The following is a guest column by media producer/entrepreneur/advocate Donna Ross Jones. While animation is an aside herein, this piece spotlights a weighty issue that affects much of the target demographic for cartoons.
Thank you for your attention and consideration.
My son has autism, and like thousands of others, I live with the shadow of fear every day, knowing that my son may wander off at any time. Wandering is not a rare occurrence for our kids; my son sometimes walks out of our house and crosses the street (without looking first) to find a pool. Other times, he enters a stranger’s house in search of a computer or videos to play.
Wandering was most recently brought to the forefront as a national issue when Avonte Oquendo, a 14-year-old boy with Autism Spectrum Disorder (ASD), strayed from his New York City school last October. News of his death broke in mid January. Shock and sadness continue to permeate his family, his city, and the nation. All ask, how did this tragedy happen, and how could it have been avoided?
Some 92 percent of ASD affected families endure a constant state of anxiety. A primary concern is that their autistic child – unaware of dangers, unable to provide personal information, to protect him or herself, or to navigate homeward – might stray into the community, vulnerable to the darkest, worst possible outcomes.
The divorce rate for families with autistic children is 86%, which means that care of our children is a burden carried by mostly single working moms. This is a reality that I accept. I know the daily difficulties of keeping our children safe, and I know we cannot do it alone. We need a safety net starting with awareness.
Community awareness is an important means in creating security for our children. A multi-media approach is hugely effective in spreading the word, and video is particularly powerful. Think Smokey the Bear, Keep America Beautiful (the weeping Native American man), and recently, the viral hit animated music video Dumb Ways to Die and its newly released Valentine’s Day companion.
To further the cause, my company Transition Music & Media Corporation had the privilege of teaming with Basil Street Entertainment to complete the first national public service announcement (PSA) about the danger of autism related wandering. We produced this video in partnership with non-profit organizations Autism Speaks, Autism Wandering and Elopement Initiative (AWAARE), and National Center for Missing & Exploited Children.
Accomplished actress Holly Robinson Peete, herself an autism advocate and parent of an autistic child, narrates the PSA. The spot encourages everyone to learn the 3 S’s: Stop, Seek, Stay. In other words, when faced with a displaced autistic youngster, one should stop to help, seek assistance from police, and stay until authorities arrive.
In addition to, and in support of the PSA campaign, The National Center for Missing & Exploited Children and Autism Speaks promises actionable steps toward preventing and responding to wandering incidents through the development of an emergency portal on the Autism Speaks website (www.autismspeaks.org). The forthcoming portal will include autism safety information and resources, as well as phone numbers and email addresses at the National Center for Missing & Exploited Children to report a lost child with ASD.
Similarly and separately, the Department of Justice (DOJ) addresses the urgency for wandering intervention. In late January, 2014, the federal government announced its intention to fund an autism tracking device program. Days later, a clarification statement emerged: the existing Byrne grant program, engaged to subsidize many kinds of law enforcement projects - such as crime prevention initiatives, police radios, and emergency vehicle lights - will lend financial support. However, individual police stations will be required to apply for this aid and designate the worthy recipients. In other words, law enforcement agencies must complete a formal request for money to purchase the tracking units and related technology, plus educational materials. Guardians of autistic children will not enjoy direct access to the benefits. In addition, the accessibility process – one by which individual caregivers will entreaty local law enforcement for the essential materials - is elusive.
While the above efforts demonstrate good intentions, they fall drastically short of the essential, life saving goal. The aforementioned DOJ policy suggests that red tape will ensue. Given the protocol, how will a needy family receive an otherwise financially prohibitive tracking device in a timely manner? Will the Byrne grant program also pay for the monthly subscription service required to enlist a monitoring company for said gadgets? Most important, does anyone know whether these tracking systems are effective? Are there proven results via government-authorized studies? Undisputed facts are sketchy or non-existent in these areas.
