Voz do Autista

Normalizing autism – the challenge of medical research at the light of neurodiversity by Rita Serra

bt49outi — Thu, 17 Nov 2022 12:23:00 +0000

“Normalizing autism – the challenge of medical research at the light of neurodiversity” by Rita Serra

Text written for iMM Newsletter from Faculdade de Medicina da Universidade de Lisboa. Besides being a PhD in biology and a researcher in Centro de Estudos Sociais of Universidade de Coimbra, Rita is autistic and part of APVA – Associação Portuguesa Voz do Autista. Read below a personal intake on the definition of normal and the future of “autistic medicine”.

Not that time ago, medicine understood menstruation as a curse. It took centuries to accept women’s bodies as part of the normal human experience. This step was absolutely essential to develop women’s health. I offer here a similar argument for autistic bodies.
The struggle to normalize bodies follows two opposite trends: one results from the activism of monsters – all those excluded from the definition of health by nature, that seek to expand what is acceptable to our species; the other results from all those that seek to reduce such acceptation, creating a narrowed normal and a cure for deviations. The frontier between normal and pathological opens the space for clinical research. Nevertheless, the afflictions of the body are not always visible from the outside – an external point of view. Although the body speaks to doctors able to understand its language, the subjective experience of wellbeing is accessible only through the living embodied experience.

As I write these words, autistic advocates, together with clinical professionals, some of which are diagnosed as autistic, are working to redefine these boundaries at the light of the neurodiversity paradigm [1]. Neurological diversity is not the problem to be cured. As all bodies, autistic ones can suffer from afflictions that are being defined by autistics themselves: sleeping issues, inertia, transitions between activity and rest, among others. Clinical research can and should conduct inquiries into the afflictions prioritized by autistics, that can surely improve the lives of autistic people and their families. Additionally, clinical research, and neurosciences in particular, can help us to understand better the differences that trouble communication between autistic and non-autistic people at the light of the double empathy problem. Such is essential for true collaborations to emerge between different minds.

The acceptance of diversity in neurological bodies should have an effect on researchers as well. As research is an embodied practice, we should oppose to an “unmarked normal” vs. an increasing list of “special groups”. By expanding normal, one should, eventually, abolish it, recognizing the diversity of cognitions that must be supported to flourish, its own flaws and pitfalls. This cannot be done by constantly comparing normal and abnormal bodies. Methodological challenges must be overcome to avoid “blaming the fish for not having wings, and blaming the birds for not breathing under water”.

One of the ways of responding to these methodological problems is by including autistic people in research as participants, not only as subjects. Mixed teams of autistic and non-autistic researchers are essential for the progress of autistic medicine. This is already in progress, although it will take time. The diagnostic is certainty a starting point for such medicine to emerge. Supporting autistic professionals is absolutely essential, as well as overcoming stereotypes of autistic doctor heroes. Maybe we can finally recognize that doctors are human as well, in need of prevention of burnout, job security, nurturing and accommodating environments as we all are.

[1] Pellicano, E., & den Houting, J. (2022). Annual Research Review: Shifting from ‘normal science’to neurodiversity in autism science. Journal of Child Psychology and Psychiatry, 63(4), 381-396.

“Autism” Video by Maria do Mar

bt49outi — Mon, 14 Jun 2021 14:01:12 +0000

Maria do Mar

I couldn’t sleep, tears were streaming down my face, I grabbed a paper and pen and wrote down everything I felt at that moment. I never picked up that text again. A few months later I decided to create a video for my event. I knew exactly what I wanted. A voice saying a text of mine about autism, while I interpreted and danced. I spent days and days without knowing what to write, without inspiration. Then I remembered that text I had written one day when I was so frustrated. I read it and was so amazed at what I had written. I was sure that this was the text for my video. And here it is!

“The Writing of a Book” by Sérgio Silva

bt49outi — Thu, 10 Jun 2021 16:37:34 +0000

Sérgio Silva

After giving my life testimony in a media outlet and then in a simple coffee shop conversation, something incredible began to take root inside of me that I never imagined would have such a big impact on my life. At that time, I created a blog, where I wrote articles about autism raising awareness of younger and older generations and the feedback I received regarding my writing was quite positive.

