Missouri Advocates For Families Affected by Autism

We are a citizens action group advocating and lobbying for families that have a child with special needs. We believe that EVERY child has a right to a FREE and APPROPRIATE EDUCATION and should NEVER BE LEFT BEHIND.

Saturday, May 31, 2014

My Aspergers Child: The Silent Bullying of Asperger's Boys and Girls

My Aspergers Child: The Silent Bullying of Asperger's Boys and Girls

All of the highlighted things happened to my son in the Lee's Summit School District.  He eventually dropped out because it was affecting him emotionally, psychologically, and physically.  I know, from talking to other parents, that this is continuing today.

My Aspergers Child: The Silent Bullying of Asperger's Boys and Girls

The Silent Bullying of Asperger's Boys and Girls

“My Asperger’s son continues to be bullied at school, but nobody there seems to take it seriously. His teach said that ‘he seems to start the arguments by annoying some of the other students.’ O.K. Fine. Maybe this is true, but that doesn’t justify bullying. How can I get the school to take this seriously?”

Under Section 504 of the Rehabilitation Act of 1973, disability harassment is against the law in all schools, school districts, and colleges and universities that receive public funds. “Special needs” kids who are bullied or harassed have legal rights to grievance procedures and due process on the local level. They can also file complaints with the Office of Civil Rights.

Nevertheless, in spite of all these laws and policies, the National Education Association estimates that every 7 minutes of every school day, a youngster is a victim of bullying, and 85% of the time there is no intervention by other children or grown-ups. Your youngster's school may have anti-bullying policies that do not help much on a practical level.

Kids in special education are the most frequent victims of bullies. Kids with Aspergers (AS) and High-Functioning Autism (HFA) are inevitably victims of bullying. One expert puts the percentage at 100%. The reason is that AS and HFA kids fit the profile of a typical victim (i.e., a "loner" who appears different from other kids). Like hungry wolves that attack a limping sheep that can't keep up with the herd, the boy or girl with clumsy body language and poor social skills appears vulnerable and ripe for bullying. What's worse is the youngster often suffers in silence and does not tell his mother or father about the torment.

Luke Jackson, a thirteen-year-old boy with AS explained it like this: “Aspergers kids don't realize which things they are supposed to go home and tell. ‘What have you done at school today?’ wouldn't automatically bring about the answer, ‘I have been bullied’ unless that subject was specifically brought up.

If your AS or HFA youngster appears under extreme stress, if he is missing school because of headaches and stomachaches, if he has physical injuries and torn clothing, he may be a victim of bullying. If your youngster is stealing money from you, he may be using it to pay off a bully.

Once you determine that your youngster is a victim of bullying, you have to be careful not to make the situation worse. Writing in his book “Freaks, Geeks and Aspergers,” Luke describes what happened after his mom spoke up to his tormentors: “The bullies left me alone for sometime after that. But no amount of threatening by my brother, by the educators, fear of expulsion, pleasant reasoning, absolutely nothing made any difference and they never left me alone. In the end they were physically pushing me around and punching me and it was about the worst time of my entire life.”

Luke endured not only physical beatings, but also name-calling, teasing, tripping so his lunch tray fell all over, having his books destroyed and chairs pulled out from underneath him. He ended up changing schools.

One major problem that Luke's mother and other moms and dads of AS and HFA kids face is that a school may have an anti-bullying policy, yet the staff looks the other way when it happens. Some school administrators are simply more tolerant of bullying than others. Some schools, including Columbine, tolerate a "pecking order" in which athletes and popular children have special privileges and develop a sense of entitlement that leads to a "bullying atmosphere." In such a school, if moms and dads report bullying, the principal may advise them to enroll their youngster in karate or otherwise teach him to stand up for himself. The underlying attitude is that it is the victim's fault. One principal told a mother of an Aspergers boy, "Your son is a little different and it bothers other kids, so he brings this on himself because of who he is." Also in such a school, educators and coaches may bully the “different” youngster too.

Another problem in approaching educators and school administrators is that an AS or HFA youngster does not have the social savvy to tell his side of the story effectively. Bullies typically lack empathy and real feeling, but many are good at crying on cue and playing the victim. Often the Aspergers student gets expelled, and the bully receives no punishment unless the Aspergers student has an effective witness.

In a survey by York University, only 23% of children agreed with this statement: “educators usually - or almost always - intervene when bullies attack.” However, 71% of the educators in the survey agreed. Part of the problem is that educators do not witness most bullying, because it usually happens off campus (which also means the school may not be legally liable for it). AS and HFA kids are most vulnerable when they walk alone to and from school. The other most likely times bullying occurs is during unstructured times (e.g., lunch hour, recess, passing between classes). Bullying peaks in junior high school.

There are things you can do to protect your youngster. It is a good idea to demand an anti-bullying clause in your youngster's Individual Education Plan (IEP). This is a proactive way of having solutions in place and holding the administration to its word in the event your youngster is bullied anytime throughout the year. If your school does not have an anti-bullying program, try to work through the PTO to get one in place. Some schools have a “bullying coordinator” (usually a volunteer) who monitors the lunchroom, restrooms, corridors and playgrounds, and makes sure there is consistent intervention.

If your youngster is a victim of bullying, don't approach the mom or dad of the bully – or the bully himself. According to the research, parents of bullies are often abusive people themselves. Talk to your youngster's teacher and principal in private. Ask for an adult aide to accompany your youngster at all times, if necessary. If the bullying does not stop, you can involve the police or file grievances through your local Office of Civil Rights. If your youngster is in danger, you can home-school him until the situation is under control or transfer him to a private school. If you have to file a lawsuit against the school and the mom and dad of the bully, find a lawyer whose expertise is in special education law.

