If you want to support autistic people, stop demanding that they act less autistic (and start by letting them stim)

An autistic person faces a number of challenges- especially in the areas of language difficulties and sensory processing difficulties. An autistic person also faces a number of challenges which are primarily due to most non-autistic people not understanding autism. Some of this is general ignorance but a lot of it is leftover from this idea that autism is a thing that needs to be cured and autistic characteristics are “symptoms” of a “disorder” and therefore need to be “treated.” They’re “challenging behaviors” that need to be “extinguished.” 

So a big one that we need to leave them the heck alone about is “stimming.” 

“Stim” is short for “self-stimulatory” behaviors we see autistic people do. It’s part of the DSM criteria for an autism diagnosis- “restricted, repetitive behavior”. This can look like hand flapping, rocking, repeating words/phrases/song lyrics, vocalizations, shaking/wiggling toys or other objects, or other repetitive tinkering with things… The description of these behaviors can significantly differ depending on who’s doing the describing. Here we have an ABA therapist who justifies targeting repetitive behavior because it keeps kids from learning. Here we have a person who surveyed 31 actually autistic people about stimming and, spoiler alert, they don’t think it’s something that needs to be eradicated. Autistic people describe their stimming as something they do to release anxiety, something they do out of joy or excitement and also as a coping mechanism for boredom. Maxfield Sparrow writes “The number one reason we stim is simply because it feels really good.”  He goes on to write “Why is it so important to let a person keep their stims? You might as well ask why it is so important to let a person keep breathing. Stims are the way our bodies interact with the world. We need our stims, and we will suffer without them.” Please click that link and read the whole article- it’s important information but it’s also a joy to read- a window into how autistic people experience the world in an incredibly positive way. 

But for those who don’t understand what it is, stimming looks “weird.” A woman in this trailer for a project called “Stim Your Heart Out” talks about how knitting on the bus causes people to want to talk to her and be around her- but if she does knitting-like movements with her hands and no yarn, it does the exact opposite. People are freaked out by her. And that’s another reason people cite to try and stop their autistic loved ones from stimming- it looks weird and they don’t want them to be bullied, misunderstood or made fun of. It’s a legitimate concern- not just because of the social ramifications but because of safety reasons in a country that routinely kills black people in stops that happen because someone says they’re “acting suspiciously.” I think specifically of Elijah McClain- but there are other examples. This study looks at the media coverage of police killings and shows that the word “disability” is often left out of reporting- and also that a victim’s “mental illness” (a term that an uneducated or deliberately manipulative person might use in place of “autism”) is included in a justification for use of force. The study suggests that 30-50% of those killed by police have a disability. 

So- if our autistic community members have this thing they do- that they need to do- that doesn’t hurt anybody in and of itself**… do we force them to stop so they appear normal? Do we insist that they just sit down and be quiet because our school system requires them to do that in order to “learn”? Do we just accept that law enforcement will forever think that “looking suspicious” is grounds for the use of force? Or can we instead inform the general public of what stimming is and make our community a place that accepts autistic people’s needs? Can we celebrate stimming? Can we imagine a classroom that includes time and space for stimming? Can we educate law enforcement about stimming? Expecting autistic people to suppress a normal biological/physiological/psychological process is both unfair and unnecessary. 

**That said- there ARE some good reasons to redirect or change a stim. Maxfield Sparrow lists three: 1. when the person’s stim could cause injury to themselves or others, 2. When the person’s stim is keeping them from doing something THEY want to do or 3. When the person’s stim might cause a police officer to shoot them or another temporary environmental reason that puts them in immediate danger. “Because it looks weird” or “Because we refuse to make accommodations” are not good reasons. We need to know better and do better. Autism Acceptance includes making space for the needs of our autistic community members. Stimming is a fundamental need.

