Advocates for low-income, minority students and students with special needs, including the Rhode Island Disability Law Center and The Autism Project of Rhode Island scored a major victory in Providence
last week when Education Commissioner Deborah Gist announced she would scrap
a plan for a three-tiered high school diploma system tied to standardized test scores.
The plan called for students with high scores to receive an “Honors’’ diploma, those with average scores to earn a “Regents’’ diploma, and ones who score “partially proficient’’ to be granted a
basic Rhode Island diploma. Children who fail the test would have the opportunity to take it again. If they fail a second time, but other requirements are achieved, they could
still graduate with a certificate.
Opponents claimed the proposal created a state-sanctioned caste system that would stigmatize struggling students and haunt them when seeking future employment or college admission. Based on recent test scores, they countered that almost all students who
were poor, minorities, had disabilities, or were learning English would get the lowest tier diploma, if they
even got one at all.
Currently, a student is required only to take the standardized test to qualify for a diploma, receiving
one regardless of their score.
Prior to abandoning the proposal, Commissioner Gist took to the opinion pages of state newspapers to expound upon the virtues of the tiered system for honoring excellence. But hundreds of students, teachers and leaders turned out at public hearings in January to
fiercely oppose their opposition.
When at the end of the meeting, Gist acquiesced to public will, the executive director of The Autism Project thanked her
for acknowledging that "just as we don’t all learn the same, we don’t all test the same.”
Commissioner Gist stated that children with special needs, limited English skills or
who had recent traumatic events in their lives such as a house fire or the death of a parent
should be given modifications and accommodations on future standardized tests and the results of those tests would not be tied to diplomas.
While it’s important to have high standards for students in our school systems,
the correct decision was made in scrapping this program. There are plenty of
other ways students can be acknowledged for their achievements, including SAT
and ACT scores, president’s lists and grade point averages. This proposal was superfluous
and unnecessary and would have lead to further stigmatization, which is
something children with autism and other special needs already have to contend
with on a regular basis.
Recently, on
a Q&A portion of its website, the Mayo Clinic weighed in on the gluten
free, casein free (GFCF) diet for autism. Dr. Jay Hoecker, emeritus consultant
for the Department of Pediatric and Adolescent Medicine,
stated that there was "no evidence that special diets are an effective
autism treatment" and that "restrictive diets can lead to nutritional deficiencies."
Thanks in large part to a lack of autism awareness, there are many alternative treatments
and therapies (including the GFCF diet) that desperate parents seek out and end
up being more harmful than helpful.
Any home-brewed diet based on a lack of evidence, should not be used haphazardly. A professional nutritionist or doctor should be overseeing any type of diet being used on a child on a
regular basis. Without these measures, a child’s health can be severely
affected. Not many caregivers have access to the knowledge and diagnostic tools
such as blood work, urine samples, blood pressure, vitals or are nutritionally savvy
enough to keep a child’s well being properly monitored.
I too, tried the gluten-fee, casein-free diet for my son and ironically enough,
his healing began when I ended the diet and put him back on milks, yogurts, Happy Meals, Pediasure and Ensure.
We’re spinning our wheels and are more interested in fads rather than facts. I have never read a single
report stating that ABA (Applied Behavior Analysis), floor time, complete dedication,
or any other behavioral modification therapy was harmful. These are the things
we should be focused on.
Temple Grandin’s mother did not use the GFCF diet. Neither did the majority of parents of the greatest known adults
with autism who are now fully functional in our society.
One can search any number of alleged "fixes" and find someone touting
results. My son is my result. The parents I study with and blog with are real
and the diet did not work for them either. The positive results in GFCF studies could have
very well been brought on by other underlying factors.
Granted, there are instances when a gluten-free casein-free diet is warranted if
a child with autism has been diagnosed with allergies related to certain foods. However,
this is often the exception and not the rule.
The GFCF diet is expensive and often forces already strapped families to spend their last
dime,
leaving them discouraged and distraught when the results don’t come.
