Autism Pride Day was created by a group of autistic people who wanted a day to celebrate and be proud of who they are, since April 2nd has always been too monopolized by non-autistic people. We opened the meeting to anyone who wanted to share something of their own, of their experience of being autistic, and here you have the result. Many thanks to everyone who participated.
In fact, I didn’t want to be “like that.” That “wrong” that was seen as rude, inconvenient, something away from being human, from being sensitive and sentient. In fact, without knowing that I felt it, without knowing how to express it, I felt it was too much. And yet sometimes I still thought I was a robot for not feeling as others did (as others thought I should feel, when others thought I should feel). I kept to myself my strangeness and the secret of knowing, with every cell in my body, that I didn’t belong in this world: that I was “like that.” Well, at least that’s what I was told, “don’t be “like that”!” At that time, as a consolation, I only knew that one day my “space mission on earth” would end.
I tried to be the perfect son that I was not. I created a character that everyone knew, based on what I saw, or what I was told was “the right thing to do”. I forgot myself and never reached perfection. Today I know that that so-called “imperfection” is much more interesting. I explore it with the dignity it has: if it were not for it, nature would not be beautiful or unique, but vulgar, uniform, regular, unchanging from life to life. After all, what would be the point of looking at the sea if all we saw was just a static, rectangular shade of blue? Have you ever thought that the perfect sea would only be a monochromatic, solitary block of blue?
How can you still expect that in the 21st century, with more than 7 billion people inhabiting the planet, all of them are divided only between two gender lines, two perspectives, two expectations? How can we still expect that all of them can be required the same single standard of communication, of learning, the same rhythm, the same vain productivity, the same way of seeing the world…? Since human beings are so complex and dense, or even as “free” as they sometimes like to claim, how is it that there is still only one way that goes by the name of “norm”, and it is said that everything that is outside of it should be repressed or a cause for shame? Isn’t it precisely this “stepping out of line” that distinguishes us from the factory models and makes us human? Why are we all still forced to hide something? (Yes, because no one follows or is always that “straight line” seen as the “norm.”) Who is it that is hiding anyway to create this illusory idea of the “norm” and why? For me today this no longer makes sense….
Today I follow every imperfect curve of the body, the mind, the path… and only within it do I accept my perfection. I am not a block, nor am I blue, nor am I alone anymore. I am of a diversity of hues that for too long I was unaware of, and that allowed me to see how beautiful and diverse the world around me is. There are no lonely blue blocks. As part of nature, we proudly come in many colors, shapes, forms… You have to be willing to open up and explore to discover, and that is not always easy, I admit… But today I am just sorry that it took me so long to see how, in fact, the world could be so beautiful. I’m just sorry that it took me so long to be able to proudly say that, in fact, I am “like that”.
Hello my name is Rosa and I am autistic (self-diagnosed at the moment), it seems something so simple for some people and such a shocking sentence for others. But besides that, I am also founder, now together with my only friend (the one who really listens to me and understands me) of the virtual community of support for the integration in England of all Portuguese speaking emigrants in Manchester (Portuguese Speakers Community Centre in Manchester), I am mother of two beautiful creatures and I am studying at the moment. My oldest daughter is proudly considered one of the best students in high school and my baby who has epilepsy, obstructive sleep apnea, allergies and is on the path to diagnosis for autism is a happy child despite all the difficulties.
Now if you are sensitive, you can stop here! It’s going to get ugly! 😅
All my life, there have been times when I suffered from anxiety, depression, and problems connected with the neurological system, which I thought would lead me to panic attacks. Today I understand that they were meltdowns, shutdowns, and burnouts. Not long ago I discovered that my tantrums were related to anxiety and emotional and sensory overload. My difficulty in learning, did not come from the fact that I thought I was not intelligent (and those who know me know very well that Thank God I do not lack intelligence), but all these difficulties because I did not get the proper diagnosis and support for my needs.
At age 33 I found out what autism was from my baby who shows very evident signs and since then I became obsessed with wanting to know and find out everything about neurodiversity, as usual disturbed by some thoughts of which for example:
What would my little girl look like at an older age?
What would the supports be?
Will she be dependent for life?
What form of learning would lead you to your success? Etc.
Among many investigations, I discovered that supposedly what I was looking for was the logic of my entire childhood, adolescence, and of course my entire life as an adult. It was then that everything made sense! And since then I have wondered and asked myself those same questions to some entities, such as education and health.
Why is there no intervention?