P.S. Warning to parents: According to statistics, it is very likely that YOUR child with Aspergers or High-Functioning Autism HAS BEEN or IS BEING bullied. Why don’t you know about it? Because your child won’t tell you! Why won't he tell you? Because he thinks it's a normal, everyday activity that some peers engage in. So, you need to investigate this now – BEFORE your child has been tormented for weeks or months or years! If after your investigation, you discover there has been no bullying against your child, then thank God for it.

Bullying and Autism Spectrum Disorder | Autism NOW Center

Bullying and Autism Spectrum Disorder | Autism NOW Center

I believe that Jake suffers from PTSD due to the bullying he faced from adults and peers while he was in school.

What are the consequences of bullying? Some Autistic people develop Post-Traumatic Stress Disorder (PTSD) or similar symptoms as a direct result of bullying during childhood or adolescence. Symptoms of PTSD include frequent flashbacks, increased incidence of panic attacks, high levels of anxiety, inability to discuss the source of the anxiety or cause of the PTSD, and avoidance of people, places, or things that remind an individual of the stressors that caused the PTSD. Social anxiety problems, like avoidance of public places or events, phone calls, or conversation, can be exacerbated, with some Autistic people becoming extremely insecure about attempting to form or maintain relationships with others due to experiences with bullies who posed as friends. Bullying also creates an environment of extreme hostility for the Autistic person. For Autistic students, bullying can result in lowered grades. In the workplace, it can mean decreased or lower work performance. This hostility and intimidation can lead to depression, suicidal thoughts, and less motivation in general.

AUTCOM - Can aversives and restraints produce PTSD in people with autism?

AUTCOM - Can aversives and restraints produce PTSD in people with autism?

Can Aversives and Restraints Produce PTSD in People with Autism?
Published in The Communicator, the newsletter of The Autism National Committee (Summer 1998)

As we learn to listen to people with autism, to their families and to their friends, evidence is growing that, in certain extreme circumstances, behaviors typically explained away as newly-emerged symptoms of the person's autism may in fact indicate something else: Post-Traumatic Stress Disorder, or PTSD.
The general public may have heard of this disorder occurring among Vietnam veterans, Bosnian civilians, or even the young witnesses to the recent spate of schoolyard shootings. In the book Trauma and Recovery (NY: Basic Books, 1992), Judith Lewis Herman, M.D., describes the origins and consequences of PTSD:
"The human response to danger is a complex, integrated system of reactions, encompassing both body and mind. Threat initially arouses the sympathetic nervous system, causing the person in danger to feel an adrenalin rush and go into a state of alert. Threat also concentrates a person's attention on the immediate situation. In addition, threat may alter ordinary perceptions: people in danger are often able to disregard hunger, fatigue, or pain. Finally, threat evokes intense feelings of fear and anger. These changes in arousal, attention, perception, and emotion are normal, adaptive reactions. They mobilize the threatened person for strenuous action, either in battle or in flight.
Traumatic reactions occur when action is of no avail. When neither resistance nor escape is possible, the human system of self-defense becomes overwhelmed and disorganized. Each component of the ordinary response to danger, having lost its utility, tends to persist in an altered and exaggerated state long after the actual danger is over.
Traumatic events produce profound and lasting changes in physiological arousal, emotion, cognition, and memory. More-over, traumatic events may sever these normally integrated functions from one another. The trauma-tized person may experience intense emotion but without clear memory of the event, or may remember everything in detail but without emotion. She may find herself in a constant state of irritability without knowing why. Traumatic symptoms have a tendency to become disconnected from their source and to take on a life of their own." (p. 43)
Among the symptoms of PTSD described by Dr. Herman are alterations in affect regulation, which may be manifested as self-injury or explosive anger; alterations in consciousness, including the unwanted reliving of experiences, either in a sudden, intrusive manner or as a preoccupation or thought that won't go away; and alterations in a person's sense of self or of relations with others, resulting in manifestations of helplessness, paralysis of initiative, isolation, or withdrawal. (p. 121)
As Dr. Herb Lovett observed, "People who have been hurt in the name of therapy may not understand their plight any differently than survivors of cult abuse or sexual abuse. A common feature of post-traumatic stress syndrome is the flashback in which a person acts as if a memory is present reality.... every time they recall their previous maltreatment, unless their panic and rage are recognized as a function of stress, they are likely to be further stigmatized as `impossible to serve.'" (p. 208, Learning to Listen, 1996).
Those who are without speech, whose ability to produce the needed words "on demand" is unreliable, or whose words are discounted, not only may be more vulnerable to what we perceive as "typical" criminal acts, but also to experiences of intense frustration, helplessness, and entrapment in "no-win" situations. An unreliable sensorimotor system -- a body that does not always do what you want it to do -- in combination with "treatments," services, and living facilities which not only fail to help the person accomplish what they need to do, but make their quality of life contingent on their successful accomplishment of what someone else wishes them to do, may, however unintentionally, establish a situation of intense threat from which neither victory nor escape are perceived possible. Those families and people with autism who have reported to the Autism National Committee on trauma-type symptoms often connect them to experiences of this type of "entrapment."