If you want to support autistic people, reject ABA

TW/CW: ABA, torture, abuse, ableism, conversion therapy

This is so loaded, I gotta take a deep breath… 

“ABA” stands for “applied behavior analysis” and it continues to be regarded as the gold standard “treatment” or “intervention” for autism. The methods are based on the theories of BF Skinner (1904-1990) whose work centered around behavior modification using rewards and punishments. You reward or “reinforce” a behavior you want and you punish a behavior you don’t want. O. Ivar Lovaas (1927-2010) is credited with being the “father of applied behavior analysis (ABA)” and creating a systematic method of behavior modification based on Skinner’s theories. As you can read about on Appliedbehavioranalysisprograms.com, his behavior modification methods first targeted homosexual “behavior” of young boys in “conversion camps” that he established. He then expanded his methods to target modifying the behavior of autistic children. Those methods included corporal punishment, screaming in kids’ faces (there are pictures), withholding of affection and shock treatment. Instead of distancing themselves from this monster- and I don’t think it’s hyperbole to call him that- ABA establishments continue to bear his name. People defend him by talking about how his methods were just as bad / comparable to the methods of others in the field of psychology at the time. How that kind of excuse continues to fly in this cultural climate where people are publicly shamed and/or fired for posting insensitive tweets 10 years ago is beyond me, but here we are. Not only is he not exiled, his core methods/theories (although toned-down and reframed in most cases… but still not in others) are now replicated by behavior therapists as part of a billion-dollar industry. 

Today, 50 years or so later, ABA services are covered by major insurance companies. ABA services are provided to students in public schools through intensive sessions and reinforced many times by 1:1 aides who serve to uphold the “behavior support plan.” Parents of autistic children receiving new diagnoses are advised to immediately put their children into ABA services- sometimes for 20-40 hours a week. The Autism Speaks website claims

“More than 20 studies have established that intensive and long-term therapy using ABA principles improves outcomes for many but not all children with autism. “Intensive” and “long term” refer to programs that provide 25 to 40 hours a week of therapy for 1 to 3 years.”

(Ugh… so if you do 25-40 hours a week for 1-3 years, you might get an “improved outcome.” And that vote of unconfidence is from ABA’s biggest and loudest supporter…)

If I ever have the time, I will be writing more about the “efficacy” of ABA therapy according to available research (spoiler alert, it’s scant and inconclusive), but what I believe is the strongest argument in support of rejecting all ABA practices outright is the feedback we are getting from the autistic community. ABA attempts to change “problem behaviors” and this is often how their “success” is measured (they don’t throw themselves on the floor when they want something anymore=success). Those measures do not include or acknowledge the side effects reported by people who have been subjected to these treatments. In a study titled “How much compliance is too much compliance: Is long-term ABA therapy abuse?” the author found that 

“Compliance, learned helplessness, food/reward-obsessed, magnified vulnerabilities to sexual and physical abuse, low self-esteem, decreased intrinsic motivation, robbed confidence, inhibited interpersonal skills, isolation, anxiety, suppressed autonomy, prompt dependency, adult reliance, etc., continue to be created in a marginalized population who are unable to defend themselves.” 

In Invisible Abuse: ABA and the things only autistic people can see” , CL Lynch describes how the “new” ABA is still harmful. She includes several videos of typical current ABA practices. Her criticism is similar to those of other autistic authors- that ABA seeks to make an individual appear less autistic (by reducing harmless stimming, forcing eye contact, etc.), that it demands blind compliance, that it ignores reasons for “problem behaviors,” that it encourages autistic people to ignore their sensory needs instead of advocating for them and ultimately that their feelings don’t matter. 

In “On hurling myself into traffic to avoid ABA therapy” by alexanderstreasuresblog , the author provides a first-hand narrative of his ABA experience including forced eye contact and the labeling of any of his protests/refusals as “scripting” (and so therefore, not valid and counted as a “problem behavior” according to the ABA therapists). 

In the post titled “ABA” from the blog “Unstrange Mind” by Max Sparro we are given a breakdown of the many problems with ABA as well as an account of personal experience. Please read the quote from the post below: 

“A therapist might tell you that “a little crying” is a normal thing, but I was once an Autistic child and I can tell you that being pushed repeatedly to the point of tears with zero sense of personal power and knowing that the only way to get the repeated torment to end was to comply with everything that was asked of me, no matter how painful, no matter how uneasy it made me feel, no matter how unreasonable the request seemed, knowing that I had no way out of a repeat of the torment again and again for what felt like it would be the rest of my life was traumatizing to such a degree that I still carry emotional scars decades later. It doesn’t matter whether the perpetrator is a therapist, a teacher, a parent, or an age-peer: bullying is bullying.”

The article “Why No Autistic Child Should be in ABA Therapy” by Shannon Des Roches Rosa provides yet another autistic perspective and an overview of the issues with ABA and how we need to change the way we support our autistic community: “…autistic children need supports and accommodations, not interventions based on non-autistic child development and conversion therapy.”

