Every year in April, an international tradition is celebrated that autistic people dread, and that’s Autism Awareness Month. In response, autistic people created Autism Acceptance Month, as acceptance promotes action, while awareness is passive.
Autism Awareness Month was created by the Autism Society of America (ASA) in 1970 and became internationally recognized thanks to Autism Speaks (AS) and their “Light it Up Blue” campaign every April 2. Even before the latter organization emerged in 2005, autism was viewed as a fate worse than death. What AS has always had that the ASA doesn’t is their marketing campaigns, which have painted autism as a dark and demonic force that robs children from families. They’ve even gone as far as to compare an autism diagnosis to being struck by lightning. Although their marketing campaigns are not as extreme as they once were, that doesn’t mean they’ve changed much since then.
To this day, AS promotes Applied Behavioral Analysis (ABA), which is a harmful therapy that has caused PTSD in 46% of those exposed to it. In its history, the creator of ABA, Dr. Ole Ivar Lovaas, was infamous for slapping and shocking children who acted autistic or didn’t comply. While slaps and shocks are not used that often anymore, even the “new ABA” is still problematic for many reasons that Kaylene George, or Autistic Mama, talks about.
It doesn’t just stop at ABA. Even now, Autism Speaks still promotes harmful ideas in the name of “awareness” (more like “bewareness”) in their 100 Day Kit. The one presented has been mysteriously edited recently, but from 2014 to 2020, this document was given to parents by doctors after their child got diagnosed. The newer version is here, which contains a lot of the same material, but has omitted the more offensive sections and wording that will be discussed.
One of the first issues in the toolkit is when it talks about gastrointestinal (GI) disorders. “Treating GI problems may result in improvement in your child’ s behavior,” the document states. “Anecdotal evidence suggests that some children may be helped by dietary intervention for GI issues, including the elimination of dairy and gluten containing foods.” Anecdotal evidence is not scientifically proven, therefore a parent can be easily misinformed and given false hope.
Beyond that, the most extreme example of negativity comes forth in the section, “You, Your Family and Autism” starting on page 14. In this part, the toolkit encourages the parent to go through the Kübler-Ross five stages of grief. The five stages are used when receiving catastrophic news, such as the death of a loved one. With AS comparing the condition to being struck by lightning and other deadly events, their framing here is not surprising. The kit includes a quote from a mother of an autistic son who was mad that the school cooked dinner for a boy with leukemia but not her son. In effect, this kit directly compares autism to a deadly disease.
“Expressing your anger releases tension,” it states. “It is an attempt to tell the people around you that you hurt and are outraged that this diagnosis has happened to your child.” Promoting a negative attitude could rub off on the rest of the family, creating a sense of resentment toward the child for the way they were born. Educating parents and creating awareness about autism does not have to be portrayed in a sad light. Thankfully, the Autistic Self Advocacy Network (ASAN) has created a toolkit of their own for parents to follow, and written in a much more uplifting manner. Furthermore that, the kit also adds, “There may be times when you feel helpless and angry that autism has resulted in a life that is much different than you had planned,” acting as if the parents’ expectations are more important than the child’s hopes and dreams.
Lastly, the kit claims that approximately 10% of autistic people “lose” their diagnosis. If losing a diagnosis means not being autistic anymore, that’s impossible, as it’s genetic and something that a child is born with. It is possible for some autistic people to mask their traits so much that it’s no longer obvious (which causes trauma in the long run). Not only that, but it can give a parent false hope that their child might just be within that miraculous 10%; to be fair, that wish wouldn’t exist if parents were given proper resources and not having fearmongering pushed on them.
AS has been known for their “Light it Up Blue” campaign, where landmarks around the world are lit blue to celebrate autism awareness. The reason it’s blue is because autism is primarily seen in boys, but in reality, women and nonbinary individuals are often under-diagnosed and not counted. As a protest against Light it Up Blue, autistic people prefer to light it up “Red Instead.” The writer of the blog Learn from Autistics explains why perfectly.
“Blue is typically understood to be a symbol of loss, grief, and despair,” they said. “Not surprisingly, many autistics prefer to be associated with a color that symbolizes fire, passion, and heart.”
The Red Instead movement has had some success, as the Rhode Island State House has lit their building red and gold to promote autism acceptance for the second year in a row. Maybe other government buildings and landmarks will take note moving forward.
When people criticize AS and their followers, they can sometimes react with hostility towards autistic people who disagree with them. For example, when Fierce Autistics and Allies held a protest against one of Autism Speaks’ virtual walks, the husband of one of the board members attacked one of the organizers with an aggressive Facebook message. This was the same year that Autism Speaks started their “Kindness Counts” campaign.
It goes beyond just online messages, though. In 2010, when the Ohio State University (OSU) chapter of ASAN protested a walk, a group of Autism Speaks supporters swerved their car and almost hit the group’s faculty advisor, then drove away laughing. Other people shouted at the protesters, saying things like “Are you all stupid?!” and “Go home, you suck!” The irony is they attacked the very people who they claim to be advocating for. One of the protesters even wrote how they felt afterwards in a blog post, leaving the person feeling drained and questioning their activism altogether.
Because of the negative rhetoric spewed by organizations like AS, Autism Acceptance Month was created by autistic people worldwide as a counter-celebration. Why acceptance? The writer Kassiane S. said it best on ASAN’s website.
“Acceptance requires facing that which makes you uncomfortable about us, thinking about why it makes you uncomfortable, and confronting any prejudice at the root of that discomfort. To accept us is to make a conscious effort to overcome that prejudice, to recognize that your discomfort with our differences is far more your problem to overcome than ours.”-Kassiane S.
While awareness itself is not inherently bad, acceptance is needed in order to balance things out, since awareness does not provoke action, but acceptance does.
There is also a fine line between being honest about autism and the challenges that come with it, and absolute fearmongering. Many autistic people suffer from anxiety and depression (which often stems from the discrimination they face and lack of access to proper services), as well as seizures and physical issues like Ehlers-Danlos syndrome. Far too often, the messaging of AS and similar organizations isn’t directed at those individual issues, but rather autism as a whole.
Autism is not inherently wrong in itself, which is why autistic people deserve acceptance. If awareness could be made specifically about the medical issues that autistic people would rather live without, then perhaps Autism Speaks’ campaigns would be considered more in line with their wishes (as well as pushing society to be more accepting in general beyond just being “aware” of the condition). But until then, Autism Awareness Month and Autism Acceptance Month will be two distinct celebrations by groups with differing ideologies. Whether you choose to #LightItUpBlue or #RedInstead, now you know what both movements entail.