Despite fairly abundant anecdotal evidence, knowledge of the nature, prevalence, and treatment of psychological trauma in the lives of people with severe disabilities is lacking. Herman's book suggests a possible reason. In outlining the historical roots of PTSD research, she observes that "Periods of active investigation have alternated with periods of oblivion." (p. 7). Three forms of trauma have come to light over the past century, and "Each time, the investigation of that trauma has flourished in affiliation with a political movement." (p. 9).
The first to come to public awareness was "hysteria," which the late nineteenth century was briefly inclined to consider as a possible manifestation of the isolated, politically powerless lives led by most Western women (an interpretation later dismissed in favor of Freudian reductionism). The second form of trauma to be studied was "shell shock" or combat neurosis, which became an issue in England and the United States after the First World War and reached a peak after the Vietnam War. Here the political context was the growth of an antiwar movement and a re-thinking of the effects of armed combat in the modern world. The last and most recent type of trauma to achieve widespread public awareness was sexual and domestic violence, spotlighted by the feminist movement as well as modern political advocacy to secure the human rights and protection of children. Many people with disabilities and their advocates would like to add to Herman's list a fourth category, but its recognition may well be dependent on their success in bringing political awareness of issues such as aversive "treatments" and institutional living conditions.
The personal and public recognition of trauma which occurs at the hands of another human being is difficult to achieve, Herman notes: "When traumatic events are natural disasters or `acts of God,' those who bear witness sympathize readily with the victim. But when the traumatic events are of human design, those who bear witness are caught in the conflict between victim and perpetrator. It is morally impossible to remain neutral in this conflict. The bystander is forced to take sides.
It is very tempting to take the side of the perpetrator. All the perpetrator asks is that the bystander do nothing. He appeals to the universal desire to see, hear, and speak no evil. The victim, on the contrary, asks the bystander to share the burden of pain. The victim demands action, engagement, and remembering. ...
In order to escape accountability for his crimes, the perpetrator does everything in his power to promote forgetting. Secrecy and silence are the perpetrator's first line of defense. If secrecy fails, the perpetrator attacks the credibility of his victim. If he cannot silence her absolutely, he tries to make certain that no one listens. To this end, he marshals an impressive array of arguments, from the most blatant denial to the most sophisticated and elegant rational-ization....The perpetrator's argu-ments prove irresistible when the bystander faces them in isolation. Without a supportive social environment, the bystander usually succumbs to the temptation to look the other way...." (pp. 7-8)
How much more operative might this principle be when the victim can be characterized as a person with a severe disability and problem behaviors who must experience aversive "treatments" as a "medical necessity," and when the perpetrator seems both pleasant and reasonable? As Herman observes, those who expect a purveyor of abuse to radiate warning signals will find themselves confused: "Since he does not perceive that anything is wrong with him, he does not seek help -- unless he is in trouble with the law. His most consistent feature, in both the testimony of victims and the observations of psychologists, is his apparent normality....Authoritarian, secretive, sometimes grandiose, and even paranoid, the perpetrator is nevertheless exquisitely sensitive to the realities of power and to social norms. Only rarely does he get into difficulties with the law; rather, he seeks out situations where his tyrannical behavior will be tolerated, condoned, or admired. His demeanor provides an excellent camouflage, for few people believe that extraordinary crimes can be committed by men of such conventional appearance." (p. 75).
Nor do perpetrators of abuse have to resort to violence in order to cause trauma: "Although violence is a universal method of terror, the perpetrator may use violence infrequently, as a last resort....Fear is also increased by inconsistent and unpredictable outbursts of vio-lence and by capricious enforce-ment of petty rules." (p. 77)
Dr. Herman finds other key elements in the development of PTSD to be "isolation, secrecy, and betrayal (which) destroy the relationships that would afford protection." (p. 100). In the absence of relationships with caring, affirming people, the foundation of personal develop-ment is undermined.
The only way back from severe psychological trauma is through re-establishing connectedness with others: "Traumatic events destroy the sustaining bonds between individual and community. Those who have survived learn that their sense of self, of worth, of humanity, depends upon a feeling of connection to others. The solidarity of a group provides the strongest protection against terror and despair, and the strongest antidote to traumatic experience. Trauma isolates; the group recreates a sense of belonging. Trauma shames and stigmatizes; the group bears witness and affirms." (p. 214).
It may be significant that the reestablishment of trust and connectedness to others is also the factor credited with improving the lives of people with autism who believe, or whose families believe, that certain of their symptoms originated in psychological trauma. Clearly we have much to learn as this issue begins to receive the attention it deserves.

