The traditional term for not speaking is ‘dumb.’ That says it all. If someone can’t talk then they are ‘dumb.’ I am dumb, apparently. The thesaurus offers these synonyms for dumb: among them mute, speechless, silent, and then fifty additional synonyms for stupidity, including the colorful pinheaded and dim-witted. The bias equating intelligence with speech…Civil Rights for Nonspeakers — Ido in Autismland
For a student with autism, diagnosis is always a double-edged sword. On the one hand, an official diagnosis may result in access to services such as ABA (for good or ill), speech therapy, occupational therapy, physical therapy, etc.; and for accommodations at school such as classroom aides, extended time on tests, access to quiet rooms, etc. It offers some legal protections against suspension or expulsion from school. At the same time, autism obviously carries a profound stigma in American society. In school, the child who has an autism diagnosis is often regarded by administrators, teachers and staff as different and potentially dangerous. Non-verbal autistics are usually assigned to special education classrooms, or even separate schools, where they usually receive only a limited academic education, regardless of their actual intelligence and potential. And despite privacy rules, autistic children’s diagnoses far too often become known to their fellow students, resulting in bullying.
Many parents are aware of these problems, and struggle with deciding what is best for their child, or sometimes what is best for the parents themselves, or for the rest of the child’s family. Should they seek a diagnosis or not? And if they do receive a diagnosis from a doctor or psychologist, should they share it with the school? Does their child’s need for services, accommodations, and protection outweigh the potential impact of stigma? But parental anxiety about stigma is only one of many factors affecting whether a child is diagnosed. Sex, socio-economic status, race/ethnicity, immigrant status, language and cultural differences, and even the place where a child lives, all play a role in determining who will be diagnosed and who will not.
“Four times as many boys as girls have autism.” This has been repeated so often that it may be treated as a simple fact. But the correct formulation should actually be that “four times as many boys as girls receive autism diagnoses.” We simply don’t know how many girls have autism. What we do know now, though, is that many girls on the spectrum remain undiagnosed because parents, psychologists and pediatricians don’t know what autism looks like in girls. For example: parents and care-givers are more likely to become concerned and more likely to seek a professional diagnosis when children engage in “externalizing” (aggressive) behaviors. But because girls are less likely than boys to behave aggressively, parents may not realize the extent to which they are “different” from other children, and as a result, their daughters may not be tested for autism until they reach school age or even beyond. In addition, most parents and professionals still don’t realize that autistic girls are better at “camouflaging” or “passing” than autistic boys, because they are likely to imitate the behavior of those around them (even if they don’t understand the reasons for that behavior), whereas boys are more likely to simply withdraw from social interactions altogether. The standard diagnostic criteria for autism present additional problems. Engagement in repetitive behaviors has long been a key criterion. But autistic girls are less likely to engage in repetitive behaviors than boys—and even when they do, these behaviors may appear at first glance to be normal for young females. Autistic girls may collect dolls or devote lots of time to coloring pictures. What parents and the professional responsible for diagnosis often don’t realize is that these girls are not playing with the dolls, but rather lining them up according to the color of their dresses; they are filling their coloring books with intricate patterns that have little to do with what’s going on in the pictures. As a result of these and other factors, girls are generally diagnosed at a later age than boys, and may remain undiagnosed into adulthood, even when they are quite severely affected by autism.”
Coming from a poor family also makes it less likely that an autistic child will receive a diagnosis. As one study found: “ . . . the proportion of children in poverty receiving services or supplementary income because of ASD was lower than the proportion expected on the basis of estimates of the prevalence of ASD in the general population.” While autism diagnoses have increased rapidly in recent years, the increase has been much lower for the poor than for other income groups. This is almost certainly because access to health care (and therefore medical sources of diagnosis) is much more limited for the poor in the United States, than for the middle and upper class. In countries with universal health care, such as Sweden and France, such differences do not exist.
Children of color are less likely than white kids to be diagnosed with autism. They are also more likely than white kids to be diagnosed late (after they have started school), or simply mis-diagnosed as having emotional or behavioral problems. The time from when parents become concerned to when the child receives an official diagnosis (if they ever do) is significantly longer for children of color than for whites. Even when socio-economic status and levels of parental education are factored in, these disparities remain. Among children of color, those most likely to be diagnosed are those with lower (or apparently lower) IQs, while those with the “milder phenotype” of autism (what used to be called Aspergers syndrome) remain under-identified. Fewer children of color receive early intervention services (such as ABA or TEACCH) for autism, and when they do receive services, it is generally for fewer hours a week. Once they reach school age, they are more likely than white kids to be identified as having “behavior problems” and are over-represented in school services targeting behavior (as opposed to social skills or learning techniques).  High levels of poverty in these communities, as well as prejudice, contribute to these disparities. Racial disparities in diagnosis and services affect all non-white children, but some groups—especially Hispanics and African-Americans—are more seriously affected than others.
Immigrant families may be poor and they may belong to racial or ethnic minorities, but they also face problems in receiving accurate diagnoses for their children simply because they are immigrants. Language differences can be a significant barrier, because so many of the diagnostic tools for autism are based on instruments originally written in English, and perhaps unavailable in, or poorly translated into, other languages. (Some immigrants may also be unable to read or write.) Lack of familiarity with American medical and educational systems may play a role, as do those systems lack of familiarity with other cultures. For example: many American practitioners view a child who is unwilling to make eye contact with them as potentially autistic. However, in many immigrant communities, children are taught that it is rude to look directly into an adult’s eyes. Some of the testing used to detect autism looks at children’s interactions with toys—but immigrant children may have never seen the toys presented to them, and may have no idea how to play with them “appropriately.” It is also possible that cultural differences may shape an immigrant family’s decision to seek a diagnosis. One study found that Korean-American families in New York City were often reluctant to seek diagnosis (or even discuss autism with others), because of the shame having a disabled child might bring on their family. This, and other similar studies, must be treated with caution, however, because they tend to be based on interviews with a very small sample of people, who may not be representative of the group as a whole. However, it is certainly possible that cultural differences play a role in immigrant families’ decision to seek a diagnosis.
