Sorry for not posting anything for a long time. Besides being swamped with work (for a residential facility hellbent on moving institutionalized individuals into the community; will get into this in another post), they updated their network servers which now block my ability to blog at work (the nerve, right??). It winds up being easier to post to the Beyond Autism Awareness Facebook page , or tweet links and stories on Twitter. Like the rest of you, I am usually too busy or tired after work to post anything of value, or more likely than not, life in general just gets in the way. But that’s commonplace for families on the Spectrum, so I know you understand.
Sooo, what’s new on this end? Well just a few things, really. Mike continued to learn new things in his Computer class given by the Nassau County PAL Special Needs Unit, and is continuing to make progress in school. He had a successful season with his Farmingdale Splash friends that culminated in winning 2 medals at a Special Olympics swim meet. He was really proud of himself, and of course, so were we.
He also had 2 of his drawings featured at the Long Island Children’s Museum, alongside some of his peers.
Last but not least, he wrote a short biographical piece that will be featured on The Golden Hat Foundation’s Blog page.
All in all, it’s been a really hectic year so far, and I hope it continues; every step regardless of how small is always a step forward.
Peace to you all. -Ed
Picking at a muffin in a campus cafe, Laura Mackenzie says she and her parents thought she’d go to college, “but pretty much everyone else didn’t.”
Cheerful and matter-of-fact, the 23-year-old recounts troubled years that included difficulty walking and expressing herself, tantrums, inability to interact with people and cringing from physical contact.
She remembers seeing kids playing and not having a clue what to say to them, “although I wanted desperately to join them,” she says.
She was diagnosed with autism at age 7. But she was obviously intelligent.
Armed with her own determination, her parents’ enthusiastic support and some help from special programs in school and college, here she is, earning a bachelor’s in behavioral science at Metropolitan State University in Denver.
“To put things into context, people thought I’d be in a mental institution,” says Mackenzie, who says she processes information and expresses herself relatively slowly but now belongs to two honor societies. “Looking back on it, it’s almost funny.”
For the uninitiated, it’s hard to understand how someone having trouble dealing with everyday life can achieve academically.
But it can happen with autism, and as a rising percentage of children are reported to have the disorder, a growing number of colleges and universities are offering programs to help them with the college experience.
“These are spectacular kids; they think about the world differently,” says Mitch Nagler, director of the Bridges to Adelphi program at Adelphi University in Garden City, N.Y. “We have kids here who got 800s on their SATs, … but they definitely have problems.”
One student at Eastern Michigan University has published three graphic novels but can get lost going from one of his classes to another — even though they’re in adjacent buildings — without practicing how to get there.
“Without question, he will always be under the care of someone,” says Dr. Patricia Lemerand, clinical director of the Autism Collaborative Center at EMU.
Getting extra help
Students with autism must do the assignments and take the tests, just like anybody else. But higher ed institutions are required by law to offer some academic accommodations, including note-taking services, longer times to take tests and separate locations for taking exams.
Some colleges go much further, depending on the needs of the individual. Their services can include frequent meetings with students, accompanying them or doing whatever else it takes to ensure they know how to get to class, plan ahead on assignments and tests, feel at ease socially and even eat and shower regularly. Staff members and peer mentors will also intervene with professors on a student’s behalf about what the student needs. Some students get their own bedrooms, because dealing with roommates can be too stressful.
The extra services can come at a cost. At Adelphi, for example, parents pay $2,620 per semester — on top of tuition — for what Nagel says is one of the most comprehensive programs in the country.
Fees for EMU’s program, which can be very intensive, range from $4,500 to $7,500 a semester. Others are less expensive, including Colorado State University’s, which costs $1,500 a semester.
Some parents and kids shop around for programs with the best fit, meeting with program administrators before applying to schools.
Just getting the kids to the college level can require a tremendous investment of time, money and effort, and with those extra fees, poor and minority kids can be left behind, program directors say. High schools in poor neighborhoods may have fewer services, leaving students unprepared to go to college.
