I promised in episode one of the Autism and The Human podcast that as time went on, it would be made increasingly clear what I meant by “The Human.” Today’s episode, “Neurodivergency in the Neoliberal Era,” should go a long way towards accomplishing this. In the interest of narrative flow, I will not read out all the in-line references. However, these will be included in the transcript on my WordPress blog, along with the Works Cited. Today’s episode will discuss ableism, economic oppression, and child abuse.
If you don’t have the spoons to hear about this today, please listen to something else.
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Runswick-Cole (2014) said that “Neoliberalism” underpins a policy agenda that seeks to restrict the role of the government, instead increasing the focus on the freedoms and rights of individuals. Goodley (2011) said neoliberalism objects to the government excessively intervening in the lives of individuals and families. Richardson (2005) said neoliberalism is determined to transfer public services and functions to the private sector.
Neurodivergence within the Neoliberal Economic System
In societies governed by neoliberal ideals, good citizenship requires individuals to contribute to the economy through labour and commerce. Neoliberal principles label people as burdens if they take money from the various social programs they believe should be limited or eliminated. Many autistic people require assistance from social programs, causing them to be labelled as burdens in a neoliberal capitalistic system. In addition, neoliberal capitalism requires individuals to contribute to the economy through labour and commerce as an exercise of full citizenship. Autistic people possess limited purchasing power, which causes them to be treated as if they lack full citizenship within neoliberal capitalistic systems, like most economies in the global north. Freire (1998) said, “one who suffers any of the discriminations…does not enjoy the entire exercise of citizenship as a peaceful and recognized right. On the contrary, it is a right to be reached whose conquest makes democracy grow substantively. Citizenship implies freedom” (Friere, 1998).
On the one hand, neoliberal economies consider autistic people burdens, since they cannot participate in the expectations of citizenship in all the ways a neoliberal economy demands. Following Freire’s logic that those discriminated against are stripped of their ability to exercise the full extent of their rights and freedoms, autistic people would subsequently be considered to be less than complete citizens, with less protection under the law.
As I have said in other episodes of the Autism and The Human podcast, Maxfield Sparrow told us that in the United States of America, thirty-five percent of autistic eighteen-year-olds go to college. Of course, this would only consider those students identified as autistic. Of those who achieve a university degree, only fifteen percent end up with anything approaching stable employment. That leaves 85% of college-educated autistic adults in the United States of America who end up unemployed. Sparrow (2018) said that only 4.5% of the general population at all education levels are unemployed. I imagine that statistic has shifted since the pandemic. On the other hand, I find it hard to believe it’s eclipsed the 85% statistic for autistic Americans.
Sparrow (2018) explained that unemployment rates for disabled Americans don’t reflect those who are not actively looking for work or have stopped trying. This would equally impact the unemployment statistics for allistic and autistic people. Sparrow emphasized that even leaving room for this consideration, the unemployment rate of autistic Americans is higher than any other group of disabled people in America.
McGuire said that although neoliberal capitalism expects citizens to be able to commodify their time, many autistic adults cannot do this. They also cannot claim to possess the intrinsic commodity of time the way children could because, according to statistics, autistic people die younger than the general public. McGuire (2013) said, “If time is a commodity—if it has become a ‘thing’ that can be and is bought, sold and circulated—it is, perhaps, the quintessential commodity insofar as without it no other commodity is within reach. And so, under neoliberalism, time becomes a kind of capital” (McGuire, 2013). Since autistic people are often unable to commodify their time and have limited ability to buy things due to having a fixed income, the last thing they could represent that holds any value in a neoliberal system is a “Product.” Timini, Gardner, and McCabe (2010) said, “the rise in the number of people labelled with autism is linked to the demands of the neoliberal market system. They suggest that the requirement to sell goods and products in the marketplace includes having to sell your ‘self.’ Those who are unable to do this well are then seen as a ‘problem’ for (medical) experts who the state appoints to help turn the person into a productive citizen” (Timini, Gardner & McCabe, 2010).