Even so, I was far from imagining that I would accept the great challenge that a good friend of mine had proposed to me, that is, to write an autobiography. At first I refused, because I didn’t have much capacity or patience for the challenge in question.

I confess that I still showed some reticence about building this project alone. Alone, as they say, always counting on the unconditional support of many people. After much insistence on my part and some failed attempts I ended up putting this idea aside for a few years.

After rewriting it again and not being satisfied with the result, already somewhat discouraged, it came up in conversation with a friend who offered to help me structure ideas and improve my written expression.

After a few years I realized that this is the most appropriate form and directed at the reader as if he or she were an extension of myself. In addition, when writing this book, I had the concern that those who will read it will see themselves in each moment and identify with it.

Thus, I found through writing a more uncomplicated way to communicate with feeling what is in my soul. Knowing myself “just as I am” and being able to share myself with whoever understands it is the perspective I have of affirming myself in a simple life, surrounded by those I love the most. Thank you very much.

A very heartfelt hug from this friend

Sérgio Silva 10-06-2021

“Meltdown – a personal description” by Sara Rocha

bt49outi — Thu, 10 Jun 2021 16:05:10 +0000

Sara Rocha

I rarely have meltdowns. I usually have shutdowns. However, yesterday I had one and I would like to share with you how I felt.

First of all, I usually have meltdowns just from emotional overload. Usually, with sensory issues, I feel exhausted, have a shutdown (vague, internal gaze) and fall asleep wherever I am. Since I have alexithymia, I have a very hard time understanding and identifying how I feel. This leads to me having difficulty processing emotions, and becoming emotionally dysregulated. A lot has happened in my life, and the mixture of emotional charges, has been too much.

I can’t exactly explain the beginning of a meltdown, mainly because I never realize I’m starting to have one. I start to feel a heaviness in my head and in my eyes. I know I felt confused, brain foggy and a feeling of an “emotional balloon” getting bigger and bigger. This is the best way I can describe it. The more it grows, the more desperate I feel. Eventually, I simply blow up.

I lose the ability to understand what I’m thinking and I cry. It’s a desperate sob, not a normal cry. As if everything is externalizing. When that happens, it’s like I go into shock. As soon as it starts to calm down, the feeling of being sick comes. Every time I have a meltdown, it’s like I have the flu afterwards. I feel feverish, cold and shaky, with headaches and body aches, and I couldn’t sleep properly. That was yesterday. I almost didn’t sleep and today I feel like I’ve been hit by a truck (and you can see how my eyes look below).

I had to take my meds and now I need to recover. I just want to warn you that meltdowns are NOT tantrums. I am an adult and it is still deeply tiring and stressful, and I will have several days ahead of me feeling exhausted. We have physical signs of the impact of this on our bodies and minds. It is confusing and debilitating. I feel emotionally drained.

So be understanding. I wouldn’t blame a person with epilepsy for having a seizure (and sometimes meltdowns can be epilepsy seizures in some autistics). Avoid placing expectations and help us recover. Give emotional support and don’t make us feel guilty.

Obviously, this is MY experience. Every autistic person is different and meltdowns can be with biting, screaming, crying, hitting, etc. It is an externalization of energy, so it depends on the person.

“Inflexibility in Routine” by Sara Rocha

bt49outi — Thu, 10 Jun 2021 15:55:38 +0000

Sara Rocha

During my life I have received many comments about how I didn’t give in and how I was too rigid in the plans I made. This is actually true to some extent, but totally untrue in others. Nowadays as I analyze my life, I realize that everything I do has to have a specific purpose.

I don’t travel to “travel”, I go to specific places to do specific things, and I can’t go “for a walk” without a purpose. I don’t go out without a purpose, or “let’s go for a walk somewhere without a plan.” In fact, I get internally irritated when people suggest that.

I am very happy to be alone and focus on my special interests, and to stop and leave that for socializing, with all the need to mask it and all the associated effort, makes me need a reason, or purpose. We only have a specific amount of daily energy for everything in our lives, our jobs, friends, relationships, and allocating that energy to things that have a purpose makes sure that I don’t get too tired or have a burnout or meltdown.

Situations where “we’ll see”, means I’ll have to continually not know how much I’ll have to mask and how much effort I’ll have to put in for no specific purpose other than other people wanting it. I’m not good with unexpected and unplanned situations, which leave me extremely overwhelmed and confused, so having a purpose and a path helps me control my own environment and make sure the outcome is worth all the effort.

