Sesame Street, Autism Speaks, and why Autistics have had enough

Sesame Street, Autism Speaks, and why Autistics have had enough

Sesame Street has been an important piece of countless childhoods for 50 years. Characters like Elmo, Big Bird, Grover, and Cadabby resonate well with children and parents love how educationally-focused the show is for little ones.

In October of 2015, Sesame Street debuted their first-ever autistic muppet- Julia in an online storybook. Since then, Julia has finally appeared on Sesame Street in April of 2019. Parents of Autistic children and the “Autism Community” (comprised mostly of non-autistic family members of autistic people/children) have rejoiced at the idea of Sesame Street teaching young children about autism.

The autistic community (comprised primarily of autistic people), on the other hand, was a bit more apprehensive. After anxiously waiting to here who would be consulting on Julia, autistics were somewhat frustrated to hear that Autism Speaks but overall elated to learn that the Autistic Self Advocacy Network (ASAN) was also partnering with Sesame Street!

The Autistic Self Advocacy Network is an advocacy group run by autistics, for autistics.

Autism Speaks, on the other hand, actively contributes to the discrimination that autistic people face, use language that autistic people do not prefer, use outdated and harmful symbols for autism, and encourage and support parents who abuse and even kill autistic children and adults.

Despite the partnership with Autism Speaks, the autistic community remained optimistic that ASAN’s void would be heard, and with it, the voices of autistic people.

Sesame Street has made some headway in terms of autism acceptance via Julia, and it would be unjust for us to skim over them:

Unfortunately, all of those wonderful things cannot outweigh the damage that has been done by Sesame Street and Autism Speaks.

Even before the most recent discretion (which will be addressed below) Sesame Street was getting things wrong.

For starters, a partnership with Autism Speaks is deeply upsetting.

“An organization that treats autistic people as tragic burdens doesn’t deserve equal consideration when you’re crafting videos and books that are trying to help promote the acceptance of autistic children. “

Sarah Kurchak

Sesame Street also uses Person-First Language to describe autism (“person/child with autism”, “has autism”, “on the autism spectrum”) rather than Identity-First Language (“is autistic”, “autistic people/person/child”), which is preferred by the overwhelming majority of autistic people (as indicated by several polls and surveys.)

Several of the digital stories and videos featuring Julia were less than stellar, often bordering on offensive.

But last week, Sesame Street rolled out an ad featuring Julia that advertised Autism Speak’s Early Screening for Autism and 100 Day Kit.

” Until this summer, the content Sesame Street produced showed parents that their autistic children could live great lives, and taught autistic and neurotypical children ways to become friends. Through this approach, See Amazing successfully encouraged the inclusion of autistic children in their communities, and had a widespread positive impact.”

– The Autistic Self Advocacy Network

The Early Screening and 100 Day Kit is damaging to the autistic community. Rather than trying to summarize what ASAN has already said perfectly, I’ll quote them directly:

” The 100 Day Kit encourages parents to blame family difficulties on their autistic child (“When you find yourself arguing with your spouse… be careful not to get mad at each other when it really is the autism that has you so upset and angry”) and to view autism as a terrible disease from which their child can “get better.” It recommends compliance-based “therapies” and pseudoscientific “autism diets,” but fails to educate families about communication supports. It even instructs parents to go through the five stages of grief after learning that their child is autistic, as they would if the child had died. “

– The Autistic Self Advocacy Network

Before making their statement and ending their partnership with Sesame Street, ASAN says they had repeatedly expressed concerns about the harmful nature of the 100 Day Kit and listed consequences at length.

Despite multiple warnings from ASAN, Sesame Street opted to go ahead with the promotion anyways.

When ASAN’s partnership with Sesame Street ended, so did the undying support of thousands of autistics globally.

Sesame Street has spent fifty years with a precise goal to impact actual lives and communities; it would be ignorant to deny the impact that promoting harmful rhetoric will have on autistic people.

Sesame Street introduces new Muppet, Julia, who has autism on the Today Show. March 27, 2017.

To reach out to Sesame Street to ensure that autistic voices (and advocate voices) are heard:

Let autistic voices be heard. Be loud, be vocal. Show Sesame Street that we will not be bulldozed by ignorance in favor of Autism Speaks.