I, like many other parents, am witnessing first-hand the behavioral modification
approach and a complete turnaround in my son’s life. It is remarkable, miraculous and above all, it
does not cost us anything other than our time.
Early detection and intervention of autism is the best approach to help our
children. Let’s stay focused and base decisions on
recommendations from organizations like the Mayo Clinic instead of jumping on
bandwagons and treatments that have yet to be proven by research.
Winter has been particularly harsh this year and in some areas, weather conditions
have made the flu season difficult to contend with as Influenza cases are
continuing to spread rapidly. The University of Wyoming reports widespread cases
throughout the state and the school’s Student Health Services has been treating
several patients per day with flu-like symptoms. The state of Indiana has just
been listed in the "wide-spread" outbreak category, and according
to the CDC, this scenario is playing out in many states around the country.
Influenza (the flu) is a contagious respiratory illness caused by a virus. Symptoms include fever, headache, extreme tiredness, dry cough, sore throat, runny or stuffy nose and muscle aches.
It can lead to severe illness and complications, particularly among older people,
children and those with compromised immune systems.
Practical ways to prevent the spread of the flu include thorough hand washing (for more than 20 seconds using a rubbing, friction
action) and of course, covering one’s mouth when coughing with the inside of an elbow and not
with the hands.
In addition to hygiene, another preventative measure for the flu is an annual
vaccine, as recommended by the CDC for those 6 months or older.
Although mercury in vaccines has been proven to not cause autism, there
are suggestions that heavy metals can certainly trigger or further complicate
conditions in an already pre-disposed child.
Thimerosal (a mercury-based preservative) has allegedly been removed from all vaccines,
with the exception of some brands of the flu shot and some plain tetanus and
diphtheria-tetanus shots. For
the 2010-2011 season, Agriflu, Fluarix, and Flumist are brands that do
not contain mercury, while Afluria, FluLaval, Fluvirin, and the multi-dose version of Fluzone all contain
at least some traces of mercury.
Parents should be both educated and prepared when questioning their doctors about
the injections given to their children with autism spectrum disorders. With the
flu season now in high gear, consult with them about Fluzone and demand single doses for your child’s
age and weight versus the cheaper method of drawing from the larger, multi-dose
vial. If Fluzone is not an option, be sure to demand one of the three brands
listed above that do not contain Thimerosal, assuming it is age-appropriate.
Heavy metals have been known to play a role in the neurological functions and seizures associated with
autism spectrum disorders. And although autism is a pre-disposed condition, you certainly don’t want to add to the barrage of interruptions already present in the brain.
Be informed, get tough, stand your ground and continue advocating on your
child’s behalf and your autism journey will turn into a very rewarding
experience, even during the dreary flu season.
Residents of the United States will be facing the peak of flu season (which
runs from October through May) in the coming few weeks and it’s likely that a
portion of children who get sick will require hospitalization during that time.
Every child is anxious when they have to stay in the hospital, but for
a child on the autism spectrum, these stressors can expand exponentially. Like
other services in our society, most hospitals are behind-the-curve in dealing
with patients who have autism. This lack of preparedness in the
medical setting can cause many problems and untold grief for children and
families.
Fortunately, some hospitals are facing the problem head-on. The
Hospitalist reports of a handful of medical facilities around the country
that have autism consultants who are called in to help with arriving patients,
providing an array of ideas for both parents and staff. While this is a good
start, much more work is needed in this area.
When a child with autism arrives at the hospital, doctors and nurses need to
make the child’s life as consistent as possible. Limiting the number of
physicians and nurses interacting with them is extremely important. With the
proliferation of teaching hospitals, this can often be difficult. ¨Grand Rounds¨
when doctors and their legions of interns crowd into the patient’s room is
unduly stressful and should be avoided.
Regardless of a child’s age, a family member in the room twenty-four hours a day
is highly recommended. I discovered the hard way that many children’s
hospitals have twenty-four hour babysitting services, but don’t make it widely
known to patients or their families. If you don’t have a family member who can
stay with your child around the clock, ask the hospital to provide a companion
when you can’t be there.