The percentage of reported cases of Autism Spectrum Disorder (ASD) among children has climbed dramatically, with cases reported in all races and ethnic groups. It’s more prevalent among males than females. The overall percentage rose from 1.16 percent of children aged 6 to 17 in 2007 to 2 percent in 2011-2012, according to the Centers for Disease Control and Prevention. Most of the increase stemmed from boys and adolescents, aged 14-17. The rise is attributed mainly to better detection and reporting.
At least two dozen colleges and universities in the U.S. have special programs to help students with autism, and the number of programs is “growing every month,” says Dr. Jane Thierfeld Brown, a longtime disabilities expert who teaches colleges how to help autistic students. Programs are often a collaboration of several departments, such as psychology, social work and education, with graduate students serving as peer mentors.
Developing social skills
ASD includes a host of neurological conditions, with varying degrees of difficulties with language and communication, and rigid patterns of thought and behavior.
Students with ASD, which includes Asperger’s syndrome, can be poor at planning ahead, getting organized, standing up for themselves, reading body language, knowing how they come across to people and thinking other than in a linear, literal way. They may be brutally honest in their conversation and come off as aloof, arrogant, odd or clueless about what’s going on.
But they can be trained to be more aware, diplomatic and assertive in an effective way — skills needed for college, “the most social place you can think of,” says Brown, author of The Parent’s Guide To College For Students On The Autism Spectrum, published in 2012.
Students are together for meals, classes and in dorms, and are often racing to classes along with hordes of other students. “Even when they eat, sleep, wash, it can be overwhelmingly people-oriented,” Brown says.
People with autism can also be overwhelmed by stimuli such as bright lights, strong smells and loud sounds, all of which can be part of the college setting.
At the University of Arkansas, one student doesn’t want to attend football games because they’re too loud. But many students outgrow such issues by college, according to Dr. Aleza Greene, director of the school’s Autism Support Program.
Still, students with autism have different traits and must be evaluated very carefully before a plan of action is drafted. “Our saying is, ‘If you’ve seen one, you’ve seen one,’” Nagler quips.
Some students may not divulge that they’re autistic and thrive without help. Others need a broad range of services, but the goal is to teach them, through repetition and practice, what might be second nature to other students.
Some students think they don’t need help, but their grades say otherwise. “I tell them, ‘You may want to rethink your approach,’” says Greg Root, assistant director of Metro State’s Access Center for Disability Accommodations and Adaptive Technology.
The first year, as with many students, is the toughest, requiring a sudden, drastic change in degree of independence and academic structure.
Many students with autism take less than a full course load each semester and graduate in more than four years. Students delve into a variety of subjects. Nagler’s students have majored in math, physics, communication, accounting, history, biology, business, economics, art, sports management and other fields.To prepare for the world post-college, students can get career counseling and help preparing for job interviews. Some employers seek out individuals with ASD, says Julia Kothe, director of CSU’s Opportunities for Postsecondary Success Program.
Kothe and others with autism programs marvel at how attitudes have changed. Nagler recalls people’s reactions when he did a year-long study in the New York area in 2006 on whether such services were needed in colleges.
“Some said, ‘We don’t want those people here,’” remembers Nagler.
Mackenzie says she likes talking about autism. “I want to spread information about it,” she says. “I want the whole world to know.”
- DOE, UMaine launch autism resource, research institute (mainedoenews.net)
- Students with disabilities finding new college options (foxnews.com)
- Autistic Students Find Support At Marshall University (beyondautismawareness.wordpress.com)
- Autism, learning disabilities services grow on college campuses (csmonitor.com)
I saw this this morning and wasn’t sure if it was hype or not. I have not yet seen any other posts or articles about this product. Typically, I am skeptical, but there are those affected by Autism that would likely look into this. -Ed
Philadelphia, PA – Olfactory Biosciences Corp.’s today announced that its Chief Scientist Dr. V. Ruth Pinney has invented a proprietary NOXO Autism Balm™ that reduces coping behaviors.
Dr. Pinney was interviewed recently and she shared that what makes NOXO’s Autism Balm (TM) unique is that it, “Is a simple, but powerful way to ‘tone down’ their overwhelming perceptions. The Autism Balm works well with most children that have Autism Spectrum Disorders (ASD). It is successful because it targets sensitivities naturally, changing the child’s perception to sensory inputs in a direct, safe way!”
