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When we started our autism journey, I had no clue about the issues concerning the organization Autism Speaks.  It wasn’t until I joined many support groups and Twitter that I learned issues concerning this organization.  In 2018 as we got closer to National Autism Awareness month, a new movement began. #RedInstead is a movement to support Autistic individuals, not Autism Speaks. Today we answer the question of What is #RedInstead.

The #ActuallyAutistic set up the #RedInstead movement to help bring acceptance and support to autistic individuals and raise awareness against Autism Speaks.  Now for many parents, this may come as a shock.  Why would anyone want Not to support Autism Speaks? 

The #actuallyautsitic community believes Autism Speaks is 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.  This is the primary basis of the #redinstead hashtag.

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With such a movement out there, I did do some personal research on Autism Speaks. I evaluated their 2016 annual income report and did see why there is an outcry. Below we will go over these numbers. I also spoke directly with representatives of Autism Speaks and found their direction is much different from it first.

In the last few years, Autism Speaks has wholly changed up its mission. They have a new CEO as well to lead up these changes. Their focus is now on supporting families of autistic individuals. I do believe they have a considerable way to go before these changes are fully seen. Ten years of advertising a cure for Autism and not focusing on autistic individuals will take 10-20 years to correct. But they have taken the first steps, which is excellent.

 In 2018 as we got closer to National Autism Awareness month, a new movement began. #RedInstead is a movement to support Autistic individuals, not Autism Speaks. Today we answer the question of What is #RedInstead.

The basis of #RedInstead Movement:

The 2016 annual report (required of all non-profits) is two years after the change in direction. Previous statements I have read always say 4% of funds go to individuals and their families. According to these numbers, if those statements are correct, that does mean Autism Speaks is moving in the right direction.

In 2016, Autism Speaks spent a total of $95,017,352

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.  This went to a multitude of things, but the most significant individual number was $41,771,123. This went to Media and media services (donated).  That is followed by spending on salaries of $22,563,489 (across all salaries paid in 2016).

Percentage of Funds Towards Family Services

Now let’s look at how much money was spent directly on 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. 

“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”

Based on the total of the $95,017,352, only 6% went to helping individuals and their families. Considering that it states Autism Speaks donated those services, their total for 2016 was $53,246,229. From this total, just over 16% of funds were used for autistic individuals and their families. Either way, that number is moving in a positive direction.

#RedInstead Movement

Hopefully, that clears up the answer of what is #redinstead about. Whether you choose to Light it Blue, Go Gold, or Red Instead, we overly appreciate what you do as an individual! Though we are past bringing autism awareness, we are constantly working towards autism acceptance. That can only be done by individuals like yourself who care enough to research and make a difference!

The Mom Kind

Alicia Trautwein is an Autism advocate, writer, motivational speaker, and dedicated mom of four. Alicia’s desire to advocate for Autism comes from her own autism diagnosis and that of her three children, niece, and brother. Her life’s mission is to educate on autism acceptance and change the world for future generations of autistic individuals.

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3 Comments

  1. When I saw they had sponsored a stock car driver and car I vowed I’d never give them another dime.

  2. Thanks for the information.

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