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.
Showing posts with label Autism. Show all posts
Showing posts with label Autism. Show all posts

Monday, August 25, 2014

Screening Students for Autism Spectrum Disorder (ASD) - West Palm Beach Autism & Education | Examiner.com

Screening Students for Autism Spectrum Disorder (ASD) - West Palm Beach Autism & Education | Examiner.com



There has been a dramatic worldwide increase in reported cases ofautism over the past decade. The prevalence rates have risen steadily, from one in 150, to one in 110, and now to one in every 68 children. This represents a 78 percent increase in the number of children identified with an autism spectrum disorder (ASD) over the past decade. Likewise, since Congress added autism as a disability category to the Individuals with Disabilities Education Act (IDEA), the number of students receiving special education services in this category has increased over 900 percent nationally. Yet, compared to population estimates, identification rates have not kept pace in our schools. It is not unusual for children with less severe symptoms of ASD to go unidentified until well after entering school. As a result, it is critical that school-based educational support personnel (e.g., special educators, school counselors, speech/language pathologists, social workers, and school psychologists) give greater priority to case finding and screening to ensure that children with ASD are identified and have access to the appropriate intervention services.
Screening and Identification
Until recently, there were few validated screening measures available to assist school professionals in the identification of students with the core ASD-related behaviors. However, our knowledge base is expanding rapidly and we now have reliable and valid tools to screen and evaluate children more efficiently and with greater accuracy. The following tools have demonstrated utility in screening for ASD in educational settings and can be used to determine which children are likely to require further assessment and/or who might benefit from additional support. All measures have sound psychometric properties (e.g., diagnostic validity), are appropriate for school-age children, and time efficient (10 to 20 minutes to complete). Training needs are minimal and require little or no professional instruction to complete. However, interpretation of results requires familiarity with ASD and experience in administering, scoring, and interpreting psychological tests.
The Autism Spectrum Rating Scales (Short Form) (ASRS; Goldstein & Naglieri, 2009) is a norm-referenced tool designed to effectively identify symptoms, behaviors, and associated features of ASD in children and adolescents from 2 to 18 years of age. The ASRS can be completed by teachers and/or parents and has both long and short forms. The Short form was developed for screening purposes and contains 15 items from the full-length form that have been shown to differentiate children diagnosed with ASD from children in the general population. High scores indicate that many behaviors associated with ASD have been observed and follow-up recommended.
The Social Communication Questionnaire (SCQ; Rutter, Bailey, & Lord, 2003), previously known as the Autism Screening Questionnaire (ASQ), is a parent/caregiver dimensional measure of ASD symptomatology appropriate for children of any chronological age older than four years. It is available in two forms, Lifetime and Current, each with 40 questions. Scores on the questionnaire provide a reasonable index of symptom severity in the reciprocal social interaction, communication, and restricted/repetitive behavior domains and indicate the likelihood that a child has an ASD.
The Social Responsiveness Scale, Second Edition (SRS-2; Constantino & Gruber, 2012) is a brief quantitative measure of autistic behaviors in 4 to 18 year old children and youth. This 65-item rating scale was designed to be completed by an adult (teacher and/or parent) who is familiar with the child’s current behavior and developmental history. The SRS items measure the ASD symptoms in the domains of social awareness, social information processing, reciprocal social communication, social anxiety/avoidance, and stereotypic behavior/restricted interests. The scale provides a Total Score that reflects the level of severity across the entire autism spectrum.
A Multi-Tier Screening Strategy
The ASRS, SCQ, and SRS-2 can be used confidently as efficient first-level screening tools for identifying the presence of the more broadly defined and subtle symptoms of higher-functioning ASD in school settings. School-based professionals should consider the following multi-step strategy for identifying at-risk students who are in need of an in-depth assessment.
Tier one. The initial step is case finding. This involves the ability to recognize the risk factors and/or warning signs of ASD. All school professionals should be engaged in case finding and be alert to those students who display atypical social and/or communication behaviors that might be associated with ASD. Parent and/or teacher reports of social impairment combined with communication and behavioral concerns constitute a “red flag” and indicate the need for screening. Students who are identified with risk factors during the case finding phase should be referred for formal screening.
Tier two. Scores on the ASRS, SCQ, and SRS-2 may be used as an indication of the approximate severity of ASD symptomatology for students who present with elevated developmental risk factors and/or warning signs of ASD. Screening results are shared with parents and school-based teams with a focus on intervention planning and ongoing observation. Scores can also be used for progress monitoring and to measure change over time. Students with a positive screen who continue to show minimal progress at this level are then considered for a more comprehensive assessment and intensive interventions as part of Tier 3. However, as with all screening tools, there will be some false negatives (children with ASD who are not identified). Thus, children who screen negative, but who have a high level of risk and/or where parent and/or teacher concerns indicate developmental variations and behaviors consistent with an autism-related disorder should continue to be monitored, regardless of screening results.
Tier three. Students who meet the threshold criteria in step two may then referred for an in-depth assessment. Because the ASRS, SCQ, and SRS-2 are strongly related to well-established and researched gold standard measures and report high levels of sensitivity (ability to correctly identify cases in a population), the results from these screening measures can be used in combination with a comprehensive developmental assessment of social behavior, language and communication, adaptive behavior, motor skills, sensory issues, and cognitive functioning to aid in determining eligibility for special education services and as a guide to intervention planning.
Concluding Comments
Compared with general population estimates, children with mild autistic traits appear to be an underidentified and underserved population in our schools. There are likely a substantial number of children with equivalent profiles to those with a clinical diagnosis of ASD who are not receiving services. Research indicates that outcomes for children on the autism spectrum can be significantly enhanced with the delivery of intensive intervention services (National Research Council, 2001). However, intervention services can only be implemented if students are identified. Screening is the initial step in this process. School professionals should be prepared to recognize the presence of risk factors and/or early warning signs of ASD, engage in case finding, and be familiar with screening tools in order to ensure children with ASD are being identified and provided with the appropriate programs and services.
Lee A. Wilkinson, PhD, CCBT, NCSP is author of the award-winning book, A Best Practice Guide to Assessment and Intervention for Autism and Asperger Syndrome in Schools, published by Jessica Kingsley Publishers. Dr. Wilkinson is also editor of a new Volume in the APA School Psychology Book Series, Autism Spectrum Disorder in Children and Adolescents: Evidence-Based Assessment and Intervention in Schools.
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Sunday, August 3, 2014

