A Beginner's Guide to Autism
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Problems Facing
​the Autistic Community

While autism can be a difficult
 
neurotype to live with, many of
 
the problems experienced by the
 
autistic community at large
 
circle back to ableism and
 
dehumanization.


​

Bullying and abuse:
​

Because of their atypical behavior and mannerisms, autistic people are often bullied by their peers for their differences or abused by authority figures for having different needs. Sometimes this bullying and abuse is intentional because of a hatred of autism, but often the offending party has no idea why the autistic person is different, they just know that they are. This is why it is so important to educate people at a young age about all the different kinds of people in the world and why they may act the way they do, so that they may develop a better understanding of those around them, disabled or not.


Lack of representation:
​

Like all disabled communities, autistic people are under-represented in the media, although this is changing. This is significant because exposing people to those different from them can help them better understand them and be comfortable with them. Because society also uses media to fill identity needs, not being able to see themselves validated on screen may also lead to low self esteem in autistic people. “Media can influence viewers in positive ways when handled carefully, as representation can serve as opportunities for marginalized people to find community support and validation; this becomes problematic, however, when considering the negative portrayal — or complete lack of representation — of certain identities,” says Nya Herron of the Colgate Maroon News. Some examples of negative autism representation include films and tv that reinforce stereotypes and portray autistic people as unintelligent, sexist, rude, obnoxious, or only show autistic people as white males. This hurts the reputation of the community and can lead to under-diagnosis if someone does not fit the arbitrary stereotypes. Some examples of bad representation include the singer-songwriter, Sia’s movie, titled Music, and the Netflix show, Atypical. Both of these pieces of work make a stereotypical mockery of autism. The former also promotes dangerous restraint techniques. This is due in part to the lack of autistic input to ensure sensitivity and accuracy in the making of these works which is its own issue. The low demand for autistic actors to portray themselves stops autistic people from pursuing film careers and because of the potential political incorrectness that can come from wearing a disability like a costume that one can take on and off. Representation that seems positive can also be harmful, such as the show The Good Doctor, which features a character who is a hyper intelligent savant able to do amazing things because of his autism, which may lead people to think that either all people with autism are hyper intelligent or that autistic people who are not as hyper intelligent or “useful” are not worthy of the same respect.
  
  

Under-diagnosis:

Unfortunately, psychiatric professionals are not immune to stereotyping, as such, people who do not fit the stereotypical view of an autistic person such as adults, people of color, girls, and those who do well in school, may find it hard to receive a diagnosis. One girl is diagnosed with autism for every three boys and girls are often diagnosed much later in life. Some are even originally diagnosed with borderline personality disorder. According to the Child Mind Institute “many ‘higher functioning’  autistic girls are simply missed. They’ve been termed the “lost girls” or “hiding in plain sight” because they’re overlooked or diagnosed late. Dr. Susan Epstein says “the model that we have for a classic autism diagnosis has really turned out to be a male model. That’s not to say that girls don’t ever fit it, but girls tend to have a quieter presentation, with not necessarily as much of the repetitive and restricted behavior, or it shows up in a different way.” They often don’t fit the stereotypes or their symptoms are misinterpreted completely as something else entirely. Girls may be better at hiding the signs, at least when they’re young. Science Daily estimates that ¼ of all autistic children are undiagnosed, most of which are black or Hispanic. According to a 2001 study by McGill University, doctors were more hesitant to diagnose autism in ethnic minorities. As such, black and Hispanic autistic people, like girls, are also more likely to be diagnosed later. Without an official diagnosis, it can be hard to be taken seriously or receive any kind of accommodation. A diagnosis can also improve mental health and self love by validating people who have been told they’re doing something wrong all their life that they are not actually “broken.”


Infantilization:

(trigger warning: sensitive content)

There seems to be a misunderstanding of the fact that autistic people will eventually grow up. This can both mean that the public may sometimes think that people with autism will potentially grow out of their symptoms or that autistic people will never grow up at all. Autism is predominantly seen as a children's affliction. When you type “autistic” on an Apple device, chances are the words “child(ren)” and “kid(s)” will come up in predictive text. Some people and charity organizations have claimed or acted like autistic adults don’t exist. For example, David Kirby, a journalist who helped spread the false notion that vaccines cause autism, claimed the inexistence of autistic adults in the Huffington Post in 2005. Another example is Autism Speaks, who listed the number of autistic people and autistic children as the same number. The denial of autistic adults is of course due in part to the fact that the number of autism diagnoses we see now are a new phenomenon and many autistic people of older generations went undiagnosed. This creates the impression that autism is much more prevalent in children. In addition to the erasing of autistic adults, many autistic people are also infantilized regularly. Some people question if autistic people can have a sex life or even if they can consent at all. People often also talk down to autistic people even if they are the same age or older.