Wednesday, May 28, 2014

Strategies for Surviving Middle School with an Included Child with Autism by Ann Palmer — TEACCH

Strategies for Surviving Middle School with an Included Child with Autism by Ann Palmer — TEACCH

Strategies for Surviving Middle School with an Included Child with Autism by Ann Palmer

I began worrying about my son's future transition to middle school about the time he first started full inclusion in the third grade. Elementary school was hard enough. How was he going to survive complicated schedules, more difficult academics, and the social pressures so problematic in middle school? Eric did survive, and so did I as his parent. It was by far our hardest years in school, but they were much easier than I imagined they would be. His success through middle school can be attributed to many things, but I am most appreciative to his guidance counselor and teachers for supporting him in so many ways and for allowing me to be a contributing partner in school decisions. Every child with autism is unique, with different strengths and needs, and though these strategies worked for my son, they may not for others.
1.    Prepare as early as possible. Start thinking about the organizational and academic issues BEFORE transition to middle school, preferably in 4th or 5th grade. Talk to the guidance counselor at the middle school or to parents of middle school students to find out what skills a student will need when entering middle school. Use this information to prepare IEP goals to work on in the 4th or 5th grade. Invite someone from the middle school to attend the IEP meeting if possible. When having the IEP meeting for the transition to middle school, have the meeting at the middle school, not the elementary school, and make sure a regular education teacher is present. Take your child to tour the school the week before school starts and walk him through his schedule, preferably not at an open house with lots of people, but on an individual tour.
2.    Organization issues are often one of the hardest parts of middle school for our kids. Ask the school if your child can have one notebook for all classes rather than a different notebook for each one. This notebook can have subject dividers with pockets between each class section. ( I found them at Office Depot.) One pocket can be designated for things to come home: assignments, notes to parents, etc., and one pocket for things to go to school: homework, notes to teachers, etc. A notebook with a clear cover was also very helpful because a copy of the schedule can be placed in it so that it is visible from the outside of the notebook and can be referred to as needed.
3.    Individualize the schedule. Eric's middle school had a very complicated schedule and no consecutive days had the same time schedule for classes. There would be "block" days where certain classes were extended and certain classes were omitted. To help with this, I made a simple, easy to read schedule that included each day of the week and placed this schedule on the outside of his notebook. You can even color code each class, for example, green for science, blue for English, etc. I even individualized the schedule by including when to go to the locker and when to go to the bathroom. This involves researching when classes are located nearer each other and therefore would allow a stop at the locker or bathroom. Sometimes you can find a teacher willing to allow a student to go to the restroom or locker during class which helps avoid the crowds.
4.    Lockers can be adapted to the needs of your child. There was a requirement at our middle school for each student to have a spin dial lock, bought from the school. This kind of lock was too difficult for my son to use and we got them to approve his use of a lock where the combination numbers are rolled in place to open the lock. Of course, you have to give the school office the combination for the lock. The location of the locker can also be important. Try to have the locker located outside of a supportive teacher's classroom. We found that most of the teachers stand at the door of their classrooms or in the halls between classes and would be able to keep an eye out for problems. Get an outside locker so that there won't be students on both sides of your child's locker crowding him or making access to the locker more difficult. Organize the locker if needed. You can buy locker organizers that compartmentalize the locker so things can be found easier. Try the Hold Your Own store for these. Post a locker schedule inside of the door to the locker that the student can refer to. This would include what should be put in the locker at each visit and what to remove from the locker. Between classes at the lockers is a very loud, hurried time and this helps the student who may have trouble with these distractions.
5.    Getting homework assignments home with the correct books and notebooks can be a difficult task. To help solve this problem, we asked for an extra set of textbooks for home. You can have this included in the modifications part of the IEP. Or for the student who has trouble with bringing the right books to class, the school textbook can be kept in the classroom in a safe place designated by the teacher and accessible to the student. Highlighted textbooks were also an option at our middle school. They really help students to know what is important in a chapter when studying for a test. Parents can offer to highlight the textbooks if they aren't already done by the school. At our middle school, the PTA highlighted a certain number of textbooks that were primarily used by LD students but would be very appropriate for some of our kids as well. This too can be put in the IEP.
6.    Many of the modifications available to students with learning disabilities can be accessible to autistic students. At our middle school, the LD students were all located on a particular hall with typical kids as well as Academically Gifted students. An extra LD Resource teacher was assigned to this hall and would "float" between classes as needed. This hall was a good placement for Eric because of the extra teacher and because all the teachers were prepared to make modifications for these students. Check to see if your school has a similar situation.
7.    Social difficulties can be a problem in middle school. Eric is very passive and withdrawn socially, like some children with autism. On the other hand, many of you may have autistic children who may be very social and want and need social acceptance by their peers. My concerns for Eric were more around his getting "lost in the shuffle" so to speak, and luckily he has never been bothered by not having friends or not being popular. I think he frequently was oblivious to what the other students thought of him or said about him. There were a few students who took an interest in him, or were helpful to him in elementary school. The middle school counselor had the idea to place these students in some of Eric's classes when possible. Teachers can also suggest possible peer buddies with students who have shown they want to be helpful to your child.
8.    One of the hardest social situations for my son in middle school was the Physical Education classes. He hated sports and had motor delays that made sports difficult for him and therefore made him more of a target for other students. The locker room situation was especially difficult and there was little adult supervision there to protect him. After a couple of incidences, we were able to arrange that he wouldn't go into the locker room at all, and instead would wear appropriate clothes on P.E. days and would leave his backpack in the P.E. teacher's office. We had him exempted from the 8th grade P.E. requirement. I wrote a letter to the principal and included a letter from a developmental pediatrician who knew my son and was very knowledgeable about autism. We had no problem getting him exempted. I would only suggest this option if your child gets nothing positive from P.E. or suffers anxiety related to it. High School gives you many more options for Physical Education classes that can be used to satisfy the requirements for graduation, such as weight lifting, track, and other more individualized sports. You can also request Adaptive PE help in an IEP.
9.    Communication is so important in middle school and unfortunately you will probably find it harder to communicate with your child's teachers on the middle school and high school levels than in elementary school. Educating seven teachers instead of one about your child and autism is much harder for parents. These teachers may have over a hundred different students each day and finding the time for daily communications home is impossible. I would have a meeting with as many of my son's teachers as possible before the school year began, often bringing my son in for them to meet. I also met with them as much as possible during the year to find out how things were going. The teachers on each hall function as a team and meet regularly and you may be able to attend some of these meetings. The guidance counselors should be able to help you arrange this. If you have at least one teacher on the team who is especially interested in helping your child, that teacher will probably be willing to keep up a good communication line between the other teachers and report to you about any concerns that may come up. We also found that teachers appreciate having a resource in the school available to them who is knowledgeable about autism, maybe an autism class teacher or another special education teacher, someone they know they can contact if your child has a "meltdown" or if they just have questions about autism.
10.  Communication from your child about school is also very important. My son was never one to initiate telling me things that happened at school. I more or less interrogated him when he arrived home, not one of his favorite activities, but one I felt was necessary. If I didn't ask the right questions, I often wouldn't find out about important things that happened. After years of these question sessions, Eric has learned what kind of information I need to know and will now (most of the time) tell me things about school. I continue to remind teachers each year that Eric does not report back to me well and that I need for them to let me know about things and not rely on him to relay messages home.
 Good luck to all of you who read this and are planning future transitions to middle school for your children. Remember, most typical middle school students have times when they may struggle with staying organized, with making friends, and with dealing with the academic pressure. This is a hard time for all adolescents. The staff at your middle school is prepared for these events and should have strategies to help. Your role as a parent, I believe, is to develop a good working relationship with your child's school and teachers so that all of you, together, can combine your knowledge and experiences to make the middle school years as successful as possible.
Ann Palmer

