By Stella Marlin Glowacki, contributing writer
Autism Speaks is one of, if not the biggest, autism-focused organization out there, raising 94.5 million dollars in 2018, according to their website. But where is that money really going? Many autistic people actually advocate against supporting Autism Speaks. Every year Autism Speaks divides up their budget. In 2018 only 1% of their money actually went to autistic individuals and their families, while some executives were paid over $600,000. Maybe this would be different if they had more than 2 autistic people on their 28 person board of directors.
Autism Speaks is known for speaking over and vilifying autistic people in their campaigns. In 2006, they released a documentary called “Autism Every Day” in which one mother admits to considering driving herself and her autistic child off a bridge, only refraining because of her other daughter. In 2009, Autism Speaks put out a commercial called “I Am Autism”. In this commercial autism is personified as the narrator, and claims that it will, without a doubt, ruin marriages, bankrupt people, and that it will “steal your children and dreams”. Autistic people fight to dismantle this perception, but Autism Speaks knows that they can profit off of it – off of the fear and confusion of parents.
When Autism Speaks isn’t villainizing autistic people, they’re infantilizing them, portraying all autistic people as unintelligent and unable to speak for themselves. This is blatantly not true; people with autism are all different, and just like everyone else, can have varying levels of intelligence. There is even evidence suggesting that autism often correlates to higher IQ. This idea, however, is not convenient to an organization dependent on talking over autistic people, and trying to make them like allistic (non-autistic) people at all costs. And the cost can be great.
Autism Speaks is known to support the controversial applied behavior analysis (ABA) therapy, and, while the name may seem harmless, ABA therapy is controversial due to its more often than not harsh approach to forcing autistic children into situations and behaviors that are stressful and traumatic to them. In an article in “The Atlantic” titled, “Is The Most Common Therapy for Autism Cruel?” Ari Ne’eman, president of the Autistic Self Advocacy Network, says, “ABA has a predatory approach to parents,” and that they push the message that, “if you don’t work with an ABA provider, your child has no hope.”
The autistic-run website NeuroClastic.com even has an entire section dedicated to information on how ABA is harmful, including several personal stories from autistic people who went through the therapy. One says, “In many cases, these children don’t report their ABA horror stories until adulthood. It takes them that long to process the traumatic events that occurred and to realize they were wrong. We wish these horror stories weren’t so common, but they are.” While Autism Speaks does seem to be making strides towards making sure ABA is as easy for the child as possible, many autistic adults say that it’s just not enough, and that popular autism therapy will need a serious overhaul.
So what can be done locally to support autistic people in a way that they find helpful? Well, one simple thing that can be done is abandoning the blue puzzle piece. This symbol, the Autism Speaks logo, has been harmful since its conception. The reason for using a puzzle piece was to imply that there is something missing, or not right, about people with autism, and the reason for making it blue was the old belief that only boys could have autism. Neither of these things is true. Autistic people are complete people and can be of all genders, races, and ages.
Many autistic people and autistic-led organizations encourage people to “light it up red” for autism acceptance in April, National Autism Acceptance Month, in contrast with Autism Speaks’ “light it up blue” campaign. These organizations ask people to display the red or rainbow infinity symbol to show their support for autistic people. Consider donating to autistic-run organizations such as the Autism Women & Nonbinary Network, or the Autism Self Advocacy Network. Try to actively use language such as “autism acceptance month” over “autism awareness month”. People are aware of autism, but it’s time to start acknowledging it the right way.
To NHS teachers: consider swapping out your blue puzzle piece stickers for the red or rainbow infinity symbol of autism awareness led by people with autism. #RedInstead this April.