Tag Archives: autism

The Approaching End of a Heartbreaking Era

Click here to listen to the podcast version of this blog post.


When the Education of All Handicapped Children’s Act (EAHCA) was enacted as PL94-142 in 1975, it was in the face of enormous opposition from school district administrators and their attorneys who were actively refusing to enroll children with disabilities in our nation’s public schools. Many have remained employed in public education, stewing in their own bile over their legal “loss” while begrudgingly enrolling students with special needs.

The EAHCA was reauthorized as the Individuals with Disabilities Education Act (IDEA) in 1990, which has, itself, been reauthorized twice since then, the last reauthorization being in 2004. Clearly, Congress has no intention of returning to a time when discriminating against those with disabilities was perfectly acceptable.

I don’t know how many of you have experienced an employment situation in which people have been required to do something that they opposed, but it’s been my experience that some people in this position are more likely to sabotage any attempts to do things differently to “prove” it was a bad idea than to willingly go with the program. Some people are just sore losers.

In short, you’re not likely to get buy-in from people who had to be Court-ordered or required by regulation to do the ethical and responsible thing. It says something, anyway, about a person’s character when he/she forgoes ethical solutions for whatever reasons and, therefore, requires enforceable regulations that dictate what his/her behavior should be. Some peoples’ characters create a situation in which the behaviors normally associated with common sense and ethics become subject to regulation.

This is not specific to special education or the legal practices that surround it. This is human nature. Somewhere out there in the world is the person who justified warning labels on suppositories that advise they are not meant for oral consumption. Some people’s functional skills in various aspects of life, for whatever reasons, are seriously limited.

People tend not to make improvements when forced to, particularly when they perceive the improvements as a threat to their familiar, comfortable, self-serving routines. This, too, is human nature.

The problem in special education is that, following the passage of the EAHCA, too many people with chips on their shoulders were left over the decades in positions of authority in public education, passing their “insight” onto the people they were responsible for training and stacking the deck against the success of special education. In other words, ever since the passage of the EAHCA in 1975, there have been career public education administrators undermining the effectiveness of special education in order to win an argument rather than educate children, the latter of which being what we actually pay them six-figure salaries at public expense to do.

Continue reading

Mental Health Services for ASDs

Click here to listen to the podcast version of this post.

Sigmund Freud

Sigmund Freud (Source: Flickr)

Students with Autism Spectrum Disorders (“ASDs”), including Asperger’s Syndrome and Pervasive Developmental Disorder, Not Otherwise Specified (“PDD-NOS”), are often challenged by anxiety, which is an emotional health need. Many school districts contract with county mental health agencies or other providers for forms of individual psychotherapy services that may not be appropriate for some students with ASDs. Further, they may have no other service to offer to address ASD-related anxiety issues.

To add to the confusion, many county mental health agencies have recently re-identified themselves as county behavioral health agencies, yet they do not provide Applied Behavioral Analysis (“ABA”) or any other type of peer-reviewed behavioral intervention. ABA is supported by research to be effective in not only contending with undesired behaviors among persons with ASDs but also in providing explicit instruction to teach the skills these individuals lack.

Explicit instruction in social skills such as greetings, farewells, maintaining a topic of conversation chosen by another person, initiating conversations, and other aspects of human interaction have to taught to many children with ASDs as explicit, scripted procedures. Those procedures can then be generalized into real life by reinforcing them when they occur in natural settings and pointing out to the individual, in vivo, when he/she has engaged in the steps of the procedure so that he/she learns to recognize social contexts in which each script is to be applied.  Eventually, it becomes a learned, rehearsed strategy to deal with specific types of situations.

The degree to which persons with ASDs can master various scripted procedures, or even need this level of support, varies from individual to individual. The same for the degree to which someone with an ASD can generalize knowledge from one context to another, such as from the instructional setting to real life.  It’s called a spectrum disorder for a reason. The range of severity between mild and severe is quite broad and anyone can fall anywhere along it.

Traditional “talk therapy” that promotes developing one’s insight and insight into other people’s perspectives to sort out one’s issues is not necessarily appropriate for some individuals with ASDs. Because there are so many differences among people with ASDs, it’s not fair to say that no one with an ASD can benefit from traditional talk therapy. But, it is safe to say that there are a significant number of students with ASDs who truly cannot benefit from traditional talk therapy but still have emotional health needs that require mental health services as part of their special education programs.

