Tuesday, May 31, 2011

Moving Stinks

Everyone knows moving is a pain. For weeks before (and weeks after), disarray is the norm. We have boxes about the house, and we've barely started organizing for a long-distance move. In coming weeks, we need to donate, sell, and dispose of as much as we can without parting with anything we'd later miss. Of course, I'm the sort of person to miss anything we leave behind.

Coordinating the move is practical logistics: events have to happen in near-perfect order. My wife and I over-plan, and yet we will both feel unprepared until the move is complete. We will worry about every detail between now and August.

The cats hated today, which began with two workers installing five new interior doors. I disliked it, too, but it sure was fast and painless versus us doing the work. But, Pumpkin Kitty ("PK") was truly annoyed. I have the two puncture marks on my right hand (thankfully, the less-sensitive hand) where PK bit down and wouldn't let go. He is still hiding several hours later.

Moving also means dealing with the real estate agent, the mortgage broker, the lender, the home inspector, and the appraiser — all from a time zone and 530 miles away. This leaves us in the position of having to trust men and women we've never met. It's a strange feeling, but sometimes you have to take a leap of faith in human nature.

I'm trying to focus on projects to complete before moving. It is tough to focus with the impending move on my mind. Focus is a challenge for me on good days. Now, focus is even more challenging.

I remember how much I hated moving to and from college every year. I don't know how I managed, but I'm sure the idea home was "only" four hours away helped. Forget something? Drive home over the weekend. A household move is different.

If I don't post blog entries on a regular basis, the move is probably why.

Thursday, May 26, 2011

Revised Answer to Autistic v Typical Child

I didn't answer one of the submitted questions as well as I should have. Here was the key to the question and the one I should have addressed:
My husband thinks I am wrong to 'expect so much' from her. I think that she's very intelligent and that I would be failing her if I just said 'she has autism' every time….
Am I in the wrong? Am I damaging her by treating her like a typical kid?
Here's the new, improved answer: No.

It is unlikely you are damaging any child with a disability by trying to treat that child as much like other children as possible. I should include a dozen caveats and warnings, but most are commonsense. Some disabilities do limit what we can do, but not what we can accomplish.

We "mainstream" students in special education because we know that separate is not equal, because the experiences of students in a "special" class do differ from the experiences of students in a "normal" class situation. "Normal" simply means the average experience, the standard experience of the majority. If you don't learn how to deal with the standard experiences of daily life, you are at a distinct disadvantage as an adult.

You cannot learn how to navigate social settings without experience those settings. You cannot learn social "norms" without observing those norms and being asked to follow the rules appropriate to each settings.

Some children, teens, and adults will not master the rules for all contexts. We must appreciate there are limits to what some individuals can master, socially, emotionally, and intellectually. There are social skills and emotional skills I will not master. However, I wouldn't know my weaknesses without experiencing those deficits. You don't know what you can or cannot do without trying -- and then you adapt accordingly to accomplish goals.

My parents exposed me to Cub Scouts, Little League, and a local chess club. Though I received external supports from a "resource specialist" in elementary school, and did use "independent study" several times in high school, for the most part I was among peers. No, it didn't always go smoothly, but social settings don't always go well for "normal" people either.

I encourage parents to avoid coddling, babying, protecting, sheltering, or whatever else you want to call the impulse. Your disabled child will experience the joys and disappointments, just like most humans. The experiences will be different, yes, but they are valuable experiences dealing with the world.

The rules do not change for autistic people: the law is the law, ethical guidelines are still enforced at work and school, and social norms remain in place. People might tolerate the mistakes and misunderstandings related to autism or another cognitive disability, but we do not tolerate blatant and knowing misbehavior.

Too many of the autistic teens and young adults I meet have been allowed to do whatever they want and use "autism" as an excuse. Sure, they are a minority of the high-functioning population, but you can be "autistic" and still be a troublemaker. It isn't as if "autism" elevates a teen above the problems of other teenagers. Teenagers, with or without autism, often ignore or fail to anticipate the consequences of their actions. But, they do have to learn there are consequences.

So, no… you are not going to break, damage, or emotionally scar most children or teens with a disability by trying to be consistent as a parent. You do have to consider the individual nature of the child -- but you must do that with any child. No two children are alike. I suggest being cautious, mainly because the autistic child or teen does perceive the world and emotions differently. My parents soon realized that Cub Scouts was not a good "fit" for me. There are plenty of young men for whom scouting isn't a match. No major harm done.

Only the parents and support professionals familiar with a child can decide what is an appropriate way to adapt parenting methods to that individual child. What's really impressive is how resilient most children are.

Wednesday, May 25, 2011

Should an Autistic Child Be Treated Like a Typical Kid?

From the "Ask a Question" inbox:
Thank you so much for sharing your thoughts and experiences. I have a question concerning my own 9 year old daughter, similar diagnosis to your own. She is considered HFA, though her abilities and reactions are 'scattered all over the spectrum' (low, mid, high functions).

My question is: Am I wrong to treat her as I do my other children? She is the oldest child of 5. I do not give her a lot of leeway based on her diagnosis--what I mean is, her autism is not allowed to be an excuse for bad behavior.

She is aware of what is acceptable and what is not--no hitting other people, no cursing, no destroying the house-- and she receives the same types of punishments as her siblings. We do time outs and grounding from favored activities. Spanking is very rare and only as a last resort (she received a pop to the bottom for stabbing her brother with a fork)

I realize the difference between bad behavior and meltdowns from stress, along with other coping mechanisms in autism. My husband thinks I am wrong to 'expect so much' from her. I think that she's very intelligent and that I would be failing her if I just said 'she has autism' every time she misbehaved without giving her punishment or rewards.

Am I in the wrong? Am I damaging her by treating her like a typical kid?
My Response
The more I consider this question, the less certain I am that there is a "right" answer without knowing the child and family. That might seem evasive, a "cop out" to avoid answering, but I am going to explain why there is no one approach to this question.

First, I don't like any physical punishment because I don't even like the notion of being touched. Sensitivity to touch aside, I have a visceral reaction to even the slightest slap of a child's hand. I cannot explain it, but it causes me anxiety and pain to even contemplate such actions.

Being touched upsets me so much that the idea of a slap is unfathomable. That might be something to consider. I still recall one spanking from a grandfather. I cannot clear that memory from my mind. It's a horrible memory, even though he probably did nothing unusual for the time or situation. I had refused to eat the dinner prepared by my grandmother and demanded something I would eat. It might be one of only one or two times he even raised his voice, but that's a memory etched into my mind deeper than the hundreds of things he did for me. Maybe your child is different, but a visual memory like mine gets stuck on the negatives for decades… and I do mean decades.

Second, I memorize what is "right" and "wrong" but I don't always understand why something is deemed right or wrong. Worse, some actions that are "wrong" in one situation are "right" in another, and vice-versa. Ethical guidelines can be confusion and annoying. I have adopted a rigid system that makes some sense to me, even if it isn't always "right" -- at least it is consistent.

Since I do not like to see anyone or any creature hurt, that's the foundation for my ethical system. You hurt anyone or anything, you're "wrong" in my book. Period. I don't make exceptions and I don't forgive. I definitely don't forget, either. Even when I want to forget, I cannot.

I do not like lying or omitting facts. Truth is absolute to me. This means "white lies" and "social politeness" upset me, deeply, so I'm never going to be socially "right" in some settings. If I don't like someone or something, I will say so.

