Autism

Autism PLA essay
by
Dylan Rothbein

When we think of developmental impairments no impairment comes with so many meanings and so many diverse presentations as Autism with many variable definitions that are contingent upon a multitude of factors historical period in question. The framework you’re basing your definition off of whether it be in a cultural context or clinical context and unfortunately the definition that fits your political point of view. Autism is the product of complex neurological structures that’s why are the brain in ways that puzzle those who study it and those who wish they had the power to destroy it through genetic manipulation eugenics (Podkul 2014). The question of what is autism is based on your interpretation as a disability and in what context is your definition derived from. The two main definitions of disability that create the context for the lens of which to view the question of what autism is can be derived from two elementary products of disability studies, the social model and the medical model (People With Disabilities Australia). The medical model of disability is the one that most people are familiar with the idea that a question of what the medical model would refer to as symptoms that are debilitating to the point of which day to day life is greatly impaired and the opportunity of day-to-day life is greatly diminished in some way shape or form (People With Disabilities Australia). This is why the medical model focuses on the idea of treatment at worst case scenario, and cure at the best case scenario according to proponents of the medical model (People With Disabilities Australia). Although at this point at least on a day-to-day level despite the popularity of modern day eugenicists is it the very least autism it is something that’s in need of treatment and medical intervention in the context of every era of an autistic person’s development from birth to death and if the eugenicists had it their way starting in the womb (Dunn 2020). The social model of disability frames it as a natural variation on the human experience because no two humans see the world exactly the same even if they may have started from the same place and in turn it is the barriers that stem from a society that isn’t designed for the disabled person and in turn it is society that in turn is tasked with building bridges to the disabled persons impairments through reasonable accommodations to the extent of which possible so that disabled people can live equally under the law so that way they can in turn be equal contributing members of their communities (People With Disabilities Australia). The social model of disability also set the stage for disability as a cultural identity with its own history and legacy.

Putting autism in a historical context is at the core of understanding what autism is exactly because within the community there are no two definitions that are 100% agreed on it any given time. The story of autism can be traced back to an Austrian Pediatrician by the name of Hans Asperger who is also unfortunately a Nazi (Slagstad 2019). The most prominent piece of writing by doctor Hans Asperger was his paper on autistic psychopathy where he talked about the kids that he was working with and the traits that they exhibited like their intense interest that we now call special interests and how a lot of them we’re incredibly literal in their understanding of things (Slagstad 2019). Doctor Hans Asperger also noticed how a lot of his young patients where incredibly intelligent particularly in the context of highly specialized areas (Slagstad 2019). Another physician that has shaped our understanding of autism is doctor Leo Kanner who defined autism in a different way than Hans Asperger (Slagstad 2019). Doctor Leo Kanner defined autism as a developmental condition that left the individual unable to speak or at the very least delayed in the development of speech for variable amounts of time and the autistic individual would be incredibly isolated in their ability to interact with society or was nearly completely unable to take care of themselves to variable degrees. The reality is both doctor Hans Asperger and doctor Leo Kanner were right and they were wrong about their findings (Senior 2015). Doctor Hans Asperger was right that there are artistic people who are quite articulate highly intelligent individuals who are impaired in their ability to interact with others but can become independent members of their community despite their impairments (Slagstad 2019). Doctor Leo Kenner was right that that’s some autistic people are not speaking and can be completely unable to take care of themselves on a day to day basis. Doctor Hans Asperger and doctor Leo Kanner both agreed on one thing that autistic people oftentimes have repetitive body movements that we now call stimming as expressions of autistic body language in the form of rocking pacing, head banging, and flapping are the most common. In the 80s the work of doctor Hans Asperger was re discovered by Lorna Wing a parent activist in England and after becoming acquainted with doctor Hans Asperger’s work she came up with a concept that would bridge the gap between doctor Leo Kanner definition a baptism in doctor Hans Asperger’s definition of autism this has been come to known as the autistic spectrum with a low end represented by the definition of doctor Leo Kanner and a high end represented by the definition of autism put forth by doctor Hans Asperger (Happe, and Baron-Cohon, 2014). In 1994 the DSM 4 came out in the DSM 4 that defines autism in accordance with Lorna Wing’s notion of a autistic spectrum (Happe, and Baron-Cohon, 2014). The DSM 4 defines autism as a series of subtypes that fall down the spectrum from severe profound autism on one side to on the opposite end high functioning autism and then one step higher than high functioning autism what is Aspergers syndrome (Happe, and Baron-Cohon, 2014). The DSM 4 also popularized the use of functioning labels as a means of distinguishing between different types of support and support to exact degrees that meet the autistic person where they happen to be (Happe, and Baron-Cohon, 2014). As far as I’m concerned functioning labels are not for the individual they are for the people supporting the individual so that way they have a clear framework as to what they’re dealing with in a general context that can be used to develop a support system for that particular individual. Although it is imperfect and often times not quite exact as far as I’m concerned there is realistically no other option than this when contemplating the various support a community as diverse does this one will need on any given day. the DSM 5 came out in 2013 where yet again redefined autism and consolidated all the individual diagnosis that existed in the DSM 4 into one diagnosis of the autistic spectrum disorder and in turn got rid of Aspergers. From my point of view this definition hurt the community in ways that couldn’t be overstated. For one thing the advisor to the DSM 5 was Ari Ne’eman of the Autistic Self Advocacy Network (Podkul 2014) who wanted to change the DSM so it mirrored his particular political agenda based in critical race theory and wokeness. The current definition of autism based in the DSM 5 also makes it difficult to know what you’re talking about when you are when you are talking about autism and in turn the support systems designed for autistic people for those people who were originally referred to as Aspergers makes it very difficult to go to programs because it’s very hard to know who it is for and either way you’re gonna be treated most likely as the other so you might have somebody who’s highly developed practically living nearly independently and someone who’s developmentally five years old who lives in a group home and now these two different manifestations of autism are treated as if they are the exact same when they couldn’t be more different despite having some some similarities. Ultimately the debate over the history of autism and in turn the definition of autism comes down to who defined to the community is it the Aspies or is it the parents of severely autistic people who push there insecurities regarding their autistic children I’m high functioning Aspergers people who are just trying to survive to the best of their ability in the world that isn’t designed to meet their needs all the time.

