Jeg har længe gerne villet skrive et indlæg ‘indefra’ om termerne autistisk og med autisme. Hvad synes autister om autisme(diagnosen)? Jeg er mor til en ung mand på 21, der med stolthed siger om sig selv: “Jeg er autist!” Har aldrig nogensinde hørt ham sige, at han ‘har’ autisme.
På engelsk kan man bruge termen ‘condition’ om en diagnose. På dansk har vi ikke nogen god, neutral, tilsvarende term, der kan bruges som oversættelse. ‘Tilstand’ indikerer noget, der kan gå over. Og det passer ikke på autisme.
Der findes rigtigt mange velskrevne indlæg på nettet og velskrevne bøger, som voksne autister og dygtige fagfolk har skrevet om det at være autist. Selv er jeg meget betaget af Steve Silbermans bog om Neurotribes, der varmt kan anbefales.
I det følgende har jeg sakset i 2 blogindlæg (kildeangivelser er nederst i indlægget), og så har jeg indsat illustrationer fra identityfirstautistic.org. Mine egne kommentarer har jeg puttet i blå tekstbokse.
Autism is an unusual condition because the community is so sharply divided. On one side you have the neurotypical parents and families of autistic children, and on the other you have the online community of adult autistic people, many of whom are parents to autistic children. The two sides disagree on virtually everything …
Der er fakta om autisme og det at være autistisk, som voksne autister gerne vil ha, at ikke-autister (neurotypikere, kaldet NT’ere) ved:
We really don’t want or need awareness. To most non-autistic people, awareness of autism is to be aware of a disease, to regard it with a somber recognition of how serious a problem autism is and how fervently a cure is needed. It doesn’t conjure the reverent solidarity that breast cancer awareness does for survivors, the bereaved, and their loved ones. Instead, it means that the world comes together to talk about the tragedy of autism.
Most of us do not want a cure. The vast majority of autistic adults do not want a cure, nor do they see autism as a disease. It is simply their way of existing, perceiving, and being. Autism is inextricable from the identity and perception of the autistic person, and a “cure” would mean to erase from them what is their core self and what their divergent minds can contribute to society. Many of us are quite proud to be autistic.
We wish you’d see us outside of the medical disability model. In order to be characterized as a “disorder,” a condition must impair a person’s quality of life. Autistic innate traits are described in the medical model of autism in the most negative language because they are not how “most people” are. For example, we express empathy differently, but a lack of eye contact or not responding with verbal expressions of emotional solidarity does not mean we lack empathy. We show it in different ways, which may mean that neurotypicals misinterpret it, but that doesn’t mean it’s not profoundly felt.
We prefer identity-first language over person-first language. This means that we prefer to be called “autistics,” or “autistic people,” or “aspies” (if that’s how one identifies) as opposed to “person with autism” or “person with Asperger’s.” But, every individual’s preference should be respected.
We are great at self-advocating, and we wish you’d learn about autism from autistic people. There are thousands of blogs, websites, organizations, and informational resources out there produced and managed by autistics. The autistic community is a thriving, tight-knit juggernaut of change and advocacy, and they uplift other marginalized populations by focusing on intersectional human rights outside of the neurodiversity paradigm.
Autism doesn’t end at age 18. Most people tend to think of autism as a childhood disorder, but an autistic person is autistic every day of his or her life. Many of us, as adults, were the nonverbal or selectively non-verbal children you think are vastly different from the adults you see online. Adults have the ability to preserve their own dignity and autonomy by controlling how much the world knows about their weaknesses and struggles.
Many of us still struggle with meltdowns, but we are able to accommodate for our own needs as adults and usually struggle much less. And, just like everyone else, we keep our most private moments private.
We can’t do it without neurotypical allies. Autistic people need neurotypical allies to be more than just aware of autism, but to accept our differences and see our strengths and weaknesses as unique to the individual. We need your help to find our way into the conversation about autism, which means sharing articles by autistic people and supporting autistic organizations.
So, let’s shift the focus to autistic people as thinking, feeling, valuable human beings capable of speaking for themselves and their children.