Most autistic individuals I've met and interviewed report similar ways of determining right and wrong. It's not instinctive and we seldom adapt well to changing situations. Wrong is wrong, period. But, that might not be the case for some individuals with ASDs. I know parents tell me about teens with Asperger's Syndrome who lie, cheat, and get into trouble at school. (I suppose you could call that a "normal" teenage experience.)

Without knowing a child, I cannot guess what he or she considers right and wrong. I have no idea how that person constructs an ethical system to guide choices and actions. Some autistics do create elaborate systems and navigate moral choices easily. Others, like me, struggle daily to comprehend actions. Many choices I make in a day are made only after tedious deliberation. I spent nearly 30 minutes today trying to decide which "must finish" task for two different employers had to be completed first. The debate had to be resolved by my wife because I was "intellectually paralyzed" by the various measures of what was the "right" thing to do.

As a child, my rigidity would get me in trouble as a "tattletale" or "snitch." To me, rules are rules, period. I've quit a job where I wasn't comfortable with the lack of ethical behavior. I don't like it when rules are ignored or even openly dismissed as meaningless. Why have rules if you don't follow them?

I do not believe in excusing "bad" behavior, if the individual has a clear understanding of why the action was wrong. If the person can give you a detailed explanation, from his or her perspective, then time outs, groundings, and other punishments seem not only reasonable but possibly necessary. I'm not sure how to deal with someone unable to explain right and wrong at all. I've met children unable to comprehend their actions, though, and I'm not sure any punishment would serve a purpose. Moral reasoning is necessary to construct an ethical system, even a rigid system like mine.

Time outs, sitting spots (steps are common in the U.K., corners in the U.S.), loss of privileges, and other consequences for negative behaviors seem reasonable and practical to me. But I am not a parent. I'm only a teacher -- and not a teacher of young children. By the time I meet students, they have developed ethical systems. Some are still developing, as young adults, but the foundations are present.

My advice is to constantly evaluate how well your child constructs ethical guidelines and moral reasoning. You cannot expect punishment and rewards to be effective without clear comprehension of those measures.

I teach a seminar session on legal compliance and written documents. To me, the law becomes what is "right" unless it cannot be logically defended. Even when a law doesn't seem logical, I would rather argue for changing it before I would consider breaking a law. I even try to drive the speed limit at all times. Colleagues don't understand such an approach to life -- they tell me disobedience is essential far more often than I believe it is. I believe I'd only break a law if it contradicted a higher principle in my system. (Protecting life always trumps every other law, regulation, or rule.)

This doesn't really answer the question, but that is my answer: every child, every individual, evolves morally and ethically at a unique pace and to a unique depth. I will never have the nuanced depth of some people. It simply isn't going to happen. But, that doesn't mean I cannot and should not be expected to behave in a socially appropriate, ethically appropriate manner.

My mother reminds me that parents and teachers get to determine what is "appropriate" in their house or classroom. I've never managed to master that concept. Even now, I manage to violate the norms of some colleagues. I struggle constantly with changing rules and expectations. At some point, I started to assume I'll be reprimanded often and not always understand why.

It might be one more reason I prefer to avoid social interactions and settings with other people. Why risk getting into trouble? After enough trouble in school, I reached a point of avoiding the risk of being reprimanded. I don't break rules out of disrespect, I simply don't always know the rules have changed from class to class or office to office.

Again, I know none of this is an answer. I can only tell you that I still struggle daily with understanding the rules of daily life and have been in serious trouble as a result. It's not easy to explain to other people, either, because rules are so natural to my colleagues -- even those colleagues known for breaking rules. (It is clear that there are rules to breaking rules. I don't even want to try to learn that system.)

(Some) Parents vs Self-Advocates

Maybe I'm even more of a curmudgeon after three hours of sleep, but during an exchange with the parent of an autistic child early this morning I found myself thinking, "How stupid can you be?" That is what I thought, too. Not "how ignorant" or "how mistaken" but bluntly and definitively "how stupid" this parent seemed at that moment.

I know the following is a rambling post. I'm tired and fuming a bit. If the rant is incoherent, I apologize; this is definitely a rant.

Being exhausted, I'm probably not thinking as clearly as I should, but I find myself at odds with a vocal group of parents somewhat regularly. The particular topic of debate doesn't matter at the moment; what matters is that the feuding camps of the "autism community" are precisely that: feuding camps.

I do not pretend to represent individuals with Kanner's classic autism disorder. I do not pretend to be a parent. I am precisely what I claim to be: one person with experiences of physical and neurological disability (which I'd argue are physical, too) fortunate enough to complete a university education.

When I speak to groups, I remind them that 90 percent (or more) of what I address deals with a small segment of the autistic population. I work with potential and current college students. Let's get real: the overwhelming majority of autistic individuals will not earn university degrees. Only 38 percent of adults in the United States have college degrees (including two-year diplomas), so simple logic dictates that only a fraction of autistic students will reach that goal.

Working with that fraction of a fraction of autistic students, sometimes called "twice exceptional" students, I encounter many unrealistic parents. Not merely unrealistic, but pushy and rude could describe these people. You can read into that some of what this parent was arguing.

Universities are not for everyone. In the U.S., you have the "right" to apply to a college or university, especially public institutions, but you do not have the guarantee of either admission or graduation. You must meet the academic standards. You must attend class. You must have the abilities required within a degree program. There are plenty of "able-bodied" students with no known challenges who do not succeed in academic programs. Guarantee of access is not guarantee of success.

I do not "hate" the severely cognitively disabled. I dislike the labels, but there are some cognitive challenges that limit access to higher education and some careers. I am not against anyone receiving reasonable services and accommodations, matched to the capabilities of that individual. That I have chosen to work with one small group does not indicate anything, nothing at all, about my views on autism and disability in general. (And my work doesn't include whatever I do for others on my personal time. Much of that isn't shared because I don't want to share it with the public.)

Autistic self-advocates are, generally speaking, part of the fraction of a fraction with whom I work. Some of these self-advocates, contrary to the nonsense on some websites, are physically disabled and dealing with many challenges in addition to an autism spectrum disorder. To dismiss self-advocates as "not autistic" or "selfish" (the worst insult I can imagine) only puts the self-advocates on the defensive. The result is more debate, more feuding.

I'll admit that many self-advocates have adopted a confrontational style of which I do not approve. I am not going to author a screed on being "autistic" vs. "living with autism." I am not going to be leading any marches or protests. That is not my style. I don't demand product boycotts and only one or two groups so offend me that I wouldn't engage them in dialogue.

What I do demand is respect for the students and adults with whom I work. Yes, they are fortunate to be able to pursue a post-secondary education. But do not imagine for a moment that their lives are wonderful or just like the sitcom "The Big Bang Theory." I know my life as a student was nothing like television or movies.

Some parents, and it is a minority, believe it is essential to criticize and tear-down self-advocates. They want to remind everyone (including me) that self-advocates don't have "real" autism. One line from this morning captures that perfectly: "Aspergers is not autism."

I'll admit that I believe there are several "autisms" and that Asperger's Syndrome does not have the same etiology as classic autism, but does not give me or anyone else the standing to publicly dismiss someone as not really autistic. What is an authentically autistic person? Don't pretend to be able to diagnose (or "un-diagnose") anyone with an ASD.

University students with ASDs have enough to deal with without advocates telling these young men and women that they are not really autistic and don't know anything about autism. When I state that I work with students with autism, that is technically and legally correct as far as I'm concerned. I'm sorry "autism" means one thing to some people, and only one thing.