“The See Amazing initiative was groundbreaking because it offered an alternative to these stories. It let families know that their autistic children are amazing, can live happy lives, and are deserving of love. Now, Sesame Street has decided to let See Amazing become just another vehicle for Autism Speaks to spread the same old toxic ideas. “

– The Autistic Self Advocacy Network
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why professional behavior analysts are leaving the field

why professional behavior analysts are leaving the field

As more and more information becomes available about the dangers of ABA, behavior analysts and ABA providers are beginning to abandon their jobs for less harmful alternatives.

Behavior Analysts are often minimally trained individuals; certifications are available but schooling is not required.

“My official title was ‘Behavior Technician’ which in itself is really telling. I was hired off the street with no background in child development, no knowledge of autism or ABA, and no experience working with children, let alone autistic children. I. Literally. Did. Not. Know. What. Autism. Is. And I wouldn’t find out what autism is in the years that I worked there either. “

– Birdmadgrrl

Because behavior technicians/analysts do not often know what kind of harm they are causing to children, and lack a formal background of education in disability, healthcare, child development, or psychology, most of them are lead to believe that they are helping autistic children with their jobs. And sometimes, the children even appear to enjoy the program. Parents will sing praises of their beloved behavior technician and to the behavior technician, this feels like a job that makes a change in the world.

So why are behavior analysts leaving?

We know that ABA hurts autistic people; that it’s origins are abysmal, that behavior analysts violate the consent of the children they work with, that ABA stops children from self-regulating, that ABA uses aversives, and that it is very intensive for children involved, and the ABA has been linked to PTSD.

When behavior analysts/technicians leave the bubble of ABA and get exposed to the autistic community, disability rights, or child development, they often come to a tough realization- that everyone outside of ABA… hates ABA.

In the lengthy process of coming to terms with what they have unwittingly done, and unlearning the abusive methods and harmful ideology that they have learned, most former ABA providers have a lot of things to say about the field they once believed in.

Former behavior analysts have come to me repeatedly on social media to share their experiences- every one of them has confessed that they witnessed child abuse every single day that they worked in the field.

” We learned things like ‘planned ignoring’- how to ignore a distressed child until they comply with your demands, how to ‘properly’ restrain a 2-6 year old child, how to not show empathy when a child has a meltdown- that would only reinforce the behavior and we can’t have that, how to ‘desensitize’ a child to painful or uncomfortable sensory experiences (hint; they aren’t actually desensitized, just forced to endure it until they successfully and consistently don’t react), how to change the environment- not to make it more accessible, but to make it more conducive to compliance (ex; feed the child salty chips so that she’ll drink more water so that she’ll use the potty chair at the designated time.)”

– Birdmadgrrl

Former ABA providers speak about how they questioned whether behavior modification via operant conditioning was helpful or harmful, but were often dismissed because ABA is considered the “only evidence-based treatment for Autism” (Nevermind that the evidence is just proof that children will comply if they are faced with aversives, and that autism is not a disease to be treated.)

“Would you comply with demands if tortured enough? Probably. Does that make it effective? Well I guess that depends on what your goals are. If your goal is to gain compliance (which is the goal of ABA) then yeah I guess it’s effective at that goal, but that’s a pretty shitty goal to have, and at what cost?”

– Birdmadgrrl

The primary reason that most ABA providers leave the field is simple: They began listening to autistic people that described the ABA they experienced in childhood as abusive and harmful. They connected the experiences of those autistic people to their own workplace, and the abusive way they were instructed to treat their patients.

If autistic people are the experts on autism, and they’ve been tortured and abused and are living with PTSD… How could this “treatment” possibly be acceptable?

Former ABA therapists often describe an immense struggle to “let go” of their jobs and switch to a less harmful mindset, because learning that you are abusing people that you care about is not easy. The important thing is to recognize the harm and move forward, leaving ABA behind.

“I thought that because I cared about the kids’ well-being, because I had a strong desire to help them, everything I did must therefore be in their best interest. In my mind, it gave me a special immunity to making mistakes. Caring meant there was no way I could be hurting them. I now realize how dangerous this idea really is. I’ve hurt many people I care deeply about. Just because you care about someone or have good intentions does not guarantee you’re doing the best thing for them. “

– Socially Anxious Advocate

Additional readings from former behavior analysts who have left the field:

Aggression: can ABA help?

Aggression: can ABA help?

One of the most compelling complaints from parents who are seeking treatment for their autistic children is that the children are aggressive and harm themselves or other people.

Can ABA help? Short answer: No.

autistic meltdowns

Autistic meltdowns are an inevitable part of autism. We can reduce them, but we cannot eliminate them altogether. Being autistic means that a person will experience meltdowns at least a few times, if not more often than that, throughout their lives.

