An interesting article has been posted over at ShiftJournal.com by Amy Sequenzia, who has described herself as a non-speaking autistic and self advocate. In her post entitled "Non-speaking, ‘low-functioning,’" Amy takes issue with the stereotypes and labels that are often assigned to those with autism, particularly those who do not have the ability to speak. Her article begins as follows:
"I am autistic, non-speaking. I am also labeled “low-functioning”. This label is a pre-judgment based on what I cannot do. It makes people look at me with pity instead of trying to get to know me, listen to my ideas.
I am a self-advocate and I can type my thoughts. But, at the moment I show up with my communication device and an aide, my credibility, in the eyes of most neurotypical people, is diminished…"
The term "low-functioning" has become such a common part of the autism community’s vocabulary, it’s safe to say that only a handful have
given thought to how its application can affect others. But as Amy demonstrates, word choice does matter and can often profoundly affect the very individuals we are professing to help.
I recall the first time another parent corrected me when I used the term "autistic child" when describing a little boy with autism. This mother pointed out that the proper description should be "a child with autism," because the person should always come before the disorder.
I remember at the time thinking this was just an overly-sensitive, politically correct observation. However, as the years have gone by, I’ve learned that it’s important how we describe individuals with autism because ultimately, those definitions are what shape the perceptions of the general public. And once stereotypes set in, they are almost impossible to undo.
Case in point, Amy continues with the following:
"All the labels given to us only help to make myths seem like the reality. By classifying non-speaking autistic as low-functioning, one is lowering expectations for the autistic individual. He or she is not given a chance to express him/herself and maybe show hidden abilities."
I think many of us have much to learn from Amy and others like her. Those with autism are not some pitiable statistics to be discounted or marginalized, but rather brilliant, beautiful individuals who just happen to experience the world a little differently than most.
To read the entire article by Amy Sequenzia, click
In what appears to be an increasing trend in both movies and television, characters with autism (or autistic traits) have become a focal point of
interest for both writers and producers. As we mentioned last week, a new Tom Hanks movie is set for release later this month, revolving around the 9/11 attacks and a young boy with autism. In "Extremely Loud and Incredibly Close," nine-year-old Oskar Schell, who has high-functioning autism, must come to grips after his father (Hanks) is killed in the World Trade Center attacks. The discovery of a mysterious key by Schell causes him to embark on a remarkable journey of healing and discovery.
Coincidentally enough (or not), Fox has announced a new series that will also revolve around a 9/11 widower and a child with autism.
Beginning January 25, 2012, "Touch" will follow Martin Bohm (Kiefer Sutherland) as he struggles to connect with his non-verbal eleven-year-old son, Jake. Trapped in his own world and inability to speak, Jake keeps himself busy by disassembling phone parts and other repetitive activities, all while seeing the world in a unique way.
The show kicks into gear when Bohm learns that his son possesses incredible abilities and gifts involving numbers, all of which connect with people and events around the world.
After watching the preview, I was incredibly moved and am excited at the potential the show has to offer. As a huge fan of "Lost" and a parent of a child with autism, it looks to be right up my alley.
I did find it interesting that although Jake clearly displays characteristics of autism (non-verbal, fascination with numbers, etc.) I could not find anywhere in the Fox promotional info where autism is mentioned. This was also the case with the Hanks movie and no doubt an intentional move by producers and executives of both projects. My guess for this is the desire to avoid creating stereotypes that can result from casting these individuals with autism in a particular way.
I’m really looking forward to watching "Touch" and have marked my calendar for the 25th. I’ve watched the trailer below three times already and have yet to keep a dry eye.
Several news stories have emerged in the past few days, underscoring the troubling and persistent issue of bullying regularly endured by those with autism and other special needs.
In Kansas, 22-year-old AJ Alexander was attacked outside of a Starbucks, leaving him shaken up and with a black eye. The unprovoked assault occurred as Alexander was listening to music and minding his own business. His father says the suspect emerged out of nowhere and attacked his son and cannot say for certain if Alexander, who has autism, was singled out or if the attack was random.