Finally, there is the question of whether families who want a diagnosis and who have enough resources to get one can find someone to provide it. Other things (wealth, English language competency, etc.) being equal, it is not very difficult to find a doctor or psychologist able to diagnose autism in most of America’s big cities. However, one recent, if somewhat controversial, study, has identified a multitude of “diagnosis deserts,” especially in rural or thinly populated parts of the United States. 80% of U.S. counties have no autism diagnostic clinics. Families from these areas have to either travel long distances to find a qualified diagnostician, or wait until their children are old enough to receive diagnoses and services from local school systems.
Disparities in the ability to get an autism diagnosis are significant, and they have significant implications as well. In my next post I will concentrate on just one issue—the impact of having/not having an autism diagnosis on school discipline.
 E.g., “What is Autism Spectrum Disorder,” Center for Disease Control and Prevention website (current): https://www.cdc.gov/ncbddd/autism/facts.html; Deane Morrison, “Why Autism Strikes Mostly Boys,” University of Minnesota’s Office of the Vice-President for Research’s website (November 27, 1917): https://research.umn.edu/inquiry/post/why-autism-strikes-mostly-boys;
 Sylvie Goldman, “Sex, Gender, and the Diagnosis of Autism—A Biosocial View of the Male Preponderance,” Research in Autism Spectrum Disorders 7 (2013), 675-679; Lauren Little, et al., “Do early caregiver concerns differ for girls with autism spectrum disorders?” Autism: The International Journal of Research and Practice 21 (2017), 728-32;
 Jorieke Duvocot, et al., “Factors Influencing the Probability of a Diagnosis of Autism Spectrum Disorder in Girls versus Boys,” Autism: The International Journal of Research and Practice 21 (2017), 646-58.
 Rachel Hiller, Robyn Young, and Nathan Weber, “Sex Differences in Pre-Diagnosis Concerns for Children Later Diagnosed with Autism Spectrum Disorder,” Autism: The International Journal of Research and Practice 20 (2016), 75-84.
 Although this view remains somewhat controversial. Compare two recent articles in Spectrum News: Nicholette Zeliadt, “Diagnostic Tests Miss Autism Features in Girls” (May 13, 2017): https://www.spectrumnews.org/news/diagnostic-tests-miss-autism-features-girls/; and Hannah Furfaro, “Diagnostic tests don’t miss girls with autism, study suggests”: https://www.spectrumnews.org/news/diagnostic-tests-dont-miss-girls-autism-study-suggests/. It is worth noting, however, that the study described in the second article looked at girls already diagnosed with autism—which undermines its main point.
 Rachel Hiller, Robyn Young. and Nathan Weber, “Sex Differences in Autism Spectrum Disorder Based on DSM-5: Evidence from Clinician and Teacher Reporting,” Journal of Abnormal Child Psychology 42 (2014), 1381–1393.
 Rachel Hiller, Robyn Young, and Nathan Weber, “Sex Differences in Pre-Diagnosis Concerns for Children Later Diagnosed with Autism Spectrum Disorder,” Autism: The International Journal of Research and Practice 20 (2016), 75-84.
 Maureen Durkin, et al., “Autism Spectrum Disorder Among US Children (2002–2010): Socioeconomic, Racial, and Ethnic Disparities,” American Journal of Public Health 107:11 (2017), 1818-1826. See also Pauline Thomas, et al., “The Association of Autism Diagnosis with Socioeconomic Status,” Autism: The International Journal of Research and Practice 16:2 (March, 2012), 201-13.
 C.D. Pulcini, et al., “Poverty and Trends in Three Chronic Disorders,” Pediatrics 139:3 (March, 2017).
 Maureen Durkin, et al., “Autism Spectrum Disorder Among US Children (2002–2010): Socioeconomic, Racial, and Ethnic Disparities,” American Journal of Public Health 107:11 (2017), 1818-1826.
 Amber Angell, et al., “A Review of Diagnosis and Service Disparities Among Children with Autism from Racial or Ethnic Minority Groups in the United States,” International Review of Research in Developmental Disabilities 55 (2018), 145-80. See also Jason Travers and Michael Krezmien, “Racial Disparities in Autism Identification in the United States During 2014,” Exceptional Children 84 (2018), 403-19. Travers and Kremien pay special attention to differences between states in racial disparities; these differences can be quite significant.
 Emily Sohn, “Why Autism Seems to Cluster in Some Immigrant Groups,” Spectrum News, 11/29/17.
 Christina Kang-Yi, et al., “Influence of Community-Level Cultural Beliefs about Autism on Families’ and Professionals’ Care for Children,” Transcultural Psychiatry 55 (2018), 623-47. But compare the following three studies, each of which comes to a different conclusion about Mexican immigrant mothers’ attitudes towards autism: Elizabeth Ijalba, “Hispanic Immigrant Mothers of Young Children With Autism Spectrum Disorders: How Do They Understand and Cope With Autism?” American Journal of Speech-Language Pathology 25 (2016), 200-13; Shana Cohen and Jessica Miguel, “ Amor and Social Stigma: ASD Beliefs Among Immigrant Mexican Parents,” Journal of Autism and Developmental Disorders 48 (2018), 1995-2009; Brenda Barrio, et al., “The Impact of Culture on Parental Perceptions about Autism Spectrum Disorders: Striving for Culturally Competent Practices,” Multicultural Learning and Teaching 14 (2019), 1-9.
 Hannah Furfaro, “New Autism Map Points to Diagnostic Deserts in United States,” Spectrum News, 8/28/19:
It is perfectly possible to reduce both the frequency and violence of student meltdowns, which will, in turn, reduce the need for restraint and seclusion in schools. However, this requires a change in attitude on the part of educators, towards seeing autistic children not as willfully naughty or manipulative, but as overwhelmed and frightened. Teachers, aides and other educators also need to be willing to observe these children’s behavior carefully and make “meltdown plans” in advance. Given the already heavy burden carried by educators today, this may seem like a lot to ask, but dealing effectively with meltdowns will certainly reduce educators’ stress in the long run.
