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Articles | Autism Key
 

 
 

Autism Awareness Event Recreates Sensory Challenges

A wonderful story has been reported out of Kentucky where a mother of twins with autism created an event for neurotypical children at her sons’ school to experience what it’s like to have autism. During Cumberland Trace Elementary School’s Autism Awareness Day, organizers manned five different sensory stations designed to let children experience first-hand the challenges children with autism face every day.

At the touch sensory booth, a volunteer gave students sleeves made of coarse burlap to wear for a few minutes as she explained to them that some children with autism have a distorted sense of touch. When they put on the burlap cloth, students complained that it was rough and itchy.

“Some children deal with that 24 hours a day,” she told students. “Would you want to wear this all the time? This is what they have to deal with every day.”

“Kids that have autism think differently than we do. Their brain is wired a little differently,” concluded a fifth-grader. “To us, our clothes feel soft and comfortable, but to them, their clothes might feel scratchy.”

At another station, children were put in pairs and asked to hold a conversation while one of them listened to a cassette player. They soon realized how hard it is for the child with autism to concentrate when background noise overwhelms them.

In order to demonstrate the warped sense of smell many children on the autism spectrum experience, the children were given a mixture of garlic and peppermint to inhale.

The station designed to replicate sensitivity to light involved students closing their eyes for 15 seconds, then opening them without blinking for 10 seconds. Many children couldn’t keep their eyes open and other eyes were running with water. They learned that this is what their peers with autism may experience every time they enter a room with bright lights.

Children were given extremely sour candy at the taste station. While some liked it, others couldn’t abide it. “It was very sweet and it made my mouth feel really weird,” reported a second-grader before concluding, “I can see that they taste things differently than us.”

The conclusions the children themselves drew are the most touching element of this report. Obviously, curriculum that engages the senses is more powerful than any lecture about autism. Inherently, this event is also a compelling method of reducing bullying of children with autism and would be an excellent component to anti-bullying programs in schools.

I can imagine this same event as part of an early PTA meeting in which a guest autism speaker addresses parents about autism inclusion programs within their schools, after which the parents visit the sensory tables. Engendering empathy and allaying the fears and misconceptions of parents of neurotypical children would help them send positive messages to their children about their classmates with autism and create a more warm, supportive school atmosphere.

And then my mind immediately conjures a bevy of teachers and administrators I’ve had the displeasure of encountering who would do well to make a trip to those tables themselves.

I love this story of one mother’s inspiration generating this wonderful event and I’m glad that her school rallied behind her idea. Creative methods of expanding awareness about autism give real meaning to Autism Awareness Month.

Autism Speaks Announces the Ten Best Cities for Autism

As part of Autism Awareness Month, Autism Speaks has released its findings from an online survey identifying the most livable cities for autism. These cities were recognized by respondents for best availability of services and resources, including educational, recreational and medical offerings.

The cities, in no particular order are New York, Los Angeles, Chicago, Cleveland, Philadelphia, Boston, Northern New Jersey, Minneapolis/St. Paul, Seattle and Milwaukee.

The worst overall places included Texas, Virginia, Tennessee, Florida, Michigan and ironically, Ohio and California, despite the high ratings for both Cleveland and Los Angeles.

Surveys came from 848 respondents and revealed that seventy-four percent were generally unhappy with the availability of services for autism where they lived, while 26% said they were generally happy.

Among those unhappy with where they live, areas of sharp grievances were travel time necessary to access services and resources and limited access to medical care. Half the survey takers were unhappy with their child’s educational services and most telling, ninety percent of all respondents reported no access to crucial respite care.

In contrast, satisfied respondents report good access to medical care and services that were proximate to their homes. Ninety-five percent were happy with their child’s educational experience. Yet seventy five percent of this group didn’t have access to respite care either. Supportive workplaces were a strong element of satisfaction and fifty-five percent of the happy group said their employers had family-friendly policies.