Additionally, in Ohio, 20-year-old Braxton Devault suffered a beating at a bus stop as he waited to be transported to his vocational school. Devault suffers from both autism and epilepsy and believes he blacked out and had a seizure during the attack. His mother is now pleading for the bully to be expelled from school.
As troubling as these incidents may be, they are only the tip of the iceberg and a microcosm of what plays out around the country on a daily basis. Harassment, teasing, bullying and physical attacks are all-too-common for those with autism, particularly those who are high functioning.
Despite greater awareness, bullying remains problematic and while much has been done to address the issue, there are additional steps that need to be taken to ensure children with special needs are protected.
Since parents cannot be with their kids all of the time, advocacy needs to begin with fellow students and neurotypical peers.
As we reported
last year, a heartening story involved a fourth grader who launched an anti-bullying campaign after witnessing his fellow classmate with autism picked on during recess. The story was covered nationally and the boy’s efforts were lauded as an excellent example for other students around the country to follow.
It would be nice to see some follow through on this initiative on a larger scale to ensure we’re doing all we can to protect children and young adults with autism from the kinds of incidents that have occurred during the last few days.
Authorities have announced that they have apprehended 24-year-old Harry Burkhart for a string of arson fires that have left Los Angeles-area residents on edge for the past four days. In total, 53 fires have been set in Hollywood, California and surrounding areas, causing more than $3 million in damage. A Los Angeles County police spokesperson said they "feel good that we’ve got the right guy."
If proven true, there is a possibility that the mainstream media will incessantly fixate on his condition in an attempt to correlate it to his alleged crimes. Hopefully, that’s not the case but if an autism diagnosis is confirmed, it’s very likely to occur.
The truth is, we rarely hear about incidents involving individuals with autism committing crimes. That’s not to say they don’t occur, but past studies have actually shown that those with autism spectrum disorders are no more likely to commit crimes than their neurotypical counterparts (Barnhill, 2007; Griffith, 10 May 2006). Hopefully, the mainstream media will not overlook these facts when reporting on Burkhart’s condition.
Another area of concern is because of the broad definition we now have for autism, a new trend might be emerging involving criminal defense attorneys claiming their clients have "autism" in an attempt to build a legal defense case. In the process of doing so, reports of crimes committed by individuals with the disorder will be on the rise, creating false stereotypes in the process.
The autism community is finally starting to emerge from the "Rain Man" shadow that was cast nearly 25 years ago. The last thing we now need is the new perception that individuals with autism are computer hackers, arsonists and violent criminals
A new film starring Tom Hanks and Sandra Bullock opens nationwide later this month and addresses several emotional issues, including the 9/11 terrorist attacks and autism. "Extremely Loud and Incredibly Close," based on the 2006 novel of the same name, tells the story of nine-year-old Oskar Schell who loses his father in the World Trade Center attacks and must come to grips with his loss. While not officially acknowledged in the novel or film, Schell is suspected to have Asperger’s Syndrome and uses a mysterious key left behind by his father to embark on an emotional and healing journey throughout New York City. Schell’s autistic traits are clearly displayed throughout the film, which include an unusual tone and rhythm of speech, social difficulties and sensory issues.
The film has been met with mixed reviews, receiving a mediocre rating on Rotten Tomatoes, but is also being heralded by some as a triumph.
Perhaps the most disturbing component of this film’s release is the blatant discrimination against children on the autism spectrum, as seen in reviews and comments posted around the web. Based on some of these online rants, it appears that many moviegoers and critics take issue with the way children with autism behave and speak. In an IMDB review,
one user from New Zealand posted the following:
“Top notch talents put themselves at the service of this jarring tale lead by Thomas Horn a young actor, talented I’m sure, but here, he is utterly unpleasant. A precious child with a jarring voice that should be stopped, now!”
"Newcomer Thomas Horn, the 13-year-old star who was cast after the filmmakers saw him on a "Jeopardy!" kids episode, is a mixed bag, holding his own among the adult actors but, through no fault of his own, forced to behave with excessive shrillness much of the time.