You are probably asking yourself how autistic people are turned into products. It starts with autistic children. Autism Speaks places a metaphorical ticking clock over the heads of autistic children. They release material designed to terrify parents of autistic children into believing there is a finite window of time when you have an opportunity to rescue your child from the clutches of autism. You could help your child be indistinguishable from their allistic peers if you act fast. You know, by masking. It makes me think of Sarah Kurchack’s book, “I Overcame My Autism and All I Got Was This Lousy Anxiety Disorder.” Autism Speaks created a public awareness campaign in 2007, highlighting the sense of urgency Autism Speaks aims to create. McGuire (2013) said Starbucks coffee drinkers might have seen the following from Autism Speaks on the sides of their cups in 2007:
Every 20 minutes—less time than it will take you to drink your coffee—another child is diagnosed with autism. It’s much more common than people think, with one out of every 150 children diagnosed. Learn the early warning signs of autism, and if you’re concerned about your child’s development, talk to your doctor. Early intervention could make a big difference in your child’s future (Autism Speaks, 2007).(McGuire, 2013).
This collaboration between Autism Speaks and Starbucks had multiple ties to time. For starters, coffee is often something people drink in the morning to start their day. They drink it to wake themselves up, so they can use their time effectively. When they start to drag during the day, people will often drink coffee to give them a boost so they can keep maximizing their day. Maximizing our day in a neoliberal capitalistic economy generally refers to the labour we contribute and the products and services we consume. McGuire described the many ties between the campaign and the concept of time, including how Starbucks cups are disposable. They are designed for on-the-go people who are busy maximizing their time. Buying coffee isn’t considered a waste of time within a neoliberal economy because consuming products and services are the foundation of a neoliberal economy. How does this circular concept of time, productivity, products, and consumption connect to what Autism Speaks promotes? Well, as I mentioned already, Autism Speaks pushes the idea of there being a ticking clock over the heads of autistic children. They want parents to allow their children to become the products of the Applied Behaviour Analysis industry, among others. The implication is that if they don’t let this happen, their children will grow up and become the products of the social welfare system, among others.
Controlling the Discourse
It is common in England to see the front pages of newspapers talking about “Benefit Scroungers.” Some of the media there encourage the general public to attack or treat with suspicion anyone with disabilities that aren’t immediately apparent and seen to be affecting every part of a person’s life. Autistic people are put in a position of being constantly scrutinized if they need help from social safety-net programs. The concept of “Meritocracy,” which goes hand-in-hand with neoliberal capitalism, worsens things. It convinces people that if autistic people cannot contribute their labour to the economy and cannot buy products and services, they are a burden. What they bring to the neoliberal economy merits scrutiny, adversity, and poverty. Autistic people in situations like this find themselves having to put their disability on display, so they don’t get constantly attacked for faking disability; it’s ironic in the worst way. If they take pride in their neurodivergent identity, they are accused of not doing their part in trying to overcome autism, as if that is even a thing that is possible.
Runswick-Cole (2014) said the following:
Us, then, are the able, engaged citizens, or the ideal neoliberal type, who actively engage in and contribute to the neoliberal project. Occupying a liminal space are the compliant citizens, who are judged to occupy a ‘state of exception’ (Stone 1984, 4); they admit their ‘handicap, social stigma, dependence, isolation and economic disadvantage’ (1984, 4) and therefore may benefit from the politics of redistribution and welfare benefits. These engaged compliant citizens are then pitted against those who fall outside the categories of ‘engaged’ and ‘compliant’…. By refusing the ‘handicap’ model of autism, and arguing for a ‘difference’ rather than a ‘disorder’ narrative, the neurodiversity movement muddies the question of whether people with autism can, in neoliberal terms, rightfully occupy a ‘state of exception” and continue to receive the benefits this implies.”(Runswick-Cole, 2014)
“Autism Advocacy” controls the discourse, overwhelming “Autistic Advocacy.” Allistic voices dominate Autism Advocacy. Many of these voices belong to parent groups and corporations. Actually autistic voices in the neurodiversity paradigm movement find themselves easily outnumbered and effectively silenced by those in autism advocacy. Autism Speaks has been the most visible and overpowering of the corporations that are part of autism advocacy. It is right in the corporation’s name that they would prefer the general public think of autistic people as unable to speak for themselves. Autism Speaks, for you. Autism Speaks, over you. Autism Speaks would like people to believe you can’t speak for yourself. This leads to autistic people who can speak being told they aren’t autistic and non-verbal autistic people being ignored because their communication is not viewed as valid. Even if autistic advocates were not overwhelmed by the number of allistic people speaking over them, their voices would be rejected at the encouragement of the most prominent autism advocacy corporation, which conditions the general public to think about autistic people as lacking voices.