Eugenics:

(trigger warning: sensitive content)

Eugenics is the science of trying to increase the occurrence of desired inheritable traits and decrease the occurrence of undesired ones. Trying to erase any perfectly valid neurotype from the planet or gene pool by way of “curing” it is eugenics. Many organizations, such as Autism Speaks and the Spectrum 10k project seek to cure autism and build a database of the autistic genome to find out what causes it and possibly detect it in the womb which may lead to abortions of autistic fetuses. Autistic people may also be harassed by being told they should not have children. What’s more, disabled people can still be forcibly sterilized legally in 31 states and 17 of those allow it on disabled children. In her book, To Siri With Love, Harper Collins mentions wanting to get her 16 year old son with autism a vasectomy.
 
 

Lack of accommodation:
​

While public schools in America are required to accommodate all disabilities and provide special ed services under The Individuals with Disabilities Education Act (IDEA), private schools still are not required to by law. What’s more, despite it being required, many public school teachers will flat out refuse to accommodate those with autism or other disabilities without being forced by parents and the school’s IEP (individualized education plan) department and the teachers may even become angry when that intervention occurs. 
​

 

Gaslighting:
​

Most autistic people frequently experience gaslighting, the manipulation of another person to question their sanity, whether intentional or not, due to the fact that they experience the world differently. They may be told “it’s not that loud,” “it’s not that bright,” or “it’s not that itchy” by people who struggle to or refuse to believe their perception of the world is different than those with autism when the latter are struggling or experiencing a sensory issue or sensory pain. Because of this many autistic people will be pressured by themselves and others to ignore sensory pain, which can lead to them ignoring “regular” pain down the line. To avoid doing this, remember that autistic people have different and often intense sensory experiences compared to the neurotypical majority.
 
 

Electric shock and the Judge Rotenberg Center:

(trigger warning: sensitive content)


The Judge Rotenburg Center is a school and institution for children with developmental disabilities which has become infamous for its use of graduated electric deaccelerators (GEDs). These devices deliver an electric shock as a form of aversion therapy to punish undesirable behavior in their students.
 

Student can be and have been shocked for: 
  • Stimming
  • Standing without permission
  • Using the restroom without permission
  • Having an accident because they were not allowed to use the restroom 
  • Stopping work for more than 10 seconds 
  • Not being neat
  • Closing their eyes for more than 5 seconds
  • Not taking off a coat when instructed 
  • Screaming in pain while being shocked

GEDs at the center are worn by the “students” 24 hours a day even during sleep and bathing. They administer a shock of 30-90 mA (milliamps) lasting for 2 seconds. For perspective, a cattle prod produces a shock of 10 mA (milliamps) for only a fraction of a second. The devices can also burn skin and cause temporary paralysis. You may be thinking that this sounds like torture, and according to the UN, who have condemned them for torture, it is. While the FDA has banned the use of GEDs as a “treatment” for autism, the Judge Rotenburg Center has been made exempt from that ban by a ruling of the U.S. Court of Appeals for the District of Columbia Circuit. The center also uses restraints, such as strapping an autistic person to a 4 point board, the withholding of food, sensory deprivation by the use of a helmet that restricts sight and hearing, and rehearsals where they are pressured into performing undesired behaviors so that they may be shocked.

There have been 6 deaths at the center since its creation in 1971!



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Thin slice judgments:
​

According to Neuroclastic, “A ‘thin slice’ judgement is based on a first impression that becomes a long-lasting part of someone’s perception and attitude. Research has demonstrated that after only a couple seconds of seeing an autistic person, non-autistic people begin to have a negative reaction to them. Autistic people are often distrusted and disliked on first sight.” In trials, allistic people rated people with autism less dominant, attractive, smart, trustworthy, and likable than their allistic peers. This may be because of things like “abnormal” gait, way of speaking, body language, or clothing choices. These prejudices can lead to autistic people struggling with social isolation, bullying, altercations with police, and unemployment.


