“Changing the narrative on autism is paramount”: the activism of Andy Cukier
April 2nd is World Autism Awareness Day. The podcast Femiautista is hosted by Argentine activist Andy Cukier, who tells her own experience on her diagnosis and the challenges we face as a society to safeguard and ensure the rights of the autistic community.
How did you find out you are autistic?
I was diagnosed with autism in 2021, when I was 37 years old. Back then, I created my Instagram account @femiautista because I couldn’t find any gender-sensitive accounts for my audience in Argentina. I am a feminist, a cisgender woman, an adult, and an autistic person. Gender bias make people think neurodiversity is a trend, but what is really going on is that many people who are not born a cisgender man become adults without a diagnosis nor any kind of guidance.
For many years, I felt different and I suffered feeling that no diagnosis or mental health treatment could help me. After talking about my suspicion of being autistic for several years in therapy, and being told I don’t “seem” autistic and that diagnosis are labels they refused to place on me, I got tired and decided to find my own answers.
Many people who are not born a cisgender man become adults without a diagnosis nor any kind of guidance.
Why it is less frequent to find information on autism in women?
Every time I read about autistic women who have discovered their diagnosis as adults, I bawled my eyes out because I felt I was one of them. That’s why I decided to make an appointment at a specialized center, take all tests and make all interviews with professionals to confirm or dismiss my suspicions. Finally, I was right: I am on the (autistic) spectrum.
This certainty gave me relief, but I also felt angry at the mental health system, which is still thinking of autism in absolute terms. If you don’t have certain type of very-well known characteristics, as cisgender men usually have, they don’t even consider the autistic spectrum as a possible answer for your case. Autism as a spectrum also means not relative only to men. Unfortunately, this kind of professionals used to be the main referents in the media regarding the autistic narrative.
How can someone be an ally to the autistic cause?
Humanity needs neurodiversity from autistic people as well as nature needs biodiversity. The medical paradigm blaming autistic people for their behavior is long gone: we now hope to welcome a social model of disability, since inclusion is always a responsibility of the system, of the society as a whole, and never of the people outside the norm.
If you don’t have certain type of very-well known characteristics, they don’t even consider the autistic spectrum as a possible answer for your case
Autism awareness does not begin or end with lighting a building blue, or setting a “quiet hour” at a grocery store or a mall. I am autistic every day, all day long. In any case, I need the Government to focus on acceptance, support, inclusion and defense of the rights of the autistic community.
Autistic people need their dignity. We need to access education, work, leisure, and also enjoyment. We want to laugh. We want to work. We want to have affective and romantic relationships. We want to go on holiday. We want to be able to share a classroom, a movie theater, public transportation, parks, or restaurants, without being judged for our stereotypies or being looked at, without people forcing us to look at them. We need to make involuntary physical movements to regulate our senses sometimes and we need to be able to do that without causing alarm or any kind of judgement.
This is the so-called real inclusion: we need the society to stop asking us to be visually attractive to their eyes. We need them to stop asking us to be still. We move when we feel emotion, what is the deal with that? We need the Government to enforce public policy to saveguard our rights and guarantee we have the necessary support to live our lives with dignity.