The matter comes down to, “What form of mental health services are appropriate for students in special education who have ASDs and require mental health services in order to benefit from their IEPs?” Well, as with anything in special education, you can’t take a cookie-cutter approach and say one specific type of program will fix everything for everybody. For one thing, no such statement will ever be true; learners with disabilities, even within a population impacted by the same condition, are too diverse for one-size-fits-all programming. Federal law requires individualized programming for this very reason.

That said, there are certain approaches that are generally known to be more effective with students who have ASDs than others. These may work with many students with ASDs, but whether or not they will be effective with an individual student really depends on that student.  The following are possible methods by which effective mental health services can be delivered to some persons challenged by anxiety associated with ASDs.

Continue reading

Reconciling the Tragedy of Newtown, CT

Connecticut School ShootingThis is one of the most difficult posts I’ve ever had to write, but the challenges it presents to me are nothing compared to what the families of Adam Lanza and his shooting victims continue to suffer, as well as their communities. Maybe I’m feeling a touch of survivor’s guilt. Unlike the dead, I still have the ability to soldier on.

When I initially heard the news, it was over brunch with a colleague and our mutual client. My colleague saw the news on his smart phone and let out an audible, emotional gasp. When he told us what had happened, I didn’t feel anything at all; it was just information and wasn’t real to me, yet.

I was still trying to assimilate everything that had happened in the IEP meeting we’d all been in earlier that morning on the tail of a grueling week that had left me already emotionally exhausted. A mass murder on top of that was evidently more than what my nervous system could handle at the time. Since then, however, I’ve been following the news and the weight of the situation has sunk in quite deeply, now. I can’t read about the victims without tearing up.

An event like this hits me from every side because I have devoted my career to protecting children’s educational and civil rights. Among those is certainly the right to attend a safe learning environment that fosters their development and growth.

On the other hand, the evidence that has been publicized thus far reveals that Adam Lanza was disabled, possibly with a personality disorder, possibly with an autism spectrum disorder. The latter sounds more likely based on the descriptions given of him, though unless someone who has actually diagnosed him is permitted to disclose his confidential patient information, we’ll never really know.

What the reports from those who encountered Adam confirm was that he was socially awkward and withdrawn and that he evidently didn’t process physical pain the ways other people do, which put him at risk of unwittingly hurting himself during high-risk activities, such as soldering electronics. That sounds a lot like a sensory integration problem to me, which is not uncommon among those challenged by autism, along with the social skills deficits he was also reported to suffer.

Regardless of his diagnoses, it was clear to the outside observers who encountered him that he was impaired. And, while none of the lay people interviewed by the media thus far can point to anything that would have tipped them off that this atrocity was going to happen, we are not privy to what any therapists or others who interacted with him on a professional level may have had reason to fear from him.

Even if no one saw this coming, the fact that Adam remained socially impaired into adulthood reflects a lack of adequate intervention when he was younger, particularly given the peer-reviewed research regarding what works with children challenged by autism. The reports from those who encountered him in high school describe a young man who couldn’t relate to other people, would engage in elopement, and experienced meltdowns at school that “required” his mother to come to school and help calm him back down. The Associated Press described these latter experiences as “… crises only a mother could solve …” which reflects an utter failure with respect to school-based behavioral interventions and a gross lack of understanding regarding parental ability versus the mandated duties of the public education system.

I’ve lost count of the number of students I’ve represented whose schools have chosen to call parents away from their jobs in the middle of the day – and parents who have lost their jobs as a result – because it was less costly to the local education agencies to call the parents to come intervene than to staff these students’ programs with expert personnel. Unless the parent has a BCBA, the parent is not the person to call when behavioral problems occur and it is unethical and unlawful for school districts to shift that burden onto parents.

The special education advocate in me finds this outrageous and inexcusable. Just because no one necessarily saw Adam’s potential for murder when he was a public education student with special needs is no excuse for having failed to serve him when the opportunity presented itself to do so. When given the opportunity to prevent this from happening, nothing appropriately effective was done. The burden was shifted to his mother, who ultimately became his first murder victim. Clearly, this was not a crisis that only a non-expert, gun-collecting mother could solve.