Such a narrow definition of autism, excluding many eloquent self-advocates, is "stupid" in my mind. I managed not to state so this morning (barely), but I thought it. And I'm still thinking about it. I know that's not nice or understanding of me, but it isn't nice to dismiss the experiences of a group of individuals, either.

Tuesday, May 24, 2011

Children with Special Needs Become Adults

Last night I spoke to a group of educators, support specialists, and parents of teens with autism spectrum disorders. One of the key points during the conversation was that children with special needs grow up and become adults with special needs. Unfortunately, it is easier to raise awareness of children via the media than it is adults. A child with special needs is a great "feature story" on the local news. A child is also great for fundraising posters and images on websites.

Adults with disabilities remind other adults that life is unpredictable, even cruelly absurd. Many disabilities appear as adulthood begins. Schizophrenia is one mental health condition that often appears after the age of 18, for example. Physical challenges, such as multiple sclerosis and Parkinson's also appear in adulthood. Disabled adults are a reminder that no one is impervious to life's risks. Life itself is always terminal.

Children with autism now receive more supports than ever before, but many autistic adults feel invisible. Autistic adults face high unemployment (only 17 percent find appropriate employment, according to a U.K. study), social isolation, and, often, a number of potential coexisting conditions. Many of the autistic adults I've met also deal with seizure disorders, social anxiety, sensory integration issues, and learning challenges.

Because autism can affect social skills and executive functions, adults with ASDs often fail to seek the services and medical care they desperately need. Adults with special needs often need minor, but essential, guidance to obtain services and supports. Organizations serving adults have difficulty explaining these unique needs.

Raising money to fund adult services is not easy. A few parents have told me, bluntly (and wrongly), that it is "too late" to help many adults with special needs. I refuse to believe that. Plus, these parents need to consider the likelihood that their sons and daughters are not going to be "cured" magically before adulthood. A child with special needs is going to be an adult with at least some unique needs.

Thankfully, most parents do realize they need to plan for their child's future. Parents of adults with disabilities are emerging as vocal advocates for the disabled, paving the way for those with young children and teens. Only a few decades ago, autistic adults, those with Down syndrome, and many others were "hidden away" in "care facilities" that offered anything but care.

If you are interested in supporting adults and their efforts to become fully integrated members of our communities, please consider The Arc Foundation or its regional chapters:

Saturday, May 21, 2011

The Need to Control a Physical Space

The following question was submitted via the "Ask a Question" page:
My 9 year old son has PDD/NOS and gets very upset when his room is clean and organized. He told me tonight that it makes the world feel all wrong, and makes him very unhappy to the point of tears. When I say messy, I mean there are toys on every spot on the floor, flat spaces and even old papers jammed anywhere. Can you possibly explain why this is comforting to him? Thank you so much!
Disclaimer: I'm a language education specialist, not a psychologist — I have the minimal required background in psychology for special education. I'll have to discuss this question with a colleague in the future so I can answer more completely. I can offer only what I do know with caveats.

Many of the students and adults I have met with autism spectrum disorders have been diagnosed with co-morbid conditions such as OCD, PTSD, SAD (social anxiety disorder), and GAD (generalized anxiety disorder). While other conditions are also commonly diagnosed (ADD/ADHD), the situation described above by the mother seems most similar to the anxiety responses some with ASDs experience.

There is some debate as to whether anxiety is a component of autism, caused by autism, or co-morbid. This is an academic debate, since the treatments for the anxiety symptoms remain the same regardless. The most common treatment for anxiety is now medication, accompanied by counseling. Unfortunately, parents and students tell me the treatments have limited success. Sometimes, the results are amazing, so they are worth a try.

Why does anxiety lead to apparent chaos in the child's surroundings? That's a bit easier for me to address, because I can relate to the underlying impulse.

People with extreme anxiety try to establish control over their environments. In extreme cases, they turn to trying to "control" their bodies — we find "cutters" and those with eating disorders have high levels of anxiety according to various measures. Self-harm or self-injurious behavior (SIB) is often a sign of one of the anxiety disorders (such as PTSD or OCD), and we know that self-harm also accompanies autism across the entire spectrum. Depression, which also has an elevated rate among people with ASDs, can also lead to self-harm and OCD-like symptoms.

When there is nothing else to control, there is the self. I've wondered how feeling pain can be relaxing, but it is for many people. Sadly, caged animals engage in similar behaviors. I wonder if there's a sense of being trapped by circumstances; it's impossible not to feel trapped or limited at times with an ASD.
Controlling objects or your space seems a better response to anxiety than SIB. Controlling a space can range from obsessive arrangement of items to hoarding. I've met some autistic teens and adults with an impulse to maintain perfect order. A common example is counting items and aligning them repeatedly. These behaviors create a sense of order and control.

Collecting or hoarding is also employed to restore a sense of order and calm. By spreading items about a room, often on the floor, but it isn't uncommon to place items everywhere and anywhere possible, this puts everything within sight. The individual has total control because everything is within his or her domain.

I need order. I have to feel organized or I cannot relax. There are days when I inventory my books, pens, notepads, or other possessions. Spreading items out on a table or the office floor is reassuring.
The need to see everything might pass as the young boy ages. If not, then an evaluation for anxiety should be considered. There's nothing unusual about anxiety accompanying an ASD. The treatments often address not only the spatial control, but might help relieve other symptoms associated with the ASD.

A family counselor, ideally an autism specialist, might have additional suggestions for dealing with the spatial control impulse. Some treatments include slowly concentrating where items might be placed. Other treatments try to shift the hoarding to more "acceptable" organizing habits. (I use "acceptable" because really this is only a change in how the anxiety is expressed — but one other people find less disturbing.)

As an education expert, I'd ask the parent what other spatial control behaviors are present. Does the child organize food? Does he count or engage in other repetitive routines for comfort? Does he panic when schedules aren't rigidly respected? Are there any physically repetitive routines, such as tapping or rocking (often called self-stimulation)? These are all potential signs of anxiety.

If there is anxiety, it might also be advisable to determine if there is a cause or trigger beyond the ASD. For me, sensory overload can trigger stress, leading to anxiety, and then I start organizing my workspace. It's a cascade of events that leads to the organizing impulse.

My wife appreciates it when I have the impulse to clean. At least spatial control can be useful in some way. In extreme moment, though, my need to organize can be disruptive and cause even more anxiety.

Friday, May 20, 2011

Another swing for the fences and a miss by the anti-vaccine movement : Respectful Insolence

Two of the many good articles online today are regarding a "study" claiming that legal settlements prove an autism-vaccine link. Of course, having been involved in court cases and settlements in business, I can attest that the law has nothing to do with facts -- and often you settle because that's cheaper than paying lawyers. Settlements are not admissions of anything, though I admit I was tired of lawyers on those occasions when I had to deal them.

Another swing for the fences and a miss by the anti-vaccine movement : Respectful Insolence
Now that the report, written by anti-vaccine stalwarts Mary Holland, Louis Conte, anti-vaccine lawyer Robert Krakow, and Lisa Colin and entitled Unanswered Questions from the Vaccine Injury Compensation Program: A Review of Compensated Cases of Vaccine-Induced Brain Injury, has been published, I sort of wish I hadn't promised to blog about it, because now that I've actually read the damned thing I can't believe it. It's just that bad.
Yes, it is that bad. This "study" is nothing more than self-promotion by the lawyers involved.

From Medscape:

Readers are referred to a chapter in Holland's 2011 book that Wakefield coauthored on scientific studies that "support a possible link between vaccines and autism."

Asked about the reference to Wakefield possibly tainting the PELR article, Holland replied, "The story on Andrew Wakefield is far from over."

