Sarah’s Summaries – We’re Not Broken: Changing the Autism Conversation”

“We’re Not Broken: Changing the Autism Conversation” By: Eric Garcia

Summarized by Sarah Kovit Hanna

• The beginning of America’s understanding of autism goes back to a 1943 study by Leo Kanner at Johns Hopkins University. However this study is also the catalyst for many of the pieces of misinformation and stigmas about autism that remain pervasive today. For example, the study put the “blame” for autism on parents being cold and unloving to their children noting autistic children were born with an innate inability of forming social contact but that parents were “keep[ing] [autistic children] neatly in a refrigerator which didn’t defrost.”
• A 2019 report from the Interagency Autism Coordinating Committee, 75% of all research spending for autism goes toward finding the causes of autism while only 6% of the budget is spent on improving services and supports for autistic people. “This contrast in spending reflects this country’s backward values; rather than learning how to best assist autistic people as they navigate the world, researchers focus on mitigating symptoms and finding a cure.”
• “It would behoove the United States, a nation that leads the world in research funding to focus on what autistic people really need: to get a job if they are able and not to live in poverty if they cannot find one; to avoid discrimination; to receive an adequate education; to live within the community they choose; to have access to adequate health care; and finally, to be free to pursue fulfilling personal lives.”
• Speaking about employed and seemingly “unaffected” autistics, “Frequently, people like me are portrayed as ‘overcoming’ autism, something that is viewed as a great achievement, but autism is an integral part of my identity, and as such, it has played a role in my success.  Since I began reporting and writing about autism, I have met autistic people who are much more intelligent and capable than I am but who are languishing because they did not have the same opportunities, support structure, or just pure luck that I did. The world around them is a bigger impediment to them than their autism ever was.”
• Myths about autism:
  •  That autism is something that only affects white males
  • That autistic people with more support needs are somehow less human or less valuable than autistic people who require less support
  • That autistic people should appear in the media only when they inspire hope or pity
  • That autistic people are incapable of holding jobs outside of the technology field
  • That autistics cannot have relationships
  • That autistics cannot live independently
  • That autistic people cannot advocate for themselves
• Disability rights activist Rebecca Cokley coined the term ADA generation for disabled Americans in school when the Americans With Disabilities Act was passed in 1990. Those who went to school after the ADA was passed are referred to as the Spectrum Generation because they were able to get autism diagnoses and supports because of the ADA.
• The Spectrum generation represent a time in autism advocacy where the emphasis changed to be about the autistic person as an individual. There is a saying, “Nothing about us without us” which embodies this paradigm shift.
• Many of us have seen the saying, “I would not change my son for the world, so I will change the world for my son.” Did you know that this came from Keivan Stassun, the parent of an autistic son and the director of the First Center of Autism and Innovation at Vanderbilt University?
• “In 2013, the American Psychiatric Association placed autistic disorder, Asperger’s syndrome, childhood disintegrative disorder, and PDD-NOS in the DSM-5 under the umbrella of autism spectrum disorder. This new label for the condition is characterized by ‘persistent impairment in reciprocal social communication and social interaction’ and ‘restricted, repetitive patterns of behavior.’”
• Did you know that protections for autistics under federal law are relatively new? “Regulation from the ADA Amendments of 2008, which expanded the definition of disability, specifically named autism as a disability, and therefore, autistic people were protected by it… The House of Representatives report on the legislation said that ‘autism has suffered from a historically inaccurate identification with mental illness’ and that including autism in IDEA was ‘meant to establish autism definitively as a developmental disability and not as a form of mental illness.”
• Ever wonder how Autism Speaks came to be?- “NBC/Universal chairman and CEO Bob Wright and his wife, Suzanne, founded the organization Autism Speaks in 2005 after their grandson Christian was diagnosed with autism. The group’s mission statement said the nonprofit was ‘dedicated to funding global biomedical research into the causes, prevention, treatments, and a possible cure for autism.’” This mission statement is some of what has made them a controversial organization.
• The Autism Society of American was founded by Ruth Christ Sullivan, an autism parent who lobbied for autism to be included in the Developmental Disabilities Act signed by Gerald Ford.  This law said, “persons with developmental disabilities have a right to appropriate treatment, services, and habitation for such disabilities.” She was able to get autism onto the list of diagnoses covered by this law.