While I’ve yet to see evidence that Adam was on an IEP while in public school, based on the descriptions given of him in the media by those who knew him at the time, if he wasn’t on an IEP, it was the world’s biggest child find violation. I have to believe he was on an IEP when he was a public school student.

Continue reading

“Velcro® Aide” vs. Learning Facilitator

Click here to download the podcast version of this article.

There is a realm of conflict surrounding the use of 1:1 aides in special education and many local education agencies (“LEAs”) have developed their own assessment protocols to determine when a child really needs an aide to try and rein in this issue.

Sometimes these assessments just turn into a means of justifying to the parents a decision against aide support that was actually made by the LEA for fiscal reasons, so there are still issues with these types of aide assessments that need to be worked out.

Because these are LEA-made evaluations that are not bound by regulation and they aren’t scientifically validated standardized tests, LEAs can make them up however they want and some are better at researching best practices than others. But, even if it’s the best aide assessment in the world, none of that makes any difference if the aide support a child is given isn’t used well.

Continue reading

Parents in Crisis Can Be Vulnerable to Predators

There has been a tremendous movement among a group of special education lay advocates across the United States and beyond to get to the bottom of a very troubling situation involving an individual who claims to be a highly successful and renowned special education advocate but whose claims cannot be substantiated and, in fact, appears to have defrauded a number of parents of children with special needs, particularly targeting high-profile autism-related seclusion and restraint cases. This individual, who goes by the name of Michael E. Robinson, Sr., is suspected of being located in Redding, California, based on the physical location where the phone numbers he gives out are installed.

Robinson was previously located in Hawaii, so it seems. He claims to be located in Washington, DC, Arizona, Hawaii, and California. He has claimed to be a lobbyist (not registered); a special education lay advocate and/or attorney (he’s claimed both) with years of experience with due process cases and litigation going all the way to federal court (no record of him involved in any special education due process or court cases could be found); a medical doctor (there is an autism specialist also named Michael Robinson whose work Michael E. Robinson, Sr. has attempted to claim as his own); and, of all things, a NASCAR racer.

He’s also claimed that he has epilepsy and was given a wolf as a service animal because wolves can allegedly detect the onset of a seizure before it happens, thereby making them superior service animals – forget the fact that it’s not legal to have a wolf as a service animal. And on and on. His behavior seems indicative of a narcissistic personality disorder and an absolute disregard for the consequences of what he is doing.

It’s easy now that so many people have come out of the woodwork to share their Michael E. Robinson, Sr. stories and much of his story has now been pieced together to look at the big picture and reach the conclusion that Robinson is up to no good. He’s solicited money from several parents, apparently. He’s also requested copies of legal documents in individual student’s cases from parents to allegedly use for his “lobbying” efforts, only to turn around and copy and paste from these documents to attempt to misrepresent the work of other advocates and attorneys as his own to his next set of victims.

His M.O. is apparently to collect enough information from past cases to be able to initially convince parents in newly developing cases – usually horrific situations in which the parents are in dire need of technical assistance – that he is experienced and can help them. He commiserates with them over the injustices they have suffered and tells them not to worry because he’s going to take care of things for them. Then he takes whatever money they’ve given him and copies of their records and is never heard from by them again. He seems to particularly seek out single mothers who are emotionally vulnerable as they fight to protect their children with disabilities from harm and have little to no support from their children’s fathers.

As a special education lay advocate for over 18 years and a paralegal in special education-related litigation for the last 5 years, I have to say that the prospect of someone using special education lay advocacy as a vehicle for running a con is particularly disturbing. While it’s expected that different advocates have different styles and ways of going about things, this is well beyond anything like that.

What is so damaging is that the child who was in such dire need that his/her case caught Robinson’s eye continues to go unserved. Robinson’s advocacy, such as it is, fails to achieve appropriate outcomes, based on the reports coming in from families who claim to have been taken advantage of by him.

This hurts children with special needs overall by undermining the credibility of lay advocates everywhere. Every time I go into a school district in which I’ve never advocated before, I find myself having to prove that I’m not some crazy person or someone with an axe to grind. The expectation maintained by many school districts is that all advocates are adversarial jerks and a righteous pain in the keister. It usually takes months of working with an IEP team in a district to which I am new before people finally figure out that I’m just trying to solve problems and facilitate a rebuilding of trust between the school district and the student’s family and that I’m only going to pursue accountability if the school district personnel keep failing to perform their mandated duties.

