I don’t know one person who likes going to the dentist. But the challenges facing a child with autism in the dental chair are multiplied exponentially. Truly, it is a sensory nightmare. My sons go to a busy university clinic with chair after chair in a large, open room, so there’s no privacy and a cacophony of noise.
Before taking them there for the first time, I talked at great length about their needs with the staff, then sat anxiously in the waiting room. Ten minutes later, I heard my son’s familiar blood curdling scream and a doctor shouting, “Sometimes we have to do things we don’t like!” Soon, my son came careening into the waiting room trying to find me with the doctor hot on his heels. Great.
Restraint was out of the question because it would’ve made my son hysterical, so I asked for nitrous oxide during the exam, a private room, headphones playing his favorite music and the same favorite dentist from one visit to the next. All went well from then on, as long as this protocol was followed to the letter.
In retrospect, it would’ve been good if I’d known about social stories or had some other way to prepare them for their first visit. It’s not like I didn’t talk to them at great length, but I’d always forget some element, such as the texture of the toothpaste, the stiff apron — and they really didn’t have a picture of what to expect.
Now, there’s a series of three books that address these kind of experiences. Inspired by her son, author Avril Webster has created the
“Off We Go!” series to help special needs children ages four-to-eight prepare for outings to the grocery store, hair salon and dentist. The books provide a walk-through of what a child can expect and a point of departure for parents to talk about what an impending trip bodes.
I’m a great believer in useful products like seamless socks, noise reducing headphones, chew toys and story books to make foreign environments less ominous, just to name a few. Anything that helps ease our children’s path through their day gets my vote. Small things make a big difference.
In what seems to be an emerging trend in reality TV competitions, another
potential star with autism has been born from the fifth installment of Britain’s
Got Talent. Eleven-year-old James Hobley appeared last night from Manchester,
England and blew judges away with a dance routine that would have made Mikhail Baryshnikov
proud.
Hobley, who admitted to being homeschooled and having autism, received rave
reviews from judges Amanda Holden, David Hasselhoff and Michael McIntyre, all of
whom gave him the thumbs up and advanced him to the next round.
It was just a few years ago that James could barely walk, let alone dance. He
was fitted with special orthopedic boots and splints because of excessive tiptoe
walking (a common symptom of children with autism). However, Hobley overcame his
physical challenges and attributed his dancing to making that happen. He was
even quoted as saying, "When I started dancing, my tendons just got looser and looser until I never had to wear
[the braces] any more."
Appearing in a taped portion of Britain’s Got Talent, Hobley wowed the
audience and judges, once again proving that there is no limitation to what
those with autism can accomplish.
Britain’s Got Talent, which has produced stars such as Susan Boyle and Paul
Potts, is currently in progress and while James may not win the entire
competition, he has certainly come farther than anyone could have imagined just
a few short years ago.
I just read a recent article by a psychiatrist proclaiming that a family with an autistic member needs to “reassess its priorities” and consider professional help in organizing their lives.
She went on to emphasize the importance of parents and caregivers taking time
out for themselves and spending time alone with their partners and other children in the family.
Free associating, I came across a 2009 article in Disability Scoop
report showing mothers of adolescents and adults with autism experience chronic stress comparable to
that of combat soldiers. Levels of a specific hormone connected to stress were found to be very
low — as low as those of active duty military. Over time, this hormonal condition may manifest in immune disorders and other serious illnesses.
In a companion study, the researchers followed up with the same group of mothers to assess their daily lives. These mothers spent at least two hours more each day as a caregiver than mothers of children without disabilities and were twice as likely to be tired and three times as likely to have experienced a stressful event. Additionally, autism moms with outside jobs were interrupted at work one out of every four days compared to less than one out of ten days for other moms.
Yet in a true testament to the dedication of autism mothers, these individuals were just as likely to have positive experiences each day and volunteer in their communities as those whose children were neurotypical.
As for myself, my life is in a constant stage of triage as I prioritize all the important things that need to be done. If I brought in a professional to help me get organized, I know exactly what he or she would say, only I’d have to pay to hear it said. And while the idea of taking time out for myself is a great thought, the reality is that I steal my time alone by staying up too late after my sons are asleep or getting up before they do in the morning.
In evaluating the best cities for autism in Autism Speaks’ recent
list, lack of respite care was the single biggest complaint from parents across the nation. I would love to see a chunk of money from all the walks, runs, banquets and spaghetti dinners during Autism Awareness Month applied to this pressing need. Then all of this great advice about taking time out to replenish ourselves and our other important relationships would feel
doable instead of like grapes hung just out of Tantalus’ reach.
