I wear a set of keys on a chain around my neck. I don’t know what, exactly, these keys unlock, but I wear them in hope, and in memory.
After my grandmother passed away years ago, my grandfather invited the women of the family to view her jewelry box and select any items that we would like to have. Grief-stricken though he was, he remembered (and honored) his beloved’s wish that her items be shared with the family.
At first, the jewelry seemed to consist entirely of gold pieces; I only wear silver. But then, a glimmering caught my eye, a flash of silver from the back of a drawer. Instinctively, I reached in, pulling out a small pair of silver keys. As I held them in my hand, I was intrigued by the mystery of what they might unlock, and the symbolism I saw within them. No one could tell me what they unlocked, but I knew what they represented: a perfect match, as my grandparents had been. Instead of questioning my fascination, I put them on a chain, forming a necklace that I’d wear every day for years.
In college, I wore them in hopes that I, too, might find my ‘perfect match’. Now, I wear them along with my wedding rings, as a statement of a dream realized. They make me think of my grandparents, who have both since passed away. I remember how my grandparents accepted and loved
my brother Willie, who has autism.
My grandparents were born in a time when many people with special needs were institutionalized and shut away from the world. (At least one family member from my grandparents’ generation openly questioned my parents as to why they hadn’t institutionalized Willie.) Yet my grandparents chose to open their hearts and welcome my brother into our family. Yes, they had to work through fear and face down societal prejudice to do so. But what I’ll always remember is the look my grandfather would get whenever he’d talk about my brother. Pride, compassion, and love would fill every line on his face.
Willie was – is – an integral part of our family. He has different needs, a different diet, and a different communication style. In some ways, Willie’s need for support makes him vulnerable. But his strengths are what my grandparents chose to celebrate. For example, whenever we’d gather as a family for Thanksgiving or Christmas or Easter, my parents and grandparents would turn to Willie, inviting him to ask the blessing. And whenever Willie prays, I think of how beautiful it is to be led by him.
I am hoping against hope that we will continue to ‘unlock the mystery’ of autism, that we will continue to celebrate and empower individuals on the autism spectrum. Moreover, I hope that we will allow ourselves to be changed – to let our relationships with people on the autism spectrum transform our thinking. As a society, we have made great steps forward when it comes to inclusion and autism. Even so, we have a long way to travel on the road of acceptance.
Our work is not yet finished – not while family members still suggest the isolation and exclusion of institutions as a viable option. Not while school systems and Medicaid programs cut wages, programs, and benefits for individuals, teachers, and caregivers. Not while people with autism lack opportunities for meaningful work. Medical and technological advances move us closer to unlocking the mysteries of autism, but will our hearts and minds also swing open to welcome people with special needs?
Many people have asked me about the keys I wear; they sense a story behind the necklace. And whenever I share that story – the story of two people who loved each other and accepted their grandson – I think about how, in making these everyday choices, my grandparents changed the world.
I’ll be wearing my keys this April, in honor of Autism Awareness Month. It may seem a simple thing, but there is significance in it. The keys call to mind both a sobering truth and an inspiring challenge: the world only changes one person at a time.
——- About the Author
Caroline McGraw is a would-be childhood paleontologist turned storyteller, digging for treasure in people with autism & intellectual disabilities (& empowering caregivers to do the same). Her younger brother, Willie, has autism, and she writes about finding meaning in your most challenging relationships at A Wish Come Clear. Her first book, Your Creed of Care: How To Dig For Treasure In People (Without Getting Buried Alive) is a guide for caregivers, free to all who elect to receive posts via email at:
The blogosphere has been abuzz the last few days about an emerging controversy involving the new "21 Jump Street" movie starring Jonah Hill, Channing Tatum and Ice Cube. The movie, set for release on Friday, March 16th, is being promoted by a YouTube trailer, which shows Ice Cube using the term "autistic" as an insult towards Jonah Hill’s character. After a detailed presentation from Hill on a bulletin board, Ice Cube mockingly states, "This chart looks like sh*t, are you autistic?"
What makes the comment so troubling is the insinuation that autism is characterized by individuals who are messy, unorganized and incoherent, and this couldn’t be further from the truth.
It’s unclear why it was decided to include this in the movie (let alone the trailer), but autism advocates are not at all amused and according to Examiner
writer Melissa Teodorovic, calls for a boycott have already begun.