Autism is it culture with its own clear history and cultural norms among artistic people. In 1994 Jim Sinclair came out with one of the most foundational text don’t one for us all the disability rights movement, the autism rights movement more directly but I would argue still relevant for the disability rights movement as a whole. Jim Sinclair’s don’t work for us he said this standard for a number of artistic community norms 1st he popularized this concept of not separating the autism from the person this is where the use of identity first language became commonplace and did it over macular. In don’t mourn for us he made a pitch to parents that you should accept your autistic children however they may develop and to whatever degree they happen to develop because it is not their fault that you have an autistic child hence it is not fair for you to blame your children for not living up to what you envisioned for the family you wanted to start. Jim Sinclair also founded an event in the autistic community that was Co opted by their artistic self average the network called autry that I oftentimes describe as a autism Woodstock where different types of autistic people would come together to celebrate their autism and their distinct cultural eccentricities. based upon the work of Jim Sinclair and even more well known doctor Temple Grandin the concept of Neurodiversity was born which is the idea that developmental disabilities, psychiatric disabilities, learning disabilities and some would argue LGBT identities are natural variations in the human genome. It is this concept of Neurodiversity that some people who claimed to be allies of the community seek to exploit through modern day eugenics where organizations like the autism Science Foundation and Autism Speaks who mainly funnels money to the Autism Science Foundation through various avenues including perpetuate what Stella Young calls “inspiration porn” (Disability In The Media) through the media bribing politicians to contribute public funds to their propaganda campaigns and wax that raised money gaco straight to whether it be directly or indirectly wiping autism from the human genome so ultimately Autism Speaks and the Autism Science Foundation are simply pity funds where some a small percentage of the money might actually go for goods and services for autistic people but most of it go to wiping autism from the human genome (Dunn 2020). This means in effect that the greatest threat to the autistic culture is eugenicists Allison Singer of the Autism Science Foundation (Podkul 2014) who in many ways is a reincarnated version of Margaret Sanger.