• Eric Garcia on why we need to listen to autistic voices and not just those of autism parents, “The problem with focusing on the parents of autistic people instead of the autistic people themselves is that when these two sides clash, society tends to sympathize with the parents… Parents must recognize when their own desires come at the expense of autistic people’s well-being”
• Did you know the Autism Science foundation was formed because of the vaccine debate within the autism community?- “The vaccine debate also divided many within Autism Speaks. In 2007, Katie Wright, the mother of autistic son Christian, placed herself on the side of ‘The Mercurys”, a faction named for their belief that mercury in vaccines is a cause of autism. Her parents, and the organization’s founders, Bob and Suzanne Wright, put out a statement saying ‘Katie Wright is not a spokesperson’ and that ‘her personal views differ from ours.’ Alison Singer, who was the Autism Speaks chief executive, quit the organization in 2009 because she felt it focused too much money on the link between autism and vaccines. Singer would later go onto start the Autism Science Foundation.”
• Jim Sinclair- “Autism is a way of being. It is not possible to separate the person from the autism. When parents say, ‘I wish my child did not have autism,’ what they’re really saying is ‘I wish the autistic child I have did not exist.’ … Sinclair pointed out the hurt caused by this rhetoric. They said that when autistic people hear this, they hear ‘that your greatest wish is that we will one day cease to be, and strangers you can love will move in behind our faces.’”
• Jim Sinclair- “Yes there is a tragedy that comes with autism: not because of what we are, but because of the things that happen to us. Be sad about that, if you want to be sad about something. Better than being ad about it, though, get mad about it—and then do something about it.”
• “Nothing about us without us.’ Coined by the Autism Self Advocacy Network
• “Yes, there are difficulties accessing services for autistic people, but to portray autism as a tragedy is to demean the value and lives of autistic people and turn them into burdens.”
• “Autistic students are about twice as likely to enroll in a community college than in a university, according to a May 2014 study in the Journal of Autism and Developmental Disorders, which found that 81 percent of college students with ASD were enrolled in community college at some point after secondary school. But the authors also found that students who studied science, technology, engineering, and mathematics (STEM) were twice as likely to transfer to a four-year university than those who studied non-STEM subjects.”
• “M. Remi Yergeu, the Michigan professor, told me that this is the main reason autistic people fear asking for accommodations—it feels as if we’re seeking out special treatment and that we’re the problem. But asking for help is about addressing structural problems that hold autistic—and all disabled—people back.”
• The ‘social model’ of disability argues that the biggest obstacle to disability is a world around disable people that does not accommodate them while the ‘medical model’ of disability sees disability as something that needs to be fixed.
• “A 2017 study form the Journal of Autism and Developmental Disorders found that for most autistic college students, the major problem wasn’t the academic but the on-campus aspects of college life. ‘Over three quarters of the students reported regular struggles with feelings of isolation, being left out, and lacking companionship,’ the study said. Autistic student had an alarmingly high risk of suicide, with nearly three-quarters of participants saying the ‘had some form of suicidal behavior over their lifetime,” 40 percent of them reporting having made suicidal plans, and 14.6 percent attempting suicide.”
• John Elder Robinson- “Everyone knows how autism, ADHD, dyslexia, and other neurodiverse conditions disable us as children. What we need to balance that are successful adults who attribute their achievements in part to neurodiversity.”
• Dave Caudel- “If we only take care of those wealthy kids who have autism, we’re leaving a lot of autism on the table.”
• “There are two dominant myths surrounding autistic people in the workforce. First, autistic people are often the victims of what George W. Bush speechwriter Michael Gerson called “the soft bigotry of low expectations,” meaning they are expected to be unable to work or only be able to work jobs that pay subminimum wage. The second myth is the inverse of the first: people view autistic people as being hypercompetent in the fields of science, technology, engineering, and mathematics, as if we should all be coders in Silicon Valley.”
• “Autistic people excel in a myriad of job. No one should presume to know what autistic people can do; what should be presumed is that autistic people belong in whichever professions they choose. That being said, autistic people’s value and worth should not be tied to whether they are employable. It doesn’t matter if an autistic person holds a high-paying job or receives government assistance; autistic people should be viewed with the same dignity that all people deserve.”
• “There needs to be institutional support for autistic people regardless of their work environments. Autistic people should feel their only limit to working in a profession is their own capacity to do the job rather than any outlying barrier that would exclude them.”
• Did you know that companies like Microsoft, SAP, EY, and J. P. morgan Chase created an “Autism @ Work Playbook” to help make the hiring process easier on autistic candidates?
• “The push to create autism at work programs can create tiers of worthy autistic people. This concept, of course, is not new. It goes back to the idea that there are high functioning and low functioning autistic people, which runs the risk of creating a power imbalance. It sets up the false narrative that autistic people who cannot find full time work or who do not have the capacity to work full time are not worth the same amount of attention or resources that autistic people who can become assets for companies receive.”
