Special Education Law and advocating for your child

Please join us for the next meeting of the SPD Parent Connections
Group on Tuesday, August 12th at 7pm at HASC- Woodmere. (321 Woodmere
Blvd.) We are pleased to announce that Robin Kent will be our guest
speaker. Robin will speak about Special Education Law and advocating
for your child.

Robin is an attorney/impartial hearing officer for the Board of
Education for NYC. She hears cases where the parent and school
district are unable to agree upon placement and/or services.
In Nassau she is a parent advocate. She helps parents determine the
services and/or educational placements their children are entitled to.

Robin is the parent of a special needs child. She is currently
running for Family Court Judge in Nassau County. Please don't miss
this special presentation, Robin has so much to teach us.

This meeting is open to the public. There will be a $5 suggested
donation at the door which will benefit the SPD Foundation. All
adults are welcome, but we can not accommodate children.

For more information, email spdwoodmere@hotmail.com

Funds Pitt Researchers To Find Best Treatments For Children With Autism And ADHD Symptoms

Article Date: 26 Jun 2008 - 4:00 PDT

Researchers at the University of Pittsburgh and the Western Psychiatric
Institute and Clinic of UPMC have received $3 million from the National
Institute of Mental Health to conduct a national study of the treatment
of attention deficit hyperactivity disorder (ADHD) in children with
autism spectrum disorders.

"ADHD symptoms are common in children with autism, but children with
autism often do not respond well to stimulant medications, the
conventional treatment for ADHD," said Benjamin Handen, Ph.D., principal
investigator of the study and associate professor of psychiatry and
pediatrics at the University of Pittsburgh School of Medicine.

In this 10-week clinical trial, which will start enrolling patients in
September, Pitt researchers and colleagues from the University of
Rochester and Ohio State University will recruit 144 children ranging in
ages from 5 to13 who have autism with ADHD symptoms. The researchers
will assess the safety and effectiveness of two treatments: atomoxetine
(also know as Strattera), a nonstimulant medication for treating ADHD,
and parent management training in which parents learn how to use
behavioral interventions as another form of conventional ADHD treatment.

At the close of the trial, the researchers will continue to follow for
six months all participants who respond favorably to treatment to
examine the safety, effectiveness and tolerability of long-term
treatment.

"Existing research on medication and behavioral treatments for children
with autism is sparse," noted Dr. Handen. "The findings from this study
will provide guidance for doctors and parents on the best treatment
options for many children with autism who also have symptoms of ADHD."

The University of Pittsburgh School of Medicine is one of the nation's
leading medical schools, renowned for its curriculum that emphasizes
both the science and humanity of medicine and its remarkable growth in
National Institutes of Health (NIH) grant support, which has more than
doubled since 1998. For fiscal year 2006, the University ranked sixth
out of more than 3,000 entities receiving NIH support with respect to
the research grants awarded to its faculty. The majority of these grants
were awarded to the faculty of the medical school. As one of the
university's six Schools of the Health Sciences, the School of Medicine
is the academic partner to the University of Pittsburgh Medical Center.
Their combined mission is to train tomorrow's health care specialists
and biomedical scientists, engage in groundbreaking research that will
advance understanding of the causes and treatments of disease and
participate in the delivery of outstanding patient care.

University of Pittsburgh Medical Center

COMMON MECHANISMS MAY UNDERLIE AUTISM'S SEEMINGLY DIVERSE MUTATIONS

Many of the seemingly disparate mutations recently discovered in autism may share common underlying mechanisms, say researchers supported in part by the National Institute of Mental Health (NIMH), a part of the National Institutes of Health (NIH). The mutations may disrupt specific genes that are vital to the developing brain, and which are turned on and off by experience-triggered neuronal activity.

A research team led by Christopher Walsh, M.D., Ph.D., and Eric Morrow, M.D., Ph.D., of Harvard University, found two large sections missing on chromosomes in people with autism and traced them to likely inherited mutations in such genes regulated by neuronal activity. They report their findings in the July 11, 2008 issue of Science. The study was also supported in part by the NIH's National Center for Research Resources, National Human Genome Research Institute, Eunice Kennedy Shriver National Institute of Child and Human Development, and the National Institute on Neurological Disorders and Stroke.