Plain Talk About PDD and the Diagnosis of Autism

“Your child doesn’t have PDD. There is no such thing as PDD. Your child may be autistic, or have a condition like autism, or many characteristics of autism, but he doesn’t have PDD because there is no such thing. PDD is a label concocted by psychiatrists to cover up the fact that they don’t know what your child does have.” ~ Bernard Rimland, Ph.D. Autism Research Institute

For sure you want to know if it is or isn’t autism so you can secure appropriate therapies and placement. The diagnosis of autism (which is what is assumed today if a child has a diagnosis of PDD or PDD NOS) will most likely lead to therapies and placement that are appropriate for autism.

There are other diagnosis that may be more appropriate for the child to secure appropriate therapy and placement for the best prognosis. For example, due to apraxia or dyspraxia also being multifaceted communication impairments, most apraxic/dyspraxic children could fall into the PDD or PDD NOS diagnosis depending upon where they are diagnosed. When this happens however instead of a focus on speech and motor planning therapies, along with if needed sensory and strengthening therapies, all of which could be appropriate for an individual with apraxia or dyspraxia, the focus would most likely be more on behavioral therapies such as ABA. However ABA therapy which is typically appropriate for autism, is highly inappropriate and can even be detrimental if used to address the motor planning deficits of an apraxic or dyspraxic child.


For this reason, please don’t accept PDD or PDD NOS unless you are sure it’s autism, and if your child has mild autism, just say it’s mild autism. So I agree 100% with Dr. Rimland. Here’s one of my favorite articles on this by him: Bernard Rimland, Ph.D.