Within the autistic community there’s a multitude impairments that are commonplace. Some autistic people go in between the idea of speaking and non speaking at various points in their lives where by speech delays are very common. Some people never speak a day in their lives. I personally think a middle ground in the debate over a person being able to speak or not speak is the idea of selective mutism which is technically classified as an anxiety impairment where a person speaks to some people and not others because of a multitude of factors that are debated like trauma versus natural comfort with a particular person or situation however in the context of autism I think a stage of selective mutism can also be described as a type of speech delay because it is a natural middle ground between people who are speaking and people who never develop the ability to speak. Another common trait are autistic people that we see a lot in the community is the emergence of echolalia which is the autistic approach to learning languages where an autistic person repeats words or phrases commonly from their favorite movie or TV show over and over again. I think a good career for high functioning people who are echolalic is to work as translators because of their innate ability to learn languages they would be very helpful at places like the United Nations and a lot of Aspies, although I am not one of them, respond very well to social situations scripted. Special interests in their autistic community are extremely widespread although it is very important to note they’re not every autistic person presents as every artistic truth special interests are still extremely right spread. High functioning autistic people may have a special interest in an academic and for low functioning autistic people you’re basically developed to the point of toddlers forever if that sometimes less often times have special interests like transportation or children’s media although it is rare but similar functioning people or sometimes in a slightly different way than the high functioning people obsessed with mathematics field that corresponds with what doctor Temple Grandin calls their style of mind. According to Dr. Temple Grandin there are different types of minds. There’s the autistic people who think in pictures. This is where a lot of the visual artists come from, some people who think in words like me, these are the people who tend to be very interested in history and are very adept at being writers but ultimately these are the factoids walk around as interactive encyclopedias, the pattern thinker who tends to be oriented towards math, science and music. I would argue that the word thinker also makes for good musicians because all a melody is, is a sentence and that is what you do at the end of a phrase that serves as the punctuation. This is especially true when I write guitar riffs. Autistic people vary in their communication style some people in the autistic community communicate very bluntly and directly while others make link to a script that society laid out for them. Autistic people interpret social interaction in a different way from a cultural preference not to look people in the eye to not being able to decipher the motives of others in turn not being able to pick up on the perspective of those around them. I personally believe that this is a result of not what people oftentimes call a social disconnect but rather a cultural disconnect. Another thing we see in autistic people is a neurological wiring that influences the development of their sensory system setting the stage for an impairment that we refer to a sensory integration that sometimes can lead to physical pain where autistic people can be hypo-sensitive to particular stimuli on one hand, or can be completely debilitated by a particular stimuli on the other hand. This is why a lot of autistic people struggle with the idea of being touched or with dietary restrictions that are direct result of their sensory impairments. A sensory issue that we see all the time but we don’t talk about enough it sounds sensitivity although it’s important to remember that when we think about something integration specially in regards to sound that no true sounds are like and just because approaching is hypersensitive to one sound does it mean they’re hypersensitive to another sound. Although I can be extremely triggered by fireworks to the point where I could easily have a meltdown which is basically like and overborne electronic generator that melts down within my neurology that goes through stages of meltdown where are my neurology start sweating I may start crying my body’s in agony and then my body shut down where it goes completely numb and I’m completely and utterly unable to speak for a period of time and some sounds like loud distorted electric guitars that I couldn’t put into words how much I love as a rock and roll musician. Like other types of no divergences autistic people struggle with executive function impairments as well that makes it difficult the paid bills and time and to be able to live independently despite being highly developed in the case of the Aspergers population.

