In search of truce in the autism wars
ASPartOfMe
Veteran

Joined: 25 Aug 2013
Age: 67
Gender: Male
Posts: 38,116
Location: Long Island, New York
The Neurodiversity Movement Should Acknowledge Autism as a Medical Disability By Yuri Levental for Scientific Americam
Yuri Levental is a prominent autistic anti-neurodiversity advocate.
Aiyana Bailin, a disability rights advocate, wrote a response titled “Clearing Up Some Misconceptions about Neurodiversity,” where she claims that while she supports neurodiversity, she believes that autism is best understood through the social model of disability. This means that the negative aspects of autism are caused by a lack of external accommodations, such as in improper work environments.
Advocating for medical research, former president of Autism Speaks Liz Feld has stated that one third of people with autism also have a seizure disorder, half suffer serious digestive complications, 49 percent wander, and more than 30 percent are nonverbal. Feld claims that no accommodation could solve those specific difficulties, and that they interfere with their quality of life. In 2018, the National Council on Severe Autism was founded to take action regarding those concerns, with its founder, Jill Escher, stating that “For countless families devoted to the well-being of their disabled loved ones, the daily challenges can be overwhelming, and the prospects for the future extremely bleak.
Many who view autism as a difference or through the social model of disability claim that those issues are co-occurring conditions and not part of autism. However, as of now, there is no evidence that those conditions can be separated from a person’s autism. Furthermore, those perspectives don’t give a clear portrayal of how autism should be defined. As Jill Escher said in a blog post on this issue, “If my kids don’t have autism, what do they have?”
Furthermore, a study in 2015 concluded that compared to individuals with other disabilities, young people with autism have significantly higher rates of unemployment and social isolation. This study also included many people with milder variants of autism. There are some success stories of high-functioning individuals being able to find jobs through autism hiring programs; however, this success is quite rare. For instance, Microsoft only hired five candidates in one session of its autism hiring program. This is because accommodations are simply to aid a person in working, but the essential job requirements should be the same.
One way to solve this dilemma is to push for more medical research to find the causes of autism, while acknowledging that autism shouldn’t have to define a person’s identity. Given the aforementioned difficulties, there is no reason why a person has to be completely dependent on having autism to have a sense of self-worth.
But I am worried that the fringe elements of the social justice and neurodiversity movements are prone to fanaticism and will insist that any hint of treatment or alteration of the sacred autistic 'identity' is somehow ‘fascist’ or ‘eugenicist’.”
This is the first time I have read a statement from a neurodiversity movement critic stating that only fringe elements of the ND movement are against any treatments. Previous ND movement critics I have read falsely define being anti treatment as a core belief of the ND movement.
Levental’s skepticism of identifying as autistic is shared by many people with autism. While one can identify and not identify as one pleases this is a condition that is 80 percent gene caused and is developmental so why is it so bad to identify as autistic? People identify by their religion, race, place where they grew up, gender, sexual preference and people generally do not take umbrage with it. But identifying as autistic is somehow wrong.
His call for more money for causation is curious as most of the research money seems to be going to find causation. There seems to be a new study “suggesting’ a cause for autism coming out every day.
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Professionally Identified and joined WP August 26, 2013
DSM 5: Autism Spectrum Disorder, DSM IV: Aspergers Moderate Severity.
“My autism is not a superpower. It also isn’t some kind of god-forsaken, endless fountain of suffering inflicted on my family. It’s just part of who I am as a person”. - Sara Luterman
The rift is hardly surprising given humanity's general liking for belonging to a club and the exaggerated black and white thinking present in many people on the spectrum.
Like most polarised issues there is truth and good intentions on both sides. My whole family appear to be on the spectrum ranging from absent minded professor to severely autistic non verbal to agoraphobic recluse to overly conventional misfit. While we all want to be accepted for who we are the fact is we lack the ability to function well in the world and end up hanging miserably around the fringes arguing with each other because arguing with anyone else is too terrifying. True there are certain advantages - we are on average an intelligent bunch even when taking into consideration my son with severe learning difficulties. He even has the advantage that his needs are so extreme that even in a budget crisis the council continues to pay out a huge amount of money to look after him well. But some advantages are not worth the cost. There is a clear genetic element here and I suspect interactions between genes and diet via the gut biome that need investigating with a possibility that some things could be ameliorated if not cured. To stand up and say hands off we are happy as we are is ridiculous because we aren't. I have to fight every day to maintain my mood and can't make use of the gifts that came with being on the spectrum because I can't cope with the world outside my cocoon.
Autism isn't just a neurodiversity issue it is also a medical issue and we need to stop making it harder for people to talk about the issue. Language is a flexible thing. Words mean different things to different people. It is context that matters, context that includes the experience and perspective of the person using the words. It is wrong for the neurodiversity faction to be trying to be the word police. It isn't helpful to silence people or to censor artistic expression. To my mind that puppet worked on several levels. Not only did it avoid asking a child to enact an extremely difficult and probably distressing role but it illustrated the powerlessness of a person without a voice who is reacting to a situation rather than being able to influence it in anyway other than becoming violent or noncompliant. It in no way condones that but it is a truth. I have witnessed the box ticking attempts to include my son in his reviews. They don't work for him and I suspect they are equally unrevealing when used with people who are somewhat more verbal as it is easy to ask leading questions and evoke desired responses as the larger context of the interaction is may not be well understood by the person and they are simply playing along. For example my son recognises questions and will answer yes. But he has never ever said no to anything. His meaningful answers are delivered with his fists. Which actually serves him well as it has kept the funding flowing although he doesn't know that.
Sadly I doubt there will be truce as people enjoy taking sides so much. Politics, religions, which end of the egg you crack....
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Maybe if I learn enough languages I will understand humans one day.
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