Dimming lights, keeping noise levels low, touching children infrequently and
letting them know what will be happening next are other ways to limit sensory
overload. Doctors should turn off cell phones and pagers and be sure to have
enough time to attend to the child.
Involving a child in activities such as wearing the same hat as a surgeon,
having them touch and handle a wrist bracelet before putting it on, or being
shown medical equipment before it is used can all help counteract the onslaught
of foreign experiences.
From personal experience, I highly recommend that every time a youngster has to
contend with a shot or blood work, insist that Emla cream be applied first.
Rubbed on the injection site thirty minutes or more in advance, Emla completely
numbs the area so that the needle won’t even be felt.
Scary procedures usually done under local anesthesia can be performed under
general anesthesia instead. When my son had to have an endoscopy, having him
sleep through it spared him both the terror and stress.
If a staff member is speaking in a way that is inadvertently upsetting your
child, take them aside and politely coach them.
Also, don’t presume a medication is appropriate just because the doctor says so.
Do your own research. A heartbreaking
scenario unfolded in Seattle when a boy with autism was getting a tooth
extracted in the dental clinic and died from a patch placed on his arm for pain.
He couldn’t tolerate swallowing pills, but the patch carried a black box warning
that it was only to be used for cancer patients with a high tolerance for
opiates. Although the parents were awarded a multi-million dollar lawsuit
settlement, it was no consolation for their grief and loss.
Statistically, your child will eventually find his or her way into the emergency
room at some point in the future. In fact, according
to the CDC, approximately 200,000 Americans require hospitalization each
year from the flu virus alone, with a good portion of those patients being
children and the elderly. These numbers don’t even take into account the
myriad of other reasons a child on the autism spectrum may require inpatient
care.
Having a loved one in the hospital can be overwhelming, and at times,
terrifying. Don’t wait until it’s too late and don’t assume a hospital
will be equipped to handle your child. Make plans now and have a hospital
plan in place so you’ll be fully prepared when that time comes.
Each year, American Idol produces a handful of contestants who give memorable
performances during the audition rounds, immediately making them odds-on
favorites to win. Last night, millions of American Idol viewers were introduced
to just such a contestant in James Durbin. Durbin is a 21-year-old Santa Cruz,
California resident and unemployed father who has faced some major challenges
over his lifetime.
At the age of nine, Durbin’s father died of a drug overdose and the Idol singer
has also been
diagnosed with Tourette syndrome and Asperger’s, a high-functioning form of
autism.
James Durbin wowed the judges with an amazing vocal range, which included
renditions of "You Shook Me" and "Dream On." Judge Steven
Tyler was particularly impressed, saying, “Wow man, that was so, so good."
Comparisons are already being made to Season 8 American Idol runner-up,
Adam Lambert. However, Durbin is actually much different and his unique story, coupled with an amazing voice, will surely make him a fan
favorite and front-runner to win it all. If that were to happen, Durbin would
join a growing list of individuals (i.e. Jason McElwain, Temple
Grandin, etc.) who have shattered many of the stereotypes and misconceptions
about what it means to have autism and what those who have it are capable of
accomplishing.
After his performance, James Durbin admitted to the judges that when he
sings, his Tourette’s "all goes away." Hopefully, Durbin doesn’t
anytime soon and is eventually crowned the Season 10 winner.
Last year, autism rights activist Ari Ne’eman was appointed to the National Council on Disability as the first openly autistic presidential appointee in American
history. Ne´eman points out that both the law and an overwhelming body of empirical evidence support the notion that children with autism benefit most from an inclusionary model of
education:
"Research has repeatedly found that inclusion of autistic students in the general educational setting leads to significant gains in academic achievement and standardized test scores, adaptive behavior, communication, social relationships and interaction, and post-high school outcomes for those students.