• Endever star- “While it is good to advocate for decreased barrier to employment for autistic people who want to work, there will always be some of us who simply cannot hold jobs. We need to consciously avoid saying things like ‘autistic people can work too is we just have the right supports! That’s a sweeping generalization that denies the reality of part of our community.”
• Labels hurt the autism community- “When people exist somewhere between these two ideas [high functioning and low functioning], they often wind up getting neither accommodating work environments nor income from social safety-net programs.”
• Did you know that the law allows disabled people to be paid less?- “The Fair Labor Standards Act of 1938 established the cornerstones of American labor, like the federal minimum age and overtime pay. President Franklin D. Roosevelt considered it some of the most important legislation he signed net to the Social Security Act. Section 14(c) of the law allowed employers to pay disabled people ‘whose earning or productive capacity is impaired by a physical or mental disability, including those relating to age or injury for the work to be performed’ below the federal minimum wage.”
• “At the core, though, the arguments for subminimum wage still devalue the work of disabled people. While it is important to offer respite to caretakers and all these supports are valuable, none of these arguments deal with the fact that disabled and autistic people’s work has wort and is no less deserving of adequate compensation. There can and should be a means of respite care and day programs that are fully funded and that are integrated into the community. But these arguments still ignore that autistic people- and disabled people as a whole– have as much worth as other people.”
• “The divide between parents and self advocates about sheltered workshops and subminimum wage labor is about what is most valuable. Parents tend to value the accoutrements of subminimum wage labor- the respite came the chance for their kids to get out of the house, and the accompanying Medicaid services- and they don’t want to lose it. But autistic people and self-advocates want to emphasize their labor is equal in value to nondisabled labor and so it deserves the same amount of compensation. Autistic people being paid below minimum wage sends a message that they can cosplay as workers and have small concessions, but their labor will always be considered subpar. The illusions of fairness will never be a substitute for the real thing.”
• “Autistic people work not just in technology or finance or even journalism but in every industry and at every type of income level. But because neurotypical people tend to think tat autistic people are either unable to work or must be savants who understand computers better than they understand people, plenty of autistic people get ignored. The myopic and limited stereotypes often wind up hurting those autistic people who exist in every sector and lock out autistic people who want to enter various parts of the economy.”
• “A lot of public’s misunderstandings about autism are thanks to fictionalized tropes. Historically, Hollywood has helped perpetuate narratives that infantilize autistic people. For example, the first time that many Americans were exposed to autism was through the 1988 movie Rain Man…”
• “These days, there is a divide between some parents and self-advocates over what the best environment for autistic people is. Many parents of autistic people with higher support needs have argued that their children need environments that are more restrictive—places that some self-advocates would deem institutions but that these parents believe can ensure their children’s wellbeing and security. Conversely, many autistic self-advocates see being part of a community- whether it is living with friends, parents, a home care worker, or simply by oneself—as being part of the social fabric. It means our fate and our health are tied to others and we cannot be relegated to seclusion.”
• How some autistics feel at the end of the day- “You literally are unable to move because you have spent your entire energy reserves trying to interact with people all day. It is the equivalent of running miles in a weighted bulletproof vest. Afterward, you have no more physical force to exert.”
• Emergence of Shared Living Model for autistics- “Shared living, which is essentially where ‘an individual, a couple or a family in the community and a person with a disability choose to live together and share life’s experiences’…The intention behind these projects is to ensure disabled people ‘experience real community life’ rather than one controlled by an outside body.”
• “The Supreme Court ruled in Olmstead v. L.C. that unjustified segregation of people with disabilities violated Title II of the ADA and said that public entities must provide community-based services for people with disabilities when appropriate. This essentially meant that segregation of people with disabilities was now a form of discrimination and therefore was against the law.”
• “A 2018 study from the Journal of applied Research for Intellectual Disabilities found that families said that home and community based services autism waivers improved their overall family quality of life.  Another 2018 report from Medical Care found that HCBS waivers were associated with reducing the number of unmet needs in autistic children and more generous waivers were associated with fewer unmet needs.”
• “But HCBS, like everything in autism advocacy, has become a battleground between autistic self-advocates and their supporters versus (largely) parent advocates and their supporters, the latter of whom want what they believe is the safest possible option for their children. Many parents of autistic children also want to keep autistic people in some sort of isolated or segregated setting.”
• “Many states have adopted supported decision making as an alternative to guardianship. In guardianship, disabled people often have little control over their lives without the consent of their guardian. Supported decision making allows people to make their own decision about their health care, residence, and finances but with the assistance of people they designate as their supporters. Still at the end of the day, it is disabled people who have the final say.”