I have been researching this topic for over a year now and I keep hoping that there’s something I’m missing. I keep hoping the situation isn’t what it looks like. Because what it looks like is that people are making money compelling vulnerable parents to enroll their autistic children in absurd amounts of therapy hours- services which do not reliably meet their subjects’ target goals (which are problematic in and of themselves). These therapy services are based on archaic principles that the field of psychology abandoned long ago and methods created by an abusive monster conversion-therapist. These therapy services are performed on a marginalized minority of individuals- who have a PRIMARY DIFFICULTY EXPRESSING THEMSELVES VERBALLY- making them the most vulnerable population to abuse because they either can’t protest, or their protests are labeled as “problem behaviors.” I am not okay with this reality- and I keep doing more research hoping to find evidence that I’m wrong, but the more I learn, the worse it looks. This is a human rights issue that we need to, as a first baby-step, make the general public aware of.

More to come.

(I need a graphic artist, clearly)

If you want to support autistic people, do not use the puzzle piece

**MAJOR TRIGGER/CONTENT WARNING: This post links to articles which use ableist language/outdated vocabulary, and highly offensive anti-autism propaganda videos

The ubiquitous symbol for “Autism Awareness” has been the puzzle piece. The puzzle piece symbol was created by the National Autistic Society based in the UK in 1963 and it originally looked like this:

(image credit- Autism Wiki https://autism.wikia.org/wiki/Puzzle_Piece_Logo ):

That’s a weeping child, for those in the back.

Helen Green Allison, a founding member of the National Autistic Society, attributes the puzzle piece design to a parent in the then-fledgling group. In this account**, she explains:  

“The puzzle piece is so effective because it tells us something about autism: our children are handicapped by a puzzling condition; this isolates them from normal human contact and therefore they do not ‘fit in’. The suggestion of a weeping child is a reminder that autistic people do indeed suffer from their handicap.”

The puzzle piece ribbon was adopted by the (US-based) Autism Society in 1999. Autism Speaks was founded in 2005 and uses the puzzle piece as their official logo. It used to be all-blue, some speculate, because they assert that autism is more common in boys (that’s a whole other topic beyond the scope of this post). Of all the organizations related to autism, Autism Speaks is most likely the one that you’ve heard of and you might assume that whatever they’re doing is probably good for autistic people. Here’s where I’ll remind you again to please listen to autistic people before you move forward with that assumption.

Autism Speaks has, from its beginning, approached autism as a disease-to-be-cured. It’s moving at a turtle’s pace to get away from that mindset and is really only doing so due to social media pressure.  The organization has put out propaganda that has served to frighten parents of young children into seeking intensive treatments or else face a lifetime of heartbreak because of autism. Here’s a video they put out that includes a mother-with her autistic daughter in the room- talking about wanting to drive off of a bridge.  Here’s another one called “I am Autism” talking about how autism knows where you live and is going to bankrupt you and ruin your marriage, etc. Here’s the transcript if you, like me, can’t stand even a few seconds of it: I debated over whether to include links to these videos in this post because they’re so offensive- but I think it’s unbelievable that an organization with so much visibility would produce statements like this and it’s important that people- especially potential supporters/donors are aware of it. Many autistic people refer to Autism Speaks as a “hate group.”

So back to this puzzle piece… Imagine seeing the logo of the group that has served to misinform the general public about your identity, forcing your caregivers to subject you to ill-informed treatments… how would you feel about it? The puzzle piece is also considered to be generally infantilizing- as if autism affects only children or renders all autistic people childlike into adulthood. The puzzle piece, now, is a litmus test. Its use means an organization has not sought out the actual autistic perspective (bad)- or they are aware of it and are discounting it (worse). The symbol embraced by the autistic community and the neurodiversity movement is a rainbow infinity symbol, meant to represent the diversity of the autism spectrum(see my shirt below from Peachie Speechie🙂

Again, if you’re going to use April to support autistic people, I will ask you to please seek out #actuallyautistic perspectives by searching that hashtag. You can easily find autistic perspectives on the puzzle piece symbol by doing a quick google search, but here is one article I found that lays out the arguments against using it particularly well: altogetherautism.org.nz/autism-no-puzzle-nothing-wrong-with-us/ Here’s another one with lots more about why the puzzle piece is offensive- as well as symbolic colors to wear in support (#redinstead or gold) instead of blue: https://intheloopaboutneurodiversity.wordpress.com/2019/03/20/the-ableist-history-of-the-puzzle-piece-symbol-for-autism/