Autistic meltdowns are the culmination of several frustrating events and a catalyst event that pushes the autistic person over the edge. Meltdowns look differently on every autistic person and may even vary based on any number of things; they may look like hitting, kicking, crying, or throwing things.

Sometimes, an autistic child may hurt themselves or another person during a meltdown, but it is not deliberate. During a meltdown, autistic people cannot control their behaviors until they are calm.

The best way to help an autistic person move through a meltdown is to try to reduce any factors that may be distressing them. Meltdowns happen because a person is in distress, usually due to overstimulation.

aggression as a means of communication

On the other hand, behavior is communication, and we should be listening and trying to understand what each communication means. Aggression as a form of communication is an indication that something is wrong, and as parents and caregivers, we should seek out the source of distress and help to resolve it.

When children who are already experiencing distress are exposed a therapy as abusive and harmful as ABA, they are trained to tolerate trauma and upsetting stimuli, forcing them to bottle up their emotional response until they inevitably explode.

“… if the ABA has done what it set out to do, your child has lost the only channel of communication available to them for expressing their pain and suffering in hopes of getting help with their distress.”

Maxfield Sparrow

Seeking out what is upsetting a child and trying to remedy it is almost certainly a difficult task, but nobody wants their child to suffer.

“Don’t take away your child’s voice; take away their suffering. ABA is a cruel response to aggressive behavior. Meet that behavior with love, calm, support, and an investigative search for the source of your child’s struggle instead.”

Maxfield Sparrow
ABA vs Speech Therapy

ABA vs Speech Therapy

Kid Sense

Language acquisition and establishing a means of communication are key pieces of most ABA therapy. Many people enroll their children in ABA therapy specifically because they are nonverbal or minimally verbal and they have an immense desire to be able to communicate with their children.

Verbal speech is not the only way to communicate with children, but it can be an important way for many families.

It’s true that being unable to communicate with peers, family members, teachers, and medical professionals can set a child back. How can we expect children to socialize if there are significant barriers preventing them from communicating with others? Simply put, we can’t. And despite that verbal speech is not the only manner of communication, many people communicate almost exclusively via verbal speech, making the world inaccessible to those who don’t use it.

Of course it is beneficial for us to advocate for a more accessible world… But sometimes, verbal speech is important. So how do we foster the development of verbal speech in the best and least harmful ways?

ABA’s role in language acquisition

ABA therapists have no formal training in language or speech.

ABA typically aims to foster “correct” speech and an increase in “mean length of utterance” while attempting to reduce echolalia, which is repetitious speech.

Unfortunately this undermines the use of echolalic speech as a tool for the acquisition of language.

Besides the confusing goals and measurements for language acquisition in ABA, there’s a bigger issue at play.

Teaching children how to speak by forcing them to sit still, make eye contact, and focus their attention fully on an adult showing them flashcards is not ideal. Teaching children language that is relevant to them while they behave normally is a far superior method.

What’s more? ABA therapists may punish a child for being unable to utilize verbal speech “correctly”- that is, if a child cannot say the right word at the right time, they may be spanked, verbally scolded, or worse.

Speech Therapy for language acquisition

Unlike behavior analysts, Speech therapists (or speech language pathologists) go to college and get master’s degrees wherein they learn to teach and encourage speech in effective ways.

Speech therapists will work with children and their existing forms of communications as they attempt to foster verbal speech.

Speech therapy can help children with many speech-related issues, and even some that don’t seem speech related at all:

  • Difficulty articulating words
  • Stutter
  • Incorrect volume (too quiet, too loud)
  • Incorrect pitch or inflections
  • Others problems with the mouth (including feeding)
  • Difficulty understanding language that one hears
  • Difficulty expression oneself
  • Socially inappropriate uses of language
  • Dyslexia
  • Dyspraxia

Speech therapists use many different formats to work on these issues, including modeling or play-based therapies, articulation therapy, and even feeding therapy among other methods.

Alternative forms of communication (to accompany speech therapy, or stand alone)

Parents are often desperate to improve their child’s ability to communicate in their language- speech- all the while forgetting that nonverbal communication exists.

Autistic people who are nonverbal or minimally verbal do communicate, just not with sentences and phrases. Behavior is communication, and there exists an abundance of other resources to foster both verbal and nonverbal communication in children.