Dr. Walker (2013) said:
The most insidious sort of social inequality, the most difficult sort of privilege to challenge, occurs when the dominant group is so deeply established as the normal or default group that it has no specific name, no label. The members of such a group are simply thought of as normal people, healthy people, or just people—with the implication that those who aren’t members of that group represent deviations from that which is normal and natural, rather than equally natural and legitimate manifestations of human diversity.(Walker, 2013)
This distancing of autistic people from the label of “Humanity” reinforces what Freire said about those who experience discrimination being unable to exercise their citizenship rights. The debate around “People-First” versus “Identity-First” language is further evidence of autistic voices being considered irrelevant, since most autistics say they prefer identity-first language. Still, the preponderance of media discourse uses people-first.
In a sense, Autism Speaks arrived honestly at their belief that they are more qualified to dominate the discourse than autistic people. After all, it is what the “Professionals” have been teaching for years. Lovaas, considered the father of Applied Behaviour Analysis, certainly would have approved their business model. Dawson (2004) said:
Autistics cannot communicate. Autistics are incapable of learning from a typical environment. Autistic behaviours and interests are useless and wrong. These are some behaviourist claims at the core of autism-ABA. When this treatment was being developed, intelligence and autism—that is, autistic behaviours—were assumed rarely to co-exist.(Dawson, 2004)
Melnyczuk (2019) put it bluntly when they said, “Lovaas did not consider autistic children to be people until they had undergone his therapy to build a person” (Melnyczuk, 2019). In other words, their humanity was contingent upon consumption.
In a 2013 interview, the co-founder of Autism Speaks, Suzanne Wright, said:
In this country, one in 88 kids is afflicted with autism and it is one in 54 boys. I could not understand why the country wasn’t screaming… When I was growing up here in New York, one in 3,000 people caught polio and we had a national health crisis on our hands… The country pulled together and did something about it. Now we have had that with AIDS, and we did something about that too, as a country. With breast cancer, we took action, as a country, with prostate cancer, as a country. But the children with autism were not being heard—period.(Wright, 2013)
Every point of comparison Suzanne Wright made was with a deadly disease. In addition, the ticking clock I mentioned early was an oppressive presence. Also, Wright’s statement restated faulty statistics as facts. Knowing how little Autism Speaks listens to autistic people or encourages the general public to listen, it was troubling to see how Wright discussed the way autistic children are not heard.
Finding evidence that parental experiences of autism are prioritized over those of autistic people does not take much effort. The Caffeinated Autistic (2017) said the following on their blog in response to the notorious “I Am Autism” video from Autism:
The parents spend most of the time talking about what they cannot do with an autistic child. They cannot go out for coffee with their friends, they cannot do x, y, z, because their child is autistic. The conversation seems to be only focused on what the parents’ lives are like, and there is almost no discussion on how it feels for the autistic child themselves.(The Caffeinated Autistic, 2017)
An autistic self-advocate named Lydia Brown (2013) said:
Autistic and disabled activists, as well as our allies, have for years criticized Autism Speaks’ long history of dehumanizing rhetoric about autistic people, irresponsible financial practices, and unconscionable claim to represent autistic people without including any autistic people in their leadership—in direct contradiction to the principle of the disability rights movement.(Brown, 2013)
Endsley (2019) described Autism Speaks as “…the only large non-profit organization that is consistently met with public resistance from the group they claim to represent.” (Endsley, 2019). My personal experience can attest to the Autism Speaks practice of blocking neurodivergence pride movement activists on social media or publicly questioning their diagnosis to cast doubt on their right to speak about autism. It appears their attitude agrees with the “Sit-down and shut-up” attitude. If you can speak, then you should sit down and shut up.
Controlling money is another effective strategy to control the discourse around autism. Taylor (2007), a former parent-supporter of Autism Speaks, cited the following information from Autism Speak’s 2006 tax filing:
1. Three members of the Board of Directors received $2.5 million for their own organizations.
2. The President Mark Roithmayr, just received a 5 year contract for about $2,000,000 including bonuses with no prior background with autism.
3. The grants are primarily going to those representing institutions that are reviewing the grants. There is no indication that these conflicts are independently reviewed.
4. The location of this small and new foundation is in very expensive downtown New York facilities (2 Park Avenue) rented for $200,000 by the institution that is run by the Chairman of Autism Speaks.