In comparison, autistic students who are educated primarily in segregated or life-skills settings score lower on assessments, make less progress in reading and math, have fewer social interactions and positive peer relationships, communicate less, and have lower adult outcomes and more issues with generalizing skills and adaptive behaviors."
The law also dictates that when appropriate programs for children on the autism spectrum are not available, it’s incumbent upon that school district to adjust their programs rather than
to send those children away to autism schools. In other words, the program must
conform to the child rather than the child conforming to the
program.
Given the fact that many schools are not up-to-par in regards to their autism inclusion programs,
one wonders if this notion of building expensive and separate schools isn’t a cost-cutting move disguised as a gift horse.
What lends more credence to this notion is a 2009 Supreme Court ruling decision
(6-3), stated that parents can place their kids in private schools unilaterally and then ask public schools to pay. Parents used to be required to try out a program for their child
first before seeking an out-of-school placement, but that is no longer the
case.
Mr. Ne´eman prefers that money designated to build segregated schools should be used to offset cuts in special education and that a ¨race-to-the-top¨ should be ignited to see which schools can come up with the best inclusion programs that could serve as
examples for other
districts.
Controversies such as these invariably bring out some irate parents of neurotypical children who claim their children are suffering from having
children with autism in their midst.
Like nails on chalkboard, these voices of fear and disdain only prove the necessity of neurotypical and autism spectrum children growing in appreciation of one another through day-to-day
interaction instead of opting for the segregation option that has been
all-too-common in the past.
A group from Washington
University in St. Louis reports that upon finishing high school, many children with autism spectrum disorders (ASDs) are left without
the proper supportive or health services that they previous had access to. According to the
report, nearly 40 percent of youths with ASDs from among the more than 400 surveyed participants enrolled in special
education failed to receive any speech therapy, case management, mental health services or other health services after they
turned 18.
There’s been little research as to what happens to adolescents with autism once they reach young adulthood. Because of their challenges with communication and social
interaction, as well as their greater reliance on others for aid and high rates of co-morbid medical problems, youths are
particularly vulnerable during this time.
This period is known as “Transition."
Transition is the process that takes young people with special needs from childhood to
adulthood, usually occurs between the ages of 14 and 22 and must promote
movement from school to post-school activities.
All children, whether or not they have a disability, have rights, talents and dreams. For students with special
needs, the key to a smooth transition to adulthood lies in recognizing their
unique gifts, abilities and goals. Transition can be much more successful if a student has access to all the supports and services that permit
him or her to live as independently as possible.
Under the Individuals with Disabilities Education Act (IDEA) and the Rehabilitation Act, students with disabilities have the right to substantial assistance in making the most of their transition years. Students covered by IDEA are required to begin transition
planning at age 14, with at least a statement in their education plan (IEP) of the supports and services that they’ll need during their high school years. By age 16, students
covered by IDEA are legally required to have a transition services plan (TIEP) covering all their needs to move toward successful adulthood.
However, they don’t always get the services they’re entitled to. That can be because the law and regulations are not well
understood, because providers are short on money or time or because the student’s transition team lacks an energetic, knowledgeable and determined leader.
The student and his or her team select goals for adulthood. The activities and services in the plan are designed to reach those goals. The outcome must be based on the
student’s needs, preferences and interests.
Some goals and services to be considered during the transition are:
• vocational rehabilitation
• vocational counseling
• vocational training
• college
• career, trade or profession
• integrated employment (alongside non-disabled colleagues)
• supported employment
• self employment
• continuing and adult education
• adult services
• assistive technology
• independent living
• community participation (experiences such as attending church, taking public transportation, using the library)
Because not a lot of emphasis is placed on meeting the needs of individuals with
special needs once they finish high school, families can turn to The National Disability Rights Network (NDRN) for assistance and advocacy.
The National Disability Rights Network is a federally mandated, non-profit membership organization created to protect and advocate for basic rights for individuals with a wide range of disabilities,
including, but not limited to, those with cognitive, mental, sensory and physical disabilities. The NDRN members ensure accountability in education, health care, employment, housing, transportation and within the juvenile and criminal justice systems. They also investigate reports of abuse and neglect, and seek systemic change to prevent further incidents.