Before anyone starts packing their bags to move to Seattle, I have to say that I believe the “happy” respondents from Seattle are likely reporting from the upper ranks of the income scale. The public school system here is incessantly grappling with mismanagement and proves treacherous for children with autism. Special education teachers have zero required training in autism and it’s the luck of the draw whether an instructor will help or harm your child. All the experts in autism I encountered exhorted me to move to the suburbs with their far superior schools, but that was a financial impossibility for me. 

Every service I ever tried to access required languishing on a waiting list until I’d forgotten I’d ever signed up.

And the Department of Developmental Disabilities denied me respite care because my son’s IQ was too high. I finally petitioned the governor and received nineteen hours a month in respite care, but the provider was untrained and called the fire department when my son had an anxiety attack, a possibility I had copiously prepared her to deal with. 

Since my sons are now teens, it may be easier for parents of young children to access services now than it was for me. But I can currently attest to the school system’s lamentable state, the children’s hospital lack of special protocols for their patients with autism and the dearth of respite care. 

Microsoft is one of the region’s major employers and they are known for excellence in taking care of their employees who have children on the autism spectrum and they help give the city its rosy glow. 

Also, 848 respondents is not a huge pool. Still, interesting facts can be drawn from this survey as to what defines a strong community for autism support and regions where the most work remains to be done. Alarmingly, on the low end of the scale, Florida and Tennessee still allow corporal punishment, which paired with poor autism services, is truly frightening.

Clearly, major population centers comprise ten out of ten places on the list and the overarching grievance amongst everyone is lack of respite care. 

Again, I am aware of the many challenges still facing us and I hope this special month represents a real opportunity for meaningful changes to make all our of communities more livable for families contending with autism.

The Dangers and Pitfalls of Defining Autism

April is host to Autism Awareness Month as well as the fourth annual Autism Awareness Day (April 2nd). It is a time when concentrated efforts are made by both the media and individuals around the world to educate and help people to understand the statistics and the disorder itself.

Under the surface, there is debate within the autism community as to how autism is best defined. Is “disorder” the right word? Some doctors still refer to it as a “disease.” 

Also, do we use the term “people with autism” or are they “autistics?”

To some, this seems rather trivial but you have to understand, one wrong word can change how an entire world views 1% of the world’s population (autism is now diagnosed at 1 in 110 children according to the CDC). Will we see those with autism as a little different or as a defective person to lock away and institutionalize?

Here are a few points to consider, which should help clear things up a bit.

Autism is not a disease, even if a doctor calls it that. Autism is a disorder, as defined by its very name: “autism spectrum disorder.” The term disorder is actually even more appropriate when you consider what may be happening inside the brain of a person with autism.

There are some people that feel disorder is still too negative of a term when they simply view their loved ones as being “different.” However, there is also a danger in “normalizing” the condition too much.

No insurance agency in the world will help cover costs for being “different” and no government agency in the world will help to support someone who is “different.” There is no therapy available for it and there are no specially trained teachers for it. “Different” is great for you and me, but our loved ones truly are just a little more than that.

When I asked around about the difference between a “person with autism” and an “autistic,” I was met with arguments for and against each. They are broken down like this:

Person with Autism

Pros: This is thought to put the person first and the disorder second. The person is what is important — they are who they are. They have a disorder and therefore, it’s not the primary focus. 

Cons:
Autism isn’t just something that they have, it’s a part of who they are. It affects how they perceive the world and others and it gives them unique insights into everything around us that most of us would never be able to imagine. Autism is as much a part of them as their eye color, their shoe size or the shape of their face. 

Autistic

Pros: It is considered just another term, such as diabetic, American or brunette. It’s just a word that helps us to refer to a person in a certain context. Also, as previously mentioned, some people see it as a way to demonstrate that autism is a part of who they are. Without autism, they wouldn’t be who they are and therefore, the term “autistic” is very appropriate.

Cons:
This puts far too much emphasis on the disorder. A child is a child. A person is a person. They’re not a disorder. Autistic can be viewed as another word for autism and therefore it’s as if you’re talking to a disorder rather than the person who has it.