Plain Talk about PDD and the Diagnosis of Autism

Plain Talk about PDD and the Diagnosis of Autism
Written by Bernard Rimland, Ph.D. Autism Research Institute
Autism Research Review International, 1993, Vol. 7, No. 2,

Let’s start with the obvious: the label PDD (Pervasive Developmental Disorder) is a poorly understood, uninformative, confusing, disliked, and should be abandoned. The sooner the better. In fact, it should never have been adopted in the first place.


Over the years I have talked and corresponded with thousands of parents who have told me their child “has PDD.” I often respond by saying something like, “Your child doesn’t have PDD. There is no such thing as PDD. Your child may be autistic, or have a condition like autism, or many characteristics of autism, but he doesn’t have PDD because there is no such thing. PDD is a label concocted by psychiatrists to cover up the fact that they don’t know what your child does have.”


If any parents have been distressed by this blunt, unexpected harangue on my part, I would be surprised. The vast majority seem relieved to at last hearsomeone giving them straight talk about PDD. Parents live with their child 24 hours a day, 7 days a week. These parents realize that their handicapped child will in all likelihood be the central focus of their lives for the rest of their lives. They want to know the truth, insofar as the truth is known. They don’t want to be misled or misinformed by sugar-coated verbiage masquerading as informed fact. If we don’t know the right label for their child, let’s tell them that up front, rather than hide our ignorance behind the mystique of a pseudo-scientific label, presuming knowledge we don’t have, like PDD.


I am very much aware that creating suitable names for “psychiatric” or “behavioral” disorders is a difficult and thankless task. Look at what we have now: Schizophrenia is Greek for “split mind.” Mental retardation is a euphemism for low intelligence. Hyperactivity merely describes what everyone knows too well–the person is too active. Autistic means “day dreaming.”


Until we know what causes these things we are stuck with using a somewhat descriptive term to characterize them. I’ll agree to that, as a matter of necessity, but where does PDD come in?


The passage of time has led to widespread usage of the terms, schizophrenia, mental retardation and autism. There is little or no likelihood that PDD will be afforded similar acceptance.


In the Autism Research Review International (ARRI) (1991, Vol. 5, No. 2), we summarized an excellent statement, signed by 16 prominent European and U.S. professionals in the field of autism, titled “Autism is not necessarily a pervasive developmental disorder.” The authors noted that although the term PDD was introduced well over a decade ago, it has not really caught on, and is unfamiliar not only to lay people, but to the politicians and administrators, most of whom–thanks probably to Rain Man–are aware of autism. The article observes that the term “pervasive” is particularly inappropriate, since severely retarded persons, many of whom have chromosomal defects which affect every cell in their bodies. Autism, they point out, rather than being a pervasive disorder, is in fact a specific one, characterized by deficits in social and cognitive functioning.


Quite apart from the misleading and inappropriate semantics of the term PDD is a practical matter: autistic children and adults unfortunate enough to have the PDD affixed to them have often been–and continue to be–excluded from programs and services designated for those with autism, and which would benefit them.


Clearly, the PDD designation, along with its cumbersome bureaucratic baggage (i.e., PDD-NOS: “Not Otherwise Specified”) should be relegated to the Archives of Failed Attempts, where it will have plenty of company, while we go on about our business.


There are many more children with autistic-like disorders than there are children with autism itself. When I founded the Autism Society of America in 1965, I urged, and my recommendation was followed for many years, that all ASA stationery, brochures, and other printed materials carry the wording “Dedicated to the welfare of all children (later ‘children and adults’) with severe disorders of communication and behavior.” The need for an encompassing title for this group was evident even then.


Of the various labels that have been suggested, the one I like best is “autistic spectrum disorder,” which, I believe, was first suggested by Wing and Gould in 1979. The advantages of this term are obvious. For one, it acknowledges that there is a range of problems and of subtypes, and it does not pretentiously claim to be based on knowledge that is not yet available to us.