That’s because his character, Oskar Schell, may or may not have Asperger’s syndrome, a mild form of autism (his medical tests, we’re told, were inconclusive). You make allowances in life for people you encounter with autism, but spending two hours with a fictional character possessing autistic qualities can be grating."
Mr. Germain and others have exposed what we as parents contend with on a regular basis, which is the overt discrimination and contempt towards our children by the general public at large. Had Germain made such statements about a movie character’s race or sexual orientation, I’m sure we’d be hearing a lot more outcry. But unfortunately, other than a few Web sites and autism message boards, there has been little fanfare made about the AP writer’s sentiments.
Perhaps Germain "makes allowances" for those with autism in real life, but I refuse to do the same for his ignorance and asinine comments.
As the holiday travel season comes to a close, many parents of children with autism are relieved that it’s over. As we’ve documented in the past, traveling with a child with autism can be a major challenge, with airports and airplanes providing a multitude of sensory challenges for those with special needs. Adding to these issues for parents is the burden of hauling heavy bags around the airport, all while simultaneously tending to their children.
What many may not be aware of is the emergence of luggage forwarding services in recent years. These are provided by companies that offer convenient door-to-door luggage shipping services for a fee. Companies will pick up bags at your home or office and ship them to just about any destination of choice. Your bags will be there upon arrival and the process is then repeated for the return trip home, eliminating the issue of hauling heavy bags around during family vacations or business trips. Prices vary based on destination, bag size/weight and urgency of delivery.
This is definitely a luxury service and not for everyone, but with rising baggage fees that are being implemented by airlines, parents of children with autism and other special needs may want to check out some of the companies below to see if this type of service is a good fit for them.
Luggage Free – Headquartered in New York City and is one of the more established luggage shipping companies around. Utilizes a multitude of carriers to get the best rates, which average between $2-$4 per pound for 2 to 5 day deliveries. http://www.luggagefree.com 1-800-361-6871.
Luggage Ahead – New Jersey-based company that offers shipment on just about any item you may have, which includes wheelchairs, computers, golf clubs, bicycles, diving gear, surfboards and business items. Average cost is $75 (one way) for a 45 lb. bag. Offers an affiliate program for referrers. http://www.luggageahead.com 1-888-395-4410
Luggage Forward – One of the largest luggage shipping carriers around. In 2009, Luggage Forward acquired five other companies in a consolidation strategy to become a major player in the industry. Offers bag pickup by phone or online through an Automated Routing Control System. Average price is $99 (one way) for a 50 lb. bag. http://www.luggageforward.com
The Luggage Club – Offers a member area on its website, including a section for special needs travelers. Pricing averages around $109 (one way) for a 50 lb. bag. Targets both business and leisure travelers. http://www.theluggageclub.com
LugLess – Based in New York City, LugLess is one of the newer, but more competitively priced luggage shipping companies in the industry. Pricing averages around $39 (one way) for a standard carry on bag and $59 (one way) for a standard 50 lb. bag. http://www.lugless.com
We have some sad news to share, following up on a previous
story we wrote about last week. According to WCSC in South Carolina, Toby, the autism service dog who had been taken from a family’s front yard, has turned up dead in the same location.
Kelly Nolan, the mother of the child who the dog assisted, reported that Toby was found warm and lying dead in the front yard Sunday evening with blood coming out of his mouth. He was an American Bull Terrier and taken from the family’s home in Moncks Corner, a small town north of Charleston, South Carolina. The dog appeared to have blunt force trauma to its head.
Allie, the child who the dog belonged to, had very limited communication skills and relied heavily on the dog for companionship and often provided a
"voice" for her when she was upset or in danger. She was reported to be very distressed when the dog was initially taken and this latest development is absolutely heartbreaking.
Police say a white female with blonde hair driving a black Dodge Charger took the dog from the family’s yard on Tuesday. A motive has not been announced.
Although the family has reported that they do not want another dog because of the "heartache", I would still love to see the autism community rally behind this family and help them out.
If anyone has information or leads about this incident, please contact the Berkeley County Sheriff’s Department at 843-719-4234.