As you can see, labels can be a very tricky and they’re not something to be taken lightly. Some people treat these differing definitions extremely seriously and even get very upset if you use the wrong term in front of them.

My advice is to learn about autism, learn about how it affects people and then learn about those people because they are all far more unique than the methods we use to define them.

James Durbin Upsets Jackson Family with Pepsi Comment

Courtesy: Fox

A seemingly harmless and unscripted exchange between American Idol contestant James Durbin and host Ryan Seacrest has touched off a controversy involving Michael Jackson’s family. 

According to TMZ, the Jackson family, including Michael’s father Joe, is upset at Durbin’s off-the-cuff remark on Wednesday evening when he stated, “I have a lot of hairspray in my hair to keep it from jumping around — so much so, the one thing I was worried about was having a ‘Pepsi moment.’” 

Durbin made the comment shortly after his performance, which involved a pyrotechnic effect that included a piano being set ablaze behind him. Durbin’s remark was an apparent reference to Michael Jackson’s infamous incident in 1984 when his hair caught on fire while filming a Pepsi commercial.

There are several issues I have with Jackson’s team jumping all over Durbin and Fox for the comment.

For starters, James was merely referencing a well-known incident that is a part of pop culture history and showed no disrespect to Michael Jackson or his family whatsoever. Also, it appears as if the Jackson reps dialed up TMZ to protest the remarks, clearly aware that doing so would make headlines and draw attention back to the ongoing Michael Jackson saga. If true, then that is really an unfortunate thing to have done.

Additionally, it can be assumed that the Jackson team is unaware of James Durbin’s Asperger’s Syndrome, which is a high-functioning form of autism. A common characteristic of those with Asperger’s is the lack of a "filter," meaning things are often said and done without the full realization of their consequences — another reason to back off and give James a break.

While we certainly feel for the Jackson family and the pain they have endured as a result of their loss, picking on a 22-year-old with Asperger’s for an unscripted comment is clearly the wrong place to be venting their grief and anger.

James has overcome the death of a father, Tourette’s Syndrome and Asperger’s, and is currently participating in a grueling competition that he has worked so hard to be involved in. The last thing he needs is the unnecessary guilt and burden of inadvertently offending a grieving family.


Music Therapy Benefits Individuals with Autism

istockphoto.com/alwyncooper

In my ongoing postings of alternative therapies to enhance the lives of children with autism, I would be remiss if I didn’t include music therapy.

Everyone knows that music is a universal language and for children on the autism spectrum who have barriers to communication and social interaction, music is especially well-suited to their needs. Because it captures and helps maintain attention, music serves as a great motivator and helps reinforce desired responses, assisting a child to reduce negative and/or self-stimulatory responses and increase participation in socially accepted ways.

In non-verbal children, music therapy allows them to communicate without language, fostering creative self-expression. Because music is processed in both hemispheres of the brain, it can stimulate cognitive functioning and may lead to the development of verbal communication, speech and language skills.

The rhythmic component of music is an organizing force in the sensory systems of individuals diagnosed with autism. As a result, auditory processing and other sensory-motor, perceptual/motor, gross and fine motor skills can be successfully addressed through music therapy.

Listening to music, taking turns and playing together all impart social skills in a safe and fun environment. In my personal experience, social skill classes never worked for my son because they weren’t organized around a shared activity. Having children come together around a mutual interest to help enhance social skills would have been a much better route.

I never formally engaged a music therapist for my son, but music has been a lifeline for him and the surest way to bring him comfort. 

When he was a toddler and a meltdown began, I once grabbed a big drum and set it in front of him. He started hitting it instead of himself and his eyes grew wide with excitement and joy that he was making music. Soon after, it became my go-to strategy. 

In elementary school, he tumbled to the fact that is he is a synesthete — a person who sees music as colors. He started drawing music as he listened to it, giving expression to the colors and textures of the tones and feeling proud that autism had given him that ability. In middle school, he used music to initiate conversations with other kids. And now at the age of fifteen, his vast knowledge of music has landed him a gig writing album reviews for a local radio station.