At the Autism Research Institute we have been working for over a quarter of a century on the development of more objective scientific means of diagnosing children with autism and related disorders.When my book Infantile Autism was published in 1964, it contained, as an appendix, a checklist designated “Form E-1″ (E for experimental). Within a year E-1 was replaced by the Form E-2. As of June 1993, the Autism Research Institute has collected over 16,800 E-2 forms, completed by parents of autistic and possibly-autistic children in over 50 countries. (Form E-2 is available in eight languages.)Form E-2 is designed for completion by the child’s parents, and asks questions about the child’s early development and about language and behavior through age five an a half. (After age five an a half, autistic children begin to change in many ways, so it is better to rely on behavior prior to that age.) Once we receive a completed E-2 form from a parent or professional, we enter the data into our computer, derive a score which tells the child’s position to the continuum ranging from “classical autistic” at one end to “not autistic” on the other, and mail a report to the sender. We have performed this service, free of charge, for well over a quarter of a century for thousands of parents and professionals world-wide. (Readers of the ARRI are invited to request E-2 forms and avail themselves of this free service.)


A major purpose of this effort is to collect data for statistical analysis. There is no doubt that the “spectrum of autistic disorders” contains numerous subtypes, some of which are large enough to be identified by as our database of almost 17,000 E-2 Forms. We are already aware of some of these types, such as classical–Kanner’s Syndrome–autism, fragile X autism, Rett syndrome, and candida-caused autism. My colleague, Dr. Stephen Edelson and I are conducting factor analyses and cluster analyses of the E-2 database, in order to identify and characterize these and other subtypes. The database is large enough so that subtypes identified by cluster analysis within one segment of the database can be confirmed by cross-validation on E-2 data which was not used in the original identification of subtypes.


As this work advances we will report on progress in the ARRI, and in other places. Subtypes identified through this means of statistical analysis can be validated in a number of ways, independent of the E-2 database, including family history variables, clinical laboratory tests, and differential responses to drugs and other treatments. It is thus hoped to place the diagnosis–as well as the treatment–of “autistic” children and adults on a more scientific basis. I believe that progress in this field will proceed faster if we rely on the identification of subgroups through the analysis of statistical data, rather than on constructs based on speculation, conjecture, surmise and subjective impressions.
In the meantime, let’s get rid of “PDD!”


This article appeared in the Autism Research Review International, Vol. 7 (2), 1993. The Autism Research Review International is a quarterly newsletter published by the Autism Research Institute (4182 Adams Avenue, San Diego, CA 92116, U.S.A.).

Monday, July 21, 2014

Delayed Auditory Processing | The Autism Site Blog

Delayed Auditory Processing | The Autism Site Blog

Feds Clarify Obligations To Kids With Autism - Disability Scoop

Feds Clarify Obligations To Kids With Autism - Disability Scoop



In what advocates are calling a major win, federal officials are for the first time telling states that Medicaid coverage must include treatments like applied behavior analysis for children with autism.
Medicaid programs nationwide must offer “medically necessary diagnostic and treatment services” to kids with autism, the Centers for Medicare and Medicaid Services told states in abulletin this month. That includes everything from speech and occupational therapy to personal care services and medical equipment, the agency said.
The services must be included in what’s known as the Early and Periodic Screening, Diagnosis and Treatment program, or EPSDT, a package of offerings that every state is required to provide children under age 21 who qualify for Medicaid.
The move comes in response to an increasing number of inquiries in recent years from states facing legal action for denying services to Medicaid beneficiaries with autism, Melissa Harris, director of the Division of Benefits and Coverage at CMS, told members of the Interagency Autism Coordinating Committee recently.
Many of the court cases focused on coverage of ABA therapy, though Harris said that CMS was careful not to single out ABA or any other specific treatment in its directive to states.
“The expectation is children with autism are a population that need to have their service needs met under the state EPSDT obligation. ABA is one way to do it,” Harris said.
Medicaid coverage for kids with autism has traditionally varied from state to state. Establishing national requirements will have a huge impact, advocates said.
“This should be of enormous significance to beneficiaries across the country,” said Dan Unumb, executive director of Autism Speaks’ Autism Legal Resource Center. “It will dramatically increase access to critical, medically necessary care.”

