Many people with ASD complain about not being heard. Worldwide there are a vast amount of autism platforms, mostly run by autism parents and professionals. Although those are unmissable to autism advocacy, so are the ones on the spectrum – people with ASD. Therefore, Autimates offers a place for them to say what they want, what they think, and how they feel about many aspects of life with autism.
The following interview is with Ana Parreira, a Brazilian psychologist, writer, and translator. She was diagnosed at 47 as an Asperger. Mother of two sons and one daughter – the youngest son is an Asperger, too. Ana Parreira is an author of many books, including one on bullying and harassment, and now is publishing Gente Asperger – Livro I (Asperger People – Book I). At this moment, she is working on Book II.
AUTIMATES: Do you prefer to be called ‘autistic’ or ‘person with autism’?
ANA: Thank you for the opportunity to be heard in Autimates. I prefer to be called by my name, Ana. Now, if one insists on calling us by our condition, then, either one is fine. But that is a good question to be asked to every autistic person we meet: “How do you prefer to be called?” It’s nice when people ask us friendly, non-invasive questions.
AUTIMATES: What made you search for a diagnosis? And how did it influence your life?
ANA: Some time ago, I watched a movie about an Asperger boy, and I realized my youngest son could be one. I started to study a lot about Asperger’s, first to see if my impression was right about him, and also to find a way on how to tell him. While I was doing that, I discovered that I could be Asperger too, and talked with four doctors to my son and three for myself, the same doctors but one. After three months, I turned to my son and said: There is NOTHING wrong with you (as he sometimes used to say). The thing is better than you think, you only have Asperger syndrome. And me too!” And then we started talking and watching movies about that.
I believe everyone – typical persons too – wish to know exactly who they are, not necessarily searching for a diagnosis. And, considering my life, and the way I feel about the world, Asperger was the first and the only condition that happened to fit. It is about our identity. If our condition still has to come through a “diagnosis”, let´s accept that for now, and move on, until one day something changes. Now… how it influenced my life, you ask. Well, it was a kind of watershed. It gave me the opportunity to review a lot of issues, starting with my behavior to the way that typical people, and the world, function too. I felt the same thing most adult Asperger feel: a big relief. Finally, I know who I am. Today, I don´t see myself as being anything else.
AUTIMATES: What are the most difficulties you find as an autistic person in a neurotypically thinking world?
ANA: The first difficulty is a big surprise of being even more misunderstood and judged after disclosure than I was before. But then you understand that typical world has not the capacity to function better than that. The only way to overcome daily struggles is to gain a sense of humor and see everything through humorous lenses. When things get bad, I try to laugh. When we laugh, we get some distance from the situation (Marcelo Tas, a Brazilian comedian, says that too). Then we can get back to ourselves. I was the translator for Myths to Live By, written by the mythologist Joseph Campbell. If Campbell was alive today, I would like to sit with him and have a long talk; I would ask him if a hero could perform all his way back from his journey without laughing both at the world and at himself. That is just an example, though. I mention many other difficulties in my new book Gente Asperger (Asperger People) which is being published this same month (November 2015), in Portuguese.
AUTIMATES: Name an autism myth you would like to see erased?
ANA: Well… Perhaps the idea that we are “different”, that we are kind of “strangers”, which attracts too much attention and curiosity. And, being “different”, that we are either inferior or the opposite, “genius”. We are human beings like anybody else. We want to go to the grocery, to the parties, etc. as anybody does, without being so fiercely noticed. There is an old saying I remember now, which is:
“Don´t walk in front of me. I may not follow.
Don´t walk behind me, I may not lead.
Just walk beside me, and be my friend.”
AUTIMATES: What do you think society can do to help you improve your life (and that of your children)?
ANA: In fact, I don´t keep nourishing many dreams about that, as our society can do whatever they want and are capable of doing. So, it’s up to society to choose. But one that maybe is not so hard for them to do is listening to us instead of listening primarily to those who “study” us. I mean listening to us considering with respect what we have to say, considering us as equal persons. It’s not enough to listen to us from a superior self-imposed position, which is a bias.
AUTIMATES: How do you think you or other ASD people can help a neurotypical society?
ANA: When society is grown up enough, and prepared to ask for our help – well, if till there the world has not yet come to an end -, we´ll be glad to join them, so we all have a better place to live in. I talk of dictators and terrorists, for instance. It seems they are somehow much more respected than autistic or Asperger people, who come to construct, not to destroy. I talk about us having a chance to help the world, starting from a free and moral way of thinking and acting, which seems to be one of our “specialties”. But quite before that, I mean, before expecting the world to be fixed, others and I go to places delivering lectures, talking to newspapers and magazines. I write books, I attend adults who come for a diagnosis, I give orientation to parents of Asperger kids, and I spread ideas on TV programs like TEDx Fortaleza. Sometimes, it seems that we are fighting windmills… and then I see that it gives me pleasure to fight windmills.
AUTIMATES: Is there anything you would like to tell people, regarding autism?
ANA: Be nice. Avoid gossips and lies. Live and play with us, instead of studying us. We didn´t come to this world for your entertainment. Talk about other things besides autism. We, Aspies and Auties, appreciate talking about so many other things, even the bacon thing. If one talks using codes, consider learning and use Morse Code, one of my hobbies, instead of a secret social and worn out codes. It may even be fun, and it would make us laugh together. There is nothing better than two human beings laughing together. As Monk says, “Try it. You will thank me later”!
Ana Parreira and her friend, the Brazilian football player Sócrates. Picture by his wife Katia in Campinas, SP, Brazil, one year before his death.
NOTE: The author doesn’t refer to ASD as an Autism Spectrum Disorder once her perspective is that Autism isn’t a disorder, but a difference. In that way, ASD, on this site, means Autism Spectrum Difference.