5. An expense of a Private Jet plane for $57,000 was noted. This is very unusual for a new non-profit group.
6. The head of the scientific review received the majority of the funds for 2005 for his institution for a data base—almost $3 million (Taylor, 2007).
Adding to this examination of how Autism Speaks uses the money they fundraise, Elsa S. Henry (2013) said:
profit really sits at the center of what Autism Speaks gets from the terror and misinformation they spread about autism. 52 percent of the money AS raises goes right back into fundraising and exploitative awareness advertising. Fully 5 percent of their annual income in 2010 went into administrative costs and salaries, with some executives making over $400,000 a year. Almost all of the 44 percent they spent on research was devoted to efforts to develop a prenatal test and a cure for autism. Only 4 percent of the $50.2 million raised in 2010 went to support autistic and their families.(Henry, 2013)
The Role of Applied Behaviour Analysis in “Educating” Neurodiverse Children
Paul Orlowski defined hegemony as “…the ideal representation of the interests of the most privileged groups as universal interests, which are then accepted by the masses as the natural economic, political, and social order.” (Kirsten Kozolanka and Paul Orlowski, 2018) White neurodivergent people can claim privilege due to their race, and autistic males can claim it due to their gender, but the word “Privilege” doesn’t typically apply to most people on the autism spectrum. Autistic people consistently fail to advance the interests of the hegemony. Thus, they have been commodified as the products of a health and education system that adds wealth to Neurotypical people by providing services for autistic people. Applied Behaviour Analysis is the most common and lucrative form of treatment recommended for autistic children.
As previously mentioned, Lovaas is considered the father of Applied Behaviour Analysis. Dawson (2004) said, “Dr. Lovaas concluded from his work that autistics, under very specific conditions, may be able to learn like other organisms, that is by the principals of operant conditioning” (Dawson, 2004). Lovaas claimed that forty hours of rigorous ABA therapy could produce a child indistinguishable from their neurotypical peers. Runswick-Cole (2014) said, “Autism is bought and sold in the marketplace of academia in courses, conferences, research centers and published research (Mallett and Runswick-Cole 2012)…. Outside the academy, the autism industry is also flourishing. There is a huge commercial autism industry that trades interventions and treatment programmes, such as applied behaviour analysis…for profit” (Runswick-Cole, 2014)
Dawson (2004) said, “…when it comes to the test of ethics, to allotting autistics rudimentary ethical consideration, all sides and factions for and against ABA have persistently and thoroughly failed” (Dawson, 2004). Parents regularly resist ethical reviews of ABA practices because they believe investigations might interfere with their child’s ABA therapy, thus endangering their potential future as functional humans. There have been court cases to defend the right of ABA practitioners to abuse autistic children for profit. In 2016, Judge Katherine Field reaffirmed the right of Massachusetts-based Judge Rotenberg Educational Center to use physical aversives with students as part of their ABA therapy. Reporter Mike Beaudet (2018) said, “The decision was hailed by parents with students at the Judge Rotenberg Center” (Beaudet, 2018). Massachusetts Health and Human Services Secretary Marylou Sudders said to Beaudet (2018), “I think the use of aversives in very controlled environments for individuals who are extraordinarily high risk of harm to themselves or others—in a very controlled environment, there is evidence that it can interrupt the negative behaviour in order for you to introduce positives” (Beaudet, 2018). Seven children have died under Matthew Israel’s care (Brown, 2013). One has to question Sudder’s standards for a controlled environment.
Brown (2013) described some of the abuse faced by children at the Judge Rotenberg Center:
His methodology of treatment was predicated on techniques called aversive interventions—slaps, forced inhalation of ammonia, food deprivation, sleep deprivation, prolonged restraint, deep-muscle pinches intended to inflict maximum pain, and long-term seclusion…. In the early 1990’s, Israel had a brilliant epiphany—what if he were to use electric shock as an aversive?…The BRI invented their own device, known as the graduated electronic decelator, which is intentionally designed to be more powerful and more painful than a police taser.(Brown, 2013)
Most ABA providers no longer use aversives, but this has not transformed ABA into a non-abusive practice. Children are trained to ignore their bodies, feelings, and sensory reactions. They are being commanded to abandon coping mechanisms like flapping their hands, not for their benefit but the comfort of neurotypical people in their presence. Maxfield Sparrow (2016) said, “All those years of ABA therapy will have taught them that they are fundamentally wrong and broken; that they are required to do everything authority demands of them (whether it’s right or wrong for them); that they are always the one at fault when anything social goes wrong; that they get love, praise, and their basic survival needs met so long as they can hide any trace of autism from others; that what they want doesn’t matter” (Sparrow, 2016). These teachings lead autistic adults to suffer a higher than average rate of sexual exploitation and physical abuse by domestic partners. Lynch (2017) said, “They don’t think about the fact that 70% of people with ASD have experienced sexual abuse by the time they are college age” (Lynch, 2019). ABA is teaching neurodiverse children to be perfect victims.
