April 20, 2012
By Autism Society
An Autism Society billboard was recently installed in Texas. While feedback has been very positive, some individuals on Facebook have expressed concerns about the word “born.” Please note the intention of the billboard, which was completely funded by an individual donor, was to get a message out to the general public about the rising incidence of autism. The billboard was not meant as a venue to state the Autism Society’s organizational position about the finer points of the cause or course of autism. We provide more detailed information on our website.
The Autism Society is open to engage in discussion with those interested in improving the lives of all affected by autism. We understand that there will always be points we don’t all agree on, but individuals with autism living quality lives is not one of them. Debate is healthy and has always been welcomed at the Autism Society. Our issue with some of the discussion is that, instead of being a constructive discussion about messaging, some have attempted to elicit a campaign against our organization. This type of discussion distracts from the positive intentions of the billboard as well as the important work that should be our shared expectation and focus.
Despite limited resources, the Autism Society is incredibly fortunate to have a national network of chapters, run by volunteers, including parents, individuals with autism, professionals and others in the community willing to give their time and energy to advance our mission. It stems from our deep gratitude to the thousands who have given their time and support over decades that we take issue with those who choose to create controversy and take away from efforts that really impact people’s lives. Energy spent on discussion of word choice will not improve anyone’s life, nor will it bring real training to professionals, address waiting lists or the unavailability of vital services, nor will it generate greater understanding and support from the community. Today, the Autism Society is the nation’s largest grassroots organization committed to helping individuals with autism. We work so individuals can be treated with dignity and have opportunities that maximize their independence and autonomy.
Over the past year or so, the Autism Society has made some very deliberate changes. Our board of directors and advisory panels are comprised of individuals completely dedicated to improving the lives of all affected by autism. This includes people on the spectrum, but also their family members, professionals who work with them, as well as friends and communities. We strongly believe that we must get beyond the belief that only parents can do this, and accept that those who are not living with autism can be just as dedicated. Collectively, our voices and efforts can truly affect change. The national office and Autism Society chapters seek out those who bring wisdom, knowledge, support and the willingness to stand up for, and with, those living with autism every day. The Autism Society is incredibly proud of its chapters and network of volunteers and dedicated professionals around the country. We will continue to focus our energy toward an organization that supports and strengthens their efforts.
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Topics:Living with Autism
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Submitted by: Waraji Date: April 23, 2012
To Autism Society, In the debates about autism, "born" appears to support only the genetic and not the environmental causes of autism. On the other hand, "energy spent on discussion of word choice" CAN help people to use more inclusive language and WILL IMPROVE the lives of ALL people with autism and their families and our society. ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ If you instead say: "1 in 88 children HAVE autism" then it bypasses the Genetic v.s. Environmental controversy which could turn out very helpful for the cause. Words very much DO matter.
The wording "BORN" with it is wrong and misleading. It negates the fact that many if not most acquired autism by some environmental agent or vaccine injury. I know with 100% certainty that my son WAS NOT BORN WITH AUTISM!!! It has been heartbreaking to watch a sweet normal baby and toddler completely disappear and have a steady decline in his quality of life !!!
Dear Autism Society, words are important. "Born" is a DIVIDING message. Replacing "born" with "diagnosed" and you have a UNITING message. You said: "The billboard was not meant as a venue to state the Autism Society’s organizational position about the finer points of the cause or course of autism." (Except that by saying "born" you DID venture into "finer" points) ...and wait! A billboard IS a valuable venue! Please, Autism Society, use your donations wisely! IMHO, if you had re-pasted/rearranged the text to say: 1 in 88 children are diagnosed with autism. You could have kept the same visible size font. (I am a former sign painter AND high functioning autistic) THAT would be a uniting message. ^_^
Who cares about THIS donor. Why don't you please most of your donors and take the time to put up an accurate billboard. 1 in 88 children GOT Autism by age 7. They were born in 2002. Today we don't know the prevalence of this epidemic, but we would like to find the environmental causes to cure and prevent Autism. Every few years Autism has been known to increase by up to 100%.
This billboard misleads the public. My daughter was Not Born with autism. Did the level of my toxicity increase my baby" 's chances of "autism" aka heavy metal toxicity? yes it did. I know my daughter suffered a very high fever the night of her Dtap and job. Her brain was on fire. She soon became sensitive to sound and slowly her development became delayed. Do a little bit of research on the effects of mercury on the brain...this is not rocket science.
I also support your work, but I think you should change the wording on your billboard. While some children seem to be born with autism from exposure to toxins while in utero, most react to vaccines after birth in a way that plummets them into autism. The wording on the billboard implies that there's nothing parents can do to stem the rising tide of autism, and that's not the case. My baby reacted to the hep-B vaccine at birth, which I had said I didn't want her to get, with four days and nights of endless screaming, vaccine-induced encephalitis, and was later diagnosed with autism. She was born healthy.
It would have been simple to word it factually, so it did not have points with which to disagree, such as "Autism affects 1 in 88 children". It would have been admirable had you assumed responsibility, rather than shifting it to a donor, and it would have been compassionate to recognize the hurt caused with an apology, rather than defensiveness.