Tuesday, May 27, 2014

Autism Is Not About You | The Daily Banter

Autism Is Not About You | The Daily Banter

People with autism get a relentlessly raw deal in the media, and even from the largest organization supposedly devoted to helping them, so it was refreshing to finally see a popular, influential figure help tell a story about autism that kept the focus where it belonged. In his beautiful interview with Ron Suskind, The Daily Show host Jon Stewart pointed out what should be obvious, but which gets very little play in the “awareness” community: having autism is mainly hard on the people who have autism.
Suskind, the Pulitzer-winning political author whom you may remember as the guy whom the Obama administration wasn’t all that happy with a few years back, appeared on The Daily Show to promote his new book, “Life, Animated: A Story of Sidekicks, Heroes, and Autism,” which focuses on Suskind’s son, Owen. There are two remarkable things about this interview, the first being that Stewart and Suskind actually make Owen’s experience with autism the focal point of the discussion, rather than Owen’s effect on the people around him. The other is the clip that Stewart plays at the conclusion of the interview, of the graceful adaptation Owen has made to connect with his father (you can watch the extended interviewhere):
Through my writing about autism and the media, I’ve cyber-met many parents of children with autism who have their priorities straight, but it’s been my experience that they are the minority. In real life, I’ve never met an autism parent who didn’t want to bitch about how hard it is on their own lives, or trade pats on the back over our mutual suffering. I’m sorry, but if you have a child with autism, and your first thought every day isn’t how hard it is to have autism in a neuro-typical world, then you are failing at life.
That’s nothing, though, compared to the treatment of autism in the media. Aside from the toxic anti-vaccination crowd, which has made autism its favored Macguffin, the mainstream media has engaged in a relentless campaign of slander against people with autism. When it was revealed that the Sandy Hook Elementary School mass murderer had an Autism Spectrum Disorder (ASD) (along with unidentified mental health issues), every single news outlet reported, without a shred of scientific basis, that the autism either may have been, orwas, responsible for that crime.
Even before that, though, there were efforts to connect autism with mass murderers who weren’t even on the spectrum. Leading that effort was MSNBC’s Joe Scarborough, who tried to pin the Aurora movie theater shooting on autism, and said that “more often than not,” mass shooters are “somewhere on the autism spectrum.” At that time, the total number of mass shooters who had ever had a confirmed diagnosis of an ASD was precisely zero. Scarborough offered a non-apology that was exposed for the hollow excuse that it was when he fairly gloated at the news of the Newtown shooter’s diagnosis, and made the assertion again.
What makes Scarborough’s slander that much more sickening, though, is the fact that he is the parent of an autistic child himself, which not only deepens the betrayal but which gives his audience the false impression that he’s some kind of expert on autism.
Then, there’s Autism Speaks, the most prominent autism charity, which gave Scarborough cover for his slander. They make a hell of a magnet, but in case their continued embrace of Scarborough wasn’t telling enough, here’s what they think of people with autism:

Perhaps most sickening, though, is the surprisingly common narrative that says parents of autistic kids sometimes have no choice but to murder them. That was the gist of a report, byCBS News’ erstwhile investigative reporter Sharyl Attkisson, explaining and excusing the murder of 14 year-old Alex Spourdalakis by his mother and his godmother. It’s probably the most evil piece of mainstream journalism I’ve ever seen. That’s saying a lot, even within the narrow subset of Sharyl Attkisson’s autism reporting.
I have two children with ASDs, but I don’t think it makes me an expert on autism. My oldest is about to get his master’s degree from the Stevens Institute of Technology, an accomplishment for which I take zero credit. My layman’s understanding of autism is that it’s like being dropped off in a country where you don’t speak the language, and no one understands your language, except that obstacle applies to every one of your five senses. Succeeding in a world like that, one which refuses to meet you anywhere near halfway, is a remarkable achievement tht I can’t begin to get my head around.
My youngest, Liam, is going to be nine this year, and I saw a lot of him in Suskind’s story. He and Stewart joked that it was a lucky thing that Owen’s affinity wasn’t for Tarantino movies, but one of Liam’s (many) affinities is for the film Road House. Fans of that film will immediately understand why there’s an index card stapled to my kitchen wall which reads “For a good Buick call.”
He’s also fond of vacuum cleaners (especially Dysons), school buses (there are “emergency exits” all over my house, John Carpenter’s The Thing, and, for a time, Kill Bill, but he watches Road House every night as he goes to sleep. It’s a challenge to figure out what all of these things mean, and Suskind’s insights are incredibly valuable in this regard, but it is nothing compared to the challenge that Liam faces in getting his dumbass dad to understandhim. Hearing someone in the media actually trying to see the world from the point of view of a person with autism, which should be the norm, was like a bolt of lightning.
Autism is not about you, Jenny McCarthy, Joe Scarborough, Autism Speaks, autism parents, and shitty reporters. It’s not about how hard your lives are, or what saints you are for not murdering them, or what bogus science you’re spreading. It is about the children with autism, and the adults that they become. If you love someone with autism, if you care at all about them, you need to fix yourselves. A good place to start would be to listen to them.

Friday, May 23, 2014

‘The Reason I Jump,’ by Naoki Higashida - NYTimes.com

‘The Reason I Jump,’ by Naoki Higashida - NYTimes.com

Autism is an endless mystery, largely unknowable by its nature, yet there are dozens of books by or about autistic people determined to explain the lives of those affected. The newest is “The Reason I Jump,” popular in Japan since it was published in 2007. The author, Naoki Higashida, was 13 years old at the time he wrote the memoir, and nonverbal. He wrote by spelling out words on a Japanese alphabet letter board.


