The Politics of Diagnosis


24 Jul
24Jul


Any discussion of Special Education within the larger field of education inevitably turns financial -- school budgets struggling under the Special Education paradigm. Many school systems experience a financial imperative to reduce the number of students on the special education rolls. For example, one May 2019 report commissioned by the Coachella Valley Unified School District in CA. suggests, “If the district could move its identification rate from 12.6% to 11.6%, it would reduce the contribution from the general fund, about $3,443,000 million dollars“(Gillaspie, 2019). 

For years theorists have argued that the term “learning disability” is not a  medical or even diagnostic term; rather, it is a social construction (Danforth, Rhodes, 1997) which has been codified into a legal framework for access to services (United States, 1969).  In most school districts, the legal construct of “disability” is required to allow students access to accommodations: by being identified as an individual with a disability, we gain access to an “appropriate education in the least restrictive environment” (United States, 1969).  When I was diagnosed with Dyslexia in the early 1970s, that diagnosis gave me access to tutoring, from a trained “phonics” tutor.  The term “learning disability” is the legal construct used to determine who should receive this alternative approach (United States, 1969).  

So I repeated the first grade and started working with Mrs. Wasserman who was trained in how to teach me to read. When my son was in first grade, I could see that he was struggling, exhibiting some of the same characteristics I had shown in first grade.  When I requested he be tested, we experienced great resistance from the school system.  The principal was under pressure to reduce the number of students receiving special education. He saw part of his job as working to prevent students from becoming identified.  At the time, he recommended we wait until my son was in third grade because then he would be more likely to meet the criteria; the legal standard for a diagnosis still generally requires a significant discrepancy between potential as measured by IQ, and performance as measured by academic skill (ADA, 2009). The principal maintained that there would be a greater discrepancy if we waited until third grade. 

Now, decades of research confirms that students with reading difficulties need early intervention to build phonemic awareness and create alternate pathways for reading acquisition (Shaywitz, 2003).  By waiting until third grade, we might ensure the discrepancy with which to identify his disability, but he would miss that formative period, crucial to his likelihood of attaining fluency, never mind the irreparable damage to his self-concept as a learner.  The financial pressure on the school system asked my son to experience failure for at least three years before even checking to see if he might benefit from an alternate approach.  As it turned out, my son's intelligence sores were high enough that the discrepancy between his potential and his performance were already measurable in first grade.  Because I was able to advocate for him based on my experience in the field, my son was able to get appropriate, early intervention and therefore he learned to read, excelled in school and earned a scholarship to college.But the politics didn't stop. Just because a student has successfully secured the right to an “appropriate: education.”  The pressure to remove students from the special education rolls continues throughout one’s time in school.  At my son' three year evaluation, they brought in a different tester who tried to reclassify him as “emotionally disabled.” Because emotional disabilities do not qualify for the same level of educational services, they are less expensive to the school system. Furthermore, the new triennial report was visibly copied and pasted from other boilerplate reports; it even included references to a math disability.  Although my son has always been gifted at math (760 on the math SAT), the school system's effort to eliminate his services would have put mental illness and math disability into his permanent record.  Though we were able to challenge these assertions, the process so alienated his mother that she refused to participate in any more IEP discussions. 

Even more interesting is to acknowledge that the political pressure actually worked. We were so beaten down by that experience that when our daughter was also struggling to learn to read, her mother refused to sign the paperwork, choosing instead to get into battles with the school system.  Every year, I would send a written request for evaluation, and they would say they could not test her without her mother’s permission. As a result, when my daughter finally did get tested in sixth grade, she was found to be reading at the first grade level. At my daughter’s 8th grade triennial evaluation, she was still reading at a 3rd grade level. The problem is once you're in eighth grade and into high school, there's almost no hope of addressing any core reading issues without paying exorbitant prices for a specialized school.  Nevertheless, the legal construct creates a financial incentive to remove as many kids as they can, stripping most neurological minorities of their best chance to acquire vital academic skills.

Even the 2004 inclusion of Response To Intervention (RTI) in the update to the Individuals with Disabilities Act quickly became another tool used by school systems to avoid identifying students. Although the intent of RTI is to reduce the barriers of classification in order to “improve outcomes and reduce referrals to special education for CLD youth” (Cavendish, et al., 2016), the culture of the schools itself emerged as the primary barrier to implementation (Cavendish, et al., 2016).  One study found that “Of the 119 schools that were studied for first grade, 15 school’s RTI programs were found to have significantly negative findings while four schools reported significantly positive results”(Balu et al., 2015). Furthermore, it soon became clear that implementing RTI itself could be a tool to deny families access to testing. On January 21, 2011 the Office of Special Education Programs’ Director Melody Musgrove had to send a memo to state directors of special education stating, “A Response to Intervention (RTI) Process Cannot Be Used to Delay-Deny an Evaluation for Eligibility under the Individuals with Disabilities Education Act”(Musgrove, 2011). 