In a chapter that she herself wrote in her 2011 book, Holland chronicled the Wakefield affair and concluded that he was unfairly punished "for his temerity to caution the public about vaccine risks and to urge them to use their own judgment." Wakefield, she wrote, has joined an honorable tradition of dissidents like Galileo and Nelson Mandela, and the world will eventually recognize that he stood up "for the practice of medicine and the pursuit of science."

Dr. Offit agreed that both Wakefield and Galileo were both rebels who went against the grain.

"The critical difference," he said, "was that Galileo was right."
Wow, comparing Andrew Wakefield to Nelson Mandela? You have got to be kidding me. That's beyond absurd.

More on Bullying

On Facebook, a reader asked if I have any suggestions to stop bullying. I began to consider my experiences as an educator and university scholar. I'm not sure my experiences point to any solutions, but I can relate what I have learned. (Be sure to follow The Autistic Me on Facebook!)

Evolutionary psychologists will tell you that most species engage in "battle" to establish leadership. I'm not sure how humans can overcome millions of years of "alpha-beta" sorting impulses. However, that doesn't mean that teachers, parents, mentors, and, later in life, good supervisors, cannot intercede and stop competition from crossing the line into bullying.

I was never a good athlete, even though I like some sports. I'm certainly not strong, fast, muscular, tall, or whatever else might translate into a physically dominant appearance. However, I was also rarely the smallest person in a class — average describes me well. Yes, physical presence matters. We know from research that taller people earn more money. Men with deeper voices earn more money and attract more followers, too. Why is that? Because size and depth of voice indicate higher levels of testosterone. Evolutionarily, that's an advantage to the species, at least before the technology age.

One study I've read found that the people with the most "evolutionarily favored" traits are not the most likely to be bullies. This is logical because the biggest, strongest, fastest, et cetera, has nothing to prove — up to a point. As long as the person is "better" but not a "freak" (a magnitude taller, larger, etc.) he or she is dominant. One of the nicest, kindest, most compassionate people I know is a massive body builder who went into medicine. Of course no one ever bothered him! Never being challenged, he was always treated politely and in turn learned to treat others that way.

The "mean girls" and "bullies" tend to be a step or two below the physically ideal people. Again, this is logical considered in psychological terms. When you are close to the top, but not quite there, you want to maintain that social rank. Sadly, the near-top levels of a social group tend to be the nastiest, most competitive levels.

Bullying starts when weakness is perceived. And when are weaknesses revealed? In class and on the playground. Students home in on moments of public weakness. In a classroom, these include stuttering, reading slowly, and other academic indicators students will highlight. Being outside the "norm" (at either extreme) is challenged because children and adults are naturally "tribal" socially. Daily life reveals weaknesses, and there is no way to disguise our differences.

We have to tell teachers that students will compete, but that's not the same as bullying. Who can jump rope longest? Who can throw the farthest? Who can draw the best? When the competition turns to abuse, it has to stop immediately. We need to teach "good sportsmanship" in all fields.

The irony is that even academia, the supposed epitome of intellect and progress, is competitive and cruel. The "publish or perish" competition leads to snarky comments, outright insults, and much worse among professors. "Friendly" competition soon gives way to the very things we claim to be researching ways to improve in education. I've known academic bullies, and they have made my life miserable.

There are intellectual bullies, in this modern age. Yes, there are bullies in the sciences, engineering, and even competitive chess. There are bullies in the workplace, including schools. I'm not sure we can do anything to end bullying — but we might be able to reduce it.

What good is being "number one" if no one likes you? Sportsmanship, lacking a better word, is something we should be teaching and practicing.

Bullying Never Ends

Bullying is nothing new to me. Even as a second grade student I could tell you why I was a target for bullies. But, when I saw the headline "Predictors of Bullying of Autistic Children Identified," I found myself reading the story below on Medscape (http://www.medscape.com/viewarticle/743027). Maybe I was searching for a solution I know doesn't exist. Yes, I am cynical about human nature. (Read my previous post on lying and narcissism as they relate to popularity and power: Social Success and Narcissism)

My simple theory on bullying: people of all ages, young and old, test each other to determine the nature of the "competition" in a social group. We measure people, to locate the strongest and weakest in the group. Bullying is an extreme version of this social testing. Even those of us who want to believe we are exempt from such impulses rarely are. Every group has power rankings, the challenge is to see people beyond those social standings.
Predictors of Bullying of Autistic Children Identified (http://www.medscape.com/viewarticle/743027)
International Meeting for Autism Research (IMFAR) 10th Anniversary Meeting: Poster 105.143. Presented May 12, 2011.
Reported by Norma MacReady
Other investigators have confirmed that children with autism spectrum disorders (ASDs) come in for more than their fair share of bullying, lead study author Elizabeth Kelley, PhD, told Medscape Medical News. In this study, she and her coauthors at Queens University, Kingston, Ontario, Canada, where Dr. Kelley is an assistant professor of developmental psychology, searched for factors that could help predict a child's risk of being bullied.
As I stated earlier, I already have a view of why one is bullied: he or she appears potentially weak to others in the social group. The appearance of weakness might be misleading, but peers attempt to verify the perception.
The participants were 68 boys ranging in age from 11 to 18 years, with a mean age of 14.6 years. Thirty-one of the youngsters had a confirmed diagnosis of an ASD; the remaining 17 were typically developing (TD) adolescents, who served as control subjects.
Tangent: I'm often asked why a study would only include males or females, instead of a mix of the genders. There are two reasons: 1) it removes gender as a variable from the study, providing better statistical control; 2) certain conditions (like autism) have different prevalence rates so we tend to study the larger population in preliminary studies. Choosing males over females in an initial study is reasonable, especially if later studies include both genders. Statistically, this study should be generalizable to similar populations, specifically young males. Replication of this study should be possible, based on the information included in the full text.
Significant differences between the boys with ASD and TD boys were seen in the tests of pragmatic judgment, emotional intelligence, behavioral regulation, and metacognition. On multiple regression analyses, the emotional control domain of the BRIEF and the stress management domain of the emotional intelligence test emerged as significant predictors of being bullied.
In simple English: the boys with ASDs had less ability to control their emotional responses to being bullied. These young men might respond angrily, they might run away from confrontation, or they might simply become flustered under stress. My personal response to stress? Flee the situation and hide until the threat is gone. Seems logical, at least to me, but it also leads to further confrontations.
Why does a flight response lead to more bullying? Because it is perceived as weak.
"Unfortunately, I think this says a lot about adolescent behavior — bullies pick on the kids they think they can get a rise out of, and when those kids react strongly, they just tend to get picked on more," Dr. Kelley said.
I react quickly, almost instantaneously, to stress. If I believe someone presents a threat, I leave the room or shutdown, ignoring the person as best I can. I don't like to be pushed around, but I like responding to confrontation even less.

What was a lousy approach as a child isn't more effective as an adult. As an adult, the only alternative to leaving a situation, especially in the workplace, is capitulation. This surrender leads coworkers to take advantage of my unwillingness to challenge them. You can guess who ends up with extra work or the least-desired assignments. My non-reaction is a reaction, in that it conveys my weakness to others. I'm not sure there is a way to "react" without "over-reacting" to pushy colleagues. Going to a supervisor is a certain sign of weakness, similar to telling the teacher that other students are bullying you.

