What is #RedInstead About?

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 #RedInstead movement was set up 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? 

From the #actuallyautsitic community, 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.  This is the main 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 do see why there is out cry. Below we will go over these numbers. I also spoke directly with representatives of Autism Speaks and found their direction is much different than it first was.

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

 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 fund go to individuals and their famillies. If those statements are correct, that does mean Autism Speaks is moving in the right direction accodring to these numbers.

In 2016, Autism Speaks Spent a total of $95,017,352.  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 the amount spent in salaries of $22,563,489 (across all salaries paid in 2016).

Percentage of Funds Towards Family Services

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. 

“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 those services were donated, their total of 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 are doing as an individual! Though we are past bringing autism awareness, we are constantly working towards autism acceptancae. That can only be done by indviduals like yourself who care enough to research and make a difference!

Looking for more?

Whether you just received an autism diagnosis or several years in, finding the right support is key. If you have specific needs you are needing help with, we are here for you. To find out more and to get your free session, click here to learn about Autism Parent Coaching.

By 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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