But, when I have to follow behind someone calling him- or herself an advocate who has behaved disreputably, demonstrated a clear lack of knowledge regarding what constitutes an appropriate IEP, and antagonized the situation to such an extent that a power struggle has ensued between him/her and the school district, I am put at a tremendous disadvantage. The time I have to invest in proving that I’m not going to do the same thing is time that could have otherwise been invested in properly educating my client.

I want to make clear, though, that very few advocates are so lacking in knowledge and so adversarial that they do more harm than good. Mr. Robinson is the exception, not the rule. Nonetheless, parents need to be diligent about making sure that whoever represents them is on the up and up. When I meet with parents for the first time, they will often tell me that they Googled me beforehand. I’m totally okay with that; there’s a pretty good chance that I Googled them, too. Advocates have to protect themselves from shiesters, as well.

To read more about the evidence compiled against Michael E. Robinson, Sr., see:

US GAO Seclusions & Restraints Report

The United States Government Accountability Office (“GAO”) released its report Seclusions and Restraints: Selected Cases of Death and Abuse at Public and Private Schools and Treatment Centers in May 2009. As Congress contemplates new federal legislation to contend with this societal atrocity, we thought it was pertinent to review GAO’s findings and remind ourselves why this is so important.

Examples of Case Studies GAO Examined:

Victim Information School Case Details
Male, 14, diagnosed with post traumatic stress Texas public school – 230 lb. teacher placed 129 lb. child face down on floor and lay on top of him because he did not stay seated in class, causing his death.- Death ruled a homicide but grand jury did not indict teacher. Teacher currently teaches in Virginia.
Female, 4, born with cerebral palsy and diagnosed as autistic West Virginia public school – Child suffered bruising and post traumatic stress disorder after teachers restrained her in a wooden chair with leather straps described as resembling a miniature electric chair for being uncooperative.-School board found liable for negligent training and supervision; teachers were found not liable, and one still works at the school.
Five victims, gender not disclosed, aged 6 and 7 Florida public school – Volunteer teacher’s aide, on probation for burglary and cocaine possession, gagged and duct-taped children for misbehaving.- No records that school did background check or trained aide.

– Aide pled guilty to false imprisonment and battery.

Male, 9, diagnosed with a learning disability New York public school – Parents allowed school to use time out room only as a last resort,  but school put child in room repeatedly for hours at a time for offenses such as whistling, slouching, and hand waving.- Mother reported that the room smelled of urine and child’s hands became blistered while trying to escape.- Jury awarded family $1,000 for each time child was put in the room.

Just to be clear, these are not isolated incidents. GAO tracked hundreds of cases for the purposes of its report, which you can read in full by clicking here.

Back during the 2002-2003 school year, when our founder, Nyanza Cook, was researching how to start a non-profit advocacy organization, she received a phone call one night from her family in Texas.  They knew that she was looking to start what has since become KPS4Parents and wanted to let her know of something that had happened in their local community near Ft. Hood. As much as she had her own motivations for starting our organization based on what her own household here in California had been put through, the story from her family back in Texas pretty much clenched it.

Her nephew, who was a special education student placed in a special day class at the time, was put on the phone with her, clearly distraught. She asked him what was going on and his reply was, “They killed him, Auntie!  They killed him!”

After speaking with him and other family members, this is what she got:  another special education student in her nephew’s class had become non-compliant that day and unable to focus on his school work. In an effort to compel him to stay on task and comply with adult directives, school site staff withheld food from him, refusing to let him go to lunch until he completed a task he’d been requested to complete.

Somewhere around 2pm, he decided he was hungry and was going to find food whether the adults in the room liked it or not.  When he attempted to leave the room, he was tackled to the ground by staff who piled on top of him.  According to Nyanza’s nephew, he gasped a few times that he couldn’t breathe and then fell silent.

When he stopped struggling, staff climbed off of him only to find him limp and lifeless.  He wasn’t breathing.  Staff ended up calling 911 and attempted to resuscitate him.  His classmates looked on in horror throughout the entire incident, including Nyanza’s nephew.

