This “In Their Own Words,” is written by Glen Finland. She is the author of “Next Stop,” a memoir about raising her autistic son to adulthood and learning to let go.
Last year my autistic adult son David wrapped up twenty years of education, ten of them spent in private school, the other half in public school. And, hindsight being 20-20, here’s what educating a high functioning autistic son like David taught me. It’s simple mathematics: Send your kid to public school and keep your money in your wallet. You’re going to need it for what happens next—because what happens next is the rest of his life.
Parents of a young adult with special needs face an unending management of another person’s life over the decades ahead: housing, transportation, insurance, clothing, food, job coaching, medical expenses, and, of course, quality of life expenses like entertainment, vacations, and even pets. Think of how far the tuition fee of a single year of private school could go toward taking care of some of these expenses down the road. Now multiply that figure by twenty. The numbers will tell you if it’s a wise investment.
In public school with a good IEP, the services are free. They should be; you’ve already paid for them with your taxes. Your child will also learn in less of an isolated bubble—and yes—be forced to toughen up a bit by facing the real world struggles of life in the quicker moving mainstream. Don’t expect runaway success there. In fact, be prepared for regular bouts of failure. But no matter how painful the lesson, down the road your child will be that much better equipped for the the daily slights he’s sure to incur—those careless, casual assaults on his spirit that he will face simply for being differently abled.
For example, it has come to my attention that my 23-year old son is now a heavy tipper. These days he drives a 54-mile roundtrip each day to his job as a custodian at a federal office building outside the nation’s capital. He’s a good driver, but when he stops off for coffee along the way, he might pull out a $20 bill to pay for a single cup of java, then walk away. His generosity is not because he’s got such deep pockets; it’s because he wants to avoid the impossible math involved in the exchange and, even more, the eye contact that goes along with it. Whose pocket that leftover chunk of change ends up in is totally dependent upon the scruples of the particular cashier. It took me months to figure out where all his change was going and how to remedy the situation with a few five dollar bills, but these are the kind of real world surprises that continue to sneak up on us every day. This reminds me to be careful about who I allow to “keep the change” when it comes to planning ahead for my son’s future.
You know, it’s true what mothers have always said about the time with our children: “The days go by like years, and the years go by like days.” So go ahead and let your child ride the big yellow public school bus for now. It’ll do him no harm. And that way he can count on your really being there for him once school lets out for good.
“In Their Own Words” is a series within the Autism Speaks blog which shares the voices of people who have autism, as well as their loved ones. If you have a story you wish to share about your personal experience with autism, please send it to email@example.com. Autism Speaks reserves the right to edit contributions for space, style and content. Because of the volume of submissions, not all can be published on the site.
As more and more is learned about the biology of autism, the development of novel medicines to treat its core symptoms is no longer just a hope. Therefore Autism Speaks was pleased to be invited to participate in the 5th annual FasterCures-Esquire Leadership Forum, devoted this year to the topic of translational research, that is, how to translate knowledge gained from basic research into products that can provide real healthcare benefits for patients.
FasterCures, a Washington D.C. think tank focused on accelerating medical solutions, is based on the founding principle that saving time saves lives. Since 2005 they have brought together a cross-disciplinary group of innovative thinkers to explore novel approaches that hold the potential to accelerate the search for new treatments and cures for diseases. With representatives of biotechnology, pharmaceutical and patient advocacy organizations in attendance, the theme for this year’s small workshop was to determine action items to achieve innovation in drug development. Attendees agreed that in order for this to happen as fast as possible, there needs to be better integration between all stakeholders – patients, financiers, academic researchers and for-profit companies alike. The meeting participants called for the identification of new business models and research paradigms to achieve this integration.
Full of buzz words such as “open innovation,” “collaboration,” and “entrepreneurship,” the discussions focused on identifying the organizational and cultural barriers that influence the interface between traditional academic research and industry-related drug development. This interface has long been called the “Valley of Death” because of the enormous difficulty in translating research discoveries into viable medical solutions. While the government has begun several initiatives to push biomedical research forward across the Valley of Death, for-profit organizations such as pharmaceutical and biotechnology companies are beginning to unite to address the challenges that make it inefficient and, at times, impossible, to carry forward such risky and costly research on their own. Some of the challenges identified at the meeting include the many knowledge gaps that remain in our basic understanding of human biology, the lack of financial incentives to work in some disease areas, and the constraints created by business policies that are meant to provide competitive advantages but instead often hinder progress.
The short meeting highlighted lessons learned from other industries and several new models of collaboration. At its conclusion the participants agreed that streamlining the drug development process will involve not just procedural improvements but much more partnering than has ever been attempted before, including between individual pharmaceutical companies and between pharmaceutical companies and academia. This opens a role for non-profit advocacy organizations such as Autism Speaks in bringing together the many diverse players, each with their own motivations and incentives. Towards this end, Autism Speaks has recently formed a Translational Research Initiative that aims to enhance communication between academic scientists and industry representatives and nurture our renewed hopes for successful translational research in autism and new healthcare solutions.