Why didn’t social services do anything after 3 consecutive years of truancy, even with ancestors of good behavior and education?
Why was there attempted murder, referred to a psychiatrist, and never followed up?
Why was I forced out of class “for being distracted” when deep down I was too focused that I couldn’t speak or couldn’t look at the teacher? So many, so many questions…but life goes on!
Despite growing up independent and being forced to raise myself. Of spending 15 years of my life without a mother and all without a father. I don’t blame my parents in that regard! They didn’t know how to deal with autism, not to say that they didn’t know what it was.
Today, at my 34th birthday, I am proud to be part of Sara’s fantastic project (Voice of Autism association).
And really for the first time I feel that my voice is heard, supported and directed in a positive way for my well-being and that of all associated autistic people. This is how, I have now found an inspiration to write my blog!
For many years I had trouble understanding why I was so different, “weird”, “fat”, “rude” (to my family who constantly compared me to other children), “beautiful, well educated and a blessing” (to the maids at school, because I helped them organize everything 😂). …today: “so transparent”, “forward”, “obsessed”, “too formal”, “I treat people like children” (according to a frustrated member of my virtual community, for being overprotective) etc. These were some of many comments I took during my life, which mostly affected my mental health! This is called bullying!
I went through some sexual and physical abuses, between epilepsy, being run over by a car that caused me to fracture my pelvis, operations (throat, carpal tunnel, and tendons), I was many times discriminated and mistreated, even though I always wanted to make a difference.
Adolescence and after I became an adult
I feel that I have regressed in terms of communication and learning, I don’t know if it is because I am currently going through a lot of stressful situations or simply because something is not right.
Everything has been a discovery and I feel much stronger and supported in “dropping the mask and being myself”. That’s why I wanted to publish this moment that I have been preparing with so much love!
Sometimes I feel so naive! It pains me to hear what they talk about autism (“Beat autism!”, “Are you starting treatment?” or even “You don’t look it!”). THE WORLD NEEDS MORE AUTISTIC PEOPLE! And I have learned that autism has no face.
I would like to study medicine. But I’m afraid of needles. Funny, isn’t it?
Reflecting on my interests, besides helping members of my community, researching, using social media, for a while I became obsessed with nutrition, but I don’t think it’s my calling and I LOVE to apprehend. I also enjoy medical documentaries and organizing everything.
For those who want to know a little more about me and how I deal with some situations:
I don’t like to talk too much on the phone or in person. I have some complexes with my voice, I don’t know why, but I have always had a speech problem and certainly missed therapies, however when I feel comfortable with someone I think I talk too much. I ask countless questions and discuss some ideas. So if I have ever not attended, I apologize. If you want to talk to me it’s really best to let me know in advance! If I open up in an obsessive way it is because I am interested and like to participate and share everything with that person.
Besides needles, I have a panic about spiders (even as a joke). I don’t like to read or do something if the topic doesn’t interest me. So if I don’t show interest in participating in something or situation, please don’t push it! Something I’m still learning is to say NO.
For some people they might think it’s an excuse, but that’s just the way it is. And what happens when someone insists and I don’t like the topic? Surely, I will spend hours and hours trying to study and understand the topic, following I will make some notes, it will cause me upset and disturbance. Possibly even shutdown and as a consequence, even times, my daughters will end up being the victims, oppressed from a meal, because I will lose all my energy in pleasing someone on a topic that does not interest me. Including promoting family conflict, because I will run out of patience and so on!
From post-traumatic epilepsy in my childhood, physical and sexual abuse, attempted suicide, poverty and a failed civil marriage in my youth, I decided to do something different! I have come to apologize, publicly! Yes it is true that most of my relationships did not work out because of some specific thing or several things! But, if my sensitivity was lower or if I knew what I had, everything would be different, I believe! Maybe that hug, would be avoided or that touch. But what is past, is past! Now is a new opportunity, to know myself better!
While living in Portugal, after having been refused help by several entities in Portugal, I decided to emigrate.
With my family already emigrated a few years ago, difficulties of survival, difficulties of social integration, sensitivity, feeling lonely and without reasons to live, I decided to give myself a new opportunity. And on 08/11/2011 I decided to emigrate to England. Crazy, right? It’s not that easy a change, however I thought I would have two options, either emigrate and “start a new life” (I thought) or it would be the end (again thinking about suicide).
