Dr. Temple Grandin sits down with Nancy Asplaugh-Jackson from Autism Live to discuss children on the milder end of the autistic spectrum. Very informative and inspiring.
Category Archives: Autism in the News
Autism Wandering
Have you seen the new Autism Wandering PSA yet? Watch and share to raise awareness!
Miami’s Autism Card
The University of Miami Center for Autism and Related Disabilities (CARD) partnered with the Coral Gables Police Department and the Disability Independence Group (DIG) to create ID cards so people with ASD can present themselves as such when interacting with law enforcement.
The idea came about after some young adults with autism were arrested for exhibiting “suspicious” behavior after being pulled over while driving when, in fact, they were simply responding with behavior that is characteristic of ASD.
With the help of the ID card, police officers will be able to know why a person may not be making eye contact, speaking, or reacting in an expected way.
The card features a bio-dot section, which allows drivers with autism to show how they are feeling by pointing to one of four options: relaxed, calm, nervous or tense.
I love this idea because it not only gives people with ASD a tool, but increases law enforcement’s awareness of ASD with that same tool. I think every state needs this!
“Autism Balm”
Dr. V. Ruth Pinney has been researching and working with autistic individuals’ brain chemoreception pathways with a view to changing the reactions to the specific sensory perceptions.
About one-third of people on the autism spectrum are hypersensitive to odors, and these reactions can lead to eating disorders and other behavior disorders. Hypersensitive autistic smellers and tasters tend to have poor appetites, gag easily when offered food and eat only a few foods that they can tolerate the smell of. Even normal or pleasant odors may be perceived by them to be malodorous and disturbing.
Dr. Pinney created NOXO Sensory Balm™ to help “tone down” the perception of smells by the brain by providing a scent that is calming to the brain’s emotional centers. When this balm is applied topically, under the nose, an individual can find relief from odors that trigger coping responses.
This balm was first marketed under the name “NOXO Autism Balm” because of the obvious application for those on the autism spectrum with sensory integration difficulties who need to eat a greater variety of nutritious foods. It is reported to be safe, easy to apply, and non-invasive.
I’ve not yet tried this product, so I welcome the feedback from parents who have. Please let us know about your experience. It truly takes a village…
[Click on the image for more company information]
Vaccines and Autism
Senior CDC researcher Dr. William Thompson has just released a press release/statement regarding the possible link between the MMR vaccine and autism. Apparently, the vaccine research he has been involved in at the CDC since 1998 hasn’t been accurately reported. It will be interesting to watch what ensues.
Click the graphic to see the whole statement.
Road to Recovery
For anyone who has not yet heard of Ethan Fox, he hit the news and Internet about three years ago with his mother, who explained how changing her son’s diet to gluten- and casein-free recovered him from his autistic spectrum disorder.
This is one of the news reports that interviewed Ethan, his mother, and his physician, who did a good job explaining the gut-brain connection and why diet has an impact on neurology.
I strongly disagree with the use and inference of the word ‘cure’ in the video. But ‘reversing’ and ‘recovering’ are wonderful reasons to explore all the options. I believe with all my heart that parents of children on the autistic spectrum remain on the frontlines, demanding, questing, ever-searching for answers with our outside-the-box thinking.
After watching the four-minute video, be sure to check out the Operation Clean-Up steps we’ve taken and continue to take with Corban, and see how much diet has affected his autistic symptoms.
Everyday Hero
This story and video out of New York are a few years old, but I never, ever get tired of watching. Heroes with autism are everywhere, if we only keep our eyes open. I’m inspired.
Autism CARES Act
Last Friday, President Obama signed into law funding for autism research, intervention, and help for young adults with autism. It’s called the Autism Collaboration, Accountability, Research, Education and Support Act, or Autism CARES.
Significantly, this is the first legislation that focuses on the needs of adolescents and young adults, and it also tasks the federal government with researching and anticipating the needs of young adults with autism who will be aging out of the school system in upcoming years.
New TED Talk About Autism
Wendy Chung, a geneticist, discusses what we know and what we don’t yet know about autism in a recent TED talk.
While I don’t agree with everything she says in this 15-minute video, I love the fact that it adds to the dialogue about autism spectrum disorders.