The Inner Voice of a Thirteen-Year-Old Boy With Autism
By Naoki Higashida
Translated by KA Yoshida and David Mitchell
Illustrated. 135 pp. Random House. $22.
The slim volume consists of short chapters beginning with questions like “Why do you speak in that peculiar way?” and “Why do you like spinning?” Describing why, exactly, he likes to jump, Higashida tells us: “The motion makes me want to change into a bird and fly off to some faraway place. But constrained by ourselves and by the people around us, all we can do is tweet-tweet, flap our wings and hop around in a cage.”
Higashida is bright and thoughtful. He maintains a blog and has written other books. His American publisher describes Higashida, who can also type on a computer and is able to read aloud what he has written, as a “motivational speaker.” As the parent of an autistic adult, I know autism has hidden depths, but they are hidden under real impairment. The author tells us that he gets lost and panics. He can’t remember rules, sit still or make sense of time.
The book comes to English readers through the passionate efforts of David Mitchell, the author of “Cloud Atlas” and the father of an autistic child. Mitchell and his wife, KA Yoshida, provided the translation. Mitchell believes the book is proof that the standard definition of autism is wrong, that autism’s obvious restrictions of socialization and communication “are not symptoms of autism but consequences.” Higashida, he has also said, is “more of a writer than I am.”
I will leave that consideration to others, but by its own context, “The Reason I Jump” makes for odd reading — a book about disordered sensorineural processing by a person with disordered sensorineural processing, written one letter at a time in adolescent Japanese prose and then translated into colloquial English (“It really gets me down”). The author barely mentions other people — there are brief references to his mother and his teacher — but he uses the plural (“our,” “we”) on almost every page. The constant presumption that he speaks for “people with autism” and “us kids with autism” is jarring.
The English edition is being treated more as a fragile objet de consciousness than as a book, as though criticism or analysis would be vulgar. Unfortunately, it’s impossible to sort out what is Higashida here and what is Mitchell. The two have never met in person, and Higashida had almost no involvement in the English edition. Mitchell has said that Yoshida “did the heavy lifting” from the Japanese, and that he “provided the stylistic icing on the cake.”
“The Reason I Jump” may raise questions, as many books have, about the nature of autism. But it raises questions about translation as well — that “icing.” Translation, at its best, is a dance between an objective search for equivalent language and an intuitive grasp of the author’s intent, which may have nothing to do with the translator’s point of view. The parents of an autistic child may not be the best translators for a book by an autistic child.
Mitchell writes that reading “The Reason I Jump,” he “felt as if, for the first time, our own son was talking to us about what was happening inside his head.” No parent of an autistic person — and I include myself here — can help longing for such a chance, and looking for it wherever we can. We have to be careful about turning what we find into what we want.

Thursday, May 22, 2014

Miller Park Center


The Director of the Miller Park Center is a substitute teacher.  Those are her only credentials

Report Date: May 22, 2014
Name: JULIAN, REBECCA L     Educator ID: 506625

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invisible strings - Stories from the Autism Spectrum.

invisible strings - Stories from the Autism Spectrum.

Wednesday, May 21, 2014

2 arrested for abuse at VA autism center - NBC12.com - Richmond, VA News

2 arrested for abuse at VA autism center - NBC12.com - Richmond, VA News


A teacher and teaching assistant at a Virginia autism center are accused of abusing a child with special needs and trying to cover it up.
The York-Poquoson Sheriff's Office arrested Diane "Renee" Smith and Darcie Badami, who both work at the New Horizons Center for Autism and Yorktown. The school is part of Yorktown Middle School.
A staff member at the school heard a child screaming in a classroom on Friday and went to see what was going on. She told deputies she saw a teaching assistant chasing a 13-year-old student with special needs around the room. The woman said she saw the teaching assistant catch the child, then begin sticking the boy several times in the arm with a push pin. The teaching assistant then lifted his shirt and used a cleaning wipe on the wounds, causing even more pain, according to the Sheriffs Office.
The witness said she heard the teaching assistant and a teacher conspire to cover up the abuse by saying the push pin marks were bug bites. The witness went to the school administration who reported it to Child Protective Services.
Deputies began investigating on Monday and have found at least four potential victims of physical abuse, according to WAVY.com.
Smith, 45, faces assault and battery and contributing to the delinquency of a minor charges. Badami, 35, was also charged with contributing to the delinquency of a minor. Badami is listed as a teacher on the school's website
An official at the school says the two suspects are now on leave and that the center was cooperating with authorities.
"The New Horizons Center for Autism responded in a timely and decisive manner to the reported information. We continue to work in full cooperation with The York-Poquoson Sheriff's Office and Child Protective Services in this investigation," said Joseph Johnson with New Horizons Regional Education Centers. "Student safety and treatment is a school priority that we take very seriously. We consider this a very serious matter and will take all appropriate disciplinary and corrective actions."
Sheriffs are still investigating to see if there are any other victims. They ask anyone with information on this crime to call the Crime Line at 1-888-LOCK-U-UP.

Saturday, May 10, 2014

People with milder forms of autism struggle as adults — SFARI.org - Simons Foundation Autism Research Initiative

People with milder forms of autism struggle as adults — SFARI.org - Simons Foundation Autism Research Initiative

Contrary to popular assumption, people diagnosed with so-called mild forms of autism don’t fare any better in life than those with severe forms of the disorder. That’s the conclusion of a new study that suggests that even individuals with normal intelligence and language abilities struggle to fit into society because of their social and communication problems.
In fact, people diagnosed with pervasive developmental disorder-not otherwise specified (PDD-NOS) are no more likely to marry or have a job than those with more disabling forms of autism, according to a Norwegian study published online in June in the Journal of Autism and Developmental Disorders1.
Early intervention has the potential to alter this trajectory, say experts. But until today’s children with autism reach maturity, it will be hard to say how much behavioral intervention at a young age can alter the course of their lives.
“The implication of our findings is that the consequences of having an autism spectrum disorder with profound difficulties in communication skills and social impairment can’t be compensated for by either high intellectual level or normal language function,” says lead investigator Anne Myhre, associate professor of mental health and addiction at the University of Oslo in Norway.
These findings provide support for the proposed merging of pervasive developmental disorder into the autism spectrum in the DSM-5, the edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM) set to be published in 2013, the researchers say.
The new edition of the manual takes a spectrum approach, absorbing the separate categories of childhood disintegrative disorder, Asperger syndrome and PDD-NOS into the broad category of autism spectrum disorder. The draft guidelines note that symptoms must appear in early childhood and affect everyday functioning.
“I’m glad that the authors see this as support for the DSM-5 proposed definitions,” says Sally Rogers, professor of psychiatry and behavioral sciences at the University of California, Davis’ MIND Institute. Rogers is a member of the neurodevelopmental working group revising the diagnostic criteria for autism.