Adding to the controversy, Holly Robinson Peete (of original 21 Jump Street fame) has a cameo role in the film and certainly can’t be pleased with these developments. Peete is the mother of a child with autism and a widely recognized autism advocate. She is the founder of the HollyRod Foundation and a board member for Autism Speaks. According to Teodorovic, Peete responded to the controversy via Twitter claiming the line was not in the original script and that autism should never be used as "a punchline."
In a final twist, Autism Awareness Month is only a few weeks away and "21 Jump Street" will still be in theatres at the time. Hopefully, Ice Cube, Jonah Hill, Channing Tatum, as well as the producers of the film, will take the time to educate themselves about autism before attempting to garner cheap laughs at the expense of those who have the disorder.
Today is day 271. This represents the number of days Ayn Van Dyk has been held by Canadian authorities and kept away from her family. It also represents how long one British Columbia father has suffered indescribable pain. We’ve covered this story extensively in the past, but for the benefit of our new readers, here’s the situation in a nutshell:
On June 16, 2011, Ayn Van Dyk, a ten-year-old girl with autism, was playing in her back yard. Derek Hoare briefly lost sight of his daughter after she scaled a 6-foot-high fence. Police were notified and after a several-hour search, Ayn was found playing safely in a nearby neighbor’s yard. If the story ended there, this would’ve been a happy ending to a terrifying ordeal. However, unbeknownst to Derek at the time, his nightmare had just begun.
Three days later, Canadian authorizes apprehended Ayn at school and she has been in State custody ever since. British Columbia’s Ministry of Children and Family Development (MCFD), who
is no stranger to controversy, claimed they were simply "lightening the load" of an "overwhelmed" single father of three. No charges of abuse or neglect were ever levied against Hoare and despite having two other children at home, MCFD only took away Ayn.
A few days after the seizure, Ayn was heavily medicated with powerful and dangerous antipsychotic drugs and has since been separated from her father and siblings. She is currently in foster care and Hoare has faced a painfully slow system marked by stonewalling, incompetence and
threats. His next court hearing doesn’t take place until the end of this year, with the earliest possible date of Ayn returning to her family being sometime in 2013. What makes matters worse, MCFD officials, at their discretion, can send Ayn back to her family at any time they see fit. This case has brought a lot of scrutiny from the media and one begins to wonder if Hoare’s outspokenness against the MCFD is now being repaid with delays and stonewalling as a form of punishment.
Last week, Hoare provided an update on another site. Here are some excerpts from that post:
"… as I am sure most would understand the last 8 ½ months have been beyond nightmarish. Tortuous does not begin to describe this either, the reality is that I have dedicated my life to my kids. I have dropped everything to ensure their happiness and development and to have this culminate in an attack by my own government, who has taken no time to understand my children or my family yet claim some authoritarian power over it is monstrous. To make matters worse this is being done under the guise of “help”. They throw around phrases like “child’s best interest” as if they empower them with some dictatorial aura, yet have no idea what those words even mean…
…We are now 8 ½ months in….. 263 days….. and my daughter has yet to see an autism expert….
….I have spent dozens and dozens of hours trying to explain the situation to them, trying to explain how to appropriately treat a child with autism, to try to get them to understand the concerning behaviours of autism and how it was this terrible mistake was made….
…Within the first six months Ayn had already had 4 different social workers, this fact has been used as a consistent excuse by MCFD who justifies their inaction and ignorance with a claim of “staffing issues”…
…..I am facing an escalating battle not an improving one, one which is taking place on many different fronts; my time on [Facebook] will be limited, my time in front of cameras or in print will be on the rise, and the time I need to spend studying will also continue to be pressed only to the limits of my fatigue. I ask for everyone’s help spreading the word about this and keeping up a dialog on how it is we got to this point and what we can do to inform others of what is happening, not simply in regards to Ayn, but to the “child protection system” which has strayed so far from its goal to now become an imposing threat to the safety of children and not the heroic saviour they would like to cast themselves to be. If the populace knew how this worked it would not be tolerated, and in fact will serve as a clear exemplification of why the granting of such powers under blanket liability protections is a terrible and dangerous thing…
….Her name is Ayn… she has hopes, dreams, fears and loves…. I am one of them and I will not let her down."
Per Derek’s request, we are asking our readers to share, tweet and +1 this story as much as possible to help get it further circulated. I hold hope that our society has not become apathetic to the point where we ignore stories involving governments arbitrarily removing children from their homes without due process.
