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This year, the Southwark Playhouse in London has announced the distribution of a new play, "All in a Row". It was immediately obvious that it would not be a typical family drama. The play takes place the night before the social services separate a boy named Laurence from his family. Unlike the other three characters, Laurence, an 11-year-old girl with autism and sometimes aggression, would be portrayed in the portrait of a puppet the size of a child.
When the play was inaugurated, a critic of The Guardian newspaper awarded her four stars, saying she had "warmth and truth". On Twitter and beyond, theater lovers have also praised.
"It was quite believable. Gross. Honest, "wrote Sarah Ziegel, mother of four boys with autism and author of" A Guide for Parents to Address Autism, "on her blog. Ziegel wrote that puppetry was an effective substitute for a role that would have been too difficult for any child actor.
Elsewhere, however, people have been outraged.
Before the opening night, more than 12,000 people signed a petition calling the theater to cancel the show. They explain that using a puppet to portray Laurence "dehumanizes children with autism" and promotes "widespread misconceptions that we lack feelings and empathy." They also criticized the play for emphasizing the parents' experience rather than Laurence's. These critics have adopted the hashtag "#puppetgate" to spread the word on Twitter. many included another hashtag, #ActuallyAutistic, widely used by spectrum users. For several weeks, the barbed tweets flew backwards.
The reaction took playwright Alex Oates by surprise. He wrote the script based on his years of experience as a social worker for a severely autistic child. He solicited the participation of the spectrum people and the parents of the child who had inspired the story. As for the puppet, it seemed to him more sensitive to use a "creative medium" than to ask an actor to mimic the situation. "I'm really sorry for the harm everyone has felt," he told Spectrum. "I am particularly sorry if this piece adds to a cleavage between autistics and neurotypics with children with severe autism."
The controversy surrounding the Oates play is only one example of the deep division of the autistic community: on one hand, parents of autistic children with severe traits – including a intellectual disability, limited language ability and self-destructive acts – which consider autism a medical problem. requires treatment often intense.
On the other hand, supporters of "neurodiversity" argue that the disease represents a neurological difference and a disability – a handicap that society should accept and accommodate rather than trying to prevent or cure.
"Although I am happy to cure my anxiety, I do not want to cure my autism because I believe that it is an important part of myself and something that deserves to be celebrated," says Lilo , an autistic student who uses gender neutral pronouns. be identified by this name for security reasons.
The struggle between the two camps was sometimes harsh, with the former camp calling advocates of the privileged and naive neurodiversity, the latter claiming that parents are "capable" and that they go bankrupt to their autistic children. Over the past two decades, while the autism spectrum has expanded to include those with milder traits, this struggle has turned into a total warfare that takes place online and in person.
Both sides argue good arguments, say many experts frustrated by the situation, but the animosity is only detrimental.
"I see a lot of positive things about the neurodiversity movement, including fighting for what parents of children with autism want: getting society accepted and getting accommodation for them," says Manuel Casanova, professor of Biomedical Sciences at the University of South Carolina. But the strongest voices in the neurodiversity camp are causing "upheaval" by insisting on a strict interpretation of autism and the needs of people with autism, he said. If these opinions ultimately influenced public opinion, "this could potentially hinder research and the provision of services to the people who need them the most".
& # 39; These attitudes hurt us & # 39;
Many people attribute the beginning of the neurodiversity movement to an open letter read at the 1993 International Conference on Autism by Jim Sinclair, who had been diagnosed with autism as a child. "It's not possible to separate the person from autism," he said, addressing the desire for healing of many parents and the impact that this can have on their child. "Therefore, when parents say," I wish my child is not autistic, "they actually say," I wish the autistic child that I did not exist and that I would not be autistic, "they say. had a different child (not autistic). & # 39; "
At the time, calls for a cure for autism were increasing, as the prevalence of autism in the United States had increased tenfold between the 1980s and 1990s This rapid increase is due in part to the broadening of the definitions of the disease. Nevertheless, the media has nevertheless portrayed autism as an epidemic and many parents have undertaken advocacy work for their autistic children.
Then these kids grew up – and they did not necessarily agree with their parents' autism conceptions, says Ari Ne – eman, co-founder of the Autistic Nonprofit Network. Self Advocacy Network in 2006. "When creating the organization, there was an unprecedented number of public discussions about autism, but no representation of autistic people in this conversation," he says.
These autistic adults have amplified the movement of neurodiversity and gained increased recognition of the differences between people with autism and neurotypical people: many companies, for example, are now dedicating themselves to the hiring of autistic employees.
But some parents say that Autistic Autistic Autism is more vocal, their view stifles the voice of autistic people who can not speak for themselves. In January, some of these parents banded together to form the National Council on Serious Autism, the first advocacy organization to focus exclusively on the needs of autistic people who need significant support .