Awareness Requires More Than Waiting
April is, of course, Autism Awareness Month. And this month the yearly observance was preceded by the CDC’s announcement of the prevalence of autism, which is increasing at a dizzying speed: 1 in 68 children in the United States—and 1 in 42 boys—is on the autistic spectrum. This is up from 1 in 88 children a mere two years ago.
The announcement was followed by a call for the government to research and find reasons/answers for these alarming and increasing numbers.
While waiting, it’s clear that parents of children on the autistic spectrum need to be more than aware; we need to remain proactive as our child’s primary advocates.
The choices we make for our children, the paths we choose to follow, the therapies we decide to implement to address the many challenges of autism are intensely personal. And yet, in many ways we’re all struggling with the same challenges. I’m hopeful a more open dialogue between parents will allow us to share what’s working, and what isn’t, in our own families.
With this in mind, I will be including in the pages of this blog some of the things we’ve tried with Corban that have made a significant difference for him. I share this information in the spirit of opening this dialogue as well as offering parents new to this journey a place to start.
I acknowledge right from the start that everything I mention in these pages will not work for everybody. There is no one-size-fits-all approach. There is no magic bullet or magic wand. I’m not a medical professional. And I recognize the spectrum defines a range. However, I’m constantly on the lookout for reasonable, practical, sensible, safe, and non-invasive things to try with Corban to address the challenges of autism. I will freely share these with readers of this blog in the hope that you, too, might find them helpful.
Regardless of the future numbers from the CDC or the government response to them, as parents we can’t afford to wait.
Looking for Strengths
There is a wonderful article in the October 7, 2013, Time Magazine called “What’s Right with the Autistic Mind,” by Temple Grandin. In it she makes the point that research and therapy have traditionally focused on understanding and compensating for cognitive problems in people with autism. But this emphasis on what’s wrong with the autistic brain has obscured a recognition of something just as important: what’s right with it.
A few years ago there was a Canadian study that showed the measure of autistic intelligence depended on what tests the subjects were given. When autistic children took a test that depended on information gained from social interactions, 1/3 of them qualified as “low functioning.” However, when the same autistic children took a test that depended on providing only nonverbal information, only 5% were labeled low-functioning. And remarkably, 1/3 qualified as having “high intelligence.” The researchers’ conclusion? “We conclude that intelligence has been underestimated in autistics.”
Dr. Grandin goes on in her article to acknowledge that autism is not something wonderful that should be celebrated. But she suggests that “if we can recognize, realistically and on a case-by-case basis, what an individual’s strengths are, we can better determine the future of the individual.” This is a growing concern now more than ever, as the rate of autism diagnoses reaches record levels.
You can read the article here.
New News?
Earlier this year, the Centers for Disease Control published an article about national health statistic reports and changes in the prevalence of Autistic Spectrum Disorders in the United States.
Since 2007, there has been a significant rise in the number of parent-reported ASD diagnoses in school-aged children, especially boys.
Apparently, parents are — and will remain — on the front line as their children’s advocates. I certainly don’t need a study to tell me that!
Read the article in its entirety here.
The Toll of Stress
I read an article recently about a research study published in the Journal of Autism and Developmental Disorders. In 2009 researchers followed a group of moms with autistic children for eight days in a row. The moms were interviewed at the end of each day about their experiences, and their hormone levels were measured to assess their stress.
The gist of the study was that on a day-to-day basis, autism mothers experience more stressful events and have less time for themselves compared to the average American mother. They struggle with frequent fatigue and work interruptions, and spend significantly more time caregiving than moms of those without disabilities. In fact, autism moms have chronic stress similar to combat soldiers.
Mothers (and fathers) of children with disabilities don’t need a research study to tell them this; we live it day in and day out. However, it is vital we pay attention to the physiological residue of stress, which can result in chronic health problems as well as compromised immune functioning and mental activity. We need to stay strong to be our children’s frontline advocates!
Kraft Mac & Cheese Warning Label
Last week the New York Times newspaper published a Kraft warning label found in the U.K. on an imported U.S. box of Kraft Macaroni & Cheese.
The label has two warnings, which read:
Warning #1: This Product May Cause Adverse Effects On Activity And Attention In Children. (This warning label is required because The US version of Kraft Mac & Cheese has artificial food dyes yellow #5 and yellow #6, which are proven to be linked to hyperactivity in children.)
Warning #2: GMO Declaration: Made from genetically modified wheat. May contain GMO. (This warning label is required because the US version of Kraft Mac & Cheese contains GMOs.)
While Kraft denies it uses GMOs in its products, it is obvious and apparent that there are serious concerns with the ingredients in Kraft Mac & Cheese, especially for our children on the autistic spectrum. While Corban has been gluten- and casein-free (as well as free from artificial dyes, flavors, and sweeteners) for several months now, this product isn’t healthy for anyone to consume. I call this a victory in food awareness!
See the New York Times article here.
The MMR Vaccine and Autism
Italian Court Rules MMR Vaccine Caused Autism: US Media Blacks Out Story
By Kristan Harris on June 14, 2013
The debate over vaccines continues as an Italian court ruled in favor of the Bocca family, whose nine-year-old son became autistic after receiving the MMR (Measles/Mumps & Rubella) vaccine.
Valentino Bocca was given the MMR vaccine when he was 15 months old in 2004. The family has stated that immediately after the jab their son began showing signs of serious discomfort. The Bocca family decided to act and took the case to court. Judges determined the vaccine did cause the autism after new evidence was presented and awarded the Bocca family 174,000 euro (£140,000) after the Italian Health Ministry conceded the MMR vaccine caused autism in their nine-year-old son Valentino. After the ruling, Italian lawyers began examining around 100 similar cases, which they believe could lead to more families pursuing court cases.
The U.S. media did not report on this and continues to black out the massive, growing movement worldwide to re-think vaccines based on science and evidence.
The Cost of Autism
There was a study in 2006 that showed the economic costs associated with autism were $35 billion a year. Treatment for a preschool child with autism typically costs over $50,000 a year. The New York Times has estimated that only 10% of afflicted children are getting those services, and as a nation we’re letting down 25,000 more children every year.
Autism is not getting the financial support it needs. In 2005 the National Institutes of Health dedicated only 0.3% of its budget to autism. Though recently the Senate authorized $1 billion for autism research, autism is still behind in private funding. And the number of children diagnosed on the autistic spectrum is growing.
- Leukemia affects one in every 25,000 and has $310 million in private funding.
- Pediatric AIDS affects one in 8,000 and has $394 million in private funding.
- Autism now affects about one in 50, and has only $15 million in private funding.
It’s time to acknowledge that we have a childhood epidemic on our hands, and if we don’t address this we’ll soon have an unprecedented number of autistic girls and boys reaching adulthood with need for support that we’re not in a position to provide.
Michigan’s Autism Goals
(WZZM) Michigan’s state health officials are laying out comprehensive, long-term goals to improve services for children and adults living with autism in Michigan. The goals include creating a state resource center where families and individuals living with autism can get information and be connected to available services. The plan also calls for increasing screening for autism spectrum disorders by primary care and early childhood providers. Click here to see article.
Michigan Autism Council
Michigan Governor Rick Snyder signed an executive order last year to create the Autism Council within the Michigan Department of Community Health (MDCH). The group will be responsible for overseeing the implementation of the Michigan Autism Spectrum Disorders State Plan.
Learn more about the council here: http://www.mi.gov/autism
Red Dye 40 and ADHD
(WZZM) – More than five million children in this country are diagnosed with ADHD, but how many of them truly have the disorder? Could some of those children be eating something that only makes them appear to have the condition? Research has suggested a link between children who are hyper and appear to have ADHD, and Red Dye 40.
What Is Going On?
Last March, the Centers for Disease Control and Prevention (CDC) dropped a bomb going into April’s Autism Awareness celebration: the incidence of autism is now one in 88 children. That is a 23 percent increase since 2009, and even more significantly, a 78 percent since a decade ago.
Today there are almost 1 million children in our country with an autistic spectrum disorder (ASD). The question everyone is asking is: “What is going on?” Is the dramatic increase of autism due to improved diagnostic abilities? Is it genetic? Is it environmental? Is it tied to vaccines? There really is no answer to that burning question, and while some progress has been made, we have a long way to go before we know the answer.
What we can say for sure is there has never been more of a need for “Autism Awareness.”
April is Autism Awareness Month
Biofeedback & ADHD
When we received Corban’s diagnosis of Autistic Spectrum Disorder and ADHD and were discussing support options in December of 2012, the neuropsychologist told us to watch for developments in the area of biofeedback.
Recently the American Academy of Pediatrics recommended Biofeedback as a Level 1 “Best Support” Intervention for ADHD (Attention and Hyperactivity Behaviors). A wonderful group called Neurocore uses a principle methodology of autonomic nervous system regulation through biofeedback, and they’re having wonderful success throughout the United States.