Please take the time to care and share. The next time, it could be your own child.
The Dan Marino Foundation, a fixture in South Florida since 1992, has recently announced plans to start a college for those with autism and other
special needs. According to a Fort Lauderdale Sun Sentinel article published last month, the school will be the first-of-its-kind in Florida and assist those with autism, Down syndrome, cerebral palsy and other related disorders.
With building space already purchased in downtown Fort Lauderdale, The Dan Marino Foundation Florida Vocational College will cater to students, ages 18 to 28, and open its doors in the fall of 2013.
As a resident of South Florida, this is certainly heartening news and will be a great addition to the community. The Dan Marino Foundation has maintained a great reputation over the years and was launched shortly after Marino’s son was diagnosed with autism at 2-years-old. The Dan Marino Center, which is part of the larger Foundation, holds special significance to me personally — it’s where my son was first diagnosed with autism back in 2005.
As for Marino’s son, he’s since graduated from college himself and is currently working as a DJ in Florida. Despite having many challenges at an early age, he’s been able to far exceed expectations that were made for him at the time of his diagnosis nearly twenty years ago.
For more info about the new school, you can read the full article here.
In 2010, actress and talk show host Holly Robinson Peete competed in Donald Trump’s hit reality show Celebrity Apprentice, where she placed second behind Poison lead singer Bret Michaels. As part of the season finale, Michaels and Peete were tasked to create and market a new drink flavor for Snapple. Peete, a mother of a child with autism, helped formulate Snapple’s Compassionberry Tea, with proceeds benefiting the HollyRod Foundation, an organization she and her husband founded that assists individuals and families affected by autism and Parkinson’s.
As we reported last year, Snapple disappointed many autism advocates (including Peete herself) by pulling the Compassionberry Tea from store shelves just one month before April’s Autism Awareness Month. Now, a year later, many autism advocates are hoping the drink will make a return in time for next month.
Peete, along with a host of other autism advocates, began tweeting this week, drawing attention back to the drink and its cause. Here’s a small sample of those requests:
It’s still unclear why Snapple pulled the Compassionberry flavor last year, but some have speculated that it was strictly a business decision and not related to the demand or likeability of the beverage itself. In fact, an Autism Key reader made the following comment from our previous story:
"I think it’s pretty obvious what’s going on here…There are many flavors of Snapple that don’t taste very good, but Snapple doesn’t have to split the profits with a charitable organization. I think they should cancel one of their other existing flavors and keep Compassionberry
It should be noted that after nearly two years, Bret Michael’s Trop-A-Rocka flavor is still listed on Snapple’s Web site and presumably still in stores.
A disturbing story has emerged from Deer Park, Texas, where a teacher has been accused of verbally mocking, taunting and in some cases, abusing children with autism and
other special needs. Allegations surfaced back in December at a Deer Park ISD campus, claiming the teacher verbally and physically mistreated her students. Whistleblowers eventually came to the parents with the allegations, claiming that initial attempts to notify school officials fell on
deaf ears. Now, the parents of the students want answers.
Kevin Graham, father of one of the children with autism, has called the actions by his son’s teacher "child abuse." He and other parents are pressing for the teacher to be fired, along with a supervisor who failed to take action when the alleged abuse was first reported. Both teachers were moved to other schools after claims were made public and are currently still teaching special education students.
Outraged parents and advocates are accusing Fairmont Junior High School of putting the institution before its students and sweeping the allegations under the rug.
This story is disturbing on many levels and is part of a nationwide trend involving children with autism and other special needs being mistreated by
their teachers. Oftentimes, the onus is placed on parents and students to prove their claims and it usually takes a video of the allegations going public before swift action is taken.
Case in point, in November of last year, a shocking video surfaced (posted below) that shows 15-year-old student Julio Artuz being verbally abused and threatened by his teacher, who told Artuz he would kick his a** "from here to kingdom-come." The teacher was eventually fired, but not after public pressure ensued once the video went viral. No one had believed Artuz (including his parents) about the ongoing verbal abuse until he secretly recorded one of the incidents.
Although it has been extensively discussed, there has to be a greater push to install cameras inside of classrooms across the country where special needs students are educated. Until that happens, we will continue to read about these kinds of stories and students with special needs will continue to suffer at the hands of teachers who have no business being around these types of children.
