What Is Red Instead, And Why It Matters

Back in January 2009, 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 online support groups, and even Twitter, that I learned about the issues concerning this organization. 

In April 2009, I blissfully sailed through National Autism Awareness Month and it wasn’t until the following year, 2010, when I started to understand that Autism Speaks doesn’t have the best intentions for #actuallyautistic individuals. That was frustrating enough, but to see people who have autistic family members proclaim, “Light it up Blue!” every April was heart wrenching. Even when I would rationally explain why “Light it up Blue,” and it’s creator, Autism Speaks, favored profits over actually helping autistic individuals and their families, I was met mostly with shoulder shrugs and in one case, “Yeah, I know. But awareness is awareness…”

Seriously?

It wasn’t until many years later when I noticed that a new movement had begun.

Red Instead (#RedInstead) is a movement to support Autistic individuals, not Autism Speaks. And today we answer the question of What is Red Instead, and why it matters.

Those in the #actuallyautistic community set up the Red Instead (#RedInstead) movement to help bring acceptance and support to autistic individuals and raise awareness against Autism Speaks.  And I understand that for many parents, this may come as a shock.  Why would anyone not want to support Autism Speaks? 

The #actuallyautsitic community believes Autism Speaks is the least supportive organization when it comes to actually supporting autistic individuals.  In fact, for the first ten years of their existence, their entire purpose was to find a cure for autism and to eradicate it.  This is the primary basis of the #redinstead hashtag.

When I first started to learn about the ills of Autism Speaks, I set out to do quite a bit of personal research on Autism Speaks.

I did take a look at their 2016 annual income report and actually did see why there is such an outcry. Below we will go over the numbers. In doing my research, I also noticed that their direction is much different from when it first started.

In the last few years, Autism Speaks has seemingly done a complete 180 when it comes to their mission. They have a new CEO as well to lead up these changes. Their focus is now on supporting families of autistic individuals. And while it may be a step in the right direction, I do believe they have a long 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, a minimum of, 10 to 20 years to correct. But they have taken the first steps, and for that I tip my hat to them.

What Started the #RedInstead Movement

The 2016 annual report (required of all non-profits) is two years after the change in direction. Previous Autism Speaks statements stated 4% of funds went to individuals and their families. According to these numbers, if those statements are correct, that means Autism Speaks is starting to move in the right direction.

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

This money went toward multiple 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 of their salaries paid in 2016).

Percentage of Funds Towards Family Services

Now let’s take a 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.  all together, that’s $6,298,966.

“The majority of the donated services are directly related to Autism Speaks’ 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 the right direction.

The Red Instead (#RedInstead) Movement

I have experienced quite a bit of personal growth since my youngest was first diagnosed back in 2009, and I received my official diagnosis a year later. Maybe the additional of antianxiety medications has considerably mellowed me out. Whatever the reason is, I no longer fly off the handle when I see people lighting it up blue.

Personally, even though Autism Speaks seems to be headed in the right direction, I feel it may be a case of too little too late. As far as my family is concerned, we will be going #RedInstead.

However, whether you choose to Light it Blue, Go Gold, or Red Instead, please know that families like mine truly appreciate what you do as an individual! My family is past bringing autism awareness, we are constantly working towards autism acceptance. That can only be done by individuals like yourself who care enough to do the research and make a difference!