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When we started our autism journey, I had no clue the issues concerning the organization Autism Speaks. It wasn’t until I joined many support groups and twitter that I learned of the discrepancies and major issues concerning this organization. As we get closer to National Autism Awareness month, a new movement has begun. #RedInstead is movement to support Autsitcs, not Autism Speaks.
The #RedInstead movement is to help bring acceptance and support to autistic individuals as well as raise awareness against Autism Speaks. Now for many parents, this may come as a shock. Why would anyone want to Not support Autism Speaks? Don’t they bring mass awareness and support for Autism?
Well, simply put, no. Autism Speaks is actually the farthest from supporting Autistics. For the first ten years of existence, their entire purpose was to find a cure for autism and eradicate it. Not support, but to get rid of Autism.
In order to be able to support #RedInstead, you first need to understand why Autism Speaks is not an organization to support. Here is my top 4 personal reasons of why I do not support Autism Speaks.
Let’s first dive into why I do not support Autism Speaks
I first want to explain that I do not base my opinions on any one person or organization based on other people’s opinions. Research is one of my strong suits. When I began hearing all the negative around Autism Speaks within the Autism Community, I jumped right into research mode.
One of the first things discovered about Autism Speaks is they had done a complete overhaul two years ago. All of the information I had gathered from others was based on the previous decade of Autism Speaks, not the current two years with the new company president and mission in place.
An Email Arrives with Perfect Timing
God works in mysterious ways. As I begun my research into Autism Speaks, the local executive director reached out to me. She had offered to meet over coffee and discuss what the organization had to offer. Now that’s a quick way to get my attention!
It was a few weeks later that we met up at a local Starbucks. I arrived a little early, and my nerves were on edge. My anxiety peeks when I have to meet someone new. Though Starbucks is a familiar location, it is busy and hard for me to identify someone new. I fully admit though that I read her LinkedIn profile and had seen her picture prior to the meeting!
I went up and ordered my usual cold coffee (Grande Carmel Frappuccino with an extra shot of espresso!). While stepping back to wait for my coffee, the executive director of my area and her associate asked if I was Alicia, which I smiled and answered yes.
She offered to buy me a coffee, which was definitely a great gesture. I explained I had already ordered but thanked her for her kind gesture. After I received my coffee, we went out side to sit down and chat. It was much quitter out there, so easier for me to focus on the conversation!
The Conversation Begins
The conversation began with basic introductions. Most of the information she told me about herself I already knew, but that’s okay lol. The other person with her was the field development manager. We actually found a common ground by a friend that works at my husbands work. That helped put me at ease for the conversation.
The executive director had asked about my children (the autism connection for her). I explained about both Little Man and Bean, and that they were two of four kiddos. (At this time, we hadn’t received Yeti’s diagnosis).
She explained that she had started offering these coffee dates to really connect with parents and explain the companies new mission. I did love that she brought this up on her own, and this brought a positive light to the conversation.
She explained the new mission of Autism Speaks and the different resources that they offered. One nice resource they have are parent volunteers that are there to answer phone calls of questions from parents. The experience of other parents of autistic children is always a nice resource.
I truly believe that her purpose and goal in life is to help families of autistic children. That is a great life focus and I applaud her for that. At the end of the day, that is all of our goal in this big picture.
I was excited to find out many of the local free resource they offered. They had a support/education packet for local schools. They offer training for first responders to better understand autism and have free local events for family. These events include parent support meetings and even sensory friendly Santa events.
4 Reasons why I do not support Autism Speaks
Terminology used by people comes from education and environment. There are certain words I will not use solely based on how those words affect others. Even if I do not completely understand why, I will not use those words in my conversations. So when a word came up that fell into this category, it completely derailed any further conversation.
Reason 1 of why I do not support Autism Speaks: Insulting Terminology
It is amazing the power of words. So much so that one individual word can taint an entire conversation. For this coffee date, that one word was “epidemic.” When the conversation got way, she was casually speaking and referred to the “autism epidemic.” This is one word that throws a monkey wrench into their new mission.