Read more about translational research from our Chief Science Officer, Dr. Geri Dawson.
Study follows new siblings of kids with autism (Baltimore Sun)
Autism is a collection of related neurobiological conditions that is being reported more often. Researchers are now exploring genetic and environmental factors that may contribute to the disorders that affect social interactions and communication. M. Daniele Fallin, an associate professor of epidemiology at the Johns Hopkins Bloomberg School of Public Health, is the principal investigator of a multistate study, called the Early Autism Risk Longitudinal Investigation, or EARLI, that is looking at siblings of those with the disorders. Read more.
Autistic Icelandic Boy Inspires Winslet to Start Fund (Iceland)
English actress Kate Winslet announced yesterday that she has established a fund to support people with autism in cooperation with Margrét Dagmar Ericsdóttir, the mother of autistic Icelandic boy Keli, the star of the documentary A Mother’s Courage: Talking Back to Autism (original title: Sólskinsdrengurinn, or “The Sunshine Boy”) by director Fridrik Thór Fridriksson, for which Winslet did the English narration. Read more.
Delight as Avenue School earns outstanding praise (UK)
Pupils and staff at The Avenue School in Tilehurst are celebrating after the school become one of the first in the country to be ranked ‘outstanding’ by a disability charity. Read more.
This show means more than most to the artists (Westerville, Ohio)
“Disability” and “creativity” are not mutually exclusive attributes. That’s one lesson viewers can take away from “The ADDvantages of Art,” an exhibition that opens Saturday at Gallery 202 in Westerville. Read more.
Donor covers full cost of guide dog (Canada)
The offer of assistance came right out of the blue. Members of the Merritton Lioness service club had been planning on putting a little bit of their fundraising proceeds aside each year to eventually pay for a guide dog for someone in need. Read more.
This is a guest post by Sara Lee Kessler, the reporter, producer, and writer of “Decoding Autism” on NJN Public Television. “Decoding Autism” will premier on Monday, September 27 at 9pm EDT on NJN1. Viewers can also watch online here.
I have been NJ Public Television’s Health & Medical Correspondent for nearly 15 years, and have done stories on every medical condition imaginable. Autism is the most heartbreaking topic. It’s heartbreaking both because it wreaks havoc with parents’ emotions and dreams for their children and because it frustrates the child who can not express his needs. Autism spectrum disorder is a devastating diagnosis, especially because there is no known cause and no cure.
When I first started reporting on autism, in 1997, it was rare. Few people had heard of it. Today, it’s unusual to meet someone who doesn’t know a family that’s impacted by autism. Some people are calling it an epidemic because the numbers keep going up. One in 110 children is now being diagnosed with an autism spectrum disorder. Here in New Jersey, the rates are one in 94, which has the highest prevalence rate in the nation. While there’s disagreement on whether the ever-rising autism prevalence rate constitutes an epidemic, I think we can all agree that, at the very least, it’s a major public health crisis!
That’s the reason, even after doing at least 30 “Healthwatch” reports on autism, that I decided to delve deeper into the topic and produce a documentary. Over the last eighteen-months, I have interviewed autism experts, educators and dozens of parents, children, and scientists for this project. But, ultimately, I decided that “Decoding Autism,” should focus on what doctors know, what scientists are finding out, and how the flurry of autism research across the nation is starting to shed light on this mysterious disorder.
What I’d like to share with you, and what’s most encouraging to me, is that some of the best minds in the nation are working on autism. They are researchers who are looking for and who have discovered gene variants involved in autism. They are psychologists or neuroscientists who are conducting infant-sibling studies on “at risk” children, meaning infants who have an older brother or sister on the autism spectrum. It was amazing to learn that infants who go on to develop autism spectrum disorders tend to look at a mother’s mouth, rather than her eyes, missing important social cues. So, that’s why so many children with autism tend to be mind-blind! Everyone I interviewed shed so much light on the subject of autism.
I was particularly fascinated by what researchers told me about the brains of children with autism. I learned that, at core, autism is a brain connectivity disorder that causes signaling delays. No wonder children with ASD have trouble communicating! One expert told me that the brain of a child with autism has a tangled web of abnormal neural connections that fail to prune at critical stages and that the brain of such a child tends to be larger.
I also learned that we should be talking about the “autisms,” with an “s,” rather than autism, because, just like cancer, there are many different types of autism. Scientists say it’s critical that they find biomarkers, so they can develop treatment targets. As you’ll surmise when you watch “Decoding Autism,” I’m optimistic that today’s research will lead to tomorrow’s prevention strategies, earlier intervention, better therapies and, even cures. That’s critical because parents of children with autism deserve answers.
For the third year in a row at the start of the United Nations General Assembly in New York City, first spouses and dignitaries from around the globe assembled today for the Third Annual World Focus on Autism, hosted by Autism Speaks, the world’s largest autism research and advocacy organization. Mrs. Ban Soon-taek, wife of the U.N. Secretary-General and Hosts Suzanne and Bob Wright of Autism Speaks, were joined by Co-hosts Dee and Tommy Hilfiger and more than 10 first spouses to discuss solutions to combat the global crisis of autism.