As for the spray bottle teacher and her supervisor, a board meeting will be held in three weeks among Deer Park officials, who will have the authority to overturn the administration’s decision not to fire the teachers.
Let’s hope they do the right thing and protect other special needs students from abuse in the future.
As the the 2012 election year shifts into full gear, the subject of legalizing marijuana has yet again come to the forefront. Most notably, Ron Paul has gained a large following of pro-marijuana advocates, citing his consistent pot-friendly stance during his 30-year tenure in the House of
Outside of the realm of politics, marijuana also has the autism community talking, with many questioning the safeness and efficacy of the drug for those on the autism spectrum.
In 2009, Mieko Hester-Perez made national headlines for giving her then-ten-year-old son marijuana, which she claims saved his life. With her son Joey’s weight dropping to a dangerous 46 lbs. due to his very poor diet, Perez began prescribed treatments of marijuana-laced brownies, which
caused the youngster to immediately gain 38 lbs., restoring his health in the process. In addition to an increased appetite, Perez also claims the
marijuana helped curb her son’s self-injurious behavior, wandering and aggressive demeanor — all within a short period of time.
As the Perez story made the rounds, other desperate families quickly followed suit, creating a huge tug-of-war debate about the ethical, legal and health implications of medical marijuana for autism.
Not surprisingly, some physicians have been very critical of its use and claim there is little data to support its effectiveness and argue that prolonged treatments can have huge implications for those on the autism spectrum. And as one of our authors pointed out in a story last year, the use of psychotropics and other mind-altering drugs for autism almost always result in undesired consequences.
I agree that we should be extremely wary of putting anything in our children’s bodies that will affect their mood, behavior or psychological state. However, playing the role of devil’s advocate, it’s also very difficult to argue against the success Mieko Hester-Perez has experienced with her child.
We would love to get your thoughts on this topic — please let us know what you think in the comment section below.
Courtesy: Inked for Autism, Tattoos With A Purpose
With autism now affecting 1 in 110 children (with a much higher unofficial rate), you’d be hard-pressed to find someone who is not directly or indirectly affected by the disorder. Because of these high numbers and the growing popularity of tattoos in recent years, many tattoo shops across the country are seeing a large spike in demand for autism-themed artwork.
There are also a growing number of tattoo parlors that are partnering up with autism organizations to help raising awareness and funding, with a
portion of proceeds going towards treatment and services. For example, Expressions Ink in Wausau, Wisconsin is a tattoo shop that has previously donated funds from its autism-themed work.
Adding to the growing popularity of autism tattoos, Inked for Autism, Tattoos With a Purposeis a Facebook Page established in July of 2011 for the purpose of recognizing "those who have branded their bodies in honor of someone or themselves with autism." The group has a great gallery of user-submitted photos from people who have been inked with autism-themed tattoos.
I think the idea of tattoos for autism fundraising is a great concept that has the potential to gain some serious momentum. If you are a tattoo artist (or shop owner) and are interested in donating a portion of your proceeds from your autism-related tattoos, please email us with your information and we’ll add you to this page as a resource.
Be sure to include where you are located and a website or Facebook Page link.
When choosing where to donate your funds, be sure to do your homework and consulte with your customer on what organization is the best fit for you both. Not all autism organizations are the same, so do some research and choose wisely! If you need help selecting, see our foundation and organization page for some ideas.
For those who are interested in getting a tattoo, keep in mind that this is a permanent commitment and a decision that should not be taken lightly. Check out this tattoo advice page
for some great tips and ideas if you are in the market for a tattoo. If you do make the leap, or have done so already, be sure to email us your tattoo photo and we’ll be sure to share with our readers (no inappropriate pics, please).
Those of you who have been following The United States of Autism for a little while know that the film features a family out of Iowa who are incredibly active in the 2012 US Presidential Elections, speaking about autism every time the season comes around. What you may not know is that thanks to them, the only person still currently running for president this year that has not received a t-shirt and heard about the film is President Obama himself!
Thanks to Lin, Mark, and Sam Wessels, nearly all of the 2012 GOP Presidential election candidates heard about the film, including: Mitt Romney, Newt Gingrich, Rick Santorum, Ron Paul, Herman Cain, Michele Bachmann, and Tim Pawlenty. Heck, even Mike Huckabee got his picture taken with Sam. Not only that, but videos of Sam Wessels speaking with election candidates about autism and the film this cycle generated over 370,000 hits on YouTube so far. That’s a lot of people hearing about one boy and autism, and good for the autism movement no matter what people say out there.
