Issue 14 – Exposing Autism Speaks
I helped start this magazine because when my children were diagnosed, I was scared and overwhelmed but as time went on I learned that I didn’t have to be. There are a ton of resources and help out there and I wanted to help parents sort through all the information to decide what is best for their child. I want you to know that you don’t have to see “autism” as a burden just perhaps a different journey that may require an alternate roadmap.
With this in mind, I would like to discuss an issue that has been of great concern to the autism community recently – Autism Speaks. A lot has happened in the past month or so and the most prominent of them being a boycott of Autism Speaks and its Sponsors. Now as a mom with two children on the spectrum, and an American, I have heard of Autism Speaks. In the beginning, the three mentions I would hear about were that people raised money doing an Autism Speaks walk and in April people “Light It Up Blue” for autism and at every major retailer I get asked at the register if I want to donate money to help an autism family. So when I could I gave money and I thought I was helping families. However, I started to rethink this when people I know needed help and reached out to the organization and after hours of compiling paperwork and filling out more paperwork and fulfilling all the requirements they were all denied. So I started to do some research into how much actually goes to these “autism families” that customers are told need the financial help and I was appalled. I didn’t realize that non-profits could spend that much money on salaries and so little (by comparison) on the very families that they claim to be helping.
As the editor of an autism magazine, I try to respect both sides of every discussion and I believe everyone is entitled to their own opinion but I also believe that we have the right to know what is being done in our own community. I have had the worries of not being able to afford special measures to keep my door locked to prevent my child from wandering. I was one of those families that could’ve used help, but I didn’t realize what was behind Autism Speaks and the masses of money they collect by using our “autism families” as their lure. I have read countless articles and blog posts about Autism Speaks. However, I really didn’t take the time to research it further because I figured people can choose who they want to support; that is the beauty of America – choice! Besides, the mission statement seems so positive and they even claim to bring “hope,” “raise awareness,” and are dedicated to finding “treatments,” but what is meant by and what will come of the biomedical research? How exactly is a neurology going to be “prevented” or “cured?” Neurology isn’t an illness. Will any of this science result in harming people/babies/embryos/etc.? I have many questions to which I couldn’t find answers.
When Suzanne Wright posted her “Call to Action” speech, which started a whirlwind of controversy it made me realize that in America we also have free speech and I wanted to let people know what is going on besides Light It Up Blue. Awareness is needed but so is a positive approach; so people don’t fear or pity ASD people. Knowing the word “autism” isn’t enough. I believe people fear the unknown and for many they don’t know what autism is – it is unknown. So why don’t we educate people and show the public that people with autism are awesome and loving? I believe with knowledge will come understanding and with understanding will come acceptance, which will hopefully put an end to bullying and hostility.
For many people in the Autism Community the Call to Action was the last straw and instead of remaining silent, the boycott was formed. Since I wasn’t following this, I asked Renee Salas why she was part of The Boycott against Autism Speaks and you can read her article after reading Inner Aspie’s article Changing Perspectives: This is Autism. Ultimately, I was asked where I stand and I started to research. The bottom line is this – I and therefore Autism Parenting Magazine as a whole will not support an organization that uses their press releases to create pity for autism families instead of knowledge of ASD, that claims to offer hope (hope of what?) and that gives more to their employees then they do to the families that they are supposed to be helping.
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Since I would never expect any of you to just believe anything you read, I encourage you to go to Autism Speaks website to see the Audited Annual Reports, there are many categories but let me show you the top seven areas in which money was spent in 2012 (since 2013 isn’t available yet):
- Salaries $18,484,028
- Science grants ,790,797
- Supplies and Equipment $3,332,651
- Benefits $2,989,492
- Professional Services $2,877,697
- Advertising $2,212,520
- Family Services $2,048,552
I am tired of all the gloom and doom in the media about autism, which is why I was happy to help start a magazine that focuses on the strengths of ASD people while finding resources for areas in which they need help.