South Carolina brings us an upsetting story involving the theft of an autism service dog on Tuesday from a family’s front yard in Moncks Corner, a small town north of Charleston. Toby, an American Bull Terrier, was snatched by a white female with blonde hair after she stopped in front of the family’s home. The dog provided services to Allie Nolan, who has autism and is said to be taking the loss very hard.
Parents of the young girl have stated she has very limited communication skills and doesn’t know why Toby is gone. The dog often provided a
"voice" for her when she was upset or in danger. Witnesses say that the alleged thief was driving a black Dodge Charger when the dog was taken.
The optimist in me would like to believe that someone wouldn’t be so callous to knowingly steal a service dog from a little girl with special needs. However, these pets can cost upward of $20,000, so it’s possible there may have been a financial motive behind the incident. Hopefully, enough people will circulate this story in the media, pressuring the thief into doing the right thing and return the dog.
The family has said they will continue searching and leave Toby’s water bowl out and wait for him to come home. If you have any information on Toby, you can contact the Berkeley County Sheriff’s Department at 843-719-4234.
A reward is being offered for the dog’s safe return.
At the moment, the biggest story in all of professional sports has been the unprecedented play of NFL quarterback Tim Tebow. For those unaware, Tebow is currently the starting quarterback for the Denver Broncos and has led his team to an improbable string of victories over the last several months. After taking over an ineffective team that began the season with a 1-4 record, Tebow, with the help of his teammates, have managed to put together a 7-1 record and now have the Broncos in contention for a playoff berth.
The winning streak itself is not necessarily what’s captivating the nation’s attention, but rather how the winning is taking place and the circumstances
In what has turned into a scene from "Groundhog Day," Tebow has managed to orchestrate victories in near-miraculous fashion week after week, leaving many analysts, pundits and football fans perplexed as to how it’s happening. With six second-half comebacks in the last two months (3 of which occurring in overtime), Tebow has made a habit of making the impossible possible. This all comes from a player who was repeatedly told that he was not good enough to play in the NFL and would never be an effective quarterback in the league.
At this point, many might be wondering what connection Tim Tebow has with autism. The answer is, none that I am aware of. However, as a parent of a child with autism and a huge football fan, the events surrounding Tim Tebow have been nothing short of mesmerizing. And at a time when hope is scarce and obstacles are abundant for many families facing the disorder, it’s hard not to draw inspiration from the Tebow story. Much like the "underdog" status assigned to him throughout his life, those on the autism spectrum are accustomed to similar labels, often being told what they cannot do and what they will not be able to accomplish.
To fully appreciate the Tim Tebow phenomenon, it’s important to know his backstory as well.
In 1986, Pam Tebow conceived Tim while serving as a missionary in the Philippines and upon visiting a doctor, was told to "immediately" abort her baby if she wanted to preserve her own life. The doctor stated that she was not even carrying a baby at all, but rather a big clump of tumor and tissue.
As a person of strong conviction and faith, Pam refused to follow through with the abortion and despite an incredibly difficult pregnancy, gave birth to Tim. Because the placenta was not properly attached during pregnancy, Tebow was born extremely malnourished and consequently labeled a "miracle
baby." Even in the womb, Tebow had overcome incredible odds.
Like his parents, Tebow is an evangelical Christian and never shies away from sharing his faith when he is interviewed by the media.
Because of this faith, Tebow has become a lightening rod of controversy about what role religion should play within professional sports. Despite one’s own religious convictions, it’s impossible to deny that there is something special surrounding this young man and his story should provide a beacon of hope for anyone facing obstacles and challenges, particularly those within the autism community.
For anyone who has ever been told that their child will be institutionalized, will never be able to marry, will never speak, will never hold a regular job, will never have friends, will never be "normal," will never be able to drive a car and any other "never," they can take comfort in knowing that incredible odds are defied all the time, only if one is willing to stay positive and remain defiant in the face of conventional wisdom.
As Tebow stated in his most recent
press conference, “If you believe, unbelievable things can sometimes be possible.”