Dr. Pinney explains, “A child whom presents symptoms with ASD perceives the world through his or her senses in a different way than most of us. Many are super-tasters and smellers, super feelers, etc.” NOXO’s approach is treating ASD through the powerful Olfactory Nerves or Sense of Smell. Further she explained, “Since Autism Balm is simple to use, safe and effective and is not a medication, the child can easily carry it around with them and use it when they think that they need it.”
It works very well on its own or with other Autism Spectrum therapies as an adjunct. NOXO Autism Aid™ will also assist in supporting the child in eating a variety of nutritious foods. NOXO Autism Balm™ is similar to a lip balm but is applied just below the nostrils on the upper lip, allowing the natural formula to be inhaled and take effect. NOXO’s solution is safe, easy to apply and non-invasive. It works on your body’s natural processes and responses.
Olfactory Biosciences Corp.’s NOXO division is focused to develop a variety of products targeting Olfactory Receptors for the desired effect. These alternative medicine wellness products may modify behavior or provide relief to common behavior challenges such as anxiety, smoking or weight control, as examples.
One definition of ‘insanty’ is doing the same thing over and over again, and expecting different results. If this is indeed the case, the US Dept. of Health and Human Services, their lawyers and in fact the government, are all insane. How else would you describe their endless cries of “vaccines don’t cause autism” but agree that vaccines (eventually) cause autism by causing an initial injury. So… paying millions of dollars toward the care of two autistic children is… generosity? a gift? a coincidence? The government will pay for ABA and other approved autism-related therapies for these children, but will deny that vaccines are at the root of the problem. Textbook Big Pharma legal mumbo-jumbo at work here. Sheer insanity -Ed
VACCINE COURT AWARDS MILLIONS TO TWO CHILDREN WITH AUTISM by David Kirby, via The Huffington Post.
The federal Vaccine Injury Compensation Program, better known as “vaccine court,” has just awarded millions of dollars to two children with autism for “pain and suffering” and lifelong care of their injuries, which together could cost tens of millions of dollars.
The government did not admit that vaccines caused autism, at least in one of the children. Both cases were “unpublished,” meaning information is limited, and access to medical records and other exhibits is blocked. Much of the information presented here comes from documents found at the vaccine court website.
Some observers will say the vaccine-induced encephalopathy (brain disease) documented in both children is unrelated to their autism spectrum disorder (ASD). Others will say there is plenty of evidence to suggest otherwise.
What’s more, these cases fit the pattern of other petitions, (i.e., Poling and Banks) in which the court ruled (or the government conceded) that vaccines had caused encephalopathy, which in turn produced permanent injury, including symptoms of autism and ultimately an ASD diagnosis.
And most of these children now have taxpayer dollars earmarked for applied behavioral analysis (ABA), an effective therapy specifically designed to treat ASD.
Meanwhile, parents, grandparents, friends and neighbors of both children testified they were developmentally normal, if not advanced for their age when they developed seizures, spiking fevers and other adverse reactions to their vaccines. According to these eyewitnesses, the children never fully recovered, and instead began losing vocabulary, eye contact and interest in others around them, all classic symptoms of regressive autism.
In the first case, involving a 10-year-old boy from Northern California named Ryan Mojabi, the parents allege that “all the vaccinations” received from 2003-2005, and “more specifically, measles-mumps-rubella (MMR) vaccinations,” caused a “severe and debilitating injury to his brain, described as Autism Spectrum Disorder (‘ASD’).”
The parents, who did not want to be interviewed, specifically asserted that Ryan “suffered a Vaccine Table Injury, namely, an encephalopathy” as a result of his MMR vaccination on December 19, 2003.” (“Table injuries” are known, compensable adverse reactions to immunizations.)
Alternatively, they claim that “as a cumulative result of his receipt of each and every vaccination between March 25, 2003 and February 22, 2005, Ryan has suffered . . . neuroimmunologically mediated dysfunctions in the form of asthma and ASD.”
In vaccine court, the U.S. Department of Health and Human Services acts as the defendant and Justice Department attorneys act as counsel.
In 2009, Ryan’s case was transferred to vaccine court’s Autism Omnibus Proceedings, according to the docket. A year-and-a-half later, the government conceded that MMR vaccine had indeed caused Ryan’s encephalopathy.