When my children were diagnosed I was pointed towards Autism Speaks and their First 100 Days Kit. I found the suggestions were depressing and pointed me towards ABA therapy (and its variants) as my only options, which may work for some children but what about other options?
The turning point for me was when people kept telling me, “I would’ve never known your children have autism. You all seem so happy.” WHAT?! I would look at them with my jaw dropped or better yet people would quizzically say the classic line, “But your children don’t “look” autistic?!” I am not mad at people that say these things because they don’t know that you can live with autism because Autism Speaks is the loudest voice out there and it continues to show autism as a deadly illness, refusing to listen to people with autism. Like when, Suzanne Wright the Co-Founder of Autism Speaks publicly announced in her Call to Action that “These families are not living. They are existing. Breathing – yes. Eating – yes. Sleeping – maybe. Working – most definitely – 24/7. This is autism. Life is lived moment-to-moment. In anticipation of the child’s next move. In despair. In fear of the future. This is autism.”
This is not hopeful or helpful. Part of Autism Speaks’ mission statement clearly states that Autism Speaks “…works to bring hope to all who deal with the hardships of this disorder.” Do not claim that every autistic family is struggling because every family is different and every person handles things in their own way. I am not going to say that parenthood is blissful all the time but who went into parenthood thinking parenting was easy? Also, by making a public announcement that people with autism are burdens and because of them their families aren’t living you are creating hatred towards autistics. How can you claim that you want acceptance when you clearly don’t treat people with autism as equals?
The other day I read a blog post from Tricia of http://crittersandcrayons.com/ entitled Parenting is Like Sledding. Sled Optional. and in it she writes how while trying to answer her daughter’s question of “Is it easy having kids?” Tricia honestly explains to her daughter that “…something can be TOTALLY NOT EASY while still being simultaneously TOTALLY AWESOME.” To which her insightful first grade daughter equates parenting to be like sledding because although you have to trudge through the snow uphill it is totally worth it for the awesome ride down. This is how I view parenting. However, just because I admit that it isn’t always “easy” does not mean in any way I would ever say that children are a “burden.” If you need help to get your child services, or to find a better therapy, or to plan for their future then let’s help you. Let’s join together and help each other.
In the past, I often used to tutor children that were adopted from other countries and sometimes those children would have a learning disability or neurological disorder that the parents didn’t anticipate. I remember one mom that told me, “She wasn’t prepared. She had read all the parenting books and none of this was in there.” She was scared and I took her hand and told her, “Then it is time to get some new parenting books and together we will figure it out.” This is me taking your hand and telling you this is not a death sentence and together we can make a positive difference while still being respectful.
So as of today, Autism Parenting Magazine publicly announces that they Boycott Autism Speaks and hopes that others investigate the charities that they support to make sure that their mission is one that you fully support and that their money is going to issues that they believe will make a difference.
Alternatively if you would like to get these automatically delivered to you, you can get a subscription emailed to you by subscribing at https://www.autismparentingmagazine.com/pdfsubscription/All the best, Leslie A. Burby Editor-in-Chief
Issue 14 features:
- Changing Perspectives: This is Autism by Inner Aspie (Shawna)
- Autism Speaks Boycott by Renee Salas
- Interview with Dr. Frank Gaskill by Leslie A. Burby
- Bridge the Gap Gala Raises over $100 Thousand by Leslie A. Burby
- New Year Evolution by Kim McCaffery
- Autism in the News: ASD Options for Living Independently by Megan Kelly
- Parent/Teacher Communication and Students with ASD by Dr. Mary Houser
- Book in the Spotlight: A Best Practice Guide to Assessment and Intervention for Autism and Asperger Syndrome in schools by Dr. Lee A. Wilkinson
- Q&A Section: What other organizations and schools are there to support? by Leslie A. Burby
- Snow Much Fun by Leslie A. Burby
- Death, Grief and Autism by Jaclyn Hunt