The Autism Spectrum According to Autistic People

Autism neurodiversity
Autism neurodiversity

If not electroshock at the Judge Rotenberg Center, then what? Try access to communication

For decades, the Judge Rotenberg Center (JRC) in Canton, Massachusetts, has been using a device called a graduated electronic decelerator (GED) to shape the behaviors of children and adults using painful electroshock.

The GED is worn by students 24 hours per day, every day— even during sleep and showers. It looks like a backpack with wires coming out of it that have electrodes on them. The electrodes are strapped to a disabled person’s body—often a child— and that is the point of contact where the shocks as punishment will singe their skin, at times causing third degree burns.

You can learn more about the GED and JRC in this article:

The Shocking Truth About ABA, Autism, and Abuse

After 30 years of public protest, the FDA issued a ban on electroshock for use on disabled children

On March 6, 2020, the Food and Drug Administration (FDA) issued a ban on the use of painful shock devices on disabled people:

[The] FDA has determined that these devices present an unreasonable and substantial risk of illness or injury that cannot be corrected or eliminated by labeling. This ban includes both new devices and devices already in distribution and use; however, this ban provides transition time for those individuals currently subject to ESDs for the identified intended use to transition off ESDs under the supervision of a physician.

Federal Register, 3/6/2020

But the ban on electric shock therapy was overturned.

Proponents of shock therapy challenged the ban in court, buying enough time to allow them to continue their use of electroshock “therapy” until the Federal Court of Appeals ruled on July 6, 2021, that the ban was an overreach of authority from the FDA.

Proponents of shock “treatment” argue that nothing else has worked. In an NBC News segment, Cynthia McFadden reported on the arguments from the Judge Rotenberg Center:

JRC decried the ban, saying in a statement that it would prove in court that during its rulemaking process, the FDA “abandoned science” and “ignored countless hours of testimony and volumes of information, and hid expert testimony supporting the use of the GED.”

NBC News, Cynthia McFadden, April 28, 2021

Abandoning science

The Judge Rotenberg Center remains one of the more extreme examples of applied behavior analysis, or ABA therapy. ABA has solidified its place in the autism industry as the “gold standard” with an “evidence base” as being effective for “treating autism.”

But being autistic is a neurotype defined by behaviors that reflect having a brain that is wired with an uneven distribution of resources compared to non-autistic peers. How those resources are distributed, neurologically, spans and presses against the outer bounds of what it means to be human. We exist in the full range of human diversity.

So what ABA is really claiming is that it treats humanhood.

Autism isn’t a disease. There’s nothing about being autistic that is unique to only autistic people. So, a therapy that claims to “treat autism” can only truly be an ongoing science experiment on each individual– regardless of how varied the person’s needs are.

And that’s precisely what ABA is… trying things until something “sticks” to make someone’s behavior fall in line with a behavior plan a behavior therapist decided was appropriate for their client.

ABA succeeds only as a perpetual marketing ploy for its own beneficiality. To autistic people, it is the emperor’s new clothes.

ABA remains relevant because people ignorant of autism and neuroscience– and basic common sense– have leaned on ABA like a strongman, or a leader who rules by exercising force and violence.

That’s exactly what happened with the repealed ban on electroshock torture. Although 99%+ of the population can acknowledge that it’s sadistic and evil to strap disabled children to a backpack and the equivalent of a car battery and shock them for expressing emotion, even the US government doesn’t have the power to stop the ABA industry from colonizing all things related to autism and torturing disabled people.

If not torture, then what?

How about access to age appropriate education and communication access that is appropriate for people with movement disorders?

Some of the same people who are in the ABA political power stronghold that empowers the Judge Rotenberg Center to continue the use of electroshock are among the same agents who are most outspoken against communication rights for nonspeakers.

When every apraxic autistic nonspeaker gets access to communication that works for them, they immediately spell about two things:

  1. How perpetually frustrated they were without access to reliable communication, and
  2. How their bodies operate without the consent of their minds.

They write about how they cannot stop their bodies from doing things like smelling someone’s hair, stimming like they are at a rock concert, or picking their skin.

Of course, with this knowledge from essentially every apraxic nonspeaker who has gained access to reliable communication– that they can’t control their bodies– drives home how abjectly cruel it is to punish nonspeaking autistics for movements and “behaviors” outside of their control.

The majority of people who are subjected to electroshock torture are minimally-speaking or nonspeaking.

When the behaviorists at Judge Rotenberg Center say, “Nothing else works,” the immediate response should be, “Have you tried giving the children and adults access to communication that works for apraxic autistics?”

The answer to that question is that they haven’t, because it’s not “evidence-based,” and the reason it is not “evidence-based” is because the ABA lobby has actively suppressed communication rights and called forms of communication access “pseudoscience” since the 80s.