HHS agreed that “Ryan suffered a Table injury under the Vaccine Act — namely, an encephalitis within five to fifteen days following receipt,” of MMR, records show. “This case is appropriate for compensation.”
Whether HHS agreed with Ryan’s parents that his vaccine-induced brain disease led to ASD is unknown. The concession document is under seal.
In December 2003, when Ryan was nearly two, he received his first MMR and hepatitis B vaccines before his family left for an extended trip overseas. That day, his mother testified, Ryan began shaking with uncontrollable tremors and “was really uncomfortable, he didn’t feel well at all.”
The nurse at Ryan’s pediatrician said the symptoms were “pretty normal after the vaccination,” and advised Tylenol. The next day, Ryan began crying, “but it’s not a normal crying,” his mother testified. “He didn’t go to sleep, he was without energy.”
The family considered postponing their holiday, but that wasn’t feasible. The doctor’s office said it was fine to travel. Prior to leaving, Ryan’s mother said, the boy had difficulty breathing and “was without energy and sleepy.” He could no longer hold his head up, something “he could do prior to the vaccinations.” At the airport, Ryan began “screaming,” she recalled. “He was just opening and closing his eyes so hard, he was pulling my hair.”
After his shots, she added, Ryan “stopped saying those words that he had, even mommy and daddy, that he had repeated a hundred times before.”
In early January, while still abroad, Ryan was rushed to the hospital with vomiting, high fever and red spots covering his body “from head to toe in a measles-like rash,” the attending physician said. Ryan was diagnosed with “febrile convulsion, probably related to MMR.”
The next day, another doctor diagnosed him with “high fever, skin rash, tremors, and lethargy,” which were “most likely due to an adverse reaction to multiple vaccines he received earlier.”
Two days later, Ryan returned to the hospital with a persistent fever of 104 or more.
Ryan’s parents testified that, upon returning home, they expressed worry to their pediatrician about behavioral problems, non-responsiveness and language loss, which later produced an ASD diagnosis.
At trial, however, the government argued powerfully that written medical records, and the recollections of Ryan’s doctor, were inconsistent with his parents’ testimony. If Ryan had truly suffered an MMR encephalopathy, for example, his family would never have taken him overseas. And his parents’ complaints of ASD symptoms were raised a full year after returning from abroad, they alleged. It looked like the family had a weak case.
But then something changed.
In October, 2010, Ryan’s attorney filed four new exhibits (under seal) and proposed amending the court’s “findings of fact.” In January and May of 2011, several more exhibits were filed, along with a motion to further supplement the findings of fact.
A month later HHS conceded the case, which moved into the damages phase.
Award details were announced a few days ago: A lump sum of $969,474.91, to cover “lost future earnings ($648,132.74), pain and suffering ($202,040.17), and life care expenses for Year One ($119,302.00),” plus $20,000 for past expenses.
Another undisclosed sum, several millions more, will be invested in annuities to cover yearly costs for life, which could total $10 million or more, not accounting for inflation. Nearly $80,000 was earmarked for ABA in the first two years.
The second case involves a girl named Emily, whose mother, Jillian Moller, filed back in 2003 and has been fighting in vaccine court since. The docket, crammed with 188 items, documents Moller’s extended but victorious struggle to win compensation for Emily, who has seizure disorder and PDD-NOS, a form of ASD.
Moller alleged that Emily was severely injured by a reaction to the DTaP vaccine at 15 months (when MMR, HiB and Prevnar were also given). “She had a vaccine reaction and she just spiraled out of control,” Moller said in an interview.
Emily’s fever spiked to 105.7 and she began screaming. She stared blankly and developed seizures. Before long she began “shaking episodes” at night and “repetitive behaviors, including arm flapping and spinning,” court documents show. Like Ryan, she developed a measles-type rash.
Things went from bad to worse. Emily’s medical record is filled with damage and suffering. One neurologist, for example, noted that Emily “had staring spells and an abnormal EEG.” Another diagnosed “encephalopathy characterized by speech delay and probable global developmental delay that occurred in the setting of temporal association with immunizations as an acute encephalopathy.”