The study breaks new ground for complex disorders like autism, taking advantage of a shortcut to genetic discovery by sampling families in which parents are cousins. The researchers found genes and mutations associated with autism in 88 families from the Middle East, Turkey and Pakistan in which cousins married and had children with the disorder.

"The emerging picture of the genetics of autism is quite surprising. There appear to be many separate mutations involved, with each family having a different genetic cause," explained NIMH Director Thomas R. Insel, M.D. "The one unifying observation from this new report is that all of the relevant mutations could disrupt the formation of vital neural connections during a critical period when experience is shaping the developing brain."

Earlier studies had suggested that the individually rare mutations are present in at least 10 percent of sporadic cases of autism, which is the most common form.

The researchers used a technique that pinpoints from a relatively small group of families genes responsible for disorders that can be amplified by parenthood among relatives, which can increase transmission of recessive diseases. Evidence had hinted at such transmission in autism, and the large amount of genetic information obtainable from such families reduced the need for a much larger sample including many families with multiple affected members.

The ratio of females to males with autism - normally one female to four males - was less lopsided in such families in which parents share a common recent ancestor, suggesting a doubling of the rate of autism, due to recessive causes on non-sex-linked chromosomes. Also, autism-linked spontaneous deletions and duplications of genetic material were relatively uncommon in these families, suggesting recessive inherited causes.

The researchers found multiple different genetic causes of autism in different individuals with little overlap between the families in which parents shared ancestry. Yet a few large inherited autism-linked deletions, likely mutations, in a minority of families stood out. The largest turned out to be in or near genes regulated, directly or indirectly, by neuronal activity.

"Autism symptoms emerge at an age when the developing brain is refining the connections between neurons in response to a child's experience," explained Walsh. "Whether or not certain important genes turn on is thus dependent on experience-triggered neural activity. Disruption of this refinement process may be a common mechanism of autism-associated mutations."

###

The National Institute of Mental Health (NIMH) mission is to reduce the burden of mental and behavioral disorders through research on mind, brain, and behavior. More information is available at the NIMH website, . NCRR provides laboratory scientists and clinical researchers with the resources and training they need to understand, detect, treat, and prevent a wide range of diseases. Through the CTSA consortium and other collaborations, NCRR supports all aspects of translational and clinical research, connecting researchers with one another and with patients and communities across the nation. For more information, visit .

NHGRI is one of 27 institutes and centers at the NIH, an agency of the Department of Health and Human Services. The NHGRI Division of Extramural Research supports grants for research and for training and career development at sites nationwide. Additional information about NHGRI can be found at its Web site, www.genome.gov.

The NICHD sponsors research on development, before and after birth; maternal, child, and family health; reproductive biology and population issues; and medical rehabilitation. For more information, visit the Institute's Web site at .

NINDS ) is the nation's primary supporter of biomedical research on the brain and nervous system. NICHD sponsors research on development, before and after birth; maternal, child, and family health; reproductive biology and population issues; and medical rehabilitation. For more information on Rett syndrome, visit or

The National Institutes of Health (NIH) -- The Nation's Medical Research Agency -- includes 27 Institutes and Centers and is a component of the U.S. Department of Health and Human Services. It is the primary federal agency for conducting and supporting basic, clinical and translational medical research, and it investigates the causes, treatments, and cures for both common and rare diseases. For more information about NIH and its programs, visit .

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REFERENCE: Morrow EM, Yoo SY, Flavell SW, Kim TK, Lin Y, Hill RS, Mukaddes NM, Balkhy S, Gascon G, Hashmi A, Al-Saad S, Ware J, Joseph B, Parlow JN, Barry B, Yao H, Markianos K, Ferland RJ, Greenberg ME, Walsh CA. Identifying autism loci and genes by tracing recent shared ancestry. Science. 2008 July 11;320 (5886)


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This NIH News Release is available online at:
.