Nevertheless, as the anecdotal achievements of RTI illustrate: we have  many effective interventions that significantly improve neurological minority’s chances to be successful. We also know approximately who will need these practices; most veteran teachers can easily recognize the patterns that define each subgroup. Still, rather than planning around this knowledge to create a system to effectively serve neurological minority students, school systems burn their resources obstructing families who seek services.  Even my own children who had the support of parents who understood the systems better than most were both harmed by the financial/legal/political lens through which we view Special Education. 

As recently as 2017, I observed a pattern of intentional misclassification of students that was nothing short of criminal.  In evaluating students’ preparedness for a public-private-partnership transition program, I was tasked with reading the testing and the IEP for each potential incoming student.  In these readings, I discovered students from several different school systems who had been identified with the label “cognitive disability,” meaning that their IQ should be lower than 70, thus delegating them to the permanent status of “intellectually disabled.”  Several of these students displayed much higher levels of aptitude than you would expect from someone with a cognitive disability.  One student spent all his free time playing Magic the Gathering, a card game involving high levels of math, critical thinking and critical reading.  Many neurotypical students Ive known don't have the aptitude to play Magic, and this student had been identified as cognitively impaired. 

According to the norming standards of the Wechsler Adult Intelligence Scale - Fourth Edition ( WAIS – IV ), only 2% of the U.S. population can be characterized as having an intellectual disability -- scoring below 70(Wechsler, 2008). Although people with Intellectual Disabilities often live with a high degree of independence -- work for money, live in apartments, fall in love -- many end up institutionalized after being horrifically victimized by our systems.  On the other hand, people with minority neurological processing profiles exhibit roughly the same intellectual bell curve as the neuro-typical community (Tanaka, et al, 2011).  Although failure to master reading will affect IQ over time (Ferrer, et al., 2009), we enter school with roughly the same intellectual potential as the neurotypical population (Tanaka, et al, 2011). Nevertheless, in the neurotypical education system, targeted students encounter expectations and outcomes more closely resembling people with intellectual disabilities. Our diagnostic and prescriptive structure has been so co-opted by the legal construct of “disability,” it has become an administrative tool used to manage the allocation of resources.

Now imagine instead, if we aligned our legal framework with the research. Rather than pathologically targeting minority families on an individual basis—“Individuals with Disabilities”—we could design a system that recognizes that at least 20% of students will need a different approach. 

Here are five simple reforms to significantly improve student learning experiences and outcomes while cutting the price tag. 

Five Proposals to reform Special Education

  1. Neurodiversity: Like cultural diversity, neurodiversity should be respected and valued for what it can offer the human species overall. If children learned from the first day to celebrate neurological differences and recognize each of our strengths, we could significantly reduce the anxiety of being “normal.”
  2. Teacher training: Require an understanding of neurodiversity as part of teacher training.  Teachers, especially in the early grades, should recognize different neurological profiles and work to ensure that their needs are met. 
  3. Lower barriers to instruction: We must plan educational systems that recognize the different needs of different students. In my experience, too much special ed money is spent either blocking people from getting services or providing band-aids for the people who didn’t get the services they needed.
  4. Universal Design: Follow Universal Design principles starting in preschool so that all students can experience success from the start. Rather than perpetuating systems that privilege the neurotypical “norm,” Universal Design seeks to create a context that is accessible to students regardless of profile.
  5. Reorganize Classrooms: Classes should be organized by skill level, not age. We know that 14% to 30% of the population needs different interventions. We can worry about “Inclusion” after we actually teach them to read.  The neurotypical majority would continue to progress as they have, but kids with minority profiles could actually receive appropriate instruction.  


The “Special Education” paradigm has failed. It didn’t work when my parents were fighting the school system 50 years ago, and it continues to fail today. How many more generations must we damage? The damage is measurable and the cost of this failure is felt all throughout our society.  Until we shift the paradigm, our schools will continue to inflict permanent damage on families with minority neurological profiles, at great cost to society.

It is time for reform. 

12Dec
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