The best practical advice for teachers on this subject that I have found comes from three books. Deborah Lipsky and Will Richards’ Managing Meltdowns: Using the S.C.A.R.E.D. Calming Technique with Children and Adults with Autism focuses on interventions that can be used during a meltdown. Deborah Lipsky’s From Anxiety to Meltdown: How Individuals on the Autism Spectrum Deal with Anxiety, Experience Meltdowns, Manifest Tantrums, and How You Can Intervene Effectively, and Geoff Colvin and Martin Sheehan’s Managing the Cycle of Meltdowns also offer guidance on ways to prevent (or at least limit the number of) meltdowns in the first place. Lipsky is herself autistic, has experience working as and for first responders (EMTs, firefighters, police officers), and writes from the perspective of her own personal experiences and those of other autistic people she has worked with. Her collaborator for the first book, Will Richards, is a clinical psychologist, with extensive experience treating autistic clients. Colvin and Sheehan are professional educators who have spent decades working with autistic children in schools. Despite their very different backgrounds, their conclusions are remarkably similar.
All these writers clearly distinguish meltdowns from temper tantrums. And all of them describe melting down as a process, which can be interrupted by an observant and skilled teacher or first responder. Colvin and Sheehan propose a six-phase model of the “meltdown cycle,” in which a student who had been in a state of calm is subject to one or more triggering events, which then lead to increasing agitation until the point of no return is reached and he or she melts down. Once the meltdown has played itself out, there is a period of re-grouping during which the student is beginning to recover but may easily melt down again if pushed too hard. Finally, the student becomes calm enough to start over, although with some lingering anxiety, uncertainty, and irritation. Lipsky does not present her observations in quite the same way, but a careful reading of her book shows that she holds a very similar view of the meltdown as a process.
“Avoiding it in the first place is the most effective way of preventing a meltdown.” Both Lipsky and Colvin and Sheehan offer extensive advice on how to maintain a student with autism in the calm phase, which essentially comes down to using best practices for teachers of autistic students: providing sensory diets as needed, using visual supports, having clear rules (systematically taught to the whole class), planning ahead, and adjusting the curriculum as needed. The three authors also encourage teachers and aides to identify and limit as much as possible triggers that may disrupt a student’s calm participation in class—whether these are sensory issues, unexpected breaks in routine, or something else.
Teachers must also learn how to recognize the signs of increasing agitation, and how to intervene to de-escalate the situation with reassurance, comfort, and support. According to Colvin and Sheehan, agitation is “normally an observable manifestation that something is wrong with the student.” While some students move very quickly through the agitation phase to a full-blown meltdown, offering little time for intervention, much more often there is a period of agitation during which an observant teacher will notice increased stimming, wriggling, pacing and noise-making, or decreased interaction with others, including partial or total loss of the ability to communicate, non-compliance with directions, covering eyes or staring into space, hiding hands or even seeking isolation. Training teachers to recognize these signs can have a huge impact on the frequency and violence of meltdowns in their classrooms. When an autistic student is becoming agitated, the teacher or classroom aide can step in to provide reassurance and empathy, offer opportunities for breaks or for movement to quiet spaces, and encourage self-management (if the student already has some skills in this area). Reducing an autistic student’s agitation is the key to preventing meltdowns. It is essential that school personnel not become agitated themselves during this phase, as this will simply increase the student’s agitation and make a meltdown more likely.
If a teacher misses or ignores the signs, the student’s agitation will continue to increase until they reach a “point of no return,” after which a meltdown is going to occur no matter what. And once the meltdown begins, it will need to run its course, which typically ends when the child is too exhausted to continue. School personnel and school police officers must recognize that at this point the student cannot control her or his behavior, and neither can they. Shouting commands at a frightened child in the middle of an instinctual fight-or-flight reaction can only make the situation worse. Instead, the school should already have decided on an action plan and included it in the student’s IEP. (Obviously, if a child is having meltdowns in school, he or she should have an IEP). Staff should be trained in advance in ways of providing support for the melting-down student, by limiting additional sensory input, remaining calm, staying nearby (but not too close), and saying encouraging things in a low-pitched, slow voice. According to Lipsky, the calm and sympathetic use of the student’s name during a meltdown can be especially helpful. Educators should know how to calmly and quietly guide the student to a safe place and the meltdown plan should always ensure that someone observes the child while he or she is there. If there is an immediate threat of injury to the student or those nearby, strategies should be in place for using (and later reporting) safe forms of restraint as a last (not first) resort. Under some circumstances it may be better to clear the classroom of other students, until the meltdown is over. 
When the meltdown is past, it is cruel and counterproductive to criticize the student—who is physically and emotionally exhausted, and probably already deeply embarrassed about/ashamed of what happened. It should be unnecessary to say that police involvement after the meltdown is ended can only be counterproductive. Neither is it useful to interrogate the student about why the meltdown happened. (Discussion of the meltdown can occur sometime later—perhaps even the following day.) Autistic children are still emotionally labile during the “regrouping” phase and may escalate into a second meltdown if pushed too hard. Rather, the teacher or an aide should continue to offer quiet support and can encourage the student to use a stim toy or pursue their special interest as a way of bringing them back from the fight for survival into the ordinary world.
Eventually, the student will return to a non-agitated, relatively normal state during the “starting over” phase, and can return to the classroom (if they left it during the meltdown). Nevertheless, they may still be feeling some anxiety, irritability, or uncertainty, and should not be pushed too quickly to engage in normal learning activities. Concrete tasks, which the student has already shown he or she can perform, are the best activities for this period; engaging in such tasks can help the student gain confidence and eventually return to their original state of calm.
Good teachers here and there throughout the United States
have already learned how to manage meltdowns successfully, using these or
similar techniques. It is time for such
techniques to become standard practice in all of our schools. But it all starts with changing the attitudes
of the adults involved towards the autistic students they serve.
 Grafton Integrated Health Care, a for-profit behavioral health organization, has claimed that its proprietary “Ukeru model” has reduced incidents of restraint by 99% and incidents of seclusion by 100% over the course of 14 years (2003-2016), in community as well as institutional settings. They claim that staff injuries from restraint have declined by 100% in community settings, and 97% in institutions: Jason Craig and Kimberly Sanders, “Evaluation of a Program Model for Minimizing Restraint and Seclusion,” Advances in Neurodevelopmental Disorders 2 (2018), 344-352. The authors of this paper are affiliated with Grafton, and I have not been able to discover any corroborating analyses conducted by unaffiliated scientists.