Well-managed transition years can be a time to prepare for adulthood, make workable living
arrangements and line up the services and technology that can supply freedom,
competence and mastery of life for a young adult with autism..
Temple Grandin was thrust into the national spotlight
nearly one year ago year after the release of HBO’s critically acclaimed movie, Temple
Grandin. She then became a near-household name last month after Claire
Danes, who portrayed her in the film, took home a Golden Globe award for her
performance.
However, few are aware that prior to the hit HBO film,
Temple Grandin was featured in a 2006 BBC
Horizon documentary, giving a fascinating glimpse
into her life and mind.
The Woman Who Thinks Like A Cow tells the true-life story of Dr. Grandin, who has autism and is a professor at Colorado
State University, specializing in the field of animal science.
In addition to the Golden Globes award, Grandin’s HBO movie was also nominated in 15
Emmy categories and received 5 awards, including Outstanding Made for Television
Movie and Best Actress in a Drama for Danes.
Grandin’s story has single-handedly shattered the misconceptions and
expectations of what people with autism can achieve in their lives and has
become an inspiration to many.
The Woman Who Thinks Like A Cow, differs from its HBO counterpart because
it shows the real Temple Grandin at work and in her element. As a
result, the viewer feels like they are getting a glimpse into what the world is
like from the vantage point of someone who grew up with and conquered autism.
Temple Grandin has a highly controversial and
groundbreaking theory that the autistic mind is closer to the animal mind when
it comes to perceptions of the world around us.She describes these minds like that of a prey animal, frightened and highly sensitive to outside stimuli. This includes being easily
startled by strange sights and sounds and constantly feeling alert and anxious.
Temple uses her intuition to understand the animal mind and associates it with
her own struggles with constant anxiety. This has enabled her to make a major
impact on animal welfare, in particular, the treatment of cows. She has been
instrumental in modifying the ways these animals are held, moved and slaughtered
and has developed numerous innovations in the humane treatment of beef
cattle. In fact, it has been reported that
nearly half of the cattle in the United States now go to slaughter in humane equipment designed by Temple Grandin.
The Woman Who Thinks Like A Cow is more than just
the story of Temple Grandin.This
short film also tries to address how our understanding of autism has progressed.For many years, during the fifties and sixties, many psychologists and
doctors were of the opinion that autism was an emotional disorder,
brought on by a disturbed childhood.Psychologist
Bruno Bettelheim believed that children developed autism because their mothers
had consciously or subconsciously rejected them as babies, and he consequently
believed that children with autism could be cured with psychotherapy.
When Temple Grandin was a baby, autism research was in its
infancy and many doctors didn’t even have a name for her condition.In her own words, as a young child Temple demonstrated “all the
full-blown symptoms of autism.”Many
children like her were even institutionalized.
With intensive tutoring and special care, it still took her many years to learn
basic skills.To this day, social
situations are still a struggle for her.But
approximately twenty years ago, Temple did something no one with autism had ever
done before — she wrote an autobiography entitled, "Emergence: Labeled
Autistic," which was her story of what it was like to grow up with
autism.Since then, she has written
several other books on autism and her life has been a revelation for parents
and scientists, providing much-needed understanding and insight into the inner
workings of the autistic mind.
Labeled "mentally retarded" when she was just three years old, Temple
is now an associate professor of animal science, a best-selling author and now
arguably the most famous person with autism in the world.
The much-overlooked 2006 BBC documentary is available for viewing below and is highly
recommended:
The International Day of Prayer for Autism and Asperger’s Syndrome aka
"Autism Sunday," will be observed this
Sunday, February 13, 2011. The annual event, which was originally started in 2002 by
UK
residents Ivan and Charika Corea, has since grown into a worldwide phenomena and is observed on the second Sunday in February. Churches of all denominations around the world have
been asked to pray for the autism community and others affected by the disorder.