Neurotypicals like unplanned things and some even blame us as “inflexible” and “too rigid” for not agreeing to this kind of carefree situation, but for us it’s not carefree at all. In fact, it requires immense preparation on our part.

I don’t think autistic people are not flexible. I think we are quite flexible, because we live in a world where we have to constantly adapt to the neurotypical way of working, socializing, or being. I don’t think it’s unreasonable for us to take care of our energy levels and use them for specific things to ensure “survival” in a world that was not designed for us.

Be aware that all social encounters drain us of energy, and most things in life need to have at least a small level of socialization. Now imagine that you can only handle a specific part of that, at work, family, friends, partners, etc. Would you risk getting involved in situations that require you to expend an indeterminate level of energy for no specific reason, and then not have enough to work with? Or would you focus on things that have a purpose, like work, allocating whatever energy remains to worthwhile things?

It’s not unreasonable, I think, to want to spend the small amount of energy we have on something we really enjoy, rather than pushing ourselves until we have a meltdown or painful exhaustion.

Also, my experience with autistic people is that we are quite flexible in terms of accepting who people are. Although we control our environment, we don’t tend to control people. Some neurotypical people, however, are very inflexible to things like different sexualities or non-binary genders.

We have to be flexible every day of our lives, with the amount of sound in a bar, the small talk at work, the dating scene, the way friendships work. Everything in our lives has to adapt to a world of neurotypicals, and they rarely, if ever, have to adapt to us.

So, in reality, who is really inflexible?

“Handbook of good practices for autistic people” by Catarina Abreu

bt49outi — Thu, 10 Jun 2021 14:24:30 +0000

Catarina Abreu

This text has a much more positive tone than the ones I have been writing (thank you, antidepressants). I write since what I am about to write is “easier said than done”, even I have moments when I just want to send everything to… It’s not toxic positivity. We have a right to be angry and quite angry, but the idea is to redirect the anger towards the real villain: empowerment.

1 – Value is what we give it

We generally have low self-esteem. We blame ourselves for being this way, as if we possess a curse and are not as good as the “normal” ones. The good news is that yes, we do have value for ourselves. We have good parts too. And yes, they say a lot of things about us. Bad things. But they have no right to define us that way. They are not on the inside of us, they don’t know what we go through. As the old saying goes, he who doesn’t feel, doesn’t understand.

So sometimes it’s better to apply the in at 100, out at 1000. They are the “ignorant ones,” not us. Repeat after me: we are enough. And the pejorative adjectives they give us don’t necessarily have to be true. “You’re slow, Catarina” Yeah, we have a brain that processes everything, it’s like a machine. Of course it will take longer, it’s like the computer, which I heard the other day “with only one tab open, it will be faster than with ten!”. So of course we fail, but this doesn’t mean that we are incapable! Have you ever tried to let us regulate and reduce stimuli? Have you tried adapting your environment? Do it, and then appreciate the result. So much for sluggishness.

2 – Meet your fellow citizens

Like many others, I have been in contact with several autistic groups like myself. This has made a spectacular revolution in my way of looking at life. I now have a hope and examples that I didn’t have before, of people who look at the world in a similar way to me, who are not so judgmental. The ship has finally returned home. Ironic that the experience I have is that neurodivergent people in general, who supposedly lack empathy and have social deficits and other things are usually the most inclusive, the friendliest and the most honest, and the least judgmental. As I read once “it’s not about exclusion. It is (among other forms of oppression) capacitism that excludes. It’s more about valuing each other, since no one else does.” And this is it. Being united is great because it empowers us as a discriminated group, and this can lead to improvements in our situation.

3 – No one owes anything to anyone

Yes, I also have trouble accepting this fact at times. For many years I was successively excluded from various things. In fact, today I believe that I still am. And yes, if I am confronted they will say that no, they are not like that, or that they don’t discriminate me for being autistic, but I know that unfortunately, no matter what they say, yes, I am. Maybe they may not even realize it, but microaggressions do exist. However, they are free to invite whomever they want, and if they don’t want our presence in some activity, whether it’s a trip to the café or an excursion to South America, they don’t owe us anything. This seems very unempathetic of me, “so they exclude you and you don’t care, Catarina?” I reply, “I already cared a lot, and what good did it do? Frustration! They’re not going to say ‘sorry, we really screwed up’, the sooner they’re going to do gaslighting.” The truth is that if they don’t want our presence, for whatever reason, bear with me, forcing it is much worse. Invitations, inclusion and acceptance have to be done willingly and freely. We have to fight for this acceptance, for real inclusion, not for others to like us and include us out of obligation.