If a person were to examine Lovaas’ evidence about the effectiveness of ABA, they would be forced to wonder why ABA would continue to get used if it did not include aversives. Further explanation is required to keep this statement from sounding like an endorsement of aversives.
Dawson (2004) said:
Autism-ABA would not have easily become an industry in the absence of Dr. Lovaas’ famous 47%…. 47% represents the best outcomes of Dr. Lovaas’ 1987 study, the 9 out of 19 pre-school autistic children in his experimental group who underwent 40 hours of ABA per week for two or more years. At the end of therapy they were reported to have recovered and became indistinguishable from their typical peers…. In a confluence of poor ethics and dishonest science, the autism-ABA industry has downplayed and even denied the importance of aversives in achieving the famous 47%. Dr. Lovaas’ 1987 study in fact emphasized the importance and effectiveness of aversives, the sole scientifically-proven active ingredient.(Dawson, 2004)
In other words, the only way to get the referenced 47% success rate is through the use of aversives. A tortured person will do almost anything to make the pain stop. It is the primary reason torture is no longer considered a valid way to extract reliable information. The same is true of ABA therapy, which uses aversives. Since the only way to get to the inflated success rate is through the torture of autistic children, it questions the validity of using ABA in any form.
In 1991 a group of researchers from Rutgers wanted to show that the application of aversives had adverse effects on ABA therapists. My first reaction was that the study seemed to be trying to prove ABA hurt “Humans” because they thought the proven record of post-traumatic stress disorder caused in neurodivergent patients did not count as a good enough reason to stop using the practice. The results of the study were disturbing. Dawson (2004) said, “They found that those applying severe aversives were happiest and reported less job-related stress and greater personal accomplishment. In fact, the longer they had been at it, the more personally accomplished they reported being” (Dawson, 2004). This is evidence that treating autistic people in dehumanizing ways causes ABA therapists to become inhuman. Dawson (2004) said, “This sort of science informs the autism-ABA industry’s omnipresent exercise of fiscal coercion, the cost-benefit analysis….all ABA-deprived autistics are a financial burden on society; all ABA-deprived autistics are lifetime liabilities; and all ABA-deprived autistics contribute nothing whatsoever to society” (Dawson, 2004).
As the neoliberal agenda makes in-roads in opening education to private investment, autism treatment is already a significant industry. Autism Speaks is the world’s largest autism advocacy organization. They have spent decades comparing autism to an epidemic and constantly reminding the public that time was running out for autistic children to have a chance at a future where they could be indistinguishable from their allistic peers. Systematic misrepresentation of statistical evidence has been implemented to make parents believe their children were doomed if they did not pay for forty hours per week of intensive ABA therapy. Autistic advocates who have tried to fight against the Autism Speaks-dominated discourse have had their voices silenced. These are some ways neurodiverse people are stripped of their freedoms and denied the exercise of their full citizenship rights.
That’s all I have for you this week. Thank you again for listening. Remember to check out the Autism and The Human WordPress blog transcript. Please subscribe, like, rate, review, and share if you have liked my content. I am officially taking a break to spend time with my children in August before school starts again. I will be working on finishing my thesis between September and December, which means I won’t be adding episodes regularly. My current plan is to post one episode a month from August-January.
September’s episode will explore autistic agency and how Applied Behaviour Analysis strips autistic people of agency. This discussion will include how ABA conditions autistic children to comply with authority. They are taught that their body is not their own to control. This grooms them to be the ideal target for sexual assault. I will finally be talking about how the abortion issue in the United States of America will place many autistic girls in the position of being forced to give birth to their rapist’s child. Until September 19, Keep On Noodling.
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