Simultaneously, these detractors have actively bullied any university that tries to do research on large-motor communication teaching methods like facilitated communication (FC), rapid prompting method (RPM), and spelling to communicate (S2C). These behaviorists even berate and strongarm news outlets and universities for featuring nonspeakers in media and conferences.

They collaborate to sabotage nonspeakers on Wikipedia.

FC, RPM, and How Wikipedia Became Complicit in Silencing Non-speaking Autistics

These entitled and wildly powerful behaviorists demand a monopoly on autistic bodies. They demand to regard autistic people as if they are rodeo bulls needing to be broken in. They literally are using devices similar to cattle prods on autistic people to herd and corral their behaviors.

Meanwhile, the “success stories” they roll out and put on display are similar to the success stories from students of S2C and RPM. The material difference is that JRC required electroshock and an institution, and RPM required a letterboard, respect for people with movement disorders, and age-appropriate instruction.

This article by Rithik Sinhasan, 17-year-old nonspeaking autistic highlights how before he had access to RPM, he couldn’t travel by plane. Now he wants to be a travel writer:

Real Progress Takes Time, So Don’t Give Up

In this article, Tejas Rao Sankhar, a nonspeaking autistic author, talks about how he got half-way up the ramp boarding a plane, but his body would not cooperate to make it to the top.

Airplanes and the Autistic

In this article, Philip Reyes, a nonspeaking autistic author who learned to spell to communicate, talks about his life before RPM and after. You can see a video of his progress in it:

The Cage

This autistic contributor, Randy Vance, used the timely metaphor of being a dog with a shock collar to talk about his experience with non-autistic people in his life being controlling and punishing him until he died of a broken heart.

Creative: Hearts of Flesh and Stone

Philip Reyes talks here about being a nonspeaker and how his body can’t always carry out instructions from his brain:

Top 10 Things You Should Know About Apraxia According to a Nonspeaker

In this article from Trevor Byrd, a nonspeaking teen author, he writes about how he gave himself a haircut against his will:

Put Down the Scissors

In this poem from 13-year-old nonspeaker Anantha Krishnamurthy talks about the recent heatwave and how non-autistic people got a temporary feeling of what it’s like to be autistic and dysregulated every day:

Poetry: Heat

Here, nonspeaking teen Trevor Byrd talks about how life was before having access to communication that worked for him and how he couldn’t even express an opinion as simple as that “hockey rules” without communication access:

Hockey Rules and Other Opinions

In this amazing piece, Posy Taylor, young adult nonspeaker, talks about the rooms in her mind and how communication access has given her an avenue to express how her mind works:

The Hidden Rooms in my Mind

In this article, Chris Finnes, apraxic nonspeaker, writes about how society had it so wrong in thinking that he was so much less capable that he languished in frustration without an age appropriate education:

We are capable and deserving of an education

In this article, Matt Crittendon writes about the joy he experiences now that he has access to the right kind of communication so that he can interact with peers.

The Joy of Communication

In this breathtaking article from Tito Mukhopadhyay, the son of RPM’s founder Soma Mukhopadhyay, he writes about his inner life removed from society’s norms and boundaries:

From Up Here by Tito Rajarshi Mukhopadhyay

Tito was brought to the US in 2000 by Cure Autism Now (later, Autism Speaks), so they could study how a nonspeaking “severe” autistic could actually communicate and learn age-appropriate material.

So why isn’t isn’t world excited about communication rights?

Because the same people who have worked for decades to paint RPM and other similar methods of spelling to communicate claim that it is “pseudoscience” and not “real” communication.

These behaviorists have also maintained that sensory processing disorder doesn’t exist.

They do this because the entire industrial behavior complex depends on dehumanizing autistic people and claiming that they need to be broken into better behavior. If autistic people communicate what they need, it becomes harder to see them as products or rodeo bulls needing to be broken in.

To date, zero nonspeakers who have gained access to communication that works for them have advocated that they simply needed to be tortured with electric shock to shape their behaviors.

At the cornerstone of RPM and S2C, spellers have access to a communication and regulation partner (CRP) who helps them to stay on task and manage dysregulation. Their sensory needs are respected and their competence is presumed. This has dramatically improved the quality of life for autistic people with high support needs and their loved ones.

Sensory dysregulation is treated with torture at the JRC.

So when Judge Rotenberg Center and behaviorists claim nothing else works, what they really mean is they’ve actively suppressed what does work in order to claim a monopoly on autistic bodies, the bodies of terrified children & young adults living with severe sensory dysregulation and deprivation of access to supports and communication access.