As we all know, Sunday is Mother’s Day. Hats off to all of us as we soldier on.
Leading up to April’s Autism Awareness Month, much media attention was
given to an incredible young man by the name of Jacob Barnett, a 13-year-old
with Asperger’s Syndrome who has a tested IQ of 170 (higher than Einstein’s).
Deemed a child prodigy, Barnett was attending Indiana University-Purdue University Indianapolis
(IUPUI) and taking advanced astrophysics classes as early as 8-years-old.
Jacob made headlines due to a new project where he plans to expand on Einstein’s theory of
relativity. And
according to The Indianapolis Star, he has also set out to disprove the Big
Bang theory.
The stunning revelations have raised a lot of eyebrows, but have not been
discounted. A world-renown astrophysics professor has confirmed the authenticity of
Jacob’s expanded theory of relativity and says that he will be in line for a Nobel
Prize if able to solve.
And asked in an interview about how the earth would have been formed if not for the
Big Bang, Barnett said he "was working on that," creating a lot of
buzz within the creationism community.
Pretty amazing for a child who didn’t speak until he was 2. In fact, his mom
Kristine was quoted as saying, "When he was two, my fear was that he would never be in our world at
all." She was also told by doctors to prepare for many challenges over his lifetime due to
limited communication skills.
The heartening story and background of Jacob Barnett is yet another example of a long list
of individuals on the autism spectrum who have greatly contributed to our
society. Some of these people with autism (both confirmed and suspected) include Daryl Hannah, James Durbin, Alexander Graham Bell, Jason
McElwain, Daniel Tammet, Albert Einstein, Stephen Wiltshire, Tim Burton, Temple Grandin, John Quincy Adams, Ludwig
van Beethoven, Isaac Newton, Wolfgang Amadeus Mozart, Bill Gates, Charles Dickinson, Jane Austen,
Emily Dickinson, Thomas Edison, Henry Ford, Friedrich Nietzsche, Nikola Tesla, Henry Thoreau, John Denver, Jim Henson, Alfred Hitchcock, Howard Hughes, Andy Kaufman, Charles Schulz, Andy Warhol, Bobby Fischer and Leonardo da Vinci — just to name a
few.
In what could be one of the most emotional performances in recent memory on
American Idol, James Durbin performed "Without You, a powerful ballad by
Harry Nilsson from the 1970′s. It was the second performance of the night for
Durbin, who also sang "Closer to the Edge," a song that he used
to open the show. Durbin’s second performance, however, is what American Idol
fans will undoubtedly be talking about at the water cooler tomorrow morning.
Durbin became emotional and nearly broke down, both during and after his
performance. He was also emotional during rehearsals and noted that the song
reminded him of his wife, Heidi and young son, Hunter. Additionally, after his
performance, Durbin pointed to the sky, presumably acknowledging his father who
died when he was only nine-years-old.
From a technical standpoint, it was one of Durbin’s weakest performances of
the season. However, his raw emotion and emotionally moving performance didn’t
leave many dry eyes in the audience.
On Twitter and in message forums, people are already commenting how James needs
to do a better job of keeping his emotions in check. What many may not realize,
however, is that James has been diagnosed with Asperger’s Syndrome and a
characteristic of the disorder for some (not all) is the tendency to become
overly-emotional in certain situations. Coupled with the many months away from
his family and his long journey to get where he’s at, it’s understandable why
James was so moved this evening.
While it wasn’t his best performance, James Durbin once again proved that he
is a well-rounded artist who has much to offer and should be performing in the
American Idol finals later this month.
Individuals with autism have innate visual prowess, as I discussed in a previous
article. Given that children with autism are so visually oriented, it makes perfect sense to engage them in art activities, be it formally with an art
therapist, casually in other classes or at home.
Because children on the autism spectrum struggle with communication, traditional psychotherapy is not a viable option for them, but art therapy is. Art therapists report that children with autism who engage in one-on-one sessions show an improved ability to imagine and think symbolically, enhanced ability to recognize and respond to facial expressions, new ability to manage sensory issues such as a range of
texture and greater fine motor skills.
I used to teach art to preschoolers at community centers. The classes were educational in nature and centered around a theme such as dinosaurs. I had them make things to illustrate what they were learning, like paper mache giant eggs and clay replicas of foot-long pointed teeth. The comment I heard from
most parents was that they couldn’t believe their child’s focus and intensity while in my class. They
marveled that their child was capable of such intentionality and that they could sustain it for a whole hour.
