Raquel Tavares Lebre
(Vice President of APVA)

Ever since I can remember I have always felt that I don’t know how to be Human and that I don’t belong in this world. So from an early age I have always searched for what it is like to be Human and its behaviors, because I simply felt that I was different from the norm, and therefore, I was wrong and completely out of touch with reality.

It was through extensive observation and imitation that I adapted to this society and normative system: how to react to certain situations, how to speak, how to be in each occasion, how to interact with people.

Since I was a little girl, I have been considered as “too shy” and could not initiate a conversation with anyone. I even had convulsions without ever losing consciousness – partial epilepsy – because I was in the middle of many people, even family members. This type of reaction of the body can be called “meltdown”, which occurs when there is an intense overload in our brain, making it unable to process information or any other stimuli, thus increasing stress and anxiety, which consequently is externalized in various ways, such as screaming, crying, aggressiveness, or convulsions, as happened to me.

At the time, neither I nor my parents understood why this was happening to me, until I found out in September 2020 that I am Autistic!

I spent years studying, including in my Bachelor’s and Master’s degrees, human behavior, the brain, communication, to be able to understand everything around me – this is one of my hyper-focuses.

Even so, I still didn’t understand why I still thought I was strange and had a different kind of thinking. I thought I was stupid and never knew what I was good at, or what I wanted to do professionally. This is because I had also been “camouflaging” or “masking” all these years. This type of behavior is precisely when the autistic person observes, analyzes and imitates the behavior of others to hide certain socialization difficulties, without being aware that he/she is really doing it, without any intention of being false or cynical, just a defense mechanism to be accepted and to adapt. 

Well, when I found out in 2020 that I am autistic, the first feeling was of immense happiness. I finally know who I am! I can finally understand myself. It is my identity! However, I started to analyze my whole life backwards, and I felt like the biggest fake in the world for having always hidden myself for fear of not being accepted or being disowned. I did a lot of things to simply please others and to look good, since that’s what I saw everyone else doing. It was a very intense and painful process of self-analysis. 

That’s when I went into autistic burnout – which is slightly different from the typical burnout syndrome caused by professional reasons. It is either due to intense physical, mental and emotional exhaustion, often accompanied by loss of abilities in autistic adults (it can last for months or even years) – acute – or due precisely to the cumulative result of years of masking and suppressing who we are in order to be accepted – chronic.

In analyzing my entire childhood and adolescence I became aware of certain traits, within the autistic spectrum, that were always there. It’s a deep self-knowledge and a huge realization! This is when I start to feel that it’s time to really be who I am and that I won’t hide anymore. Only at 30, but now I know what my truth is. I know why I have hypersensitivity to touch and hyposensitivity to sound, food selectivity, am quite literal (not understanding irony or indirectness), have anxiety (although I thought I didn’t), alexithymia – difficulty distinguishing between emotions, both our own and those of others (it’s not knowing how to describe how we feel or identify what others feel), so I didn’t have any notion of some of these characteristics or co-morbidities in me before, also because I didn’t know if other people felt this way or not, at least with such intensity, I can’t look into other people’s eyes for a long time, among other things.

So I concluded that after all I wasn’t wrong, just out of the normative standard, because after all what is “being normal”? 

Today I feel good about myself, I don’t have any prejudice about saying I’m autistic and I’m really happy for having finally discovered myself. For this very reason, and for searching more and more information about autism, I verified that there are many myths, misinformation and very little research, especially among adults and women. Then came the purpose of creating an Association to help other autistic people, giving voice to them, and promoting their inclusion through various projects, so that society in general can understand us better.

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