Tattling is certain to lead to more bullying.
"These findings suggest that it is important for parents, teachers, and other adults who work with adolescents with autism to convey the idea to these kids that the more they react, the more they're going to be bullied," Dr. Kelley said. "I also think that emotional regulation is an understudied area in individuals with autism. We're so focused on the social processes and the language and the repetitive behaviors that we don't always think about the associated difficulties that these kids have, such as anxiety, depression, and problems with emotional regulation. That, too, is something that needs to be addressed in these adolescents."
I don't have any great words of advice. I'm still "pushed around" from time to time. I'm trying to discover the best way to avoid being a "victim" of social rankings, but to date the only solution I have is to work alone as often as possible. Avoiding most social situations seems to be the only solution that works well for me.

Monday, May 16, 2011

Home Alone

My wife is out of town tonight, leaving me alone in the house with the "kids." While I like to be alone at times, I dislike it when I'm not with my wife. I know that we sometimes have to travel for work or family, but I don't like it at all.

Our cats are senior citizens. I have to check their medications, make sure they are doing well, and entertain them. That helps, since I have a routine to follow. My wife prepared a checklist, just in case, for the next two days.

What time alone does is remind me that I don't want to live apart for months at a time. That was something we considered — me taking a job and living in an apartment until things were settled with our current house. That's not a realistic option. I'd have to be flying back and forth or something, which is expensive. Phone calls and webcams are not the same as holding the cats or being near my wife.

I had a donut (apple fritter) for breakfast and a small yogurt for "dinner" tonight. I don't feel like eating tonight. When I travel, I usually eat something and wander to see the sights. For some reason, I'm more anxious with my wife flying and traveling elsewhere.

The kids and I cannot wait for her return tomorrow night.

Wednesday, May 11, 2011

Social Success, Empathy, Sympathy and Autism

I've been swamped for the last week, but that doesn't mean I haven't been pondering "big ideas" while working. One of the topics I can't stop pondering is why so much value is placed on "empathy" and "social skills" when the best of the best at imitating these are often the worst of the worst people.

You don't believe me? There are numerous studies indicating leaders (think Presidents and the list is long) have narcissistic tendencies, as well as a dash of paranoia. Nationally elected politicians also score high on communications measures of social lying. I located more than 100 unique studies indicating that the ability to manipulate people, well-intentioned or not, corresponds to personal popularity. One study of young children tested their ability to lie and correlated "social lying skills" with popularity.

Empathy is "the ability to understand the feelings and desires or needs of others."

When tested, narcissists score high on empathy. So, curiously enough, do some sociopaths. In fact, there are sociopaths able to score near-perfect on some empathy instruments -- which raises red-flags.

Consider what a narcissist or sociopath wants: control and attention. With a great ability to understand and even anticipate what people want to hear, the master manipulator gains trust and the following he or she wants. Charismatic leaders certainly do this by knowing what a person wants to hear and tailoring words, vocal tone, and even movements to the situation. A narcissist can seem like your best friend, instantly, because he or she knows that later you will be useful.

Yet, we keep claiming that the big problem with high-functioning autism, PDD-NOS, and Asperger's Syndrome is the social impairment. In other words, we don't make friends easily. Social impairment is part of the diagnostic criteria.

Sympathy is more important than empathy, at least based on most definitions. And most autistic students and adults I've met have a surplus of sympathy. In fact, many seem to suffer from overwhelming sensitivity and sympathy for the situations of others. Personally, I am extremely sensitive to the suffering of animals and children. Can I empathize? Not always, but I feel horrible when I see anyone or anything suffering.

The social skill that I lack is the ability to communicate that sympathy effectively. At least in some instances.

Some of the research I find interesting:

UMass Researcher Finds Link Between Lying And Popularity.
University Of Massachusetts At Amherst (1999, December 14).
"We found that convincing lying is actually associated with good social skills. It takes social skills to be able to control your words as well as what you say non-verbally," said Feldman.
Why are Narcissists (Initially) so Popular?
Breaking down the popularity of the narcissist
Published on January 22, 2010 by Dr. Scott Barry Kaufman in Beautiful Minds
Paulhus (1998) found that after the first meeting, narcissists were rated as more agreeable, conscientious, open, competence, entertaining, and well adjusted by the other members of the group. What a contrast to what the group members thought of the very same narcissistic individuals on the seventh day!
Narcissism and emergent leadership in military cadets
Sampo V. Paunonen, et al
The Leadership Quarterly
Volume 17, Issue 5, October 2006, Pages 475-486
The best rated leaders exemplified the bright side of narcissism while suppressing the dark side -- emergent leaders were measured to be high in egotism and self-esteem but low in manipulativeness and impression management.
I'm not claiming empathy isn't important. I'm suggesting we should focus on sympathy and helping people learn to communicate sympathy effectively.

Thursday, May 5, 2011

Autism/ASD Forum, May 23, St. Cloud MN

I will be participating in an Autism / Asperger's Syndrome forum for families on Monday, May 23, in St. Cloud Minnesota. The event is at Apollo High School from 6:30 p.m. until 8:00 p.m.

The address is:
Apollo High School
1000 44th Ave N
St Cloud, MN 56303
The roundtable discussion is for parents, young adults, and teens. I believe there will be a short introduction by the autism support specialists for District 742. Arc Midstate, a non-profit dedicated to life-long services for individuals with special needs, will also have someone on hand to answer questions.

For more information:
Arc Midstate Minnesota
This event will likely be the last appearance I have in Minnesota, at least for a few years. I will always appreciate the generosity of the Midstate schools and organizations.

Wednesday, May 4, 2011

Kindle so-so for students, UW study concludes

Brier Dudley's Blog | Kindle so-so for students, UW study concludes | Seattle Times Newspaper

Seven months into the study, more than 60 percent of the students had stopped using their Kindle regularly for academic reading -- and these were computer science students, who are presumably more sympathetic to an electronic book.
I'm not surprised that an eReader doesn't replace books. Taking notes and highlighting are part of the reading process that a Kindle or other eReader doesn't easily replicate.

I recall what a page looks like, from the graphics to the pattern of paragraphs. On an eReader, I can't always locate where a bit of information is. You can't say it is on "Page X" because the pagination changes with font size and other choices a user can change.

Maybe my visual memory would learn to use an eBook? Does anyone else use visual cues the same way?

I also use multi-color "Post-It" notes to mark sections of books. They obviously sell a lot of those little flags, so I'm not alone. 

Lessons from the shaming of chemically castrating doc who “endangers autistic children and exploits their parents”

I have written about Dr. Mark Geier and his son, David, in the past. I refused to recommend a book that referenced the Geiers' "research" because I was so upset anyone would take these men seriously. (See previous posts.) The following article is not surprising to me. It is sad.

Lessons from the shaming of chemically castrating doc who “endangers autistic children and exploits their parents”
By Seth Mnookin
Posted: May 4, 2011

According to this ruling (see original article for PDF download) by the Maryland State Board of Physicians, which was issued last week, Mark Geier has had his license to practice medicine suspended in the state in which he is based. (As far as I can tell, this doesn’t affect Geier’s ability to practice in the other states in which he’s licensed, including California, Florida, Hawaii, Illinois, Indiana, Kentucky, Missouri, New Jersey, Virginia, and Washington.) That this move comes years too late for scores of children does not mean it is not incredibly welcome.
As I stated already… sad.