 Deborah Lipsky and Will Richards, Managing Meltdowns: Using the S.C.A.R.E.D. Calming Technique with Children and Adults with Autism (London: Jessica Kingsley, 2009); Deborah Lipsky, From Anxiety to Meltdown: How Individuals on the Autism Spectrum Deal with Anxiety, Experience Meltdowns, Manifest Tantrums, and How You Can Intervene Effectively (London: Jessica Kingsley, 2011) and Geoff Colvin and Martin Sheehan, Managing the Cycle of Meltdowns for Students with Autism Spectrum Disorder (Thousand Oaks, CA: Corwin, 2012). Another excellent book on this subject is Judy Endow’s Outsmarting Explosive Behavior: A Visual System of Support and Intervention for Individuals with Autism Spectrum Disorders (Shawnee Mission, Kansas: Autism Publishing Company, 2009).
 Lipsky and Richards, Managing Meltdowns, section entitled “Are Meltdowns and Temper Tantrums the Same Thing?” (I am using the Kindle edition of the book, which has no page numbers); Lipsky, From Anxiety to Meltdown, p. 108, 135-42, and especially 149-52 (on determining whether behavior is a tantrum or a meltdown). Incidentally, Lipsky also offers some very useful suggestions for dealing with tantrums, even though her main focus is on meltdowns: see pp. 142-49Colvin and Sheehan, Managing the Cycle of Meltdowns, pp. 22-25.
 Colvin and Sheehan, Managing the Cycle, pp. 29-30.
 Lipsky, From Anxiety to Meltdown, see especially, p. 127. Judy Endow has a similar model: Outsmarting Explosive Behavior: A Visual System of Support and Intervention for Individuals with Autism Spectrum Disorders (Shawnee Mission, Kansas: Autism Publishing Company, 2009), pp. 11-46.
 Lipsky, From Anxiety to Meltdown, p. 229.
 Colvin and Sheehan, Managing the Cycle of Meltdowns, pp. 63-108; discussion of potential triggers is a particular strength of Lipsky’s book, From Anxiety to Meltdown, pp. 161-214.
 Colvin and Sheehan, Managing the Cycle of Meltdowns, pp. 40-43; Lipsky and Richards, Managing Meltdowns, section on “What Are Some of the Warning Signs of a Potential Meltdown?”
 Colvin and Sheehan, Managing the Cycle of Meltdowns, pp. 109-22.
 The phrase “point of no return” is used by Judy Endow, Outsmarting Explosive Behavior, pp. 35-40. She uses it to emphasize that once a child has reached this point they are no longer in control of their behavior; making a meltdown inevitable.
 Lipsky and Richards, Managing Meltdowns; Lipsky, From Anxiety to Meltdowns, pp. 216-22; Colvin and Sheehan, Managing the Cycle of Meltdowns, pp. 135-36
 Lipsky, From Anxiety to Meltdown, p. 221.
 Colvin and Sheehan, Managing the Cycle of Meltdowns, p. 123-41; compare Lipsky, From Anxiety to Meltdown, p. 221.
 Lipsky, From Anxiety to Meltdown, pp. 110, 126, 141.
 Colvin and Sheehan, Managing the Cycle of Meltdowns, pp. 142-53.
 Colvin and Sheehan, Managing the Cycle of Meltdowns, pp. 49-51, 154-68.
Trigger warning: descriptions of abusive practices.
Annoyance warning: this post is really long–sorry about that . . .
In November 2018, Alex Campbell, 13 years old and autistic, travelled to Washington, D.C., where he spoke to congressional staffers and disability activists about being physically restrained and secluded in his elementary school. Alex is a seasoned advocate—he started talking to legislators in his home state of Virginia about these abusive practices at the ripe old age of ten, and the trip to Washington in 2018 was his second visit with federal legislators and staffers. He plans to be a civil rights lawyer when he grows up.
But back when he was seven years old, Alex attended a private elementary school for children with disabilities. He remembers being repeatedly dragged from his classroom to the school’s “crisis room,” a converted storage closet with black-painted walls and a tiny window. The teacher or administrator who took him there would shove a heavy desk against the door to prevent it from opening and then leave him alone, confused and terrified. “When I asked for help or asked if anyone was still there, nobody would answer,” Alex said. “I felt alone. I felt scared.” At the time, Virginia had no law requiring such schools to inform parents if their children were restrained or secluded, and the principal of Alex’s school threatened to confine him to the “crisis room” for the rest of the year if he told his parents about what was happening. However, his mother and father soon noticed that their son had unexplained bruises, and that he was becoming more and more anxious. Eventually, he broke down and told them what was happening to him at school.
Sadly, Alex Campbell’s history is far from unusual. Shortly after Alex spoke in Washington for the second time, another autistic thirteen-year-old, Max Benson, was held for a prolonged period in a dangerous “prone restraint” by staff members in the private school for children with disabilities he attended in California. Max later died in hospital from his injuries. The use of prone restraints in schools is against the law in California, but the school in question (which has since gone out of business) frequently used them anyway.
The U.S. Department of Education’s Civil Rights Data Collection reports that roughly 124,000 students were restrained or secluded across the country during the latest period for which data is currently available, the 2015-16 school year. But this is certainly an undercount, and perhaps by a large amount. Many school districts do not collect the relevant data, or they fail to deliver it to the Department of Education as required. Even when they do make a report, the information provided may not be accurate. For example, the internal records of Cedar Rapids Community School District in Iowa showed that there had been 1,400 restraint/seclusion incidents from 2012-14—but none of these was reported to the U.S. Department of Education. Iowa’s two senators launched an investigation into this underreporting. Fairfax County Public Schools in Virginia likewise reported zero cases of restraint or seclusion during the 2015-16 school year. However, following an investigation by a journalist from American University, Fairfax County Schools reported 1,700 cases in 2017-18. In the CRDC survey, roughly 70% of all school districts nationwide reported zero cases of restraint and seclusion in 2015-16. If their reports were anything similar to those of Cedar Rapids or Fairfax County, then many, many cases of children being restrained and secluded have probably been kept hidden from the Department of Education’s view.
