boys are three to four times more likely to be affected than girls, the occurrence in siblings of those with ASDs is between 2 and 8 percent, and people with certain other developmental disorders are also more likely to have an ASD.
An increase in prevalence estimates has been observed over time, and in 2007 the Center for Disease Control (CDC) reported the prevalence of ASDs in the United States to be as high as 1 in 150. There are numerous reasons for this increase in prevalence, which may include: changes in study methodology; changes in diagnostic criteria; increased awareness among educational and clinical professionals leading to improved identification; diagnostic substitution; growing acceptance that autism can coexist with a range of other conditions; and a genuine rise in autism. (Centers for Disease Control and Prevention 2007)
Accurate estimates of the true prevalence are valuable in planning diagnostic and intervention services, and interest in explanations for the variability prompted a systematic review to examine quantitatively the influence of study methodology and population characteristics on prevalence estimates of ASD. Forty studies met inclusion criteria, of which 37 estimated the prevalence of typical autism and 23 the prevalence of all ASD. The extent of variation among studies and overall prevalence were estimated using meta-analysis, and the influence of methodological factors and population characteristics on estimated prevalence was investigated using meta-regression and summarized as odds ratios (OR). The review found a wide variation in the prevalence estimates of typical autism and an increase in prevalence estimates over time. The overall estimate of prevalence across studies of typical autism using more rigorous and transparent methods was lower than estimated in previous reviews (Centers for Disease Control and Prevention 2007) at 7.1 per 10,000 (95% confidence interval for true prevalence 1.6 to 30.6), and estimates for all ASD were the same at 20.0 per 10,000 (95% confidence interval for true prevalence 4.9 to 82.1). These figures indicate that, on the basis of available prevalence data, the likely prevalence of ASD is 20 per 10,000 (1 in 500), but that there is a possibility that it could be as low as 4.9 per 10,000 (1 in 2041) and as high as 82.1 per 10,000 (1 in 121).
"In Oregon, the only statewide measure of prevalence is the annually collected child count of students who are identified for special education under the eligibility of criteria for autism. The most recent data shows that there were 7,078 students with a primary eligibility of autism out of a total statewide school enrollment of 566,067 (October 1 2007 Average Daily Membership), or 1 in 80 students. However, the regulations defining the special education eligibility of autism are different from (and somewhat broader than) the medical definition of the ASDs set forth in the DSM IV-TR (2000 American Psychiatric Association), possibly affecting Oregon's numbers compared to other states." (http://www.co-brass.com/index.htm)
"In 2007, CDC's Autism and Developmental Disabilities Monitoring (ADDM) Network published the first and most comprehensive summary of autism prevalence estimates in the United States.
"It found that numerators used in its studies are incomplete because some US school-aged children with ASD and/or the other conditions considered here do not acquire special education classifications and/or are educated outside of public school. Because educational classifications are intended only to match individuals with the most appropriate service delivery approach available, administrative data are more susceptible to diagnosis/classification bias than are data from research studies incorporating rigorous case definitions and case-confirmation criteria. IDEA does provide a standard definition for each disability category, but individual states develop their own eligibility criteria. The IDEA definition for autism is general enough to encompass all ASDs, but state eligibility criteria and the way in which they are implemented can limit, for example, the extent to which higher-functioning children on the autism spectrum receive autism special education classifications." (http://journal.shouxi.net/qikan/article.php?id=221485)
In conclusion there are a number of areas in which prevalence studies could be improved:
" including the continued estimation and evaluation of prevalence in the same population over time; assessment of ASD prevalence in the context of other neurodevelopmental disorders; further analyses of existing datasets to examine the multiple identification and potential risk factors as they vary by prevalence; collection of data beyond core ASD symptoms, including genetic data and co-occurring medical, dental, and behavioral conditions; and expansion of studies across ages." ( http://iacc.hhs.gov/strategic-plan/2010/print_version.jsp)
However, since States differ in their eligibility criteria for the Autism disability category which causes autism prevalence to differ from state to state. So until policy changes such as revisions to the States' eligibility criteria for particular disabilities, and the educational diagnosis of Autism is either eliminated from the data pool or re classified there will continue to be a severe statistical bias in the prevalence of Autism diagnosis in the United States and Oregon in particular.