"There is a chasm between a person with very mild intellectual disability and a person with severe intellectual disabilities and all types of concurrent illnesses that tend to cluster at that end of the spectrum," said Amy Lutz, founding member of the organization and mother of Jonah, 20, who suffers from severe autism and is prone to aggression and self-harm. "There is no one who speaks directly to these families and about this extreme end of the spectrum."
Many self-advocates reacted angrily to the creation of the organization. "NCSA is elevating and advancing representations of autism, which portray autism as a burden, toxicity, and disaster," said Julia Bascom, executive director of the Autistic Self Advocacy Network. "These attitudes hurt us, increase stigma and misunderstanding and make life more difficult for everyone, including our families."
Family members can be important allies, wrote Bascom in an email to Spectrum, but "it's about pleading with, rather than pleading".
"Autism is a living hell"
The controversy around the ANCR lies at the center of the quarrels in the wars of autism: is autism a difference, a diagnosis, a disorder, an illness or a disability? These are the "D-words" that really matter in the autism community, says Simon Baron-Cohen, a professor of developmental psychopathology at the University of Cambridge.
Those of the neurodiversity camp consider autism as the first key word: difference. Considering autism as a disease is bad, says Ne'eman. "In many cases, to make a person autistic successful, happy and as independent as possible, it's based on autism and not trying to fix it," he says. Those who describe autism as a disease, they say, and others, reflect society's intolerance of difference.
Proponents of NCSA and others argue that the "difference" from neurotypes is very different from one spectrum to another and can not be so easily recapitulated. For some people with autism, repetitive behaviors can be used to calm them down or offer a way to express great discomfort or even great joy – and require only an acceptance, not a treatment. But that's not always the case, explains Casanova. "It's not a blessing to have your head in your eyes, to hold your eyes or to bite yourself," he says. "These people must be treated."
Thirty-year-old Thomas Clements, a mildly autistic man whose brother is severely autistic, is appalled by what he sees as advocates of neurodiversity, which places autism as a benign neurological quirk.
"This negates the very medical nature of autism and the need to look for ways to alleviate the most painful symptoms of the disease," he says. Benjamin Alexander, a non-verbal autistic man graduated from Tulane University in New Orleans in 2018, goes one step further: "Autism is a living hell," he wrote in an e-mail. "I do not want to be accepted for who I am; I want to be cured as a cancer patient wants to be free of disease. "
Julie Greenan, who has five autistic children across the spectrum, sees three words D – difference, disorder and disability – in her children: her eldest is in college, two in mainstream schools, one in a school for kids autistic and 17 years old. Sam, a year old, is nonverbal, has an intellectual disability, and hurts himself and others. She says she would not speak on behalf of her son in college, but that Sam is not intellectually capable of defending herself.
"For some people, it's just a difference. it's not a handicap, "she says. "For others, it is a serious and complete disability.
She says she is frustrated with what she sees as public acceptance of people with autism who need little help to cope with the disease. "Where is the publicity of my child who suffers every day?" She says.
Subgroups on the spectrum
The word that someone uses to define autism is more than an intellectual exercise. This affects the way the public perceives individuals and their quality of life, as well as access to placement programs, housing and health care.
Parents in the "mess" camp are wondering who will care for their adult children after their deaths and what will happen if they are left behind. If you asked Sam where he wanted to live, "He would go to the bathtub," Greenan said. "We can not let him make that decision himself."
But many defenders of neurodiversity also fear the consequences if people with autism lose their contribution. They highlight the dark history of abuse in institutions.
Ivanova Smith, an autistic person who uses neutral pronouns and has an intellectual disability, spent the first five years of her life in an orphanage in an institution in the former Soviet Union.
Today, Smith lives with their husbands and daughters and works as a disability rights activist. "I've seen so many people left behind in the autism community," Smith says, when it comes to choosing where to live and what care they receive. "We do not want anyone to be left behind – everything means everything."
The service battle is overflowing with arguments about the funding of research. Bascom and others say they fear that genetic research will lead to eugenics, in the form of selective abortions or even genetic engineering to "correct" the mutations leading to autism.
For Baron-Cohen, these fears are not unfounded, but the definition of biological subtypes of autism – and the corresponding needs for support and shelter – could help mitigate conflicts between parents and self-advocates. Ideally, "we will be able to target different types of interventions or supports for different subgroups of the spectrum".
Any kind of truce in the autism wars will probably force both parties to take a broad spectrum perspective – where the struggle is for the happiness and well-being of all autistic people rather than who is right.
Oates, the playwright, does not know if he will still stage "All in a Row". But he has another suggestion: "My goal and my great wish was to help these parents and therefore their children," he says about the play. "There was a way for these autistic voices to turn their indignation into advice for parents, I'd love it."
Alisa Opar is a California-based science writer and article writer for Audubon magazine. This story first appeared in a longer form on Spectrum, an information site devoted to autism issues.
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