Children with disabilities (primarily children with autism and ADHD) are much more likely than those without disabilities to face physical restraint and seclusion (isolation), as well as other forms of discipline such as suspension and expulsion. According to the U.S. Department of Education Civil Rights Data Collection for the 2015-16 school year, while children with disabilities represented only 12% of students nationally, they represented 71% of those suffering restraint and 66% of those facing seclusion. Children of color are especially likely to face restraint, seclusion, and even arrest, for minor infractions of school discipline. After eleven-year-old African-American Kayleb Moon-Robinson, who is autistic, kicked a trash can during a meltdown in 2014, his Virginia school’s police officer filed charges of disorderly conduct against him in juvenile court. The punishment imposed by the school was that he was only allowed to leave the classroom after his classmates had done so. A few weeks later he broke this rule by leaving with the other kids. The school principal called the police officer, who grabbed Kayleb and tried to take him to the office; when the child resisted, he was slammed down, handcuffed, and taken instead to juvenile court, where he was charged not only with a second count of disorderly conduct (a misdemeanor) but also with “assault on a police officer” (a felony). A judge later found him guilty on all charges, and Kayleb faced doing time in a juvenile detention facility, but in the end the case was dropped and he transferred to a different school. The Department of Education’s Civil Rights Data Collection does not break down data by both race and disability, but it does note that while African-Americans make up only 15% of the student population in the United States, they represent 27% of students restrained and 23% of those secluded.
Children have few legal protections against these practices. A 2012 resource document from the U.S. Department of Education explicitly states that restraint should not be used “except in situations where the child’s behavior poses imminent danger of serious physical harm to self or others.” Yet as of December 2016, only 22 states required that a child must pose an immediate physical threat to her/himself or others before restraint can be used. Elsewhere, restraints could be applied in cases where a child simply disobeys a teacher or acts out in non-threatening ways—as, for example, in the case of Thomas Brown of Denton, TX, who had a meltdown when he couldn’t get his shoes on and disrupted his class by swinging a computer mouse around. Eventually Thomas hid in his classroom cubby and refused to come out. At this point—when he actually posed no threat to anyone—his teacher and the school police officer dragged him out of the cubby, down the hall, and into the seclusion room, where he was handcuffed by the police officer. David Sims, of Conroe, Texas, who is also autistic, was not even having a meltdown when he was restrained. Instead, he was pretending to point an imaginary rifle at his art teacher. Nevertheless, he was handcuffed and taken to the local Juvenile Detention Center and held there for several hours.
As of December, 2016, only 24 states forbade the use of mechanical restraints such as handcuffs or leather straps. Many others continue to permit tying children to their seats with handcuffs, straps, duct tape, and other materials—a significant safety hazard in case of fire or other emergencies. Only 20 states forbade the use of sedatives (“chemical restraints”) to keep children under control. 17 states continued to allow the use of physical restraints that impede breathing (such as prone restraints). Only 23 states banned non-emergency seclusion of children with disabilities—elsewhere autistic children can still be locked in “crisis rooms,” storage closets or even bathrooms, sometimes for hours, for minor infractions. Only 32 states required that disabled children remain under observation while in seclusion, even though lack of observation could and can lead to the injury or even death of an overwhelmed child. As I write this, there is still no federal law regulating the use of restraint and seclusion in schools (this is what Alex Campbell has been lobbying for).
Restraint and seclusion are dangerous practices, both for the children subjected to them and for the staff implementing them. They expose children (and staff) to physical dangers: bruises, bloody noses, broken limbs, and—in the case of the children—even death. Still more disturbing, however, are the psychological effects. Remember that autistic children do not “choose” to have meltdowns. They are unable to control themselves during a meltdown, and are usually very frightened by what’s already happening to them—even before they are “punished” by an exasperated teacher or an untrained police officer. When that happens, they usually don’t understand why this is happening to them—they just know that they are being manhandled and locked up, and as a result they fight back even harder. Hannah Grieco reports that her son needed a year of “intensive therapy” to recover from the restraint he suffered at school. An autistic blogger remembers being secluded in school for hours at a time as “torture.” Many children who have been subjected to these practices suffer from PTSD. They may cry, scream or hide when they even see their school; they may beg their parents not to leave them there. Some have committed suicide during seclusion (when a school has failed in its duty to keep children under observation) or at home, after repeated incidents of seclusion.
Finally, it is the case that restraint and seclusion are completely ineffective as forms of discipline. As former Secretary of Education Arne Duncan put it: “there continues to be no evidence that using restraint or seclusion is effective in reducing the occurrence of the problem behaviors that frequently precipitate the use of such techniques.” The techniques may teach children to fear their teachers, aides, or school resource officers, but they do not teach them anything at all about controlling their own behavior—which is out of their conscious control anyway. If anything, they tend to make autistic students more anxious, more stressed, and therefore more likely to suffer meltdowns, creating a vicious cycle of stress, classroom disturbance, punishment, escalating stress, further disturbance, and so on. In dealing with meltdowns, immediate resort to restraint and seclusion represent “worst” practice.
There are better ways.
 Hannah Rappleye and Liz Brown, “Thirteen-year-old Activist with Autism Wants to Close Seclusion Rooms at Schools,” NBC news report, November 23, 2018: https://www.nbcnews.com/news/education/thirteen-year-old-activist-autism-wants-close-seclusion-rooms-schools-n935356.
 Sawsan Morrar and Phillip Reese, “School Where Student with Autism Collapsed and Later Died Violated Restraint Rules, California Regulators Find,” The Sacramento Bee, December 8, 2018: https://www.sacbee.com/latest-news/article222799470.html.
 U.S. Department of Education,“2015-16 Civil Rights Data Collection: School Climate And Safety,” p. 12: https://www2.ed.gov/about/offices/list/ocr/docs/school-climate-and-safety.pdf.
 Susan Ferriss, “Virginia Tops Nation in Sending Students to Cops, Courts: Where Does Your State Rank?” The Center for Public Integrity website, April 10, 2015; revised February 19, 2016: https://publicintegrity.org/education/virginia-tops-nation-in-sending-students-to-cops-courts-where-does-your-state-rank/ ; Susan Ferriss, “Virginia drops felony charges against sixth-grade boy with autism,” Reveal (published by the Center for Public Integrity), March 15, 2016: https://www.revealnews.org/article/virginia-drops-felony-charges-against-sixth-grade-boy-with-autism/.