• “But while yes, the right to grow up also includes the right to screw up, only able bodied people have this luxury. For autistic and other disabled people,  every bad decision becomes a referendum on your right to live independently.”
• “To be disabled is to constantly fear that any bad decision you make will cost you your autonomy, particularly when there’s a historical precedent for institutionalization. It makes your freedom all the more precarious. As Ruti Regan, an autistic rabbi and activist has written, ‘the risk of failure is often higher than it is for people without disabilities.’ But by the same token, Regan writes that when disabled people are not allowed to fail, we are not allowed to succeed. ‘Because for all people, success rests on a lot of ailed attempts. And because disability typically involves uncertain abilities, we usually need to make a lot more failed attempts than nondisabled people as we figure it out.’”
• “Still, there is this expectation for autistic people that life, liberty, and the pursuit of happiness are not rights but a diploma that they must earn.”
• “For years, disability was seen through the lens of the so-called medical model, wherein disability itself was the problem. By contract, disability rights activists adopted the social model, which states that the problem isn’t disability but rather that society is not accessible to disabled people. In this view, the world needs to shift in paradigm about disability to become more welcoming to them, this view doesn’t diminish the needs of disabled people or the fact that disability can have complications. Rather it recognizes the needs of the disabled people have and works to give them services so they can live more fulfilling lives. At its core, the social model advances the civil rights of people who have certain developmental disadvantages but are not inferior because of them. They just need assistance to ensure equity.”
• Aiyana Bailin- “’The neurodiversity approach is primarily a call to include and respect people whose brains work in atypical ways, regardless of their level of disability,’ and it requires challenging assumptions of what’s normal. Bailin means that impairments that autistic face ‘don’t change a person’s right to dignity, to privacy, and to as much self-determination as possible, whether that means choosing their career or choosing their clothes.’”
• About ABA-“The debate about applied behavioral analysis ultimately comes down to how autistic people should be treated. Plenty of parents enroll their children in ABA, hoping to give them some modicum of hope for a normal life. But the parameter of what is considered a ‘normal’ life are often defined by people who are not autistic. While there certainly should be a focus on stopping behaviors that cause harm to autistic people or that violate the personal space and safety of others, that impulse cannot come at the expense of things that make autistic people themselves. They must not be forced to suppress what makes them who they are.”
• “It is important to state that fighting for neurodiversity or celebrating disability does not mean that autistic people think that their condition is all good.  They still recognize it is a disability.”
• “But embracing autism or accepting autistic people for who they are does not mean ignoring the legitimate challenges. Far from it. It simply means acknowledging that autistic people and all neurodivergent people deserve the same civil rights as others, which advocates like Sam Crane at ASAN have articulated. Often, they are the ones who want to include it in the larger movement for disability rights and request more accommodations. Many of them recognize that some autistic people have more impairments than others and want to find ways to help autistic people with comorbidities like epilepsy and gastrointestinal issues. Embracing autistic people and acknowledging their needs are not mutually exclusive ideas; they are complementary.”
• “One 2018 meta-analysis of sixty-six studies in the Journal of Abnormal Child Psychology found that people with autism spectrum disorder ‘are 4-times more likely to experience depression in their lifetime.’”
• “But this narrative that autistic people are incapable of relationships or get dates only out of pity is simply false. Plenty of autistic people do have partnerships and often families that thrive specifically because they understand each other’s ways of functioning in the world.”
• From “The Sun” an Autism Delaware newsletter- “Fears and stereotypes often impede individuals with disabilities…Stereotypes include the belief that people with ASD are childlike, nonsexual, over-sexual, unable to understand, unable to give consent, uninterested in sexual relationships, unable to develop or maintains a sexual or romantic relationship, or not able to get married or have children.”
• “A 2017 study that appeared in the Journal of Autism and Developmental Disorders found that 20 percent of autistic people had been stopped and questioned by the police and 5 percent of them had been arrested by the age of twenty-one.”
• “There are many things that could make autistic people seem threatening to police. The fact that we stim and fidget could be mistaken for a sudden movement- like reaching for a weapon- that police view as a threat. The fact that many autistic people don’t make eye contact could be seen as not being respectful t police officers. If police don’t know that autistic people speak in echoing, they might interpret a person as indirect or evasive.”
• Barry Prizant- “autism isn’t an illness. It’s a different way of being human. Children with autism aren’t sick… [and the best way to help them wasn’t] to change them or fix them. We need to work to understand them and then change what we do.”