For a moment, consider Alzheimer’s disease, which shares many common characteristics with autism, including wandering of the afflicted. Alzheimer’s patients also are prone to paranoia, which makes them suspicious of caregivers who might suggest the implementation of a tracking device in the form of a bracelet, necklace, or other accessory. Furthermore, autistic children with sensory issues might refuse to wear an identifying or tracking object. Without a patient’s cooperation, any government subsidies - with regard to both Alzheimer’s and/or autism - are moot.
Interestingly, during a recent investigative phone call with an official Alzheimer’s Association Care Consultant, said consultant endorsed two, for-purchase products available on the non-profit’s website: ComfortZone; and MedicAlert (I’ve fallen, and I can’t get up!) + Alzheimer’s Association’s Safe Return. Both are monthly, subscription-based, non-subsidized discovery/recovery plans.
However, the very same Consultant revealed that another option might be equally useful but less pricey: black doormats placed outside each entrance and exit of the home. Alzheimer’s patients mistake the mats for large holes, and they avoid them, thereby averting wandering incidents. Perhaps the diversion works on autistic children, or perhaps not. Corresponding data is unavailable. Nevertheless, the doormat suggestion is curious, and it certainly casts doubt on the efficacy of retail tracking endeavors for both autistic children and Alzheimer’s sufferers.
In addition to public awareness via multi-media, a pro-active, cost-conscious, back-to-basics approach might be the most effectual. According to neurologist/Alzheimer’s specialist/autism proponent/Neurology Now contributor Meril Platzer, M.D., the most useful tools in both the autism and Alzheimer’s life saving arsenals could be fingerprints and photographs on file at one’s local police station. Capturing fingerprints and storing photos are a free service of district law enforcement. Dr. Platzer suggests the updating of photos periodically to accommodate maturation of the subjects. The measure also familiarizes the afflicted with the police as a force for good (as opposed to intimidation or perfidy).
Another low-tech option includes identification sewn into a patient’s clothing. Following my son’s first grand mal seizure, I awoke to the reality of my absence (and therefore my inability to speak on behalf of my son) during an emergency. I worked with a team to create MEDI-TAGS (My Emergency Details Instantly) and put them in all of his clothes. This ensured that my son’s data would be available to speak for him always.
Price need not be a barrier to child protection. Anyone is able to create marks or patches, as simple as those including the name and contact details of a parent, guardian, or caregiver. As long as they are comfortable and securely fastened, the identifiers serve a purpose comparable with fingerprints/photographs and government issued identification cards and drivers’ licenses.
Automated tracking devices, which operate similar to global positioning systems (GPS), might be valid support for autistic children. On the other hand, given the price tag of a commercial system and the prospective delay in obtaining a federally subsidized solution, an alternative is desirable. Dr. Platzer suggests a cell phone programmed with GPS technology. She has experienced victory with this approach: while lost in Las Vegas, her 25-year-old autistic son accessed, learned, and implemented his cell phone GPS application. Within a short time, Dr. Platzer and her son were reunited.
In conclusion, the ultimate goal is straightforward and shared amongst parents, guardians, and caregivers: illuminate the specter of the autism spectrum to save lives. Clearly, further investigation, invention, and implementation are necessary. Our children deserve nothing less and infinitely more.
About Donna Ross Jones and Transition Music & Media®
Transition Music & Media is a cutting edge company led by a team of award-winning entertainment industry innovators & supported by GRAMMY® and EMMY® Award-winning artists. Transition Music & Media offers a one-stop solution encompassing all stages and phases of production from development to completion. TMC is the exclusive music provider for more than 23 TV series and 9 networks. Clients include broadcast and cable television outlets, marketing and advertising agencies, corporations, federal agencies, new media creators, independent producers, and major studios. Founder Donna Ross Jones, a recognized industry leader and autism advocate, is the Co-Founder of Special Needs Network and publisher of the online blog Autism Day By Day. She has received Congressional recognition for her instruction and advocacy impacting public policy and helping families living with autism. To learn more visit www.transitionmusicandmedia.com and www.autismdaybyday.net.