 U.S. Department of Education, “2015-16 Civil Rights Data Collection: School Climate And Safety,” p. 11: https://www2.ed.gov/about/offices/list/ocr/docs/school-climate-and-safety.pdf.
 National Disability Rights Network, “School Is Not Supposed to Hurt: Investigative Report on Abusive Restraint and Seclusion in Schools”: https://www.ndrn.org/wp-content/uploads/2019/02/SR-Report2009.pdf.
 U.S. Department of Education, “Restraint and Seclusion: Resource Document,” 2012: https://www2.ed.gov/policy/seclusion/restraint-and-seclusion-resource-document.html.
 “Denton ISD Faces Scrutiny After Officer Seen Handcuffing, Pinning Down Autistic Child,” report on the Dallas-Fort Worth CBS affiliate: https://dfw.cbslocal.com/2018/08/11/denton-isd-officer-seen-handcuffing-pinning-down-autistic-child/; see also Tom Steele, “Autistic child severely bruised after school officer handcuffed him, Denton parents say,” Dallas News, May 15, 2018: https://www.dallasnews.com/news/denton/2018/05/15/denton-parents-say-autistic-child-severe-bruises-after-school-officer-handcuffed.
 Matthew Martinez, “12-Year-Old with Autism Arrested for Using ‘Imaginary Rifle’ in Art Class, Family Says,” Fort Worth Star-Telegram, May 10, 2018:
https://www.star-telegram.com/news/state/texas/article210879114.html ; Maria Perez, “Texas Student with Autism Arrested for Allegedly Firing ‘Imaginary Rifle’,” Newsweek, May 12, 2018: https://www.newsweek.com/imaginary-rifle-autism-texas-923316.
 These and the following numbers come from Jessica Butler, “How Safe is the Schoolhouse?: An Analysis of State Seclusion and Restraint Laws and Policies,” published in 2017 for the Autism National Committee: https://www.autcom.org/pdf/HowSafeSchoolhouse.pdf.
 See for example, the cases of a little girl in Indiana: https://www.apnews.com/6c1bf5670c23465c9d48ce4a77634131;
And a little boy in Florida who spent all day strapped to a toilet training chair with his pants down around his ankles: https://www.jacksonville.com/article/20090320/NEWS/801237594.
 Jenny Abamu, “Children Are Routinely Isolated in Some Fairfax County Schools. The District Didn’t Report It,” on WAMU radio, updated March 13, 2019:
 Erin Jordan, “Senators Ask Federal Probe of School Seclusion Reporting,” The [Cedar Rapids] Gazette, June 3, 2018: https://www.thegazette.com/subject/news/education/senators-ask-federal-probe-of-school-seclusion-reporting-20180603.
 Jenny Abamu, “U.S. Schools Underreport How Often Students Are Restrained Or Secluded, Watchdog Says,” All Things Considered, on National Public Radio, haveJune 18, 2019—based on a report from the U.S. Government Accountability Office: https://www.npr.org/2019/06/18/731703500/u-s-schools-underreport-how-often-students-are-restrained-or-secluded-watchdog-s.
 Jenny Abamu, “U.S. Schools Underreport How Often Students Are Restrained Or Secluded, Watchdog Says,” on All Things Considered, on National Public Radio, June 18, 2019—based on a report from the U.S. Government Accountability Office: https://www.npr.org/2019/06/18/731703500/u-s-schools-underreport-how-often-students-are-restrained-or-secluded-watchdog-s.
 Schools general deny that restraint and seclusion are used as punishment, but it is hard to see how aversive actions that do not teach children anything (see below) are anything else.
 Hannah Grieco, “Restraining Students with Disabilities is Harmful,” The Baltimore Sun, April 22, 2019:
 Anonymous, “Seclusion as Punishment,” in the “We Always Liked Picasso Anyway” blog, October 3, 2013:
 U.S. Department of Education, “Restraint and Seclusion: Resource Document,” 2012, p. iii: https://www2.ed.gov/policy/seclusion/restraints-and-seclusion-resources.pdf.
After six months in three different psychiatric hospitals, my darling daughter is finally out and living at home again. She still suffers from PTSD (made much worse by the hospitals themselves), but at least she is able to be with her family and her dog, see her friends, and breathe the open air.
We are SOOOO happy!
“Autistic meltdowns may be frightening to observers, but at their most intense, they are nothing less than pure psychological torture for the person experiencing them. I feel as if I am caught in a war zone, terrified for my very life. My senses are on fire and I have very little control over myself.”
Schools are overwhelming places for autistic children–full of blinding lights, unexpected loud noises, bullies, and constant social, physical, and intellectual demands. It is hardly surprising, then, that these children sometimes have meltdowns in school settings. These may be relatively quiet affairs, in which the child rocks back and forth, covering his or her face or ears to shut out overwhelming sensory stimuli—some autistic people refer to this type of experience as a “shutdown,” as opposed to a “meltdown,” which is generally much more dramatic, involving screaming or uncontrollable crying, kicking, biting, punching, throwing various items, or self-harming. Other autistic people use the term “meltdown” for both types of reaction, because the internal experience is roughly the same in each.
Despite the fact that they occur frequently in school, many educators do not understand meltdowns or know how to deal with them. The most common misperception—shared by far too many ill-informed scientists as well as by many school personnel—is that an autistic meltdown is just an extreme form of temper tantrum. Meltdowns and tantrums may look somewhat similar—both involve screaming, crying, kicking, biting, etc. However, the two phenomena arise from different causes, run very different courses, and can be distinguished through careful observation. The conflation of meltdowns with tantrums far too often leads educators to characterize autistic children pejoratively, as “cunning” or “manipulative,” with all the negative consequences these labels entail.