Several of the students came with diagnoses such as ADD or autism, another had been too frenetic and kicked out ballet class, but you wouldn’t know it
– all of them coalesced as a group of dedicated youngsters excited by their art projects. The group became close and the children often went to the playground together after class.
Art demands a level of organization. Children must set up their supplies and clean up afterwards. The many textures are a sensory feast, and for kids with autism, innately therapeutic. I fondly remember how much my sons loved making homemade clay, the feeling of kneading the warm dough, then folding in the colors. I kept easels set up on the porch and they painted nearly everyday. Doing art fostered pride in themselves and their creations.
As individuals who struggle with communication, art gives children on the autism spectrum a powerful means to channel their inner life and experience. At home, you could have your child make his
or her own guide to feelings by having them draw pictures of “Happy,"
“Sad," “Scared," “Mad" or “Frustrated” faces. Laminate or otherwise protect the pictures and have them on hand for your child to identify how he or she is feeling when words cannot. Buy them a sketch book and encourage them to keep a daily art journal. Creative self expression in all its myriad forms is going to be a key to enhancing your child’s well-being.
“Drawing Autism” is a collection of artwork by individuals with autism coupled with interviews of the artists, with a forward by Temple Grandin. It’s a powerful book and in reading it one comes away with an even deeper appreciation of that superior autistic visual ability we’ve been hearing
about. More information on the book can be found here: http://markbattypublisher.com/books/drawing-autism/
Additionally, an organization that focuses exclusively on art therapy for
autism is Philadelphia-based HeARTS for Autism. They are a grass-roots,
volunteer organization and can be found at http://www.heartsforautism.org
.
The ancient art of yoga is proving to have great benefits for children on the autism spectrum. Yoga comprehensively addresses their heightened anxiety, poor motor coordination and weak self-regulation, something that otherwise is very difficult to do.
Yoga is particularly instrumental in helping kids with autism learn self-regulation. By becoming aware of their bodies and aware of their breathing, yoga provides them with the ability to cope when they start to feel anxious or upset.
Many yoga for autism classes teach yoga poses or breathing techniques specifically intended to help children contend with their escalating emotions. Since these children are visually oriented, savvy instructors add a visual element so that the child has a colored picture of each pose near his or her mat. Parents are also given pictures of the poses so that they can do them at home with their child.
Often, classes incorporate other experiences known to benefit a child on the autism spectrum, such as massage, music, dance, rhymes and stories. Music engages the brain and promotes communication. Massage aids in relaxation and facilitates the giving and receiving of affection. Being able to dance about in contrast to the stationary poses of yoga and the addition of the language element of rhymes and stories complete what amounts to amazing and fun intervention.
Some schools go so far as to offer their students with autism yoga in the classroom, which is very smart on their part and helps create a successful classroom experience for autism spectrum students. My son had a teacher in middle school who let him lead the class in yoga and it bolstered his self-esteem and helped him go the last half of the school year with nary a meltdown.
Early on, I realized that managing my sons’ autism was energetic rather than disciplinary. Good teachers know this as well. Parents find that the quality of their child’s life improves through practicing yoga, that they become more communicative,
calmer and sleep through the night. Teachers greet children who demonstrate more focus and less volatility and the child experiences the pride and self confidence that comes with gaining new skills.
In the closing days of Autism Awareness Month, the White House sponsored an Autism Awareness Conference. Senior Adviser to the President, Valerie Jarrett and Secretary of Health and Human Services Kathleen Sebelius,
spoke to an audience of parents, advocates and experts at an Autism Awareness Month Conference at the White House. The speakers touted the fact that because of Obama’s healthcare reform, children can stay on their parent’s insurance until age twenty-six, an advantage for young adults on the autism spectrum. They also committed themselves to the re-authorization of the Combatting Autism Act
(CAA), which is set to expire in September of 2011.
The original legislation was signed by President Bush back in 2006. With its emphasis being research, with some funding for outreach and awareness education, it established the Interagency Autism Coordinating Committee (IACC) to advise the Secretary of HHS on all matters relating to autism and develop and update an annual strategic plan for autism-related research.
Now, the old structures must be transformed into a new National Institute for Autism Research, with the grant making process streamlined to get the most value for today’s dollars. The CAA law provided for research relating to services and support but was not designed to actually fund them. Several bills have been introduced during recent sessions relating to these services, such as training, restraints and seclusion issues, wandering
disorder and infrastructure, but none of these has passed.