4 – Others, in general, have no right to decide what we can or cannot do

Attention, before you are misunderstood: I’m talking about the general population having the tendency to limit someone because of stereotypes associated with a certain disability, not in cases where for example a doctor forbids an alcoholic patient to drink, or a blind person cannot drive a typical car, those obvious situations. People, in general, have the habit of putting everything in little boxes, and stereotyping people with some kind of disability. To think that a person, because he or she is x, cannot automatically do such and such a thing. We see this a lot, for example, when a child is diagnosed with autism and the parents are immediately told that the child won’t be able to go to college, have friends, get a license, etc. or when the adult person is infantilized and not given the same opportunities and invitations that would be given to a typical friend. This goes along with points 1 and 3. However, as I have already mentioned, who decides what we want to do, who defines us is ourselves…

5 – …there are no ridiculous or impossible dreams.

There are times that I am ashamed of myself, for often expressing my desires and dreams and still not having the financial conditions for it. Or because I think that the typical people will think it’s “too much” for me and ridicule me behind my back. We are human and as such we have that right! I am within my rights to dream and to want to do things. Even if it is with adaptations, what matters is to live. For example, I have a dream to travel around, to see the world. I love trains, they are my favorite means of transportation, I really want to travel around Europe by train. You know what? I have that right, and I also have the right to whatever adaptations I may need, not to be told it’s impossible.

6 – We should not let ourselves be made to feel inferior because we need adaptations/help

I still struggle with this aspect a lot. We are not inferior because we need help/adaptations in things that most people do with their eyes closed. Or because we can’t be as productive at times. Because we consider that there are things that really aren’t for us and prefer to do without (mind you, this is up to you). What matters is that we achieve our goals in our own time and in our own way, this is not a Formula 1 competition. There are several ways of living life and they are all valid. Adaptations serve to equalize, not to benefit anyone to the detriment of others. Human beings are a social animal, nobody does everything by himself, we always need the collaboration of each other. People survive because they help each other. In our case, we need specific things. We are different, we have a different brain, not worse, that’s a fact. There’s no harm in that. It’s much better to be helped in what we have difficulty with, and then we can reserve our energy for what we shine in, in order to realize our full potential. We are valid exactly as we are, our achievements have no less value for having been achieved in an unusual way.

7 – Achievements are always achievements, whether it takes one or ten years

Continuing the previous point, people have the habit of judging the other for not accomplishing their goals right away. Or for thinking differently. For being peculiar. “Oh, you only passed your driving test the third time? Did it take you longer to finish college? I never failed anything and I was a merit student!” “Are your friends by Zoom? I have real friends” Okay, best wishes to you. I’m glad you made it. What matters is passing that exam, and the person then effectively driving well. What matters is the person getting the diploma at the end, and being able to get some job with it. What matters is finding people who like you and listen to you, whether online or offline. Not least because online friendships can become offline, and typical people themselves also turn to online to find friends or other even greater things. The question should be more whether people are participating on equal terms. Here the previous point comes in. The point should be to adapt to the other person’s way of functioning in order to get the best possible results. If it takes longer, it doesn’t matter, what matters is to arrive. In my case, will it take me longer than typical to get the “straw”? Yes! The fact is that I did it with almost no help, I suffered and put up with things that others did not put up with! It’s the story of the fish trying to climb the tree! I tried very hard, and no one has the right to take credit from me.

In short, we are all amazing and deserve better than we have. We should unite and fight for our rights, and listen less to those who know nothing. We should focus on those who really believe in us. In time, I believe we will evolve and more people will believe and accept us and give us the value we really have. This text is not an attack to the typical people, in fact it is good that they read it in order to know our reality and be able to put themselves in our situation. And I believe that there are those who have an open mind and want to grow, to learn, I’ve crossed paths with people like that. It’s one more text to help us face the negative situations in our daily lives.