Additionally, autism advocates have called others to participate in an
"Autism Sunday Twitter Storm," which will be held on the same day.
Everyone with a Twitter account has been asked to tweet as much as possible
about autism, using the hash tags #Autism and #AutismSunday.
If your church does not have plans to participate in Autism Sunday, we encourage
you to send an email or make a phone call asking them to mention Sunday’s event
during service or directly participate in it. Additionally, a note in your
church’s weekly newsletter or bulletin would also help a great deal in raising
awareness about this important event.
Meaningful, heartfelt prayer is a powerful way to establish intimacy with
God. More importantly, corporate prayer (collective prayers from a group) can go
a long way in making an impact in other people’s lives.
Please spread the word about this Sunday and help make an eternal difference for those with
autism, which is estimated to directly affect 67 million people around the
globe.
The University of Rochester Medical School recently
published a report entitled, ¨Popular Autism Diet Does Not Demonstrate Behavioral Improvement." The small, tightly controlled study on the effects of a gluten-free, casein-free (GFCF) diet found that it made no appreciable difference in the behavior, sleeping, or digestive habits of twenty-two children aged two-and-a-half to five-years-old. Results of this study were presented in the tone that desperate parents of children with autism will believe anything when it comes to cures.
A significant aside was that the study did not address a subset of children with autism – those with gastrointestinal problems. But a
2010 study conducted by the Autism Treatment Network shows that GI symptoms occur in nearly
one-half of children with autism spectrum disorders and the prevalence increases as children get
older (calling into question the age group of the study’s subjects). Children with GI problems suffer from more stomach problems, sleep disorders, behavior disturbances, and generally have a poorer quality of life.
Researchers are focusing more and more on the gastrointestinal symptoms specific to children with autism. The Autism Network For Dietary Intervention features an array of scientific studies on the topic and Dr. Arthur Krigsman, GI specialist and autism expert, has testified before Congress on the prevalence of this phenomenon
known as ¨autistic enterocolitis" (This is the area that the much-maligned Dr.
Andrew Wakefield focused on and an issue that should not be cast aside with his
study).
The prevailing wisdom is that some people with autism spectrum disorders cannot properly digest gluten and casein, which form
peptides or substances that act like opiates in their bodies. The peptides then alter the person’s behavior, perceptions, and responses to his
or her environment. Some scientists now believe that these peptides trigger an unusual immune system response in a significant number of children with autism.
Additionally, a large number of children on the autism spectrum also have
underlying allergy issues, which can be exacerbated by certain foods, including
those containing dairy, wheat, and soy.
Gluten is a protein found in wheat and other grains, including oats, rye, barley, bulgar, and spelt. It’s also found in food starches, semolina, couscous, malt, some vinegars, soy sauce, teriyaki sauce, flavorings, artificial colors, and hydrolyzed vegetable proteins.
Casein is a protein found in milk and foods containing milk. It also may be added to non-milk products such as soy cheese and hot dogs in the form of caseinate.
Eliminating these proteins from the diet of a child with autism has been
reported by many parents to show mild to even dramatic results.
Before starting a GFCF diet, it is essential to consult a doctor who should screen your child with an IgG Elisa food allergy test. A blood sample sent to a lab will reveal what foods your child should limit and what foods your child should avoid altogether.
For some children, the GFCF diet isn’t enough. The Specific Carbohydrate Diet (SCD) eliminates all starch and has an exhaustive list of permissible and non-permissible foods.
Augmenting these diets with doctor recommended vitamins and supplements ensures your
child’s nutritional well being and lays the foundation for their improvement.
It’s amazing that the scientific community will often make sweeping assertions based upon a single
study and as a result, end up throwing the baby out with the bath water.
An appropriate diet for a child on the
autism spectrum is something that should at least be considered as a potential
treatment option, assuming it is done with the consultation and oversight of a
licensed medical physician.