For reference, an epidemic is defined in Merriam- Webster’s dictionary as 1: an outbreak of disease that spreads quickly and affects many individuals at the same time. 2: an outbreak or sudden rapid spread, growth, or development.”
Autism is not a disease. Using the term epidemic in reference to Autism is insulting at best. The fact that this term is still in her vocabulary goes to show an underlying belief that autism is a problem that needs eradicated. Not that it is part of Neurodiversity and a different brain functioning that could use support from the mass funds Autism Speaks brings in.
Reason 2 of why I do not support Autism Speaks: Percentage of Funds Towards Family Services
In 2016, Autism Speaks Spent a total of $95,017,352. This went to a multitude of things, but the most significant amount was $41,771,123. This went to Media and media services (donated). That is followed directly by the amount spent in salaries of $ 22,563,489 (across all salaries paid in 2016).
Now let’s take a look at how much money was spent directly to the resources helping autistic individuals and their families.
In 2016, $3,280,353 was used directly for Family services grants, awards, and research. Meetings and Events that directly went to family services totaled $3,018,613. Together, that is $6,298,966. Out of the $95,017,352 spent by Autism Speaks in 2016, a whopping 6% of funds used to support Autistics and their families. 6%!!
Reason 3 of why I do not Support Autism Speaks: How funds are Used
As mentioned prior, in 2016 a total of $41,771,123 were spent towards media. This is the statement in reference to that expense as stated in Autism Speaks 2016 Financial Statement:
“The majority of the donated services are directly related to AS’s awareness campaign and family service efforts, which are included in program services in the accompanying consolidated statement of functional expenses. In-kind contributions and donated services include donated media (television and radio broadcasting and other forms of media, including public service announcements) valued at approximately $41,370,000 and $40,013,000 and professional advertising and other services related to such”
The world is very aware of Autism. What we need now is acceptance and support. Support for autistic individuals, and support for their families to improve the quality of life for autistic individuals.
This mass misuse of public donated funds goes solely to the purpose of promoting the Autism Speaks organization. This large percentage of funds (43%!) should be what is used towards helping individual autistics and their families. When people donate to Autism Speaks, they’re unaware that 43% of everything they donate is used for media coverage.
Reason 4 of Why I do not Support Autism Speaks: Use of Government Funds
This one is a pet peeve of mine. The point of non-for-profit organizations is to be supporting a need within the community. There for, our government allots funds to help these organizations as well as give them tax exemptions for doing so.
The sheer fact that Autism Speaks brings the funds to be able to spend over 95 million dollars in expense, they should not be accepting any funds from our government. In comparison the $28,351 they received in government funds is small. That being said, it still negates the fact that they obviously do not need it.
Now the argument could be that in order to stay tax exempt, they have to remain a non-for-profit. That would be fine if they were using those funds to help individuals. The government nickel and dimes individuals, so I am sure if Autism Speaks offered to only take $1, they would happily oblige.
Why I do not Support Autism Speaks
So as you can see, I have some significant reasons of why I do not support Autism Speaks. Though their annual report presents a hugely positive picture that any parent would want to get behind, their annual financial report shows a much different picture.
If you are looking for an organization to donate to, I would recommend the Autism Society of America or the National Autism Association. Another great way to help is to support autistics by shopping at locations that hire autistic individuals.
For the World Autism Day and National Autism Month, I challenge you to wear #redinstead to show your support! You can shop for shirt through my shop here.
There Ya Go!
That was our 4 reasons why I do not support Autism Speaks and how to bring awareness to the #RedInstead movement! Make sure to use that purple button below to subscribe to our newsletter to stay update with posts, giveaways, and freebies!
Alicia Trautwein is an autism parenting coach living in Missouri. She is the creator behind The Mom Kind, a website dedicated to parenting neurodiverse families. She is one of the head creators behind the #WeLoeveMoms campaign and is also featured in the “Amazing Moms” coffee table book by Hogan Hilling & Dr. Elise Ho. She shares her expertise along with her experience in parenting children, both with and without autism.