Daniel Tammet, Raun Kaufman, James Durbin, John E. Robison, and Jason McElwain are just a few faces of autism that are a testimony to this fact and proof that the impossible truly does become possible — not only with Tim Tebow, but those with autism as well.
With Christmas just a few weeks away, parents of children with autism may be in the familiar position of having difficulty in finding the right gift for their loved ones. In the current economic environment, this can be even more of a challenge for those who are on a tight budget. For those last-minute shoppers, I’ve outlined some products below that may serve as great gift ideas. The items vary in pricing, so there should be something for just about anyone on any type of budget.
Apple iPad – For many, this gift will be out-of-reach financially, but I feel it’s important to include because of the benefits it provides. The iPad has been heralded as a breakthrough device for children with autism, primarily for its downloadable applications, or ‘apps’ that have been developed to enhance communication for those with autism. If the iPad is out of your price range, consider the less expensive iPod Touch. eBay is a great spot to pick up an iPad at a discounted rate from what you typically would find in a retail store.
PRICE: $350-$450 (used) or $550 – $800 (new). iPod Touch: $100 – $250 (used) or $250 – $500 (new). Prices vary based on model, storage space and web connectivity options, so be sure to do your research.
Sensory Pea Pod – The sensory pea pod is an inflatable vinyl pod for children that creates a “cocoon-like” effect, calming and relaxing them in the process. The item is safe and comfortable and children particularly enjoy the gentle pressure that it exerts on all sides. Available in different sizes.
PRICE: $75.00 – $150.00 http://tinyurl.com/sensorypeapod
MeMoves™ – A multi-media presentation offered on DVD that helps a child’s auditory, visual, motor planning and sequencing and limbic parts of the brain. Organized into three categories; Joy, Focus and Calm, users select one of the 13 sequences on the DVD and follow along (imitate) the actions on the screen. PRICE: $59.95
Computer Games – It’s no secret that children with autism are drawn to video and computer games. The following selections from Different Roads to Learning will help apply your child’s love of video games into an interactive, positive learning experience. PRICE: $49.95 – $150.00 http://www.difflearn.com/category/computer_games
Grace – For those who already have an Apple device, the Grace app is a digital version of the Picture Exchange Communications System, a book that helps those unable to speak to build sentences from relevant images. The app starts with 400 images that were chosen by non-verbal people as communication starters. Categories include colors, food and drink, my body, and places. Grace allows the users to build their “photo vocabulary” by snapping their own photos to use within the app. PRICE: $38.00 http://www.graceapp.com
Weighted and Pressurized Vests – Vests that apply weight or pressure to the body have been shown to benefit some children with autism and help calm down a child, allowing them to better process information. These types of vests and clothing may also improve a child’s ability to concentrate. Generally, children who are easily distracted or hyperactive respond well to the additional weight or pressure the clothing provides. PRICE: $30 – $80.
Chewelry – Offered by Kid Companions, Chewelry functions as a chewable, wearable or attachable sensory tool for individuals with special needs. Items are discreet and age-appropriate alternatives to traditional oral motor and fidget toys.
PRICE: $8.00 – $20.00 http://kidcompanions.com
While we don’t officially “endorse” the above products or the companies that provide them, they are definitely worth checking out and will hopefully spur some unique gift ideas for you this holiday season. More important than any gift, however, this time of year should be focused on family, friends and our loved ones and hopefully, the stress of shopping and gift-giving should be eclipsed by the more important things that really matter and really last.
All information in this site is presented for support and educational purposes only. It is not intended to substitute for medical treatment or visiting a licensed medical physician. Visitors who desire to apply or use any information listed herein are urged to consult with licensed healthcare professionals first. All information is deemed reliable but its accuracy can't be guaranteed.
Once again, our nation has been rocked by another young adult conducting a murderous rampage that ends multiple lives, including his own. My heart sank when the shooter in the latest tragedy, Elliot Roger, was identified as having Asperger’s Syndrome (AS). Barely past Sandy Hook with Adam Lanza, and now this. Even with some news […]