However you incorporate music into your child’s life, you may soon realize that you are bringing healing and comfort and possibly planting seeds for future endeavors.

Light It Up Blue Kicks Off Autism Awareness Month

April is Autism Awareness Month and an ambitious effort has been launched by Autism Speaks for a second straight year through its ‘Light It Up Blue’ campaign. On April 1st and 2nd, buildings and well-known landmarks in over 120 cities across the United States and around the world will shine blue lights at night to raise awareness for autism. Additionally, people have been encouraged to wear blue clothing and apparel on both days as a show of their support. The Home Depot is even selling blue LED lights that homeowners can use to light up their homes.

Some notable landmarks that will be participating in the Light It Up Blue campaign include the Empire State Building in New York City, the Rock and Roll Hall of Fame in Ohio, the CN Tower in Toronto the Sydney Opera House in Australia and the Christ the Redeemer statue in Rio de Janeiro, Brazil.

It’s nice to see Autism Speaks using its notoriety to create such a massive awareness campaign. However, let’s hope it translates into meaningful change that will benefit the millions of families directly affected by autism and not just something that makes everyone feel good for a couple of days.

Based on the buzz that’s been created thus far, it looks like ‘Light It Up Blue’ will go a long way in drawing much needed awareness and attention to autism in the month of April.

Making Autism Awareness Month Count

On April 1 and 2, blue lights will be shining in cities all around the world to help promote autism awareness. In Seattle, The Children’s Museum will be open early exclusively to children with autism, who will be charged a reduced admission fee. People will walk, run, and attend banquets in honor of Autism Awareness Month. 

But will these things really matter or will they be window dressing that covers the hard work that actually remains to be done?

I know I can’t address the things that most concern me alone. My twin sons, who are teens, are both on the autism spectrum. One of them was hospitalized for two months and the children’s hospital where he stayed was woefully unskilled at contending with his condition. This hospital opened a fancy new autism center down the street, but there’s a firewall between the two departments and zero protocols exist for managing a patient who also happens to have autism. Many mistakes were made that created an experience more harrowing and traumatic than it had to be.

School systems across the nation vary wildly in their commitment to their students with autism. Lack of training, fear and ignorance keep progress at bay, inhibiting our legal and moral obligation to provide all children an appropriate public education. Then there’s the tragedy of bullying, rendering our schools unsafe on many levels.

Haunted by the recent police events in which teens and young adults face disaster and even death because officers are untrained in autism, I fear for my sons’ safety should one of them happen to get stopped.

And what about their futures? Where and how are they going to live if something happens to me? They are without support systems in the community and have no extended family.

I’ve lodged complaints, called officials, gone to war over and over again with the school system and am left feeling like David squaring off against Goliath without a slingshot in sight.

Autism Awareness Month makes me most aware of the need to build coalitions around common causes because this is the only way that vast bureaucracies like hospitals, law enforcement and school systems will feel compelled to change. 

My nature is to be a loner, but my passion around autism issues makes me aware that I need to find like-minded people and get to work to help our children with autism. Don’t get me wrong, I’ll enjoy those blue lights and the attention they will bring, but I will also focus like a laser to make sure they are not just for show and actually mean something that impacts the lives of those affected by autism.

Facebook Proves Helpful for Teens with Autism

Facebook has become the cyberspace version of another era’s malt shop – the place where teens hang out after school and socialize. But lately, there’s been a great deal of media attention about its dangers. 

In addition to those concerns, there are other pitfalls as well, including teens without many friends feeling depressed, suffering from having to bear witness to peers who are more popular, complete with photo albums of the many fun and exciting social activities that are being missed.

Even for socially well adjusted teens, Facebook can breed dangerous cyberbullying and gossip that gets carried over into their school lives. Many teen suicides as of late begin with hurtful words online that spread virally through Facebook. And psychologists warn that Facebook is cultivating a craving for instant gratification and shorter attention spans in our youth.

Given all these concerns, one would naturally feel wary for the teen with autism trying to navigate the world of Facebook. But Facebook can actually be very useful for such teens. Photos and names listed explicitly help them to track faces at school. Background information about friends is available and easy-to-reference and exchanges on Facebook can help them plan their next social exchange.

