If you have a few minutes today, call or email the FDA and tell them it’s time to finalize their ban on the GED (electric shock devices). Disabled people at the Judge Rotenberg Center in Massachusetts are still being tortured with these horrible devices.
I mostly write about my older daughter–the one with autism–in this blog. But younger daughter has her problems too, and last week they became acute. She had been feeling off for about two months, with a persistent cough and fatigue. But then about ten days ago she called up and asked me to take her to the E.R. She was extremely pale and her tongue had a green (!) tinge. I got her there, they took one look and started the process of admitting her to the hospital. She was extremely anemic, and had a startling low number of platelets in her blood. Two days later, she was transferred to the Intensive Care Unit at Barnes Jewish Hospital in St. Louis (where, I have to say, they have been absolutely fantastic with her care).
The immediate problem was an extremely rare (2 cases in every million people–lucky us!) blood disorder called Atypical Hemolytic Uremic Syndrome, in which the immune system attacks the blood. She had to have repeated transfusions of blood and platelets, as well as an extremely scary drug that is the best treatment for AHUS, but increases the risk of contracting Meningitis by 1,000%.
After six days of intensive testing, during which she got sicker and sicker, they determined that the underlying cause was Lupus. Once they started treatment for that, there was an immediate improvement. She didn’t have to have lots of pain medicine and she could eat without vomiting. Last night she was visited in the ICU by a therapy dog. She was able to get out of bed and hug him, which made her (and us) burst into tears.
In short, the chaos continues here in the Midwest. But what a relief to have her feeling better.
I have talked before about the differences between “autism awareness” and “autism acceptance” but I will give you the (somewhat) shorter version real quick: “Awareness” is lazy. It requires no action. It is rooted in ableism and done for non autistic people at our expense. “Awareness” is self narrating zoo exhibits and violations of privacy…
There was recently a thread on Twitter started by Claire Ryan who tweeted: “When is giving a child an award at school, not an award at all?” – along with this excerpt about an autistic boy called Jack. Jack reported being anxious recently in assembly as school were giving out awards. He would sit thinking […]
Mike Stanton has written a blog entry about the latest atrocities at the Judge Rotenberg Center. Meanwhile, I’m wondering, how do we stop things like this in general, not just at the JRC? (None of the pictures on this page, if you are wondering, are of the JRC or any other institution that is named […]
Thanks to Mamautistic for the following:
This is a hard thing to write. But I don’t think that many people really love me.They claim that they do. They tell me I am great and they love my sense of humor, or my artistic abilities or my way with words.But when it really comes down to it, they don’t really love me.I…
Brilliant older daughter recently attended the Association for Behavior Analysis International’s annual conference. This is an odd convention, because about more than half of the participants are ABA practicioners, who work with autistic childfen, while many of the rest are people who study animal behavior.
A. was presenting the results of her research on dog behavior, and the response was tremendous! People were so impresssed that they asked whether she was a graduate student, a post-doc, even a professor–whereas in reality she is only a sophomore in college.
However, things changed after her well-meaning mentor disclosed to all her acquaintances at the conference that A. is on the autism spectrum. At that point, people began to walk up to A. and ask if she was that “sophomore with autism” they had been hearing about. She found this very embarrassing. But what really infuriated her was the difference in reaction between the animal researchers and the ABA practicioners. The former asked if she was “that sophomore with autism,” but then they continued to discuss her research and pose challenging questions (which she enjoyed answering). The latter, on the other hand, started talking down to her, and even ignoring her completely, directing their questions instead to her mentor. What does this say about their attitude towards autistic people–can they not even imagine the possibility of a smart, articulate autistic who might be able to teach them something?
I’ve been wrestling for a while with the organization of this next section.
I’ve decided to write about legislation here, and save discussion of what actually happened in the classroom for future posts.
Revisions in the Education for All Handicapped Children Act (EAHCA) re-shaped the educational rights of children with disabilities in significant ways after 1975, and especially between 1986 and 2005. To review all the relevant changes would take too much time, so I will focus here on those that most directly affected children with autism.