“Relationships” by João Carlos da Costa

bt49outi — Fri, 02 Apr 2021 11:58:52 +0000

João Carlos da Costa

Relationships - Friendship and Love

I want to confide in you something that has occupied my thoughts for a long time.

The topic has to do with relationships as an autistic person.

Most people think that we are associates and like to be in our ball.

What I want to tell you is that this is a false sensibility of yours.

Autism doesn’t take away the will or the joy of having a love or friend but it does give us an enormous faculty of hypersensitivity to what is not genuine or based on other premises than truth and authenticity.

I look around me and see most of them surrounded by people, but totally disconnected. They walk around with alienated looks on their faces without knowing how to differentiate between their own and other people’s wishes, and they stay in love or friendship relationships out of habit, conviction, or because it has always been that way.

Where is the inner flame and the affection that they claim to be from the neurotypical world?

The value of friendship

What I have been feeling is a deep joy, because in the course of my twenty-four years of existence I have felt it only twice.

The first time was in 2006. My friend was someone with whom I shared a lot of joy and companionship.

I had moments of complete dedication and surrender. I felt that with him I could learn a lot and evolve.

He even taught me how to ride a bike and with him I lost my fear of dogs. Whenever we were together the energy of mutual recognition reigned.

As time went by, however, I felt that I put up walls between us, and as time went by he disconnected from me and forgot me.

Sometimes people are afraid to give themselves up in whatever relationships they have and in an attempt to protect themselves from love and friendship they cancel out a part of themselves.

I still like my friend and cherish him, however, I respect his distance and belief that deepening bonds of friendship or love generate soul commitments that not everyone can handle.

In this day and age affections are something that make many people uncomfortable and when it comes to dealing with difference things are even more daunting.

Autism brings with it many challenges, including in terms of affections, because people either withdraw because of our characteristics or close themselves off so as not to get involved. In any case, the man who shields himself in surrender or lack of courage lives by halves.

At the moment I have an assistant with me. It is obvious that there is a professional link, but I feel a sense of commitment. When there is a commitment, a safe haven of trust is created. With my assistant I feel protected and loved.

There is much beauty and growth together when we feel that between us and the other there are no defensive walls.

Friendship befits us when our vulnerabilities are embraced by the other as a meeting point and not a defense.

Love

What many people think is that the disabled or autistic person does not have the gift or the ability to love another person, and here I don’t mean parental love, but to feel attraction, desire, or willingness to have one or a partner.

When you suffer from a disabling condition it is almost as if the ability to live life is doubly taken away from you.

Do you want to know if I want a relationship? I tell you that I do. I want and desire it with all my heart and I look at the opposite sex with admiration for its beauty and charm and think how I would like to hold someone in my arms and tell her that I want to love, protect, and make her feel that her happiness is important to mine.

Those who don’t give themselves body and soul are a product of fear and live by halves.

I have never dated, which doesn’t mean that I haven’t loved. I have loved and I love and I suffer in the middle and physical locks, but I think that in the face of what I see I am more qualified to love. I love with the courage of knowing that I am currently deprived, but in the midst of it all I cherish the love I carry. I want to begin to externalize my feelings about love because it is a feeling that is above any condition. Having something very disabling does not mean being detached from the will to love.

I look at the world and observe how oblivious they are to everyone experiencing difference. I think we are often treated with invisibility and as if we are devoid of desire.

Do you think that the feeling of love and the need to be loved to the detriment of our parents is something absurd? Do you think that we do not have within us the desire to have a friend or a boyfriend?