Make them take it down. It is a lie. The billboard has Autism society website which implies AS paid for it or endorses the message. AS has a responsibility to make sure the truth is told. The message is not consistent with many experts including Geraldine Dawson from Autism Speaks who have said that environmental factors play a significant role in the autism increase. She said autism increase is a "crisis and an "epidemic". The message is based on one person desire to influence public opinion with a lie. My son was not "born" with autism in fact his genetics test came back "normal". So I strongly object to someone presenting their belief under the guise of an autism organization.
re: "we take issue with those who choose to create controversy and take away from efforts that really impact people’s lives. Energy spent on discussion of word choice will not improve anyone’s life..." You probably shouldn't even have bothered to write this article, because it just reinforces that you really don't get it. I agree with Amy that it would be better if you would "Instead of defending the wording, apologize and ask how we can all come together to work through this in the future." There is not a hint of apology in this article. Instead, you belittle the concerns raised as merely a discussion of word choice, and bemoan being targeted, instead of engaging in the "constructive discussion" that you supposedly welcome. This is a very significant word choice. It goes to the heart of an extremely important issue. Don't you get that?
There should be an Autism Action group totally made up of parent board members. That is where the problem is. No one else should be speaking or making choices for these children but their parents.
I don't feel like those of us who take exception to the phrasing of the billboard are "splitting hairs" or looking to find fault. And actually, it's not just the "spirit in which something is done" that matters. I definitely appreciate good intentions, but in issues like public awareness campaigns, the particulars do matter. My child was not born with autism, and if I had believed he was, the way his doctors (who had never noticed anything amiss for 2 years) suddenly believed he had been, I would never have been able to hope for his recovery. 4 years later he is a happy, neurotypical, recovered child. His injuries have been largely reversed, and my son is back. He was not born with autism and using that phrasing is inaccurate and harmful to the people you are trying to help. Parents who believe children are either "born with" autism or aren't may put off seeking help when their child shows signs of regression because they are sure they were developing normally once and therefore could not have been born with autism. Once a diagnosis is received, parents who are convinced their child was "born with" autism may not seek recovery believing that it's impossible to heal something that is a part of how their child was made. Most of all, there is a massive community of parents within the autism community screaming from the rooftops that we watched our normally developing, typical children regress into autism, many times directly following a similar event. Our children were not born with autism, they developed it, and to us the phrasing matters. It matters so much that putting up a billboard saying "1 in 88 children born with autism" marginalizes us and exploits our children. It exploits them because they are counted in the "1 in 88" numbers, but are being used to send the opposite message that we are trying so desperately to get out there. If you want to say "X number of children born with autism" then find out how many parents agree that their child was "born with autism" and use that number. But I don't want my child included in this count.
Dear ASA, The "1 in 88 children born with autism" caption "was completely funded by an individual donor" you say....so that makes it ok? Are you trying to weasel your way out of this by blaming Autism Action Network because they are calling you out on this blatant propaganda campaign? ie - "some have attempted to elicit a campaign against our organization"... You are also NOT apologizing I see, to the thousands of parents who saw their children regress into autism after vaccination nor apologizing to the other thousands that you continue to try and keep in the dark with your archaic messages - from your website -- "There is no known single cause for autism, but it is generally accepted that it is caused by abnormalities in brain structure or function. Brain scans show differences in the shape and structure of the brain in children with autism versus neuro-typical children. Researchers are investigating a number of theories, including the link between heredity, genetics and medical problems. In many families, there appears to be a pattern of autism or related disabilities, further supporting a genetic basis to the disorder. While no one gene has been identified as causing autism, researchers are searching for irregular segments of genetic code that children with autism may have inherited. It also appears that some children are born with a susceptibility to autism..." Trying to blame an anonymous "donor" is a smoke and mirrors trick. People are not buying your blatant misinformation and denial of the nature of most autism - which is a regression in a normal child after being exposed acutely or chronically to toxins in their environment, especially vaccines. How many other anonymous people are funding your "born with it" campaign?
So if I donate a billboard sign, I can use your name & logo to say whatever I please? Really? I have always had a lot of respect for Autism Society. I try to choose well when I make a donation. Sorry, I will not be making future donations to Autism Society until the message "Born with It" is removed & I think an apology is in order as well!
But wording IS important as it could be an indicator as to what can be expected from an autism organization. For example, if an organization believes autism is genetic (BORN with it) could we ever hope to see research funded as to environmental causes or can we expect help for treatments and therapies in the biomedical category? Cause of autism is important; it can direct you to the most appropriate therapies and treatments.
I wanted to thank you for all of the great work you do. As the parent of a son on the spectrum, I have gained so much insight and wisdom from autistic adults. I really appreciate that your organization includes autistics, parents and professionals. It is for that reason that when people ask me how they can help with autism, after telling them to just exercise kindness and compassion, I tell them to donate to the Autism Society. I didn't even notice the wording on the billboard, but I also do believe that my son was born autistic. That said, I can understand the feelings of people who take issue with the wording, and as is so often the case, think the best approach is to seek to understand rather than be understood. Instead of defending the wording, apologize and ask how we can all come together to work through this in the future. There will always be outliers who cause chaos and problems for their own reasons, but I think that most of us -- autistics, family members and professionals -- although we have disagreements among ourselves about what the problem is and how to approach it, all do want to make the world a better place.
I think you are doing great work and people who split hairs will find fault with anything. It's the spirit in which something is done, not the particulars.