Single and disabled:

Myhre’s team investigated marital status, mortality and criminal records, and disability pension awards for 113 individuals who would meet contemporary criteria for autism. Of that number, 39 fall into the PDD-NOS category. More than half the participants — including 23 of the 39 with PDD-NOS — have an intelligence quotient (IQ) of 70 or less.
All were treated in the children’s unit at the National Centre for Child and Adolescent Psychiatry in Oslo, Norway, between 1968 and 1988. The researchers tracked these participants using government-issued identification numbers.
They found that by age 22, 96 percent of the group had been awarded a disability pension from the government. Nearly all were unmarried — 99 percent of those with autistic disorder, compared with 92 percent of those with PDD-NOS. The crime rate for the group as a whole was little more than half that of the general population, although more individuals with PDD-NOS than autism had been convicted of a crime.
The study’s comparatively bleak findings are a surprise, say experts.
“The PDD-NOS group is generally better functioning, at least in childhood, so we would expect them to do better as adults,” says Sigmund Eldevik, associate professor of behavioral science at the Oslo and Akershus University College of Applied Sciences, who was not involved with the study.
In July, Eldevik reported that young children with autism who receive behavioral interventions in preschool have higher IQs and adaptive behavior scores than those who do not receive the intervention2.
However, the individuals in Myhre’s study grew up during a time when autism was typically diagnosed later in childhood, and there were few early intervention programs.
For example, autism was not classified as separate from schizophrenia until the release of the third edition of the DSM in 1980. And Asperger syndrome and PDD-NOS were not included until the DSM-IV’s release in 1994.
To address the diagnostic changes, the researchers used detailed descriptions of symptoms, psychological test results, school performance and other records to retroactively diagnose autism or PDD-NOS in the study participants according to DSM-IV criteria.
Eldevik says the changes in DSM subcategories would probably not affect the study’s findings, however, as clinicians in Norway generally use the International Classification of Diseases (ICD).
“The PDD-NOS diagnosis from DSM-IV is very similar to the ‘Atypical Autism’ diagnosis from ICD-10, which we are using in Norway,” he says.
What’s more, other studies of individuals with PDD-NOS have turned up similar results. A 2009 European study reported that few individuals with PDD-NOS, autism or Asperger syndrome live independently3. That study found that antisocial personality disorder and substance abuse are more common in the PDD-NOS group, together with the mood and anxiety disorders shared by all the subgroups. Although all 122 people in the study have normal IQs, only 40 percent were employed at the time of the study, and 84 percent had never been in a long-term relationship.

Limited opportunities:

Relatively few long-term studies report on individuals with PDD-NOS but, in general, research on social and employment prospects for people on the autism spectrum are not encouraging.
For example, a study published earlier this year found that in the U.S., young adults on the spectrum who do not have an intellectual disability are in some ways worse off than those who do, as there are fewer programs to support their needs. They are at least three times more likely to have no structured daytime activities, for example4. Another study by some of the same researchers showed that 70 adults with Down syndrome enjoy higher levels of independence, more social opportunities and receive more services compared with 70 adults who have autism5.
This picture of limited opportunity for social engagement and growing isolation in adulthood for those on the spectrum is replicated by a study in April, which showed that more than half of young adults with autism had not gotten together with friends in the previous year6. Another study in February found that close to 40 percent of young adults with autism in the U.S.receive no services whatsoever after high school graduation.
In Norway, people on the spectrum are eligible for a government disability pension at age 18. Although only 5 percent of the Norwegian population as a whole receives this pension, 89 percent of individuals with autism in the new study receive it, as do 72 percent of the PDD-NOS group. 
The higher level of intellectual disability in the autism group may explain the lower levels of disability awards in the PDD-NOS group, says Rogers. “This suggests that interventions that increase intellectual abilities will lead to better outcomes,” she says. Although most studies suggest that those with higher IQs don’t necessarily fare better in life, those individuals did not benefit from the kind of targeted early interventions now available, which address both intellectual and social functioning, she says.
High-quality early intervention is the only treatment that has shown improvement in intellectual functioning in people with the disorder, Rogers says. As more individuals with the disorder are diagnosed and receive treatment early on, future generations may face better outcomes.
Early intervention is already leading to markedly better intellectual functioning in children with autism, says Amy Wetherby, professor of communication science and disorders at Florida State University.
“The whole landscape of autism is changing because we are better at identifying the cognitively higher-functioning individuals,” she says. “With good early intervention, most end up within normal limits [on intelligence tests].”