Autistic students get help navigating college life

When Dan Hackett started college, he didn't make the grades he knew he could.
Hackett, who has Asperger's syndrome, found at the Community College of Allegheny County in Pittsburgh that some of his symptoms were holding him back. He had difficulty organizing his time and managing assignments.
''I always knew I could do better,'' said Hackett.
His parents tried to help, but he wasn't comfortable with them intervening at college. He was relieved to discover Achieving in Higher Education with Autism/Developmental Disabilities, a group that helps college students like him.
After contracting with AHEADD, Hackett's grade point average increased from 1.5 to 3.6.
''They kept me on20track,'' says the now 21-year-old political science major. ''They helped me manage my time.''
Many students with Asperger's or other autism-like disorders face new challenges in a college setting. The syndrome hampers communication and social skills, so along with difficulties staying on top of their studies, these students may struggle with making friends and living more independently. They also may be more reluctant to ask for help.
It's a problem colleges and universities are ''very aware'' of as the first big wave of children diagnosed with autism-related disorders moves beyond high school, says Gwendolyn Dungy, executive director of NASPA, a Washington-based organization of student affairs administrators.
''We've been very interested in it and finding out how ready colleges are for these students,'' she said. ''We want to establish a climate for success.''
While higher education institutions usually make accommodations for students with disabilities, the law does not require them to provide the extent of services that students receive in kindergarten through 12th grade.
College students must become their own advocates, a change that can take them and their=2 0families by surprise, said Donna Martinez, executive director of George Washington University's Heath Resource Center, an online clearinghouse for students with disabilities.
''It's night and day'' from high school, she said. ''It's a whole different world.''
Colleges are trying to educate faculty and staff about autism-related disorders and gauge how much services will cost, said Dungy, who organized a seminar on these questions at her association's annual conference in March. Most colleges already provide services to students with disabilities or special needs.
For decades, only children with severe language and social impairments received the autism diagnosis. In the 1990s, the autism umbrella expanded, and autism is now shorthand for a group of milder, related conditions, known as ''autism spectrum disorders.''
One in 166 children is now diagnosed with autism, compared to 1 in 2,500 a decade ago.
There has been a corresponding surge in special educa tion services for autistic children in elementary and high schools.
''More and more of these people who were identified (in the 1990s) could be headed to college,'' said Marjorie Solomon, who studies high-functioning children with autism disorders at the University of California Davis' M.I.N.D. Institute.
One college that has added services for such students is Marshall University, home to the West Virginia Autism Training Center. Through its College Program for Students with Asperger's Syndrome, graduate students help autistic students manage class assignments and develop social and living skills.
The program fields about 10 calls a week from parents of prospective students, said Barbara Becker-Cottrill, director of the training center. ''The parents are saying, 'Wow, my student has the grades and there's a place that will provide the appropriate support for him or her?''' she said.
Students pay $3,200 per semester to enroll in Marshall's program. Advisers may speak with them several times a day, have weekly contact with their professors and help find them social activities. They might give guidance on dorm living or cafeteria food.
''Most classes are 50 minutes long, two to three times a day,'' noted program coordinator Marc Ellison. ''The rest of the time, you're navigating the college community. My advice to students is to realize the least amount of time you spend in college is in the classroom.''
Families looking for the right college for autistic kids should ask whether a school has a counselor who specializes in autism, if professors receive training about it, and what academic accommodations, such as additional time for taking tests, can be made, experts said. Students also should inquire about social opportunities: Does the school have an autism organization for students? Would the university help find a peer mentor?
Peter Breslin of South Salem, N.Y., knew his son, Jason, could handle college academics, but he worried about the rest of the experience. The center at Marshall has made all the difference, Breslin said, even though Jason doesn't always think to contact it himself.
''They have to seek him out,'' said Breslin. ''He thinks he could do it without going to the center. But he really does need them.''
Jason Breslin, 20, a music performance major, says, ''They have all been very helpful and supportive of me. I tried a semester without going to the center and ended up with very low grades because of late assignments or no assignments turned in.''
The Organization for Autism Research, a nationwide group, is creating a line of videos designed to educate college staff. The first is aimed at professors; a second, in the works, will be geared to resident assistants.
AHEADD, the Pittsburgh-based organization, recently opened offices in Dallas, Washington and Albany, N.Y. It charges between $4,200 and $5,700 per semester for help with all aspects of college life.
''We start with academics,'' says founder Carolyn Komich Hare. ''If our students don't do well academically then they're not around to deal with the big issues.''