A friend of Nyanza’s family was an emergency room doctor at the hospital where this young man was transported.  He later reported to her that the school district’s lawyer got to the hospital just before or at the same time the ambulance did and did everything he could to try and convince the hospital to call time of death subsequent to the young man’s body’s arrival at the hospital when, in truth, he’d died on school grounds and emergency personnel had not been able to revive him.  Nyanza’s emergency room doctor friend was indignant that the lawyer had even dared to ask.

None of this made it into the local news.  Nyanza’s family didn’t know this young man’s family personally and before too long, the whole thing had been swept under the rug.  It’s unknown if the District settled with the boy’s family or what became of the teachers involved in the incident. However, after reading Case #2 of the GAO report (the first case cited in the table above), the similarities are uncannily eerie and I have to wonder if it isn’t the same case.

Nyanza’s nephew was terrified to go back to school for fear that he would be killed, too.  He was understandably traumatized.  That is an aspect of the harm done when seclusions and restraints are used in the school setting:  the emotional impact on the children who witness take-downs and adults physically manhandling other children.  That’s probably worth a study in and of itself.

What the GAO report makes clear is that this was hardly an isolated incident.  But, the taxpaying public does not finance the public education system so that it can kill children; the public education system is supposed to be educating children.

At the time of the May 2009 report, there were no federal laws regulating the use of seclusions and restraints in public or private schools.? There are no such federal laws today, though legislation has been proposed. State laws were at the time of the report, and still are, highly divergent.

GAO reported that almost all of the hundreds of cases of the use of seclusion and restraint in school settings that its research uncovered involved children with disabilities.  GAO found that there was no national effort to specifically collect data and track the use of seclusions and restraints in the school setting, requiring it to conduct exhaustive research in order to identify cases of such.  It wasn’t that the cases hadn’t been reported, but the way that data was collected by the involved agencies resulted in the seclusion and restraint cases getting mixed in with many other different types of cases, requiring GAO investigators to go through each case to individually identify which ones involved seclusions and restraints in the school setting.

When I first got involved in special education advocacy, I was working with families of children with dyslexia who weren’t receiving adequate reading instruction and kids with ADHD who needed IEP supports to help them with their organizational skills.  Never in my wildest dreams did I ever think I’d end up working cases of where:

  • An 8-year-old nonverbal boy with autism who loved to play “chase” would do what the adults around him mistook for elopement but was actually his way of initiating a “chase” game, only to be tackled to the ground by his principal on a gravel driveway in an effort to prevent the child from leaving the campus (which he wasn’t actually trying to do), resulting in significant bruising to they boy’s chest.
  • A 14-year-old mostly nonverbal boy with autism who became non-compliant with staff directives when his teacher unexpectedly left early for the day (which had not been part of his visual schedule and, thus, he’d been unable to predict), resulting in an unlawful restraint in which a large male staff member twisted the boy’s arm behind his back and broke it, causing nerve damage and requiring surgery to repair.
  • A 15-year-0ld boy with bipolar disorder and post-traumatic stress disorder (from having witnessed his father’s suicide) who was directed into a time-out room alone with his male ESY teacher (an aide on a 30-day emergency teaching credential), who then compelled the student  to perform oral sex upon him behind a locked door.
  • An 8-year-old boy with autism and mild mental retardation who received special education transportation services on a large bus filled mostly with emotionally disturbed children being transported to an ED program on the same campus where his learning handicapped class was located, only to be forced to regularly orally copulate a male ED peer in the back of the bus in the absence of a transportation aide and out of sight of the bus driver.

The latter case was peer-on-peer violence, but it was the lack of appropriate supervision that allowed it to happen. Passiveness on the part of adults can result in just as much harm as outright aggression.

The point is that children with disabilities are at a higher risk of being preyed upon and victimized by people who should know better or peers who themselves are not receiving adequate intervention. This continues in one form or another into adulthood where cognitively impaired adults are put up to committing crimes they don’t understand so that other people will “like them” or are taken advantage of by scam artists and are economically abused.  Women with mental disabilities can easily end up in the sex trade.

What is really scary is when a person with mental deficiencies is repeatedly exposed to violence and learns through experience to behave violently him- or herself.  Trying to unteach that learning when the person has reached adulthood after a lifetime of inappropriate, violent behavior, can only be achieved through very time-consuming, involved, and usually very costly, direct instruction.  The long-term consequences of seclusion and restraint are far-reaching and devastating.