Legislation Affecting School Accommodations

Yesterday, I received the following e-mail "alert" from the Autism Society of Minnesota (AuSM):
Representative King Banaian (HD 15B-St. Cloud) has introduced HF 1642, which eliminates numerous special education laws and rules that have served our children well in the State of Minnesota. Among those slated for elimination are the Minnesota Pupil Fair Dismissal Act (121A.43), requirements for assistive technology, and rules that create parent advisory councils (or Special Education Advisory Council).
This is a bit misleading (big shock in politics). First, the Minnesota legislative website lists House Files only through 1633 -- there cannot be an official filing HF 1642. I explain this more below. Second, Dr. Banaian voted against the Republican budget (one of two GOP members to do so) because it cut education too much. According to MinnPost.com:
Banaian was one of two Republicans who voted against the Republican cutting plan.
"The higher-ed piece was the worst for me," said Banaian. "It [higher ed] is going to get cut, but I thought this was disproportionate on higher ed. I'm in a district with two [higher ed] institutions. I said to the leaders, 'This is a terrible spot to put me in.' "
The regular legislative session for 2011-12 ends in May. Any bill has to be introduced 31 days before a vote is scheduled. April 29 was the last day to introduce anything. No new legislation, other than the 2012 budget resolution and redistricting plans, are going to be considered. The Minnesota legislature is restricted by the constitution as follows: "...the Legislature may not meet in regular session after the first Monday following the third Saturday in May of any year." There's no time for anything beyond HF 1633. Legally, HF 1642 "doesn't exist" according to the legislative clerk.

No one I've contacted can explain the discrepancy between the AuSM "alert" and the legislative calendar. Maybe someone at AuSM can explain this. It is possible that Dr. Banaian's office drafted a filing that did not meet the deadline, but it would not be assigned a filing number until it was filed with the legislative clerk.

For a good overview of the actual changes to the Minnesota Pupil Fair Dismissal Act (121A.43), I recommend the website of Ratwik, Roszak & Maloney (lawyers specializing in these matters for families of disabled students): http://www.ratwiklaw.com/pub_se_rlcise.php

Specifically, the legislature brought Minnesota law closer to federal mandates.
The legislature revised the PFDA so that it is now consistent with IDEA and provides that the district, relevant members of the IEP team, and the child's parent are responsible for conducting the manifestation determination review. Minn. Stat. § 121A.43(d). Minnesota law no longer contains additional requirements beyond those contained in IDEA as to when a manifestation determination meeting must be held.
Yes, the new laws reduce Minnesota requirements. However, they still exceed IDEA requirements in a number of other areas (other than pupil dismissal) and still supplement IDEA spending beyond what most states do. Based on what I can find online and via the legislative analyst's office, Dr. Banaian has suggested some cuts, but they are far less draconian than cuts proposed by other legislators (of both political parties). Let us at least be fair when we encourage people to protest legislation affecting education.

I'm not thrilled, as an educator and program coordinator at a university. Instinctively, I oppose cuts to education. The problem is, when I review the state budget I don't see many places to cut. The largest expenses in Minnesota and most other states are education and public assistance programs. We already underfund our schools and colleges, resulting in school closures and rising tuitions.

Minnesota has serious problems with infrastructure, too. Our roads are crumbling, bridges collapsing, and even the Metrodome deflated. This is a state in ruins. I also know my property taxes in Minnesota are slightly more than ten times what my parents pay in California. There is a limit to what people can afford. I don't have a good solution. If anything, every practical solution is going to hurt someone. My wife and I are leaving the state, in part because of the cost of living and ever-rising taxes.

I'm wondering if an activist at AuSM was simply trying to pre-emptively argue against cuts before other advocacy groups serving other constituencies did the same. I anticipate this occurring in most states and at the federal level: "Don't cut our program X. Cut program Y, first!" Sadly, groups are going to be pitted against each other more dramatically than at any time in recent memory.

Note: For those outside Minnesota, some important background: Dr. Banaian is an economist. Not just any economist in this state, either. He is professor and chairman of the Economics Department at St. Cloud State University. He is also director of the Center for Economic Education in Midstate Minnesota. I should disclose that I have met Dr. Banaian once and have followed his public statements on the economy for several years. I don't always agree with him, but he definitely knows how lousy the budget situation is.

Tuesday, May 3, 2011

Weighted Blanket WINNER

The Dow Jones Industrial Average closed at 12807.51 today. That means the random number is 51. There are 19 comments to the original post. Time for a little math.

51/19 = 2.68 (2 r 13)
Remembering to add "1" because a zero remainder was a possibility, gives us

Comment 14 by Kabie!

It seems Kabie is in the U.K. -- but hopefully that isn't a problem for shipping.

Congratulations, Kabie!

Contact me at poetcsw @ gmail . com

Quick Observation on Blogging

Me: Why are people so personally rude via e-mail and blog comments? I'm deleting more mail and posts than ever lately. 

Friend: What are your blog topics?

Me: I maintain websites on economic theory, political rhetoric, technology, autism, creative writing, and philosophy. 

Friend: You do realize only creative writing and technology aren't likely to trigger hate mail.

Me: It seems Linux is a religion. 

Friend: Says the person with an Apple sticker on every vehicle. 

Sometimes, it is easy to forget a personal zealotry. I am having a strong reaction to the fact my future employer is an all-Windows campus. Yes, I use Windows sometimes — but I just uninstalled Boot Camp from my Mac and removed the last Windows software. 

Turns out, I am a fanatic, too. 

Monday, May 2, 2011

Autism Rate: The Same in Children and Adults?

The following is an abstract. The full article is available only for paid subscribers, sadly.

Note: The "autism rate" refers only to what we define as autism during evaluations. The "rate" is subjective, due to the nature of autism screening. Still, that's autism research for you.

Epidemiology of Autism Spectrum Disorders in Adults 
in the Community in England
Arch Gen Psychiatry. 2011;68(5):459-465. doi:10.1001/archgenpsychiatry.2011.38

Traolach S. Brugha, MD(NUI), FRCPsych; Sally McManus, MSc; John Bankart, MSc, PhD; Fiona Scott, PhD, CPsychol; Susan Purdon, MSc, PhD; Jane Smith, BSc;Paul Bebbington, PhD, FRCPsych; Rachel Jenkins, MD, FRCPsych; Howard Meltzer, PhD

To our knowledge, there is no published information on the epidemiology of autism spectrum disorders (ASDs) in adults. If the prevalence of autism is increasing, rates in older adults would be expected to be lower than rates among younger adults.

To estimate the prevalence and characteristics of adults with ASD living in the community in England.

Conducting epidemiologic research on ASD in adults is feasible. The prevalence of ASD in this population is similar to that found in children. The lack of an associationwith age is consistent with there having been no increase in prevalence and with its causes being temporally constant. Adults with ASD living in the community are socially disadvantaged and tend to be unrecognized.

A stratified, multiphase random sample was used in the third national survey of psychiatric morbidity in adults in England in 2007. Survey data were weighted to take account of study design and nonresponse so that the results were representative of the household population.

General community (ie, private households) in England.

Adults (people 16 years or older).

Main Outcome Measures  
Autism Diagnostic Observation Schedule, Module 4 in phase 2 validated against the Autism Diagnostic Interview–Revised and Diagnostic Interview for Social and Communication Disorders in phase 3. A 20-item subset of the Autism-Spectrum Quotient self-completion questionnaire wasused in phase 1 to select respondents for phase 2. Respondents also provided information on sociodemographics and their use of mental health services.

Of 7461 adult participants who provided a complete phase 1 interview, 618 completed phase 2 diagnostic assessments. The weighted prevalence of ASD in adults was estimated to be 9.8 per 1000 (95% confidence interval, 3.0-16.5). Prevalence was not related to the respondent's age. Rates were higher in men, those without educational qualifications, and those living in rented social (government-financed) housing. There was no evidence of increased use of services for mental health problems.