Picture


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Negative framing in the scientific community:

When people don’t understand the concept of neurodiversity, they may frame every difference autistic people have compared to neurotypicals as a negative. Take the 2020 study that autistic people have too much empathy, for example. According to the study, “here, we show that ASD [autism spectrum disorder] individuals are more inflexible when following a moral rule even though an immoral action can benefit themselves, and suffer an undue concern about their ill-gotten gains and the moral cost.” Instead of being praised for empathy, autistic people are told we are “inflexible” and “suffer undue concern.” The study also referred to the allistic test group as the “healthy” test group and the autistic group as the “ASD patients.” They used the terms “atypical moral behaviors,” “a core deficit in theory-of-mind (ToM) ability,” and “dysfunction” to describe the autistic group. It seems even before they performed the experiment they had made up their minds that “different” was wrong. This kind of language can also be found in the DSM5, to a lesser extent. It reads “restricted, repetitive patterns of behavior, interests, or activities” when describing autism. This is true of course, but why not, more accurately say “those with autism use stimming to self regulate senses to avoid sensory overload and often have a deep fascination or fixation with topics that interest them?” If we were to describe allistic behaviors in such a way, according to the parody article titled Allism Spectrum Disorder, we might say non autistics “tend to suffer from a lack of empathy, or mind blindness, in that they have difficulty understanding or intuiting the needs and thoughts of others.”


Picture



Filicide:
​
(trigger warning: sensitive content)


Filicide is defined as the killing of one’s own child or dependent regardless of a disability. Unfortunately, filicide affects disabled people more often than no disabled people. According to the Autism Self Advocacy Network (ASAN), over 650 disabled people have been killed by parents or caregivers in the last 5 years. Generally when this happens, the news and media will victimize and excuse the murderer, talking about how much of a burden the disabled dependent was, and how the disabled individual essentially pushed the murderer to kill. For example, according to ASAN’s anti-filicide toolkit, following the murder suicide of George Hodgins “journalists wrote about George Hodgins’ murder. In their articles they called him ‘low functioning and high maintenance,’... and called Elizabeth Hodgins ‘a devoted and loving mother.’... They sought out quotes from other parents of autistic children, who normalized the crime by saying things like ‘every mother I know who has a child with special needs has a moment just like that.’ People came to comment on these articles. They said that they felt sympathy for the mother. They called her George’s ‘guardian angel.’ They said no one should judge her unless they had walked in her shoes. They said that it wasn’t wrong because he was autistic, and autistic children are hell to raise. They said that it wasn’t wrong because she was obviously responding to a lack of services. (In fact, she had refused services.) They said that it wasn’t wrong because he was disabled, … and his life couldn’t have been very good anyway.” Another parent, Robert Latimer, called for euthanasia of the disabled to be legalized only after first killing his own autistic daughter “with love and compassion.”


Trauma and depression: 

While these are not inherent symptoms of autism they are extremely common within the community due to the bullying and abuse that most autistics face at some point in their lives. 

​

High suicide rates:

(trigger warning: sensitive content)


Autistic people are 6 times more likely to commit suicide than their allistic peers.

​

Lack of resources for adults:

While occupational therapy is generally available for autistic children it is much harder to find an occupational therapist (OT) that will treat adults. This is likely due to the stereotyping of autistic people as children leading to a lack of understanding that autistic people do, in fact, grow up.