Comprehensive national legislation is urgently needed to fund these and other vital issues, particularly as Medicare is under attack and our children with autism will age out of the few resources there are.
And while insurance reform for autism has passed in over 20 states, there is strong popular support for “repeal and replacement,” so CAA 2011 must provide for parity of coverage with other medical conditions and ban all forms of insurance discrimination arising from an autism diagnosis.
In this current political climate where every program is fair game for elimination, passage of CAA 2011 will require a strong grassroots effort. In order to lend your voice to the movement go to:
http://capwiz.com/aucd/issues/alert/?alertid=29067511
Very recently, the “Safe Chemicals Act” was introduced by senators Frank Lautenberg, Barbara Boxer, Amy Klobuchar, Charles Schumer and others to upgrade America’s antiquated system for managing chemical safety. This is in response to increasingly forceful warnings from the scientific and medical
communities that common chemicals in household products are linked to diseases such as cancer, learning
disabilities and infertility.
From an autism standpoint, Lee Grossman, Autism Society President and CEO states that, “Thousands of unchecked toxins in the American marketplace are highly detrimental to the 1.5 million Americans living with autism today because many have immune deficiencies that, when exposed to certain substances, complicate already existing health issues.”
The Senate’s Safe Chemicals Act builds on momentum from 18 states that have already passed laws to address health hazards from chemicals and numerous corporate policies of major American companies restricting toxic chemicals, including Staples, SC Johnson, Wal-Mart and Kaiser Permanente. Those states are Wyoming, Nevada, Utah, Colorado, Arizona, New Mexico, Nebraska, Kansas, Oklahoma, Missouri, Arkansas, Louisiana, Alabama, West Virginia, Virginia, North
Carolina and Indiana.
The Safe Chemicals Act would overhaul the failing 35-year-old Toxic Substances Control Act (TSCA). Enacted in 1976, TSCA presumed that chemicals should be considered innocent until proven guilty, a sharp departure from the approach taken with pharmaceuticals and pesticides. Since then, that presumption has been proven faulty and dangerous, as numerous scientific studies have proven that many common chemicals can cause or exacerbate chronic diseases and can be toxic even at low doses.
Specifically, the new Safe Chemicals Act would:
• Require EPA to identify and restrict the “worst of the worst” chemicals, those that persist and build up in the food chain;
• Require basic health and safety information for all chemicals as a condition for entering or remaining on the market;
• Reduce the burden of toxic chemical exposures on people of color and low-income and indigenous communities;
• Upgrade scientific methods for testing and evaluating chemicals to reflect best practices called for by the National Academy of Sciences; and
• Generally provide EPA with the tools and resources it needs to identify and address chemicals posing health and environmental concerns.
If you want to “go green” in buying cleaners, be aware that specific claims such as chlorine-free, fragrance free, and phosphate-free are more meaningful than general claims such as “organic” and
“natural." Look for certification from credible third parties such as Cradle to Cradle, the EPA’s Design for the Environment Program, or Green Seal.
It’s about time this issue is addressed legislatively, but we don’t have to wait to act as individuals. Ridding toxic chemicals from our homes and yards is an empowering way to make our world safer for our children with autism.
The Journal of Pediatrics has just released the results of a study that
implemented a screening questionnaire for over 10,000 infants and reportedly was
able to identify early signs of autism and other developmental disorders in children as young
as 12-months old. The CSBS DP Infant-Toddler questionnaire, which takes only 5 minutes to complete,
asks parents a range of questions that help identify key risk factors. In the study, thirteen percent of the children who took the test fell into the abnormal range.
The 24-question test is said to be around 75% accurate, offering an
efficient and easy way for parents, doctors and caregivers to detect autism at
an early age. According to the CDC, most children with autism are not diagnosed
until the age of 5, so this test represents a significant advancement in early
screening methodologies. Originally developed in 2002, the test was not geared
specifically for autism, but since the test covers many of its core
characteristics, it is considered a new and effective way of identifying the
disorder in younger children.
Some of the questions include:
Does your child smile or laugh while looking at you?
Does your child point to objects?
Does your child use sounds or words to get attention or help?
When you call your child’s name, does he/she respond by looking or turning toward you?
While an abnormal test result will not necessarily indicate a definitive
autism diagnosis, it will help parents and doctors better monitor a child’s
progress and get a head-start on early intervention programs should a full-fledge autism
diagnosis eventually emerge.
This is very important because although there are many unknowns about autism,
the one thing therapists, researchers and doctors all agree on is that the
earlier the intervention and therapy, the better chance a child will have later in life.