Moller filed for an encephalopathy Table injury in 2003, unaware her daughter would be diagnosed with ASD.
Two hearings were held in 2005. “I was badgered and harassed for four hours on the stand,” she said. “They said Emily couldn’t have been that sick, or else I would’ve taken her to the ER. But I took her to my doctor and he said not to bring her to the hospital!”
Government lawyers insisted that Emily had suffered neither a vaccine injury nor encephalopathy. But every alternative cause they suggested “made no sense, because she showed no signs of those things before that vaccination,” Moller said.
The case dragged on for years, with motions and counter-motions, status reports and expert medical reports. In 2007, Moller filed for summary judgment. That also took years, as more medical records were submitted to bolster Emily’s case.
After the ASD diagnosis, the judge reportedly became convinced that Emily would prevail. “My attorney said she was angry, she felt forced into a corner with no choice but to find for us,” Moller said. “She said, ‘Emily has autism, and I don’t want to give other families who filed autism claims any hope.'”
The government agreed to settle. Last spring the case went into mediation and, on December 3 HHS made its proffer, which was entered into the record on the 28th. Emily was awarded a lump sum of $1,030,314.22 “for lost future earnings ($739,989.57), pain and suffering ($170,499.77) and life care expenses for Year One ($119,874.88) plus $190,165.40 for past expenses.” Some of that money will go to ABA therapy.
Based on the first year payout, another estimated $9 million will buy annuities for annual expenses through life, which after inflation has the potential to pay over $50 million dollars.
HHS did not admit that vaccination caused encephalopathy or autism, but merely decided not to dedicate more resources to defending the case.
“I don’t understand why they fought so hard,” Moller said. “We had the evidence: the EEG, the MRI, everything was consistent with encephalopathy, post-vaccination. How can government attorneys claim what our doctors said happened, didn’t happen?”
Perhaps the feds were loath to concede yet another vaccine case involving autism. Four cases in the Autism Omnibus Proceedings were recently compensated. Three of those cases are marked with asterisks, indicating the government did not conclude that autism can be caused by vaccines. But the fourth autism case that was paid out in 2013 (Ryan’s case? We don’t know) has no such caveat.
As for Emily, she is “not too good,” Moller said. “Her emotional state is fragile, at best. She has seizure problems and autoimmune issues… And it’s a constant fight when you have a vaccine-injured child. It’s not just the disability, it’s the ignorance. The hatred from the medical community towards families like ours is intense.”
Meanwhile, even as HHS says it “has never concluded in any case that autism was caused by vaccination,” it is still underwriting autism treatments such as ABA for children in its vaccine-injury program.
- Italian Court Rules MMR Vaccine Causes Autism (irenealia.wordpress.com)
Monday, 25 June 2012 As an estimated half-million autistic kids begin to come of age in the United States, the world is watching a group of producers, writers, actors and community leaders who gathered together Friday to address the next uncharted frontier in autism.
Few introductions were needed as they filled the small studio at Exceptional Minds, a nonprofit vocational school and working animation studio being lauded as one solution for young adults on the spectrum who have aged out of the system. Exceptional Minds is the brainchild of Hollywood visionaries and other leaders, many of whom gathered at the studio for an open house Friday, June 22, to mark Exceptional Minds’ first successful year.
Among those present were Ed Asner, legendary actor and autism activist; Yudi Bennett, recipient of the Directors Guild Frank Capra lifetime achievement award and co-founder of Foothill Autism Alliance; Barbara Helfing, former principal of the Frostig Center for Educational Therapy; Cathee Weiss, who works for Hebrew Union College; Susan Zwerman, Grammy Award winner visual effects producer; Ron Burns, previously President of Global Business for J. Walter Thompson ad agency; Ivan Rosenberg, who has consulted for USC’s School of Cinematic Arts Entertainment Technology Center; and Molly Burns Keith, previously Vice President of Christie’s Jewelry, Los Angeles.