Monday, June 30, 2014

Many Parents Of Kids With Autism Have Autistic Traits Too - Disability Scoop

Many Parents Of Kids With Autism Have Autistic Traits Too - Disability Scoop



Parents of children with autism are more likely to exhibit traits of the developmental disorder themselves, new research suggests.
In a study looking at data on moms and dads of 256 children with autism and nearly 1,400 without, researchers found that parents of those on the spectrum tended to score higher on a questionnaire known as the Social Responsiveness Scale.
“When there was a child with autism in the family, both parents more often scored in the top 20 percent of the adult population on a survey we use to measure the presence of autistic traits,” said John Constantino of Washington University who worked on the study published online this month in the journal JAMA Psychiatry.
Constantino was quick to emphasize that a higher score on the assessment is not necessarily a bad thing. More than likely, the traits parents display in small doses may be exaggerated in their children.
“It could be that a mother or a father is just a little bit repetitive or slightly overfocused on details,” he said. “The problem comes when those traits are so intense that they begin to impair a person’s ability to function.”
In cases where both parents had mildly elevated scores on the survey, researchers found that they were 85 percent more likely to have a child with autism. If just one parent scored high, there was a 53 percent increased chance of the developmental disorder occurring in their son or daughter.
Previous research has found that siblings of those with autism often have more autistic traits, but this study is believed to be the first to find as much in parents.

Wednesday, June 11, 2014

Bus Assistant Accused Of Abusing Autistic Student - FOX 29 News Philadelphia | WTXF-TV

Bus Assistant Accused Of Abusing Autistic Student - FOX 29 News Philadelphia | WTXF-TV



PORT RICHEY (FOX 13) -A Pasco County School bus assistant is on paid leave following his arrest for child abuse.
James Robert Lambert, 57, is accused of striking a 10-year-old autistic boy several times on the bus last week.
The boy's mother, Lori Lamb, got a call from a friend the last day of school about her son.
That friend asked if he was okay, and told Lori to check him for bruises and scratches.
Sure enough, Lori said, there were several marks on his arms and the back of his neck.
"I asked Jeffrey what happened and he said 'Mr. Jim hit me,'" Lamb explained.
Pasco County School officials released surveillance video from one of three cameras on board the special needs bus.
"I'm disgusted. I'm sickened. I cannot believe someone that works with children would act that way. It's just inexcusable," Linda Cobb, Pasco school spokesperson, said.
"This is an isolated incident," she added.
Lamb viewed that video for the first time Sunday.
"It was the most disturbing video," she said. "It was frightening. I couldn't believe my eyes. It was disgusting. I mean this man had an open hand and was slapping him around like he was a rag doll."
The video shows what looks like a standard bus ride. There are several loud outbursts, the school district said, from the autistic child.
Cobb said the child was cussing repeatedly.
"If I have to come back there, you're going to get it," a man identified as James Lambert said.
Then the video shows a man walk back to the boy and strike him several times.
Lamb's daughter, Lori Phelan, said her brother tried defending himself.
"You can hear Jeffrey scream, 'Stop don't do that. Don't hit me," Phelan explained.
The boy's mom contacted district transportation about the incident. It pulled the tape and eventually turned it over to law enforcement.
Lambert was arrested Friday.
Lamb said she and other parents have complained to the school district about Lambert before.
"This is the point when we start asking questions," Cobb said.
The school district has no prior disciplinary issues during Lambert's 16-year career as a bus assistant. Lambert has years of experience working with special needs kids, according to Cobb, but she says "If it happened one time, we have to look to see if it's happened before."
There may be some challenges digging into the bus assistant's past.
Cobb explained the surveillance on some busses is recorded on low quality VHS tapes, and those tapes are often recorded over with other footage.
"It there were previous incidents with low quality video, there's a chance that we don't have it anymore," she said.
The boy's mother simply wants Lambert fired and never allowed near kids again.
"It was heart-wrenching because there was nothing I could do because he was by himself on the bus," she said.
Since the incident, Lamb said her son has had nightmares about the incident, and she's thinking about homeschooling him from now on.
The school district has offered to help the family in any way.
Lamb thinks the bus driver should have stopped the bus and should be held responsible as well.
Cobb touched on those remarks and said, "The driver has a responsibility to not only keep an eye on the road, but what's going on behind them in the bus."
Lambert was scheduled to work summer school but that’s since changed.
His employment will likely be discussed at the next school board meeting on June 17th.
Suspension and termination are possible.

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.