It’s an exciting development and offers a whole new way of looking at our children’s potential and the miracle of how their brains work.
Check out the article here.
My Autism & Me
In this BBC Newsround Special, 13-year-old Rosie takes viewers into her world to explain what it’s like to grow up with autism. Stunning!
The Spark
By Dan McFeely, Indianapolis Star, 3/6/13
Kristine Barnett, mother of Hoosier boy genius Jacob Barnett — whose higher-than-Einstein IQ made him an academic star — has written a book about her experiences raising a genius at her home in Westfield, Indiana.
Jacob’s story was first told in The Indianapolis Star before he began to appear on national television shows like CBS’ “60 Minutes.”
Kristine Barnett’s book, “The Spark,” published by Random House, is scheduled to be released in hardcover April 9 for $25 a copy.
At a very young age, Jacob thrilled his parents and friends by the many things he would do with mathematics. But at the same time, doctors said he showed signs of autism and predicted a lifetime of struggle.
At age 9, however, Jacob began to work on an original theory in astrophysics that some experts think may put him in line for a Nobel Prize. And last summer, at 12, he became a paid researcher in quantum physics at Indiana University-Purdue University Indianapolis.
Officially titled “The Spark: A Mother’s Story of Nurturing Genius” will be sold in 20 countries. Warner Bros. may produce a movie from the book, reports say.
The advance publicity for the book pitches it this way:
“ ‘The Spark’ is the powerful story of one mother’s love and her stubborn refusal to give up on her child. A remarkable memoir of a woman who followed her maternal instincts — even when those instincts ran contrary to her own husband, and the advice of all the professionals, who told her it was hopeless — and even as Jake withdrew further into his own silent world.”
Kristine pulled her son out of special education classes at Westfield and instead let him follow his own academic track — ultimately leading him to IUPUI as one of its youngest students.
Thanks to his mom, Jacob’s autistic-like fascination with things such as shadows on the wall and plaid fabric were encouraged and eventually fostered into his gateway to math, astronomy and physics.
The Barnetts, Kristine and Michael, still live in Indiana with their three sons. They currently run a charitable community center called Jacob’s Place for autistic and special-needs children and their families.
See the original articles here:
Autism Coverage Reimbursement Program
A few months ago, West Michigan’s WOOD News Radio ran a story about Michigan’s New Autism Insurance Coverage Mandate.
The article said that along with requiring medical plan coverage of autism treatments, the state Treasury will help to pay for them.
Michigan’s Autism Coverage Reimbursement Program took effect in October 2012, and under the new state autism coverage laws, health insurance plans can file claims to help offset the cost of the new requirements for autism insurance coverage.
Although the government says more treatments will be available, the Detroit News reports that many families may get little, if any, help anytime soon. There are, apparently, too few specialists in Michigan. Also, some insurance companies, like Blue Cross Blue Shield, are putting limits on the coverage.
Michigan has a website to help with the new Autism Coverage Reimbursement Program that is worth checking out. Click here.
Autism and Early Detection
Signs of Autism Could Occur as Early as 6 Months: Why It’s Good News for Your Baby
by Jacqueline Burt on February 5, 2013 at 4:47 PMAs with so many conditions, early detection is key when it comes to successfully treating autism. That’s why pediatricians look for such telling traits in young children as difficulty making eye contact and/or a lack of general interest in people — these symptoms can predict a later diagnosis with autism spectrum disorders. Until recently, even the earliest “early” detection wasn’t quite early enough — researchers couldn’t tell if these indicators were present during the first year of a child’s life. But a groundbreaking study conducted at Yale School of Medicine found that “deficits in social attention” could be detected in babies as young as 6 months of age who later developed autism.
Said Katarzyna Chawarska, associate professor at the Yale Child Study Center: “This study highlights the possibility of identifying certain features linked to visual attention that can be used for pinpointing infants at greatest risk for ASD in the first year of life. This could make earlier interventions and treatments possible.”
Which, of course, could make a tremendous difference in the lives of autistic children and their families. I’ll admit, my first reaction to this study was one of concern — all I could picture was a bunch of nervous first-time moms driving themselves crazy trying to figure out if their babies were making enough eye contact. But these findings are far too significant to waste time worrying about. This is definitely GOOD news.