What is #REDInstead | A Massive Change in Autism Acceptance

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 about 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.

A group of autistic adults has set up the #RedInstead movement to help bring acceptance and support to autistic individuals. Along with this, they also aim to 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.

Red Instead is a movement to support Autistic individuals Today we answer the question of What is REDInstead and the change in autism awareness

With such a movement out there, I did 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 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 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.

The basis of the #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, Autism Speaks moving in the right direction.

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 $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. Even in 2022, most funds that are not in use for media and staff are focused on autism research.

#RedInstead Movement

Hopefully, that clears up the answer to 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!

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  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.

  3. I’m confused as to why “redinstead” was chosen as the hashtag. Rather than sounding hopeful and helpful, it sounds like a far-right political campaign.

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