Calm Down or Else

by BENEDICT CAREY
Published: July 15, 2008

The children return from school confused, scared and sometimes with
bruises on their wrists, arms or face. Many won't talk about what
happened, or simply can't, because they are unable to communicate
easily, if at all. Skip to next paragraph

Brian Stauffer

Related

Health Guide: Autism

| Asperger's Syndrome
iew.html>

"What Tim eventually said," said John Miller, a podiatrist in Allegany,
N.Y., about his son, then 12, "was that he didn't want to go to school
because he thought the school was trying to kill him."

Dr. Miller learned that Tim, who has Asperger's syndrome,
was being unusually confrontational in class, and that more
than once teachers had held him down on the floor to "calm him down,"
according to logs teachers kept to track his behavior; on at least one
occasion, adults held Tim prone for 20 minutes until he stopped
struggling.

The Millers are suing the district, in part for costs of therapy for
their son as a result of the restraints. The district did not dispute
the logs but denied that teachers behaved improperly.

For more than a decade, parents of children with developmental and
psychiatric problems have pushed to gain more access to mainstream
schools and classrooms for their sons and daughters. One unfortunate
result, some experts say, is schools' increasing use of precisely the
sort of practices families hoped to avoid by steering clear of
institutionalized settings: takedowns, isolation rooms, restraining
chairs with straps, and worse.

No one keeps careful track of how often school staff members use such
maneuvers. But last year the public system served 600,000 more special
education students than it did a decade ago, many at least part time in
regular classrooms. Many staff members are not adequately trained to
handle severe behavior problems, researchers say.

In April, a 9-year-old Montreal boy with autism died of suffocation when a
special education teacher wrapped him in a weighted blanket to calm him,
according to the coroner's report. Two Michigan public school students with
autism have died while being held on the ground in so-called prone restraint.

Michigan, Pennsylvania and Tennessee have recently tightened regulations
governing the use of restraints and seclusion in schools. California,
Iowa and New York are among states considering stronger prohibitions,
and reports have appeared on blogs and in newspapers across the country,
from The Orange County Register to The Wall Street Journal.

"Behavior problems in school are way up, and there's good reason to
believe that the use of these procedures is up, too," said Reece L.
Peterson, a professor of special education at the University of Nebraska.
"It's an awful combination, because many parents expect restraints to be used -
as long as it's not their kid."

Federal law leaves it to states and school districts to decide when
physical restraints and seclusion are appropriate, and standards vary
widely. Oversight is virtually nonexistent in most states, despite the
potential for harm and scant evidence of benefit, Dr. Peterson said.
Psychiatric facilities and nursing homes are generally far
more accountable to report on such incidents than schools, experts say.

In dozens of interviews, parents, special education experts and lawyers
who work to protect disabled people said they now regularly heard of
cases of abuse in public schools - up to one or two a week surface on
some parent e-mail lists - much more often than a decade ago. "In all
the years I went to school, I never, ever saw or heard of anything like
the horrific stories about restraint that we see just about every day
now," said Alison Tepper Singer, executive vice president of Autism
Speaks, a charity dedicated to curing the disorder.

The issue is politically sensitive at a time when schools have done a
lot to accommodate students with special needs, and some have questioned
whether mainstreaming has gone too far. "Some parent organizations,
they're so grateful to the schools that their kids have been
mainstreamed that they don't want to risk really pushing for change,"
said Dee Alpert, an advocate in New York who reports on the issue in the
online journal specialeducationmuckraker.com.