In 1986, EAHCA was revised and reauthorized (Public Law 99-457) to add early intervention programs for infants and toddlers with disabilities. For children diagnosed with autism, such intervention usually took the form of speech, physical, and occupational therapies, but also sometimes included Early Intensive Behavioral Intervention (EIBI), based on the principles of Applied Behavioral Analysis (ABA), as developed by Ivar Lovaas and then modified in various ways by other researchers. In the early 1990s, there was still considerable resistance to EIBI among special educators. By 2000, however, EIBI (often identified simply as “ABA”) had become the most frequently recommended form of early intervention—despite the problems it presented for children’s well-being (see my previous posts on “The Normalization Agenda”). However, even when offered for less than the 40 hours per week recommended by Lovaas, EIBI remained very expensive. A cost-effectiveness study done in Pennsylvania in the late 1990s estimated that between $33,000 and $50,000/year would have to be spent to provide a child with EIBI. These high costs were seldom covered by insurance, and few families could afford them. During the 1990s, a growing number of parents tried to get school districts to provide EIBI, but with only limited success. It is not clear, therefore, what percentage of children diagnosed as autistic actually underwent EIBI between 1986 and 2005.
In 1990, Congress not only revised the EAHCA, but also re-named it the Individuals with Disabilities Education Act (IDEA)—in keeping with the language of the recently passed Americans with Disabilities Act. The 1990 re-authorization spelled out in greater detail how plans for each student (Individualized Education Plans, or IEPs) would be developed and implemented. It also added transition plans for those leaving high school, so that public schools now offered services from infancy through adulthood. Most importantly for our purposes, though, IDEA also modified the list of disabilities covered by special education law.
The 1975 Education for All Handicapped Children Act had used a list of disability categories drawn from even earlier legislation. The list did not include the still rarely diagnosed condition known as autism—which is why the classification of autism remained under debate in educational circles throughout the late 1970s and 1980s (see my earlier post on “Educating Autistic Children 1975-1990). In 1990, however, IDEA listed thirteen categories of disability under which children could qualify for special educational services, and for the first time autism was one of these categories. In the congressional report on the act, autism was defined as a developmental disability, and explicitly distinguished from mental illness. This had a significant impact on the experiences of students with an actual autism diagnosis (still by no means all of those who actually had autism), because they now lost the highly stigmatized “emotionally disturbed” label that had followed them in many places during the 1980s.
The addition of autism to the list of disabilities covered by federal education law probably contributed to the rapid rise in autism diagnoses during the 1990s. A major factor in this rise was the broadening of diagnostic criteria, to recognized the existence of Aspergers Syndrome, PDD-NOS, and other forms, as well as “classic” autism—more people now fell within the autism “spectrum” than in the past. Another reason for the increase in diagnoses was the fact that more professionals in a position to recommend or provide diagnoses were becoming familiar with the condition, through popular books and movies, as well as through scientific papers. Not only doctors and psychologists, but school districts played a role in identifying autistic children during the 1990s–both because of educators’ growing awareness of the condition, and because federal education law required (and still requires) school districts to identify children with disabilities within the area under their jurisdiction–the “child find” requirement. The reasons for the change may have been complex, but the reality was clear. Autism had still been considered a fairly rare condition in 1990, affecting less than 1 out of 1,000 people. By 2000, however, the Centers for Disease Control’s Autism and Developmental Disabilities Monitoring Network reported an average prevalence of 6.7 per 1,000. In other words, by 2000, the prevalence of was considered to be seven to eight times higher than in 1990. As the overall prevalence of autism rose, so too did the the number of children receiving special education services specifically for autism: the number was 22,664 children in 1994; by 2005, it had increased more than eight-fold, to 193,637. The rapidly increasing number of children being provided with services for autism had a major impact on both the children and their school systems, which will be considered in future posts.
In 1997, IDEA underwent a major overhaul. Some of the changes were beneficial for children with disabilities. Educational rights and procedures were clarified, making it easier for parents to obtain services for their children, and for schools to determine how requests for services should be dealt with. Language was added that encouraged higher expectations, better services and increased inclusion in general education classrooms. Particularly important was the new requirement that children with disabilities should be included (with appropriate acccommodations) in statewide assessments. This gave schools a financial interest in ensuring that these children received a decent education. At the same time, the IDEA act of 1997 strengthened school districts’ rights to discipline children with disabilities–especially if they engaged in violent or threatening activity or drug use, but even if they were simply disruptive (or were simply considered disruptive). During the late 1990s issues of classroom management and student behavior became especially salient in public debate and in struggles over practice—and the behavior of children with disabilities came under special scrutiny. In May, 2000, for example, the new senator from Alabama, Jeff Sessions (now Attorney General of the United States), in one of his first speeches on the senate floor, attributed the decline of “civility” in public schools to the disruptions caused by disabled children now included in general education classrooms. (The subject for another post.)