The international coalition in attendance represented a wide array of countries. The participation of the first spouses demonstrated a striking endorsement of global efforts to raise autism awareness. The group joined together for a Q & A session with world-class experts from the scientific community and discussed international solutions to raise global awareness and promote research into this non-discriminative disorder.
Fashion magnate, Tommy Hilfiger, expressed support for Autism Speaks by saying, “My wife Dee and I are delighted to be participating and lending our support to this cause. Autism prevalence is rising here and around the globe at an alarming rate. We will do whatever we can to help with this fight.”
In her opening remarks, Mrs. Ban Soon-taek welcomed the international group on behalf of her husband U.N. Secretary-General, Ban Ki-moon stating, “Autism is so personal but also so global. The United Nations is proud to be part of the international response… Last April, we marked World Autism Awareness Day (WAAD). I was privileged to take part in this massive social movement for solidarity.”
In the wake of Autism Speaks’ wildly successful autism awareness effort in celebration of WAAD, “Light It Up Blue,” in which more than 200 iconic landmarks, airports, bridges, sports arenas, museums around the world were illuminated in blue lights on the evenings of April 1 and 2, 2010, Suzanne Wright, Autism Speaks Co-founder, said “the world can expect to be bathed in blue” in 2011 as all of the attending first spouses agreed to participate and expand the program in their countries.
Other speakers at the World Focus on Autism included Geri Dawson, Ph.D., Autism Speaks’ Chief Science Officer, Andy Shih, Ph.D., Autism Speaks’ Vice President of Scientific Affairs, Dr. Liri Berisha, President of the Albanian Children’s Foundation and wife of the Albanian Prime Minister. Other prominent attendees included Mrs. Chantal Biya, First Lady of Cameroon; Mrs. Elsie Christofias, First Lady of Cyprus; Mrs. Rosa Elena de Lobo, First Lady of Honduras; Mrs. Eloise Gonsalves, Spouse of the Prime Minister of St. Vincent and Grenadines; Mrs. Maja Ivanova, First Lady of the Republic of Macedonia; Mrs. Mathato Mosisili, First Lady of Lesotho; Mrs. Rosella Nestor King, First Lady of St. Lucia; Mrs. Valeria Toribiong, First Lady of Palau; and Mrs. Lilita Zatlere, First Lady of Latvia.
On Monday, September 20, 2010- which was arguably one of the best days of weather we have enjoyed this year- Autism Speaks proudly kicked off its Inaugural Autism Speaks Fall Classic. Joining us was our title sponsor, Shop Rite, and together we hosted an exciting day of golf at the illustrious Baltusrol Golf Club in Springfield, NJ. It was a wonderful day that included an afternoon shotgun start on Baltusrol’s famed Lower Course. The tournament included several course contests and culminated with a Hole in One by Dr. Peter Kapsimalis who will take away a lease provided by Ray Catena Lexus of Freehold. We are thrilled to announce that the Fall Classic raised over $200,000 for Autism Speaks!
Evening cocktails included a silent and a live auction that offered an opportunity to help fund family services initiatives for adults with autism. Honorary Co-Chair and Autism Speaks Co-Founder Bob Wright rolled highlights from the first annual and highly successful “Light It Up Blue” initiative on World Autism Awareness Day, on April 2. Event Co-Chair and President of The Bachman Company, Scott Carpenter hosted the evening program which included a “Thank You” video with a personal message from himself and fellow event Co-Chairs, Anne & Dave St.Clair. The video was a touching piece that provided the Baltusrol audience with an overview of what autism is and why their support is so crucial to our cause.
Gravel pit rejected (Canada)
Pat Hanson dreaded the prospect of a gravel pit operating a stone’s throw from her backyard. Read more.
Staten Island officials focus energies on autism (Staten Island, N.Y.)
With 5,000 children and adults suffering from autism on Staten Island, and the numbers climbing, Borough President James P. Molinaro is joining with community groups and others here to launch a boroughwide initiative aimed at getting families the help they need in dealing with the disease. Read more.
This weekend’s made for walking (Waltham, Mass.)
As the weather turns from oppressively hot to mild and crisp, area residents are lacing up sneakers and hitting the pavement for good causes throughout the state. This weekend is no exception. Read more.
Victoria committed to helping all children with autism (Canada)
I recognize that changes announced to autism programs last fall have not been easy on families who were previously enrolled in the Early Intensive Behavioural Intervention (EIBI) programs. However, there is a balance we have to strike between available funding and our ability to serve as many children and youth as possible. Read more.
Dedication is served at Starpoint (Pendleton, N.Y.)
Sometimes in sports the game means so much more than the final score. For Starpoint’s boys volleyball team, this past Friday was one of those nights. With Starpoint up two games to none against Maryvale and leading 21-14, coach Kirk Spitler made three substitutions. Read more.