I have currently lived in England for 9 years, I started in London where I lived for 6 years. It was a daily struggle between physical and mental exhaustion. Firstly, open to any opportunity, I started as a kitchen helper, but I didn’t feel well at work, I had difficulties interacting with some customers, employees and every day was a mental and physical exhaustion. I then decided between cleaning, industrial area and even tried the education area. I trained as a basic level education assistant, but I had a lot of difficulties in responding quickly, writing by hand and looking at the child. However I looked into other related areas, I managed to get into a mental health hospital for mothers and children, where I was constantly working with mental health nurses and other professionals in the field. I learnt a lot about dealing with some low esteem issues, stress and depression. But because of the fact that I tried so hard to “look normal” (the masking), they led me to give up. I trained in health and social services.
After those 6 years, I finally decided to move to a quieter place (from London to the outskirts of Manchester), I dawned again in the industrial area (honestly, today I think that my manager identified that something was not right with me, it was difficult for him to give opportunities to someone, but for me, he always gave me space to do what I liked, I was an operative but soon after I became a driver and first aid assistant, when I got pregnant I moved to administration) not giving up my persistence in working in the health area. And with the birth of my baby girl last year I took the opportunity to start again working as a geriatric assistant more focused on people with dementia (repetitive form of responding) and social services for people with disabilities. Again, everything was going great until, in addition to suspected autism, my daughter also started having focal epileptic seizures and absence. Between the stress of the situation and the guilt of regularly missing work and being pressured to attend, complaints about my handwriting and a patient who didn’t have dementia wanting to talk and I didn’t know what to say, I resided my contract once again and decided to study mental health, maths and causes of stress to give me entry to work with individuals in the same difficulties I have on a daily basis.
I write as a way of venting and learning. I always said that my life would turn into a novel or book. Well… maybe! Now will that have a happy ending? 👩🏼💻🤷🏻♀️
In short, happy Autistic Pride day and International Panic Day! It was a pleasure to have shared this adventure of mine, I hope it’s useful. Especially to parents!
That word that haunts and invites me
That society imposes on me all my life
That the more I want the more I feel deprived
Why can’t I be normal?
For some it seems they’re already programmed
They go on without introspection, without brilliance. In short, conformed.
And I row against the tide, with the oars stopped
Why can’t I be normal?
If I want to have a conversation, remember the contract
5 mins without looking in the eyes, I need to make contact
Now smile, wait, it’s not something sad Sara, be tactful.
Why can’t I be normal?
Stop moving your ear, stop the stereotyping
Sounds increase, confuse, cause entropy,
Dissociate, retreat, despair, silence is utopia
Why can’t I be normal?
I decided I needed to look for what normal is
And the way of being, of speaking, of standing
And a smile at the right time, look in the eyes, have a certain faith
What the hell is normal?
I looked up famous people that “normal” people worship
Anthony Hopkins, Elon Musk, Dan Akroyd, Dan Harmon, Eminem, Chris Packham, David Byrne, Vernon Smith, Greta Thunberg, Clay Marzo, Courtney Love, Satoshi Tajini, Julian Assange, Paddy Cosidine, David F. Sandberg
Wait a minute.
Nobel Prize, Shazam and Ghostnuster movies, Rick and Morty, Pokemon creator, Viserys Targeryen, music, activists, TV presenters, Oscar winners, surfers, creators. Art and culture overflowing with autistic vision.
Are they normal?
Neurotypicals can’t be with their thoughts
They see no patterns in the world, no details in the elements
They don’t get to the point, nor focus on the arguments
Why did I want to be normal?
The world was advanced by what is outside the standard
Who runs, risks, plays with reason,
And the human tries to erase the different, the variation
Why did I want to be normal?
And we are told:
Strive, change, transform yourself.
You need therapy, to be moulded.
Then we all become the same, all normal.
Until then, we use you as an insult, as less.
I think I’ve changed my mind.
Why I wanted so much to be normal when I can be who I am.
It is sad when we are differentiated, especially when we have this syndrome. We are not easily accepted either in the school world where we are targets of teasing and bullying, or at work where they look at us with indifferent and discriminatory eyes.
Unfortunately, reality also goes through the acceptance in the families themselves, especially those where some of the members are not properly informed or even aware of this type of issues.
We, the Aspies, are people like any other, we don’t harm anyone. We are very committed to doing any kind of study or even to acquiring a job. For this to really exist, our society should be so open that it can help us in our integration.