Within the disability system and this is true of systems that handle disabled people of all ages if a person has been identified as more than one disability only one can be legally recognized and this is decided I’m extremely arbitrary grounds which is usually decided on the pretense I’m whatever a particular system is interested in at any given moment. For example if if a person who is Aspergers it’s going through a hard time emotionally the mental health system will disregard the autism and just focus on the mental illness in my experience this is a strategy that is doomed to fail by definition. High functioning autistic people because of their nuanced understanding of the fact that they are different from other people in society and in turn the cross cultural interactions that oftentimes don’t always go very well these individuals are oftentimes dealing with on top of the Aspergers, intense mental illness. One of the highest rate of death in high functioning autistic people over the age of 40 is unfortunately suicide which comes from a sad but understandable place of the fact that we have a community where majority of people or destined be shut ins never leaving their house and never holding down a stable job who end up dying alone because their existence isn’t known by society and they never hold down a job which helps develop self esteem and personal responsibility. This is compounded with the fact that the mental health system which is a natural backup to both the special education system and their developmental disabilities system is based on a premise that is a misnomer for developmentally disabled people that is recovery is possible although it looks different for every person. The reality is for people who are developmentally disabled there is no recovery there is only acceptance in hopes of developing cultural pride for the cards that they have been given. the other problem with psychiatric impairments in the artistic community is that for example a psych Ward is not going to have the infrastructure to be able to support the basic needs of the artistic person from dietary needs that are impossible to get officially diagnosed to the fact that the most common type of therapy used in psych wards is didactical behavioral therapy that is extremely abstract and has gone over my head anytime I’ve ever tried it. The people who work in the psych Ward from the mental health workers on the entry level love on the entry level tell the psychiatrist on the highest level don’t know how to interact with or support the eccentricities I’ve got a sick person because autistic people generally have different needs then other types of people even though we are all human and we all have human needs. The other issue with treating psychiatric impairments in the autistic community and this is true regardless of the degree of development of the autistic person is that there are physical ramifications bet nobody talks about when it comes to being autistic like the fact that the sensory system in the autistic person’s body may not be equipped to swallow a pill taking a lot of medications off the table and the gastrointestinal issues that are very common in the autistic community in the form of acid reflux and sleep disorders which played the artistic community. A more general problem when it comes to the physical health of autistic people is it a bottali coordination compounded by fine motor impairments which are physiological neurological manifestation of autism is the fact that it can make it very difficult for autistic people to engage in physical activity which is sad because one of the main causes of death in autistic children is drowning that stems from low functioning autistic people loafing the act of running away and in turn wandering into bodies of water and not being able to swim. The most common psychiatric diagnosis for autistic people include but are not limited to, anxiety, depression, bipolar disorder (Romero et al, 2016) and gender dysphoria, PTSD and complex PTSD. Sometimes when the psychiatric impairments become too much it can lead to high functioning autistic people not being identified as a part of the artistic community until they enter the psych ward. Within the autistic community LGBT identities are quite common amongst the Aspergers population with the two most common LGBT identities being Asexual, Bisexual, and trans. A lot of people don’t know this because often times when people get attentive the autistic community now because of the DSM 5 the issue of gender bottali awareness and sexuality not seen among low functioning autistic people who tend to be an overly example part of the population especially in the wake of the DSM 5. Learning disabilities are in many ways the most synonymous within autistic people with the main learning disabilities being within the autistic community ADD/ADHD (Romero et al, 2016) , Dyslexia, dysgraphia, and dyscalculia. Although there is an overlap between learning disabilities and autism sometimes in very high functioning cases ADHD is confused with Aspergers syndrome. Although in a very large percentage of the time they manifest simultaneously in the same person.