The teen with autism using Facebook doesn’t have to worry if they’re standing too close to someone or not making enough eye contact. The social cues that are so difficult in person are eliminated as is the concomitant anxiety and peril of trying to successfully make conversation. And as opposed to real life, teens with autism can control how they want to come across to others, then try to implement that in person.

Facebook can be used as social crib notes for those with autism, providing topics of conversation to use in real life and the ability to study how neurotypical teens interact. It also makes it easier for them to find others who share their special and often obscure interest. Additionally, they can showcase their strengths and abilities, attracting positive attention and possible internships or employment. 

Of course, too much expsoure isn’t healthy either and teens should not be totally consumed by the world of Facebook. They would also need to be aware of online predators and the importance of not divulging too much personal information. But with proper guidance and oversight, Facebook does offer unique advantages for teens on the autism spectrum.

Autism, Allergies and Gastrointestinal Disorders: A Return from the Brink

istockphoto.com/Eraxion

April 1st ushers in Autism Awareness Month and there is an excellent conference that kicks off in Dartmouth, Massachusetts to start the month. “When the Belly is the Beast: How Intestinal Health Impacts Brain and Behavior,” is a symposium dedicated to exploring nutritional and biomedical approaches to treating autism. In addition to speakers on gastrointestinal health, experts will address legal resources for parents of children with autism and how to access services in the community. The event is sponsored by the Gottschall Autism Center, named after Elaine Gottschall, famed research and cell biologist who wrote "Breaking the Vicious Cycle: Intestinal Health through Diet."

Gottschall pioneered the Specific Carbohydrate Diet (SCD), a grain, lactose and sugar-free diet designed to eliminate hard-to-digest complex carbohydrates and prevent harmful microbes in the intestinal tract from causing damage. Many children on the autism spectrum have underlying gastrointestinal issues that manifest as bloating, pain and diarrhea, as well as poor sleep, tantrums, repetitive behavior and crying at night. Because of their communication issues, children often express their physical pain in behaviors.

My son with autism suffered terribly for years because of his undiagnosed gastrointestinal problems. He was twice hospitalized for anxiety so severe, it manifested as intrusive thoughts that were long speculated to be psychosis. Ominous warnings of major mental illness were forecast and he was placed on adult levels of anti-depressants and anti-anxiety medications. 

At the age of thirteen, his problems culminated in a diagnosis of Crohn’s Disease, an auto-immune disorder in which the gut is utterly diseased and nutrients cannot be absorbed by the body. Chronic in nature and life threatening, the shock of his new diagnosis left me beside myself with fear.

Hospitalized for six weeks during which his weight fell to sixty four pounds, he finally went home with a stomach tube surgically implanted in his belly through which formula was pumped, his only source of nutrition. I had been terribly wary of it, because a naturopath had speculated he was allergic to milk, but the doctors dismissed my concern and refused to consider diet as any component of the problem or solution. 

Instead, they proffered Remicade, a chemotherapy agent that shuts down the immune system and was to be administered in two-hour infusions at the hospital twice a month for the rest of his life. 

I felt physically ill at this prospect and quickly researched the drug, which turns out to carry a black box warning for causing lymphoma in adolescents, my son’s age group. A bevy of other harrowing side-effects including onset of rheumatoid arthritis convinced me that I would not consent to this treatment plan. Not coincidentally, it is also one of the top four profit grossing drugs in the entire world. It would cost two thousand dollars per infusion with the add-on of it having to be rendered in a clinical setting.

Defying the doctors was a dangerous course, as they wanted me to be declared an unfit mother. Through a series of miraculous events that I liken to finding Harriet Tubman’s underground railroad to freedom, I was led to a doctor in a neighboring state who specialized in autism, environmental medicine and immunology. 

The first thing he did was give my son a food allergy test. It turns out that my child was allergic to almost everything that constituted his diet, including the milk being pumped into his system eighteen hours a day. And those killer doses of psychiatric drugs were further upsetting his stomach. 