One of the things that makes The United States of Autism the feature documentary for autism and the 2012 election year and beyond is the strength of
the people involved.
Here, the Wessels family are not afraid to state what their views are on the movement and what they believe is necessary to move everyone forward. There are many out there who do not agree with them and we take no stance either way on the content of the message. However, those involved in the movie believe that it is far more dangerous to stifle opinions, even if one vehemently disagrees. Long term, some sort of common ground must be built for all of the individuals, whether they be children or adults on the autism spectrum, so whether you’re a parent of a severe child that cannot speak and possibly never will, to a fully functioning adult that is either excelling or searching for acceptance and growth in society, to anyone in between, all of these groups have to work together if this thing called “autism” is going to become a movement for those seeking a better life. Ultimately, this is what the film is about.
Thank you to Lin, Mark, and Sam for standing tall for what you believe and making sure the world hears you, especially in shaking hands with nearly every potential leader of the free world for the next 4 years to do so. We at The United States of Autism are proud to have you as one of our featured families, and look forward to sharing your heart with the world.
Now if only someone could help us get the message to President Obama……
Record and Time Magazine have both published articles in the last few days addressing the latest trend of characters with autism appearing in film and/or television. We’ve touched on this topic in the past and have received mixed feedback from readers on the helpfulness (or lack thereof) of this growing trend. There are some who think
the increased exposure of characters with autism is a good thing and draws greater attention to the disorder, helping to further the cause of understanding and acceptance.
However, there are some who vehemently oppose the portrayal of those with autism in film and television when it’s not done with complete accuracy. For example, a recent Autism Key reader wrote the following in response to a review we posted on Fox’s Touch:
"My biggest complaint about this show was turning the boy’s autism into a “mystical power”. While some issues were obvious to those of us who have lived with these children – others were just not….
…I’m disappointed that the boy is made out to be some sort of “future-manipulator” who can see patterns of so many different lives that wonderously
[sic] connect with each other. the final straw was the boy hugging dad at the end (even if it was to grab the cell phone out of dad’s back pocket). Oversensitivity to touch is still oversensitivity to touch….
…This is a TV show about mysticism. Throwing in the autism factor seems to be an attempt at being “trendy” with the diagnosis “flavor-of-the-week” now that autism is more in the public’s awareness."
I think my views fall somewhere in the middle of this debate. Yes, stereotypes are never helpful, particularly when it comes to how those with autism are portrayed, and repeated instances of autistics being depicted as savants or supernatural heroes certainly do not properly represent the vast majority of those with the disorder.
However, autism is a spectrum disorder by definition and I think no matter how those with it are portrayed, there will always be a segment within the autism community who take issue with writers and directors "not getting it right."
What’s most important is that these shows are stirring debate and getting others outside the autism community talking, which can be very beneficial for all involved. We have to accept the fact that there will always be errors, omissions and misrepresentations in Hollywood (no matter the topic), so I feel the responsibility of complete and accurate depictions of autism should be reserved for documentaries.
Here’s a partial list of films and television shows that have included characters with autism. There are others that could have also been included (i.e. Forrest Gump), but this list is of those that specifically address or allude to the disorder:
Extremely Loud and Incredibly Close (Film)
Rotten Tomatoes Score: 45%
Fly Away (Film)
Rotten Tomatoes Score: 83%
Temple Grandin (Film – Made for HBO)
Rotten Tomatoes Score: 100%
My Name is Khan (Film)
Rotten Tomatoes Score: 80%
Rotten Tomatoes Score: 64%
Mozart the Whale (Film)
Rotten Tomatoes Score: 77%
Boston Legal (Television)
The Black Balloon (Film)
Rotten Tomatoes Score: 88%
Snow Cake (Film)
Rotten Tomatoes Score: 66%
Miracle Run (Film – Made for Television)
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Did You Know?
* In 1970, Autism affected 1 out of 10,000 children
Out of the enormous tragedy that is Sandy Hook, rays of light are shining forth. Scarlett Lewis is the mother of Jesse Lewis, a six year old victim of the massacre. Moved by the words “Nurturing, Healing, Love” that her son wrote on a blackboard days before his death, she has created the the Jesse […]