Although autism comes with a unique breed of strengths and weaknesses there are a number of approaches that can help enhance the lives are autistic people. They can be quite successful although having said this it’s always important to bear in mind that what works for one person maybe a hindrance to another person especially in the context of disability. Like we always say in the world of developmental disabilities including autism early intervention is key in the window for this early intervention services take place is extremely minute. Sometimes it may backfire in regression. For early intervention the two most common techniques Floor time and Applied Behavioral Analysis. Applied Behavioral Analysis has a controversial history because doctor Ivar Lovass originally used the techniques that we now know is ABA as a form of conversion therapy for gay people and to manipulate the behavior of animals. One of the criticisms of Applied Behavioral Analysis is that it’s extremely scripted and manipulates the behavior of autistic people into doing things not natural for them to do. This is why I believe that as a community we should come out with guidelines to talk about which behaviors are appropriate to address and which are not. When it comes to high functioning autistic adults we have to make a choice, a choice that the LGBT community knows also well. Do we wanna live bye an inorganic script that of a culture that’s push up on us or do we wanna live as our authentic selves and to what extent are we willing to compromise as individuals and as a community? I have made a choice that hasn’t asked me I will not go along with the social norms of my Neurotypical able bodied peers because when I tried engaging in social niceties for six months in accordance with the Neurotypical script I couldn’t bear to look at myself in the mirror. I know that this choice that I made has a tendency to make Neurotypical able bodied people uncomfortable around me and has a tendency for me to come off to some people as an ungrateful rude person and this is a small price to pay for authenticity. As a disability rights activist I am not in a position to tell a parent how to how to raise their child, a majority of the time parents know their child best so who am I to judge and ABA works for some people including my brother. A majority of autistic people going to special education although a minority of high functioning autistic people are mainstreamed. Sometimes depending and whether parents are able support then parents of their child they may be in need of a more specialized learning environment in the form of a district placement for either a day program or in some cases a residential treatment center. Most special education programs for autistic people go up to 21 although some people who are high functioning graduate between the ages of 18 and 21. A majority of autistic people go on after 18 to graduating from the special education system go on to mostly be unemployed and for the low functioning ones they are developmentally delayed to the point where for practical purposes they’re hardly employable even if in the case of high functioning autistic people they may have succeeded to graduate from college or trade school. When it comes to employing autistic people in the case of the Aspergers crowd I would strongly encourage self employment in the form of freelancing, new ownership particularly in the areas of art and media where eccentricity is encouraged and celebrated and because there is an extensive overlap between dyslexia and autism which is poignant in this particular circumstance because there is an extensive overlap between dyslexia and actual preneurship. When it comes to housing most autistic people live either in Group homes or a supportive apartment depending on the extent of which they’ve developed although some people who have succeeded in getting a career for themselves may be able to live completely on their own in the community without support although this is a very small minority. When it comes to autism in relationships a lot of people say that the reason why autistic people can’t find a mate is because of their inability to interact with people. I think this is utterly false. I think that the real reason why autistic people have trouble locating a mate is because of the cultural differences that exists between disabled adults and Neurotypical able bodied people. Let’s say for a lot of autistic people better person has sat around the house all day doing nothing get society’s nowhere to put you which is true of a lot of high functioning disabled people whose society acts like they can just dispose of and throw into isolation because it’s convenient for them and in turn at this event this has happened many times when I’ve gone to various Hillels and community groups in the Jewish community and the LGBT community there’s an immense cultural difference that starts the minute there’s hypothetically an icebreaker and everyone talks about what they do at work and they have no concept of what the autistic person talks about whenever they’re sitting around at home doing nothing or what they may have done and they have rehabilitation. The other problem I think with the issue of autism and relationships is that there is a power imbalance between the autistic person who is most likely unemployed and most likely not financially stable in any sense of the word going into a situation where the person who that person may end up in a relationship with or a sex encounter with is financially stable and has a full time job. This compounded with the fact that there is a marriage penalty for Social Security where do text calculations better counted at for people who are married as a couple and the fact that you can only have no more than $2,000 and your bank account at any given time this makes it very difficult to be in a relationship with anyone.

Historically various communities have had to reconcile differences between different segments of such community for instance in Israel there is always been a debate of Israel controlled by the Orthodox or is Israel controlled by the non Orthodox intellect and what extent can these differences be reconciled. When I was going to services at the NYU Hillel I learned about the concept of Jewish pluralism where the conservative service that I went to and the reform service held separate services but had dinner together and sometimes even the Orthodox shared dinner with the conservative in their form and everyone was respected no matter their particular level of observance. This is how I got the idea for autistic pluralism where high functioning and low functioning autistic people would be able to get together sometimes where applicable and where they can have separate gatherings that cater to their particular degree of development. Autistic pluralism would work like this for events like Special Olympics where we could compete together regardless of what type of autism we experience but for events like job skills or social skills we would have separate programs that would meet the needs of both demographics. Ultimately the case for autistic pluralism by the idea that that I am autistic in the same way that it happened to be Jewish but in the same way that I happened to be conservative reconstructionist Jewish I am Aspergers autistic which is why sometimes I describe myself as autistic and sometimes I describe myself as Aspergers and there are times when I call myself high functioning autistic in the same way I’ll call myself a non-Orthodox Jew.