One young girl, a deaf-blind nonspeaker at Judge Rotenberg Center, was shocked repeatedly because she was moaning, but she just had a broken tooth and needed dental care.

How can we allow nonspeaking children to be punished with painful electroshock for having a toothache?

We allow it to happen because this top tier of privilege in the ABA realm is too politically-connected and too well-funded to counter. Everyone but the most sadistic know how wrong it is to use electroshock torture, but they can’t make it change? Why?

Because white patriarchal and wealthy privilege structures are so entrenched in United States politics that the 99% of the population who would find shocking profoundly disabled people for being disabled horrifying and unjustifiable have zero say.

The majority of people who are subjected to this treatment are nonspeaking and Black or Brown.

It is not enough to pretend that people with high support needs can be helped no other way than corporal punishment. We already know better and have for decades.

This is a catastrophic failure of human rights caused by putting the fate of autistic lives in the hands of the self-declared experts behind the behavior industry. These behaviorists who reject any science that explains behavior neurologically. They view and treat humans as nothing more than their observable “behaviors.”

The behavior plans and behaviors used to justify shocking autistic people are for behaviors most autistic people do– behaviors that most people do when they are distressed.

Lydia X. Z. Brown has published a transcribed version of former JRC resident, Jennifer Msumba’s, behavior plan. Below is a screenshot of that plan. For the full transcription of the image, plus an explanation of the abbreviations, visit Brown’s website, Autistic Hoya.

Image and blog exposing JRC’s abuses can be accessed here.

So many of the behaviors on the list were for behaviors that help autistic people to regulate their sensitive nervous systems: pressurizing (covering) eyes or ears longer than 3 seconds, self-restraint for more than 5 seconds (wrapping hands in clothes or pulling on clothes), repetitive hand movements in front of face, and saying “No.”

Autistic people are physically and psychologically tortured for saying no.

Community Feedback:

NeuroClastic has an active survey capturing community feedback to measure the feelings of our community– autistic people and non-autistic allies, family members, professionals, and allies.

You can read all of the responses here, but suffice it to say, the community is horrified and disgusted at the continued practice of electroshock, a practice that the United Nations has deemed torture.

In our live survey, and through our social media, we have heard from one sibling whose brother was “treated” with skin shock punishment. She reports he never recovered and ended his life before age 40 by kneeling in front of a train.

There are many autistic people who were “treated” with corporal punishment who never made it to age 40, but they “seemed fine” or performed as “less autistic” after being shamed, scared, and beaten into compliance and learning to fly under the radar.

How can any of us feel safe for ourselves or our children when we are subjected to state-sanctioned torture?

We can’t.

The results of our current survey demonstrate that our community and our loved ones are being actively traumatized by JRC’s policies, even if we are not actively being shocked. The knowledge that the most “free” nation in the world cannot even protect its most vulnerable against corporate colonialism.

Secondary Trauma for the Autistic Community

Autistic people understand autistic behavior and communication. We understand how meltdowns feel from the inside, how it feels to live with extreme sensory trauma, and how to support autistic self-determination.

The proponents of shock torture from JRC have argued that they have thousands of pages of documentation that were being ignored. The autistic community has produced millions of pages of documentation that has been ignored. Our allies have produced millions of pages of information that are being ignored.

We are summarily dismissed as “not evidence based.”

This is because the behavior industry has no respect or regard for our humanity, for neuroscience, or for psychology. They want to colonize our bodies and our behaviors.

Almost every member of the autistic community objects to applied behavior analysis. We report that it traumatizes us, and we’re gaslighted and told there’s no “evidence base” to support that our trauma exists.

Autistic people can see the whole patterns of oppression & abuse that permit this kind of treatment. It is heavily entrenched in capitalism, ableism, and white supremacy.

We are pattern thinkers who have experienced attitudes from authority figures who regard us as subhuman our whole lives. We know how it feels to be stripped of our dignity and punished for what we can’t change. That is the gist of autistic responses to our community survey.

Whatever it takes to get an immediate ban in place on this barbaric procedure needs to happen, now.

Further Reading:

Chaitofu on Twitter has put together a linktree with resources, information, and action items regarding the #StopTheShock campaign.

Related Articles

2 Responses

  1. Makes me want to go over there and electrocute the perpetrators! See how they bloody like it! I hope a special circle of Hell is reserved for scumbags who think it’s OK to shock people just because their brains are different and I hope they rot there sooner rather than later! An absolute disgrace to humanity!

  2. This leaves me almost speechless with horror and shock. Please someone wake me up from this world where people do things like this to other people. But still, I’m glad you’ve made me aware of this.

Talk to us... what are you thinking?

Skip to content
%d bloggers like this: