Thank you very much, it’s an honor to be here.
My name is Fernanda Santana, I’m a Brazilian autistic self-advocate, member of Abraça, the Brazilian Association of Action for the Rights of Autistic People, and I’d like to thank our partner Autistic Minority International and, of course, Lumos and UNICEF for making it possible for me to be here today. What I’ll say is, in fact, the current opinion of the entire autistic community … not doctors, not parents, but autistic people themselves. And all the essence, of course, is much the same for people with other disabilities too.
I’d like to start by quoting one of the general principles of the Convention on the Rights of Persons with Disabilities: “the respect for difference and acceptance of persons with disabilities as part of human diversity and humanity”.
For us, autistic people, the keyword is neurodiversity. And we are proud to say that our neurodiversity is truly an expression of the human diversity. That’s our identity. Our autism isn’t a disease or a mental illness, neither is it a curse, our autism is part of who we are. And that’s why the existence of a cure isn’t possible. Because people are who they are, and their differences are important too.
Autism may be a relatively new word, but we have been here for a long time, across the entire history of mankind, contributing in our way. Unfortunately, society has been cruel to us. And the children are, of course, who suffer most.
Starting with the difficulty of diagnosis, especially for autistic girls and women, who often go unnoticed. In so many places it is still hard to find doctors and other professionals that can tell you, for sure, if you are autistic or not. Especially if you are a little girl who uses her mouth to talk. Many receive misdiagnosis and wrong treatments, and unnecessary medication. But a correct diagnosis isn’t a guarantee that all will be fine.
I know it’s hard for a family to notice that their child is different from what they expected. That’s frustrating, for sure. But if you think the worst about autism, just the bad part, if you think that it’s terrible and that autistic people can’t be happy, can’t live a “normal” life, can’t do anything at all, can’t have a job, or study, or marry … well, of course it will be the worst to hear that your child is autistic.
All over the world, are desperate families without information, without help, without any support at all. And because of this lack of support, they are easily misled. They give all the money they have to the first person who promises a cure, a fake-cure. And then the most bizarre things can happen. That are the “alternative therapies”.
In Brazil, for example, we are fighting against the MMS protocol, which is industrial-strength bleach that the parents give their own autistic children to drink or force it into their rectum in form of an enema. It’s so strong that it erodes the intestines to the point that they literally come out in pieces.
Recently we heard about a Chinese clinic that killed a little autistic boy by making him walk absurd distances, just because they think that autism is laziness. In France, for some reason, some psychiatrists wrap autistic kids in cold wet towels and they call that a treatment. In many countries autistic children are being exposed to injections of stem cells, for which there is no scientific justification. Some people make autistic children breathe pure oxygen in chambers that may burst into flames. Others suggest chemical castration. Or chelation, which removes all metals from the body, including calcium, which is very important to the organism. We also heard about brain surgery and other horrible things. Occasionally, someone dies, but the “alternative therapies” continue.
The convention says that “No one shall be subjected to torture or to cruel, inhuman or degrading treatment or punishment”. But that is what’s happening today.
More conscious families, or those that simply don’t have enough money to pay for these dangerous “alternative therapies”, seek healing through unproven and odd diets and, of course, behavioural therapies, which is a polite name for brainwashing. Children are trained to pretend they aren’t autistic, trained to hide their true identity, to obey without opposition. The psychological damage is a matter of time. Compliance-based therapies, such as ABA, also make autistic children more vulnerable to other forms of violence, including bullying and sexual abuse.
Over-medicalization is very common, to drug and dope autistic children is an easy way to make them seem calm and controllable. If that does not work, then there are the mental asylums and institutions. Or, if the family has enough money, the most contemporary version, an entire housing complex that simulates the real world and keeps autistic people isolated from the real community. Is that respect? Is that protection? I don’t think so. There is no consent and it isn’t in the best interest of the child.
These children are NOT having their rights respected. And they will not, not while we don’t overcome the awareness stage and start talking about acceptance and respect. That is what we need today. We need self-advocacy. We must start to talk about what these kids are capable of, we must empower them by telling them that they can do it, can decide for themselves. Even those who don’t use their mouths to speak have to know they have rights about themselves, about their body, their health, their life.
Society needs to know that autism is more than some difficulties and that it isn’t a disease. Needs to understand that autism does not need to be defeated, because trying to do so causes the defeating of autistic people themselves and their own rights, their self-confidence, their self-esteem, their possibilities and hopes.
We need you to stop the violence against autistic children by bring information to the world. Not information about medical treatments, but about human rights, respect and acceptance. The governments need to give support to the families, the schools need to receive instruction, and children need to grow-up with their self-esteem and general health intact.
That’s the only way. The respectful way. Not just to autistic children, but for children with any disability … who are different, sure, but never less.
Thank you very much.
Fernanda Santana, 26 years old, hails from the state of Paraná, Brazil, and lives in the city of Curitiba. She was diagnosed with Autism Spectrum Disorder only after a serious depression during her adolescence, caused by her difficulties of understanding herself and the world. Today she considers her situation to be resolved for the better. She is an architecture student, an activist, and is engaged to be married.