​
​
Sources:
  • #stoptheshock: The judge Rotenberg Center, torture, and how we can stop it. Autistic Self Advocacy Network. (n.d.). Retrieved September 15, 2022, from https://autisticadvocacy.org/actioncenter/issues/school/climate/jrc/
  • 2022 Anti-Filicide Toolkit. Autistic Self Advocacy Network. (2022). Retrieved September 15, 2022, from https://autisticadvocacy.org/projects/community/mourning/anti-filicide/
  • Arky , Beth. “Why Many Autistic Girls Are Overlooked.” Child Mind Institute, 14 Apr. 2022, https://childmind.org/article/autistic-girls-overlooked-undiagnosed-autism/. 
  • [@autisticbookclub]. “testimonials from autistic people originally diagnosed with BPD.” Instagram, 22 August 2022, https://www.instagram.com/p/Chjvc_7PZHu/?igshid=YmMyMTA2M2Y=
  • Autistic Science Person, says:, tallgirl79, says:, K., says:, L. H., says:, R., says:, K., & says:, M. (2021, March 29). Autistic sensory pain and the medical consequences. Autistic Science Person. Retrieved September 15, 2022, from https://autisticscienceperson.com/2021/03/29/autistic-sensory-pain-and-the-medical-consequences/ 
  • Autistic Self Advocacy Network. (2022, September 6). Retrieved September 15, 2022, from https://autisticadvocacy.org/ 
  • Baptiste, K., Mawer, E., Harvey, J., & Slater, C. (2022, April 16). Hollywood autism: The good, the bad, and the downright insulting. Outtake Magazine. Retrieved September 15, 2022, from http://outtakemag.co.uk/features/2021/06/29/autism-film-representation/ 
  • Can autistic people give consent? Quora. (n.d.). Retrieved September 15, 2022, from https://www.quora.com/Can-autistic-people-give-consent
  • “Diagnostic Criteria.” Centers for Disease Control and Prevention, Centers for Disease Control and Prevention, 6 Apr. 2022, https://www.cdc.gov/ncbddd/autism/hcp-dsm.html. 
  • Gim, E. (2022, April 15). Disabled people can still be forcibly sterilized in over half of the US. Rewire News Group. Retrieved September 14, 2022, from https://rewirenewsgroup.com/2022/01/25/disabled-people-can-still-be-forcibly-sterilized-in-over-half-of-the-us/ 
  • Herron, N. (2022, April, 8). Why representation in Media Matters. News. Retrieved September 15, 2022, from https://thecolgatemaroonnews.com/36313/commentary/why-representation-in-media-matters/ 
  • Marie. (2021, September 17). Why autism eugenics is everybody's business. Neuro Diverse Self Advocacy Forum. Retrieved September 14, 2022, from https://ndsa.uk/content/why-autism-eugenics-is-everybodys-business/
  • May , Tamara, and Carol A Adams. “Autism Is Still Underdiagnosed in Girls and Women. That Can Compound the Challenges They Face.” The Conversation, 27 Aug. 2022, https://theconversation.com/autism-is-still-underdiagnosed-in-girls-and-women-that-can-compound-the-challenges-they-face-176036. 
  • Neuroclastic [@neuroclastic]. “drawing of a JRC guard and student”. Instagram, illustrated by Kate Jones, 15 May. 2022, https://www.instagram.com/p/Cdl5S3Ivbj2/?igshid=YmMyMTA2M2Y=
  • Neuroclastic [@neuroclastic]. ThinSlice Judgements. Instagram, 2 May 2022, https://www.instagram.com/p/CdEA3STOVU1/?igshid=YmMyMTA2M2Y= 
  • Newtsoda [@newtsoda]. morality & how researchers talk about us. Tumblr,  15 April 2022, https://newtsoda.tumblr.com/post/681610131808681984/there-has-been-a-lot-of-research-about-autistics 
  • “One-Fourth of Children with Autism Are Undiagnosed.” ScienceDaily, ScienceDaily, 9 Jan. 2020, https://www.sciencedaily.com/releases/2020/01/200109130218.htm. 
  • Patrick Jachyra Assistant Professor of Exercise and Neurodevelopmental Disabilities, et al. “Autistic People Are Six Times More Likely to Attempt Suicide – Poor Mental Health Support May Be to Blame.” The Conversation, 11 July 2022, https://theconversation.com/autistic-people-are-six-times-more-likely-to-attempt-suicide-poor-mental-health-support-may-be-to-blame-180266. 
  • Person, Autistic Science, and Autistic Science PersonI'm an autistic adult who blogs about late-diagnosis. I also write to help give non-autistic people insight about how autistic people perceive the world. “Autistic People Care Too Much, Research Says.” NeuroClastic, 11 July 2022, https://neuroclastic.com/autistic-people-care-too-much-research-says/. 
  • Private and non-traditional schools. Parent to Parent of Georgia. (2019, October 28). Retrieved September 15, 2022, from https://www.p2pga.org/roadmap/education/private-and-non-traditional-schools/
  • Rentz, Casey. “Black and Latino Children Are Often Overlooked When It Comes to Autism.” NPR, NPR, 19 Mar. 2018, https://www.npr.org/sections/health-shots/2018/03/19/587249339/black-and-latino-children-are-often-overlooked-when-it-comes-to-autism. 
  • Rodarme, S. (2017, December 11). An open letter to HarperCollins about to Siri with love. BOOK RIOT. Retrieved September 14, 2022, from https://bookriot.com/an-open-letter-to-harpercollins-about-to-siri-with-love/
  • Rowe, M. (2017, August 8). I'm autistic and I was majorly disappointed by Netflix's new show "atypical". Teen Vogue. Retrieved September 15, 2022, from https://www.teenvogue.com/story/netflix-atypical-autism-representation 
  • Stevenson, J. L., Harp, B., & Gernsbacher, M. A. (2011). Infantilizing autism. Disability studies quarterly. Retrieved September 15, 2022, from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4266457/
  • Vance, Terra. “Allism Spectrum Disorders: A Parody.” Psych Central, Psych Central, 22 Sept. 2018, https://psychcentral.com/blog/aspie/2018/09/allism-spectrum-disorders-a-parody. 
  • Wikimedia Foundation. (2022, August 7). Graduated electronic decelerator. Wikipedia. Retrieved September 15, 2022, from https://en.wikipedia.org/wiki/Graduated_electronic_decelerator#Intended_use 
  • Wikimedia Foundation. (2022, September 7). Judge Rotenberg Educational center. Wikipedia. Retrieved September 15, 2022, from https://en.wikipedia.org/wiki/Judge_Rotenberg_Educational_Center#Deaths
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