Children can learn sign language or use an Augmentated and Alternative Communication (AAC) device to communicate more effectively with others and using a better nonverbal method to communicate may even foster the development of speech and language.

can ABA “bring back” normalcy?

can ABA “bring back” normalcy?

Bold claims of the ability to turn an autistic child normal or make them “less autistic” are among the most popular reasons that parents choose ABA.

There are many issues with this argument- firstly, a child who is autistic has always been autistic. It’s inaccurate to imply that they could “return to normalcy” when they have always been and always will be autistic. Secondly, autism is not curable, and even Lovaas himself cautioned that recovery is not a reasonable expectation (despite trying to assimilate children to behave as typically as possible.) Third, there would be no benefit to being less autistic, even if it were possible.

However, the Autism Spectrum is not linear and there is no “more” or “less” autistic. An autistic person’s entire brain works differently, not just part of it, and you can’t make part or all of their brain work like their allistic counterparts.

Throughout literature on ABA one will see phrases like “correct behaviors”, “desired behaviors”, and “appropriate behaviors”, which reinforce the idea that ABA can bring an autistic child back to normalcy.

How do we define normal? The distinction between normal and abnormal is certainly not black and white. Different cultures have different social expectations and typical behaviors, there is no universal sameness for which we should strive; forcing autistic children to blend into the societal norms of allistic people does not serve to do them any benefits.

Donald King

Another closely related reason for subjecting children to ABA is the belief that ABA will somehow improve the quality of life of autistic people.

“People seem to think that if you act normal, you must feel normal.”

Carol Millman

For autistic people, acting in a way that others perceive as normal is unnatural and unpleasant- a necessity at times, but exhausting and an inevitable step toward meltdowns for most autistic people.

“Non-autistic people believe that ‘normalcy’ is a fundamental need; indeed, a stated goal of ABA is to make the autistic child ‘indistinguishable from [neurotypical] peers.’”

Carol Millman
the importance of stimming

the importance of stimming

Many non-autistic people have a lot of misonceptions about “stimming” (also called self-stimulatory behaviors). Some of them believe that stimming is a result of boredom, while others believe that autistics stim for fun… and yet others are still hopelessly confused as to why autistic people behave so “strangely.”

Everyone stims a little bit, and its true that in some cases, stimming can curb boredom or bring happiness.

But when autistic people stim, it usually serves a deeper purpose.

Stimming for autistic people is a means of self-regulation. It helps autistic people learn, feel comfortable and safe, and handle their emotions.

Stimming is not meant to collect a child’s boredom, it is meant to be a built-in self-soothing mechanism that helps with emotional regulation and learning.

“In an initial ABA session, a therapist might enforce the suppression of an autistic client’s self-stimulatory behaviors, which is merely a visceral reaction to seek meaningful change in one’s environment in an effort to prevent sensory overload.”

C. L. Lynch

Forcing a child to stop stimming is effectively removing their ability to comfort themselves in a stressful situation- and ABA intends to stop stimming altogether.

Stimming is a critically important behavior that should not be stopped, and any therapy that exists to stop it is removing a child’s ability to cope with stress and increasing the likelihood that they will have a meltdown simply to make their behaviors less unusual.

ABA and PTSD

ABA and PTSD

Ink and Daggers

If traumatized autistic voices are not enough to make people understand the truly horrible ramifications of ABA therapy, perhaps a proven link between ABA and Post-Traumatic Stress Disorder (PTSD) is.

In a recent study, 46 percent of participants exposed to ABA met the diagnostic criteria for a diagnosis of PTSD.

The ABA exposed respondents also have a substantially higher probability of PTSD symptoms when compared to those not exposed to ABA.

“Respondents of all ages who were exposed to ABA were 86 percent more likely to meet the PTSD criteria than respondents who were not exposed to ABA.”

Henny Kupferstein

In particular, children receiving ABA have a nearly 50% chance of meeting the diagnostic criteria for PTSD within only four weeks of beginning ABA.

ABA undeniably increases the risk of PTSD in autistic people, who are already more likely to get PTSD as a result of trauma because of the specific genetic makeup and brain processes seen in autism.

The most chilling takeaway from this study is how rapidly an autistic child receiving ABA may develop PTSD.

“The Average 18-month-old autistic child who is exposed to 40 hours of ABA per week will be expected to surpass the severe threshold of the PTSD criteria within six weeks… The average three-year-old autistic child who is exposed to 20 hours of ABA per week will be expected to surpass the severe threshold of the PTSD criteria within five months of ABA exposure…”

Henny Kupferstein