Author Affiliations
Department of Health Sciences, University of Leicester, Leicester (Drs Brugha, Bankart, and Meltzer and Ms Smith); National Centre for Social Research, London (Ms McManus and Dr Purdon); Autism Research Centre, Department of Psychiatry, University of Cambridge, Cambridge (Dr Scott); Department of Mental Health Sciences, University College London, London (Dr Bebbington); and Institute of Psychiatry, Kings College London, London (Dr Jenkins), England.

Autism and Higher Education Rights

The following is an outline I use when speaking to faculty, students, and parents about autism spectrum disorders and the legal rights of students within the university. My last post on university access and students with ASDs resulted in a conversation more about diagnoses than services, so I hope this helps clarify the nature of the university experience.

I will expand and edit this post if necessary and as information changes. I would rather update this post than have "outdated" information online in the future.

These are presentation notes, not an essay or academic article. Still, the information should be helpful.

Scope of the Challenge
There are many students entering our colleges and universities with appropriate documentation of autism spectrum disorders. Proper documentation legally qualifies a student to some supports from the school.
  • Post-secondary students with disabilities represent 11 percent of enrollment (GAO, 2009). 
  • High-functioning, college-capable individuals with autism represent 40 percent of ASD diagnoses.
  • From 0.8 to 1.1 percent of U.S. children are estimated to meet the criteria for ASD diagnoses.
  • Could represent 25 percent of legally disabled university students within 20 years. 
Legal Mandates for Access to University Courses
  • Americans with Disabilities Amendments Act (ADA) of 2008; Section 202/Title II: Accessibility of Technologies.
  • Higher Education Opportunity Act of 2008 added new provisions to the Higher Education Act of 1965.
  • Rehabilitation Act of 1973; Sections 504 and 508 extended by courts beyond data access to course access in 2005, 2007.
  • Individuals with Disabilities Education Act (IDEA) of 2004; applies only if any K–12 students have dual-enrollment at the institution.
Compliance with Laws and Regulations
It is essential for parents, students, and our K12 institutions to understand there are limits to what can be expected at a university. Consider the following passage from a legal analysis of higher education and disability accommodations:
While schools are required to provide reasonable accommodations to qualified students and bear the costs, schools are not required to provide accommodations that would fundamentally alter the nature of a program, lower or waive essential academic requirements, or result in undue financial or administrative burdens.
— Milani, 1996, p. 4
Autism is a Legally Recognized Disability
There is no question, according to longstanding federal laws, that autism is a recognized disability. Autism is mentioned specifically in the following education-related laws:
  • The Children’s Health Act of 2000
  • The Individuals with Disabilities Education Act (IDEA) of 2004
  • Combating Autism Act of 2005
  • Higher Education Opportunity Act (HEOA) of 2008
Not all federal education laws and regulations apply to university settings. In some special cases, however, they do. For example, if a university has an arrangement to offer college-level courses to local high school students, those students are still covered by all K12 regulations.

Americans with Disabilities Amendments Act of 2008
ADA was updated in 2008 in ways that might directly affect a student with communication impairments.
  • Updated the ADA of 1990 in an attempt to clarify definitions and mandates.
  • Disability is “a physical or mental impairment which substantially limits one or more of such person’s major life activities.”
ADA 2008 Revisions: Title II, Section 202
Revisions to the ADA expanded accommodations to include any technologies widely used at the institution. For example, many colleges and universities have students register for courses online. Any online system must be accessible for all students.
Title II (Section 202) of the ADA requires universities make their facilities, programs, services, and activities accessible to the disabled. The ADA interprets information technology and related communication as part of the aids and services that must be reasonably accommodated for the needs of disabled students.
— Bradbard and Peters 2010, p. 12
The complication for parents and students is understanding that a university does not have to offer the same level of supports K12 schools typically offer. This is because IDEA and similar legislation applies only to K12 and disabled students, up to age 21, receiving services from K12 schools.
  • States, individual universities, and the courts define “reasonable” on a case-by-case basis.
  • Financial constraints, available personnel, and other factors can be considered by the university in declining services.
  • Court cases have tended to favor colleges and universities under the doctrine of “manner and nature.”
  • A degree must represent equal accomplishment and consistent basic knowledge among all students receiving the diploma.
Association for Disabled Americans, Inc. v. Florida International University (2004)
  • ADA was passed as a “clear and comprehensive national mandate for the elimination of discrimination against individuals with disabilities.”
  • Finding: Based on ADA Title II, public entities are prohibited from discriminating against “qualified” persons with disabilities in the provision of a public service, program, or activity.
Sections 504 and 508 of the Rehabilitation Act of 1973
  • Sections define accommodations clearly and with specific examples.
  • Section 508 includes computer access and design considerations mandated by federal usability regulations.
  • Similar to international Web standards for accessibility.
Even though technology and online courses must be accessible, what constitutes a reasonable accommodation online is still debated. It is not unusual for a college or university to tell a student that he or she must consider an equivalent traditional course if the online does not work well for that individual. Likewise, schools now suggest online courses as an accommodation when traditional settings prove difficult to access.
Section 504 of the Rehabilitation Act of 1973 requires a balance between “the need to give effect to the statutory objectives and the desire to keep section 504 within manageable bounds.”
— USDC Alexander v. Choate (1985)
Laws and regulations normally apply to an employer, not necessarily employees. For example, a waiter cannot be sued for not accommodating a blind diner, but the restaurant could be sued. However, and this is important, the rights of disabled students are protected by regulations that mention instructors specifically. A professor at a university is considered responsible for his or her classroom. This now includes online courses.
Section 508 could be interpreted as applying to individual faculty members who are an integral part of such [publicly funded] universities. Thus, individual faculty members could be held liable (or responsible) for complying with the legal mandates of Web accessibility for the individual Web sites they create and use for instructional purposes.
— Bradbard and Peters 2010, p. 2-3
Family Educational Rights and Privacy Act
FERPA, and some state laws, limit the sharing of information between disability services, instructors, and parents. As a professor, I cannot discuss a student’s disability with another professor without a clear and necessary purpose. I also cannot discuss an adult student with his or her parents. There are all manner of complications with FERPA, including a struggle to determine when it is necessary to violate confidentiality to ensure safety.
  • Federal law limits access to grades, finances, and discipline records.
  • Federal website is up-to-date: http://www.parent.umn.edu/ferpa.html
  • “FERPA requires that access to a college student’s records must be granted by approval of the student.”
  • Disability specialists do not disclose specific conditions.
  • FERPA rights apply to the disabled; no university employee may discuss or disclose the disability to other employees or students.
  • No matter what the law is, a student can give any information to his or her family.
  • There is a “safety of student and/or others” exemption for disclosure.
Legal Implications of the DSM-V Revisions
Some disability services expect a sudden and rapid expansion of the number of students qualified for services when the new Diagnostic and Statistical Manual of the APA is published. The DSM-V is not finalized and its affects are still being debated by mental health professionals.
  • Regulatory agencies, including the Dept. of Education, use the DSM-IV to define disabilities.
  • DSM-V updates “Autism Spectrum Disorders” — potentially expanding the number of individuals diagnosed.
  • Universities must accept DSM-V criteria or risk losing federal funding.
While the DSM-V is not perfect, and many of scholars remain critical of its approach, courts and regulators tend to defer to the DSM as a minimum guide for diagnoses. A college or university can offer greater flexibility, but the DSM is likely to serve as a baseline in any challenge to the accommodations provided — or not provided — by an institution. 