Now temper tantrums really are manipulative behaviors, designed to gain attention, avoid unwanted demands, or obtain material rewards. Neurotypical children acting out in these ways will—even as they scream or kick–keep an eye on the people around them, to see whether the desired outcome is forthcoming, and will often adjust their behavior if one strategy is not effective. They are careful not to hurt themselves even as they flail around. Once their goal is achieved, the tantrum will stop. Autistic children seldom have genuine temper tantrums, for the simple reason that they lack the social skills needed to analyze and manipulate those around them. Most of the time, their disruptive behaviors fall into the meltdown category.
In contrast to a tantrum, a meltdown is an instinctive “fight or flight” reaction to an intolerably stressful situation. Unlike tantrums, meltdowns are unplanned and have no goal. As Geoff Colvin and Martin Sheehan have noted in their excellent book on preventing meltdowns in schools, “One of the defining characteristics of a meltdown is that the student is basically oblivious of anyone and anything in the environment.” The child suffering a meltdown never keeps an eye on the people around them to see how they react, cannot adjust his or her behavior to achieve a particular purpose, and cannot bring the meltdown to an end until it has run its course. Older children and adults may eventually learn to recognize the signs of impending meltdowns, and—if they are lucky—they may sometimes be able to head them off. Most schoolchildren, however, do not have this level of self-perception, and are generally unable to either recognize the signs of an approaching meltdown or take action to prevent it from happening.
It is extremely important to remember that autistic children (and their adult counterparts) do not enjoy having meltdowns—on the contrary, they find the experience frightening and painful. While autistic children do write about having meltdowns on various online fora, they seldom describe the experience itself, so I have relied here on what autistic adults have to say on the subject.
“I couldn’t stop the headache that built until my eyes wouldn’t focus properly; The thudding pressure between my eyes and at my temples. My thoughts started swirling like a Jackson Pollock, and I kept finding myself stuck in loops of fragments of sentences. I started unconsciously tapping my forehead with the knuckles of my right hand, whilst my left firmly held the back of my neck. I felt overwhelmed, and ashamed by that feeling. I felt lost and embarrassed. Thoughts were reduced to feelings (despite feelings being thoughts) I found it hard to do anything beyond feel pain. . . .
“There is a tipping point. A mental red zone. Once I cross into that zone, there’s no going back. . . . Panic. Helplessness. Fear. . . . There is emotion at the starting line, but a meltdown is a physical phenomenon: The racing heart. The shivering. The uncontrollable sobs. The urge to curl up and disappear. The headbanging. The need to hide. The craving for deep pressure. The feeling of paralysis in my tongue and throat. The cold sweat. . . . “
Autistic children experience meltdowns as a complete loss of control over their minds and bodies. Here are some children describing their experiences:
“We had a fire drill but nobody told me like i was told people where [were] going to do. I freaked out and started crying and pushing my hands against my ears. When we got outside i just sat down and rocked. I couldnt move. I think it was more of a shutdown. . . . The super loud noise is what made me have a meltdown.”
“When I was a kid my meltdowns were very violent, I would scream and hit things, crying and all sorts, scratch myself, hit my head against the wall, if anyone touched me it got worse. I would blank out and not remember anything, then finally fall asleep after crying so much I got a headache.”
“i was EXTREMELY passive [in school]. Every few years I would sort of snap and beat the piss out of someone that had been bullying me for too long. The first incident I don’t remember. All I remember is her . . . shoving my face in the dirt…and then I am in the car and my mom is saying “are you ok? why would you do that? are you OK???” over and over and over. The story is that I broke her arm. I did not believe them until I got back from my suspension and saw her in a cast. . . . I still feel really bad knowing I broke her arm. Who knows if it healed up properly, you know? It may still cause her grief.”
When the meltdown is over, autistic children (and adults) often have no memory of what happened. If they do remember, they usually feel deeply embarrassed about being so “out of control.”
“The reason why I feel so disappointed with myself after meltdowns is firstly because of the misery I cause others, and secondly because I can hardly believe how little control I have over my emotions…”
“I wish AS [autism spectrum] never involved having meltdowns. Why do they involve meltdowns? I feel so embarrassed of them all the time, but when I get in a mood and a panic about something, I can’t always help myself. They just happen on the spur of the moment.”
“It gets to the point that when I know [a meltdown] is coming, I start to feel ashamed preemptively. I’ve been told off for constantly apologizing, partly because I can’t figure out what to say (communication is conking out) and partly because I’m so ashamed.”
Despite what some scientists and teachers may think, it is obvious that no one would choose to have such frightening, often physically painful, and embarrassing experiences. The bottom line is that autistic children who melt down in school need help—not criticism or punishment.
 Tambourine-Man, in the “What Not to Do During a Meltdown—From an Autistic Adult” discussion on the Wrong Planet website:
 E.g., The Encyclopedia of Autism, edited by Fred Volkmar of Yale University, incudes an article by Aaron Stabel on “Temper Tantrums” full of the usual negative stereotypes of children who have “tantrums.” The Encyclopedia contains no article on meltdowns. See also Rachel Goldin, et al., A Comparison of Tantrum Behavior Profiles in Children with ASD, ADHD, and Comorbid ASD and ADHD,” Research in Developmental Disabilities 34 (2013), 2669-2675; Abigail Issarraras and Johnny Matson, “Treatment Approaches to Aggression and Tantrums in Children with Developmental Disabilities,” in Johnny Matson, ed., Handbook of Child Psychopathology and Developmental Disabilities Treatment (Cham, Switzerland: Springer, 2017), pp. 257-68.
 Dr. Clarissa Kripke, clinical professor of family and community medicine at the University of California San Francisco, “Understanding Autism, Aggression, and Self-Injury: Medical Approaches and Best Support Practices,” on The Thinking Person’s Guide to Autism website:
 Geoff Colvin and Martin Sheehan, Managing the Cycle of Meltdowns for Students with Autism Spectrum Disorder (Thousand Oaks, CA: Corwin, 2012), p. 145.
 Sofisol612, in the “What Does a Meltdown Look Like in an Adult Woman” discussion on the Wrong Planet website: https://wrongplanet.net/forums/viewtopic.php?t=337317.
