Autism Speaks Silences Autistic Voices

Janeb13/Pixabay

Nathan Nayor/Staff Writer

April is often known as Autism Awareness month, a month dreaded by people with autism. On a yearly basis we see puzzle pieces and blue shirts encouraging people to learn about autism, when in reality this does nothing but stigmatize it. 

            The puzzle piece and “light it blue” campaign were popularized by Autism Speaks, an organization loathed by autistic people who have had the misfortune of dealing with them.  In their 2009 ad campaign, they infamously compared autism to cancer, a guarantee to a failed marriage and kills faster than some of the deadliest diseases out there.  None of this is true: We have yet to hear of someone who has died of autism and the divorce myth generated by the video is nothing more than falsehood. The ad promises a cure for an incurable condition that needs not a cure, but acceptance.

            Old ads aside, only a meager 1% of the donations go to family services, compared to 20% going into fundraising.  Looking at the yearly pay of $600,000 for the executives, this is not a charity but a scam.  There is not a single executive in Autism Speaks who has autism; there used to be one, but he left just as soon when he realized he was not going to be respected.

            A service that Autism Speaks provides is Applied Behavior Analysis (ABA), which has been proven again and again to be highly ineffective, with one report from the Department of Defense stating that about 81% of recipients have seen little to no changes.  To those unfamiliar with ABA, it is the encouragement of neurotypical behaviors and discouragement of autistic behaviors, like self-stimulating techniques.  Often, discouragement involves aversives (discomforting punishments) such as electric shocks.  The issue with using aversives in any behavioral therapy is that it is a fast-track to mental issues in the future.  A similar “therapy” provided is the Early Start Denver Model, which is ABA but for babies between 1-2 years of age.  While containing all the issues of ABA, not only does it have very little empirical evidence for working, it takes place somewhat earlier than autism testing is usually done on children (for reliability), which is about 16-30 months. 

            Why should a person with autism be punished for harmless behaviors like stimming, a very important self-regulatory behavior to provide the stimulation an autistic individual may need? Why spend so much money trying to force people to blend in at their own expense? Another treatment on the site is Pivotal Response Treatment (PRT), which in its goals straight away says its aim is “relief from disruptive self-stimulatory behaviors”. That is the equivalent of the old “corrections” against left-handed people. Boo hoo, your child needs to calm themselves down in a way you don’t like, get over yourselves.  I honestly cannot continue looking through the rest of the website and their propaganda of horror.

            What can we do to actually support autistic people? Well, to start off, do not use the puzzle piece nor the “light it blue” campaigns.  The puzzle piece was originally made to symbolize how “perplexing” autism can be and how it’ll “always be a mystery”.  No.  If you want to know about the autistic experience, ask someone who has it.  Secondly, it often symbolizes how an autistic child will always have a “missing piece” and that it is cause for shame.  Why should anyone be ashamed of how they are born if they cannot control it?  As for “Light it Blue”, that color has often been used to symbolize loss and grief, a message Autism Speaks has pushed time and time again. Your child’s not dead, Karen. 

If you want to use a symbol for autism, use the infinity symbol.  This is a more recent symbol made to represent how autism is a diverse spectrum, and that an autistic individual is a complete person without a missing piece.  As for colors, that depends on your country.  In the United States, “Light it Red Instead,” and in the UK, “Light it up Gold.” These are used to support Autism Acceptance month, which is a marked difference from the normally recognized “Awareness” month in that it encourages allistic allies to accept and accommodate autistic folk instead of pity them and search for a cure. 

Secondly, ask what your autistic friend needs, listen to them, accommodate them.  This is far more desirable than a “cure”.  Add subtitles to a screening, reduce flashing lights, whatever it is they ask for as one’s needs can vary greatly from another’s.  If they ask for you to refer to them with identity-first language (“autistic person”) instead of person-first language (“person with autism”), respect that, as the connotations of a difference like that can change greatly.  If you need to change a plan, do it ahead of time.  Use clear language and don’t rely on vague language and body language.  This article cannot speak for everyone with autism, so please ask your friend what it is they need, and do not expect it to be the same needs as another friend.

“Allistic (non-autistic) people need to do their own research and readings centering autistic people, preferably by autistic people, and definitely updated with information.” Suggests Rosen Gordon, an autistic friend of mine, “Follow autistic accounts on Instagram, such as @NeuroClastic, @AutisticTyla, @NeurodivergentRebel, @The.AutisticCats, and @ActuallyAutisticTikToks. Make sure you view content from autistic people of color, women and nonbinary people, including people who are multiple or all of the aforementioned identities. A lot of traditional autistic research has focused on White boys, and that erases a lot of us who are autistic.” Mx. Gordon finished.

Thirdly, if you’re representing autism, do NOT pull a Sia.  If you choose to go into activism and represent autism in a project or something, use the experiences of someone who has it instead of going off stereotypes.  Cast an autistic actress to play an autistic character.  For goodness’ sake, don’t restrain an autistic person having a meltdown, that can cause physical harm to everyone involved. It is pivotal to get your friend away from the triggering stimuli so they can calm down.  A person having a meltdown is not a tantrum, it is a distress call. 

The ever-tense relations between Autism Speaks and the autistic demographic continue to grow as the organization speaks over autistic voices.  It is important to teach others the harm this organization does as well as popularize truly helpful organizations, such as NeuroClastic, Neurodivergent Consulting, Autistic Self Advocacy Network, and Autistic Women and Nonbinary Network.  There is still a lot of work to do to make sure the autistic demographic of America gets the necessary acceptance and accommodations, and it is up to the generation of change to bring it about.

DISCLAIMER:

The opinions presented within this page do not represent the views of PantherNOW Editorial Board. These views are separate from editorials and reflect individual perspectives of contributing writers and/or members of the University community.

Image by janeb13 from Pixabay

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