For teachers, who have many other responsibilities - not least, to teach
- managing even one child with a disability can add a wild card to the
day. "In a class of 30 to 35 children, there's a huge question of how
much safety or teaching a teacher can provide if he or she is being
called on to calm or contain a student on a regular basis," said Patti
Ralabate, a special education expert at the National Education
Association. "The teacher is responsible for the safety of all the children
in the classroom."

The line between skillful conflict resolution and abuse is slipperier
than many assume. Federal law requires that schools develop a behavioral
plan for every student with a disability, which may include techniques
to defuse the child's frustration: a break from the class, for instance,
or time out to listen to an iPod.

But in a hectic classroom, children with diagnoses like attention
deficit disorder, anxiety or autism can seemingly become defiant, edgy or
aggressive on a dime - and the plan, if one exists, can go straight out the
window, investigations have found. Even defying a teacher's instructions -
"noncompliance" - can invite a takedown or time alone in a locked room, they
found.

In an extensive report published last year, investigators in California
documented cases of abuse from districts in the San Francisco Bay Area,
the suburbs of Los Angeles and in the rural northeastern part of the
state. During the 2005-6 school year, an 8-year-old with a diagnosis of
attention deficit disorder and mild mental retardation was repeatedly locked
in a "seclusion room" alone, adjacent to the classroom - at least 31 times in a
single year. His parents heard about it from another parent, who saw the boy
trying in vain to escape.

In another school, a teacher held a 12-year-old with a diagnosis of
attention deficit disorder "face down on the floor, straddling him at
his hips, and holding his hands behind his back," according to the
investigation, which was done by California's office of protection and
advocacy. Congress established such offices in each state in the 1970s
to protect the rights of the disabled.

Leslie Morrison, director of investigations at the California office,
said parents often complained about such episodes but were usually
reluctant to cooperate with an investigation. "They're afraid the school
will retaliate," she said.

And the children, who have an array of psychiatric diagnoses, from
attention deficit to autism, often do not understand what is happening
or why. "They just think they did something wrong and are being
punished," Ms. Morrison said. "Many of them are not verbal at all and
can't even tell their parents."

In Tim Miller's case, school logs obtained by his father illustrate how
quickly a situation can escalate, regardless of behavior plans. In one
entry, dated March 18, 2005, a teacher wrote: "Tim was screaming down
the hall. He ran past me and began to double his fist to punch the
locker. At this point I scooped my arm underneath his and directed him
into my room."

After the boy continued to struggle, this teacher and another "laid him
onto the mat, where he was held approximately 20 minutes," the log said.

Tim, now 15, graduated from the school last year and in June completed
his first year of high school, excelling in a variety of mainstream
classes without incident. In a telephone interview, he said he no longer
thought much about the takedowns. "I just think now that they were
idiots to do that," he said. "I remember telling my mom to pray to God
that they wouldn't keep doing it, and wishing the other kids would see
what was happening."

When a school has a so-called zero tolerance approach to bad behavior,
it often does makes a public spectacle of controlling a child's
behavior, said several parents interviewed for this article.

Kathy Sexton, who lives near Dallas, had to pick up her 11-year-old son,
Anthony, who has a diagnosis of attention deficit disorder, at the police station,
after school staff members had the boy hauled away in handcuffs for cursing at
a teacher.

"I didn't hear about it for hours and had to go get him at jail," Ms.
Sexton said in a phone interview. "He was hysterical, obviously, and
he's had his ups and downs since then. It's hard to know what a thing
like that does to a child that age."

Several companies offer programs to teach so-called de-escalation
techniques to school staff, and a scattering of schools have developed
model programs to pre-empt confrontations, and defuse them when they
happen. But experts say that until policymakers and schools adopt
standards, on exactly which techniques are allowed and when, children
with behavior problems will in many districts run the risk of being
forcibly brought into line.

Dr. Peterson, the Nebraska professor, illustrates the challenges by
citing two recent cases in Iowa. In one, the parents of an 11-year-old
who died while being held down called for a ban on restraints; in the
other, parents charged that a school failed their son by not restraining
him. The boy ran away and drowned.

"It's damned if you do, damned if you don't," Dr. Peterson said, "and it
reflects the level of confusion there is about this whole issue."