Concerns about “accountability,” about making sure that schools provided a real education for all students, were already reflected in the 1997 reauthorization of IDEA, but they featured more clearly in the No Child Left Behind Act (NCLB) of 2001. NCLB was a reauthorization of the Elementary and Secondary Education Act of 1965, and was aimed at all public schools receiving federal funding. These schools were now required for the first time to make Adequate Yearly Progress (AYP), as measured primarily by the scores its students achieved on statewide standardized tests. The law took into account not only the student body as a whole, but also three specific groups within each school: children with limited English language proficiency, economically disadvantaged children, and children with disabilities. 95% of each group had to participate in the standardized test for it to be considered valid; test results for each group had to be reported separately to the Department of Education, to ensure that “no child” in any of these categories would be “left behind.” Schools that failed to make AYP over several years were subject to increasingly severe corrective actions, which might in extreme cases include replacement of the entire staff, closing the school down, or transforming it into a charter school. At the same time, No Child Left Behind required that all teachers be “highly qualified,” with the minimum acceptable qualifications set by the act itself. NCLB was a deeply controversial act, and its implementation was fraught with all sorts of complex problems and legal actions. However, it did reinforce the legal principle that public schools were obliged to educate, not merely warehouse, children with disabilities.
Finally, IDEA itself was reauthorized in 2004, with a new emphasis on how disabled children were to be helped. NCLB had required that all public school teachers be “highly qualified;” IDEA 2004 applied the same standard to special education teachers—they had to have a bachelor’s degree in special education, and be certified or licensed as special educators by the state they taught in. In addition, if they were going to teach core academic subjects such as math, science, English, and foreign languages, they had to demonstrate “competence” in those subjects. The 2004 reauthorization focused on what teachers did as well as on their qualifications. Individualized Education Plans (IEPs) for students with disabilities should now include only instructional methods and other interventions supported by scientific research which had gone through a process of rigorous peer-review. This “evidence based” requirement was imposed primarily for the benefit of students with learning disorders, but it applied to all children with disabilities, including those with autism.
By 2005, then, more autistic children than ever before were being served by the American public school system. By law, these children were entitled to a “free, appropriate, public education,” provided in the “least restrictive environment.” They were supposed to be taught by “highly qualified” teachers, using scientifically validated instructional methods, and their progress was to be assessed in the same way as that of neurotypical students. However, there is always a significant gap between what laws require and what actually happens. This is true in education as much as in other areas of life. The actual experiences of autistic students in American schools from the 1990s to the present day has been much more complex and from many perspectives less satisfactory. These experiences will be the subject of the next few posts.
 Phillip Strain and Scott McConnell, “Behaviorism in Early Intervention,” Topics in Early Childhood Special Education 12 (1992), 121-42.
 John Jacobson, James Mulick, and Gina Green, “Cost-Benefit Estimates for Early Intensive Behavioral Intervention for Young Children With Autism—General Model and Single State Case,” Behavioral Interventions 13 (1998), 201-26.
 Mitchell Fell and Erik Drasgow, “Litigating a Free Appropriate Public Education: The Lovaas Hearings and Cases,” Journal of Special Education 33 (2000), 205-14; see also Claire Maher Choutka, Patricia T. Doloughty, and Perry A. Zirkel, “The “Discrete Trials” of Applied Behavior Analysis for Children with Autism: Outcome-Related Factors in the Case Law,” Journal of Special Education 38 (2004), 95-103.
 Ruth Colker, Disabled Education: A Critical Analysis of the Individuals with Disabilities Education Act (New York: New York University Press, 2013), p. 88.
 See, for example, Lorna Wing, “The Definition and Prevalence of Autism: A Review,” European Child and Adolescent Psychiatry 2 (1993), 61-74—based on estimate from a variety of countries including the United States.
 Centers for Disease Control, “Prevalence of Autism Spectrum Disorders,” Morbidity and Mortality Weekly Report 56 (February 9, 2007), p. 8
 Centers for Disease Control, Prevalence of the Autism Spectrum Disorders (ASDs) in Multiple Areas of the United States, 2000 and 2002 (pamphlet based on the Morbidity and Mortality Weekly Report for February 9, 2007, with additional data), p. 5.
In The Politics of Autism, I discuss the growing number of college students on the spectrum.At The Journal of Autism and Developmental Disorders, Rebecca Elias and Susan W. White have an article titled “Autism Goes to College: Understanding the Needs of a Student Population on the Rise.” The abstract:Understanding the needs of adolescents and emerging adults with Autism Spectrum Disorder (ASD)…