“Bullying” by Nuno N Silva

bt49outi — Fri, 02 Apr 2021 00:54:30 +0000

Nuno N Silva

I was a 6-year-old kid, I remember my classmates one by one. The fact that I have a good memory and the hyperfocus of analyzing the human mind made me remember each one individually, but there is something, much more prevalent that made me remember in the collective, of the seven schools I attended… That something, was the bullying I went through. I can’t pinpoint exactly when it started, from physical and verbal aggression, to emotional violence and constant belittling by classmates, because it was a constant, from the time I was in kindergarten. I remember attending most of the breaks alone, either because they moved away or because I moved away, wanting to avoid public humiliation, or even physical aggression. The fact that I didn’t like sports, had problems with motor coordination, and had different topics of conversation than most of the boys, were the target of these conflicts.
As the years went by, and the situation worsened, I was less and less invited to something, or approached for positive reasons, and more and more were the harassments and teasing, which I followed until I ran away into the house. I even received anonymous phone calls, threatening me with death, and to the point of contemplating suicide, or even revenge before my colleagues. I am, and in some ways always have been, proud to be who I am, that part of who I am, autism. Being different, and assuming myself as I am, I have created many enemies along the way. Where the mentality of young people is often “that kid is weird… hence a target”, and of adults who believe that “boys will be boys, and they’ll get along…”. It makes me think of two things: One, that in 4 million years of development of the human race, we have learned a lot about how to build objects and very little about how to build relationships with others. The other, that bullying is a prevalent reality trivialized for Netflix series, and ignored as a problem to be addressed, and solved. Time passes and the affective memory of the episodes fades, but some things remain. Some distrust of people continues, anxiety about dealing with them, especially getting to know them. Life goes on too, I left school completing high school. I clung to my hyper-focus, now with a better purpose of helping other people, as a holistic therapist. I was privileged to go from “victim”, to “survivor”. But many of us have ended up as victims, of a larger pandemic – that of inequality and stigma, whether for neurodiversity or some other divergence, and some of them, ended up retreating with their lives.
Over time, I gathered my hyper-focus and life experiences, positive and negative, into something bigger. I transformed it into a mission, the mission of bringing awareness to people, of themselves, of others, of the world… My name is Nuno Silva, today I am 25 years old. If I could, I would go to that wounded 15 year old boy… 10 years old… or even 5 years old and remind him, that one day all that would have a meaning, the meaning he wanted to give, and this would turn him into the Man, healer of himself and others, that he is today, still with a splendid life ahead of him. I think he/it, deep down knew this, and I think deep down the bullies knew it too, with just one difference…. I WON, and today I invite anyone who wants to, to win too. Thank you

“Masking in Autism” by Maria do Mar

bt49outi — Fri, 02 Apr 2021 00:37:49 +0000

Maria do Mar

Like most autistic people, I have difficulty maintaining eye contact, so I look at something close to my eyes, often at necklaces, earrings, my hair, or at some sign on my face. I keep drawing, with my tongue, on the roof of my mouth, the shape of what I’m looking at. Unconsciously, this is how I pay attention to what they are saying to me and disguise eye contact. I have difficulty in social interaction, I often don’t know what to say and how to act, so I watch how people around me behave and try to act the same way. I often end up being quiet because I don’t know what I am supposed to respond to what they say. How am I seen? A shy girl, who doesn’t like to talk much. This is how I am socially classified… but is this really who I am?

Besides these difficulties, I have other characteristics, like sensory sensitivity, but I try my best to make sure no one notices, and I force myself to act as normal as possible.

Everyone tells me that I don’t look autistic. But that’s only because I make it so. I try hard not to look autistic.

Sometimes my strength runs out and I can’t hide who I am. Sometimes I cry, sometimes I scream, sometimes I don’t understand what’s going on, sometimes I can’t stop waving my hands. It is in those moments that people believe that I am autistic. They are surprised, sometimes angry, that I act like this, because they never believed the truth of the phrase: I am autistic. They never really wanted to understand that I am Autistic.

And that’s why I hide inside this neurotypical cloak. To be accepted.

And what does it bring me? Anxiety. For not being able to be who I am, for always having to be in control of everything I do and say. For having to pretend to be something I’m not. And with that comes depression.

Anxiety, Depression, Social Phobia, Eating Disorders. We are diagnosed with multiple pathologies until we receive the diagnosis of Autism.

It is very important for professionals to know how Autism manifests itself and that this masking is very real and visible. Autism is not only in the lack of eye contact, difficulty socializing, sensory sensitivity, rigidity of thought. It is in many other manifestations. That’s why the attention paid to us is so important!

When society accepts all kinds of people and all kinds of characteristics, we won’t have the need to hide behind who we really are, we won’t have to go years without the right diagnosis, so important for us and for our evolution.

“I found out I’m Autistic at 30. What now?” by Raquel Tavares Lebre

bt49outi — Fri, 02 Apr 2021 00:01:06 +0000

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.