Most had met before, many times, and in many different scenarios as they each navigated the complex, often painful world of parenting or grandparenting a child on the autism spectrum. These are the founders of the grassroots organizations that anyone with an autistic child knows well, the very pioneers who started schools and raised funds for autism research. They had moved along the same trajectory of circumstances as their kids grew, solving problems as they arose and setting off a huge tidal wave of autism practices, research and services that benefit so many others today. Now, as their ASD children and grandchildren – and thousands of others like them across the country — move into the adult world with limited social services and few job prospects, they are charting the next frontier in autism services.
“We owe a huge debt of gratitude to these people for their time, their dedication and most of all, their vision of Exceptional Minds and what this school and others like it mean to the future of those on the spectrum,” said Exceptional Minds Program Director Ernie Merlan on Friday.
Exceptional Minds is the brainchild of these pioneers, who established the school in 2011 as a bridge between high school and the working world for ASD individuals. It is one of the first vocational schools and working studios to prepare visually-gifted young adults on the spectrum for employment. The three-year Exceptional Minds program includes technical training for Adobe (ACA) certification, job readiness skills and a professional reel/portfolio that graduates can use to seek employment in the fields of animation, computer graphics and visual affects.
“These students are excited about what they are doing here. Most of them would be on the computer anyway. We’re just taking what they are already interested in and helping them make a career out of it,” added Merlan.
As a working studio, Exceptional Minds students worked on three film projects in the past year, including closing credits for The Weinstein Company movie Lawless, which was accepted into the prestigious 2012 Cannes Film Festival competition.
With an impressive list of successes its first year, Exceptional Minds is being lauded as one example of how to integrate into society more than 500,000 ASD individuals about to come of age in the next decade. One in 88 children is diagnosed with autism today.
The school started with 11 students its first school year ending Friday and will expand to more than 15 students for the school year ending in 2013. In addition, Exceptional Minds offers summer workshops for high schoolers and others on the spectrum interested in developing short takes, animations and short video games.
About Exceptional Minds:
Exceptional Minds is a non-profit vocational center and working production studio for young adults on the autism spectrum. Chartered in 2011 to provide the training necessary for visually-gifted ASD individuals who may not otherwise be able to make the transition from high school to the working world, Exceptional Minds offers technical proficiency and work readiness skills that prepare students for careers in graphic arts, animation, web design, visual effects and rotoscoping.
- Hollywood, Autism Pioneers Answer “What’s Next” for Autistic Kids Aging Out of the System (pr.com)
- Exceptional Minds Marks First Year as Vocational School and Working Studio for Young Adults on Autism Spectrum (pr.com)
This would indeed be big news, however, like many promising scientific discoveries, it may be years or decades until it is proven to be a useful diagnostic tool. And perhaps longer to develop any meaningful directed therapies.
An important step towards developing a rapid, inexpensive diagnostic method for autism has been taken by Uppsala University, among other universities. Through advanced mass spectrometry the researchers managed to capture promising biomarkers from a tiny blood sample. The study has just been published in the prestigious journal Nature Translational Psychiatry.
There are no acknowledged biomarkers for autism today. Researchers at Berzelii Centre and the Science for Life Laboratory in Uppsala who, in collaboration with colleagues at Linnaeus University in Sweden and the Faculty of Medicine in Tehran, Iran, who have discovered some promising biomarkers.
Many diseases are caused by protein alterations inside and outside the body’s cells. By studying protein patterns in tissue and body fluids, these alterations can be mapped to provide important information about underlying causes of disease. Sometimes protein patterns can also be used as biomarkers to enable diagnosis or as a prognosticating tool to monitor the development of a disease. In the current study disruptions of the nervous system were in focus when the scientists studied protein patterns in autism spectrum disorder (ASD).
To identify potential biomarkers (peptides or proteins), the researchers performed a detailed protein analysis of blood plasma from children with ASD compared with a control group. Using advanced mass spectrometric methods, they succeeded in identifying peptides consisting of fragments of a protein whose natural function is in the immune system, the complement factor C3 protein.
The study is based on blood samples from a relatively limited group of children, but the results indicate the potential of our methodological strategy. There is already a known connection between this protein and ASD, which further reinforces the findings, says Jonas Bergquist, professor of analytical chemistry and neurochemistry at the Department of Chemistry – BMC (Biomedical Centre) in Uppsala.
The hope is that this new set of biomarkers ultimately will lead to a reliable blood-based diagnostic tool.