It is best for institutions receiving any federal supports, to err on the side of caution. Take no chances, basically, since the implications of a ruling against a university include the loss of federal funding. IDEA experiences reveal that regulators and courts do refer to the DSM, whatever the current edition might be.

A university might prefer the DSM-IV or another formalized diagnostic criteria for an official diagnosis of autism. This preference is accepted under the ADA, which grants colleges and universities the ability to determine what is an impairment requiring special accommodations. The K-12 public education system is less likely to adhere to the DSM because the vague language of the IDEA controls special education eligibility. However, regulators do consider supports received in the past when deciding if a university is meeting the needs of student. The DSM cannot be ignored; it is best to be flexible and consider the DSM a minimum standard. 
In their review of published case law addressing the eligibility of students with autism for special education, Fogt and her colleagues observed that “adjudicative decision makers almost never use the DSM-IV-TR criteria exclusively or primarily for determining whether the child is eligible as autistic” (p. 211). Although DSM-IV-TR criteria were considered in just over half of the cases reviewed, all but one case acknowledged IDEA as “controlling authority” (p. 211). Thus, when it comes to special education, it is state and federal education codes and regulations (not DSM-IV-TR) that drive eligibility decisions. (Brook, 2006, p. 8)

Asserting Your Rights

Disclosure Requirements
The Department of Education regulators and several court rulings have suggested that a disabled student can only claim discrimination or bias if faculty were made aware of a disability. This means the student must be a self-advocate and establish that he or she qualifies, legally, for accommodations.
  • Faculty can only be expected to recognize “obvious” physical disabilities.
  • Students with “non-obvious” disabilities must disclose to a designated disabilities specialist at a college or university to qualify for the protections available.
  • Failure to disclose forfeits some legal rights and protections at universities.
Eligibility for Services
A student receiving services in the K12 setting is not qualified automatically for similar services at a college or university. Universities are allowed to challenge eligibility and require new evidence of qualification for services.  
A school plan such as an IEP (individualized educational plan) or a 504 plan is insufficient documentation in and of itself but can be included as part of a more comprehensive evaluative report.
— Student Disability Services, University of San Francisco
Universities typically offer no assistance at all when a student needs to re-qualify for services. Why would a university require re-evaluation? Isn’t a school psychologist’s letter sufficient? It turns out, a “school psychologist” is not the same as a “psychologist” in many states.
School psychologists’ training does include study in education and special education, but compared to clinical psychology, there will likely be less emphasis on psychopathology and long-term therapy. Most states will only license private practice at the doctoral level, while most states credential school psychologists at the specialist level (60 graduate semester credit master’s degree).
— National Association of School Psychologists, 2011 (http://www.nasponline.org/)
The testing for eligibility can be expensive and is rarely available via insurance. Many insurance policies that do cover testing and diagnoses of disabilities will not cover a non-essential test that is only for the purposes of college accommodations. If a teen was diagnosed four years ago, the admitting college can still demand newer diagnostic results. Most insurance will not cover this.
A student requesting reasonable accommodations must provide appropriate documentation and then participate in an assessment interview. The guidelines for documentation of physical and learning disabilities will be provided in the interest of ensuring that evaluation reports are appropriate to document eligibility and support requests for reasonable accommodations. Staff from Disabled Student Services are available to consult with students and evaluators regarding these guidelines. 
The University does not provide nor pay for services rendered to meet the above documentation requirements. In order to ensure that services and accommodations are matched to the student's changing needs, students must provide documentation that is no more than three years old. This may require that students undergo reevaluations if their previous evaluation was more than three years ago. Comprehensive testing is not required for a reevaluation. A student need only be retested for his/her previously diagnosed physical or learning disability. The issue of what specific retesting is required is left to the discretion of the student's physician or other qualified evaluator.
— Robert Morris University, PA
This policy is roughly the same at most institutions of higher learning. However, the written policy can be waived. For example, RMU often allows a letter from a physician to substitute for re-evaluation if the original testing is within five years of university admissions. Schools are flexible — never assume they will not work with a student and his or her family.

Self-Advocacy is Legally Mandated
The federal government reminds universities that disclosure is the responsibility of each student. In a 2009 report, the Government Accountability Office issued the following statement:
[It] is the responsibility of post-secondary students to identify themselves as having a disability, provide documentation of their disability, and request accommodations and services.
— GAO, 2009, p. 5
Only as an example, RMU, like most institutions of higher education, reminds students of this legal responsibility in the student handbook and on the RMU Student Services website:
It is the student's responsibility to distribute the accommodation sheets to the appropriate instructors as soon as possible. Failure to distribute accommodation sheets may cause delay in the provision of services. The student must also keep a copy of the accommodation sheet for his/her records and deliver a copy of this form to his/her academic advisor.
— Robert Morris University, PA
Basic Services of a Disability Specialist
If a disabled student has to be a self-advocate, what does a disability specialist do? The DS expert helps students navigate the requirements of the institution — and every college or university is different.
  • Provides letters or e-mail to faculty to document notification, though specific diagnoses are not disclosed.
  • Determines which accommodations are essential and proper to meet student needs.
  • Schedules special testing, study, or research accommodations, including adaptive technology access.
When I first visited Robert Morris University, they constantly asked how they might help me. The small size of the campus means the DS expert knows faculty members personally and can help negotiate accommodations. By comparison, the University of Minnesota, which is huge, struggled to accommodate some students with whom I worked. There are other issues, as well, such as the ability to require faculty to receive training. Faculty contracts often affect what a DS expert can ask of faculty members.

Proactive Planning
Students, their parents, and their high school counselors should be proactive when considering a college or university. Obtain current documentation of any disability:
  • Autism Spectrum Disorder
  • Learning disabilities, often co-morbid with ASDs
  • Physical limitations, such as seizure disorders commonly co-morbid with ASDs.
The more you know about the campus, the better, too. Never assume a campus that claims to be accommodating and proactive actually is. Research the institution as much as you can.

ASD Specialists
I advise students to ask if the disability office on campus has a dedicated ASD expert.
  • The presence of autism spectrum specialists within departments and in disability services is an encouraging sign.
  • Learn where these individuals are, and consider contacting them before you accept admissions to a university.
  • Most experts will meet with you and offer a candid assessment of the campus.
Resolving Conflicts
Unfortunately, too many of the students with ASDs with whom I have worked have needed to deal with conflict resolution and offices of academic integrity.
  • You should know how a university deals with conflicts or “disruption” charges.
  • Student-led CR unlikely to appreciate the nature of autism spectrum disorders.
  • Mediation that circumvents disability service personnel can be problematic.
  • Some systems fail to provide an advocate for students with special needs.

Weighted Blanket Giveaway Plans

Tomorrow, May 3, we will select the winner of a weighted blanket from:

DreamCatcher Weighted Blankets

P O Box 252 * Stevensville * Montana * 59870
Website: www.weightedblanket.net
email: dreamcatcher@weightedblanket.net

We will select the winner using the following method, to ensure fairness:

1) At the close of the markets, we will use the "basis points" of the DOW (the tenth and hundredth decimal values). For example, if the DOW is 12820.44, we will start with "44" as our seed value.

2) If the seed (dividend) is less than the total entrants, we will simply use that number +1 as the winner.

3) If the seed is greater than the number of entrants, we will divide the seed (dividend) by the number of entrants (divisor) and add one to the remainder (because a whole quotient result has no remainder).

Yes, this is seemingly complex, but it is reasonably fair. Everyone can see the DOW and count through the list of entrants. I'll be sure to post the math and the winner tomorrow night.

Be sure you read about these blankets:

Good luck to everyone entered.