The doctor told me to slowly wean my son off the psychiatric drugs, supplanting them with oxytocin and nutritional doses of Lithium. We began the SCD diet and my son detoxed for a solid month, creating quite an ordeal. But after that, he became calmer and clearer and started to actually enjoy eating, as opposed to dreading it. With two ongoing prescriptions for his gut, low dose naltrexone to regulate his immune system, vitamins, supplements and diet, my son has gained thirty five pounds and is the healthiest he has ever been in his entire life. The Crohn’s disease has been in remission for over a year. 

Sometimes, diet is disparaged as an expensive fad, but for us, it’s been a Godsend. My son’s SCD diet was very daunting initially and represented a paradigm shift in the way we approached food. But now, it’s hard to believe we ever lived any other way. 

Fortunately, there is a great deal of online support and information available about the SCD diet and if anyone wants help, I would be happy to share what I have discovered in the way of websites, recipes and food sources. 

I wish my son had that food allergy test years ago as it would have spared him so much pain and grief. 

Consider having your child with autism tested for food allergies. You may discover no allergies to support introducing a casein-free, gluten-free diet or other food restrictions. Then you have the relief of a rule-out. But if your child is found to have allergies, adjusting his or her diet can vastly improve the quality of life — and may even save it.

American Idol Contestant James Durbin Mocked on YouTube

An upsetting video has been discovered on YouTube, mocking James Durbin and his Tourette’s Syndrome. The video, which was uploaded on March 24, 2011 by an individual using the handle "jordans704," shows a 54-second clip from this past Thursday’s American Idol results show in which James Durbin can be seen making unusual facial expressions during an announcement by host Ryan Seacrest. In the video, a female and a male can both be heard laughing and chuckling in the background at Durbin’s expense. The clip shows close-ups of Durbin’s facial tics and is replayed several times, during which point he is repeatedly laughed at.

The video’s title is "AMERICAN IDOL JAMES DURBIN TURRETS FACES GOING NUTS!," with a description of: "hAD TO PUT THIS UP ON YOUTUBE IF ANYONE DIDNT ALREADY, KID CAN SING BUT MAN CAN HIS TURRETS MOVE!"

When I came across this video, I became extremely outraged as it is a perfect example of the cruelty and teasing that millions of people with special needs have to endure on a daily basis. 

Durbin, who has been diagnosed with both Tourette’s and Asperger’s Syndromes, has himself said in multiple interviews that he was severely teased and bullied while growing up and this video clip is just a small taste of what he had to deal with. We also wrote another story last month on Durbin and a visitor to our site posted the following comment:

I am from Santa Cruz, California. I know several people who know James, or who have kids who went to school with James. As the story goes, James was bullied horribly for his afflictions. I am not sure if he is on medication or what his deal is. But I know that the tourettes (sic) and Aspergers (sic) (which was not even named until 1994) were very visable (sic) in James while he was in school. I have heard stories from too many people.

James Durbin’s success on American Idol has created a tremendous amount of awareness for both Tourette’s and Asperger’s and he is an inspiring example of someone who has overcome severe challenges to accomplish great things. Unfortunately, as we can see below, he has also exposed the ugliness, cruelty and ignorance that still exist in our society when it comes to those with special needs.

UPDATE: 03/26/2011 @ 8:15 PM EDT — We are happy to report that the video in question has been removed by the YouTube user, presumably in response to the ovewhelming replies he/she received as a result of our article.

Thank you to all of you who posted their passionate feedback on “jordans704″ YouTube page to let him/her know that bullying, teasing and harrassment of those with special needs will not be tolerated, regardless of who that person may be.

UPDATE: 04/08/2011 — The following message was posted on the wall of the YouTube account responsible for uploading the video mentioned in this story:
“This is nicks mother, the video was taken down. My son did not post it. His Uncle posted it and I took it down immediately. My son who is 10 does not make fun of ANYONE. i AM SORRY FOR THE hurt this has caused.”

 
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