Stop being discriminated against! Today we are, tomorrow it could be you who are there at home. We just want a chance to secure our future. Fortunately, I still have my parents who support me and then when they leave, will I be able to defend myself alone against this world that has been cruel to me? I believe that this is deep down my fear and that of my parents, so please don’t make me suffer anymore. Don’t be indifferent to this kind of situation. I and many other Aspergers who struggle every day to guarantee our future, which we so much aspire to and which sometimes takes a long time to come.
Unfortunately I had to move to another part of the country, depriving myself of many things in search of a better future. That day finally came, but I suffered a lot to have it. Many didn’t have the courage I had, but I challenge anyone who can to leave their comfort zone in search of a stable life and above all not to put their own life at risk as I would have done if I hadn’t made the same change in my life.
This is the message I wanted you to pass on back home.
Thank you all very much !
Speaking about myself, I am a realist. Being autistic has brought me many things. Some wonderful, some neutral, some bad and some horrible. Having a disability, especially in a world that is still not one hundred per cent prepared to welcome them, is no picnic. However, I like to be the way I am, and I wouldn’t change my “brain”. My life could be much better, it is true, but the solution to this should not involve wanting to stop being “me”, but rather a, let’s say, more welcoming environment. That’s why we have this fight, so that accessibility is a concrete concept and not just an abstract one. I have flaws, like any human being, but I also have qualities. I am not a defective human being, with a “pathological” brain. I do not have any “problem” (Well, actually I do, but it is not autism). I am a human being with a brain configuration different from the norm, so it is normal that I clash with it. I have difficulties, some basic for the average person, but I also have talents that are not so basic. I’m not going to hate myself for the difficulties, it’s useless and only harms self-esteem. I can rather learn to accept them and realise that if I am a different human being, my needs will also be different and my life will not necessarily have to follow the predefined script. My life will not be better or worse just because I did not fulfil the classic goals or did not achieve them at the “ideal” time. In short, what we need is to be accepted as we are, and to have the opportunity to be the best version of ourselves. After all, virtues can be taken advantage of and difficulties can be worked on. Happy Autistic Pride day!
Watch Pedro, autistic, join his father, Marco Rojo, on stage:
I knew from an early age that something in me was different from what it is in others, something that others did not understand and made them look away or put me aside. I didn’t fit in and I pushed myself away.
A theory, a thought, a way of acting, a comment or the lack of it…I learned to hide this strangeness that I was, so that no one would notice, so that they wouldn’t look away from me, so that they wouldn’t realise that I was that strange…I was always a fraud, what everyone thinks I am, it wasn’t me, but my mask. Me…hiding behind there, afraid, forcing myself to be someone else, charging myself all the time for what I am, forcing myself all the time to falsify and dramatise and exhaust myself like that…A hoax created by observing the actions and reactions of others and then copying and representing them to others. And so I was going, more or less, unnoticed.
I hid who I was, what I liked, what I wanted, what I thought… I chose to say what I thought others wanted to hear and by then it was no longer me, it was me and the mask, it was me for me and not for others, it was only the mask… we were two…, but it was not me.
Whenever I wanted to be me, to be free and to behave without hiding anything, I took home a negative reinforcement, I took to my room a huge tiredness, a need to cry and a desire not to be like that, I took with me my guilt and failure of not being able to be like the others. Then I was sad, angry, aggressive, suspicious, anxious, depressed, exhausted and tired. Fed up. I almost gave up.
Depressions and repressions.
I no longer lay crying and wondering why the hell I wouldn’t be able to go to a dinner with my colleagues, why I couldn’t stand so much confusion, noise, laughter, vain conversations that interested me nothing, the looks, the gossip… why didn’t I have the same capacity and need to be in a group? Why did I always have to be the same “bush animal”? Because I thought differently and that was ridiculous to the others?
I now understand why I almost never answer the phone or always carry it on silent… I don’t like it. I now know why I felt put aside, misunderstood, unable to show what I am. Now I understand and comprehend so much, yet I live a daily struggle between showing, without reservation, who I really am and/or putting on the mask… it’s been so many years wearing it that I think I’ve got used to it. I carry it with me all the time and try to force myself to leave it aside, but I don’t always succeed.
I’m learning to walk without it. I’m learning to take it off!
Behind my mask is me. Autistic, neurodiverse woman with every right to be as I am. I am not sick, nor do I want to resemble anyone. I am myself, just the way I am. And only now, at 44, am I learning to be at peace with myself and others, without the mask!
– Text written on 27 July 2018