 Cynthia Kim, “Anatomy of a Meltdown,” on the “Musings of an Aspie” blog, December 13, 2012:
 Pokelover14, in the “Did You Ever Have a Meltdown at School” discussion on the Wrong Planet website:
 Antisocial Butterfly, in the “Meltdowns? Fall Asleep/Tired Or Biting Meltdowns?” discussion on the Wrong Planet website: https://wrongplanet.net/forums/viewtopic.php?f=3&t=63131&start=15.
 blackcat, in the “Female Aspies Were You Violent As A Child?” discussion on the Wrong Planet website:
 crouton, in the “Anyone Else Feel Embarrassed/ashamed After A Meltdown?” discussion on the Wrong Planet website: https://wrongplanet.net/forums/viewtopic.php?t=140790.
 Joe90, in the “Anyone Else Feel Embarrassed/ashamed After A Meltdown?” discussion on the Wrong Planet website: https://wrongplanet.net/forums/viewtopic.php?t=140790.
 Callista, , in the “Anyone Else Feel Embarrassed/ashamed After A Meltdown?” discussion on the Wrong Planet website: https://wrongplanet.net/forums/viewtopic.php?t=140790.
I have been admiring this young woman’s work to stop climate change for several months now. Only yesterday did I learn that she was autistic. Here are her words of wisdom to the British Parliament:
“My name is Greta Thunberg. I am 16 years old. I come from Sweden. And I speak on behalf of future generations.
I know many of you don’t want to listen to us – you say we are just children. But we’re only repeating the message of the united climate science.
Many of you appear concerned that we are wasting valuable lesson time, but I assure you we will go back to school the moment you start listening to science and give us a future. Is that really too much to ask?
In the year 2030 I will be 26 years old. My little sister Beata will be 23. Just like many of your own children or grandchildren. That is a great age, we have been told. When you have all of your life ahead of you. But I am not so sure it will be that great for us.
I was fortunate to be born in a time and place where everyone told us to dream big; I could become whatever I wanted to. I could live wherever I wanted to. People like me had everything we needed and more. Things our grandparents could not even dream of. We had everything we could ever wish for and yet now we may have nothing.
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.
My darling, sweet, smart, kind daughter has been imprisoned (her word) in the psychiatric system for three months now. She has lost weight (and she didn’t weigh much to begin with), energy, her sense of identity, and virtually all hope. We see little chance of her getting out, because the system—with its constant accumulation of small (and sometimes large) cruelties—appears specifically designed to make an autistic adult crazy.
Leaving aside the constant loud noises, the lack of privacy, the fluorescent lights burning into her brain, and the dreadful food, there are an endless number of other problems that increase her anxiety and depression.
For example, she hasnt seen the light of day for three solid months, and that alone was driving her insane, since being outside has always helped relieve her stress. Well, yesterday her cold and uncaring psychiatrist finally announced that she would be allowed outside on their little patio. Sadly, however, she is still on one-to-one supervision, and must be accompanied by a tech everywhere. And the techs simply dont feel like going out, so—despite being promised the “privilege” of a tiny bit of fresh air—she remains stuck inside.
She is anxious all the time, and one of the few ways she has of relieving that anxiety is pacing the halls but the staff dont feel like walking with her. They would rather sit and talk to their boyfriends or girlfriends, or play games on their phones so they tell her to sit down and dont move, until she becomes so overwhelmed that she scratches her skin (again).
Another patient has been extorting possessions from her for weeks—threatening to hurt my daughter if she doesnt hand over her toiletries, art supplies, and the extra food we have brought in to keep her weight from dropping so fast. The staff are perfectly well aware that she is being threatened (after all, someone has to be within ten feet of her at all times), but they just look the other way. The social worker on the unit tells her that she has to be more assertive, but its hard to be assertive if you have no hope.
Today was the biggest blow, though. My daughter has had a private room for all these months for reasons that are not clear to us. Today, with no warning at all (so helpful for someone on the spectrum—*sarcasm*), she was moved to a room with another woman who has already made life miserable for two other patients. (For one thing, she likes to sleep in the daytime and stay up all night with the lights on.)
But the move was not the worst of it. The staff decided that it had to happen IMMEDIATELY, so they wouldn’t allow my daughter to carefully take down all the decorations she has taped to her walls over the months to make herself feel better. Instead, within a matter of minutes, the staff had ripped down all the photos of her dog, the pictures of flowers she has colored in, the cards from her friends, and the collage we made her of “people who love me.” Within five minutes the collage was shredded, the pictures and cards were torn, and one of her last layers of security was gone.
I’m done being circumspect about this. I’m going to start naming the names of the institutions and individuals who are torturing my child and me. The place where all this is happening is Andrew McFarland State “Mental Health” Center in Springfield, Illinois. (The quotation marks are because whatever else is going on in this place, it’s certainly not mental health). Supposedly this is the best of the state hospitals in Illinois, but not if you are autistic. And the psychiatrist in charge, who is quite skilled at prescribing medications (credit where it’s due), but who is otherwise rigid, cold, and unfeeling, is one Dr. Eberhardt, whom I very much hope burns in hell for all eternity.
Trigger warning: discussion of suicide, psychiatric abuse
It’s been five weeks now, and beloved daughter is still locked in a nightmarish “mental health” ward, with a sadistic psychiatrist who refuses to believe that she’s autistic (she was first diagnosed at age 3 and multiple times thereafter) and who punishes her for acting autistic (“you’re just looking for attention”).
Seven months ago she was raped while asleep in her own bed in her own apartment. So the asshole psychiatrist, who knows about this, assigns male techs to watch her shower and use the toilet, and sometimes to “observe” her overnight. On those occasions she forces herself to stay awake all night because she’s afraid of what will happen if she sleeps.
Her only comfort in the ward is a little stuffed dog toy—so they punish her by taking it away from her if she’s not “compliant” enough.
The idiot psychiatrist seems unable to grasp the fact that she is suffering the aftereffects of multiple traumas, and has decided that she must have borderline personality disorder—despite the fact that she doesn’t come close to meeting the DSM-V diagnostic criteria. So they have started hounding her to admit that she’s “manipulative.”
She wasn’t in very bad shape when she went into this place—she had made a kind of half-hearted suicide attempt. But now she is in a really terrible state of mind, and I’m afraid she really will kill herself from the trauma of this hospitalization.
We WILL sue the hospital. Any suggestions about individuals or organizations that would like to join in?