Autism is one of the most complex and misunderstood natural variations in the human genome. Autism plays a role in the day-to-day neurological functioning of an autistic person’s brain in the areas of social interaction sensory integration executive function and even physical neurological impairments as well. Autism has a unique history. It’s only beginning to be told in books like in a different key and my personal favorite “NeuroTribes” despite some political disagreements I have with Steve Silverman who I believe is the greatest ally to the autistic community that the autistic community has ever seen (Senior, 2015). Autism as a diverse culture that is irrespective have any your immutable characteristic. Autism requires societal understanding and support that varies depending on the type of autism in question in an individual well the person who asked who’s Aspergers needs is not necessarily something that somebody who is low functioning autistic might need. To be artistic is to understand that you are in good company with people like scientists like Albert Einstein and artists like actor Daryl Hannah. Being an Aspie is a great honor and I couldn’t be prouder of my brain and what it is wired to do although like everything else the glass is to be seen half full as opposed to half empty in some contexts being Aspergers is my greatest strength in other contexts it’s my greatest weakness but don’t we all have strengths and weaknesses? This doesn’t make me special, this doesn’t make me unique, this makes me human and that is all I want to be.

My relationship with autism and the autistic community is widespread in vast. My parents served as Special Ed teachers and my mother has a Masters degree from Columbia Teachers College in Special Education with a concentration in autism and my brother is severely autistic and intellectually disabled. When I was 17 I was diagnosed Aspergers. I’ve been learning about autism my whole life from living with my severely autistic brother to my growing up in special education and two residential treatment centers. When I was 19 I started doing public speaking raising acceptance of autism that I’ve been doing now for seven years where I’ve gone around to various community groups, colleges, synagogues, parent groups where I live type autism across the life span from early childhood to adulthood. I have supported parents in navigating the complex world of the developmental disability system and the special education system. I’ve worked with five disability rights groups on autism related issues where I’ve lobbied in levels of government for the cause of disability. In my time working with the Autistic Self Advocacy Network who I’m no longer affiliated with, and in some ways ashamed to say I ever was affiliated with them, I learned the basics of disability studies and the history of autism Neurodiversity and disability rights as a whole. I also make music and film on the subject of autism where I’ve explored issues of autism in the workplace, the history of autism, and autism and LGBT identities, as well as the role autism has in the Jewish civilization. From my point of view it’s an honor to serve this community and it’s an honor to be a member of this community and the high functioning end of the autistic spectrum in essence I couldn’t be more proud to be an Aspie.

References
Dunn, Juliette. “Autism Speaks: Deception, Eugenics, and Abuse” . Medium. May 23 2020. https://medium.com/artfullyautistic/autism-speaks-deception-eugenics-and-abuse-618cf65c094a

Happe, Franseca. Baron-Cohon, Simon. ” Remembering Lorna Wing (1928–2014)” Spectrum News. July 15 2014. https://www.spectrumnews.org/opinion/remembering-lorna-wing-1928-2014/

Podkul, Alexander. “Understanding the puzzle of Autism Speaks” Opinion” Philanthropy Daily. June 17 2014. https://www.philanthropydaily.com/understanding-the-puzzle-of-autism-speaks/

Romero, Marina, Juan Manuel Aguilar, Ángel Del-Rey-Mejías, Fermín Mayoral, Marta Rapado, Marta Peciña, Miguel Ángel Barbancho, Miguel Ruiz-Veguilla, and José Pablo Lara. 2016. “Psychiatric Comorbidities in Autism Spectrum Disorder: A Comparative Study between DSM-IV-TR and DSM-5 Diagnosis.” International Journal of Clinical Health & Psychology 16 (3): 266–75. doi:10.1016/j.ijchp.2016.03.001.

Senior, Jennifer. ‘NeuroTribes,’ by Steve Silberman”. New York Times. August 17 2015 https://www.nytimes.com/2015/08/23/books/review/neurotribes-by-steve-silberman.html

Slagstad, Ketil. “Asperger, the Nazis and the children — the history of the birth of a diagnosis” Tidsskrift for Den norske legeforening. May 24, 2019. https://tidsskriftet.no/en/2019/05/essay/asperger-nazis-and-children-history-birth-diagnosis

“Social model of disability” . People With Disabilities Australia https://pwd.org.au/resources/disability-info/social-model-of-disability/

“Disability in the Media: Stella Young” Disability in the Media: Stella Young DO-IT.
https://www.washington.edu/doit/disability-media-stella-young