Thursday, May 8, 2014

Leawood boy heading to L.A. to watch “Judge Judy” taping - KansasCity.com

Leawood boy heading to L.A. to watch “Judge Judy” taping - KansasCity.com

We wish we could be there on Tuesday when 10-year-old Elijah Nessel of Leawood walks into Judge Judy’s courtroom to watch the show.
We really wish we could be there when they go to lunch together later, on her dime.
Elijah owes his dad, Jeff Nessel, extra hugs for this treat.
He and Elijah have watched Judy Sheindlin’s show – daytime TV’s No. 1 show with more than 10 million daily viewers – for a couple of years now.
“He just fell in love with her voice, the New York accent, throwing people out of the courtroom, the whole nine yards of it,” says Jeff, a financial adviser.
Soon Elijah, who goes to Leawood Elementary, was talking like Judge Judy.
“The education in this country is going into the toilet,” he likes to say in a New Yawk accent.
He even quotes Judge Judy at school. Hearing someone say “Umm” to the teacher, Elijah has been known to note: “Umm is not an answer.”
So when Jeff saw that the show was having a Facebook contest for fans, he entered for Elijah. (“Sarah isn’t the only writer,” laughs Jeff, whose wife is a former Kansas City Star columnist.)
Jeff’s essay began: “When my son Elijah was born 10 years ago, I like any father, thought about bonding with him while watching the Super Bowl or playing 18 holes on a sunny afternoon.
“When he was diagnosed as being on the autism spectrum, those hopes, as petty as they now seem, were forever dashed.
“However, a new bonding vehicle was created, watching Judge Judy together. With the help of a DVR, we watch together as Judge Judy dispenses justice, with Elijah commenting, ‘I don't like plaintiff! Will Judge Judy send the defendant out?’ and rewinding to watch again when the Judge opines ...
“I just love the fact that he can laugh and have so much happiness while watching the show. And I had to laugh when my wife brought home the wrong kind of milk and my son said, ‘Mom, you made a mistake! You got the wrong milk for me! I am plaintiff and you are defendant!’”
Jeff entered the contest and forgot about it until one day in March when he received a congratulatory email.
Thousands of people sent in videos and photos and essays, says show spokesman Gary Rosen. But Judge Judy was particularly struck by Jeff’s words. “It was quite a moving essay,” says Rosen.
Jeff didn’t tell Elijah that he’d won an all-expenses-paid trip to Los Angeles to see Judge Judy, and it’s a good thing. A show rep called back with bad news: Contest winners had to be at least 16.
Since Jeff had entered on Elijah’s behalf, they would have to forfeit.
Jeff accepted the news graciously, but asked if the show could send Elijah an autographed photo of Judge Judy to hang on his bedroom wall next to his “Monsters, Inc.” pictures.
The next day the rep called back. “The judge wants to meet Elijah,” he said.
Consulting with their lawyers, producers decided to declare Jeff the winner and allow him to take Sarah to the show taping as his personal guest.
And Elijah? He will be Judge Judy’s personal guest in the courtroom on Tuesday.
“It told me a lot about her and what kind of a person she is,” says Jeff. “I think that was really, really great.”
When Jeff finally told Elijah the good news, he just wanted to know one thing: “Is she going to pick us up at the airport?”

Read more here: http://www.kansascity.com/2014/05/05/5004220/leawood-boy-heading-to-la-to-watch.html#storylink=cpy

Expelled students need alternative education - St. Louis American: Guest Columnists

Expelled students need alternative education - St. Louis American: Guest Columnists

For students who have been expelled from school, an alternative education is critical to getting them back on track and moving forward to a brighter future.
Statistically, expelled or suspended students often end up on the wrong track, derailed and facing a bleak future filled with uncertainty, false starts, frustration and possibly a life of crime or drugs.
A case in point: a 13-year-old student was expelled by the Hazelwood School District.
At home for six months with no educational options and an unemployed mother who could not afford a private alternative education for him, the seventh grader was in serious jeopardy until Legal Services of Eastern Missouri (LSEM) and its Children’s Legal Alliance program stepped in.
Alleging that the Hazelwood School District’s refusal to provide an alternative education violated the student’s right to a free public education (as guaranteed by the Missouri Constitution and citing the district’s statutory obligation under 167.164 RSMo), LSEM filed a lawsuit against Hazelwood.
LSEM further alleged that the refusal to provide an alternative education violated the student’s right to equal protection under the Missouri Constitution. Currently, the state provides an alternative education to children who become involved in the juvenile court system and to children who are certified as adults and incarcerated in Missouri prisons.
Yet the student, who had not been charged with any crime, was not receiving any alternative education. Named as co-defendants in the lawsuit were the State of Missouri, the Missouri Department of Elementary and Secondary Education, and the Missouri State Board of Education.
The lawsuit was subsequently settled. In addition to changing it policy, the district agreed to pay for the student to attend an off-campus alternative education program called ACE. At ACE, the teen-ager is flourishing academically while his mother, who was previously unemployed partly because of her son’s expulsion, is back to work.  
While the case was successful, it remains to be seen whether the settlement will put the spotlight back on a recurring problem: the failure of Missouri school districts to provide expelled students or those under long-term suspensions any alternative education.
Contending they have no legal obligations to provide alternative options, many school district leaders and officials refuse it even though districts would receive the same amount of funds from the state as it does for a traditional classroom education.
This denial of education is unfortunate.
Underlying research clearly demonstrates that offering alternative education to suspended or expelled pupils benefits them and society as a whole. Without an alternative, bad outcomes can occur.
Without day care or other arrangement options, the parent is often forced to quit his or her job to stay at home with the child. If left alone or not adequately supervised, the child could become susceptible to gang or other delinquent or criminal activity. And the child will not graduate from high school, all but eliminating post-secondary opportunities.
The positives of providing alternative education include a chance to return to high school and graduate while reducing delinquency and school failure. It’s also more cost-effective to society to educate these teens or children rather than kicking them to the curb, where welfare and prison costs are steep and crime and drugs reside.
Recently, the U.S. Departments of Justice and Education published guidance in response to reports that children of color and children with disabilities are disproportionately suspended or expelled from school. That guidance concluded that children be removed from school only as a last resort, and if removed, they should be given an alternative education and returned to the regular education classroom as soon as possible.
It’s too early to tell whether other school districts will take note of LSEM’s lawsuit and, like Hazelwood, change its policy of refusing alternative education to all expelled students.

Now is the time for all Missouri education leaders and stakeholders to reconsider this outdated and ineffective approach that ultimately harms students and society long after the final bell has rung.